Living with CVID (hypogammaglobulinemia) Helpful Hints

Required Equipment

Viva-globulin (I call it "B-juice"), syringe, needle, tubing and control tubes, pump, handy carrying case.
Viva-globulin (I call it "B-juice"), syringe, needle, tubing and control tubes, pump, handy carrying case.

Illness and Diagnosis

I am creating this blog to help other's who have been diagnosed with CVID. There does not seem to be much information out there that is helpful. The doctor also has limited anecdotal information to help with the side-effects or help mitigate the impact of living without one branch of your immune fighting system.

Hopefully this is helpful to others. Your comments are welcome and appreciated as all of us suffering from this and are searching for the switch to reactivate our B-cell immune system.

There is hope.  My doctor reports he has one well-documented case where the male patient's immune system turned back on.  So that gives us all hope and purpose to keep searching.  My guess is that all of us have different reasons that our immune system failed.  So this is a personal journey.  However if enough people provide their input, we might find some common linkages that point to solving our system's trigger.   

Diagnosis Year 2002: Short History

I was diagnosed the year of my 40th Birthday. That year, I was routinely sick from infections, mostly pneumonia. I also had severe ear infections whereas one led to Bells Palsy. Each of these episodes would require trip to doctor and antibiotics.

I was getting sick over silly things. I would work in the yard for 2-hours and then have a 104F fever for next two days. I taught Sunday school and if one kid had a cold, I would get a fever within hours. On vacation at beach, ocean water entered my ear canal. That lead to a horrible ear infection. The ear infection ballooned into Bells Palsy – inflammation of the cranial nerve VII leading to paralysis of ½ of the face. I was like the Joker on Batman…only ½ of my face could make expressions. I could not pucker my lips; speaking certain words was also difficult, only half of my tongue could taste and my eye would not shut when I slept requiring me to tape it close at night. It was a wild experience. The doctor started me immediately on a steroid which reduced the long term impact and helped me fully recover over the next 4-6 weeks. Today, some ear pain still lingers and my right eyelid does not completely close when I sleep, but this is all minor.

I believed I was allergic to something in the mulch or yard. I made appointment with Allergist who was also Immunologist. He gave me vaccine for pneumonia, a battery of allergy tests (all negative) and asked for me to have blood sample drawn at local lab. Completed the blood draw same day (Friday). On Saturday, Dr called me and blurted out the dreaded words: “Acquired hypogammaglobulinemia.” He said I did not make any antibodies to the vaccine. One branch of my immune system was basically “turned-off” – the bacteria fighting branch of the portion that makes B-cells.

He said I must begin treatment immediately or risk sepsis (bacterial infection of the blood) which is almost certain death.

Intravenous Method

 

First Treatment Method: Intravenous Method (sorry no pictures of the equipment)

This method is where highly diluted immune globulins are main lined directly into the vein.  For intravenous infusion of human blood product, the treatment required a nurse to administer. Good thing. I traveled through the list of reported reactions like a textbook. The worse of these was the deep bone shakes (like uncontrollable chills) in addition to extreme back spasms. I would try to relax into the chills in order to prevent the spasms from taking place.  It is a horrible place to be. 

 Type of Human Immune Globulin:  GammaGuard by Baxter. 

Years using this method:  6-years

Pros of this method: 

1)    Infusions are 1x per month.  Take about 3-5 hours. 

2)    Allows you to travel and not be a slave to weekly B-juice infusions

3)    First few weeks, you are “hot” with immune fighting cells.  However see “cons” of this as well.

4)    Day after import, you feel great, strong – almost like superman.  I exercise regularly and after infusion, I am always strong, faster and have more endurance.  Maybe it is the liquid.  Either way, I always liked the boost. 

Cons of this method:

1)    Risk of extreme reactions during monthly infusions (as outlined above)

2)    Dealing with “peaks and valleys” with immune fighting cells are physically noticeable. 

3)    Discovered I encountered fatigue and more susceptible to infection when nearing the end of monthly infusion. 

4)    Veins are stressed out during infusion.  Very painful at site of infusion.  You have to find a large vein that can handle the amount of liquid pushed into the vein over 4-hours.  I tried many different sites.  Finally settled on major artery on forearm (see picture).   I tried hand and wrist.  The arm was a reliable artery that I used for years after discovering it.   

5)    After infusion, I experienced extreme moodiness.  I am a very easy going person, but after GammaGuard infusion, I was very irritable and noise sensitive.  Family beware – dog as well.    

6)    It is a great deal of drama.  You have to schedule a nurse to administer; it takes 3-5 hours depending on seriousness of reactions; my nurse became a good friend, but if you get stuck with someone you do not like, it can be a long “visit” every 30-days.

Helpful Hints using GammaGuard Intravenous Infusion:

To minimize the reactions from intravenous infusions, I learned a few tricks during that period for those using this method. Hope this is helpful. 

1. Take Benadryl one hour before infusion and one more tablet immediately before infusion.

2. Take one Tylenol immediately before infusion.

3. The nurse’s protocol was to slowly increase the pump’s flow rate every 15-mintues after taking blood pressure and pulse up to a top speed of 200ml/hr.

4. To minimize extreme physical reactions, at one hour into infusion, stop the pump. No matter if no reactions were manifesting, stop the pump for 15-minutes and allow body to rest. I only have theory for this, but it seemed like it gave my existing imported immune system time to either be overwhelmed by the new – think “new sheriff is in town”; or time for the previous existing B-cells and the new B-dells to accept the presence of the other (think of this as getting to know each other as "safe" ). In my experience, it is always best to prevent the reactions from manifesting versus letting them develop even if just barely perceptible.

5. Sometimes, I experienced ZERO reactions.  I cannot explain this.  It appeared to be totally random.

I experimented with many other methods and meds to minimize the reactions.  For example, I injected Benadryl (prescription required).  This knocked me out, but did not stop the bone chills or spasm.  At one hour, I would jump from couch and suffer the reactions. 

More Tylenol, more oral Benadryl:  increasing these over the counter meds did not prove to be more effective.  So I kept to a minimum – no sense taking something that you do not need.    

Intravenous entry point

This is the vein I used for a few years. It was big enough to handle the "push of liquid" and did not show any signs of deterioration from use.
This is the vein I used for a few years. It was big enough to handle the "push of liquid" and did not show any signs of deterioration from use.

Subcutanous Method

Subcutaneous Human Immune Globulin Method:

This method involves injecting into fat tissue (subcutaneous) at multiple sites. The idea is that immune globulins once in the fat tissue will absorb into the body and perform as expected. This is my preferred method now. Only one company is FDA approved for this method.

[the pictures above show the equipment and vials of human immune globulin].

Type of Human Immune Globulin: VivaGlobulin by CSL Behring.

Years using this method: 2+ years (and continuing today)

Helpful Hints on this:

Pros using this method:

1) No “peaks and valleys”

2) No mood swings after weekly infusion

Cons:

1) It takes about 1-hour, 1x every 7-days or more often depending on your doctor’s orders.

2) I don’t know, but sticking yourself or having someone else stick you at multiple sites (I request 6) is something that is psychologically difficult to look forward to each week. It is kind of a drag. I have made Sunday my infusion day. I do it in the morning.

3) You need weekly injections. So if you travel longer than 7-days, you need to make arrangements. I understand Behring is working on a shelf stable version which does not require refrigeration. I will try that, but I worry about the preservative that must be used to keep the B-cells viable. Usually preservatives and I do not mix well.

4) Painful “quarters” at site of infusion where the B-juice is injected in large quantities under tinto the fat. When removing, some will bleed and seep fluids. But within hours, all is well. You might feel the quarters on the hind side when sitting.  These quarters only last for 24-hours or less.  Then all is well.   

 

Tubing, already primed ready for inserting into skin.
Tubing, already primed ready for inserting into skin.
Size of needles (I call B-stingers).
Size of needles (I call B-stingers).
Syringe loaded and inserted into Pump.  Needles are already inserted into fat tissue in 6-sites (I prefer 6 as it spreads the B-juice around and limits the size of liquid at the insertion point).
Syringe loaded and inserted into Pump. Needles are already inserted into fat tissue in 6-sites (I prefer 6 as it spreads the B-juice around and limits the size of liquid at the insertion point).
Ready to go...handy carrying case that makes all of this portable.  But what they don't tell you is that you have 6-tubes running from various places out of your clothes.  So it's not like you are going to the mall or something.  Only good for around
Ready to go...handy carrying case that makes all of this portable. But what they don't tell you is that you have 6-tubes running from various places out of your clothes. So it's not like you are going to the mall or something. Only good for around

Managing without B-Cells

Managing without B-Cells:

Living with a missing branch of your immune system is challenging.  Here are some things I have learned along the way that may be helpful.  The challenge is to avoid bacteria, at least the bad ones. 

1)    Two-thirds of your immune system is dedicated to your digestive system.  So be careful what you eat.  I find that salads often cause diarrhea for me.  It is important for the lettuce to be handled properly to limit bacteria growth. 

2)    Freshly cut fruit is fine, but avoid buffet service.  The fruit has been given sufficient time to grow bacteria. 

3)    If in doubt of food handling, only eat foods that are well cooked.  This includes meat.  Medium-well is best for me. 

4)    I always carry Purell hand sanitizer with me.  I avoid surfaces that have public traffic (door handles, knobs, etc).  However, with having hand sanitizer handy, I don’ make a big deal out of this.  Being aware of “when” you touch something is the secret.  Then simply squirt a drop or two of Purell into your hand and all is good again.

5)    I travel extensively without any issues.  I have been in some dirty cities throughout Mexico, Thailand and China.  So I don’t let the deficiency curtail my lifestyle.

When checking into hotels, I immediately sanitize the common areas with a special sanitizing cloth.  I purchased this from a medical supply retailer [picture].  One wipe and everything is sanitized.  Be sure to include toilet flush handle, remote control, phone, TV controls, all door knobs and light switches, including bedside lamps.  I also wipe the desk chair seat and back.  I just don’t trust what people do in those chairs.  I think I would do this with a perfectly intact immune system. 

Sanitzing Wipes

Sanitizing Wipes
Sanitizing Wipes

Comments 276 comments

Robin 6 years ago

Nice to know I have company in my world. Well said.


Judy 5 years ago

Just tried my first infusion. So many side effects, they stopped before I received even a third dose. How do you afford the cost of treatments?


Torii 5 years ago

I'm 12 years old & i've been diagnosed with hypogammaglobulinemia & its been hard. Any tips to help me through this?


mel 5 years ago

my old son started introgam infusions at 2 years old for cvid he had them for 4 years with heaps of simptoms now he has weekley sub cut at home for 6 months and the change in hes health is execlent no more antibodics and has not been to the dr in 6 months i recommend anybody who can try sub cut if you can


kelly 5 years ago

my daughter has been in and out of the hospital since she was 6 months old. she wasn't diagnosted until she was 2 years old. we tried the once a month 4 hour treatment at the hospital and it was awful. she screamed the etire 4 hours. since then we used viva globin which has been amazing. she dosnt mind the weekly infusions. i use lidocaine cream and it makes the experience nearly painless. weve been infection and hospital free for over a year now since we started treatment.


mark 5 years ago

have you gone to the Immune Deficiency Foundation website? You ca find hundreds of fellow patients with primary immune deficiencies. primaryimmune.org. I have been on monthly IViG for over 30 years.

Your comment, "My doctor reports he has one well-documented case where the male patient's immune system turned back on" defies common sense. I would be very curious to learn more about the "well-documented" case. I have never heard of any case where the patient had been properly diagnosed. If yo have CVID, your body has no way of making IgG. Saying that someones immune system turned back on would be like saying that a patients who had a limb amputated, suddenly regrew the limb. That is not a logical possibility.

If I have any advise for you, it would to be sure you are being treated by an immunologist who has had a specific fellowship in immunology. My experience from being a peer volunteer with the IDF is patients have far better outcomes when treated by a trained immunologist. Many allergists try to treat patients with primary immune diseases even though they have little or no experience in this very complex condition.

Good luck,


Tamara 5 years ago

Thank you for writing out this article. I especially like your perception of everything that is involved. I'm interested in learning more about this new therapy. I was diagnosed with CVID several months ago after years of battling various infections and several different hospitalizations for infections including, recently, Osteomyelitis. My experiences are very similar to yours. I will check with my Immunologist about the new therapy at my next appointment. He is very experienced with this illness and has been researching and treating it for over 21 years. He's a really nice doctor, too. For now, however, I will just continue with the monthly IV/Ig infusion. Thankfully I have not had any bad side effects with the exception of tight breathing and sleepiness only during the time of the infusion. I also have a very nice nurse for which I'm grateful. Thank you to all the commenters who shared their experiences as well. It's nice to know you're not the only one.


Jeannine 5 years ago

I was diagnosed with CVID 2 years ago and receive Igg infusions every 3 weeks are my local hospital. I found that having the pharmacy take my Igg out of refrigeration prior to my infusions helps to eliminate much of my bone chilling shakes. I also bring my own fleece blanket and pillow and use my infusion time to catch up on some much needed rest. I had a port put in a few months ago, which helps eliminate painful infusion sites. The nurses often had difficulty finding big enough veins. The port takes the guess work out of finding a good vein. I find that I get really tired just before my treatments too. It is good to know there are others out there that are going through the same thing as me. Sometimes I feel very lonely.


matthew Seabourne 5 years ago

Hi I am a BA(hon) product design student form the UK and I have been asked to design a mobile medical device for a Royal Society of art Student design Award 2011/12. The reason I am writing is that I have a Grandmother with CVID she has had it for about 25 years.

I am looking at redesign the home portable pump system as my grandmother had this system for a short period of time. The system was slightly different for the on that you have posted on your blog. What ime asking is if you could if it not to much of an inconvenience for you is to Emile me on my personal email address describing the advantages and disadvantages of using the home portable system and what your ideas for a smaller more portable and discreet system. This information would help me to identify the problems and give an idea of where to improve.

Thank you for taking your time to read this blog entry

My email address is matthew.seabourne@hotmail.co.uk


Karen H 5 years ago

I was diagnosed with CVID 8 years ago. I agree with "Mark" that it is imperative to see an experienced Immunologist. I feel extremely fortunate that I have excellent insurance and had a second opinion with Dr. John "Jack" Routes who is now at Wisconsin Children's Hosp. and Medical School of Wisconsin in Milwaukee. He is brilliant and and an Internal Medicine / immunology specialist. It was a little odd going to a children's hospital as an adult but I started with Dr Routes at National Jewish in Denver. He is AMAZING. Also, getting involved with the Immune Deficiency Foundation is very helpful. They have wonderful meetings and scholarships are available. You are not alone with this disease. It feels like it sometimes, because let's face it, right now, the only clinically proven treatment is IVIG.

I have used many different brands. Bringing the medicine to room temp is very helpful. I also like to wrap my arm loosely with a heating pad during infusion. I would STRONGLY caution anyone against a port. Because we are at risk of infection and the treatment is lifelong a port is inadvisable in ALL literature. It sounds wonderfully convenient and every nurse you see will ask you "why don't you have a port" and sometimes insist "you must get a port". You ask an Immunologist who is experienced and they will tell you NO. I'm not an easy stick. My record is 11 sticks for an infusion. That was with a butterfly needle. Make sure you request someone experienced in IV. YOU are the patient, the valuable customer. Never settle for sub par health care. The squeaky wheel gets the grease. I am now using Gammaguard. It has lower levels of IgA which can cause side effects. I have suffered from excruciating back pain and headaches post dose. It sucks to be miserable. I used the sub cutaneous vivaglobin for 6 months. I feel that once a week is 4 times worse than once a month. I think I mentioned it sucks to be miserable. Pretreating with benadryl and Tylenol is helpful. Hydration is essential, as is positive thinking. The goal is to maintain high levels of IgG to ward off all manners of infection. bacterial, viral and worst case, cancer. Be vigilant, it's great to eat healthy, but only IgG supplementation is proven to work in our disease.

I wish everyone good health.


Brittany 4 years ago

Great to hear other people are living normal lives with CVID! I never used IV, my Dr. put me straight on Vivaglobin and then I've been on Hizentra for what seems like a year with not much problems. I hate infusion day!! I do mine on Sunday as well. My infusion sites swell up the size of golf balls, I am finding less areas to infuse as I'm getting scar tissue so make sure you massage the area good. Have a good day!


Brittany 4 years ago

To Karen:

I would think doing home sub-q infusions would be better since you are a hard stick. I am also a very hard stick but my Dr. told me that doing the infusions at home once a week will keep my levels more balanced. When you infuse a huge dose once a month, by time you go back in for your next dose, your levels are seriously depleted and you are at more risk for getting an infection and sick. So the sub-q won't allow you to have any dips, therefore less chance of getting sick!


Marian 4 years ago

Diagnosed with CVID 2005. Currently on Gammaplex but was on Vigam. Get less side effects but seem to be getting more infections. Also getting hassled by employer as a result! Agree about the port - doesn't add up to risk infection that way, also risk of scarring.


Lea 4 years ago

Glad to finally find others who are in the same boat. I'm doing 125 mL of liquid GammaGard subcutaneously-and I have the dose split into a smaller dose so I can infuse it myself twice a week to have less of a site reaction. I went 3 mos without getting sick... and now I have a nasty cold. I can't tell if it's working or not because I have yet to truly feel a difference.


lis 4 years ago

Hi! I was diagnoed almost 3 years ago. I did ivig for about a year. now im doing it subcutaneously every week. I do feel alot better after receiving help. however i still never really feel good. im so tired of different meds. I just wish i could have the energy everyone else has.


Brian 4 years ago

Hi. I was Diagnosed about a year ago. I was diagnosed in large part because I told my doctor that my Uncle had this, and I was getting sick an unbelievable number of times a year. I'm a chef, and for YEARS I worked LONG hours and 6 day work weeks and never had an issue. Suddenly, I turned 30, we had a baby and I was always getting sick.

At first I was on the IVIG. It gave me awful headaches worse than migraines which seemed to never go away no matter how much water I drank. And I would find that the week before my next dose I was feeling really sluggish. And the fact that you need to clear your schedule for a 6 hour nurse visit wasn't really jiving with me. So I switched to Hizentra. The first 2 weeks with the nurse were ok, but I later got the impression he had NO idea what he was doing. Everything I was taught was different in the video I watched on the Hizentra website. After my wife and I figured out how to handle this the right way, its been pretty good for the most part. I don't get sick nearly as often, I can do it on my own time (which is typically Friday Nights) and I don't get as bad of headaches, though they are there once in a while. I get a few site reactions, and some swelling, but I've learned this is a part of the procedure. The finality of it is hitting me, that chances are I will need to do this forever. And I'm ok with that.

I will say, that my entire life I have never really had great energy, and never felt that great. I rarely wake up and feel good. Its usually a chore to get out of bed at 5:30AM for work and get my day started. I find that currently, at 33 years old, I am having more aches and pains in my ankles and knees and wrists than I probably should. Muscles ache and I find it difficult to get motivated to work out, but I try. My biggest problem really is stomach issues. Not sure how many of you have it too, according to websites it is pretty common. My stomach is always feeling something. Swelling, discomfort, fullness, bloating, cramping, burning, nasuea. I have stopped drinking even, completely (save for a RARE beer) due to its affect on my stomach. Going to see the gastro again next week. Hopefully they have some answers. I wish all of you well and I hope something else comes along to help us all out even more at some point.


Shannon 4 years ago

Hi. Wow, it's been really enlightening reading all your posts. I turned 39 last month. Looking back, and doing a medical history with so many physicians recently, I have really been sick. A lot.

Pneumonia and febrile seizures as a young child, asthma growing up, GI bleed after an appendectomy in 1990, pulmonary emboli (blood clots in my lungs) after my first baby in 1993, gestational diabetes with both my kids, hysterectomy due to endometrosis in 2005, diagnosed with eosinophillic pneumonia in 2005, diagnosed between 2005 and 2010 with a "poorly diagnosed systemic illness". My rheumatologist at the time was basically chasing lab numbers. I never felt "bad" and in fact finished my BSN degree while also working parttime. The only problem I was having was recurrent pneumonia. I was in the hospital 8 times in 4 years with pneumonia.

In August 2010, I had my first "joint" flare EVER. My knees were so bad, I couldn't bend them, my wrists were swollen and red as were my ankles. I had a weird rash on my lower legs. My kids and I had just moved from NE to KS and I hadn't yet started seeing a rheumatologist here. Within a couple weeks, I had an appoitment with my now rheumatologist. He walked into the exam room, wasn't in there 30 seconds and said "you need to be admitted into the hospital, NOW." I didn't argue, as I felt like death.

He referred me to National Jewish Health and after 6 months of arguing and banter with my worthless insurance company, I had my first appointment. I was told, at my first week of appointments, in February 2011, that I was a "complicated" case.

Now, a year later, I'm laying in a hotel room in Denver, CO talking to you fine folks. After a year of multiple blood draws, CT scans, xrays, bronchoscopies, a prior VATS in 2005, and a grand total of 22 bouts of pneumonia to date (over half with hospitalizations, most recent January, 2012), Dr Solomon, whom I LOVE, said "CVID", and then confirmed his suspicion with a colleague. My CT scan today was horrible. My left lung was completely whited out with infection.

I have had IVIG twice before, as an inpatient. I never had any of the side effects mentioned above. I am going to start getting them monthly. Hopefully, sans side effect. It does make sense tho, about doing it weekly SQ as opposed to once a month with a big dose. I'd think more of a constant level would be beneficial.

Anyhow, good luck to you all.


nurse katherine 4 years ago

I also am an R.N. with cvid. I infuse the Igg subcutaneously. I have found that I experience less side effects compared to administering intravenously. The fatigue comes on me unexpectantly sometimes but I have followed a healthy diet with fresh fruits and vegetables and vitamin supplements. This regime seems to help. I am in a cleaner unit of the hospital but continue to work. I feel I am contributing by still working. To the 12 year old that posted here....keep taking care of yourself and follow your dreams. All things are possible.


Kaite 4 years ago

Hi. Im new at this- on Gammagard subq since early December. The massive infection finally cleared up recently. Fatigued still, though some days I'm more energetic than others. Can i expect the fatigue to improve?

I self-infuse 1x week, which I prefer (autonomy) and keep gratitude for finally having an answer to years of respiratory infections. Any day that I can breathe freely and/or do not have a doctor's appointment is a good day. I'm also working with a German doctor with homeopathy and nutrition.


Kristopher 4 years ago

Hi there,

Thanks for posting information about this. I too have CVID and was diagnosed in 2009 at the age of 34. While you have great information, your doctor misinformed you when he told you the disease is "acquired." CVID is a primary immunodeficiency, which means you were born with it. It, as all research points out (I was treated at the Mayo in Minnesota), cannot be acquired. That terms is used for different types of immunodeficiency diseases.

Thanks so much for being out there with your story!

K


4 years ago

Kristopher,

You can aquire CVID and you aren't necessarily born with it. Whoever told you that was wrong. In fact, CVID was originally called Aquired Immune Deficeny- but that changed because of HIV and AIDS virus.

Common Variable meaning many ways to acquire it.

they believe- but aren't sure that I acquired it, that it resulted from a thymoma- Good's syndrome. I think my blood protein levels were normal in 1996 and they don't think i had it then. that the thymoma (tumor of the thymus) poisoned my system. There is a connection between the two.

I probably could have been diagnosed a year earlier...but i didn't want to go back to the drs. I had enough. I had contracted a bad pneumonia (1st time ever) and was hospitalized in ICU. That was when they found the tumor. I had 2 surgeries and infectious disease wanted me to go to them when better to figure out why i had gotten so sick...but i didn't go. was overwhelmed with the surgeries and aftermath.

it wasn't until a massive sinus infection that i was sent to an allergist/immunologist again (Had been treated for allergies as a child) and he found it. But he sucked and after a year of being jerked around I started treatment with another immunologist.


