(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 4, 2017

In reply to @katemn "Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I..." + (show)

@jamesthee, Hi Anne, It is Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com. I got mine at: https://smile.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1488654899&sr=8-1&keywords=Expand-A-Lung

Everyone who has used it has really liked it! Hugs! Katherine

JamesThee | @jamesthee | Mar 4, 2017

In reply to @katemn "Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I..." + (show)

Thank you, Katherine. I saw it and will discuss with pulmonologist.

caroldelanelittleld | @caroldelanelittleld | Mar 4, 2017

I am new to this group....also new to the disease

Katherine, Alumni Mentor | @katemn | Mar 4, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

@caroldelanelittleld,.. is your name Carol? or? 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! 30 pages? Phooey .. you will read a 300 page book for pleasure .. you won't read 30 pages 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! Katherine

Katherine, Alumni Mentor | @katemn | Mar 4, 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
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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=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

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@hopeful33250, thank you Theresa .. I just updated it for our particular MAC disease .. SHOULD have done it PRIOR to posting .. not up to speed right now! Katherine

Katherine, Alumni Mentor | @katemn | Mar 4, 2017

In reply to @jentaylor "Hi Katherine, great form! Thanks!!! ~Jen :)" + (show)

@jentaylor, Jen, see my correction/update below .. sorry! Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Mar 4, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

Dear All, Please jump in show @caroldelanelittleld what a wonderfully supportive community she has found .. you KNOW what a scary time it when you are first diagnosed .. it is an icky time! Love you all! Katherine

heathert | @heathert | Mar 4, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

Hi @caroldelanelittleld and welcome to our group, please do not hesitate to ask anything, we have all been in your shoes. I hope you will find this group of lovely people a great help, we are all here for each other. 🙂

Katherine, Alumni Mentor | @katemn | Mar 5, 2017

Posted by @decosmo in MAC & Bronchiectasis, 4 hours ago
Hello All, I hope you had a good Saturday. I had to start a round of Doxcy today for 10 days for the most recent lung flareup. Some of you may know by my previous posts, that I also struggle with SIBO (small intestine bacterial overgrowth). Needless to say, I am a bit worried that this round of antibiotics will contribute to my SIBO and heaven forbid the dreaded C DIF. I have started to take 15 Billion probiotic daily (ultimate Flora) and wondering what strength those of you take when you are on a course of antibiotics.
Kate, I believe you shared info on Florstar. Does this probiotic contain dairy? I am lactose intolerant and I could not tell by the advertisement.
I look forward to learning about the strength and amounts you take.
Rosie

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@decosmo Rosie, I am moving this to the main Forum because I am afraid you won't get enough responses otherwise. I remember another member said they were lactose intolerant and mentioned a brand. I just looked at what I take: Renew Life Ultimate Flora Extra Care Probiotic 50 Billion .. says on the outside: Dairy Free. Hope others jump in with their thoughts since I am not lactose intolerant. Hugs! Katherine

Rosemary, Volunteer Mentor | @rosemarya | Mar 5, 2017

In reply to @heathert "@windwalker I found this article, it states that Thailand is doing lung stem cell treatment already,..." + (show)

@windwalker, I want to introduce myself to you. My name is Rosemary, and I am one of your neighbors from the transplant discussion. I have been a patient at Mayo for 8 years. I am a liver/kidney transplant recipient. And I assure you that they are the best!
I will admit that I do not know much at all about the lung transplant process. But all of transplant patients and recipients do share some commonalities. I would invite you to take a look at some of the transplant discussions. Right now there are not any active discussions related to lung transplant, but we are ready to support you and answer and wait with you.
Are you listed, yet? Or in the evaluation phase? And Which Mayo location?
You are not alone.
Rosemary