(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.

pamelasc | @pamelasc1 | Feb 25, 2017

In reply to @katemn "@ginak Gina, this is just me .. but I think I would definitely NOT get a..." + (show)

@katemn

@ginak Gina, this is just me .. but I think I would definitely NOT get a water cooler! See the below info if mycobacterium is your concern. When I went to a lot of trouble putting in a 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System in my kitchen sink .. I took all the particulars including pictures to my appt with Dr. Aksamit. He IMMEDIATELY pointed out the problem point .. the faucet .. pointing out no matter how carefully I filtered the water "biofilm" would build up on the interior of the faucet. He also followed up with this message to me: Truthfully I do not regret installing it .. it may NOT be perfect but I still think better than the tap water??

Hello Katherine,
Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.

Gina, I personally have chosen to install the 0.2 micron filters shower heads .. they are costly and must be changed frequently so it is on a shower that only I use. I have on the Forum how to purchase them if anyone is interested. Hope the above information helps someone.

Jump to this post

This is Pamela asking a question about MAC and water: has anyone who now has special filters for their shower heads and kitchen sink, etc. had the water from their taps tested for MAC ? Should all of us assume that MAC could be coming from the pipes AND the actual water? I would think that the first thing to do to rule this out is to test the water so I wonder if anyone did that. Pamela

pamelasc | @pamelasc1 | Feb 25, 2017

In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)

Hi Steve - I personally have not have serious side affects with the meds, but some people really struggle in the beginning - it gets better with time. There are a lot of posts to do with how best to take the meds to avoid problems and supplements to also take which help. I will be done with my 18 months of meds the end of April and after that will have to have the sputum tested. I came down with pseudemonas after being 2 months in on the MAC meds and that really brought on a very bad and productive cough - once I got on the antibiotic for that, the bad cough went away, as did the pseudemonas. Pamela

Katherine, Alumni Mentor | @katemn | Feb 25, 2017

In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)

@maryjo2sell, Mary Jo, thank you SO much for your reply. I just had a gut feeling about that Ebay product .. you know the old saying "you get what you pay for"! I just didn't feel right to have to go to the MAX setting. I thank you for your response! We now have GOOD info for our Forum .. buy from AEROBICA directly from: https://www.monaghanmed.com/Aerobika !!

Mary Jo, PLEASE do keep us posted on your Mayo news .. hmmm what will be .. will be right?! Sending you a hug! Katherine

beatitnow | @beatitnow | Feb 25, 2017

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

hishamhussain | @hishamhussain | Feb 25, 2017

i hope this helpful @katemn
http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac

maryjo2sell | @maryjo2sell | Feb 25, 2017

In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)

I feel badly that your Aerobika may not be working properly since I suggested ebay. Mary jo

steve1948 | @steve1948 | Feb 25, 2017

In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)

thank you Pam, IF I do have MAC I guess I'd just as soon deal with what comes with the meds than cough like I do.

boomerexpert | @boomerexpert | Feb 25, 2017

In reply to @katemn "@ginak Gina, this is just me .. but I think I would definitely NOT get a..." + (show)

@katemn

Jump to this post

I believe research shows the mycobacterium to be in water and soil...and that it can reproduce in the plastic lining of pipes, fridge ice/water makers, etc. NJ recommends a 0.2 micron filter for whole house to keep 'em out at the source...I've gotten one for my home but it is expensive as are the replacement filters. My hope is that as microbe-free water continues to flow, over time all of 'em will be eliminated from my pipes, etc. But if that is to happen, only a whole house filter will do it, @.2 microns.

wandering | @wandering | Feb 25, 2017

In reply to @jentaylor "Hello all, I am very curious & I'm wondering if any of you know if you..." + (show)

We do not have the lung issues most of you have on this forum. However, we have been using a Berkey water filter for about 4 years. I would suggest you Google their website and determine if this would be useful for you. The unit we have is portable - we are snowbirds and move it back and forth as well as take it on camping and traveling trips. The unit retails for about $300 but the filters last for about 5 years, depending on the amount of water you use. Not sure but they may have something for the shower also. Just an idea - we have no financial investment in the company - we just love their product and feel good about using it. Best wishes on your journey.

Katherine, Alumni Mentor | @katemn | Feb 26, 2017

In reply to @jentaylor "Hello all, I am very curious & I'm wondering if any of you know if you..." + (show)

@wandering, thank you for your input but I would caution our members to read back pages to read what Dr. Aksamit told me about biofilm being created even on the faucet .. sad but true. We just have to be so very careful about those sneaky darn mycobacterium critters! Hugs to all! Katherine

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