First about my clinic...If any of you sinus problem or CFRD vets want to comment, please do so.
Well I got back from my CF clinic today, with mixed reviews. My PFT's were @ 101%. That's the good news, and I was clear except for my two lower lobes. The bad news is that my doc REALLY wants me to get sinus surgery...He feels most of my problems are related to my sinuses draining into my lungs, etc etc. So I finally mentally conceded to that aspect, and will be getting a CT scan and then plan to go under the knife. Also, my lung bugs are resistant to normal oral antibiotics (no idea how that happened, I have never been on a long term oral atx), so after the surgery he wants to put me on 2 weeks of midline IV's of the same stuff I was on last time (sepapine?).
Also my blood sugar was @ 129 after fasting (had a big snickers bar and dinner around 10pm the previous evening). He said not to worry, if I am starting to get CFRD it's very low, and my sinus problems could be elevating my problems. He said some CF's have come in with high blood sugar after fasting, but were sick...And after they had a clean out, their blood sugar returned to normal levels...So anyways, gonna do the sinus surgery thing I guess.
Also I asked him what my general prognosis is, and potential lifespan...He said "You will end up being a burden on social security at a very ripe old age".
One last thing: I found my old genotype info, and my mutations are:
D1507
G551D
I would LOVE to have the time to fully dive deep into those mutations to find out more about them, but alas I don't have the time at all.
A very quick search on G551D (Btw anyone else here have it?) showed this on the British Journal of Pharmacology:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/bjp/journal/v137/n4/full/0704882a.html
">http://www.nature.com/bjp/jour...n4/full/0704882a.html
</a>
"Correction of G551D-CFTR transport defect in epithelial monolayers by genistein"
I won't copy and paste the whole thing, but just a quick sectional read of the study/data, it appears that the soybean based genistein property showed strong effect in correcting the G551D defect, atleast for a period of time. I find stuff like this fascinating. I have listened to many cutting edge nutritionists recently, and many of them believe that gene expression (turning on or off certain genes, and then in turn the genes behavior) is directly influenced by diet, and substances found in certain foods.
What is genistein you ask?
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Genistein
">http://en.wikipedia.org/wiki/Genistein
</a>
The molecular function:
Molecular function
Genistein influences several targets in living cells. One important function is the inhibition of several tyrosine kinases. Genistein also inhibits the mammalian hexose transporter GLUT1 and contraction of several types of smooth muscles. Genistein can bind to CFTR receptors. This binding causes the channel to become permanently open causing "free-flow" of chloride ions through the channel.
Of course will all things, there are some reservations:
Cancer link
Some recent studies have raised the concern that genistein might potentially increase the risk of leukemia, because it can inhibit an enzyme (topoisomerase) that protects DNA from mutations[citation needed]. Some cancer patients whose chemotherapy drugs inhibited topoisomerase later developed leukemia. NCI researchers have completed animal studies on genistein with no adverse effects being seen. Clinical trials with humans are in progress.
personally, I highly doubt comparing chemotherapy and genistein could be gauged in the same way. Chemo is highly destructive and poisonous to the whole body, and i'm sure we don't yet 100% know just what all it poisons. Also, if genistein were that directly responsible for leukemia, TONS of people who eat a heavy soy diet would be coming down with leukemia...Which obviously isn't the case...As has been shown in the animal trials on the substance.
Anyways, the article I linked is an older article, back in 2002...Does anyone know or has anyone heard of anymore results from this substance for treating CF? Something like this, for atleast this particular mutation holds a ton of promise.
Anyways, just passing it along...Does anyone know if my two mutations I listed are both indeed "nonsense mutations"?
Well I got back from my CF clinic today, with mixed reviews. My PFT's were @ 101%. That's the good news, and I was clear except for my two lower lobes. The bad news is that my doc REALLY wants me to get sinus surgery...He feels most of my problems are related to my sinuses draining into my lungs, etc etc. So I finally mentally conceded to that aspect, and will be getting a CT scan and then plan to go under the knife. Also, my lung bugs are resistant to normal oral antibiotics (no idea how that happened, I have never been on a long term oral atx), so after the surgery he wants to put me on 2 weeks of midline IV's of the same stuff I was on last time (sepapine?).
Also my blood sugar was @ 129 after fasting (had a big snickers bar and dinner around 10pm the previous evening). He said not to worry, if I am starting to get CFRD it's very low, and my sinus problems could be elevating my problems. He said some CF's have come in with high blood sugar after fasting, but were sick...And after they had a clean out, their blood sugar returned to normal levels...So anyways, gonna do the sinus surgery thing I guess.
Also I asked him what my general prognosis is, and potential lifespan...He said "You will end up being a burden on social security at a very ripe old age".
One last thing: I found my old genotype info, and my mutations are:
D1507
G551D
I would LOVE to have the time to fully dive deep into those mutations to find out more about them, but alas I don't have the time at all.
A very quick search on G551D (Btw anyone else here have it?) showed this on the British Journal of Pharmacology:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nature.com/bjp/journal/v137/n4/full/0704882a.html
">http://www.nature.com/bjp/jour...n4/full/0704882a.html
</a>
"Correction of G551D-CFTR transport defect in epithelial monolayers by genistein"
I won't copy and paste the whole thing, but just a quick sectional read of the study/data, it appears that the soybean based genistein property showed strong effect in correcting the G551D defect, atleast for a period of time. I find stuff like this fascinating. I have listened to many cutting edge nutritionists recently, and many of them believe that gene expression (turning on or off certain genes, and then in turn the genes behavior) is directly influenced by diet, and substances found in certain foods.
What is genistein you ask?
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Genistein
">http://en.wikipedia.org/wiki/Genistein
</a>
The molecular function:
Molecular function
Genistein influences several targets in living cells. One important function is the inhibition of several tyrosine kinases. Genistein also inhibits the mammalian hexose transporter GLUT1 and contraction of several types of smooth muscles. Genistein can bind to CFTR receptors. This binding causes the channel to become permanently open causing "free-flow" of chloride ions through the channel.
Of course will all things, there are some reservations:
Cancer link
Some recent studies have raised the concern that genistein might potentially increase the risk of leukemia, because it can inhibit an enzyme (topoisomerase) that protects DNA from mutations[citation needed]. Some cancer patients whose chemotherapy drugs inhibited topoisomerase later developed leukemia. NCI researchers have completed animal studies on genistein with no adverse effects being seen. Clinical trials with humans are in progress.
personally, I highly doubt comparing chemotherapy and genistein could be gauged in the same way. Chemo is highly destructive and poisonous to the whole body, and i'm sure we don't yet 100% know just what all it poisons. Also, if genistein were that directly responsible for leukemia, TONS of people who eat a heavy soy diet would be coming down with leukemia...Which obviously isn't the case...As has been shown in the animal trials on the substance.
Anyways, the article I linked is an older article, back in 2002...Does anyone know or has anyone heard of anymore results from this substance for treating CF? Something like this, for atleast this particular mutation holds a ton of promise.
Anyways, just passing it along...Does anyone know if my two mutations I listed are both indeed "nonsense mutations"?