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My test results from KDM

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by justy, Jun 28, 2014.

  1. justy

    justy Senior Member

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    So I have my results back and have hurt my brain trying to understand them all - but as there is not too much that is out of range it hasn't been too hard.

    I will just post the results that were out of range, with the reference ranges if applicable.

    food intolerance panel - only chicken egg showed a strong reaction. With wheat, gluten, rye and mushrooms showing a slight but very low reaction.

    Bartonella henselae IgG marked as 1/64 in red (meaning positive), but then says: meaning of low titres is unknown.Aspecific reactions are possible. Then underneath it says Bartonella - negative.

    I also have another remark on Yersinia which says: see enclosed immunoblot report. The report makes no sense to me - a reference strip and patient strip with bands that I cant read or understand, except the report has the word negative on it.

    Chlamydia serology - Chlamydia pneumonia IgG POSITIVE. IgA NEGATIVE. I'm not sure if this means I have CPn or not - would fit with my symptoms and I have had pneumonia twice in the past 6 years. The report also has a band with reference ranges, but again I don't understand how to read it, but it says Cpn = pos. 18P.

    Perforin mRNA expression = 1300 reference range listed as 250,00 - 750,00 (I though the ref range was in the thousands and my perforin was low, but my husband says the way they do it in Europe is that the 250,00 is 250 -750 and therefore my perforin is HIGH - which I think means my NK cell activity is actually high, not low as seen in M.E)

    Prostaglandine E2 = 17.46 reference range 0.10 - 2.81 HIGH (inflammatory? highly correlated with brain inflammation?)

    Soluble CD 14 = 3908 reference range 1430,00 - 2800,00 HIGH not sure what this means?

    NAGA (I presume nagalese) DPP4 Adult = 18.39 reference range 18.80 - 33.79 SLIGHTLY LOW. All other Naga normal.

    CYTS (cytokines?) all normal except IL-8 Serum = 2394 reference range 0.00 - 15.00 HIGH

    T cells, B cells, NK Cells screening all listed as normal.

    Haemoglobin = 11.6 reference range 12.0 - 16.0 Iron levels LOW again!

    MCV LOW = 81 " " 82 - 98

    MCH LOW = 26 " " 27 - 34

    Antinuclear Factor = 80 reference range 0 - 40 Antinuclear antibodies detected in a speckled pattern

    Ferritin = 7 reference range 12 - 125 LOW again!

    Vitamin D3 25 OH = 10.6 reference range 20.0 - 43.0 LOW.

    TSH marked as in range, but it's at 3.42, which I think is quite high.

    Stool test shows a low diversity index of 3.00 with Dysbiosis associated with low diversity.
    Also a low Firmicutes versus Bacteroidetes ratio which may be associated with gut inflammation.

    The biggest shock has been seeing the ANA result - especially as I have wondered for years if I may in fact have something like Lupus, rather than M.E. KDM did test me for VDRL which many Lupus patients have a false positive to and mine was negative, so I guess he was considering Lupus - although it doesn't have to be positive . It seems to me as well that my immune system is inf act ramped up, rather than down, which fits with the autoimmune hypothesis.

    I looked at the Lupus criteria today again and you need 4 for a diagnosis and I now have 7 Cpn is also commonly found in Lupus and MS as is persistent low ferritin and low D3 levels. I will be asking KDM what he thinks about this when I have my phone consult in a couple of weeks.

    It may also explain why I no longer seem to catch colds, flu etc, whereas years ago I was non stop catching things.

    I would be very interested to hear what others think about my test results - I don't seem to have the typical 'M.E' pattern I don't think...

    All the best
    Justy.
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  2. sueami

    sueami Senior Member

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    I don't have interpretations for you, but I would like to follow this thread, as I have switched primary care physicians and the first thing my new doc wanted to test me for was lupus. I'm waiting for results on my ANA right now.
    justy likes this.
  3. minkeygirl

    minkeygirl Senior Member

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    @justy Paragraphs please. I can't read this.
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  4. SDSue

    SDSue Florida

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    @justy
    Prior to falling ill, I was sick with colds, infections, etc non-stop! For the past 4 or 5 years, I haven't "gotten sick", I just "am sick".

    Have you been to StopTheThyroidMadness.com? Great info on hypothyroid, although every time she redesigns the site, it gets harder to navigate. With your elevated TSH (used to need a 5 to be considered elevated, they keep lowering it. Now it's 3 at my lab - I still disagree!) and low ferratin, this would be an issue.

