I'm Allergic to My Hormones!-Awareness for Progesterone Induced Anaphylaxis-Autoimmune Progesterone Anaphylaxis, Part 2

Hoping to spread awareness for the autoimmune diseases, AIPA & APD, to help others that remain undiagnosed, untreated, and medically neglected.
Hoping to spread awareness for the autoimmune diseases, AIPA & APD, to help others that remain undiagnosed, untreated, and medically neglected.

My First Clue- High Histamine and How it can Affect your Body

After going over and over my story in my mind and researching nonstop for many years, I made an unusual connection. I made several connections actually. I’ve always had allergies and allergies are an unnatural immune system response to something that the immune system considers foreign.

I woke up one morning with puffy eyes and a few hives. Not only did I have the puffy eyes, and hives, but I also had horrible stomach pain, burning muscles from what doctors diagnosed as fibromyalgia, and I felt like I was going to have a panic attack. I took the antihistamine Benadryl for the hives and facial swelling, went to bed, and when I woke up, most of my symptoms were better. Almost all of them!

It was very strange that Benadryl, for allergies, would help burning pain and my severe stomach spasms. So, I started researching how the symptoms of high histamine levels could affect your body. I already knew histamine caused allergic reactions like hives, itchy/watery eyes, stuffy nose etc. but I had no idea how close to death I had been on so many occasions. I honestly just thought that I had manifested the, “death is near,” feeling in my own mind. I picked a physically functional day for me and I immediately went running to my family doctor with the information I had found. I demanded testing for high histamine levels (Immunoglobin levels). Reluctantly, he ran the tests and found out that on a good, functional day, my IgE level (Immunoglobin E level) was 218. It was never determined what my IgE level was on days where I could not function at all or how high it was when I had to take a trip to the emergency room for anaphylaxis. Normal range for IgE is 0-100, so I was out of range even on functional days. The doctor made an emergency appointment to Allergy and Immunology and I was seen by my newest specialist within 2 days. YES, within 2 days and not a few months!

Finally Diagosed with the Progesterone Allergy- Autoimmune Progesterone Dermatitis (APD)/ Progesterone Induced Anaphylaxis (AIPA)

My visit with this new Immunology/Allergy/ Internal Medicine Specialist was the first time I had seen a doctor that listened to my story, read my emergency room records, went through my journal of symptoms with dates, and asked me hundreds of questions. He may not have had all the answers but at least he was willing to help find the answers.

Going through my journal of symptoms and dates, there was a definite pattern that I drew his attention to. All of my major symptoms were starting to occur almost exactly 10 days before my menstrual cycle (period). He spent 2 hours with me, ran tests right in the office that same day, and I had my first diagnosis. Liver disease was the first that he found right off of a CAT Scan and blood work from 3 years ago that my previous doctor had done. I had severe reactions to the quit smoking drug (Chantix) she prescribed. My previous doctor flat out lied to me about my test results because she didn’t want a malpractice lawsuit on her hands. The other condition that I was diagnosed with was the main condition that caused most of the other symptoms. It was complicated and they all intertwined with each other.

My Immunologist shot Depo Provera (Progesterone) into my upper arm and waited to see if there was an allergic reaction. Progesterone is the female hormone that the ovaries release large amounts of beginning about 10 days before menstruation. Well, I had a small external skin reaction within 10 minutes from the injections. A few hours later I ended up with very large, painful lumps under the skin from a delayed reaction. Those lumps lasted several days until my histamine level at the injection sites dissipated . The test was very obviously positive.

As the doctor explained and apologized for the diagnosis, I began crying, actually a happy cry, and explained to him that I was thrilled to just be diagnosed and have possible treatment options and quality of life. Of course, I didn't want to be sick like this, but I was and I needed answers to be able to have some sort of treatment options. It was such a tremendous relief to know what had been wrong with me for so long. It was also a huge relief to know that I had not been suffering some sort of mental disorder and manifesting all of my symptoms in my mind. The test proved that I have a condition called Autoimmune Progesterone Dermatitis. In my case the more appropriate medical terms were Autoimmune Progesterone Anaphylaxis, Autoimmune Progesterone Dermatitis with Anaphylactic Reactions, or Progesterone Induced Anaphylaxis. OK, so not all doctors are heartless, ignorant, and arrogant, just most of the ones that I had seen. I had finally found one that actually cared and was willing to put the time and tests into solving the big mystery.

Awareness for the Progesterone Allergy!

There is no awareness for this kind of autoimmune disease which is why I’m writing this. Not even a majority of doctors are even aware that it exists and I’ll try and explain why. This is my story and documentation of the 10th diagnosed female with this disease since it was first discovered in 1921. I am supposedly only the 10th female diagnosed! There are about 50 reported cases of Autoimmune Progesterone Dermatitis which consists of skin eruptions like rashes, hives, lesions, and various infections that begin to occur anywhere from 3 to 10 days before menstruation. My case is different and the severe, extremely rare form of the Progesterone allergy.

The disease is usually not life threatening and just a constant disabling nuisance until diagnosed and treated BUT I had been suffering from full blown anaphylaxis. An example of anaphylaxis is when someone eats peanuts, shellfish, or gets stung by a bee and has such a severe allergic reaction that they require emergent injections of Epinephrine (Adrenaline) and antihistamines to prevent shock and death. I am so severely allergic to my own Progesterone that I was literally suffering from anaphylaxis for up to10 days most months.

When I began going through puberty and my ovaries started increasing the female hormone Progesterone, my immune system, due to high histamine levels (Ige level), began recognizing my own hormones as a foreign substance (allergen). It is my belief that the ignored and undiagnosed high histamine levels are the root cause and source of my autoimmune disease.

