(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.

colapyrus | @colapyrus | Mar 14, 2017

In reply to @katemn "@colapyrus .. Jan, personally I have never been told by a doctor which it is ....." + (show)

Thanks for the reply. I haven't had the weight loss problem yet but I'll be prepared if/when I do. I like the protein shake with yogurt and fruit idea. It seems to cover multiple issues at once. Jan

jillnc | @jillnc | Mar 15, 2017

In reply to @katemn "@jillnc .. Jill, excuse my ignorance .. but I did not know what rsv was so..." + (show)

Yes. Sorry I forget sometimes people don't know the letters. It is more common in kids under 2 than in adults. Most adults I've told said they didn't even know adults could get it. I didn't feel I had issues breathing, my throat just hurt so bad I couldn't stand it anymore and because of all my other issues I figured an er/hospital was better equipped than an urgent care. Of course they don't treat rsv in adults so they sent me home as I was feeling better than when I had come in too.

beatitnow | @beatitnow | Mar 15, 2017

In reply to @katemn "@colapyrus .. Jan, personally I have never been told by a doctor which it is ....." + (show)

@colapyrus....I have not looked back to double check, but are you new to taking the 3 meds for MAC? I am too. I started drug number 1 this week. I hope I don't lose weight...I can't afford it. Thanks for asking more questions about that. Feel free to tag me with any questions or comments. 🙂 Thanks! Amy

Katherine, Alumni Mentor | @katemn | Mar 15, 2017

@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Mar 15, 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/
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

Jump to this post

@tdrell, Hi Terri! I finally have the definitive answer after going for my sputum culture at Mayo Clinic March 7! I asked the Respiratory Therapist .. I told her I had always called it my "Monthly salt induced Sputum Cultures" she said that was accurate from a layman's standpoint but the medical term would be "Hypertonic Saline Induced Sputum Culture". So Terri I am inaccurate ..but for the needs of our newcomers think I am going to stick with my terminology because I think it is a bit easier to understand to a newcomer! I am wrong but phooey who needs to be right if it is easier to understand but won't be death to us! By the way .. how are you doing? How ok! Hugs to you! Katherine

Terri Martin, Volunteer Mentor | @windwalker | Mar 15, 2017

In reply to @katemn "Dear All, This is the question form I use when I see my MAC/Bronchiectasis doctor. This..." + (show)

@katemn

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

3. Based on the current progress how long would you project that I would me to be on the medications?

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?

Jump to this post

Hi Katherine. Been thinking of you a lot. Hoping you are feeling better and better with each passing day. Hugs - Terri M. Been thinking of you too Terri.

Katherine, Alumni Mentor | @katemn | Mar 15, 2017

In reply to @katemn "Dear All, This is the question form I use when I see my MAC/Bronchiectasis doctor. This..." + (show)

@katemn

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

3. Based on the current progress how long would you project that I would me to be on the medications?

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?

Jump to this post

@windwalker, Hello Terri, I really am feeling better. In fact hoping to go to a grandson's championship basketball game on Friday! Just about my first outing! I have mentioned I am a believer in joining East/West health practices .. and that all over Europe (even the Queen of England has a Homeopathic Practitioner) people there have always used Homeopathic Practitioners. That I have blessed to find a Homeopathic Practitioner that has also been a practicing Pharmacist for 17 years. Well I finally felt well enough and brain fog lifting enough to think to email her a few days ago. She told me a "remedy" to take that I already had on hand (Homeopathic equivalent to a prescription but VERY gentle and will NOT fight with ANY medical prescription) .. be darn if I don't feel the best I've felt since March 7! YEAH!! So thank you for thinking of me .. trust me .. I feel all the positive energy that ALL my wonderful Forum member are sending me to get well .. and I KNOW I will get there with all that positivity! Hugs to all! Katherine

colapyrus | @colapyrus | Mar 15, 2017

In reply to @katemn "@colapyrus .. Jan, personally I have never been told by a doctor which it is ....." + (show)

@beatitnow ....I have not started any meds yet. I'm scheduled to be evaluated at Natl Jewish in May so I'll see what they suggest. Hope your experience with the meds goes smoothly! Jan

Katherine, Alumni Mentor | @katemn | Mar 15, 2017

In reply to @katemn "@colapyrus .. Jan, personally I have never been told by a doctor which it is ....." + (show)

@colapyrus, Jan, I am so excited for you that you got into NJ .. great place .. be sure to let us know all you learn after you are seen in May! I'm sure you have lots to add to our pages in the Forum for newcomers .. how all goes well for you .. be sure to keep us posted! Good luck and Hugs! Katherine

tdrell | @tdrell | Mar 15, 2017

In reply to @katemn "Dear All, This is the question form I use when I see my MAC/Bronchiectasis doctor. This..." + (show)

@katemn

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

3. Based on the current progress how long would you project that I would me to be on the medications?

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?

Jump to this post

Katherine you are amazing ....how thorough and conscientious you are....checking out the type of inhaled solution used to induce mucus for a NTM culture!!! My only fear would be if any reader would attempt to make their own solution and make it too salty....possibly cause damage.

I am hanging in. SHortly after my return from National Jewish Health in January.....(Where I was happy to find out that at this point I did not have NTM infection in my lungs therefore did not need to take the antibiotics), I had an appt with my local pulmonologist who found the MAC during my July 2016 Bronchoscopy.
He had been sent all the reports and summaries from my time at NJH.

He was irate that I would not be taking the antibiotics.......he felt I should be on them.....in addition he became more irate that I had a sleep study ( the same bronchoscopy showed I needed a sleep study to investigate visible airway collapse) at NJH ????Even though I was waiting to be scheduled for one from the clinic he belongs to (6 months)

He grudgingly agreed to order the sleep apnea equipment at another appt......which would Have been in 2 months....his first opening......and I feared would have been more than 90 days from the sleep study at NJH....hence i might have had to have another sleep study according to Medicare rules.

So I put my thinking cap on....called the other clinic in town....asked to make an appt with this excellent pulmonologist to get my sleep equipment......( tried to get in with him for cough evaluation about 2 years ago....but was told he was not accepting new clients at that time...so I went to the one described above) I came up with an honest reply to receptionist when she asked "are you new?" To say no....i was not new.
So was seen by the new Dr on March 2...and he ordered my sleep apnea equipment and he reviewed my NTM saga from the 71 pages NJH had faxed him and said to me " I agree with them.....your GERD is your problem....you do not need to take the antibiotics."
Took a 2 Week vacation mid Feb.....to Arizona....dryness is great....coughed much less.... until coming home....while on connecting plane.....cough and mucus started.
So for last 2 weeks since the flu is rampant here.....,hibernated....irrigated nose with saline .....slept extra hours....and of course coughing up gobs of mucus.
So that is how I am doing and thank you for asking ! I hope you will continue to recover. TerriD

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