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!

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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:
- 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.

Katherine, Alumni Mentor | @katemn | Dec 20, 2016
In reply to @kaystrand "Someone asked the name of the test that determines inpart what your MAC is susceptible to..." + (show)
@kaystrand

Someone asked the name of the test that determines inpart what your MAC is susceptible to in terms of antibiotics- it's called a Susceptibility Panel I believe. I think most of them are sent in from all over to National Jewish and completed there. They take 8 weeks but are very important. There are many things my MAC is resistant to, so it would be a waste to take them.

Also Katherine, in have a very small area of brochiecstasis in my UPPER right lobe, very atypical as usually in lower. My pflegm seems to be from post nasal. I have no reflux, had 24 hour Impedence Test, negative. Not sure why throats pflegm, I use Mayo special nasal spray which helps. Some may be a strange habitual thing. Who knows!

Thanks
Kay

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@kaystrand, Kay, and @nannette Nan, just to clarify since I use the same helpful Mayo nasal spray. I was told by the Mayo pharmacy that each "kit" should be considered to expire in seven days .. even if there is a bit left in the bottle. That if you use 2 squirts each nostril .. 2x per day there really should not be any left in a bottle. I also questioned if I could just carry it in my purse while traveling .. not in a cooled medication packet. Nope .. would need to put together a new kit upon arrival at the new location. Just thought I'd share what I just learned. Katherine

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Katherine, Alumni Mentor | @katemn | Dec 20, 2016
In reply to @maryjo2sell "Hello. My name is Mary Jo. I am new to the forum. I only discovered you..." + (show)
@maryjo2sell

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same "cocktail" as many in this forum. I recovered and felt very well...until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much "stuff" as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

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@maryjo2sell Maryjo, we are ALSO glad that you found our Forum .. in numbers we have strength! I also have MAC as well as Bronchiectasis. I have been stable with the MAC since May 2015 but find the Bronchiectasis is no fun either .. all the coughing etc!

Please do let us know the website you found helpful .. we all learn from each other on this shared journey! A couple of websites I've learned from are: http://www.patient.co.uk/health/bronchiectasis-leaflet and http://emedicine.medscape.com/article/296961-clinical
Happy Holidays to all and a Hug to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Dec 20, 2016

Dear All
@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!
Happy Holidays to One and All! I have a special favor to ask of each of you.

I will be gone from our Forum from 12/24/16 to 1/04/17. I would ask of each and every one of you to watch for new people while I am gone .. remembering how scary it was for you when you were first diagnosed and didn't know where to turn. Please reach out to them .. AND to each other with welcoming arms .. supportive words and be as helpful to them and each other as you possibly can. You certainly can remember how tough that initial time was.

This said .. I hope your Holiday is as good as it can possibly be for you .. I will be thinking of you and hoping that the New Year will bring good things for each of us! With a full heart and thoughts of you .. I am sending Hugs! Katherine

REPLY
3 replies
imeehaigt | @imeehaigt | Dec 20, 2016

Hi All, I just the result of my NTM culture and hooray! IT'S NEGATIVE I am really happy since I was afraid that if the result is positive than the treatment will be complicated since I was in 3 anti biotics treatment before. Its wonderfull christmas gift for me. The only thing that I need to do now os deal with my bronchaectasis I dont worry that much anymore if I always have excesive sputum everyday since you guys made me fully understand about my disease. I cant thank you enough to be part of this group. I will continue to take diligence in taking care of myself do deep breathing everyday and lung clearance to prevent reinfection of NTM. Happy holidays guys GOD BLESS US ALL! Sending you My hug and kisses. I wish I live in US so at least I can visit you.

REPLY
1 reply
heathert | @heathert | Dec 20, 2016
In reply to @katemn "Dear All @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333..." + (show)
@katemn

Dear All
@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!
Happy Holidays to One and All! I have a special favor to ask of each of you.

I will be gone from our Forum from 12/24/16 to 1/04/17. I would ask of each and every one of you to watch for new people while I am gone .. remembering how scary it was for you when you were first diagnosed and didn't know where to turn. Please reach out to them .. AND to each other with welcoming arms .. supportive words and be as helpful to them and each other as you possibly can. You certainly can remember how tough that initial time was.

