Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

I get chills for 2 weeks after a single attempt of killing gut microbes

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Lolinda, Aug 17, 2016.

  1. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    Hi, does anybody have the same? What would you do against this?
    If I do just a single attempt of killing microbes in the upper gut, I get chills for 2 weeks or more. My skin remains warm, no cold limbs at all, no temperature change at all, but I feel so cold that I need 3 pullovers in hot summer.

    I summarize here what I know:

    Killing of microbes can be just anything, for example:
    • taking nattokinase: does not kill microbes directly but disrupts their biofilms. -> So I know they live in biofilms. And I know they are already in the stomach because the problems start already after 15 minutes
    • Largely any probiotic
    • Eucalyptus oil drops (I dilute them in olive oil for safety).
    • Some things that strengthen my immune system
    Before I got sick, my reaction to probiotics was normal. Nothing, or a little herx, like a flu. And various beneficial effects. Then it became more and more these chills. As of today, I stopped any probiotics completely, they only cause harm. I also stopped any attempt to kill these beasts because it kills me more than them... :eek: Still, I would like to strenthten my immune system and get healthy.

    What helps:
    • running for 15 minutes makes it go away for 1-2 hours
    • hot sunshine for half an hour makes it go away for some 3h
    • during the day it is usually much better, at night worse. But sometimes its better at night
     
  2. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    Gondwanaland likes this.
  3. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    Another possibility: killing gut microbes (gram-negative) causes a bout of LPS (= endotoxin), because the cell walls of those bacteria are densely populated with LPS.
    Now, this research says that in non-alcoholic steatohepatitis there is increased LPS sensitivity:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3676404/?report=classic
    "We found that CD14 overexpression resulted in a hyper-responsiveness to low-dose lipopolysaccharide (LPS)"
    Now, a reaction to LPS is typically chills. And patients with LPS have warm skin. I do not have any elevated LPS, but may have a hyper-responsiveness: my sCD14 is hugely elevated. The usual other causes of this are excluded in me.
     
    Last edited: Nov 4, 2016
    nandixon and pattismith like this.
  4. frederic83

    frederic83 Senior Member

    Messages:
    204
    Likes:
    175
    France
    Just an assumption: if it is not a bacteria and that your attempt to kill this non existent bacteria is making you worse ? I tried the probiotics and some enzymes, but never felt well on them.
     
    Lolinda and Gondwanaland like this.
  5. IreneF

    IreneF Senior Member

    Messages:
    1,508
    Likes:
    2,396
    San Francisco
    I don't know if nattokinase will help you. Natto--a Japanese food made from soybeans fermented with Bacillus subtilis bacteria--may have beneficial effects on your microbiome. It also has a lot of vitamin K in it. Enough so that you shouldn't eat it if you are on blood thinners.

    It's a fermented food, like yogurt or sauerkraut, so it should not have adverse effects due to over-concentration. It just tastes really strange and is hard to find outside of a Japantown.
     
    Lolinda likes this.
  6. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    I like your thought. But what is it then? If I do nothing, I have these:
    - do not tolerate any carbs, a single meal with a little carbs makes me constipated and sickish and low appetite (malabsorption and diabetes are excluded and nothing wrong in gastroscopy)
    - I do not tolerate choline and carnitine.

    All these three things are well-known energy sources for intestinal bacteria and all the three are intolerable to me. To me this sounds like there must be bad bacteria. But, I am very interested in any alternative ideas.
    And, while it is certainly possible that there are no bad bugs, there must be some extreme difference: When healthy people take nattokinase, a little eucalyptus oil or probiotics, they do not get chills for weeks. I do.

    "due to overconcentration" is a smart argument! Unfortunately, in me, even fermented foods like sauerkraut does not work (selfmade pickled broccoli very lightly fermented for a few days is the only thing I can handle). But overconcentration is a great explanation for why I am so much worse on probiotics than on fermented food! thanks!

