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.

sissir10 | @sissir10 | Jun 25, 2023
In reply to @regen99 "Would Mayo assist you in making this contact? Karen" + (show)
@regen99

Would Mayo assist you in making this contact?
Karen

Jump to this post

I'd love to go to Mayo here in Jacksonville, but starting January of this year, they no longer take any Medicare Advantage plans. So, I'm screwed.

REPLY
2 replies
gjaleski | @gjaleski | Jun 25, 2023
In reply to @regen99 "Would Mayo assist you in making this contact? Karen" + (show)
@regen99

Would Mayo assist you in making this contact?
Karen

Jump to this post

Mayo requires that the initial visit be in person, even though I have IPF and any exposure to Covid (flying, hotels, restaurants, etc.) is life threatening for me. The only thing they might do in person is use a stethoscope. I am at the University of Washington medical center, which should suffice for Mayo. Strange requirement that excludes the most ill and financially unable to travel.

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regen99 | @regen99 | Jun 26, 2023
In reply to @sueinmn "I don't know, Mayo is not part of this phage research as far as I know,..." + (show)
@sueinmn

I don't know, Mayo is not part of this phage research as far as I know, but here is how to contact them to find out:
http://mayocl.in/1mtmR63
Sue

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very interesting. How did you find out about the phage therapy? I printed the
report and read it carefully. It appears
to be carefully and respectfully researched, and moreover takes an
enlightened and respectful ecological view of all the organisms involved. Rare!

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Rick | @rstel7272 | Jun 26, 2023
In reply to @gjaleski "I am in the care of a good pulmonologist, who agrees on wait and CT track..." + (show)
@gjaleski

I am in the care of a good pulmonologist, who agrees on wait and CT track my condition for the time being.

I have had IPF for five and my FVC is almost normal, but my Dlco is 45%

My last CT showed no fibrosis progression and slight MAC 4.3 cm cavitary change.

I feel perfectly normal except for limited Spo2 response. I have almost no phlegm discharge and no cough.

Thanks for the research citations. I also found the same material. No one seems to add to the information. What about all the cavitary MAC patients who cannot tolerate meds. What can they expect?

I was diagnosed with MAC a year ago. It took months to get a robotic bronchoscopy to confirm Mac, and not cancer.

I am 82 so my time-line may be different from a younger person.

I am researching possible bacteria phage therapy. So far it looks to be impossible to get phage treatment unless you fail all other treatments, even if the side effects are life altering. Meanwhile, I cannot find a single report of any ill effects caused by phage therapy. Usual idiocy.

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I sound just like you but I just turned 65 but I am now negative for MAC but positive for aspergillus and thus on voriconazole.

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healthybon | @healthybon | Jul 17, 2023
In reply to @fdixon63 "My usual airway clearance is twice a day 7% SC, once with aerobika attached. Exercise has..." + (show)
@fdixon63

My usual airway clearance is twice a day 7% SC, once with aerobika attached. Exercise has gone by the wayside because of the heat. I tried postural drainage but it's too much because of my GERD. I've never thought of using the aerobika alone. Is it that useful? That would be great for travel--could do in a car. I also take NAC 600 mg twice a day. I've seen it posted that many use Mucinex. Do you use it all the time or just when there is exacerbation? Is that doctor recommended or just OKed? Would Mucinex be good to take at bedtime or late afternoon so could get stuff up before going to sleep or use in AM. Gosh, I have a lot of questions.
You are my Guru Sue. Thanks much to @egayle187 as well.
@fdixon63

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The NJH recently told me not to do postural drainage if you have Gerd…

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healthybon | @healthybon | Jul 18, 2023
In reply to @sissir10 "I'd love to go to Mayo here in Jacksonville, but starting January of this year, they..." + (show)
@sissir10

I'd love to go to Mayo here in Jacksonville, but starting January of this year, they no longer take any Medicare Advantage plans. So, I'm screwed.

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That’s terrible. Neither does NJH. I have to try for financially needy application….the list of documents they want is daunting. My Aetna Medicare PPO pays part of out of network…if you have a PPO yours might. Call your Ins co I have to pay 30%. Blood out of stone…….

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healthybon | @healthybon | Jul 18, 2023
In reply to @sissir10 "After 13 months on the cocktail of drugs, I started to get sick with flu like..." + (show)
@sissir10

After 13 months on the cocktail of drugs, I started to get sick with flu like symptoms. One time was admitted to hospital for 10 days this year in May. NOBODY would listen to me about how the drugs were making me sick. Not even the ID doctor who put me on them. I came home and stopped taking them. Demanded a phone conference with the ID doctor instead of office visit, as I was too weak to go. He was VERY RUDE to me. Told me to start taking the drugs individually on different days to find out which one was the problem. On June 8th, I took the Rifampin. 2 1/2 hour later, I had the shakes and fever with Oxygen level of 79 and elevated heart rate. 911 was called. They started working on me and transported me to a different hospital. Doctors at this hospital have pulled me off all of the drugs. They said the MAC is gone and there is no need for them and they will monitor me for it. The other ID doctor had told me in February the MAC was gone, but wanted to leave me on the drugs until August. Long story short, Doctors need to listen to their patients and take what they say seriously. That ID doctor could have killed me.

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That’s horrendous. I KNOW those meds would annihilate me..I can’t even take amoxicillin for two days….I would have no quality of life.

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harrynsc | @harrynsc | Jul 19, 2023
In reply to @sissir10 "I'd love to go to Mayo here in Jacksonville, but starting January of this year, they..." + (show)
@sissir10

I'd love to go to Mayo here in Jacksonville, but starting January of this year, they no longer take any Medicare Advantage plans. So, I'm screwed.

Jump to this post

Medicare Advantage is a scam that cost the taxpayers more
per patient than original Medicare. Congress was hoodwinked by the lobbyists.
They deny a lot a referrals, some twice. Pay doctors a little,
so a lot of them drop out. Then they give you some "free"
stuff, such as minor dental coverage or a debit care for
drugstore stuff. Several years ago, the guy on the phone
said my doctors were covered. (Seven) After I signed
up, only one was covered so I got out after a month.
Read the article below and then do more research.
Harry
https://www.thenation.com/article/politics/its-time-to-end-the-medicare-advantage-scam/

REPLY
1 reply
rosnat | @rosnat | Jul 19, 2023
In reply to @unicorn "Hi Jill: I remember that tiredness. I would get up in morning, have breakfast and then..." + (show)
@unicorn

Hi Jill: I remember that tiredness. I would get up in morning, have breakfast and then go back to sleep! So unhealthy. I drank a little coffee, and just kept walking my dog, so at least I was doing something. I remember having to eat more bread and pasta to try to gain weight, but I got kind of skeletal. After awhile even the probiotics did not work, food just moved through system too fast. I am off pills now as MAC kept coming back, using aerobics and nebulizer. My infectious disease doc At Massachusettes General wants to put me on antibiotics every day , but I think they will kill me, so I have to have a conversation with her. It's a process, we have to try everything. Nothing seems to work 100% Try this, then try that, talk to your docs A LOT, find out alternatives. Stay on this site for tons of info. xo Christa

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I was just diagnosed with Mac lung disease, looking at the lab report I see also klebsiella oxytoca which doesn't sound to good either. My Dr. tells me I will start on 2 different antibiotics a day for 2 years. I am already exhausted and very uncomfortable with pain all over. I was wondering if anyone else also has this second diagnosis of Klebsiella oxytoca? They both seem to be bacterial infections but at the same time my ANA went through the roof. I would appreciate anything anyone can tell me about these conditions and what to do to minimize the effects of these antibiotics. I am 73 but still work and would love to be able to function especially since it is such a long treatment time. I appreciate anthing you can tell me.

REPLY
AZ | @equanimous | Jul 20, 2023
In reply to @harrynsc "Medicare Advantage is a scam that cost the taxpayers more per patient than original Medicare. Congress..." + (show)
@harrynsc

Medicare Advantage is a scam that cost the taxpayers more
per patient than original Medicare. Congress was hoodwinked by the lobbyists.
They deny a lot a referrals, some twice. Pay doctors a little,
so a lot of them drop out. Then they give you some "free"
stuff, such as minor dental coverage or a debit care for
drugstore stuff. Several years ago, the guy on the phone
said my doctors were covered. (Seven) After I signed
up, only one was covered so I got out after a month.
Read the article below and then do more research.
Harry
https://www.thenation.com/article/politics/its-time-to-end-the-medicare-advantage-scam/

Jump to this post

Thank you so very much. Exactly what they are saying happened to me. Kaiser would not provide a referral for 2nd opinion for my MAC/BE, despite the fact Kaiser has NO experts in these conditions. I was told, if I had Medicare it would have been covered. But since I had the advantage plan, I had to get permission from my dr who gave me some cockamamie excuse as to why it was not allowed. Your article sealed the deal...I am dumping the advantage plan!

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