(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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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Meant as a general response to bad doctoring

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@katemn

@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

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When my Mom was in Banner Del Webb hospital in Sun City West, AZ almost every person that attended to her, pulled her hair back, I reported Many times, Admin would not bother w it. Then I thought i would report to her Dr. and he touched his forehead 4 a long time – I thought I give up.Also, have u seen medicals drop gloves – pick them up off the floor and just keep going? I have.
Mari

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@katemn

@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

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@mari, Mari, I can only repeat as Boomer says below .. we CANNOT be shy about advocating for ourselves OR our family members. My husband has been in the hospital many times. Frankly I become a mother bear. If something is not done right .. I go RIGHT TO the Head Nurse and in a FAIRYLY nice way DEMAND things be done properly for my husband. YES, you get more with “Honey than Vinegar” .. BUT ALSO “The squeaky wheel gets the Oil!” .. and in today’s hospital with the overworked staff .. I have left it up to my husband to be his usual charming and adorable self to get great service .. “good cop/bad cop” routine. It usually works .. he charms the nurses .. I get things done with the Head Nurse! I will NOT put up with my husband NOT getting good care in the hospital .. it is especially important that family members have an ADVOCATE in the hospital in my opinion! Mari, this is just my opinion. Katherine

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Kay Strand @kaystrand Sent on Thu, Mar 16, 2017 at 1:00 pm
Seems like so many of us would have thyroid issues at our age. I’m seeing my doc next week and will get an Endocrinologist recommended. Thanks again Kate!
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Kay Strand @kaystrand hope you do not mind but I am going to answer this on the Main Forum pages because I think my answer should be there.

Kay, PLEASE .. do NOT wait for a recommendation next week!! Do your OWN due diligence and follow the “How to on our past pages to find a doctor”! Waiting around for a “recommendation” is EXACTLY how my husband ended up with a COLON CANCER specialist for his BLOOD CANCER instead of a CLL SPECIALIST!! Too often doctors recommend their “buddies” .. or someone they went to school with .. or someone in their country club! This is just my opinion .. but after that experience I ALWAYS find my own doctors now. Here from my File Cabinet .. hope it helps .. do what you feel is right .. just my opinion! Hugs! Katherine

DOCTOR-FINDING GOOD Endocrinologis
If was sitting in your shoes here is what I would do.
1. Google: Endocrinologist in your area
2. Google each doctor .. see where they went to school .. my opinion .. the better school they went to .. the smarter they probably are
3. look for doctors photos (can be years old) that appear young enough to have newer knowledge but old enough to have good experience
4. look at their bios .. look for one that show a specialty of Hypothyroidism .. did research in that area in college .. any mention of
5. when you find a doctor specializes in Hypothyroidism .. GET an appointment .. THAT one will know how to treat you!

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@katemn

@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

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And a great opinion to have!

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Hello All, brought to my attention something that I thought was REALLY interesting since our group has several times mentioned hoping that the day comes when various forms of research results in better treatment for our lung diseases .. so I thought I’d mention the below. It just confirms my belief the importance of having a GOOD working relationionship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

Read: “The Washington Post reports that an article in the New England Journal of Medicine suggests patients are being fooled by clinical trials that wind up on the NIH’s internet data base without assurance that the trials are safe and promising.”
https://www.washingtonpost.com/news/to-your-health/wp/2017/03/15/three-women-blinded-by-unapproved-stem-cell-treatment-at-south-florida-clinic/?utm_term=.478d55d46029
and “”Unapproved clinical trials are able to list (their) study on a comprehensive database of clinical trials called ClinicalTrials.gov (https://clinicaltrials.gov/), which is run by the National Institutes of Health (NIH). At least one of the patients — and maybe more — believed that she was taking part in a government-sanctioned study,” he said.
“Paul Knoepfler, a stem-cell scientist, said that allowing the clinics to list their trials on ClinicalTrials.gov is ‘almost like a form of advertising for products that don’t have FDA approval. That’s really problematic.’ “

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@katemn

Hello All, brought to my attention something that I thought was REALLY interesting since our group has several times mentioned hoping that the day comes when various forms of research results in better treatment for our lung diseases .. so I thought I’d mention the below. It just confirms my belief the importance of having a GOOD working relationionship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

Read: “The Washington Post reports that an article in the New England Journal of Medicine suggests patients are being fooled by clinical trials that wind up on the NIH’s internet data base without assurance that the trials are safe and promising.”
https://www.washingtonpost.com/news/to-your-health/wp/2017/03/15/three-women-blinded-by-unapproved-stem-cell-treatment-at-south-florida-clinic/?utm_term=.478d55d46029
and “”Unapproved clinical trials are able to list (their) study on a comprehensive database of clinical trials called ClinicalTrials.gov (https://clinicaltrials.gov/), which is run by the National Institutes of Health (NIH). At least one of the patients — and maybe more — believed that she was taking part in a government-sanctioned study,” he said.
“Paul Knoepfler, a stem-cell scientist, said that allowing the clinics to list their trials on ClinicalTrials.gov is ‘almost like a form of advertising for products that don’t have FDA approval. That’s really problematic.’ “

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UNABLE to open link. How do we find out which trials r legit?

