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cfs and impaired sulphur metabolism

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by leaves, Mar 18, 2010.

  1. leaves

    leaves Senior Member

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    My detoxification does not work properly, testing revealed that my methylation pathway is not the problem, something else is:

    I was recently diagnosed with a sulphuration problem; my sulphuration detox pathways are impaired. I think that this may be a problem for many PWC, therefore my story:

    My blood test indicate a Sulhoxidization / sulphur metabolism problem.
    Firstly I seem to have a problem with the pst enzyme ((phenol- sulfotransferase), this is suggested by my high DHPPA level.
    Secondly I seem to fail to transform sulfur in sulfate. This is suggested by my high cystathione and high Cysteine.
    My high cysteine shows I cannot make this step, it transforms in the toxic cysteine. I also have low glycine and L-histidine, these are required for this sulphur metabolism.
    This sulphoxidation problem may well be responsible for many my food intolerances for foods that contain salicylate and also my chlorine intolerance (this is a pst inhibitor). For information see http://www.newtreatments.org/fromweb/sulfur.html (NOTE: THIS IS VERY HARD TO READ, I TRIED TO SUMMARIZE IT (+SOME ADDITIONS )IN POST #8)

    Treatment: take glycine, topical epsom salt cream, natural vitamin A (cod liver oil), and vitamin K2 to help sulphuroxidization. Avoid salycilate rich foods and in particular banana and chocolate as these are PST inhibitors.
  2. dsdmom

    dsdmom Senior Member

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    Leaves,
    Interesting info. A couple of questions -
    1) Did you go over this with Dr. Klimas? If so, what was her response?
    2) Do you know how you react to MSM? Would this sort of sulphur metabolism issue mean that you would have unpleasant symptoms from MSM has suggested in another thread by RichVanK with regards to the methylation pathyway?

    Thanks!
  3. leaves

    leaves Senior Member

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    Hi dsdmom,

    No I did not go over this with Klmas (did mention it, but was not the focus), did not have time for it. The other dr that treats me is an expert in methylation and detox (he works for autists mostly) and did those tests. I don't know how I react to msm, never tried it. However given my low PST enzyme I predict it would be bad for me. Probably xmrv in a combination with a sensitive/faulty detox system are major agents in cfs
  4. ukxmrv

    ukxmrv Senior Member

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    Thank you very much Leaves, for posting this!

    I've got a problem with sulfur rich foods and with chlorine. Not able to afford any testing right now. Printed off that link you posted and I'll work my way through it. I have also been keeping an eye on the Yasko Rich VKB methylation work. An earlier test did say that I have a mutation of one of the MTHFR genes.

    (Much worse with MSM) (XMRV+)

    I'll certainly try the treatment suggested.

    Good luck and thanks again!
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi leaves,

    Thanks for posting. I suspect I might have the same problem but don't really have the money for testing, but can you share where you got your tests done? I noticed that elsewhere you said you hadn't tried MSM. I have tried to take it in the past and it made me unbelievably ill. I kept reducing the dose, reducing the dose, but I still had major problems with it. People who I was talking to on the internet at that time encouraged me to keep trying. I got so frustrated I finally came to the belief that if a plane was flying overhead at 30,000 ft. and had some MSM on it, I will still get sick.:D OK, maybe not. I finally had to give up on it.

    In other threads I have discussed how much taking magnesium supplements have helped me. One of thre reasons I believe it has helped so much is that I am getting glycine from taking the magnesium glycinate combo.

    Are you taking the Kirkman brand magnesium sulfate cream? I tried to use it for a while, but found that magnesium oil (mg chloride) helps me more.

    Good luck,

    HW
  6. SaraM

    SaraM Senior Member

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    Hi Leaves,
    Is this test part of a panel done by a certain lab?
  7. leaves

    leaves Senior Member

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    Hey SaraM and HW: The test that my dr uses is the NutrEval Blood Test from Genova Diagnostics. This is a very extensive and good tests that tests for many things, including dhppa, glycine, histidine but also other amino acids nutritional deficiencies, detox impairments etc. I am sure there are also other tests that do this, but I am very happy with this one; it gave me a much better understanding on how my body functions.
  8. leaves

    leaves Senior Member

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    extensive summary/ my treatment plan

    This is the treatment plan I made. I hope this may help those of you who also have impaired sulphur metabolism. I am not saying you need to do all of this, just some guidelines maybe?

    My test indicates that I have 2 problems
    1. Too little PST (as illustrated by DHPPA ).
    PST (phenol- sulfotransferase) is a Phase II enzyme that detoxifies leftover hormones and a wide variety of toxic molecules, such as phenols and amines that are produced in the as well as food dyes and chemicals.
    2. Failure to transform sulfur in sulfate.
    My high cysteine shows I cannot make this step, it transforms in the toxic cystine.

