(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

@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Done…registered.

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@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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Boomer, this is GREAT question for those going to their doctors within the next few months .. GRILL the doctors on just WHAT IS the newest research on hot water heater temperature?? IS IT 120 .. IS IT 125 .. IS IT 130?? It is ALL too confusing for those of us sitting out here with different research studies .. trying to make sense of it! Then PLEASE come back to Connect with the ANSWERS from specific sources so we can get a consensus for our Connect! We all try to help each other sort out what is best for each other .. this is an example where we really need to get to the bottom of it! PLEASE HELP! Hugs to all! Katherine

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@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement ” bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples.” .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted “gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that ” bronchoscopy to obtain samples and a possible biopsy even better” makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

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Perfect instructions Ling. Additionally, here are the instructions on how to unsubscribe from a particular discussion thread.

How to unsubscribe from a thread
1. Open an email that you have received about the discussion thread.
2. Scroll to the bottom of the email.
3. Click “Unsubscribe”
4. Select “Unfollow. Do not notify of this anymore” from the drop-down selection.
5. Click Update.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@jkiemen, Jo Ann personally I feel my ONLY responsibility is to look just as good as I possibly can at ANY GIVEN AGE .. dress well .. do my hair, nails, pedicure .. AND PHOOEY on anyone else! Nope my skin is not as beautiful as it was at age 50 .. Nope I am not MANY things I was at age 50 or 30 .. BUT I am ALSO MANY MORE things that I was NOT at those ages! I know that I have gained in wisdom .. patience .. caring .. “attitude” (I feel VERY free to state my opinion .. AND do NOT suffer fools gladly as the saying goes!) so if someone called me an “old woman” to my face .. I probably would reply “UP YOURS!”. BUT if it was ONLY a mild reference to the fact MAC tend to cluster in “older women” .. I would NOT take offence .. it IS the truth .. Truth IS Truth! It would all depend on how it was referenced! Just MY take on the situation! Hugs! Katherine

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I’ve got Dr. O’Donnel, and he is pretty great

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I do not have the Alpha1 gene. The possibility of us being contagious really brings a new light to this, TB is highly infectious as are all other bugs, so why wouldnt this be. Maby if we get rid of our MAC, and then it returns it could be that we catch it from our nearest and dearest again who havnt yet been treated. Very interesting

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@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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@katemn,
the answer to the hot water heater is on the confernce (D.C.) info. That
conference is not a video tape by the way. It is the slides that were presented.
I know that the norm was 120, but the MAC is mutating to withstand that
temperature. They are now recommending a higher temp. preferably 130-140. You
would have to be extremely careful not to burn yourself. I would think at those
temps, you could run your equipment through the dishwasher and it would
sterilize it.
 

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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@boomerexpert,
just re-read my notes from the conference. You are right, they recommend
110-120. That the MAC has been found to be heat resistant at 90degrees.
 
 

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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@katemn,
Boomer is right. Recommended temp for hot water heater is between 110 and 120.
They have found heat resistant strains at 90 Degrees. (I just re-read my notes
from the conference.)
 

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@boomerexpert,
I have been signed up for awhile now. It tends to have a lot of gloom and doom
articles. I don't really read it anymore for that purpose. I will check out the
transplant article since I may be looking a one in the future. Thank you.
 

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Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

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@milagro103, do you have a first name .. more personal. I googled “mycobacterium ventiflavum” .. what I came up with was “Mycobacterium lentiflavum” are you sure you have the correct spelling? If I was sitting in your shoes AND my spelling is correct .. I would do some reading on the below google search .. EDUCATE YOURSELF .. so you can become your husband’s advocate! My husband has many health issues .. so I know all about the need to be a spousal health advocate! Get to researching .. then ABSOLUTELY if I was sitting in your shoes I would be looking for a second opinion. AFTER you have researched the below .. AND done some reading of the back pages of our back pages of this Main Forum .. why? BECAUSE ALL the mycobacterium strains share very similar issues .. journeys .. and you will learn a LOT! After you have done this .. please feel free to come back with any questions .. we have ALL been on this same journey .. we will walk this journey with you! Sending you a hug .. I know it is a tough time! Katherine

https://www.google.com/search?q=mycobacterium+ventiflavum&oq=mycobacterium+ventiflavum&aqs=chrome..69i57j0l5.886j0j4&sourceid=chrome&ie=UTF-8

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Milagro103….for sure get a second opinion….mayos or NJH….tdrell

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@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with “Alpha1 antitripsyn deficiency” including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in “Alpha antitripsyn” you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say “I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.” Why don’t you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
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Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@windwalker Aw, you are sweet. Thanks for saying that.

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