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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo
Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."
Thanks. I do know that MAC is related to Tuberculosis and the 3 antituberculin drugs are Zithromax, Rifampin, and Ethambicol.
Cindy
As far as I know Cindy it is the alternate med in the big three regimen for people who can not tolerate clarithromycin. .
Cindy, I take a 250mg every day along with Rifampin and Ethambutol. I was started out on those 3 in December/Jan, giving it about 10 days in between meds as I began them. Linda M
I did not know that about Zithromax. TB is a mycobacterium like MAc, but unlike MAC, TB can be cured. Two of our children were treated for a full year with Isoniazid due to their BCG vaccinations. They will always have positive skin tests, but have no active TB infection.
hI cINDY, i WAS AZITHROMYACIN, (SAME STUFF) for a year and half and cannot tolerate anymore. Now just using nebulizer and exercise, but I cough up blood also, sometimes a lot. it is so so scary! But, it always seems to stop, so at least we have that. i am kind of afraid to travel because of it. xo
I know. Thanks for sharing.
Cindy
@lindam272, Linda there are several products that pop up when googled .. is the below the one that worked for you? You were really smart to do your "Due Diligence" in researching probiotics .. each of our bodies are different so each of us may have to experiment to find the one that works best for us! Good for you! Hugs! Katherine
Digestive Advantage Probiotic Daily Supplement
https://www.amazon.com/Digestive-Advantage-Probiotic-Daily-Supplement/product-reviews/B00C1C21I4/ref=cm_cr_dp_d_show_all_btm?ie=UTF8&reviewerType=avp_only_reviews&sortBy=recent
@cindyrnc Cindy, personally I CANNOT take a ZPak (Zithromax 500) .. took once and triggered my migraines horribly .. so never again .. I think everyone's side effect might be different .. just tell your doctor. I would NEVER take it again! Hugs! Katherine
That's the one Katemn. I just re-ordered from Costco (warehouse store) and they didn't have that one come up with larger quantities so I just got the Digestive Advantage with Intensive Bowel Support. I've taken for about a week and I'm not sure I've noticed any difference. I think they are all fine as long as they are the Digestive Advantage brand. Linda M
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@cindyrnc You
can ask your dr about alternative antibiotics.