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?

Liked by heathert, tdrell, pfists

@chinasmom

Hey everyone hope you are doing your very best. Because afterall that’s all we can do. I am a newbie and feel silly because i dont know all of the abbreviations being used. So i see my ct reports and there are suggestions by the radiologist doctor to the pulmonary doctor to consider bronchopneumonia including MAC infection. I am wondering if a sptum culture would show the MAC or would the test have to be specific for the lab to to run the test? Should i ask to be tested based on the radiologist suggestion? Thank you for this forum and fellow patients input.
Becky

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Chinasmom,,,you asked if sputum would show NTM….mine did not…..4 months later when I had a bronchoscopy….this past July….the washing from it showed it. At the NTM work shop I was fortunate to be able to attend in Denver at National Jewish yesterday….they said that in order for NTM to show up on a mucus smear…initially…there had to be an extremely high concentration of NTM organisms….However in a “special lab”….a culture can be prepared to see if over 6 weeks NTM grows….patients really have to clarify with labs how they manage theircultures….we were told at the workshop
I know I will be asking lots of questions of the one where I live .terrid

@Paula_MAC2007

Hello everyone,

News about NTM is getting out there. I meant to let you know about this a few weeks ago . . . Eric Chase swims for NTM cause.

Manhattan Beach resident Eric Chase has been swimming in the “Dwight Crum Pier to Pier” swim between Manhattan and Hermosa Beach for 20 years. But this year, his athletic endeavor has new meaning. Chase is swimming for a cause: to raise money for a close friend suffering from Nontuberculous Mycobacterial Lung Disease (NTM) and for the thousands of other patients impacted.

source: http://tbrnews.com/news/manhattan_beach/manhattan-beach-resident-swimming-for-ntm-cure/article_6f43f6c8-59ba-11e6-bb1a-67df3d345353.html

Also see this at NTM Info & Research, Inc. – https://www.ntminfo.org/top-news/articles/current-news/item/719-eric-chase-swim-results

I met with my pulmonologist last week, and let him know about 2 blogs to which I belong. And that many of us with NTM or MAC are trying to get the word out to all our docs that we would like NEW RESEARCH, BETTER MEDS — PREFERABLY INHALABLE DRUGS! I had literature I took him that I posted here. He went to medical school in Michigan and never learned about NTM or MAC since it was not known there; came to SE Wisconsin where he immediately learned the disease is a ‘hot spot’ here. We discussed ‘why’ here and not Chicago! He was not aware of the US Food & Drug Admin meeting with NTM patients or caregivers, soliciting their experiences. He asked for the link with the April published results.

Trying to spread the word . . . Paula

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Paula what is the name of the Dr you go to in SE Wisconsin terrid?

@boomerexpert

Thanks T, good info! These videos cover info we can’t find on the web?

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Hi folks…writing this the day after attending workshop for patients with NTM at National Jewish in Denver. They will be posting all the videos in a few weeks…a must see… Does not duplicate the materials in videos from last years…2015 . So best to watch both years.
Some random tid bits..
A patient who shows no signs of NTM after treatment is called “in remission”

I sat at lunch with two spiffy looking ladies who both had lobes removed several years ago not on MDs now…and exercise several times a day…and also do pulmonary therapy so as to be sure no mucus can settle in lungs and be a home for NTM

Dr Joseph Falkinham PH.D. A microbiologist whose whole career has been studying NTM….said there are now 171 species as of July 2016….last years lecture said 150….said to insist knowing exact species you have not just generic MAC or MAI…look at his video to hear all reservoirs NTM found in….ex. Water from refrigerator…as well as ice
Reviewed in detail info on shower heads HVAC air.much much more…invited all to email him with questions at
Jofiii@vt.edu
I asked him after lecture what do health department sanitation workers check for at YMCA. ( or any other) pools….he said certainly not NTM….but e.coli( from poop..my addition) and the Ph. Of the chemical used to be bactericidal) I suspect that is where I acquired my NTM…there is a warm pool and hot tub both of which I used for over 16 years.
Said that his university Virginia Tech as part of their agenda has the goal of making NTM disease reportable.tdrell

@chinasmom

Hey everyone hope you are doing your very best. Because afterall that’s all we can do. I am a newbie and feel silly because i dont know all of the abbreviations being used. So i see my ct reports and there are suggestions by the radiologist doctor to the pulmonary doctor to consider bronchopneumonia including MAC infection. I am wondering if a sptum culture would show the MAC or would the test have to be specific for the lab to to run the test? Should i ask to be tested based on the radiologist suggestion? Thank you for this forum and fellow patients input.
Becky

Jump to this post

Terri D
Exactly the same here. I had 2 sputum cultures done from just coughing, nothing showed. Then in July, 7 months after a cavity showed on my CT scan, I had a bronchoscopy and the wash showed MAC in a biopsy. They were diagnosing my cavity as post pneumonia, but it is indeed MAC in my upper right lung. Then in August, it actually grew on a culture I had done at Mayo, just coughing. It must have been growing.

