MAC infection treatment

Posted by sharondig @sharondig, Oct 9, 2024

hello everyone, I just joined this site to gather info and share my journey with others. I have just started treatment MAC. I will be taking the big three as some of you call it and will be documenting my progress. My question is, can anyone share their experience with these medications and the actual treatment? It’s a very long process and am hoping to have minimal side effects.
Thanks so much for all of your help!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@kathyjjb

More on stem cell research. Sorry. I could not download and upload this but you can google the following: The research done in China was published in"Journal of Protein and Cell". Title is: "Regenerated functional alveoli by adult human SOX9? airway basal cell transplantation". Previous mice study with BE recovered lost respiratory function. 2 human patients showed continuous improvement. Maybe not "cured" but researchers did imply cure after 5 years. Also mentioned that the research team has already performed 80 stem cell transplants in patients with COPD. Interstitial lung disease, BE, and other lung diseases. That's very interesting!

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This subject is one of great interest to those of us with lung diseases for which there is currently no known cure. The paper you cited ( https://pubmed.ncbi.nlm.nih.gov/29344809/ ) is from a study 7-8 years ago, so I dove into Google Scholar to see if there is any news of note.

Here is article from 2023:
https://link.springer.com/article/10.1186/s12967-023-04729-9
The current limitation is a familiar one - HOW to manufacture these unique stem cells in sufficient quantity and purity that they are a practical solution for thousands to millions of people. That breakthrough has not yet been achieved, so any treatments now will be in a research setting like in the study cited above, or as last-resort care for those who are at the end of life and for whom lung transplant is not as possibility.

This is part of their conclusion: " To date, most of the research on the treatment of chronic lung diseases with engineered MSC-exos has been in the basic experimental stage. As an emerging treatment strategy, its safety, effectiveness, and feasibility still need further evaluation, and so high-stage clinical trials are urgently needed. In addition, since engineered MSC-exos can obtain different therapeutic characteristics through different engineering methods, their heterogeneity in different patients can result in good targeting adaptability, providing new ideas for the individualized treatment of chronic pulmonary diseases. Although engineered stem cells are an emerging treatment strategy and require further research and clinical trials, their enormous potential does suggest the possibility for conquering difficult-to-treat pulmonary diseases."

If you want to dig into where there might be clinical trials, use this link:
https://clinicaltrials.gov/expert-search
In the search box type [mesenchymal stem cells] space [lungs] (or pulmonary or bronchiectasis) to see what is ongoing, or possibly recruiting. If they are recruiting there will be contact instructions. I cannot vouch for completeness or update on the list - often when a researcher leaves a team, the ball gets dropped and no more info is added.
Those of us who are "research nerds" periodically keep an eye on this and other research, so watch for more info.

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@namd

That is interesting. I had to take the 3 antibiotics every day. I tested positive after 4 months of treatment then had to continue for a year after that. I was very ill before I started treatment in December 2022. I feel much better this time and was quite shocked to learn that the NTM was back. America is way ahead of the UK with its treatment. Thank you for your support. I need lots of prayers! We eat early too and my bedtime is 10pm. I do not want to be off work this time.

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I meant to put I tested negative after 4 months!!

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@namd

Hi there,
I live in London. I was on the b8g 3 for 14 months felt pretty awful but cleared Mac after 6 months. I was on daily treatment I had to stop working. So many side effects and my weight loss was crazy. I am a slim lady anyway but I was less than 8 stone. It has taken me a whole year to put some weight back on. Felt so relieved when I stopped treatment. I ended up having to have treatment for an irritated bladder . I found out this week that my MAC has returned.i have to go on tje big 3 again. I will do it but if I feel as awful as I did the last time I am not sure if I will last the course. I will take my meds in the evening with food and I will take probiotics every morning. My anti nausea was the only thing that stopped me fro. Getting sick. I only want to take the big 3 three times a week as I do not want to have to give up my new part time job. Anyone got any advice about taking these antibiotics. I worry about the serious side effects. I am a 58 year old female who has rarely been ill the wham your life changes utterly

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Hi I have just had my MAC restart causing trouble again too, I have a new cavity and more ground glass and nodules. (after 3.5yrs stable being off the meds) also having symptoms, and will probably have to go back on meds according to Dr. Having Bronch Monday week to make sure some other bug hasnt started to grow. I feel for you, it is not easy but we are in this together. Take care Heather

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Hi Heather, this MAC is a right nuisance. I am going to insist on a 3 x weekly regimen this time as taking the big 3 on a daily basis was tough. I am starting probiotics tomorrow in preparation and will take Ondansetron to help with the nausea - it really helped.
Do you have Bronchiectasis? I hope your Bronch goes well. Let me know how you get on. My next appointment with my ID consultant is on 3rd April. I am more informed this time - I am sure you are too. Good luck. Take care, Niamh

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@sueinmn

This subject is one of great interest to those of us with lung diseases for which there is currently no known cure. The paper you cited ( https://pubmed.ncbi.nlm.nih.gov/29344809/ ) is from a study 7-8 years ago, so I dove into Google Scholar to see if there is any news of note.

