1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

The Undetectable Infection

Discussion in 'General ME/CFS Discussion' started by Elph68, Nov 30, 2013.

  1. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,734
    Logan, Queensland, Australia
    As a side point, quite a few years ago I tried to interest a local pathology group to look at a hydrogen sulphide test. No interest.

    I am not convinced hydrogen sulphide is the cause, or even a cause. I am convinced there is enough there to investigate further. What is very likely though is that hydrogen sulphide is an important contributing factor. For that alone it needs to be investigated.

    I would like to reiterate that most pathogens implicated in triggering ME can infect both gut and B cells. This is probably important.
    MeSci likes this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,261
    Likes:
    1,628
    London
    It sounds like the test Professor KDM developed with HS didn't work out. There were ME patients who bought the test and for their families and got unexpected results.

    I'm not even sure if he concentrates on this as a test and treatment for patients now.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,722
    Likes:
    2,965
    Cornwall, UK
    Sorry if you have said this already, @alex3619 but which gut cells get infected by the same pathogens as B cells? Human gut cells or gut flora? A link to where you have already said this would be fine! :)
  4. globalpilot

    globalpilot Senior Member

    Messages:
    575
    Likes:
    191
    Ontario

    When I did a fair amount of googling recently to see how hydrogen sulfide was tested in the human body I found a lot of references to testing urine thiosulfate or serum thiosulfate. If it were as easy as testing H2S in urine , there would be no need for a thiosulfate test.
    It upsets me somewhat as I relied on his urine hydrogen sulfide test to rule out an overgrowth of hydrogen sulfide producing microbes.
  5. alex3619

    alex3619 Senior Member

    Messages:
    6,648
    Likes:
    9,734
    Logan, Queensland, Australia
    I don't recall details, but I meant human gut cells. These are gut infections, probably gut lining, including entero-viruses. There was a paper a couple of years ago discussed on PR that reviewed this.
    Adlyfrost and MeSci like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,722
    Likes:
    2,965
    Cornwall, UK
    I'm a bit confused now - you said you had got funding for a PhD, then you said you thought you could fund it, then this message says you are going for an Hons in microbiology.
  7. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    Sorry MeSci for any confusion .... Two different degrees ... I am taking the microbiology option .... And I am only eligible for honours first.
  8. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    It is highly likely there are sub groups and variations but I believe in at least half of all cases the problem is purely bacterial ... So that is the area of my focus.

    This is a small study on H2S being identified/suggested as the cause of encephalopathy

    http://www.momsforcleanair.net/uploads/HS_Exposure_Study.pdf
  9. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    It seems that it is nearly impossible to detect with current tests ...
  10. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
  11. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    I have been doing a little self testing which I will now put here.

    I have burning eyes, nasal passages, tongue, mouth and throat. I also have bouts of geographic tongue. I have always said this was bacterial, and now I can argue stronger.

    I got some 35% food grade hydrogen peroxide and placed some drops in various parts of my mouth. The areas in my mouth that burn do not show any signs of a coating and are red ... But don't appear to be inflamed as such. When the drops hit the red part (tongue in particular) nothing happened, there didn't even seem to be any change in the pain severity. The other parts had the normal reaction and became frothy and burned.

    This suggests that the burning parts of my tongue are inhabited by catalase negative bacteria. Catalase negative bacteria produce hydrogen peroxide and can also produce hydrogen sulphide. Hydrogen sulphide at low levels causes mucosal inflammation and in more concentrated levels causes lesions such as mouth/tongue ulcers.

    The next thing I have noticed is a lot of the time I can't smell my own flatulance, yet according to bystanders, they are pretty rough. And a couple of weeks ago when I was on a farm, I went past a silage pit (fermenting grass for dairy cows) and again I could not smell the odour coming from the pit, much to the amazement of the people I was with.

    Low level hydrogen sulphide poisoning through the nasal passages (burning nasal passages) causes immunity to the smell of hydrogen sulphide. I know my gut is full of hydrogen sulphide producing bacteria, therefore my flatulance is mainly hydrogen sulphide, and silage (fermenting grass) produces hydrogen sulphide. I am unable to smell it, therefore I am being chronically poisoned by it.

    Therefore I can deduce that my burning mouth, nose and eye irritation is caused by low level hydrogen sulphide exposure from hydrogen sulphide producing bacteria.

    The undetectable infection .....
    Asklipia, Wayne and merylg like this.
  12. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    Just further MeSci ... I am trying to figure out the best approach .... I have a lot of data and I am looking for the right mentor.

    I am meeting with an infectious disease specialist, who is an immunologist, to discuss what tests we can do to start proving this theory......
    RL_sparky likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,722
    Likes:
    2,965
    Cornwall, UK
    I don't think that many of us are insensitive to smell. I'm certainly not. Many of us are actually hypersensitive to inhaled chemicals (which is what smells are - or rather the interpretation of them by the brain).

    So maybe you can't generalise from your own experience. Maybe your illness is different from that of most of us.
    Aileen and Valentijn like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,722
    Likes:
    2,965
    Cornwall, UK
    Sorry but what does that mean?
  15. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    Hi MeSci, could also be that I am in the early stages and still developing, where most others here are long term and the damage done to the olfactory nerve is substantial resulting in the hypersensitivity ....
  16. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    I have to do an honours year (mini thesis). That is what I am trying to sort out.

    I am sitting on the fence... A treatment program using phages/abx or fill in some research gaps with regards to lymphatic transposition and opportunistic H2S/H2O2 producing bacteria ...
  17. globalpilot

    globalpilot Senior Member

    Messages:
    575
    Likes:
    191
    Ontario
    I just finished reading the paper in it's entirety. I do think it would be prudent to get the thiosulfate in urine tested. I"m going to ask my doctor to do this when I see him in 2 weeks. This is something that has been overlooked so far in the SIBO world. This paper (only 5 cases) shows that in non fatal cases only thiosulfate and not sulfide was found in the urine. http://www.ncbi.nlm.nih.gov/pubmed/9274948
  18. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    Hi Global, you may have just identified the basis of my research project ....

    May need a series of tests, with or without the consumption of sugars .....

    Cheers.
  19. Elph68

    Elph68 Senior Member

    Messages:
    351
    Likes:
    154
    Some of you may find this very interesting ...

    http://emedicine.medscape.com/article/815139-workup

    Hydrogen sulphide poisoning causes uncompensated metabolic acidosis and basal ganglia lesions .....

    Hydrogen sulphide poisoning also causes severe muscle cramps (pain) ...

    Measurement of sulfide and thiosulfate levels is more appropriate for the evaluation of low-level chronic exposures.

    This is what we need to be tested for ... Well done Global :)

    Now I will start making a noise ....
    Last edited: Jul 9, 2014

See more popular forum discussions.

Share This Page