    I have the STTM book. PM me if you want more info :)
    justy likes this.
  5. Mij

    Mij Senior Member

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    This whole thyroid and ferritin issue is frustrating for me too. I recall around 5yrs ago my TSH was below 2 (for the first time in years!) and my ferritin was up to 40(!!) without iron supplements, I was feeling very good during that period of time. Don't know why it all normalized but there is a relationship there. I can't figure it out. I"m back to low ferritin and TSH around 2.90.
    globalpilot, SDSue and justy like this.
  6. maryb

    maryb iherb code TAK122

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    I don't think NAGA means nagalase.
    Mine wasn't expressed like that.
  7. justy

    justy Senior Member

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  8. maryb

    maryb iherb code TAK122

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    Think these were the ranges when mine was measured at 2.30

    Adults:
    1. Apparent nagalase activity: 0,5-0,95 nMol/ml/min

    2. Gc-globulin: 279-579 mg/L
    3. Effective nagalase activity: 0,44-1,29 nMol/ml/min
    4. Dipeptidyl-peptidase (DPP-4) activity: 18,80-33,79 nMol/ml/min
    Last edited: Jun 28, 2014
    justy likes this.
  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Same thing with Justy and SDSue - for some reason I didn't catch any colds last winter or this- I didn't leave the house much at all during these winters , also didn't catch the colds kids in my house had gotten.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You have a couple of markers for high inflammation-Prostaglandine E2= 17.46 & IL-8 Serum = 2394--these are significant.

    The high sCD14 is considered significant in ME, but of course I have forgotten why, but he wrote about my high sCD14 (mine was 7417): "indicates that over time there has been more than normal amounts of LPS in the serum."

    High NK cell activity is also fairly common--mine was too. He said something like "over active immune system." I have seen other patients with high NK cell activity rather than low.

    I have Yersinia IgA negative and Yersinia IgG positive--did you have both of those tested?

    Also, he usually sends blood to UZ Brussel for Innunofenotypering--do you have tests from them yet?

    Those are quick comments :).

    Sushi
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  11. daisybell

    daisybell Senior Member

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    @justy
    I'm not sure if an ANA reading of 80 means anything significant. I think that usually if the reading is over 160, the doctors begin to think it might be relevant... However I could be wrong.

    My ANA is 1280 (anti-centromere) which indicates CREST syndrome but I'm not sure that this so isn't just part of my ME...
    aimossy likes this.
  12. Kati

    Kati Patient in training

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    I agree with @daisybell , @justy low titer ANA is not significant. Mine is also 1:1280 and no one cares. They say heathy people have high ANA and never develop an illness. It's not specific enough.
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  13. Valentijn

    Valentijn Activity Level: 3

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    Isn't it odd how they keep saying that even when the patient is very sick? :rofl: At the very least it should provide direction for further investigation.
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  14. Kati

    Kati Patient in training

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    @Valentijn it kills me. so in my case, high titer ANA whcih went from speckled to homogenous, a 15 months long out of range high ESR, highest was 40, a very sore joint with imaging whihc areabnormal, and my doc still won't do amything, very reluctant to send me to a rheumatologist.
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  15. Helen

    Helen Senior Member

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    Hi Justy,

    I hope you will get all the help you need from KDM, but just some comments on the lab values that I am familiar with.

    Your TSH indicates a low thyroid but should first be completed with free T3 and free T4. And test for antibodies. Often a lowered body temperature correlates with a low thyroid. www.stopthethyroidmadness.com has a lot of good information.

    An iron deficiency might have an impact on the function of the thyroid. According to two thyroid doctors the ferritin should be high in reference range.

    A B12 deficiency might cause an iron deficiency. Quoting a doctor: "without enough B12 the iron will not stay". What about other markers for B12 deficiency as homocystein and methyl malonic acid?

    With a low thyroid, iron and eventually B12 (and folate) you are also more prone to infections and an impaired immune system.

    Good to see some treatable issues among the others that I don´t know enough about. Best of luck, Justy!
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  16. justy

    justy Senior Member

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    Yes it is true that some healthy people can have a positive ANA and not have any disease process going on. BUT I have read over and over again that if the person is ILL with signs of an autoimmune illness eg joint pain, malar rash, light sensitivity, fatigue etc then of course ANY amount of antibodies is significant.

    I am not sure if the value on my result relates to a titre - it just says result 80 and reference range is 0 - 40.

    Even if this is only a low result it means something to me, after years of trying to get the NHS to take me seriously and properly rule out all other possibilities, which they have never done.

    Under the UK NICE guidelines for GP's, you can't actually fail any test result (apart from maybe the iron ones) and still be diagnosed with CFS, which means that they will now have to investigate further.
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  17. justy

    justy Senior Member

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    Yersinia was negative on both. The result from UZ for immunophenotyping says (in Dutch) that the results for the lymphocyte subsets and lymphocyte subsets 2 are with Dr De Meirleir. I also don't have anything relating to my exercise test.

    Ive just looked into the SCD14 and it looks like this could be related, as you said with LPS, which relates to activity of gram negative bacteria - would this include Cpn then I wonder?

    Thanks for your comments!
  18. justy

    justy Senior Member

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    Hi Helen, thanks for your comments. I am not deficient in B12 as I did over a year of daily injections some time ago, but stopped when they were no longer helping.

