(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!

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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:

  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

@e345l

Jan,

With the 3 big meds as you refer to them, have you tried taking 2 early
morning, 1 an hour later, 2 at noon and 1 in the evening? I never got sick
from doing it that way.

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Thanks… I have an appt in June with a new doctor at Emory who specializes in
MAC . My previous doctor is a great diagnostic physician, but did not offer any help regarding the violent reaction I had to the BIG 3! This is the first April in 3 years I have not been in the hospital with pneumonia. I am determined to make it 5 more days!! I have been extremely careful to not be in crowds.
Blessings,
Jan in GA

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@Paula_MAC2007

Hello everyone,

For those newly diagnosed or others just plain scared about going on the meds, just remember two things: (1) without these meds, many of us would be in extremely serious trouble, and (2) if you find the meds making you so ill, you can always go off them — or perhaps there is an anti-nausea med you can take with them. Hang in there . . . it does get better!! But you DO need to take care of yourself. Sleep and exercise (to get your lungs working better) are critical. Even a brisk 20 minute walk every day will help. Much good advice on this site. Glad we’re here to help each other.

Paula

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My pharmacy dr said one of the antibiotics causes your sweat, tears, etc to turn orange. That could be the bronze skin symptom.

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I’m new to this site, was just diagnosed with bronchiectasis and MAC this month (it was found by accident when I was having a routine breast MRI and the radiologist said he saw something in my lungs and to go get a CT scan) so they have caught it in its early stages. Started the big three as of today. There’s been some great info and Katherine, @katemn, you are such a great cheerleader and coach! I am in a small town in South Carolina and I don’t have access to these great hospitals like Mayo and others and to people like the pharmacists at Mayo and I was wondering if it was possible for you to share how the pharmacists spread the drugs out. I’m on Azithromycin (one every MWF), Rifampin (two every MWF) and Ethambutol (three every MWF). I start this week with the Azithromycin, add in the Rifampin next week and the Eth. the third week. But I’d love to know how the experts say to spread them out throughout the day, and if some are with food or without,etc. I just don’t really know how to do it and was given no instructions from my doctor. I’m taking Florastor, the probiotic in the morning and at night because I found out about that from another support group of the American Lung Association…I’m not real sure how everything works on this site and if you can message people or not. Looking forward to your advice. Nan in SC

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@nannette

I’m new to this site, was just diagnosed with bronchiectasis and MAC this month (it was found by accident when I was having a routine breast MRI and the radiologist said he saw something in my lungs and to go get a CT scan) so they have caught it in its early stages. Started the big three as of today. There’s been some great info and Katherine, @katemn, you are such a great cheerleader and coach! I am in a small town in South Carolina and I don’t have access to these great hospitals like Mayo and others and to people like the pharmacists at Mayo and I was wondering if it was possible for you to share how the pharmacists spread the drugs out. I’m on Azithromycin (one every MWF), Rifampin (two every MWF) and Ethambutol (three every MWF). I start this week with the Azithromycin, add in the Rifampin next week and the Eth. the third week. But I’d love to know how the experts say to spread them out throughout the day, and if some are with food or without,etc. I just don’t really know how to do it and was given no instructions from my doctor. I’m taking Florastor, the probiotic in the morning and at night because I found out about that from another support group of the American Lung Association…I’m not real sure how everything works on this site and if you can message people or not. Looking forward to your advice. Nan in SC

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Hello Nan, hope you don’t think the below is weird .. BUT because I take various other meds I worked with the Pharmacist both at Mayo Clinic, Rochester MN as well as my local Pharmacist in putting together the below rather detailed scheduled. I just cut and pasted from my Word document rather than try to decipher it for you .. you can just take from it what works for you and “leave the rest”! Personally I rotated 3 different probiotics .. buying 3 different ones with the most billions .. that way I got various types .. in 30 months I didn’t get a single yeast infection from the 4 antibiotics I took. Hope you can make some sense of the below! It was what I had to do .. one of my antibiotics was nebulized .. the Amikacin.
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**the probiotics should not be taken for at least two hours after you take the antibiotics
SCHEDULE FOR MEDS AND VITAMINS November 2011
1. Wake up: take probiotic, Aciphex & Synthroid on empty stomach
(Aciphex-at least 1/2 hour before eating-1 hour after. Separate Probiotic from antibiotic by at least 2 hours!)
2. Wait 30 minutes: Eat breakfast .. .. take regular a.m. meds & vitamins
3. 1 puff Qvar .. rinse mouth well .. brush teeth.(SET 5 CELL PHONE ALARMS!!).
4. ONE hour later take Homeopathic remedy after nothing in mouth for one hour
5. AT LEAST THREE hours later .. take Rifampin on empty stomach.
(Rifampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour after vitamins)
*( IF POSSIBLE TAKE 2nd PROBIOTIC 2 hours after Rifampin)
6. AT LEAST ONE hour later.. take antiobiotics except Rifampin with a snack.
*OR 2 hours after Ripampin IF TOOK 2nd PROBIOTIC* (Avelox-4 hours after or 8 hour before multi vitamin with a full glass of water)
7. Six hours to Seven hours later take regular p.m. meds (Crestor &Evista) & multi vitamin & Nioxin (zinc)
after evening meal or snack. At least 2hrs (before or after) calcium, magnesium,iron or zinc.
8. Eight hours later take 2nd probiotics on empty stomach. **probiotics must be taken at least two hours after you take antibiotics
9. Nebulize Amikacin. Take nebulizer apart, clean in hot soapy water & sterilize nebulizer!
AVERAGE AMIKACIN SCHEDULE BETWEEN DAY TO DAY-try to stay same every day within 4 hours .. at least within a 12 hour period!
10. Before going to bed: take Homeopathic remedy after nothing in mouth for an hour. (as needed)
11. 1 puff Qvar .. rinse mouth well .. brush teeth.
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Nan, you will learn so much if you just read through all the posts .. a LOT of knowledge and experiences! Keep coming back to the forum .. nice people who will support you through our shared journey! Sending you Hugs!
Katherine

