Rheumie visit and TB

Well, I saw my rheumie today and he was very happy with my improvement and that I'm getting TB therapy.  Since I have felt so much better and had less brain fog and much more energy on isoniazid, I asked him whether maybe it was TB, especially in the spine, which Mayo was going to do some surgery on until I improved so drastically and quickly. He just smiled and said to ask that doctor.  I asked him whether some other infection or condition would improve on the same medicine for TB, and he said not likely at all, that isoniazid pretty much targets TB, so if I'm doing better, the supposedly "latent" TB infection was probably the problem. He seemed quite pleased with the pretty drastic improvement, and gave me something for my throat that is now acting up--nystatin--and it is helping immediately. Its like every part that I had trouble with, every placeI had pains or problems, now hurts, then feels tons better, like healed up, instead of just slightly hurting.  My gi is much better and my kidneys and my back and posture is very noticeably better. I hope they do another xray to see if there is any spinal improvement.

Moral of the story is: I think that docs previously have underestimated the damage that may be done to our bodies having to keep viruses and bacterial infections--like epstein-barr, lyme, TB, strep, and such in check constantly, and hopefully for some of us, treating these things we test positive for will help our autoimmunity. And if theTB tx doesn't fix my autoimmunity eventually, at least I won't have to worry about TB coming back when I'm on steroids!

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Love, Marji

_{--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}

Marj,
I am very thankful that you are so much better! What a relief!

Hippi,
I had a horrible case of strept the first time I went into kidney failure and it caused me to come out of remission in '04. It is sooo dangerous!

Judy

Marji, I am so happy to hear the meds are working! I pray you feel better and better each day! TB in the GI tract??? Now that is scary, there are so many people out there that have problems and doctors are to eager to blame it on IBS when it's something else causing the problem. Take care

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Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)

Thanks Stacie and Leta. The drugs are kind of doing a mental thing now, I think its my liver, a little bit of enceiphalopathy, but it could be TB in the brain or the meds making me goofy. The darn stuff spreads all through your body the minute you get exposed to it and nests in any lesions you have. Since I was stabbed in the head, there's that big lesion there, despite the tiny lesions we all probably have. Then, supposed our immune systems neutralize it , walling it up and encapsulating it. They used to believe that when you first got exposed, it just went to one little spot or so in your lungs and was killed immediately, but they know now that it not true, though most docs still work off the old thinking.

Leta, my sun sensitivity is beyond unbearable now. Incandescant lights bother me, as do certain spectrums of fluorescents. Most of my inside light comes from my fish tanks and I put special bulbs that are more purple in those which helps and is more soothing. I think the thing with the incandescents is my eyes being really sensitive. When I set outside to get in the car, I turn pink to red immediately, flush right away. It's awful. I look like I have laundry soap rash or something. I get sick and have to take the nausea stuff. And I get that awful, too much sun feeling. From less than a minute. I guess like three meds I'm on cause this sensitiveity, then of course my crappy liver I think is causing some kind of mild porphyria type problem, and then the autoimmune. I have to wait to leave my house in the evening if I can or early morning. I love rainy days.

I'm sorry to hear yours is getting worse and that they are bouncing you around on diagnosis. Yeah, duh, fibro. I asked them if my pigment problems were caused by fibro, and my spinal degeneration. What bozos. Mayo has been good for me for the most part because I came through liver transplant, and the docs there have to be really really good and they do my referrals. I feel like I have an abscess or tumor like you describe. I saw two things, one that looked like a psoas abscess which is typical for strep, staph, and TB infection, and one that looked like a large mass in my belly.

I'm worried about granulomatous stuff now, even if the TB clears, my immune stuff looks a little like autoimmune vasculitis, kidney disease, or granulomatous type disease. Hopefully, it is all TB.

I would like to chat sometime. I think my email is in my profile, if not, I can change it. I'm like a mole now. I don't know if you've read Sartre's Nausea, but he must have had sun sensitivity. It is so comforting and funny to read him complain about the daylight and the light and all. It's funny to read it from this perspective.

I hope you both are doing better.

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Love, Marji

_{--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}

Thanks, Leta. I'm on Isoniazid but can't take prednisone now because it makes TB come back active, though it sooths it when it is active. I've got so much energy on the isoniazid, I don't need prednisone. Thanks for the tips on sunglasses and stuff. I'm pretty much holed up in the house with wood blinds. I get light from my fish tanks, which have actinic blue bulbs/lower UV the sort of purple looking glow. O found those bulbs don't bother me. I can't stand incandescent anymore, or regular sunlight or fluorescent. I think the hydrocodone adds to it. Just the whole burden on my liver probably doesn't help, since porphyria is a liver disease. I still can't get anyone to test me, no matter how bad I get. The other problem is that I have no pigment or hyper pigment. I just get way too tan too fast. And red. Now I'm getting this roaming tendonitis in my left shoulder and other joints occasionally. It is extremely painful. I don't know what it is from, but they said it won't go away, its part of a disease, not something from strain or anything. But they can't tell me what disease its from. Just part of autoimmunity I guess, Oh, I can still take plaquenil even though its an immunosuppressant because its also bacteriostatix, which is why it works against malaria. Its a really versatile drug I guess.

I hope you feel better. I had some good black wrap around glasses that were actually safety glasses but really comfortable and looked like sunglasses. They have them at lowes for 7 bucks and I want to get another pair. Target is next door. Thanks and take care.

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Love, Marji

_{--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}