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

@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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@ling123 Ling, re: the post on Facebook .. I just IGNORE this type of thing. WHY? Because my reading this type of thing in 2007 when I was originally diagnosed with MAC .. AND LONG before the KNOWLEDGE AND SUPPORT of Mayo Clinic Connect .. I became IMMOBILIZED from reading articles like this! To the point I refused antibiotic MAC treatment until I was diagnosed with a BAD news mycobacterium that creates abscesses in my lungs in 2011 called: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. I have ALWAYS felt that if I had listened .. done the antibiotic treatment in 2007 .. my lungs would NOT have become a breeding ground for the MYCOBACTERIUM ABSCESSUS. But my fear and NOT having our wonderful Connect to discuss things with .. allowed me to “lead from my fear” rather than from my knowledge .. Due Diligence.

So what is the answer? Knowledge .. Due Diligence .. leading to CONFIDENCE in our choices .. then being our own Best Advocate! IF WE READ ARTICLES .. it SHOULD be from good resources .. primarily from say Cleveland Clinic, John Hopkins, Mayo Clinic, National Jewish Health, etc. Hope this thinking helps! Hugs! Katherine

REPLY
@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, I have really been fortunate to get this information before my appointment so I can bring all of this up.

 

Jo Ann

REPLY
@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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@jkiemen, Jo Ann, in case you cannot find it in the past pages in time for your appointment .. I’ll repeat the below . .hope it helps with some ideas of questions to ask! Hugs! Katherine

From my File Cabinet:
QUESTIONS TO ASK OF DOCTOR
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:
_______________________________________________________________________________________________________
Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.
2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?
3. Based on the current progress how long would you project that I would me to be on the medications?
4. What monitoring will I continue to need? When will I need my next: a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)
5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?
6. Do you agree with the current Medication Schedule I am following?
7. Do you suggest any other lung clearance devices? How often/when?
8. What cleaning methods do you suggest for lung clearance devices? Method/How Often?
9. When/how do I still take my stated Prescriptions/ over the counter medicines /vitamins / supplements?
IF SUGGESTED NEW Medication:
1. a. Spelling of new drug I will be taking b. dosing level of each new medication c. what period of time before the next medication d. how long do you expect me to be on the medications e. any new monitoring will I need f. any side effects will I likely to have g. which side effect should be reported immediately h. when/how do I take each of these medications/ what schedule should I follow g. Will I also need new inhalers? h. SALINE NEBULIZED TREATMENTS with Aerobika?

TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a ‘susceptibility panel’ IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin – CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY
OR TESTING:

BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors. )
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase – LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE – KIDNEY

TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the ‘puzzle’ together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/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 negative! 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! Hope this is helpful. Katherine
TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day… my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it’s quality .. ‘ Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.’

THINGS TO CONSIDER:
• Keep copies of all your lab work
• Keep your x-ray/CT scan films yourself, or consider having them done where they can be put on a CD http://ntminfo.org/files/QuestionsToAskYourDoctor.pdf http://ntminfo.org/index.php?option=com_content&view=article&id=50&Itemid=52
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

OR
These questions were written from a patient’s perspective and are not intended as medical advice.
1. What do I have? How do you spell it. Where is it located?
2. Was drug sensitivity performed from a culture? (If not, can it be done while the sample is still viable?)
3. What drugs will I be taking?
a. What is the dosing level for each medication?
4. How long do you expect me to be on the medications?
5. What monitoring will I need? (See examples below)
6. How often will I have:
a. Follow up appointments with you?
b. X-rays/ CT scans
c. Lab work
d. Hearing testing (try to have hearing and vision tests done before starting your medications so they will have a baseline by which to judge any changes)
e. Vision testing
f. Sputum cultures
7. What side effects will I be likely to have?
a. Which should be reported immediately?
b. When/how do I take my medication?
c. Do you have any suggestions for coping with the less serious side effects? (see Treatment Tips from Other Patients for some helpful hints)
8. Will IV drugs be necessary?
9. Will I also need inhalers?
10. Should I use any device? (How often?) Aerobika? Saline Solution Inhalation?
11. Can I still take over the counter medicines/vitamins/supplements? (Be sure to tell your doctor about ALL nutritional supplements, herbs, or over the counter products that you take. These can interact with your medicines, or decrease their effectiveness.)
12. Would I be a candidate for surgery? Why/why not?
13. What if I lose my appetite?
14. What if I feel depressed?
15. Can I exercise? What kind of exercise?
16. What precautions should I take? Activities to avoid?
Some examples of the type of monitoring that may be needed – consult your physician:
Will I need bi-monthly lab work?
Some side effects are especially common with certain antibiotics and need their own specific tests.
Other things to consider:
• Keep copies of all your lab work
• Keep your x-ray/CT scan films yourself, or consider having them done where they can be put on a CD

IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a ‘susceptibility panel’ IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

Liked by tdrell

REPLY
@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

Jump to this post

Thank-you

Good list

 

Jo Ann

 

REPLY
@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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@katemn I thought the post was overly dramatic. Thanks for the advice.

