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Update On Treatment of MAC

Posted by @windwalker, Jun 22, 2017

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

REPLY

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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@katemn I
go to Dr. Jack Leventhal. Katherine, you may have been one of the patients that
was severe enough to require the BIG THREE, also, you may have been put on those
years back when they thought that was the necessary standard. But, do ask
him/her what their current thoughts are on using the BIG THREE. I think
someone on our forum saw Dr Askamet recently and she was confused because he did
not want to treat hers just yet. Wanted to wait and see. Remember she was upset
about waiting for fear of the infection getting worse and damaging lung tissue?
Keep in mind Dr Leventhal said he now treats MAC patients with
 individual treatment plans because there are so many variables. I look
forward to hear what your Dr's take is on this.
 

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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Yes, the Mayo in JAX.
 

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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@windwalker, Terri .. you could be correct about me .. because not only was it 2011 (maybe prior to the “new thinking”) but also because this wonderful Mayo Connect did NOT exist with it wonderful sharing of information .. I was so fearful of going on the antibiotic treatment that I did not go on the antibiotics until I got a SECOND very serious mycobacterium called: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES .. that creates abscessus in the lungs .. very difficult to get rid of .. took thirty months. So I am REALLY happy to get your information .. will confirm it with the Rochester info .. AND will update my File Cabinet so we can keep our Newcomers up to date with the newest info. That is VERY important that we do NOT disseminate outdated or incorrect info on our Connect .. we must CONSTANTLY keep each other updated so we HELP each other .. “Do no Harm”! Thank you for sharing! Hugs! Katherine

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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@katemn There
is hope for all of us.
 

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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@katemn Katherine,
I also wanted to add that when I told Dr Leventhal about how many people on this
thread get put on those BIG THREE antibiotics at their first diagnosis; he was
shocked.
 

@katemn

@windwalker Terri, what is the name of the Mayo doctor who told you this .. you go to the Jacksonville location correct? I go to Mayo Rochester MN on Monday .. I would REALLY like to discuss this after all the misery I’ve gone through!! Thank you for the info! Hugs! Katherine

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I have Mico and pseudomonus. Every time I go to the ID doc she has me leave a sputum and then nevet calls me back. Her explanation is that its “colonizing”. I never called her back after the last sputum. Now I’m coughing so bad! My head hurts when I cough . both infections are resistant to cipro and other antibiotics. And i cant take tobramycin, allergic to it.

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?

@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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@cld120, do you have a first name .. more personal. I am REALLY glad you found us! Welcome! You may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have “been there .. done that”. Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won’t read the past pages of this Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,… concerns .. cares. We will be here. Sending you a hug in this tough time! Hope the below information is helpful! Katherine

From my File Cabinet:

MAC-TREAT OR NOT TO TREAT
I felt like my Mayo Clinic doctor put the ‘puzzle’ of to treat or NOT to treat with antibiotics JUST like a great big puzzle. The puzzle pieces were put together based on the results of the sputum culture results/Bronchoscopy if needed/CT scans/Xray/Pulmonary Testing. THEN deciding whether to treat with antibiotics NOW .. go to quarterly checkups, semi annual .. then to annual .. sometimes then back to semi annual checkups. It is ALL up to your GOOD Infectious Disease doctor who is (IF) KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up checkups to CONFIRM that the MAC in your lungs is STILL “stable”/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still “stable”! Those nasty critters DON’T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

AND

It is not “easy” to get into Mayo or JNH .. BUT persistence pays!! Below are the contacts for getting an appointment .. if I was sitting in your shoes .. here is what I would do:
A. do the necessary initial contact effort at all 3 places Mayo Minnesota, Mayo Florida and JNA. -get an appt so you are on the books .. you can then take the soonest appt and cancel the others (DON’T quote me!) B. you ask if there is a cancellation list .. probably be told NO .. ask HOW you may get an appt sooner-GET THE PHONE NUMBER for the Appt Secretary for the MAC Pulmonary so you can call them directly! C. More than likely you will just have to be persistent .. calling FREQUENTLY to see if there has been a cancellation .. be NICE and get to know them!

MAYO CLINIC and JEWISH NATIONAL HEALTH CONTACT INFO FOR MEMBERS-TWO OPTIONS
1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. @windwalker, Terri shared 01/17 : Mayo Clinic in Jacksonville, Fl. and I see Dr. Jack Leventhal (pulmonologist) he has been a real blessing and life changer for me. The Mayo has an easy to use website with a “make an appointment tab. You do not need a referral. They have a dept to ask if your insurance will cover you there. They are a non-profit hospital, therefore, they don’t gauge on pricing either.

(*FROM COLLEEN: There are few clinics that run at capacity at one Mayo location but perhaps not another. For example the Pain Rehab Clinic isn’t accepting new patient in Rochester at the moment but they are in Arizona and Florida. As you can imagine, the capacity is constantly changing therefore I can’t say for sure when which clinic is at capacity. I would tell members that if they can’t get in at one location that they ask about getting in to another location. And yes, persistence may pay off.)

2. JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q. National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A. I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don’t be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH……for the first 50 years of their existence….1898 til 1958 they did not charge clients..I am on Medicare….they accepted it fully….3 months after my trip….l have yet to see a bill….they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true….but it is there to help people. l beg you to contact them to check.

From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card……no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests….especially as they were added.

Liked by 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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@cld120 Keep trying to get an appt at Mayo. Ask to be put on their
cancellation list. Keep bugging them until they see you. An opening is bound to
open up. Or try another good institutution like Jewish National Health, Duke,
NIH, or others in Ca. if you can afford the travel. IBS is associated with auto
immune disease as is bronchiecstasis and MAC. Many of these disease go
hand-in-hand with co-morbidity. Meaning; they 'go together'.
 

@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, @katenm, for both the encouragement and great information/tips for getting a foot in the door!! My name is Carolyn, not sure why it’s posting as it is with my initials.

Your initial comments are so helpful, especially knowing you and many others have walked this walk. It is terrifying/daunting to begin this journey based on much of what I have read on websites and in research journals/articles. I will definitely turn my attention to this forum to read & learn through others’ experiences, as well!

@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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@cld120 Welcome
aboard Carolyn! We are all here for you! – Terri M.
 

Liked by tdrell, Carolyn

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

I would really like to know the name of your MD and the Mayo Location.

@jkiemen

I would really like to know the name of your MD and the Mayo Location.

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@jkiemen Are
you asking me?  -Terri M.
 

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