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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

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    There is so much info out there about Celiac and it's all conflicting. I just read that the gene test is a huge marker in diagnosis. Then I read if you have low IgA and a positive blood work saying you have or are making antiboidies to gluten, you have it. That's what I have along with a stool test. But, the absolute GOLD standard on diagnosis is the biopsy where they can see if the villa are no longer existent. BUT, even that is not the gold standard, which I found out from the Celiac support group. I was told that if I had the biopsy, I would need to eat 6 pieces of bread everyday for 3 months in order to do the biopsy. I opted against it. So, I am gluten free. Completely, but it's only been a few weeks. The biggest thing I have noted is that I am not reacting to EVERYTHING anymore. Thank God. Because I am consistently coming back with blood work that says I have Celiac, I am going with that. What's the harm in just avoiding gluten...it will only benefit me because clearly something is up if I eat it and then run to the bathroom and itch for 2 days.

    Celiac runs in my family.
     
    taniaaust1, xchocoholic and MeSci like this.
  2. Misfit Toy

    Misfit Toy Senior Member

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    On being cured. I have 2 friends that were cured. BUT, I wonder if they ever really had it. One lived in DC and was exposed to massive chemical exposure due to lawn care. He became so sick. But, he is totally fine now. He got well in like 2 years. So, is that CFS or just chemical poisoning because there isa difference.

    Another friend had exposure to chemicals at work. Everyone was exposed. Many got sick. He is also now well.

    They are working full time and have never had a relapse. IT's been years now of wellness for both of them. Both diagnosed with CFS. Both chemically poisoned. To me, that's chemical poisoning; not CFS. It just validates my feeling that many are given this diagnosis when they really just had something else....like exposure to toxins. The one never had any type of viral component.

    Both were male. I have seen men recover. I have seen them recover more than women.

    The one is still working full time and receiving SSDI. Pisses me off. He is totally bucking the system when others could really use it. He is living in a fully paid $400,000 home in Queens and collecting SSDI and working under the table, full time. Not right.
     
  3. xks201

    xks201 Senior Member

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    I'm cured. The cause of my CFS was panhypopituitarism and dairy allergy undiagnosed.
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Even the biopsy is not perfect. You can get false-negatives if they take them from a part of your intestine that is not affected, hence the need to repeat biopsies in some cases.

    It is also finally being acknowledged, as patients have claimed for a long time, that one can be seriously sensitive to gluten without being coeliac. I started a thread on this here.
     
    Misfit Toy likes this.
  5. Ian

    Ian Senior Member

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    2 years ago I was so sick I thought I was going to die. Now I am normal, so recovery is possible.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    everyone wants to know how though and what types of abnormalities found in testing such as infection/immune dysfunctions, hormonal etc.

    cheers!!!
     
  7. taniaaust1

    taniaaust1

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    Hi :)

    Would you mind sharing with us more details of your case as everyone is now very interested.
    What defination of ME/CFS did you fit under? What abnormalities on tests did show up? Why do you think you recovered?

    thanks
    ps.. take great care if you've recovered from ME as I believe then you still would be very suspectable of maybe getting all the symptoms back with another ME trigger.

    edit .oh sorry. I just realised who I'd just responded to (brain daze) and do remember how you recovered. My other questions thou I'm still quite interested in, did you fit the ME international defintion or the CCC one? and did you have any ME abnormalities showing on your tests?
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I certainly do! 'How' is my main question.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Something else i think worth mentioning or asking, is have many recovered for 5 years or more? I think 5 years is a number used in cancer patients without a relapse before they say they have gone from remission to recovered?? I think its important to know what subset one is too??

    Antiviral/herpes subsets seem to maintain a level of improvement while remaining on antiviral treatments and fewer antiviral treatment free greater then 5 years, but be good to hear from more??
     
  10. Ian

    Ian Senior Member

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    I don't know what exact definition I fitted under. I was diagnosed with CFS after being ill for 2 or so years, after repeated blood tests failed to show anything was wrong.
     
    anna8 likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    MeSci, exactly. That's why I am just gluten free at this point. I am being meticulous about it. The hardest part is lunch. If I am out during the day and need a bite to eat, I literally starve because I can't go to any place that is inexpensive. It's all junk food with gluten. I am trying to get used to this. But giving up gluten and milk is making a difference even though I am still quite ill. : ( I still have a rash. I am still tired. But....it's been a few weeks and there are so many other things going on to, including allergies to ragweed that have kicked in.
     
  12. Dster

    Dster

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    A colleague of mine has indeed been cured of ME by the Lightning Process - from a point at which she would regularly be found collapsed in a corridor at work in agonising pain and with a whole host of terribly distressing symptoms, to where she has just e-mailed from Cornwall having been kayaking, swimming and coasteering with her family. To call the woman who cured her a "money-grubbing leech" who "preyed" on my colleague is plain wrong. Worse, you could be putting off people who are in desperate need of help from accessing the very process that could help them be reborn.

    I am new to this site and I find the tone of some of the posts regarding the lightning process quite disturbing
     
  13. Valentijn

    Valentijn Activity Level: 3

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    To suggest that denial can cure a well-documented physiological disease is also quite disturbing. And completely illogical.
     
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If the lightening process cured other infectious and immune disorders then more of us cfs/me people would consider it as a treatment. Also there is a high error rate in diagnosing ME especially by the majority of gp's out there, so those who have been diagnosed with ME and have been cured by the lightening process could well have had a psychological condition that was missed diagnosed as ME. I would like to see proof of the lightening process working on someone diagnosed with active infections with immune dysfunction such as low nk function and or elevated t cells and see those markers improved. Until i see evidence of those markers improving, then i just cant see the lightening process or any other similar therapies working anymore then cbt or get would at curing ME, MS or lupus etc. I think its great that something like the lightening process has helped people but i question its value in a proper diagnosis of ME/cfs.
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It may be that your colleague had an illness with symptoms similar to ME but from which people can recover spontaneously. How long had she been ill?
     
    heapsreal likes this.
  16. ukxmrv

    ukxmrv Senior Member

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    The other possibility is that this colleague is in remission. They may have relapsed by now.

    That's one of the reasons I like to be able to go to support groups and meet patients in the flesh if I can.

    Over a very long period in London, which has lots of patients going through the Lightning Process, I've yet to meet a success. Met plenty of failures though.
     
  17. Dster

    Dster

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    She's been ill for 5-6 years, bed bound to start with, every test in the book, all her medical staff say ME - everything else has been eliminated, so it is/was definitely ME. Are you saying that because she's recovered from ME using the Lightning Process, she can't have had ME?
     
  18. Dster

    Dster

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    So because she's been cured by the lightning process, she can't have had ME. Interesting logic, to be sure
     
  19. Dster

    Dster

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    She's been ill for 5-6 years, bed bound to start with, every test in the book, all her medical staff say ME - everything else has been eliminated, so it is/was definitely ME. Are you saying that because she's recovered from ME using the Lightning Process, she can't have had ME?
     
  20. peggy-sue

    peggy-sue

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    There is nobody in the UK who can diagnose ME. In the NHS, they don't use the correct diagnostic criteria, they have conflated CFS and ME into some useless wastebucket "diagnosis" of CFS/ME, which is meaningless.

    CFS can be caused by psychological problems - that sort can be cured with the LP.
    ME is a physical disease, it can't be cured by a psychological treatment.

    This is really no different to my friend who was "cured of CFS/ME" by the fitting of a pacemaker. Not all of us have primary heart failure and require a pacemaker, but it was a cure for Rob. :)
     
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