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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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Can you imagine that my primary would suggest such a thing! Pardon my ignorance but what is an IFD? I take a zillion meds and have been going on Drug interaction site and "trying" to figure out a schedule for myself. Need professional help! "An IFD an IFD--my queendom for an IFD"!Terry
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1 Reaction@128128terry11t, Terry, you are TOO funny! However I have ALWAYS counseled my granddaughters to get to know a FEMALE pharmacist! Why? Because frankly doctors have had VERY LITTLE training in pharmacology .. PLUS there is almost zero chance they can keep up with all the new drugs/side effects! SO the ONLY one I depend on is my local highly trained female Pharmacist who is one smart cookie and will advise me on all potentials any time I call her! I wouldn't THINK of depending on a doctor for up to date data on drugs! THAT my dear is why I preach on "due diligence" .. educating OURSELVES .. on options/tips/our disease .. all of it. It is OUR body .. WE have to take care of it and advocate for it .. nobody else is going to do it for us! So my dear .. you just "to the moon"! Hugs! Katherine
@128128terry11t, Terry, need the context for IFD. How/where was it used. That may help us define it! Katherine
Yes, I get the heart for "like" and the flag is for "report." This means if something is inappropriate or questionable, you click on the flag and Colleen or another moderator will respond to the problem. That's my understanding. I have Windows as well.
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2 Reactions@hopeful33250 .. Teresa, Thank you!! Luckily I have never needed to use the flag with my delightful group! Now I guess I am glad I DIDN'T know about it! Hugs to you! Katherine
Terry
I have had all of these side effects! And I still do from time to time.
Azithromycin is the most commonly used along with the other 2 big 3. I had a susceptibility panel to tell me what my MAC would respond to and it was one of the few drugs that will work for me and maybe for you. This panel is done from a positive sputum culture or lavage of lung. Did you have that done.
My insomnia acts up only occasionally now. It took about 3-4 weeks on all 3 drugs and I think I got used to them and relaxed. A big part of this disease for me is keeping my anxiety at bay. It's terrible some days.
Try to do things to calm yourself. Get a little exercise, do deep, diaphragm breathing, stay busy etc. I really think you'll be fine! Hang with us,
Peace
Kay S
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1 Reaction@128128terry11t, Terry, @kaystrand, Kay, what a great response! Thank you! I didn't even think to ask: 'I had a susceptibility panel to tell me what my MAC would respond to and it was one of the few drugs that will work for me and maybe for you. This panel is done from a positive sputum culture or lavage of lung. Did you have that done.'
That is SOOO important .. and I'll bet you dollars to donuts Terry's doctor did NOT do that .. especially with just throwing her on all 3 meds at once! Such good advice for Terry. Again, thank you! Hugs to you! Katherine
Sorry to hear that you went through what I am going through but thank you so much for those encouraging words. You have made my night! I was beginning to think that I was some kind of freak when the ID gal told me only 1% get this reaction. I couldn't believe it ... and now I don't have to! My pulmonologist told me that it was done and that is why I let the ID doctor put me on those meds before going to Denver (called Denver and they said could start something and they would tweak if need be). It is all so confusing and overwhelming. It's your kind of response that grounds me. Thank you.Terry
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1 ReactionCan't seem to find the post now. It was said in the context of getting an IFD to help her arrive at an appropriate schedule of when to take antibiotics relative to other meds and multivitamins. Love to connect with one!Terry
Thanks Katherine
I have an appointment set at the Mayo with DR Askimit next Month.
My Doctor I have now is a pulmonologist and I don't think he would treat this because he didn't treat the last one I had for narcodia...an infection that comes from soil. I was on iv's for six weeks and clarithamyacin for a year while doing nebulized amakacin. The amakacin was a piece of cake so was the claritamycin. But side effects from the iv's put me in the hospital and caused me to lose my gall bladder. I just finished those antibiotics last April. So will have to see what this bacteria is suseptible to.
I saw a test was done to determine that and one was Amakacin.
I will check tomorrow and see if I can get in to my ID sooner to get my questions answered.
A question I have do you know what water filter works for this in the house water system.
I someone mention one for the whole house.
Thank you so much for your help!!!
So glad I found this board.
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