    Some of The Consequences
    1. Toxic cysteine
    2. glucosaminoglycans (gags) in the gut are very under sulfated
    3. No detox
    4 problems fighting infections

    Solutions

    Increase PST
    • Avoid to inhibit PST by avoiding chocolate, bananas, orange juice, vanillin, and food colorants such as tartrazine, cheese (tyramine), apple juice citrus fruit juices, and paracetamol (Tylenol™). Many coloring materials, whether of natural or synthetic origin, possess phenolic groupings. Phenol, an organic compound, has other names such as hydroxybenzene. Compounds such as flavonoids (red wine and citrus fruits), aged cheese, beers, and strong odors inhibit PST It should be noted that many multivitamin supplements, grapeseed extract, Pycnogenol™, Quercetin, and other antioxidants contain high amounts of flavonoids. One can also try a salicylate free diet such as the failsafe diet (see for example http://www.plantpoisonsandrottenstuff.info/content/failsafe.aspx). Salicylates block pst too and cause problems on its own. Make sure to watch that your beauty and bath products don’t contain salicylates (e.g. buy cleure products) especially your toothpaste (no mint etc) check http://www.reyessyndrome.org/ for products free of salicylates.

    More sulfate
    • Sulfate is the most oxidized form of sulfur. It doesn’t need to be oxidized any more, so supplementing or bathing in sulfate supplies what is lacking because of the body’s inability to oxidize the sulfur in foods. Epsom salts one may supply both the minerals and the sulfate needed to detoxify phenols and other metabolites. You can put them in your bath or make your own Epsom salt cream (for a recipe see http://www.enzymestuff.com/epsomsalts.htm)

    Repair GAGS/ gut healing
    1. Vitamin A deficiency has been shown to produce an accelerated turnover of GAGs as well as their undersulfation. Natural Vitamin A (cis form) is important for activation of T and B cells for long-term immune memory to develop, and it is necessary for optimal Natural Killer Cell function, Cis Vitamin A can bypass blocked G-protein pathways and turn on central retinoid receptors. Buy for example Country Life Natural Vitamin A -- 10000 IU - 100 Softgels
    2. iron, and the B-complex are important too
    3. Glucosamine/chondroitin sulfate (stimulates synthesis of the GAGs ). Oral sulfate will be poorly absorbed; so, supplement a gram or more of sulfate each day Some will get through. Supplementing papain enhances absorption of sulfates.
    When glucosamine gives up its sulfate, it supplies glutamine.
    Chondroitin is comprised of N-acetyl-D- galactosamine and D-glucuronate. Collagen Type II™ may be even better for it supplies at least 50 other types of sulfate such as heparan, keratan, and dermatan sulfate. If the word “hydrochloride” or “N-Acetyl” appears anywhere on the label, do not buy it Remember to choose capsules instead of tablets. (I take TriMedica Chrondroitin 400 mg Glucosamine 500mg -- 60 Capsules
    $17.01).


    Enabling Transforming Sulfur to sulfate (i.e. oxidization of sulfur)
    1. B-vitamins, especially vitamin B6. (I need the special form p5p, be careful not to take to much (>50mg) if you have an oxalate problem)
    2. By supplementing molybdenum and histidine (to oxidize sulfur)
    3. SAMe (SAM) is said to improve sulfoxidation, in fact, it is necessary to the manufacture of all sulfur-containing compounds in the body.


    Avoiding cysteine
    • no swimming in chlorinated water
    • Increase histidine; too low histidine likely causes a toxic build up of the amino acid cysteine, and a lack of sufficient taurine and sulfate contributing to the PST problem. I don’t take histidine because I have immune troubles and the xmrv.
    • Supplementing taurine, the sulfur containing amino-acid that is at the end of the metabolic chain, has been helpful in meeting this need for taurine; and, being the immediate precursor, may supply needed sulfates.
    • vitamin C (without flavenoids suc as rosehip!) is needed to prevent cysteine (which contributes its sulfur more readily) from converting to cystine, its oxidized form. If you have a oxalate problem, don’t take a lot vitamin c
    • Be sure to filter chlorine, fluoride, and other poisons from the water you drink and bath in. Do not buy a filter that uses silver as a bactericide The ShowerWise™ filter and shower head can be ordered for $69, plus two filters $129. They last about one year. An extension hose can be used to fill the tub with filtered water.
    • Until the body regains its ability to oxidize sulfur, it may be desirable to limit high sulfur containing foods (cruciferous vegetables, broccoli, onions, garlic, turnips, eggs, red meat, turkey, dairy products); and supplements like alpha lipoic acid, glutathione, L-cysteine, and N-acetylcysteine (NAC can be better tolerated when used with glycine and glutamine in ratio 2:1:1, and the B-complex vitamins. 500mg is usually tolerated. It should be tried for the glutathione it produces is so vital).

    * Often not enough bile is being made by the liver (indicated by ’pale’ stools). This can sometimes be improved by taking taurine, and glycine, and the overall condition can be improved by supplementing sulfates. This seems to be added reason to supplement L- histidine and molybdenum. Also take taurine if you have 'sandy' stools (indicates oxalate problem).

    All in all I think the epsom salt, good b vits, the glycine, natural vit a, taurine, molybdenium, salicylate free toothpaste and avoidance of pst inhibitors are most important, I take k2 for my oxalate problem.
  9. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi again leaves,

    Thanks for the summary and treatment plan - a lot to think about. Now if I could just rob a bank to get all the testing I want done. Sigh.

