mac lung disease

I have Mac Lung disease for second time after 18 mo.
treatment. Please anyone--need advice.

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Gryn,
I wish I could advise. I just learned I have it and I'm still waiting to hear about the liquid they sucked out of my lungs to culture. I guess it takes long to grow. I don't know what is going to happen next. That is why I'm here, but this is not much help?? It's not a popular disease I guess. I want advice too.

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I have MAC and Sarcoidosis. (First they mis-diagnosed TB) After I finally finished about 6 months of the TB-like cocktail of drugs, I was put on a maintenance dose of anti-biotics. the infectious disease doc says I'll be on that the rest of my life. He had to research treatment protocol, because most of the info out there is for HIV-positive patients. My MAC is controled...the sarcoidosis is a different story!

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Hi,
I have mac too after treating it twice already, each time for one year. I couldn't do any more time than that. It's discouraging. I wish I had something useful to say.
Ro

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Ro-C I have often wondered how many times they
could treat Mac. I was on three drugs-ethambutol,
clofazimine and azithromycin for 18 months. The lung
Doc. just said thats enough, should be cured. No tests
at all. I did not feel any better , almost as bad as when I started. Almost 1 year later to the day I was tested because of a bad lung infection--Wow they found out
that I had MA I think I had both types of Mac when I was
first tested. Ro, do you think you would benefit from a
long term low dosage of an antibiotic? I believe that this is a part of the answer that will help us live a better life than we have now. I just cannot find enough information to back this up. There seems to be more of us out there, and some being treated like this.

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I discussed that idea with both the pulmonologist and infectious disease specialist. It's an option but not one that I would tolerate well. Last fall I went to National Jewish Hospital in Denver, which is supposed to be the center of the universe for bronchiectasis/mac, for a consult. They found some peripheral issues but recommended no changes to my lung treatment, except to add a Hill Rom vest. The drug we discussed for long term was azithromycin but I don't so well on it. Can you handle that one? I'm being treated for pseudomonas right now. Have you dealt with that one?

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No I have not delt with pseudomonas. What is it?
I have found that clarithromicin with a high intake of
probiotics works for me. But---do not know enough
about this treatment in the long term. Am still looking for information. I have been told that the national Jewish Hospital in Denver is one of the best for Mac as
well as The Mac Lung Centre in Tyler, Texas.
Wow, all the things that can go wrong with one pair of
lung!

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It's another bacteria. I've been taking iv antibiotics for it. How do you do on the mac drugs? I have great difficulties with them and often wonder how other people handle them. I will need to take them again some time soon.

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I had a lot of trouble at first with the Mac cocktail. I ended up in the hospital for a month after being on them for 5 mo. I had almost no potassium and really low
iron. They then discovered that I had Nocardia (another
bacteria) which is treated with Sulpha drug. It took a
long time to recover from all this. After that It went much better. I think it leaves ones stomach in a really
bad condition. pro-biotics help some.
Now I'm left with MA. I wonder if anyone out there has
started the IV treatment for MA.

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I had similar problems. It really took a toll. I've been treated with iv antibiotics for pseudomonas for my lungs only. What is MA? That's not familiar.

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Ro-C
MA stands for Mycobacterium Abscessus. It is the hardest form of MAC to treat. All treatment is done by
IV or by surgically removing the most infected part of the lung and then IV treatment. The drugs used are very invasive and the side effects down-right scary.
One of the drugs sometimes used is amikacin.
When I went to the Lung Specialist the first words out
of her mouth were "I hate treating this type of Mac."
My lung damage is severe, so no operation for me. It
would all have to be done with IV treatment.

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Just when I thought I knew the worst... I guess there's always more. I hope your IV treatment goes well. I did it for treatment of pseudomonas aeruginosa and found it was hard on my system. I don't believe that I'm a candidate for surgery either. I have mac but they decided to give me a bit more time before treating it. I tend to weaken and loose weight with those meds. How about you? Do you tolerate them well? I haven't used amikacin yet but I have heard of it.

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Ro-C
I decided not to do the IV treatment. At least not at this time. I have been without any meds. for MA for almost
1yr. I am no better no worse.
Yes, I lost almost 30lbs. while taking MAC. medication,
although some of it I am sure was due to having lung
infections while on it.
Gwyn

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