(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

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

Hi Paula I think we need to do that, may help with prevention alot!

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@heathert

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.

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Hello heathert, I don’t remember that I had cavities .. had nodulars. For me I did not start treatment with just the one mycobacterium .. delayed treatment until I got a 2nd serious one called : MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES

.. because it was a pretty serious type .. I started on 5 antibiotics .. cut down to 4 but it took me thirty months to get twelve negative cultures. That Abscessus was a pretty stinky one! But don’t forget .. each of our bodies are different ..so timing will be different! Don’t be discouraged! Katherine

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@heathert

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.

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Hi Kate I read that you were on 3-4 antibiotics for 6 years before the 30 months on Amakacin and 5 antibiotics. I was wondering if the easier first diagnosed type of MAC strain, was it Intracellulare, was cured before the Amakacin treatment or if the amakacin got rid of both types of mac that you had? sorry its very confusing I know it took the amakacin to get rid of the abscessus but did the other strain of MAC that you had, get cured while on the first 3 antibiotics? I hope I have explained this ok.

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@heathert

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.

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No, heathert, that is incorrect thankfully! I ONLY was on the 4-5 antibiotics (including the inhaled Amikacin) for a total of thirty months .. and have now been stable since May 2014. By diligently doing all the antibiotics and the inhaled Amikacin .. I was home free! It took care of BOTH the strains of mycobacterium! You will be ok .. just stick with it .. tough I know .. but from my understanding the FIRST try at treatment is the MOST important. Frankly I don’t remember why .. but that it is important to be successful the first time .. that was one reason I kept at it for those thirty months .. I was DETERMINED to win!! Those darn little critters were NOT going to get the best of me! I hope you take that same way of thinking .. you will come winning also! You go girl! Hugs to you! Katherine

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@heathert

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.

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Hi katemn sorry it was in a post under your name but now I see that it was laura lynn and you were just replying to her post. Thanks for the advice, I will do my best to get rid of the blighters! Thanks for your support!

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@boomerexpert

Thanks for your help and support, C. I too look forward to participation – already one terrific idea, and one that was sent to the FDA!
One minor adjustment that I wanted to make but was unable to edit once discussion was started; perhaps you can do this from your end: I neglected to include MAC/MAI in the discussion heading so folk know precisely what condition we’re talking about…possible for you to do it?
T

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That data has been collected which is why we know highest concentration locales (FL, CA, WI, PA, LA) – what hasn’t been done…SURPRISE!!!…is the follow up to determine the reason for it…particularly, as you mentioned, that WI & PA aren’t coastal (although WI is on Lake Superior)…

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@boomerexpert

Thanks for your help and support, C. I too look forward to participation – already one terrific idea, and one that was sent to the FDA!
One minor adjustment that I wanted to make but was unable to edit once discussion was started; perhaps you can do this from your end: I neglected to include MAC/MAI in the discussion heading so folk know precisely what condition we’re talking about…possible for you to do it?
T

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An excellent idea…so yes, put this idea on the new discussion thread I created – we can gather data researchers can use!

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Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria but my chest scans are showing indications. My doctor, who I trust and regard highly, has recommended chest scans every three months. When it comes time he will cleanse my lungs, as I understand with a saline solution and begin antibiotics. What concerns me so much is that I am told I will not be able to work for 16 months. I am on my own and have worked as a teacher at the same school for 31 years! And, yes, I love the kids. It makes me so sad to think I will have to stop – also risking losing my house.

This is the first time I have seen a site where other people talk about their experiences. I am sixty-four and am also working with a very proactive internist to help me through the weakness and weight loss.

Well, I guess this is the beginning of my journey. And I WILL keep educating myself. Very best, Kathryn

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@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

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Kay, in answer to your question. And by the way…sorry for the delay in response, but I work long hours and haven’t the time to check in often.

Once the drugs were out of my system, the Rifampin was replaced with Levofloxacin 750 MG (in my opinion equivalent to
RAT POISON). I was kept on Ethambutol and Azithromycin. This lasted about a month and a half. The (L) drug affected affected my joints starting with my knees, spreading to my hands. I was in constant pain and could barely walk or get out of bed. If I sat on the floor, I wasn’t able to get up without assistance. Being new to this drug business once again I let it go too far before unequivocally telling my pulmonologist that he had to take me off the Levofloxacin. I was frightened about the long term effect of this drug & seriously thought I might end up in a wheelchair. It worried me to the point that I went to see a internist who practises integrated medicine in addition to running a Cancer Center. My pulmonologist is very knowledgable about MAC, but his focus is on eliminating the disease, he seems to be not as concerned about the side effects. Which is why I ended up in the internist’s office.

