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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

REPLY

@prelle1

Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!

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@prelle1 I agree completely with @egayle187 — you and all of us deserve dignity and caring, and treatment from doctors with knowledge and expertise in NTMs including MAC. Diagnoses with NTMs have increased and are set to overtake diagnoses of Tuberculosis in the future, so it's about time there was more awareness and knowledge in the medical profession. And we need them to be kind and thorough as well.
I wish you luck with getting much better medical care soon.
This is a long-shot, and I don't know what he is like, but there's an international medical expert on NTMs and MAC at the University of Texas in Austin — Dr Richard J Wallace. Have a look at this link: https://www.maclungdisease.org/richard-j-wallace-jr-m-d/ . He doesn't take patients at the moment, but I'm pretty sure that contacting his clinic at the University of Texas Health Science Center would help you get referred to a doctor with the right expertise. (Address: 11937 US HWY 271, Tyler, TX 75708, USA, (903) 877-8953 ). There's also a web page on how to become a patient at UT Health: https://www.maclungdisease.org/how-to-become-a-patient-at-uthsct/ . It sounds like you don't have all the test history they normally need but explain that to them, explain what has been happening to you, and take all the information on your medical history and treatment that you can get hold of.
Please let us know how you are going. Good luck! Annie

@anniepie

@windwalker Thanks so much for this — I will try the Niacin for the tinnitus.
Happy Christmas to you Terri

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I read somewhere that the time release Niacin can cause liver problems… might want to check that out

@prelle1

Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!

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@prelle1 I am going to suggest you google pulmonologist in your area. The majority of their staff will talk to you without you first making an appointment. If you can’t find someone, PM me and I will help you…

Liked by Margie E

@prelle1 I Googled "top rated medical center Houston and here's the results: https://www.google.com/search?client=firefox-b-1&q=top+rated+medical+center+Houston recommend you start with these…and so sorry you had such a terrible doc…it is incumbent upon us to do our own research and advocacy…glad you are doing so now.

@helem

I read somewhere that the time release Niacin can cause liver problems… might want to check that out

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@helem Thanks Helen I will check this

@prelle1

Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!

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@prelle You can go the the website http://www.ntminfo.org for a list of doctors in your area that are certified in the care of MAC and Bronchiectasis.

Liked by tdrell

@merrymerry I live in Walworth County Wisconsin also!!!!!! Where is your Pulmonologist located?

@boomerexpert

@unicorn progress is being made on the tricky process of making an antibiotic inhalable (make it small enough to enter the lung without difficulty)…the only thing that will speed things up is to keep on the CDC and Nat’l Jewish to fund/conduct trials for the effective treatments that we know now exist but aren’t being funded or given priority…hey, everyone, we have 2/12 years…

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We must keep on the pressure to particularly the CDC and FDA…the more folks from whom they hear, the more recognition that this is not a fringe disease as they currently believe…we w/MAC number in the millions…let's let'em know that…

@boomerexpert

We must keep on the pressure to particularly the CDC and FDA…the more folks from whom they hear, the more recognition that this is not a fringe disease as they currently believe…we w/MAC number in the millions…let's let'em know that…

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@boomerexpert I completely agree, I have written to FDA many times, the last one was to approve Amakacin Inhaled, they listen and reply, thank goodness! The more who write the better.

HI All My last email from FDA.

Patient Affairs Staff (PAS)

Food and Drug Administration

U.S. Department of Health and Human Services

New FDA Voices post: FDA's Patient Affairs – “Our Door is Open"

AtPatient Affairs, we believe patients are experts when it comes to their health conditions. Supporting and understanding the patient experience and incorporating patient feedback into our work is an agency-wide priority. A year ago this month, the FDA established the Patient Affairs Staff in the Office of the Commissioner to build on and further improve our 30+ years of engagement with patient communities. In the latest FDA Voices post, PatientAffairs Staff Director, Andrea Furia-Helms, and Deputy Director, Samir Shaikh, highlight some of our latest patient resources and activities, and share more about what’s to come.

More information
•FDA Voices: View the post here
•Learn about the Patient Affairs Staff: Visitour webpage
•Follow us! Did you know Patient Affairs is on Twitter? Connect with us @FDAPatientInfo

Interested in learning about ways patients can get involved at FDA? Contact FDA's Patient Affairs Staff at (301) 796-8460 or PatientAffairs@fda.gov.

@irene5

You should have had an EKG prior to starting the meds. You need to report these symptoms ASAP. I am not trying to alarm you as it may be nothing. However, my ID doctor said one of the meds causes heart arrhythmias so you should probably give your doctor a call.

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@irene5 I had the hearing and eye exam prior to treatment but not an EKG. Thats something I did not know thanks for the info.

@windwalker

@prelle You can go the the website http://www.ntminfo.org for a list of doctors in your area that are certified in the care of MAC and Bronchiectasis.

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Hi everyone I want to wish you all a Merry Christmas!!! I wish you all good health and happy New year. I hope and pray we all will have a great year ahead. Maybe a cure? 🙂 anyway hope is good! So hang in there and we can all do this one day at a time. Hugs to all Rita.

@america back atcha!

Liked by america

@america

Hi everyone I want to wish you all a Merry Christmas!!! I wish you all good health and happy New year. I hope and pray we all will have a great year ahead. Maybe a cure? 🙂 anyway hope is good! So hang in there and we can all do this one day at a time. Hugs to all Rita.

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@america Yes Happy Christmas to you Rita and to all the kind people in this group. Thanks so much to all of you

@alleycatkate

@flib…I am still digging to find info on nebulizing silver…One thing I came across was to not mix saline with colloidal silver. Salt will combine with some of the silver ions to make silver chloride, which is less effective against bacteria (purportedly hundreds of times less effective than ionic silver), and is mildly toxic. Maybe a few drops in distilled water might be a thought? There is so much conflicting info on alternative meds…but might be worth checking this out.
Kate

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Has anybody done more research or tried this yet?

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