IMPORTANT : Letter to and from National CFS, Regarding Toxin found UPDATE

Discussion in 'Fibromyalgia Main Forum' started by AmyKaiser, Jul 8, 2003.

  1. AmyKaiser

    AmyKaiser New Member

    NCF,

    Hello fellow CFS sufferers and supporters,
    Several months ago i spoke with Gail Kinsky....
    Gail you are one magnificient lady!! our 30 minute conversation literally changed my life...even me being a 20 year suffer, and a constant lone researcher with absolutely no moral support from family or otherwise, your information filled in a few gaps in my knowledge that was extremely helpful!
    Originally i called your organisation to find the new location of Dr Cheney and when somewhere in the conversation Gail mentioned the word "cure" u can imagine my shock...
    "CURE...excuse me?"
    i mean we all know that word has NEVER been used for, on or about this disease...let alone admit by any people other than sufferers its a real disease...
    WOWOW i cant express my strong emotions Gail and NCF volunteers..
    i am getting tears in my eyes as i write this...
    it makes so much damn sense i tell you...a toxin affecting all parts of the body...
    i really knew there wasnt a core issue as far as a starting organ that could catapoult such a massive array of problems..
    allergies, asthma, loss of memory, loss of cognitive ability, dizziness, vertigo, inability to stand for over a few minutes, inability to drive freeways due to information input, shortness of breath, confusion, mood swings, gagging, vomiting, intestinal spasms..and the list goes on...
    no small amount of complaints when it renders a person bed bound or useless...
    the last straw is now the female hormone issue as i cant get out of bed during my period etc...
    damn that HP axis i always knew it was so related to hormones, adrenals, and the like...
    even if the doctors dont believe me because ITS NOT STANDARD western medicine to see it on paper...
    GOD things need to change...
    anyways... i was on the other hand so devistated to learn of Dr Goldsteins retirement...
    i had planned on a trip from my state of michigan to see him personally for i knew his ideology was my key to a somewhat more useful and fullfiling life TILL this cure is found or isolated..
    oh damn be the luck...
    so i suppose what i am asking is this...
    DO you, or do you KNOW of some of the top doctors i can visit and get some help from so i dont spend my life with these home state doctors who dont get it one bit...
    i will fly..travel..i dont care...
    i just want some normalicy..anyting they can give me till we see where the Cigua toxin goes....
    Andrew Connely in michigan wont see new patients...
    i do truly believe i have some brain issues i am worried about...
    and given its such a specialised illness i dont want to just look up a neurologist or brain expert...

    i am looking for a neurologist...anywhere in the US...the best of the best...
    i dont mind being experiemented on either..LOL
    anything for the cause..
    i am looking for a good brain doctor...
    someone who performs NAET....Dr Berg?
    i believe i have sublinical thyroid issues the endocronologist here wont address...
    i know my estrogen levels ..estrodine i think its called are sub par and i am wondering about ovarian demise at the mear age of 35
    etc etc

    One other issue i have..i have gone out of my way to spread the word of Cigua toxin and tell about your organisation..
    when having shown your complimentary newsletter Gail sent me, it had information on how to draw blood for testing that is sent to Hawaii...
    well i called all over and noone will do this and ship it etc...

    how can i do this...i do so very much want to know if i have, and how badly, this toxin in my system..
    not only that, sure gives a great case for my disability evaluation doesnt it..wink wink...

    any info on that as well....?

    one more thing to address...being that i reside in michigan, is there any way or anything i can do to volunteer or be of help/assistance to the National Chronic Fatigue Organisation?
    i would love to make an impact for the better in this disease and or ackommplish something for the betterment of mankind in my lifetime...this sure seems a good way to do it and i have the passion in this case...

