(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

@ling123

@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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@ling123 That was exactly my thought process when I read Karl's post.

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@heathert

@windwalker timed mine yesterday and it took about 15mins.

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@heathert I think I need a Pari nebulizer!

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@windwalker

@heathert I think I need a Pari nebulizer!

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@windwalker I had one when in the Amakacin trial so when I finished I bought my own, fantastic nebuliser and no tubes so easy to clean!

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@alleycatkate

@flib. @windwalker Hi…Now I am confused about blowing back into the nebulizer. The video I posted shows to just keep the nebulizer in the mouth and blow back into it. ?? Hope that is not wrong. That is how I have been doing it.

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I know. I saw that video too some time ago and also another one. In both the mouth is not removed from the nebulizer…i.e. the person is exhaling back into the nebulizer which seems all wrong. However, if you take you mouth piece out to exhale you are losing some of the mist. Flib

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@ling123

@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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Exactly what I was thinking.Thanks, Flib

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@windwalker

@flib I wasn't taking into account that some mouthpieces have that little outlet valve or flap to allow exhaled breath to escape through. The main thing is to get the mist into the lungs.

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Thanks, Terri. My conclusion also. My nebulizer doesn't have any holes but I manage to exhale to the side and get the mist in. All this fun, I can hardly stand it.

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@windwalker

@ling123 That was exactly my thought process when I read Karl's post.

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@windwalker, I'm not gonna argue with anyone. All I have to go on is Mayo and the doctors who have diagnosed me. But there is a big difference between simple or acute bronchiectasis, and Chronic Bronchiectasis. Simple bronchi… is the result of bacterial infection. it is hard to control, and can be deadly. But if you can control, even kill, the bacteria, no more damage will be done. Chronic, on the other hand, owes its existence to misfolding and dying prions of protein. These prions, or proteins with autoimmune problems, often clone themselves a few times before they die. Then each clone repeats, and so on, putting their clone out into the blood stream. When they die, their carcasses work their way into body tissue, stack themselves into tiny water tubes called fibrils, and START doing their damage to the tissue. For instance, if the fibrils get into the lung tissues, it is these dead carcases that leatherize the tissues or make them enlarge, or mess up skin, or corneas, or stack themselves in the brain, or whatever. They are tiny, about a thousandth the width of a human hair. But because they are already dead, their existence is chronic and cannot now be stopped as bacteria can. At this point in time, science has no way to get them out of the body if the kidneys fail, and no way to stop them from forming. The fibrils only live for 2-3 hours, not long enough to take a hammer and beat the little buggers into submission. So they just keep doing their damage until after the person is dead. That is the difference. Nothing stops them, especially not their death. With the bacteria, they may be difficult to kill, but they can be stopped, at least theoretically. Acute bronchi…. is dangerous only as long as the bacteria is alive. Amyloid fibrils are dangerous only after they are dead. Then localized fibrils attach whatever tissue they can attach to. Some can go only to heart walls, or blood vessel linings. Some go after these, and kidneys, and toenails and corneas, for instance. It depends on their exact shape, elasticity, size, atomic weight, whatever, after they are dead and reformed into fibrils. If bacteria, it lives to damage. If protein prions, they die to damage.

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@oldkarl

@windwalker, I'm not gonna argue with anyone. All I have to go on is Mayo and the doctors who have diagnosed me. But there is a big difference between simple or acute bronchiectasis, and Chronic Bronchiectasis. Simple bronchi… is the result of bacterial infection. it is hard to control, and can be deadly. But if you can control, even kill, the bacteria, no more damage will be done. Chronic, on the other hand, owes its existence to misfolding and dying prions of protein. These prions, or proteins with autoimmune problems, often clone themselves a few times before they die. Then each clone repeats, and so on, putting their clone out into the blood stream. When they die, their carcasses work their way into body tissue, stack themselves into tiny water tubes called fibrils, and START doing their damage to the tissue. For instance, if the fibrils get into the lung tissues, it is these dead carcases that leatherize the tissues or make them enlarge, or mess up skin, or corneas, or stack themselves in the brain, or whatever. They are tiny, about a thousandth the width of a human hair. But because they are already dead, their existence is chronic and cannot now be stopped as bacteria can. At this point in time, science has no way to get them out of the body if the kidneys fail, and no way to stop them from forming. The fibrils only live for 2-3 hours, not long enough to take a hammer and beat the little buggers into submission. So they just keep doing their damage until after the person is dead. That is the difference. Nothing stops them, especially not their death. With the bacteria, they may be difficult to kill, but they can be stopped, at least theoretically. Acute bronchi…. is dangerous only as long as the bacteria is alive. Amyloid fibrils are dangerous only after they are dead. Then localized fibrils attach whatever tissue they can attach to. Some can go only to heart walls, or blood vessel linings. Some go after these, and kidneys, and toenails and corneas, for instance. It depends on their exact shape, elasticity, size, atomic weight, whatever, after they are dead and reformed into fibrils. If bacteria, it lives to damage. If protein prions, they die to damage.

