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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
Jen Taylor and Paula....to add to the comments re Drs not agreeing re treating MAC ....I have had sort of same experience with Drs disagreeing....I had to find a new Pulmonologist locally....he refused to agree wth NJH 's decision not to treat me with antibiotics . The new one agrees with NJH. I am still amazed that the ID Dr that I was sent to by former pulmonologist would have begun me on the 3 antibiotics within one minute of meeting me....she had begun to write out prescriptions til I said " wait...I am going to NJH "
I must also add that when I compare the details of 3 different chest CAT scan reports ....10 years ago....1.5 years ago and then this past January . The one done at NJH contained 10x more info/interpretations as well as guidelines for future scanning!! The person reading the scan at NJH had by his name"Certified in thoracic reading" ...maybe this is the difference? Regular radiologists vs further specializing in body areas.tdrell
Replies to "Jen Taylor and Paula....to add to the comments re Drs not agreeing re treating MAC ....I..."
I would also like to add that many 'local' doctor's offices use antiquated
equipment. When I presented my films to the Mayo Dr, he laughed at them. Said I
needed all new because my local doc was using equipment from the Flintstones and
he could not get an accurate reading on them. He showed me the ones I had
brought in beside the new and there was a big difference in the image!
Another thing, that is the reason I go to the Mayo, they use cutting edge
equipment.
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@tdrell, it's rather unsettling that your ID doc wanted to begin you on the 3 antibiotics upon meeting you, and that you had experience with two other pulmonologists who didn't agree on treatment. If one is asymptomatic, it makes it all the more difficult.
To further add to your comments about "Drs not agreeing re treating MAC", that's one reason I'd love to see a NATIONAL REGISTRY ... where every state in the USA needed to report on each patient who contracted NTM, which species/type, symptoms, and treatment. The NTM conference had a speaker who collects and analyzes NTM data, which is so limited and based on Medicare claims. Yikes! Just imagine how much useful information each state registry could provide.
Re. NJH providing better details and interpretations of your CAT scans, I think that's for several reasons: NTM is a disease they specialize in, but also that they knew what you were coming there for and what to look for. Perhaps 5 or 10 years ago, their details would not have been so 'sharp'. Today, more scans are being given everywhere for other things and so the medical community is discovering more NTM. Yep, it is very important to have scans or x-rays read by a radiologist who is extremely familiar with that particular part of the body. Hope you are doing well these days.
Paula