The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Julie Rehmeyer: How to Assess Internet Cures Without Falling for Dangerous Pseudoscience

Discussion in 'General ME/CFS News' started by Sushi, Jun 20, 2017.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Julie just had this article published in Slate. It is sort of a synopsis of her book and valuable for those who haven't had the opportunity to read it.
     
  2. Learner1

    Learner1 Professional Patient

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    I love it! What a well written article!
    Thanks for sharing!

    Kinda makes me wish I had mold, though....:rofl:
     
    Tally and Sushi like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    Having lived through it, you really don't wish that you had mold, I promise! :eek:
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Except that in some cases, like Julie's, there was a very successful way to regain nearly full health.
     
  5. Learner1

    Learner1 Professional Patient

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    No, I really don't!! I feel for you and the other mold sufferers I know.:hug:

    I think I do envy one target to shoot at, rather than the 3 ring circus I live with!:wide-eyed::aghhh::woot:

    But, we all have our challenges, don't we?
     
  6. jimells

    jimells Senior Member

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    I wonder if Julie and other "moldies" have looked into the possible role of mast cell problems in their illness. Maybe I've just been spending too much time reading about mast cells, but the more I learn about them, the more they seem to be involved in all sorts of odd symptoms and poorly understood illness.

    Here's an excerpt from Lopes et al, "Opportunistic pathogen Candida albicans elicits a temporal response in primary human mast cells", 2015:
    I don't think I have a mold problem, but I am quite sure I have a mast cell problem. Since I started taking zyrtec (an over-the-counter anti-histamine targeting H1 receptors) a few months ago, a very bad relapse punctuated by frequent hyperadrenergic POTS crashes has turned around rather dramatically. Plus the worsening itching-on-standing and itching-on-doing-just-about-anything has stopped.

    Very recently I also started taking tagamet, an H2 receptor anti-histamine, to see if I can improve low blood pressure and IBS symptoms. So far, I'm not sure if it's helping or not. Doesn't seem to be hurting, so that's a good start, I think.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    That is such great news! I still take Zyrtec once a day (and imagine that I always will) but Zyrtec alone was not enough to make a dent in my MCAS symptoms until we added in some other stuff. I am so glad you are feeling better, that is wonderful news.
     
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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Julie said that she has looked into this, but was just beginning her exploration.
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Let's keep this thread on Julie and her article so that it doesn't "go wandering!"
     
    SueJohnPat likes this.
  10. Murph

    Murph :)

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    It's a good piece. Obviously the comments section is full of people with vast and unwavering faith in doctors infallibility. What I'd do if I was writing such a piece is give the reader a sort of chronology of the discovery of disease, and a list of rare diseases doctors know they can't treat. Just in order to prime them to the idea that yes, medicine is not yet omnisicent and sometimes you can't just get a cure from your doctor.

    I think that's an under-emphasised part of teaching people about CFS, and I like the way Davis describes it as the last big disease medicine knows nothing about.
     
    Hutan and Tunguska like this.
  11. Alvin2

    Alvin2 Senior Member

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    Well written article. I agree that mainstream medicine leaves a lot to be desired, but you also need to be very wise when trying to work beyond it. Snake oils are more common then undiscovered causes/treatments, but as is well pointed out undiscovered treatments do exist and can sometimes be found.
     
    HowToEscape? likes this.
  12. Mel9

    Mel9 Senior Member

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    Great story and it is so good to see a relative recovery but it is odd that Julie thinks she is being unscientific by following a line of enquiry into the possible effects of 'molds' (fungi) on human health.

    Mycology is a well respected science but little known to most scientists and doctors (and science journalists) because little is taught at university level

    Even most microbiologists know a lot about bacteria but little about fungi.

    Now the next step is to test those wash cloths, including the non-infected controls, for fungi.
     
    SueJohnPat and Gingergrrl like this.
  13. SueJohnPat

    SueJohnPat Sue

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    I have tried blocking my histamine receptors with Tagamet / Zantac and Zyrtec.benedryl. It did not have any effect. Was thinking of trying a mast cell stabilizer like nasalcrom.
    I have been injected with histamine and it actually felt good to me , like it relaxed me or something for a minute. Weird.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting @Mel9 and really a shame that it is not taught to most scientists and doctors at the university level. I am hoping this will some day change.
     
