Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior to the end of antibiotic treatment .. not six and the darn critters are still there lying in wait to multiply! That is why it is so important to maintain our daily "lung hygiene" .. getting the sputum up and out . as well as staying as healthy and serene as possible.

As far as linking the doctors .. I know for Dr. Aksamit .. he speaks at conferences all over the world .. plus writes papers. Truthfully .. this subject is "above my pay grade" .. I really don't have a clue how doctors keep up on these things. I hate to say this .. but my guess is that perhaps a bit of ego might get involved also? Our type of Forum .. sharing might not work? BUT one of the things I REALLY like about Mayo Clinic is that they DO work as a team .. they DO consult with each other .. team work .. sharing cases with each other .. sharing problems .. ideas .. THAT is what I think is a wonderful part of going to Mayo Clinic! You get the brains of many if there is a problem!

Frankly I think as patients we can EASILY see just how difficult it is for doctors to "keep up" when they must see a new patient every 15 minutes (as now allotted by the insurance companies), keep all the new computerized medical records required .. PLUS even attempt to keep up on ANY new illness they are unaware of/do not remember from medical school .. or all the new medical treatments/medicines that have been discovered!!

I think that is WHY I am such a BIG advocate on our Forum of each of us doing our OWN "Due Diligence" .. printing out information .. AND taking that information to your doctor! Many on our Forum have said that information they have learned on our Forum is NEWS to their doctor! It may be sad .. but true .. "If it is to be .. it is up to ME!".

That said .. I still REALLY like your idea of contacting labs .. MANY OF US blasting them with letters requesting help with new antibiotics for our disease. Dr. Aksamit has told me that since it is a relatively rare disease .. there just has not been money for research. Maybe no money .. but maybe publicity?

By the way .. are ALL of you aware that if you shop at Amazon.com you can request a portion of your purchases be given to NTM?? I have been doing it for a couple of years!! It is called: Amazon Smile. You can find out about it at:

NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir's mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

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