Jen 4 years ago

Hi I am In New Zealand and here they don't treat patients with CVID until you are really bad. I have been through the hospital and had blood tests and noticed my IGg and IGg levels were low. I also have low B and T cells. My immunologist looked at me and told me he was really worried. He said I have 5 years before all the effects of CVID really kick in. Holy Crap! As per, I can't get health insurance because they said I had been getting infections before I took out a policy( like twice a year- 7 years ago). I am 40 now and still on antibiotics because my sinus won't clear up. I have never been this sinusy before. YOu guys are lucky you can get your infusions! I thought I had another 20 years at least to find a hubby and have a kid and do the dreams I always wanted.. so here's to the next 5 years. You guys are all so brave. Any tips on improving immunity via diet or other?


4 years ago

Jen,

my levels were really low to. my IgG was just 52 and lower everytime I got a new blood test. Yet, i kinda dumbfounded them because i didn't get sick that often. Pneumonia once, but i did get sinus infections. I did have a year whilst I knew I had CVID and it wasn't treated. All i can say is that way before I was diagnosied, I started using purell a lot. I would wipe down my car daily etc... and it helped. I noticed I wasn't sick nearly as much.

it's not really a help. I feel i am ignorant of the *full effects* of CVID and I am not sure i want to know- as my insurance will surely be downgraded after this year and I am not sure I will be able to even afford it.

What did the doctor say will happen?


Kristopher 4 years ago

Hi Jen,

Thanks for your response. I appreciate you flat out telling me that my doctors at the University of Minnesota, the Mayo Clinic and the Reagan UCLA Medical Center are all wrong, but I want to make certain the correct information is being said so that everybody can explain themselves correctly and that health professionals outside of these hub facilities that do research on and treat CVID and other Primary Immune Deficiencies--which is what CVID is--understand the differences between acquired and primary. We often acquire other illnesses, like I did and it seems you may have, because we have a primary deficiency. We're very susceptible to acquired autoimmune diseases. So unfortunately, we have to deal with confusion and lack of knowledge on the part of the health care providers when it comes to this disease that has only been studied for roughly 40 years. The problem is, if you tell a physician you have acquired immunodeficiency ( for example when you are not being treated by your regular physicians) they will automatically go into HIV/AIDS mode. That is okay, because they would be doing their jobs and treating you, but I've had it happen more than I can count (when traveling and getting sick)that I have to explain that this is a primary illness and not to start treating me/testing me for HIV.

I wish more people--physicians and laypeople--knew about CVID and other Primary Immunodeficiency Diseases, but it's often up to us (hence you being brave and starting this site) to educate them. One thing that's been important to me is sharing knowledge to make sure we're all saying the same thing that's been researched thus far. I've been so fortunate to have been treated at some of the world's leading Primary Immunodeficiency centers for my CVID. I'm always scared of what I'll acquire next as a result of having CVID.

I wish you all the best and thank you for your work. Here's a link that might start an adventure into understanding the difference and arming yourself with all the right information.

http://www.mayoclinic.com/health/primary-immunodef...

Again, many thanks,

Kristopher


Bre Cason 4 years ago

Hi, so glad to find this site, as I was told I was probably born with CVID as I was a sickly child, i.e, colds, ear infections and the like. I'v lived on antibiotics when the colds came along. I was not diagnosed until I was 35--I'm now 64 and very healthy! My husband started giving me injections at age 35 and was taught by my doctor's nurse. We do an old fashion treatment of 1 shot once a week in my hip, along with 2 ml's of xylocaine in the shot, thus no pain whatsoever. I lead a healthy lifestyle, walk 4-5 miles a day, no red meat, but enjoy healthy fish, veges and fruit. I have not had a cold for 3 years, which is a first for me. We keep my gammaglobulin levels above 200 with this shot which seems to work for me. I feel truly blessed to have done so well after having read your comments. I hope this helps you guys along your journey.


4 years ago

Hi again Kristopher,

thanks for the link and the information. btw- i am not Jen. It did not confirm that you must be born with CVID. It used words like *often* and *many*. What you say directly conficts with my blood test results that do confirm i was not born with CVID, yet I do have it now. Perhaps I am an anomaly, I don't know. Doctors that study thymoma's seem to believe that they can poison the immune system and cause Good Syndrome- which is cvid and a thymoma.

I studied Immunology at a graduate level and I do understand what acquired immune disease is and that CVID was once called Acquired Immune Deficiency- but due to HIV/AIDS they no longer refer to it as such. obviously, one is caused by a virus and one isn't.

I understand you feel you are better educated on CVID and you probably are. But to say what I know is true- isn't...well, you can tell your Mayo Clinic doctors i would gladly send them my records. It did have the first immunologist dumbfounded- how i wasn't sick all the time- especially when my levels were so low.

thanks for the info. I try not to live in fear.

thanks again and hope you're doing well!

G


Lorie 4 years ago

Thanks for the information everyone. I moved to Alabama 7 years ago and have been sick non stop.i was finally diagnosed 14 months ago. I go to the hospital for my treatments ,so far I haven't had any bad side affects.my problem is I still have sinus issues. Constant congestion runny nose cough etc. since I am not allergic to a single thing they say it's non allergic chronic sinusitis .. Anyone have any suggestions other than moving to a new state? I've moved everywhere the past 23 years due to hubby in the military... Never have ever had any issues. I am tired of being sick achy run down etc... ALL the time!!


mary 4 years ago

Just diagnosed with cvid,and my second nasal Mercer infection,need to find out so many things,head spinning,shitty insurance


Connie 4 years ago

I was diagnosed with CVID 12 years ago and have been getting IVIG infusions one time a month since. I have the same fatigue as everyone gets when it is almost time for my next treatment. What really bothers me is that people are so unfamilar with our disease. It is just too hard to explaing; I just say go to your computer and look it up. My husband sometimes thinks that I am just lazy which is very hurtful; but the fact is I don't have the energy to do the things I used to do. I will be 60 yrs. old next month and I am so thankful just to be here. I also have the post side effects; chills and fever; migraines and sometimes stomach issues. After about a week I feel ok for about two weeks; and the last week before the next treatment is back to fatigue; possible infections of sinus, bronchitis or pneumonia. I hope and pray that one day there will be a complete cure for this; maybe not in my time but in future.

Also, my Mother had this very same disease; my doctor did a complete genetic workup on the two of us; and our markers were the very same. She has since passed because she had developed COPD; meaning they really caught hers too late; even after I had been diagnosed. So it can be passed down through generations. My sister has only the anemia part of it; and she gets iron infusions on occasions. I just value everyday and thankful that I can get my IVIG at least once a month. Just want to let everyone know "Do not ever give up, and Cherish Every Day!!


4 years ago

Been offered a chance to be part of a study for sub-cutaneous infusions that are every 3 weeks, as opposed to every week. Not sure I want to participate.


Nk86 profile image

Nk86 4 years ago from Tampa, Florida

I also have been living with CVID for the last 10 yrs and have gone thru Iv igg and now on Sub q igg and now venturing off my insurance not due to choice due to age and dealing with that at the moment as in Dec of 2012 My insurance expires under my parents and I will be 26 yrs old with a pre existing like most on this hub. I am trying to follow the best road and Have some means of affordability of a private insurance but any advice on people who have private ins and have this condition and pay out of their own pockets.

Thanks so much,


Stephanie 4 years ago

I appreciate this blog, there is so little information out there. I am trying to find information on Transient hypogammaglobulinemia of infancy. My infant son has just been diagnosed with this and I am finding little information about it. Does anyone have any resources? From what little I understand, it's similar to CVID but the doctors hope it will go away by the age of 7, and if it doesn't go away, the diagnosis changes to CVID.


ivigtreatments@Yahoo.com 4 years ago

My husband has been on 16G/week SubQ for months now. It has helped immensely. Due to vacations and shifting schedules, he has missed quite a few treatments. We just keep using the old ones and keeping the new ones. I know the cost is much to bare for some people. If anyone needs a few doses and has an active (provable) prescription, we would be glad to sell them to you at a discount as opposed to paying full price to your pharmacy. It will come with all of the supplies needed except for the pump, he needs that for his infusions weekly. Email me @ ivigtreatments@Yahoo.com if you would like to discuss further.


Jillian Thomas 4 years ago

It's great to know people understand. I'm 20 years old and was diagnosed with CVID IGG 4 defficency at 18. I receive the infusion once a month by IV for 8 hours. I have never spoken to anybody with this disease. I worry about it a lot. Risks of having children or any kinds of surgerys. I am in my second year of college at the University of Alabama. I think about scholarships but nobody is aware of them. Money concerns me because the treatments aren't cheap and I have a brother with mental issues and my parents pay out of their pocket for health related problems each month. If anyone has any advice or personal experiences that could help me please email me at njthomas@crimson.ua.edu My advice to anyone living with CViD is stay strong never fold to the fatigue fight it and keep going. It will suck you in if you lay around all day that's with any disorder. It's never to late to set a new goal or dream a new dream is my moto.


chris ohio 4 years ago

Been 3 years with ivig and doing well. Your symptoms are very similar. Have had disease since bout age 11. Now 40. Lost 20% lung function. But still work as nurse and travel as you do. Do u have ringing ears at times. I have that sometimes. And just don't plane simple feel good. Thanks for the post. Can't help but wonder if I had ivig early would be better. But only those who have disease understand how the treatments and disease make u feel. Thanks again. Post if anyone has ringing ears too.


janine 4 years ago

I have been diagnosed with hypogammaglobulinemia since 1997. Also was diagnosed with SLE in 1983, I was 16. Started sub-q about 5 years ago. I like this much better. I feel I that I have control over my situation. I do not produce Iga, Igm and Igg. Have had alot of sinus infections and am allergic to most antibiotics. Have had great care with my doctors in Pittsburgh. Glad to read what has been written, I feel that I am not alone. Best of health to all.


esq2000 4 years ago

I waas diagnoised a bout 6 weeks ago after being sick for 3 years. I have had one IGG infusion treatment and am scheduled to have them monthly. How quickly do you feel better? My muscles have all atrophied but I sm to sick to exercise. I have gained a lot of weight over the past three years from the high dose of prednisone I have been on. My eye infections have affected my vision so much that I wont drive. Anyone else have similar experiences?

Laurie


4 years ago

Hi Laurie,

I don't know how long it takes to feel better. I started my treatments two years come this october. I suppose it takes a couple of months for your levels to reach a normal level. I know I had like 3-4 treatments when they tested my blood levels.

My question- Anyone find themselves suddenly PhotoSensitive? I went to the beach and developed a red itchy rash. I was wearing 30spf sunblock. I even changed sunblocks- to a higher spf and used a sensitive skin block, child's sunblock... then a non chemical zinc. All resulted in a red itchy rash. I am wondering if this is part of CVID or not. Must ask the doctor at next infusion. I love to swim- so this sucks.


esq2000 4 years ago

Hi,

I did reaad some whewre that the meds make vid patoents highly seneative to sunlight. I also find that I get reoccuring eye infections and am light sensative.

Here is a question a REALLY need imput on. Iam from Massachussetts and grew up summering on Cape Code. My Mother passed away and father remarried a nice woman who I just found ouy has herpies symplex 1 (coldsores). She refuses to take her meds unless she is in full outbreak. She has just had an outbreakand assures me she wont have another. My thing is that if you can take a preventative pill for the three days we will be up the3re why wont you? She wont because it makes her stomach queezy. (Im sorry- can you say bone chills). I have only one treatment behind me. My numbers sre approximately 260 with the B cell being attacked. My PhD brother is saying things like "if you choose to live in a bibble like this disease you call the bubble disease is the don't come up". He also mentionrf that I could contract this same herpes in the supermarket, however did not let me expllain that my husband goes the shopping to limit my exposure to people.

Anyone have any ideas or any ideas or opinions?


4 years ago

G, I am photosensitive because I have lupus. I was diagnosed with SLE (lupus) about 10 yrs ago, though I have been ill with it for decades. I was just diagnosed with the immunodeficiency less than a month ago. I am scheduled to have my first infusion in just about three or so hours. But I am so nervous about it that I haven't been able to sleep all night.I esp am worried about going up there alone; my husband or friends are not available today.

K.


4 years ago

I hope your infusion went well, K! I was scared too.


esq 4 years ago

I can't answer, except from personal experience. Some members of my family get cold sores, but I have never caught it, nor do I get them. But they don't get them often.

I'd ask my doctor, if I were you.


Laurie 4 years ago

Ok, after being diagnosed did any of you become amost paranoid about Boeing exposed to other I feel like my family thinks I am paranoid because I don't want to eat at someone's house but will eat at a restaurant. My thought is that i deal with and fight this disease so however I decide to handle it is my decision. Any thoughts please?


Jenna 4 years ago

I would like to reiterate, there IS hope. My little girl was sick every other week from the age of about six months to nearly age five. Her awesome pediatrician found the Hgg3 diagnosis and sent us to and infectious disease specialist. Prior to that she was on a dozen meds, nebulizer, steroids, regular er bisits, hospitalizations, etc. She was afraid to laugh out loud for fear she'd have an asthma attack. She couldn't run and play with the other kids. It was heart wrenching. They gave her three, five hour treatments of immunoglobulin over a period of several months. To our delight and God's grace, it kicked her body into producing her missing b-cells. She's now a healthy, normal kid two years (and going) later! Amen


Stevem12 4 years ago

Hello, everyone! I am getting increasingly frustrated over bad headaches. I was originally on IVIGG 50 grams, every three weeks. I am now on SubQ Hizentra, 16 grams per week. With this disorder, I have always suffered from bad headaches. Some lasting days, weeks at a time, even pre-diagnosis. Doctors can't seem to help me out or do not understand the disorder. Can anyone help with some advice that i can try to get rid of these cursed headaches? I have missed lots of work and more importantly, I miss life! thanks


Julie 4 years ago

Hello, I came across this blog as I was doing some typical research on cvid. I was diagnosed with cvid in February of 2010. I am 22 years old. When i was disgnosed I was not suffering from any major illnesses so my doctor decided that it was best that I don't start the ivig since it really wasn't needed. Last July I went to a party and got a random sore throat I went to my regular doctor and was told that it was nothing to fear an it was just viral. After days of getting sicker I could barely talk and had a fever of 102. It was a year ago yesterday that my parents took me to the hospital for this sickness. Since I had cvid they had to do blood work, my bloodwork came back with a very low neutrophil count (800). I was admitted to the hospital and over the next few days I continued to get sicker. At the lowest my neutrophil count was 66. My white blood cell count was at a 1. Any fever of 100.4 was life threatening. At that point a team of doctors had a conference with my immune doctor and decided to inject me with neupogen. The neupogen worked and I was released from the hospital shortly after. I started ivig in November and I can't believe how much more energy I have. I just started my first at home treatment yesterday and I like it so much better. I Always get a little scared when I get sick now but since starting the ivig a small cold never gets any worse then it used to. I'm still learning so much about my cvid and it's nice to know I'm not alone. Sometimes I feel bad for requesting off of work for all my dr appts or treatments or whatever and I sometimes feel like other people my age don't understand the severity that this illness could get to. They think I'm overreacting or am a hypochondriac. They don't understand and to me that's the most frustrating thing about cvid. Other that. I'm very lucky and more thankful then I was last year. Haha.


Justiceforall33 4 years ago

...Steven12...I take 17g Hizentra weekly and had bad headaches from that and IVIG before. I'm now using this system with good results:

1. A Benadryl 30 minutes before I put in needles. Then another 1/2 way through.

2. Several Advil right before I put in needles (Doctors say Tylenol, I've tried Excedrin, Motrin, Tylenol and Codeine) by far Advil works best (no I'm not an Advil rep :))

3. Lots and lots of water through the treatment. (3-4 bottles)

For me this system keeps the headaches at bay. I do my treat at night and go straight to bed. Very few headaches. Hope it helps.


4 years ago

Hey I'm 18 and I've had this since I was 2. Its great to know there are more people like me. If you have questions ask. Conjured.tumblr.com


Allan 4 years ago

My wife has CVID and for several years she did not know what was wrong with her.

She has treatment every month so now she is much better but after the treatment for about three day after she has some mood issues.

But I have to say that I am happy she is much better than before.

As just about every month she was getting lung infections and ending up in hospital.

I will say that some times it is hard for her but she is a strong person thats for sure.

As she puts up with me.


Robyn 4 years ago

Hi from NZ. I was diagnosed just over two years ago at the age of 61 yrs. At the moment the specialist is monitoring my bloods every six mths but no injections yet -fingers crossed. The one real problem I have is my stomach and have become extremely intolerant to lots of foods. Now gluten and diary free. Any suggestions. I have learnt a lot from reading this column.


Julie 4 years ago

Robyn, I have an extremely intolerant stomach. In some instances I am laying on the bathroom floor crying cause I'm in so much pain. I exercise daily (particularly running). When I do. I feel 100% better. I also try to eat every two hours. With 3 full meals a day.


Robyn 4 years ago

Thanks Julie. What foods have you ceased from your diet. I have also started to exercise about 4 times a week and it has helped I think or at least I am fitter. Have had two bad bouts of stomach bugs and that really set me back. Doctor thinks I still may have the bugs etc. Back to antibiotics. This is all new for me. I had never heard of it before I was diagnosed.


Julie 4 years ago

Did the doctor think it was giardia? That's what they thought I had. My dr prescribed me with an antiparasitic because its extremely common with cvid.. I had to take it every three weeks for a while because the bug kept like coming back. I also start my morning with yogurt because its a probiotic.


Stacey 4 years ago

This has been a very enlightening group. I was diagnosed with CVID 1 year ago by a hematologist. Recently, I asked to be referred to an allergist/immunoglogist. The results have been great (only 1 appt but already hopeful). He tested me for multiple allergies (of course I tested positive for all but 1), diagnosed me with asthma, and tested my IgG subclasses. Currently my IgG2 is low along with the IgA and IgM deficiencies. Plus my pnuemonis titer is low. I had a tetnus andpneumonia vaccines and will have titers done in six weeks. I was placed on a prophaltic antibiotic, which has seemed to slow the infections. I can feel then starting but have not come to a head. My question now is when do most people start the infusions?


Julie 4 years ago

I didn't start mine until I got really sick. my dr didn't want to start them too early since im so young and then I got very sick and he said that was enough of a warming sign to start them ASAP


Sue 4 years ago

I was diagnosed 6 weeks ago. My ENT suspected it 4 months ago but I had to go through extensive testing first. I get 90ml once a week of hizentra and the only side effects so far are fatigue, joint pain and site reactions. Up until January 2010, I was never sick. I returned from nearly 3 years deployed to OIF and OEF in Iraq and Africa. I returned in April 2011. I have been sick ever since with massive sinus infections and 3 surgeries. I am coming to terms that this is life changing. I will probably be discharged from the Reserves when they find out. I firmly believe that my exposure to the burning trash, the living environment in the deployments, the number of vaccinations we were given and preventitive medications we were ordered to take is the cause of my CVID. I am currently on 6 different medications to try to combat the sinus infections. Hopefully I will eventually get better. Has anyone else been diagnosed after a deployment?


Robyn 4 years ago

The immunologist is hopefully that I may not have to start injections. I Have blood tests every 6 mths. Had several injections Hep A &B, tetanus, diptheria and others. I have also agreed to be part of his research here in NZ.


Sharon g 4 years ago

Hy guys I got very very sick, had loads infections clots you name it I had it, asthma attacks quiet severe however, at last I was thirty nine year old realised I was five half months pregnant with baby Leo, and very I'll, had loads tests when Leo was born, I was due to have an operation, couldn't walk mortons neuromas under my feet, the operation didn't take place, I was very ill with blood clots five hundred and fithty injections later, they detected I had cvid and pneumonia, which led to severe asthma and yes enobolisers tablets puffers, had it all.

I have my transfusions at a hospital in Surrey and I am so grateful to anyone that gives blood to help us, hey guys what would we do without them.

I am now able to spend time with my little Leo and not be admitted in the hospital, every three weeks I have my infusions oh wow, I have to sleep, loss hearing in my left ear due to cvid I'm fed up with it, they can't do anything, now my foots hurting again, waiting for baca nicks to help me,I have had verucas spreading under toe nails on toes, and feet. Well hopefully they will help me now I being referred, I'm happy they caught the cvid in time, every days a bonus to be thank ful to the guys that help us keep as well as we can, and the doctors and nurses, the infections get lots antibiotics so many, but love to share my experiences with you guys, see ya thanks sharon


Sharon goodess 4 years ago

I have given up working as I get too I'll, I have had cvid for four years now, life has been so hard living with cvid, tired viruses all the time, but I am pleased they found it, life is one big struggle, but I'm grateful the hospital in surrey is helping me, now they found it, loverly to chat to other people who understand me, sharon g


sharong 4 years ago

well wake up in the morning still feel unwell, my next infusion flabbagama next week, get fed up with it, this last infusion had nothing but infections, and more antibiotics after antibiotics. god life is hard eh, 7 hour infusions, i sleep most of the time, still didn't feel any better, sometimes i don't get the full dosage, to unwell, get it next time, its a struggle to start the day, full of sinusitis and rubbish on my chest, affects my asthma, im so pleased for you robyn, you don't have to start the injections, its so hard even if you want a holiday, you have to travel back, for the infusion, mines been changed four times now got so many bad reactions, i hate the wet weather, always ill, but of to start the day.


Justiceforall33 4 years ago

Sue,

I am sorry you have gone through so much and thank you for your service of our Country.

Unfortunately, you may have received some bad information...CVID can not be "aquired". It is GENETIC. If you really have it, then there were CVID cells in your body the day you were born. For many of us, myself included, the disease didn't "turn on" (although turn-off may be a better term since I was in my 40's before my immune system shut down) at birth but rather later in life.

If you "aquired" your illness from smoke, chemicals, or something else you came across while doing your duties, then you have a SECONDARY disease. Diseases such as lung cancer are secondary because they are often caused by smoking (not born with it).

If you are convinced you aquired what you have, I would seek another Immunoligists opinion right away. There are so many forms of Immune deficiencies and treatments can vary dramatically.

But please be clear, by definition CVID is primary and genetic, not aquired.

I wish you the best in your treatment.


SharonGoodwins 4 years ago

Thanks sue, not been well at all since last dose, of again Friday, to the hospital for another transfusion, god it would be nice to wake up well eh, I don't drink or smoke, but I still get up with a smile, having difficulty walking due to mortons neuromas, doc made me an insole so far see what happens in a couple of months, I may have to go back for another dose of needles to take swelling down, that's pushing on me nerve, the verucas doctor refereeing me said they will see me once hand on heart won't do anything, the hearing I will have to wait till it returns, nothing they can do, ent dept can't do anything. I've asked my doctor to do some tests to make sure my vitamins are okay in my body, they will be done in the week, what a struggle to keep well, loverly to chat with you, how you doing, I was told I was probably born with this, condition, you trust the doctors know what they are doing eh, the imglobiums doctor will help me more, there are quiet a lot of us sit toghether every three weeks, so many have the same struggle to stay well, I am scared of this cold weather always makes me so unwell. Loverly to talk to you sue thank you for your advice sharon


Sharing 4 years ago

Sue they diagnosed me with cvid when I was 46year old, god I hate those needles, but thank god there is help to keep us all going, eh, do you go to the hospital or do home therapy, eve ry days a bonus. Just been to the cinema saw paranormal with my little Leo, oh it was funny scary parts too, but its nice to get out, today's weather been nice, but still wrap up warm, don't trust it out there, don't want anymore bugs, I have fantastic sisters who help us and I am so grateful, sometimes get so tired, how do you find the treatment sue, thank you for the chat sharon


annette19 4 years ago

Hi , I have had cvid and siadh for over a year now after contracting non hodgkins Lymphoma,Chemotherapy treatment started in october 2010 til feb 2011. I don't know if the chemo damaged my immune system but seems likely I suppose, the Dr's cannot say for sure if that was the case. I have cronic fatigue and rely on my husband for eveything, also I am taking 50 tablets a day and have a weekly dose of immunoglobulic (sub cut). This I have at home administered by the cancer nurse. I did have iv immunoglobulin but I came out in a rash all over, so that had to stop.

Recently I had pneumonia, so to prevent this happening again I have to have a monthly dose of pentamidine adminisered at the hospital, which I hate. I am just so thankful for the great British NHS as all the treatment is free,

Since all this started I have lost my sence of taste and smell, therefore I loath mealtimes because everthing seems the same and I cannot tollerate dry food due to a lack of saliva.

