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The H2S Test Poll Part I: ME/CFS Patients

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Cort, Jul 10, 2009.

?

I Have ME/CFS and I've Taken Dr. De Meirleirs H2S Test. My Results Were (Drum Roll)..

  1. Negative: the solution did not change in color

    8 vote(s)
    13.8%
  2. Moderately positive: the solution had a light yellow-green to light green color

    11 vote(s)
    19.0%
  3. Strongly positive: the solution had a strong green to blue color

    39 vote(s)
    67.2%
  1. Cort

    Cort Phoenix Rising Founder

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    Dr. De Meirleir announced last month that hydrogen sulfide gas - in combination with heavy metals and/or bacteria - played a key role in chronic fatigue syndrome and that he's developed a cheap test for hydrogen sulfide metabolites in urine. Find it here.

    If you've taken the test take the poll and tell what happened.
  2. LaurelB

    LaurelB Senior Member

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    H2S Test

    I took the test a week or so ago and got an immediate strong positive. It turned a dark green/brownish color instantaneously, and was pretty much black by the 3 minute point.

    I am about a 0-10 on the Bell Disability Scale (bedridden).

    I have had comprehensive digestive tests in the past and they were always pretty much normal, and I have no real digestive symptoms. It's always been the one system that still seemed to be working for me, so I am not sure what to make of it.

    The lab doesn't really say what the next steps are if you are strong positive, so I am not sure how to proceed. I did read Cort's post on this with the naturopathic doctor, which I found helpful, and have already ordered the probiotic he suggested.

    Anyway, I'm very curious how others do on the test!
  3. Cort

    Cort Phoenix Rising Founder

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    I'm going to take it as soon as I get some money but I fear - I really fear - that I will not be positive. My health is definitely better, I'm exercising (walking) a good deal more without flaring. My IBS has gone down considerably, I'm even sleeping a bit better. it's all due to this kind of intense mindfulness work I'm doing - watching what's triggering my symptoms, etc.

    I know of two other people have taken the test - both were positive - both gave it to a friend - one was negative but I don't know about the other one.
  4. LaurelB

    LaurelB Senior Member

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    Cort,

    I posted about this on another site awhile ago and was contacted by someone with pretty severe CFS (possibly bedbound, but I can't remember for sure) who was negative. So, I'm not sure if this test will be a very accurate measure of illness severity in the end, or even a diagnostic tool. So even if you are negative, it wouldn't mean you don't have CFS. But it would mean that it's one less thing you have to worry about/deal with, which is a good thing! :)
  5. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    I know 2 people here with ME/CFS. Both tested positive.
  6. tag

    tag Guest

    Cort,

    I took DeMeirleir's test and had a "moderate to severe" result. I have not had any treatment for this condition as yet.

    I believe that I have had Chronic Fatigue Syndrome my whole life and that it has progressed steadily over the years. I had an absolute killer systemic yeast infection in my digestive tract for at least 25 years. I think it is interesting that yeast can also produce sulfur. (I didn't read about this phenomenon until today.) I can remember - 25 years ago - telling one of my doctors that my skin was emitting something that smelled like sulfur. He politely dismissed me like I was a nut.

    Even though I have the sulfur producing bacteria, my skin hasn't smelled like sulfur during the last 20 years. I started treatment for the yeast problem in 1984.

    Given the increase in knowledge about this disorder, the increased gut permeability, sulfur producing bacteria, sulfur producing yeast - and who knows what else is in there - maybe we don't look so crazy after all.

    At least today, we have been validated and we have a system of support in each other that did not exist until recent years.

    TAG
  7. Jody

    Jody Senior Member

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    Hi Tag,

    Welcome to the forums.

    Despite how frustrating and stymied we get now, it's true that it used to far worse for people with CFS, from the medical community, from people's reactions, from the lack of information available and from the isolation.

    There is a LONG way to go, but each of those areas have slowly improved. And access to groups on the internet has changed dramatically. Thank God. :)
  8. bettine

    bettine

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    urine test

    Hi all,

    I ordered two test kits for some reason, and did the test twice, with two weeks in between. The first test was somewhere between moderate and severe, the second one was slightly slightly coloured, and it could be either negative or slightly moderate.

    I have no idea why I tested differently from two weeks earlier.

    (So also don't know how to answer the poll! I guess one positive, one negative?;))

    Bettine
  9. Jody

    Jody Senior Member

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    Hi Bettine

    Good to see you here. :)

    Welcome to the forums.

    Disappointing and confusing, eh? So many things connected with CFS give unclear results.

    Do your results tell you anything at all that might be helpful?
  10. bettine

    bettine

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    Hi Jody!

    good to see you here, too!


    I don't know about the results, I suppose even though the second test was maybe positive/maybe not, for me it confirmed that something is wrong. But then, I have known that for years ..........

    I doubt whether I will go to Brussels (De Meirleir). I just don't know. It would be very expensive, and very complicated getting there, and he might help me, and he might not help me. Many people are succesfully treated by him, and others aren't.

    So, haven't made a decision yet
  11. Jody

    Jody Senior Member

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    Hey Bettine!

