The Role of Referrals

NTM is infrequently diagnosed, but is likely not a rare condition. Rather, it is frequently misdiagnosed and often not even tested for.

Your local pulmonary or infectious disease specialist is the first step in diagnosing an NTM infection so that you can be treated. If you need to find a local specialist, a good place to start is with our Physician Referral List.

Treatment of an NTM infection can be quite complex and it is best to have a specialized mycobacteriology lab analyze your sputum so the species of NTM is accurately identified. This will help your doctor determine the best drug combinations to be used in your treatment.

Because of the complexity of developing a treatment plan, you may wish to ask your doctor about the feasibility of a referral to a center that specializes in treatment of NTM infections. The treatment course developed for you will be a partnership between your local physician, a pivotal member of your care team and the doctors at the referral center.

National referral centers that specialize in pulmonary NTM disease include:

  • Georgetown University Hospital in Washington, D.C.
  • The Johns Hopkins University, Baltimore, Maryland
  • Mayo Clinic in Rochester, Minnesota
  • National Institute of Allergy and Infectious Diseases in Bethesda, Maryland
  • National Jewish Health in Denver, Colorado
  • Oregon Health and Sciences University in Portland
  • University of California San Diego Medical Center
  • University of Florida in Gainesville
  • University of North Carolina in Chapel Hill
  • University of Texas Health Center in Tyler, Texas
  • Toronto Western Hospital in Ontario
  • Several locations in Queensland, Australia

The choice of the patient who authored this website was to initially go to a national referral center because they specialize in treatment of respiratory diseases including mycobacterial infections.

In addition to pulmonary and infectious disease specialists, other medical professionals who may be valuable additions to your team include internal medicine specialists, respiratory therapists, dieticians or nutritionists, and mental health professionals.

Many patients also like to explore alternative medicine treatments. Although most alternative medicines and treatments are not FDA-approved or scientifically vetted through clinical trials, some patients report therapeutic benefits from different kinds of alternative medicine and vitamins or supplements.

If you have found something that works for you, that is great! But before you try anything, particularly something that you ingest or inject, please consult your physician. Certain vitamins and minerals (calcium, for example) can interfere with the effectiveness of certain antibiotics, as can certain food products such as grapefruit and grapefruit juice, so it is important that your doctors know what you are taking, in case you need schedule those differently from your prescribed medications. You can also consult with your pharmacist about drug/supplement interactions.

In addition, you should never start or stop any prescribed medication or treatment without consulting your doctor first.

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