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Well known people reported to have Lyme Disease.

Discussion in 'Infections: Lyme, Candida, EBV ...' started by Patient4Life, Jan 8, 2020.

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  1. Marky

    Marky Senior Member (Voting Rights)

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    Yea I think thats it too.. Together with the fact that the more u read about something the harder it is to stay objective (if ur minds already somehow made up)
     
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  2. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    Yes. I personally believe that there has been damage to the nervous system and possibly the immune system was sent into overdrive or it is weakened rather than an ongoing infection. Of course, it may be buried in nerve tissue. But, I don't believe they have an ongoing infection. More like the immune system can no longer keep simple infections, herpes viruses, and EBV at bay. Then they become chronic.
     
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  3. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    I was hopeful and kept trying all kinds of doctors and had all sorts of tests for 2 decades. It finally hit me. There would be no improvement and a couple of years after that realized I was only getting worse.
     
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  4. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    I want to basically agree with that.

    I have been tested positive for Lyme ("compatible with late stage Lyme") with ELIA and western blot. But the impact may be lasting even without persistent borrelia, at least in case of the nervous system. My test even might be wrong, as earlier tests (though ELIA only) have been negative, or my immunesystem only produces antibodies in certain stages of the my illness.

    Aguirre et al 2013 showed that borrelia can accumulate huge amounts of this metal. As I got my me/cfs later from EBV, and this virus blocks the VitD receptor which encodes the manganese/zinc exporter ZnT10, it is reasonable that my me/cfs is (partly) caused by high manganese, be it with or without persistent borrelia. It is well known that the nervous system reacts sensible to Mn (Mn has also impacts on the immunesystem).

    So, I am (very) slowly improving from a low manganese diet, and I don´t mind if there might be still any borrelia (as they are in need for Mn, they will be starved anyway).
     
    Patient4Life likes this.
  5. Bombino

    Bombino Established Member

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    If the metabolic trap hypothesis is correct, then my guess is that that shift happened. I also think that due to the cfs immune system they are more likely to have it reactivate again than a healthy person and they should be on guard, testing periodically with standard herbals such as the ones recommended by Stephen Buhner to evaluate whether they have the bacteria reactivating.
     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Henrik Vogt has a an opinion piece about Justin Bieber in a Norwegian newspaper today. Henrik Vogt is MD and leader of the user organisation Recovery Norge, which shares stories mostly about people who say they were cured from ME by Lightning Process. This in order to "provide hope".

    He warns about uncritical reporting about Lyme disease, and how the media and the public accepts such celebrity stories without asking questions. Bieber has a lot of influence, and can thus spread misconception.

    He says that Lyme disease has, particularly in USA, become a pseudoscientific, alternative-medicine-explanation for several debilitating symptoms. Symptoms without specific diagnostic explanations which are often considered as "medically unexplained", but that may, for instance, be compatible with prolonged, severe stress.

    The symptoms are the same as in CFS or ME and then he links to this article from BBC: Long-term Lyme disease "actually chronic fatigue syndrome"

    He further talks about a pseudoscientific alternative-medicine environment on the rise in USA with doctors on the forefront and with research "as resistant of facts as vaccine resistance".

    Then he writes:
    There are many people with health problems that can be difficult to explain.It is important to emphasize that these problems can be serious and need better understanding and better help for patients. But it is also important for medical ethics and public health to put an end to this alternative medicine, and celebrities in search of explanations are unfortunately the most effective vectors for their medical misinformation.

    And towards the end he writes
    The fact that doctors are in the foreground does not mean that it is durable. There are many examples of doctors acting wholly or partially with questionable treatment.

    Nei, Justin Bieber har sannsynligvis ikke borreliose
    google translation: No, Justin Bieber probably doesn't have Lyme disease
     
    Last edited: Jan 10, 2020
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  7. NelliePledge

    NelliePledge Moderator Staff Member

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    @Kalliope it’s supremely ironic that Vogt is talking about pseudoscience when he is such a zealot for LP ultimate pseudoscience
     
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  8. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Vogt has fairly accurately articulated the ethical concerns here, I think. The whole 'Lyme-literate' space seems to be in large part a dangerous and expensive scam perpetrated against ill and vulnerable people.

    Of course the irony is not to be lost and I think we would all do well to take a moment to reflect on how hard it often is to apply clear critical thinking to our own work and beliefs, in contrast to that with which we disagree or find disagreeable.
     
  9. duncan

    duncan Senior Member (Voting Rights)

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    Yet evidently it is most of the IDSA Lyme Guidelines' co-authors, along with several insurance companies, who are on trial for alleged RICO violations.
    https://dockets.justia.com/docket/texas/txedce/5:2017cv00190/179306
     
    Last edited: Jan 10, 2020
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  10. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    Court filings here.

    Kaiser Permanente settles here.

    I have always said that ME/CFS patients should be bringing lawsuits.
     
  11. NelliePledge

    NelliePledge Moderator Staff Member

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  12. duncan

    duncan Senior Member (Voting Rights)

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  13. NelliePledge

    NelliePledge Moderator Staff Member

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  14. Marky

    Marky Senior Member (Voting Rights)

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    We were many that pointed out the irony of Vogt criticising alternative treatment in borrelia in a "sceptic" FB-group, now after criticism, the whole thread got closed for comments by moderators; and i assume he asked for it
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    I have no idea where to put this so whatever. Probably unknown to most Europeans but Seacrest is a pretty high profile celebrity in the US.

    Ryan Seacrest Diagnosed With Incurable Disease After 'American Idol' Scare And Surprise Vacation?
    https://www.gossipcop.com/ryan-seac...ican-idol-scare-and-surprise-vacation/2548111
     
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  16. Mij

    Mij Senior Member (Voting Rights)

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    He got 'hit' with ME because he couldn't get out of bed. About a month ago there was speculation that he had a stroke because he was slurring.
     
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    No I believe he will be known by some he’s been a host on some reality tv shows that Have been shown here. Oh dear yes I realised after American idol is in the post. It has been shown here.
     
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  18. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    The most astonishing part of this thread for me is this bit from the quote in post #1.

    I'm gobsmacked that there is sufficient material for all this filming.
     
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  19. Marky

    Marky Senior Member (Voting Rights)

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    Reminds me, whatever happened to Justin Bieber and his diagnosed borrelia?

    At the time i thought, great! They will have one of the most famous celebrities ever as the spokeperson. Now, when i search for "Justin Bieber borrelia", the only searches that pop up is from January. Now, they were supposed to make an documentary on his borrelia. Was it all a scam then? I found it quite dishonest tbh
     
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  20. wdb

    wdb Senior Member (Voting Rights)

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    Sounds like there wasn't :laugh:

    The documentary, entitled Seasons, is 10 episodes long. Each episode lasts for roughly 10 minutes. If the first four episodes are any indication, they won’t exactly be highlight-heavy. In fact, a good editor could probably take the best bits of the whole series and fit it into a Snapchat post. Which might not have been what YouTube was expecting, given that this 100-minute collection of meandering home videos reportedly cost over $20m to acquire.

    https://www.theguardian.com/tv-and-...-bieber-seasons-youtube-years-most-tedious-tv
     
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