My Immunologist and Gynecologist listen to me at my appointments now and I’ve gained quite a bit of respect from the both of them. They've put the information I bring them in my medical records, research my discoveries on how I've survived, and have approved my treatments that I developed. My Gynecologist and Immunologist are currently on call for me if there is ever an emergency.

I have survived anaphylaxis without proper diagnosis, medical attention, or medical treatment on numerous occasions. I was forced by the medical profession to research, treat with natural treatments, and survive on my own. It can be done by anyone, remember the mind set “I can help myself!” I have survived at least 15 full blown anaphylactic reactions in the last couple of years that would have normally caused death without Epinephrine injections.

What is really unusual about my case is that I sometimes didn’t even develop hives or swelling and my reactions were internalized, making diagnosis extremely difficult because of no external indications. My current specialists no longer bother me about quitting smoking because it could very well be one of the things that kept me from shock and death by suppressing some of my autoimmune reactions. Yes, smoking is bad, I certainly do not recommend it as a form of self medication, but currently in my particular circumstances, unexpected death from anaphylactic shock seems worse to me... Continued in Part 3 (See Below for Parts 1 & 4 and my new website for awareness of AIPA/APD)

To get Testing and Diagnosis

List of Doctors and Clinics that are aware of, test, and diagnose Autoimmune Progesterone Dermatitis / Autoimmune Progesterone Anaphylaxis:


Dr. David Wright (Allergy, Immunology, Internal Medicine)
Central Illinois Allergy and Respiratory (AIR)
543 W Miller St Ste A
Springfield, IL
(217)522-5596

Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
Phone: 815-744-2300
***on a side note, if anyone traveling a distance to be tested, I would call and talk to him and let him know ahead of time. The progesterone is not something they have in stock at the clinic to test. Also, my sample was in sesame seed oil, so if you are allergic to nuts, ask for a different base. Hope this will help some people.


Dr Peter Lee (Ching Sang)
Allergy and Immunology
(250) 370-0318
Suite 250, 1641 Hillside Ave, Victoria, BC V8T5G1 Canada
***There are two Dr. Lee in Victoria who both practice Immunology , so make sure you have the correct one:)


Instituto Universitario USP Dexeus
C/ Sabino de Arana, 5-19
08028- Barcelona. España (Spain)


Dr. Katheryn Brown
Allergy Clinic of Tulsa, OK
(918) 307-1613

Mayo Clinic

Arizona
800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain time, Monday through Friday

Florida
904-953-0853
8 a.m. to 5 p.m. Eastern time, Monday through Friday

Minnesota
507-538-3270
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday

International Appointment Offices

Mayo Clinic in Florida
904-953-7000
904-953-7329 (Fax)
Intl.mcj@mayo.edu
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday

Mayo Clinic in Minnesota
507-284-8884
507-538-7802 (Fax)
Intl.mcr@mayo.edu
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday

Mayo Clinic in Arizona
480-301-7101
480-301-9310 (Fax)
Intl.mcs@mayo.edu
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
Required Information

When arranging an appointment, please provide:

* the patient's name as it appears on the passport (last, first, middle)
* patient's gender
* patient's address
* patient's date of birth
* direct patient telephone number
* direct patient fax number
* patient's email address (if available)
* a brief explanation of the current medical problem (in English)
the preferred date of appointment
* whether the patient will need an interpreter, and if so, what language


Please check this list frequently, as I will update when I find new docs/ clinics!

More by this Author


Comments 66 comments

vox vocis profile image

vox vocis 6 years ago

Dear, I sympathize with you. I have this disease: chronical neurodermitis, urticaria - worst form, but it´s not actually a good diagnosis, no doctor in two states can explain what this really is or how it can be treated. My skin is often red, full of circles and lines and they burn, oh boy, do they burn :-( It is manifested every day so I have to take antihistamines on a daily basis.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Vox, I'm so sorry to hear about your condition! Urticaria is horrible, I was breaking out from sweat. I certainly know what it's like to not be able to find the source of the problem. I researched and pushed doctors REALLY hard until they found some answers for me. My immunologist was my last hope before taking a trip to Cleveland Clinic for extensive testing on rare genetic disorders. Have you done your own research or made any connections with the cause? Is it some kind of allergy since urticaria is typically an autoimmune response? Really curious about your disease, as I've never heard of it.


vox vocis profile image

vox vocis 6 years ago

I did all the possible tests to allergies - nothing, they say I don´t have an allergy. I noticed though, that when I have chronical urinary tract infections it burns very much ´´down there´´ and all over my skin (when I succeed to get rid of the infection at least for a month or two, urticaria is weakening), I have no gynaecological problems for the last three years but I think it must be some kind of bacteria causing this because my body is wild red when I eat sugar (bacteria feed themselves with sugar). My next step is to see a urologist to do all the tests I can there.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Vox, I used to suffer repeated urinary tract and kidney infections along with others. Mine were caused by a systemic yeast infection called Chronic Candidiasis (Yeast syndrome), it feeds on sugar and carbohydrates, but most doctors refuse to recognize it as a medical condition. It took quite a few years to get diagnosed. Not sure if my autoimmunity allowed the infection or the infection caused the autoimmunity. Could be either. I found an internal medicine specialist that ran an Elisa Assay for a positive diagnosis. Along with verifying my symptoms. I was seeing gynecological specialists by the age of 14 and it wasn't diagnosed until I was 26. The doc put me on 2 weeks of Diflucan, no sugar/carb diet, and Probiotics. I still had the infection even after treatment so I control it by avoiding sugar for the most part, taking a Probiotic called Threelac, and eating organic coconut oil. Treatment of the infection usually causes a massive worsening of symptoms called a herxheimer reaction that last for a few days to weeks (it's horrible). The infection can cause urticaria, autoimmunity, frequent bladder/urinary tract infections, pain in muscles and joints, stomach and intestinal problems, tons of symptoms. It's another one that's very hard to diagnose because of all of the varied symptoms. Here's a really informative article:

http://www.cfs-recovery.org/docdarren2.html

I'd have to say that if you're having a big reaction to sugar then your condition is probably yeast related and your best bet would be to search high and low for a doc that will run tests for it. Just a guess. Hope this helps :)


Msyvet 6 years ago

Thank you so much for all of the information that you have given to me. I feel as though I can finally get a hold of this uticaria and begin to explore my options. Reading your hub helped me feel as though I have not been alone and that I won't be in the future. You rock She-ra!

