1. < MAC & Bronchiectasis

NTM/MAC/MAI: We must advocate for ourselves

Posted by boomerexpert @boomerexpert, Aug 16, 2016

Throughout the US & its territories, a total of 8580 people are infected with Zika, a virus that is easily prevented and does not harm adults - it can cause birth defects in unborn children of infected people, but that can be prevented. The US is spending hundreds of millions of dollars to search for a vaccine.

In contrast, 1 of every 100,000 people (not including people with HIV) in the US are diagnosed with some form of NTM, most prevalent is MAC/MAI, and that figure is increasing. Under "NTM Facts, A Growing Problem" (https://www.ntmfacts.com/prevalence), here's a few alarming statistics:
"Currently, there are an estimated 86,000 cases of NTM lung infections in the US, and that number continues to grow more than 8% in prevalence every year. (with no requirement to report NTM infections as there is for TB, most researchers believe the number is far higher).
With the rise of NTM infections, data has shown that NTM is now more prevalent than TB in the US...it has been found that incidences of NTM are increasing while TB is decreasing around the US. ...The rates of NTM infection are increasing in patients aged 65 and over, a population
that is expected to double by the year 2030."

The infection went from one considered as opportunistic (effects mostly those who are very compromised, like the HIV infected) to one that has now invaded the general population.

Yet, by all research and medical standards, treatment with first 2, and now 3 (and in some cases 4) extremely powerful antibiotics is grueling (side-effects similar to those experienced with chemotherapy) thus difficult (for some impossible) to sustain as it must be taken 3X/day for at least 1 year, thus its effectiveness as a cure in many patients is spotty; for an increasing number it can only manage the infection, causing them to be on strong antibiotics for the rest of their lives.

In essence, the bug has become more prevalent (and perhaps stronger), and the medical community's response has been minimal research to ID current antibiotics that may work better than others, then increase the number used to treat it rather than find more appropriate treatments designed to kill this particular bacteria. Exacerbating the problem is the medical conundrum that taking these medications orally has a reduced impact on this infection deep in the lungs. Most researchers agree that the best solution is something that can be introduced directly to the lung via aerosol or inhalant.

Over the past 18 years, no significant research beyond that mentioned above has been conducted to find a more effective cure. The only clinical trial conducted over the past 5 years for an inhaled treatment, Amikacin, is generally being tested on those who have already failed traditional treatments, thus not supplanting them.

I believe that patients who endure the impact of this medical vacuum must push for more research, and better treatments, not just more clinically effective, but with far less side-effects. We can start by contacting top research facilities for this condition (U TX, National Jewish, Mayo Clinic, and the NIH, FDA) asking for more research. We can also talk with our physicians about better treatments, asking them to push for more research. Finally, we can continue to search for, and share, information on clinical trials for new NTM treatments, and our ideas for treatments that could work.

If these facilities continue to hear from a great number of people suffering from this insidious infection, it may have the "squeaky wheel" effect. Most assuredly if we remain silent, willing to trudge along with the existing treatments without asking for something better, we are likely to get nothing better.

I believe patients themselves can have a great impact on improving research. But...only if they hear from us.

Thoughts? Ideas?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

heathert | @heathert | Jan 16, 2017
In reply to @kaystrand "Heather, My list is short. Both parents had Tuberculosis before I was conceived, I did take..." + (show)
@kaystrand

Heather, My list is short.

Both parents had Tuberculosis before I was conceived, I did take hormones for peri menopause. I am 5'9" and have always been thin. Thyroid issues. That's it, was very healthy till I got pneumonia a few times in my 60s and then MAC!

Did I put this info in the right place? Who is collecting this data? Good idea.

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Hi @kaystrand I was talking to a lady the other day with lung problems whose mum had had TB before she was born also, I wonder it that does have something to do with it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 18, 2017
In reply to @boomerexpert "I'm asking anyone who has provided info that better helps us to advocate for ourselves, from..." + (show)
@boomerexpert

I'm asking anyone who has provided info that better helps us to advocate for ourselves, from the idea of creating a national registry of confirmed cases being considered at NJH to your list (which I haven't seen but am sure is great!) on this site so we have one repository for all advocacy efforts & info. So, yes, please! I'm hoping that in future everyone will use this forum rather than the other for this purpose.
Thanks, H!
T

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<br><br><br><br><br>I am in!<br> <br><br>

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boomerexpert | @boomerexpert | Apr 10, 2017

Hey all...check this out...https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 - far more research taking place in Europe than here... This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here...

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1 reply
mac47 | @mac47 | May 9, 2017

I couldn't agree more! Are you aware of any ongoing clinical trials at these centers of excellence(UTx,NJH,Mayo)? I know there is a conference on MAC, May 19th in DC but am unable to attend. Great faculty on board for these talks & am anxious to hear what comes out of this conference.

