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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.
Thank you for your time in advance,
English
Replies to "Hello all, I am new to the community. I am in NC and diagnosed with MAC..."
@128128terry11t, Hi Terry. I do not know the answers to these questions. Would you be interested in doing the research online and get back to us on that? I know there is lots of info out there about it. Perhaps looking up papers written by Dr. Joseph Falkinham, or some of the NTM videos on Youtube. Or Google specific question. It is ok if you are not up to it. I am not feeling quite up to snuff lately or else I'd be all over it. Thank you
How about if I do you one better as they say. Dr. Joseph Falkinham is on the faculty at Virginia Tech University. I am on the faculty at Long Island University. I will attempt to CALL him horse thief to horse thief. I will tell him that I have been tasked by this forum to speak with him and ask him some questions so that we all are better educated with regard to NTM. I think that it is important that we take our time and prepare a list of questions. Once we have the questions, it will be my privilege to try to communicate with him. I look forward to hearing from you about this suggestion. Hope that you are soon feeling better. Terry
@128128terry11t Terry, that sounds marvelous! He has been wonderful and generous to return all of my e-mails in a timely manner. I think that actually speaking with him might be even better. Hopefully, he would volunteer some info that we do not know to ask.
Sounds like a plan. I have Kay's questions (we met on this forum and have become very good friends!) and mine. I look forward to receiving your questions and anyone else that wants to have input. In the meantime, wishing you better health. Terry
Terry
I will continue to work on my questions and try to have a list by early September. I'm sure we will get some additional questions from the forum. I'm thinking in addition to Falkinham we should contact the microbiologist at NJ as well. We have his email. I think someone who is a patient at NJ will be more likely to get a response. That could be you or another of the many people on the forum who see doctors at NJ.
Thanks Terry
Kay S
Another person should contact the microbiologist connected with NJ. That person may think of different follow-ups to questions aiding us in having more than one person's take on what additionally to ask when the scientist responds to the initial question. I suspect that the communication will be solely an email one. Terry
@128128terry11t Terry, will you please ask him if there are any open forums at Va Tech on bacterial subjects? I am up in Virginia every other month to visit my daughter. I could drive to forum if they have them. Thanks!
Will do. I think a good time to contact him would be a few weeks after the Fall semester has started. It can be quite hectic at the beginning. By that time, we should have our questions ready to go. Terry
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@kaystrand, Excellent questions! I am glad to see you thinking this through. The experts say that once you have raised the hot water temperature, you should run the hot water first through the pipes for five minutes. This should scald out the MAC living in the the pipes. then proceed to use. The way we get it from drinking water is mostly because our faucets have that little screen in it. That screen causes tiny aerosolized water to come out. If you do raise the temp on your hot water tank then you can run it though the kitchen sink and flush out the MAC. Bear in mind, these are things that I have read and/or heard directly from the experts at the last NTM convention I attended. I am not repeating them as the gospel truth from my own mind, I am no expert. Little is known about these mycobacteriums, therefore: information can likely change or have conflicting opinions. I just posted on the main forum two sections about these two topics. Let me know if you do not see them. Thanks!