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.

Katherine, Alumni Mentor | @katemn | Aug 9, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Paula, thanks for that information. I just went back and checked. The last time my VD was checked was May 2016 .. it was a "Value 77.9" with a Ref Range of "30.0-80.0 ng/ml" .. so thanks to you I double checked to see where I actually was! I now will watch it and see that I for sure stay in the normal range. Thanks for the heads up! I do take 3,000 IU per day. Katherine

REPLY
cila | @cila | Aug 9, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Thanks Katherine, I will do that and I will check it myself. I will try to eat some fruits and veg. to increase my vitamin A & B instead of pills. when I see my Dr. in 3 months do they do CT scan? How do they find out if the meds. are working? Thanks for all the advised. Cola

REPLY
Katherine, Alumni Mentor | @katemn | Aug 9, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Cila, in terms of the Vitamins .. you need to request that your doctor request it when you have your blood work done. In terms of your antibiotics it is really your pulmonologist putting a puzzle together in my opinion based on my experience. It is looking at your previous CT scan .. your current one .. looking for any changes .. sputum samples changes .. AND asking questions on how you feel. That is why it is important to have a doctor who is knowledgeable about MAC/MAI .. they need to put all those pieces together to come up with a diagnosis of just where you are at the current time. At least that has been my experience. By the way .. I just have my local Internist check my Vitamin levels .. not that difficult .. can be done right along with other blood work if requested. Good Luck! Katherine

REPLY
cila | @cila | Aug 9, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Thanks Paula, for the info. you have been taking vitamin D for a while? Sometimes I feel bad for my stomach for all the pills I take b/c I usually don't take that many pills. My primary Dr. didn't tell me how long I need to take them. I appreciate your help.
Cila

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Aug 9, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger - scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

@cila, I've been taking prescription Vitamin D for about 4-5 years, as well as the 5,000 IUs the other 6 days/week. They are very small capsules & quite easy to swallow. I live in a cold winter climate - not much sun exposure in winter. My lifestyle was that I worked 50-60 hrs/week at a computer. So I was not getting much sun, a great source of Vitamin D. However, I've since learned the sun is not necessarily a predictor of Vitamin D level - and low Vitamin D is thought to be related to a variety of ailments/diseases.

I, too, didn't take many pills at all before being diagnosed -- a multiple vitamin and daily calcium and that's it.
I think my Vitamin D level was

REPLY
heathert | @heathert | Aug 10, 2016

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

REPLY
8 replies
heathert | @heathert | Aug 10, 2016
In reply to @katemn "Hello Jill, you are so correct! As you know I am big on "due diligence" and..." + (show)
@katemn

Hello Jill, you are so correct! As you know I am big on "due diligence" and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

Hi Kate and all, my specialist said she was at a MAC confrence in USA in May 2016 and they were saying that Rifampin was causing to many other problems so now they advise taking with food. I cannot find this information anywhere else. I would like to now if any one else has had the same information from their specialist. I am hesitant to take with food with all the other information in Rifampin but want to trust my specialist.

REPLY
jillnc | @jillnc | Aug 10, 2016
In reply to @katemn "Hello Jill, you are so correct! As you know I am big on "due diligence" and..." + (show)
@katemn

Hello Jill, you are so correct! As you know I am big on "due diligence" and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

I have taken it with food since I started taking it in May.  My pharmacist said it was fine and the Dr mentioned taking with food, so I knew no different.  When people still started talking in here that it should not be taken with food I did some googling and found 1 site said it's fine to take with food, it may reduce effectiveness by 30%.<br><br><br>

REPLY
heathert | @heathert | Aug 10, 2016
In reply to @katemn "Hello Jill, you are so correct! As you know I am big on "due diligence" and..." + (show)
@katemn

Hello Jill, you are so correct! As you know I am big on "due diligence" and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

Thanks Jill, it is so hard to know whats best when everything is changing all the time. Maby they should give us a bit higher dose to compensate and take it with food to help our stomach. This is such an evolving situating, makes it very difficult to know what to do for the best. Think I will take without food if stomach is all good but when stomach is already burning will take it with food.Take care

REPLY
Kay Strand | @kaystrand | Aug 10, 2016
In reply to @katemn "Hello Jill, you are so correct! As you know I am big on "due diligence" and..." + (show)
@katemn

Hello Jill, you are so correct! As you know I am big on "due diligence" and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

Jump to this post

Jill
How have you been feeling since starting meds? I started 9 days ago. I'm much better than I was when I got to full dose this past weekend.
I just feel a little shaky, loss of appetite and don't sleep as well as normal. Did you ever get to feeling pretty normal?

Thx
Kay

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