Welcome to our forum, although I'm sorry for the circumstances that bring you here! You're too young to be dealing with so many diseases!
I had an explosion of diagnoses in 2008 and 2009....it seemed like every time I turned around I had something new. Some awful autoimmune disease. Then 6 months ago I was diagnosed with Lyme disease, and some of the coinfections like Babesiosis, Ehrlichiosis, and Bartonella. Now it all makes sense, because Lyme disease can both mimic AND trigger AI diseases.
You have so
many diagnoses, and some are AI diseases....have you ever been tested for Lyme disease? I'm not a doctor, so can neither advise you or diagnose you of course, this is just a thought....most people don't realize that Lyme is becoming epidemic in the United States, and they think you only catch it if you go camping or something.
The reason I ask about
Lyme testing is that I had just run across a comment about
a Lyme connection to secondary porphyria on another board (www.cpnhelp.org/lyme_poryphia_mopping
), here is part of the comment:"Lyme is very toxic to the liver and can damage the ability of the liver to process chemicals. Therefore, that can result in a secondary porphryia (as my doctor explained to me).
Patients with MCS - multiple chemical senstivities, he felt, all had problems with the C P-450 detox phase and would have variations of porphyria as a result.
Some attention was given to secondary porphyria about 10 years ago in the CFS patient population due to problems with the C P-450 pathway.
Therefore, IMO, it's in everyone's best interest to be aware of this and take precautions.
For some, it is hereditary but can go undiagnosed. I was dx with two types of chronic porphyria in '95 - before being dx with lyme and 2 other tick infectionsi in '97. then Cpn and HHV-6 two months ago."
In any case, this is sheer speculation on my part, so please take it or leave it as you wish.....you and your family are in my thoughts and prayers, Dawn!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAPautoimmunediseasesgfliving.blogspot.com