    Id love another copy of your newsletter and i think will need to apply...
    i am on dissability, but not sure if i qualify in thus parameters for non fee membership...
    but even given that, id like to donate the aforementioned fee amount for myself, and in honor of my father who passed away a year ago july 4th...

    iwith much appreciation and enthusiasm,
    Amy

    Reply from Gail Kinsky, President of NCF as follows:

    Amy,

    If you can wait until the fall, it would be better since there will be a lot more information by then that is necessary for any physician to properly treat you. Right now, they're going to only be able to try and treat parts of a problem (like the adrenals, the hormones, etc.) that are really all part of one major problem that we think may be identified by the fall. I think my daughter is already experiencing what you may by...early menopause...but you can test for that and get hormone replacements. The best physician will not be a neurolgist or a CFIDS expert if we're right which is why it may be far better to wait.

    David Berg is not an MD and his testing for heparin, while an advancement, is not resolving the problem for those who, on his suggestion, go on heparin. In fact, this seems to shut down the heparin that is naturally in your body compounding a problem. It is much like what happens to a lot who are on therapies they believe are helping them. In the long run, they may be doing themselves more harm than good.

    I know how desparate you feel, but I've already gone the route of bringing my daughter (I'm a milder case) to so many "experts" and nothing has been helping in the long-term and she gets progressively worse. Now we think we may know why and will be working on answers as well.

    Amy, I assume you got the spring issue of the newsletter. I'll have the summer issue sent out to you tomorrow. If you can afford the $30. membership, you can send it in in memory of your father and it will listed in the fall edition. A portion of it goes directly to research. But if you can't, we understand.

    Right now, the researchers are finding out exactly what the toxin is that they're finding. They know it can't be actual ciguatera as there isn't enough of that occurring naturally in the world to affect so many people. But it's going to be close to it and probably present much the same problems. We know it uses the same pathway already.

    You need a physician's script for the blood test...which only has to state, on a precription, "test for ciguatera." Then you take that to any laboratory (we've found labs in hospitals, for some reason, much more willing to do this) and they'll read the protocol you provide and then give you the vial. You must package it (bubble wrap, etc.) and FedEx it out priority (FedEx has a diagnostic envelope for this). If you're not near a FedEx office, they'll pick it up.

    I remember Dr. Conelly from years back...he had a family member with this. I wouldn't be at all surprised to find he has this as well. But even he can't help until the actual cause is found and addressed. Patients have been symptomatically treated by the very best for years and it hasn't gotten them too far! We're not dealing with a simple illness.

    Hold on! We are determined to get there and the researchers are already hard at work!

    Best,
    Gail
    [This Message was Edited on 07/09/2003]
    [This Message was Edited on 07/09/2003]
  2. AmyKaiser

    AmyKaiser New Member

  3. sofy

    sofy New Member

    Excuse my fog but is she saying that by fall2003 they think they will have identified the toxin that has taken up residency in so many of us and know how and what to treat it with? I can wait for that!!!! Keep us posted
  4. Plantscaper

    Plantscaper New Member

    But, which national CFS group is she with? or are there any words that can get us to a website that might indicate this, as well?
  5. AmyKaiser

    AmyKaiser New Member

    Sofy, yes she is saying they have isolated the toxin...
    its not ciguatera but its very similar...
    she had told me months ago they believe within a year they would know exactly what it is and how its replicating in our bodies...seems that the NCF and scientists are still sticking to the schedule per her saying wait till the fall...
    and Gail Kinsky is the president of the National Chronic fatigue organisation...
    do a search for it and they have some of the articles from their newsletter on their site too as well as the press release when they discovered the toxin late last year...
    FYI the NCF is the organisation that is FUNDING and did the push for this research...
    so i trust them before many others..
    Amy
  6. AmyKaiser

    AmyKaiser New Member

    thats too funny because i was invited to San Diego...
    thats on a personal note of course ;)
    but i was waiting till after the hotter months...
    well u can always write or call gail about the Herparin...
    if she has negative views, then they are ones probably backed by Cheney and other notable doctors for Goldstein and others are on their medical advisory board..
    i am being tested for coagulation soon so id be interested in knowing why she felt that way etc...

    how can i get my email addy to you jelly?
    leave it on here?
    Amy