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1 reply
mac47 | @mac47 | May 9, 2017
In reply to @heathert "I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating..." + (show)
@heathert

I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating MAC by inhaling a healthy lung bacteria that cannot co-exist with MAC(like the pink scum bacteria in our bathrooms that does not coexist with MAC), and can eradicate it from our lungs, or stop it from re colonising. It makes sence that we are killing off healthy bacteria in our homes with chemicals and hotter hot water temperatures, but the MAC can survive these chemicals and thrive without the other bacteria killing it off, then we only inhale live MAC not the other healthy types that do not cause lung disease. Who knows what they will think about my idea but if we dont try we wont know, so worth a go and maby it will jog their great scientific brains in some other helpful way ,if this idea is not possible.

We may not be medical scientists, but believe in ourselves and between us we can help!

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Speaking of inhaling bacteria, have you heard of a water filter you can put on your shower head to eliminate inhaling MAC colonized in the water/ shower head? I've read this can be a source of infection( like "hot tub" lung).

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2017
In reply to @mac47 "I couldn't agree more! Are you aware of any ongoing clinical trials at these centers of..." + (show)
@mac47

I couldn't agree more! Are you aware of any ongoing clinical trials at these centers of excellence(UTx,NJH,Mayo)? I know there is a conference on MAC, May 19th in DC but am unable to attend. Great faculty on board for these talks & am anxious to hear what comes out of this conference.

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<br><br><br><br><br>I, and two others on this thread are attending the conference and will be <br>reporting back what we have learned.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2017
In reply to @heathert "I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating..." + (show)
@heathert

I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating MAC by inhaling a healthy lung bacteria that cannot co-exist with MAC(like the pink scum bacteria in our bathrooms that does not coexist with MAC), and can eradicate it from our lungs, or stop it from re colonising. It makes sence that we are killing off healthy bacteria in our homes with chemicals and hotter hot water temperatures, but the MAC can survive these chemicals and thrive without the other bacteria killing it off, then we only inhale live MAC not the other healthy types that do not cause lung disease. Who knows what they will think about my idea but if we dont try we wont know, so worth a go and maby it will jog their great scientific brains in some other helpful way ,if this idea is not possible.

We may not be medical scientists, but believe in ourselves and between us we can help!

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<br><br><br><br><br>I'd like to know more about this filter shower head. I am pretty certain I <br>caught my mac from a hot tub.<br> <br><br>

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Katherine, Alumni Mentor | @katemn | May 9, 2017
In reply to @heathert "I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating..." + (show)
@heathert

I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating MAC by inhaling a healthy lung bacteria that cannot co-exist with MAC(like the pink scum bacteria in our bathrooms that does not coexist with MAC), and can eradicate it from our lungs, or stop it from re colonising. It makes sence that we are killing off healthy bacteria in our homes with chemicals and hotter hot water temperatures, but the MAC can survive these chemicals and thrive without the other bacteria killing it off, then we only inhale live MAC not the other healthy types that do not cause lung disease. Who knows what they will think about my idea but if we dont try we wont know, so worth a go and maby it will jog their great scientific brains in some other helpful way ,if this idea is not possible.

We may not be medical scientists, but believe in ourselves and between us we can help!

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@mac47 and @windwalker, Terri, I had just a few minutes so went back on my File Cabinet and found the below .. hope it helps! Hugs! Katherine

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 posted on the Forum how to purchase them if anyone is interested. They are the expensive "0.2 micron filters shower heads" for my shower that I have to replace monthly .. the name of the product is: Kleenpak™ Disposable Shower Head Filter.

BUT see the below:

1. You CANNOT prevent MAC/MAI .. the best thing written I've seen I put in my File Cabinet:

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)
PLUS from Dr Aksamit Mayo Clinic:

FILTERATION OF HOME WATER SYSTEMS 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.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09
@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

From one of our members: I got ONE of my mycobacterium (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live.
p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!

NOTE: I saw Dr. Dulohery today .. good appt. As I have the energy I will say more .. BUT good info. She said to watch http://conference.thoracic.org/ for good information on new research on drugs being tried out for our diseases. Let's check it out and share anything we can find out! She is going to be attending .. hope she brings back good information for all the Mayo Team!Hugs! Katherine

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 10, 2017
In reply to @heathert "I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating..." + (show)
@heathert

I have emailed the Nat Jewish Hosp lab team and FDA with an idea of treating MAC by inhaling a healthy lung bacteria that cannot co-exist with MAC(like the pink scum bacteria in our bathrooms that does not coexist with MAC), and can eradicate it from our lungs, or stop it from re colonising. It makes sence that we are killing off healthy bacteria in our homes with chemicals and hotter hot water temperatures, but the MAC can survive these chemicals and thrive without the other bacteria killing it off, then we only inhale live MAC not the other healthy types that do not cause lung disease. Who knows what they will think about my idea but if we dont try we wont know, so worth a go and maby it will jog their great scientific brains in some other helpful way ,if this idea is not possible.

We may not be medical scientists, but believe in ourselves and between us we can help!

Jump to this post

<br><br><br><br><br>Thank you Katherine. I remember this post from awhile back. I thought that <br>maybe they were speaking of a newer kind of shower head. I had read years ago <br>that bathing in a bath tub was better than showering because you won't inhale <br>the spray. I still take my chances in the shower.<br> <br><br>

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