    I generally love strange fermented tastes :) :)
    Unfortunately, 100g of natto have 14g carbs which is far too much for me, need to eat zero carb ketogenic diet. And nattokinase does not work either, it is exactly one of the things that gve me weeks of chills.
     
    Last edited: Dec 22, 2016
  7. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,438
    Likes:
    3,396
    From my own experience it sounds like salicylate intolerance. I think through the keto diet you are dumping uric acid (or your liver is endlessly producing it which is plausible since I suppose this diet accelerates B2 metabolism - it puts you in a hyperthyroid state). While there is uric acid mobilization there is salicylate intolerance. Sorry, no research to back this up. But you could look into symptoms of salicylate poisoning to see if some of them match.
     
  8. frederic83

    frederic83 Senior Member

    Messages:
    204
    Likes:
    175
    France
    It sounds like an infection with an inflammation of you GI track, I doubt it is a bacterial problem. Do you have IBS, SIBO, or another condition ? When I eat carbs, I'm not well neither, more fatigue and it tends to depress me. I have IBS-C. I follow a keto-paleo diet, so I don't stay in my bed all day long. Do you have problems with fruits ?
    Nattokinase supplementation was killing my gut, I had much more inflammation on it. Moreover, I'm much worse on probiotics, prebiotics, antibiotics... So I gave up the good and bad bacterias, leaky gut theory in my case. I know I have this, dysbiosis and leaky gut at some point, is it the cause or a consequence ? I think it is a consequence.

    I like miso soup and sauerkraut. Unfortunately, I can't tolerate them anymore. I eat a few pickles once in a while, though. I never ate natto but it looks so strange that I would love to eat it !
     
    Lolinda likes this.
  9. IreneF

    IreneF Senior Member

    Messages:
    1,508
    Likes:
    2,396
    San Francisco
    Natto is strange and stringy.
    [​IMG]
     
    Jennifer J and Lolinda like this.
  10. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,438
    Likes:
    3,396
    OMG ewwwwww :eek::depressed:
     
  11. frederic83

    frederic83 Senior Member

    Messages:
    204
    Likes:
    175
    France
  12. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    Hey guys!! I wish you all a nice Christmas!

    Your interest in this thread makes me happy :) . And its great help in resolving problems: In fact, it seems, I managed to take a little raw (live) sauerkraut. For the first time since I am sick, I had more good than bad effects!! :balloons::cocktail::cocktail::tulip::bouquet::music::music::music::bow::balloons:

    What was the trick? Now, I red:

    The idea of over-concentration convinced me. So I did extreme low concentration. Never tried this before:
    • Took 1cm of raw fermented saurkraut sap at the bottom of a tea cup.
    • Drank it in small sips over the course of an entire meal.
    I will now resist the temptation to immediately do a next try. Then repeat it without some confounding factors, so I see the effects more clearly. In any case, it occurs to me that in addition to the small-sips-over-the-entire-meal strategy, the strong and pleasant parasympathic reaction I had may have sthg to do with agp-choline and lecithine I am taking since a while, (both transdermally, to prevent bad bugs from eating them, which is even in healthy people 60%. agp-choline➞acetylcholine➞parasympathicus, lecithin➞phosphatidylcholine➞good for liver➞...)
     
    Last edited: Dec 25, 2016
    Gondwanaland likes this.
  13. IreneF

    IreneF Senior Member

    Messages:
    1,508
    Likes:
    2,396
    San Francisco
    After about a week of eating it I got to like it. It's kind of like smelly cheese. Very umami.
     
    Lolinda likes this.
  14. IreneF

    IreneF Senior Member

    Messages:
    1,508
    Likes:
    2,396
    San Francisco
    I think eating actual food is nearly always best, unless a person is clinically deficient in something.
     
