(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

REPLY

I am looking for patients that have MAC to learn about their meds and sidemeffects

REPLY

My husband was just diagnosed with MAC and put on the cocktail of three drugs they give to treat the disease.
After day one on the drugs he was miserable he was fatigued couldn’t eat and was just miserable. He was suppose to be on these 6 pills three days a week . Any body have this experience

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

I was diagnosed with Mac the 7/52015. I am on 3 antibiotics (2700mg) per day. I want to know when will I stop feeling so tired? I struggle to eat. Abdominal pain, nausea etc. when I try to clean the house I struggle to breath.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

I took Calcium D Glucarate once a day. I do not know why it worked but it did. It was not recommended by a doctor but a friend who follows alternative medicine. I was successfully on 3 drugs for 16 months. I did lose about 10 lbs but my appetite improved and I started to feel better after taking the above mentioned calcium D Glucarate which I bought at a local health food store. It is worth a try as I too felt terrible during the first month.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Thank you so much for replying, I will defnately give it a go. I don't
think anyone knows what it feels like. I hope I don't have to take the meds
after 12 months anymore.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Well, I do know what I felt like and it was pretty awful but I think not as bad as chemo. I would go back to bed at 11 am as I just did not feel like getting off the couch. But I think as time goes by the body adjusts somewhat. Hope the calcium D Glucarate works.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Hello BLC and Maryke and Jill,

I was diagnosed with MAC about 7 years ago.- also known as NTM for Nontuberculous Mycobacteria – see info here: http://www.nationaljewish.org/healthinfo/conditions/ntm/
(I’m not Jewish but this is a good site.) See my post above from March 2013.

I am on the regime of the standard 3 antibiotics. Originally I took the drugs EVERYDAY and I barely tolerated them. Was nauseated, occasionally throwing up, lethargic. My pulmonologist told me about several of his patients with MAC and what they do to overcome the side effects of the drugs. He told me to ‘find what works for me’, to feel better on the drugs. I tried taking them at night, or in the morning, after eating, before eating — lots of different things. Taking them 1-2 hours before I went to bed, after eating, seemed to help the nausea. After 18 months, I got a new fabulous pulmonologist – an expert on MAC. I gradually felt better. After 3 years, I was going out of the country and negotiated with my doc about going off the drugs, which I did. But after 6 months I was really ill again. Was put back on the drugs but this time taking them only 3 days/week. Been doing it ever since with little side effects. I take them with orange juice when I get up in the morning, and tolerate this just fine now compared to taking them every day! For me, I’ll most probably be taking them for the rest of my life. I’ve had 2 lung biopsies and one lung lavage (wash) over the past 7 years, to see if things have spread.

Besides the drugs,MY DOCTOR RECOMMENDED SEVERAL OTHER THINGS I need to do to help myself feel better. (1) Get some form of exercise to get my lungs expanding — Yoga or strenuous walking or Pilates, etc. I tried Pilates after being diagnosed seven years ago and have been doing it 2-3 times a week since. This definitely gets my lungs expanding, as I cough when doing Pilates – which is a good thing! I also get out and briskly walk when I can. (2) Plenty of rest — getting warn down is really easy with this disease. And getting enough rest (whether it’s being asleep or merely resting) is important. (3) Get enough Vitamin D, since there is a connection with this and MAC – doctors don’t yet know what the connection is.

Also, have your eyes examined early by a very good ophthalmologist. One of the drugs can drastically affect your vision. And have your blood checked regularly, per your doctors orders, since your body is filtering these drugs which can cause liver or kidney issues.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Hi Jill
Thanks for the info. I am going for my CT scan in 2 weeks time, then
the doctor will tell be if I can start doing some exercises. It feels
like someone has broken my chest bone and rib cage. Luckily I don’t
cough that much after I started on these antibiotics. I have been
sick for 5 months before I got diagnosed. I also drink my meds with
orange juice. I split my meds in 2. I take 500mg in the morning and
the other 1800mg at night. I struggle to eat and try not to eat after
6 at night and nothing to heavy. Sometimes I feel fine (as fine as I
can feel) and then I am so tired my chest pain, and my ears ache my
neck ache. It feels like I want to roll in a ball and climb in a
hole. I feel blue and bruised. But I think I am starting to cope. I
am a housewife and my in-laws moved in as I was diagnosed, so it still
feels a bit weird for them to do everything. My mother in-law says I
should leave the medication and go the herbal route. I am to scared,
because I don’t want to take a chance.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Definitely not the herbal route only. It sounds like you were very advanced by the time they figured out what was wrong. I think it is hard to cure MAI and many people probably do not stick with it long enough to be cured. The herbal remedy might make you feel better but it won’t cure the condition. Let your mom-in law help and tell her how grateful you are. Hopefully, in a few weeks you will feel better.

REPLY
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Maryke, I agree with Jill – not the herbal route only!! Per my pulmonologist, it’s much easier to cure TB than MAC – – can cure TB in six months on the drugs. MAC is a stronger form of the bacteria. So take your prescribed meds. I too felt like an elephant on my chest … but after a year on the drugs, that feeling subsided and now occurs when I’m in hot, humid weather. You really do need to ‘baby’ yourself along the way with this. It’s nothing to fool around with. Your in-laws can be a real help to you. Thank them for their help and care! Try to walk, exercise, build up your strength in your lungs and chest. It does take time so pace yourself. Blessings to you and Jill.

Paula Stroud

REPLY

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

REPLY
Please sign in or register to post a reply.