Ms Yvet


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

AHHHH,Msyvet, Thank You So Much! Working on instructions for you for the cream. I wish you so much luck with the doctors and diagnosis. I will send an email in a bit! :)


frogyfish profile image

frogyfish 6 years ago from Central United States of America

Your condition must be quite rare - you have written information that should help many who suffer similar situations. Thanks for being a persistent searcher, and for sharing your resolution and hope in this hub.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Frogyfish, Thank You So Much for your comment, I truly appreciate it! And Your Welcome, my research will never end and I will continue to publish in hopes of helping others. I certainly do hope that I can help many others. I just can not believe that I am only the 10th person that suffers this. I firmly believe that many women may suffer from my specific condition or conditions similar to mine and they just can not get a diagnosis or proper treatment. I know that there are many that have given up hope, I was pretty close. A person really begins to lose faith in the medical industry and even in themselves. I hope to at least be able to bring a little peace, hope and motivation to those who have to deal with similar situations.


brooke 6 years ago

hi im unsure if im on the right page, but just thought I'd ask has anyone heard anyone being allergic to Progesterone hormone. I have had a bad rash on my legs for about 9 yrs and found out last year it was guttate psoriasis. And I'm soon to believe it is a reaction from progesterone because it has been around ever since i have been on the pill and depo needle which realises alot more progesterone and also when i was pregnant it got much worse, most people believes it gets better when pregnant not me thought. and while not being on any contraceptive for a month now it has nearly all cleared up. my doctor said he has never heard of this happening but anything possible. If anyone has heard of this let me know. thank you


brooke84 profile image

brooke84 6 years ago from Queensland

sorry i just realised put this in wrong place.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

It's ok Brooke84, thanks for reading and your comment! You put you're comment/questions at the right place. I sent you an email and answered your question here on HP. Please get back to me, I can most likely help you!


Cheeky Girl profile image

Cheeky Girl 6 years ago from UK and Nerujenia

Hy She-rah: I have recommended my friend to check out your hub pages, as they are very detailed and full of information that she may find useful. In their own right, they are well worth reading and checking as they answer many questions people would have. Great hubs! : )


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Cheeky Girl! Thanks so much for referring your friend and your wonderful comments. I hope these hubs are informative for others, some things are really hard for me to explain, my situation is a bit complicated. I hope the information helps so many others. I have had similar issues as your friend, kind of has to do with my autoimmunity and hormone issues, but my treatment has helped me in that area as well. I do hope she benefits in some way.


stephie 6 years ago

can you tell me which doctors you used? I have been going from doctor to doctor and I am sure I have autoimmune progesterone dermatitis....it is year 3 for me of severe angioedema, hives etc. I can't find a doctor that will listen to me! I live in Toronto Canada...I will go anywhere


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Stephie, been waiting anxiously to hear back from you. So sorry, but I didn't get the email you sent thru hp. I did get your new one. Will send an email back right now! Thanks for commenting here!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Stephie, I tried replying back to your email and it won't go thru. Do you have another email address or another way to contact you? I posted back to you on my forum as well.

http://www.awarenessforaipa.com/blog


Tracey Brogan 6 years ago

This is what I think I have and have finally come across. I've been telling them for years it was progestrone causing the problem (always before my period).

They kept telling me it was estrogen. UGH!

I took yasmin for a couple of months, stopped, got a large pimple that burst, got infected, then the hives started. Have had them for about 5 years now.

I AM so glad to have a name to bring to the doctors now!!!

It took several doctors to finally convince even one it might be hormonal to begin with.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Tracy! Thanks so much for the comment and glad you found me! I believe that many women have this condition and it remains undiagnosed their entire lives. Dealing with the doctors is a complete nightmare when you have autoimmune progesterone dermatitis/ anaphylaxis(APD/ AIPA). Have you visited my website? www.awarenessforaipa.com There are other stories there in the forum. I have been in remission for 7 months now using an all natural estrogen cream that I developed. I'm extremely sensitive to just about everything so my treatment options were very limited. Parts 3&4 of this series explain my treatment and how I've been able to regain my life. It is truly a very disabling condition that doctors just do not understand! Stay away from hormonal birth control, they can actually be a cause of this autoimmune disease. As far as the pimple issue you had, you may want to research a bit on staph or MRSA. I have problems with staph and other infections due to being autoimmune. Can become very dangerous and life threatening if not taken care of properly. Please email me or contact me via my forum: info@awarenessforaipa.com if you have any questions or need help with doctors as far as getting diagnosis and treatment. I'm more than happy to do what I can to help!


