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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old...we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis...they deserve better...so do we.
Replies to "Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread..."
Hello Paula, I soooo agree about "attitude of gratitude"! Each and every time I go for my check ups at Mayo Clinic .. I see so many people SO much worse off than I am. As you say .. I am HUMBLED by how well off I really am in comparison!
My last appointment as I went for a breathing test I saw a man about my age in a wheel chair breathing with an oxygen tank .. just wasting away. His wife pushing the wheel chair .. his daughter lovingly attending to both of them. Just broke my heart. The love between the three of them .. the luck of the draw between myself and him. There but for the grace of God .. so much of life is our of our hands. We all do the best we can with the knowledge we have at the time. I just feel so blessed that I found a specialist who understood my disease MAC at Mayo Clinic .. across the USA many people cannot find a good specialist. In SO many ways I have been blessed.
LOVE your attitude .. just keep on with your positive life style and keep on with that great attitude! Sending you a hug! Katherine!
As I mentioned in my rant (yep...I know I ranted...:)), millions of people get this dx worldwide, almost as many as the number dx'd with RA (Rheumatoid Arthritis - I have it as well...) yet lots of clinical trials for new treatments for RA... The difference, to me, is that Rheumatologists work with just the one condition so constantly seek better treatments...few docs treating MAC/MAI do same, so they simply don't push for better treatments. But if each of us urged our respective docs to push for something better, we might just start a movement... Good thing the Founding Fathers didn't wait for a celebrity to take up their cause...ya?
I am a firm believer in the power of the people...in our case, it's we the MAC/MAI dx'd people...to insist on change.
Final thought: all the clinical trials you'll find are for people who tried traditional treatments and failed...none for new treatments to replace the old (and I mean OLD) ones.
@katemn, I think attitude is a big part of my 'recovery' and just being able to lead a 'good life'. I have seen pulmonology patients that take me down with humility - I have nothing to complain about, although MAC/MAI is a challenging disease to have. I try my best each day.
Paula, I so appreciate all your efforts on this Forum .. you are such a booster for people .. I think it really helps people newly diagnosed for people like you and me who have "been in the trenches" to take our time to take just a bit of the fear away. We know just how scary it is in the beginning .. BUT we also know that we have come out on the other side with some knowledge that we WILL survive .. we WILL live our lives despite the challenges. NOPE it isn't always fun .. NOPE we wouldn't always choose it .. BUT I sure as heck would choose it over what I see each and every time I go to Mayo Clinic for my check ups! Like you say .. Attitude of Gratitude. Stay the Course my Friend! Sending you a Big Hug! Katherine
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@boomerexpert,
What an interesting thought -- that our meds are an outdated treatment for MAC/MIC. That's probably because -- as my pulmonologist said when I was diagnosed and I asked to get in a 'study' -- it's not a 'sexy' disease with lots of people getting it, so there's not much impetus for drug companies to invest in new drugs. Fortunately, I'm extremely thankful for the 3 drugs I've been on, and that I do not find the drugs intolerable. There are so many worse diseases. I've never missed a day of work (60 hr work weeks) over the years due to MAC/MAI, but that's probably because I changed my lifestyle -- put all effort into proper rest & sleep, exercise, taking meds, & talking with my docs. In the 21st century, MAC/MAI is not a killer like it was during the HIV epidemic decades ago. Mostly, when visiting my pulmonologist's office, and seeing people in special wheel chairs with cystic fibrosis and other terrible lung diseases, I am grateful for my response to MAC/MIA and so humbled because they have it much worse than I.
That said, boomerexpert, I'd love to see a petition started to doctors and drug companies, with push for studies and getting new, better drugs for us all. We'll probably need a famous person getting MAC/MAI and having a terrible reaction to the drugs, to get some action.
Best wishes,
Paula