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(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!
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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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@chinasmom, Becky, I feel the same way .. I tell MYSELF to ignore Connect .. GET THINGS DONE! But truthfully I learn/receive from all of you just as much as I give! Hugs to all! Katherine
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1 ReactionHi Terry, I also have bronchiectasis andMAC. Doc is putting me on 1/2 hour of exercise daily and nebulizer, to get the sputum up. Do you ever cough up blood? Just curious because I do.
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1 ReactionFrom what I understand, the MAC had become resistant to the average hot
water tank temp. Remember hot tubs were set at 104 degrees max, and that worked
for awhile. They became resistant to that temperature. That is why we
should avoid hot tubs. It was never said to NOT turn up the temps in your hot
water heater because it causes these bugs to become resistant. Because the
MAC has been known to be mutated, the water temp should be raised to
at least 120 degrees.
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1 Reaction@unicorn
Hi Crista, I have coughed up a little blood on two diff occassions. It
wasn't much, but it scared the bejesus out of me. I haven't had it happen in
years, due to the fact that I am on alternating monthly antibiotics. I have
texted you this info in more detail previously. It may have gotten overlooked
because there are so many posts. I had replied to your post about this.
hugs!
@unicorn
Hi Crista. The three drug cocktail is the standard for treatment right now. They
are working on future treatments that will be nebulized only antibiotics. They
are still in clinical trials. I was diagnosed in 2005 with MAC and refused the
treatment because it is hard on the liver and two out of three drs said they
wouldn't advise treating it that way. They felt like it was only a 50/50 chance
of working and that it does not cure it and it usually comes back eventually.
So.....I chose to treat it with antibiotics and it worked from 2005-2013.
It came back in 2013 and my dr at the Mayo decided to treat with a rotating
monthly antibiotic. I was on Cipro 500mg 2xday for ten days, then Doxycycline
500 mg 2xday for 10 days. We switched these two out every other month. Then, in
2016, test revealed pseudomonas infection. So now I am on Tobramycin nebulized
2xday for 28 days, then 10 days off, then 10 days on Cipro etc. That is where I
am at now. Have to run now. Hope this helped.
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1 Reactionso sorry Windwalker, I didread your posts.
@unicorn Christa .. it is important to understand that mycobacterium can be "stabilized" according to Dr. Aksamit at Mayo Clinic but not "cured" .. as such we MUST be vigilant about check ups and our personal health care regime .. once those critters are in our lungs they many lay dormant .. but they do NOT go away. We must remain vigilant. Live our lives happily .. but not neglectfully. . remembering that Knowledge is Power! Hugs! Katherine
Crista, you can register with bronchandntm360social.org it is a research
foundation. They would like everyone that has MAC and bronchiecstasis to sign
the registry. That way they have numbers to work with when trying to get funding
for their research. They also need people to do clinical trials.
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1 ReactionFirst coughed up blood several years ago which led me to go to ER. Very very frightening. I was diagnosed by the ER doctor as having pneumonia. I believed that I did not and insisted upon seeing a pulmonologist (our Katherine always advises us to speak up for ourselves). As a result of seeing that specialist I was eventually diagnosed with MAC. Fast forward several years later and I again coughed up blood. I mistakingly called my primary care physician instead of pulmonologist (stupid mistake and I don't know why I did it). He insisted that I go to ER. I did and there I sat in the ER because they admitted me and had no bed. When I arrived at the ER, I told the ER doctor what I had and that I needed a CT scan. He then asked ME "with or without contrast"! I told him "without" and it was then that I realized that I was caught in Wonderland. It's frightening when you know more than the person treating you. After the fact my pulmonologist told me that I that there was no reason to have gone to the ER. The moral of the story is that if you do need to go to an ER because there is a lot of blood and it can't be stopped, make sure that you go to an ER that has an interventional radiologist. Recently, there have been posts cautioning about that need. Sorry for a long answer to your short question. Terry
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3 ReactionsIt leaves me wondering what the heck to do...after being diagnosed with MAC (& bronchiectasis) & going through what you go through after such a diagnoses (quite an emotional tolll), & being prescribed treatment & actually having meds ready, then to getting a third opinion on whether to start treatment & the expert dr saying, "no, wait until you see "it" on a CT scan"... it leaves me in a very uncomfortable place. I'm so confused...but I just try not to worry about it...which we all know, means...YOU WORRY ABOUT IT!!!
I'm awaiting the results of yet another bronch washings culture obtained May 24th. That means it will be about July 5th when I get the answer. So if it's negative, what does that mean...? We know it can harbor in areas of the lung meaning that you might not get from a culture...(am I right in saying that??). Does is make sense to wait until you see "it" on a CT scan before starting treatment?
I was told that a positive bronch washings culture showing MAC, could never be a containment. Again, I don't know if that 100% accurate, but that's what I have been told & what I have read. If it's lying dormiant in my lungs, just settting up camp, do I wait till the monster strike & then call out the big guns & treat?? That's what I am been instructed to do.
What keeps me awake at night, is the thought that these bugs are living inside me (I truly do get so worked up over this...it's the talk of many of my therapy sessions), & I have to wait until there is actual damage in my lungs before I can treat it!?!? I am in no way saying that I am taking the treatment lightly or that I'm ready to sign up....BUT I am soooo SCARED waiting around for the "possibility" of getting "attacked"!
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