Windwalker....do you think it SEEMS like,more are getting NTM but actually the doctors are learning to look for it? Tdrell

Tdrell
YES, it seems many more MAC cases. But, maybe it is just more diagnosed now. Maybe it will get more research attention. It's a shame there is no way it is tracked. Or is there?
Thanks
Kay S

As far as I have been told, it is not legally mandatory to report cases of MAC to the CDC like it is with TB. They have flagged my case in case it comes to that because I made six trips to China and have two Chinese children who were treated with Isoniazid due to positive PPD. I am certain my MAC has nothing to do with that. Positive PPD among international adoptees has to do more with BCG and being given a live virus instead of inactive virus like in the US. If MAC cases had to be documented, I believe things would change for us in terms of treatment. Irene

<br><br><br><br><br>Hmmm, that is interesting.<br> <br><br>

<br><br><br><br><br>Happy New Year! Tdrell, I do not know the answer to that. I wish all that <br>do get this would be treated at a non-profit learning institution like Mayo, <br>John Hopkins, etc. That way data could be collected.   -Terri<br> <br><br>

Indeed there is no mandatory reporting requirement for MAC as there is for TB or HIV, as they are communicable (person to person), MAC and all other NTM's are not. The idea of giving them a mandatory reporting designation could be a double-edged sword: on one side, the real number of infections would be known which would help dollars flow to research on treatments/cure; on the other side, unless designed accordingly, it could compel folks who are asymptomatic to get treatment (as is currently the case with TB) which of course is not desirable...the US DHHS would be the determinor of reporting status and requirements therein.

At the NJH september NTM workshop Dr Falkingham...renowned microbiologist and NTM expert .....told us that the national ( possibly international) microbiologists decided to try to come up with a way to track NTMS. So there is some hope that there will be a way to prove that NTM is a growing issue.......
Llistening to one of the NTM videos from NJH workshop 2016... a speaker mentioned a registry of NTM patients that is being assembled there....I will ask about it when I am ther January 5 to 13. TerriD

That would be the place to do it, for sure! Sorry it took so long for them to figure it out, but better late... Would you mind posting this on our advocacy stream as well?

@marier .. Marie, so glad you found us! As Cila, Terri and Cathy have said .. it is VERY helpful to read the past pages of our Forum .. there is SO much information plus a lot of support of so many nice people that you will find as you read. It is important that you do your "due diligence" in educating yourself about your disease. This is our shared journey .. BUT it is YOUR body .. that you are given for this lifetime .. just ONE body for this lifetime that you MUST take good care of! Start by educating yourself .. a good first step! Plus keep coming back to our Forum .. we are ALL here for you! Sending you a hug in this tough time. Katherine

Hello @krz4ua, do you have a first name .. makes it so much more personal! Curious .. what were the 14 injections? Being told that you will be on the meds on the 18 months at least is pretty typical. Lucky you had the CT scan etc and you were finally diagnosed with the MAC. If you read the past pages of our Forum you will learn a great deal about our MAC disease .. it will help you greatly in communicating with your doctor! Plus you will find a lovely supportive group of people who share your MAC journey. Glad that Colleen supplied the link for videos .. we have the links on our Forum. Hope you keep coming back to our Forum! Sending you a Hug! Katherine