(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

@jms64

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.

Jump to this post

Hi everyone
After being diagnosed with MAC in the beginning of 2015 I have now
been diagnosed with TB and are on the meds for 2 mnths. I have been
in hospital for a week with pleurisy. The pain in my lungs are
killing me. I just feel sick the whole time. I am sick and tired of
being sick and tired!!!!!

New to the site. My story is similiar to many others. Was diagnosed in 2009 after coughing blood. First was told I had phemonia and bronchietasis, was given AB and sent home. Took over a year of different Dr’s to agree to CT scan. I was on the 3 drugs for 2 years, seemed stable, they took me off meds, MAC came back after 6 months, stable after a year, then went to 3 days a week only, good for another year, then it came back again. Now we’re probably going back on every day. Most times I feel pretty good. Never thought I’d be on these drugs for over 6 years. I know there are worst thing to have but it’s frustrating because most people have never heard of this nor I ever meet anyone who has had MAC. I read you were wondering what commonality MAC patients have, my suspicion is it may have some relationship to menopause hormone depletion. About the same time I had MAC symtoms I suffered hair loss and was told I needed hormone therapy since my levels were so low. Perhaps the lack of hormones create an immune disorder or very low resistance to infection. Just a though. Anyways, look forward to continuing everyone”s progress and stories.
Thanks for listening.

@suttonmac2009

New to the site. My story is similiar to many others. Was diagnosed in 2009 after coughing blood. First was told I had phemonia and bronchietasis, was given AB and sent home. Took over a year of different Dr’s to agree to CT scan. I was on the 3 drugs for 2 years, seemed stable, they took me off meds, MAC came back after 6 months, stable after a year, then went to 3 days a week only, good for another year, then it came back again. Now we’re probably going back on every day. Most times I feel pretty good. Never thought I’d be on these drugs for over 6 years. I know there are worst thing to have but it’s frustrating because most people have never heard of this nor I ever meet anyone who has had MAC. I read you were wondering what commonality MAC patients have, my suspicion is it may have some relationship to menopause hormone depletion. About the same time I had MAC symtoms I suffered hair loss and was told I needed hormone therapy since my levels were so low. Perhaps the lack of hormones create an immune disorder or very low resistance to infection. Just a though. Anyways, look forward to continuing everyone”s progress and stories.
Thanks for listening.

Jump to this post

It appears to me that the med’s may be a life long thing. Does anyone have low white cell and platelets after being on the med’s for over three years ? I went off the med’s for a few months to give my body a rest and see if my blood count goes up.

Julie

Liked by Tim R.

It may be unrelated. I had my blood count checked the 1st 2 years and not since. It’s been 6 years now. I think the blood count check was related to the illness, not the meds. You may have a reaction to the type of med you’re taking. It would be interesting to see what the Dr. says. Yes, med are likely a life long thing. Hopefully, the side effects and effectiveness will improve in the future.

Maryke, you’ve also been diagnosed with TB and pleurisy??? Oh my, that’s a heavy heavy load to handle, with MAC/MAI. Pleurisy is VERY painful – let us all know how you are doing! My thoughts and prayers are with you.

@suttonmac2009

It may be unrelated. I had my blood count checked the 1st 2 years and not since. It’s been 6 years now. I think the blood count check was related to the illness, not the meds. You may have a reaction to the type of med you’re taking. It would be interesting to see what the Dr. says. Yes, med are likely a life long thing. Hopefully, the side effects and effectiveness will improve in the future.

Jump to this post

Julia and Shelby — my pulmonologist does my blood workup twice a year – due to concerns with the 3 meds that can cause liver or bone marrow (I think) issues. Also, when diagnosed, my vitamin D level was very low – under 4 – and he says there is some connection to this and MAC/MAI although they don’t yet know what the connection is.

@Paula_MAC2007

Maryke, you’ve also been diagnosed with TB and pleurisy??? Oh my, that’s a heavy heavy load to handle, with MAC/MAI. Pleurisy is VERY painful – let us all know how you are doing! My thoughts and prayers are with you.

Jump to this post

Paula,
When I was misdiagnosed with pneumonia, I did suffer from pleurisy for several months until I was finally diagnosed with MAC. It does go away when the inflammation gets better. It may not be directly related to the MAC or TB, but when the whole area has inflammation, I think all parts of the lung are effected. I think it is more common with pneumonia. I also take at least 5,000 units of vitamin D. Lately it’s been discovered how important D is to maintaining healthy lung tissue.

Liked by Paula_MAC-2007

Shelby, since my Vitamin D was extremely low, for the past 3 years my doctor prescribed 50,000 IUs of Vitamin E once a week (I take it on Wednesdays). The other 6 days I take either 5,000 IUs (in the winter) or 2,000 (in the summer). Has remarkably upped my Vit D levels! I’d recommend everyone check out their Vit D levels — especially women since we deplete vitamins/minerals/hormones due to age and our cycles. I would sure like to form a study/research group, where doctors can study us for similarities and figure out WHY we got this and not our next door neighbors or women relatives. Quite a mystery. Stay well!

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

I can’t imagine dealing with Cancer and MAI. I was on three drugs until I
couldn’t tolerate the rifampin. It gave me chills, dizziness, rash. I’m
only on the 2 others. My guess is that the rifampin is giving you side
effects. Most people do OK on the other two. The side effects also go away
over time. Also must take good probiotic to counteract the meds. Keep us
posted how you are doing.

Nick, oh my, you have my sympathies!!! Like Shelby, I can’t imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor’s orders — and exercise (ie walk) as much as you can to get your lungs working at ‘full’ capacity (for you) and get plenty of rest/sleep. I’m on all 3 meds – for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and ‘powering down’ mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the ‘expert’ in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs – and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That’s been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.

Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You’ve certainly got your hands full — please keep us periodically updated on how you are doing. We’re all in the ‘club’ together! And CONGRATULATIONS on retiring!

@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

Jump to this post

Nick, you have found a good source of information and support .. stick with it! These are all good people of good will I have found!

For myself I found on my 30 months on Rifampin the only side affect was sleep disturbance. So I made sure I took it first thing in the morning with food. That seemed to help with my sleep some. I will say that after I stopped the Rifampin .. sure enough my sleep improved. My instinct that the problem was Rifampin proved to be correct.

Good luck on your journey toward taking care of yourself . the advise you have been given I can only second!
Katherine

@Paula_MAC2007

Nick, oh my, you have my sympathies!!! Like Shelby, I can’t imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor’s orders — and exercise (ie walk) as much as you can to get your lungs working at ‘full’ capacity (for you) and get plenty of rest/sleep. I’m on all 3 meds – for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and ‘powering down’ mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the ‘expert’ in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs – and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That’s been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.

Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You’ve certainly got your hands full — please keep us periodically updated on how you are doing. We’re all in the ‘club’ together! And CONGRATULATIONS on retiring!

Jump to this post

Paula, It’s amazing how similar your case is to mine. I was on meds every
day for 3 years, then off. It only took a fews months before I got sick
again, but a whole year of meds everyday to get back to feeling as I did
when I first went off. After that year of recovering, I was put on 3 days
a week but he upped the ethembutal (1500mg), not decreased. Maybe I would
have done OK on every other day, but on 3 days a week, it came back. I
don’t know what all that means. Either I was sicker than they thought and
the dose wasn’t enough of maybe I’m building a resistance. Time will tell.
Take care. I enjoy hearing from everyone. It’s a lot of insight since I
don’t know a soul who has this illness.Hang in there Nick,we are all so
lucky to have this in 2015, we’d have never survived before the discovery
of antibiotics

Here I am johnlk. I have just started on this site. I am an 86 yr old white male WASP. Well not P i am LDS since 1988.
Have had MAC the not so bad kind with nodules in the lower portion of lungs for past 2 @ half years. Finally diagnosed for sure this past Sep. Up till 2 years ago I have been very healthy for my age and active. Now not up to doing much and need lots of rest. I had severe phemonia 4 years ago and probably lowered my imunity since then. I was a career pilot in the RCAF in Canada for 21 years and have PTSD so cosiquently have a lot of disturbed sleep that doesnt help one to be rested.
Also had a lot of surgery in past 3 years. With atrial fibulation, had pace maker and surgery to open up caritoid artery to clean out plaqe blockage. Surgery on face for malinoma. Have elected to just be monitored and not take drugs for the MAC. To live as healthy as possible and try to build up my imunity. After all at age 86 I will probably die of some other cause than the MAC or not live until the end of a drug treatment plan. I dont need any more day to day living discomforts than I am already loaded
down with. At present half a flight of stairs is enough for me without a rest.

I would be particularly interested in hearing how it is going for other patients who are not on a drug plan for MAC but are trying to let their own body fight the MAC without drugs. I already take 4 RX for my other conditions.

Just now I dont have the stamina to do much exercise just get through the day.

Best wishes to all. John

@johnlk

Here I am johnlk. I have just started on this site. I am an 86 yr old white male WASP. Well not P i am LDS since 1988.
Have had MAC the not so bad kind with nodules in the lower portion of lungs for past 2 @ half years. Finally diagnosed for sure this past Sep. Up till 2 years ago I have been very healthy for my age and active. Now not up to doing much and need lots of rest. I had severe phemonia 4 years ago and probably lowered my imunity since then. I was a career pilot in the RCAF in Canada for 21 years and have PTSD so cosiquently have a lot of disturbed sleep that doesnt help one to be rested.
Also had a lot of surgery in past 3 years. With atrial fibulation, had pace maker and surgery to open up caritoid artery to clean out plaqe blockage. Surgery on face for malinoma. Have elected to just be monitored and not take drugs for the MAC. To live as healthy as possible and try to build up my imunity. After all at age 86 I will probably die of some other cause than the MAC or not live until the end of a drug treatment plan. I dont need any more day to day living discomforts than I am already loaded
down with. At present half a flight of stairs is enough for me without a rest.

I would be particularly interested in hearing how it is going for other patients who are not on a drug plan for MAC but are trying to let their own body fight the MAC without drugs. I already take 4 RX for my other conditions.

Just now I dont have the stamina to do much exercise just get through the day.

Best wishes to all. John

Jump to this post

Hello John .. WELCOME!
If you choose to not do the antibiotics .. the other thing I do and have found very effective is that I have found through a bit of research a Homeopathic Practitioner who is also a practicing Pharmacist (for 17 years and still works as a pharmacist for the health insurance!). Despite going to the VERY BEST doctor a Mayo Clinic for my care .. I have found the Homeopathic remedies given to me by my Practitioner to be the most helpful with my horrific coughing that just absolutely racks my body. Over the course of the past 4-5 years she has changed that remedy several times and it has made a definite difference in my coughing and overall well being.

As I told my Doctor at Mayo Clinic .. I don’t understand electricity either but when I turn on the light switch .. the light turns on .. I don’t care that I don’t understand Homeopathic Medicine .. I just know it WORKS! Fact is .. when we travel in Europe .. beside nearly every pharmacy .. right next door to it is a Homeopathic Pharmacy .. that is how accepted it is in other countries. All I can say is that for years it has helped me. But I also did the antibiotic routine .. but left with Bronchiectasis and this terrible coughing.

Please login or register to post a reply.