I'm Allergic to My Hormones!-Awareness for Progesterone Induced Anaphylaxis-Autoimmune Progesterone Anaphylaxis, Part 2
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 Anaphylaxis
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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
Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
***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
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
8 a.m. to 5 p.m. Mountain time, Monday through Friday
8 a.m. to 5 p.m. Eastern time, Monday through Friday
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
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday
Mayo Clinic in Minnesota
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday
Mayo Clinic in Arizona
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
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!
Other Beneficial Uses of My Treatments
I'm Allergic to My Hormones!- Parts 1 & 4/ My New Website for Awareness of AIPA & APD
- My new Facebook Account for Autoimmune Progesterone Dermatitis & Autoimmune Progesterone Anaphyl
Please feel free to send me a friend request!!!
- Awareness for AIPA | aipa
My new website for awareness of Autoimmune Progesterone Anaphylaxis (AIPA), Progesterone Induced Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD).
- I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis- Autoimmune Progesterone
Part 1: Im writing this hub to motivate others who've suffered similar stories and situations to get help in getting diagnosed, getting proper treatment, and know that there are many things that can be done to...
- I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis, Part 4
Part 4: Ok, time to finish my series. In Part 3 of Im Allergic To My Hormones, my preview of Part 4 stated that Yes, I have found a treatment for my rare autoimmune disease. Im happy to report that...
More Information on Progesterone Induced Anaphylaxis (AIPA), Autoimmune Progesterone Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD)
Histamines Connection to other Autoimmune Diseases
- Explanation of Allergies
Explanation of allergies, autoimmune diseases caused by high histamine levels.
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