@unicorn  Yeah, my gerd settled down several yrs ago.Ii do not need
the prevacid except on occasion. Years ago, when it was very bad; I just knew I
had cancer (lol). Scan showed erosion going
on. Things better now.
 

My Doc siad that I should not get shortness of breagth with my MAC, But shortness of breath was how I knew something was wrong, Unfortunatly many docs have alot to learn.

 @heathert Heather,
even the best docs at the best institutions are stumped for the most part. There
is still a lot to learn about these diseases.
 

Hmm...there must be some common link, it seems...?????

@irene5, Yes, it is indeed nice to have a bond with others...I feel so blessed to have found this group of amazing women (not that there can't be a males...there just doesn't seem to be at this time)!!! It's amazing how just having someone truly understand you, can make all the difference! It certainly makes me feel so less alone! Thanks to you, all!!! ~Jen 🙂

@heathert This is something I have come to learn too much. That's why I now favor taking the trouble to go to Boston for anything other than the smallest problems.
JK

@windwalker Hi Terri & all, My friend from Tanzania said something interesting...she said, "You should go see a doctor in Africa...one that can look for & recognize an African disease...not American." That has always stuck with me. I have been evaluated by 44 physicians in the 10 years that I have been ill, including ones that specialize in Tropical Diseases, and no one has been able to put a name to my lung disease. Many have suspected & wondered if it is some disease that I caught while in Kenya. I got sick during my second week there which we thought it to be Malaria but when I came home & was tested (smear), I was negative. We don't know for sure what I was sick with at the time...who knows... If I had a name to my disease, maybe we would know a treatment for "it".

There ought to be a LOG of illnesses/diseases that doctors could then plug your signs & symptoms into & it would spit out a list of other (not violating HIPPA) demos of patients including treatments tried & whether the treatment was a success or not.

It would tract all of these sicknesses & diseases. Maybe then physicians, researchers & scientists could collaborate & hopefully find ways to better diagnose & treat people. I'm all for a NATIONAL REGISTRY...I know there are concerns of privacy but for me personally, I'm more worried about being sick & focusing on getting better than I am of someone knowing my medical profile. Anyway...that's how I feel. I get so frustrated when red tape gets in the way of following trends & reseaching data to ultimately treat or cure various diseases. Best, Jen 🙂

@jentaylor Did
you sign up for the NTM registry? I have. I am not sure if it is connected to a
national registry or not.
 

@jentaylor That
suggestion to go to a doctor in Africa is not a bad idea. Makes me wonder if I
didn't catch something weird overseas? Because the Mayo is still scratching
their heads about why my lung function has deteriorated to this point. In a
related subject; I caught Valley Fever in Arizona. I had a severe case of it and
thought I would die. I moved to Virginia, and anytime I would include it in my
history, the drs would ask me what that was. It is unfamiliar to many doctors on
the east coast. So, your friend's idea is an interesting concept.
 

@windwalker Oh, no I have not! How do you do that? I can look it up...