(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

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@katemn

@ginak Gina, this is just me .. but I think I would definitely NOT get a water cooler! See the below info if mycobacterium is your concern. When I went to a lot of trouble putting in a 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System in my kitchen sink .. I took all the particulars including pictures to my appt with Dr. Aksamit. He IMMEDIATELY pointed out the problem point .. the faucet .. pointing out no matter how carefully I filtered the water “biofilm” would build up on the interior of the faucet. He also followed up with this message to me: Truthfully I do not regret installing it .. it may NOT be perfect but I still think better than the tap water??

Hello Katherine,
Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.

Gina, I personally have chosen to install the 0.2 micron filters shower heads .. they are costly and must be changed frequently so it is on a shower that only I use. I have on the Forum how to purchase them if anyone is interested. Hope the above information helps someone.

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@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!! Katherine

FILTERATION OF HOME WATER SYSTEMS
Hello Katherine,
Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@maryjo2sell, Mary Jo .. you just LET GO Girl!! I am a big girl and made a choice .. I own my own choices!! However .. it will be interesting .. I ordered an Aerobika from a medical supply company .. it will be interesting to see the difference .. what # I use on the new one. I will let you know! But truthfully I have been satisfied with my previous purchase .. with it I have been able to get up more sputum .. after doing my best by myself .. always get a bit more then using that Aerobika .. so I feel it paid for itself already! Hugs! Katherine

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@david1952, David, I don’t have a clue if this product would be better or worse for you .. I used it daily for 30 months for my inhaled antibiotic Amikacin plus saline. I had a whole system worked out if you are at all interested .. using a tube and mouth piece .. just watched tv as I did it .. boring as all heck but it killed the nasties! Hugs! Katherie
http://justnebulizers.com/pari-vios-nebulizer.html

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@ginak

Hi Katherine, thanks for your input. I don’t understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I’ll just stick to the bottled water. Thanks, Gina

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@tessie, Tessie, FIRST QUESTION: is your doctor an Infectious Disease doctor? SECOND question: ask him .. How many MAC patients have you treated in the past 12 months? Why am I saying this Tessie? Because I am very concerned because you are being told: ‘said I won’t need to collect sputum after I’m through as I’ve already them. Thankfully the last sputum test, mine haven’t grown and I’m glad more specimens are not required.”

Tessie, this is what Dr. Aksamit did for me and I would recommend that you REQUEST IT STRONGLY of your doctor .. YOU are you OWN BEST advocate .. REQUIRE nothing but the best from your doctors and you can quote me!! You go Girl!! Hugs! Katherine

ANTIBIOTIC TREATMENT .. FOLLOW UP AFTER ENDING TREATMENT
It is my understanding that after the antibiotic treatment ends the mycobacterium is still in the lungs but is not “colonizing/growing” .. you become “stable” .. but not really “cured”. That is why you need to have follow up appointments with your Infectious Disease doctor that include at least: a sputum culture/Xray/pulmonary tests. At least for me it began with quarterly check ups .. lengthened to semi annual .. then to annual. With the understanding that YOU know your own body best AND you call for an appointment sooner if you feel something is wrong.

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Update on my Last Doctor Visit
Posted by @decosmo in MAC & Bronchiectasis, 1 day ago
Hi all, I met with Dr. Leventhal MAYO in Jacksonville, on Thursday and after a day of testing to find out the reason for the pain when I breathe on my left lung, the news was positive. He is a great doc. Sraight forward, sense of humor and helps you feel everything will be okay. He spends whatever time you need to spend to get all your questions answered. This is the second time I meet with him. The doc told me it was an infection flare up and because of the location of my bronchiectasis and NTM on my left lung, the flare up was most likely causing the pain. He also gave me some good news: my PFT test results showed a slight improvement from the one in May. MAC is dormant. Will have to wait for the sputum results. He doesn’t expect to find anything but MAC. If I can stay at the level I am at now, he doesn’t for see putting me on the MAC treatment. He told me to keep doing what I am doing regarding preventative measures. If everything can stay the same, I don’t have to see him for another year. Fingers crossed this is the case. He told me walking is a must to continue to increase lung strength and function.
On a not so positive note, my blood work is showing my MPV levels are high and when I went back and checked my previous bloodwork the MPV levels have been increasing for the past six months. The past three months the results have spiked considerably. Do any of you had high MPV blood platelet levels in the past or currently? The doctor didn’t get to see the blood work before we met so we didn’t discuss. I am thankful overall for the results and hopefully the doxi antibiotic will take care of this recent flare up. Rosie

@decosmo Hi Rosie, I am going to answer you here because I think you will get more of a response here. Great news on not needing to go back for a year! BUT I personally have no experience with high MPV levels in the blood work .. anybody else able to jump in on this??

Really like his suggestion of walking as a great “must to continue to increase lung strength and function” .. good advice for us all! Inside or on a treadmill if bad weather. Keep us posted Rosie and I’m hoping someone will jump in with info on the MPV levels. Hugs! Katherine

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Have Bronchiectasis, recently diagnosed with pseumonas.
Posted by @shiell in MAC & Bronchiectasis, 8 hours ago
I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

@shiell I am going to answer you here because I think you may get more responses on this main MAC Forum. I actually remember two different members who have posted with the same issue .. I am going to copy what they said .. I hope it helps some. Please keep coming back with any further questions .. we will try to help in any way we can .. sending you a hug in this tough time! Katherine

PSEUDEMONIS INFECTION- COUGHING Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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Somone has upset you deeply and you shouldnt have to feel this way. You know, and everyone else does too, that you are doing a fantastic service. So don’t let someone else take your mind away from this. Don’t let them steal your joy!
You are loved and appreciated.
Becky

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Thanks Katherine!
David

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Just to join the discussion i think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM.(non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. I hope everyone is having a wonderful, fantastic weekend. I live in Florida and our weather today is awesome! Good wishes to all, Mary Jo

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@ginak

Hi Katherine, thanks for your input. I don’t understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I’ll just stick to the bottled water. Thanks, Gina

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As you said, I will inquire further thanks Katherine.Tessie

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@maryjo2sell

Just to join the discussion i think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM.(non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. I hope everyone is having a wonderful, fantastic weekend. I live in Florida and our weather today is awesome! Good wishes to all, Mary Jo

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@maryjo2sell, Mary Jo I APPLAUD you!! Amen to that!! You have brought true sanity to this conversation! Sometimes I absolutely think it is true that we lose sight of the big picture .. that we DO live in this big wonderful world of ours! Just going to a movie and having a drink with THEIR ice cubes .. going out for dinner .. drinking THEIR water and THEIR ice cubes .. you made me think of that! THANK YOU for jumping in with your sanity! In fact I am absolutely going to add your thoughts when I note “filtration” for my File Cabinet.. a note of sanity! Hugs to you! Katherine

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@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up – lovely subject! – I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer … which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful “flutter” I had to turn the “+” sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max “+” setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@chinasmom, Becky, you are dear and it does my heart good to read this .. but I was wrong to allow my fatigue to misdirect a private email to what I consider my sacred Mayo Connect space .. and I do apologize again for that. But thank you for your very kind words .. this Mayo Connect is a sacred space for me .. and I truly do try to do my very best for all of you .. and trust me I get back SO much more than I ever give to you. With big hugs and tears in my eyes .. to everyone! Katherine

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