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Old 10-30-2011, 03:30 PM   #1
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Nu2This HB User
mycobacterium avium complex/prognosis?

Was taken off all antibiotics in Sept. This was second time this has been done (different meds used each time). Saw ID doctor this week and he doesn't want to attempt any further antibiotics because of my extreme reactions to all he's tried. He says the treatment is worse than the disease in my case and he has referred me back to my pulmonary doctor. Have appt. with him in couple of weeks. My question for some of you who may have also been through this - What happens if this disease is not treated by antibiotics? Just wait to see what course the disease takes? I still have the shortness of breath, cough, chest pain (also have bronchiectasis and COPD), night sweats, and EXTREME tiredness. Thanks for any input/suggestions and hope all of you are doing well.

 
Old 10-31-2011, 02:13 PM   #2
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pegkro HB Userpegkro HB Userpegkro HB User
Re: mycobacterium avium complex/prognosis?

Quote:
Originally Posted by Nu2This View Post
Was taken off all antibiotics in Sept. This was second time this has been done (different meds used each time). Saw ID doctor this week and he doesn't want to attempt any further antibiotics because of my extreme reactions to all he's tried. He says the treatment is worse than the disease in my case and he has referred me back to my pulmonary doctor. Have appt. with him in couple of weeks. My question for some of you who may have also been through this - What happens if this disease is not treated by antibiotics? Just wait to see what course the disease takes? I still have the shortness of breath, cough, chest pain (also have bronchiectasis and COPD), night sweats, and EXTREME tiredness. Thanks for any input/suggestions and hope all of you are doing well.
I had MAC back in 2007, and was on rifamin, ethambutal, and xythromycin(sp) for a year and a half. The total daily dosage of the combined drugs was 2600mg. I took probiotics every day, and took the meds with the lowest dosage in the morning with breakfast, usually a pancake. The second largest dosage, I took when I ate what I would call at the time, my main meal. My appetite was not good, so I ate what sounded good to me and stayed down. The largest dosage, I took at bedtime. I also had a xanax 0.5mg. that I took at bedtime. Sometimes it helped. I didn't take any medication on Sunday. Then on Monday, I started all over again. I felt real bad the first 3 months, but then the night sweats began to dissappear, and although my appetite continued to be not so great, I started to feel better and was able to do more than just move from the couch to the bed and back again. My pulmonary Dr. was supportive in all of my decisions as to how and when to take my meds. You may have to take them only three times a week, and take them for a longer period of time, but you need to be on some sort of antibiotic therapy, because the MAC will continue to grow and take over your healthy lung tissue. I found what worked for me by trial and error. I hope this helps you some. By the way, I was 65 when diagnosed. I have been MAC free for 4 years. Good luck and God Bless. I'll keep you in my prayers. Peggy

 
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Old 10-31-2011, 03:04 PM   #3
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Re: mycobacterium avium complex/prognosis?

You may not want to hear this .. but if I was you .. I would spend the airfare to go to Mayo Clinic in Rochester, Minnesota to see Dr. Timothy Aksanit.

He is on the National Board of Directors of Nontuberculous Mycobacteria NTM Info & Research. I feel SO blessed to have found him as he specializes in MAI or MAC. If anyone can have a reaction to any drug .. especially antibiotics .. in the past it has been me! I am now in the 2nd month on 4 antibiotics .. am beginning the 5th antibiotic .. am doing just fine so far. Side effects quite bearable! I WILL say .. I began working with a 14 year practicing pharmacist who is ALSO a practicing Homeopathic Practitioner. I do believe she has helped my body "balance" homeopathically and adjust more readily to the harshness of the 5 antibiotics. I absolutely could not ask for more!

Now I won't say this will happen for you .. but he knew how frightened I was of this treatment .. how reluctant I was ..I am just grateful to under his care! It would be worth your effort to have him evaluate you. Frankly I delayed treatment too long because of my fear of the side effects .. the result was that in one year my CT scans showed a dramatic downturn .. it would not have been much longer before I would have been on an oxygen tank .. no thank you! I am SO grateful I trusted the Dr. and agreed to the treatment!

Within 3 weeks my coughing went from up to and more than 1 hour of coughing as I was attempting to go to sleep .. to nearly zero coughing! From barely being able to talk on the phone due to coughing .. to being able to actually hold a conversation on the phone! Absolutely amazing in just 3 weeks on 4 antibiotics! Because I have 2 Mycobacterium I must today begin the 5th antibiotic .. the Inhaled Amikacin. can't wait to see how I have improved! I would suggest you give it a try .. your health is at stake!

I was diagnosed with Mycobacterium avium-intracellulare(MAI or MAC) in 2008. I REALLY did not want to go on the treatment of 3 antibiotics for 18 mos to 2 years that 2 different doctors called "toxic"! But in 5/11 they found a 2nd Mycobacterium in my lungs that now necessitate 5 antibiotics for 18 mos to 2 years! The 5th antibiotic is Amikacin which required 25-30 minutes on a nebulizer. My Doctor recommended the Pari LC Sprint for my Amikacin.

Last edited by Administrator; 10-31-2011 at 11:09 PM.

 
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