Update On Treatment of MAC

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 Welcome
aboard Carolyn! We are all here for you! - Terri M.
 

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 Are
you asking me?  -Terri M.
 

@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

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

Jo Ann

@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

Thank-you

Good list

Jo Ann

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