1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

mimi68 | @mimi68 | Aug 3, 2016

I had my first appointment with a new infectious disease doctor that recently moved to our area. He is very familiar with NTM’s and I was able to get a lot of information from him. I have been waiting for the results of the last 3 sputums that have been at the lab for the past few weeks. My pulmonologist has been testing me for MAC since I tested positive on 2 previous sputums. Yesterday, the ID doctor said that the latest sputum tests are showing mycobacterium fortuitum, which is in the same class as MAC, only it is much faster growing than MAC and only requires 2 antibiotics for a minimum of 12 months, taken daily.

He also said there is a possibility that I have both MAC and m.fortuitum. If that’s the case, I may have to take 4 or 5 antibiotics. He also said there is much more research on MAC than on the other, therefore, I haven’t been able to access much on the internet about m.fortuitum. I have a follow-up appointment with him in 3 weeks and at that time he will have a more accurate diagnosis and we’ll discuss treatment.

I’m wondering if anyone out there has been diagnosed with m.fortuitum, and/or if any of you have any information about it.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 3, 2016

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

REPLY
5 replies
mimi68 | @mimi68 | Aug 3, 2016
In reply to @katemn "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...." + (show)
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Thank you so much for your kind words of encouragement. I am so happy that I found this blog and signed on. We are all in the "same boat" and it's nice to listen and talk to others with similar issues. My ID doctor is familiar with this blog and he did put in a good word for it as well.

REPLY
Kay Strand | @kaystrand | Aug 5, 2016
In reply to @katemn "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...." + (show)
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Katherine
I started Rifampin 3 days ago, in addition to Ethambutol and star azythmycin tonight. The Mayp phamacist said to take them at night.
Last 2 nights I can't sleep, insomnia and nausea. I was feeling so good and wondering did you have this and did it pass after a time. I'm so exhausted from not sleeping.

What time of day did you take yours? I take BP meds in AM.

Thanks for suggestions
Kay

REPLY
jillnc | @jillnc | Aug 5, 2016
In reply to @katemn "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...." + (show)
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Kay I am on all 3 antibitics as well. First day I took the R one in the am and the A and E ones at dinner.  I felt nausea after dinner so I started taking the A with lunch and the E with dinner and that seems to have helped me.  I think the A has less side effects when taken with food and without other meds...at least for me. Good luck finding what works best for you.<br><br><br>

REPLY
Kay Strand | @kaystrand | Aug 5, 2016

Jill, do you have trouble sleeping?
I think it's the Rifampin...2 hours last night and I'm wiped. Thinking I should take it in am. Do you take it, when, and any sleep problems? I always sleep great so it must be the drugs.
Thanks
Kay

REPLY
1 reply
jillnc | @jillnc | Aug 5, 2016
In reply to @kaystrand "Jill, do you have trouble sleeping? I think it's the Rifampin...2 hours last night and I'm..." + (show)
@kaystrand

Jill, do you have trouble sleeping?
I think it's the Rifampin...2 hours last night and I'm wiped. Thinking I should take it in am. Do you take it, when, and any sleep problems? I always sleep great so it must be the drugs.
Thanks
Kay

Jump to this post

Kay I've never had issues sleeping...ever, thank goodness.  Yes I take the Rifampin right after breakfast.  And usually by bedtime it's out of my system as my urine is clear again.<br><br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Aug 5, 2016
In reply to @katemn "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...." + (show)
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Kay, here are some notes I took when I was on the antibiotics .. this is what worked for me .. each person is different and I think you kind of have to play around with it .. but this is what helped me. I HOPE it helps you. I know how tough it is in the beginning .. my heart goes out to you .. just stick with it .. it does get easier. Let me know how it goes .. please! Sending you a hug! Katherine

My notes:
NOTES ON TAKING ANTIBIOTICS
Wake up a.m. and take probiotic on empty stomach
Ripampin (odd feelings in legs at night) 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and p.m. probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)

REPLY
Kay Strand | @kaystrand | Aug 5, 2016
In reply to @katemn "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...." + (show)
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

Jump to this post

Kate
I'll try this. Rifampin in AM then? Just not clear on that.

Also, my sleep seemed fine on Ethambutol but went south w Rifampin. I start Azithromycin today for first time. Will take w food at lunch instead of tonight, since sleep was a problem for you with it.

I know we're all different, but I'm so uncertain now I am happy for suggestions.

I can live with nausea but I need my sleep!

I so appreciate your help. I'm trying to figure this out to make it work!

One last question, did the sleep and nausea get better after awhile?

Thanks, Kay

REPLY
Sophie | @sophie1019 | Aug 5, 2016

The meds do not affect my sleep as I did not sleep good before I even knew I had MAC. I am going thru the hot/cold flash thing, tossing at night, but I cannot blame the meds......

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