(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

@jkiemen

@tdrell For the Lung Biopsy, I had IV sedation through the chest. I had to lay on my abdomen and they went through my back. I went to work the next day. The Nitric Oxide study in Canada was a 10 pt study. I don't know the result of it. I keep checking the web site and sending them emails for updates on the progress. The company is Ait-Pharm check https://www.centerwatch.com/clinical-trials/listings/159841/non-tuberculous-mycobacterial-pneumonia-inhaled-gaseous-nitric-oxide/

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Thats what they want to do with me im to scared

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@jkiemen

@jkiemen
This looks amazing…do you know if it's still in testing phase or for actual use. I will check into more too.
Shari

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@tdrell

@jkiemen hope you are continuing to do well after the lung biopsy….not doing anything strenuous at work and taking care of yourself….was it under general anesthetic or conscious sedation? was it thru mouth or side of chest?? How long before results come back??
As far as nitrous oxide as a treatment….there were a few cases that responded well in Israel a few years ago….I recall Dr Daley from NJH told the audience at a NTM patient workshop….the next research was to be in Canada….he seemed sorta non enthusiastic when mentioning it….this was a few years ago though…the information just shared here is more up to date l believe…
tdrell

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@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

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@tdrell Check out VAST Pharmaceuticals

Liked by Dee

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@windwalker

@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

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@windwalker
@jkiemen
Yes this would be great to have it in a powder delivery that was cost and time effective. It would be an answer to many people's prayers!
I'm still checking on how far along they are with the research.
Shari

Liked by heathert, Dee

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@windwalker

@sounder27 Hi. Click on my photo icon and read about my treatment plan. It included doxycycline and ciprofloxacin. I had a negative sputem test after 6 months on those two. I was clear of mac after 6 months on those. Then, I got MAI a yr later. Then, at 6 month testing, that was negative. Have been negative since 2014 of any mac. I did, however, get pseudomonas in 2016. Was put on inhaled tobramycin. After 30 days on that, it got rid of the pseudomonas. I have been negative for all bugs since 2016. I am on a low dose antibiotic maintenance plan to this day. It is a prophylactic (preventative) measure to treat the bronchiectasis.

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I was encouraged to hear that you are clear. However I have not taken the doxy as one of the side effects is possible loss of color vision or vision altogether and I am an artist and designer and the thought of gambling with my vision is frightening and would cost me my job. Also I had taken just 10 days of Cipro several years ago and got severe diarrhea and could not eat anything without it going right through me. That lasted for a year and a half after the cipro. I had to get tested for c diff. I am reluctant to take those meds for that reason. Has your coughing stopped as well? I have bruised ribs from coughing so hard and am in pain now. Perhaps I should weigh one awful thing against another. I am more than a little discouraged.

Liked by Dee

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@windwalker

@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

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To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

Liked by Dee

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Hi! I’m not sure if this is the same therapy but I did something called oxygen therapy at Life Works! It’s a place for natural healing. It was infusion like getting an IV. It was for Mac and inflammation and many people did it for Different diseases.

Liked by Dee

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@america

Hi! I’m not sure if this is the same therapy but I did something called oxygen therapy at Life Works! It’s a place for natural healing. It was infusion like getting an IV. It was for Mac and inflammation and many people did it for Different diseases.

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@america
Did this oxygen therapy help you?
Sharu

Liked by Dee

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@sounder27

To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

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@sounder27 Other Terri here…this is stem cell "therapy" – completely unproven, unresearched, works seldom, is not covered by insurance (as it's not effective) and very costly

Liked by Dee

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@pfists

@america
Did this oxygen therapy help you?
Sharu

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I did this 2 years ago and I also did the vitamin cocktails! I have a lot of energy with them both or maybe just the vitamins but I was tested last year and I was positive for Mac. I spent a whole lot of money on it and also for my daughter. I don’t believe I’ll do it again.

Liked by Dee

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@sounder27

To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

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@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

Liked by Dee, noahs

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@lindam272

@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

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Lindam272 Thank you for your response. I appreciate the info

Liked by Dee

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@angiejohnson

@jasmine321 I don’t know if this is my second, or if the first never really went away. I was diagnosed, treated for 2.5 years, then “clear” for 6 yrs. My right middle lobe was filled with infection and bronchiectasis. I was scared also. They usually have the chest tube in for a day after surgery. It’s uncomfortable- probably worse than the incisions, but tolerable with pain meds and muscle relaxers. I should have gone home after 2 nights. Unfortunately when the PA pulled my chest tube, air leaked under my skin and I got subcutaneous emphasema, or crepitus. They had to put a chest tube back in to suction out the air. That caused me to be hospitalized 3 extra nights. I just had to stay positive and keep telling myself this will be over soon. You can do this!

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@angiejohnson Thank you for the reply. I started the big 3 (daily) in March and today I started the Arikayce inhalation. I will keep you all informed if there will be side effects and if there will be medication adjustments.

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@jkiemen

@jkiemen Thanks SO much Jo Ann! This looks really interesting — it could be a good option, either as an alternative treatment or an adjunct to other drugs for difficult NTM bugs. And I hope it might also potentially be a good intermittent treatment or preventer in the future. Hugs and all the best, Annie

Liked by Dee

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