1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Brenda R. | @brigby | Jun 30, 2019
In reply to @anniepie "Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot..." + (show)
@anniepie

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

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@anniepie Thank you!

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jasmine321 | @jasmine321 | Jun 30, 2019
In reply to @sandykayhud "Thanks for your response. Was your loss of voice for a prolonged period of time? I..." + (show)
@sandykayhud

Thanks for your response. Was your loss of voice for a prolonged period of time? I am already having lots of voice problems due to damage to my esophagus from radiation treatments. I have had speech therapy and my voice still comes and goes. So you can see why I am hesitant about the side effect of the Arkarice. Are you still negative for the MAC? Thanks for the help....Sandy

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@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.

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2 replies
sandykayhud | @sandykayhud | Jun 30, 2019

Thanks for the info. I am hesitant about taking the Arikayce because I am already battling voice problems as a result of radiation damage to my esophagus.
Let me know the name of the other med if you find out. The big 3 for 2 years did get rid of the MAC for a period of time but has returned. Your info has helped me alot...thanks and God bless you in your treatments.

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1 reply
Jo Ann K | @jkiemen | Jul 1, 2019
In reply to @jasmine321 "@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my..." + (show)
@jasmine321

@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.

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Is it Clofazamine

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suzyqueue | @suzyqueue | Jul 1, 2019
In reply to @jasmine321 "@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my..." + (show)
@jasmine321

@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.

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The hoarsness lets up after a couple/few weeks. Also it helps to do the treatment before bed immediately after your albuterol treatment. That way your vocal chords are resting and you aren't using them. So far hoarsness isn't a side effect I'd be concerned about with the success this treatment has had. I was hoarse for a couple weeks but now I'm not.

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1 reply
ling123 | @ling123 | Jul 3, 2019

Just came across this article and remembered that some members on this site have mentioned that they are taking Cipro. https://www.webmd.com/drug-medication/news/20190208/fluoroquinolones-over-prescribed-despite-dangers

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2 replies
pfists | @pfists | Jul 3, 2019
In reply to @ling123 "Just came across this article and remembered that some members on this site have mentioned that..." + (show)
@ling123

Just came across this article and remembered that some members on this site have mentioned that they are taking Cipro. https://www.webmd.com/drug-medication/news/20190208/fluoroquinolones-over-prescribed-despite-dangers

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@ling123
Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe it's the fluoride in it that makes it so toxic. I suppose that's the part that makes it effective against pseudomononas and mycobacteria. They need to come up with better alternative drugs.
Shari

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2 replies
migizii | @migizii | Jul 4, 2019
In reply to @pfists "@ling123 Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe..." + (show)
@pfists

@ling123
Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe it's the fluoride in it that makes it so toxic. I suppose that's the part that makes it effective against pseudomononas and mycobacteria. They need to come up with better alternative drugs.
Shari

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What do you say to your doctor you will take?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2019
In reply to @migizii "What do you say to your doctor you will take?" + (show)
@migizii

What do you say to your doctor you will take?

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@pfists and @migizii i I have been taking cipro every other month since 2013 with no side effects.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2019
In reply to @ling123 "Just came across this article and remembered that some members on this site have mentioned that..." + (show)
@ling123

Just came across this article and remembered that some members on this site have mentioned that they are taking Cipro. https://www.webmd.com/drug-medication/news/20190208/fluoroquinolones-over-prescribed-despite-dangers

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@pfist & @ling123 Hi Ling! Thank you for posting this link. I found the article interesting. I hope that my long term use of cipo doesn't end up harming me. I do want to point out that the article mentions several times that the adverse side effects are RARE. It also says scientists BELIEVE that serious adverse side effects were caused by the flueroquilones (cipro, levaquin, etc.) 'Believe' and actual case studies are two different things. There are doctors out there over-prescribing with these drugs, but any good doctor knows when the risk outweighs the benefits. I feel like I'd rather take my chances with cipro than have mac continue to eat away my lungs. I do want to look into the hidden side effects of these antibiotics. I have noticed a lot of leg cramping and almost total loss of hand strength. I just chalked it up to age (60 yrs) and cramping due to dehydration.

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