(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@chinasmom

I can't tell if pictures came through of my email or not

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@chinasmom I don't see them, unless you are talking about your profile picture. Is that new?

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@jkiemen

I have not been a patient there yet. I know my Pulmonologist tells me they are the best in the nation and my culture specimens are to be sent there. He said if he can't control mine, he will send me there.

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@jkiemen Jo Ann, I have been reading over some of your past posts and came across this one. You stated that your dr said if he/she could not control your mac that he would refer you to NJH. I would also recommend Mayo Clinic. Do you think that time has come?

Liked by tdrell, alleycatkate

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@windwalker

@jkiemen Jo Ann, I have been reading over some of your past posts and came across this one. You stated that your dr said if he/she could not control your mac that he would refer you to NJH. I would also recommend Mayo Clinic. Do you think that time has come?

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@windwalker Hi Terri, has anyone taking a Statin for high cholesterol found it no longer works well while taking the Big 3?
I have now had 4 lipid panel tests showing the Statin no longer works well — it seems to be the Rifampin does it. Also my thyroid meds (Synthroid) don't work well anymore. Anyone else? What did you do?

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@anniepie

@windwalker Hi Terri, has anyone taking a Statin for high cholesterol found it no longer works well while taking the Big 3?
I have now had 4 lipid panel tests showing the Statin no longer works well — it seems to be the Rifampin does it. Also my thyroid meds (Synthroid) don't work well anymore. Anyone else? What did you do?

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Hi! When I took the big 3… I would wake up around 5:am and take my Synthroid and it worked well. It was 3 hours away from the big 3. But I am not sure the time you’re taking yours.

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@anniepie

@windwalker Hi Terri, has anyone taking a Statin for high cholesterol found it no longer works well while taking the Big 3?
I have now had 4 lipid panel tests showing the Statin no longer works well — it seems to be the Rifampin does it. Also my thyroid meds (Synthroid) don't work well anymore. Anyone else? What did you do?

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@anniepie For some resin the Big 3 interferes with thyroid medication. Perhaps your doctor will increase the amount you are on. As for cholesterol meds, since those increase liver enzymes, they pose a problem when taken with the Big 3. I was taken off the cholesterol meds (or at least given the choice) since I needed the Big 3 more. (irene5)

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@irene5

@anniepie For some resin the Big 3 interferes with thyroid medication. Perhaps your doctor will increase the amount you are on. As for cholesterol meds, since those increase liver enzymes, they pose a problem when taken with the Big 3. I was taken off the cholesterol meds (or at least given the choice) since I needed the Big 3 more. (irene5)

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Another thought is that MAC itself interferes with your thyroid. I remembered that before I was diagnosed, my doctor commented on how I had stopped taking my thyroid medication. I told her I hadn’t missed a day since I was 18! That same year I was diagnosed with MAC, and my thyroid has had to be monitored carefully ever since.

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@anniepie

@windwalker Hi Terri, has anyone taking a Statin for high cholesterol found it no longer works well while taking the Big 3?
I have now had 4 lipid panel tests showing the Statin no longer works well — it seems to be the Rifampin does it. Also my thyroid meds (Synthroid) don't work well anymore. Anyone else? What did you do?

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Hi, I have been diagnosed with Mac and some of his friends 🙂 6 years ago and I am on the same dose of synthroid and never had a problem. Some of us can’t use the generic and need the real thing! Also it’s very important to talk to your doctor because if your thyroid is not functioning! You are not going to function also!! All the best 🙂

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@america

Hi, I have been diagnosed with Mac and some of his friends 🙂 6 years ago and I am on the same dose of synthroid and never had a problem. Some of us can’t use the generic and need the real thing! Also it’s very important to talk to your doctor because if your thyroid is not functioning! You are not going to function also!! All the best 🙂

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@irene5 @america Thanks for your replies and your, so much. My doctors have increased the thyroid meds a lot but T3 and T4 ihave slipped down again and TSH gone way up. The same has happened with my cholesterol levels, even while on Statins, and even with Ezitimibe instead. Rifampin uses the same pathways in the body and can reduce all thyroid hormones and increase cholesterol for people who are susceptible because their livers don't clear drugs well.
Thanks for that info about MAC/MAI effects on thyroid Irene — I didn't know that!
Has anyone had Rifabutin instead of Rifampin? Or changed from Rifampin to Rifabutin? I heard it had more side effects — is that true? (Rifabutin interacts less with thyroid hormone).

Liked by tdrell

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@irene5@america I was changed from rifampin to rifabutin-I did not tolerate it-got achy and feverish. Went off it for awhile and tried again-same issue.

Liked by anniepie

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@rmason

@irene5@america I was changed from rifampin to rifabutin-I did not tolerate it-got achy and feverish. Went off it for awhile and tried again-same issue.

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Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin — in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

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Have you considered trying supplements for the cholesterol and thyroid to see if that will help at all?

Liked by anniepie

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@anniepie

Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin — in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

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@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a hypothyroid issue to that must be debilitating for you. The cholesterol issue is a tough one too because of the impact of those meds on your liver. My brother has been in the hospital with endocarditis, the effects of which are reparable with a valve replacement. He is afraid to have the surgery. I told him I was certain if there were a surgery to fix MAC there would be a line out the door for all of us to have that fix! Realizing that bit of “luck” helped him rethink that in a hurry! The MAC road is lengthy and bumpy for many of us. Sending you a gentle hug and prayers.

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@anniepie

Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin — in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

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@anniepie I was on Rifabutin first and had horrible muscle, flu like symptoms and back pain after the first 2 weeks. I was switched to Rifampin. But I did do some reading about doing some kind of desensitation program to obtain tolerance

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I do remember having flu like symptoms also. Rifampin did make me sick 🙁 MAC makes us sick. Grateful for this group and help from Windwalker (Terri) I am much stronger. I have a lot going on in my body and sometimes I feel like staying in bed all day but when I think of how many of you are going through difficult times… I get going and I know and hope we will find a better way to treat Mac. My prayers for us all to keep going!!! Hugs to all! Rita

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@irene5

@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a hypothyroid issue to that must be debilitating for you. The cholesterol issue is a tough one too because of the impact of those meds on your liver. My brother has been in the hospital with endocarditis, the effects of which are reparable with a valve replacement. He is afraid to have the surgery. I told him I was certain if there were a surgery to fix MAC there would be a line out the door for all of us to have that fix! Realizing that bit of “luck” helped him rethink that in a hurry! The MAC road is lengthy and bumpy for many of us. Sending you a gentle hug and prayers.

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@irene5 Thanks so much Irene

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