The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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POLL: Crimson Crescents In Your Throat? Know Your Coxsackievirus B Titers? ME/CFS Onset After Mono?

Discussion in 'General Symptoms' started by Hip, Jan 5, 2016.

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Do you have crimson crescents? Know Your Coxsackievirus B Titers? ME/CFS Onset After Mono?

  1. I HAVE CRIMSON CRESCENTS and elevated coxsackievirus B titers

    21.1%
  2. I HAVE CRIMSON CRESCENTS and low coxsackievirus B titers

    0 vote(s)
    0.0%
  3. I HAVE CRIMSON CRESCENTS and had a mononucleosis onset to my ME/CFS

    36.8%
  4. I DO NOT HAVE CRIMSON CRESCENTS but have elevated coxsackievirus B titers

    15.8%
  5. I DO NOT HAVE CRIMSON CRESCENTS but have low coxsackievirus B titers

    10.5%
  6. I DO NOT HAVE CRIMSON CRESCENTS but had a mononucleosis onset to my ME/CFS

    15.8%
  1. Hip

    Hip Senior Member

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    Crimson crescents are red or purple inflamed-looking areas of skin in the throats of ME/CFS patients, located by the back arches of the soft palate, on either side of the uvula (see pictures below).

    In a 1992 study (abstract here), Dr Burke Cunha found crimson crescents in 80% of ME/CFS patients, but in the general population, of those who caught a sore throat, he found less than 5% had these crescents. And a forum poll found 87% of members responding to it had crimson crescents.

    So crimson crescents are very common in ME/CFS, and a useful tool in the diagnosis of ME/CFS.

    Examples of Crimson Crescents in ME/CFS Patients
    rb6Yg.jpg
    The image below is my own crimson crescent:
    Crimson Crescent April 2011 - 2 Medium.jpeg


    Crimson crescents are lines (roughly half a cm wide) of red or purple running near to
    and parallel with the arch at the back of the soft palete (the palatoglossal arch)

    Crimson Crescents.png
    In this poll I would like to test a hypothesis: that crimson crescents will only appear in ME/CFS triggered by coxsackievirus B, and that crimson crescents will not appear in ME/CFS triggered by Epstein-Barr virus.

    My hunch that this hypothesis might be true arises from the fact that coxsackievirus B (and echovirus) can cause herpangina sore throats (ref: here), and in herpangina, the red inflamed areas in the sore throat are found in a very similar location — on the back arches of the soft palate — as the crimson crescents. See the picture of a herpangina sore throat below. Coxsackievirus B is the only ME/CFS-triggering virus that can cause herpangina.

    In fact, when I first caught the (suspected) coxsackievirus B that triggered my ME/CFS, my initial symptom was a herpangina-type sore throat that lasted for weeks. As my initial sore throat slowly subsided (but never fully cleared), the inflamed red areas at the back of my soft palette seemed to turn into my crimson crescents. So my herpangina seemed to morph into crimson crescents.

    This indicated to me that there may be a close link between coxsackievirus B (and the herpangina it can cause), and crimson crescents.

    Herpangina Sore Throat
    Herpangina Sore Throat.png

    My theory is that the crimson crescents found in most ME/CFS patients as a persistent symptom might in fact be a type of chronic herpangina sore throat due to coxsackievirus B.

    So this poll is designed to test my hypothesis that patients with crimson crescents will be those with coxsackievirus B-associated ME/CFS.



    Why just ARUP Lab? Because Dr Chia found only ARUP Lab has antibody testing sensitive enough to measure the low levels of coxsackievirus B antibodies that may be present in ME/CFS patients.
     
    Last edited: Nov 25, 2016
    Abha, merylg and Theodore like this.
  2. acer2000

    acer2000 Senior Member

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    I think I can feel the bumps on the soft palate but I can't see them. They feel worse when my overall condition is worse, and better when it is better. Is that a common experience?
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    What if you have Crimson crescents, coxsackie B via ARUP lab AND mono from EBV? How to vote?
     
  4. Hip

    Hip Senior Member

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    I didn't think that combination was likely to occur!

    But if your ME/CFS was triggered immediately after mononucleosis, and your coxsackievirus B titers were low, then please vote for "a mononucleosis onset to my ME/CFS" in the poll. But the ME/CFS has to appear immediately after the mononucleosis to count as mononucleosis onset.

    Conversely, if your ME/CFS was triggered immediately after mononucleosis, and your coxsackievirus B titers were elevated, then please vote for "elevated coxsackievirus B titers" in the poll.



    Is that how your ME/CFS was triggered, Gingergrrl, immediately after mononucleosis?
     
  5. leela

    leela Slow But Hopeful

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    What if you have crimson crescents, no coxackie, and reactivated EBV but mono wasn't your onset?
     
  6. Hip

    Hip Senior Member

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    Reactivated EBV does not count as mononucleosis onset, because I can't be sure that an EBV reactivation is actually driving your ME/CFS. Whereas my assumption is that if your ME/CFS appeared immediately after mononucleosis, EBV (or more rarely cytomegalovirus) is going to be the trigger.

    So unfortunately that means you should not vote in this poll.
     
    Last edited: Jan 5, 2016
  7. Hip

    Hip Senior Member

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    I don't have any raised areas on my crimson crescents (my crimson crescent is shown in the second picture above); the skin has a purple color, but is not bumpy or raised.
     
  8. leela

    leela Slow But Hopeful

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    But if you don't include patients who have persistent crimson crescents but no coxackie, are you not skewing your data collection to the bias of your hypothesis?
    I have no dog in this game, just confused about your methods here.
     
