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Waking up with fight or flight response -- excess sulfur?

Discussion in 'Genetic Testing and SNPs' started by wondrous, Feb 18, 2017.

  1. wondrous

    wondrous

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    Hey guys, I'm just looking for your opinions on this reaction I'm having. Every so often, when I wake up in the morning, I'll awaken in the fight or flight response; feelings of doom and gloom, racing heart, and just raw panic. Sometimes it's so bad that my whole body is shaking and this can take quite a few hours to reduce in intensity.

    Through observation, trial and error, I was able to determine that the reaction only happened if I had eaten foods high in sulfur the day before. After thorough research, the only possible explanation for this phenomenon is excess sulfur, whether it be due to CBS or SUOX (not sure if I have SUOX).

    Does this make sense or I have gone off the tracks? o_O
     
  2. aaron_c

    aaron_c Senior Member

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    Hi @wondrous . I think you could be on the right track.

    As this study reports "Accumulated sulfite reacts with cystine, thus leading to the formation of [S-sulfocysteine], a glutamate analogue, which is assumed to cause N-methyl-D-aspartate receptor-mediated neurodegeneration."

    I think this is also why a number of people who take molybdenum experience initial fatigue that fades over the course of weeks (I swear there used to be a thread on this but I can no longer find it). As you probably know, molybdenum is necessary for SUOX to convert sulfites to sulfates.

    You might want to consider taking more molybdenum instead of less sulfur. We do need sulfur, and I don't think a low-sulfur diet is a great thing long-term--at least if there are other options.
     
    Theodore likes this.
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I'm not a doctor, so ignore all of us including me if you want true guidance.
    However, as you asked our opinion as patients....

    Bottom line: It's your body. If you think it's sulfar, test for it. If this will set your mind at rest:
    If you're in Europe or can send a sample there from your location the cheapest place I know of to test
    for this is European Laboratory of Nutrients in Holland (ELN). Be mindful laboratories that are 'cheap' aren't certified - hence they're cheap. I'd test there first and if abnormal, use a higher quality lab and pay more $$$ only when needed.

    Thinking outside your idea: randomly waking up freaking out could be anything from:

    Psychological - Stress can affect out subconscious and commonly our dreams that effects CNS.
    Low bood sugar - Many PWME report episodic random low blood sugar events, or 'like' events.
    Partial seizure disorder - would abate on it's own. Subsets of ME sufferers have partial seizures or epilepsy.
    Dysautonomia - Common in ME sufferers. Wouldn't last for hours unless you 'join' in via an anxiety response.
    Pheochromocytoma (if high BP/Tachy/Chest pain is involved) - Very rare. Needs a 24hr urine test to rule out.

    From what you describe i'd exclude central sleep apnea as once you're conscious your oxygen/co2 would quickly return to normal even if you had any problems in your sleep breathing, it wouldn't last for hours afterwards or present as an adrenaline/sympathetic nervous system 'rush' type feeling for hours wide awake, in fact the only one's that could do that on my list above are:

    Hormonal depletion/rare metabolic disorder where you are deficient in glucose, or producing exess hormones.
    Psychological: explained above
    Dysutonomia: if then triggering an anxiety response: unfortunate loop of abnormal CNS symptoms - stress response- amplifies CNS symptoms.

    It is possible to have a partial seizure lasting a long time, but again in my experience this wouldn't usually be consistent events in terms of what you describe and would likely occur in other scenarios,not just in bed, and would have other symptoms suggestive of having had one, afterwards.

    If you have funds and ability, try and get a sleep study if you have 'unexplained' bizarre symptoms that are waking you up that cannot be explained through simple conventional means.
     
    Theodore likes this.
  4. wondrous

    wondrous

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    Hey @aaron_c, thank you so much for your response and corroborating my hypothesis.

    I would love to incorporate some more "high thiol/sulfur" foods in my diet -- I know I could use the nutrition -- but because of the morning fight or flight response I've been having, I've been doing "low thiol/sulfur" according to Cutler's list.

