mycobacteria

how do i connect to people with mac. david

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David I am out of the country so limited wifi .. return to USA October 7 ..could you write me then when I have better access?<br />
Best regards,<br />
Katherine<br />
Friday, 26 September 2014, 11:36PM -03:00 from Mayo Clinic Connect :<br />

okay, I\'ll contact you again when you get back. David<br />
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Thanks David .. I\'m happy to help .. just as others have helped me!<br />
Katherine<br />
Tuesday, 30 September 2014, 10:40AM -03:00 from Mayo Clinic Connect :<br />

Has anyone had vision problems associated with ethambutol? I am 3 months on the drug, 1200 mg/d, 17 mg/Kilo, and I have required 2 corrections for my glasses, and will soon need another. Thanks

Hi, I was only able to take the cocktail for MAC for 9 to 10 mos. and suffered with GI and skin problems too severe so we had to stop. My vision was not affected however, my hearing was and though I've been off the meds for two years now, my hearing did not improve. It seems the time I spent on these antibiotics helped a great bit. I am due for a CT in a month or two and we'll see then how things look for me. I belong to a Mac group on FB that is private. We have nearly 90 members if you are interested. It is a Mac lung disease group and you could request to join if so interested. Nice bunch of folks on there. Good luck to you, John. 🙂

Hi,<br />
<br />
My name is Carole and I'm very interested in joining your FB group. I was<br />
first diagnosed with NTM (MAC) in 2004 at age 62. Went on the "cocktail"<br />
for 2 years and tested negative for about a year. It's back now with a<br />
vengance. No treatment this time...yet, due to poor health. Seeing a<br />
National Jewish doctor next month.<br />
<br />
Would love to read others stories and share experiences.<br />
<br />
THANK YOU!<br />

Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.

I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine

I was on Ethambutol 800mg for I think about 6 months .. began to loss my color and distance vision. Luckily I noticed it .. had a GREAT doctor who picked up on it and IMMEDIATELY took me off it. I then took: Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week until 5/14 (5xwk until 10/12). On May 2014 I became negative .. after 30 months of meds and have been negative since.

Hope this helps. Personally I would NOT take the Ethambutol again. Perhaps I had to take the other meds longer .. but at least my vision came back within a year as good as it was originally!

UPDATE:
Sharon, NO .. I did NOT go on the meds immediately!

I was diagnosed with Mycobacterium avium-intracellulare(MAI or MAC) in August 2007 by a sputum culture.. I REALLY did not want to go on the treatment of 3 antibiotics for 18 mos to 2 years that 2 different doctors called "toxic"! But in 5/11 they found a 2nd Mycobacterium in my lungs that now necessitated 5 antibiotics and I ended up not getting a negative culture for 30 months! I now wish I had done the antibiotics when I was first diagnosed in 8/07 but truthfully I had read so many horror stories on message boards that it scared me.

That is why I feel it is my responsibility to take my time (my husband is very ill) to let others know you will NOT have all the terrible side affects! Each person is different .. each of us has our own journey. BUT we are only given one body for this life time and we must take the best care of it that we can. Go in peace and be blessed by the good things that ARE still in your life. Each day I make sure I am aware of my "gratitudes" and feel blessed for them. There are ALWAYS those with a harder life than I have .. I am blessed with what I have.

WOW!! This is NOT what I have been told by my Mayo Clinic Doctor at Rochester MN!! This disease is called: MAI/MAC. All you have to do to educate yourself is google this phrase. One resource is: https://aidsinfo.nih.gov/education-materials/glossary/1608/mycobacterium-avium-intracellulare-(mai)-infection since it was frequently found initially in the HIV population.

You will note it is: Mycobacterium Avium-Intracellulare (MAI) Infection .. AVIUM WITH AN M .. NOT an N! (avian would indicate relating to birds) I was told doctors don't have a clue .. there is no accurate research as to how it gets in our lungs. Mycobacterium is in water .. in the soil .. all over our bodies .. it just is NOT supposed to be in our lungs. BUT there is NO accurate research showing how it gets in our lungs. PLUS my doctor has NEVER indicated anything about bird droppings since bird would indicate AVIAN .. NOT Avium.

So I am VERY confused as to just what your doctor is telling you because for myself i was ONLY diagnosed with MIA/MAC with a sputum culture which CLEARLY indicated EXACTLY WHICH strain of Mycobacterium I had. He ALSO did CT scans and Xrays .. but it was the sputum cultures that gave him the necessary info to know what to do about the MAI. That led my doctor to then be able to know exactly WHICH antibiotics would work against those two particular Mycobacterium that the culture showed I had . (Dr. Leventhal said that it can only be seen with a CT scan)

I guess my only suggestion is that you do your own "due diligence" and educate yourself about your illness and then don't give up until you have answers that satisfy you .. and your body. Good luck!