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curedmaybe
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Posted: Tue Jul 15th, 2008 07:15 |
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Hi-
Mycobacterium is TB, right?
I've been reading about the Marshall Protocol and I'm desperate for anything that makes sense that might explain why I suddenly became very ill in 1993 with hypo/hyperpigment (dx polyendo dys.), sudden kyphosis, high ANA, and active TB. I was told the TB was not the problem, not treated as my liver funtion was bad. I'm not in end-stage-liver-disease yet, but as bad as I can be with NASH before getting there. Though I have constant high ANA speckled and p-ANCA, I have only extremely low levels of the autoantibodies for AI diseases, not high enough to be positive. There is no family hx of AI disease, but liver disease and diabetes. Have had right and left subman. glands/lymph nodes removed due to sudden swelling, benign hyperplasia. hystero due to endometriosis/pco. Never had these problems prior to 1993 (onset).
My mayo endo mentioned trying treatment for the TB a few weeks ago, probably because my adrenals are getting bad. My kidneys are now a problem too. Mayo infectious disease put me on it, simple 300mg for latent TB. He denied it could be causing my problems, though TB seems to appear as a common cause in every medical article I read.
So far, I have responded positively to Isonaizid 300mg a day with slight liver symptoms--yellow eyes after taking it in the evening that clear by morning.
I believe I have extrapulmonary TB, I think it spread and caused the pigment changes and endo problems in 1993, though I was first infected in 1987.
Is there such a thing as a latent TB infection? Doesn't it put my immune system under severe stress to fight it all the time? Can it cause problems being latent during times when my immune system is weak, but not enough that the docs might see it? I was asymptomatic from a pulmonary standpoint when I had it in my lungs.
Also, I was put on interferon alpha for suspected Hep C that now they think was misdx, while I had active TB. Could that have made it spread? I got very very ill and ended up losing my repro organs.
Will MP work on those conditions that arise from elevated interferon alpha as well as gamma? Do tnf immunosuppressants thwart things? I can't take methotrexate. I think an AI dx is perhaps uncalled for in my case due to lack of family hx, autoantibodies, and mode of onset.
Any info would really be appreciated. I worry that many people may be like me, untested for TB or having tested positive, but not found to be active, and untreated, then later developing lupus like problems, spinal and endo problems and receiving steroids and immunosuppressants that might cause the disease to get worse, and they may be spreading it.
Is this paranoia? Neither my endo or rheumie asked me about TB giving steroids/immunosuppressants. Mayo caught it, my liver doc from India and his partner based on pigment, then endo. Very excellent docs.
Thanks for any help you can give.
Marji
I am hoping the Dr will be open to better treatment for my TB (I am not being appropriately treated for the scope of my infection) and later consider me as a candidate for MP. I feel that I have two bad infections, one TB and another unknown. Seeing me going through the TB therapy might help them better assess what I need later.
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Marji 1987+TB,active93/polyendo./sjogrens/+HCV anti,-PCR/NASH/diabetes/hypo/hyperpig./sun sens./COPD/endomet./PCO/hystero/lymph/sialend.
INH,Plaquenil,Metformin,synthroid,HCTZ,HRT,prns
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
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Posted: Thu Jul 17th, 2008 21:25 |
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Marji,
If your goal is to discover what is making you sick and you want to get well, the best place to start is the required reading, where many questions can be answered.
Is the Marshall Protocol an Applicable Treatment for my Disease?
Meg has stated: "...one cannot be on the MP while taking the mandated drugs to treat tuberculosis. This can take several years."
Using the alphabetical FAQ for a library index of sorts is the quickest way to find topics that can help answer your questions, however. Use a Google site: search or the search tool on the http://www.marshallprotocol.com website too.
See highlighted "tuberculosis" in links below. First link has excerpt in quote box as an example of how to find highlighted detail:
NBC Nightly News Promotes Vit D again see Dr Marshall's Post on why lower 25D appears, citing tuberculosis
Davies PD, Brown RC, Woodhead JS: Serum concentrations of vitamin D metabolites in untreated tuberculosis. Thorax. 1985 Mar;40(3):187-90.
http://tinyurl.com/37mj97
That paper was published in 1985, incidentally. This phenomena is not exactly new, just ignored...
My upcoming paper also cites a number of studies from the 1980s which examined regulation of 25-D and 1,25-D in the female endometrium.
We were all obviously all doing a lot of good work back then 
http://autoimmunityresearch.org/transcripts/Keogh_Ovulation_Induction.pdf
http://autoimmunityresearch.org/transcripts/Keogh_Pulsatile_GnRH.pdf
Vitamin D discovery outpaces FDA decision making
BCG vaccine as treatment for type I diabetes
You might use "TB" for a search as well.
