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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Sulfur Deficiency and Sun Exposure

Discussion in 'General Treatment' started by u&iraok, Nov 3, 2011.

  1. u&iraok

    u&iraok Senior Member

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  2. Gloria H

    Gloria H

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    Thanks for the link. I found that article to be very interesting!

    "glutathione, the other sulfur-containing protein ..There is a growing awareness that glutathione deficiency may play a role in many diseases. Whether the problems that arise are just due to insufficient supply of the glutathione molecule itself, or whether a more general sulfur deficiency is the root cause, is perhaps hard to say, but provocative nonetheless. "

    Lately, I've noticed that having 1/8 tsp of sodium sulfate [Glauber's salt] in a pint of water, is helpful in bringing me out of a foggy state. I recently started Mb12, Ab12 & Metafolin. Over the years I've often seen myself making positive turn-arounds after increased sunshine, too.
  3. Enid

    Enid Senior Member

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    Thanks for the interesting article u&iraok - I have read about the disruption of the sulpher cycle in ME (if recall correctly). An odd conundrum may be solved - unable to tolerate alcohol for many years I'm able to drink a large glass of specifically red wine again wary of the suphates/sulphites content declared though. My GP approves - strange thing is I do feel better for it (relatively speaking) and will look into for other forms to boost now.
  4. richvank

    richvank Senior Member

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    anne_likes_red likes this.
  5. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Would you elaborate on this, Rich?
  6. anne_likes_red

    anne_likes_red Senior Member

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  7. dannybex

    dannybex Senior Member

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    Hi Rich,

    I'd also be very curious regarding your interpretation of her work. I found the article months ago, and even contacted her, but then let it slip. I especially found it intriguing as I've had so much muscle loss this past year.

    Thanks as always,

    Dan
  8. mellster

    mellster Marco

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    I do believe strongly in increased, full body sun exposure without sun screen for as long as practicable (without getting visibly sun-burned) as part of treatment. I have been living in one of the sunniest areas (the bay area) for over a decade, but working hard as a programmer inside the office, doing most work-outs inside and having experienced (skin) docs advising patients to wear sun screen when walking to work (!), I am not surprised about the prevalent Vitamin D deficiency and other problems related to people not getting enough sun exposure (esp. without being lathered with sunscreen) that has been reported recently here.
  9. sandralee

    sandralee

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    Being in direct sunlight makes me feel really terrible. My doctor tells me that 1/5 of his ME/CFS patients report the same phenomenon.

    Does anyone else experience this, and what could be a possible explanation?

    Thanks,

    Sandra
  10. alex3619

    alex3619 Senior Member

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    Hi, this is a very nice model indeed, touching on many points including why we may have issues with LPS translocating from the gut to the blood. It also raises the interesting possibility, possibly indirectly, that glutathione depletion may be linked to it being used more often as a sulfur source in the body, which will preclude it being used for other things. Glutathione has many roles, its not just an antioxidant. It might also potentially explains why so many of us do badly in sunlight - our sulfur level is insufficient. Signs we should be looking for: gut issues and skin infections. If you have those this model might be relevant. The treatment? Sunlight and egg whites. Egg yolks probably also, but I am less sure about their benefit in CFS. The other protein source mentioned is fish.

    Another intriguing possibility that arises is that aquired high cholesterol could be a reaction to low sulfur - the more cholesterol you have, the greater chance you have of creating cholesterol sulfate. I wonder if this has been investigated.

    Bye, Alex
  11. anne_likes_red

    anne_likes_red Senior Member

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  12. mellster

    mellster Marco

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    Thanks Anne, very cool. My cholesterol-rich diet could explain why I never had any brain-related CFS issues or issues with thinking/concentrating :)
  13. merylg

    merylg Senior Member

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    Thanks Anne! I enjoyed this whole discussion re absorbing energy from the sun through our skin, it's action on Sulphur/Sulphate with regards to D3 activation to D3 Sulphate....
    ...also the action of sun's energy on Cholesterol to make Cholesterol Sulphate, it's carrying of extra oxygen to muscles.
    Also enjoyed discussion re diet & cholesterol, as well as dietary Sulphur (sometimes it can be good to live in the shadow of a volcano!)
    Her depth of knowledge re vaccination issues was interesting too.

    meryl
    anne_likes_red likes this.
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have seen that video. I go to his site a lot. So much good info.
  15. anne_likes_red

    anne_likes_red Senior Member

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    Yes, I think I learned a little more about a lot of things. And a lot about the importance of sulfur! And isn't she...well, just such a nice lady! Sounds like she's had a very interesting career.
  16. richvank

    richvank Senior Member

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    Hi, Sandra.

    It could be a pyroluria. That has to do with the formation of heme. If part of this is blocked, substances can build up in the blood that are sensitive to sunlight. It's been a while since I studied this, and I can't remember all the details, but I suggest that you look into the pyrolurias.

    Rich
  17. richvank

    richvank Senior Member

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    Hi, Slaya.

    The sulfur metabolism is very much involved in ME/CFS. Dr. Seneff is focusing on this metabolism. She's looking at some different aspects than I have been with the GD-MCB hypothesis, but I think there could be some overlap. Certainly if there is an overall sulfur deficiency, it can't be good for glutathione, for example, which relies on a sulfur atom to do its business.