  9. Hip

    Hip Senior Member

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    Anyone who has been tested for coxsackievirus B at ARUP Labs can vote, and they should vote according to whether their coxsackievirus B titers were elevated or low.

    Elevated suggests an active infection, which signifies coxsackievirus B-associated ME/CFS.

    Low suggests no active infection, which I am equating to ME/CFS which is not associated with coxsackievirus B.

    Labs other than ARUP don't have enough sensitivity to detect chronic coxsackievirus B in ME/CFS patients, so their results do not count. This is what Dr Chia found.
     
    Last edited: Jan 5, 2016
  10. Mij

    Mij Senior Member

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    @Hip what are your test results for Coxsackievirus B? Just curious.
     
  11. leela

    leela Slow But Hopeful

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    Oh, thank you for clarifying, I hadn't seen that bit of your original post in my brainswell.
     
  12. Forbin

    Forbin Senior Member

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    I thought that Ian Lipkin was unable to detect much in the way of viruses in plasma when he used a test that screened for something like 500 of them. I think he did allow that viruses could be hiding out in other tissues, but would testing blood plasma (for antibodies I assume) reveal that?

    Decades ago, I came down with ME following an incredibly painful sore throat that, in retrospect, I think may have been strep. I had a negative test for Mono. I have crimson crescents but I've never been tested for Coxsackie B.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @Hip What do you consider low titers vs. elevated for coxsackie B? I was tested twice by ARUP and on the two tests the titers were flipped (one positive coxsackie and one positive echo virus.)

    I have just repeated the ARUP panel and see Dr. Chia for a consult in Feb and curious what the titers will be now that a year has passed. My highest titers that were off the charts were EBV.

    Why could someone not have Crimson crescents with EBV? Will answer your other questions tomorrow.
     
    Mij likes this.
  14. A.B.

    A.B. Senior Member

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    I do have crimson crescents but it's important to keep in mind that these have not been confirmed to be specific to ME/CFS or even any illness. There was a doctor who thought they were a sign of ME/CFS but I don't think there has ever been an independent verification, with a blinded observer and a random sample.
     
    Last edited: Jan 6, 2016
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  15. msf

    msf Senior Member

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    What if you have crimson crescents and your illness was triggered by a Yersinia infection? Some of those whose illness seems to have been triggered by Lyme also report them. I don´t think this is going to be pathogen-specific, unfortunately.
     
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  16. Hip

    Hip Senior Member

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    I wanted to get tested, but ARUP Lab tests for coxsackievirus B and echovirus are expensive, around $500 each, so I did not think it worth paying for those out of my own pocket. For that reason, I have not voted in this poll.



    Lipkin told me that the high-throughput sequencing technique he used on the blood samples in his study is not be able to detect coxsackievirus B infections located in the tissues of ME/CFS patients (which is where Dr Chia found them in ME/CFS patients).




    How did you determine that you ME/CFS was triggered by Yersinia? That is not one of the microbes which has been associated with ME/CFS.



    In fact a study was performed that found crimson crescents in 80% of ME/CFS patients. It was not replicated, but that is a shame, because if validated, crimson crescents could be useful clinical sign for ME/CFS.



    On the Enterovirus Foundation website, it states that for chronic enterovirus, titers of 1:320 and higher in the ARUP Lab micro-neutralization test are good indicators of current active infection. So that is what I am going by: if your titers are 1:320 or above, then you are elevated (active infection); otherwise you are low (inactive infection).

    I am assuming (but I don't know for sure) that Dr Chia also uses this 1:320 threshold to signify a current active infection. He is on the board of the Enterovirus Foundation. Perhaps when you visit him in February, you might ask him what titer level he deems to be an active infection. I'd be very interested to know.



    If you had elevated titers at any point for coxsackievirus B, then please select the "elevated coxsackievirus B titers" options in your vote.



    In the first post I explain this: my hunch is that crimson crescents may simply be a chronic version of herpangina. Coxsackievirus B can cause herpangina, but EBV cannot. That's why I was thinking that crimson crescents might only be found in coxsackievirus B-associated ME/CFS, but not in EBV-triggered ME/CFS.
     
    Last edited: Jan 6, 2016
  17. msf

    msf Senior Member

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    Well, it was a retrospective diagnosis, but I am 95% sure it was correct. I had the classic symptoms of a Yersinia infection, and I was IgA positive for Yersinia Enterocolitica when I was first tested for Yersinia about 5 months after I had fallen ill. I was also borderline positive on the Yersinia LTT a few months after the Immunoblot.

    KDM tests most of his patients for Yersinia, since it is a known co-infection of Lyme, but I believe he said that it was quite unusual for him to have a patient with Yersinia sans Lyme or other TBIs (I have tested negative for all TBIs so far).
     
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  18. Mij

    Mij Senior Member

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    @Hip I did not answer your poll. I may have had crimson crescents when I became ill, but it was over 20yrs ago so I can't remember exactly. I don't know if was tested for Mono at the time. I was tested for Enterovirus by
    PCR through the National Microbiology Lab in Manitoba(Canada). My tests were negative.
     
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  19. bertiedog

    bertiedog Senior Member

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    I do have what I think are crimson crescents on my throat (it never looks normal) and my result 18 months ago from Infectolab was 1:1000. normal range given <1;100.

    I haven't followed up with any specific treatment for this.

    Pam
     
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  20. duncan

    duncan Senior Member

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    I do not have crimson crescent but have elevated Coxsackie B values...and Coxsackie A...and EBV....and Lyme...and Chlamydia pneumonia...and bartonella...and babesia...and parvovirus...and mycoplasma...and others.

    I suspect many of us fall into this boat.
     
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