so true @suenfl, I have written to many and have had replys from some, there are a lot of good people out there working on this but getting our word out will help, I was misdiagnosed for a long time also., just awful.

Yes, good idea, I actually sent the AIT info to two docs at Mass General in Boston. I always say we are a large forum of people. If the drug companies think they can make money, they will do research, say we are thousands, in reality we are. The Canadian trial is phase 2, and they may come to South Carolina for phase 3, not sure. We have to get the drug companies interested in us

What I don't understand is why the Jewish hospital in Denver, supposedly the leader in MAC isn't doing anything new. I wrote to them and they didn't bother to write back. I mean, here they are, cutting edge, with the same old crappy pills they gave me 5 years ago, and they still don't work.

Good question! Since we moved back to Connecticut from Tennessee the doctors here suggested my going there, but like you said “ it’s the same pills!” And this disease has changed my life to the point of having minimal quality and few “good” days.

@unicorn I agree, so I emailed them saying:

Why does it take a group from Israel (AIT-Pharm.com) rather than you, the US leaders in respiratory medicine, to finally derive and test a more effective, (and inhaled) treatment?

As one of the almost one million (and growing) nationwide with a form of NTM, getting little relief from the last-century, ineffective treatments currently in use, I must admit, I’m surprised and disappointed.

Please do better.

Terri Benincasa

email address: physicianline@njhealth.org

So true, I organised a big list of drug/ research companies dealing with antibiotics/other methods of killing bugs for other illness(not Mac) and boomerexpert rang them all and left messages, none rang her back. I have emailed a few and have had replys, some saying they are not planing on testing on MAC at the moment but ask me to tell them about MAC, at least we are getting the MAC name out there with the drug/research companies. If we can all keep doing that it will help.

Excellent. They do have a clinical trial for nitric oxide for MAC going on now in Israel, just not here, go figure

We need to get some real numbers of how many people here have MAC, we need the drug companies to see big dollar signs if they effect a cure.

My family would gladly send me there if there weren’t such unrest in that part of the world!

Those numbers are listed ! They are not accurate, however, because it is not a “reported” documented disease by the CDC. Just since I joined this group the numbers have gone up.