Best to you Marji--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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curedmaybe
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Posted: Sat Aug 30th, 2008 08:52 |
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Hi--
Right now I am extremely photosensitive and live in the dark with special spectrun lights on my fishtanks as lighting. Presenting with mild active pulmonary TB/hyper/hypopigmentation/elevated ANA and inflammatory markers, I was told I was dying of HCV, despite inconc RIBA/neg liver bx/no PCR available at the time, and was given alpha interferon, which totally mademe sick. I became horribly sick feeling like worms were tearing apart my whole body, my hair all fell out, I bled out, I was very ill on it. No one considered TB. After interferon, I was no longer a candidate for INH tx for TB because my pulmonary TB had disappeared without tx on the interferon, though it was like killing gnats with a sledge hammer. I did feel that whatever disease I had was becoming worse and spreading, attacking my nervous system with the worst RLS type feeling all over to the point that I nearly had to be put in restraints.
Years later, as I was supposed to be "well" and all my problems go away as suddenly as they appeared, I got nothing but worse. I always felt "sick" and like I was still on interferon, which is an awful feelng. I was dx with fibro, cfs, chronic fatigue and no testing was done at all. I was given antidepressants and told everything was in my head, despite my rapidly worsening pigment changes and other physical symptoms.
I lost my repro organs to PCO and endometriosis after interferon or disease during that time wrecked them, and have diverticulosis/IBS, diffuse atrophy of the brain, thoracic kyphosis and obvious polyglandular dysfunction and four neck surgeries, two for degeeration, two for lymph/ salivary glands. I had pneumonia, asthma, hypoxia, atrophy of the heart and tendonitis than comes and goes. And finally ut andkidney problems and failing adrenals finally tested. all this when I should be WELL.
I don't believe there is such a thing as latent TB. Even with several problems indicative of extrapulmonary tb, I cannot get a dx and treatment for it and now that I'm improving so dramatically, they still deny any extrapulmonary disease and plan to keep me on possibly inadequate treatment. They have told me that if I had extrapulmonary tB I would be dead or have granulomatous masses, which is not always true, and of course,you haveto look for them and be used to looking for TB.
At any rate, I was in a walker, I can now stand straight, walk on my own, even run some. My pain has diminished by 75 pct and my energy level and mental ability is returning and is tremendously better. I have a feeling of well being. My kidney problems and bladder healed first, though I endured horrible pain on my right side waist level for about a month or so, but when the pain finally resided, the area felt really good and finally healed and completely painless, not like the dull ache of before. And my gi pain and gi tract is finally normal for the first time in fifteen years.
I can't wait to see new xrays to see if there is new bone growth in my degenerated areas. My skin pigmentation has not normalized, I hold faint hope for that, though I understand it is probably unlikely to get better.
I know that what Dr. Marshall talks about is true. I became suddenly, very sick, when previously healthy. I spiraled downward despite all typical treatments and with much negative testing. While TB is a major major culprit in my disease, I have also battled several bad staph and strep throat infections for years, being givein the wrong antibiotics as a child, had pneumonia three times in the first year of life before I had gotten TB, and had blood poisoining from a six inch deep wound to my temple that was never properly treated and still hurts over 20 years later. I have had pockets of infection cleaned out of my neck that don't respond to antibiotics.
When I complete my therapy, I hope to work with a doctor to follow the Marshall protocol. I've been told now that I was given anti-TB treatment not because they felt I had any active disease (and they were definitely wrong and ignorant on that front) but because they feel I need steroids every day for the rest of my life.
No one in my family has these problems. And interferon alpha didn't help matters. I don't want to be on steroids for the rest of my life, just letting whatever is still wrong with me fester and get worse, I want to be well again. I have had some of that on Isoniazid and even though I'm angry I didn't get a complete enough treatment and fear the TB will become resistant, I hope that I can get better through MP. I'm sick of being told I have autoimmune disease. there is no such thing. I want what is destroying my immune system to be killed. I have had "latent" TB overburden my burned out by alpha interferon immune system. My mom has hardly any immune system left.
I hope that MP will work for me when it is time and I just wanted to let people know that you need to get these infections and problems underlying the autoimmunity taken care of. You can feel better and do better and be healthier. And if you have TB, get it taken care of. Its a luxury to be able to undergo treatment for a disease a third of the world is estimated to have.
Thanks for your good research and your common sense and constant questioning. I hear so many friends with AI disease being put on large doses of vit. D and steroids and they just keep getting worse. I try so hard to get them to come to the site and just read and have an open mind, but they are afraid. What could be worse than what we are facing with traditional treatment?
Thanks for the great forum and all the good work you do. BTW, I have severe NASH and can't tolerate most meds but my liver function has actually IMPROVED with the TB treatment with isoniazid, to everyone's surprise. (yet I still don't have Extrapulmonary TB?!?!)
Marji
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Marji 1987+TB,active93/polyendo./sjogrens/+HCV anti,-PCR/NASH/diabetes/hypo/hyperpig./sun sens./COPD/endomet./PCO/hystero/lymph/sialend.