Good info on having to keep your lungs clear after and if the MAC is in remission or just in general when you have MAC. I have post nasal drip and constant clearing away of pflegm, which I know can have bacteria in it. I will be going back to Mayo 10/6, a CT scan and sputum culture will show if the MAC is clearing. I’ll be talking to my doc about how to clear away this pflegm thing which will need to be gone to keep MAC at bay. Right now it’s a lot of clearing of a junk that feels like it’s in my throat and bronchial tubes. It’s very irritating but I do hear older friends doing the same thing. I think we might get thicker mucous and looser throats, or it might be digestion related. I’ve NEVER gotten a good answer. I took PPIs for “Silent reflux” for months, they did nothing to help.

Doing OK on the big 3. My MAC is only susceptible to Clarithromycin (Azithromycin ) and moderate to Ethambutol and Rifamptin but I understand the latter 2 help the MAC stay susceptible. Not sure how this all works, but a bit unsettling that my MAC won’t go away with any drug but one! There’s a chance I could have surgery after 6 months on drugs.

Anyone out there have cavitary MAC and take drugs for 6 months then have surgery?

Some new and innovative drugs would be great. I wish this disease would get some attention. Maybe someone famous needs to get it! Theres a few famous people out there with nagging coughs! Anyone notice?

Back to my vacation in Boston. Take care all.

Thanks for the good info. Waiting for the link.

KayS

@boomerexpert

Thanks T, good info! These videos cover info we can’t find on the web?

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Thanks for the very comprehensive review, T! I’ve gotten a whole-house filter at the 0.2 micron level as recommended by Nat’l Jewish for removal of MAC from system… not terribly costly – approx $500 including install, but I find well worth it to ensure I will not be constantly re-infecting myself…

Liked by tdrell

How many people on here have sinus infections and post nasal drip also? could MAC also be in our nose tubes? will the antibiotics fix that also? It could be reinfecting us. I really hope they come up with something new soon. It sounds like many of us are resistant due to the films that form around the bugs and they are looking at ways to break them down at the moment which could be great. But we also need new antibiotics as the old ones do not work for all of us.

@heathert

How many people on here have sinus infections and post nasal drip also? could MAC also be in our nose tubes? will the antibiotics fix that also? It could be reinfecting us. I really hope they come up with something new soon. It sounds like many of us are resistant due to the films that form around the bugs and they are looking at ways to break them down at the moment which could be great. But we also need new antibiotics as the old ones do not work for all of us.

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Heathert…This was mentioned ….sinus drainage as something to be checked out at yesterday’s conference. Terrid

@heathert

How many people on here have sinus infections and post nasal drip also? could MAC also be in our nose tubes? will the antibiotics fix that also? It could be reinfecting us. I really hope they come up with something new soon. It sounds like many of us are resistant due to the films that form around the bugs and they are looking at ways to break them down at the moment which could be great. But we also need new antibiotics as the old ones do not work for all of us.

Jump to this post

oh right thanks Terri.

@Paula_MAC2007

Hello everyone,

News about NTM is getting out there. I meant to let you know about this a few weeks ago . . . Eric Chase swims for NTM cause.

