This has been such a journey. I've discovered that many (may most?) of my symptoms are related to allergies and extensive angioedema (it affects many parts of my body and the swelling gets pretty crazy (i.e., more than 10 inches in diameter increase in waist, etc...).
I have always had allergies, took shots in college, and I thought it was better. However, I started having swelling and pain around the same time. The swelling got worse over time. Was constantly gaining weight despite low calorie intake.. started having muscle dysfunction, exercise intolerance, sinus tachycardia, orthostatic hypertension, blurry and double vision, badly irritated eyes, near constant migraines...
I have done many rounds of doctors. What I have recently found out is that
1. I have hashimotos and am now hypothyroid and also vit d deficient. Other nutrients/electrolytes are fine. (Thyroid is being treated)
2. My IgE levels are chronically elevated (but not crazy high.. 150-180 in there).
3. My B & T cells are fluctuating - absolute numbers are sometimes below normal, % are sometimes high (not at the same time).
4. My CD19 is low.
4.5 My response to the vaccination challenge was mediocre, so I got the vaccination twice. The second time, I reacted to it. (Pneumovax)
5. I am reacting to an ever growing list of substances as allergies - including environmentals, plant foods, spices, plant oils, inert ingredients in medications, vaccinations, and meats and meat derivatives. It may be ok one day, and every day thereafter I react.
6. I have angioedema (profuse swelling) in almost all body areas (I have measured 10 inches difference in waist size in one day, lost 16 pounds of water weight in 2 days, etc.). I haven't seen my real self (normal size) in quite some time (years).
7. The angioedema is pushing my eyes out of alignment, causing blurry and double vision
8. The allergies are causing gastrointestinal problems, conjunctivitis (eye inflammation), occasional hives, swelling, anaphylaxis, asthma, and migraines
9. They suspect the pain and muscle dysfunction may largely be due to swelling in the connective tissues
10. I am very slow to recover from illnesses now and they are at least 50% of the time severe (I have chronic bronchitis)
11. Even constantly reducing my dietary variety as I identify new things and changing body products, etc. .... nothing is helping. (I'm mostly eating wheat, potatoes, chicken, & eggs)
12. None of the treatments with multiple allergy meds, prednisone, asthma meds, etc. has helped.
13. Allergist has diagnosed Primary Immune Deficiency and CVID so far.
14. Iron levels dropped suddenly a few times. (142 to 35).
1. Could all of this be related to the CD19 dysfunction or some upstream process?
2. Has anyone been successfully treated? (I'm allergic to Xolair, so that is out. I am getting allergy shots, but dose had to be lowered twice to start) And I can't take prednisone or allergy medications due to allergies to inert ingredients (prednisone didn't work anyway).
3. Has anyone discovered some other relationship or cause for this?
4. Has anyone had the same thing and can offer what the future may look like?
5. Has anyone had a successful method for identifying delayed reactions?
6. Are delayed reactions happening in the intestines? I have some right away in the mouth, chest or eyes, some a bit later with stomach irritation, and some where I get the symptoms much later (3 or so). Some symptoms also come on very slowly - over 4-7 hours. Are these caused by different types of things? Any knowledge around this?
Thanks for any help you can provide. I'm trying hard to get a handle on this.