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Living with CVID (hypogammaglobulinemia) Helpful Hints

Updated on July 18, 2010

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

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    • profile image

      Renee 6 months ago

      Diagnosis a year and a half now I am 53 and have suffered since I was 25 with autoimmune illnesses . I haveIGG subclass and have three out of four low IGG titers . Currently on IVIG Gamma Guard for just a little over a year . The worst part is the side effects for me . The migraine & the allergy part and currently premeds of steroid IV and extra I've fluids . I also have trouble with my potassium bottoming out acutely which I did have one episode of that about 5 yrs prior to diagnosis that they couldn't explain at the time . I have scleroderma , Sjögren's syndrome , celiac , Raynauds , gastroparesis and neuropathies that they think was caused from Sjogrens flare of vasculitis which that also has taken several main nerve branches and scarred them . Sometimes I do feel alone because I am not married and do not know anyone close that suffers or understands this illness : currently drive myself 1.2 hours to infusion and back . It does get rough sometimes after infusing for four hours . I am tiny so they have to do it slowly . Nice to meet everyone !

    • profile image

      6 months ago

      Summer- maybe your doctor can change the brand of IVIG you receive. Some people do better with another brand of the drug.

    • profile image

      6 months ago

      The bouts of pneumonia were most likely caused by the CVID. Hopefully, with the IVIG, you won't be sick nearly as much. Before I get my infusion, I had one today, I am given Tylenol and benedryl. It helps with side effects. Also drink a lot of water the day before, the day of, and after the infusion. Also, my nurse says to have something to eat during the infusion to raise your blood sugar. I experience the tiredness, my head feels very fuzzy for days. Some months are better or worse than others. My body does ache. but honestly, i feel a lot better than I used to feel. I used to go to work and come home and could barely function, never mind being sick almost all year long.

      I know it's scary to think you have to do this for the rest of your life. I was scared too and it's still scary. I try not to think about it. I just look at it like I am lucky. I AM Lucky. Good luck to you. Hopefully, that one year of awfulness will just be a memory of something you survived. I had a year like that myself. I hope to never have another one.

    • profile image

      Lilly64 8 months ago

      @summer gnann: wow is all I can first say to you. It is unreal what you have survived! I truly hope that someone on here responds to you who actually gets the injections because, although I have CVID, I do not get them. However, I have constant ear infections - like ones that go into my mastoid bone. Having a bad flare right now so it's time to go back to ENT - the ONLY doctor who saw a need for me to pursue the hypogamma with an immunologist.

      Going through all of this, however, I hope you don't mind if I do comment on some of your issues. First and foremost, stress can and will wreak havoc on your physical (and mental) being. That being said, your CVID was dormant until you put your body through unbelievable stress, thus causing the secondary issues you state. You say that you were in a high stress level job (I too worked at a bank and I know how that goes!). And you also have two (no doubt, beautiful babies) to care for. And you are single, trying to do it all. I am sorry, but you can't do it all. And so your body reacted, and reacted very very badly.

      Now you say that you were "forced" into disability. So was I, and I was not happy about it either. I nearly fell to the floor, as you did, refusing to accept that I couldn't work anymore. It was one of the worst feelings I have ever had, giving into my illnesses.

      However, this is a "gift" to you - to use this time to get well, to be with your children, and to regroup your priorities. I sacrificed a lot when I went on full time disability but it was a wake up call to get my health in order and frankly, to teach my children what is truly important - them.

      And I am so not saying that you can't ever get back to work, but obviously you need something less stressful.

      I am very sorry that I did not answer the questions that you asked here but I saw a cry for help other than the effects of the infusions. I have been through major illness with myself and my husband, his four years of illness following my four years! But we both continue on with our problems every day. However, he is finally able to look for some work after all these years.

      Hang in there and listen to what your body is telling you. Peace....

    • profile image

      Summer Gnann 8 months ago

      I've dealt with 3 or 4 bouts of pneumonia a year for goodness knows how long... I just learned how to suck it up and muster through, similar to the way I did with my migraines. I dealt with tremendous migraines at leasth 7-10x a month. But I had a high stress job in banking. January 2016 I collapsed with the worst headache of my life (before leaving for work on a Saturday morning). Thankfully my mother had arrived to watch my children and immediately called an ambulance. My diagnosis was Acute Disseminated Encephalomyalalitis (A.D.E.M.) This is a neurological disease that only effects 8 out of 1,000,000 people. It caused my brain to swell to rapidly that they had to induce a coma. When I came to, a week later, my entire right side was paralyzed. I had to relearn EVERYTHING. Talking, eating, peeing, walking. I underwent 5 rounds of plasma pheresis which is where my bloodwork started to send up some red flags. After got out of rehab my PCP sent me to collaborate with a hemotologist and immunologist to get to the bottom of my bloodwork. Turns out the cause of my ADEM was a nasty bout of pneumonia. In fact while I was comatose my left lung actually collapsed. I've now been on IVIG treatmentstarts since November. The side effects are horrible. Chills, body aches, mind numbing headaches, racing heart, and overall tiredness and lethargic feeling. It only lasts about a week and gets better with each day. My neurologist is trying out a steroid this time around for the headaches since they cause vomiting also. I'm already on 4 headaches preventatives including botox from the neurological damage. It's just been an overwhelming year in general, and to find out that I now have hypogammaglobulinemia and will be on IVIG treatments for the rest of my life... it just seems to be the cherryear on top. I'm not sure if some of these effects are still some of the lasting effects of my ADEM? They can take 1-2 years to clear even though my one year check up confirmed all my swelling has officially cleared! Or maybe this is just how my body is going to react to the IVIG? Does it get better? I just feel so lost. It's been SUCH a hard year. I'm 30. A single mom of a 6 and 4 year old who's been forced onto disability for the past year. I'm wearing thin and I need a silver lining!!

