(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

@windwalker

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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Hi. I know that the Mayo is experimenting even as we speak on stripping
down donor lungs to their main structure; and then taking growth/lung cells?
from your own body and growing them over the structure. That way you are less
likely to reject the lung. That is 5-10 yrs or more out though.
 

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@windwalker

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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WOW! Terri!

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@windwalker

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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I know! It is amazing! Right now they are using a lab in Maryland that
takes in ‘dirty’ donor lungs that would otherwise be unsuitable for
transplanting, and cleans them. They have equipment that can keep
the donor lungs alive hours longer now while they do the cleaning process.
This way there are more lungs to go around. The Mayo in Jacksonville has
been breaking ground to build it’s own organ rejuvenation center. It all
blows me away! Gotta love science! I have to say; my disease intrigues me more
than it scares me.
 

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No worries, there seems to be alot of people who say they have had stem cell treatment (cells from blood or fat from bone marrow),, some say it worked and some say it diddnt. Lets hope they get this working well soon along with some great new antibiotics.

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@heathert

No worries, there seems to be alot of people who say they have had stem cell treatment (cells from blood or fat from bone marrow),, some say it worked and some say it diddnt. Lets hope they get this working well soon along with some great new antibiotics.

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Amen to that!
 

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@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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Your husband is lucky indeed to have you! What is CLL?
 

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@lindam272

Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went From Diagnosis to Full Recovery in Just One Year by Daniel Pecaut in the Bronchiectasis News Today and ordered it. For $4, it’s worth it if I just read one thing that makes my life a little easier. Thought I would share with you all in case you have any interest as well. https://www.amazon.com/Beating-Bronchiectasis-Went-Diagnosis-Recovery/dp/0998406201/ref=sr_1_1?s=books&ie=UTF8&qid=1488470221&sr=1-1&keywords=pecaut
Blessings on your day! Linda

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Hi Linda, please let us know if this book was helpful.
 

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@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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Thanks Kate, Hearing your routine was really helpful!!!!!
David

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@katemn

Dear All.. wanted to share a tip with you in case you might need it. I was traveling to an area that had TERRIBLE POLLUTION ( equivalent to smoking a pack of cigarettes per day!) I was very aware of various masks including the 3M N95 but did my “due diligence” and found this (I got a kinda cute one!):

http://www.cambridgemask.com/buy-a-mask/international/ Where I purchase mine .. bought two of them .. shipped from the UK .. was SO happy with them. Very easy to breathe through .. in fact on the plane home was across from a woman with a TERRIBLE cough .. so I wore mine the whole way home and did NOT catch her cold! So I would highly recommend this mask to anyone of us with our poor immune systems. I have since CAREFULLY washed one of mine (did not even use the 2nd one) .. let it air dry and it is ready for use again.

I have SINCE found it at good old Amazon .. just can’t believe it .. you can find ANYTHING at Amazon .. did not even look on Amazon at the time I purchased!! Hope this helps someone! Hugs! Katherine
https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab

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Katherine – as to this mask, what size did you order? Any suggestions as to how to know what is the best size? I have a narrow face. Pamela

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@katemn

Dear All.. wanted to share a tip with you in case you might need it. I was traveling to an area that had TERRIBLE POLLUTION ( equivalent to smoking a pack of cigarettes per day!) I was very aware of various masks including the 3M N95 but did my “due diligence” and found this (I got a kinda cute one!):

http://www.cambridgemask.com/buy-a-mask/international/ Where I purchase mine .. bought two of them .. shipped from the UK .. was SO happy with them. Very easy to breathe through .. in fact on the plane home was across from a woman with a TERRIBLE cough .. so I wore mine the whole way home and did NOT catch her cold! So I would highly recommend this mask to anyone of us with our poor immune systems. I have since CAREFULLY washed one of mine (did not even use the 2nd one) .. let it air dry and it is ready for use again.

I have SINCE found it at good old Amazon .. just can’t believe it .. you can find ANYTHING at Amazon .. did not even look on Amazon at the time I purchased!! Hope this helps someone! Hugs! Katherine
https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab

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@pamelasc1, Pamela, I had read on the website: SIZING ” We have found that the best way to choose the mask is by weight. MEDIUM: 33 – 64kg= 73 to 141#” that is a pretty good leeway .. so I purchased the Medium .. and I am pretty small .. 5’2 and 116#. Hope that helps! Hugs! Katherine

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@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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@windwalker Terri, CLL is a blood cancer .. a leukemia. He has been on a new chemo, Imbruvica for the past two years and has been doing quite well .. we have been told it NOT a cure but is “life sustaining” .. we are delighted! Hugs! Katherine

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@windwalker

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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that is fantastic!

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@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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Thank you. I had never heard of that. I am glad he is getting good care.
does he go to the Mayo also?
 

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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

REPLY
@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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@windwalker, Terri, actually no .. we found a fantastic Oncologist when we had a winter home for 7 years that we return annually for a check up .. we have such confidence in him! But we know we could always go to Mayo also if he stopped doing so well! Hugs! Katherine

REPLY
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