Have Bronchiectasis, recently diagnosed with pseudomonas
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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Flib
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@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.
@terri, I went to see a neurologist for my feet. She gave me a blood test, including vitamin B 6. Turns out my b6 level was so high it was toxic. It takes a year or two to eliminate…it is not soluble and gets stored in muscles. She told me to check labels, especially energy drinks which almost always have a lot of B6. That was about 7 months ago. I had a recent test; had to be sent to a lab in Virginia as B6 testing is not a routine blood works test. Three weeks later I got the results. I think a normal range was like 1.2 to 2.1…mine was 126. Really high. I'm wondering what a B protein is. High B6 is one of the causes of peripheral nephropathy. My primary doctor, very knowledgeable
had never herd of B6 toxicity. Just wondering if any Mayo buddies have vitamin or protein problems. Flib
auntnanny
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windwalker……. I'm curious as to whether you were tested to see if you could tolerate tobramyacin before you started it. My Mayo doctor wants me to come to Rochester to be tested with it before I start a program of 30 days on — 30 days off. No other antibiotic on the "off" month. He thinks a year of that might rid the pseudemonas. My appointment is Feb 6th — hoping snow is not knee deep up there at that time.
Terri Martin., Volunteer Mentor
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@auntnanny windwalker……. I'm curious as to whether you were tested to see if you could tolerate tobramyacin before you started it. My Mayo doctor wants me to come to Rochester to be tested with it before I start a program of 30 days on — 30 days off. No other antibiotic on the "off" month. He thinks a year of that might rid the pseudemonas. My appointment is Feb 6th — hoping snow is not knee deep up there at that time.
@auntnanny Hi Jan! I have been on the toby since 2016 without any problems. I will try it again next month (per my dr) and see what happens. My pseudomonas is considered 'gone' , but my dr says it never truly is. He said it resides deep down in the lungs. We are considered infected when they colonize.
Terri Martin., Volunteer Mentor
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@flib @terri, I went to see a neurologist for my feet. She gave me a blood test, including vitamin B 6. Turns out my b6 level was so high it was toxic. It takes a year or two to eliminate…it is not soluble and gets stored in muscles. She told me to check labels, especially energy drinks which almost always have a lot of B6. That was about 7 months ago. I had a recent test; had to be sent to a lab in Virginia as B6 testing is not a routine blood works test. Three weeks later I got the results. I think a normal range was like 1.2 to 2.1…mine was 126. Really high. I'm wondering what a B protein is. High B6 is one of the causes of peripheral nephropathy. My primary doctor, very knowledgeable
had never herd of B6 toxicity. Just wondering if any Mayo buddies have vitamin or protein problems. Flib
@flib Yikes! How in the world did you get high b-12 poisoning? Were you drinking those energy drinks?
Terri Martin., Volunteer Mentor
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@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?
@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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Terri Martin., Volunteer Mentor
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@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?
@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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Terri Martin., Volunteer Mentor
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@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.
@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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@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.
@windwalker Wow that sounds very interesting Terri, I diddnt know they could do that.
heathert
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@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.
@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
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@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?
@heathert How did you get tested for CF gene? Did you request the test or did your doctor initiated it?
marilyns
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@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.
CF, meaning cystic fibrosis?
heathert
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@ling123 @heathert How did you get tested for CF gene? Did you request the test or did your doctor initiated it?
@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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heathert
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@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?
Liked by ling123