About

First Name
Shari

City
Burnsville

State/Province
MN

Country of Residence
United States of America

Postal/Zip Code
55337

Pages

Member not yet following any Pages.

Posts (170)

1 day ago · Best Shower heads for MAC in MAC & Bronchiectasis

@phoenixrises
The "Shower Clear"
metal shower head flips open and dries out completely then flips shut when dry so no mold or bacteria can build in it. I'm happy with mine. It does produce more of a rain shower than regular aresoled type mist shower.
Anyway Hopefully this helps reduce Mac.
Shari

Sat, Jul 13 10:05am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@megan123
Hi
I have used toby nebs usually.
They have done suseptibility tests too and have used a few other things that worked like cefuoxime or augmentin. I think that if you use the same thing a lot you run the chance of making any particular bacteria resistant to it.
I use to use cipro but won't now because of side effects. Tobys have never bothers me and works well except it cost 70.00 a month for me.
Anyway hope this helps navigate the water for you!
Take care
Shari

Mon, Jul 8 11:27am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker
@ling123
Yes Terri we just need to be informed and then decide if the benefit outweighs the risk of any drug we take. It did state that most adverse side effects don't ever get reported at all though. I know my good friend took cipro for uti and afterwards had several tears in her leg cartridge. I did mention it to her that it could of possibly be due to the cipro.
I know floroquines work really good on pseudomonas where many other drugs don't. I just hope they work on finding antibiotcs that work but don't have some of these side effects.
I have taken cipro in the past also and did feel achy I don't take it now. When I get pseudomonas they do a susceptibility test on it and there has been quite a few antibiotics that show they will work on it and we go with one of those.
Just want people to be informed and it may never effects one person where it would another. We're all so different one person's medicine can be another persons poison.
Take care Terri… I'm glad your doing well!

Wed, Jul 3 5:14pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ling123
Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe it's the fluoride in it that makes it so toxic. I suppose that's the part that makes it effective against pseudomononas and mycobacteria. They need to come up with better alternative drugs.
Shari

Sat, Jun 29 9:24am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie
This SPR720 is something to keep our eye out for.
It is a drug that you would take in combo with others right? I will look for more articles on it.
Thanks!
Shari

Tue, Jun 18 5:59pm · Reverse Osmosis in MAC & Bronchiectasis

@tinaesims
I guess they don't remove Mac but do remove chlorine, fluoride and other contaminates. I usually drink spring water which is suppose to be the good. Anyway I'm hoping it is.
The videos from the NTM conference had a bit of information on it.

https://www.youtube.com/user/NTMir

Shari

Thu, Jun 13 8:13pm · M. Chimaera in MAC & Bronchiectasis

@alm2019
Hello and welcome to connect.
I have not heard of the chimaera kind of mycobacteria either. I also hadn't heard of the kind I was diagnosed with serveral years ago. I had mycobacteria Abcessus.
Is it correct you haven't seen a specialist yet? How many sputums did you have positive for that bacteria? Most doctors wont consider treating until you had a least three positive sputums and a CT scan that suggested treatment. I was one of the lucky ones mine started testing negative after a year of positive tests for abcessus and I did not get any antibiotic treatment. There is a small percent that do change over to negative without treatment. So that's something to talk to your Dr regarding waiting. I hope this bacteria is a slow grower so maybe you don't need to rush into treatment. But again if your symptoms are bad you don't want to wait too long.
Hopfully @windwalker Terri can let you know how her mayo Dr. Does a rotational antibiotic treatment on her and she is doing great with that. I'm sure she will be chiming in soon.
Take care and do keep getting knowledge so you can make informed dicisions.
Shari

Thu, Jun 6 7:31pm · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

@judyhodgern
I tested positive with abcessus for a year but didn't treat it and then my tests started to come back negative for the least couple of years.
Did you have more than one test come back positive?
Do you have symptoms and how is your scans look?
Shari