    Are you up late or up early? It's almost 1:30 a.m. here, it is, what 6:30 or so in the morning where you are? So, ok, then it's early in the morning, right?:D

    I can understand your uncertainty about making such a trip when there are no guarantees of success. Alot to think about.
  12. bettine

    bettine

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    Hi there,
    it is 7.30 in the morning here, and having my first cup of coffee .

    what's the time for you? very late at night I guess?
  13. Jody

    Jody Senior Member

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    Yup, getting on toward 2 a.m.

    I'll be going to be soon. :)
  14. Lisa

    Lisa Senior Member

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    Looks like I'm the only sane one here in regards to what time I'm up right now! :p hehehe

    It's just past 11 pm, not super late like Night Owl Jody and not crazy early like a.. um.. like early bird bettine! Hmm, anyone know of a good critter that gets up early (besides Bettine of course). hehe :)

    Its time for bed for me!

    Night all! lol
    Lisa :)
  15. bettine

    bettine

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    Sleep well, Lisa!
    Bettine
  16. jam338

    jam338

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    Cost of Test? (US$?)

    can someone please post on cost of test? thanks?
  17. bettine

    bettine

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    Hi JAM,

    the test costs 15 euro, that is appr. 21 dollars, shipping costs to the U.S. are 7 euro, appr. 10 dollars.

    On this website you'll find more info about the test:

    http://www.proteabiopharma.com/

    It might be the test is available somewhere in the U.S., I don't know about that.

    Regards,
    Bettine
  18. Jim

    Jim Senior Member

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    negative?

    howdy,

    i thought i would post that i took the test and my urine did not change colors, though it was about the color of the third reference on their chart (moderate) before even adding it to the reagent. not sure what that means. i will send a note to the lab and see what they say.

    also not sure if this is good news or bad, as if my results are considered negative, that is 1 less possible treatment path that i could have pursued. but on the plus side i guess it's kind of nice to know i probably don't reek of sulfur, ;) tho i would gladly smell of the stuff if it meant i could have something to fix and thus get better.

    it's always interesting on what to hope for with test results. if it's something potentially fixable and/or not too ominous, i always root for being abnormal.

    will get back if i hear anything useful from the lab.

    cheers,

    jim

    ps great forums here.
  19. Jody

    Jody Senior Member

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    Hi Jim,

    Welcome to the forums. Glad you like it here. :)

    I know what you mean, it's not that you particularly want to find that something is wrong, it's just that you'd like to find ... something. And then be able to do something about it.
  20. richvank

    richvank Senior Member

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    Correlation between H2S test and Epsom salt tolerance

    Hi, all.

    I want to ask for help in testing a hypothesis. Some of you have taken the hydrogen sulfide (H2S) urine color change test, and some of you know whether or not you can tolerate Epsom salt baths.

    I would like to know what the correlation is between the result of this test and whether or not a person can tolerate Epsom salt baths. (Note that some time ago, Susan Owens, the owner of the sulfurstories internet group, started a separate group about Epsom salt intolerance. We kicked this issue around a little there, but haven't reach any conclusions about what's going on in these cases. I think that this new urine test may provide some insight.)

    My hypothesis is that people who test positively on the H2S test do not tolerate Epsom salt baths.

    The rationale is as follows:

    The urine color change test gives a qualitative measure of the concentration of hydrogen sulfide in the urine. It has been suggested by Dr. de Meirleir that when the H2S level in the urine is high, it means that there are bacteria in the gut that are producing large amounts of H2S, so much that the normal sulfide oxidase enzyme in the wall of the gut is not able to oxidize all of it and convert it to thiosulfate, so that it passes into the blood and is then filtered out by the kidneys and excreted in the urine.

    If this is true, it must mean that there is a significant population of sulfate-reducing bacteria in the gut of a person who has a positive H2S urine test, since these are the types of bacteria that produce H2S.

    Epsom salt is composed of magnesium sulfate. As far as I know, there is no pathway in the human metabolism itself that can chemically reduce sulfate, and normal, healthy people are able to tolerate Epsom salt baths and to benefit from them, as their body absorbs both some magnesium and some sulfate through the skin. Both are normally found in the body and perform important functions. One of the functions of magnesium is to relax the muscles. One of the functions of sulfate is to help the cartilage in the joints to retain water, and thus to cushion the joints. Epsom salt can thus help both muscle and joint pain in a normal, healthy person.

    If a person is intolerant of Epsom salt baths, I think the reason is that some of the sulfate is chemically reduced to hydrogen sulfide by sulfate-reducing bacteria in the gut. Some of that is oxidized to sulfite by the human sulfur metabolism. Both hydrogen sulfide and sulfite are toxins if they reach high enough concentrations, and they will both produce unpleasant symptoms.

    So far I've heard from one person who tested positive, and three who tested negative, and all four are consistent with this hypothesis. Four is not a big number, and I would like to accumulate some more data for a preliminary test of this hypothesis.

    So I would appreciate it very much if those of you who have taken this urine test, and also know whether or not you tolerate Epsom salt baths, would post this information together. It would also be interesting to me to know what the symptoms were for those of you who did not tolerate Epsom salt baths, when you tried it.

    The purpose is to get a better understanding of one of the mechanisms of this disorder. Gut dysbiosis is a big factor in CFS, and the more we understand about it, the better position we will be in to correct it.

    Thanks very much.

    Rich

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