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Thank you for this valuable info.

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@megan123

Thank you for this valuable info.

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What recommendations do members have regarding drinking water? Is tap water safe for someone with MAC? Would water through a Brita filter pitcher be better?

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@lch713 As per NJ, your drinking/bathing water is rid of MAC and all bugs including viruses with a 0.2 whole house water filtration system. Remember, it's not just drinking, but the water mist you inhale when showering or even bathing. I've installed such a system so now all my home's water is bug free! It is a bit of an investment: system purchase/installation is about $700 and filters run about $85 each…I concluded that my health, and prevention of costly/difficult treatments, was worth every penny!

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@lch713

What recommendations do members have regarding drinking water? Is tap water safe for someone with MAC? Would water through a Brita filter pitcher be better?

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lch713 I buy purified water and boil it. I carry my drinking water everywhere I go.If you use Brita filter make sure to boil it for 10 minutes. Cila.

Liked by heathert

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@lch713

What recommendations do members have regarding drinking water? Is tap water safe for someone with MAC? Would water through a Brita filter pitcher be better?

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@lch713 We installed an osmosis filter system under our kitchen sink. I really don't drink much water. I drink wine, soda, tea from water I have boiled….I mostly take baths, but do occasionally shower. we turned up the water temp on our water heater to 140 degrees, that is suppose to kill the mac. There is a topic on the Discussion Board. You can find the discussion board at the Connect Mac Group home page.

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@oldkarl

@windwalker, I'm not gonna argue with anyone. All I have to go on is Mayo and the doctors who have diagnosed me. But there is a big difference between simple or acute bronchiectasis, and Chronic Bronchiectasis. Simple bronchi… is the result of bacterial infection. it is hard to control, and can be deadly. But if you can control, even kill, the bacteria, no more damage will be done. Chronic, on the other hand, owes its existence to misfolding and dying prions of protein. These prions, or proteins with autoimmune problems, often clone themselves a few times before they die. Then each clone repeats, and so on, putting their clone out into the blood stream. When they die, their carcasses work their way into body tissue, stack themselves into tiny water tubes called fibrils, and START doing their damage to the tissue. For instance, if the fibrils get into the lung tissues, it is these dead carcases that leatherize the tissues or make them enlarge, or mess up skin, or corneas, or stack themselves in the brain, or whatever. They are tiny, about a thousandth the width of a human hair. But because they are already dead, their existence is chronic and cannot now be stopped as bacteria can. At this point in time, science has no way to get them out of the body if the kidneys fail, and no way to stop them from forming. The fibrils only live for 2-3 hours, not long enough to take a hammer and beat the little buggers into submission. So they just keep doing their damage until after the person is dead. That is the difference. Nothing stops them, especially not their death. With the bacteria, they may be difficult to kill, but they can be stopped, at least theoretically. Acute bronchi…. is dangerous only as long as the bacteria is alive. Amyloid fibrils are dangerous only after they are dead. Then localized fibrils attach whatever tissue they can attach to. Some can go only to heart walls, or blood vessel linings. Some go after these, and kidneys, and toenails and corneas, for instance. It depends on their exact shape, elasticity, size, atomic weight, whatever, after they are dead and reformed into fibrils. If bacteria, it lives to damage. If protein prions, they die to damage.

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@oldkarl Wow! You have given me something to chew on. I love learning and researching medical issues. I will look this stuff up and learn what I can. Thank you.

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@windwalker

@lch713 We installed an osmosis filter system under our kitchen sink. I really don't drink much water. I drink wine, soda, tea from water I have boiled….I mostly take baths, but do occasionally shower. we turned up the water temp on our water heater to 140 degrees, that is suppose to kill the mac. There is a topic on the Discussion Board. You can find the discussion board at the Connect Mac Group home page.

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@lch713 @windwalker according to NJ, new research shows that turning up water heater temp doesn't kill MAC, but instead makes it heat resistant…they now recommend maintaining temp no higher than 130. Bottom line: wo/whole house filter you're ingesting MAC.

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It just seems impossible to stay up with all the different recommendations sometimes. Thank u for sharing this! Guess I’m on “overload “ trying to figure what to do. Thanks!!!!!

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