Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

Discussion in 'General Treatment' started by zzz, Nov 1, 2014.

  1. soofke

    soofke

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    Dutchy
    Will Pharma Cholecalciferol vitamine D3 800ie, from my GP, the 2 other brands I got from the drugstore did little or even the opposite! Also, (detoxifiying) magnesium did nothing for my MCS while my D was low and works wonders now it's back up, yay.
     
    Last edited: Jul 16, 2016
  2. sflorence

    sflorence Senior Member

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    Thanks for responding!

    I am still trying to understand what you meant. So you went into remission of CFS by simply supplementing a certain brand of D and also taking magnesium?

    Or was it remission of CFS?

    Thanks
    -Stefan
     
  3. soofke

    soofke

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    huh....uhm....but it's worsening the brainfog apparently, I could've swórn I posted this in a topic about Multiple Chemical Sensitivity....o_O:thumbdown::oops: anyway, nope M.E is still flourishing but that's the next and hopefully final hurdle:depressed:
     
  4. sflorence

    sflorence Senior Member

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    Ah ok, thank you

    I meant MCS on the second one, but it seems that you understood either way.

    That is very interesting that a certain form of vitamin D reversed your MCS. I will have to try it.

    Do you have a link to your thread?
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @sflorence Sorry for the additional question but you had a complete reversal of MCS (I assume severe reactions to strong chemicals, odors, VOC's, perfumes etc) from using a certain brand of vitamin D? Is this what you meant?
     
  6. soofke

    soofke

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    yupsers @Gingergrrl, most deodorant/parfumes, new clothing, sunscreen, you name it. I give it a few more weeks but already shopping online for new outfits and spraying myself with anything lovely smelling, thought I'd end up in a (cotton) tent in our backyard, wearing old rags!

    can't find the actual topic if it even ever existed outside of my head @sflorence

    oh and don't forget the magnesium-calcium-zinc-boron
     
    Last edited: Jul 20, 2016
    Gingergrrl likes this.
  7. sflorence

    sflorence Senior Member

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    Oh my, this made me laugh. This is exactly how I am. It sucks to be MCS to perfumes and such, but the worst is when you have MCS to clothing and materials...

    Where can I buy this vitamin D? You RARELY hear of people fully recovering from MCS.

    @soofke
     
  8. perrier

    perrier Senior Member

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    Dr Goldstein and Dr Seastrunk have passed away. Is there anyone else doing their sort of work? And I wonder if their findings are being incorporated in the studies/ research being done in Stanford.
     
  9. Hip

    Hip Senior Member

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    Where did you read that?
     
  10. soofke

    soofke

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    don't think it's sold in the States or over the counter so I'm trying this to compare it, will let ya know how it turns out:nervous:
     
  11. perrier

    perrier Senior Member

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    I read on the internet that Dr Seastrunk had passed away. I was looking to see if he was in practice. As for Dr Goldstein, I may be wrong there. I just kept reading he that he USED to do this and that. So, I could be wrong on this one, for sure.
     
  12. sflorence

    sflorence Senior Member

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    Ah ok, thanks.
    What are you trying?
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @soofke Sorry I think I tagged the wrong person with my question but am glad you saw it anyway! So "Will Pharma Cholecalciferol vitamine D3 800ie" eliminated your MCS? Do you have MCS as part of mast cell disease or kind of separate on it's own? Prior to moving to our new apt and having to go back to a hotel, we bought a cot and sleeping bag for me b/c I was unable to tolerate all of the smells of where we were staying. I am okay with deoderants and natural make-up and no issues with clothing but I do not tolerate smells like VOC's, cigarettes, chemicals/cleaners, perfumes or colognes, strong food odors like raw onions, etc. I got to the point that smells alone were triggering reactions as bad as eating food (which was my worst trigger.) I am fascinated why a certain brand of Vit D would help this! I supplement daily with Vit D, 5000 IU of another brand.
     
    sflorence likes this.
  14. soofke

    soofke

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    the 1000iu by NOW Foods (starting tomorrow), but like gingergrrl is saying; a whole bunch of MCS'ers must be on D so I can't imagine they're all on the wrong brand and I happen to have some kind of magical right brand :cautious: but who knows!?

    no mast cell, just ME, or more like a Post Viral Syndrome since me and my very alternative therapist and ME-doc got rid of all the bugs like EBV, mycoplasma etc, so maybe that's more of a difference than a particular kind of brand?

    no or hardly food issues here, which is also weird right? how's the new, hopefully cotless, apartment? ;0)
     
    Gingergrrl likes this.
  15. Gingergrrl

    Gingergrrl Senior Member

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    @soofke, first I love the quote in your avatar but I think I have told you this before! I tend to agree with you that no brand of Vit D could have magical powers to reverse MCAS or MCS but then again, stranger things have happened!

    I suspect we are in different subgroups if you were able to get your EBV titers negative (which I cannot do thus far) and I was always negative for mycoplasma so this part we are different, too.

    I think this was addressed to me, and if so, yes, I no longer need the sleeping bag or cot in the new apt and am not allergic to anything so far in the new apt and it's been one week as of tomorrow.
     
    MeSci likes this.
  16. soofke

    soofke

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    perhaps I'm typing too soon but I usually know right away and after taking this vitamin D something feels 'off'; slight heart palpitations and sweating (could be the heatwave..) but will post an update in a week or so so I won't bother you guys (or go too off topic here) with every little palpitation in the meantime :p my own avatar reminds me sometimes that apparently this is not the end yet

    *edit* an early upd8; already I can't clean the litterbox myself so gonna go back to the magical brand haha
     
    Last edited: Jul 20, 2016
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  17. sflorence

    sflorence Senior Member

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    @soofke

    Did you ever tell us how to get the magical brand? A doctor got it for you, correct?
     
    Gingergrrl likes this.
  18. soofke

    soofke

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    yeah, my level was below 25, do you know yours? and is yours a prescription @Gingergrrl?
     
  19. sflorence

    sflorence Senior Member

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    Can you ask your doctor where he gets it from? I would appreciate that
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @soofke, so you switched brands and got negative symptoms back but now back on your original brand (which I assume was a prescription)?

    My Vit D level drops off the charts unless I supplement it (have seen it as low as 4 and 8, etc). With 5000 IU's per day I got it up to 30 and with 10,000 IU's I got it above 60. So have dropped it back to 5000 IU's to see what happens. It is measured several times a year by my Endo who monitors my thyroid. I did take a prescription Vit D, many years ago but the last year or so have taken "Doctor's Best" Vit D3 which is just Vit D3 in an olive oil capsule. It was the purest one I could find without other additives or crap.

    Sorry if you already explained this but the one you took that eliminated MCS for you was a prescription not OTC?
     

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