This said .. I hope your Holiday is as good as it can possibly be for you .. I will be thinking of you and hoping that the New Year will bring good things for each of us! With a full heart and thoughts of you .. I am sending Hugs! Katherine

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Merry Xmas and a happy New Year to you Katherine and everyone part of the MAC/MAI family, heres to a cure for us all in 2017!

REPLY
Katherine, Alumni Mentor | @katemn | Dec 20, 2016

@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful news! Just continue to do your "due diligence" .. now that you have educated yourself .. you now know how to take good care of your body .. so IT can take good care of YOU! YEAH! Just continue to do what you know you should be doing .. DON'T let up! I am SO happy for you! The New Year will be a GOOD year for you! Sending you a hug! Katherine

REPLY
4 replies
Katherine, Alumni Mentor | @katemn | Dec 20, 2016
In reply to @katemn "Dear All @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333..." + (show)
@katemn

Dear All
@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!
Happy Holidays to One and All! I have a special favor to ask of each of you.

I will be gone from our Forum from 12/24/16 to 1/04/17. I would ask of each and every one of you to watch for new people while I am gone .. remembering how scary it was for you when you were first diagnosed and didn't know where to turn. Please reach out to them .. AND to each other with welcoming arms .. supportive words and be as helpful to them and each other as you possibly can. You certainly can remember how tough that initial time was.

This said .. I hope your Holiday is as good as it can possibly be for you .. I will be thinking of you and hoping that the New Year will bring good things for each of us! With a full heart and thoughts of you .. I am sending Hugs! Katherine

Jump to this post

@heathert, Thank you so much Heather! Same to you .. I just hope/feel 2017 will be a GOOD year for ALL of us! Hugs! Katherine

REPLY
boomerexpert | @boomerexpert | Dec 20, 2016
In reply to @imeehaigt "Hi All, I just the result of my NTM culture and hooray! IT'S NEGATIVE I am..." + (show)
@imeehaigt

Hi All, I just the result of my NTM culture and hooray! IT'S NEGATIVE I am really happy since I was afraid that if the result is positive than the treatment will be complicated since I was in 3 anti biotics treatment before. Its wonderfull christmas gift for me. The only thing that I need to do now os deal with my bronchaectasis I dont worry that much anymore if I always have excesive sputum everyday since you guys made me fully understand about my disease. I cant thank you enough to be part of this group. I will continue to take diligence in taking care of myself do deep breathing everyday and lung clearance to prevent reinfection of NTM. Happy holidays guys GOD BLESS US ALL! Sending you My hug and kisses. I wish I live in US so at least I can visit you.

Jump to this post

YAAAAAY!!

REPLY
boomerexpert | @boomerexpert | Dec 20, 2016
In reply to @katemn "Dear All @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333..." + (show)
@katemn

Dear All
@apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!
Happy Holidays to One and All! I have a special favor to ask of each of you.

I will be gone from our Forum from 12/24/16 to 1/04/17. I would ask of each and every one of you to watch for new people while I am gone .. remembering how scary it was for you when you were first diagnosed and didn't know where to turn. Please reach out to them .. AND to each other with welcoming arms .. supportive words and be as helpful to them and each other as you possibly can. You certainly can remember how tough that initial time was.

This said .. I hope your Holiday is as good as it can possibly be for you .. I will be thinking of you and hoping that the New Year will bring good things for each of us! With a full heart and thoughts of you .. I am sending Hugs! Katherine

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Back atcha!

REPLY
Kathryn S Wilbur | @kwilbur | Dec 20, 2016
In reply to @katemn "Heather, you are NOT going to believe this .. BUT when reading this article .. something..." + (show)
@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
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http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html

Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.

The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”

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All you are doing is wondering, Katherine and others - but I need to get off this forum temporarily as I find it hard to find other e-mails I need to read. So, could you do that for me? And, I know I will be checking back in this summer. Very best, thank you for being my anchor through hard times. Kathryn

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