Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Kenny De Meirleir treatment

Discussion in 'ME/CFS Doctors' started by bostjan01, Dec 26, 2017.

  1. Helen

    Helen Senior Member

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    He is definitey a person who carefully listens to you, and recommends tests and treatments based on that. I would suggest that you write down your questions before the appointment, and I´m sure you´ll get replies. I would wait with the questions until he has finished talking.
     
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  2. pibee

    pibee Senior Member

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    a bit off topic, can you please tell me how you shipped blood to IgeneX, was it expensive and complicated from Europe?
    Also Galaxydiagnostics, sent me brochure about shipping but it's so complicated.

    I am considering this, because, I was high positive for Lyme via Elispot and CD57, and had some more specific symptoms like Bells palsy (although it can be from herpes virus too but it's much more common in Lyme). Just like you I did bunch of antibiotics, overall they made ME worse, but many neuropsychiatric symptoms, TMJ problems and neuropathies better, or even resolved, so I think this is definitive proof I had or still have bacterial infection.

    But lately I am thinking if these bacterial infections are only significant in us just like viruses are, because of exhausted immune system, so consequence of autoimmunity (this would be my wishful thinking too).... so i will check igenex to see what's up.

    If you had only worsenings from antibiotics, more antibiotics for gut dont sound like a good choice to me.
     
    Last edited: Jan 26, 2018
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  3. Folk

    Folk Senior Member

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    http://www.ncf-net.org/forum/CallForResignation.htm
     
  4. aquariusgirl

    aquariusgirl Senior Member

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    No axe to grind here. Honest question... but that was 2002 and we've known about R NAse L since then and nothing has come of it? So what does that say about the significance of it?
     
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  5. Folk

    Folk Senior Member

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    Well the point it's not about the quality of information but the unethical decision of witholding information.

    @unicorn7 was defending him, and he has all the rights to do so, I just pointed facts. The prosecution and the fact he's associated with the labs he orders tests. His answer was he didn't know about that so I just showed.
     
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  6. msf

    msf Senior Member

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    A falsehood! I do decry it! Also, you spelt it so badly it might have been persecuted, I which case I agree.
     
  7. msf

    msf Senior Member

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  8. unicorn7

    unicorn7 Senior Member

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    I have read that page, but it's from a society right? Not a real legal prosecution? I had tried to find out what happened with that, but it's a really long time ago and I couldn't find anything.

    I have the same question as aquariusgirl. Isn't that information in his book? The RNAse-L thing is pretty well known, I think a lot of people have dismissed it's importance, so I don't really get the point that he was trying to hide it and that that's the reason we don't have a solution fro ME/CFS yet. Seems a bit out there.

    I know a dutch website that has a very good interview with him printed (its pretty old, I think 2007), and he talks about the whole RNAse-L theory there as well.

    I don't know if he's financially gaining from RED-labs or not, but in his clinic and the prices there, I can't see any sign of wanting to make a lot of money of sick patients, to be honest I see the opposite.
     
  9. msf

    msf Senior Member

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    Perhaps you just don't know what the word means.
     
  10. bostjan01

    bostjan01

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    No, it wasn't complicated to ship to US. It was back in 2012 and if I remember correctly IgeneX demanded that a doctor requests test. This was really the hardest part. So I had to go to my GP and ask her to request test. I shipped through DHL. When tests were done they faxed it to my GP.
     
  11. Folk

    Folk Senior Member

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    I just meant prosecuted, 1 letter typo. My native language is portuguese do you speak any of it? we can try that. (or spanish) I'm guessing no.

    He surely was persecuted too though, but with good reason.

    Yes he published on his book by $89.24 on Kindle or $172,95 Hardcover (talking about money....).

    Still that's not how it works, you withold information unitl you publsih a book.
     
  12. Lipac

    Lipac Senior Member

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    michigan
    @bostjan01 I was sick so long and finally got (3 sets) of definitive Borrelia tests . My clinical picture fit ( acted like MS not FM, etc). I lived in two high Lyme areas since birth ( great lakes and Sweden's highest Lyme county). Many my age from school were getting sick around 40 .

    However, Lyme treatments didn't help. My functional medicine Dr wouldn't give me more.

    * I too now wonder if Lyme positivity is endemic in certain areas... and not my primary problem, but one of many. No one can say for sure.

