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.

Marji, I'm so glad that the TB meds are helping so much. I think so much of what happens with our bodies is still a mystery and I do agree with you that for those of us with immune system issues that previous infections and viruses can have a lasting effect on us. For me, I know I was never the same after I had mono and it appears that mono and strep throat were what triggered the arthritis that my son has.

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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

Thanks, Hippi and Judy! I had two years of strep and staph in the throat as a child until I got my tonsils out. Never got mono but that is supposed to be very bad too, they keep testing me for it. Hippi, I hope your son is doing better on the new tx. Its so great you got him on it, you are a good mom. Judy, kidney failure...remission...I'm so so sorry for all that. I can't imagine how bad that must have been. I have just a tiny ut problem and its maddening, I can't imagine. I know it can be bad because I had an uncle who was a quad and in the end had lots of kidney problems and bad headaches and was very uncomfortable even not feeling anything from the neck down. I wish you the best and congrats again on the book and the great review!

On a side note, I got my blood drawn today and the nurse used to work in the jail. She has a sister who is also a nurse who has had TB. She told me that at the jail there was a woman with constant gi problems, nothing life-threatening, but Crohn's like, gastritis like, and they tested her over and over a bunch of times and finally after ages they figured out she had TB in her gi tract, that her "latent" TB had spread even though she never had it in her lungs, it went into her GI tract. The nurse said that the medical community is very very uneducated about TB, that we feel "it has been dealt with, its not a problem" to the point they can't even diagnose it and have only begun to start doing more research. Frighteningly, she said that polio is the other disease making a comeback and not well understood. Polio! That is very scary. She said that some docs find it easier to just treat people as having autoimmune problems without looking to see if there might be some kind of underlying infection causing problems and that TB can spread in the body even if you never had "active" TB that you knew of. Uck, it makes me feel the world and humans are so germy!

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Love, Marji

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)

Hi Marji,

I am so pleased you are doing better. Glad you are back on the plaquenil. My experience with Rheumie at Mayo not the best when it comes to autoimmune as they blame fibro on all when labs are normal, man they made me so sick with lupus and they got my records and finally said uh, yes you have lupus. Duh! I am back to where I was when I applied for disability. But on a brighter note I am so glad me and you are doing this together.

We have both gone through hiding in the dark literally and Mayo together we need to just sit down and just chat about it!! I am pleased you are getting the answers you deserve and I hope you keep improving. You deserve the world.

I did have the Uva/Uvb patch testing done and took pictures of it. 4 hours later I was pink after the UVA test and the test is read after 24 hours with uva, 48 with uvb. Both were fire pink and itchy. I am waiting for the Dermie to get back from vacation and I will fill you in on what she says. Her first report said with the Ro/SSA anti-body and ANA of 10 she is not shocked I am so photosensitive with the history also of Lupus. Now she has records from the Rheumie to back it and we shall see. The main Mayo doc said it was all psychological but he also missed a fibroid cyst in my belly the size of a canteloupe when I kept telling him I had belly pain and missed 2 bulging discs L4 & L5 when I told him I had back pain. I filed a complaint against him. This will add fuel to the fire when I finish the official complaint as the board is aware of his gross negligance.

Keep me posted.
Leta

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sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,

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

Hi Margi,

I forgot to ask you what antibiotic they have you on for the TB? If it is that strong along with the prednisone it could really make you super sunsensitive.

I have found Neutrogena spf85 with helio and sun protective clothing to be the best. also sunglasses that wrap all the way around my eyes that are uva/uvb 100% work, champion makes some they sell at target that are black tint for $20 and they work great.

Leta

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sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,

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