    In terms of the thyroid I have already been down that route and spent quite some time investigating it. I trialled thyroxine with Dr Myhill and when that didn't work out trialled Armour thyroid and supplements to boost the thyroid function such as iron and selenium (I have been taking iron supplements on and off for over 3 years now and my iron deficiency anaemia and low ferritin is intractable) with Dr Skinner who believed that most M.E patients really had sub optimal thyroid functioning.

    Unfortunately the Armour trial didn't work out and left me far sicker than before, with horrific vertigo that took months to resolve - a year later I am just getting back to the level of functioning I had when I first went to see him.

    So I went back to Dr Myhill who did a cortisol saliva test as she was concerned my adrenals where not working properly which was why I could not tolerate the Armour. My cortisol and DHEA are both very low. She prescribed DHEA and HC cream - both of which I cannot tolerate even at small doses - so I have pretty much given up with that side of things for now, but I agree that a TSH of 3.42 is on the high side - Dr Skinner felt it was enough to diagnose me with Hypothyroidsim, but I cant tolerate ANY of the treatments (story of my life)

    So the hope was to see KDM and that he might find an underlying cause for these ongoing issues. I know he feels that things like thyroid dysfunction are downstream of other issues with the gut, immune system, bacterial infections etc that are disrupting homeostasis, and that if you treat those things first the others may sort themselves out.

    However this may not be the case, or it may be more complicated for me on the hormonal front as I have had two post partum haemorrhages after my first and third births and Dr Myhill felt I might have Sheehans syndrome - but I cant seem to get anyone interested in that.

    Thanks once again for taking the time to reply to my thread.

    All the best
    Justy
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  19. Helen

    Helen Senior Member

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    Hi Justy,
    So sorry to hear that you have such problems with medications and supplements too. I think KDM is quite right (as also Rich Van Konynenburg presented in his videorecorded seminar) that many of our symptoms are downstream of other issues. I hope that you will be able to discuss Sheehans syndrome with KDM.

    Best to you,
    Helen
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  20. Leachim

    Leachim

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    I think a (relatively) low positive ANA test is relatively common in ME patients. It is one of many immune markers that KDM interprets holistically. If you have read the research by Morris and Maes it's obvious that ME patients have a wide range of ”mild” autoimmune reactions tothings like neurotransmittors and hormones, and I think ANA is in that range of autoimmune reactions. Autoimmune diseases are historically treated asseparate entities based on which tissues are affected by autoimmune activity, but they overlap a great deal and most of them are more related than separate whenlooking at the immune activity. ANA is very unspecific, it's just widely spread as a marker of elevated autoimmune activity.

    ”That said, only about 11-13% of persons with a positive ANA test have lupus and up to 15% of completely healthy people have a positive ANA test.” (https://www.rheumatology.org/Practi..._And_Conditions/Antinuclear_Antibodies_(ANA)/)

    I started with very high Nagalase and Elastase levels, high Perforin (not uncommon in ME as noted), and extremely low sCD14 (which I think is more uncommon). Two years ago KDM said to me that he always used these four tests since ME patients always had too high or low in some of them, over time he gets more info and some tests aren't as important any more. (E.g. maybe Elastase testing now is redundant, other more important tests indicate more about the underlying problems.) Some of the tests seems to go both ways in dysregulated immune systems, and it's the total profile that needs to be interpreted, and interventions targeted at points which are likely to be possible to affect. Over time the profile can change quite much.

    My understanding of where I started is that I had a extremely overactive non-specific immune system, due to a very vigorous combat to control latent infections that the specific immune system didn't control well enough. This by the way gives the pattern of not reacting to new virus infections, they are handled by the non-specific immune system and might be felt like a mild rise in the ever ongoing infectious symptoms, but no ”disease outbreak” (it's the effects of the Th1 response that causes a lot of the symptoms in common virus infections). High Nagalase and other mechanisms blocked the Th1 responses almost completely – if the macrophages don't become activated the T killer cells system don't get the correct signals to mount a response, and we get stress in the non-specific immune system, stress in the Th2 arm of the adaptive immune system, and a passive Th1 arm. Now my Nagalase and Elastase still are a bit elevated but much lower. I took Perforin and sCD14 at my last appointment, haven't done them in a while so it will be interesting to see. This was meant just as an example of how individual immune dysfunction is profiled and followed during the course of treatment.

    (The interpretation of my own immune dysfunction is partly my own, based on the test results, what KDM has said, and reading a few books on immunology.)

    If you don't have elevated Nagalase there are other immune pathways that probably are dysfunctional – there is an spectrum of different immune profiles in ME, and the testing aims to make a map of the individual profile, find underlying causes like which infections are present that the immune system has trouble controlling, of course scan for other issues that are part of upholding the disease state in the body, and use the available knowledge about interventions that might push the systems in the right direction.

    How the individual reacts to the treatment of course also is a part of the individual profiling – the first testing is important for where to start, but it's complex and what happens during the treatment is as important as the initial testing for fine-tuning. I hope you'll get a better understanding about what is going on in your body at your next consultation!
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