Erin 6 years ago

Like many others I am convinced I have APD. I knew my skin conditions were related to my cycle long ago but could never put a name to it. I stumbled on APD on the internet and started crying. I have had the swelling of the face since I was a teenager along with eczema, itchy skin, tingling sensation, hives, but my main problem is the constant fever blisters (or at least that's what they keep telling me they are). I also have started having random staph infections on my skin, do you find this with your condition or others who have it? I am nervous to approach my doctors with this and would love some advice as to how I should attempt this. Should I start with my gyno/OB or my doctor (internal med)? I have searched out both specifically and adore them because of the level of caring and listening. I would appreciate any advice you have. Thank You for your message of hope and awareness!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

HI Erin! Thanks so much for reading and commenting! Don't worry, there is hope and you can have somewhat of a normal life again. Not sure if you continued reading the rest of my series but I explain my treatment and how I've gone into remission (the links are above). It is a natural treatment that the docs had nothing to do with and one that I developed on my own. Myself and 2 other people so far are using it for AIPA/APD and we have maintained remission. That doesn't mean that it will work for everyone and it is experimental on our part but very successful so far. The condition is considered very rare by the medical profession and it is extremely hard to find a doctor to test and diagnose as most have never even heard of it. You may want to try Allergy/Immunology, your internal med, or OB/Gyn, talk to ALL of them. Allergy/Immunology is your best bet and go in fully armed with all the info you can find, including my story! The test that needs to be done is with Depo Provera. If your on birth control get off of it immediately! I can explain what my husband and I did for many years to prevent pregnancy but I'd prefer to do it thru email. My email is

info@awarenessforaipa.com

Be very careful with the facial swelling, it can eventually lead to your throat swelling like it did in me. APD can eventually lead to AIPA, the form that I developed due to lack of diagnosis and treatment and it is the severe allergic reaction causing anaphylaxis. You may want to talk to one of your docs about getting an Epipen just in case. I carry one with me at all times and also have one at home. I never had one until I was diagnosed and haven't had to use it since I started treatment but I do carry it just in case.

YES, I have problems with staph and the blisters on the lips aren't really fever blisters, they're an allergic reaction! I have been what the docs call "colonized" with MRSA (antibiotic resistant staph) since the age of 19. I had it in my throat, neck bones, and shoulder joints. Took 3 months to recover from and my doc told me that I would always have it. I never really have problems with it becoming infectious since 19 and am not contagious unless I have open infection like the spider bite looking marks (small pimples on my arms/legs). I've only had 2 breakouts fairly recently that I got rid of right away and was probably stress related. Take Turmeric if your stomach allows you too and that will stop the breakouts and prevent them. Pretty much, EVERYONE is a carrier or "colonized" with it. It just depends on the individuals immune system as to whether it actually causes infection or not. I would also see if your docs can do a MRSA test. If they're treating you with a sulpha antibiotic, then they probably assume it is MRSA. It's one of the only drugs that's still effective against it and it never clears the infection completely. AGAIN, it is highly contagious in the infection state (spider bite looking marks, boils, etc and can infect ANY part of your body) but you are NOT contagious if you do not have open infection. Your doctors probably haven't told you that! and they're not really telling anyone that. MRSA is rampant right now and very dangerous if your autoimmune. Please do contact me thru email or on my forum at www.awarenessforaipa.com and I will help with any questions/concerns you may have. Hope this helps!!!


myst 6 years ago

Hi She-rah. I've suffered from migraines associated to my cycle for as long as I can remember. I've tried everything and I mean everything! I've been to pain management specialists, chiropractors, herbologists...everything. I'm currently undergoing allergy elimination treatments. I'm not quite sure if they will eliminate my migraines, because I haven't been treated for my hormones yet (I just started the treatments a few weeks ago). I've been treated for things like vitamin B, A, and grains. My next treatment will be for the hormones, but I came across your web page and my heart went out to you. I've never had reactions that bad, but my migraines usually last 3-5 days so I do know about suffering. Anyway I just thought maybe you would be interested in these treatments, as I've already noticed a difference in the severity of my migraines since starting these treatments. Its called NAET and here is the link http://www.naet.com/. I wish you the best, and thanks for posting your webpage!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Myst, Thank you so much for your comment! So sorry to hear about your migraines, I too have suffered from severe headaches for days on end. I seriously think you might see a huge difference in your migraines when you start the hormone treatments! I know that my estrogen cream has made a miraculous difference in my Progesterone allergy. I will certainly check out the NAET program. I've read about it before but, if memory serves me right, it has to do with a special diet, supplements, and detox. The supplements and detox I can handle but the diet causes me to lose weight very quickly and I get down to dangerous levels (88lbs.) It's absolutely amazing the amount of illnesses, diseases, and autoimmunity allergies can cause. I have another hub on how high histamine/Allergies cause these various things if you wanted to take a look.

http://hubpages.com/health/Explanation-of-Allergie...


hamel 6 years ago

Hi,

I have been going through a lot of symptoms on here for the last six months. After seeing several doctors, with a diagnosis, I finally posted my symptoms online and email several doctors requesting help. Recently a doctor told me to research "Progesterone induced autoimmune urticaria" and this site came up. How is this different from anaphylaxis? And could you lead me to perhaps lead me to areas about this and treatments for "Progesterone induced autoimmune urticaria"? All I have been able to find is scholarly articles.

