So so good to hear from you! Yeah, I'm sticking with my rheumie and even the liver transplant guys are happy with that. When the left ankle swelledup, it is the one with the worst vitiligo hyperpigment and lump, and the left side of my heart had some atrophy that my recent cardiologist could not find, though I have an irregular heart beat on the left side, off the plaquenil, my leg very nearly turned blue when it swelled and it was cold. Anyway. I went back on plaquenil and the heart and leg got better. So there you go. Guess I'm stuck taking it.
Anyway, the issue is that i'm being treated for latent TB, though I strongly feel I have extrapulmonary TB and I don't think Mayo is doing the greatest job treating it, they are supposed to be giving me at least two drugs because the stuff is so disease resistant. I know they are concerned whether my liver can handle the Isoniazid because many people with liver disease have become sick or died. Still, they need to knock this twenty year old infection out for good. TB may be the whole cause of my illness! Mayo hepatologists, endocrinologists and my rheumie all feel that some kind of infection caused my sudden polyendocrine and spinal and liver problems. I had active TB at the time, but they thought it was from Hep C, and I'm false positive for HepC and had a normal bx, so that disease wasn't the right one. I have standard problems, like thoracic kyphosis and chronic cervical lymphadenopathy and pigment problems.
So I'm feeling so so so much better with much more energy and feeling better and believe that for me antibiotics are going to help me get back to a much better place!
How are things with you? I asked Mayo docs about porphyria and my rheumie, but they don't want to test for that. I suppose with my fatty liver, I may have some porphyria and they expect it, maybe not, I don't Know. Maybe part of it is that i'm already on plaquenil so I'm being treated.
Do you think my reaction to stopping plaquentil could be indicative of porphyria? I can still ask them more about it. They are pretty sure I got an infection or had an old infection that caused my illness, and I think they just don't want to complicate things until that issue is taken care of and they can see how much better I get.
I have missed talking with you. How are you? Are you at Mayo JAX (if you don't mind)? Have you seen any liver guys? the ones through the transplant center are the best, but you have to fill out a form to see them. Have you read anything by the Marshall protocol website regarding your vitamin D deficiency? The have a bunch of stuff about that and a lot of info about special lighting and those NO sunglasses.
I would love to hear about your journey to Mayo and the results. The rheumie barely wanted to admit I had AI disease but had to based on labs and tests. I thought the endos weren't so great because they wouldn't give me cortisone for my adrenal insufficiency (or pred, really it's my pituitary right now) because I have latent TB. After seeing my Addisonian hyperpigmentation they asked me about why I never got treated for TB and helped me get to an infectious disease person to be treated. I hope it's strong enough. When I finish, I'm going to look into some of the research where they use antibiotics because I have had so much trouble clearing infections and see what they think.
Take care and I hope we can chat! Did they support your diagnosese? Did they look for underlying causes? For me, its easier, because one day, I just became very ill and my pigment got all messed up. I have some genentic stuff--liver, diabetes.
Well, I hope you write back!
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn