(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!

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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:
- 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.

anniepie | @anniepie | Nov 29, 2019

In reply to @windwalker "@tdrell and @boomerexpert The Mayo doctors agree that Vitamin D makes a big difference in lung..." + (show)

Hi to both Terris @windwalker and @tdrell. Recently I read that high dose vitamin D can also boost the 'natural antibiotic' -- cathelicidin -- that the lung's macrophages produce. This helps to kill off mycobacteria.
(Mycobacteria often live inside the macrophages in our lungs. Cathelicidin is produced in macrophages to kill off bacteria -- it's an important part of the immune system. People who succumb to MAC MAI don't produce enough natural antibiotic inside their macrophages).
High dose Vitamin D once every 2 or 3 months is something I want to try. Thanks for reminding me, Annie

boomerexpert | @boomerexpert | Nov 29, 2019

@anniepie is the high dose D given as an infusion?

kathyhg | @kathyhg | Nov 29, 2019

What would a high dose be if one was taking vitamin D orally instead of a periodic IV?

fdixon63 | @fdixon63 | Nov 29, 2019

In reply to @windwalker "@tdrell and @boomerexpert The Mayo doctors agree that Vitamin D makes a big difference in lung..." + (show)

Hi. What is a recommended dose of vitamin D? I'm taking 125 mcg a day at bedtime? I've taking it for a number of years. Not sure the reason I started taking it but sounds like it was a good thing to do.

pfists | @pfists | Nov 29, 2019

@kathyhg
@fdixon63
I take 5000 mg of D3 daily
You can and should have your blood levels checked yearly by your Doctor. Most people are low but if you take it you get too much in your system it can be toxic.
People like myself that live in north in the winter months can be deficient because you get a good dose when you can get out in the sunshine.
Shari

kathyhg | @kathyhg | Nov 30, 2019

Thanks. I take 4000 mg of D3 a day; I had my blood level taken in the spring and was right on the bottom edge of the normal range. That’s when I increased from 3000 to 4000. I’m in Canada and we have very grey winters so I’ll talk to my doctor about going up to 5 for the winter!

anniepie | @anniepie | Dec 2, 2019

In reply to @kathyhg "What would a high dose be if one was taking vitamin D orally instead of a..." + (show)

Hi Kathy @kathyhg and @boomerexpert. The study I read was preliminary research and the single dose of vitamin D3 would translate to around 100,000 iu only ONCE every 2 or 3 months (= 2.5 mg or 2,500 mcg once every 2 or 3 months).
Safety and any side effects would need to be investigated further, but if it's a single dose taken once every 2 or 3 months it seems the single dose can safely be higher than that (see for example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4128480/).
You can get doses of 10,000 iu in capsules or tablets online. But you should probably only do this with guidance from a doctor, I think.
Here's some relevant studies:
https://www.ncbi.nlm.nih.gov/pubmed/17463418/
https://www.ncbi.nlm.nih.gov/pubmed/23331510
https://www.ncbi.nlm.nih.gov/pubmed/21419266
https://www.ncbi.nlm.nih.gov/pubmed/21133662
https://www.ncbi.nlm.nih.gov/pubmed/20067648
https://www.ncbi.nlm.nih.gov/pubmed/20557314
https://www.ncbi.nlm.nih.gov/pubmed/22589721
https://www.ncbi.nlm.nih.gov/pubmed/18602003
https://www.ncbi.nlm.nih.gov/pubmed/19748462
After I finish my TB meds I want to try it to help my immune system. I was planning to look into it more then.

Terri Martin, Volunteer Mentor | @windwalker | Dec 2, 2019

In reply to @anniepie "Hi Kathy @kathyhg and @boomerexpert. The study I read was preliminary research and the single dose..." + (show)

@anniepie Everyone I know who has seen a dr lately has been told to supplement with vitamin D. Everyone is being told they are deficient. My dr has told me the same.

boomerexpert | @boomerexpert | Dec 2, 2019

In reply to @anniepie "Hi Kathy @kathyhg and @boomerexpert. The study I read was preliminary research and the single dose..." + (show)

@anniepie thanks for the info,,,so,,,you take it in pill form?

fdixon63 | @fdixon63 | Dec 3, 2019

Need clarification on dosages of Vitamin D3. I started taking it many years ago (on my own) and don't ever recall having my levels low and can't remember why I started taking it. I had not been diagnosed with MAC/NTM at the time. That DX came about earlier this year. Anyway I take capsule form 5000 IU (125mcg). I noticed a lot of talk of taking in mg amounts. Is that a prescription D3 and are there options to get it injected??? Just want to get it straight. Thanks to the group. So much good information.