Rare autoimmune disease?
Been to Northwestern and contacted Mayo. Kinda a last resort anybody have any info or know anyone with this?
For nine months I ‘ve had :
Chronic hives
Angioedema
Idiopathic Anaphylactic Shock
currently on Cyclosporine, which lowers my immune system but leaves me vunerable to all my kids colds, flu etc. would love suggestions on this part as well.
No known allergies before nine months ago, I was perfectly healthy thirty something yr old adult. This is considered Autoimmune. I’ve already logged all of my food intake for months, cleaning supplies, soaps, perfumes. There is just no rhyme or reason to when it will happen or not. Now i’m up to 2 shots of .3mg epipens to open my airways and get me breathing again. Any ideas?
Two weeks before this all started i had pancreatitis…
I will check if i was tested for lyme disease. They have tested me for everything else under the stars. I’ve also have mir and many ct scans.
Thanks for the input.
I had a biopsy and tested negative for vaculitis.
I was also tested for lyme disease.
Try visiting vasculitisfoundaton.org.You will get good advise.
I can’t imagine knowing for sure without being a doctor. But since they don’t know, I’ll say this: Whenever crazy things go on unexplained, I’m always thinking ‘have you had a lyme disease test?’. I’ve had lyme disease twice, undetected once for about 5 years. Well, with the second bite, I started developing all kinds of problems. One was an allergy/sensitivity to salicylates, which is found in aspirin, but also in lots of natural and artificial foods. I was having problems with hives, rashes, facial swelling, but not quite anaphylactic shock. I had been taking a medication with yellow dye, which I believe, really set my system off, and it was all down hill from there. There is no real predictability with this type of sensitivity, because it’s in a mish-mosh of food items – tomatoes, cucumbers, apples, peaches, plums, oranges, berries, raisins, mint, artificial colors and flavors, some preservatives (sodium benzoate), and so many, many more. They can also be found in non-food items, to make matters more trying.
I only mention this just as a thought for you to try to get to the bottom of things. There is so much controversy about lyme disease, and it doesn’t always show on a test, which is another problem. The salicylate sensitivity is also very rare. Think back to if you remember seeing any rashes about nine months ago, or initial flu-like symptoms. I never had symptoms the first time, but the second bite gave me flu-like symptoms for about a week. Think about it… I wish you the best of luck!
Wow, you are really going through it. I feel for you (and your family). There is a blood testing company that I have found especially helpful for difficult to diagnose (or cure) issues. Their web site is. This company has great integrity and you’ll be able to see some testimonies that are amazing. They will prefer that you take one specific brand of supplements (if you choose to take any) but they do not sell them. They have found that people using this brand get the kinds of results they expect (in fact the owner has used them for many years). If you decide to have this blood testing, contact me and I can share with you how to get a discount (although there is no money in it for me) just can help you. Best of luck in your quest. Don’t give up.