Regarding the comments about cvid being genetic I find that difficult to believe as at the age of 61 and never had an illness in my life, where did all this come from. Annette


Sharing 4 years ago

Hy Annette I feel so sorry you are through such an alwful time, it isn't easy eh, living with cvid is hard, I had another transfusion Friday, started shaking, god I didn't know what was happening to me eh, saw the doctor in the hospital, said too much thyroxine in my body, lowered the dose for me, it should stop the shakes, then I was coughing all that rubbish up of my chest, she sent of a sample, oh I get. Fed up with it eh, now Saturday got eye infection, went to emergency doctor said maybe conjunctivitis, could be emeritus, he said he wasn't happy, to come back if it gets worse Sunday got eye drops calmed it down, today woke up mouth full ulcers get so fed up with this, winters here keep warm, Hun, do you get physio help at home, you should ask doctor to help you relieve the mucus, as it goes onto your lower lungs, when I saw the doctor on emergency he was shocked he hadn't seen a cvid patient for years, I told him the loads of us eh, he was telling me its genetic and will be within the family's jeans, who will also be carrying it, and you are born with it, you get so many doctors say different, when you look for cvid if you are born with it you die, I don't know do you. Try to exercise your lungs, deep breats on each side the a cough try again and do a big huff, you will be amazed how much you can shift, get your husband to place a small towel on your side when you lay pat towel gently lots times to release all the rubbish from your lower lungs, lots of Vick in hot water helps, good luck sharon


Sharong 4 years ago

Annette I got told it could be eye ritus not emeritus spelt that wrong, hopefully it's only conjutivitus. Every days a bonus eye, take one day at a time hope you feel better soon Sharon


Annette 4 years ago

Hi Sharon, I do not have much problem with mucas, thanks anyway, but I do have a fungal infection in my mouth and that makes me feel worse than ever, Dr given me all sorts of meds to clear it up, hope the last lot of pills will do the trick.

I have another appoitment to see the immunologist on Wednesday, hope he has something positive to say, I am going to ask him about Misstletoe injections, I have been looking at the web sites regarding the treatment, it is supposed to help.

I do get a physio come round now and againto give me excercises to do but when I am feeling lousy I find it hard to do them. Today I am feeling so tired and I am due to have my sub cut tomorrow, at least the deep chills I used to get are more tollerable these days, perhaps I am getting used to them.

I managed to get out of bed today with the help of my husband and a walking trolley but I could just as easily stayed in bed, life is so hard, too much effort to do anything. Take care and hope your eye is better soon, Annette.


Angela 4 years ago

Hi everyone, I am so happy to find these post. I also have a hard time explaining to people. Most just don't understand that I am sick/exhausted one day & fine the next. Think I'm faking...

I was born with this, almost died several times, diagnosed at 48. I have had many benign tumors, tissue grew in my throat & blocked my airway. I had a trach for over a year, took 4 surgeries to remove & reconstruct my throat, doctors think it was caused by chronic strep infections. Constant sinus infections are a problem but my true nemisis is "Strep". Strep throat, strep bacteria in my blood = sepsis, staff infection on my leg, strep throat 9 times in one year. It wasn't safe to go out of the house or have company.

I had a viral infection that settled in me & triggered psoriasis, now psoriatic arthritis, fibromyalgia, & now lupis...oh joy! I am in pain constantly and have gained an extra 100 lbs due to the steriods & lack of movement while hospitalized. I was also in a position that dystrophied my muscles several times. Every time I would start to get better, able to wash, dress myself, I would end up back in the hospital. It was exhausting & I wanted to give up several times. I feel for anyone who is going through this & wants to give up, but please fight because there can be good health ahead for you once you find the right diagnosis, doctor, treatment & lifestyle.

I no longer allow steriods (unless I'm dying), I receive IvIg infusions every 2 weeks. I have a port in my chest, which is under the skin. So, I don't understand the scare of infection. It is more dangerous to get stabbed 8 times to find a vein. I eat only lein protien 5 times a day & only fresh veggies/fruit...unlimited. No restaurant food or even hospital food. I wash everything before it goes into my fridge and all of my fruit and veggies extra! I wear gloves to the grocery store. I wear a mask in crowds, don't touch anything & bought stock in antibacterial goods. Don't take baths only showers & use several different wash clothes for different parts of body bcuz I give myself infections! I always request antifungal w/antibiotics (stop problem bfore it starts). I get B12 shots, 5000IU of Vit D, and do water areobics 4 times weekly. Keep food, exercise & medical journal. I still need to lose weight but I haven't been in the hospital in 8 months...Yay!

I take tylenol or advil before infusion, love my home infusion nurse (hey Trina), take gammonex out of fridge night before and plan to wear pj's all day every other Tuesday. I read free magazine or blog, IGLiving. I had to learn my limits, stop before I get tired & stop trying to explain to everyone...some ppl don't want to get it. People who really care are on the internet or going to your doctor appt's with you trying to figure it out. Thanks to all the caregivers.

I hope this helps someone. Sorry this is so long. I left out A LOT...one of us should write a book! Peace & good health to everyone. aajai@comcast.net


sharong 4 years ago

hy annette oh bless you, good luck hope they organise the mistletoe injections for you, oh it is so hard hunny to get up, be positive don't let it get you down, you can also buy a tonic thats helps pick you up sometimes, i hate relying on my husband also, but we need them eh, i do feel exhausted in the morning hardest bit of the day, get as much sleep as you can, what a nightmare for you with the fungial infections, oh bless you, thinking of you keep your chin up be strong keep smiling, loverly to speak to you, the eye cleared up, then i had elergic reaction and my mouth tongue swelling, steroids, better at the moment don't know for how long eh, you take care let me know how you get on. sharon


sharong 4 years ago

oh my god angela you have had a terrible time, i don't blame you for wearing gloves and masks, lifes to special, i lost so many friends trying to explain this illness i have, good news hun you stayed out of the hospital, you don't want to be admitted in there, too many germs. still cant hear in my left ear, don't think my hearings coming back eh, lifes so different, but i wont let it get the better of me eh, i have antibacterial gel all over my house, shoes of when anyone comes to see me. shame you have been through so much, keep strong hun, lifes to special don't let it get to us eh, thinking of you have a loverly day sharon


Sharong 4 years ago

Well I've had a rough time since my last transfusion, I had eye infection, then steroids to get rid of it, then I had really bad tremors told my thyroxine needs to be reduced from 225 to 200 then more tremors more doctors then, reduced again to 175 to much thyroxine in my body, before I got to doctors, I had tremors my whole body was a nightmare believe me I am scared, then to be told only a panick attack I had due to the tremors, and thyroid being too low. God I get so fed up, I catch so many infections after my transfusions, then admitted to hospital the thyroid had upset my body, they think it also might be change of life aswell, oh my I'm so fed up, doctors say I get anxiety well what a surprise eh, enough coping with the cvid symptoms, let alone anything else, I just get to the stage where doctors think you could be wasting there time, I know I'm not, life is so hard to cope with eh, being normal don't know what that is, I would love to wake up happy no bugs, Hopefully doctors will sort this out for me, my foot is so painfully due to the mortons neuromas they can't operate, too ill, now the verucas still spreading very uncomfortable and don't know if they can't stop these eh, walking is difficult, but I don't complain unless I have too eh, but when there's too much thyroxine in your body you can get very unwell, doctors saw it happening didn't do anything until I got I'll with it, the tremors could be the doxycycline doctor on emergency told me to stop them, fingers crossed I don't get any more bugs eh, I'm such a happy go lucky person, don't let things get me down but this one did Sharon g


Sharongoodwins 4 years ago

Well amassing I had the tremors I was having either relate to the thyroid being so low or the doxcycline have same reactions, but then I was told I might be on the change, I'm just going through a lot of anxiety funny eh wonder why, thyroid low, also now just had to go to medical day unit, urgently just realised cortisol so very very low urgently get to hospital, sanatagen test show it was really bad over the weekend whilst I was feeling so unwell, the doctor at the hospital couldn't get hold of the on call doctors I saw, finally got to my gp, went through the tests go home go to bed await for registrar and doctor at hospital, to call me they were getting a bed ready, in accident emergency, then the call finally come through, all okay now, refere to endorinlogist for further reviews, so I was right ill for approx four months now its found at last, doctors put it down to anxiety, I think they need to look again at what's happening to me, now thyroxine lowered of antibiotics altogether maybe I can keep well eh


Lee 4 years ago

Have had the Ivig with resulting severe migraines lasting two months. Now on 75 mm of sub q and doing much better. Full of energy the first few days, normal for a few then fatigued with flu like symptons, then begin again with injections. Although this is a pain, I am very thankful that help exists. This is much better than the frequent illness and hospitalizations.


Justiceforall33 4 years ago

I'm interested in feedback in 2 areas:

1. Weight gain and battle if you have SubQ weekly treatment? I lose 2-3 #'s a week then gain 2-3 within 48 hrs of weekly, self-treatment. Anyone else have similar gains? Has anyone found a way to lose?

2. Severe arthritis and inflammation. I am 46, male. Am on my 5th anti=inflammatory and haven't found anything that helps. I don't want to go back on steroids (which will definitely help the inflammation, but I'll also gain tons of weight and muscle). Anything work for anyone?


Theresa 4 years ago

Hi, Lee!

I had terrible migraines and fatigue with one SubQ I was on. My doc switched me to another and VOILA! No migraines. Admittedly there are trade-offs - other side effects that I tolerate better than others, but the key is to try them all and be sure to pre-treat: TONS of water the day of treatment (even slight dehydration makes it much worse), Benedryl 30 mins prior, and Tylenol. That's my cocktail.

Good luck to you. Hope you're feeling better soon.

My big question is this: My doctor felt like I shouldn't get sick as often as I do now that I'm on treatment. Do you all get sick a lot still?

Thanks for the input! :)


AudraS 4 years ago

I received my diagnosis yesterday. I'm so confused! I am 45 years old and have been relatively healthy, I have had few bouts of bronchitis, sinusitis, and pneumonia a few times over the years, but nothing the past three years besides one recent sinus infection. I originally saw the doctor because I was (and still am) having random break outs on my hands, arms and legs of super itchy welts that go away after a day or two.

How reliable is the testing? My Pneumo Sterotypes are all below .20 except for 5 which is 3.57 (guess I’m an overachiever there :))… where do I begin??? Did any of you ask for second opinions?


Sharon goodwins 4 years ago

Hy audras all the signs bronchitis pneumonia sinusitis. Oh it's very scarey when you are first diagnosed, always ask questions keep asking, you will get the answers, the clinic s the best place to ask, or the doctor, say I'm not clear I would like to get the answers, they will advise you as much as they can, if you feel unwell call doctor don't wait get antibiotics to clear any infections, don't worry how many times you call them, you need to keep as well as you can, best of luck I'm on my transfusion tomorrow I dread it, but don't worry, just ask and get answers, or google the questions


Sharing 4 years ago

Well just had my transfusion yesterday, feel heaps better today, got me energy back, it's lovely to feel well today, just visiting my sister relaxing being thou rely spoilt, been to the beach fantastic time, nice to get up and be healthy, spending my weekend with my two sisters just relaxing, hope things are getting better with me know.


Joe 4 years ago

I love to hear that I'm not alone. I'm 14 and CVID has been tough.


Anne 4 years ago

Traveling to China this summer for a month or more and wondering if I will have any issues bringing the supplies for my sub q hizentra into the country. Any advice would be helpful!


Sharon g 4 years ago

Joe you are so brave my little boy is ten, I was told he's on the border line of cvid he won't let anyone give him any more needles, I don't blame him, I just try so much to keep him well. But you will feel heaps better full of energy, and you can have as much fun in life as everyone else does,

I just say every time a bugs here, this is not going to get me down, keep smiling, be strong, every time it gets easier, they can use Elma cream, so don't be afraid to ask, it will numb the area where the needles go in, ask lots of questions don't be afraid to ask, I ask lots they must get fed up with me, I have lost my hearing on my left side but being referred to hearing department, as long as they can help me to hear I will be happy, well done joe keep your chin up, Sharon g


Sharong 4 years ago

Anne why don't you call the Chinese embassy they will tell you, or the clinic, best to know before you travel, you may need a doctors letter to take with you. Hope you have a loverly time, and it all works out for you Sharon g


JonniBalog 4 years ago

I was diagnosed with hypogammaglobulinemia in 2007. I am 55. I have autoimmune disease and my thyroid failed in 2002. I also have severe vitamin deficiency from malabsorption and hormone deficiency and severe osteoporosis. In 2007 my primary doctor sent me to a hematologist because of low hemaglobin and prolonged low white blood cells. The hematologist did labs and a bone marrow biopsy and found an immune disorder and sent me to an Immunologist. He did the usual tests and genetic studies which showed an inherited immune deficiency. From my understanding it is a marker on chromosone 6 which is not an abnormality, just a pattern seen in other people with the same illness. My doctor put me on rotating antibiotics. They are: Bactrim DS, Amoxicillin, and Doxycycline. And by the way, Doxycycine stopped the malabsorption syndrome but didn't reverse the damage caused, malabsorption of nutrients. By the time I learned that I had such bad vitamin deficiencies, I was suffering from brain damage which was caught in time to reverse most of it by taking mega doses of B-Complex, Vit C , and a multi-vitamin as well as a B-12 shot a week. I'm an RN so I administer it myself. When your short term memory is lacking nutrients and is almost non existent, you tend to forget even what you just said or heard. Also having chronic ear infections for which I take ciprodex, I have equillibrium problems. It is important to have solid healthy relationships with intelligent, open minded people because you need help when you have all this and have to try to explain something you can't communicate. Last time I saw my Immunologist, my WBC was normal, my lung capacity went up to 100% (I was on 3 asthma meds at one time, now allergic asthma is gone), Hemaglobin was normal as well as the CBC (neutrophils, etc) and bone pain was managed well on suboxone. By the way, I read an article on the use of naloxone to treat pain in some people with immune disorders where their immune system attacked pain meds as if they were bacteria and naloxone was used and prevented this from happening. So that would explain why suboxone worked so well for severe chronic pain. My primary doctor treated the bone disease by correcting hormone deficiency ( had oopherectomy and TAH in 95 due to endometrial tumors and stopped taking supplements) with pellet injections of estrogen and the female dosage of testosterone(which stimulates bone regrowth). Since my diagnosis was 'mild' I can't imagine what people go through with a worse case. I hope this helps someone. Please excuse my poor writing style and spelling errors. That is a permanent lasting effect of vitamin deficiency. If I forgot, it took 2 years to regain almost normal brain function. My ADD is severe now though whereas before the thyroid failure it was just an interesting part of my personality.


Peggy 4 years ago

My father, sister, son, daughter niece, a grand-nephew and I all have / had CVID. Possibly one or two of my grandchildren are victims. Most of us were diagnosed in 1969 as part of a human genetics study. Chronic sinusitis and strep infections have plagued my daughter, niece, and her son. My father died at 67 from complications of CVID--- abscesses in injection sites--and failure to thrive. Our gamma globulin levels vary. In 1969, I was a research patient at UCLA because I had no gamma A. At present, my A is normal but G and M are dangerously low. Hence, I have sub-cutaneous infusions. Tomorrow I will have the sixth treatment. I have practically no side effects except fatigue for about 24 hr. after the treatment. Then I feel much better briefly but continue to suffer from fatigue until the next infusion. I hope that in time the fatigue will lessen. I had a heart attack in August. My heart has recovered, but the rehab was compromised because of my limited energy. I have taken to doing most meal preparation in the morning so that at dinner time I can put the food on the table and collapse. I am 72 and have to be grateful I have had escaped from complete debilitation earlier. Nonetheless, I sure would like to have more energy. I hope a couple months more of treatments will help.


Christine 3 years ago

I was diagnosed in oct of 2011. After 4 yrs of going from doctor to doctor it was a relief to at least have a name for what was wrong with me. Explaining to people is almost impossible, I am tired of people telling me what I should do to get better. The reality of it is I won't, I was once an avid exerciser, loved running, hiking anything outdoors. Now just having the energy to go to work everyday is a feet in itself. I am on my second round of ivig. Headaches everyday,pain in my spine,legs and feet. Starting to have pain breathing. I am sorry but this sucks. I know there are alot of others who are worse off. I am truly sorry but it shows me what I have to look forward to . When I do have a good day I almost want to keep my fingers crossed that it will last but it never does. Fatigue all the time. I am hoping this round will afford me some relieve. Fingers crossed


April 3 years ago

I just got the news today about having hypogammaglobulinemia which was shocking considering I was seeing the doctor for biopsy results to learn if my Non Hodgkns has returned or became indolent lymphoma. I have been tested for the past 6 years for every disorder in the book from Sweet Syndrome to Lupus. Finally my new oncologist figured this out in THREE visits, after years of suffering pain, COPD, Fevers, and at 45 Chicken Pox a few weeks ago, at least too many upper resp infections and pneumonia to count. I felt relieved when I left his office that my cancer has not returned. But I have had no short term memory, worsening eye sight, I find it hard just to shower most days I can work, I can't get myself to work on time at 11 am. I always thought my symptoms were related to chemotherapy damaging my body. My doctor assures me he will help me feel better once I start Infusions. This only reminds me of post traumatic memories of trying to live while being infused. My veins are already shot, i live on coumatin because I developed blood clots that have been in Veins and Femoral Arteries which in turn turned into PE's (pulmonary embolisms) which caused the COPD. I sleep on Oxygen and By PAP (bu really only use the O2 because the By Pap sucks. WOW I am in shock!!!! After reading your posts it helps to know I am not alone, not to mention that this could happen to a child. You are a brave 14 year old, stay strong! I have had 16 surgeries and NOT one doctor picked this up after a hole needed repair in my heart but no one noticed it until I was 40 (which is how the blood clots traveled from veins to arteries). Thanks for reading and please share what you can to someone that has really tried to hard to keep up the good fight. I just did NOT expect to find anything wrong today and I know I am still in shock. I appreciate all of you who have shared. I'm scared that some PTSD symptoms will return from the infusions I had from chemotherapy 7 years ago. I have not been healthy since then I wonder if there related? --April


Kendrs Olivia 3 years ago

Hi i am almost 23 years old and i found out i had cvid when i was 22 months old. It was really hard on me when i was younger missing school hard to make friends and my parents were allways scared to let me do anything but i am doing ok now i have however ran into an issue they have stopped making the brand of ivig i have taken all my life and the new kind's i have tried i am allergic to so i am hooping to find something to do i have a port that i use but i wanted to say i think it good you wrote about this hope you are doing good


Sharon goodwins 3 years ago

Oh April you have had a terrible time, I had my brand stopped to five brands later I'm on flabagama think its okay , had a lot of problems not sure it's related to the change of brands, we will never know eh, today is Christmas Day I'm exhausted but the telephone was ringing I got up lots family and friends wishing us merry Christmas, we are having Christmas dinner tomorrow, just finished doing the meats, clearing up my little lad Leo so excited Christmas come at last lovely to see him smile, makes me feel good to make he's day. On my infusion Friday, been to hospital had my verrucas sprayed oh the pain excruciating for two weeks, glad that's over, they went black weeped, thought they were infected under the toe nails, lucky they were not infected. Looking good next one 28th jan dreading it, still no hearing left ear saw hospital need another hearing test then they can do what's necessary, the doctor said he saw a problem in the right ear, it really upsets me I can hear what people are saying it don't make sense, people don't understand. Seeing 6 to 8 weeks time, the neuromas got to put up with it can't do anything for me. Verrucas can't o laser to much money. Oh don't you wonder sometimes all my life I worked until I got I'll, trying to get help is a nightmare. My hip has been causing me problems saw doctor had. X-ray, fingers x not to serious, seems to be okay today, amazing maybe it's the cold. Well I wish you all merry Christmas and a happy new year Sharon


Sharon Goodwins 3 years ago

Oh my the pain in my hip. Findin it hard to climb in the car and gettin out of bed. The pain can't move today pain severe in my back and my right leg, and the hip, and arm and numb fingers, had my infusion yesterday, oh god don't feel good today sat at the hospital a and e dept, for hours to be told its not a clot in my leg, it's all related to cvid, I have a cyst on my hip I was told seein my Gp doctor Monday, given more pain relief my body so painful, I have no idea why this pain is causin me to have such a bad time. Doctor told me its all to do with cvid, wait till Monday, hot water bottles helpin most of the time and pain relief.


Sharon goodwins 3 years ago

Had a terrible infusion my hand so bruised had two sites, oh its so uncomfortable, oh numbness on my fingers. Pains in hip and back and arms, oh my god, too much pain, got pain relief told by the hospital doctor it's to do with cvid, seen my doctor today pain relief in form of cream, hope it calms down, I'm so fed up with the pain, fed up with moaning, the hip has a cyst on it, my hip is hurting, doctor may decide for e to have Physio, got to wait to see what happens . Happy new year everyone


Kathy 3 years ago

I was diagnosed with CVID 1 yr. ago at age 58. Had low IGG level and went to see a Hematologist. He started me on Gamma globulin IV. Just had it increased last infusion and I am feeling so much better. I also recently saw an infection control Doc. who said no antibiodics unless I am dying!! So I haven't had any for almost 2 months now. He said call him day or night if I felt I needed an antibiodic and he would talk me out of it. I was started on Noxafil for a bronchial fungal infection and it worked really well. I was also taken off advair inhaler for asthma and amazingly I am doing really well. I had terrible joint pain and body aches coming off the advair, but after my infusion in Dec. all that went away except for a little pain in my elbows. I am a nurse so am trying to stay away from sick people right now. I have not found an Immunologist yet, but I will soon. All my blood work was normal last time so am very happy about that. Praying for a cure for this disease. It is not fun. Hoping none of my children or grandchildren will get it. I have always taken tons of vitamins and supplements espcially Shaklee Liquid Lea boast energy level. It is yucky tasting but it works. 1 tsp. once a week is all I usually neeed.


Justiceforall33 3 years ago

Kathy - Find a good Immunologist. I've been diagnosed for 1 year, and I carry antibiotics with me all of the time. I travel for my job (lots of planes). I don't understand why you shouldn't be on antibiotics at all? By having them with me, I can put myself on a cycle every 6-8 weeks when I pick up an infection.

We are going to get infections. No matter what we do. Why wouldn't your DR want you to treat them....limit the antibiotics yes, but antibiotics save some of our lives.

Best of luck to you.


Robyn NZ 3 years ago

I also have my own supply of antibiotics and take when I need them. Have been managing this way for about 2 years and still no injection. I have an awesome immunologist and have bloods tests every 6months or if anything comes up. I travel about 200 kilometres for apps but it is so worth it. I am also part of a research that he and two others are doing so very interesting. I have to get him to explain the reports I receive as they are way over my head. Happy New Year to you all


Sharon Goodwins 3 years ago

I also have antibiotics every day to stay away from infections, you must have them at home Kathy, see another dr, you can't fight infections with cvid, you need help keep you away from bugs and germs, dr may save money, but you don't want to get ill you must have antibiotics on standby, as soon as you know you feel unwell you got it in time. Go back and ask for standby good luck Hun sharon


Sharon Goodwins 3 years ago

Oh my i had my verrucas treatment again, oh it's so so painful, please god they stop them growing under my toe nails and on my toes, and feet oh it's so hard livin with these, I had quiet a week this week, the new year my husband is gettin very unwell with cancer, and my little lad broke he's leg at cubs, oh let's hope, life gets easier, I haven't been feeling to well, with the hip and pains all over, and the infusion I had made me loose the use of my fingers they went numb dreadful bruise sing but keep smiling sharon


StephanieW 3 years ago

I am so glad I found this site. I was diagnosised with CVID just this past week. I am 34 years old. I have had chronic sinus infections, upper respiratory infections, and strange skin issues as long as I can remember. I have psorias of the scalp, interstitial cystitis, (had) endometreosis, carpal tunnel, eye infections, pneumonia three times in the past year etc. The most traumatic event happened with the most blessed event of my life. In August I had my daughter, Adelaide. I tested positive for the Group B Strep vaginal test in my 3rd trimester. Adelaide was born via emergency c-section. She was ready, I wasn't dialating, and she got sick - quickly. After the c-section I developed Group B Strep infection in my uterus and by my rectus mucles. We tried to treat it with iv antibiotics with a picline but we were unsuccessful. From August 1st to August 19th I was home for 48 hours. The docs eventually had to do a hysterectomy and I went home with a woundvac. I had the woundvac at home for more than a month. My docs say I am lucky to be alive. It sounds like we all are.