Any help is very much appreciated! Thank you!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Hamel, Thanks so much for your comment! What the doctor told you to research is the same thing that my hubs are about. The condition has a few different names: Autoimmune Progesterone Dermatitis is the "Progesterone Induced Autoimmune Urticaria" that your speaking of. It is an allergy to progesterone causing allergic reactions that affect the skin only, causing hives (urticaria), rashes, blisters (especially of the lips), swelling (mostly facial), acne, etc. There are only about 50 diagnosed and known cases reported. The condition that causes anaphylaxis is the same condition only much more extreme and a severe life threatening allergy to Progesterone. This is the one that I suffer. I am only the 10th diagnosed and documented case since 1921 but there are many others that suffer 1 or the other and just never get diagnosed. That is why your not finding much on this specific autoimmune disease. Doctors seem to think that it is very rare, but it is not as rare as they think. They just never test,diagnose, or treat properly! The Anaphylactic severe form affects your organs causing breathing distress, stomach spasms, bladder spasms, cardiac issues, seizures, shock, etc. Maybe just 1 or 2 organs are involved and sometimes it causes hives and swelling along with the organ involvement but not always. Not sure if you read the rest of my series Parts 3 & 4, but I go on explaining how I was diagnosed and what my treatment is. Usual treatment offered by doctors are with synthetic estrogen (cancer causing kind), Lupron injections to kick the female body into menopause, removal of ovaries (oophorectomy), or a hysterectomy. I am using an all natural, organic, and beneficial estrogen that I developed and have currently been in remission for 11 months. My treatment is Patent Pending as of 11-3-10. No ER visits or organ failure. I do still have my glitches because I am autoimmune but my anaphylaxis is under control. A few other women that have this condition are also using my treatment with a great deal of success. My website devoted to awareness of this condition is:

www.awarenessforaipa.com

There is a forum with other stories like ours, a page with the estrogen that I am using from Pueraria Mirifica, all my links to my complete story, and other links to my research about this autoimmune disease and treatments. Links to Parts 3 & 4 can be found above or on my website. Please let me know if I can be of any more help!!! My email is: info@awarenessforaipa.com

if you would like to contact me for further info.

Have a great day!


Jennifer 6 years ago

I had the same issue years ago, but it also included my ovaries, uterus, estrogen, etc. I was treated through NAET [Nambudripad's Allergy Elimination Treatment] for all of them, and never had a problem with a reaction to my hormones and organs again. My periods went from totally awful with migraines and in bed for 3 or more days, to just another day of the month.

More info can be found at www.naet.com

I hope this helps other too.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Jennifer, thanks so much for your comment! I had another person comment on my hub about the NAET. I had heard of it before but I've read so much that I was getting it confused with the allergy elimination diet, which I didn't fair so well on. I just took a closer look to refresh my memory and it sounds very promising! Looked to find a doc in the area that's trained in this specific method and the closest one is 100 miles away, not so good at traveling. I'm going to call around to some places closer to home and see if I can find a doc that would be willing to get certified/trained in this method of treatment. I'm always open to new treatments and completely believe in the alternative healing methods, that truly do work miracles. Obviously or I wouldn't be doing quite so well, lol. Thanks again and I will update if/when I can try the NAET.


Jennifer 6 years ago

Know that there are MANY Naet practioners who are not listed on the site. Only those who took a workshop in the past year. That leaves out many who are trained.

Where do you live? Another promising treatment is called AAT, but I don't have first hand experience with it, and I'm not sure if they have treatments for body organs, glands and excreations.

But I hear from people who had great results with other allergens. Just another tool to investigate.

http://www.allergytx.com/

http://www.midwestallergyrelief.com/faq.htm


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Thanks again! Yes, I read that they just started posting the trained docs on NAET, maybe I'll get lucky and find one of them not listed, really interested in trying it for my hormone/sweat/other allergies. I'll have to take a look at the other method too. I'm doing quite well but still having a few minor problems, nothing like before. I've managed to avoid anaphylaxis for almost a year but it sure would be great if I could just be cured completely and not have to keep up with my daily routine of everything to maintain functionality. I have NO willpower, :) I live in Springfield, IL and it's not to up and up on alternative methods of treatment. Looks like St. Louis or Chicago would be the closest but that was just checking their website list. There are several acupuncture/acupressure clinics so maybe luck will be on my side and one of them is trained in the NAET. Thanks so much for the info and links, I will check them out!!!


carrie 6 years ago

I was truly touched by reading this! I have had problems with hives since 2007, I have seen so many doctors and specialists, with no real answers. I have been tested for lupus several times, as they said I had all the symptoms, but the tests has always came back neg. they tell me that it dont really mean that I dont have it, as the tests might not show it. I have told the doctors that about a week to 10 days before my period it gets really bad, I have hives 24/7, all month long, but at times it is unmanagable. They have treated me with 75 mg. of atarx 3 times a day to keep me from looking like an alien and diagnosed me with chronic uticaria, they said its just something that I'm going to have to live with. It has been over 3 years now and I'm still in the same condition that I was then, but my hives are under controll as they say. For me its not under control unless its diagnosed. My hives cover my whole body, face, head, arms, legs, chest, stomach, back...etc. everything except the palms of my hands and the bottom of my feet. It is so uncomfortable and has really effected me mentally, I just want some answers!! If anyone can help, please do!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hi Carrie, Thanks so much for your comment! It does sound like you have APD. Sometimes the hives won't subside completely between your periods because it can take up to 3 weeks for histamine levels to drop and the reactions to subside. Before your histamine ever drops completely your going back into another cycle with your progesterone raising causing increase in flares. Not sure if you finished reading my series on the AIPA/APD (Parts 3&4)I do have a treatment, very effective for most, and it's all natural and organic. Several women, including myself, have had great results with either complete remission of symptoms or significant relief. I have currently been in remission for almost a year. I still have a few health problems just from being autoimmune but NOTHING compared to the multiple organ involvement and seizures from anaphylaxis. As long as I avoid other allergens that I have, especially before my period, I do pretty well, same as the others. I may be able to help but I of course can not guarantee results as each case is very different. Please do contact me further info! Have a great day!!!


veronica(viky) 5 years ago

please,explain to me how to order my products for my breast i saw theres a bid what does this mean!please dont delay thank u


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

HI Viky! Found me I see :) Just click on the one your interested in, you'll want one with the 500mg caps for breasts. Don't worry about the bids, that's the price. They're all buy it now, I don't auction them. I'll send you 5 pages of guidelines/instructions as well. They're just things I've found out along the way that have worked best for me but you will want to modify according to what your wanting. I can help you with that if you like. Thanks for looking me up and have a great day!


