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.

jentaylor | @jentaylor | Jun 25, 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

Jump to this post

@irene5, Yes, it is indeed nice to have a bond with others...I feel so blessed to have found this group of amazing women (not that there can&apos;t be a males...there just doesn&apos;t seem to be at this time)!!! It&apos;s amazing how just having someone truly understand you, can make all the difference! It certainly makes me feel so less alone! Thanks to you, all!!! ~Jen 🙂

REPLY
jentaylor | @jentaylor | Jun 25, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@windwalker Hi Terri, Yes, I did have a positive culture for pseudomonas & insurance still denied it. Was on Cefipime IV for 21 days.

REPLY
JK | @contentandwell | Jun 25, 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

Jump to this post

@heathert This is something I have come to learn too much. That's why I now favor taking the trouble to go to Boston for anything other than the smallest problems.
JK

REPLY
jentaylor | @jentaylor | Jun 25, 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

Jump to this post

@windwalker Hi Terri & all, My friend from Tanzania said something interesting...she said, "You should go see a doctor in Africa...one that can look for & recognize an African disease...not American." That has always stuck with me. I have been evaluated by 44 physicians in the 10 years that I have been ill, including ones that specialize in Tropical Diseases, and no one has been able to put a name to my lung disease. Many have suspected & wondered if it is some disease that I caught while in Kenya. I got sick during my second week there which we thought it to be Malaria but when I came home & was tested (smear), I was negative. We don't know for sure what I was sick with at the time...who knows... If I had a name to my disease, maybe we would know a treatment for "it".

There ought to be a LOG of illnesses/diseases that doctors could then plug your signs & symptoms into & it would spit out a list of other (not violating HIPPA) demos of patients including treatments tried & whether the treatment was a success or not.

It would tract all of these sicknesses & diseases. Maybe then physicians, researchers & scientists could collaborate & hopefully find ways to better diagnose & treat people. I'm all for a NATIONAL REGISTRY...I know there are concerns of privacy but for me personally, I'm more worried about being sick & focusing on getting better than I am of someone knowing my medical profile. Anyway...that's how I feel. I get so frustrated when red tape gets in the way of following trends & reseaching data to ultimately treat or cure various diseases. Best, Jen 🙂

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 25, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@jentaylor Well,
that is crazy that you kept getting denied for it and Katherine and I can get it
covered. I have been watching the National Jewish Health videos tonight and the
conference videos in D.C. for what I have seen, the Cefipine is also a very good
med and it seemed to work for you.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 25, 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

Jump to this post

@jentaylor Did
you sign up for the NTM registry? I have. I am not sure if it is connected to a
national registry or not.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 25, 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

Jump to this post

@jentaylor That
suggestion to go to a doctor in Africa is not a bad idea. Makes me wonder if I
didn&apos;t catch something weird overseas? Because the Mayo is still scratching
their heads about why my lung function has deteriorated to this point. In a
related subject; I caught Valley Fever in Arizona. I had a severe case of it and
thought I would die. I moved to Virginia, and anytime I would include it in my
history, the drs would ask me what that was. It is unfamiliar to many doctors on
the east coast. So, your friend&apos;s idea is an interesting concept.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 25, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

@unicorn Hi Crista. Wondering what your current status is.
Where are you at in terms of your meds and seeing a good  dr? Don&apos;t mean to
be so personal, just worry about you. You may have posted something more recent,
but I sometimes miss e-mails because I have a bunch. I know in the past you were
going on and off your antibiotics. I hope you are doing ok. hugs - Terri
M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 26, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

@katemn Hi
Katherine! Did you learn something more about the colonizing?
 

REPLY
jentaylor | @jentaylor | Jun 26, 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

Jump to this post

@windwalker Oh, no I have not! How do you do that? I can look it up...

REPLY
View MoreView Less
Please sign in or register to post a reply.