    Lolinda likes this.
  15. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    sad for me...: I had some doubts about the freshness of the sauerkraut-sap. Maybe all the success was because the sauerkraut sap did not contain any live bacteria any more. So I retried the same experiment as above: buy new fermented sauerkraut from the shop, distribute a tiny amount of sap (about 1 spoon) over a meal. Got the same issues as ever before: chills and flue-like feeling :( :(
    So sad... I had already envisioned myself treating my SIBO using sauerkraut....
     
    Last edited: Mar 20, 2017
  16. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,438
    Likes:
    3,396
    I wonder if it could be histamine related
    Edit - or Tyramine
     
    Last edited: Mar 19, 2017
    Lolinda likes this.
  17. pattismith

    pattismith Senior Member

    Messages:
    313
    Likes:
    422
    @Lolinda , did you try Charcoal, (it blocks endotoxin from bacteria of the small intestine)?
    You could do a test with a big amount one morning....

    Had you D lactates tested?
     
    Lolinda and ljimbo423 like this.
  18. Lolinda

    Lolinda after meals, I need to lay in bed for hours

    Messages:
    331
    Likes:
    455
    Thank you all on this thread for thinking about my issue! A new idea: There is such a think as losing tolerance to antigens from normal gut flora. This can happen after an EBV, which is exactly when this type of probs started in me.

    IMG_20170804_191521.jpg

    The above actually fits in a way both the ideas of endotoxin as well as "non-existent bacteria": that is, there are only normal gut bugs and they produce a normal amount of endotoxins (and more when I disturb them), but my reaction to them is abnormal.
    Why I am so interested in the possibility of an EBV-induced loss of tolerance: Just when the EBV struck me years ago, I developed strange gut complaints such as diarrhea from meat. Imagine this: I get the swollen lymphnodes, and then, I whenever I eat any meat, diarrhea. And the doctor diagnoses me with EBV and says that bowel probs sometimes come with the EBV and will go later. But in me they stayed and I had to be vegan for years. I only could eat meat again when I went on a ketogenic diet which is well known to deplete gut bugs (thus reducing antigens from normal gut flora a lot). How the meat intolerance ties in here is not entirely clear, but I have some immature first ideas such as:
    • the intestinal inflammation caused by the intolerance to normal gut flora drives up mtor in the gun. Meat and cheese contain more of the aminos (than plant protein) that drive up mtor even further ➞ diarrhea
    • I vaguely recall that enzymes digesting proteins can disrupt the protein crosslinks of the bacterial biofilm matrix ➞ gut bugs come out of their hide

    Now, the big question: Has anyone ever heard about such an EBV-induced loss of tolerance towards normal gut flora? Any more references, links, whatever?
    I believe this may be relevant for many people here on PR as variousest problems such as CFS or autoimmunity are linked to EBV, and intolerance to normal gut flora may add a piece to the puzzle.
    Before, my digestion was not perfect, I easily got diarrhea, but I did not have to chose between keto or always diarrhea when I eat meat, and I did not get chills from probiotics or killing gut bugs either.

    (btw D-lactate was normal. I tried charcoal with killing gut bugs, but still got the same chills... Also I had 3 leaky gut tests done: LPS in blood, procalcitonin, and even the scientific-grade test: antibodies to LPS of gut bacteria. Also my IL-6 was always normal, indicating absence of systemic immune activation. My conclusion from all this is that LPS apparently does not enter my blood (?) and I have no leaky gut (?). The immune reaction apparently happens entirely in the gut: gut epithelial cells and immune cells in the gut react to LPS. Maybe the vagus nerve picks it up from there.... and so I feel the chills?)
     
    Last edited: Aug 14, 2017
    frederic83 likes this.
  19. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,438
    Likes:
    3,396
    I am sorry I don't have any insights to your specific questions.

    However, during my latest uric acid flare I had severe chills during the whole night and had to sleep with my electric mattress pad turned on. After I started supplementing with glutamine the chills went away.
     
    Lolinda likes this.
  20. frederic83

    frederic83 Senior Member

    Messages:
    204
    Likes:
    175
    France

See more popular forum discussions.

Share This Page