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@mari .. Mari, I was able to open the links by just clicking on the “blue” links on my post .. try again? Also on your email .. did you just hit at the bottom “View and Reply” to get to my post?

In terms of the trials .. I personally have ZERO experience with trials .. perhaps other members can jump in .. BUT I would repeat:
It just confirms my belief the importance of having a GOOD working relationship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

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Dear All, I found the below article interesting .. it may be elementary to some .. but enlightening to some so am going to mention it! Hugs to all! Katherine

A BEGINNERS GUIDE TO THE LUNGS AND HOW THEY WORK
https://pulmonaryfibrosisnews.com/2017/03/08/a-beginners-guide-to-the-lungs-how-they-work/

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@katemn

Dear All, I found the below article interesting .. it may be elementary to some .. but enlightening to some so am going to mention it! Hugs to all! Katherine

A BEGINNERS GUIDE TO THE LUNGS AND HOW THEY WORK
https://pulmonaryfibrosisnews.com/2017/03/08/a-beginners-guide-to-the-lungs-how-they-work/

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Katherine   Katherine, Volunteer Mentor @katemn I will have breast reconstruction surgery 3/20/17. what group should I be in ?
Mari

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@mari, Mari, the Main Connect Forum for Breast Cancer is: https://connect.mayoclinic.org/group/breast-cancer/

From Colleen: In the meantime, here is some information about the different types of reconstruction options http://www.mayoclinic.org/tests-procedures/breast-reconstruction/basics/definition/prc-20020499

I am adding @teege1, @user_3c9038a,@luladavis and @smness .. hoping they will jump in and give you some help/hints/support!

If I was you .. I would read through the various discussion threads to see if you find the help/hints/support you are looking for. IF you DO NO .. what I would do .. at the TOP of https://connect.mayoclinic.org/group/breast-cancer/ .. says “START A DISCUSSION”.

Why don’t you start a discussion with something like: I am facing breast reconstruction soon and have LOTS of questions! Anyone out there who might be able to help me? Mari

Hope this helps you Mari .. I think you will find help. If NOT you get right back here and I’ll find it for you! Hugs to you and LOTS of positive energy! Katherine

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@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Hello All, I made it to Mayo (Minnesota)!!! My three flights to get here was an overwhelming expierence because I had to travel with so many carry on’s…medications (46), bipap, portable O2 concentrator & my personal purse. I had wheelchair assistance between flights which was a God sent! I had wonderful people helping me to get through my day long travels.

I’m so excited & relieved to actually be here! I came in Sat. evening. My first appointment with Dr. Aksamit is tomorrow morning at 8:30am. I just got a review of the map & figured out where I’m going in the morning. I’m still very anxious about my time here…I feel I will be under scrutiny (& judgment, looked at like I’m a crazy mess!) but my husband pointed out, that I am under scrutiny, as I am here to be thoughouly examined & for doctors to make an accurate assessment which hopefully leads to a diagnosis which hopefully leads to suggested treatment. I still feel like I have butterflies in my stomach!

Right now I continue to work on my medical records, highlighting important pieces of information. I am almost embarrassed that I have so many medical records! And I actually only have maybe 10% of my records from over a 10 year period! I am also thinking ahead & worrying what I will do if they too can not find a diagnoses & what will I do from there! My husband points out that when I think that way I am not helping anything & that I am living in the future & not in the present, & that I can not let myself think ahead like that. He’s right! So I’m trying hard to stay positive, keep faith & move forward, doing the best that I can!

I raised $3,611 (AMAZING) & need another $1,550! That was my first time using gofundme. I never would have thought of doing that but my friend encouraged me & wow, what a success it has been! I feel so supported & loved by my friends & family!!! Their are even donors that I don’t know! What a reassurment that there are so many good people in our world!

So I’m assuming I will receive an itinerary tomorrow? Let me know your feedback or suggestions for my first day tomorrow! Thanks for all of your support! ~Jen 🙂

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@jentaylor, I just now happened to see your post that you have arrived at Mayo. I send you my best wishes for a positive outcome. In the meantime, take comfort to know that you are in good hands! You are about to be wrapped in a complete and coordinated level of care that you will forever remember. Do not feel that you stand out because this is where people come from around the world for treatment of all sorts of conditions. Think in terms of one step at a time. There are wheelchairs and assistance everywhere if you and husband need it. Keep in mind that you are not alone. I, for one, will be thinking of you tomorrow.
Rosemary

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jentaylor Glad to hear that your trip went so well. Best wishes! Teresa

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