(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.

Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@allycatkate Hello, fyi, @aflib also does inhaled coloidal silver.

Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@nick52 What's wrong with being blue? That is a nice color. Ha! Just kidding. But, I am going to Google that and see what a blue dude looks like who isn't performing in Vegas.

pfists | @pfists | Jun 20, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@flib
Was it your pulmonologist that was all for the nebulized silver? Did he/she have any recommendations for the kind or dosage? I plan on running it by my pulmonologist next week just to see if he has heard of it.
Have you considered doing antibiotics the way Terri is rotating one every month.
But not using the Zithromyacin.
Just hearing how tired you are thought maybe worth a try.
Shari

Flib | @flib | Jun 21, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

Shari, My pulmonologist didn't recommend c.silver. She just said to be careful of the dosage. There really is no research by pulmonologists that I am aware of. I put about 3 drops into my saline solution. Zithromyacin was the only antibiotic that proved effective with my case of mac so there was no question of rotation. I took it three times a week for about half a year and then one day, that quickly, I lost a lot of hearing in my left ear and my doctor took me off it and said there was not much else she could do for me. She's a good doctor and I like her. I've had mac for at least ten years and I may have had it prior to that diagnoses. I'm going to have another c. scan this summer and will let post the results. I don't think anyone should follow my example. I think we all pretty much know by now that a lot of what we do is self directed.

Jo Ann K | @jkiemen | Jun 21, 2018

@flib Then we should try to get the company developing inhaled nitric oxide to do compassionate use for their protocol. They use inhaled nitric oxide for pulmonary hypertension so why not give it a try.

Jo Ann K | @jkiemen | Jun 21, 2018

@flib It would be off-label use, but allot of meds are used off-label. Insurance coverage would be the hardest issue.

alleycatkate | @alleycatkate | Jun 21, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@flib ...So no results from Colloidal Silver that you could discern after 6 months? Wish we had more info on it with MAC but good to hear about your experience. I've seen several posts on this site about loss of hearing from the big 3 so it would be my guess the hearing loss was from that, not silver. Would you agree?

pfists | @pfists | Jun 21, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@flib
I understand you don't have much to work with regarding antibiotics then. Keep us informed on how you feel the silver is working, there are others that feel antibiotics are not an option for us either.
My mycobacteria Abcessus went from positive for over a year to testing negative the last year and a half and I didn't use antibiotics.
I see a naturalpathic Dr, he is great he has me on lots of different natural things.
Hoping the silver works well for you.
Seems the antibiotic route isn't so great either because MAC comes back so many times and could come back stronger and more resistant then before.
Hoping for the best for you!
Shari

pfists | @pfists | Jun 21, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

This caught my eye in a email from
"Amazing Health Advances" today.
Regarding vitamin A supplementation in protecting from TB
I will be sure to supplement with vitamin A now. If you don't want a purchase another supplement eat lots of carrots, yellow squash, sweet potatoe or greens.
http://www.amazinghealthadvances.com/words/display_art.php?ID=2573

alleycatkate | @alleycatkate | Jun 21, 2018

In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)

@windwalker ...Blue is nice. The blues men in Vegas usually wear their blue suede shoes, to match their blue hued skin. Silly, sorry. 🙂 Thanks for the heads up on flib with colloidal silver...Just saw her post that she nebulized it for 6 months. Checked on Dr Leventhal at Mayo ...Mayo does not accept my insurance and they do not allow self pay so I am waiting till Jan. In the mean time, full "steam' ahead with the nebulizer and other remedies. Leventhal did say that ALL of us with MAC should nebulize?? (Sorry...just Double checking).