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!

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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.

Sophie | @sophie1019 | Jul 28, 2016
In reply to @sophie1019 "Thanks for your response. I notice that of I take the meds one at a time,..." + (show)
@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor's order)<br>with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor's appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.<br>

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One of the test Is called CBT - Color Blindness Test and the other is called Color Blindness Test. There are a lot of different tests that you can download. I take the tests frequently, so as to keep my eyes in check............

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boomerexpert | @boomerexpert | Jul 28, 2016
In reply to @boomerexpert "I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance,..." + (show)
@boomerexpert

I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance, I was infected via my water (through the mist in the shower, most likely culprit), if I eliminate the bacteria from my water system, at least I can keep the matter from worsening. To that end, I found this from Nat'l Jewish titled "Ways to Reduce Exposure to MAC Bacteria" https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
I have as a result raised temp of the hot water heater to 135 (the level required to kill the bacteria in the hot water), and am purchasing a whole-house filtration system at the 0.2 microns filtering level they recommend for the complete filtering out of all bacteria, plus a UV cartridge that first keeps the bacteria from reproducing before they are filtered out, total cost (before installation) about $300, to eliminate the bacteria in all household water.
Hope this is helpful to all...

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Actually, we do; Docs agree that it gets into the body through some form of ingestion...eating/drinking & inhaling. Unless someone is down into soil on a regular basis while inhaling deeply (say an avid gardener), the most likely source for most folks is ingestion/inhalation of the home's water.
This is why the "Ways to Reduce Exposure to MAC from Nat'l Jewish emphasizes water treatment, the most common source of infection.
And, as I mentioned, regardless of the initial source of one's infection, re-infection through the water system is quite possible as we know it lies in most if not all US water supply. It is this I advocate preventing, at a cost (for highest efficacy whole-house filters) of less than $500.
I have RA, thus a compromised immune system, so indeed it's easier to understand how I could have been more susceptible. But regardless of the reason for "one person contracting the infection while another does not," once you have it, just makes sense to prevent re-infection through water ingestion. Nat'l Jewish seems to agree!
Oh, and I also recommend an adjustable bed...helps me tremendously to sleep more easily!

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boomerexpert | @boomerexpert | Jul 28, 2016

Actually, if doc's would put some time and effort behind seeking a more efficacious treatment, they might just find it is that easy...

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2 replies
Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @boomerexpert "Actually, if doc's would put some time and effort behind seeking a more efficacious treatment, they..." + (show)
@boomerexpert

Actually, if doc's would put some time and effort behind seeking a more efficacious treatment, they might just find it is that easy...

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Boomerexpert .. I quite disagree with you.

I have found Dr. Timothy Aksamit of Mayo Clinic, Rochester, Minnesota to be VERY committed to putting time and effort into finding and seeking out the most efficacious treatment available to me at this time .. BUT he is NOT God .. nor does he pretend to be. He is merely a hard working caring doctor doing his level best to help me.

Boomerexpert, perhaps you have not done your own due diligence in finding the very best doctor for your own personal care so that you would feel the same way about your current medical care as I do about mine. I hope you find serenity in your journey as I have found serenity in mine. Peace and serenity have a powerful effect on our health and recovery. Regards, Katherine

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heathert | @heathert | Jul 28, 2016

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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7 replies
JanetJ | @justjanet | Jul 28, 2016
In reply to @boomerexpert "I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance,..." + (show)
@boomerexpert

I've done some research on MAC/MAI reinfection, as the notion makes sense to me...if, for instance, I was infected via my water (through the mist in the shower, most likely culprit), if I eliminate the bacteria from my water system, at least I can keep the matter from worsening. To that end, I found this from Nat'l Jewish titled "Ways to Reduce Exposure to MAC Bacteria" https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
I have as a result raised temp of the hot water heater to 135 (the level required to kill the bacteria in the hot water), and am purchasing a whole-house filtration system at the 0.2 microns filtering level they recommend for the complete filtering out of all bacteria, plus a UV cartridge that first keeps the bacteria from reproducing before they are filtered out, total cost (before installation) about $300, to eliminate the bacteria in all household water.
Hope this is helpful to all...

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Thanks for all the info Boomerexpert! Can you share where you found the filter? I have been looking online but haven't found anything so it would be great to look at what you found. Thanks. Janet

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Paula_MAC-2007 | @Paula_MAC2007 | Jul 28, 2016
In reply to @mimi68 "Thank you for your response and concern. I wondered about another test that would be faster,..." + (show)
@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I'll call the office and talk to his nurse about this. Maybe there's an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

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Hello @sophie1019,
Where are you being treated in Wisconsin and who is your pulmonologist? Just wondering.
Paula

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Katherine, Alumni Mentor | @katemn | Jul 28, 2016

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an "orphan disease" which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I " put ALL my energy into what I can control .. and let go of what I cannot control". To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let's all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let's count our blessings each and every day. Go in peace. Katherine

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8 replies
Paula_MAC-2007 | @Paula_MAC2007 | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an "orphan disease" which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I " put ALL my energy into what I can control .. and let go of what I cannot control". To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let's all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let's count our blessings each and every day. Go in peace. Katherine

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@katemn, I just LOVE your reply about BIG money going into cancer treatments & cure for years. And now with the aging population, a lot more money is going into the anticipated upcoming explosion in Alzheimer's disease. So I'll take my 3 antibiotics, do my breathing exercises, get plenty of rest, think positive . . . and thank heaven I only have NTM/MAC which has been very treatable for me since 2007. Yep, I count my blessing EVERY DAY -- honest! I have very little to complain about.

Paula

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Katherine, Alumni Mentor | @katemn | Jul 28, 2016

Paula, LOVE you .. we are truly kindred spirits!! Honestly all I have to do is look around me .. just open my eyes to realize just how blessed I am .. how LITTLE I have to B---ch about!! I can hear .. I can see .. I can walk .. I can breath .. I can laugh .. I can love .. SO many things that so many others are unable to do! Ok .. so I can't do them all so perfectly now that I am 73 .. so WHAT!! SO glad to hear from you . you just keep rolling along and letting me hear your positive input from time to time. Our Forum NEEDS your positive energy!! Sending you a Big Hug! Katherine

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