After clearing up the infection raging in my body from Group B Strep different ones came along. My GP recommended I see an immunologist after getting a sinus infection from taking down the fake Christmas Tree. I went through all the blood work. My IGg is at 41, IGa is less than 4, and my IGm is less than 6.

We are waiting to get approval from my secondary insurance to start the IVIG treatments. The first treatment will be 60g. The second treatment will be 30g.

I want to see my little girl grow up, I want to take her to her first day of school, I want to be able to give her advice on boys (or girls :-)), I want to teach her how to drive a stick, I want to play dress up with her, I want to watch her walk down the isle, I want her to push me around in a wheel chair as I yell at the nurses to bring me more chocolate!

That's what I hope these treatments will bring me.


3 years ago

Stephanie,

I was 38 when dignosied and my numbers were as low as yours. (except my IgM was ok) IgG seemed lower every time they tested me and the treatments have been remarkable. No longer am I sick from January to June.

Good Luck!


Alicia 3 years ago

I didn't have time to read all of the posts, but have a comment on one issue...

If you are having issues with your job because of continuing issues with repeated infections/illness/hospitalizations and exposure to others germs that still may not be prevented by IG treatment, remember that this is classified as medical disability. You may be eligible for short/long term disability from your employer. You are also entitled to Social Security and Medicare. I would NEVER advocate cheating the system. With that understood, and with IG treatment, there are still many people with Primary Immune Deficiencies who continue to suffer with continuing illnesses/infections due to working around people with communicable illnesses.


Sharongoodwins 3 years ago

I have been feeling much better not getting so many infections I tried Manuka honey 20plus it's really expensive or get 10 plus double up,in sainsburys supermarket its £10 on offer at the moment take three times daily oh my it does help, and cinnamon in your tea coffee drinks will help you as we'll just google it, I'm happy to try if it helps. I'm still on antibiotics daily and diffusion s three weekly. But if worths a try. Hip still very painful Physio tomorrow, to help me with the cyst, But gettin there


Katherine Taylor profile image

Katherine Taylor 3 years ago

thank you for posting this blog. I am 46 it took a long time to find my IGG Diffiency I was diagnosed with pernicious anemia I at age 35 I have been on 2 B12 injections per month for 11 years. The docs kept looking for Lupus instead found Hypogammaglobulinemia, the diagnosis was a relief. I have horrible fatigue and unpredictable stomach problems. I have been on infusions for 8 months, and it is hard. I started with monthly infusions and now I am on weekly subQ treatments. I have found that a positive attitude goes a long way, and I smile through not feeling well. I also eat a preservative free diet (no boxed or frozen food) and I avoid sulfites which are in wine, tuna and dehydrated fruit. With the sub Q infusions I get flue like symptoms, and I have spleen pain I hope that goes away. Sometimes I have horrible brusing at infusion sites which is just icky. We are all blessed to have a treatment. My HMO covers my infusions 100%. I am looking forward to seeing if Obama care will cover the treatments. I am also a children's illustrator and I donate artwork to children's clinics and hospitals. I know what is like to feel sick, and happy artwork can heal a soul. if you know of a center that needs artwork please email me ktaylor206@aol.com.


Julie 3 years ago

I'm getting ready to do my weekly ivig and all I'm thinking is how much I am over these weekly treatments and how I don't feel like doing them anymore. I keep finding myself waiting a day later ever week cause I just don't feel like being poked with anymore needles. It's so annoying... I've also been finding it very hard to talk to anyone about cvid. I get sick a lot and my best friend since I was in high school just told me that it's annoying and she doesn't feel like hearing about my sickness anymore so she doesn't feel like bein friends... I hadn't heard from her in a month and then she randomly called me and told me that... People don't understand this whole thing. I can't help that I have cvid.


Sharongoodw 3 years ago

Hello Julie I lost lots of good friends too. I learnt they were not friends at all Hun just using me. Sometimes they say hello I do the same. They would send the kids my house to see my little boy always using me to feed them and look after them when they are late home from work. But the boy said I'm not allowed to drink out of your cups mum dad told me. The truth is the used my husband and I. Glad to be rid of them I still have friends I have known 11years now they are true friends Hun. Listen I've been doing this since year 2007 spent most years admitted in hospital missing out on seein my little boy and husband keep going Hun be strong. I want to be out of hospital livin with cvid is he'll needles what a nightmare. But hey you. Smile look in that mirror be strong they know nothing friends no they are not Hun. You be strong okay be brave


misty5048 3 years ago

I am so happy to have found this page. I have a plethora of autoimmune disorders, and I can identify with each and every one of you. Sometimes I think that if I just push myself more, I would be able to do more...but it doesn't work that way, I just pay for it later. I have cvid, myasthenia gravis, hashimoto's, diabetes, restrictive and obstructive lung disease, terrible skin lesions, osteoporosis, and need surgery on my back, but doctors tell me I won't tolerate the surgery, so now I am on pain management. I have had 4 ports, which became infected, so now I just put up with being poked several times. I get iVIG every 2 weeks, 36 GM. My body will not tolerate over 82 drops per minute. I try to hydrate well on the day of infusion, take Benadryl and Tylenol before and during the infusion. I have been on this treatment for 5 years and it has helped. I haven't been in ICU for several years now because of pneumonia. The last time I was in the hospital they had to wash my lungs out and take a biopsy without anesthesia because of the MG. I did have to be transported by ambulance recently because of an asthma attack. I am also allergic to every antibiotic I have taken which compounds this issue. I understand what it is to wake most mornings feeling sick and I understand the depression that goes along with chronic illness, something most people do not understand. Because of MG I have central apnea ( my brain does not send the signal to breathe). I have an SV unit for that. I also have seizures and narcolepsy. I am blessed with a wonderful husband who drives me everywhere. We live an hour and a half from the infusion center so it makes him have a terribly long day. I saw my pulmonologist on Thursday and we are going to start the sub q treatment. I was so happy to read all your posts about that and am very excited to try it. Because of my dose of IVIG, I will have to do it twice a week, but at least I will be home. I am sorry for all my rambling, but so excited to talk to others who understand. God bless each and every one of you.


Sharon Goodwins 3 years ago

Oh you poor love you have been through so so much. My heart goes out to you. The infusions do make you feel heaps better. Good luck. I treasure every moment of every day. I have a very ill husband. with. Cancer very very ill. just treasure every moment we have toghether with my little boy. See him grow up. Keep strong


Misty5048 3 years ago

Oh my, and to think you have a young son! Last week we were told that my husband has prostate cancer, the very early stage. Luckily his type of Cancer is very slow growing, so we have time to look at all the options. He is handling the news quite well, but then he has had me sick for almost 17 years. I never thought I would ever be sick. I started working in the fields as a preschooler, put myself through nursing school, many years before these autoimmune things hit.

Do you do the sub q or the IV immunoglobulin? Which brand do you think is best?

Right now the new sub q one I am going to try is Hizentra. It will be 14 GM twice a week.

Thanks so much for taking the time to respond. You and your family are in my thoughts and prayers.

Do you have a lot of nausea and vomiting?

Joy


Lemon008 3 years ago

Hi, I have immunoglobulin M deficiency only, and so gammaglobulin is not helpful apparently. However, my immunologist is now giving me B12 shots which I find has really helped with the fatigue as well as the immunity. I would like to recommend it. I am also taking antibiotics at the onset of sinus infections as I get them all the time. Less with B 12 though. I was diagnosed at 38 and thought I was simply being weak prior to that. I have opted out to having children as it would be far too exhausting and too much exposure to bacteria. this disease is truly tragic, but am determined to enjoy life anyway. Thank you for starting this blog. Good luck to everyone.


Sharon Goodwins 3 years ago

Hy joy I have gamma flex 25grams I have been changed four times now, this is the better one i have had so many reactions to the others, sometimes life gets so hard, I'm not too strong at the moment eh, prostrate cancer they can keep it under control sometimes able to operate not in my husbands case they operated on osthegus cancer early think 2002 then they say they can't operate now to near certain organs, oh my we have had any tears here not been easy eh, he had a liver blockage stent put in now another operation same procedure, another problem bladder operation second time, now in the pancreas and lymph glands, oh it's so hard he's been so ill, my heart goes out to you eh, he's been fighting cancer 9half year now, my little lad knows daddy's not well, we take one day at a time I have. Close family, all help, I had my drip last wednesday only took 6half hours this time, u was exhausted but now down with a asty cold antibiotics will help, good luck Hun thinking of you too sharon


Sharon g 3 years ago

Onmy Iv transfusion today. I feel so tired today. My husband has too much kemo in he's body he's two operations are on hold. He has been so unwell shame. Such a worry for him this is the worst ever please god we get good news. My little boy has had so many ellergic reactions went to Butlins he had a ellergic reaction. And has had another one he had doctor out thought he had meningitis.ambulance hospital. No just another reaction. Then couple days later face swellin another reaction. Then another reaction just another allergic reaction. Oh my he still has swellin on he's arms. However told to have piriton and cetrizine he will grow out of it. It Has Been so hard seeing my little lad. Havin so many reactions. Worried hes friends might see he's swellin on the face. I pray to god it clears. I just need good news for my little boy and husband. I just carry on with everyday but I am tired but just keep smiling


3 years ago

Hospital will no longer allow my infusions at the Dr office, as they built a new Infusion Center. You also MUST have meds order thru their pharmacy. I just got a statement from them and they charged 4 x's more for my gammaguard. We aren't talking about dollars- but thousands of dollars. I am currently 100% covered, but that could change. I see no reason to pay 9,000 more for the same exact meds. I called and could have no reason other than *hospital has higher overhead*. I am looking into alteratives places to recceive treatment. It's digusting.


Sharongoodwins 3 years ago

Try a London hospital to get advice or immunology dept st helier surrey 020829620000 ask for immunology dept for advice


Sharongoodwins 3 years ago

Had my verucas frozen again can't walk about 16 verucas hurt so bad gone black today, immunology doctor checked for me. Said they are getting there . On a crutch helpin me to walk, so much pain can't go anywhere.


Brian 3 years ago

G, Why sweat the cost if you are covered? When they stop paying, then you fight the fight. But as long as you are being covered, you are fine. There is no real way they can deny your treatment once it is covered. They may make you go somewhere else, or give you a different type, but they cannot deny your existing condition once you get approval. I wouldn't stress about it yet.

Julie, Sorry about your friends. People are lousy. I still have most of my friends, but none of them really seem to understand. And being a guy, they all just make fun of me for not being able to go out or whatever. Its annoying, but you find out that some of your friends are there JUST to hang out, and some actually care about you and your well being. Hang in there Julie.


Toxic mold girl 3 years ago

I too was told I have CVID but after 11 yrs of Iv treatment and sub q my health issues are due to toxic mold . My new immunology doc is treating my body with diet, supplements and anti fungal drugs My house had 2 toxic molds which I have been exposed to over 10 yrs when my health problem stated . So sad some doctors use cvid ad a cop out


lilly64 3 years ago

When I first found this site, I thought that it was from too long ago. However, I was "happy" to read all the comments that are still being posted very recently. I was just dx'd with hypogamma.... (you know the rest). Being referred to a hematologist/oncologist because I also have an enlarged lymph node on my neck. But I have gone through many, many infections in my life time. The one that is chronic to this day is my ear infections. At one point it got into the bone - mastoiditis - so I was hospitalized. However, I still have problems with that ear always being infected. And hand rashes out of nowhere. I have lost almost all sense of smell as well, but haven't really bugged my doctor for an answer on that yet. I had lung disease as a child and mono, but no lung problems now - thank God. But they do think other things - this lymphoma thingy lingering around is what they are looking at now.

But my major question is why, when my neurologist saw these results of the immune problem, why didn't he quickly get me to another doctor? The fatigue in my life right now is so awful that I am asleep more than I am awake most days! Any thoughts? I am calling right now to make the appointment with the hemo/onc.

I am very glad I found this site, and I will have many many more questions, I am sure... Peace to All!


3 years ago

Lilly- I would try and find a good immunologist to treat and test your immune system. I used to have chronic ear infections too. Too the point where I had a Doctor tell me I was too old to get them....um, apparently not- as I had one. I think they can be related as it could be started by sinus infections and draining into the ear.

I hope the lump is just that, a lump or a harmless cyst. Good Luck!


Sharon Goodwins 3 years ago

Oh had my transfusion yesterday. My breathing not to good today. It's goin to be hot today. I will have double up in my puffers today I feel so tired. And sick. I will try and make the most of today. Take my little boy out to cinema. My husband just come out hospital fighting more infections every other week. Very ill with the cancer. The verucas seem to be comin back. Havin that herendos treatment. Burning them off. There back oh what a nightmare


jobie 3 years ago

Hi I recently was diagnosed, the doctor stated that I still had some antibodies so they have put my on a maintenance plan. However, I still have alot of days that I feel awful then sent me to a rheumatologist who said does it hurt here here her? You have fibromyalgia, then sent me home with gabapenton. Should I find someone else I don't have insurance and am scared that is why they have passified me with a simple plan of action. I just would like to feel better sometime and right now is few and very far between. Please let me know what you guys think.


jobie247 3 years ago

Hi I recently was diagnosed, the doctor stated that I still had some antibodies so they have put my on a maintenance plan. However, I still have alot of days that I feel awful then sent me to a rheumatologist who said does it hurt here here her? You have fibromyalgia, then sent me home with gabapenton. Should I find someone else I don't have insurance and am scared that is why they have passified me with a simple plan of action. I just would like to feel better sometime and right now is few and very far between. Please let me know what you guys think.


Sharon Goodwins 3 years ago

Ask for a second opion. And ask to be refered to a specialist in the Nhs tell them you can't afford it private. Keep callin and seein different doctors within your go surgery they may refer you quicker if you keep complaining ask for a second opion don't be afraid to ask. It's your body they will push it for you. Ask the questions and you tell them u r not happy want to be refered urgently. Good luck


Janet 3 years ago

my daughter is 20. CVID diagnosed at age 3. Did 3 years of IVGGS had to stop because of severe side effects..horrible headache, weakness in hands and heavy legs lasting all day. We stopped at age 7. Migraines developed afterward. Went on IVGGs for a short time at age 17..Tried Dex to offset severe headaches. Helped but Stomach problems developed. Discontinued treatment. no desire for subcutaneous or IV gamma globulins. we have tried everything regarding premedication.


Lilly64 3 years ago

@Janet: I just read a presentation yesterday about the severe need for a GOOD probiotic, one that won't get eaten away by the acid going down before even reaching the stomach/intestines. The more I think about this, the more sense it makes. The presentation stated that the probiotics sold at pharmacies are not good at all and offer really no benefit. Of course this presentation was trying to sell their product. However, I wonder what real doctors think about this. The presentation specifically mentioned the fact that because of all the processed, antibiotic-induced foods we eat, it causes our immune system to become unstable because it harvests all of the bad bacteria in our digestive system. My stomach never feels good, and although I am in the beginning stages with hypogamma....., I want to bring this up with an immunologist. The last doctor I saw - the hemo/onc - dismissed me as "fine" because he saw no evidence of cancer. I suppose to him I am fine, given that he sees people who really are not fine because they do have cancer. However, I do not feel fine. So now I believe the next course is for me to see an immunologist.

I hope I gave you some "food" for thought; please let me know what you think. Peace...


Adina 3 years ago

hello there,

i was diagnosed with hypogammaglobulinemia at the age of 23 (i'm now 30). i opted NOT to have IVGG treatments, and focused on my diet. after a LOT of trial and error, i found that my health improved drastically on a very low carb 'paleo' diet. for the past 4 years, i've based my diet on vegetables and pasture-raised meat and eggs, cutting out all grains, starches, beans, and sugars (including fruit)-- it sounds very restrictive, i know-- but i haven't been sick since i started eating this way! (i had to take one round of antibiotics for an infected toenail... but i don't count that:)) i also have been focusing on my gut health- i grow my own water kefir, eat a lot of fermented foods, and take a good probiotic (natren bifido factor).

i'd love to hear if anyone else has taken this route, or if anyone has questions or comments.


Sharon Goodwins 3 years ago

Hy my verucas are spreading again so fed up with it all the agony and treatments gone through so far and now they are back.

I'm tired have my transfusions still trying to keep up as much as I can, ill husband do the best I can, try and get my rest when he sleeps not easy, but school holidays got to try keep up, keep my little boy busy. Every day is a bonus being as well as I can, poor husband fighting cancer not easy, but loverly read your messages, Sharon


Lilly64 3 years ago

@Adina: I posted right above your comment about the diet and probiotic issue. I don't think that this disease was ever even known many many years ago, mainly because there was not all this processed crap food that we put into our bodies these days. I actually have been through the same thing with my German Shepherd (and I mean NO disrespect to us humans here). We can learn an awful lot from what ails animals because their systems will not tolerate processed foods, starches, grains, etc., just as our bodies really do not tolerate it either. The difference is that the animal will die or will spend many times in the vet office for illnesses, much of them skin ailments. After a few years of trying to ditch the expensive pure food for the canned stuff, I had finally had enough of all the vet expense. Lo and behold, I put him back on the proper food - pure - and his skin allergies ALL cleared up within a week! His four paws looked like they had been through a grinder. Well, this is what happens to us as well, so we run to the doctor for all of these ailments that can easily be prevented by maintaining a diet just as you suggested. It really should be a no-brainer for many things that ail us, especially gut issues.

Where do you get your probiotic from? And, I swear I am not more sick because I drink fermented drink - aka, wine - every evening!

Shall we discuss further?


Adina 3 years ago

@Lilly64... yes! it does seem very obvious to me-- what you put in directly effects the running of the machine-- but i've had a very difficult time with western medicine in this regard. and i'm so happy to hear your doggie is doing better.

i get my probiotic from the local health food store's refrigerated section. i keep it cold at all times (even when traveling). i have found that if i take my probiotic pill with cold water first thing in the morning on a completely empty stomach that i have much better results with digestion- i think it gets through much faster, rather than dying in my stomach acid or whatnot. hope that helps!


3 years ago

anyone get cold sores? I never had them before, but was exposed this spring and now I get them every month. It's bad. This time, I had medicine to help, but my face still swelled badly and I still got them.


Reenie 3 years ago

How do you any of you afford the treatment? I was just diagnosed with CVID and i can't afford the treatment so i am not currently on anything. Are there any programs that can help?


Lilly64 3 years ago

@G: I do not get cold sores but I do have other skin irritations, painful skin irritations, mainly on my hands. I suppose similar to cold sores, these little pin pricks on my hands eventually swell up. The ONLY thing that gets rid of it (it stays dormant but I can still see the irritant), is a steroid ointment - ointment, NOT cream. I get the Elecon (or the generic) ointment and rub it into my hands for a few days. It is very stubborn and takes diligence to get it to go back to dormancy. I first got this rash about four years ago and ever since then, it flares every now and then - just like your cold sores. So possibly the ointment will help you because they don't sound like just a cold sore, more like what I have. I really hope I have helped you today.

@Others: I don't even know if I have CVID, but do have the decrease in my IgA and IgG, which gives me many of the same symptoms and issues as the others on this forum; that is why I am on here. I gave up trying to get anywhere with doctors, so I just try to take the probiotic and other natural things to keep me from falling asleep from fatigue, and other health issues. My current doctor asked me how my MS diagnoses was going and I told him about the deficient proteins. I say, "doesn't that go with MS?" And he says, "Um.. you have to have the deficient proteins.." Um.... Didn't I JUST say that?! I think he was embarrassed by what he just said so I let it go. My neurologist doesn't say much about all of this blood work as far as the MS dx or ANY dx for what I have going on. I am just SO fed up with getting anywhere with doctors, and honestly do not have the time for it! Thanks for letting me vent..:) Peace and Be Well, ALL!!


Johanne 3 years ago

I received the treatment 5 days ago. My first one. Mononucleosis and hypogamma. Since the treatment feel worse, nausia, extreme fatigue. Anyone experience the same after first treatment?


lex92 3 years ago

I was diagnosed with cvid at the age of 4 and I have been doing infusions on and off for about sixteen years. I have to take a steroid with the infusion because I get very extreme side effects. Yes I had nausia and extreme fatigue. I also got a very very bad headache, which felt like nails were being driven into my head. Reactions vary from person to person. Recently, I have been having upper respiratory infections and trouble breathing. The doctors are not exactly sure what I have but my voice is hoarse and I am having trouble breathing! I wish everyone luck with infusions and the treatment of this disease. Sometimes it feels as though their needs to be more research conducted!


Emily 3 years ago

I am currently in hospital in Brisbane Australia, having just been diagnosed with CVID. This blog has been really interesting and helpful to know i am not alone. After one infection after another in relatively short space of time and in particularly the past 2 years i finally have an answer. Start Intragam monthly infusions later this week and hoping i get relief. To all those people around the world who take time out in their lives to donate platelets and plasma THANK YOU from the bottom of my heart!

Take care everyone!


Sharon goodwins 3 years ago

I wish you both well, I have been on infusions for 7 years now, for months now swollen tummy so large looks like ready to give birth, no I was told enlarged spleen, ibs, divi colitis, cvid could be causin it, oh my I was sick food wouldn't go down, refered to gastric doctor, bloods all fine, one doctor took a stool sample can you believe for months now I have had helibactor pylori my I'm on 2680mg antibiotics. At last they found it, it was causin difficulty to breath. Enoboliser didn't work as I have asthma I'm a severe asthmatic, it's the tummy causin problems with the diaphram couldn't breathe. Two weeks antibiotics plus normal tablets back to see how it's goin, frightening


Sharong 3 years ago

Emily you will be very tired, just take things slow lots of rest sleep. Good luck I'm sure any side effects you will tell them straight away, and they will go slow on infusions for you, lex 92 ask lots of questions, get second opions, you know your body, if you feel something's wrong with the breathing go back to doctors I saw lots different doctors it took one doctor who found the helibactor pilori. Amazin took months up down doctors hospital, found it in the end, 2680mg daily antibotics fingers x they get me well good luck guys sharon


Sharon g 3 years ago

Joanne first time you may get giddy light headed, even sick, I had spinning onetime sick on a bus from transfusion, best thing if you can sleep whilst you are resting, sleep when you get home, it takes a couple days before you can resume normal duties, sit back relax chill, no point rushing you end up exhausted, your body is tired, you do not want to end up in hospital take time out for you, good luck sharon


Amber C 3 years ago

Hello all,

I am so happy to find this site! I am 30 years old and I was diagnosed with CVID 2 years ago. I have not had any treatment except antibiotics because my husband worked for a small company who kept promising to get insurance but never followed thru. He works for a different company now and new insurance starts next month. YAY, infusions...or so I think.

I have had pnuemonia about 6 times last years, ear infections, and all the other good stuff. I have some questions for anyone who doesn't mind taking the time to answer.

1. I have Blue Cross/Blue Shield and I was wondering: Do they cover subcutaneous infusions and what brand? Our deductible will be paid for but what do people usually get charged for these monthly?

2. In the last year my energy level has just dropped and dropped, will the infusions help at all? I really do hope so I have a 2 year old boy at home and he doesn't really understand "tired".

3. I have always maintained a pretty good weight because I used to work out 4-5 days a week, but I have found that every time I go for an hour walk I get Strepp or something fun like that. So, I have gained about 25 lbs (also because horrible digestion problems). Will this change at all with infusions. Im not asking if they will make me skinny but do they help enough so that I can start working out again?

4. One more, I have wondered if it is smart to have any more children or if there are complications with pregnancy when one has CVID. Any advice would be appreciated.

Thanks for all your help. This is all new and Im a bit nervous about everything.


