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.

tdrell | @tdrell | Jul 22, 2017
In reply to @contentandwell "@katemn Hi Kate. I do not regularly follow this thread because there are so many posts..." + (show)
@contentandwell

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

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windwalker and Irene5....re ADD....a few weeks ago l took a refresher CPR course ...I do it every few years as insurance that l would never need to use the skills. I was soooo happy to have the young man l had a few years ago as the teacher again. He is a Para medic with local Ambulance company and is the best teacher of the course l have had in the 40 years I have taken the course. And he is very open/candid about saying he has ADD. I stayed after class to tell him that the way he drew/explained the heart and the electrical system was the best I have ever seen. A remarkable young man who l suspect has saved many lives....he did at the Erin Hills golf PGA tournament a few days prior to class,.Tdrell

REPLY
tdrell | @tdrell | Jul 22, 2017
In reply to @contentandwell "@beatitnow These questions posted by Amy are also of interest to me. For some reason I..." + (show)
@contentandwell

@beatitnow These questions posted by Amy are also of interest to me. For some reason I cannot find my way to Amy's post though. I am interested too if anyone knows anything about this. I use a chlorinated pool about 5 times a week for water exercise and I believe when we go away in October that the place where we are staying has a salt water pool.
___________________________________________________________________________________________

I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!
___________________________________________________________________________________________

Thanks, JK

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contentandwell....to echo all the previous EXCELLENT responses to the issue of dangers to swimming/being in pools. At sept 2016 National Jewish Health NTM conference which I attended, I asked the Microbiologist Dr Joseph Falkingham the following question.
"when the Health Department is checking the pools we have at the YMCA are they able to check for NTM"S?"
His reply was that NO they are not checking for NTM....mostly looking for E COli bacterium (which is from feces)
tdrell

REPLY
tdrell | @tdrell | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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 aka Terri...your word Ubiquitus (I bet you took Latin in High School) is so true. Awhile ago some people who had had open heart surgery a few months before were getting severe wound infections surrounding their chest surgical sites and dying Investigation revealed that they had a virulent NTM variety...was it Chelona...I forget....and it was traced to a machine used during the open heart surgery. Parts of the machine when disinfected between usage/patients were not sterilized so that the NTM grew....and they think a fan in the machine blew the NTM into the open chest hence the infections after the bacterium multiplied after several months.
They narrowed it down to one brand of machine made in another country..
Also...my gynecologist told me there is a variety of NTM in females in their vaginal area that causes infertility. It is curable with l think he said Cipro and then the woman is able to get pregnant
NTM trivia
tdrell aka terri.

REPLY
tdrell | @tdrell | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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ginak...I got a steel head for shower head....l leave door open and fan on when l shower and try not to inhale much. I am unable to use bathtub since l have had both hips replaced and cannot do the in and out of tub. I try not to drink much from faucet when home...l buy gallons of Spring water and drink that....and make ice cubes manually NOT from refrig icemaker....using spring water.....you can buy ice cube forms anywhere....tdrell

REPLY
auntnanny | @auntnanny | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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'm just writing to mention to the lady wishing she could use her bathtub that there are some inexpensive seats that will take you don to the bottom of the tub and bring you back up by remote. If you google bath tub lifts there are many to choose from. I think they range from $200 to $550. I bought the 550 one because it raised up 4 inches higher than the others I found and I needed that extra height to easily get up from the chair. I absolutely love it and worth every penny. Just saying in case anyone is interested. I first looked at the walk in tubs but the seats were lower within the tub and it was hard for me to rise from the seat. (And of course, they are much more expensive. With this lift you don't have to have your bathroom torn out -- it a lightweight contraption weighs about 20 pounds and just sets down in the existing tub you have. I think it's great !!!

REPLY
lindam272 | @lindam272 | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Found this on the National Jewish Hospital website regarding pink slime: Pink Slime and NTM - Recently, we discovered that whenever a biofilm sample has pink-pigmented bacteria (Methylobacterium), there are no NTM. Evidently, the two cannot coexist in biofilms. Taps or showerheads in a home with NTM don’t have Methylobacterium. As not all taps or showerheads in a home will have NTM, use those that show evidence of a pink scum or film; the pink scum will be seen on shower curtains, shower walls, or in crevasses in a shower or sink.

REPLY
tdrell | @tdrell | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Lindam272....you are a genius for finding this!!! Tdrell

REPLY
ling123 | @ling123 | Jul 22, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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 don't see pink film in the shower.But I do see pinkish water ring in the toilet that tells me that it's time to scrub the toilet. Does that count?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Yes, it counts.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 23, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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Thank you Linda for posting this. It is nice knowing that there is an info source that we can check back on. I find this pink methylobacterium an interesting thing. Wonder if they are using it in any way to come up with a drug to combat MAC?

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