Sherri 5 years ago

She-rah,

I have just recently (in the last 3 months) been perplexed by the appearance of hives on my neck around 7-10 days prior to my last 3 periods. The hives seem to almost fully disappear by the time of the next outbreak, and they are painful at their onset (first day), then just itchy for the remaining period of time. They seem to flare up every time I wash my face or shower (around warm water). I have always been prone to acne/breakouts around that same time frame (a week prior to my periods), too. Other than the skin issues, I do not seem to have other symptoms. Does it seem possible that I have some sort of hormone allergy, given the cyclical skin symptoms (though mild)?


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Sherri, Thanks so much for your questions and comments. I would honestly have to say, Yes, that the symptoms you are experiencing seem to be related to an increase in your progesterone causing an allergic reaction. It can take up to 3 weeks for histamine levels to drop back down to normal and completely stop reacting. By that time, our progesterone increases again and we start reacting again about the time they're almost gone. The symptoms of this autoimmune disease are very vast ranging from mild like the hives you're describing to severe and life threatening reactions like the ones that I suffered. Not sure if you finished reading my series on the AIPA/APD but I developed a natural treatment and I've been in remission for a year now. This month marks my 1 year anniversary in remission and avoidance of my anaphylactic reactions. Heat will make the hives worse and they also seem to be the worst in the evening time for most. Splashing your neck in cold water or taking cold showers may help keep the flaring down and reduce itching, Brrrr, lol. I only get about 2 or 3 hives a month now, a few days before my period and that's only if I take a hot bath or shower, as soon as I cool, they disappear. Seems to be more related to my sweat allergy and the combination of my progesterone increasing at the same time. Parts 3 and 4 tell you about my treatment and how I've been able to go into and maintain remission. I hope this helps and please feel free to ask me anything!


AngelaYM profile image

AngelaYM 5 years ago

I'm so glad I came across this site! I've been an allergy sufferer all my life, food, dust etc., but when my hormones kicked in at 11/12 years old they got progressively worse.

I went on birth control when I was 15 years old and when I went off of it at age 20, 2 months later I got INSANE hives. Nothing else had changed in my diet or habitat, I knew deep down it had to be related to hormones/birth control. The hives lasted months (at least 3) and covered my entire body, moving and changing daily. I was put on very strong antihistamines but the hives did not go away until I went BACK on to birth control.

Even when I was on the birth control, the week when I had my period and didn't take the pill each month...the hives came back and then would go away again when my period finished and I took the pills.

Now, six years later I've tried going off the pill again and two months after going off the pill I have these TERRIBLE hives all over my body again. Some days they are on my face, today my lips are completely swollen, along with huge hives on the rest of my body. I'm hesitant to go to any doctors because when this happened 6 years ago all I got were more questions, and no answers, so many tests with no solution. When I told doctors about the connection to the hives and my birth control they laughed and told me that was definitely NOT connected. I've been feeling hopeless, and this is the first bit of information I've come across that has a connection to what I've been experiencing!

I'm located in Toronto, Ontario Canada, and I HAVE to find a doctor who will listen to me! It sounds like it's different from what you have experienced but at least now I know that it is very possible that hormones and allergies are connected and I'm not crazy like my doctors suggested.


Jill 5 years ago

I am 43 and had a total hysterectomy three years ago. I also have interstitial cystitis and had toxemia during my pregnancy. I have been struggling to get my hormones balanced and recently increased my progesterone significantly. I have been suffering with facial swelling especially around the eyes and forehead.Also heart palpitations and slight wheezing. Any thoughts??? thankyou


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello AngelaYM, Thanks so much for your comment! No, your not crazy, most of the docs just don't have a clue regarding the hormone allergy. It's an "orphan disease". Actually, it does sound like you have Autoimmune progesterone dermatitis (the same hormone allergy as me). Sounds crazy, I know but I had to increase my estrogen/ progesterone levels in order to go into remission and stay there. Would like to know what kind of birth control your on??? More estrogen related or progesterone related. In some cases of the APD, there were women that they treated with synthetic estrogen to control the symptoms, my treatment is a natural bioidentical estriol treatment that I developed from a plant found in Thailand (I couldn't have synthetic hormones of any kind). When my hormones increased during pregnancy, my symptoms subsided and I went into remission because my body built up a tolerance to an increase in hormone levels. Would work like that with birth control as well, so it seems that the additional hormones from the birth control, allow you to go into remission and when you go off of the birth control, your symptoms emerge. Seems you may be like me and had the progesterone allergy since puberty but the birth control was controlling your symptoms for the most part by increasing your tolerance. Not sure if you read Parts 3 and 4 of my series but I do have a natural treatment for this condition and have been in remission now from the severe form of the hormone allergy for a little over a year. I hope this helps and please feel free to ask me anything (info@awarenessforaipa.com) Have a great day!


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Jill, Thanks so much for your comment and question! Yes, I have a few ideas and questions as well. Hope you don't mind. Are you on synthetic progesterone like the kind found in birth control??? The synthetic form is known to cause an acquired form of Autoimmune progesterone dermatitis. My guess would be that somehow you've developed an allergy to the progesterone, not born with it like me, but more than likely acquired it from exposure to a synthetic form. You can not use progesterone, especially a synthetic form, if you have the hormone allergy. Are you on any kind of estrogen treatment??? Usually after a hysterectomy, estrogen supplementation(synthetic) is prescribed to prevent hot flashes, osteoporosis, cardiovascular disease, depression... but they have found that the synthetic estrogens are a major cause of female related cancers. That's why I use a beneficial bioidentical natural form of estriol to control the symptoms of my autoimmune progesterone anaphylaxis. I can't have synthetics of any kind and a hysterectomy could have caused more serious problems for me. You sound like you have the more severe form, the AIPA, swelling with organ involvement like cardiac, breathing distress are signs of anaphylaxis. It's not just causing skin manifestations like with the milder form, autoimmune progesterone dermatitis. I highly advise getting off the progesterone, the more exposure to it, the more progressive the hormone allergy becomes. To the point of being life threatening! This is just my opinion, of course, I am not a doctor but am very knowledgeable of the progesterone allergy. You can find out about my treatment in parts 3&4 of this series. The links are above. Please feel free to ask me anything and I'll do whatever I can to help! Have a great day!!!


