[Idiopathic PN]

I have Mycobacterial Avium. My pulmonologist recommended the combination of Ethambutol, Rifabutin and Biaxin.

Ethambutol is in the list of antibiotics that may cause neuropathy. I looked up for any substitute for Ethambutol but it serms that the effect is same. My stomach cannot tolerate strong antibiotics. Is/are there supplement/s to take to minimize the effect on the nerves? Other than ptobiotics what can I take to minimize stomach upset and nausea caused by this antibiotic?

I will appreciate your insights.
Thank you.

[mrsD]

I don't know what you can do. The mycobacterium family is difficult to eradicate and get rid of in the human body. Their cell walls protect them from most antibiotics. The TB bacteria now are becoming drug resistant across the world.

This is the Wiki on ethambutol:
http://en.wikipedia.org/wiki/Ethambutol

When you have a disease that has little or no treatment then patients are just stuck with having to endure a difficult solution.

This article lists the various things that may prevent neurotoxicity from chemo drugs. Acetyl carnitine, we know about here. Glutathione can be stimulated by NAC supplements.
(n-acetyl-cysteine). I believe the carnitine is given usually in 2000mg doses daily in divided doses for best absorption.

I have very little experience with ethambutol. It is not used much in US.

I'd discuss with your doctor if there is any way to protect you from the toxicity of this drug, that he knows about. Perhaps he can contact someone who knows more about it.

From what I see on PubMed, ethambutol's most likely to affect vision. So report any changes in vision immediately. Some of the papers on PubMed say it is less toxic than some other TB drugs.

[en bloc]

Sorry I don't have anything to offer about your question regarding this antibiotic.

I'm just curious about the mycobacterial Avium. Is it a form of TB? Didn't you have TB in the past? If so, does it mean this is probably resulting from the previous infection?

Just trying to understand what you're going through. I'll assume this is the reason for your SOB. Any clue how you got this?

[mrsD]

There are many strains of mycobacterium. TB is one, but there are others. Some are less virulent in people.
Avium is one. Mycobacterium chelonae is another that lives in soil and tap water. This one infects sinuses (people who do neti pots and do not use sterilized water) and also causes surgical infections, and abscesses.

All the mycobacteria, have difficult cell walls, and are hard to eradicate. TB is just one that infects humans more virulently.

[Idiopathic PN]

Originally Posted by mrsD

I don't know what you can do. The mycobacterium family is difficult to eradicate and get rid of in the human body. Their cell walls protect them from most antibiotics. The TB bacteria now are becoming drug resistant across the world.

This is the Wiki on ethambutol:
http://en.wikipedia.org/wiki/Ethambutol

When you have a disease that has little or no treatment then patients are just stuck with having to endure a difficult solution.

This article lists the various things that may prevent neurotoxicity from chemo drugs. Acetyl carnitine, we know about here. Glutathione can be stimulated by NAC supplements.
(n-acetyl-cysteine). I believe the carnitine is given usually in 2000mg doses daily in divided doses for best absorption.

I have very little experience with ethambutol. It is not used much in US.

I'd discuss with your doctor if there is any way to protect you from the toxicity of this drug, that he knows about. Perhaps he can contact someone who knows more about it.

From what I see on PubMed, ethambutol's most likely to affect vision. So report any changes in vision immediately. Some of the papers on PubMed say it is less toxic than some other TB drugs.

Thank you Mrs.D. I am taking Acetyl L Carnitine. Will there be no side effects if add N-Acetyl Cysteine in my list?

[Idiopathic PN]

Originally Posted by en bloc

Sorry I don't have anything to offer about your question regarding this antibiotic.

I'm just curious about the mycobacterial Avium. Is it a form of TB? Didn't you have TB in the past? If so, does it mean this is probably resulting from the previous infection?

Just trying to understand what you're going through. I'll assume this is the reason for your SOB. Any clue how you got this?

Mrs.D is correct (as usual). Mycobacterium Avium is a "cousin" of Mycobacterium Tuberculosis. The doctor explained that M.Avium is environmentally acquired, not contagious. It can be found in soil, water, air, birds drop, anywhere. So, we are all prone to get it. If one is healthy, even he/she gets it, it will just disappear on its own. In my case, since I already had a previous infection, I was likely to get it. It is more critical for AIDS patient.

Strangely, the doctor said, it is less likely the cause of my SOB, but it is more likely the cause of the decline of my lung function.

I dont know where I got it, maybe in the soil (I do a lot of gardening) or in the air I breathe. We live by the pond where there are lots of ducks and sometimes birds from other countries when they migrate.

By teh way, the doctor took me off Symbicort and just continue the Spiriva.

My main concern now is hte effects of these medicines. I had difficulty when I was on TB medications before. I was hospitalized due to nausea and vomitting. My stomach dooes not do well with antibiotics (especially now that I am having problems with my stomach too). ALSO, I could not be treated with anything that will suppress my immune system. I will discuss this with my new rheumy on friday.

Well, one day at a time.

Thank you en bloc.

[mrsD]

I don't think you can consider a goal of "no" side effects.

All you can do is minimize their risks.

Everyone responds differently, as well.

[Idiopathic PN]

Originally Posted by mrsD

I don't think you can consider a goal of "no" side effects.

All you can do is minimize their risks.

Everyone responds differently, as well.

Thank you MrsD. I'm taking a-l. Carnitine. ...is adding n -l cysteine to my regimen safe?

I appreciate all your help.

[mrsD]

NAC is pretty easy to tolerate. Average dose is 600mg a day. It is a precursor to glutathione manufacture in the liver.

You'll see here in this very complete monograph from WebMD that it can help COPD....

http://www.webmd.com/vitamins-supple...TYL%20CYSTEINE

There are several doses suggested for various purposes.
I think it would be a good idea to ask your pulmonologist just in case. It can help break up thick mucus in the lungs to facilitate breathing.

It is not expensive either. It is worth a try, and discussing with your doctor.

[en bloc]

I have one other concern. If you're starting 3 antibiotics and supplements also, how will you know which is causing side-effects, nausea, or even helping?