He is also my doc. He is a fine doctor and has a calming demeanor. He will answer all your questions so don't be afraid to come with your list! Rosie

Oh wonderful! I was going to say the same things about him that Rosie did. You will be in very good hands.They know me as 'Theresa Martin from Hilton Head' if you want to mention to him that I sing his praises on the Connect group. When I told him how much I talk about him on this forum, he laughed and said "So you are the one responsible for my big increase in MAC patients!". Good luck with your visit! - Terri

I also was recently diagnosed last month, and my ID physician has me on the Big Three, 3 X a week. My Health Plan is for South Florida. Is there a doctor in Miami anybody can recommend? My first followup is Monday, and had the monthly blood work to check for kidney function. Is this something everybody does? I'm 63, non smoker , non HIV patient. Since I'm losing weight I can't afford to lose, maybe someone can point me in the direction of some specific info. on how to combat the gastro side effects. I'm a bit overwhelmed at this point.
Thank you so much. Elisse K

Thanks so much, Bonnie & @windwalker! I actually just finished appts. at Rochester Mayo and was encouraged to find an Infectious Disease specialist to work with my Mayo doctor, Dr. Escalante, whom I liked very much. I have been prescribed the Big Three, which I'm not thrilled with, but due to the presence of MAC in both lungs, I understand why this treatment is indicated. I appreciate all the info & support this forum provides. Best to you all!

CID120 be sure to get baseline testing ...hearing and vision and blood work...prior to starting the big three...anyother suggestions from folks who have "been there done that?" tdrell

@simonaro1 Hello Ellisse and welcome to our forum. I do not know if you have had a chance to look over some of our older posts, but there is a lot of good info here. If you click on our mentor @katemn, you will see that she has a LOT of good info compiled on her thread. I book-marked what she said about a schedule for taking the meds where it was easier on her stomach, just know that it may not be the same for everybody, because we all are different. Also, there is a NTM (ntm is a synonym for MAC) Foundation down there in Coral Gables. They may be able to put you in touch with a knowledgeable pulmonologist and Infectious Disease Dr. You should see both. Make sure you ask the Dr that prescribed those three meds how many people with MAC he has treated, make sure he knows how to treat. Be sure to get a base line test for your eyesight and hearing, as these drugs can affect those. Your liver will need testing periodically also. ( I go to the Mayo Clinic in Jacksonville ) In Coral Gables, contact: NTM Info & Research, Inc. 305-667-6461 http://www.ntminfo.org

@simonaro1 Ellisse, this schedule is what worked for our other mentor, Katherine.

1. Wake up: take probiotic, Aciphex & Synthroid on empty stomach
(Aciphex-at least 1/2 hour before eating-1 hour after. Separate Probiotic from antibiotic by at least 2 hours!)

2. Wait 30 minutes: Eat breakfast .. .. take regular a.m. meds & vitamins

3. 1 puff Qvar (or whatever the bronchodilater you may use..rinse mouth well .. brush teeth.

5. AT LEAST THREE hours later .. take Rifampin on empty stomach.
(Rifampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour after vitamins)

*( IF POSSIBLE TAKE 2nd PROBIOTIC 2 hours after Rifampin)

6. AT LEAST ONE hour later.. take antiobiotics except Rifampin with a snack.
*OR 2 hours after Ripampin IF TOOK 2nd PROBIOTIC* (Avelox-4 hours after or 8 hour before multi vitamin with a full glass of water)

7. Six hours to Seven hours later take regular p.m. meds (Crestor &Evista) & multi vitamin & Nioxin (zinc)
after evening meal or snack. At least 2hrs (before or after) calcium, magnesium,iron or zinc.

8. Eight hours later take 2nd probiotics on empty stomach. **probiotics must be taken at least two hours after you take antibiotics

9. Nebulize Amikacin. Take nebulizer apart, clean in hot soapy water & sterilize nebulizer!
AVERAGE AMIKACIN SCHEDULE BETWEEN DAY TO DAY-try to stay same every day within 4 hours .. at least within a 12 hour period!

Ellisse, I think the main take-away here is that she takes the Rifamkin on an EMPTY stomach in the middle of the day. Others have said they take all three at night before bed so they can sleep through the side effects. You will also see she takes probiotics, making sure they are hours apart from her meds. Antibiotics kill some of the 'Good' bacteria in our gut, so it is a good idea to replace them with probiotics.

windwalker aka terri,, awesome summary for Simonaro1....only one question....isn't NTM the major category under which the 171 individual bacterium ( that as of july 2016 had been identified) of which MAC is one? so not really a synonym???tdrell aka terri

Thank you so much!  I will be contacting the foundation in Coral Gables tomorrow.  I have my 1st follow up appt. With current ID doctor and already have a list of questions for him including experience with this condition.  
I am so grateful for the info and support. It helps to know I'm not isolated with this mess in my lungs.  

@simonaro1 No mam! You are not alone, we all have that mess in our lungs too. - Hugs Terri