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

Katherine, @katemn
I don't think your post is weird at all. I'm so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that's my next drug to start so I will certainly try your method and all the probiotic times. That's interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you're drinking it on a regular basis). And thanks for the link to the article...will read that later tonight! You're the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

Katherine, @katemn
I don't think your post is weird at all. I'm so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that's my next drug to start so I will certainly try your method and all the probiotic times. That's interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you're drinking it on a regular basis). And thanks for the link to the article...will read that later tonight! You're the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics...do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics...that's what so confusing. Nan

Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a "subspecies") and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won't kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don't know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a "quick fix" by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my "quick fix" but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don't want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: "If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles." My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic! My attitude is that we are given one body in this life time .. I am willing to use my financial resources to take care of that body best I can! Good for you! Beg, borrow .. NOT steal to take care of yourself!