Alternative Treatments for MAC: immunotherapy, etc.

Posted by jspremich @jspremich, Apr 5, 2018

I was diagnosed with MAC a little over 2 years ago. Have not yet starting taking antibodies. Although I suspect this will happen in the very near future. Has anyone explored alternative treatment, i.e. immune therapy?

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I'm 70 year old female with a long history of weird illnesses. Most recent 2014 Asthma, 2015 COPD, 2016 Bronchiectasis, 2017 Pseudomonas. Been hospitalized every year sometimes twice year, with pneumonia.
In July 2022 diagnosed with Mycobacterium Avium Complex. Infectious Disease Dr started me on 3 antibiotics (Azithromycin, Ethambutol, Rifabutin). The side affects have been horrible. Now… November blood tests show liver problems. Dr has stopped all 3 antibiotics. Has anyone else had liver problems where the Dr took them off the 3 original antibiotics. What did your Dr put you on after your liver came back to normal numbers? I agree with a lot of you….(I don't believe there is a cure)…even if your mucus samples show you are clear…MAC comes back. I'm pretty discouraged about a future…..especially on long term antibiotics with side affects worse that the disease. But I certainly tired of Drs'… "Practicing Medicine" with my body…..saying try this….if that doesn't work…try this.

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@windwalker

@alleycatkate I looked up NAC on NIH and Mayo sites. Certainly worth trying. Both sites say that it is effective as an antioxident, it breaks down mucus, is an anti-inflammatory, and is also used in psychiatry to calm OCD, bi-polar, and schizophrenia. It helps restore the liver also. It contains sulphur, which is an antifungal and has amino acids which is protein to build muscle and tissue. It comes in pill form as well as an inhaleable. Can buy ovet the counter, but suggested that you get prescription strength. I will ask my doctor about it. Thank you for the post.

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I tried NAC and it has great healing potential but did not work for me. Since I have arthritis, NAC made it flair. It is a side effect. If I didn’t have arthritis, I would be taking it.

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@barbbauer

I'm 70 year old female with a long history of weird illnesses. Most recent 2014 Asthma, 2015 COPD, 2016 Bronchiectasis, 2017 Pseudomonas. Been hospitalized every year sometimes twice year, with pneumonia.
In July 2022 diagnosed with Mycobacterium Avium Complex. Infectious Disease Dr started me on 3 antibiotics (Azithromycin, Ethambutol, Rifabutin). The side affects have been horrible. Now… November blood tests show liver problems. Dr has stopped all 3 antibiotics. Has anyone else had liver problems where the Dr took them off the 3 original antibiotics. What did your Dr put you on after your liver came back to normal numbers? I agree with a lot of you….(I don't believe there is a cure)…even if your mucus samples show you are clear…MAC comes back. I'm pretty discouraged about a future…..especially on long term antibiotics with side affects worse that the disease. But I certainly tired of Drs'… "Practicing Medicine" with my body…..saying try this….if that doesn't work…try this.

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To protect liver, I take NAC 600mg 3 times a day. I also took Milk Thirstle. Both are supposed to detox liver.

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I've taken NAC 600 mg...twice a day for 4 years. It does help with clearing the mucus. I think it is a better product than the OTC Mucinex. Yes I realize it detoxes the liver ...which is an added benefit. Thank you for responding. We need all the help we can get dealing with this disease.

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@caontm

To protect liver, I take NAC 600mg 3 times a day. I also took Milk Thirstle. Both are supposed to detox liver.

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Thx for sharing your difficult story. What is NaC??

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@barbbauer

I've taken NAC 600 mg...twice a day for 4 years. It does help with clearing the mucus. I think it is a better product than the OTC Mucinex. Yes I realize it detoxes the liver ...which is an added benefit. Thank you for responding. We need all the help we can get dealing with this disease.

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With my autoimmune diseases I was unable to take the big 3. My doctor was not pleased with me. After writing to my pulmonologist to give me 7% sodium chloride, he begrudgingly prescribed. I do the vest and 7% 30 minutes twice a day. It hasn't cured me, but in the past year, nodules have disappeared, new ones have appeared, but my breathing test and ct scans over the past year are the same. Nothing has gotten worse and breathing test was slightly improved.
Two of my other doctors felt I could never tolerate the meds and I knew I could not. I have MAC and bronchiectasis with occasional coughing up blood. I believe there are other methods besides the big 3.
Lorraine

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@barbbauer

I've taken NAC 600 mg...twice a day for 4 years. It does help with clearing the mucus. I think it is a better product than the OTC Mucinex. Yes I realize it detoxes the liver ...which is an added benefit. Thank you for responding. We need all the help we can get dealing with this disease.

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It is amazing the different ways patients are advised and what they take and don't take. I also take NAC 600 mg twice a day. Can't pinpoint if it makes any difference because I do so much other stuff. I was hospitalized eight days for COVID and because my cough was so bad they gave me Mucinex which helped settle it down. My post-hospital pulm doc visit said he did not recommend taking Mucinex regularly because it might suppress the cough when you actually need to cough to expel sputum. I neb twice daily with 3.5% sodium chloride and am inhaling Tobramycin (2 weeks on and 2 weeks off). Have had pseudomonous A. return over and over for more than four years. It's a battle and we just need to find our best weapons. Best to everyone.

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@fdixon63

It is amazing the different ways patients are advised and what they take and don't take. I also take NAC 600 mg twice a day. Can't pinpoint if it makes any difference because I do so much other stuff. I was hospitalized eight days for COVID and because my cough was so bad they gave me Mucinex which helped settle it down. My post-hospital pulm doc visit said he did not recommend taking Mucinex regularly because it might suppress the cough when you actually need to cough to expel sputum. I neb twice daily with 3.5% sodium chloride and am inhaling Tobramycin (2 weeks on and 2 weeks off). Have had pseudomonous A. return over and over for more than four years. It's a battle and we just need to find our best weapons. Best to everyone.

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which version of Mucinex did he not recommend? The one with other things added to it or the original one which is just the guaifenesin? That would be important to know.

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@irenea8

which version of Mucinex did he not recommend? The one with other things added to it or the original one which is just the guaifenesin? That would be important to know.

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Brand name, etc. was not discussed. What I had purchased over the counter was just the guaifenesin. I've only taken two in the two months out of the hospital just to give myself a break when coughing was so prolonged and my body needed a break. Sorry not more help.

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@barbbauer

I've taken NAC 600 mg...twice a day for 4 years. It does help with clearing the mucus. I think it is a better product than the OTC Mucinex. Yes I realize it detoxes the liver ...which is an added benefit. Thank you for responding. We need all the help we can get dealing with this disease.

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I tried the NAC and it made my arthritis flare. If you don’t have arthritis, it is can be good for the mucous.

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