    • profile image

      Pal Joshi 14 months ago

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

    • profile image

      Jules Chev 22 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.

    • profile image

      22 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!

    • profile image

      Lilly64 22 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!!!

    • profile image

      Crimsonwolf007 22 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.

    • profile image

      Lilly64 22 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!

    • profile image

      Fabienne 22 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 !

    • profile image

      Crimsonwolf007 22 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

    • profile image

      Fabienne 22 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.

    • profile image

      Crimsonwolf007 24 months ago

      Sounds like a scam to me

    • profile image

      stella 2 years 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

    • profile image

      Crimsonwolf007 2 years 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.

    • profile image

      Abby 2 years 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.

    • profile image

      Crimsonwolf007 2 years 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.

    • profile image

      Crimsonwolf007 2 years 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 ?

    • profile image

      2 years 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

    • profile image

      Crimsonwolf007 2 years 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.

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      2 years 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.

    • profile image

      Natalie 2 years 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.

    • profile image

      Selina 2 years ago

      i am from united kingdom i just want to pass this to everyone that is sicking from any kind of disease that the solution to all diseases and sickness have arrive, i was just cured by Dr idahosa the great healer after i have been passing through stress all day and night. i never know i was going to be cured of this HIV sickness in my life cause they said there is no cure, i am proving all those that said that there is no cure wrong cause i have just been cured with herbal medicine of Dr idahosa the great healer, i cant talk cause my heart is full of excitement and i am using this medium of my testimony to inform you all to contact this man for any kind of sickness and he is ready to help you solve your problem. please if you are out there passing through any sickness kindly contact him here through his email address: dridahosasolutioncenter@gmail.com he is waiting for you. once more i say a very big thank you for what you have done for me, i will keep my promise to keep sharing testimony about what God have use you to do in my life.

    • profile image

      Crimsonwolf007 2 years 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.

    • profile image

      Sharon Goodwins 2 years 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

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      Crimsonwolf007 2 years 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.

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      Lilly64 2 years 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...

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      Crimsonwolf007 2 years 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.

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      Lilly64 2 years 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

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      Sharon Goodwins 2 years 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

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      Lilly64 2 years 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... :)

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      Sharon goodwins 2 years 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

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      Sharon Goodwins 2 years 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

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      Lilly64 2 years 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

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      Sharon Goodwins 2 years 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

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      Crimsonwolf007 2 years 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 .

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      Crimsonwolf007 2 years ago

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

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      Lilly64 2 years 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

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      Crimsonwolf007 2 years 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.

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      Crimsonwolf007 2 years 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.

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      Crimsonwolf007 2 years ago

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

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      2 years 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

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      Lilly64 2 years 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....

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      Alison 2 years ago

      Hi there I have some questions if anyone can help?

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      Lilly64 2 years 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

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      Lilly64 2 years 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...

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      Crimsonwolf007 2 years 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.

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      Crimsonwolf007 2 years 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.

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      Crimsonwolf007 2 years 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.

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      Lilly64 2 years 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...

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      Crimsonwolf007 2 years 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.

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      Crimsonwolf007 2 years 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.

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      Lilly64 2 years 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

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      Lilly64 2 years 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!!

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      Sharongoodwins 2 years 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

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      Sharon Goodwins 2 years ago

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

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      Lilly64 2 years 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...

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      Crimsonwolf007 2 years 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 ?

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      Crimsonwolf007 2 years 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.

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      Lilly64 2 years 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.... :)

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      Lilly64 2 years 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

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      Sharon Goodwins 2 years 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

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      Crimsonwolf007 2 years 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.

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      Sharongoodwins 2 years 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

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      Sharon goodwins 2 years 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

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      Sharon Goodwins 2 years 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

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      2 years 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.

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      2 years 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!

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      Forrest Mason 2 years 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

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      2 years 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!

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      Lilly64 2 years 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

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      Sharongoodwins 2 years 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.

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      Sharongoodwins 2 years ago

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

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      Sharon Goodwins 2 years 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

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      PATRICIA 2 years ago

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    • profile image

      Lilly64 3 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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      Jordan 3 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!

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      3 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.

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      Lilly64 3 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

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      barbie52 3 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

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      Sharon g 3 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

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      Sharon g 3 years ago

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

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      Lilly64 3 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

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      Sharon g 3 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.

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      3 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

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      Lilly64 3 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!

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      Rhonda 3 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.

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      sharong 3 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

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      Sharon g 3 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

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      3 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.

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      3 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.

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      3 years ago

      Sharon

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

      J

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      Sharon g 3 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

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      Sharon g 3 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

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      Lilly64 3 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.....

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      Sharon g 3 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

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      Sharon g 3 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

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      Sharon g 3 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