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

Thanks Boomexpert, lets do it!

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!

It makes much sense, great idea! As does using existing (albeit new) technology that allows for inhaling treatments that heretofore could not be taken down to small enough particles for inhalation…for now, that could be the 1 or 2 antibiotics that at least minimize each strain of MAC/MAI…

Yes inhalation could be the way to go, directly into the lungs and saves the other awful side effects!

Liked by Paula_MAC-2007

I do like the idea of organizing a group that contacts facilities and research groups, to find out what is happening with research and advocate for our disease. Our disease is such an unknown, and NTM/MAC patients have not organized except thru this tiny blog and the blog at INSPIRE thru the National Lung Association. Seems there is a lot of dispersed information or research out there, just not listed in one place.

Liked by heathert

I’m glad, Paula! So…get crackin’! Any research you’ve found that you think will be helpful to all, bring it here!

Two articles on “good” vs “bad” lung bacteria:
Also, I’m using Chinese medicine natural treatments to assist my lungs with healing; accupuncture, Allertrex (inhaled) and a strong mixture of herbs for lung health in tea form (must be created by the Oriental medicine practitioner; over the counter teas for lung health far too weak for our needs). Here’s a few more ideas for naturally improving lung health (I think it can help my lungs fight the infection…not recommending it supplant antibiotics, but believe it may help them be more effective…can’t hurt, can only help): http://www.collective-evolution.com/2014/02/20/15-plants-herbs-that-can-boost-lung-health-heal-respiratory-infections-repair-pulmonary-damage/

Liked by heathert, pfists

wow thanks for the articles @ boomerexpert, so interesting, my idea wasnt so crazy afterall. Fantastic, there really are people out there trying to help with this which is great!

I’ve added this to my original call to action:
“I believe that patients who endure the impact of this medical vacuum can do much to 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 talk with our physicians about better treatments, asking them to push for more research. We can continue to search for, and share, information on clinical trials for new NTM treatments. Finally, we can use this place as a repository of ideas we have for better treatments (inhalants/using the good bacteria to combat bad/etc.).
If researchers, docs, and the general public hear from us…” the rest remains the same.

Liked by heathert, tdrell, pfists

The things that I wonder about helping cause my MAC are: Spa pool use, Hormones/perimenopause, anxiety/stress, vegetarian(was eating very little protein), allergy sufferer all my life and sinus problems, family history of lung issues. Lets see what we have in common, if we all list what we think may have helped MAC get a hold in us , and reply to each others comments with what we have in common we may come up with interesting info.

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.

1. Why are more people getting MAC and NTMs now than in the past?
2. Tuberculosis is a reported disease, NTMs are not. They are also difficult and expensive to diagnose and the increase of 8% per year might be very low. If they are growing at even 8% per year that is a number worthy of more research dollars.
3. What do NTMs effect mostly females over age 50? My doctor says there is likely a hormone connection, but uncertain of what that means.
4. Why are tall, thinner framed women more prone to NTMs?
5. What is critical mass to get research dollars going to find better treatments with fewer side effects?

Thanks for this, Kay. In fact, a yearly 8% increase is statistically quite significant, particularly considering that this includes only those who have been diagnosed and somehow it was reported. Researchers agree that the number of people infected with an NTM is much higher. We now have the FDA and Nat’l Jewish looking into this – a good sign. What we must do en masse is push them to move beyond discussions into funded research. The more people heard, the more likely this will get traction.

Liked by tdrell

Such articulate writers are in this support group…cool! Boomerexpert asked for ideas for a call to arms to make the public aware of this budding catastrophy….. How does one get cnn medical involved….or 6o minutes…or???? TerriD

Here’s a great “how-to” to get you started: http://sternstrategy.com/sell-ideas-media-insights-former-cnn-producer/
Here’s a few ways to contact CNN: http://www.wikihow.com/Contact-CNN – I’ve left a message for Dr. Gupta’s on FB
To reach 60 Minutes: http://www.9jumpin.com.au/show/60minutes/send-a-story/
I also left this on 60 Minutes’ story idea form:
“Formerly relegated to those with HIV as an opportunistic infection, NTM’s (Non-Tuberculosis Mycobacteria) – found in everyone’s water or soil – are now infecting the general population at an alarming rate. As Zika, which is fully preventable, occupies headlines and top stories, this under-reported, poorly treated, and deadly infection is just heating up. For a bit of an overview: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/
Not only must people be aware, but raised awareness could lead to more effective treatments.”

Liked by heathert, tdrell

Please login or register to post a reply.