Lori 5 years ago

I have been put on synthetic progestins and bio-identical progesterone and each time I get so sick. I get a horrible migraine with auras. I then get the neurological symptoms of slurred speech, facial numbness, hand/finger numbness, etc.

I had an ablation and was told my estrogen was low. Due to the ablation, I was told I did not have to take progesterone. I have been on bio-identical estrogen Since July, 2010. Now my estrogen level is too high and my progesterone level is too low.

Has anyone experienced this? I can't find a doctor that is knowledgable in dealing with this... Now I am being told I will get uterine and breast cancer.

Thank you.


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Lori! Thanks so much for your question and comments! Actually the migraine with auras, slurred speech, face/mouth numbness, and numbness in extremities were all things that I used to suffer from every month before my period when my progesterone was rising. I had several CAT scans done to rule out strokes/TIA and found out that my progesterone was causing me to have simple-partial seizures with stroke like symptoms that lasted for up to 7 months at one point. My memory, especially short term, is still effected from repeated seizueres. ER always just told me that I was having panic attacks and never once treated me for anaphylaxis.

The bio identical estrogen, the kind from pharmacies, is still processed and altered from it's original state. More powerful that the natural sources like those found from phytoestrogens. I'm guessing since you said bio identical estrogen that your not on Premarin or Prempro?! Both of those are derived from the estrogen found in female pregnant mares (horses) and are very well known for their risks of causing female related cancers. The forms of estrogens from the pharmacy can cause a condition called estrogen dominance, which is what you seem to be suffering now. No, the docs are absolutely not knowledgeable! The bio identical estrogen I am on is a completely natural, organic, and unprocessed bio identical estriol (the safest and most beneficial estrogen in the body). It increases estrogenic action within the body and at the same time, blocks harmful estrogens from binding to the receptors balancing estrogen dominance. I can not use any kind of progesterone supplement and am doing really well on just the Pueraria Mirifica treatments for my autoimmune progesterone anaphylaxis. Seems to me, with your listed reactions to progesterone, that you also suffer an allergy to progesterone as well. The Pueraria Mirifica controls a majority of my progesterone allergy symptoms without overdosing my body on too much estrogen. I would have to say that my hormones are pretty balanced now and I'm on REALLY high doses of the Pueraria Mirifica treatments to maintain remission. I hope this helps and please feel free to ask me anything!


Rhiannon 5 years ago

Have you ever heard of anyone having sore throats and having sever internal allergies before their periods? If so what did they do


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello! Yes, I have had that repeatedly! I would either get infections like strep/staph in my throat or acid from my stomach spasms was rising up my throat and into my sinuses causing blisters in my throat, puss pockets, blistering of my mouth and lips. I had multiple organ involvement before my periods from anaphylaxis before I was diagnosed and started treatment. If you are able to find a doc that knows about APD/AIPA (progesterone allergy)and they test/diagnose you with it, then they typically offer to do a hysterectomy/oophorectomy (removal of ovaries), lupron injections, prescribe male hormones, or put you on high doses of synthetic estrogen. I could never take any form of synthetic hormones and the other treatment options were not feasible for me either. If you look above before the comments, you'll see items listed on ebay. Those are my natural/organic treatments that I developed out of a plant called Pueraria Mirifica. This plant contains a very potent bioidentical estrogen that I use to control my symptoms and maintain remission. It is not a synthetic estrogen like the prescriptions from the doctor and so far my body is tolerating it very, very well. I've been in remission and able to control severe symptoms for almost a year and 1/2. I hope this helps and please feel free to ask me anything!!!


Nicole L 5 years ago

Oh my! I can't believe I found this and it sounds to me like it's exactly what I have been dealing with for years. I have always thought I had acne because these rash-like symptoms never really go away. I have been to several dermatologists and have tried treating it like allergies or acne with no success.

I noticed when I became pregnant with my first child, within a few months, my skin was clearer than it had ever been and it stayed that way until after a stopped nursing her (about a year after giving birth) and once my cycles started up again. Then I became pregnant with my second child and had clear skin again until after I stopped nursing him and starting having periods again. Another symptom for me besides the rashes are migraines. When I was pregnant, however, I had no migraines.

I am in the process of being seen by an endocrinologist and have had blood labs done and have found nothing really "wrong". He started me on progesterone to see if it would help. I have only been on it for about a week now and have noticed a slight difference in the severity of the rashes and migraines. I am also going to look into the natural ways you have discussed to see if it helps me too! Thanks so much for this information! If I can change this, it will change my life!


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Nicole! Have you seen an allergist/immunologist? VERY few doctors are even aware of the progesterone allergies existence. Yes, you sound like I did during pregnancy but what caused my remission was mainly the increase in estrogen. Estrogen only is the hormone that should be used, so I'm a bit concerned that endocrinology put you on progesterone. It could be capable of causing you to build up a resistance in minute amounts and building up but didn't work for me. Typically, the more progesterone you're exposed to the more the autoimmune progesterone dermatitis progresses. That's what happened to me after many years of misdiagnosis. The test for APD/AIPA is very specific and will not show in any other tests at all leading docs to believe there is nothing wrong with you or it's all in your head. My treatment is all natural/organic bioidentical estrogen from Pueraria Mirifica. Not sure if you got to part 4 of my series where I mention my treatment?! I've been in remission from anaphylaxis for 1 1/2 yrs now, woohoo! Please do feel free to ask me anything! Have a great day!!!


