(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: “If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs.”

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

Jump to this post

@megan123, .. Jennifer, the information I have is:

Canadian Citizen
As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq

Anyone else have any other info .. please jump in! Hugs to all! Katherine

REPLY
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: “If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs.”

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

Jump to this post

Hi @megan123
I believe you are referring to the Canadian website that @hishamhussain shared above. It is from CATIE.ca
http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac

REPLY
@katemn

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: “If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs.”

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

Jump to this post

Thank you for jumping in Colleen .. I misunderstood her concern! Katherine

REPLY
@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

Jump to this post

Steve, ask your dr about tobramycin. It is expensive, but there are
charities that help pay for it. The specialized Walgreen’s pharmacy has a list
of those charities. Treatment with ‘Toby’ is ONE drug, nebulized straight into
the lungs, no harsh side-effects. Best of luck on whatever you choose. Terri
M.
 

REPLY
@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.

Jump to this post

This is only MY take on MAC. It is everywhere, I feel like we get infected
because our immune systems are not working properly. Because MAC is
unavoidable, I don’t know that water filters are the answer.Do all you can to
boost your immune system, Accept the fact that antibiotics are going to be in
your life. Of course do like Katherine always says; eat healthy foods and
exercise, and follow doctor’s orders.
 

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

I had a bronch done in 2005 without anesthesia or calming drugs. It was a
nightmarish thing to go through. I was unaware at that time that you needed to
be given something before this procedure. The dr had two male assistants
hold me down. I swore I’d rather die than go through that again. Have learned
since, that it was performed improperly.
 

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

@windwalker,Terri, I am SOOO sorry this happened to you .. so very wrong. Not ONE of our Mayo Connect Forum members will EVER have this happen to them .. BECAUSE thankfully we have all educated each other to what is right .. AND what is wrong. Thank heavens for this our community! Again, Terri, I am sorry .. try to banish this ugly memory from your life and replace it with “happy”! Hugs to you! Katherine

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

God bless America! I can’t even imagine such a thing. That must have been horrid! So sorry!

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

@windwalker, Terri, I was just thinking .. IF their SORRY excuse was your lungs couldn’t handle going under a full anesthesia .. ok .. then if you have read my previous post with my experiences with it .. a GOOD anesthesiologist can take you “down” ENOUGH with what is called “twilight anesthesia” where a GOOD doctor can take you down just as far as you need to go. ASK FOR IT!! I do EVERY SINGLE time .. I was told I could have it except as I recall if an internal organ was involved. Just that doctors PREFER that you be KNOCKED OUT!! Hugs! Katherine

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

Good grief! Sounds like malpractice to me, Terri. Here is a question for you all – I was just getting ready to make some Crystal Light and went to reach for the faucet to fill the container with tap water and stopped myself midstream. Clearly, tap water is no longer something that I want in my system. Can’t use the water from the refrigerator dispenser either. So can I assume that powdered drinks are no longer anything that I can have? Was just diagnosed in December. Linda

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

I talked to the Mayo about it, they said I should have been put in
twighlight. I had a gut feeling that dr was out to be cruel on purpose. I will
never let that happen again.
 

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

Thank you Katherine. No one has ever appreciated what I had been put
through when that happened. During that same procedure, that dr shoved the
tube down into my lungs hard and it jammed into the very bottom of my lung. (all
the while being held down by two males) I thought I’d go through
the ceiling.  That, after feeling like you are being suffocated from
the tube in your throat and cannot get air. My drs at the Mayo said that would
NEVER happen their facility. Thank God, because if I were to ever get that lung
transplant, you have to have a bronch every three weeks at first.
 

REPLY
Please sign in or register to post a reply.
  Request Appointment