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#19936 - 01/29/04 05:44 AM Re: My name is Icthy82, and i have icthyosis...
Icthy82 Offline
Member

Registered: 11/30/03
Posts: 5
wow thanks for all the help everybody.

It looks like im moving down to Houston for school (will Houston's climate help me?). In the meantime im going to have to live with my condition, and just try using lac-hydrin + sea salt baths.

Recommendations on type of sea salt bath, or the recipe?

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#19937 - 02/05/04 10:36 AM Re: My name is Icthy82, and i have icthyosis...
Funky McDumpster Offline
Member

Registered: 02/05/04
Posts: 10
Loc: Bay area, CA, USA
Find a chick who's into reptiles, they dig it. Seriously, Women never had a problem with my skin, or at least they were too polite to say anything. Don't worry about it, there are plenty of other problems to deal with in relationships, skin is # 4027

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#19938 - 12/23/04 07:17 AM Re: My name is Icthy82, and i have icthyosis...
mansueslupus Offline
Junior Member

Registered: 12/23/04
Posts: 4
Loc: Atlanta, GA, USA
Yeah it does suck and I've certainly felt like a freak many times but hey, what's normal anyway? I've got the x-man version of ich, but I understand the symptoms to be pretty similar to vulgaris. My work has bounced me all around the country over the years. The only time in my life I was virtually free of symtoms was when I lived in S. Florida. I am happy to say I am heading back to Fl soon and will only leave again if I find out how to make a living in the Caribbean. Obviously I support the warm climate theory. I think the salt baths are a good idea though becuase the real benefit I have received in the past was soaking in the ocean and then soaking up rays on the beach. It seemed to be the combination of sun and salt water. Otherwise it's bottle after bottle of lac-hydrin, plus special shampoos and a scalp brush, oil laden soaps, moisterizers, cortizone drops for my ears and tear drops for my eyes. Oh, and one more approach. You were saying how the scales still didn't come off? Me neither, except that a few hours after I do the lactic acid bit, I use my fingernails and just rip the damn things off. This regimen (when I have the discipline to do the whole thing) makes me feel ok about my skin with women but it can get interesting when they first realize my bathroom holds more of this kind of stuff than their's does. :-) I always claim that at least I give a good massage because my plams are so soft from applying all the lotions to myself. :-)

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Ray
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Ray

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#19939 - 12/23/04 11:14 AM Re: My name is Icthy82, and i have icthyosis...
R Offline
Member

Registered: 02/20/03
Posts: 226
Ichy82 I understand exactly where you're coming from. I used to use Lac-Hydrin 12% and really it made the condition worse to me because it caused excess scaling all the time and would leave me feeling almost too moisturized, for example, when I applied it in the winter my skin would feel like I was fresh out of the shower the whole day and freezing my *** off or in the summer it would make me feel way too hot. Right now I'm using Eurcerin with urea. Lac-Hydrin doesn't have any urea in it and urea in combination with a smaller amount of lactic acid seems to help me more than just a large amount of lactic acid does. One thing about lactic acid is that it can build up in the muscle tissue and can cause the muscles to cease. A few times when using Lac-Hydrin in excess (I've used massive amounts to try and help before) I've had severe muscle weakness and at a few times have felt as though my whole body was made of strings. I know it sounds crazy but it has happened to me and I believe it's caused by excess lactic acid build up from the Lac Hydrin. Anyways enough ranting. Right now I'm taking omega 3 flax oil and drinking 2 liters of water a day and my skin is the best it's ever been in my life. I have absolutely no scaling on my upper torso or arms anymore and in other places it's very minimal except on my feet and ankles. Usually around this time of year I don't wan't to go out in public because of severe flaking all over my face and scalp and discoloration and flaking on my neck and just the overall discomfort of having a large amount of scales clinging to my body. You should give Omega 3 oil a shot and invest in a nice brita water filter and start drinking water all the time and see if it helps. I know it has helped a few other people with Ich V besides myself.

Best regards

[This message has been edited by R (edited December 23, 2004).]

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#19940 - 01/07/05 09:04 PM Re: My name is Icthy82, and i have icthyosis...
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I wanted to make a small comment, though many of this hits home when it comes to raising my 6 year old that has x-link. But hopefully I am raising him to be proud and to take the obsticals life has given him and face them head on. But every now and then I get him giggling because I tell him he's just like Wolverine since he heals so darn fast. I tell him I wish I could get over a cut, or sun burn as fast as he could. He wakes up and it's gone.

Good luck and enjoy all your adventures.
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#19941 - 04/19/05 08:26 PM Re: My name is Icthy82, and i have icthyosis...
Connor Offline
Member

Registered: 07/25/01
Posts: 24
Loc: Kansas City KS
Hi everyone,
I cant believe all the comments made on this topic. Sometimes I read questions on the board that seem to offer no real information at all. But everyones input on this is great even though the topic has fluctuated slightlty. I also cant believe the number of ppl with x-link, i was thinkin it was just me and les. Firstly, in response to charmed, I too have noticed my fast healing rate, everyone comments on it, and i too felt like wolverine after watching x-men. I just thought it was me but could be something to do with x-linked, would be strange to know why though. I think its great that i heal so quick, i often joke at my dad and mates when they take so long to heal, I work security on the evenings at a night club and when fights break out im usually back 2days later completely normal. Secondly i would like to add a few points about the creams and lotions ppl use. I have noticed that it is important to use certain creams on different severities of your skin scaliness/dryness. For example, Am-lactin works great on my forearms and legs where scaling occurs, however, my stomach has always been smooth and clear with normal moisturisers. When i used amlactin on it though it started to get dry. So it seems important to give the certain areas of your body what it needs. Scaled areas need urea or lactic acid, but "normal" skin which may just get dry only need moisturisers such as vaseline intensive care, E45 etc. I have also started using the glycerin/water lotion on my body after a bath and i felt like how i do in summer when i sweat all the time. I felt warm and 'closed in' and was so comfortable I went straight to sleep. Dont use it abundantly on your face though as that felt greasy and was too hot. Thirdly, I would like to ask some ppls input on the comment made about the use of lactic acid affecting the muscles. I've been an avid body builder for 5 yrs now, dont do steroids e.t.c as i just want a strong, good natural physique, but i have noticed over the last year that my muscle size has decreased and i have been gettin shaky. I have also found it harder to lift the same weights in a way ive never felt b4. Anyway i'll end this here as anyone with small attention span will be gettin bored now. Great posts by the way everyone.

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