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NTM/MAC/MAI: We must advocate for ourselves
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?
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Hi Katherine. I live in an apt with two bathrooms and I have been only used one shower. I am thinking of using the unused shower, but I am scared of MAC and legionnaires and other bugs, which may be present. Aside from wearing an N95 mask, removing the showerhead and turning on the exhaust fan, how else can I protect myself? The filters that you use, what are they called and where did you buy them?
Thanks.
J
Good morning J, I am not Kate - she is no longer on Mayo Connect, but let me try to answer your questions...
First, I can see that you are fairly new to the group, and that perhaps you watched the NTM videos from MUSC, it that correct?
We each go through a period, early in our MAC journey, when we think we must do every single thing suggested to avoid the germs, and it feels overwhelming! Eventually we settle into a routine that works for us and allows us to continue to live our lives.
Here is a recent discussion where you might get some answers to your questions:
https://connect.mayoclinic.org/discussion/remodeling-and-shower-heads/
To chat with others who are concerned with water safety, you can read here:
https://connect.mayoclinic.org/discussion/have-you-had-your-water-tested/
One more tip to get replies - look at the date a post was made, the respond to a recent one using the "REPLY" button.
I hope this helps get the information you are looking for.
Sue
Thank you, Sue.
Yes I am recently diagnosed with BE. I am scared, no, I’m petrified, of getting the germs. This support group has been a godsend.
J
Deep breath! I was terrified too when I was diagnosed over 4 years ago, after 2 years of not knowing and being constantly very sick - I had MAC & Pseudomonas as well as Bronchiectasis and went through antibiotic therapy. I stopped them after 18 months even though my sputum culture still said I had MAC, and switched to rigorous airway clearance and a healthy lifestyle. I am still doing fine, almost 3 years later.
My ID doc gave me the best advice ever "Bronchiectasis is a condition you learn to live with. Germs are everywhere; the only way to avoid them it to live in a bubble - and that's not really living. Take prudent precautions and get on with living your best life."
The most important thing I do to stay healthy is airway clearance. It keeps mucus from settling into my lungs and creating a warm, moist environment for germs to grow.
Have you been advised to do airway clearance? If you are not infected now, it is probably the most important step you can take.
Sue
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