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SeattleChris
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Stopping Therapy for Mycobaterium Avium Infection
#64880 - 05/16/03 02:51 PM
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Within the past month and a half, my partner has become sick. He has consistantly [consisted] tested negative for HIV. He has been diagnosed with a mycobacterium avium infection in his bone marrow. Unfortunately the treatment looks pretty harsh from all of the resources that I can find. It includes a double dose of strong antibiotics for at least 12 month, and some physicians suggest a lifetime, due to the bacteria's high rate of developing resistance to the antibiotics. The only information that I can find online relates to M.Avium and HIV positive persons, or on lower rates of mortality when the drug regiment is combined with HARRT...this all leaves me very dubious, since he has never been on or needed treatment for HIV with HARRT. My question is, do you know of any other resources for persons with non-HIV (since HIV doesn't cause AIDS) related M. Avium infections and effective treatments for them, with the success of discontinuation of antibiotic therapy?
My thought was to have him start the regiment and then have blood work done every three months to check his CD-4 cells and white and red blood cells, since those were the primary way we came to this diagnosis. This combined with lots of probiotics and a well balanced diet excluding lots of sugars (lots of sugars can cause a Candida overgrowth when lots of antibiotics are taken)combined with lots of exercise I think are the best way to treat this...any thoughts(will he eventually be able to get off all medications?)?
We are also strong advocates of naturopathic medicine and have been consistently seeing our ND as well as traditional MD's. I hope that there is something that you can help with regards to other resources out there, or news to the latest research available.
Many many thanks!
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So your partner is HIV negative and recently tested negative? Cause it's unusual to get MAC (particularly such a bad case) if you have a good immune system. How many tcells does he have anyhow?
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HIV doesn't cause AIDS? Are you sure he's not positive and you just don't want to admit it?
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There are other ways people get immunosuppressions, also, many other infections do cause false positives for HIV. If your partner has a history of Non positive results, and is from a low risk group, there is no reason to assume that he is positive. Why have him take a whole host of other drugs if he is going to be on a regiment of antibiotics, the human body can only take so much toxicity before it too is severly affected by the drugs. Anyway, this is not the issue, this person is asking for resources on how to help his partner's condition when the majority of the information online that I can find is for HIV+.
I am sure if you continue to look you will find some information out there. Infectious disease specialist have syposiums and professional organizations and publications that are specific, check out the library... Good luck!!!
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M avium is extremely unusual to get into blood/bone marrow unless your partner is very immunodeficient. His physicians will have looked for HIV and other causes, I assume?
He must have some underlying defect to have got this infection. Does he/she have any other infections?
Usually a course of ethambutol and clarithromycin is used, but maybe rifabutin will be added in. It may depend on the sensitivity tests which take a few weeks to return.
It is premature to think of stopping treatment until the underlying defect is sorted out - if it is HIV then he needs treatment to restore his immune function. Once this has happened and his CD4 count is high enough, doctors may stop his M avium drugs.
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Although your partner's situation sounds unusual, I have to admit I would be suspicious of some kind of immunosuppression going on. He would have had to have been exposed during some other major illness, had a massive exposure to MAI/MAC or something to get to the bone marrow.
Usually MAI/MAC infects mucus linings in the lungs or intestines. Has he traveled to a foreign country that would have increased exposure risk? Many organic foods that are not cooked, have no skin (strawberries for example) can be carriers to intestinal infection. If he has had the infection for a long time, it could be possible that it may have progressed to his bone marrow from another source. The body can hold it in check for extended periods of time before critical infection manifests.
As an HIV/AIDS (I disagree with your conclusion) patient - long term (18+ years) that has had a round of MAI infection, treated successfully with multi-drug regimin for 3 years+ and then being taken off of the antibiotics. This was only because of the restoration of my immune function with successful HAART. If the source of any immuno-compromising process is not found, then your partner may very well have to stay on the medication for many years, may be for life.
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Another point of investigation - remember that MAI/MAC is in the same family as tuberculosis - acid positive bacteria. The treatment is similar to that, with similar outcomes. Compliance is EVERYTHING in treating this to prevent drug resistance. Once multi-drug resistant, the prognosis is poor.
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My question is, do you know of any other resources for persons with non-HIV (since HIV doesn't cause AIDS) related M. Avium infections and effective treatments for them, with the success of discontinuation of antibiotic therapy?Please reach down and pull your head out of your ass, Hope that helps! :)
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