I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis- Autoimmune Progesterone Anaphylaxis, Part 1
My Story- Getting Autoimmunity Diagnosed
I’m 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 help yourself. Awareness for yourself, your doctors, and others is key to living with autoimmunity. First of all, doctors don’t know it all, they are not God, but most sure do act like it or they blame the patient on having some kind of mental disorder if they can’t find the cause of certain symptoms through testing. If it doesn’t show in tests then there is obviously nothing wrong with you and you’re a hypochondriac, Right? WRONG! I personally feel that a majority of medical doctors, at least most of the ones I’ve seen, have a serious "God Complex" and are all about pill pushing for money from the pharmaceutical companies.
Make an appointment for a swollen throat and leave the doctor’s office with 15 different pills for depression, anxiety, and a sinus infection. That’s my story anyway. First tip, never cry at the doctors office, they immediately think your crazy, you can’t handle life, mark your medical records in red with anxiety/depression disorder, and then proceed to try to pawn you off to a mental health facility. When that’s in your file, no doctor will listen to you, they just think your medical problems are all in your head.
I have suffered with a rare, unusual, and life threatening autoimmune disease since the age of 10. My parents made several appointments for hives, swelling, recurrent unusual infections, and female problems starting at the onset of puberty. The doctors found nothing through tests except the usual hayfever and a few food allergies. I never did develop normal breasts or had a normal menstrual cycle which doctors blamed on me being so underweight all of the time. Unfortunately, due to the misdiagnosis and rarity of this particular kind of autoimmune disease, it has taken 24 years to get a solid diagnosis and positive tests to confirm and treat my condition.
I’ve seen 16 specialists in the last 3 years with life threatening symptoms, one specialist for just about every organ in my body. I started with more minor symptoms as a child and began having serious symptoms about 3 years ago, when the doctors prescribed me a new drug to quit smoking. Since the first symptoms began, doctors and others (including friends and family) have accused me of having a mental disorder, being a hypochondriac, using intravenous drugs, and/or having an underlying psychosomatic condition. At one point, I even began to believe they were right about the mental disorder and called mental health on myself. After speaking to one of their nurses on more than a few occasions, it was agreed upon that I genuinely had an immune system disorder of some kind that desperately needed to be diagnosed.
Information and Awareness for Autoimmune Diseases
Sometimes Smoking has more Benefits than Risks
My previous doctor repeatedly told me that all of my medical problems were caused by smoking and recommended trying to quit using the new "miracle drug". Quitting smoking seemed like the obvious next step to help put an end to my constant unusual infections and allergies. The prescription the doctor gave me for this (Chantix) was the one that finally caused enough damage to make my autoimmune disease visible to the doctors and life threatening. By visible I mean, collapsing, having seizures, cardiac complications, severe breathing distress, vomiting blood, injections and drugs for severe pain, and being hooked up to monitors in the emergency room and at home on many occasions. Quitting smoking at this particular time was NOT the best option for me.
Smoking suppresses the immune system and that’s exactly what needs to be done in someone who is autoimmune. My own form of self medication I suppose, when I could find nothing else to help ease my disabling symptoms. Not smoking caused my immune system to attack my body even more but the prescription the doctor gave me to quit caused liver disease, a seizure disorder, and seriously exasperated my autoimmune disease. Now, I was dealing with a whole mess of already complex symptoms and also began having severe reactions to almost all prescription drugs, many foods/drinks, and even skin care products. A brief list of my symptoms and conditions at this point were:
*Gastroparesis- causing intense stomach pain, vomiting, continued weight loss, inability to eat solid food, triggered seizures
*Seizures- disorder caused by prescription drug used to quit smoking, and severe reactions to various things
*Severe burning muscles and joint pain- diagnosed as Fibromyalgia
*Fibrocystic breast disease- precancerous changes in breasts
*Cardiac complications- intense heart palpitations, flutters, high increase in heart rate, arrhythmia, cardiac spasms, chest pain, possible heart attack
*Severe breathing distress- lack of oxygen in blood triggering stroke like episodes, swelling in throat, inflamation in lungs and bronchial tubes, severe congestion causing pneumonia, would repeatedly stop breathing while awake and asleep, asthmatic reactions
*Stomach, intestines, and bladder spasms
*Swelling/inflammation in the organs, sometimes chronic
*Memory loss, vision disturbances, hearing loss, difficulty focusing, lack of concentration, disorientation, feeling of not being real
*Tingling in face, lips, mouth, and extremities
*Very high to very low blood pressure
*Various Increase or decrease in hives and swelling
*Various infections- Bacterial (Staph), Fungal, and Viral
*PTSD- Post traumatic stress disorder
Again, this is the short list and fortunately, I only suffered from all of these all at once on about 15 different occasions. Most symptoms were cyclic and varied with a few here and there, other symptoms are things that I deal with everyday. My heart, lungs and stomach would act up one time and then the next time I would have seizures, severe pain, and infection. It was becoming impossible to find the 1 or 2 sources of all of my medical problems.
Awareness for Autoimmune Diseases
I Can Help Myself Attitude!
I had to develop the mind set of, “I can help myself! I can help myself! I will help myself,” and that’s exactly what I did, even with all of the ridicule and isolation I had been facing from everyone. I spent 3 years putting puzzle pieces together, keeping track of symptoms, when the symptoms occurred, what triggered which symptoms, and kept cross referencing each. To get a diagnosis I had to find a doctor that would listen to me, run test after test, and do everything that I could to get to the bottom of my ongoing medical issues. This required research and more research on autoimmune diseases and a great deal of arguing with doctor after doctor demanding hundreds of tests.
When you walk into several different doctors offices and the first things they want to do is give you an antidepressant or run an HIV test because of your what’s written in your medical records and your complaints, you end up horrified and literally traumatized. Traumatized to the point of causing other disorders like Post Traumatic Stress Disorder (PTSD). The cause of this disorder in me was not only caused by medical specialists repeatedly accusing me of having full blown AIDS and always thinking that I had some deadly disease, but also the continuous horrifying and painful symptoms that I was dealing with on a day to day basis. Along with the “I’m dying and don’t know why!” thoughts racing through my head. My own family and friends even began to doubt me because of the ongoing lack of medical evidence. The saddest and most heartbreaking experience of my life that rendered me completely hopeless on some occasions.
Finding out that NO, I DO NOT HAVE HIV OR AIDS after repeated testing was a tremendous relief but still no answers or medical evidence as to what was wrong with me. I was desperate and scared to death, talking to anyone I could find that may have some answers or knew someone with similar medical problems. Doctors, friends, family, everyone was doubting my mental stability and tired of my constant desperation and burden. These were things I was completely aware of and felt a tremendous amount of guilt leading into severe depression. Still barely maintaining the “ I can help myslef!” attitude, I talked, doctor shopped, and researched to no end and then, FINALLY... continued in Part 2.
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!
I'm Allergic to My Hormones!, Parts 3 & 4 / My New Website for Awareness of APD & AIPA
- 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 on Awareness for Progesterone allergies- Progesterone Induced Anaphylaxis (AIPA), Autoimmune Progesterone Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD).
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