    Best regards,

    Rich
  18. richvank

    richvank Senior Member

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    Hi, anne.

    Thanks from me, too! I watched the video. I emailed her, and she responded. Looks like we are going to interact some. It will be interesting to see what comes out of this.

    Best regards,

    Rich
    anne_likes_red likes this.
  19. slayadragon

    slayadragon Senior Member

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    I could be wrong, but it seems to me that there are a lot of various steps, co-factors, etc. that are involved in allowing us to convert the raw sulfur that we take in (such as in eggs) to usable form. It would be interesting to think about what those are, to figure out whether there might be particular places where we're blocked.

    I am especially interested in sulfur because of an experience I had last winter with a homeopathic treatment. I went to a constitutional homeopath in Las Vegas, and he recommended Natrum Sulfuricum (which I do think is the right constitutional for me). As soon as i took this, I had an enormous detox response, with a huge amount of toxin suddenly being freed from my brain. This went on for about six weeks and was basically incapacitating (I'd been doing okay before that). Finally all that toxin flowing through had such a destructive effect on my liver and intestines that I temporarily stopped the reaction (by drinking a lot of coffee). After a couple of months of rest, I took another dose and got another big reaction.

    This was an even more dramatic detox experience than the others I'd had in the past, and I think it turned out to be the most beneficial treatment I've done (apart from mold avoidance). I'm thinking I will try one more dose of the homeopathic this winter, to see if I can make any more progress.

    Of course, if I'd not had all the other little pieces lined up in terms of all the other supplements I was taking, probably it wouldn't have done anything. All of these detox co-factors work together, of course.

    I wish I understood why the homeopathy had such a big effect in helping to turn on the detox mechanism. It felt like the same thing that happened when I first started taking Metafolin -- that some pathway had been turned on for the first time in a very long time.

    So I'm wondering if there are co-factors etc. that might be involved with sulfur.

    The comments that she makes in the article about raw milk are interesting. I would be a little nervous about just drinking raw milk, but making it into kefir sounds safe (since the probiotics should kill off any stray bad bugs). Maybe I will try to get some of that.

    The 7-part video series looks worth watching. Note how she talks in Part 2 about the necessity of zinc in the "battery" process. Pyroluria involves a zinc deficiency (I have been supplementing with large amounts of zinc over the 18 months), so that would fit in.

    Best, Lisa
  20. richvank

    richvank Senior Member

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    ***Hi, Lisa.

    I could be wrong, but it seems to me that there are a lot of various steps, co-factors, etc. that are involved in allowing us to convert the raw sulfur that we take in (such as in eggs) to usable form.

    ***That's very true. If you want to see what those steps are, check out the diagrams of the sulfur metabolism that I have used in several talks, the most recent one being the one in Sweden. A video and the PDF slides can be found here:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    It would be interesting to think about what those are, to figure out whether there might be particular places where we're blocked.

    ***Yes, that's what I've done with the glutathione depletion--methylation cycle block hypothesis. People with ME/CFS have a partial block at methionine synthase, which is in the methylation cycle, and that is near the beginning of the sulfur metabolism. This partial block causes dysfunction of the entire sulfur metabolism, which includes methionine, SAMe, homocysteine, cysteine, glutathione, taurine, sulfate, and many other important sulfur-containing substances.

    I am especially interested in sulfur because of an experience I had last winter with a homeopathic treatment. I went to a constitutional homeopath in Las Vegas, and he recommended Natrum Sulfuricum (which I do think is the right constitutional for me). As soon as i took this, I had an enormous detox response, with a huge amount of toxin suddenly being freed from my brain. This went on for about six weeks and was basically incapacitating (I'd been doing okay before that). Finally all that toxin flowing through had such a destructive effect on my liver and intestines that I temporarily stopped the reaction (by drinking a lot of coffee). After a couple of months of rest, I took another dose and got another big reaction.

    This was an even more dramatic detox experience than the others I'd had in the past, and I think it turned out to be the most beneficial treatment I've done (apart from mold avoidance). I'm thinking I will try one more dose of the homeopathic this winter, to see if I can make any more progress.

    Of course, if I'd not had all the other little pieces lined up in terms of all the other supplements I was taking, probably it wouldn't have done anything. All of these detox co-factors work together, of course.

    I wish I understood why the homeopathy had such a big effect in helping to turn on the detox mechanism.

    ***That's very interesting. I can't claim to know how homeopathy works, but I've received a lot of evidence from people I believe (including you!) that it does. I do think that the sulfur metabolism is the key to ME/CFS.

    It felt like the same thing that happened when I first started taking Metafolin -- that some pathway had been turned on for the first time in a very long time.

    ***Metafolin supports methionine synthase and helps to overcome the partial block there.

    So I'm wondering if there are co-factors etc. that might be involved with sulfur.

    ***Yes, there certainly are.

    The comments that she makes in the article about raw milk are interesting. I would be a little nervous about just drinking raw milk, but making it into kefir sounds safe (since the probiotics should kill off any stray bad bugs). Maybe I will try to get some of that.

    The 7-part video series looks worth watching. Note how she talks in Part 2 about the necessity of zinc in the "battery" process. Pyroluria involves a zinc deficiency (I have been supplementing with large amounts of zinc over the 18 months), so that would fit in.

    Best, Lisa

    ***Best regards,

    ***Rich

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