(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

@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Colleen, SEE that PROVES I am not reading every single post! Indeed I am so very proud of our Connect Community! Hugs to all! Katherine

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@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

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@boomerexpert, please watch the recording of the NTM conference last week at Georgetown Univ when it becomes available online. There was SO much information that I couldn’t keep up with everything, my notes are quite incomplete and I wouldn’t want to give the wrong information. But a few things mentioned there
1) chlorine and it’s limited ability to kill all the NTM infection and thus leaving the remaining bacteria stronger.
2) the temp of hot water, which I think one doctor who spoke recommended above 120 degrees. My husband spoke with the doctor after the conference because we have a tankless water heater.
3) that the doctors at this conference do not all agree on treatment or prevention of this disease! (a BIG sigh from me)

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@lindam272

This came across my email this morning from Cambridge Mask Co. Right now they are raising money for this new concept, but I believe you can also sign up to receive a mask with the smart valve once they have them in production. Just an FYI for anyone who may be interested. Linda

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Hello Katherine, are you still taking Unison for sleeping? I got me some and I will try to take some tonight. You just took half of it and help you to sleep? Also, I’m losing a lot of weight and I tried eating all the time still losing some. I have noticed my acid reflux got worse since I started the 3 meds. The Prevacid I’m taking seems like are not working anymore. Thank you all so much for your info. Blessing to you all. Cila

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@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

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Katherine – I read your emails over and over as they are filled with such good information.. each time I find something new to focus on, that I missed before. Thank you, thank you! And continue to heal! Pamela

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Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

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@cila, Cila, for my Gerd .. the only one that works is Aciphex .. expensive but it works for me. Hope the below helps! Hugs to all! Katherine

From my File Cabinet:
For my weight loss .. this has helped between meals:
PROTEIN SHAKES A good article on protein shakes is: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype. Personally I did the “Bolthouse Farms Protein Plus Chocolate” .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. (Best price I found 6/19 at Walmart $1.94)

SLEEP DISTURBANCE I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now “stable”. As I have posted I really don’t know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn’t really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use: a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
b. plus 1/2 tablet (tab no the gel) of Unisom .. an over the counter Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can’t say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!
Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:
You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.
For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine
( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Liked by chinasmom, anr38

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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

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@lindam272

Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

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@lindam272, Linda .. what is the name of your app .. and how did you find it .. it would be useful info for my File Cabinet. I think you mentioned before but I didn’t make note of it. Hugs! Katherine

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@lindam272, Linda, ask but I kind of think not .. the doctors are concerned about radiation .. more likely they will do an Xray. I just had a CT scan .. had not had one done since 2014. They definitely can see changes in the Xray though .. ASK TO SEE where the changes are .. and ask for an explanation of where/what! Remember .. “Knowledge is Power”! WE are in the driver’s seat .. understand the changes in your disease process. Linda, thank you for all your hard work while I am healing .. good job .. keep it up .. I have up and down days .. mostly down so keep up the good work .. ALL OF YOU .. named or NOT! Hugs to all! Katherine

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@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.

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@anr38 – You should be getting your hearing checked. Katherine’s guidelines indicated quarterly. I had mine checked shortly after I began the drugs (started drugs in Dec – checked hearing 1/10) but then forgot until just this week. So I went 6 months without testing. My vision was tested every 4-6 weeks but we are now going quarterly since everything has been stable. I have an app on my phone for vision testing that I will do in between.

I’ve been pretty good on these drugs. The Rifampin is the hardest for me but it’s been tolerable. It seems like the worst part for me is headaches. I haven’t had any problems going to sleep but I take all mine before noon or 1:00 for that very reason. Linda

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@lindam272

Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

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Katherine, It doesn’t have a name. I just went to the app store on my phone and typed in vision test and picked a free one. That is what is says under the icon on my phone screen – “vision test.” There is a visual acuity test, a color blindness test, a test for astigmatism and something else. It’s a good way to keep track in between dr visits.

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Katherine, That makes sense. I’ll ask for an xray. I had him show me the changes when I saw him on my first visit and he compared CT scans to one I had done a couple of years before for something else. I agree that we have to arm ourselves with as much knowledge as we can. Katherine, I’m grateful I’ve been able to help a little while you have been down. I am so grateful to everyone on this forum for all the help I have received. I want to give back as much as I can. I’m praying for your healing and your husband’s healing! Linda

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@lindam272 Linda, thanks .. I have added the app info to my File Cabinet! Hugs to all! Katherine

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Touché, Katherine! And that’s how it should be. We’re glad you’re taking care of yourself.

Liked by chinasmom

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@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!

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Ditto!!!!!have a wonderful day connect people!!! You are all loved!!!
Becky

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