@unicorn , No I have not forwarded that letter to the Mayo. You may re-type it and mail it to my doctor yourself and ask what he thinks. You could try mailing it to: Mayo Clinic Jacksonville, Attn: Dr. Jack Leventhal, 7th Floor Davis Building, Jacksonville, Fl. you will have to look up the zip code. I am sorry that you are feeling so badly still. You may want to look into seeing doctors at one of the Mayo clinics. I think that the one in Jacksonville is no longer accepting new patients.

@unicorn, Have you ever tried having bronchial washes done? I know of two people that that has helped them. It is a process of squirting saline into the lungs to wash out the infection and gunk. It is done with a bronchoscopy. You can Google this, learn more about it and ask your doctor about it.

Dear Unicorn

You should at least go to the emergency. Don’t fool around with pneumonia because that could be very dangerous.  Have you tried clearlung from health food vitamine store. It might worth it better then not doing anything.  Good luck!

Never heard of it but will definitely request it. Thanks! xo

sophie1019...windwalker is sooooo correct re Wisconsin and its MAC infections...l live in SE Wisconsin....It is considered along with florida Hawaii etc a hot spot...
l drink bottled spring water to avoid tap water....the pipes are full of the biofilms of MAC that are formed. l make my own ice out of the spring water....l do not drink water from hose in refrigerator or use its ice.tdrell

I also live in South East Wisconsin in Walworth County. Do you live near there? I have also heard from a Pulmonologist I went to this week for a second opinion that it is everywhere in Southeast Wisconsin. I heard that well water is better than city water. Is that what others have come to understand?

Companies do have Compassionate use protocols. I think we could petition for that. I can't see how it would hurt to try any options

I live in milwaukee....

We are in pretty close proximity. I am in Milwaukee at least every Friday for work and some weekends. I just went for another opinion with Dr Lipchik at Froedert. He seemed good and at least got some baseline labs on me, rechecked my Immune function which is a little low and VItamin D levels. He said that is the only supplement he would recommend to help immune function. I told him about the research I was doing on Nitric Oxide studies and will send him a copy of what I have found. 3 different companies. Maybe they could get involved with one. Do you like your MD's?

Jkiemen and Sophie1019.... I live close to Milwaukee in West Bend.... my local ID And Pulmonologist are out of Froedert tdrell