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

@pfists .. Shari, I am going to VERY honest with you. I am VERY grateful you are going to Mayo .. get your fanny there ASAP!! Mycobacteria abscesses is ONE nasty critter .. AND VERY difficult to get rid of .. one of the toughest. How do I know .. as the saying goes "I IS one"!! I had: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES .. and was on antibiotic treatment for thirty months .. it is one of the TOUGHEST to get rid of. Due to my excellent Mayo Clinic treatment .. I have been "stable" from it since 2014. I was on INHALED Amikacin .. but your situation may be different. Get started! Please keep us posted .. we are here for you! Hugs! Katherine

Boomer, I don't mean to frighten her .. but when @pfists Shari said "I have been testing positive for mycobacteria abscesses for a year now." Sorry .. your statement " I’m interested in the natural improvement you’re making without meds; think it’s a good sign you don’t need’em, " is really off base.

I HAVE HAD: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . I FOUGHT it for THIRTY months .. it is one of the most difficult mycobacteriums to bring to "stability" .. you do NOT make "natural improvement without meds". What you DO is create UGLY ABSCESSUS in your lungs instead! Yep! Pretty ugly stuff. I've been there .. done that. I can easily speak as a voice of personal experience. Katherine

@mariposa, Andree, you just sit tight! We are here for YOU .. you are NOT here for us! Do what YOU need to do when you feel best to do it .. let your body be your guide! Hugs to you! Katherine

@windwalker, Terri, it is NOT in our heads! I HATE to say this because it sounds just toooo weird .. but after my husband comes in from his HARD walk or golf .. he needs to take a shower right away .. his sweat sends me into a spasm of coughing .. HOW embarrassing ! Could I admit to to ANYONE but my Group?!! All in my head? Nope because I don't always even realize he has been outside! Tell your husband that .. tell him he's lucky it's just burning toast!! Hugs! Katherine

Thanks Kathryn going to br calling Mayo for a cancellation daily and see if I can get in sooner. Hoping for Dr Aksimit but may have to get someone else on his team.

So you did not have to do IV's?

I got over a case of Narcodia two years ago where I had did Iv's on myself for six weeks then one oral antibiotic for a year. The Iv's were really tough all hours of the day.
Norcodia was rare but the Dr told me this mycobacteria is even rarer. Ugh
Glad I found you all to help through this!

Shari

@heathert .. Heather, this is just GREAT information! Now Girlfriend .. my memory serves me that you found a reliable resource to purchase Acetic acid - did you get 5%, 10% .. what strength did you get based on your research as necessary? AND will you PLEASE share EXACTLY how you are using it .. AND for what! Sorry .. but what a nice thing to have for my Trusty File Cabinet. Heather, take your time but we as a Group would really appreciate it! Again, thank you for the link and Hugs to you! Katherine

re: the vinegar/acetic acid concentration to kill mac, but here is the link : http://mbio.asm.org/content/5/2/e00013-14.full
It is very interesting as NTM is again more difficult to kill.

Amy and JK, if you find what you need there .. great .. if you don't see what you need there .. feel free to come back here to the Main Forum to get your needs met. What matters is your questions get answered with the most updated info! Hugs! Katherine

Hi, All, - I had my check up with my ID doc a couple of days ago. I went with a yellow pad and a page full of questions, primarily initiated from posts on this forum. I also went back and reviewed my sputum text results from the beginning before my appt. I have 2 docs collecting my lovely mucous - my ID doc and my CF doc. I realized in reviewing that my ID doc had the results of a clean test in March and my CF doc had a clean test from me in June! (I started the Big 3 in December 2016 and have taken them every day) So I've had 2 clear sputum tests and didn't even know it. No one told me and I didn't know what I was looking at when I reviewed the results - until you all came along! I just took another sample into the lab earlier this week which I know will come back clear. I've had some brain fog lately - enough to cause a small accident while backing out of a parking space last week. I've also had some other close calls and am having trouble keeping things straight in my business as a Realtor. I mentioned to my ID doc and told him in light of the fact that I have 2 samples clear and that I'm breathing better, I am going off the Big 3 meds. He wanted to keep me on until March 2018 to "be sure" those little buggers were dead. I said - Not happening! I'm off now. They are dead. I know they are dead. So prayers that they are! I have a CT scan scheduled for early next month about 10 days before I go back to see my ID doc and review this CT with my last one done last November. You all - most especially our Mentor, Katherine, are the best! I appreciate each and every one of you so much! I will keep you posted on my final results, but I know it will be a good outcome. Blessings! Linda M

One more thing - for all those using the Aerobika - that needs to be changed out every 6 months. It says it in the booklet that mine came with and I verified it with my respiratory therapist. Just an FYI.

@heathert  Interesting read Heather, thank you for
posting. Wouldn't it be great if we just rinse our lungs in
vinegar??