The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Does Rituximab treatment "cure" low ESR

Discussion in 'Rituximab: News and Research' started by jaybee00, Jan 25, 2016.

  1. jaybee00

    jaybee00

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    Hello,

    New to this site. Does anyone know if treatment with rituximab treats low erythrocyte sedimentation rate (ESR)? I have very low ESR, and wanted to know if rituximab treatment might end up normalizing low ESR indirectly somehow. I tried emailing F&M but had no luck.

    Thanks,

    JB
     
  2. msf

    msf Senior Member

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    Do you associate low ESR with any symptoms? I think even if we find a ´cure´ most of us will still be abnormal on many tests.
     
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  3. Isaiah 58:11

    Isaiah 58:11

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    I think it is an interesting question. It seems reasonable that if something is really reaching to the core layer of the illness and not just alleviating symptoms it should change lab results back to normal.

    I am familiar with David Berg's ISAC hypothesis. Did anyone's ESR go back to normal while following his treatment plan? If I recall correctly, the heparin and/or enzymes were to be used with antibiotics, antivirals, and whatever other anti-whatevers necessary. I wonder if sed rate results varied between just blood thinners and the combination of blood thinners and other medications.

    If there was a change and it was measurable between the two groups it would be interesting to compare them to the Rituximab patients. Perhaps it could potentially help differentiate between an autoimmune cause or a virus residing in B cells.

    I'm on my phone, so if this is garbled, please blame the small screen and autocorrect. :)
     
  4. A.B.

    A.B. Senior Member

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    The only ones that have done Rituximab trials are Fluge and Mella and I don't think they have reported anything on ESR.

    My understanding is that low ESR being typical for CFS is more hearsay than well established fact. Improvement in symptoms is a much more useful way to determine whether a treatment is working. As msf said it's not clear whether low ESR even produces any symptoms.
     
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  5. drob31

    drob31 Senior Member

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    I'm working with a practicioner that trained under David Berg. I also spoke to David Berg, himself, mainly because I once tested positive for antiphospholipid antibodies. However, I then tested negative twice, meaning it was a false positive (very possible) or transient. I still sought him out, and his practicioner tests for lyme/co-infections and viruses like hhv6, ebv, and cmv / mycoplasma. Seems like a pretty common protocol.

    In any case, they attempt to treat with herbal antivirals and such based on your results and possibly use long term antibiotic treatment.

    I'm not sure how deep the rabbit hole goes with antivirals, like rituximab.
     
  6. msf

    msf Senior Member

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    Ritux isn´t an antiviral.
     
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  7. justy

    justy Senior Member

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    Surely LOW ESR is normal and means you DONT have inflammation? or am I missing something?

    BTW I have HIGH ESR, but it's just another one of those 'we don't worry about that' tests the NHS have given me that I have failed.
     
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  8. jaybee00

    jaybee00

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    Very low ESR is commonly found in CFS people--google low ESR and CFS and you will find material--I cant post links.
     
  9. Kati

    Kati Patient in training

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    Low ESR isn't a disease, nor it is diagnostic for ME. Personally my ESR has always been on the cusp of highest normal value and that isn't a disease either. And when. It went twice the normal limit, it still wasn't a disease.
     
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  10. Isaiah 58:11

    Isaiah 58:11

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    @justy There is something strange about the low ESR because it is low even during extreme inflammation. I think it was Dr. Byron Hyde that noticed it first. Something about rarely being over 5. I think it is quoted on the hummingbird.me site.

    For example, at one time I had anti-ccp of 264 (should be <16) and a TGFb1 of 40,000 (should be <2380) with a sed rate of 2.
     
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  11. JaimeS

    JaimeS Senior Member

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    My ESR is typically between 3 and 7. I've also seen low ESR listed as a symptom of CFS/ME.

    -J
     
  12. justy

    justy Senior Member

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    My ESR is not low - usually around 18, according to Dr Google this means I don't have M.E.CFS - Yay!
     
    Last edited: Jan 25, 2016
  13. JaimeS

    JaimeS Senior Member

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    Justy, you and I have different lab values for something? I find this shocking! ;)

    -J
     
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  14. bmoney$

    bmoney$

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    I shared this a couple months back, but it's a heart disease study that shows a fair # of study participants had an ESR of <5 when tested. While it doesn't say if they are healthy or not, I imagine since it's a population study that the greater majority do not have CFS or other diseases that could have a low ESR. My read is that a low ESR is likely normal and not indicative of this condition.

    Take a look and see if you have a different conclusion
    http://aje.oxfordjournals.org/content/158/9/844.full.pdf html
     
  15. jaybee00

    jaybee00

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    From an earlier PR thread....
    there are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia and hyper-fibrogenemia
     
  16. bmoney$

    bmoney$

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    So your thinking is that ~20% of a population could have one of those conditions? Seems highly unlikely.

    Has anyone had an ESR measure before coming down with CFS that was "normal" then was lowered after coming down with symptoms?

    If not, it's highly possible that people could have already had a low ESR prior to coming down with symptoms.
     
  17. JaimeS

    JaimeS Senior Member

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    @bmoney$ -- Before severe symptoms set in, my ESR was significantly higher. It was normal-ish. When I felt really horrible, it was low. I had a reading of 2, 3, 3, 4, 4, 4, 5 over the course of the acute phase.

    Now that I am feeling and doing better, it is back up to 11.

    Note: not that I believe this proves anything at all! Just one person's data, and I won't be satisfied it's staying more in the normal range until I see a few more readings. The reading of 11 could be a blip.

    Note 2: those readings aren't in chronological order, they're in numerical order. I remember I had an ESR of 2 once because it was shocking. I know it was 3 twice, and so on.

    -J
     
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  18. Isaiah 58:11

    Isaiah 58:11

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    I don't know what mine was pre-illness but when I am feeling "better" (4 out of 10), it has raised to a 3. I suspect it also goes lower than 2, but I wouldn't know because at that point I am not able to leave the house.
     
  19. JaimeS

    JaimeS Senior Member

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    @Isaiah 58:11 -- I just can't hit the 'like' button for that. I'm so sorry. :(

    -J
     

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