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Dr Goldstein Lecture

Posted , 14 users are following.

kellie42169
kellie42169

How long does it usually take for a moderator to check a link to a website over ? Just trying to make those that are unaware about his webinar.

Original post is below with link:

For those of you who haven't heard about this or seen just making you aware.

http://www.lichensclerosustreatment.com/

The webiner is 1hr 20 minutes long so grab a coffee, I'm just in the process of watching it so can't comment as of yet, but I've heard it's very informative.

I hope it helps

3 likes, 51 replies

51 Replies

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  • Morrell1951
    Morrell1951 kellie42169

    Posted

    OMG! He actually names exactly what I had when I went in and finally got diagnosed. A 'smegmatic pseudocyst abscess'. onder the fused hood of the clitoris. I love this doctor!
    • suzanne00
      suzanne00 Morrell1951

      Posted

      Yes, I was hoping you would see this since you described this to us.  This problem is apparently very common.  sad  I'm glad that he outlined this for all of us.  --Suzanne
  • Morrell1951
    Morrell1951 kellie42169

    Posted

    Wow, I love this guy. So deeply knowledgeable and experienced. A complete change in my thinking even though he's not talking about any treatment other than the ultra potent corticosteroids we're all prescribed. He's pretty harsh about the 'poor science' in the Italian study (I think only 27 patients and no double-blind). I posted a new discussion just to cover his (new to me!) instructions on how to use the ointment (and says don't get the cream, get the ointment!)
    • sha1271
      sha1271 Morrell1951

      Posted

      yes, Im sure I have used it wrong all these years.  I dont even recall how long I used it at first.  Knew to rub it in but not for 90 seconds or to soak in water for 20,  I just always apply after a shower.
    • Morrell1951
      Morrell1951 sha1271

      Posted

      I don't feel too awful. In this year of treatment it has improved and not progressed. I don't have huge thick scars like some of the pictures. I do have 'clitoral phemosis', but I've written that off. But I'm happy to start having soaks again in my very nice, deep tub.

      Dr. G. is very firm about being consistent with treatment, to prevent cancer. He says 'most' (60%) of vulvar carcinoma arises from LS. BUT, of his 1200 patients he should (statstically) have dozens with cancer, he's only got one and she left for three years and stopped treatment.

    • sha1271
      sha1271 Morrell1951

      Posted

      I do still have quite a bit of white area and Im sure its because of not thouroughy rubbing in.  I do feel fortunate that my fusing was minimal.
    • Morrell1951
      Morrell1951 sha1271

      Posted

      Then you'll probably be good as new after treating it properly for awhile. Glad to hear you haven't fused!
  • marey
    marey kellie42169

    Posted

    hello kelie

    well its 7am the next day...i did find the site...THANK YOU KELLIE!!!!!!!!!!!!!

    I started to watch it immed.....BUT .....got packed off to bed by my daughter!! Got to be responsible she said.....eeeeee

    so i only caught the start....but it was great so far.....i prob won't agree with the recommendations but i shall inform myself! Has he actually cured anyone? well i'll find out!

    you are a star kell !!!!!!

    morrell i thought of you when he mentioned an abscess under the hood....and given you have experienced the condition both pre-pubescent and post menopause...but had remissions during your fertile  adult life...you're a classic!! we'll all get behind you if you were to go forward as a guinea pig. ...anyway i'll fini watching later....glad you saw it too sha....can't wait for us all to have watched it and to be able to catch up here with kellie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

    • kellie42169
      kellie42169 marey

      Posted

      Your all very welcome

      I only know about his lecture as he posted it in our facebook group.

      I agree with you Marey in that he hasn't cured anybody only treated them, I think the curing part is down to us. He does mention gluten so I agree with you that diet plays a part in LS but doesn't cause it. Wouldn't it be great if we all had the genome testing ? 

    • suzanne00
      suzanne00 kellie42169

      Posted

      Right!  Gluten is just one of many issues that can make the gut leaky and cause an autoimmune reactivity to particles of food that don't belong in the bloodstream.  I have Celiac disease (with genetic predisposition), and he also mentioned the genes HLA 2, etc. which are associated with many autoimmune diseases, including celiac. 40% of the entire population carry those genes but not everyone manifests autoimmunity, so diet (including gluten, but possibly other inflammatory foods) would likely be one epigenetic switch that would activate that gene.  This is a facinating area of research right now.  --Suzanne
    • kellie42169
      kellie42169 suzanne00

      Posted

      I too have cut out gluten and dairy for 6 weeks with hardly any itching, I'm obviously still eating something that makes me itch probably the chocolate I eat to often wink I've always thought this was an autoimmune disease which is why i'm trying to heal a leaky gut too. Now we just need some billionaire to fund the research so we can all be cured, anyone good at pitching smile
    • Morrell1951
      Morrell1951 marey

      Posted

      Thanks, Marey, but I'm nowhere near Dr. G in Washington DC and I'd be excluded from the test group because I have psoriasis.

      I feel good about the drug, empowered by his thorough instructions on its use, and confident I can prevent cancer. I no more think I can 'cure' it than I think I could help my mother 'cure' her rheumatoid arthritis and reverse all the joint damage. The science in Dr. G.'s presentation is just clear enough for me to know it's beyond my ability to figure out causes or jump to the conclusion I can make it go away. He mentioned gluten in relation to celiac disease, which will make my friend happy, the one who hasn't been diagnosed for twenty years.

  • Emis_Moderator
    Emis_Moderator kellie42169

    Posted

    Hi all,

    If a link is posted out of hours (UK time) it will be checked the next day. It may take longer over weekends as I don't always get a chance to check the site at weekends.

    I have added the original post with the link to the initial discussion here rather than approve the other discussion.

    Alan

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