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

[Hip]

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 would be wary about assigning causality to a pathogen like Yersinia that has not been associated with ME/CFS in any studies.

Taking a quick look at the symptoms of acute Yersinia enterocolitica, they look very similar to the symptoms of acute coxsackievirus B infection, especially the right lower quadrant pain (though I think coxsackievirus B can cause pain in both lower quadrants). Dr Chia talks about these acute coxsackievirus B symptoms in the Invest in ME conference videos. I suggest considering an alternative diagnosis: that you had an acute coxsackievirus B gastrointestinal infection, a virus strongly linked to ME/CFS, and it was this which kicked off your ME/CFS.

 

[Hip]

I do not have crimson crescent but have elevated Coxsackie B values

Was you coxsackievirus B tested at ARUP Lab? If so, then you might like to vote in this poll.

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.

Unfortunately I am unsure how the Infectolab coxsackievirus B tests compare to the ARUP Lab tests, so I have to exclude these from the voting.

 

[duncan]

Quest and Labcorp. Damn - I voted already. Do I need to de-vote myself?

ETA - I can see discounting my values if negative, but not sure why you'd discount them if positive. The benefit of ARUP was its sensitivity to LOW values; this would not be pertinent for positives, yes?

But it's your poll, and if you wish, I will undo my vote. Just tell me.

 

[Hip]

Quest and Labcorp. Damn - I voted already. Do I need to de-vote myself?

I know you can change your vote, the way I set up this poll. Not sure if you can un-vote though.

Sometimes ARUP Lab tests are ordered through Labcorp; but I presume the results printout would still say "ARUP Lab" on it somewhere even if they were.

 

[duncan]

I cannot see ARUP. Sorry I screwed up your poll. I will try to undo; worse case just subtract one from the option no CC but elevated Coxsackie values.

ETA: I cannot undo. I tried.

Technically, I do match the requirements for the poll. The values ARE high. If that helps at all...(he said slinking off into the shadows...)

 

[Hip]

I cannot see ARUP. Sorry I screwed up your poll. I will try to undo; worse case just subtract one from the option no CC but elevated Coxsackie values.

Don't worry. Every survey or measurement contains an element of error in it. I am just looking for any overall trends.

 

[msf]

I would be wary about assigning causality to a pathogen like Yersinia that has not been associated with ME/CFS in any studies.

Taking a quick look at the symptoms of acute Yersinia enterocolitica, they look very similar to the symptoms of acute coxsackievirus B infection, especially the right lower quadrant pain (though I think coxsackievirus B can cause pain in both lower quadrants). Dr Chia talks about these acute coxsackievirus B symptoms in the Invest in ME conference videos. I suggest considering an alternative diagnosis: that you had an acute coxsackievirus B gastrointestinal infection, a virus strongly linked to ME/CFS, and it was this which kicked off your ME/CFS.

Well, I would be wary about sticking to a theory in spite of good evidence to the contrary - how would you explain the IgA and LTT positive for Yersinia?

I actually suspect the opposite with regards to Chia´s patients - that a substantial number were actually infected with Yersinia or other enteric bacteria, none of which I believe he tests for.

 

[Hip]

how would you explain the IgA and LTT positive for Yersinia?

I don't have the necessary expertise in interpreting your result, but a quick look on Google reveals this study which found elevated titers to Yersinia enterocolitica in as much as 33% of the general healthy population. So you could just be one of the random 1 in 3 people who have a chronic subclinical Yersinia infection, which you could have had for years prior to your ME/CFS.

Did any doctor suggest to you that Yersinia triggered your ME/CFS, or is this your own idea?

I actually suspect the opposite with regards to Chia´s patients - that a substantial number were actually infected with Yersinia or other enteric bacteria, none of which I believe he tests for.

So how does your idea square with this study which found no difference in the prevalence of IgG and IgA antibodies to Yersinia between patients with ME/CFS and healthy controls? Whereas Chia found enterovirus infections in the tissues of 82% of ME/CFS patients, but only in 20% of healthy controls

 

[msf]

To your first point, don´t worry, I do have the necessary expertise, and that was to IgG, not IgA. Furthermore, I had Reiter´s Triad, a search for which with reference to Coxsackie virus returns no results. I was diagnosed by KDM, and no offence, but I trust his (and then my) opinion over yours.

To your second point, it doesn´t say which criteria they used, but I believe that that study was done using the Fukuda rather than the CCC (which I believe hadn´t been formulated when the study was done). If you just take a quick straw poll of KDM´s patients (the only ME physician who tests for Yersinia), I think you will find that a significant proportion are IgA positive for Yersinia.