Dr Mehta the internist explained that he works as a adjacent to my primary Dr & proceeded to give me a list of supplements to take, such as Host Defense/ My Community Mushrooms (Immune Support), Ginger, Vitamin C 500 MG, Fish Oil tabs 1100 MG, VSL#3 Probiotic. He also had me sign up at the Wellness Center for Yoga Classes and has me doing breathing exercises at home by following a yoga video on You Tube and drinking tons of water to flush out the system.

Once I was off the Levofloxacin my drugs were reduced to Ethambutol 400 MG & Azithromycin 600 MG. Within two weeks my knees & muscles were feeling better and I had mobility again. This lasted for a few weeks and then I had another set-back with hives again. This time they were very itchy and difficult to get rid of. Dr Hull attributed them to the Azithromycin and took me off drugs for 10 days. Now I’m on the Ethambutol and Clarithromycin 500 MG.

So far so good. Dr. tells me I’m running out of drug options. Right now I feel healthy, no coughing or weakness. I walk almost every day. Take yoga 2-3 times a week, work out in the gym and participate in boxing class. My husband and I recently went Zip-Lining in the Carolina’s. 11 Zips and 3 rappels, more physical than I expected, but I held up well.

Staying active seems to be the key for me & modifying as needed. I will not allow this disease to change my life-style or depress me, though at times it has seemed insurmountable. You have to roll with it and find the options that work best for you. Stay strong and speak up if something doesn’t seem right, I had to learn that lesson the hard way. Kay, I wish you all the best, be well.

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Welcome Kathryn, this is a tough time for you .. we have all been there! I am SO glad you found our Forum .. you will find a lot of really nice and supportive people here. All at various points .. but ALL on the same journey. I would suggest to you that you request that your doctor do what is called a “sputum culture” for MAI/MAC. That is how many of us were finally diagnosed. That is also how a doctor can tell what type of antibiotic will work for that particular type of mycobacterium IF the culture comes back that you do have it. BUT DO NOT put the horse before the cart! Do NOT pre judge that you have MAI/MAC .. wait the 2 months it takes for the sputum culture to come back. But that is a VERY good way to get diagnosed.

A question I would ALWAYS ask ANY doctor is: how many MAI/MAC patients are you currently working with? Kathryn .. no matter how much you trust and regard a doctor .. YOU are the one in charge of the only body you are given in this life time .. AND a doctor can be the nicest person in the WORLD .. but NOT be the most knowledgeable about our crazy disease. Sorry to say it ..but it’s true. Just do your ‘due diligence” and take good care of yourself. Start by requesting the sputum sample .. reading through the pages of this Forum .. you will be amazed how much you will learn! AND be reassured that YOU WILL NOT get all the side effects that each and every other person gets. Your body is yours.

Frankly I just don’t see your not being able to work for 16 months .. and CERTAINLY not losing your home!! YES .. IF and I DO say IF you end up being diagnosed .. I DO see that you will have to rest more .. in the beginning you are going to be more tired .. you might have to ask for some of your probably reserved sick time just to adjust to the meds .. you might have to make taking care of YOU instead of everyone else a priority .. hmmm that may be a new idea for you huh?! .. AND you might even start to baby yourself just a little bit! YEAH! As a caring teacher I’ll bet it is just standard for you to always make everyone else first .. now is the time to make YOU first! Just remember that we are all here rooting for you! Keep coming back .. we’re here to help you along on your journey! Sending you a hug! Katherine

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@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

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Katherine, I just posted a long winded reply to Kay regarding my journey with MAC. Have to agree with you, Due Diligence and recognizing the signals your body sends you is vital. Thank you for all your support and good information.

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@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

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Suzie, quite interesting your reaction to Levofloxacin 750 MG . I saw my Internist today requesting a travel prescription for Levofloxacin 500 MG -1 per day for 10 days. This is the 2nd time I have requested .. gotten the same lecture about her recently receiving BIG warnings from the FDA .. SEE http://www.fda.gov/Drugs/DrugSafety/ucm500143.htm

My problem is that nearly all other antibiotics other than Cipro trigger terrible 48 hour migraines .. and I just got VERY ill on a trip with either pneumonia or bronchitis .. and am now planning another trip .. thus was requesting this travel prescription.

So your note above is right on with the FDA warnings. I just read the website .. will make me VERY careful on my trip to only use if absolutely necessary!! Best to all! Katherine

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