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Very helpful lists, Katherine, as I head to an Infectious Disease specialist on Monday! I am frustrated that my pulmonologist’s nurse called me almost 2 weeks ago to tell me that I don’t have lung cancer, I have MAC. But nothing else. Seems like cruel and unusual punishment to tell someone they have a disease but nothing about it.

I immediately got on the internet and read two articles mentioning high mortality rates. I knew nothing about MAC or about any specific types, so was devastated. (My son’s dad, my ex-husband whom my husband & I helped care for, died two months ago and although they’re in their 20’s, this would be a LOT for my sons to deal with, not to mention our own emotional reactions.)

Anyway, great to have these questions; I’d started compiling them on my own but this really helps!!
Carolyn

Liked by tdrell

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@cld120 .. Carolyn, JOIN THE CLUB! When you say “I am frustrated that my pulmonologist’s nurse called me almost 2 weeks ago to tell me that I don’t have lung cancer, I have MAC. But nothing else. Seems like cruel and unusual punishment to tell someone they have a disease but nothing about it.” That is EXACTLY why I WISH I had Mayo Clinic Connect when I was diagnosed with MAC in 2007 .. it was terrifying! But now my dear .. you have us! You have a wealth of information at your fingertips that you will NEVER get anywhere else .. CERTAINLY not from any doctor or nurse!! I feel for you .. frankly it is about what ALL of us went through! I think it is what makes us all keep coming back to help Newcomers! We SO well remember what it was like for US!!

When you go to your appt .. be your OWN best advocate .. stand up for yourself .. get your questions answered .. remember the doctor is YOUR EMPLOYEE .. YOU are the EMPLOYER! If you do NOT get your questions answered .. THAT is your answer .. that doctor is NOT your best resource going forward! One BIG question to ask: How many MAC patients have you treated in the past year? You NEED to be with someone who knows what they are doing! .. and keep coming back .. we are here for you! Hugs and good luck! Katherine

Liked by tdrell

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@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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Hi, did you ever follow up on that last sputem to get your results? How are you doing now? Terri M.

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@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 was not able to produce anything for the second time with the induction.

 

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@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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Does that mean that you are not infected much by your MAC?

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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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Hi Carolyn and welcome to our group! Funny you should mention the IBS along with MAC’ because when I have looked up one, sometimes the other term pops up too. I have noticed over the years of my looking up the disease I have, I discover co-morbid diseases that tend to go hand in hand together. They fall under the umbrella of Autoimmune & Immunosufficent diseases. You are right to be concerned about taking the BIG THREE with your IBS issues. Those drugs can be harsh. (although some people have little problems with them). I know that the Mayo Clinic is overwhelmed with new patients, but you can make an appointment for way out in advance and then call them on a regular basis to get on the cancellation list. There are other good institutions that are about as close to you as Mayo that are also very good. I am not sure what medical facilities have a good reputation where you live to deal with MAC. Whomever you see, hold that thought that not all answers are getting put on the BIG THREE right off the bat. You can express your feelings about it to your Dr. Tell him/her that you have been educating yourself and what you have learned. Definitely open up that dialog.

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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Thanks so much for your reply & welcome. I am trying to learn as much as possible right now and this forum certainly provides a wealth of information. May I ask which Mayo location you were seen at and who your doctor is?

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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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@cld120 i want to share that I emailed the mayo Jacksonville last week and as promised, they called me within 3 days and I’m scheduled for an appt August 15th. Very surprised how easy it was to get appt and with a doctor I read was well liked on this site. So that’s my experience. Good luck. -Bonnie

Liked by tdrell, Carolyn

REPLY
@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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Carolyn, I go to the Mayo Clinic in Jacksonville, Fl. and see Dr. Leventhal. I understand that they have become quite booked up lately in the Pulmonary Dept. You can try to get an appt there though. Their number for appts is 904-953-0853. Isn’t there a very good research hospital in Lexington? I thought I saw there was awhile back. There are other Gold Standard places to go if you don’t mind traveling to get to them.

Liked by tdrell, Carolyn

REPLY
@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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Hi Bonnie. I am so glad that you got an appointment at Mayo! Is your appointment with Dr. Leventhal?

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