    HW
  10. Countrygirl

    Countrygirl Senior Member

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    Leaves, :Retro smile:

    I want to say a big thank you for your brilliant information. I wish I had known all this 30 years ago because it makes so much sense of many problems I have had.

    One thought, do you think that this is a common problem in CFS/ME, especially as I have read that it is found in about 90% of those with autism? I was particularly struck by your mention of red wine because in the early years of ME more than 90% of people are intolerant to it. Could this be the reason, I wonder?
  11. leaves

    leaves Senior Member

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    Ha I am so happy that this info helps so many of you! Countrygirl: Iwould not be surprised if many of cfs people have this, possible also that it causes red wine intolerance.
  12. IntuneJune

    IntuneJune Senior Member

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    Leaves, I started to read your link, but got bogged down mentally....just wanted to ask, what symptoms did you have because of this problem, (I know, hard to sort out but) and how were the symptoms helped, what improved.

    Thanks, June
  13. leaves

    leaves Senior Member

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    Hi June,
    I totally understand; it took me ages to read it. I summarized the relevant parts of the article in my post #8, so you dont have to go through it (although I left out the technical stuff). I just was diagnosed recently, so i have not started the treatment yet. I did start the supplements last week, but have not been avoiding sallicylates as they are in many supplements I still take, finishing the bottle. So too early to tell... Also because it is a detoxification protocol I suppose it will take a while before you see effects. I will keep you posted on my progrees though. For me the symptoms of sallicylates (e.g. mint, some rice types) are drop in blood pressure/fainting, tired, skin rashes. Symptoms of pst inhibitors such as chlorine or a lot of chocolate are tired,feeling toxic.
  14. leaves

    leaves Senior Member

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    Hey HW
    I use Kirkmans cream yes, but I want to start making it myself as that is cheaper and kirkmans cream contains parabenen. Magnesium is good for a lot of stuff, especially if you have an oxalate problem (which is in buckwheat, almonds, olive oil) but don't know what it does for pst. Also strange you like a chloride form better ? Or is that not related to chlorine?
  15. IntuneJune

    IntuneJune Senior Member

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    Consequences

    The only thing I could relate to under consequences in post #8 was trouble fighting infections. I don't fight infections due to a depressed immune system and cannot fight.

    The other three, since I have not had that type of testing, I do not know what my symptoms would be except I do feel toxic and am tired. I stay on 1200 calorie intake a day and still have problems with my weight and I am hungry most of the time. I have a very heathly diet.

    I sense that my body is holding onto "stuff" that it should be able to get rid of....... a vertical mobile landfill.

    Or this is me rationalizing my weight gain......

    My therapy for pain is working out in the water, so the chlorine would be a biggie for me, so I hope I do not fall in this subset of folks.

    Thank you for your help. June
  16. leaves

    leaves Senior Member

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    Hey June,

    Dont worry about it; I think you would have noticed if you were chlorine intolerant. Cheerio.
  17. IntuneJune

    IntuneJune Senior Member

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    Hmmmm is it a rash?????? If I remember correctly the article mentioned behavior changes in the autistic child. I have met some folks who cannot tolerate pool water though due to a rash.

    The only sweet I have been allowing myself is slices of bananas with chocolate sauce topped with slivered almonds. Everything you mentioned??

    On a weight loss site, to help with belly fat, which I have, it mentioned eating cruciferous veggies, so I was going to up those, only to read here to stay away from those....cannot remember why.

    I am chasing my tail.........June
  18. Countrygirl

    Countrygirl Senior Member

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    Hello June,

    I didn't know know that I had problems with chlorine until I was sent for hydrotherapy to help ease my arthritis. I was very careful not to exercise beyond my very restricted limit, but the reaction was so severe after every one of three sessions that I had to cancel my treatments. I found that my brief time in the water left me feeling so unwell and with such heart problems - erratic beats accompanied with the sensation that the heart hadn't the energy to keep functioning....that I could do nothing but lie on my front (eases the chest discomfort) for days after. Strangely, a close relative who does not have ME experienced the same problem after hydrotherapy, so it must be a genetic zlitch.

    I didn't get any rash. I have always been puzzled why just spending a short time in a pool doing very gentle exercises could have such a major impact. Thanks to leaves, perhaps I now know.
  19. IntuneJune

    IntuneJune Senior Member

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    Thanks Country Girl,

    I recently had foot surgery so am basically non-weightbearing on the right foot and am not allowed in the pool. I wanted to get into the pool and do gentle heel-ball-toe walking at chest depth which would unload 80% of my weight but the surgeon said no. Not yet.

    Usually I am in the pool three times a week for pain reduction. It is what works for me.

    Guess I am ok on the chlorine then........

    So if you have a problem with the chlorine do you then have the rest of the problems Leaves mentioned?

    June
  20. ukxmrv

    ukxmrv Senior Member

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    I have nausea and vomiting after chlorine plus a general all over weakness with an "ill malaise". If I am in a pool I also get post exertional problems. The chlorine reaction is faster and more general.

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