New Diagnosis of MAC/MAI & I'm scared

@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)

@cindyrue...I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)

@cindyrue...I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

This is interesting. I also lost my son several years ago. I was and am still very sad. It is when I started getting sick with MAC.

This is interesting. I also lost my son several years ago. I was and am still very sad. It is when I started getting sick with MAC.

When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.

When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.