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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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Katherine, I used your notes from your previous post to make my schedule, but didn't realize I could take probiotics and Rifampin together. That makes life a little easier! I will take both at 7am and at 10am with Zith at 8 with breakfast and Ethambutol at 2, 4 and 6pm. I may try to take a couple Ethambutol together as I seem to be tolerating those pretty good. Having a little trouble with the Rifampin today, so I'm hesitant to double up on those just yet. Will see how I do the rest of the day. You are the best!! P.S. Can I take vitamins 4 hours after my last Ethambutol? If so, I could take at 10 and not have to do in the middle of the night.
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1 ReactionWhat magnificent (that is the right word) tips. I feel, for the first time, that I am not alone.Thank you all.Terry
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2 ReactionsLinda, my notes say YES! It says: or antibiotics 4 hours after multi vitamins. However unless your vitamins cause nausea or other issues .. I really like that idea! Absolutely no possibility of an issue.
Also I happen to find in my notes: Have V6 and V12 checked. MAC treatment can affect both Vitamin 6 and 12. See: https://www.ncbi.nlm.nih.gov/pubmed/6269259 and http://factmed.com/study-ISONIAZID-causing-VITAMIN%20B12%20DEFICIENCY.php
You might request to have that checked periodically .. frankly I find many of us are aware of more issues than our doctors!
Good luck on this our share journey! Hugs! Katherine
@128128terry11t, Terry, you definitely are NOT alone .. you have just been lucky enough have found the nicest community of caring supportive people that I just WISH I had had available to me when I was first diagnosed. I remember I was so scared .. felt so alone. Even if you do have a family or friends .. they can't really understand what you are going through .. the emotions .. the fears. That is why I do what I do .. I just don't want anyone to ever feel what I felt. Know that we are all here for you .. just lovely people you will find out! Hugs to you! Katherine
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1 ReactionI think my local ID Dr. has not had much experience with MAI. Thank you for your support, tips, and hug. I truly can feel it. Having difficulty navigating the discussion board but hope to get the hang of it shortly. I have been taking the rifampin at bedtime and NOT sleeping even with xanax or ambien. I will change the way I take that for certain and thank you for that and so much more. I take synthroid and seem to be having hyperthyroid symptoms. Who knows! Very nervous, tachycardia. Maybe from pills -- don't know yet. Is one of the antibiotics notorious for causing tachycardia and extreme nervousness? I take a zillion other pills. I tell people I have so many conditions, I am surprised that I do not have a prostate problem (I am a female -- need to say that because of name.)! I will take synthroid at nite as separate from the rifampin as possible. Words are inadequate to describe my gratitude.
Returning an even bigger hug, Terry
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1 ReactionCan't believe I found you all! It is such a gift ... beyond measure. You know MORE than the doctors around here and I live in the NYC area!! I know that I am not alone and feel so comfortable with all of the caring people that are sharing their journey so that a newbie such as myself can learn the tips that can be life altering. Terry
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1 ReactionHi im sophie. I started the 3 meds in july 2016. At first was sick to my stomach a lot, but now i feel really good. I go see my pulmonogist every three months, get eyes checked every three months, got my hearing tested, and go for blood work and chest x-rays every three months. Its a lot to meep up with, but i have to and you can do it... i was very depressed at first, but with the support of family and friends, i will be fine... and you will too. ..
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1 Reaction@128128terry11t, Terry, as you read through the past pages you will find in time that you may end up knowing MORE than MANY doctors you meet up with! If I may .. you might try calling around various Infectious Disease Doctors .. ask: How many MAC patients have you treated in the past 12 months? Try to find one that HAS been treating MAC patients!! When you find one you will be better off! Even if you have to drive a little bit .. within reason of course. Just remember .. you MUST be your own best advocate .. educate yourself .. that is the very best thing you can do for yourself! Sending you a hug! Katherine
@sophie1019, Sophie, thanks for jumping in with your support and tips for Terry. You so well remember how scary it is in the beginning .. we are all in this together .. the same journey! Hugs to you! Katherine
@128128terry11t, you're right Terry, we ARE right here .. every step of the way .. each of us in our own way .. each of us on our own but shared journey! Hugs to you! Katherine