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Old 12-05-2011, 10:08 AM   #1
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Question Complementary therapies for MAI/MAC

Hello all,
I would like to ask what others are doing in addition to or instead of antibiotic therapy to address MAI (mycobacterium avium intracellularae). I am hoping to avoid having to take the antibiotics. Here is what I am doing: 30 minutes walking a day, supplements (multivitamin and mineral, omega 3, calcium and magnesium, vitamin D), probiotics, lungwort tincture (lobaria pulmonaria), mustard plasters (aim for daily), mostly organic diet (and try to eat enough to keep my weight up), and weekly Reiki treatments. I have been researching probiotics (they are definitely not all the same!) and have learned from sources that are scientific and seem credible that different strains can counteract each other (this contradicts what I had read earlier that you should have at least 10 strains). Also that research suggests that probiotics can be helpful with respiratory issues; moreover, one should use a probiotic that has the strains that are pertinent to what you are treating. What I have not clearly discovered is which strains are best for lungs. Anyone know?
Would really like to hear what others are doing. Thank you!

 
Old 01-16-2012, 05:46 AM   #2
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Re: Complementary therapies for MAI/MAC

I just came from National Jewish Hospital In Denver,Colorado. I was put on
Jarro-Dophilus EPS. Seems to be helping. National Jewish is the leading research hospital for all things respiratory. The Dr. I saw was one of 3 that wrote the medical journal on all things MAI/MAC related. I hope this helps.

 
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Old 01-16-2012, 08:08 PM   #3
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Re: Complementary therapies for MAI/MAC

Quote:
Originally Posted by kiddutton1 View Post
I just came from National Jewish Hospital In Denver,Colorado. I was put on
Jarro-Dophilus EPS. Seems to be helping. National Jewish is the leading research hospital for all things respiratory. The Dr. I saw was one of 3 that wrote the medical journal on all things MAI/MAC related. I hope this helps.
Is this Jarro-Dophilus EPS is a probiotic? Please keep us informed as to how it works out for you. I also have MAC, but am unable to tolerate the antibiotics due to they effect my liver (in hospital for a week with liver failure) and also the meds make me so nauseated and I was unable to eat. Lost down to 92#. My doctor has tried 9 different antibiotics and finally took me off all meds. Last x-ray showed my lungs are "alot worse" (to quote the doctor). Have cough, chest pain, night sweats and very short of breath. I wish you good luck...take care.

 
Old 01-18-2012, 06:31 AM   #4
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Re: Complementary therapies for MAI/MAC

Yes, the Jarro Dophilus is a probiotic. Sorry to here you can't tolerate the medicinces. They made me sick in the beginning and eventually my body became accustomed to it. I have my levels checked monthly ans as of yesterday I'm doing fine. The reactions to the meds as of yet.

I went to National Jewish the first week in December. I didn't feel as though my pulmonologist had a grasp of the diease and what damage it was doing. So my research led me to Colorado.

I was right he was doing the minimal amount of meds. Turns out I have The mycrobacterium avium intrecella. So it creates cavaties through out the lungs. Weakening them even further.
While there they ran a battery of test. Turns out I have Asthma, Severe GERD that is aspirating into my lungs when I lay down, as well as several other small things to add to the list. Seems the GERD comes with the MAC disease.

I now take all my meds 7 days a week instead of M-W-F and the dosage is maxed out. I have till Feb. on this dosage and we test again and run another CT Scan. If at that time their isn't more closer of the cavaties they want to install a Pic Line and try intravenous Amakacin. I'll try that for 2 months and if still not enough closer we are going to have to do surgery to remove both upper lobes of my lungs.

What options are your doctors suggesting? Have you seen any specialist, like Infectious Disease Doctor? I really hope things get better for you. Please feel free to chat with me anytime. I know how hard this is to be doing alone. Hard for others to understand the effects this disease takes on the mind and body.

 
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Old 01-22-2012, 12:18 PM   #5
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Re: Complementary therapies for MAI/MAC

Thanks for the info. I had been under care of ID doctor who has basically told me my body cannot tolerate the meds... More or less just wrote me off by saying "come back to see me if you need to". I then went back to my pulmonolgist who was very upset that the meds had been stopped, but did not offer me any other suggestions after telling me my lungs were "alot worse". Just told me to come back and see him 3 months. I have since had pneumonia AGAIN and lost 7 more pounds. I would like to go to the MAC/MAI specialist we have here in East Texas, but currently don't have any insurance so that will have to wait. It's all very frustrating. Hope all goes well for you and you don't require surgery. Please chat with me anytime. Sometimes I just need to vent.

 
Old 02-03-2012, 08:19 AM   #6
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Re: Complementary therapies for MAI/MAC

Monday is my ct scan. Getting kind of nervous. However it will be weeks before i know anything. I have to forward everything to colorado and wait for the to get around to reviewing it and then calling me with a decission.
I really wish i had some sort of advice to share with you. How helpless you must feel. I know for me this has been the most frustrating and depressing thing i've ever had to deal with. Its a constant struggle everyday to get up and get to work as well as stay on top of the medicine and doctors. I really hope you here some sort of good news in the future about your health care.

 
Old 02-05-2012, 10:45 PM   #7
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Re: Complementary therapies for MAI/MAC

I hope your CT Scan goes well and that you don't require surgery. It's going to be hard to wait for results, but keep a positive attitude that you can lick this thing. I have had others tell me that they have had good results with treatment, but you are right...it is very frustrating. As for me, I am still waiting on March when I can get some insurance at my job and then be able to see my doctors again. Hopefully they can give me some direction as to what I need to do next. Take care and write me anytime.

 
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