Incomudrox
New member
Post removed.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
My aquagenic wrinkling factor test results.
- Thread starter Incomudrox
- Start date
saveferris2009
New member
I'm the exact same way. When I take Kaly with high fat meals for a few days and drink green smoothies, my wrinkling sometimes doesn't happen for 10+ minutes
You are a SMART MAN! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Love that you posted this.
You are a SMART MAN! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Love that you posted this.
Incomudrox
New member
Good! Thanks a lot I figured a few people would be interested. I don't know about very smart, but I know some stuff. <img src="i/expressions/face-icon-small-wink.gif" border="0">
saveferris2009
New member
I totally agree with you, Jonathan. My problem is, I'm a weenie to try supplements. If I needed a Hail Mary because my health was really terrible, I'd go all the way with supplements. Since my health is relatively amazing, I am going down the road of more regulated, large, double-blind, clinical controlled trials. I am for sure one that wishes there would be an entity that would study more supplements in a large controlled, clinical trial fashion. I am not surprised Incomudrox is having great success....and I'm very happy for him!
saveferris2009
New member
Edited to add: when I was in the hospital in January, prior to Kaly, I was doing lots of green smoothies - and if you look at my blog, I did also have less wrinkling with the green smoothies and no other changes.
I have the amazing, incredible, God-send of a friend Mandy, aka dramamama, to thank for that.
http://noexcusesnoexcuses.blogspot.com/2012/01/aquagenic-palmar-wrinkling.html
I have the amazing, incredible, God-send of a friend Mandy, aka dramamama, to thank for that.
http://noexcusesnoexcuses.blogspot.com/2012/01/aquagenic-palmar-wrinkling.html
Yeah, I'm the same way, I have amazing health for the most part, but I have been trying some of the things Incomudrox has had success with. I have seen results similar to his, although not quite as dramatic (yet still noticeable).
I have to admit I was surprised, coming from a skeptic point of view. I will continue the things that seem to be working (not all of them did). I think it will be interesting to see how a reasonably healthy person responds to supplement treatment vs. the traditional last ditch effort group (no offense intended).
I agree with you, I would love to see more studies done.
I have to admit I was surprised, coming from a skeptic point of view. I will continue the things that seem to be working (not all of them did). I think it will be interesting to see how a reasonably healthy person responds to supplement treatment vs. the traditional last ditch effort group (no offense intended).
I agree with you, I would love to see more studies done.
C
cfsucks
Guest
i hate my wrinkly hands lol! im gonna do this test!
Incomudrox
New member
Post removed.
saveferris2009
New member
Most docs have no clue what an amazing significance this finding is. Would love to hear what your docs think, Jonathan.
FIGHT ON!
FIGHT ON!
Incomudrox
New member
I am going to be doing the same as well. However I'm pretty sure my docs understand the significance of this. They're great. I had some doubts for a little while but I think it was more because I was taking the wrong approach to things at one point. I couldn't be happier right now.
Also my appointment is in 6 days. I can hardly contain myself.
Also my appointment is in 6 days. I can hardly contain myself.
And how was the wrinkling before? My hands wrinkle like I don't know what, also curious as to how long of taking the supplements you think that you started getting this type of results, thought I guess you probably can't really recall/say exactly if it wasn't something on the forefront of your mind when you started to know to look out for it.
Frank, I'll msg you later on something I've been experiencing to get your opinion on or if you might have experienced the same. Don;t want to clutter the thread with OT
Frank, I'll msg you later on something I've been experiencing to get your opinion on or if you might have experienced the same. Don;t want to clutter the thread with OT
Incomudrox
New member
Right on, it wasn't something I was looking out for at first. I was more concerned about feeling better and I was. However if I happen to miss a dosing which is rare, I notice the wrinkling speeds up. Keep in mind the warmer the water the faster it is going to happen. The testing in the study was done in room temperature water/luke warm.
cool, I'll have to do this test myself with room temp water and see. I was just thinking from when I shower which is damn near scalding water lol
Guess the next thing that would be nice, I wonder if over time if really one of the mutaions are being corrected if that would reduce or possible totall reverse the clubbing of the digits? Maybe keep on the lookout for that, though I'd say that would take a loooonnngg time to notice with how slowly nails grow.
