.GOASKALICE...........Update on ..11/5/05 conference in Eatontown

Discussion in 'Fibromyalgia Main Forum' started by cph13, Nov 3, 2005.

  1. cph13

    cph13 Member

    Registration can be at the door. $30.00 starts at 12:00

    So if you haven't sent your registration in that's OK.

    Hope to see U there.
    CPH
    [This Message was Edited on 11/08/2005]
    [This Message was Edited on 11/08/2005]
  2. swamper

    swamper New Member

    Hi! If you decide to go to the conference, please post your reflections....I am very interested in Shannon McQuown's (sp?) story about dealing with the schools and her son'...since I live on the West Coast, it was too cost prohibitive to attend, but I sure would love to!!! Thanks ahead of time for any information you bring back should you decide to go!
  3. cph13

    cph13 Member

    Dr. Chaney was VERY technical and spoke for a long time. Shannon also spoke in length on the trials of having a child with CFIDS and made suggestion upon suggestion on how to cope with the education system. Unfortunately, after the drive and Chaney I took few notes during her session, I was brain dead. Shannon is willing to help anyone who has a child with cfids address the educational system. She went into sample letters from dr's to the schools, sample letter from the parent to the schools. I do believe she has a website and will help through an e-mail which I unfortunately did not get but her website I am sure has it.

    The whole thing was overwhelming and I was on overload. I couldn't get to transcribe my notes yet. I feel it was more directed towards the medical field than to us patients but it was worthwhile.

    As for Chaney what I got was the brain doesn't get enough oxygen. Depression is the defense mechanizm the brain takes to protect itself. His protocol as we all have read is:
    Klonepin, doxypine, neurontin, B12 in High doses along with injections of Magnesuim 2cc with taurine along with I guess a form of lidocane to make the injection less painful. The magnesium is a biggie. He had found giving just 2mg sublingually produced results that lasted 10 minutes thus increasing the magnesium to much higher levels would give longer lasting effects for pain. Naturally the protocols must be altered case by case. He mentioned the use of hawthorne relative to the heart which produces or increases (fog time) SOD Super Oxide Dismutase. He recently had some findings and is excited about Neem's use and a catylase inducer which is made of pig liver. The game plan is to produce Super Oxide dismutase aka SOD with the Hawthorne.
    As you can tell I'm very much out of sequence here trying to look at my notes and provide what I can.

    As for Dr.'s locally (the metropolitan area) He mentioned Dr. Shungu working out of Weil Cornell, Dr. Sanjay, Matthew out of Mt. Sinai and a Dr. Andrew Miller from?????????? All of these dr's are working on different segments to our problmes i.e. Dr. Sanjay is doing MRS Manetic Resonance Spectroscopy which is NOT an MRI but is a brain imaging study for neurochemical differences and provides evidence for Brain metabolism.

    As U can read it was a lot of information, very technical but worth going to. Now I have a head start when I see a doctor who is knowledgeable with these advanced protocols. I still have to research who would best suit my needs. I was decided on Levine but with the new names I will do some research on them. I feel my problems are more cognitive and energy related. The pain I can always pop a pill for but how does one get the desire to do something and remember what it is she was suppose to do. LOL, nay it's just not funny anymore.

    Hope this helps. Nothing is tremendously new. A study wss done comparing CFIDS & GAD patients there is a correlation with high NAA and glutamate in the CFIDS patients and not the GAD patients. That I have to find more about.

    I DO KNOW THIS FOR THOSE THAT ARE ON ANTI-DEPRESSANTS my first real doctor told me NEVer take psychotropic drugs for your fibro.......just the klonepin for sleep at nite and regulated by a lower dose during the day. It has worked well at nite but I just don't like taking it during the day. After what I heard I will try to regulate my daytime dose once again.

    Sorry this was so long.
    Happy, Sunny, pain free days to all
    cph
  4. cph13

    cph13 Member

    of his discussion so I fogged out believe it was in trial stages but you may want to search his site. that wasn't even 1/16th of what he covered. Much of it was way over my head. I've kinda just got back to my problems. I stopped all contact with the fibro world since 2000. I fell on this site just being bored which got me going to give care to me now.
    If I remember more I will post. I have to sit a friends house tomorrow and maybe deal with my notes. Believe or not I use neem on my plants to kill parasites been doing it for years and it works wonders. Could be killing off things and leaving U open to germs but that's OK eventually it will all work out. I posted somewhere about mycelex for a cold which is just quaifenisen I am taking that along with amoxicillian for my cold and some cough syrup. Mycelex is over the counter costing about 11.00 at a pharmacist that delivers try it It's working great.
    Love
    cph
  5. cph13

    cph13 Member

    Keep us abreast of your results OK

    cph
  6. ephemera

    ephemera New Member

    Thank you so much for slogging through your notes for those of us not in attendance. Such a gift to the rest of us.

    best thoughts.
  7. goaska29

    goaska29 New Member

    I unfortunately was way too sick this weekend to make the drive from Washington to Jersey. Thank you for all the information. I also wanted to go to meet some other people with our illness in person...not that I dislike talking online, I just enjoy meeting people in person. Oh well, maybe there will be another one closer.

    Thanks again,
    GoAskAlice
  8. tonysmom

    tonysmom New Member

    Hi Everyone,

    My contact information is in the packet that came with the presentation on the page before the last.

    For anyone who couldn't attend, the web site is called YPWC Parent/Teacher Bridge Builder. My contact information is quite public. shmcqchildofgod@msn.com

    If I can be of any help, don't hesitate to contact me.

    Anthony's mom a.k.a. Shanon
    [This Message was Edited on 11/09/2005]
  9. ephemera

    ephemera New Member

    Does anyone know if the meeting was either audio or video taped for sale later?
  10. cph13

    cph13 Member

    I imagine so there was a videographer taping the entire seminar. Check the site U should be aboe to ask that question on the site that made the announcement
    cph
  11. tonysmom

    tonysmom New Member

    Thanks Stin. We're really not that much different from anybody else. I hope you enjoy the book.

    They did tape the conference and they are making DVDs.

    Be blessed!

    Anthony's mom a.k.a. Shanon