About

First Name
Shari

City
Burnsville

State/Province
MN

Country of Residence
United States of America

Postal/Zip Code
55337

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Posts (174)

Fri, Aug 30 6:45pm · In shock after MAC diagnosis in MAC & Bronchiectasis

@windwalker
Yeah for negative results!!

Fri, Aug 30 10:41am · Supplements and the Big 3 in MAC & Bronchiectasis

@jkiemen
JoAnn
I take suppliments also I think in a perfect world we would get our vitamins in our food but the ground is depleted from nutrients. Also many people just don't eat healthy nutrient dense foods like we should.
Everyone should get their vitamin D level checked by their primary Dr.
Mine was extremely low now I suppliment 5000 units a day and its up to where it should be. I live in Minnesota so our sun exposure is limited too. Vitamin D is extremely important to your immune system.
I take C, zinc, magnesium aswagandha and NAC.
What type of glutithion do you use? I have heard of nebulizing glutithion also going to check with my Pulmonologist regarding that when I see him next.
Unfortunately in our healthcare Doctors get very little teaching on diet and suppliments.
Shari

Fri, Aug 9 9:30am · Helpful Devices for MAC in MAC & Bronchiectasis

@cila
Yes Cila
Your doctor submits the scrip to your insurance.
I kinda wished I looked more into the afflo vest instead because I don't like being tied down to the Hill Rom. But then I always do my salt nib and Ventolin nib at the same time so I'm tied down anyway.
Shari

Thu, Aug 8 6:48pm · Helpful Devices for MAC in MAC & Bronchiectasis

@flib
I too have the vest. Mine is the Hill Rom vest and Medicare paid for most off it. But still just the copay was 3000.00. I think it helps. I'm suppose to use it two 30 minutes sessions a day but I don't usually do that unless I'm very congested. But then it also helps if you have a husband or someone to do pounding on your back to loosen the phlegm as an alternate to the Vest.
Shari

Sat, Jul 20 6:13pm · 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