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...
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Interpretation of KdM results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Fritz18, Sep 10, 2016.

  1. Fritz18

    Fritz18

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    Hi, I am new. I have had CFS for 3 years now. It started after a throat infection and I have never had tick bites as far as I know. I have some of my test results back (see some of the results below from RED and Armin Labs) and am trying to get smarter before speaking to the doc next month.

    The high ammonia levels are consistent with my brain fog and muscle weakness. Then there are a number of elevated inflammation markers (in the brain and elsewhere). I read that high levels of quinolinic acid can cause depletion of tryptophan levels which depletes melatonin and serotonin levels.

    I am currently taking Zinc, Mg, HTP5, melatonin, omega-3, Glutathione, Resveratrol and 5mg Stilnox. I have been on a healthy diet and started drinking celery juice in the morning since that apparently helps relieve the liver/kidneys who are dealing with my ammonia.

    Any ideas / insights appreciated in what KdM may prescribe based on below.

    Thanks


    Ammonia in serum – 5.51 (0.28 – 3.03 ratio to normal median)

    CD57 – 58 (60 – 360 cells)

    Elastase expression – 246 (0-150)

    Prostaglandine E2 – 3.87 (0.3 – 2.06 ratio to normal median)

    Quinolinic acid – 1.52 (0.75 – 1.16 ratio to normal median)

    Soluble CD14 – 3254 (1430 – 2800 ng/ml)

    IL-1beta serum – 7 (0-3 pg/ml)

    IL-6S – 13 (0-5 pg/ml)

    IL-8S – 1416 (0-15 pg/ml)

    SeroEBVblotIgG – Positive (past)

    SeroEBVblotIgM – Negative

    SeroYERSIgA – Negative

    SeroYERSIgG – Positive

    1 Borrelia b. Full Antigen: 2 SI (< 2)

    1 Borrelia b. OSP Mix: 1 SI (< 2)

    1 Borrelia burgdorferi LFA-1: 3 SI (<2)
     
  2. frederic83

    frederic83 Senior Member

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    France
    Did he test you for other virus/bacterias?
     
  3. J.G

    J.G

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    To my understanding, QUIN is a neuroexcitatory agent that sits at the end of the kynurerine pathway. Certain inflammatory cytokines, as well as ROS, can induce this pathway's gatekeeper enzyme (IDO). Activation of the KY-pathway diverts Tryptophan away from the 5HTP-pathway where serotonin and melatonin are synthesized. See also here.

    5HTP, precursor to serotonin and melatonin, is supplementable and may or may not be beneficial. I'm not sure if doctors prescribe it, but it may be worth looking into.
     
    Fritz18 likes this.
  4. Fritz18

    Fritz18

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    Yes, I was also tested (negative or normal) for the following
    Babesia
    Bartonella
    Brucella
    Coxsackie
    ENTV
    FASCIO
    FILAR
    HHV6
    KYNA
    LEPTO
    MycoB
    MycoFERM
    SCHISTO
    TULAR
    VEGF
    Alternaria
    Aspergillus
    Candida
    Cladosporium
    Penicillium
    BB IgG / IgM
    Coxsiella
    Rickettsia
    NAGA
    Chlamydia (6 types)
    Toxoplasmosis
     
  5. Lolinda

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

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    Here something simple and harmless you can do against high ammonia: acetic acid (i.e. vinegar) neutralises it. This is so simple chemistry that no physician knows about it! :D
    (They know imo only the toxic expensive drugs that that pharma guy with the goodlooking suit and the big black suitcase advertises to them :) :( )

    just do this: go to a GP, let him prescribe you 3 ammonia tests.
    1. first blood draw
    2. drink 10ml vinegar well diluted in 2dl water.
    3. wait 15 min, then second blood draw
    4. wait an hour then third blood draw

    this way you will see the effect (first versus second blood draw), and the duration (second versus third blood draw).

    Question: was your ammonia test fasting?

    In any case, I suggest this: let your GP prescribe you a few more ammonia tests. Do the following study:

    First day:
    1. test fasting
    2. test 2h after a protein rich meal

    Next day:
    1. test fasting
    2. test 2h after a low carb, low protein, high fat, salad or cooked veggie meal

    Do everything else the same on these days. It would be best, if you would have the tests at the first meal both days. But if its unusual for you to eat protein rich or lowcarb-lowprotein-highfat-viggie meals for breakfast, then eat both days the same breakfast and have the test both days at lunch. Try to minimize any other differences of the days. And most of all, dont even think of soing the two tests on the same day. ,ylso, dont do the tests far apart. Do vthem oreferably on consecutive days.

    Compare the two days and see in which case the ammonia increase caused by the meal was higher. I bet you will get much more ammonia after the protein / carbs meal than after the veggie / fat meal. If it works out then the strategy is: Eat all meals high fat, low carb, low protein, high veggies/salad. Except one meal per day where you eat proteins, carbs, whatever you want.

