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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."

Yes! I'm a masters prepared nurse & have noticed that coming up frequently. One of the sources for MAC has been cited as hospital environment because they keep the water temps below the level that kills MAC. Could that be the variable??

I've noticed there are also a few teachers. I thought the same thing, working so many years with so many kids, if that may have weakened the immune system and made me susceptible to getting MAI. Wondering is certainly not going to change anything for us but if research could find SOME common causes, maybe others can avoid it.

Yes, it would be nice to find a common denominator. I was a nurse first, then a teacher forever (43 years), went to China six times, have two of six Chinese children who always test positive for TB due to BCG, and had a huge amount of dental work which ended ultimately in a mouth full of implants. Those professions and environmental variables seem to increase susceptibility. It really doesn't matter - it's just nice to have a bond with so many people on this forum to discuss all this.

@irene5 I
agree Irene.
 

@ginak I
agree, I am seeing a commonality and that is being exposed to many human
beings.
 

@ginak,
Not only exposure to humans beings, but also in hotbeds of concentrated germs
and illness. i.e. children with colds and flu, hospitals with all kinds of
bugs.
 

@jentaylor,
Hi Jen. I wouldn't say picking up something in another country is unlikely.
Other countries have diff 'bugs' than here. We don't have antibodies from birth
to certain things and can get very sick overseas. That is what has kept me from
going to certain places in the world, because I know I have a weak immune
system. Pretty sure I'd be the first one to catch something.   
There are a lot of unknowns concerning our disease. Again, last Tues at my Dr
appt, he is still scratching his head as to what is going on with me and why. He
said my x-rays and ct scans show mild bronchiecstasis, cannot find major
obstruction to airways, yet lung function has continuously crept downward year
after year with no explanation; to the point of possibly needing a lung
transplant. I asked him if it could be pyschosimatic, he laughed and said
NO! I thought maybe since my mom died at age 58 from Alpha-1 lung
disease; that maybe I was afraid of following in her steps.(genetically
speaking).
 

@jentaylor,
I was thinking your job sounded WAY more interesting!
 

 
@unicorn Hi Crista. I instinctually have been sleeping on my left side for
yrs. I guess it was just the most comfortable. I didn't know your stomach
repositions when you lay like that. I sleep with three pillows. Probably not
good for the neck; but it is the most comfortable for me.
 
 

Hi Windwalker, yes anatomically, the tummy is on our left so if we turn to right, it slips out and up into throat. I wish I had known that right away. I used to have to sleep in my big comfy chair because nice head elevation, until I fell asleep. When I wake spasms gone and I can move to bed and lay flat. The biggest change I made was not eating crazy fatty or sugary foods at night. Now just some fruit or toast around 5, that's it. If I have to eat later, going out to dinner and splurging, then I make sure I walk for at least an hour and that seems to do it, gravity!! My symptoms are really mild now, and I take no medication. I was so miserable before, did not want to live, with my stomach in my throat all the time. Doc wanted to do all these invasive and painful tests also. I said no. I really think the MAC pills I took for 2 years weakened the esophageal sphincter (as my whole body weakened), and caused the GERD.