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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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<br><br><br><br><br>Kay, I read it. I am going to stay in denial. Take great care of myself, <br>but deny, NO defy it!<br> <br><br>
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1 Reaction<br><br><br><br><br>So true!<br> <br><br>
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1 Reaction<br><br><br><br><br>Love lorazepam. Haven't had it in years. I am sure it is very helpful. You <br>will feel a whole lot better after you are all done with your meds and you get <br>back a clean sputem test. Hang in there, it gets better! -Hugs Terri M.<br> <br><br>
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1 Reaction<br><br><br><br><br>To all of you, there is no stigma to take anti-anxiety meds when you need <br>them. We all have a chronic illness that can worry the heck out us. And it <br>IS nerve-wracking to deal with trying to get better, stay better, stay on med <br>schedules, etc. Hugs to all.<br> <br><br>
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3 Reactions<br><br><br><br><br>Excellent advice.<br> <br><br>
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1 Reaction<br><br><br><br><br>Hello. I did not take the BIG 3 antibiotics you all are taking. I am on a <br>bi-monthly cycle of 28 days on tobramycin (inhaled antibiotic with nebulizer) <br>then 10 days off, then 10 days on cipro, then 10 days off, then back on <br>tobramycin. Not sure if this regimen is lifelong as a profilactic or what. I am <br>also in a different situation than the rest of you. I may be needing a lung <br>transplant in the up-coming year and I may not have time on my side to <br>take the three drug regimen. And you cannot be infected at the time of surgery <br>or it can disseminate. (spread throughout your body)<br> <br><br>
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1 Reaction<br><br><br><br><br>Keep on keeping on! You should feel better day by day as the cipro does <br>it's job. Big Hug Katherine!<br> <br><br>
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1 Reaction<br><br><br><br><br>Heather, that was me, Terri M. <br> <br><br>
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1 Reaction@windwalker you have so hit the nail on the head, very stressfull.
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1 ReactionBeatitnowYes, was sick in bed for about a month. Took off work and did little. I was nauseated and ate little but my doc and the Forum encouraged me to stay with it which I did. I gradually got better and feel pretty normal most days. I've been on since 8/1. Happy to say the drugs work. As I said, my doc taking me to 3 days per week, heavier dose. I'm going to be traveling to Europe, so won't have to drag as many drugs!There is an excellent book called Beating Bronchiecstasis- it's very positive and I've been trying to use many of the suggestions for drinking lots of water, eating 7-9 servings of fruit and veggies per day, common sense stuff I need reminders of. This book was recommended on the forum, the forum can be so helpful. The support from Kate and others is awesome.Take care, hope your first few days on meds went well. Yes, we can do this 😉 , but of course!Kay S
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