    The idea is:
    - from salad or cooked veggies and fat, it is difficult to produce ammonia!
    - proteins produce ammonia naturally in the body. In addition, gut bacteria produce a lot of amminia even from small amounts of protein. Carbs feed bacteria, too. by concentrating all these into one meal, you feed the bacteria only one time. The rest of the day, they starve. The fats must be no omega 6 fats, that is no sunflower oil, no rapeseed oil, no "vegetable oil", etc. While bacteria cannot eat fats, they can gain some energy from o6 fats by inserting an oxygen into the unsaturated bonds, which they took out elsewhere. So, chose from these healthy fats: olive oil, coconut fat, butter. (duck fat and lard are very healthy too. No omega6. But they contain much choline, which is healthy but feeds bacteria. Better take the choline transdermally if you think you need some. You likely do as most people are deficient, sick people doubly so.)

    I do this. As long as I was eating proteins 2 times a day, I had elevated ammonia. With one time a day, normal. with regularly drinking vinegar-water allover the day I feel more energized. And measured that it reduces ammonia in me. With vinegar, ammonia is not only normal but really low. I love good quality non-sulfurated red wine vinegar. I drink it with a straw to avoid tooth enamel damage and I dilute it well with lots of water. I drink this since years and no tooth damage whatsoever. If you are sensitive to amines in good natural vinegar, you may want to try chemically produced cheap vinegar, usually sold as acetic acid concentrate (20%) in food stores.

    You may think that you could be at risk to nutritiinal deficiencies with such a diet. But veggies / fresh salads contain lots of vitamins, and meat (in particular organ meat) lots of other vitamins. And a 200g of meat is usually fully enough for protein intake. To be on the safe side, I measure my vitamin, mineral, protein, etc intake by cronometer.com. You enter what you eat and it computes all nutrients. For free.

    All this requires some change. But I could not live without this. I feel tons better and did not even need to see Kenny de Meirleir. In fact diet is the key part of getting out of my full-blown ME.

    In case you do these ammonia test series, let me know the outcome! I am curious about your measurement results!
     
    Last edited: Sep 12, 2016
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  6. Susanne

    Susanne

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    Hi, my daughter was tested by KDM in September, we are starting to receive her results. Below, I have written some of her test results that to some degree resemble yours:

    CD 57: 26 (reference range: 60,00 - 360,00 cells/μl)

    Ammonia in serum: 3,98 (reference range: 0.28 – 3.03 ratio to normal median)

    Quinolinic acid: 2,99 (reference range: 0.75 – 1.16 ratio to normal median)

    Soluble CD14: 3020 (reference range: 1430 – 2800 ng/ml)

    IL-8S: 220 (reference range: 0-15 pg/ml)

    SeroYERSIgG: Positive, No differentiation (Reference range: Negative)

    SeroBORREL IgM: Positive (Reference range: Negative)


    Looking at your results, I have the following thougts regarding inflammation: While your IL-8 and my daughter`s IL-8 are both elevated, I noticed that IL-8 in your case is around six times higher than that of my daughter. think IL-8 is proinflammatory. You also have elevated IL-1, which I think is also proinflammatory. I don`t know enough to interpret that, but just from looking at it, it would seem as if your results indicate more inflammation than in my daughter´s case. I should add that my daughter has been taking antibiotics, which may have controlled inflammation to some degree.

    We will try to follow your posts, and also post when we know more.
     
    flybro likes this.
  7. Daffodil

    Daffodil Senior Member

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    Lyme....
     
  8. Fritz18

    Fritz18

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    Hi @Susanne

    Thanks for your response. My initial diagnosis seems to be that I have a leaky gut with gram negative bacteria ending up in my bloodstream and causing inflammation, including in the brain. I will soon receive my treatment plan. I will PM you so we can compare notes.

    Thx
     
  9. SB_1108

    SB_1108 Senior Member

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    I just had my first follow-up appointment with Dr. De Meirleir so I thought I would add to this discussion - hopefully not hijacking the thread. I should preface that my initial appointment was in July and my follow-up was December so its a long wait for newbies.

    He did NOT perform the Armin Labs test for me based on my normal cytokine levels and he does not believe Lyme is an issue for me. Instead he feels that my issue is primarily (perhaps solely?) gut inflammation and dysbiosis. My PGE2-f and sCD14 were both elevated and my IL-8 was normal/borderline. My CD57 was not executable so I'm not sure what happened there. I also had high Elastase Expression which is a sign of inflammation. From my stool analysis, my bacteroides and clostridium levels were very high so I think that is where we plan to start with treatment.

    I will be getting my prescription for antibiotics and recommendations for probiotics next week. I'll be doing 7 days on antibiotics and then the remainder of the month I will repopulate with probiotics. That is called "pulsing antibiotics" right? He also recommended that I start taking Zeolite for gut permeability but he did not specify a brand. He suggested that I continue my baking soda in water once daily between meals to limit acid from acid producing bacteria (something that I've personally found helpful). He said he DOES expect me to experience a herx reaction so I am looking forward to that (note sarcasm)!

    He said that it would likely take 18 months to notice major improvement. Also he has not found the metabolomic testing helpful in terms of treatment. From what I understand, he finds it helpful for diagnostic purposes but feels that the metabolic abnormalities found in patients are actually the result of gut issues so he prefers to treat bacterial imbalances, not metabolic imbalances. Just as a personal side note, I wonder if treating both would help eliminate the cause and reduce symptom burden?