    Do you think that I could add 1 or 2 "high thiol/sulfur" foods to my diet, take molybdenum, and not deplete copper levels and reduce excess sulfur at the same time? I'm thinking kale and eggs. :p
     
  5. wondrous

    wondrous

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    Hey @Research 1st, thank you for your input! I would love to test for sulfur, but I have no idea how to go about doing that. I did those sulfate test strips, but trying to decipher sulfate levels with the monochromatic color chart provided was damn near impossible.

    Any alternatives for a clear and explicit sulfur test?
    Thanks for the additional possible culprits! If bringing down suspected sulfur doesn't work, I'll look into these.

    I honestly feel my adrenals are not working the way they should and that could definitely explain a lot of my symptoms. I will be seeing an endocrinologist in a couple of weeks, so I should have that area covered.
     
    Research 1st likes this.
  6. aaron_c

    aaron_c Senior Member

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    I take a whole lot of molybdenum--1.5 mg per day, more than most people--and I haven't become all that copper deficient. A little bit, but I think that's more to do with (partially genetic) problems with metallothionein (storage protein for both copper and zinc), so until that gets fixed I will always be a little deficient in either copper or zinc.

    You can test for copper deficiency with a hair mineral analysis. Although there will be some situations where a hair mineral analysis might not accurately reflect your body's copper burden, most of the time it will be right, and it is still much more indicative than a blood or urine test, at least according to Andrew Hall Cutler. Also according to Cutler, when our bodies become copper deficient we absorb more copper to compensate.

    To the extent that I think about sulfur in my diet it is wondering how I can add more. I have been eating a lot of eggs recently.

    If you decide to start taking molybdenum I would take it around night time (only because it might make you tired at first) and start with a lower dose and work up. I can tell when I have enough molybdenum because a certain kind of brain fog will lift as I take more--until I get to my ideal dose, when more molybdenum does nothing further for brainfog but does tend to cause some gout (it's quickly reversible--just take the dose back down).
     
    xena likes this.
  7. wondrous

    wondrous

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    Hey @aaron_c, what amount of molybdenum would you recommend for starting to remove excess sulfur and what brand?

    I did have a couple blood tests done that showed serum levels of copper were just under the reference range. This combined with the weird parkinson's-like symptoms I had one morning suggested the copper had been depleted too much when I was taking the molybdenum.

    I swear it's sulfur because I took molybdenum at one point when I first suspected the issue was sulfur and I felt damn near normal. With this new found evidence, I continued to take the molybdenum with my copper restrictive diet, but after having the parkinson's-like symptoms, I stopped the molybdenum.

    I know it was the molybdenum because it was the only thing I was taking at the time.
     
  8. aaron_c

    aaron_c Senior Member

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    Like I said, blood tests for copper are a pretty poor indicator.

    Why are you on a copper restrictive diet if you suspect you are copper deficient?
     
  9. wondrous

    wondrous

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    I suspect that I am copper deficient because of my reaction to the molybdenum on a diet that appears to be low in copper. I'm on low sulfur (for obvious reasons) and low sugar for candida overgrowth -- this really limited my options in obtaining adequate amounts of copper from food.
     
  10. aaron_c

    aaron_c Senior Member

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    I see. Have you tried supplementing with copper or eat copper-rich foods like sunflower seeds or almonds?

    I agree that it seems like molybdenum might be stripping you of what little copper you have, and if that is the case you probably shouldn't take extra molybdenum until the copper thing is cleared up.

    Or I suppose you could try taking molybdenum and copper in the same day, although probably not at the same time. I only mention this because copper might make your sleep issues worse, as copper is necessary for the production of adrenaline.
     
  11. wondrous

    wondrous

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    Yes, mushrooms, zucchini, and avocados. I'd love to have almonds and sunflower seeds, but I have negative reactions to them. I'm also thinking about taking a thorne multivitamin that has copper in it, but it also has b vitamins that may affect MTHFR, which I don't want to go after just yet.

    Doctor didn't want me taking copper supplements for the reason of getting too much.

    I am seeing my doctor in a couple of days and I'd like to throw a good plan her way that will allow me to bring down my sulfur with molybdenum, but keep copper levels from depleting.
     
