Connect
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@ling123, Well said Ling, my sentiments exactly.
-
Like -
Helpful -
Hug
1 Reaction@joan912, Again, Joan, you are a dear to help your husband. Please do keep us in the loop.
@boomerexpert , I hate to say this, but I live in a small town with very few pulmonologists, all but one is up there in age. They all tell all of their patients that they have either COPD or asthma. That's it, everyone is thrown into one big lung basket. No sputem tests are ever done and their equipment is old as the hills. I was told the same thing, but, no, I actually had MAC/bronchiectasis. That is why I travel 2 1/2 to the Mayo Clinic.
@windwalker I thought the Tampa Bay area was bad....where do you live?!
Dear Cila,
Like you I do not have problem breathing but like you I have that problem hurt in my chest when I eat or drink. I haven’t explore that aspect yet. I will ask my lung Dr tomorrow because my appointment was postponed tomorrow. Thank for sharing.
If you take medication it could be a secondary effect from one pill . Check the secondary effects of the medication you take if anything for whizzing and being tired.
@boomerexpert , I live in Hilton Head, S.C. All of the drs here stink in my opinion. It isn't just the pulmonologists here, it is all of them. For example, I have a heart condition and went for my annual checkup at the cardiologist and he didn't even put a stethoscope to my chest and take a listen! He just asked if my meds were still working. I have not been back to him or any other dr here, and I won't ever again.
@joan912, Joan, I don't know anything about this.Has anybody else here? Have you tried 'Google' to see if there is any info there? I like to go to medical institution sites like Mayo Clinic, NIH, Cleveland, NJH, etc. for info sources because they are legitimate. Their sites allow you to look up diseases and treatments. You could enter in 'Amakacin Injections' and something should come up. Sometimes articles from the residing physicians will also come up. I like to read their publications because then you can get a firsthand account of how effective their treatment are or are not.
Thank you, Terri. I read several instances on this blog of folks who are on inhaled amikacin. My husband wants to add this to his regimen. I'm pretty sure the doctors at Kaiser won't be willing to do this, since they've already suggested he not take any drugs, though bronchiectasis has now been found in his other lobe, and he has fevers and night sweats again.
I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb
My pulmonologist put me on the inhaled amikacin ALONG WITH the meds as I have not cultured negative. I am pretty sure that this was from a recommendation from National Jewish to do so. Terry