(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, you sure have your hands full, with your variations of MAC and Bronchiectasis, and your husband's very serious cancer!! Blessing to both of you.

I have been on the 3 antibiotics since 2007 and probably will be for the rest of my life. Went off for 3-4 months and got very sick again. But I am feeling quite well these days, as long as I follow: 1) taking the meds as prescribed 2) exercise to get my lungs opened up 3) get enough sleep/rest. Managing this disease will be life-long for me. I have a great pulmonologist at a university teaching hospital. Humidity and high dew points affect my lungs, probably like your dust mites. But I'd MUCH rather have MAC/MAI than a stroke or cancer. Yep, you are so right about 'taking back our own troubles'. The disease IS manageable ... it just takes some adjustments to my life to get it right and accept the limitations it brings (limited lung function).

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Melissa, katemn (Katherine) recommends her doctor, Dr. Aksamit. I agree that you should move heaven and earth to have the military get you in to see him. A great doctor can help you turn the corner on this disease.

I wonder why we can't all get in some type of study for MAC/MAI ... find some commonality in why WE ALL have this disease. I live in SE Wisconsin, maybe 6-7 hours from the Mayo Clinic, but would LOVE to participate in a study. Keep us posted about your health and outcome! Am thinking of you.

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Paula, good for you that you take such good care of yourself with your exercise! With all that has been going on in my life I have fallen down on that and I KNOW I need to make that a priority to keep my lungs healthy .. get back on my Nordic Track! I have been VERY blessed to be totally off antibiotics since May 2014 and since this disease can only be stabilized .. not cured .. we all need to be alert to taking care of not only those around us but also pay attention to our own health. Thank you for reminding me!
Serenity and well being to all of us!
Katherine

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Bless you Katerine for your shared inspiration! I to back to my backwoods (LoL) infectious disease doctor in two weeks. He is a very nice doctor, but he specializes in HIV and other diseases, I believe I know more about MAC than he does. The VA lists, MAC as an 'Emerging Disease' and with that I have written my Congressman again, this time sending copies to the CDC and the NIH trying to get some pressure on the Military to send me to the Mayo Clinic to see Dr. Aksamit. In the mean time....I will continue to take shallow breaths, keep coughing this stuff up, knock my fevers and Drive On!!! 🙂

Have a blessed day all!
Best wishes
Melissa

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@melissa23

Bless you Katerine for your shared inspiration! I to back to my backwoods (LoL) infectious disease doctor in two weeks. He is a very nice doctor, but he specializes in HIV and other diseases, I believe I know more about MAC than he does. The VA lists, MAC as an 'Emerging Disease' and with that I have written my Congressman again, this time sending copies to the CDC and the NIH trying to get some pressure on the Military to send me to the Mayo Clinic to see Dr. Aksamit. In the mean time....I will continue to take shallow breaths, keep coughing this stuff up, knock my fevers and Drive On!!! 🙂

Have a blessed day all!
Best wishes
Melissa

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Melissa, I don't know if this might help you .. it might ONLY apply to MY health situation .. but it might help point your doctor in a direction of type of meds. You might also google the meds and educate yourself .. but ALSO understand all the horrific side affect do NOT happen to everyone!! These meds stabilized me with VERY few side affects .. sleep disturbance/some fatigue/time and bother of the inhaled Amikacin .. but I can't really think of much else. As far as I am concerned a small price to pay for my current better health!
My meds prescribed for me by Dr. Aksamit were daily:
Azithromycin 250mg/
Avelox 400mg/
2-Rifampin 300mg/
Amikacin 2ml-inhaled 3x week

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@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.

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

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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.

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@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.

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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. <br />
<br />
Julie

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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.

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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.

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