wxmen
User
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Re:why so much conflicting info? - 2010/01/17 00:41
I share your frustration. The disease affects different people in different ways. MAC is a lot like its cousin, TB. Most people who test positive for TB do not come down with TB. They are, however, treated and this is for 2 reasons: The treatment is not that difficult and "only" lasts 6 months and it almost always gets rid of the TB permanently. I believe that if the general population were tested for MAC that MANY more cases would turn up and most of these would not progress.
Another factor is that most MAC patients also have bronchiestasis and the symptoms are similar. There is no way of telling which (or both) is causing the symptoms and this problem can lead to much confusion. Of course, if you are take the drugs for MAC and they do manage to get rid of the MAC, at least temporarily, you may still have symptoms due to the bronch. Sometimes the bronch is the main culpret and the MAC is rather benign.
Most GPs have never seen a case of MAC or at least never recognized a case. Many pulmonologists have seen few cases and differ on what, if any, treatment should be given based on their limited experience and knowledge. Even doctors at NJH can't seem to agree on what to do. It is not a question of honesty; I'm sure almost all doctors are honest. They are doing the best they can but sometimes that is not enough.
George
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