(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

@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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I have been reading some of the sections online. I read allot about the 2 herbs.

I think I will get the book and do some price comparisons from sources of the herbs but want to stay with the same formulation.

Jo Ann

 

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Saw this today on the AIT Therapeutic website today on the use of nitric oxide in NTM

It started it was granted orphan drug status by the FDA
http://ait-pharm.com/press-releases/

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That is good news.  I hope they try it for the MAI pts that don’t have severe symptoms yet.  It would be nice to eradicate it before that point.

Jo Ann K

 

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@auntnanny

pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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Hi @auntnanny please keep us posted on your next sputum. Hope all is good with you,

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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Hi @tdrell did you get my question? It was about us all getting tested for pseud and other nasties yearly, as it seems we are more likely to get these things.

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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@heathert Hi Heather. Good suggestion. My doctor always had me do sputem tests every six months, and now annually. (to all) If your own doctors don’t line this up for you, you MUST be pro-active and do this for yourselves. Request it and make the appointment.

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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@tdrell, Hello Terri! My question is: Can they develope a vaccine agaist these mycobacteriums? OR Are they any closer to coming up with a compound that will bust through their biofilm, so that antibiotics will work; plus kill them at their source? If your list isn’t too long for you to post, I’d love to know what is on it. I feel like you may have come up with plenty yourself! I am sending you lots of graditude for attending this seminar. -hugs, Terri

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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Thanks @windwalker, I have not had this suggested by my doctor, will ask her at the next appt.

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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Dear windwalker,

Does your doctor do broncoscopy every year?

Nicole

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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@nick52, No, Nicole, I haven’t had a bronchoscopy since 2005. Back then; it was done to confirm MAC diagnosis and to see if anything else was going on in my lungs. I know that some doctors like to do the procedure as part of the cure. It is one way to do a cleanse and dislodge mucous plugs.

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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Dear Windwalker,

Thank you so much for your answer it is deeply appreciated. I just had one and was wondering if it was a procedure done normally.  My lung doctor seem to think it is a way to keep the lung clean and dislodge the mucous and do a lab check to verify what

he finds I think. When I saw him it was before the NAET treatment and I had mucous in my throat and some sputum depending what I was eating. After the treatment I was 80% mucus free and the broncoscopy took care of the rest of the mucus.  I haven’t had mucus

like I had last year.  The clear lungs has help to reduce the mucus and much less sputum.  How long it will last ( its been since sept. 22, ) time will tell. Hope it stays that way.  I will have my results on my next appointment in nov.  Thanks again!

Nick

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Here is a question for those going to the seminar at NJH: Is there any evidence or studies being done or even anecdotal evidence that show following the suggested guidelines to avoid NTMs makes a difference in the rate of reinfections? Jan

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@heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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Is someone using inhaling saline, do you cough? I got back from NJH and saw Dr. Huitt. she took me off the 4 meds. got me do the aerobka. They did the sputum culture and she said it will take 6 to 8 weeks. Both my lungs have bronchiectasis. Cila

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@heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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@cila, Hello Cila, I have been doing the inhaled saline for two years now. I do not cough, but that is due to an antibiotic that got rid of my pseudomonas. It apparently killed everything else that caused me to cough violently for the last 12 years also. I feel like all of us with these lung health issues should be on the saline. It is good lung hygeine. Are you doing the saline now?

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