 

[Hip]

I was diagnosed by KDM

So KDM told you Yersinia likely caused your ME/CFS?

If Yersinia enterocolitica is the cause of your ME/CFS, did your symptoms improve / go into remission when presumably you took antibiotics to treat this bacteria infection? Bacterial forms of ME/CFS are generally treatable with antibiotics.

 

[duncan]

That is incorrect, @Hip. Bacterial forms of ME/CFS are generally NOT treatable with abx. Once the bacterial pathogen has triggered ME/CFS, ME/CFS is as intractable as it would be when triggered by any viral mechanism.

One may feel improvement in symptomology while on abx, but that can stop when abx therapy is withdrawn. This can be also true for many pwME when on antivirals.

 

[msf]

So KDM told you Yersinia likely caused your ME/CFS?

If Yersinia enterocolitica is the cause of your ME/CFS, did your symptoms improve / go into remission when presumably you took antibiotics to treat this bacteria infection? Bacterial forms of ME/CFS are generally treatable with antibiotics.

Yes, he did. If you read the papers, you´ll find that improvement of symptoms does not happen until the infection has been cleared, which has not happened yet (I am still IgA positive). Like Chronic Lyme, Chronic Yersiniosis is a difficult animal to treat, requiring months of antibiotics.

 

[msf]

Anyway, I didn´t want to take over your thread, I was just pointing out that some people who have evidence for organisms other than Coxsackie virus and EBV triggering their ME (such as those with a subsequent Lyme diagnosis) say that they have crimson crescents.

 

[msf]

Oh, just out of interest, I was negative (none detected) for Coxsackie RNA by Redlabs PCR - does Chia use PCR tests?

 

[halcyon]

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 believe he does use 1:320 as the cutoff. For one thing, this is the interpretive criteria given by the lab (technically a fourfold increase between acute and convalescent titer is their criteria.) Also, he showed this slide during his 2015 IiME talk which shows pretty well why this value is a good choice.

The few controls that appear over 1:320 probably have an acute subclinical infection which you would totally expect to find when sampling the population.

 

[halcyon]

Oh, just out of interest, I was negative (none detected) for Coxsackie RNA by Redlabs PCR - does Chia use PCR tests?

Not clinically. He spent several years trying to use these assays but found them to be too finicky. When tested over several months patients would fluctuate between positive and negative. Too many chances for a false negative using these techniques because there is very little virus present in the blood, sometimes less than 10 copies per ml which is below the detection limit of some assays as I understand.

 

[halcyon]

I didn't vote because my CVB titers are normal but my echovirus titers are abnormal. I'm also unable to determine if I have crimson crescents or not. My tonsils have been red and swollen for many months so I have trouble seeing that part of my mouth.

 

[Hip]

Anyway, I didn´t want to take over your thread, I was just pointing out that some people who have evidence for organisms other than Cocksackie virus and EBV triggering their ME

I know there are several other infectious agents associated with triggering ME/CFS; in fact, all of the agents I am aware of that studies have shown are associated with ME/CFS are detailed in this roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments document I complied. I am always on the lookout for new and interesting agents to include in the roadmap, but unless there are studies showing an association to ME/CFS, I cannot really include them, if I want to keep the document scientific.

Has KDM performed any studies showing higher levels of Yersinia in ME/CFS patients compared to healthy controls?


Incidentally, the reason I stuck to just EBV as my point of comparison to coxsackievirus B is because it is usually impossible to prove that an infection found elevated in the blood is the cause or trigger of ME/CFS. So the idea of using a mononucleosis onset of ME/CFS in this poll is that in these cases, you are pretty certain the trigger must have been EBV (or more rarely cytomegalovirus). That was my thinking, anyway.

That is incorrect. Once the bacterial pathogen has triggered ME/CFS, ME/CFS is as intractable as any viral trigger.

Dr Chia found Chlamydia pneumoniae-induced ME/CFS is quite treatable. Coxiella burnetii-induced ME/CFS also improves with antibiotics. Brucella bacteria can cause ME/CFS-like symptoms, which can be treated with antibiotics.

 

[msf]

Q Fever takes 18 months of antibiotics to cure, as the CDC themselves state. I wonder why Chia tests for Cpn, but not Yersinia or other bacteria?

 

[msf]

KDM hasn´t published any studies on Yersinia, but several physicians have published studies showing Lyme seropositivity in ME patients, so perhaps you should include that in your poll options.