  12. aaron_c

    aaron_c Senior Member

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    Good luck! I don't see much of a problem with taking copper supplements if you are deficient. It's just that most people don't need them and are more at risk of becoming copper toxic, as you probably know.
     
  13. wondrous

    wondrous

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    Thanks, @aaron_c! I really appreciate your help with all of this. You've been so helpful and insightful. :thumbsup:

    One last thing: Can you recommend a good lab to get a hair analysis for copper? How about a good molybdenum supplement?
     
  14. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi wondrous,

    Do you know about Wilson's Disease? Low ceruloplasmin and paradoxically, low serum copper, are observed in WD. Patients are both copper deficient and copper toxic at the same time. Parkinson-like symptoms can occur.

    If someone has too much unbound copper, plain molybdenum could, imo, make them feel worse by stirring it up, but not actually eliminating it. I experimented with molybdenum once to try and address sulfur/copper issues, and had an awful crash.

    This molybdenum based drug, in a better form, is used to treat WD.

    https://en.m.wikipedia.org/wiki/Ammonium_tetrathiomolybdate

    Did your doctor explain why you should not take copper?
     
  15. wondrous

    wondrous

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    Hey @antherder, thanks for the input!

    I've heard of Wilson's Disease but what you've told me is as much as I've ever learned about it. I would definitely consider Wilson's Disease, but my symptoms could definitely be passed off for the Lyme I have as well.

    How would you recommend testing for Wilson's Disease? What symptoms should I be looking for?

    Also, I've had normal copper levels before taking molybdenum. Plus, I've actually felt good taking the molybdenum until labs showed that my new symptoms could be caused by copper deficiency.
     
  16. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    @wondrous,

    Diagnosing/ruling out WD is really complicated...it's a genetic disorder that causes copper to build up in the liver, so most docs think of it only as a liver disease, but it has a neurological presentation and a psychiatric presentation too, because sometimes the liver spits excess copper into other organs, like the brain, so it can cause anxiety, depression, dystonia, all sorts of neurological symptoms, even though LFTs might be normal.

    The first tests usually done are 24hr urinary copper test - along with ceruloplasmin and serum copper - and also a slit lamp exam with an ophthalmologist to check for Kayser-Fleischer rings.

    Even someone with normal test results can have it though. A liver biopsy is the only real way to rule it out. NB: Ceruloplasmin is an acute phase reactant so can be falsely elevated when inflammation is present.

    I personally think that people can have unbound copper problems without having WD. (Eg, I think I have a malabsorption problem.)
     
  17. aaron_c

    aaron_c Senior Member

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    Doctors Data and Trace Elements Inc (TEI) should be fine. Analytical Research Labs might be ok too... But honestly I'm no too up on what companies are best these days. Over a decade ago Cutler used Doctors Data, so I suppose they would the first place I would look.

    I use seeking health molybdenum, but I'm not sure that they are any better quality than most other brands.
     
  18. Valentijn

    Valentijn Senior Member

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    No idea if you react to sulfur, but you can safely rule out CBS SNPs as a cause. There's no indication that the gene is capable of causing problems in that manner, and research into the specific Yasko SNPs contradict the claims that they cause sulfur problems.
     
  19. DeceptivelySlow

    DeceptivelySlow

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    I have no idea about the role of sulfur. Regarding your state when you awaken, there is more than enough data in my mind to conclusively prove a link to sympathetic neural pathways to the heart and your emotional state; certainly what you are experiencing seems to fit this. The point here being it seems very possible your emotional state is not causing the reaction; it is the SNS reaction causing your emotional state; I think this is poorly understood and generally overlooked. I know that doesn't help with the sulfur question; best of luck getting it under control.
     
  20. wondrous

    wondrous

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    Hey @Valentijn, thanks for your input! You know, that whole CBS thing is so confusing. I hear some people saying it's helped them, and then other people say it's complete hogwash.

    I would imagine, that as a doctor/researcher, Dr. Yasko has conducted research supporting her claims about the CBS regulation and sulfur (I've never seen it). What is it about her research, or lack thereof, that suggests excess sulfur has not be scientifically attributed to a CBS regulation?
     

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