(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@pfists

Regarding coliadial silver
My naturalpathic Dr put me on it, so he must believe there is some merit. Mayo clinic doctors have sent him patients they haven't been able to help.
I have read up on its use quite a bit on and know it was used extensively before antibiotics and they still use it for burn patients There won't be extensive testing on it unless big pharma figures out how to make it into a drug for profit.
I don't think it alone has helped me or if it helped me at all. I always took a pretty small amount. I do know there was a problem with silver salts and all acumillating and causing blueish color.
But saying all that I wouldn't be comfortable nebulizing at all until research was done on it. There could be contaminates in the solution or something. I'm pretty careful about what I inhale avoid dust, scents smoke. I know that when bacteria comes in contract with silver from what I have read can't exist and it doesn't become resistant to colidal silver.
But I have an open mind and will keep researching.
Thanks for your concern!
Shari

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@flib…I am still digging to find info on nebulizing silver…One thing I came across was to not mix saline with colloidal silver. Salt will combine with some of the silver ions to make silver chloride, which is less effective against bacteria (purportedly hundreds of times less effective than ionic silver), and is mildly toxic. Maybe a few drops in distilled water might be a thought? There is so much conflicting info on alternative meds…but might be worth checking this out.
Kate

@windwalker …thanks for the info on the show. I will certainly watch it!

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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@cila Hi. I was just re-reading your posts to get a recap on your journey with us. I too have had the sensation of pain when I swallow and that the food is just sitting there in the bottom of my esophagus. I had my esophagus widened during an endoscopic procedure. I was told that I had narrowing in that area, and I would likely need it in another 5 yrs. It is five yrs later now, and I do feel like I need it done again. It is a piece of cake. They put you in a twilight anestisia (sp) and do a balloon thingy like when they do angioplasty on heart arteries.

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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What causes the swallowing problems? Is it advanced COPD or MAC? My husband is in the hospital with pneumonia and yesterday they did a swallowing test because he is also having some problems.

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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I have to "have my throat stretched" once or twice a year. It's the "balloony" thing. Not painful at all, nice drugs and takes about 20 minutes. I have what is called a "web" in my throat. It is over grown scar tissue caused, I believe, a few years ago by a pill I was unable to swallow and stuck in my throat until it dissolved enough to get down. I am fortunate to have a good doctor at University Hospitals here in Cleveland who has done the procedure many time. It does improve swallowing. My doctor said it is important to have someone very experienced with the procedure or s/he can "blow your throat out."

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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I think GERD and bronchiectasis are big contributors. My husband had his “gullet” stretched which has helped his swallowing/choking issues.

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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@irene5 Hi Irene! I tell ya, it made a big difference after I had mine stretched too.

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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@flib, Yet one more thing we have in common. We have quite the sisterhood going on, don't we?

@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 – for those of you that use the saline inhalation 7% twice daily — how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks – Barb

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@suzie2017, I cannot speak for eveyone else, but, my narrowing was cause most likely to GERD. The stomach acid that comes up often enough can cause erosion to the esophagus and/or Barrett's syndrome. The latter is when the rings in the esophagus harden and become restrictive. Both erosion and Barrett's can lead to throat cancer if mot caught and treated early. I have early stage Barrett's.

Oh good Terri!

@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 am SO sorry that I am jumping onto someone else’s post, but I just joined the group and was not sure where to post new one. I am SO thankful to find this wonderful group as it’s hard to find info. The Drs started me on the 3 medication 2 weeks ago. I had horrible side effects and they are going to see if I can tolerate the Rifampin only. Thinking of all of u. I’m located in the Atlanta area. Jae

@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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Welcome @jaejack! As you will find as you read through our posts, there's a variety of treatments beyond the "big 3" – recommend you explore all!

@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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@jaejack, Hi jaejack! Welcome to our group. Please don't worry about jumping into other people's posts; we all do it from time to time if we have something to add to the conversation. When you want to address or reply to someone, use the @name of that person in the beginning of your text. Do you see how I did that on this text to you? There is a lot of info on this site, you just have to poke around a bit to find it. You will get better at using the site as time goes on. You can learn things by reading over older posts, and by going to the Discussion board and clicking on a topic. Do you want to share more of what is going on with you?

@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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Jae, We have a support group who meets once a quarter at St. Joseph's hospital in Atlanta. We have a vast amount of information which is necessary with this illness. Our group also includes a doctor who has NTM. Send me a private message if you are interested.

I started on the Big 3 about three weeks ago and am actually doing better than I expected. Fatigue, nausea and headaches are my worst side effects. Can anyone advise when the headaches go away? Also, how would I go about finding a support group in New Jersey or even NYC? Thanks in advance for any advice.

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