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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017
In reply to @tdrell "Cilia my appt period at NJH started at 7am on a Thursday in January....routine blood work....a..." + (show)
@tdrell

Cilia my appt period at NJH started at 7am on a Thursday in January....routine blood work....a 6 minute walk in respiratory therapy to see if I needed Oxygen while there...an aide came down from adult day unit where you will have a room/bed/ to rest in between appts. Most days end at 5pm.you order no cost from menus in room all 3 meals. There are nurses on floor for teaching and meds if they start you there.
So I had appts on Friday then weekend with nothing going on....then appts the next week....Monday thru Friday....except one item I had for Wednesday was cancelled soooooo had a day off.
I stayed in hotels with shuttles since I had no car....so I used the list from NJH re hotels giving rates. If you have a car, you will save money by not having shuttle,.....parking is free at NJH.
They spread the appt over several weeks so they can add tests and appts as needed.
I had had a lot of tests done prior to arrival and had all sent in advance to NJh....none the less lots were added.
What other questions do you have? Tdrell

Jump to this post

@tdrell Wow,
Terri, NJH is super thorough. I was going to go there in 2007 when I lived in
Az. My hubby talked me out of it because he did not realize the seriousness of
MAC at the time. I have since learned to listen to my gut feelings.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017
In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)
@lindam272

Hi, All, - I had my check up with my ID doc a couple of days ago. I went with a yellow pad and a page full of questions, primarily initiated from posts on this forum. I also went back and reviewed my sputum text results from the beginning before my appt. I have 2 docs collecting my lovely mucous - my ID doc and my CF doc. I realized in reviewing that my ID doc had the results of a clean test in March and my CF doc had a clean test from me in June! (I started the Big 3 in December 2016 and have taken them every day) So I've had 2 clear sputum tests and didn't even know it. No one told me and I didn't know what I was looking at when I reviewed the results - until you all came along! I just took another sample into the lab earlier this week which I know will come back clear. I've had some brain fog lately - enough to cause a small accident while backing out of a parking space last week. I've also had some other close calls and am having trouble keeping things straight in my business as a Realtor. I mentioned to my ID doc and told him in light of the fact that I have 2 samples clear and that I'm breathing better, I am going off the Big 3 meds. He wanted to keep me on until March 2018 to "be sure" those little buggers were dead. I said - Not happening! I'm off now. They are dead. I know they are dead. So prayers that they are! I have a CT scan scheduled for early next month about 10 days before I go back to see my ID doc and review this CT with my last one done last November. You all - most especially our Mentor, Katherine, are the best! I appreciate each and every one of you so much! I will keep you posted on my final results, but I know it will be a good outcome. Blessings! Linda M

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@128128terry11t Thank
you for responding. Noted.
 

REPLY
heathert | @heathert | Jul 16, 2017
In reply to @cila "Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my..." + (show)
@cila

Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my throat is hurting and I'm losing a little bit of my voice. I'm not informing my pulmonary Dr. b/c I called NJH and I got an appt. there. Thanks for everything. I'm so glad I'm on this forum you guys help me a lot.

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@cilla yes you can get Strepfen over the counter, its just Strepsil with anti inflammatory direct to the throat, it is a fantastic product. I am having a CT scan on friday then see my doc the following Friday so will let you know how I get on, the last CT around 6 mths ago showed nodules and cavities disappearing but some nodules untouched.