Manhattan Beach resident Eric Chase has been swimming in the “Dwight Crum Pier to Pier” swim between Manhattan and Hermosa Beach for 20 years. But this year, his athletic endeavor has new meaning. Chase is swimming for a cause: to raise money for a close friend suffering from Nontuberculous Mycobacterial Lung Disease (NTM) and for the thousands of other patients impacted.

source: http://tbrnews.com/news/manhattan_beach/manhattan-beach-resident-swimming-for-ntm-cure/article_6f43f6c8-59ba-11e6-bb1a-67df3d345353.html

Also see this at NTM Info & Research, Inc. – https://www.ntminfo.org/top-news/articles/current-news/item/719-eric-chase-swim-results

I met with my pulmonologist last week, and let him know about 2 blogs to which I belong. And that many of us with NTM or MAC are trying to get the word out to all our docs that we would like NEW RESEARCH, BETTER MEDS — PREFERABLY INHALABLE DRUGS! I had literature I took him that I posted here. He went to medical school in Michigan and never learned about NTM or MAC since it was not known there; came to SE Wisconsin where he immediately learned the disease is a ‘hot spot’ here. We discussed ‘why’ here and not Chicago! He was not aware of the US Food & Drug Admin meeting with NTM patients or caregivers, soliciting their experiences. He asked for the link with the April published results.

Trying to spread the word . . . Paula

Jump to this post

@tdrell, you asked the name of the pulmonologist I go to in SE Wisconsin – it’s Dr. Lipchick. But there are several other excellent pulmonologists quite familiar with NTM or MAC at the teaching hospital where he practices. I say this because it is difficult to get an appointment with him.

@chinasmom

Hey everyone hope you are doing your very best. Because afterall that’s all we can do. I am a newbie and feel silly because i dont know all of the abbreviations being used. So i see my ct reports and there are suggestions by the radiologist doctor to the pulmonary doctor to consider bronchopneumonia including MAC infection. I am wondering if a sptum culture would show the MAC or would the test have to be specific for the lab to to run the test? Should i ask to be tested based on the radiologist suggestion? Thank you for this forum and fellow patients input.
Becky

Jump to this post

@kaystrand – you are funny! I am chuckling at your comment yesterday (9/18/2016) that “Theres a few famous people out there with nagging coughs! Anyone notice?” You’ve still got a good sense of humor!! I’m always on the lookout for people with nagging coughs not connected to allergies or colds.
Paula

Liked by tdrell

@chinasmom

Hey everyone hope you are doing your very best. Because afterall that’s all we can do. I am a newbie and feel silly because i dont know all of the abbreviations being used. So i see my ct reports and there are suggestions by the radiologist doctor to the pulmonary doctor to consider bronchopneumonia including MAC infection. I am wondering if a sptum culture would show the MAC or would the test have to be specific for the lab to to run the test? Should i ask to be tested based on the radiologist suggestion? Thank you for this forum and fellow patients input.
Becky

Jump to this post

Well I was told that my nagging cough could be caused by acid reflux

Hello all,
There’s a webinar tomorrow on “Strategies for Reducing Environmental Exposure to NTM Infection” put on by the NTM Info & Research, Inc. (https://www.ntminfo.org/)
DATE: Wed Sept 21, 2016
TIME: 1:00 PM – 2:00 PM CDT
It’s free. You can listen from your computer. The registrations site it here: https://attendee.gotowebinar.com/register/2378379267947088897
Unfortunately, I teach tomorrow at that time so cannot listen. Am hoping it will be available later.
Paula

Liked by tdrell

Wonderful, thanks, Paula, I will check into it! Hope others can as well.

@Paula_MAC2007

Hello all,
There’s a webinar tomorrow on “Strategies for Reducing Environmental Exposure to NTM Infection” put on by the NTM Info & Research, Inc. (https://www.ntminfo.org/)
DATE: Wed Sept 21, 2016
TIME: 1:00 PM – 2:00 PM CDT
It’s free. You can listen from your computer. The registrations site it here: https://attendee.gotowebinar.com/register/2378379267947088897
Unfortunately, I teach tomorrow at that time so cannot listen. Am hoping it will be available later.
Paula

Jump to this post

Hope it is posted on web for viewing later…we will be on plane back from daughters…thanks for letting us know

@Paula_MAC2007

Hello all,
There’s a webinar tomorrow on “Strategies for Reducing Environmental Exposure to NTM Infection” put on by the NTM Info & Research, Inc. (https://www.ntminfo.org/)
DATE: Wed Sept 21, 2016
TIME: 1:00 PM – 2:00 PM CDT
It’s free. You can listen from your computer. The registrations site it here: https://attendee.gotowebinar.com/register/2378379267947088897
Unfortunately, I teach tomorrow at that time so cannot listen. Am hoping it will be available later.
Paula

Jump to this post

This webinar “Strategies for Reducing Environmental Exposure to NTM Infection” put on by the NTM Info & Research, Inc. is now online!
http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php

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