1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Mar 5, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

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@windwalker, good answer Terri, thank you! Personally I also think someday they are going to find there is a genetic factor. Why? Because BOTH my husband and I had compromised immune system .. have lived together for all these years under EXACTLY the same conditions .. I got MAC .. he DID not .. go figure! That is WHY I feel confident there is a genetic component ..

PLUS I have had some MINOR genetic work done and have found that I have the Alpha-1 Antitrypsin Deficiency

The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.

I did not smoke a day in my life .. STILL got MAC! Hugs! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017
In reply to @caroldelanelittleld "I am new to this forum as of yesterday..I live in Houston and feel I have..." + (show)
@caroldelanelittleld

I am new to this forum as of yesterday..I live in Houston and feel I have excellent Doctors...
My quest for answers actually began by accident...Long story short I was in the office of a renowned ENT.doctor with one more problem in a long list...I had very large crater like lesions on my tongue.. This came up suddenly and were very painful... This Doctor told me when he had seen these in his practice they seem to always signal underlying disease... usually an immune disease..He sent me to an immunologist ... She diagnosed me after many extensive blood panels and a CT scan with a immune deficency...CVID.. by this point I had extensive lung damage... I am treated for the immune disiorder with IG infusions... and I do stay free of pneumonia etc...but the lung deterioration continues.. so i was sent to a pulmonary Dr...and she susoected MAC...i have only now had tthe bronchosopy and will have to wait for all the test to come back and cultures....
I am in a city with a very excellent medical center but...I have learned to try to seek out the best care I can find and try to be my own advocate.... Doctors are so specialized now that you could present with a broken arm and no one would notice if it was not their specialty....
I feel fairly well but... my lung function ( I have had two CT scans since first of year) is going so fast that for the last two weeks I have stayed inside my home .. almost bed fast...because of extreme fatigue and no breath..
My primary Doctor has an excellent reputation and I have gone to her for several years...she did send me to the ENT doctor who sent me to the immunologist... thus the chain finally started working if maybe by accident...

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Me again. I just looked up CVID. That is a tough thing to deal with. Along with good treatment and taking care of yourself, try to maintain a positive attitude. Since you were recently diagnosed and receiving the infusions, hopefully they can stall or halt your lung deterioration. Can also look to Eastern Medicine in conjunction with your current treatment, known as 'Complimentary Medicine'. I have had good luck with accupuncture myself. Dr. Andrew Weil has good books on complimentary medicine. I hope you stay in the loop here and let us know how you are doing. - Terri M.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

Jump to this post

<br><br><br><br><br>You and I have discussed the Alpha-1 deficiency before. My mother died from <br>it at the age of 58. I am a 'carrier' of the gene and supposedly have enough of <br>the protective protein in my lungs; but my level is super close to the cusp of <br>not having enough. I can't help but wonder if it really isn't enough. You know? <br><br> <br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Mar 6, 2017
In reply to @katemn "Dear All, This is the question form I use when I see my MAC/Bronchiectasis doctor. This..." + (show)
@katemn

Dear All,
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. Can I still take my stated over the counter medicines/vitamins/supplements?

IF SUGGESTED NEW Medication:
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

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=34805http://cid.oxfordjournals.org/content/31/5/1209.fullhttp://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

Jump to this post

Dear All, please keep in mind .. VERY little of this question form is original to me! I am a great copy/paster! I could not for the life of me identify just where it all came from .. but just wanted to clarify it is NOT from this little pea brain of mine .. I am just a good organizer! Hugs! Katherine

REPLY
boomerexpert | @boomerexpert | Mar 6, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

Jump to this post

It's no longer opportunistic...now hits folks with normal immune system...one of the many reasons research more urgently needed (not that it wasn't before, but now anyone can get it...)

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 6, 2017
In reply to @beatitnow "Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic..." + (show)
@beatitnow

Katherine, you have been so inspiring. Has your MAC/MAI come back at all since your antibiotic treatment? You were on antibiotics for 3 years? Are you willing to give me your contact information? I have just been diagnosed with MAI and I am supposed to start the 3 antibiotic treatment real soon. Is this disease curable? I have read yes a 30% chance, and I have read "no", just manageable. What has your doctor mentioned? Thank you SO much for your help! You seem to be such a kind lady and we are lucky to have someone so caring on this site.

Jump to this post

<br><br><br><br><br>Really???! That's not good!<br> <br><br>

REPLY
Linda | @llwortman | Mar 7, 2017
In reply to @caroldelanelittleld "I am new to this forum as of yesterday..I live in Houston and feel I have..." + (show)
@caroldelanelittleld

I am new to this forum as of yesterday..I live in Houston and feel I have excellent Doctors...
My quest for answers actually began by accident...Long story short I was in the office of a renowned ENT.doctor with one more problem in a long list...I had very large crater like lesions on my tongue.. This came up suddenly and were very painful... This Doctor told me when he had seen these in his practice they seem to always signal underlying disease... usually an immune disease..He sent me to an immunologist ... She diagnosed me after many extensive blood panels and a CT scan with a immune deficency...CVID.. by this point I had extensive lung damage... I am treated for the immune disiorder with IG infusions... and I do stay free of pneumonia etc...but the lung deterioration continues.. so i was sent to a pulmonary Dr...and she susoected MAC...i have only now had tthe bronchosopy and will have to wait for all the test to come back and cultures....
I am in a city with a very excellent medical center but...I have learned to try to seek out the best care I can find and try to be my own advocate.... Doctors are so specialized now that you could present with a broken arm and no one would notice if it was not their specialty....
I feel fairly well but... my lung function ( I have had two CT scans since first of year) is going so fast that for the last two weeks I have stayed inside my home .. almost bed fast...because of extreme fatigue and no breath..
My primary Doctor has an excellent reputation and I have gone to her for several years...she did send me to the ENT doctor who sent me to the immunologist... thus the chain finally started working if maybe by accident...

Jump to this post

Hello: I am also a huge fan of complimentary medicine especially acupuncture. Just be very sure you have a trained professional who has credentials and always uses new sterile needles. Acupuncture and relaxiation have helped my nerve bundle pain greatly since I had VATS surgery for lung cancer.
Linda

REPLY
boomerexpert | @boomerexpert | Mar 7, 2017

I'd been undergoing acupuncture for a few months...wasn't sure if it was helping but I was symptom free, after all.... After 3 weeks, I'm feeling worse so it was helping more than I understood. I have a highly skilled practitioner who is handling both my lung issues and my RA... Find someone exceptional and you'll feel better. Practitioner's proficiency is the key.

REPLY
9 replies
heathert | @heathert | Mar 7, 2017

@boomerexpert that is good to know, might give it a go also. What lung symptoms did it get rid of?

REPLY
boomerexpert | @boomerexpert | Mar 7, 2017

coughing and mucho throat clearing primarily...didn't lessen the infection, of course, but did make it far more comfie to live with!

REPLY
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