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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
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.
Replies to "New to the site. My story is similiar to many others. Was diagnosed in 2009 after..."
Hi Shelby, I too am new to this site. My daughter found it for me. I have MAC and bronchietasis. Was diagnosed 2 1/2 yrs ago. I did get into Mayo Clinic and luckily got Dr. Aksamit, he is the best! So kind and knowledgeable. I had the dry cough for years, then after being on medications, I got so very tired, just wanted to sleep, no energy, no appetite, lost a lot of weight. My skin turned bronze so I am temporary off the 3 meds for a short time. They check everything at Mayo. I read that women in their late 60's and are fair skin, light hair, get MAC more easily than darker skin women. Also that it can come from being around farm animals, soil, water and birds. I have a twin sister who has not gotten the disease. She lives in a big city. I live on a farm since 1961 and been very active working cattle, hogs, sheep and chickens besides gardening. I think that is how I got mine. Of course I don't do that work anymore, for 5 years probably. Still live on the farm. However at 76, and low energy, I hire someone to
clean my house. Never did that before. I never associated the infection to lack of hormones. Also, the meds never made me sick. I never had any hair loss, a lot of thinning though. So many different problems I have been reading about. Thanks for listening.
I lost hair also ....a wise older cosmetologist said she could tell if someone was well or had issues by hair quality...her mother in laws hair became unhealthy a year before she diagnosed with fatal pancreatic cancer.
tdrell, I have quite a bit of hair loss right now .. but I am quite confident it is due to my thyroid issues. I just this year started to see an excellent Endocrinologist .. wish I had done so YEARS ago. I have been on Synthroid since my mid 40's. He has now put my on T3 as well as Synthroid ..but it is REALLY hard to properly adjust your balance. Too much OR too little can result in hair loss.
So yes, hair loss is really an indicator of health. Our body tell us when something is off! Katherine
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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 />
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Julie