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 @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.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
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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Hello Kathryn, I truly do understand that the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. When I asked what to do .. because I was not aware .. I was told that the way you handle it is the following:

You can control your account settings here: https://connect.mayoclinic.org/account

OR you can: - Turn off all email notifications
OR you can - Select to receive only those groups and discussions you follow

Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/ Colleen Young, Connect Director@colleenyoung

PS: You can also click unsubscribe at the bottom of any email you receive from Connect.

Hope the above helps! Come back to our Forum as you are able .. we will be here for you as you need us .. we will STILL be your anchor if hard times come! Hugs to you! Katherine

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 21, 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.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
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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Great tips @katemn!

REPLY
bboxer | @bboxer | Dec 23, 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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I live in Viera and have been going back and forth to Mayo for several weeks and next appointment is Jan 6. Let me know maybe we can share rides some time. <br><br>p.s. btw I don't know what your opinion is but our experience at Mayo (wife and I ) has been nothing but fantabulous!!!<br>

REPLY
maryjo2sell | @maryjo2sell | Dec 24, 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!

Jump to this post

Very happy to hear you are so pleased with the Florida Mayo. I do not have an appointment yet. it has been difficult to find a good pulmonaligist locally.

REPLY
tdrell | @tdrell | Dec 24, 2016
In reply to @katemn "@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful..." + (show)
@katemn

@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

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Katherine....have a great holiday season...happy and healthy! I will leave for NJH to start my long awaited evaluation on January 5 2017 with Dr Huitt who l admire and others who have had her ...seem to also. I have all my doctors here...internist, Pulmonologist, ID, allergist who I regard highly but non the less know they are not NTM specialists. They are very professional and pleasant about me getting the "expert" opinion on my MAC. I had a very successful cataract removal last week since l knew l could not be checked for side effects on optic nerve with a cataract hiding the nerve....so that is done and went flawlessly and that new to me DR has had other clients with NTM so that is good..I set up appts every three months to be checked by him if l go on the ethambutol.

all you fellow NTMers will have an ironic laugh.....l realized that l would be in deep trouble post op from my horrible cough..which would disrupt all the work done on the eye.....so fortunately the pharmacist at Walgreens reecommended a strong anti cough medicine to take post operatively to stop my cough....Delysum....mostly dextromethorphan. and it worked! the cough was supressed although l was gorked out totally but ...that is ok...l rested and slept.
Next project ....packing for the long time away from home..
Any questions anyone has that l should ask the experts????
I have one...why cannot NTM be caught from Welll water..? and if not....if the well water goes thru a refrigerator with a filter and then an ice maker....can the NTM be caught.
any more???
terrid
Merry Xmas...Happy Hanukah....Happy NEw year to all

REPLY
cila | @cila | Dec 24, 2016
In reply to @katemn "@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful..." + (show)
@katemn

@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

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Great Imee! I'm happy for you. We hope for the best all the time and look at the bright side of life. Wishing you all a Blessed and Merry Christmas. With the coming of 20017 we need to leave all the worries of the critters on our lungs. Hopefully the New Year will bring Holiness, Happiness and healthy. Have you all in my prayer! cila.

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Kathryn S Wilbur | @kwilbur | Dec 24, 2016

Wonderful thoughts.

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lindam272 | @lindam272 | Dec 26, 2016
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Hi, Everyone! I am new here. I found this forum a few days ago when Googling MAC, which I have been diagnosed with. I also have bronchiectasis (diagnosed in 2014 but also showed up in a previous 2008 CT scan but never addressed) but in addition to that, was diagnosed last December with Atypical Cystic Fibrosis. I took the genetic test and do not have the gene mutation but I do have the symptoms. I do a saline breathing treatment 2xday and use the Aerobika and get up anywhere from 2 - 3 tbsps. of mucus each time I do a treatment. I have a sporadic, typically dry cough unless I have some mucous floating around, in which case I have to clear that but that's not always easy if I'm in public. I began my MAC treatment on 12/17, starting with the Azythromycin 250 mg. Today I begin the Ethambutol 1200 mgs and next week the Rifampin 300 mg. I'm blessed to have someone in my office who has Cystic Fibrosis and also have MAC (although I feel horrible feeling blessed from her illness). She has been able to help me and give me some advice on the meds. Just seeing her show up at work every day tells me there is hope for a "normal" life - even if it's a new normal! This forum is amazing and am glad to have you all as I have learned so much in the first 11 pages! I am replying on your post, Sophie, as I am a prayer warrior and am surrounded by prayer warriors. I believe that is my first line of defense! I am completely dependent on my relationship with God to get me through this. I prayed over my medicine (as strange as that sounds!) and my Sunday School class laid hands on me and prayed over me for protection against the side effects. I will not let this disease become who I am but just an annoyance that I will deal with as needed. I have too much to do! I have stopped working out for a few weeks but will go back to it in the next month. I was having trouble breathing and felt like I wasn't getting the full benefit of my workout. I look forward to reading the rest of the posts (8 more pages to go before I'm caught up!) and benefitting from the knowledge and experience from you all. Oh, BTW, I'm 65 yrs old, female and live in Phoenix, Arizona. I had pneumonia a couple of times in the 90's and Valley Fever in 2008. This was all originally diagnosed as allergies after a persistent cough wouldn't go away in the mid-90's.

REPLY
Sophie | @sophie1019 | Dec 26, 2016
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

I have been on the big "3" since july. At first my stomach hurt a lot, but now no problems. Make sure you get a hearing test and also keep your eyes checked as one of the meds can affect hearing/vision..

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lindam272 | @lindam272 | Dec 26, 2016
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Thank you! I have an appointment with the opthamologist at the end of this month and he will check me quarterly. I will call the audiologist tomorrow as their office is closed today. Linda

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