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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon starting me on the antibiotics that I start a probiotic .. I being ever the researcher found no one probiotic has all the various strains of probiotic. (just one source of info is: http://www.drdavidwilliams.com/probiotic-strains/ )
So that is why I decided to rotate 3 different brands of probiotics .. and to seek out the probiotics with the MOST billions. And yes .. my understanding is that the refrigerated brands are the very best but after "fooling" with them for a few months I just went with the unrefrigerated ones and I was ok.
My only reason for that was the complexity of my medication regime .. I purchased several fishing tackle boxes with 18 squares each .. parceled out my medication/probiotics/vitamins ALL at one time!! That way I only had to open those darn bottle once every 90 days!! All my prescriptions are written for 90 days .. one co pay .. one hassle to set up my meds & vitamins. One hassle .. then no worries! Worked for me!
Hope this info helps you .. peace on our shared journey!
Replies to "@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon..."
@carroll Hello Carroll and Welcome! So glad you found our Forum! I am hoping someone pops in that does have pulmonary microbacterium chelonae. Myself I was on 4-5 antibiotics for thirty months for two different strains of mycobacterium .. have now been stable since May 2014.
Personally am SO glad you are off that Pic Line .. I once googled “Pic Line Infection Risks” and was pretty turned off. My guess is that this antibiotic route will be a good one .. hopefully as your body adjusts the side affects will wear off.
My suggestion to you would be to read through the previous seven pages of posts .. you might well pick up some ideas about timing of meds that might help you. You will find that each of our bodies is different .. so you may have to experiment a bit to find out just what works best for you. Remember .. we must take good care of our bodies .. so it can take care of us. Our bodies are our friends .. we are given just one body in this lifetime .. cherish it! Keep us posted on how you are doing .. this is a very supportive Forum .. we are all on a shared journey! I am sending you a Big Hug and positive thoughts! Katherine
Hello Ana, I just came across a GREAT Probiotic! It is: NOW PROBIOTIC 10-50 BILLION. The best price I have found for it is at Amazon.com
http://www.amazon.com/NOW-Foods-Probiotic-10-Billion-Vcaps/dp/B0031RJXCK/ref=sr_1_2_a_it?ie=UTF8&qid=1465156239&sr=8-2&keywords=probiotics+50+billion
It has: 50 Billion and Healthy Intestinal Flora*, KEEP REFRIGERATED TO MAINTAIN POTENCY
•10 Probiotic Strains,
•Dairy, Wheat & Gluten Free - Vegetarian/Vegan Formula
DARN! .. as I researched this for you .. I just realized I have 3 bottles in my drawer .. I have NOT refrigerated them!! Good thing I am letting you know about this .. will refrigerate immediately! Indeed I have read in the past that the best probiotics DO need to be refrigerated.
Just read something interesting on probiotics .. thought I'd share:
http://www.nowfoods.com/Quality/Quality-Notes/088797.htm
Hope this helps you! Katherrine
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Hi I am new to this site. I don't know if anyone else has pulmonary microbacterium chelonae? I was diagnosed at 42. It's been six months that I have been on three different antibiotics ocean. Was feeling better but had so many side effects from the tobramycin picc line that I had to stop. Started new antibiotics and started feeling the symptoms again. Has anyone started feeling worse on the meds?