Sharon g 3 years ago

Hello amber ear infections common in cvid I lost my hearing think about 7 months before it returned in my ear, they can't do anything other than refer you to a specialist. You can have children if you have cvid but again you need to speak to your Gp to see if any complication could arise, you don't get skinny with this treatment, I wish eh gained weight. Horrible digestion ask your doctor to test a specie men from the bowel, helibactor pilori test, it could be irratable bowel or divi colitis I have had these since I got cvid. Stomach swells so large so embarrassing. I do get very tired that's the illness Hun, keep smiling be strong, hope you get the insurance sorted soon. I don't know about a blue cross shield google it on your computer. Good luck sharon


Brian 3 years ago

Amber, coverage really depends on your location, insurance and ability to pay. I'm sure people here get covered like myself, others pay, and others don't get covered at all. You NEED to be your own advocate. Your Dr. may be able to help you, sometimes you can find a rep at a medical company that will walk you through it all to help out with coverage. If you have any questions, you can email me at chefbri3030@yahoo.com. Good luck.


Brandy 3 years ago

I have been getting IVIG via my port every three weeks for almost three years trying to become 'healthy' enough for a double lung transplant. The side effects are awful. Thankfully my doctors and home nurse are amazing about keeping me as comfortable as possible. The IVIG takes about five hours for me. I get IV doses of Benadryl before, during and after the transfusions along with IV Demerol and phenergan after. I don't know how y'all tolerate it without strong meds to help. Yikes.


Sharon goodwins 3 years ago

Oh brandy such a nightmare for you. Wish you all the best.


Lilly64 3 years ago

After being SO fatigued now for several months again (falling asleep at the wheel fatigue), and after my dx of hypogamma, I am again going to my primary doctor today. Still also have the chronic ear infections. The hematologist dismissed me when there was no cancer in the blood, but there were definite decreases in IgA and IgG, along with SO many other symptoms; he was basically rude and left me with no referrals, etc. I have printed out articles of the CVID to take with me today as well as my blood test results (he should have them but probably has never reviewed them). I can no longer be a deadbeat to my children and I need to get my life back. I sleep most of the day and I am very upset that no doctor (neurologist, hematologist, and primary) has taken the time with me to figure things out. I made a promise to my 8 year old that I wasn't leaving the office today unless we had a plan to make me feel better! I am weary....


Sharon Goodwins 3 years ago

Oh bless you lily try dark choclate and choclate milkshakes give you lots. Of energy. Hey it's so hard feeling like this. Good luck. Hope they help you soon Sharon


joan Alexander 3 years ago

have Cvid,Have severe sinus problems,diarrea and weight gain and bloating like to find a good diet to help these problems Would like to hear from people with similar symptoms I am 62 years old


Howard88 3 years ago

Thank you for this blog! I was diagnosed with hypogammaglobulinemia 8 years ago at age 53. After directing school choruses for 32 years and using my 10 sick days almost every year, I had 2 sinus surgeries and MRSA. Not realizing just how sick I was, I checked my pharmacy records. I had 12 courses of prednisone and over 20 antibiotic treatments in 2 years. My ENT and infectious disease doctor pushed for my testing. After 5 years of IV intravenous treatments, I had a port inserted. It lasted about a year and the end unfortunately bent. My second port goes directly to my jugular vein. I am probably the healthier patient in this blog. Since I am a church musician/pianist/organist/conductor I had to stop having IVs in my hands. The ports have worked well. So did retirement! I had severe migraines after several treatments and have insisted a drip under 110 which helped. About 8 months ago, I developed a palsy in my left eye. At my 101st treatment, I had a reaction; the room began to spin and I lost feeling in my left arm. Since I postponed my treatment, I had it today, where I met someone with the same treatment. Maryann told me that she had eye problems and her immunologist insisted that she receive gammagard instead of the generic IVIG. I hope to do the same in the future to see if it helps my eye. It is really inspiring to know there are people who have had treatments for 25 and 3o years! My prayers go out to all of you who must suffer such severe symptoms! Thank you for all of your assurances and for sharing your symptoms; this blog is a vital one!


sophie 3 years ago

I have been diagnosed im 27 and im from Scotland United kingdom. Im so so glad to hear of others with this. I will be starting treatment in january. Its prettu daughnting. X


jmmcp123 3 years ago

Hello All!

I am so thankful I found this page. My husband who is 27 just got diagnosed with CVID and am panicked. I googled and looked up so much that my head is spinning. I read though your comments and am sorry you are all having to go through so much but its reassuring to see how positive and optimistic you all are.

We met when we were 18 and have been together ever since. Married for 5 years. Ever since I've known him he has always been sick more often than I am but not to the point where I saw this coming.

He had meningitis at 23 (which developed from a sinus/ear infection). Thank God he passed that. Hospitalized for a month and on home antibiotics for another.

Then just colds here and there that would take him longer to get over than most people. This year he has had two major colds, one of which turned into pneumonia. I finally said that its we need to have a battery of tests done and see what's happening.

Primary doctor did tests and his numbers were a little low, some high (white blood cells). So we were refereed to an allergist/Immunologist. More blood work, and today we got the call that yes be believes CVID. Before we start treatment (which we have not even discussed in detail) he is running another batch of blood work to be safe.

Does he need to be on IVIG? Is a life with treatment or without better?

I am scared for so many reasons. I don't know what the future holds for us and I love this man with all of my heart, I can't stand to see him in pain, let alone think of not having him around. I called our insurance company and they have to look at so many things to approve IVIG. I don't get it (who are they to decide). If they do, its for 3 months, then more testing to see if he really needs it.

From what I'm reading here, this is a lifelong treatment, I am so scared.

How are all your spouses dealing, and what can I do to make it more bearable for him. I have yet to stop crying.

Thank you all, God Bless and I hope you all have more good days than bad.


Lilly64 3 years ago

@jmmcp123: I am SO sorry to hear of your husband's illness. It is very very hard to see your spouse go through illnesses (I know very well). Mine doesn't have this disease, but a few debilitating issues. I hope that the people here who are actually going through treatments or that have actually been diagnosed can offer you some comfort and insight! However, I have a few questions for you, and I hope you can answer them without me being too intrusive at this difficult time. When you say that your husband's numbers from blood work were a little low, a little high, can you tell me which results those were? I have had chronic ear infections for over 16 years now, but I also have the blood work that is "off." The IgA and IgG proteins in my bone marrow are decreased; does this sound familiar to you? I also have anemia from low red blood count (but not iron deficient). I have recently been tested for lymphoma because there is an enlarged node behind my ear, but not large enough to do a biopsy. So the doc said to wait and watch it. So, if you can help me, please please let me know what his blood work looked like. I have seen just about every doc, except an immunologist. But I also have no one "quarter-backing" my prognosis for SO many issues that I have. My GP is rather useless and doesn't take my symptoms very seriously, although my blood work is actually way off. I think this is just the way it is with woman still, unfortunately. They think I am depressed, etc. The fatigue alone from my anemia is killing me. So after my lymph thing, it is back to my GP to kick him in the butt and get going with making me healthy. With my insurance I can just go to an immunologist so that is what I may end up doing. God Bless you and best of luck! I know, as you said, sometimes the treatments are worse that the colds and other health problems he has. So I truly hope you and your doctors (and the people here) can help you make that distinction for a good plan! Thanks!


jmmcp123 3 years ago

Hi Lilly64,

I don't mind answer questions, these were the last lab results, but they are running another blood test today to verify

his # normal range

Total IgG less than 60 700 - 1600 mgdL

IgA more than 15 91 - 414 mgdL

IgM more than 11 40 - 230 mgd

We are very worried, scared and just hope he does not get the really bad side effects. I am mostly worried about getting the infusions and him feeling worse than he is now (like I said he doesn't feel that bad now, just colds that go away with antibiotics)

As far as the bone marrow results I have not heard anything about that with my husband. The only thing we know so far is the blood work. Maybe you can try to see an immunologist and see what they say, or what you can do about the fatigue.

I am thinking about seeing another doctor to see what is really necessary or what is a better course of action. if its good to start infusions now or wait. Also, there is the issue of insurance and if it will be covered.

Good luck to you as well, and keep me posted. This is definitely scary but there are always answers, we just have to find them.


Lilly64 3 years ago

@jmmcp123: Thank you so much for taking the time to respond to me. About his blood work. Do you mean that his IgG is at 60; his IgA is 15; and his IgM is 11?

Mine are no where near that low, but still below normal of the limits that you listed.

God Bless and please keep in touch!


jmmcp123 3 years ago

Yes, I believe that IgG is around 60, Iga is around 15 and IgM is around 11. They are doing another test to verify these results. They are very low, almost 0 on the normal range scale.


3 years ago

jmmcp- my tests were that low. 52 for IgG and less than 4 for my IgA

I have been going 2 yrs now. There are like 5 other ppl getting the same treatment from my doctor and I think there was someone new this month.

It is a treatment for life. The insurance companies will require testing to see if he needs it- and it will show he will-- so they should cover it. My company requires documentation every 3-6 months I think, but the dr takes care of that for me.

likely, he will be offered one of two types of treatment. Either thru an IV or subcutaneous. I do IV once a month.

I am doing much better now than before the treatment. Sick much less. I have more energy than I did before(but still suffer fatigue) I used to come home from work and sleep. I work the day after treatment 99% of the time and I have a very active and physical job. So, it's not like I am just sitting at a desk. The treatments will keep his levels within acceptable range until the next treatment- but some adjustment will have to happen. I don't mean to sugarcoat any of it. It's tough. When I have a treatment- i get some headaches and it wipes me out. My nurses had some good advice for me. I am a 42 yr old woman.

But the point is-- he will be better off with the treatment than w/o it.

If i can help in any way- let me know. G


jmmcp123 3 years ago

G, Thank you so much. It is definitely reassuring to hear that you are doing so well on the treatment. I know it won't be easy, I just fear for the possible side effects from treatment. I am reading that some can't work anymore, they are house bound and worse off than before. And I am also worried about all the possible things he could get from the IVs, HIV Hep C. etc. I am sure you know the risks.

I will be here and do as much as I can to make it easier and more bearable for him.

He is just worried about life drastically changing, not being able to travel and live a normal life as we have until now.

We are at the beginning stages and trying to figure everything out with insurance and everything, I don't see how anyone would afford this treatment without it. I also wonder if they can drop you after a year or so. The amount they will end up paying out will never be worth it for them considering that this is a lifelong treatment.

Also, the immunologist he was referred to has only 6 yrs experience, so I don't know how much he has dealt with CVID. Not sure if we should look for someone with more experience. I also sent him results to some immunologists that we know (they are not in our area so we can't go to them) but they said that some people don't need the IV every month it can be done every couple of months, etc. Not sure how that would work since the lifespan of the plasma is only 3-4 weeks.

Any information you can share would be greatly appreciated. I hope you continue to do well on this treatment.

J


Lilly64 3 years ago

@jmmcp123: As far as the CVID itself, I cannot offer much advice since I haven't been dx'd with it. However, I can put my "two cents" in about insurance. If you live in the US, then part of the new health care law that actually took effect a couple of years ago, is that the insurance company cannot put a cap on cost anymore. They also cannot deny you for a pre-existing condition. But I am not sure where you live.

I can also offer you some empathy for having your life completely changed due to illness. I first became sick eight years ago with female problems and then back and neck problems. I went through three major surgeries within ten months time - completely alone! My husband was having some sort of mid-life crisis and did not care for me one bit. That's all I will say about that since I could write a novel about it (and actually may do that!). However, then HE got sick about five years ago with debilitating back problems. Guess where I was.... Yep - right by his side the entire time, caring for him like a nurse post-op, even in the hospital when the nurses weren't doing their job, I was right there giving him water, helping him to the bathroom, etc. This was for two major surgeries and countless procedures. And I am still here, caring for him because he is basically "house-bound," as you call it, even after all of his procedures to fix his problems. Our lives have changed dramatically; I mean, nothing is how it used to be, and we are just now trying to mend the fences of our broken lives. We just celebrated 25 years of marriage and have three daughters, with the youngest being only eight years old! We are financially broke, on disability income, and have debt up the wazoo.

I put the rest of my health care on hold to care for him but now I am trying to figure out what is going on with my body (hence, the hypogamma dx. or CVID symptoms). Guess what? He is still not supportive of me and I still go to the doctor by myself. He is always more sick than I am, in more pain, etc. My wifely and motherly duties never stopped - even with the extreme pain I had before one of my surgeries. No, I am not a martyr, just strong I guess (as everyone I know tells me I am). Someone has to take care of things and he gave up. He needs mental therapy in a very bad way, but refuses to go. So I don't know where we will go from here.....

So what do I mean to communicate to you with my "sad" story? You and your husband need to get mental counseling throughout ALL of this, and begin now. Consider it part of his treatment plan. One of my husband's doctors told him this, but he didn't listen. It is a crucial part of the healing process just as your husband's injections will be.

You guys are too young to end up like we have so please, please take my advice. I wish you nothing but good health and future security during this challenging time... Peace :)


3 years ago

jmmcp- Just so you know, I did switch immunologists between my diagnosis and treatment- mainly because the doctor who diagnosed me jerked me around too much. I will spare you the details. Don't be afraid to switch, if you need to or to consult another immunologist.

I know other people do go every 3 weeks or a month or longer. The subcutaneous method, your husband can adminster himself at home and currently- it's once a week. My doctor is part of a trial where the subcutaneous is every three weeks. I was offered to be a part of it, but declined. The blog above details subcutaneous treatment. I chose not to do it, so that would be more informative. :-)

I don't think the insurance can drop you anymore. All in all, I don't think your lives will change that much. I think it will get better. After all, your husband won't be as sick as much and all of you(drs included) will know what you're dealing with now. So, the times he does get sick, and he will, it will be better managed.

When treatment starts- if he goes with the IV, it does take a long time. Mine is about 4 hours. My 1st one was even longer because I had a bad drop in blood pressure and they had to stop and made it even slower. I think that was a combo of the treatment & me kinda freaking out about it. Either way- bring water and snacks. My nurses say that the treatment eats away at your blood sugar(over simplified for me, I'm sure) and you should eat something and hydrate.

Good Luck and let us know how everything is going!


Joe M 2 years ago

I'm approaching 59. I was diagnosed with CVID in 1983. I received my first IVIg infusion April 1987. The blood supply was so bad in the early 80s (HIV, Mad Cow disease) my doctor was concerned about exposing me. I'll be celebrating 27 years with the great nurses at my local hospital this spring. I've experienced it all. Two years ago, I came down with a sinus infection that I couldn't shake. When I had my annual physical I had gone from 155 lbs. a year earlier to 140 lbs. Then my blood work showed an elevated level of enzymes. This had happened 10 years earlier, but my system rebounded. I was also experiencing fatigue at the end of the work day. My doctor thought I might have cirrhosis of the liver. I was referred to a liver specialist. What I was about to learn is that around the age of 60, CVID patients (85%) will experience portal vein hypertension. I was diagnosed with nodular regenerative hyperplasia. On Oct 12, 2012, a vascular radiologist performed a TIPS procedure. It's a non-invasive procedure where blood that moved through the liver by way of the portal vein is by-passed (not entirely) through a new vein created during the procedure using a Gore-tex shunt. 14 months later I still struggle with fatigue. I lost significant muscle mass before the TIPS procedure. My weight was down to 115 lbs. My weight has settled in around 125 to 130 (I'm 5'5"). My waist went from 33" to 30". I've been sick since I was a kid. Ear infections, sinus infections, pneumonia, etc. I always got sick when swimming and surfing. I own my business with my wife. Financially, we're fine. To stay one step ahead of CVID you have to make a lifetime commitment. Watch what you eat. Avoid salt (less than 1500 mg daily). Avoid eating out. Get lots of protein (not just meats and eggs but nuts, seeds and beans). Get your sleep whenever you're tired. Naps help. Exercise. Be good to yourself. Don't look back. It can be depressing. Don't look forward. It will make you anxious. Live in the moment. You'll feel bad some days. You'll feel good other days. Focus on what you can do, not on what you can't. Good luck and good health my friends.


sharongoodwins 2 years ago

hi joan i got bloating in my stomach, after approx seven months i was told i have ibs and divocolitus they found helibactor pylori, ask for a test, i have been on antibiotics for months 2680 daily i had a camera to see if was clear no back on them, i looked pregnant doctor said not many doctors like to do the test. i still have a swollen tummy but, i know they will be able to help me. get the test ask your doctor helibactor pylori bowel test. good luck sharon


2 years ago

Hope the new year brings better health, Sharon.


jmmcp123 2 years ago

Joe M thank you for sharing your story. I always interested to hear what others have and are experiencing with cvid.

My husband as I previously mentioned was just told about a month or so ago that he has it. We have not yet started the ivig because I would like to get a second opinion or another doctor to do lab work. While the symptoms are consistent with what he has been experiencing his whole life (always sick, etc) I would still like to see another immunologist. The current immunologist he was referred to by his primary is pushing and pushing for him to start the ivig ASAP. My question is, he has been having it his whole life (he is 28) so how would another two months affect him that we can't wait. We have an appointment with an immunologist that does research and has seem cvid patients for over 30 years, and we would feel a lot better having that second look. Another thing, we asked his current doctor if there are any foods, anything he needs to watch out for, what we need to do to prevent infections etc. And his answer is "nope" nothing, eat whatever you want and just start the IVIG. He says if you end up getting lymphoma or other things, heart attack, complications from the treatment we will cross that bridge when we get there. I don't know, just praying for a miracle. I know we would both feel better having a second opinion, we just have to wait another two months because the other doctor is so busy.

G - The insurance did approve for a 3 month period, then they want to see more tests. We are paying ridiculous amounts in premiums per month so I am glad they approved, but I still don't know if we will have additional out of pocket, I have to check. Do you feel that you are better with the treatments, than before? (just curious to see how you feel about it). The only up side my husband sees is the potential of not always feeling sick.

Did you all start treatment as soon as you found out you had cvid?

Happy New Year to all!!! I hope you are all doing wonderful in this new year!

J


2 years ago

J,

It took me a year before I started treatments- but that was more because of the immunologist and his incompetent behavior than anything else. I was also hesitant to accept the diagnosis. It's scary. I often think- well, who knows how long I have had this and I made it this far. Doctor who diagnosised me said I was lucky to be alive and I benefited from *herd immunity*. He was very big on trying to scare me. I know some will argue- but there is no evidence I've *always had this* and there is some that suggests I didn't. I had a thymoma(tumorous thymus) which one doctor believes caused this. Technically, I have Good Syndrome(thymoma with Immune deficency). I did have numerous sinus infections, ear infections, etc... as a kid.

If you feel better with a second opinion- go get one. If your husband wants to start the infusions- go for it and see how he feels after a couple of months. I have a feeling that if his blood tests remain the same- everyone is going to say the same thing. It's important you have a doctor you trust. I left the 1st doctor...and the 2nd immunologist referred me to a 3rd doctor because she didn't do the needed treatments. All of the doctors saw my numbers and agreed I needed treatment.

I still do get sick. But I haven't been as sick as often as I was before treatments. Honestly, I was sick so often I just accepted it as a way of life. But I haven't been AS sick as I used to be. Often, I get sick at the end of my infusion cycle. Sometimes, the infusion is enough to allow me to fight off the infection w/o drugs. I believe I do have more energy. I used to come home from work so tired I would fall asleep immediately. I still get tired, doctor says that will probably always be the case, but I am much better than before.

I hope this helps. Believe me, I know it's scary. I try to accept it and just live my life like nothing has changed(except for the better).

G


Lilly64 2 years ago

To All: I know I have posted many long comments here, but I guess the bottom line questions that linger for me are the following.

1. How low are your numbers for IgA and IgG? (My IgM is fine). My numbers are in the mid-500's and I am wondering if any of you have those numbers because I know they are not that low at all when compared to some of yours. But do any of you have numbers like mine?

2. I had a neurologist run the original blood work that came back as having hypogammaglobulanemia (with the numbers I indicated in No. 1). He sent me to a hematologist for further work up. When no cancer was discovered, the hematologist patted me on the head and said that I was fine and that cancer wasn't causing my numbers to be low, and that frankly they were not that low (I know that, but nonetheless, they are not normal). I was referred to this doctor; I never went to him with the intention of getting a cancer diagnoses. But he was so condescending in the reason as to why I was there to see him! Again, I was referred to him because of the hypogamma.... He also dictated a letter back to my neurologist and PCP indicating that he doesn't think the hypogamma... has anything to do with my symptoms (extreme fatigue, constant ear infections, muscle spasms in all of my muscles, etc.). So that was that - end of story for the doctors, I guess. The original search for all of my symptoms was to rule out other things for a Multiple Sclerosis diagnoses. The MS CAN cause these numbers to be low, but especially like my low. So my question is: Have any of you come across a MS dx from all of this, or have your doctors ever suggested this to be the cause?

I have never seen an immunologist and it is mainly because I have no one "quarter-backing" my symptoms. I go from one doctor to the next with no one following my case specifically. My neurologist was supposed to be doing this, but with some of my tests coming back border line and nothing definitive, they all toss up their hands! I guess what concerns me the most are the muscle spasms, which happen in every muscle of my body at any given time. This concerns me because obviously the heart is one huge muscle; and what happens if that goes into spasm?

Thanks for reading and if any of you have any comments, please help me....


2 years ago

Lily-

My numbers aren't like your's. But why don't you go see an immunologist? I don't know what your insurance is. I just call my regular doctor and get a referral and go to whatever specialist I need to go. And then I go. I don't even have to go to my doctor. I get the referral over the phone.

a friend's wife with MS was diagnosed by MRI or CT scans finding lesions on the spine and brain. I don't remember which type of scan they had. Initially, they told her she didn't have "ENOUGH" lesions to classify it as MS. Implying that she did have lesions. I don't know anything about MS and hypogammaglobulin anemia.


jmmcp123 2 years ago

Lily,

I agree with G, you need to see an immunologist. There are so an other tests that it all connects to that only an immunologist can tell you what you can and can't rule out. From my research low immunoglobin levels can be associated with MANY different things and my husband did a lot of blood and urine tests to rule out different possibilities.

My husband's numbers are almost non existent in all three, IgA, IgM and IgG. He has about 60 out of a range of a couple hundred in each. When his primary doctor believed there was an issue with hypogama, he refered him to an immunologist. You should ask to be refereed to one if you can't just go without a referral.

Good luck,

J


jmmcp123 2 years ago

G,

We are now trying to figure out who will do the infusions. First, one place was going to, but another called and said they can do them as the other place cannot. So I called the first place and they said that they had never told anyone that they could not do it, and as it is a big market for infusion therapy, companies try to call potential patients and take the business from the first clinic. How frustrating is that!?! It’s all a numbers game to them.

We are waiting to see another immunologist (I am crossing my fingers that we can find an appointment this month), in the mean time we wait and hope for the best. He is not really all that sick, just usually gets a cold here and there, with the exception of this last time that he got pneumonia. Other than that he is just as sick as I get which is not too bad, just normal. I guess we would like a second opinion to confirm the diagnosis before we embark on this journey. To me it’s a little strange to say ok sign me up for IVIG after only 2 blood tests.

I am glad to hear that you feel better after you started the infusions! After countless hours of research I completely agree with you there is so much unknown about this. It seems that there is much research suggesting that CVID can be triggered by something, you don’t necessarily have to be born with it. Then I believe that if something triggered it, maybe we can un-trigger it. I mean all of the processed foods and chemicals we put in our body, it’s no surprise that we are starting to see more strange health stuff.

Continued success and health with the treatments.

J.


Lilly64 2 years ago

@G: Thanks so much for the information. This ALL started because they are trying to rule out other things to come to a MS diagnoses. However, everything is coming up as MS. And like your friend, I also have two lesions, but not enough to call it MS - aarrgghh....! I even have optic neuritis which is the MAIN thing for MS! So because these blood tests were all done for that reason, up comes the hypogamma... And per my pain management doctor, numbers in the IgA and IgG would be low with MS. So where is my quarter back (neurologist) to put all of this together; it was his superior that directed him to order all of this blood work in the first place because MS patients exhibit these problems. But he is totally dropping the ball here. I will seek out an immunologist as I believe that I can just call one or get the referral over the phone as well.

