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ESR - always low in ME??

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by mobyjoby, Aug 31, 2012.

  1. mobyjoby

    mobyjoby

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    I have read somewhere that ESR is always very low in PWME. Yet I am sure I have read of people with raised ESR.

    Is ESR always low at all stages, or are there subsets who have raised ESR, or is it most likely that those with an ME or CFS diagnosis with raised ESR do not actually have ME but have been misdiagnosed and have a different condition?

    Or do we just not know.

    I tried to do a search as thought this would have been asked before - but it wouldn't include ESR as it was too short a term.

    Thanks
    Jo
    taniaaust1 likes this.
  2. lnester7

    lnester7 Seven

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    My ESR is normal high. I have ME (CFS by Dr but I pass the ICC). I have low NK cell, low t cell, high b cell. Other cytokines abnormalities.
  3. richvank

    richvank Senior Member

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    Hi, mobyjoby.

    The sed rate can be either high or low in ME/CFS. If a person's blood is hypercoagulated, and that dominates, the sed rate will be low, below 4 or 5 mm per hour. If Inflammation dominates, it will be high, above its reference range. For men the upper limit of the reference range is about 10 mm per hr, and for women about 20 mm per hr.
    Best regards, Rich
  4. mobyjoby

    mobyjoby

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    Thanks both of you.
    Rich I think Dr Cheney says if he gets a patient who doesn't have low ESR he practically rules out ME which is what threw me. What would the difference in symptomology be between being hypercoagulated and being inflammation dominant - if its not too big a question?
    Thanks
    Jo
  5. biophile

    biophile Places I'd rather be.

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    There are many anecdotes from patients and doctors about a low ESR in ME/CFS or at least ME. My own ESR has usually tested at 1mm/hr (once it went as high as 3mm/hr), but I haven't been tested for years, and no doctor that I have seen has ever expressed concern about such a low ESR.

    ESR is a common screening test, which research studies would have used to help rule out other diagnoses, so there should be mountains of unpublished data on ESR in ME/CFS patients. Any research group could simply analyse this data, and if very low ESR is as common in ME/CFS as anecdotal evidence suggests, a pattern should emerge.

    However, I would be very cautious about using low ESR as any sort of litmus test. I tried to find evidence for this a while ago and came up disappointed (much of this post is a rehash of a previous one). Judging from the limited number of studies I have seen which do mention ESR (eg data from p124 of the Canadian 2003 definition), low ESR does not seem common enough to use as a litmus test, if anything it was slightly higher than healthy controls on average, with a standard deviation which would not suggest that many ME/CFS patients with lower ESR are being averaged out by many patients with higher ESR. Of course, it could be argued that the rarer ME scores are being drowned out by many CFS scores.

    Shouldn't many of the possible causes of low ESR be detected in routine medical assessment and exclude one from a CFS diagnosis? Perhaps those of us with very low ESR do not have "CFS" but some underlying undetected disease and we were dumped in the CFS wastebasket? I have purchased nattokinase and lumbrokinase for the hypothetical hypercoagulation but haven't really tested them yet. I once tried a dose of the former and coincidently noticed a similar unpleasant sensation in the sinuses that I get from aspirin.

    FWIW, here is some of the information I have come across:

    rlc and Little Bluestem like this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    My ESR is normal.
  7. taniaaust1

    taniaaust1 Senior Member

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    My blood hypercoagulates (abnormal APTT test... possible due tothe MTHFR polymorphism I have?).. but my ESR is high normal (if it went up one more point at times it would be out of the normal range). Interestingly as my ME has started to improve again in past couple of years.. my ESR instead of consistantly increasing year by year which it did for 7 years.. instead went down a bit.

    My nanna has Rheumatoid arthritis so maybe I carry genetics to that and that has my ESR up to where it is?.. (Ive no idea but I arent showing any signs currently of getting that).
  8. mobyjoby

    mobyjoby

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    Thanks - there is a lot of stuff to look at there!!
    My ESR is high apparently but I don't know the levels yet. Its hard to put the picture together at the moment esp when in the UK we only have access to very limited testing.
    Jo
  9. Ocean

    Ocean Senior Member

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    Mine was 2 and the normal range started at 0, so not sure how I could even get to having a low level, unless you can get below 0? But the range was 0-32 so 2 obviously is on the lower side.
  10. richvank

    richvank Senior Member

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    Hi, Ocean.

    The conventional medical establishment does not attach significance to a low sed rate, only to a high one. David Berg introduced the concept of Immune System Activation of Coagulation, or ISAC. He found that sed rates below 4 or 5 mm per hour were suggestive of ISAC, and recommended specialized testing for those cases. This testing is still available from the Esoterix Lab in Phoenix, which bought out his Hemex Lab some years ago. Esoterix is now part of LabCorp.

    The concept is that when there is an infection, even a normal person's coagulation system deposits some fibrin in the capillaries to help to prevent spread of the infection. However, in a person with ISAC, this response is exaggerated because of a genetic variation in one or more of the proteins in the coagulation cascade.

    David recommended that this be treated with low dose heparin or with one of the natural proteolytic substances, such as nattokinase or lumbrokinase. He also recommended that an antiviral or a transfer factor be used with this, because otherwise the virus would multiply and the deposition of fibrin would become even more severe.