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  15. btdt

    btdt Senior Member

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    what other stuff was added...
    I have trouble with H2 blockers on high dose at least I go nuts and want to die so I hope it is not that... odd reaction after a car accident ... stomach would not settle went back to er got a H2 blocker dose was doubled later that wk... bam nuts. Luckily I know a drug reaction now I have had so many... just did not know which drug was causing it... so I hope your other drugs added were Not H2.

    I did some reading about mold I found interesting earlier this wk and how to treat it apparently and how it causes cfs and mcs...
    at this post here
    http://forums.phoenixrising.me/inde...scribes-julie-rehmeyers-me-cfs-odyssey.52115/
     
  16. btdt

    btdt Senior Member

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    I was about to take a trip down self hacked road so of course the title of this thread jumped out at me ... I have a lot of books and supplements...ect ect ect... from online reading and testing and naturopaths... blah blah blah...

    so yes I am susceptible to online cures... since online is the only place that offers them and I want one real bad...
     
  17. btdt

    btdt Senior Member

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    People don't get it. They don't know what it is like to live the way we do not knowing if this is the final step to the nursing home diapers and soft food... or if your well for a bit will you be sick again soon.
    They don't get having a disorder that has no proper treatment for 30 years... they just don't and trying to explain it to them takes more energy than any person who has the disorder can afford...

    So I am glad she did it best she could from the short time she has had it.
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    Take this with a grain of salt as I know we are all different but the med that turned it around for me was Ketotefin. My MCAS combo used to have a million things but is currently only four: Zyrtec, Ketotefin, Pepcid and Quercetin. My rescue med was Atarax but now I only use it as a pre-med for IVIG. And the treatment that put me into remission was the IVIG itself.
     
    Webdog likes this.
  19. btdt

    btdt Senior Member

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    this is a post I made at the other thread with her name.
    if you look at how the immune HDL2 is talked about there could be many things that set it off.. once on it does NOT turn off.


    I just read an article this wk stating mold was the cause of cfs mcs...
    here it is if anyone wants to read it
    https://blog.bulletproof.com/how-your-house-can-make-you-weak/

    Some lab tests here
    http://www.survivingmold.com/diagnosis/lab-tests

    including how genetics is involved
    "HLA DR - Your Genes
    Human Leukocyte Antigens (HLAs), are found on the surface of nearly every cell in the human body. They help the immune system tell the difference between body tissue and foreign substances.

    The immune response genes are found on chromosome six. Patients could have two alleles, copies of genes (for each gene, one allele is inherited from a person's father, and the other is inherited from a person's mother), out of approximately 10 possible, as part of their genotype. Based on Dr. Shoemaker's data, in normal populations compared to international registries of gene frequencies of HLA DR, we know the frequency of mold illness-susceptible patients approximates 24% of the normally distributed population. Almost a quarter of the normal population is genetically susceptible to chronic mold illness. Three quarters isn't."

    I cannot as of yet get my head around much that is genetic tho I blew the cash on 23 and me..... so this is for you people who can.

    all the test about mold and this at the link above

    another site about toxic mold tests
    http://paradigmchange.me/diagnosis/

    I did read all this a few days ago and I can't tell you what it is about although at the time I thought it was quite possible and did mean to go back and read this
    https://selfhacked.com/blog/c4a/

    I forgot about it... so did not read it and would never have looked if I did not see this post.

    She is better that is good she wrote a book laying out or pain for the world a world we no longer fit into... one I miss greatly. A few touchy painful spots just in this thread... explaining or not explaining to others why you can't get up... or faking it when you can get up...
    worse still the disappointment you see in the eyes of people who love you when they look and see again... the can't.... when all they want is can.....

    letting down everyone and everything.. and the avoidance the neglect by medicine... ya it touches some of those things and I for one know it all too well...

    maybe we don't have it in our face spelled out and maybe some of us are strong enough or have not looked closely at this yet... I have and I know I won't be reading this books because I know for me this lack of help/treatment and the looking the las 30 years in the face... that is more than I can do. Again...just now.

    Still I hope it is an eye opener for some who never heard of cfs... and who knows if mold turns out to be the main cause and we all get cured who cares how we found it not me...
     
  20. btdt

    btdt Senior Member

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    10 years ago a stomach doc sent me to a rhumy.. cause of an IGG test result rhumy said I was fine... sent me home... Stomach doc said IVIG was the only treatment... but did not offer for me to have it. ...too tired..how often do those words get posted here plenty I think..
    peace all good night
     

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