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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Terri, PLEASE do not take this as gospel .. but I just went back on the LIMITED info I got on 23and me and found:
"Most studies indicate there that there is no increased risk for disease in MS individuals." .. SO if you are indeed MS .. this may give you some peace of mind?? But PLEASE take this with a grain of salt!!!! Do your own "Due Diligence"! Katherine
These bugs are very resistant, I have heard that these bugs are resistant to many chemicals including bleach, they recommend using 10% acetic acid vinegar can kill them for cleaning the home. unfortunatly we are not advised of this when buying a hottub.
Heather, I was told by Dr. Aksamit that hot tubs were a very REAL potential for mycobacterium so to stay away from them .. personally I wouldn't go near one with my propensity for this disease! Katheine
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1 ReactionBoomer this is just great and I want to help. I have questions!
1- Who should I be sending letters to? I live in Minnesota.
2- I'm not close to as good a writer as you, so do you think if I take the first part of what you wrote above, and added that I am one of those infected with MAC and sick from antibiotics that would be good? Or do you have another suggested letter somewhere?
3- Anything anyone has heard of going on in Minneapolis, MN re NTMs like there are in Cleveland and other places?
4- How DO you think we get the media involved?
5- How DO we make this disease reportable? Does it have to be human to human contagious?
Many Thanks!
Kay Strand
As I may have mentioned earlier so pardon me if I'm repeating myself, send letters to the editor of your newspaper, to the docs on TV like Oz, Gupta, Snyderman, etc.as well as any regular columnists who cover medical issues... That is how to get the media involved... Folks have also commented on research projects that ask for comments; there's one in Kate's forum with both comments sent by us in that forum. My opening statement for this forum is designed to provide all the info needed to help folks understand the seriousness of this infection; of particular note is the believe vast underreporting of cases given no requirement to report as with TB (add to that the as yet Dx cases). Finally, I continue to offer what I've written as a template - feel free to use some or all of it! Using your own experience is always the most powerful.
Thanks for your advocacy, and....Go get'em girl!
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1 ReactionHey guys hope everyone is doing alright. I have been racking my brain and im so confused trying to buying a shower filter wand. I have mac and asked my pulmonary dr about filtering water and he said its unnecessary. But my resarch says i need o-
Please help?
Becky
Great thanks @boomerexpert! The amakacin trials seem to show that it is not a cure but may help with management, so there is still no cure out there for most of us, and we need one, even patients who have obtained clear sputums whilst on amakacin have reinfections when they go off it. We desperately need new medications. Together we can make a big difference!
Since the bacteria hang out in the pipes, filtering after the fact won't help...I gotten a whole house 0.2 micron filter that gets'em out at the source... will take a while for the clean water to flush out my pipes, but over a few months I believe I'll be bacteria free! My cost was around $500 for filters/casing and installation (I have a small house; 1500 sf) - filters are expensive and must be changed every 6 months...Those who can afford to do this, I hope you will.
Thanks for the information. I ll start looking into the whole house filter. Did you research by Google or did your doctor recommend one for you? The forum here is really exceptional. Everyone is so knowledgeable and kind and you get the feeling that they would give you the shirt off their backs. Thanks for all you do!
Becky
Boomer, I like you .. wanted to be proactive and do anything I could think of in terms of home water filtration. Since we downsized to a condo I was not thinking about whole house filtration but went for 0.2 micron filtration system at my sinks. Frankly I was quite proud of myself and at my November appointment with Dr. Timothy Aksamit at Mayo Clinic I showed him the detailed info on my carefully installed sink filtration system that included a photo as well as specs.
Sorry to say, despite all my research on the subject .. with his much better medical/scientific knowledge .. he took one look at it and in a nice tone of voice essentially told me I had wasted my time and money. WHY? Because of BIOFILM .. no matter how well I filtered the water in the system biofilm (including mycobacterium) was going to end up forming inside the faucet itself and being expelled through the faucet. ANY faucet will end up with biofilm .. a breeding ground for mycobacterium .. even the fancy one I had purchased! I was pretty sad .. but at least this wonderfully filtered water really tastes good!
https://www.ncbi.nlm.nih.gov/pubmed/16611229
@chinasmom, hope this helps you also. Good luck! Katherine