Yes I have worked in the medical field since at least 1974. We have started to see patients in the hospital with MAC so I hope the Nitric Oxide treatment works

Let me know how it goes. I also got an email from him. He said if I could not produce sputum, I would not qualify because that would need to be tested.  I was disappointed. Maybe if several of the group gets it they could share living expenses for the 3 weeks.
 
 

jkiemen What a great idea!!! I would be a lot less scared if I wasn't alone, and with some of you. Can't you just hawk up sputum like a teenager? (I raised 2) It can be taught. I've gotten so much worse in a year, I feel if I wait another yearand get flu or something that I would not make it. Still can move , in good shape, but lungs feel Bad. Be fun to eat and shop together, if we didn't feel too bad. . xo Christa

@unicorn
Thats great that you are accepted into the trial, please keep us informed how everthing goes.
Fingers crossed that it does the trick for you.
Im doing better now and the last three sputums were negative but want to keep the nitric oxide treatment in my back pocket so to speak just in case anything changes.
Best wishes!
Shari

@pfist, Hi Shari! That is music to my ears that your last three sputems came back negative! I remember you said that you had declined taking antibiotics. Did you take any at all, or did the abscesses go away on it's own?

I know, I don't want to get worse.  I have had to have bronchoscopies to get the sputum and culture.  I was disappointed but perhaps if we can put the word out to the group others would qualify.  I guess they need 10 initially. I am also afraid of being
around people with colds and viruses.  Getting paranoid. Can you post to us how it is going when you are in progress?  I read over the consent form and I know it seemed a little scary but they are required to put any potential even is rare side effect in the
form. I had to write forms in my job in the past and to get them approved by the Institutional Review Board it has to be very detailed.

I felt when he said I would not qualify, it made me feel like I will be stuck with the 3 antibiotics that seem to be harder on the body.

@windwalker
My Pulminologis and Infec disease Dr's said if I wanted to take them they would prescribe antibiotics. They did not push for them because my last Ct in May had improved from the previous one. I had been testing positive for over a year and feeling really lousy short of breath and no energy.
My diagnosis was the bad one mycobacteria abcessus.
The treatment was up to three years starting out on iv's for 6 weeks. Truly the treatment sounded as bad as the disease.
But i wanted to breath again. I was going to try anything to try not have to do the antibiotics.
My pulminologist prescribed an airway clearance vest in January and he did a brochialscope to wash out the lungs in August. The vest I do twice a day for half hour while doing my saline nebulizer. Afterwards I am able to produce a lot more sputum.
The vest was expensive but Medicare covered 70% of the cost.
I also am doing Criptolepsis and Biden two herbs which I found out about in the book ~ Herbal Antibiotics by Stephen Bruhner.
So not sure what did the trick but I think it was a combination of all three of these.
The pulminologist said he would do the brochialscope washes 3-4 times a year if needed. If I stay neg doesn't think it's needed.
I plan to keep doing these three changes and not changing anything.
The herbs have had no neg effect and I believe they are a big part also. When I get a cold now I never get a sinus infection while talking these and use to get bad ones. Plus my phlem doesn't turn green with colds now either.
I hope this info helps anybody, even if your already taking antibiotic these things could be added to help your odds of beating this disease.
In the mean time let's hope and pray that scientist figure out some therapy's that are not as invasive has the the antibiotics seem to be.
How are you doing Terri?
Take care
Shari

@jkiemen , Hi Jo Ann. You are aware of getting your eyes and liver checked on a regular basis, right? Also, get that flu shot every fall. We absolutely must be aware of being around persons who have colds, especially in the winter months. I take extra precautions when in public places. For example I grab door handles at the bottom where people rarely grab it. You can tell by the wear of the finish where most people grab. If I am going through a door at a store that other people are holding open just long enough for me to hold it myself; then I reach up high on the door frame and grab it there (not many people reach high to hold the door). Avoid buffet style dining out, think of the many hands touching the handles, ewe! Always use the wipes on the grocery cart handles. Wash your hands a lot, especially after you get home. That is the first thing I do EVERY time I arrive home. We are not germaphobes, bacteria is everywhere, and heavily concentrated in certain places. Just need to be mindful. If you find that you cannot tolerate the BIG 3 antibiotics, seek out alternatives. Word has it, new drugs should be coming out on the market in the near future to treat MAC.

@pfist, Shari, thank you for sharing that info. I will look into those herbs you spoke of. I am glad that you are faring so well without the antibiotics. I hope you will continue to thrive and keep us in the loop. Hugs, Terri

I certainly hope so, have you any insight into the new drugs?