Update On Treatment of MAC

Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is ‘old school’ and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn’t recommend treatment at all because 90% of the time, the MAC clears up on it’s own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.

Liked by janovr, tdrell, Carolyn

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Yes, Dr Leventhal!

Liked by tdrell

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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

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@ling123

I just spotted this post on Facebook. Since I don’t take any antibiotics for my MAC, I don’t know if there is any value in what is said in this post. But I’m including the link here for people to judge whether it is useful or not. It sounds very scary. But it is not my intention to scare people about drugs. Just wanted to see what other people with more experience with antibiotics think of this. https://mountainsandmustardseedssite.wordpress.com/2017/03/18/this-antibiotic-will-ruin-you/

Ling

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Hello Ling. I did read that article about antibiotics and then went out and bought some Kefir Milk (probiotics)!! I hate the fact that I have to take antibiotics for the rest of my life, but without them, I would be dead. Some doctors overprescribe, some underprescribe. But all in all they are supposed to weigh the benefits against the potential harm they may have. My doctor just did at my last visit say that I can cut my 28 day of tobramycin to two weeks, bi-monthly. So, I did, and will see how I do. Thank you for contributing the article. -Terri

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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!

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@ling123

I just spotted this post on Facebook. Since I don’t take any antibiotics for my MAC, I don’t know if there is any value in what is said in this post. But I’m including the link here for people to judge whether it is useful or not. It sounds very scary. But it is not my intention to scare people about drugs. Just wanted to see what other people with more experience with antibiotics think of this. https://mountainsandmustardseedssite.wordpress.com/2017/03/18/this-antibiotic-will-ruin-you/

Ling

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Thank you for the link. I read every word of it. I believe in reading everything and taking what applies to me and my family. It was very valuable. Doctors and pharmacists don’t know everything and we have an obligation to be researchers too. And let our gut feeling carry more weight than doctors want to give it!! Thanks. Prayer is powerful. I believe.

Liked by ling123

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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@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

Liked by tdrell

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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@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.

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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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.  

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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

Liked by tdrell

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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@tdrell Yes, Terri, you are right about that. I wrote it that way because some newly diagnosed may not know what NTM is.; all they have been told is they have MAC. I wanted Elisse to know that the NTM foundation is for MAC so that she can get some resources.

Liked by tdrell

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@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Theresa, (@windwalker), A question:
Why is it important to see both a pulmonologist and an Infectious Disease doc?
I am a bit confused as to who will help coordinate my care. (My primary care Dr? Pulmonologist? ID Dr?)

I am in Lexington, KY. The University of Kentucky Medical Center does a lot of research and is considered to be a great place for rare or unusual diseases. I called last week to see if they had an I.D. Dr. I could work with and unfortunately they are booking pretty far out because of a shortage if ID docs right now. May end up having to go to Louisville. Dr. Escalante at Rochester Mayo recommends starting Big Three in the next 2-3 weeks. Best, Carolyn

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