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@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

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Replies to "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..."

@tdrell, thanks for all of your great insights on health and welfare. You are correct. I m pretty sure I have seen the information on the diagnostic criteria on the national jewish ntm video's. I hope that everyone gets the opportunity to watch and rewatch with family and friends. I have Coventry, CMR, throu my husbands union but the sheet metal worker's local 36 is the payer therefore they are the ones denying payment for medical and pharmaceuticals. I have missouri medicare medical as my secondary. I have recieved three refunds from medicare last year but didn't know how they would be responsible for a refund and not the doctors office. So when I have received a bill, I always wait a few months to see if the insurace companys figure things out on their own. The fourth month I call the doc office first and have them explain charges and billing. Some times its just a coding error. Other times its that they've billed the wrong insurance first. Even if i have told them time after time I will have to call Quest labs every time to tell them to bill my secondary insurance medicare. The medicare usually covers the deductible on my primary Coventry CMR network. Ive watched Michael Moore's movies everyone should see them also, very educational.
Hope you have a great Saturday! Take good care of yourself!
Becky

@katemnGood
to know. Yet one more reason to go to our big fancy institutions!
 

@tdrell Terri,
I have no idea now. I will ask my doc on Tues. All I have ever known is that MAC
looks like TB when it first starts growing. I was quarantined for two weeks;
confined to my house in isolation in case it was TB. For some reason, after only
two weeks, they knew it MAC.
 

Terri, that is exactly what happened with me years ago with my mycobacterium, Kansasaii. My husband had to have a TB test in case I gave it to him. After 2 weeks, they had cultured the bacterium. As I told Katherine earlier, the mycobacterium leaves something in your lungs that resembles TB and if you go to an emergency room for something, and they X-ray your lungs, they think you have TB. Happened to me. Fondly, Mary Jo

@windwalker Why did you have to be isolated for two weeks? Doesn't it take 3 consecutive sputum tests to confirm whether you have TB or not? My TB test result came back pretty quickly. I don't remember exactly how long it took. My impression was about a couple of days after the third sample was submitted. My pulmonary doctor didn't think I had TB from the start because I didn't have any of the typical symptoms of TB. But he needed to see the test results to confirm it. So I knew I didn't have TB in less than a week (about 5 days).

@maryjo2sell, Mary Jo, that is why I carry a print out that explains MAC .. so FEW ER doctors/nurses OR regular ones are really knowledgeable about our MAC .. OR will recognize it when reading an Xray! We DO need to be our own best advocates ... under ALL circumstances unfortunately! Brochure on MAC/MAI can be printed out at : https://www.ntminfo.org/images/media/FAQ/englishpamphlet_ntminfo.pdf
Hugs! Katherine

@chinasmom, Becky, thanks for the helpful tips about working with your physician & insurance regarding billing! I still haven't watched the Micheal Moore movie...one of these days!

~Jen

@ling123,
MAC and TB look alike during the first two weeks of growing it in a petri
dish. From what I was told, the MAC continues to grow, but changes and
that is how they know it is not TB. I was isolated for fear that it was TB
and that is highly contagious. I cannot recall, why a TB skin test wasn't
sufficient to rule it out. MAC is considered TB's first
cousin.
 

@katemn Katherine, what a great idea to keep a printout. I should bring one about cirrhosis to my PCP. 🙁
JK

@maryjo2sell Happened
to me too. I even got quarantined for two weeks because they thought it was
TB!