(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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).

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.

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

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

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

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 />

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.

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

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.