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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

sherry72 | @sherry72 | Jun 1, 2017
In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)
@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

Jump to this post

I may ask about the alternating meds in the future.

REPLY
david1952 | @david1952 | Jun 2, 2017
In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)
@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

Jump to this post

Greetings all!
Does anyone know if the Conference in Washington, DC is posting their lectures on the internet?
David

REPLY
anr38 | @anr38 | Jun 2, 2017
In reply to @anr38 "they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding..." + (show)
@anr38

they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding my hearing now, but they have never said anything about checking it. I had to get my eyes checked for a baseline of my vision before i started this antibiotic. how about you? how long have you been on this antibiotic and how do you feel on it? Its causing me problems going to sleep.

Jump to this post

I will ask my doctor when i go back about checking my hearing! I may also see if i could change the time i've been taking my antibiotic from night time to morning or afternoon. The pharmacologist is the one who recommended to take at night so i would sleep through the side effects, but I think the side effect for me is trouble to go to sleep. They want be checking my vision again for another 6 months unless i start having a problem with my vision. I hope and pray it will not change!
Thank you for your info!

REPLY
anr38 | @anr38 | Jun 2, 2017
In reply to @katemn "@lindam272, Linda and @anr38, Angie, doing so so. Just have faith .. things get better! Hugs!..." + (show)
@katemn

@lindam272, Linda and @anr38, Angie, doing so so. Just have faith .. things get better! Hugs! Katherine

From my File Cabinet:
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 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.'
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-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

Jump to this post

Thank you very much Katherine for your information!

REPLY
Kay Strand | @kaystrand | Jun 2, 2017
In reply to @anr38 "they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding..." + (show)
@anr38

they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding my hearing now, but they have never said anything about checking it. I had to get my eyes checked for a baseline of my vision before i started this antibiotic. how about you? how long have you been on this antibiotic and how do you feel on it? Its causing me problems going to sleep.

Jump to this post

anr38. The pharmacologist told me the same but I somehow (almost a year ago) figured out that Rifampin kept me awake at night. I switched it to AM, an hour before breakfast for full absorption, and then slept much better.
Best wishes!!

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jun 2, 2017
In reply to @lindam272 "One more thing - I also plan on asking for a CT scan when I go..." + (show)
@lindam272

One more thing - I also plan on asking for a CT scan when I go back to my ID doc in July. It will have been just over 6 months from my diagnosis and previous scan. Does that seem right? Can you tell the difference this soon on the scans if there is progress? Linda

Jump to this post

@lindam272, you questioned about asking your ID doc for another CAT scan since it's been over 6 months since last scan. I agree with @katemn who mentioned the concern for radiation. Many people, unaware of the radiation risk, push for tests. My pulmonologist alternates each year, one year x-rays and the next CAT scans. He is concerned about the radiation in both x-rays and CAT scans, recognizing they are the best, least invasive diagnostic tool there is. Also, don't be surprised if it appears in your lungs that the NTM has 'shrunk' but then appears somewhere else ... my pulmonologist says that the nature of the disease.

Here's an interesting article ... "Should you worry about the radiation from CT scans?"
https://www.washingtonpost.com/national/health-science/how-much-to-worry-about-the-radiation-from-ct-scans/2016/01/04/8dfb80cc-8a30-11e5-be39-0034bb576eee_story.html?utm_term=.0fbe51228da7

Hope you are feeling well.
Paula

REPLY
boomerexpert | @boomerexpert | Jun 2, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

There is simply too little research being conducted on this growing epidemic...and I believe that dearth of attention will continue until someone in Congress or a celebrity get it and go public. Big sigh...

REPLY
Ruh | @ruhdesb | Jun 2, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

PLEASE PLEASE PLEASE PLEASE.....take me off your discussion email list. I have tried everything to block the emails...divert them etc. and they still fill up my inbox daily. I DO NOT WANT TO READ ABOUT THIS.
Ruth Van Dyne

REPLY
ginak | @ginak | Jun 2, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@ruhbesb. I think you have to unsubscribe. You should contact Mayo Clinic Connect on how to do it.

REPLY
tessie | @tessie | Jun 2, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@ruhdesb; at the bottom any email you receive, click unsubscribe, go to the tab 'account settings', click edit, you will find unsubscribe from all email notifications (I hope this is useful).

REPLY
View MoreView Less
Please sign in or register to post a reply.