(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

I am glad you are not on them. Mine unfortunately kept expanding its home base and has not been a good tenant so we decided to evict them! Tis a long grueling process, but they were taking up way too much lung space and causing me bodily harm!

REPLY

No doubt I’ll be there someday…perhaps soon…sigh…

REPLY
@boomerexpert

No doubt I’ll be there someday…perhaps soon…sigh…

Jump to this post

@boomerexpert , Let’s hope it’s not soon! Are you feeling alright?

REPLY

@joan912, Hi Joan! That was an interesting article. I haven’t looked up the treatment guideline of the British Thoracic Society yet. The article seemed a little oxymoron to me when it states there should be guidelines to adhere to in treatment plan, but then states doing gene sequencing in order to do individualized treatment. That is what I hate about this disease! Nobody can agree on the proper way to treat this! I feel like I cannot guide anyone in the way of what treatment they should get, (not that I should be doing that), because I don’t even know myself. It is so frustrating! Also, I wondered if Japan’s MAC incidence is highest because they use public baths? I was there 7 yrs ago and went to a public bath, and they had like seven or eight different kinds of baths to get into, and you could go from tub to tub. Just a thought. Thank you for contributing that article. Did you look up the British treatment guidelines?

REPLY

@windwalker yep…feeling good! And you?

Liked by heathert

REPLY

Though this is treatment for TB, I can see that it would have usage in treating MAC: http://indianexpress.com/article/lifestyle/health/new-substance-may-help-combat-tuberculosis-5004271/

Liked by heathert

REPLY
@joan912

Though this is treatment for TB, I can see that it would have usage in treating MAC: http://indianexpress.com/article/lifestyle/health/new-substance-may-help-combat-tuberculosis-5004271/

Jump to this post

That would be wonderful! Thank you for sharing that info.

Liked by heathert

REPLY

Hiya I have also read about 6% acetic acid for 20-30mins for some of the mycobacteria but not others,I guess we just need to make sure the information is from an experiment on a reputable site. So much info out there, hard to know which is correct, to be on the safe side I will go for 10 for now. However I also am concerned about killing all the good bacteria which keep the bad in check. Confusing!

REPLY
@joan912

Though this is treatment for TB, I can see that it would have usage in treating MAC: http://indianexpress.com/article/lifestyle/health/new-substance-may-help-combat-tuberculosis-5004271/

Jump to this post

Wow, now we have to wait until it gets through clinical trials. I hope that they start soon and put in on a fast track. We all need to keep watching for these things and keep telling out MD’s

Liked by heathert

REPLY
@heathert

Hiya I have also read about 6% acetic acid for 20-30mins for some of the mycobacteria but not others,I guess we just need to make sure the information is from an experiment on a reputable site. So much info out there, hard to know which is correct, to be on the safe side I will go for 10 for now. However I also am concerned about killing all the good bacteria which keep the bad in check. Confusing!

Jump to this post

If you are worried about bacteria take probiotic to replenish your “flore bacterienne” it is a safe way. To be  safe take it few hours in between treatment.  Check Dr Balch book!

Liked by heathert

REPLY
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don’t mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

Jump to this post

Sorry boomexpert but I can’t find that envelope icon lol

REPLY
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don’t mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

Jump to this post

@nick52, Here’s how to send a private message:
1. Click on the member’s name.
2. Click on Send Private Message.
3. Write your message.
4. Click Send message.

Bbonne année et bonne santé pour 2018!

REPLY
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don’t mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

Jump to this post

Ditto that to everyone! Maybe this time next year there will be a more tolerable and permanent cure for us!

Liked by heathert

REPLY
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don’t mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

Jump to this post

Oh yes please!

REPLY
Please login or register to post a reply.