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Group, I just came across the most interesting article .. thought I’d share it .. pretty clinical .. BUT really filled with a LOT of good info! I learned .. and confirmed some various things! Katherine

Nontuberculous mycobacterial pulmonary infections
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949190/

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Katherine, @katemn
I don’t think your post is weird at all. I’m so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that’s my next drug to start so I will certainly try your method and all the probiotic times. That’s interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you’re drinking it on a regular basis). And thanks for the link to the article…will read that later tonight! You’re the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

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@nannette

Katherine, @katemn
I don’t think your post is weird at all. I’m so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that’s my next drug to start so I will certainly try your method and all the probiotic times. That’s interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you’re drinking it on a regular basis). And thanks for the link to the article…will read that later tonight! You’re the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

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Nan: I was positively diagnosed with MAC surgically in 2011 and I’ve never yet had any symptoms. Accordingly, 3 doctors (including the revered Dr A at Mayo) determined to NOT begin anti-biotic treatment. I am monitored regularly, and if I do get sick, we will begin treatment.

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@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics…do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics…that’s what so confusing. Nan

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@nannette

@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics…do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics…that’s what so confusing. Nan

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Nan, My understanding is that MAI/MAC can NOT be cured .. it can merely be “stabilized” .. thus the MAI/MAC IS going to present in your lungs .. BUT IF you are STABLE .. you do NOT need antibiotics. ie .. I took 4 antibiotics for 30 months .. I am now “stable” . When Dr. Aksamit lets me look at my Xray .. there are plenty of pockets in my lungs .. BUT they are stable from the last Xray .. thus I do not need antibiotics at this time.

BUT if the MAI/MAC currently in my lungs go to town and “colonies” grow .. show up in my next sputum culture that is analyzed .. DARN .. I might have to go back on antibiotics. That is why it is important to have a GOOD Pulmonologist who knows about MAI/MAC .. it is like a puzzle they have to put together: the Xrays from one time to the next .. the sputum cultures .. MRI as required .. they put this all together!

I hope this helps just a little bit! Right now I have “no symptoms” of MAI/MAC .. BUT that darn mycobacterium is certainly in there in my lungs .. just not creating/growing “colonies’ at this time that show up in sputum samples. This is my understanding of it .. I stand corrected if anyone else has a better explanation! Blessings to all!

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@nannette

@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics…do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics…that’s what so confusing. Nan

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A steady dose of 3 to 5 different antibiotics over a 18 month period can do lot of damage. As long as you are not ill, not coughing up blood, suffering from night sweats, losing weight, and generally feeling awful, most physicians will opt not to treat. It might be worth one trip to Mayo Clinic in Rochester to see what Dr Aksamit would recommend. That’s what I did. (I live on Eastern Long Island). He reassured me I was doing the right thing for myself.

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I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic! My attitude is that we are given one body in this life time .. I am willing to use my financial resources to take care of that body best I can! Good for you! Beg, borrow .. NOT steal to take care of yourself!

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@nannette

Katherine, @katemn
I don’t think your post is weird at all. I’m so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that’s my next drug to start so I will certainly try your method and all the probiotic times. That’s interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you’re drinking it on a regular basis). And thanks for the link to the article…will read that later tonight! You’re the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

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Nan, I so agree .. I just wish I’d found a forum like this when I was first diagnosed .. I was SO scared! If I’d read the past notes on this forum It would have helped SO much in gaining knowledge about our disease .. it would have made my journey SO much more serene. Frankly that is why I spend my time on the forum .. it is kind of like my form of volunteering. Can’t think of a better use of my time .. helping people on the same journey that was so scary for me! If I can help just one person it will be all worth it! Plus I am learning from everyone at the same time … win/win!

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@nannette

Katherine, @katemn
I don’t think your post is weird at all. I’m so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that’s my next drug to start so I will certainly try your method and all the probiotic times. That’s interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you’re drinking it on a regular basis). And thanks for the link to the article…will read that later tonight! You’re the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

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Kathryn, You indeed are volunteering for many appreciative people on this journey. I found a new doctor who specializes in NTM through the same volunteer efforts of a lady in Atlanta who is now testing negative for NTM!
So grateful and thankful for all of you!
Jan in GA

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Thanks @katemn and @ehliny for your experiences about not starting the drugs if you’re not really sick. This is tough because my pulmonologist, I believe is following the recommendations…like what the textbook says sort of…but is probably not as well versed on the subject as doctors in Denver and Minnesota…I’ve talked to my closest friend tonight, who is a doctor (not a pulmonologist) and she’s going to talk to some pulmonologists she knows where she is in California and I’ll guess I’ll decide by the end of this week whether to pull out. There’s this part of me, though, that says if you wait…won’t you just get sicker and then it’s harder to get rid of? Nan in SC

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@nannette

@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics…do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics…that’s what so confusing. Nan

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I do not know your whole story, but taking antibiotics also removes
the good bugs in your system, therefore leading to more problems. only
take the med for as short a time as necessary, or not if dr says do
not.

Liked by salena54

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