    And after 30 years, if it's second stage ( like syphilis, which studies DO show a parallel course of both diseases), antibiotics don't turn around the progression, or cardiomyopathy, or cns degeneration, etc.

    At this point, I DO tell my Drs because it MAY be part of the clinical picture.
    If I had latent TB, or had polio, I'd do the same.

    But I won't try any more very $$ Lyme treatment.
    Supportive therapies are the best, IMO.

    I view it like post polio syndrome or syphilis or anything else that isn't effectively " cured" but goes on in later life to cause degeneration and disability.
    Maintaining hormonal, cns, mitochondrial function; and limiting DNA damage and chronic inflammation are about the best I can do.
     
    Last edited: Jan 27, 2018
  13. Lipac

    Lipac Senior Member

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    michigan
    I live in Michigan. Independent testing 10 years ago showed among symptomatic and asymptomatic people around the Great Lakes ( Minnesota, Wisconsin, Michigan, Ontario Canada, )
    90% tested positive on highly specific borellia Western Blot testing. The study is on the ILADS site.

    People are getting MORE ill with chronic diseases ( like " probably ALS" or " something Autoimmune" ) than past generations.

    I know people who died at 65 from chronic illness with no name, while thier mothers and aunts/ uncle's are Healthy at 85-100. This is SHOCKINGLY common- people from 40-60 more disabled than thier elderly parents.
    It is my case.

    Much has to do with how woodlands were managed in the 1960-70s, allowing for a POPULATION EXPLOSION of BORELLIA- CARRYING ANIMALS.
    This was the case in the Northern US- when I lived in Sweden, it was the same practice, and they have a date as high as my state in the US.
    I'm not sure how Central Europe managed forests and deer populations.

    I have learned MUCH from Veterinarians, who know about disease epidemics decades before medical Drs.
    The best Indicators of infection and disease rates, are to look at animal disease maps ( dogs, horses, cattle, sheep; but esp dogs and horses).

    THOUGH IT'S KNOWN ( talk to a Veterinarian or Epidemiologist) almost nothing is written about TRANSMISSION BY BIRDS. They have carried BORELLIA- around the world. It's endemic among forestry workers in Australia. It's in Japan.

    MANY PEOPLE HAVE GOTTEN IT IN NEW YORK CITY, WALKING IN CENTRAL PARK.
    YOU DON'T HAVE THE BE IN THE WILD.

    I am happy for those who get SWIFT treatment in the first year; though that is no guarantee it won't progress.

    ALL OF US IN THIS AREA WHO HAVE IT, HAD weeks of ANTIBIOTICS AS CHILDREN OR TEENS. Acne treatments for 1-2 years should eradicate it.

    Genetics, methylation, number of exposures, increasing virulence of the bacteria - all seem to have a correlation with re emergence, and severity.

    So, yes the exposure/antibody production can be as high as 50%, or higher.

    Historically, in the past almost EVERYONE in Europe tested positive for TB, and was exposed. Not all were Chronically Ill or died, but all were exposed and most were carriers.
    Same with the plague, Influenza, etc.
     
    Last edited: Jan 27, 2018
  14. msf

    msf Senior Member

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    That's not what prosecuted means in English. When I speak Chinese I try to check any terms I'm not sure of, especially when someone questions what I said.
     
  15. Folk

    Folk Senior Member

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    Ok if language is your best argument I'm outta here. (I meant what I said)

    Just gave my 2 cents on KDM ethics. Good luck to the OP.
     
  16. bostjan01

    bostjan01

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    Do you know if Eurovolley hotel or any other offer lunch and dinners? I'm checking out hotels that they recommended me in email that Himmunitas sent me but they only offer breakfasts. I'd have to stay 2 nights in Belgium. How did you guys organize meals?
     
  17. Sushi

    Sushi Moderation Resource Albuquerque

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    When I stayed there (a few years back) they had a buffet breakfast that was extremely generous and included more than enough ingredients to make a sandwich with for lunch (they were okay with that), so I took the sandwich with me to the clinic for lunch. Their restaurant had nice dinners and if you spoke to them earlier in the day, they would accommodate special dietary needs. There is also a sandwich and salad restaurant about a block away on the same side of the street.
     
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