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Lichen planopilaris

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The time now is Fri Nov 20, 2009 11:48 pm. All times are GMT
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Lichen planopilaris
Author: ellendxyz  Novice Poster
Post Mon Nov 09, 2009 9:24 pm 
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I have an idea and would like your help

Hello all. You may have read my posts before. I'm Ellen and I've been working with my acupuncturist using 7 star needles and chinese herbs with a good deal of success. Even so, it hasn't stopped me from looking for more help. I have a theory and I'd like your help in trying to see if I'm right. The upside is that it's non invasive and at worst it will help your overall health. At best, who knows, perhaps an answer. I've spoken with a number of LPP sufferers and the common thread I've heard is that we all seem to be chronically dehydrated, long term. It's certainly true for me. My theory is that because this often comes after menopause and that menopause causes your body to overheat that the delicate balance of hydration (or lack of it) that is barely adequate during normal times causes an intolerable situation. Now now no one knows if this is viral, bacterial, auto immune or what, exactly, but they do know that heat makes it worse. Dehydration makes it worse. Spicey foods that cause heat can make it worse. Emotional stress that causes us to heat up, makes it worse. I propose that we try to put this fire out in the most obvious way. So far, I've been trying to drink 10 or 11 8oz glasses a day. For me, this has been a very difficult thing to do. It takes a lot of concentration and I've enlisted the help of friends and family to remind me. I saw a decrease of shedding and itching within days. I dropped back down to my normal 0 to 4 glasses one day and I immediately saw an increase in symptoms. Went right back up to 10 and had relief. I'll admit here that I also am very careful with my diet. I don't eat spicey foods and I have very little animal fat in my diet.

So what I'm asking is if some of you would like to join me in attempting this simple possibility. Can we put the fire out?! You would have to make it a priority to tell if it were working. Are you game? Everyone out there willing to flood their bodies with chemicals and their side effects. Are you game? To you all who say your desperate for an answer will you join me in this attempt? Please let me know, first of all, if chronic dehydration has been a problem for you. Let's see what the common thread is. There just isn't going to be a silver bullet here. We have to do the research ourselves. Let's just try to find out if this could be a common problem. Ellen

Author: ETTA  New Poster
Post Mon Nov 16, 2009 8:29 pm 
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Hair piece and other things

A quick summary of my situation. My first time with Lichen Planopilaris was in 2002....it lasted 1 year. Fast forward to 2009 and it is back. The first time I used topical treatments and I experience minimal hair loss...mostly near my ears and back of my head. Currently, I'm doing cortisone, topical treatments, and Plaquinal (sp). I have greater head loss and it is on the top of my head so it is becoming harder to hide.

I've had two meltdowns and so I decided to get a hair piece. Yes, human hair is expensive...especially virgin Russian hair. The hair salon I went to told me they run between 1800-3200. Yikes!!

I couldn't take the meltdowns so I ordered a transitional hair piece hand made with clips and using virgin Russian hair.....$2,200.

I am now going to this new local hair loss salon for cuts, coloring, etc. Not happy, but a least I feel in control.

ETTA

Author: Lark  Novice Poster
Post Tue Nov 17, 2009 5:54 am 
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Re: Hair piece and other things

quote:
Originally posted by ETTAA quick summary of my situation. My first time with Lichen Planopilaris was in 2002....it lasted 1 year. Fast forward to 2009 and it is back. The first time I used topical treatments and I experience minimal hair loss...mostly near my ears and back of my head. Currently, I'm doing cortisone, topical treatments, and Plaquinal (sp). I have greater head loss and it is on the top of my head so it is becoming harder to hide.

I've had two meltdowns and so I decided to get a hair piece. Yes, human hair is expensive...especially virgin Russian hair. The hair salon I went to told me they run between 1800-3200. Yikes!!

I couldn't take the meltdowns so I ordered a transitional hair piece hand made with clips and using virgin Russian hair.....$2,200.

I am now going to this new local hair loss salon for cuts, coloring, etc. Not happy, but a least I feel in control.

ETTA



Etta.....I have had many melt downs to the point of hysteria. Can you tell me more about the transitional hair piece. I got a clip on hair piece and my hair wouldn't hold it in...so that is out. I want to go to a good place.....not a "wig shop" but I don't know where to start. I have never heard of virgin Russian hair.

Thanks...Lark

Author: ETTA  New Poster
Post Tue Nov 17, 2009 3:52 pm 
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Hair piece

I am new at this too. I ordered my custom hair piece 2 weeks ago. It will take 6 weeks to be made, so I expect to have it for the Holidays.

A transitional hair piece is basically something that fits on the top of your head. It has 4 clips that clip into your hair, but what it also has is several rectangular holes (about 3/4 inch long & 1/2 in wide that you pull your own existing hair through to blend with the hair piece. I chose the transitional piece rather than a partial prostheses because I still have a hairline and it seemed lighter....just felt more comfortable about wearing it. I have short hair so it shouldn't be hard to pull my real hair through the holes. If you have long hair it might be a problem.

Human hair is suppose to be the best for looking the most natural. From what I have researched there are several different types of human hair (Asian, Indian, European). Typically Asian and Indian hair is processes (I am not sure why) and non processed European hair is considered the best. Most European hair comes from Russia. It is more maintenance than "cyber" hair. I was told if you do not wear it 24/7 (take it off at bedtime) and are very careful with it you might get 2-3 years out of the piece. Altogether an expensive investment. I was told I should buy a "cyber" piece to use for swimming, riding in a convertible, exercising, etc. I will take one step at a time.

I did not go to a "wig store", I found a local hair salon that specializes in hair loss. They do "custom" wigs/pieces, "out of the box" wigs, and laser light procedures, etc.

Etta


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