1. < MAC & Bronchiectasis

Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 20, 2018
In reply to @heathert "@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot..." + (show)
@heathert

@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot of MAC/bronch people on this site (it takes 2 CF genes to have CF) a way back, having 1 CF gene means lung issues and low BP etc, very interesting. Windwalker have you been tested for the CF gene?

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@heathert Yes, I was tested in 2016 when I went through the pre-qual for lung transplant. They test you for EVERYTHING. I tested negative. It was an interesting process for the pre-qual testing. As a result, they can tell you everything you have ever had or were exposed to in your lifetime from the thorough bloodwork they do.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 20, 2018
In reply to @heathert "@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot..." + (show)
@heathert

@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot of MAC/bronch people on this site (it takes 2 CF genes to have CF) a way back, having 1 CF gene means lung issues and low BP etc, very interesting. Windwalker have you been tested for the CF gene?

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@heathert I find it interesting that the Alpha-1 gene acts similar to CF. The double ZZ can cause death, or extreme illness, or very few symptoms if any. (My mom passed away at age 58 from it.) A carrier of one of those genes, can experience chronic lung illnesses. I am a carrier of alpha-1 (got it from mom) They know more about the full blown Alphas, but not the carriers. They still don't know how or why a carrier gets lung disease.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 20, 2018
In reply to @margiebanks "@windwalker Thanks for the great info. I've been scrutinizing my original tests results today and he..." + (show)
@margiebanks

@windwalker Thanks for the great info. I've been scrutinizing my original tests results today and he ddnt do susceptibility testing on the MAC, just the pseudo. Said that MAC had too many and we would treat w the big 3. My insurance covers the testing he should order it. When I go to the Labcorp site it says lots of docs prescribe based on their experiences. Is zithromycin different
from Azithromycin? That was part of my big 3.

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@margiebanks Margie, your dt probably didn't ask for the suseptibility test because Labcorp was doing the test. That lab is not equipt to do specie/suseptibility(mac) testing. For your future info, your dr can send your sputem samples to the Mayo Clinic's lab for testing.

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auntnanny | @auntnanny | Nov 20, 2018

windwalker --- I know a lady with Natonal Jewish who was on it a couple of years ago. She said she was never tested prior to starting the med. I'm wondering why he wants me to come up to be tested. Have you heard of anyone who cannot take it?

REPLY
heathert | @heathert | Nov 20, 2018
In reply to @windwalker "@heathert Yes, I was tested in 2016 when I went through the pre-qual for lung transplant...." + (show)
@windwalker

@heathert Yes, I was tested in 2016 when I went through the pre-qual for lung transplant. They test you for EVERYTHING. I tested negative. It was an interesting process for the pre-qual testing. As a result, they can tell you everything you have ever had or were exposed to in your lifetime from the thorough bloodwork they do.

Jump to this post

@windwalker Wow that sounds very interesting Terri, I diddnt know they could do that.

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heathert | @heathert | Nov 20, 2018
In reply to @windwalker "@heathert I find it interesting that the Alpha-1 gene acts similar to CF. The double ZZ..." + (show)
@windwalker

@heathert I find it interesting that the Alpha-1 gene acts similar to CF. The double ZZ can cause death, or extreme illness, or very few symptoms if any. (My mom passed away at age 58 from it.) A carrier of one of those genes, can experience chronic lung illnesses. I am a carrier of alpha-1 (got it from mom) They know more about the full blown Alphas, but not the carriers. They still don't know how or why a carrier gets lung disease.

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@windwalker so interesting. I do not have the Alpha-1 gene, but interesting that it is similar to CF. My Dad always got bad chest infections, coughed alot, phlemy etc and I found a book in his library at home, on clearing the lungs positions and methods which was very very old so I guess his Mum or Dad had lung problems also. That nasty CF gene.

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ling123 | @ling123 | Nov 21, 2018
In reply to @heathert "@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot..." + (show)
@heathert

@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot of MAC/bronch people on this site (it takes 2 CF genes to have CF) a way back, having 1 CF gene means lung issues and low BP etc, very interesting. Windwalker have you been tested for the CF gene?

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@heathert How did you get tested for CF gene? Did you request the test or did your doctor initiated it?

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1 reply
marilyns | @marilyns | Nov 21, 2018
In reply to @windwalker "@heathert Thank you for posting this article. It goes along with what my dr said to..." + (show)
@windwalker

@heathert Thank you for posting this article. It goes along with what my dr said to my husband and I when we first consulted with him in 2013. He said that bronchiectasis was very much the same as CF without the CF gene. And it has to do the the proteins that we lack to protect the lungs from various bacterias that we breathe in. It is funny, I guessed it was a protein issue back in 2007. I did all kinds of research online through NIH, Mayo, and institutes in other countries including the UK, Germany & Japan. I had notebooks that looked like a mad scientist was trying to figure out a great mystery. Well, I WAS trying to figure out a great mystery. I was stymied as to why an otherwise healthy person (me) was so incredibly ill. It all pointed to a protein issue. As I recall, it was a B protein of some sort.

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CF, meaning cystic fibrosis?

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1 reply
heathert | @heathert | Nov 21, 2018
In reply to @ling123 "@heathert How did you get tested for CF gene? Did you request the test or did..." + (show)
@ling123

@heathert How did you get tested for CF gene? Did you request the test or did your doctor initiated it?

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@ling123 I asked my specialist for the test as I saw others on this site had it and she agreed it would be interesting, she organised it through the local hospital. Let me know if you get the test done. They always seem to test for the Alpha and zz test but not the CF.

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1 reply
heathert | @heathert | Nov 21, 2018
In reply to @marilyns "CF, meaning cystic fibrosis?" + (show)
@marilyns

CF, meaning cystic fibrosis?

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@marilyns yes. I have 1 Cystic Fibrosis gene, you have to have 2 CF genes to have Cystic Fibrosis, however having 1 has effects on the body also.

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