@J: ALL of these "new" conditions that people have - from breast cancer (seems like almost everyone has it!) to this condition - are totally from the crap we eat. Pancreatic cancer has soard to the top also; this was unheard of years ago! (Our pancreas is there to filter out the crap, but it can't do its job with the overload of junk; hence, abnormal cell life within the pancreas.) I have been watching and researching about preservatives in particular and I do believe they are the culprits to SO many problems. I believe that autism is caused by this as well as so many kid cancers. I think it is time to take a stand against the crap that food companies are allowed to use because it is unreal how bad it has gotten over the past 40 years; it is literally causing ALL of these health issues! As part of my new year resolutions, I am going to try and shop at a whole foods store. I say "try" because it is SO expensive to get food without all of the preservatives and additives in them. And the ironic thing is that then the health people talk of taking probiotics to flush your system of all the crap. Come on now.... If you look back 40-plus years ago, people ate in-season foods, there was none of this antibiotic-driven meats on the shelf, and it was unheard of for so many people to be this sick! Really, look at these health boards on the Internet; they are overloaded with really sick people! I don't know why people are just "accepting" these diagnoses. Someone has to do something to stop this madness. When I was in grade school, if a child had autism, it was completely unheard of, as well as ADHD, cancers, etc. But it seems as though we just take it! We need to fight back against all of this crap. If I can shop and eat whole foods for the next year, I am wondering if there can be a reversal in my body that would make me purely healthy! Just sayin'...:)

Okay, I am done with my rant for today.... Thank you all for the information.... I guess I am off to an immunologist!


tina312 2 years ago

Hi All,

I have been on IVIG for almost 2 1/2 years now..................bi weekly treatments mostly..........but when I am really sick treatment go to 2xs a week. I know that this will be for the rest of my life...........I was wondering if anyone has had a port put in? My veins are still holding up but more times not then not my iv needs to be moved to a new vein to finish up my treatments. If any one has had a port put in please share your experience go or bad ..............................I look forward to hearing back


iamkaram 2 years ago

Hey , Thanks for sharing the info. My dad is suffering from CVID. He is on monthly IVIG treatment. I read ur blog. You mentioned about some second treatment "Subcutaneous Human Immune Globulin Method". I want to know about this method more. IS it safe as IVIG. and how much it cost as compared to IVIG treatment.


Amber C 2 years ago

Brian,

I just checked back on the page and saw your comment. Sorry I'm just now getting back to you. We finally made sense of all the insurance baloney and have had 1 IV treatment and 2 subcutaneous treatments. Feeling 90% better. Stomach issues of bloating and such so I am interested in any info there but overall very thankful to not feel constant fever like symptoms and infections. Praise God, restoration is happening. Life is not always easy with CVID but it does get better and I'm very thankful to have people to chat with and bounce ideas off of.


2 years ago

Iamkaram- I don't know much about subcutaneous method. I know right now it's once a week with 5-6 needles inserted into stomach(?) I think you need to consult doctor about it. It's probably cheaper because you do it yourself- no nurse and at home.


Lilly64 2 years ago

Hello All! I hope this day, and every day, brings you relief from your symptoms !

This is a long one, so please bear with me... :)

I guess that I have some "good" news to report - finally! These are the subtle ways that I always say the Lord answers prayers for me (regular doctor being out of town). So..... after my second major ear infection in seven months, I called my long-time ENT doctor for the usual visit. The ear bothers me most of the time, but flares into a major infection about twice a year - sometimes more. He was out of town and I was afraid that it was in the mastoid again, so they referred me to another ENT. I had gone to the ER the night before (last Sunday), mainly for a CT scan. But of course the resident "doctor" had his own agenda and did not want to do a CT. I made the mistake of telling him about these chronic infections and that I thought I needed a CT; you never tell the ER doc what to do because they will do the exact opposite. I don't know why they have all of this literature and commercials about how you need to "advocate" for your health care when doctors HATE that! Anyway, ER doc told me the wrong thing, prescribed all of the wrong stuff. Hence, calling my doctor the following morning.

So the fill-in ENT saw me immediately on Monday. I told him all about the chronic issues with the ears for the past several years. I also told him about some other issues (my eye problems, lack of smell, etc.). This ENT took everything I said and LISTENED! He said that I should NOT be having chronic infections like this twice a year and there has to be something systemically going on...... Wow... So I told him I had the hypogamma..... He shook his head as though we were totally on the same page. Then he said that that in itself is a leader to some other things..... So I said, um - CVID? And he again shook his head and said YES! He was a little surprised that I knew of this, but then I told him how I came to this site with the dx of hypogamma and the other things I have going on. I went on to tell him about my lingering MS diagnoses as well as test results that other doctors have just ignored leading to an MS dx (and/or CVID). The CVID can, in fact, be an underlying condition of MS (both autoimmune). I told him that I "only" had two lesions on my MRI a few years ago (along with optic neuritis), and he shook his head and asked why no doctor was following up on all of this stuff for me. I had no answer except to tell him that my neurologist had basically dropped the ball on referrals (really just never referred me beyond a hematologist). But given all of the tests that have already come back indicating MS, he still hasn't pursued anything - or the CVID even. In all fairness, I guess, the neurologist may not know about the CVID. But he does know about hypogamma...

That is not all, however, with this new doctor. I have several lumps on my head, a couple that are squishy. Clogged hair follicles. This is what my primary told me - without even feeling them, and this is what my neurologist told me - without even feeling them (um.... neurologist - head?!). This doctor said something about them possibly being lymph related, which is a little strange, because my regular ENT also has been watching my lymph nodes closely. And we do know that lymph-related issues can happen with hypogamma.... or CVID.

So this new doctor not only listened to me, he also said that the rheumatologist (immunologist) is the one who should be following me and putting all of this together for me. I told him that I have gotten here by myself thus far by researching (as far as the knowledge). He said there is a lot to figure out and put together, but also said something quite major IS going on that cannot be ignored anymore. He gave me the referral. I didn't really need one, but I am sure how you all know how it is when you doctor yourself (as we should) and go to a specialist with our own "theories"; they think we are a little nuts (well, me anyway).

So, CVID, MS - both? Mind you, I empathize with all of you and your struggles, and I sincerely hope that your treatments are helping. But now I am going to hopefully get the treatments that I need, and I am relieved in a sense that finally someone took an interest. It has been about six years (or more since the mind began going).

The one thing I wanted to ask any of you: Although I have physical problems from all of this, it is my mental capacity (or lack thereof) that I worry about more. Now that may be related to the MS, but did any of you have memory, forgetfullness, disorientation, dizziness, foggy, misorganization, and major major fatigue issues with the CVID? And if so, does your treatment help with that?

When I finally get treatment for whatever, I am just truly "excited" that it may help much of this mental incapacity.

Sorry this is SO long, but I wanted to share with all how I have finally broke a barrier, hopefully toward my feeling better......

Peace.... Lilly


2 years ago

Good Luck, Lily!

Tina- I know nothing of getting the IVG so frequently. If I get sick- my doctor gives me antibiotics- not extra treatments. A port does sound ok if you get it that frequently.


aimee 2 years ago

Hi all,

It is very helpful hearing so many different accounts of life with CVID. I wanted to weigh in on a couple of things our experience has taught us. My son, now 14, has CVID and JRA. The CVID was discovered after the JRA but the JRA was a result of having CVID. Someone asked on this blog, what difference will it make to take a little more time before starting treatments. It makes ALL the difference. The sooner you can get started on treatment, the fewer complications you will have later on. It may not be a matter of life and death right now, but complications can be very serious. Also, I cannot help but notice that very few people have been talking about premedicating prior to their infusions. I would strongly encourage you to talk to your doctor about this option. Premeds have made a huge difference for our son. Since adding premeds and IV fluids prior to his infusion, his side effects are significantly lower. He is back up and active that night and nearly 100% the next day. Hope this helps.


2 years ago

Aimee,

I am happy your son is responding to his treatments so well. My husband is still in testing. CVID is confirmed by second opinion at some of the top researchers in the field. They are just now trying to finalize everything, rule out any other possibilities and start him on the treatment. What they said is that someone must be watching out for him since he is not more sick than a regular person and has had no major issues up until this point. He is in his late 20's. It is their belief that we need to start treatment now either way.

I guess it is so hard to accept or understand since we are not seeing anything bad and any colds etc that he has gotten we have handles greatly with medicine and a good diet. Such a hard decision to make. They just did a TB test, candida test, tetanus test on his arm. The nurse that read the results said why are you here, your body is responding well to everything, and creating a response even if he has barely an antibodies. Everyone else we see, has no response to any of these.

I have a question. Has anyone with CVID or know anyone with CVID that has had gastro issues, as far as diarrhea and other related issues?

Thank you,

I hope you are all doing well!


Lilly64 2 years ago

@J: I have been reading SO much on this, especially since I am finally going to the immunologist tomorrow morning; I cannot wait! Guess what? My neurologist fired me! My last MRI of my brain a couple of weeks ago, the radiologist commented on the area of the two old MS lesions on the scan. I wanted to see what he was talking about so I went to the disc myself. Lo and behold, there is NO Series and/or Image number that he references! So I brought this to the attention of my neurologist and apparently he wasn't pleased that I doubted "one of his own" with my comments. He never answered me, never asked to see the scan on the disc, and just sent me a certified letter firing me because I was "not in compliance" with his protocol! I only bring this up because I do believe that my hypogamma... is relating to some underlying MS issues that this neurologist has been ignoring - um, after diagnosing me with MS AND even staging it as PPMS three years ago, but pulling back on his dx when another doctor questioned him.

However, I do believe that many, many of my problems stem from hypogamma first. In addition, through my research, almost every web site states that gastro issues are a major problem of CVID, and I quote from one of them:

Most patients with hypogammaglobulinemia present with a history of recurrent infections. A detailed clinical history should emphasize the following:

Family history

Age of onset

Site of infections

Type of microorganisms

Blood product reactions

Recurrent infections

Gastrointestinal symptoms

Musculoskeletal symptoms

Autoimmune and collagen vascular diseases

This is only one that mentions it, but all other sites I have encountered also list it as a major symptom.

@Aimee: As I just told J, like your son with JRA following the CVID, I also believe that I have MS via CVID (hypogamma...) since I have SO many concrete issues that directly related to MS: optic neuritis, loss of smell, two lesions in my brain, trigeminal neuralgia, and all of the weakness, numbing, etc.

Bless you with your son and I hope for continued treatment success. Those are some great ideas that you mention.

I am off to the immunologist tomorrow; he only treats those with CVID; I cannot wait to get some answers, and hopefully treatment. My brain is mush!


Lilly64 2 years ago

I am SO sorry the above is so off-beat; it is my mush brain..... I had edited it way down before letting it post, but the site posted my long version. I am very, very sorry, especially to you, J. I just wanted to answer your question. And Aimee, I just wanted to thank you for your great suggestions and wish you well.

So sorry!


Lilly64 2 years ago

@Aimee:

By the way, Karen H. posted this comment two years ago here on this hub:

"Pretreating with benadryl and Tylenol is helpful. Hydration is essential, as is positive thinking."

But that is the only one I remember seeing as far as along the lines of your comments... :)


2 years ago

So we are almost finally done with testing. Dealing with this mentally as best we could. I guess the biggest fear is the unknown of complications and side effects.

I have a question: His doctor is having us decide soon what method we want to use, subq or intravenous. After looking at studies and research I think subq would be best because it won't stress the vein as much, less change of clots, etc. And from what I understand a more stable amount of globulins in his system. Also I read that it has less change of minor and major side effects because the body is not getting overloaded with antibodies once a month.

Do any of you have any opinions on the two different methods?

He is at a great hospital, one of the country's best medical schools that does research on PIDD and CVID. The doctors are amazing, and I hope soon we will all have a better way of treating and even beating this thing.

Have an amazing weekend everyone!!!


Lilly64 2 years ago

I have a question: The immunologist has ordered the vaccine tests now for me. However, I have had another one of my wicked ear infections - this time in both ears. I had a round of Levaquine about a month ago, but the infection remains. Does the hypogamma and/or CVID make you resistant to antibiotics? May be a stupid question but I am still just learning about all of this. Thanks!

And, again, so sorry for rambling on before. Shan't happen again!

Lilly


2 years ago

Lilly,

I have not heard of that. What they told us for my husband is that once you are on ivig, they can treat you like a regular non CVID patient as far as fighting infections with antibiotics, as the ivig will work together with the antibiotics.

J.


Lilly64 2 years ago

J

Thanks so much for your reply.... But I am not on ivig treatment (yet?) so I am still in the "fighting" stages. Hence, my question about antibiotics not working because of the CVID possibly blocking them, or being resistant...

Lilly


2 years ago

CVID doesn't block medicines. Sometimes, it just takes a long time and a lot of antibiotics to clear up an infection. I had a really bad sinus infection and ear infections- so bad, the ENT was calling people in the office to look at my xrays and how full my sinuses were. He even had me talk to the drug company. I was on leviquin for like 20+ days and then another drug for a couple of more weeks before it cleared up. It was that infection that caused the ENT to send me to an immunologist.


Lilly64 2 years ago

@G: Thanks for the information.... When I had my second very bad ear infection, 11 years ago, it turned into mastoiditis. I was on several oral antibiotics for about two months prior to them finding out it was in the mastoid bone (very dangerous). I was then in the hospital for three days on IV antibiotics. Then after my release, another month of oral antibiotics. However, no one ever said anything to me back then, and not even over the past 11 years where I have had about two or three of these infections per year (not the mastoid, though). It wasn't until my last one that began mid-February that someone said, "Aha..." I really liked my original ENT guy, but when I got the infection he was out of town... So they referred me to another ENT - a very aggressive one who couldn't believe that I had been suffering these for so long and no one had other suspicions of what was going on... So the new ENT referred me to the Immunologist who has now ordered the vaccine workup. And, FYI: The one week round of Levaquine did not work this time and I still have the infection, albeit not AS bad....

So it is because of the lack of our own antibodies that my ear infections are so hard to control; hence, the CVID in an indirect way being resistant to medications.

Thanks...


Brandon 2 years ago

I have been living with CVID since 2008. I was diagnosed when I got really sick with pneumonia. Ever since then it was adapting to the changes. It got to be part of my life after less than a year. I finished highschool and now i am pursuing to go to be a doctor and learn as much about the immune system as possible. Everything I learn about anything, it makes more sense.


Sharon g 2 years ago

Well hey guys haven't been on here for a while, still havin my infusions three weekly, I was told my troth levels were below three, when I started infusions in 2007, now eight point five. But because I get so ill, I can't come off the infusions, in the meantime, caring for my husband with cancer, age 57 died in February, very sudden, so sad he thought cancer for eleven years, so very brave, bless him thought right till the end. Wanted to have more kemo treatment, to see our little lad grow up. God love him, bobby new me for 36 years, I loved him so much. It's been hard eh. Just took a break with my little lad. After the funeral it's been hard. 200 people at he's funeral. Such a loverly kind man. But I have to try and stay strong. It's not easy. But I'm okay had to delay my infusion. But have it next week. What a difficult time it's been. But I feel okay in myself. Glad this websites here we can talk to each other thanks Sharon


Sharon g 2 years ago

Well hey guys haven't been on here for a while, still havin my infusions three weekly, I was told my troth levels were below three, when I started infusions in 2007, now eight point five. But because I get so ill, I can't come off the infusions, in the meantime, caring for my husband with cancer, age 57 died in February, very sudden, so sad he thought cancer for eleven years, so very brave, bless him thought right till the end. Wanted to have more kemo treatment, to see our little lad grow up. God love him, bobby new me for 36 years, I loved him so much. It's been hard eh. Just took a break with my little lad. After the funeral it's been hard. 200 people at he's funeral. Such a loverly kind man. But I have to try and stay strong. It's not easy. But I'm okay had to delay my infusion. But have it next week. What a difficult time it's been. But I feel okay in myself. Glad this websites here we can talk to each other thanks Sharon


Sharon g 2 years ago

The funeral parlour lost my husbands body, found it in the end, we got to see my husband twice, in the parlour. Then he was brought into our home on the day of the funeral. The parlour lost his clothes then found them. Total disgrace,8half thousand pounds plus flowers arrh, then said the cemetery I wanted him buried in was flooded, arranged a plot and another grave yard, two days before I had to change it to the graveyard I wished him to go into. Because the girl made a mistake it wasn't flooded, I had to choose another plot. Call all 200 people two days before changing the graveyard where my husband was bein buried in. Oh my so much pressure then arranging the funeral. For the man of my life I dearly love and miss. And coping with my illness cvid. How much more pressure can anyone take, at this saddest time. They sent me a cheque for all the inconveienvence no one can take my heart ache away, but my little lad and myself will be strong toghether, for I promissed my husband, we will be strong for him, he was the bravest man ever, fighting cancer god love bobby thanku sharon


Lilly64 2 years ago

Oh Sharon.... I am SO sorry for your loss... May God and Peace be with you..... Do you have family to lean on? Please let me know if you need to chat more about your loss..... Be strong; you need to be strong for your little one, but they are what ultimately get us through difficult times. God Bless.....


Sharon g 2 years ago

Yes I have five sisters and loverly freinds, they have all been fantastic,, it was a amazing funeral such love for bobby. So so sad everyday is hard. But I try and keep smiling for my little lad. Thanku for being there Sharon


Sharon g 2 years ago

Yes I have five sisters and loverly freinds, they have all been fantastic,, it was a amazing funeral such love for bobby. So so sad everyday is hard. But I try and keep smiling for my little lad. Thanku for being there Sharon


2 years ago

Sharon

so sorry for your loss. Glad you have loves ones in this time of need.

J


2 years ago

I wanted to ask you all about traveling with your sub q infusion equipment. My husband and I will be traveling to Europe in the summer. Have any of you experienced difficulties while boarding the plane. We will be there for 3 weeks so I assume we will have three doses with us and I want them in my carryon. I worry about when I switch flights in other countries and how they will handle it, and also in the US.

Any insight will greatly help.

Thank you

J.


2 years ago

Sharon-- I am so very sorry for your loss!! And such incredible difficulty in a time already so stressful and sad. I am glad you have a good support system! Your family will be in my prayers.


Sharon g 2 years ago

J

Just take a covering letter with you, and get insurance to cover cvid, just carry it all in hand luggage you will be fine. Sharon


sharong 2 years ago

I had a lawful time with my transfusions last week, five needles later he found my veins, oh i was so fed up and very tearful, i had enough pain for the day. seven hours later.

well i went to lanzarotte with my little boy, i never did this before on my own i was very nervous. we had a great time, missed my husband so much. every day struggling hard to cope. fighting the tears. my little boy struggling, i see him cry its so hard, daddy is so missed. but always in our hearts forever.

life is so different now. sharon


Rhonda 2 years ago

I am glad to have found this site and discover that other people to talk to. I have been on IVIG for about 3 years. Since Jan, I have been unemployed. I am thankful that , as a Medical Assistant, I had the foresight to register with the pharmaceutical company for assistance. For every 3 months of infusion, I qualified for 1 certificate for medication , in the event of loss of insurance. I do suffer from Bronchitis and sinusitis frequently. And I do have GI issues.

Late last year, the doctors and clinical staff were invited to a program to show us a new way to test for H pylori.We were each given a "balloon" to inflate, then we had to drink a solution, wait 15 minutes and then inflate a 2nd balloon.

During the program, the air from the "balloons"were tested. My test came back positive. I wasn't even aware that I had H pylori.

There is so much to comprehend with hypogamma. Even after 3 years, I'm still confused. I do subscribe to the IDF newletters and to their FB page.

I see that a lot of people are doing sub q, I have never tried it. I have been on Privigen, Which only comes as an IV.

I know that I'm rambling. I'm sorry. It is nice to find others that understand.

Sharon,

I am sorry for your loss. My mother became a widow while she was in her 30's with 3 children. You are a brave, strong woman and it sounds like you have a wonderful support system! That support will help you and you son to grow stronger. May your pain lessen and blessings follow you.


Lilly64 2 years ago

Hey there to All, and welcome Rhonda! So the immunologist gave me my orders a couple of months ago to get the vaccine (I think that is what the order says; not sure), but I haven't gone yet. There has been SO much other stuff going on with husband, kids, money, etc..... Why is it always the woman who puts on hold her health issues?! The ear infection is starting up again with the itching being the first sign.... AAHHH! And my fatigue is back again quite bad. I have a question: The immunologist said that hypogamma... and/or CVID would NOT cause such fatigue. But he did say that possibly the infections I get cause the fatigue. I am talking fatigue as in falling asleep at the wheel of the car when I drive. Any thoughts and do any of you experience this horrible fatigue? Thanks!


2 years ago

Thank you all for the words of encouragement, I am glad I found this site to ask questions before my husband began the treatment, as I had many.

He was diagnosed with CVID in November of last year and we began SCIG treatment 3 weeks ago. We decided to go the subQ route because from my research it is less invasive and your body gets lower doses than the monthly IVIG. He is taking Hizentra and is responding very well. No side effects so far. This last time we tried it without pre-treating with benedryl all was well. I just make sure he is really hydrated the day before and the day of. He says he also feels better, no daily mucus, and cough.

If anyone has any questions about subQ, I would be more than happy to share whatever information I have.

Also, has anyone checked the Hizentra site, they say that they are the only ones approved for every 2 week subQ. Does anyone have experience with doing it every 2 weeks?

All my best!

J


Sharon g 2 years ago

Thanku Rhonda

My little boy is struggling, it's not at all easy, thanku Lilly 64 . Yeah loosing your daddy is hard eh, he's going through a difficult patch, poor child, I miss Robert so so much. Went to the grave tonite, my little lad said mummy I wish they could bring that death box up, and leave it, give you a key so we could say goodnight every nite. Expesically when they put daddy's head stone on there. Oh my heart sank. There's no way to explain, my sister said daddy's tired hunny, he has to rest and sleep now, he was in so much pain bless him. You wouldn't want daddy to be here in pain, we must let daddy sleep now. Oh this is hard eh. All I know in my heart, he's at peace now. I love and miss him dearly. My little lad is getting some beverament help. Let's hope it gets easier. Oh Rhonda it must have been hard for your mum bless her. And how we manage everyday, I try to keep smiling say a prayer for our Robert god love him.


Lilly64 2 years ago

Sharon..... God Bless You and your son.... It must be awful, and I couldn't imagine. May peace be yours very soon. Actually, my brother passed away VERY suddenly about two months ago, leaving behind a wife and four beautiful daughters. They too are receiving bereavement counseling; it was such a shock. Although it was my brother and yours, your husband, I can definitely understand your pain from the death of someone so close. I am reading the book (the movie is out now too) "Heaven is for Real" on my Kindle right now. It definitely puts some things into a blessed light for those that we have lost. I would recommend you reading it, Sharon, possibly to or with your son, since it is from the experience of a four year old boy. Maybe too early to read something like that, but keep it in mind, as it is helping me somewhat with my loss. Peace to you and be well... :) Lilly


Sharon g 2 years ago

Lilly I'm so sad for you too Hun, I miss him so so much,


Sharon g 2 years ago

I had my transfusion oh my pain all over. Spent most my day in bed. Feel so ill. My poor little lad has now been diagnosed with a autoimmune problem idopathic angioedema. Oh my do you know I'm exhausted after my infusion. So tired. Fed up with pain. I know have laryngitis in augmenting antibiotics. My asthma causing me problems. Still got up won't let it beat me keep smiling. Goin to be hot tomorow Sharon


barbie52 2 years ago

Thank you everyone for your informative posts

I have Bronchiecstasis and CVID, both mild

I am having a Bronchoscopy and lung wash this week

My Immunologist said that my IGA etc numbers don't line up yet for infusions

I have just had nine courses of antibiotics in seven weeks with lowered FEVs and oxygen sat at 95

I have also had three treatments of prednisone in the same time

I feel strange because part of me wants the infusions because of the infections and fatigue yet I feel like I am being a drama queen with no call to be wanting this treatment

I am 62

I have had history of pneumonia(s), pleurisy, shingles five times, exposure to Legionnaires

Bronchitis

Diarrhoea all the time

Bloating

Shocking sinus

Fatigue

I am scare that I may be a hypochondriac wanting infusions and at the same time know antibiotics only help so far even though I am on a daily dose of Doxycycline, sera tide,Tilade, Ventolin

I live in Sydney

Can anyone understand my dilemma

I hate causing a fuss

Thanks


Lilly64 2 years ago

@Sharon - How are you feeling lately? When I come on here to read updates, you seem to never have a break... Please be well(er)...