Here is article from 2023:
https://link.springer.com/article/10.1186/s12967-023-04729-9
The current limitation is a familiar one - HOW to manufacture these unique stem cells in sufficient quantity and purity that they are a practical solution for thousands to millions of people. That breakthrough has not yet been achieved, so any treatments now will be in a research setting like in the study cited above, or as last-resort care for those who are at the end of life and for whom lung transplant is not as possibility.

This is part of their conclusion: " To date, most of the research on the treatment of chronic lung diseases with engineered MSC-exos has been in the basic experimental stage. As an emerging treatment strategy, its safety, effectiveness, and feasibility still need further evaluation, and so high-stage clinical trials are urgently needed. In addition, since engineered MSC-exos can obtain different therapeutic characteristics through different engineering methods, their heterogeneity in different patients can result in good targeting adaptability, providing new ideas for the individualized treatment of chronic pulmonary diseases. Although engineered stem cells are an emerging treatment strategy and require further research and clinical trials, their enormous potential does suggest the possibility for conquering difficult-to-treat pulmonary diseases."

If you want to dig into where there might be clinical trials, use this link:
https://clinicaltrials.gov/expert-search
In the search box type [mesenchymal stem cells] space [lungs] (or pulmonary or bronchiectasis) to see what is ongoing, or possibly recruiting. If they are recruiting there will be contact instructions. I cannot vouch for completeness or update on the list - often when a researcher leaves a team, the ball gets dropped and no more info is added.
Those of us who are "research nerds" periodically keep an eye on this and other research, so watch for more info.

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Hi Sue, Thanks for the info. I appreciate research nerds. I will take a deeper look at the clinical trial site. I did find more recent studies coming out of China up through 2024. Hopefully I will find something in US-thank you!
Kathy

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@namd

Hi Heather, this MAC is a right nuisance. I am going to insist on a 3 x weekly regimen this time as taking the big 3 on a daily basis was tough. I am starting probiotics tomorrow in preparation and will take Ondansetron to help with the nausea - it really helped.
Do you have Bronchiectasis? I hope your Bronch goes well. Let me know how you get on. My next appointment with my ID consultant is on 3rd April. I am more informed this time - I am sure you are too. Good luck. Take care, Niamh

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Hi Niamh,Thank you for your reply.
Yes I also have Bronchiectasis. I started ( wrongly as I had a caviity ) on 3 x a week big 3 meds, for around 5 years(and it was doing hardly anything but making me feel terrible)then my Dr realised that I should have been on daily instead, which I was on for another year along with arikayce inhaled( I was in the trial for Arikayce) which knocked it back enough for me to go off the meds, which I did for 3.5 years until now.
I actually found that 3 X a week was more difficult than daily however it could be because it was working so I felt better, so many unknowns with this nasty bug.
Will let you know how I go, and please do the same. Just be careful if you have a cavity you may need daily.
Yes I am starting probiotics again and buying ginger tea with licorice, if that doesn't work I will also ask for Ondansetron too.
I am definitely more informed this time thank goodness, last time it was so difficult.
Take care Heather

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@sueinmn

I don't think there is stem cell therapy available for lungs at this time.

Here is what the American Lung Association recently had to say:
https://www.lung.org/lung-health-diseases/wellness/public-health-issues-lung-health/stem-cell-therapy

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is the am. lung assn. associated with or part of the government=
like ama, fda? there is oversees stem cell that does not have the same regulations as the us. has anyone looked into this?

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@laborday24

I am going there November 18. How did you handle all the testing. I took the big 3 for two years resistant to azithromycin. Went off in may starting getting headaches. I think I made a mistake. My Mac has gotten worse. I wish I would have stayed on them or at least stopped the azithromycin but dr did not give me the option 😞

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we are the patient and we are or should be in control of our health care choices

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@jenis3

is the am. lung assn. associated with or part of the government=
like ama, fda? there is oversees stem cell that does not have the same regulations as the us. has anyone looked into this?

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Just to answer part of your question.

The lung Association is not part of government. It is a nonprofit group organized initially to fight TB and now other lung diseases. More info is at http://www.lung.org

AMA is the American Medical Association and it is not part of government either. It is a group physicians voluntarily join if they want. Here’s a link. https://www.ama-assn.org

The FDA IS a government program which was started about 100 years ago to stop the sale of mislabeled and harmful drugs and foods. Imagine needing to buy amoxicillin and the drug rep has some labeled as such, but is only a colored pill with filler and no amoxicillin in it. Before FDA, there wasn’t a way to know. We take that for granted these days. The role has expanded in years since.

As far as stem cells-we have a different political climate here than overseas. That’s all I’ll say about that.

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