(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I am sorry that you had to join our group. I have found it to be very helpful and have appreciated everyone's desire to help the rest of the group. I don't feel as lost and I am better able to formulate my questions when I go to the doctor.

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

I made it 15 weeks. I got so sick I had to get help from my friends to fix food. Finally had to move in with a friend. Did not realize it was the meds making me sick until I stopped them. Stopped Nov 6 and got a lot better, still not much energy, but was walking 5000+ steps daily and increasing. Tried meds again after three weeks. Took two doses and got very ill. So, that was it for me. Feeling tired even though I am sleeping well. Going home Friday to try staying by myself. My friends will still be helping. I have read a lot, and very few people have been able to tolerate the meds. The few that did had the MAC come back.

Here is a link to some information of this vest therapy: https://www.respirtech.com/incourage-airway-clearance-therapy/frequently-asked-questions-about-incourage-therapy/vest-therapy/

If we have this information maybe we can compile it in a letter to the companies doing the Nitric Oxide studies. Novoclem Therapeutics uses a nitric oxide technology for the treatment of Cystic Fibrosis and other respiratory diseases. http://www.novoclem.com awhitaker@novoclem.com

Contacts
Contact: Chris C Miller, Ph.D. 778-899-0607 miller42@mail.ubc.ca

Locations
Canada, British Columbia
Diamond Centre Recruiting
Vancouver, British Columbia, Canada, V5Z-1L8
Contact: Chris C Miller, Ph.D 778-899-0607 miller42@mail.ubc.ca
Sponsors and Collaborators
University of British Columbia
Novoteris, LLC
Investigators
Principal Investigator: Jeremy D Road, MD Professor

CONTACT
Steven Lisi, Chief Executive Officer
AIT Therapeutics, Inc.
Steve@AIT-Pharm.com

Bob Yedid
LifeSci Advisors, LLC
Bob@LifeSciAdvisors.com
(646) 597 6989

Johannes Lehmann of Technical University of Munich demonstrated that the new inhibitor blocks especially the enzymes Pks13 and Ag85, which play a key role in the development of mycomembranes. beta lactone EZ120

Thank you!

I have taken the big 3 for 3 years. The first year was really realy horrible, queasy, flu like, slept half the day, not with it .GERD, etc(like a bad dream now), it has become a lot easier now, guess my body has become used to them. I still get the GERD but is quite controlled by omeprazole(not completely). I think I have also become better at controlling the symptoms.The big 3 are not an easy ride and we need something that can kill off the MAC not just make it dormant for a while. Very interesting question @jkiemen , will look forward to the answers.

@unicorn so true!

Hi there, I’ll make it a year in March. Definitely have days but all in all I’m doing ok. I’m also relatively young... vitamins & probiotics are essential.

Dear Suenfl,

Meds can be worst than the Mac.  My doctor for the Mac infectiologist (my french friend on this site can tell if it is a good word) said the antibiotics doesn’t get ride of the Mac and can make some people very sick.  When I read how sick some people are

sick on this site I have never been that sick.  I treat myself with natural product.  My last broncho confirm I do not have the MAC anymore. I think it is due to the probiotic of Dr Ohirra i have taken but not sure.  I know one thing for sure that probiotic

give you good bacteria to fight the bad one.  If you eat a lot of sugar it will activate the bacteria they nourish on yeast and sugar according to my doctor.  Having a good diet without, sugar, starch and fried food works good for me.  Stay in good health!