(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

@beverly1945

@windwalker hi question do you know while in remission is there anything to take on a daily bases for protection against another brakeout especially bf the flu season that previous set mine off

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@beverly1945 Hi Beverly. My doctor has me on Cipro for 10 days every other month. And then om Tobramycin for 28 days every other month. i am on these as a preventative measure. Plus, I get a flu shot every year by Oct 1. Then. i avoid stores and restaurants during the winter holiday season. I don't like to take the risk of picking up germs at those times. Wash hands A LOT!

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@boomerexpert

you'll have more opportunities…and yes, docs are quite competitive and don't like knowing that other countries are ahead of us

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@irene5, @boomerexpert Subtle neuropsychiatric and neurocognitive changes in hereditary gelsolin amyloidosis (AGel) amyloidosis is a great read from U of Helsinki hospital. Also, Oral Health for Hereditary Gelsolin Amyloidosis.

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@oldkarl

@irene5, @boomerexpert Subtle neuropsychiatric and neurocognitive changes in hereditary gelsolin amyloidosis (AGel) amyloidosis is a great read from U of Helsinki hospital. Also, Oral Health for Hereditary Gelsolin Amyloidosis.

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Thank you!

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@oldkarl

@irene5, @boomerexpert Subtle neuropsychiatric and neurocognitive changes in hereditary gelsolin amyloidosis (AGel) amyloidosis is a great read from U of Helsinki hospital. Also, Oral Health for Hereditary Gelsolin Amyloidosis.

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@oldkarl Not sure what all that means, but thanks!

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@boomerexpert It is simple. If you get hereditary Gelsolin Amyloidosis, you will, as part of it, get an "amorphous (shapeless) deposit of dead protein prions (cells) in the top of your head. This will make you depressed and easily angered. It will affect everything you do. The source is the Gelsolin program and clinic at the University of Helsinki in Finland. Finland is apparently where Gelsolin started, and the Vikings spread it around the world.

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@jms64

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.

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@jms64 I have the same kind of chest pain too. Chest discomfort, tightness and pressure… not a good sign. Mine followed by some coughing up blood and hospital stay…

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@heathert

Hi all there is a message https://www.ntminfo.org/ about writing to the FDA to approve Inhaled Amikacin, this is a very important drug, I was immune to the big 3 but Amikacin got me a clear MAC result when I was in the trial. Please write to the FDA.

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@heathert Thank you for posting this. How about each of us check in here and say that we did this? Is the deadline coming up soon?

Liked by heathert

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@pattriciaann

@irene5 I cannot get private messages to work either. It did a couple times now I get error. Also tried sending through email to @windwalker

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@patriciaann Hi. I just sent you a pm. Look and see if you can reply back. Thnx!

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@amn17

@jms64 I have the same kind of chest pain too. Chest discomfort, tightness and pressure… not a good sign. Mine followed by some coughing up blood and hospital stay…

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@amn17 Hi. I used to get that tightness in my chest a lot when I had an active infection. I used Breathe Easy tea by Traditional Medicines. It has various medicinal herbs and root herbs in it. It worked great to open the chest and relieve the tight feeling. It also worked well to relieve my cough and congestion. I bought it at Kroger's grocery in the Natural Food aisle. Krogers is the same as Fry's in some states. I am sure you can order it online too. I took a box of it to an American Lung Association meeting I chaired once. We made the tea and the patients that tried it couldn't believe the instant relief. I hope you feel better soon!

Liked by heathert

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Hey everyone! There is a PBS special about the Mayo Clinic that will air this Tues & Wed night Sept. 25 & 26. 9:00 p.m. in my area. I saw the pre-screening of it last week, it is awesome! And very moving. Well worth watching.

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@windwalker thanks I hope I get it here .Do they speak about MAC

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@windwalker

@heathert Thank you for posting this. How about each of us check in here and say that we did this? Is the deadline coming up soon?

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@windwalker not sure about deadline, I have written to them and got a standard reply saying they would consider my info. Fingers crossed. On the NTM site they suggest what to write about, very handy.

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@windwalker

@amn17 Hi. I used to get that tightness in my chest a lot when I had an active infection. I used Breathe Easy tea by Traditional Medicines. It has various medicinal herbs and root herbs in it. It worked great to open the chest and relieve the tight feeling. It also worked well to relieve my cough and congestion. I bought it at Kroger's grocery in the Natural Food aisle. Krogers is the same as Fry's in some states. I am sure you can order it online too. I took a box of it to an American Lung Association meeting I chaired once. We made the tea and the patients that tried it couldn't believe the instant relief. I hope you feel better soon!

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I, too, use Breathe Easy tea…good stuff

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@oldkarl

@boomerexpert It is simple. If you get hereditary Gelsolin Amyloidosis, you will, as part of it, get an "amorphous (shapeless) deposit of dead protein prions (cells) in the top of your head. This will make you depressed and easily angered. It will affect everything you do. The source is the Gelsolin program and clinic at the University of Helsinki in Finland. Finland is apparently where Gelsolin started, and the Vikings spread it around the world.

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Thanks for the explanation… wonder if this has any connection to Alzheimers…

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@windwalker

Hey everyone! There is a PBS special about the Mayo Clinic that will air this Tues & Wed night Sept. 25 & 26. 9:00 p.m. in my area. I saw the pre-screening of it last week, it is awesome! And very moving. Well worth watching.

Jump to this post

Yes I’m hoping to watch it tomorrow!!! But I also has it on my DVR so if I do fall asleep I can always watch it again. Since I started Toby I get so tired on evenings and sleep through an entire movie! But I did completed 1 week of Tobramycin!!!! I am still struggling with some side effects but it’s getting better daily. Thanks Terri.

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