    The reason for treating to remove the fibrin, according to David, is that it hinders the diffusion of oxygen from the capillaries into the cells.

    Best regards,

    Rich
    Little Bluestem likes this.
  11. richvank

    richvank Senior Member

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    Hi, Jo.

    I'm not sure. I think that with hypercoagulation a person experiences "air hunger." The idea is that it is difficult to get oxygen into the cells from the capillaries.
    With inflammation, I think it depends on where it is. The classic features of inflammation are heat, swelling, pain, and redness, but if it is somewhere internally, these may not all show up. Having elevated inflammatory cytokines would be another way to detect it. C-reactive protein can be elevated in some inflammation, too.

    Best regards,

    Rich
  12. Ocean

    Ocean Senior Member

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    Thanks so much richvank. Any links or studies on this? My doctor doesn't like to do anything without studies.
  13. rlc

    rlc Senior Member

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    Hi there are a few causes of low ESR listed here that Doctor Hyde hasn’t mentioned http://en.diagnosispro.com/differential_diagnosis-for/sed-rate-esr-sedimentation-lab-decreased/10132-153.html

    I think there is so much confusion as to whether ESR is low in ME or not for the same reason that there is confusion with everything else, mixed cohorts of patients with many different illnesses are being studied and it has caused a large amount of confusion and uncertainty about everything that has ever been found in ME.

    Unfortunately for the people who have high ESR there are hundreds of illnesses that can cause this, so it’s not a very useful test to find out what is going on unless you have other failed test results as well see http://en.diagnosispro.com/differential_diagnosis-for/infectious-disorders-specific-agent-sed-rate-esr-sedimentation-lab-increased/10132-154-170.html

    All the best
  14. richvank

    richvank Senior Member

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    Hi, Ocean.

    Below is the abstract of a paper about ISAC in CFS by David Berg et al. I don't think he mentioned the low sed rate in this paper, but he has mentioned it in talks he has given. Several years ago there was a dialog between him and the moderator of the Yahoo CFSFMExperimental group, Ken Lasessen, and quite a discussion of it in that group. He still gives talks these days, though he sold his lab. I see in the latest Townsend Letter that he is on the program to speak at a conference sponsored by Researched Nutritionals in Phoenix on Sept. 15-16, 2012, together with Joe Burrascano, Steven Fry, Carol Ann Ryser and others. His work is viewed as valid among the more alternative and integrative docs, but I don't think that most of the mainstream medical community recognizes the significance of low sed rate.

    Best regards,

    Rich


    Blood Coagul Fibrinolysis. 1999 Oct;10(7):435-8.
    Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis.

    Berg D, Berg LH, Couvaras J, Harrison H.
    Source

    HEMEX Laboratories, Inc., Phoenix, Arizona 85021, USA.
    Abstract

    Chronic Fatigue and/or Fibromyalgia have long been diseases without definition. An explanatory model of coagulation activation has been demonstrated through use of the ISAC panel of five tests, including, Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation by flow cytometry. These tests show low level coagulation activation from immunoglobulins (Igs) as demonstrated by Anti-B2GPI antibodies, which allows classification of these diseases as a type of antiphospholipid antibody syndrome. The ISAC panel allows testing for diagnosis as well as monitoring for anticoagulation protocols in these patients.
    PMID: 10695770
  15. Valentijn

    Valentijn Activity Level: 3

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    I finally got my hands on my labs from when I was first diagnosed, and my ESR was high, though barely: 21 mm/hour (normal range = 1-20).

    There was a 2nd abnormal result, called "automated sediment: erythrocyte". Also just barely high, at 17 (particles?) per uL (normal range less than 17).
  16. mellster

    mellster Marco

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    Interesting, mine was 2 as well and the ref range started at 0, so it was definitely low (and I experienced air-hunger at that time). If I get a chance I might throw that test in now that I have mostly recovered, if it is higher now maybe there is correlation. I had quite a few hypercoagulation tests done and they all came back fine, but it wasn't that specific Esoterix labs test.
  17. SOC

    SOC Moderator and Senior Member

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    Is this a common test? I've looked through the crazy number of labs I've had and I see no ESR or Sed Rate. Does it have another abbreviation? Or is it uncommon enough that it wouldn't normally have been run on me?
  18. Valentijn

    Valentijn Activity Level: 3

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    It's one of the shockingly few tests that the local hospital ran on me when I got diagnosed. So fairly mainstream for at least some uses - maybe just high values are usually seen as abnormal.
    SOC likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    You would of had one of these done but are probably just looking for it in the wrong place.

    Its standard in a the general routine Haematology test which any GP tends to run (well at least in Aust.) .A Routine Haematology test is sometimes called a Complete Blood Exam . (the group of tests which includes the red blood cell count, white blood cell count and all the types of white cells count eg neutrophils, lymphocytes etc). Try looking for the ESR in the test with those things.
    SOC likes this.
  20. richvank

    richvank Senior Member

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    Hi, SOC.

    I don't think it's run routinely in the U.S., but it's a very inexpensive test. The blood is allowed to sit, and the rate of settling of the red blood cells is measured. I think doctors are more likely to order it if they are checking for inflammation.

    Best regards,

    Rich

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