@Barbie52 - Welcome, I guess (meaning that we all would like to meet and/or chat under healthy circumstances).

Any hoot, in my case, my Ig levels are not that excitable and I have never done infusions. In fact, I went to the immunologist once and he ordered the vaccine test, etc., but I never had it done or followed up. My husband is sick and so I had to take care of him. But maybe I will follow up soon. Both my IgA and IgG levels are decreased but more the IgG (infection one?). However, I still struggle with ear infections, skin problems and fatigue. But the fatigue has not been that bad lately (I live with fatigue daily, but some days worse); it is when that gets bad that I go back to the doctor. I truly think that my body goes through cycles with this and right now I am on an "okay" cycle. When things begin inflaming (ear, skin, etc), the fatigue gets worse and I gain a bunch of weight too (bloating/water weight that can hang around for several months). During one episode, I went up THREE dress sizes! So I take the antibiotic for a while and load my skin with steroid ointment, but it is the fatigue that just wears on me. However, my doctor said that CVID in itself would not cause fatigue but probably from the infections. Personally, I am not so sure about that. I definitely have the hypogamma.... but CVID has yet to be dx'd through the tests.

Now about you: I am very very concerned at the amount of antibiotics you are taking and have taken for SO long. My understanding is that part of the reason the infusions are done is to replace what is missing (antibodies) to fight infection and reduce the amount of antibiotics taken. Please anyone correct me if I am wrong on this. And because you are on SO many antibiotics, your doctor should definitely be looking into infusions. These are only my opinions, but stated from facts: Your stomach problems could be exacerbated by the antibiotics because they kill the good bacteria in the gastro track, causing you to become more sick. So taking them is NOT a good thing unless you absolutely have to, and if you take them continually, ultimately your body will not respond to them anymore anyway. And you do not want your body to become immune to antibiotics. My mother in law went through a terrible time with this years ago. I won't go into details because I don't want to cause any unnecessary alarm, but she was very sick from taking too many antibiotics.

So maybe change doctors? Your doctor should know the terrible effects of being on antibiotics for so long and it sounds like you should be referred for infusions.

Again, that is my understanding and I know first hand how "poisonous" antibiotics can be to the system.

Lastly, I know what you mean about feeling like a hypochondriac. It is because there is so much that goes into hypogamma and CVID; so many symptoms all relating to one illness. My family is clueless about what I endure and they think I am on disability because I like it! Just do for yourself, but know that you are not making this up in your mind.

Bottom line is that I think you should have another opinion about getting infusions. Best of luck to you!

Lilly


2 years ago

I hope things look up for you both, Lily and Sharon!

Hi and Welcome Barbie!

I am not sure why your Doctor is looking at IgA for infusions. I know they look at it, if it's low, to determine if your body is destroying it or if you just don't make it. Because if your body destroys it- you need a very pure IgG infusion to prevent a reaction.

How are your IgG #s? I think if your IgG is really low- get a second opinion like Lily suggested. It can't hurt.


Jordan 2 years ago

Hi, I'm from Australia, I'm 19 years of age and was diagnosed with CVID at the age of 6, I received IV infusions of Intragram for 10 years and at the age of 16 I moved to Subcut infusions 3 times a week. Since I started subcut infusions I have had a huge decrease in sickness. I currently am in my 2nd year of a Bachelor of Paramedic Science and have spent over 350 hours on the Ambulance without getting sick at all! I still do get lethargic sometimes and tired but its such a blessing to just live a reasonably normal life. The road has been tough and many sicknesses and operations have been had. I have battled with anxiety because of my condition for many years as I'm 19 with a girlfriend you do think about the future and what will happen to you. All I can say is that I look to my lord God for his provision. That he has built me up to what I am today to use me, not to just pull me down. I would encourage anyone to truly seek the Lord as I have found him. We all have a unique ability to live such a humbled life by being reminded of our weakness every time we infuse ourselves. Not many people get the opportunity to be humbled like that and it is a blessing and a freedom to know its not in our hands. To anyone reading this that feels like theres no hope, that is thinking why me (and we all have), that is anxious,depressed,worried, never give up. That's my motto. Trust and seek our Lord Jesus Christ and never, ever, give up. Email me (captaingrice@gmail.com) if you have any questions about how I continue to live through my condition with such Joy. Bless ya and stay strong!


Lilly64 2 years ago

Hi Jordan, and thank you for your inspiring and positive story! Unfortunately, you grew up with this being the "norm" for your life, and I am sorry for that. However, you have proven to be a real trooper and that is wonderful. I think many of us here were hit with this as adults and it is harder for adults to accept these life changes; children adapt so much better to life's changes, etc.

I know for me, after years and years of chronic, horrible ear infections and skin infections, it was just brought to my attention that this is what I have about two years ago, at age 47. Many people on this site have it way worse than me, and I haven't even gone the entire route with the testing, and have not had any infusions either. I am gearing up for another ear infection and my fatigue is hitting me again quite badly; these are the times that I will pursue more testing, etc.

One thing I wanted to ask you: You mention fatigue from CVID. However, when I asked my immunologist about this, he said that fatigue would not be a part of it, and that it is probably from the infections. What exactly does your fatigue stem from with regard to CVID? Is it your infections, your infusions, both, or something else? I get such chronic fatigue episodes that I doze off while driving (and computer work), even if it is daylight or I have just gotten up after a night's rest.

Any insight would be very much appreciated and I certainly hope that you continue with that positive attitude. That is much help to everyone on here to see someone who concentrates on the ups rather than the downs, especially me... :)

Peace and be well!

Lilly


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Sharon Goodwins 24 months ago

Hello Lilly I haven't been here for a while, I think you are right about the antibiotics, I now have omperazole to layer the tummy,

Life's been very trying lots happening here, my son struggling school has been hard work, keep bombarding Leo with detentions, and homework, I think they forgot daddy only died nine months ago, it's coming up to Christmas missing daddy so much, me too eh, love the ground Bobby walked on, lives in our hearts forever, as for me well no end of infections, verucas spreading, arrh. Keep smiling honey, chin up merry Christmas


Sharongoodwins 24 months ago

Lilly I passed my driving test Bobby will be so proud of me, keep going keep smiling keep well, thinking of you


Sharongoodwins 24 months ago

Lilly im writing a book it will be published in January feb bobbys story my husband. thought for eleven years. Fighting cancer.

You will be able to buy it on line all proceeds go to royal marsden, it's being done as we speak.


Lilly64 24 months ago

Hey Sharon! Good to hear from you, but not good to hear that your son is struggling.... This too shall pass; just keep working with him (and the school) so he knows and feels the stability of you; that you are not going anywhere. I could not even imagine losing my beloved and my heart aches for you!

Congrats on your driving test! That will help you SO much. I couldn't imagine not being able to get in the car and go when I needed to... :) And I am sure your man is looking down, smiling... :)

I have been having horrific nightmares these days, since my brother took his life in March. They set in about six months ago. He was actually in my "dream" last night... I think I need to go and talk to someone about all of this because it is eating away at me... I have four sisters and three other brothers and none of them want to talk about it. In fact, I am just trying to get them to include his widow in on family emails, and they refuse.... Isn't that strange?! My brother had four beautiful daughters, ages from 24 down to 12 and I would like to stay in touch with them, or even be a part of their lives. But I do not get much response back... I am sure they are still mourning, obviously, but they do not reach out to me at all.... Oh well....

With regard to the antibiotic, my husband is now on one for sinus and his stomach is bothering him as well, so I am going to get him on the probiotic today. Antibiotics are really nothing to mess around with....

I hope you are feeling okay and I bet you are very excited about your book! You must let me know when it comes out and the title. I would love to read it!

My health isn't great but I am getting along. I am now having some lymph node issues and my doctor was astonished at the size of my node in my neck last week so he ordered an MRI, which I had. And it showed a lot of lymph activity on the left side of my neck/chest, but not enough for a biopsy - yet. I really need to get the CVID testing done to see where I am at with that, and how low my IgG and IgA have gone down.

Be well, try and have a happy holiday season - especially for Leo (love that name, by the way), and God Bless!

Lilly


23 months ago

Hello,

my husband has been on subQ for almost a year now for his CVID and thank goodness, one year of no sickness, and he is responding well.

However, he is getting a little more nervous when I stick the needles in and says it hurts. I think its mostly anxiety and annoyance that we have to do it every week.

Is there anything you guys have tried to use to numb the area, or make it less painful when the needles go in?

Thank you!


Forrest Mason 23 months ago

He should be putting Lidocaine on the spots where his needles will go in for 20-30 minutes before putting in the needles. Wipe it off with a paper towel and then sanitize it with an alchohol wipe before pushing in the needle. Your immunologist will need to prescribe the stronger Lidocaine.

Also, 2 Tylenol or Advil about 30 minutes before the needles will numb it also. FM


23 months ago

Thank you!

He has been fortunate to not have to take the Tylenol and Benedryl at all before. We try to stay away from medication when not necessary. But the lidocaine is a good idea I will look into that. Maybe I can find something at the drug store before I can get a prescription.

Also, his insurance is being canceled so I signed up for a new one for Jan, however I don't know if the authorization process will be in time for him not to miss some doses.

Has anyone had experience with missing a few weeks, or getting the manufacturer to help? he is on Hizentra

Thank you!

Happy Holidays to All!


23 months ago

Hi J,

I do IVIG infusions monthly vs subcu. But this summer, my insurance decided that since I was doing better with treatment- I didn't need it anymore..ie i was cured...so they denied me treatment and I was denied my infusion for that month and for 3 weeks after. I did get a sinus infection, but it was ok. I figure I went for years w/o any treatment- I would be ok. It was ok. I hope it all goes through quickly for your husband and he doesn't have to miss any treatments.


Sharon Goodwins 22 months ago

Hi Lilly 64

My heart goes out to you, it's so hard when anyone takes there life, the loved ones they leave behind.

My brotherinlaw hung himself my sister got very ill after this developed biopolar bless her, she don't go out much, but I love my sister she is my best Freind.

Leos still struggling, had a couple of bullies at school, the teachers rules let them fight you cannot take them apart as the teachers can get done, this is discusting no rules in school eh. Macmillan has helped heaps.

I have driven on the motorway I passed my pass plus course, it's really helped me driving. Get leo out aswell, to see the family.

I am very tired after my infusion slept 18 hours oh my I must have needed it, verucas still spreading difficulty to walk, got a stick it helps.

Yes the book is published bobbys story author sharongoodwins.

Www.fast-print.net/bookshop/1716/Bobby-039-s-story Theres a lot of bobbys story's for sale. This book has my son and husband on the front, I'm the author on the front cover, you can order it on line.or telephone 01733404828. its going into a london magazine for sale to magazine on the move.soon I'm so excited all proceeds from the book, the company donate proceeds to royal Marsden hosp sutton Surrey.

The doctor changed the antibiotics again to amoxicillin now, fingers crossed these work.

I have mega steroids. Get sick of being unwell.love sharon


Sharon goodwins 22 months ago

Hi lilly I'm sorry to hear about the lymph node. Not good news Hun, life's a nightmare sometimes having to face our illness eh, try your husband on a meta tonic three times a day, it really does help or beruca vitamin orange one a day really helps you.

Get them in a chemist. Or if you can get Manuka honey strongest one 26 it really helps one spoon a day.

Good luck honey you keep strong.

Sorry I haven't been on for a while, been struggling with loosing our Bobby.

Lots of love Sharon


Sharongoodwins 22 months ago

Hi Lilly

I did write you a comment it didn't come on here.

Grieving is so hard people don't no what to do or say I have five sisters and since our Bobby was laid to rest I only hear and see three of them, I understand one day they will have to come to terms with it.

Your brothers wife/daughters have no idea how you're feeling, probably think its there world that's been shattered, no it's yours too hunny, they will come to terms one day.

My two sisters and nephews nieces you would think would come or call to speak to leo he's 12 he needs there support.

But they live in there world, they have no idea how our hearts are broken, however we will be supporting each other.

Bobby would want us all to carry on be strong.

One day they will contact you.

Be strong love Sharon x


Crimsonwolf007 21 months ago

Hello, I found this article very interesting . My whole life I have always gotten sick to the extreme from sinus infections, bronchitis and pneumonia among other crazy infections such as a bizarre extreme case of Athletes foot. I have been on antibiotics of and on what feel like forever. I have allergies to three kinds of antibiotics: sulfur, Augmentin and Cefdinir so that limits my choices when taking antibiotics. Most of them I have taken repeated times. I don't know if they work anymore. I have regular allergies as well such as Severe allergies to Grass. I used to have a Iron, b12 and vitamin D deficiency which I have to watch. Borderline Low Thyroid and Low testosterone. Plus I get random fevers all the time and chills all the time. Plus I have had constant kidney stones, gallbladder stones and had it removedI got fed up with always having infections all the time, so I went to a specialist doctor. He tested me for everything under the sun from Lupis , Celiac and sarcoidosis among others. He also tested me for something which would make you more prone to infection and I would per say have to be careful and not go through mulch. He said So far everything came back normal but all of my antibodies/ antigens were extremely low. For the mean time he said to keep track of all my symptoms and any new ones. More the bizarre the better. Then 6 months later in May i have to get all the blood tests again. If my antibodies are low again he has to start looking at more of antibody deficiency and autoimmune disease. Also I work at the airport for the Gov. And if someone is sick guaranteed I'll get sick. Any thoughts ? I think it's interesting that everyone appears to get sinus infections and pneumonia with this disease, like I do. It would be nice to stop getting sick and taking antibiotics.


Sharon Goodwins 21 months ago

Ask to see a immune defiency specialist say this is affecting your life Ill most of the time. Ask for a immunology specialist to test you. Good lick


Lilly64 21 months ago

@crimsonwolf007: First of all, I will tell you that if you have low testosterone, that will lead to a myriad of symptoms such as fatigue, mental disturbances, and even possibly some of your illnesses (but not all). My husband was SO sick for quite some time - passing out, delusional, extreme fatigue, and he just wasn't all there at all! After several tests for everything else, the most important one was that his testosterone was very deficient. Since he has been on supplements, he is completely fine in all those aspects. I would even go so far as to say that during the time he was deficient, it brought on all of his back problems for which he now is very disabled. He did not have his hormones working for him, thus not supporting his vertebrae, discs, etc in his back. Even though they were already fragile, this deficiency put him over the top and into severe back problems. I don't think that doctors put enough stress on what hormone deficiencies can do; they wreak havoc in our entire body! So first get that checked out and treated immediately! My husband was like a walking zombie for several months before we found this out.

Secondly, if your antibodies (IgG, IgA, and possibly IgM) are very low, they really won't go up on their own, especially given your life-long infections. I would go with the first test result and move forward now with a good immunologist; they are allergists too but get one that really specializes in immunology too.

Lastly, and this is very important information for everyone: Get copies of ALL of your test results to keep for yourself. Do not depend on any doctor office to send them anywhere. You should always have copies of every test result in your possession. Put them in a "medical" folder and carry them with you to every doctor visit. This should include any discs from imaging testing, along with the written test results from that imaging.

I hope that I have helped you with this information. I have been through the wringer, as has my husband, and all I have to offer anyone anymore are my experiences and knowledge on so many levels.

Please post back, if you like, with any questions, concerns, results, or just to vent... Be well and peace to you... :)

Lilly


Lilly64 21 months ago

@Sharon: Hey there, girlie... How are you doing? How is Leo? I hope your struggles are easing, but I am sure it is still rough-going.... :(. I went to the book site you posted for Bobby's book and would love to order it. However, I was wondering if I can get it on my Kindle through Amazon. If not, I will order it through the form on your site.

Peace and Health to you and yours.... :)


Crimsonwolf007 21 months ago

@Sharon. Thank you.

@Lilly64 Thank you for the information. Actually I'm being treated for low testosterone for some years now, started with Jell and injections and then finally pellets implanted in my hip. Only recently I had to take a break since my wife and I are trying to have kids, but the production was not working. The doctor wanted me to stop testosterone for awhile to see if production would start up again. However it didn't. I even got the genetic

Test that they do when your trying to have kids. Found that I'm carrier for

this hearing related disease (connexin 26) and something called familial Mediterranean fever. They even tested me for the familial Mediterranean fever since I have one gene and my background would make me a prime candidate. Normally you have it only with two genes, rarely sometimes with one. But the Dr.House like doctor that I'm seeing doesn't think I have it. In the mean time the doctor said to collect my symptoms until next appointment. Plus I'm on Thyroid pills. Also just had ankle surgery recently in November and my Ankle doctor had me taking vitamin complex, Vitamin D, B Complex and this tumeric complex which helps with inflammation and immune. I took it the whole time after the surgery and he wants me to take it for at least the rest of the year. Even with the vitamins I still got a sinus infection, white tongue(which I get all the time) and the start of an athletes foot infection. Lol I even was allergic to the inside of the cast on the top part of my foot for the time that I had it on. Also I keep all of my medical records, it was just easier from all the doctors that I have seen. I hate filling out forms. I have an allergist/ immunology Saturday so we will see. It would be nice to not have another infection, for one to feel human again. Second maybe not have to take antibiotics all the time especially since I'm allergic to a lot of antibiotics.


Crimsonwolf007 20 months ago

So went to Allergist/immunologist today. Found out that from another doctors tests that my Gamma Globulin Fraction was low at 0.6.

My immunoglobulin G was low at 640.

My immunoglobulin m was low at 36.

My Kappa light chain was low at 135

My lambda light chain 76.

My Co2 was low at 20

Vitamin d was 24.9.

She was concerned and ordered skin test to make sure I didn't aquire any new allergies or any got worse. She ordered a subcutaneous allergy skin test when i come back. Also she did another blood test for my immunoglobulins and immunity system but more details. Plus she did a blood test for all my previous vaccination to check there process in my blood or something like that. I found out more in 14 days. Any one have any thoughts ?


Lilly64 20 months ago

@Crimsonwolf007: You are definitely on the right track by seeing the immunologist. You have a lot going on, it seems. My IgG is lower than yours at 549 (kind of like my credit score....lol!). Also, I have a low IgA but not sure how low. You appear to have many low results, especially the IgM (immunoglobulin m), which could be from many things, I think. Because you have decreases in those immunoglobulins, that results in the light chains being "off", again, I think.

My Vitamin D was dangerously low a couple of years ago and so I take supplements, which raised the level and also made me feel SO much better. Maybe you could start on Vitamin D3 for yourself as it will make you feel better after just a couple of weeks. I started out on 7,000 IU's per day to get it back up but take 5,000 IU's daily now to maintain. For some reason, if I don't take it, it sinks back down; probably part of whatever is going on that my body is not keeping it absorbed, and possibly same with you.

I really do not know what your Co2 decrease indicates so I cannot answer on that.

I also do not know why you have to wait another two weeks. It seems these doctors do not understand that when you are living with such illness that every day gets longer and longer to wait for an answer. Blood work results come back overnight, most of the time. But again, I cannot answer on why your doctor is waiting another two weeks to figure this out for you.

Again, I know that taking a Vitamin D3 supplement will make you feel better; it is an extremely important nutrient to have at normal levels. If it is low, it causes fatigue, irritability, etc....

Post back if you like; I will always comment... :)

Peace to you and try to stay well...


Sharon Goodwins 20 months ago

Oh bless you lolly so much going on wish you well hun


Sharongoodwins 20 months ago

Ho lolly not sure if you can get the book on kindle hun.

Leo getting better I brought him a patagan dog shes small Mongrol with terrier we love her 2 yr 7months old from battersea helped leo heaps.

Little lexi is from battersea dogs home rescue doggie.

Best thing ever. We're ok bit tired infusion next week. Had lots of swellings from the infusions it could be the idiopathic angiodema I have its settling now hun. You take care x


Lilly64 20 months ago

@Sharon Goodwins:

A dog! Why didn't I think of that for you and especially Leo. I have two dogs. My first, and only "son" is a beautiful German Shepherd, Baron. I was always a cat person until I had a total hysterectomy seven years ago, and felt bad that I never gave my husband a son. So I asked my girls - we should get Dad a dog! The girls were SO excited, as was my husband. For me, if I was going to get a dog, I wanted a BIG dog...haha... Baron has been the light of my animal life ever since we got him as a tiny puppy. They DO bring more joy to you than you will ever know; I had no idea how much more than cats. Cats just sit there and are moody... haha...

I truly hope that your Lexi brings you tons of joy; I am sure she will since I know they do from my personal experience. That was a great idea for you both.

No worries about the book. I could not get it on Kindle but I did order it from Amazon paperback since it was in American US Dollars; made it easier to ship that way. I am awaiting its arrival and look forward to reading Bobby's Story (and your story).

Try and be well, Sharon. Is there anything they can do for you to ease your tiredness? Have you had your Vitamin D levels checked? Do you even know the reason for being so tired - besides your grieving process, and obviously the CVID? I wish you could get your symptoms and side effects under better control....

Prayers and Peace to you, Leo and Lexi!!


Lilly64 20 months ago

@Sharon:

I tried to edit my comment to you but the edited part did not go through.... I forgot to mention that our second dog is a 2 year old Golden Retriever (and this is important to re-state). I bought Bella for my 18 year old daughter who was going through some very depressive times. Bella helped her tremendously with that depression, as I am sure Lexi will for you and Leo....

Prayers and Peace

Lilly


Crimsonwolf007 20 months ago

@Lilly64

I have been taking vitamin d every day. Last year before those results which were from October, my vitamin d dropped down to 9. They gave me 50,000 vitamin d to take every 7 days. It then went up again. But I guess it dropped again. It will be interesting if my antibodies drop any lower since those results from October. These recent blood tests that they did were more thorough. They said it could also explain my previous anemia for iron, b12 and everything else. Even though scary. I would just like to just have a diagnosis already.


Crimsonwolf007 20 months ago

? So I discovered I have new allergies to mold after getting 35 shots of allergens injected into my Arms a more thorough test then I had 14 days ago. However they feel that the antihistamine's did not completely flush my system after 4 days. Also that my originally allergies didn't show up, so I have to do it again minus the mold injections. It's going to be fun waiting to Sat. without any antihistamine medications. Plus also confirmed that my antibodies are low and may have to take vaccines and therapy next Saturday. They said I had low antibodies for the bacteria that causeses sinus infections and pneumonia. I find the science of the immunize system fascinating, but I hate being sick and the allergies. Plus it's freezing NY doesn't help having allergies while freezing.


Lilly64 20 months ago

@crimsonwolf: You are in New York so you are basically getting our weather here in Chicago of the past several days and it is YUCK! Today, it is finally sunny and in the 50's so hold on... It is coming you way...

That test you had for the sinus infection and pneumonia is the one that I have not had yet... He ordered the testing but I didn't do it - yet... My husband is very sickly and needs much of my time so I just never got around to getting the testing done.

And you are right - the immune system fascinates me as well. I don't know if you have been following this new cancer treatment, but it involves some of these proteins in the immunoglobulin that we speak of here. Now - that is truly fascinating to me; a cure for cancer through our own immune system!

Hopefully a cure for something we have too, but I believe the infusions are the cure for now. Is that what your therapy will be next week? The antibody infusions?

I have had one kick-ass ear infection again lately; my pain is unreal in my mastoid bone. All I did to flare it up to this pain level was scratch the bone and bam - extreme pain. I guess I must have hit something! But also have the clogged and swollen areas. I get these instead of sinus and it was my ENT that referred me to the immunologist for further testing. He said it just was not normal to have chronic ear infections without an underlying cause. And as I said before, my IgG and IgA levels are low, with the IgG decreased again this year with a test from a few weeks ago.

Best of luck to you! And please keep me up to date on your testing... I shall live vicariously through your treatments until I can get my own...


