POLL: Crimson Crescents In Your Throat? Know Your Coxsackievirus B Titers? ME/CFS Onset After Mono?

[Hip]

Note: Please only vote in this poll if your coxsackievirus B titers were tested at ARUP Lab (no other lab will do); or else if you had a mononucleosis onset of ME/CFS

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, 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.

Spoiler: Cunha 1992 Full Paper on Crimson Crescents

Crimson Crescents—A Possible Association with the Chronic Fatigue Syndrome

15 February 1992

To the Editors: Approximately 80% of patients with the chronic fatigue syndrome, as defined by the Centers for Disease Control (1-3), seen in the Winthrop-University Hospital Chronic Fatigue Syndrome Center, have a peculiar purplish discoloration of both anterior pharyngeal pillars. The crescents are an intense crimson color and are well demarcated along the margins of both anterior pharyngeal pillars. They are not associated with pharyngitis or discoloration of the posterior pharyngeal pillars or uvula or accompanied by either anterior or posterior cervical adenopathy. In patients without tonsils, the crimson crescents assume a posterior position in the oropharynx. This appearance is most closely associated with elevated HHV-6 titers in our patients. high IL-2 receptor levels in our patients. The patients do not complain of a sore throat, but, occasionally, they complain of a sore neck anteriorly above the thyroid gland.

The "crimson crescents" gradually fade over a period of 3 to 6 months, as the patient's condition improves, and eventually become indistinguishable in color from the normal oropharyngeal mucosa. We suggest that studies of the chronic fatigue syndrome systematically evaluate the possible association between these crimson crescents and the syndrome.

Burke A. Cunha, MD
Winthrop-University Hospital
Mineola, NY 11501


References

1. Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis. 1991;13(Suppl 1):8-11.

2. Holmes GP. Defining the chronic fatigue syndrome. Rev Infect Dis. 1991;13(suppl l):53-5.

3. Klein NC, Cunha BA. Chronic fatigue syndrome. Infect Dis Practice. 1991;15:1-7.


Note that the phrase "high IL-2 receptor levels in our patients" is crossed out and replaced with "elevated HHV-6 titers in our patients" — see Erratum 1 May 1992.

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

The image below is my own crimson crescent:

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)

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

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.

HOW TO VOTE IN THIS POLL

This poll is only open to two types of ME/CFS patient:

(1) Patients who have had their coxsackievirus B titers measured at ARUP Lab (and it must be ARUP Lab). Patients with both elevated coxsackievirus B titers and low coxsackievirus B titers should vote.

(2) Patients who have observed that their ME/CFS immediately followed mononucleosis (glandular fever), which means that their ME/CFS will have been triggered by Epstein-Barr virus (or possibly by cytomegalovirus, a rarer cause of mononucleosis).

No other ME/CFS patients should vote in this poll, other than the above categories.


Elevated titers to coxsackievirus B means ARUP Lab titers of 1:320, 1:640, 1:1280 or higher, which are a good indicator of an active infection. Ref: 1

Low titers to coxsackievirus B means ARUP Lab titers of 1:160, 1:80, 1:40, 1:20 or 1:10.

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.

 

[acer2000]

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?

 

[Gingergrrl]

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

 

[Hip]

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

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?

 

[leela]

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

 

[Hip]

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

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.

 

[Hip]

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?

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

 

[leela]

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

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.

 

[Hip]

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?

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.

 

[Mij]

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

 

[leela]

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

 

[Forbin]

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.

 

[Gingergrrl]

@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.

 

[A.B.]

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.

 

[msf]

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.

 

[Hip]

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

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.

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.

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).

What if you have crimson crescents and your illness was triggered by a Yersinia infection?

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.

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.

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.

@Hip What do you consider low titers vs. elevated for coxsackie B?

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.

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.

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

Why could someone not have Crimson crescents with EBV?

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.

 

[msf]

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).

 

[Mij]

@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.

 

[bertiedog]

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

 

[duncan]

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.