Guess the next thing that would be nice, I wonder if over time if really one of the mutaions are being corrected if that would reduce or possible totall reverse the clubbing of the digits? Maybe keep on the lookout for that, though I'd say that would take a loooonnngg time to notice with how slowly nails grow.
Sadly, there was a miscommunication with my clinic and I don't have an appointment on the 18th. With that said, I emailed some photos of my own AWP test that I did today along with the list of supplements I am taking. I asked if there were any other scientific markers (such as nasal PD or sweat chloride) that would confirm the efficacy of the supplements potentiation of CTFR expression. I got this response:
[my doctor] says your findings are interesting. She does not think your sweat chloride will be different, but said we can order one. If it is working your PFTs would also reflect an improvement.
I asked for a script for a PFT to be done at my local hospital, until I can finally get to clinic on July 9.
Incomudrox, I will be interested in hearing your doctor's take on this.
[my doctor] says your findings are interesting. She does not think your sweat chloride will be different, but said we can order one. If it is working your PFTs would also reflect an improvement.
I asked for a script for a PFT to be done at my local hospital, until I can finally get to clinic on July 9.
Incomudrox, I will be interested in hearing your doctor's take on this.
Gentrygirl
New member
My husband noticed the tremendous wrinkling in my son's hands at the water park and made a comment that he thinks it was related to the lack of fat in his body. In researching it, the skin on the hands has a layer of Sebum (fat) that repels water for a short time. After it is washed away, the Keratin (protein found in skin, hair and nails) starts to absorb water and wrinkles (think like one of those dehydrated sponges that fills up with water and becomes a larger size, but still has to fit in the same space). My thinking is that because CF patients do have less fat, that layer of Sebum must be far less, and the protein........we all know is an underlying issue of CF. I think you have stumbled on some info that may be important to research, if not at least notable to our caregivers. My son does not take Kalydeco or supplements, if that is helpful info or affects anyone's theories.
It has to do with the faulty CFTR and how the transportation of Chloride is defective, has to do with how the skin cells hydrates themselves which is why Cfers typically have salty tasting skin - notmal people would reabsorb more chloride than we do or something like that so allot of it get's lef behind on our skin when we sweat. Don't think it's fat related at all
P
pencf
Guest
Fascinating! My daughter has complained about this for years, and as her disease gets more pronounced, so does the wrinkling!
When I mentioned it years ago to our CF Doc (who I will say is outstanding) she didn't have much to say about it.
Please define AWH? Sorry, can't see the post if I got that wrong.
Thanks for the info. Knowledge is power!
When I mentioned it years ago to our CF Doc (who I will say is outstanding) she didn't have much to say about it.
Please define AWH? Sorry, can't see the post if I got that wrong.
Thanks for the info. Knowledge is power!
AWP= Aquagenic Wrinkling of Palms.
I agree that it doesn't have much to do with sebaceous gland production. The problem, as Mark said, is the chloride ion transport and a hypertonic cellular environment. When exposed to a hypotonic solution, water follows the concentration gradient to maintain homeostasis. You can demonstrate this by filling a lambskin condom (which is semipermeable) with salt water and placing it in a jar with regular water. The condom will swell as water moves into it to equalize the concentration and maintain homeostasis. Science FTW!
I agree that it doesn't have much to do with sebaceous gland production. The problem, as Mark said, is the chloride ion transport and a hypertonic cellular environment. When exposed to a hypotonic solution, water follows the concentration gradient to maintain homeostasis. You can demonstrate this by filling a lambskin condom (which is semipermeable) with salt water and placing it in a jar with regular water. The condom will swell as water moves into it to equalize the concentration and maintain homeostasis. Science FTW!