Break throughs and Questions :)

Posted by: CowgirlGina

Break throughs and Questions :) - 04/27/07 02:56 AM

Hey everyone, I am 14 and I have Lamellar Icthyosis...I know nobody else that has it haha...I don't know if you guys knew this (you probably do) but, I found that the few times my skin had no scales was after I went swimming! Swimming, especially in chlorinated water, really helps to clear up the skin. Especially if you get out and scrub down in the shower then put some lotion on... Do you all use lactic acid based lotion? I was just curious...Because I do...Does anyone have any other ways to get totally rid of scale in a matter of days? Just thought I would share it with ya. [img][/img]


Gina Messer
Posted by: Beth Engerman

Re: Break throughs and Questions :) - 04/27/07 02:55 PM

Hi Gina! I joined the swim team when I was in high school b/c swimming helped my skin so much. I did the same that you did with a shower and a really good scrub as soon as get out of the pool. I also use a latic acid based lotion. It gets mixed in with a cream called Velvachol with 8-10% lactic acid depending on the time of year and how bad my skin is. I use Tazorac too. I put it on once a week and in 3 days all of my scales will be almost gone. It takes a little more time for my legs to get cleared up but as long as I keep up with it my skin looks great!

By the way I have lamellar too.

"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela
Posted by: Chandra

Re: Break throughs and Questions :) - 05/24/07 05:56 PM

Up until my late teens, chlorinated water did help remove scaling. Then it had the reverse effect and made me more dry. Go figure. I suspect it's due to hormonal changes, metabolic changes, etc but I'm not sure. Until it stops being an improvement, I'd be spending as much time in the pool as I could if I were you!
Posted by: Chelle

Re: Break throughs and Questions :) - 07/16/07 09:34 PM

I find that any soaking in water combined with really good scrub helps remove the scaling, but you definitely need to follow it up with a good cream. The lotion I used when I was younger really didn't trap the moisture in very well, so swimming and such just made me quite dry after the water all evaporated. I have a better cream now (NeoStrata PDS cream), and I have long soak baths about once a month to help with the scaling now.
Posted by: nigerfamine

Re: Break throughs and Questions :) - 05/10/08 06:50 PM

Try Black Seed oil by iman products.
Its cheap it works and is recommended by prophets, and scientists.
An article by Hans Wagner
Recently scientists around the world have confirmed the anti-bacterial and anti-mycotic effects of black seed oil. Health practitioners in various countries around the world are using the oil against inflamation of all sorts as well as fungi infections. Even a remarkable reduction of blood sugar levels has been found by scientists. Black Seed extracts have been found help tostimulate bone marrow and immune cells, so writes the scientists of the Cancer Immuno-Biology Laboratory and adding that it raises the interferon production, protects normal cells against cell destroying effects of viruses, destroys tumour cells and raises the number of anti-bodies producing B cells.
All these functions make the Black Seed oil the ideal candidate for the prevention and treatment of cancer. Scientists are now busy finding the effects of the Black Seed oil in regard to various other human health conditions. Dr.Med.Peter Schleicher, an immunologist, in Munich who in 1986 happened to be nominated the youngest member of the World Academy of Scientists, examined black seed oil in his institute to find new therapies for chronic illness and its effect. His findings are identical to those in previous studies by earlier researchers. Schleicher says, by using Black Seed oil, valuable unsaturated fatty acids, for example Linoleic and Gammalinolen acids, get into the organism. By that it is possible to reach a synthesis of important immune regulating substances derived from Prostaglandin E1. Linoleic acid stabilizes the cell membranes and Prostaglandin has the effect of inhibiting inflamation. By that the immune reactions are stopped which cause the illnesses and which otherwise could be the start of many many chronic illnesses like acne and hayfever right up to cancer. In addition, the excessive T-cell function of the person suffering from allergies are stabilized through the substance in black seed oil and the abnormally rising immune reactions through supressed anti-bodies. The excessive immune system is normalized and the large cell degranulation decreased.

Studies also testify that an immune system which has gone wrong can again be regulated by the strong effect of the oil. Schleicher, meanwhile, has tested the effect of the oil on 600 patients. As a result he confirms the cure for allergies at about 70% of the patients. Amongst them are allergies against pollen and dust, acne and neuro-dermatological illnesses, asthma patients, etc.. who generally have a weak resistence and are prone to suffer from infections. For that reason Dr.Schleicher in Munich is going to include the oil with his preventative treatment against colds and influenza.
In the Middle East and South Asia, this oil has been used for thousands of years as a remedy for all sorts of allergies, inflamation and menstruation problems, boosting moral, depression; but especially against bronchitis, asthma and neuro-dermatitis as well as poor digestion and even impotency. The Prophet Mohammad (s) stated in his "Hadith" that black seed oil cures every illness except death. No wander then that a little bottle of the oil was even found in the tomb of the legedary Pharoah Tutankhamen..!
In the West the effect of the oil has been used for a long time against wind, dysentry, stomach and lungdisease, jaundice, diuretic problems and to increase nursing mother's milk. Due to the triumphant advancesin chemistry the oil has been forgotten until recently. According to Dr. Schleicher the reason why this oil is so exceptional is that its component parts act in unison to produce an optimum effect for so many complaints. But one has to make sure that only the pure and tested oil is being used.
Schleicher's colleagues have reacted very positively after the publication about his success with patients who haveused the oil. Professor G. Rietmuller, Director of Institute for immunology at the University of Munich believes that this plant extract works positively on the immune system and could be used as a bio-regulator. Professor Michael Meurer of the Dermatology Clinic in Munich has for a long time been convinced about the success of this oil. From his experience the oil help stop inflamation and helps with neurodermitis.
At the International Cancer Congress in New Delhi last Autumn the anti-tumour effect of black cumin oil has been introduced to many scientists and doctors.
Translated from an article by Hans Wagner.

Taken from:
Posted by: TMPOL_dup1

Re: Break throughs and Questions :) - 05/11/08 03:43 AM

My son has LI and there is no cure - or "Miracle Black Seed Oil" Iman is a celebrity (David Bowie's wife) but this is an "iman" product. This sales tactic is sleezy......
buyer beware!

Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
Posted by: LiLpinkEyE

Re: Break throughs and Questions :) - 05/22/08 11:33 PM

Hi everybody,

I'm a 20th year old girl from belgium with lamelar ichthyosis and my doctor has found a "solution" for my problem. It's a medecine called "neotigason"; it has several degrees you can choose from (depends on how sensitive you are)and i must say i couldn't live without it now. I've been taking this medecine sinds i was 12 and my skin looks pretty normal (i can even were tops or a bathing suite without everyone staring at me!). I still have to put on some cream every day (i use xérialine) but not like in the past. I can also sweat like a normal person now, warmth doesn't bother me anymore and my skin has a normal colour no matter what. The only problem with this medecine is that you can't get pregnant during and 2years after you use the pills. I was pretty depressed when i was little and i have to say, this medecine has saved my life.