Crimsonwolf007 20 months ago

@lilly64. I hope your feeling better. As for me I feel totally exhausted at rock bottom. When I get like this it's hard to move, my glands hurt like hell along with other places I ever had a infection at it feels like. This coming Saturday first I have to redo the allergy tests. But there limiting the medication that I can take this week so it doesn't affect the allergy tests. They think this is what happened the last two times, no antihistamines. Last time I took a nasal spray 4days before. This think 7days is a better time. For some reason on the last two tests the things I'm allergic to weren't there but other items that I wasn't before were there now but not in full strength. If that makes sense. Other then allergies I'm waiting on more blood tests for the Haemophilus Strains and others and then she said we were going to talk about a game plan. Also I'm happy to hear the cold is end if it will be nice for my wife and I to take the dog to the park again.


Crimsonwolf007 20 months ago

@lilly64. I also saw something similar about the future of cancer treatments on a show called Vice. They are also using the cold virus and Reconstructed HIV to kill cancer.


Crimsonwolf007 20 months ago

Hello, went to the Allerigst, Immunenologist this past Saturday, they did the non-food allergy testing found a lot more items I'm allergic to we do food testing Saturday. I'm waiting on one other test for Haemophilus influenza that got delayed comming back from the lab. Then she wants to build up my immunities to the allergies which will help my sinuses, lungs etc from being inflamed and the perfect storm for infection. Then she is going to do vaccines for pneumonia maybe more depending on other blood results. If that doesn't work or it doesn't show up in blood we probably have to start therapy.


Lilly64 20 months ago

@crimsonwolf007: Wow... That sounds like a lot of work and testing... I believe when I went to my immunologist all he ordered was the pneumonia testing to see if I made antibodies. From there, I have no idea his plans since I never went for that testing.... However, I am now going to go this route with my 9 year old daughter. She was in ER yesterday and dx'd with pneumonia, which is her second in three years. She also has SO many problems with asthma, allergies, etc. So, as I did for my husband, my child will come first for treatments....

Good luck to you and let us know about the vaccines...


Lilly64 20 months ago

@Sharongoodwins:

Hi Sharon.... I truly hope that you are finding some sort of peace within.... I think of you very often.... I read your book and see how much your husband's death has rocked your world and I am SO sorry for your pain....

I pray for you and your son; peace and bless you...

Lilly


Alison 20 months ago

Hi there I have some questions if anyone can help?


Lilly64 20 months ago

@Alison: What are your questions? I would be glad to try and help, but there are also others on here who actually do their treatments, etc. for CVID.... Ask away....


20 months ago

Hi All,

will any of you be going to the IDF National Conference this year?

Or have any of you been before, I would love to hear about your experience?

Thank you,

J


Crimsonwolf007 20 months ago

This website has been acting up on me the last couple of days.


Crimsonwolf007 20 months ago

So went to Immunologist on Saturday,

My pneumo AB types 1,3,4,8,9,12,24,17,19,2,22,23,26,34,43,5,51,56,57,68 are low. For some reason 20,54, 70 are normal.

My haemophilus influenzae b IgG is 0.44 which is not the lowest it can be but not optimal. Immunoglobulin g is low at 628. Immuno M is low at 17. She said I have to go right way on Friday and take a specialized pneumonia vaccine Then wait 14 days take second phenumonia vaccine &haemophilus influenzae vaccine. Then I have to wait a little over a month do blood tests again if it didn't work they probably have to start therapy.


Crimsonwolf007 19 months ago

Has anyone prior to diagnosis or Immune Therapy had days where you could hardly move and it feels as though body ways 5000000 lbs? I feel that now I could barely get out of bed and had to go home sick from work. I hate this perpetual run down feeling. I can't wait for the tests and the vaccines already to be completed. I would love to have a diagnosis.


Lilly64 19 months ago

@Crimsonwolf007:

I had written a reply to you yesterday but this Hub didn't post it; I think it was because I had put a URL link in it and they don't like that.... I did not have time to rewrite it (I almost always copy anything I post before I post it for that very reason, but did not this time... aarrgghh.....). So I shall now reply....

As I have read, and I think I understand is that the specialized vaccine testing is where they use an inactive form of the virus, rather than an active form to see if your body makes antibodies. But I am not sure if that is what is meant by "specialized."

Also, I found a great article (and the link is below, but put it all together) but I am not "promoting" the site at all, but rather it has some great information about all the Ig's and what they mean being deficient.

I think your doctor is probably most concerned about your deficient IgM; mine is normal and I know they tested me twice to make sure it was normal. However, my IgG is at 547 (like my credit score...hahaha). Yours does not seem that low and may even be considered within normal limits by some medical circuits. So check out this site since it has a wealth of information.

As far as how you feel today, yes - I feel like that ALL the time. But my doctor said that just having CVID would not cause fatigue in itself; rather, he said that the illnesses are probably causing my fatigue. In fact, I nap twice a day and sleep upward of 10 hours a night and still feel exhausted! I am on disability, but I still have three children to care for. Driving is a total bust for me since I literally doze off at the wheel. So I totally can empathize with you on that one!

I hope that you soon get the answers and treatments you desperately need with all of your testing... I shall live vicariously through your test results and treatments until I can get my butt out of bed long enough to get myself tested...LOL! Okay, below is the site and I hope that this site does not bust me for sharing it again... It is merely informational and very helpful to distinguish from the varying degrees of Ig's and what they mean; it is in .pdf format (again - I put spaces in but it should run all together).... Try and be well and Peace to you!!

www. primaryimmune . org / wp- content / uploads / 2013 / 06 / Chapter-8-Other-Antibody-Deficiency-Disorders . pdf


Crimsonwolf007 19 months ago

Thanks for kind words and I will check out the info.


Crimsonwolf007 19 months ago

Had my specialized pneumonia shot this past Saturday. I was exhausted before i got it. I'm even more exausted after 21 days to my next two shots. It's interesting reading in this blog about getting bone chill after the Infusion of gamma guard and others. I have bone chill and not on the medication. I wonder if it would be the opposite .


Sharon Goodwins 19 months ago

Hi lily I'm glad you got the book.

It's been real tough.

Leo been very low.

Every day get up try to carry on.

I have a problem with helibactor pylori again so many years so many antibiotics Dr has now referred me to another specialist more bugs cause the swelling In my stomach.

I'm very tired. How are you


Lilly64 19 months ago

Hi Sharon..... I am glad to hear from you, but I can read into your pain and depression...

Don't the antibiotics cause the bugs in your stomach? How come you still get so many infections when you do the infusions? I'm sorry for the questions; you don't have to answer. I was just curious. I read so much about this stuff online so if there is something you tell me that I may have read to help you, that is why I ask.

My 9 year old daughter just got over pneumonia, and the medications wreaked havoc with her tummy too. So it was another week off school calming her tummy down with probiotics. I am going to ask for further testing for her because this is the second pneumonia in three years for her; unusual for a young child, I think. And she comes home from school sick ALL the time; always catches something!

I would like to say that I am doing okay, and I am compared to you losing your beloved husband, but I really am not. I take pain medication for my degenerative disc disease. These medications suppress the respiratory fluids. So when I get an ear infection or cold, I really don't have fluids to rid. Right now I think that I have a respiratory infection because my husband has woken me the past couple of nights to tell me that I am wheezing very badly in my sleep. And I am SO tired also.... Constantly fatigued, exhausted, can't stay awake..... But frankly, I am so tired of doctors. I go to them all the time with my fatigue issues and they rather ignore it. They do a couple blood tests and that is it. I have this lymph node "thing" going on now and I am to be rechecked in a couple months. As usual, my tests come back "inconclusive" for a definite answer to anything. There has got to be a reason for this fatigue, but the immunologist told me that CVID would not cause it, but the infections I get would cause fatigue. I need to pursue the immunologists testing that he ordered for me; I blew it off last year because I had other family stuff going on (my brother's death - which also still haunts me much of the time).

I hope you are getting help from family and friends to take care of Leo and yourself. What is the prognosis for your health issues, besides seeing another specialists? You are too young and Leo needs you; more/better infusions?

Please write back when you can, or you can email me at:

lilly . murphy @ yahoo . com.... Remember to put that email address all together and don't forget the period between lilly and murphy (this won't post if the Hub senses a web address or email).

God Bless and Peace to you..... Lilly


Sharon Goodwins 18 months ago

Hy Lilly

Oh my I'm on 24 antibiotics a day to fight the helibactor pylori

They make me so tired. Plus I have my own daily tablets. My belly gets so swollen causes me difficulty to breathe I was in hospital three enebolisers on I've steroids, I was struggling to breathe eh,

Oh my I'm fed up think this is fith lot antibiotics in a couple of months, the doctor finally spoke to a specialist being seen in hospital Tuesday.

I'm well fed up Hun.

Leo joint the gym, badminton he's doing well with hes Freinds.

I've made a nice freind Anelia she's like a sister now.

She's like me every day just carry on.

We help each other.

She's loverly, her little lad is Leo's freind.

Anelias husband is so good with Leo,

I find it hard without Bobby some days are harder than others.

Your daughter bless her, make sure they look into why she keeps getting pneumonia, don't let them forget, ring every week on any updates.

Ask to see a specialist in the children's hospital.

Hun I know how you are feeling, it's so hard you must really miss your brother, remember all the good times, things you love to do, makes you smile.

Get a candle say a prayer, talk to him hunn, no matter what anyone says, you will never forget the love.

I go to the grave every other day, some days harder than ever, but I keep bobbys garden looking pretty.

Did I tell you in the winter I went to bobbys garden, there was a soldier next garden with hes dog.

He's dad was the master of the dog, he died, he was trying to did up the garden crying.

I fell on the garden covered in mud, the soldier asked me lots about our Bobby, he said what do you think my dad will be doing down there now.

I said if he meets my bobby he was a London taxi driver he will be teaching your dad the roads in London.

He laughed then floods of tears bless him.

I slipped I was full of clay he helped me up and said you take care and went to get in hes car, I ran to hes car I had only thrown the keys in the bin.

My car keys, well he searched the bin and the garden and we couldn't find them.

Then all of a sudden I looked on bobbys garden the keys were hanging on a rose bush.

It was like Bobby telling me not to leave trying to keep me there.

I was so dirty my little boy said mum what have you been doing are you alright, bless him, I told Leo then I went for a shower I really hurt myself falling on the grave, I layer down and went to sleep.

I was shaking, oh my it was so muddy there.

But Bobby would have said oh no shall what are you doing you can't walk around looking like that.

I could hear him know eh.

I loved that man to the moon and back miss him so much, I did try to email I couldn't send it I will try again.

Try to get a tonic it may help you Lilly, I'm really sorry you have had such a alwful time, thinking of you love sharon


Sharon goodwins 18 months ago

Hy Lilly

Lexi is beautiful leoloves her,she's cuddly full of love, she lay on my bed at night don't move just lately she will bark in the car just looking at a empty seat, and indoors barks no ones there, I feel bobbys here he's around she knows eh.

She's brought a lot of love here. Lexi went for a makeover she looks like a puppy she's beautiful lots of love Lilly take care love Sharon x


Lilly64 18 months ago

Hi Sharon -

So good to hear from you! I did get your email but have not had time to write back; I am sorry about that. But I am going to write you back now on email rather than here. It will be more personal....

So check your email later and there will be a message from me... :)


Sharon Goodwins 18 months ago

Hi lilly I didn't get your email.

I have been so unwell with pneumonia antibiotics and more now on steroids again had great difficulty breathing I'm feeling better this afternoon how you doing sharon


Lilly64 18 months ago

Hi Sharon -

I am so sorry; I did not send the email because I got side-tracked with something else. I have not been feeling well at all lately either. I am telling my husband and my girls that this week I will get to a doctor and demand some answers to this horrendous fatigue that I deal with. I cannot function! I am becoming more and more of a home-body and basically afraid to leave the house because of falling asleep at the wheel or whatever. I just do not have the energy to even get ready to leave the house. The thought of it just exhausts me!

But I will send an email very soon to you... I am sorry to hear of your ongoing health issues and hope that you have good doctors who are working toward a permanent solution to bring you out of illness and back to healthy living! What is your prognosis as far as that goes? Do you see an upturn any time soon?

Peace to you and I will send the email soon... :)

Lilly


Crimsonwolf007 18 months ago

Can't wait until my third vaccine then the wait to do a blood test to see if vaccine took root. This process and diagnosis is a pain. Yesterday Could hardly move half way through the day. Exhausted my glands under my jaw sharp jolts of pain. All of my joints started to hurt gradually one by one all day to severe pain. Especially my right shoulder. Later in evening had a allergy attack couldn't stop sneezing. So much pain in joints I had to take a Percocet at night.


Lilly64 18 months ago

@Crimsonwolf007:

I am so sorry for what you are going through. So they are doing three vaccine tests to confirm the CVID diagnoses? That seems a bit off, since I thought they only had to do one and along with the blood results of the Ig's, you would have your diagnoses of CVID.

What is your pain from? Why do your joints hurt? I am constantly in pain and lately it has been extreme. But I have degenerative disc disease, so I am always taking percocet! My left neck, shoulder, arm and chest are in SO much pain right now and I had an EMG to see why. It turns out that the car accident that I was in two years ago that caused a new herniation at C3-C4 now has caused nerve damage stemming from it. The pain is quite unbearable, especially when if flairs.

However, from my hypogamma...... my left ear has been acting up as well (that is my main infection from the IgG being decreased). I have not gone further in testing like you have and after hearing your painful story, I will hold off for a while. I have three children to care for - one graduating next week and also having to drive to her college for orientation in a few weeks (9 hour drive!). So there is no way that I could take time to figure out a diagnoses going through what you are and being able to hold the fort down here. Doctors do not understand that whatsoever - that sometimes you just cannot take time off from life for all of this testing. I also have a very possible MS diagnoses on the back burner that just has to wait for more testing because I just cannot leave "life" to do it. So I have to hold off for some time.

How much more time and testing do you have to endure before they begin to make you feel better with infusions? If the percocet helps, then don't be afraid to take it; you deserve some relief! Also, the percocet will definitely help with your sneezing and allergies because it suppresses the respiratory system and "dries" you up.

Peace to you and keep us informed...


Crimsonwolf007 18 months ago

@lilly64 I hope you feel better. For some reason when ever I get run down and exhausted my joints hurt. I have

Two brain lesions as well two years ago but they didn't light up under dye and have had a ms scare as well but right now we just keep an eye on it. When I'm run down I tried to get as much sleep and take vitamins as usual but hasn't worked lately. I even take tumeric and when it's really bad a iron pill at a smallest amount which helps since sometime when I get anemic. My doctor says that I may not need the infusions if the vacacines show up in my blood.


Sharon Goodwins 18 months ago

Hi lilly

So sorry Hun you have been so unwell.

If you feel tired get dark chocolate or chocolate milkshake it will help you.

I think it sounds like thyroid have they tested you for that.

You must try to go out try not to stay in too much. My sister has bio polar she doesn't go out much.

I hope you feel better soon Hun lots of love


Crimsonwolf007 17 months ago

So got hit with another crazy hit of pneumonia. Which is crazy since it's right after taking the vaccine. It's lot better then I was but my lungs still feel like like their on fire. I have some fluid still in them. I finished antibiotics and I'm on Dulera. If it doesn't get better I have to go back to the doctor so I don't have a relapse so it's worse.At least I'm not coughing like crazy I hate that . I had to stop the allergy shots for now. It's funny my wife has a cold now, she gets a cold and I get pneumonia.


Selina 17 months ago

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Natalie 16 months ago

Anyone have any resources on getting financial help for the infusions? Once approved my insurance will only cover 80% of the treatments. I'm a single mom and have no idea how to.come up with the rest of the money. Of course I do not know yet exactly how much the treatments will cost but I do know they are quite expensive. My immunologist says it's highly important I get these treatments and my ENT agrees. I'm so tired of being sick every day of my life.


16 months ago

Natalie-

I don't receive anything to help, but I am lucky to be covered. I will tell you, that if you can choose to have the infusions anywhere BUT a hospital- it will be less expensive. I get IV infusions once a month in the Dr office(or I can get them at home with a nurse) for awhile, I had to go to an infusion center and it cost more than 4x's the amount because of the hospital pharmacy charges so much more and they charge a lot more to give you the infusion. Everything hospitals do cost more. I had an argument with the infusion center over the change in price- they said they had more overhead to pay for- and I told them that was their problem. If you can't afford to do business- they shouldn't have built the facility(it was new) and my med went from maybe $3,200 to over $12,000 plus the cost to infuse...and I was afraid I would get booted from being covered for it. I am back at the Dr office and a much cheaper price.

PS- the post from "Selina" is the worst kind of spam.

the subcutaneous infusions might be cheapest- because you don't need someone to help you after the first time.


Crimsonwolf007 16 months ago

I'm still in the diagnosis stage myself but it scares me on the financial end as well. I agree about the spam from Selina as well. I'm surprised it didn't get flagged earlier.


16 months ago

Natalie,

my husband does subcutaneous. We had a nurse at home for two months for training and now we do it ourselves once a week. He uses Hizentra and Hizentra will pay up to $4000 of your our of pocket. For example if his out of pocket is $3000 after insurance coverage then they will pay $3000.

There are other programs that your doctor can lead you to that will help with costs not covered by your insurance. Good luck!

J


Crimsonwolf007 15 months ago

Hello, yesterday I was at my sleep doctor she was tell MRI should also get tested for

primary ciliary dyskinesia Or one of its variants as well checking for immune disorders Anyone know anything of this disorder ? doctors are still trying to figure what I have.

Highlights of primary ciliary dyskinesia is : recurring or persistent respiratory infection, sinusitis, otitis media and male infertility which I have. But I also have low globulins and antibodies as well can you have both. Any thoughts ?


Crimsonwolf007 15 months ago

So amazingly. The pneumonia vaccines appeared to take in my blood so they are watching my other IG's . Amazingly my thyroid

Is back to Normal for three year. Also getting tested for primary ciliary dyskinesia and cystic fibrosis.


Abby 14 months ago

I'm a RN and 2 years ago I was diagnosed with hypogammaglobulemia after 10 hospitalizations in 2 years. I have been infusing Hizentra subq IgG and I honestly hate having this diagnosis along with many other ones. I haven't met anyone during my 10 years of nursing with this disease. And honestly I don't feel like any of my friends or family truly understand what I go through. There are many weeks I just can't stick myself and people look at me like I'm crazy bc I'm a nurse. Honestly I'm in need of a support group of people who understand what we go through.


Crimsonwolf007 14 months ago

I'm sorry Abby. I feel ya. It's taken me about 38 years to figure out what is wrong with me where people think your crazy. Just got a nasal biopsy positive result for primary ciliary dyskinesia. It would have been nice to have someone to talk to along the way just for sanity.


stella 13 months ago

Hello everyone here in this forum i am so glad that i have this great opportunity to come out here and share my testimony on how Dr idahosa was able to cure me totally from Hiv disease, i have been suffering from this Disease for approximately 4 Years now, i have tried various ways to get rid of this Virus out of my body, i have also purchase for Medical treatment from my doctor but they all failed, sometime back now while i was browsing the Internet i found some good quote concerning Dr idahosa Herbal Medicine, and how he has been using it to save souls from Different Disease including Cancer, someone also said she was been cured of Hiv from his medicine, and they gave out his contact details in case anyone needs his help, i decided to contact Dr idahosa and i told him about my Hiv illness he told me not to worry that he was going to send me his herbal medicine all i was to do is to send him my personal details and also my home address so he can post the Medicine to me, actually i did all that was required by this Man, i took the medicine just as prescribe by him, he told me to go for check up in the hospital which i did and to my great surprise my Doctor told me the Hiv Virus was no longer there, i even went to other hospital for better confirmation its was still the same thing, Today i am so happy that i am Negative again, Dr idahosa has given me reasons to share tears of Joy, you can reach to Dr idahosa on his email address at ( dridahosasolutioncenter@gmail.com) or call him on +2348134261542


Crimsonwolf007 13 months ago

Sounds like a scam to me


Fabienne 11 months ago

My name is Fabienne and I live in Belgium, Europe. This is the only blog I could find about CVID so I'm taking this chance to read and learn from you all. I was diagnosed two years ago. I was so upset and confused that I went straight home and never went back to the hospital. But I've come to the stage that I'm worthless, can't do anything fun anymore. Going to a market, working in the garden, can't do it anymore. I'm always sick, tired and have a lott of pain in my joints. Last month I had the courage to go back to the hospital and past monday I received my first infusion. It wasn't nice at all. Took 4 hours, couldn't find a vain at first, my arm is black and blue and verry sore. But now I'm feeling really sick. It started two days after the infusions and one week after I'm still sick, you can compare it with the flue. Does anyone else had this sickness ? On the 4th of january I have to go back for the second one, but I'm really scared. I had all my hopes set on these infusions, so that I would feel a bit better. My life's worthless now, can't do anything I like, I'm just sitting at home, I even had to cut down my wroking days at my job to three days a week, it's all I can do.


Crimsonwolf007 11 months ago

@Fabienne, Don't loose hope. I know

The feeing but you have to keep on trucking.

I'm in the process of being checked out for immune deficiency disorder but kind of stuck since the vaccines for pneumonia and such have showed up in my blood so that's on the back burner. But I'm also in the process for being checked out for cystic fibrosis and primary ciliary diskensia. They don't always respond that quick or frequent in here that I find do a search for the immune deficiency foundation which I think will help you. Also do a search on Facebook for immune deficiency maybe you will find a group


Fabienne 11 months ago

OK I will keep on searching the net. Thanks ! And despite all the sorrow and pain everyone has here, I wish all of you happy holidays !


Lilly64 11 months ago

Crimson: I am very sorry to hear that you are not fully diagnosed yet. That stinks!

I haven't been on here in a while because of moving, taking daughter to college, being sick, etc. However, I cannot believe this forum moderator has allowed those goofy posts on here of miracle cures. That most certainly does not help anyone on here that is truly going through the rounds of CVID and its associate illnesses. I know that HIV can be contracted more easily if your immune system is compromised but miracle doctors? No.

I actually have some disturbing news: My ten year old daughter is beginning testing for CVID. She has had FOUR pneumonia rounds in a year! After I told her doc about my alleged dx, a light went off, and thinks she could have it.

So here we go again! Every time she goes back to school, she comes home after several days really sick - like pneumonia sick, as I said. We shall see!

Peace to all and health for the holidays!


Crimsonwolf007 11 months ago

@lilly64 I hope

Everything works out for you you should

Check out something Called primary ciliary diskensia for your daughter as well one of the symptoms is numerous respiratory infections.


Lilly64 11 months ago

@crimson: Thanks for the info. She had her immunoglobulins blood work done yesterday so we will see in a few days what's up.

Peace to you and yours! And GOOD HEALTH!!!


11 months ago

Febienne,

Sometimes people feel ill after the infusion. Before you go back- make sure you drink lots of water. It will help ease things and also help them find a vein. Also, they premedicate me with tylenol and benedryl to ease the effects. Mine also takes about 4 hours, but they start the infusion very slow and increase the speed twice during the infusion. I had a reaction my 1st infusion and it ended up taking 8 hours!

Also, if you continue to react- ask them to test you for IgA antibodies. If you have low IgA it could be because you have IgA antibodies and are having an allergic reaction. IVIG can have traces of IgA in it. If you are reacting to it they do have a more pure form- but i guess it's more expensive and they use the regular IVIG unless people have an issue.

Good luck to you!


Jules Chev 11 months ago

I was diagnosed with CVID 5 years ago. It initially sent me into depression, but I have mentally recovered and am at peace with my medical issue. My first couple IV treatments did not go so well. I had a reaction - my heart rate skyrocketed, my temperature rose, and that was all followed by the chills for about 30 minutes. The staff had to stop and then later restart the treatment, so in all, it took about 8 hours. Ever since the initial treatments, I have been doing very good. Only one minor reaction in 5 years. Now my infusion rate has been highly accelerated so that it only takes about 1 hour and I lead a perfectly normal and healthy life. So I have a huge amount of sympathy and empathy for others on this blog that are having issues with treatments, but I share my experience as a light at the end of the tunnel. Everyone will react differently to treatments, and the rate at which the body accepts those treatment will vary. The type (supplier) of the medicine may also make a difference too. I take 30 MGs of Privigen and it has treated me very well.


Pal Joshi 3 months ago

Can anyone please let me know if they are selling IVIG medication?

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