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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@jengelage No problem, I am happy to share. My doctor does not believe in treating mac with the BIG 3 antibiotics. He said it is 'Old School' treatment. He reserves that plan for the severely& repeatedly infected. My treatment plan has been alternating months, 10 days each month. Ten days on doxycycline and the following month, 10 days on ciprofloxacin. 2 x a day for both. He said that patients that have both brochiectasis and mac need to be on a maintenance of alternating antibiotics as a prophalxis. He said, at least in my case, that I will always be at risk for re-infection. He does feel like the Big 3 antibiotic cocktail is overkill and can be toxic. Now, doctors tend to differ on this. At this point, there is no definitive at what is best. I never went on the big 3, and I test negative now. This would be a good discussion to have with a Mayo doctor. I have found from experience that most private practice doctors are not really up to date with knowledge about this disease. I hope this helps. Please, if you don't mind, keep us in the loop and share what you've learned. Will you be seeing a Mayo dr soon?
@cila, I had that happen every time I ate bread or any other kind of food that contained gluten. Try to avoud gluten for awhile and see if the mucous doesn't let up. I couldn't eat bread or gluten for most of my life. I can eat it now. I don't know what changed except that I have been on antibiotics since 2013.
@killalea Hi there. Did I fail to welcome you to the group when you first joined us? If so, I apologize, and wish to welcome you now. I am glad that you have been reading our posts and gathering info about living with mac. Knowledge is power! Have you learned any more about your infection from your doctor? We are here for you!
So are you saying windwalker that cipro and doxycycline cured you of MAC, and that is why you are on them prophylactically? If that is what you are saying, I am extremely interested because the Big 3 is/are so very toxic for me. Thank you. Irene
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1 ReactionThank you for your response. I have a similar diagnosis, but so far am being treated with nebulizer with a salt solution. Interesting to the different approaches to the same diagnosis. The Big 3 treatment effects seem to be worse than the disease as long as the person is not experiencing severe symptons.
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1 Reaction@unicorn a quick respond for palpitation. I have those since age 28. I read that it could be a lack of calcium magnesium. Since i take calcium magnesium and my Q10 or L-Carnitine I have no more palpitation. You may want to read about it on the internet or
Dr Balch Nutritional healing book! This is an Alternative for palpitation. Hawthorn berry is also good for heart disfunction. Nick
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1 Reaction@irene5 Yes, Irene, that is what I am saying; although we are never really 'cured'. We are suseptible to getting it and will likely get it again some day. I have been on this regimen simce 2013. It does work for me, but just know, what works for one person may not work for others. Everyone with mac needs to get a suseptibilty test done on their sputem samples.
@jengelage Hi. I am glad to know that you are doing the nebulized saline, I do that too. It does make a big difference in keeping our lungs clean. Are you doing it twice a day?
@irene5 A doctor tried to put me on the Big 3 in 2005, but I refused them because of the toxicity. I was treated with zithromax for several weeks and I got better for a time. Better, mind you, not cured. I stayed sick from that point until 2013. During those years, I was like someone with emphysema. I had good days and bad days and very bad weeks. It wasn't until the doxy/cipro treatment that it cleared out. While on it, I did catch pseudomas. That was treated with tobramycin for 6 alternating months. It was alternated with cipro. For some reason, that seemed to be MY magic bullet. All coughing ceased after that. I emphasized 'MY' because Katherine tried it and she said she had a bad reaction to the toby. But, at that point she was already fully consumed with klebsiella, and serratia marcescens (hospital borne pneumonia type bacterias). You can ask your doctor about the regimen I am on and have your next sputem test tested for suseptability to doxy and cipro. Some members have stated that their drs do not approve of my doctor's method. I think it could be for several reasons. One, they don't know about it, or Two, doctors just have differing opinions how to treat this allusive disease. It is worth a discussion with your dr at least. This method comes from my Mayo pulmonplogist. Mayo doctors are cutting edge and worldwide respected. Plus, I am proof that other methods work. I would be intetested in knowing what your dr thinks.
Yes, 2X a day. No meds right now.
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