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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.
Replies to "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..."
Absolutely get another opion...for the following reasons: that they gave him TB meds which is a dangerously wrong treatment for NTM's; there is treatment for mycobacterium all of which are slow growing but you must know which strain of the hundreds he has...clearly these folks know little about the infection; he needs proper care from docs who are experts on the disease.
@milagro103, That is sound advice from @imeehaigt.
@milagro103,
Hi. If you can get him to the Mayo, GO! Few doctors really know how to
deal with mycobacterium infections. He needs an excellent INFECTIOUS DISEASE
doctor. Please keep us posted. - Terri M.
Hello @milagro103 - Paula
I don't know about mycobacterium ventiflavum, but there are over 150 subspecies of NTM now.
Here's some info on the disease you ask about.
http://www.wow.com/wiki/Mycobacterium_lentiflavum?s_chn=31&s_pt=aolsem&s_gl=US&s_dto=d&v_t=aolsem
http://www.sciencedirect.com/science/article/pii/S0163445305002549
https://en.wikipedia.org/wiki/Mycobacterium_lentiflavum
thanks. We are the Mayo Clinic right now !
@milagro103 You are in good hands at Mayo, that is where I go.
@milagro103 Eva, does your husband have a primary disease? An underlying one that left him suseptable to mac?
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Hi @milagro103 I suggest you get a 2nd opinion with infectious disease especialist. I was diagnosed with NTM or mycobacterium but my doctor did not request for specie identification I took ethambutol rifampicin and clarithromycin for 18 months. According to my infectious dissease not all NTM ot mycobacterium needs to be treated. I strongly suggest get a 2nd opinion from infectious disease specialist before you undergo treatment.