REPLY
lindam272 | @lindam272 | Jul 16, 2017
In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)
@lindam272

Hi, All, - I had my check up with my ID doc a couple of days ago. I went with a yellow pad and a page full of questions, primarily initiated from posts on this forum. I also went back and reviewed my sputum text results from the beginning before my appt. I have 2 docs collecting my lovely mucous - my ID doc and my CF doc. I realized in reviewing that my ID doc had the results of a clean test in March and my CF doc had a clean test from me in June! (I started the Big 3 in December 2016 and have taken them every day) So I've had 2 clear sputum tests and didn't even know it. No one told me and I didn't know what I was looking at when I reviewed the results - until you all came along! I just took another sample into the lab earlier this week which I know will come back clear. I've had some brain fog lately - enough to cause a small accident while backing out of a parking space last week. I've also had some other close calls and am having trouble keeping things straight in my business as a Realtor. I mentioned to my ID doc and told him in light of the fact that I have 2 samples clear and that I'm breathing better, I am going off the Big 3 meds. He wanted to keep me on until March 2018 to "be sure" those little buggers were dead. I said - Not happening! I'm off now. They are dead. I know they are dead. So prayers that they are! I have a CT scan scheduled for early next month about 10 days before I go back to see my ID doc and review this CT with my last one done last November. You all - most especially our Mentor, Katherine, are the best! I appreciate each and every one of you so much! I will keep you posted on my final results, but I know it will be a good outcome. Blessings! Linda M

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I'm not a swimmer so I don't get in them much. I was at my sister's house a couple of weeks ago and the whole family was out in the pool, so I just floated around for a little bit. I don't get my face and hair wet!

REPLY
heathert | @heathert | Jul 17, 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 @tdrell, I remember that article including the pinkish bacteria also, it was mentioned on the NJH website, maby under sterilizing shower heads? There is an article about their being higher numbers of MAC in the air around any creeks or ponds, any body of water I guess, which is very interesting also, I will see if I can find it.

REPLY
heathert | @heathert | Jul 17, 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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@tdrell no I diddnt have a plastic surgeon, I had an orthapaedic surgeon, you cannot even see the scars now. I had both hands done together, was a little tricky for a week, but not as bad as I thought.

REPLY
Mariposa | @mariposa | Jul 17, 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

Tdrell, yes it was not the usual airline, Canadian Pacific Airline , I started with in 1969, we had foreign bases so I lived in Honolulu for three years,flying to Fiji and Sidney, Australia.

I was also based in Lima ,Peru flying to Santiago,Chili and Buenos Aires, Argentina.
That was in the early eighties, they had a revolution going on there so we lived 45 Minutes outside of Lima in an unbelievable hotel that looked like a little village in The mountains...
one of our captains called it "The Land Of Ozz"

The first years , we would fly to Athens and stay one week, we would go to the islands and stay with the locals...we would come into Athens go to the hotel and ,take the uniform off and put on our jeans and rush to the boats that Onassis owned and go to the islands.

I also had a lot of nurses has colleagues, we had the best of times.
Talking about money..... I use to go to Acapulco ( which was really nice the in the 70's )on my days off I would go for a week, at the Holiday Inn right on the beach the room cost $10.00 per night

Not having any money for me it was the best of jobs,

Sorry , I am reminiscing too much......Hugs, Andrée

REPLY
heathert | @heathert | Jul 17, 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 It was when my 2 eldest children took on a paper run, of around 350 houses. I would fold all their papers and use the palm of my hand to run along the folds to make them stay folded, we did the run for 7 years.

REPLY
Mariposa | @mariposa | Jul 17, 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

PS: Flying and travelling that much did have its down sides but we did not see them we where young. Yes the conditions did affect the immune system, the jet lag etc. ..we had to take good care of ourselves..

There was a price to pay, my partner who was a pilot for forty years contacted Leukemia ( bone cancer) about four years after he retired,he was diagnosed with Multiple Myaloma, we where living in Mexico then in Lake Chapala, we had to come back to Vancouver when we found out about his cancer, he was sick for four years and he passed away eight years ago.
The Specialist told us it was due to radio activity in the cockpit...lots of pilots get brain cancer also after many years surrounded by all the electrical equipment for hours and years.

He loved flying so much that I remember he once said that ,if he had too he would pay to to his job, so he was happy with his career but left way too early.

Best, Andrée

REPLY
heathert | @heathert | Jul 17, 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

@mariposa, Andree, that is just awful, you have been through alot with your partner. I had no idea that being a pilot had such risks.

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