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#6375
Anonymous
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Wow Kathy, I just read your post and it reminded me of 35 years ago when my pulmonologist told me the exact same thing. We took the “wait and see” approach. Nothing seemed to be changing so I had a CT and Chest XRay every 6 months for years.

In 2001 I started getting really sick. My allergist recommended a bronchoscopy. My sputum cultured out for MAC. I then went to National Jewish for a 2nd opinion and they told me that my right middle lobe need to come out as it had a very large concentration of MAC. Evidently my pulmonologist didn’t know what to look for in my CT’s and XRays. He thought what he was seeing was either pneumonia or bronchiectis. It’s now 2008 and I’m still fighting the fight for MAC. Granted back then Dr’s didn’t have a clue about NTM disease…..today many do.

I can’t stress how important it is to see a Dr that’s knowledgeable about NTM disease or if he’s doesn’t know about it will agree to consult with one of the big 3 centers. PLEASE do not take the “wait and see approach”. You can get your disease into remission if you get it in the early stages.

I know your thrilled at not taking meds at this time, but what do you think is going to happen if you don’t take them and your disease gets worse?

Go to this website and check out what they have to say about treating this disease.

Oh yes, another thing…..I hate to tell you this, but I’ve met several MAC’ers who don’t fit the “thin” profile. In todays MAC world even men are coming down with it. This is not a reportable disease as yet so the profile of a MAC’er could be all wrong.

I found the following on the http://www.MAClungdisease.org website up on the top bar “FAQ”.

Q: What are the expectations related to progression of MAC?

A: MAC may occasionally cause absolutely no symptoms or illness. It may be diagnosed before or after it has caused damage to the lungs. MAC may progress by nodular growth and chronic infection. There is no known explanation or rationale for these phenomena. Each MAC case may vary tremendously in terms of symptoms and computerized tomography (CT) scan findings. Most patients with MAC and bronchiectasis are followed indefinitely with CT scans and sputum cultures. Without drug therapy, cavitary disease often progresses to additional lung involvement within a few months, while nodular disease may progress more slowly. This may cause worsening of cough and fatigue, and more shortness of breath. The disease does not progress and clinically improves with appropriate drug therapy as evidenced by X-rays or CT scans.

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