GandB 5 years ago

I am so glad to have found out that I am not going crazy. I told my ob/gyn that I think I am allergic to my periods and he just looked at me like I was nuts. He said you cant be allergic to your periods. I have always had irregular periods. They are happening every two weeks now and I was never able to take the pill to control them cause they always made sick with migraines and rapid heartbeats and just made me really horrible in general. I went through this dramatic change like 4 years ago and started having horrible migraines every time I was pmsing. That went on for a year or two and then I started always breaking out in hives a few days or a week before each period. Now my periods are so frequent I break out in hives everyday and have to take antihistamines everynight in order to get through the day. I also started getting dermagraphism. I have had many ultrasounds and blood tests and things have turned out normal. I also always seem to have a sneezing fit right around the time I am about to start too. I am 39 and I think I might be starting to have perimenopausal symptoms. But now I am feeling sometimes like I cant breath. I just moved to another state not to long ago and that symptom didn't seem to start until a few months after I got here. So I dont know if they are related. But it seems to me now that I sometimes have these breathing problems right around my period as well. Did you have this symptom too? I would love to get rid of this or help this situation in anyway. Right now I am taking antihistamines during the day every few hours just to get through the day.


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello GandB, Thanks so much for your comment and questions!!! NO, your not going crazy, although the doctors wish/think we are. Yes, sounds exactly like the APD symptoms and even sounds like your progressing into the more severe form called autoimmune progesterone anaphylaxis or progesterone induced anaphylaxis (AIPA). APD only effects the skin, so they say, but AIPA effects the skin and also causes organ involvement like your breathing distress. Yes, I had the breathing distress as well and still do very mildly sometimes. I've been in remission for 1 1/2 yrs but still have what I call "minor" issues from simply being autoimmune. The tests that they are running will show nothing. APD is not a test that they just do and most docs do not even know if the existence of autoimmune progesterone dermatitis let alone know anything about testing/treating. They all just think were nuts and put us on antidepressants or antianxiety meds in most cases and say that it's all in our heads. My mom told the docs that I was allergic to my periods when I was 17yrs old and they treated her horribly as well. Because of their refusal to listen or even look into the possibility of a hormone allergy, I suffered for 24yrs and my symptoms progressed into life threatening and repeated near fatal reactions. The antihistamines work for only a period of time, if they even work at all, but eventually they become ineffective. My treatment is all natural,organic, and bioidentical estriol that I simultaneously extract/infuse. Not sure if you saw the ebay capsules above, but those are my treatments. In parts 3&4, there is info on how I was tested/diagnosed with the hormone allergy and how I developed my treatments. Please do feel free to contact me via email for questions or further information: loricody1@comcast.net

You can find the links to parts 3&4 above in my hub! I hope this helps and have a great day!


GandB  5 years ago

Thank you so much for the info. I was just so excited to read this information that I wrote before I could read it all. I am just so happy that I am not going crazy and that I am not the only one. I want to try anything that might help. I know that I am going to definitely talk to my new doctor about this as well and hope that she knows what I am talking about. Thanks again.


Missy1098 5 years ago

Oh my gossh! Thank you so much. Im only 14 and I just started getting my periods. The first time it happened they thought it was chicken pox or sun poisoning but hten I got it everytime I start my period, which is actually every 2 1/2 weeks. At the beginning of my period I get very VERY bad hives and my eyes swell up. I didn't know if I was just going crazy or something!


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Missy1098 Thanks so much for your comment! Somehow I missed this one, usually don't take so long to reply...Yes, it does sound like Autoimmune Progesterone Dermatitis. So very glad the information helped. It's VERY difficult finding a doc to test and treat so please do feel free to ask me anything. I will provide as much info as I can. I've also listed doctors (above) that are aware of the disease and will test/diagnose. Hope it helps!!!


Rose 5 years ago

I'm curious if anyone can relate to my story and help me decide if I may have Autoimmune Progesterone Dermatitis as well?

I am now 22 years old, had my first menstrual cycle at 16, and began experiencing hive breakouts at the age of 19. The hives occurred just about 6 months after I moved back to the US (I had lived in Latin America for a few months), and just a few months after I started receiving treatment for bulemia.

I hadn't been having periods for a year or so due to my poor health, and then they starting coming back once I began treatment and was getting more nutrients in my body. At the same time, I started taking birth control pills and anti-depressants as well. The hives began happening at night, but not every single night and I have never found a pattern to this. Perhaps I do get them prior to my period, but my cycles have never been regular so it has been difficult to track.

For the first year I was able to take non-drowsy benadryl each night before bed, and they usually would never appear. However, eventually the Benadryl stopped working and I began seeing an Allergist to find out what was going on. As of now, he has diagnosed me with Autoimmune Uticaria.

In addition to hives, I also feel as though I might have Asthema. My joints are also very sore and tense and I have chronic back pains because of this. I am now very healthly, in great physical shape, and I stretch/exercise every day so I don't think I should be in such pain... I also sometimes will wake up with one really swollen eye/cheek, and sometimes at work I will notice that my hands/fingers are a little puffy. I also experience headaches most days and a few months ago they had developed into migranes. Before discovering Autoimmune Progesterone Dermatitis, I really didn't think that all of these symptoms could be tied together, but perhaps they are?


    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working