    I wanted to include that based on his abstract from the IACFSME conference (electronic page 31), that he was able to confirm that I meet his diagnostic criteria for ME/CFS as he has identified the biomarkers below...
    http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx
    Hope this is helpful for someone else considering treatment with him.
     
    Last edited: Dec 3, 2016
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  10. SB_1108

    SB_1108 Senior Member

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    @Daffodil I see that you were also prescribed zeolite. What brand did you purchase?
     
  11. Fritz18

    Fritz18

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    Adding the interpretation of my test results ad treatment plan for in case it helps others:

    I was diagnosed with a “gut-immune-neurotoxin disorder”, likely triggered by a Yersinia infection. I may also have Lyme disease but the Elispot LTT test was not convincing. The neuro-inflammation is indicated by high sCD14 (which codes for LPS) and quinolinic acid levels. There is a Th1->Th2 shft likely mediated by PGE2. The serum ammonia is high which may be explained by the high % anaerobes and facultative anaerobes in the microbiome.

    For the next 2 months I will be taking Xifaxan, Bio-kult, Hydroxycob (10mg), Mesalazine, Vit C, Lactoferrin, Choline-DHA and Liposomal L-Glutathione. I started two weeks ago and had some side effects after the B12 injection (anxiety, poor sleep) so I will probably continue but with a lower dose.
     
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  12. Marc_NL

    Marc_NL Senior Member

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    For me he advised this one:
    http://www.kalidashop.com/nl/toxaprevent-pure-180-capsules.html

    I tried it five days but I couldn't tolerate it so I quit for the time being, will try again later.

    .
     
  13. Daffodil

    Daffodil Senior Member

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    i couldnt figure out which brand to purchase so i read something about dr. klinghardt recommending ZeoBind by Biopure..i ordered that one. i also read something about kinghardt recommending taking Sealanto (Nutrimedix) to bind with aluminum in the zeolite but i am not sure if this is necessary. i have no idea if there are really that many differences between the brands of zeolite. i know one brand was banned here due to higher-than-safe levels of certain metals. you will also notice that Nutrimedix and some other companies have discontinued the product, which is a little concerning lol

    i get a lot worse brain fog when i take only a little it so i assume it is doing something.
    xo
     
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  14. SB_1108

    SB_1108 Senior Member

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    I just received my treatment plan and mine is very similar:
    Rifaximin 550mg, 1/day for two months
    Bio-Kult, 2 x 1/day
    Hydroxycobalamin 5ml 4 x/week
    Lactoferrin Complex, 2 x 1/day
    Omeprazole 20mg every morning
    Baking soda, one teaspoon in water daily (to reduce acidosis)

    I have two questions though... 1) According to KDM, my diagnosis is SIBO... Omeprazole is a proton pump inhibitor which is contraindicated for SIBO. I don't have heartburn so I'm not understanding why this would be prescribed? Does it help the Rifaximin in some way? 2) I am allergic to dairy so I will not be able to take the Bio-kult, has anyone had similar issues where they took an alternative probiotic?

    I also purchased the ZeoBind by Biopure. He mentioned that on the phone consultation but for some reason it was left out of the written treatment plan. I'm taking 1/4 tsp of that daily... trying to work my way up to 1 tsp. @Daffodil - do you follow Klinghardt's treatment plan closely? When I was making my decision about where to go for treatment, it was between KDM and Klinghardt but I thought Klinghardt would be cost prohibitive. I still try to keep up with his treatment plan though because I've heard some people have made major improvements through his plans.
     
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  15. Daffodil

    Daffodil Senior Member

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    @SB_1108 no no i never saw Klinghardt..i just read some of his recommendations online about the BioPure. I don't follow anyone else's protocols.

    why do you say you cannot take bio-kult because you have dairy allergy? there are only minuscule traces of dairy in it - not enough to affect anyone with allergies

    xo
     
  16. gdbennett

    gdbennett

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    @Daffodil Bio-Kult also has soy and I'm intolerant. Thoughts on that? Should we try contacting the manufacturer to find out how much @SB_1108 ?
     
  17. Daffodil

    Daffodil Senior Member

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    I think its only trace amounts of both but i am not totally sure
     
  18. SB_1108

    SB_1108 Senior Member

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    Via the Bio-Kult website:
    When I went to order everything from Kalida Shop, I quickly realized that they do not ship to the US. Sooooo I either need to find a replacement, or order from a secondary supplier. I'd really rather just find a replacement because it appears this probiotic is not meant to be for me!!
     
  19. SB_1108

    SB_1108 Senior Member

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    I bought the bio-kult from Amazon. No dairy issues for me. Taking colostrum and lactoferrin separately. Colostrum Prime Life by Jarrow doesn't seem to cause any dairy issues but the lactoferrin has made me jumpy.

    @Fritz18 what dosage of xifaxan are you taking per day?
     
  20. Fritz18

    Fritz18

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    @SB_1108 I was prescribed Xifaxan (or Normix) 200mg 3x1/day for 2 months
     

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