MAC Big Three Side Effects

Rick, This sounds like a tough road. I was thinking of being in a test study for Amikacin. Maybe I'll rethink it! Hoping you get an answer and on the best path! Airway clearance: good nebulizer and nebulizing solutions, nasal rinse, etc. Best to you!

Thank you so much for your input! I have a difficult time understanding why my questioning funding in my home state would elicit negative comments but I agree with your assessment that people generally are not interested in research funding.
That’s very interesting that interest did surge in MAC with the AIDS epidemic. It is understandable that with compromised immunity, susceptibility goes up, but from what I’ve read, NTMs are on the rise and not only in the immune compromised. I agree that it takes a very astute doctor to even test for MAC-I wasn’t tested for over 2 years, but they certainly searched for every other possibility in my body. Perhaps if MAC/NTMs were better researched and publicized, especially in areas know to have an unusually high number of cases(again, something that would be common
knowledge of with research)doctors, who have been made aware of heightened risk, would be able to diagnosis the disease much faster. I have a lot of lung damage after going so long without treatment and I am a patient at a state university hospital(in 4 different “speciality”departments).
I truly believe there are many people walking around undiagnosed as the symptoms are so varied, in communities who don’t have access to good health care, among people lacking insurance coverage, and as you said, doctors who are blissfully unaware of these infections.
I am one more in the “secret society” of this debilitating disease. Yes, knowledge is power but sometimes I feel like we are living in an ignorance is bliss reality.
Thank you again for responding!

I have recently been doing a water aerobics class and read about MAC being chlorine resistant. I wrote my dr to ask if I should d/c pool activity. She said if the pool is well maintained it is okay. I just want to be sure....Does anyone know, if you are already diagnosed with MAC, can going to a pool make it worse?

I’m from North Carolina. What’s PI please?

What’s do and tx please?

I have never been on the IV course. If for some reason my Dr changes course and treats me for absecsus I will be on IV. They have not taken me off ethanbutol because of eye problems.

Even if you get rid of MAC/NTM the bronchiectasis is always there. Airway clearance is a lifetime thing. I have cavitary MAC/NTM. I'm not sure if that's the same as what you call "abscessus." If you have cavitary, airway clearance is even more important. Best to you in finding the right doctor and in moving forward.

Welcome to Mayo Connect. It seems overwhelming when we first get this diagnosis, but trust me things do get better over time.
I'm going to try to answer several of your questions, but would invite @poodledoc, @irenea8 and other "veterans" to weigh in with their experiences.

First, the vest should be a help with airway clearance, but if you are trying to avoid the antibiotics, I would suggest that you also ask about nebulizing 7% saline, which has the dual advantage of thinning mucus and potentially suppressing the bacteria growth. Here is an article to introduce you to it:https://smartvest.com/blog/airway-clearance-techniques-for-bronchiectasis-and-copd/

Second, most of us were told that outdoor pools are safe. Chlorine does not kill MAC so it lingers in the copious water vapors above an indoor pool or any hotub, so these are to be avoided.

Finally, not everyone experiences hearing loss from the drugs - I got my a baseline hearing test, then was tested by an audiologist every 3 months to be sure, since I already have issues with tinnitus and age-related loss. So if you need to start, just be hypervigilant.

If you spend some time reading other discussions in this support group, you will find the answers to many of your questions.
Sue

I don't want to start or encourage a argument here, and I feel bad that there were negative comments made. In an ideal world, there would be endless funds to study diseases and find cures. However, we live in a world that is far from ideal.

While this very engaging article (https://www.frontiersin.org/articles/10.3389/fimmu.2020.00303/full) and uses
terms that lead one to think NTM/MAC/MAI is "surging" we are not talking about any kind of cause for alarm here.

First, let me say that I am not certain whether the prevalence of NTM is increasing, or its diagnosis. I know of several people who were sputum-tested this winter after CT scans showed bronchiectasis - 2 of them have had symptoms for a while - but not the almost 5 years that I did.

Second, as to being "on the rise and not only in the immune compromised" - it seems in my reading that most cases are still among people who are either immunocompromised, or who have underlying lung conditions that have caused damage - Cystic Fibrosis, COPD, emphysema, bronchiectasis, chronic bronchitis or asthma, or pneumonia (and now COVID) lung damage. It is entirely possible that people with lung diseases, especially CF, are living longer because of better treatment of their primary ailment, and eventually encounter NTM.

Given the rarity of encountering NTM, it does not surprise me that many doctors have a hard time recognizing it. My first pulmonologist has been practicing for over 30 years, mine was only the 27th case he had ever seen and my ID doc had encountered fewer than 50 cases- both work in a huge multi-disciplinary urban clinic, with a typical patient load of around 1000 patients. They have little time to study the most up-to-date protocols for treating MAC or other rare diseases or infections. I spent many hours studying treatment options Connect, in scientific papers and from National Jewish Health, then discussing with my docs. For example, none had heard of 7% saline nebs before I brought it up.

This is why you often find members on Connect suggesting that people seek care at Mayo, NJH, and other centers that specialize in treating NTM.

Finally, when it comes to both identifying NTM and to finding research dollars, let's try a little math -
About 33 million have diabetes in the US (10,000 per 100,000 of the population), resulting in over 100,000 deaths per year and untold billions in health care costs.
About 1.9 million (550 per 100,000) people per year are diagnosed with cancer and over 600,000 die in the US.
About 86,000 - 100,000 people in the US have NTM (25-30 per 100,000)
Unfortunately, with these numbers, it stands to reason that we stand "at the back of the line" with other rare diseases when seeking funds. Do I like it? No, but I don't know what we can do about it.

I don't plan to say more on this subject, as I prefer to spend my limited time trying to point people towards resources for dealing with NTM and other health issues.

Sue