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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@internalmeddoc Good to know your research interest lies with this insidious infection, and thanks for participating.
May you and fellow researchers soon recognize that this has the potential to become an epidemic given that there is no reporting requirement as there is for TB and it is spread by the water we drink and the soil we till...far more folks are acquiring NTM's at a far faster pace than inadequate data collection indicates. And many folks have the infection yet don't know it. I was placed on a biologic for my RA with only a negative TB test...my Rheumatologist followed only the decades-old protocol, never updating himself even as he started seeing more patients w/MAC. I urgently suggested he add a CAT or MRI scan of the lungs as a matter of course before putting patients on immune suppressants; his response was to be more worried about the small of amount of radiation involved than the danger of not uncovering MAC prior to exacerbating it w/biologics. Hmmmm.... I'm seeking a new Rheumy...
Start educating your fellow physicians on the danger of this growing infectious disease. And keep the pressure on for more and better research, as new treatments are not forthcoming.
Thanks for your time with us.
Replies to "@internalmeddoc Good to know your research interest lies with this insidious infection, and thanks for participating...."
@internalmeddoc, you must indeed be proud! Would you mind sharing the name of your teaching hospital .. we would certainly recognize it .. " my tenure as an attending at major teaching hospitals for 15 years"? Katherine
The wording is key: "if you've ever had TB" - ex: my mother developed active TB, was treated, but we needed to tell docs about that when discussing her treatment. As for MAC disease being possible cause of RA...WHAT???!!! Very interesting! Might explain (or not) the fact that my RA felt a bit better after a brief round of antibiotics for bronchitis...?
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I agree with all of your assessments. The NTM's (Nontubercular Mycobacteria) formerly called atypical tuberculosis and which include MAC/MAI are indeed a force to be reckoned with and yet like tuberculosis, are often ignored. I realized this during my tenure as an attending at major teaching hospitals for 15 years, and now as a researcher in this area, still do. Regarding your RA, you were so absolutely correct in questioning your Rheumatologist's use of immune suppressants and one cannot but be struck with the fact that the manufacturer's TV ads of such drugs to this day caution "Tell your doctor if you have ever had TB"....which is odd since how many patients are aware that they have TB or MAI/MAC (which is basically fowl tuberculosis)? But the deeper concern is that there are studies on Medline which question as to whether RA itself is not a mycobacterial disease to begin with. Thank you for sharing.