Hi there,
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<br />I went to a friendly NTM specialist because I had cultured mycobacterium avium too. He suggested that I look at this website: <A HREF="http://ntminfo.org">http://ntminfo.org</A> for information. It is a website that was started by someone who was a patient at National Jewish Hospital in Denver. There is tons of information on it and a support group. Be forewarned, some of the discussions can be pretty disheartening.
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<br />Anyhow there seems to be a variety of types of mycobacterium avium - some which affects the lobes and is more serious and some that results in mostly cylindrical bronchiectasis. The latter type is less serious and is a bit of a judgement call on whether they will treat it or not.
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<br />Typically when it is treated it is treated with three drugs that are similar to those used for treating tuberculosis. Quite a few people have problems with these drugs - so that's why they don't always treat it if things are mild or in control. Also, these days they don't always make you take all 3 of these drugs every day if your situation is pretty mild. If you have a doctor that is up on the research at National Jewish Hospital, you''re likely to end up on a protocol that may be just 3 days a week.
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<br />Things to do: If possible, reduce your exposure to aerosolized water. That is if you use a shower, run the shower for a few minutes before you get in to disperse the mycobacterium in the showerhead. (When it first comes out, there will be more in the air.) If you can replace your showerhead frequently - especially if it's plastic. The amount of mycobacterium that grows on a showerhead in a month can keep you pretty sick. Indoor pools, swimming in lakes and using hot tubs or steam rooms are also not great ideas. There's some maps of where mycobacterium is more prevalent and I believe Florida and the east coast are areas that are indicated. Mycobacterium is pretty common in lakes and streams. People will tell you that you can't avoid it, because it's everywhere (like in dirt). But you have to decide what's reasonable for you to avoid, after reading what a pain it is to get rid of - or keep in control.
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<br />I love to swim, but I bought a small trampoline instead to make up for the swimming that was no longer wise for me to do in an indoor pool. I also take a vacation to swim in the ocean now and then. Sure there's some mycobacterium there too, but hey, you've got to live sometime. In some ways, it was a good experience for me finding out I couldn't spend all that time in a pool. I took up hiking in the Southwest, which I would never have done before.
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<br />Research on new drugs for mycobacterium is pretty thin - there just isn't the funding for this.
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<br />A few years back I stumbled across an article about a chinese herb that was extremely active against mycobacterium avium (I believe it was by a scientist in a Botany dept.). I did correspond with the scientist who wrote it and he told me that his graduate student who was Chinese did a lot of the work and research and that if you made up a tea with it - like the Chinese traditionally do -- (say quite a few handfuls of leaves/stems/aerial portion of the plant) you would have quite enough to kill off the mycobacterium. This is how it has been used traditionally in China for a long time, which is why the Chinese student wanted to work on this. I did do a bit more research on it, because I know a fair bit about Chinese Herbs. (the herb is called Impatiens Balsamina L. also known in Chinese pinyin as Ji Xing zi) However, it's not a commonly used herb in North America - although it's a pretty easy to grow plant once it is established. And the problem with buying it - say in a Chinatown is that in China itself the name Ji xing zi refers to two different plants, so it's quite likely you'll get the wrong one. The best way is to actually buy the seeds at a reputable seed house (not many carry it) and grow the plant from scratch.
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<br />You may also want to be thinking about what is it that is allowing the mycobacterium to take hold in your system and how you can make yourself stronger. There are a number of things that can predispose you to it. Of course one is CF. There are other factors which you will learn about on the NTMorg board. Some women who have scoliosis, slender build and double-jointed hands, etc. appear to be predisposed and will culture it when they are older. (This is called Lady Windermere's disease, after a character in an Oscar Wilde play, who was too polite too cough.) Although I've got this stupid thing and I'm old enough to play the part (groan), I suspect that I may have first gotten mycobacterium in my twenties.
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<br />In any case, the best thing for mycobacterium will sound pretty familiar. It's lung clearance. Big emphasis on lung clearance and cough, cough. They even call the newsletter put out by the ntm site "cough, cough"".
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<br /> It always seems counterintuitive to me to work out when I'm feeling like crap, but with Mac, I've learned that taking it slow and working up to a good steady level is really helpful. The more exercise I can do the better everything is, not just the Mac. I am working on a running program now. Started run 1 minute and walk 1 minute for 20 minutes, and have moved up every week to increase the amount of time running. Do whatever works for you to make you feel as healthy as you can be. Of course, though, you have to really listen to your body and know when to push even when you don't want to and when you need to dial it back.
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<br />You asked about symptoms: often they are TIRED, afternoon or evening low fevers, sweating, possibly loss of weight. Feeling like crap - definitely not a feeling of well being. And coughing up blood.
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<br />Keep in mind that when I joined a clinic over 8 years ago with a fairly evident case of MAC (shown on CT's and displaying classic symptoms) that an infectious disease doctor wanted to treat, I was told by the CF clinic that over 50% of their patients had Mac and they felt I didn't need to be treated - even with the symptoms. Eventually they sent me to the Mac expert... who gave me that web page link.
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<br />Hope that helps Tamara.