INH,Plaquenil,Metformin,synthroid,HCTZ,HRT,prns
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Dr Trevor Marshall
Research Team
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Posted: Sat Aug 30th, 2008 10:16 |
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but my liver function has actually IMPROVED with the TB treatment with isoniazid, to everyone's surprise
No surprise here. Rifampin is actually a PXR receptor agonist (I discuss this in my Bioessay) since it induces expression of (eg) CYP27A1, while Isoniazid inhibits enzyme CYP2C9, and enhances expression of CYP2E1. This enzyme (CYP2E1) is helpful to the liver in handling Reactive Oxygen Species, inter alia...
Thus it is to be expected that your liver 'function' will change
Isn't real science wonderful... What would we do without the Genome...
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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 31st, 2008 07:17 |
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You might like to review the things I say about TB in the Bioessay
http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
I didn't lay it on too thick, as Ithis paper was dealing with chronic disease, and not acute disease, but the scientific link between TB and Th1 disease is quite clear.
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curedmaybe
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Posted: Sun Aug 31st, 2008 07:58 |
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Thank you so much Dr. Marshall. I read in your bio that you were very successful in IT and I was an Oracle DBA and UNIX system admin and sys architect before I became disabled from this mystery autoimmune junk. Anyway, I worked for big automotive companies and we could not say, as so many doctors do, "I just don't know," but had to work logically to find an answer. So many docs seem to lack the logic to problem solve. I know the human body is much more difficult than an RS6000 or a disk array. I just wish I saw more docs with the tenacity that IT professionals have to have to be successful. I was trained we could never say something was impossible. Thanks for the tenacity of all of you and I will read the papers on TB. I'm just so surprised that I was misled for so long about the TB. I had requested spinal taps, biopsies of cervical calcified lymph nodes (which they merely threw away because they were calcified) and other tests over the years to rule out TB, but I was treated like a kook. Not being a doc is was hard to argue that TB doesn't present as granulomatous lesions in the submandibulars, but in the lymphocytic infiltrates they failed to culture. Most docs dont' even know tests for AFB are not even included in standard bx workups and cultures, I found that out.
Thanks so much and hopefully the TB will get cleared out and MP can take care of the rest. It was painful getting better, but it was so worth it. Real science is truly wonderful. Thanks for the articles and the replies. I am very honored as you must be busy. Thanks again.
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Marji 1987+TB,active93/polyendo./sjogrens/+HCV anti,-PCR/NASH/diabetes/hypo/hyperpig./sun sens./COPD/endomet./PCO/hystero/lymph/sialend.
INH,Plaquenil,Metformin,synthroid,HCTZ,HRT,prns
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curedmaybe
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Posted: Sun Aug 31st, 2008 08:54 |
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Davies PD, Brown RC, Woodhead JS: Serum concentrations of vitamin D metabolites in untreated tuberculosis. Thorax. 1985 Mar;40(3):187-90.
http://tinyurl.com/37mj97
What I found from my own personal experience is that I go through months of extreme photosensitivity during which I tend to avoid dairy products, just not wanting them. I don't take a multivitamin, so food is my only source of vitamins.
When the TB or whatever is the worst, the less sunlight I want to be exposed to and exposure results in the typical almost pophyric type symptoms of pimples in the temples, overgrown eyebrows to the sides of my head, nausea and vomiting and extreme joint pain, along with extreme skin burning or hyperpigmentation. I test negative for porphyria, though my liver might give me mild symptoms I suspect, or some other disease process.
Our bodies tell us to avoid the sun, incandescent lights, and dairy. It can be absolutely intolerable. If we have low vitamin D, I feel it is an attempt to on our part to control a disease mechanism and alleviate bad symptoms. vitamin D becomes toxic to us. I spent an unfortunate hour out on a gray day and am having horrible joint pain. We regulate the vitamin D by choice to improve the way we feel. I have very thick bones and teeth and any problems I've had are more related to hypoxia than a lack of calcium and vitamin D and possibly estrogen or other post menopausal hormones due to undx pco and sluggish endo and ovaries due to attacks from disease. I think docs need to look into that, and why we self regulate to avoid vitamin D. I believe it is more from natural patient avoidance than disease, though we might not even notice we are doing it.
Marji
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Marji 1987+TB,active93/polyendo./sjogrens/+HCV anti,-PCR/NASH/diabetes/hypo/hyperpig./sun sens./COPD/endomet./PCO/hystero/lymph/sialend.
INH,Plaquenil,Metformin,synthroid,HCTZ,HRT,prns
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 1st, 2008 09:45 |
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TB is a reportable disease, and its treatment is covered by World Health Organization dictates. When your TB therapy is done, then you are welcome to discuss where to go from there. Meanwhile, there is no further help we can supply, as we have already directed you to the FAQs and other scientific resources.
Good luck, and we look forward to 'meeting' again when you have completed your TB therapy.
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