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

[duncan]

@Hip, I would caution you not to confuse treating a pathogen that might trigger ME/CFS, and attempting to treat ME/CFS itself.

The same confusion often arises in treating Borrelia and ME/CFS.

I would suggest that if treating chronic Chlamydia pneum with prolonged abx therapy resolves the symptomology, then what has been cured is CP, not ME/CFS.

 

[Hip]

several physicians have published studies showing Lyme seropositivity in ME patients, so perhaps you should include that in your poll options.

As explained just above, a positive test result to Borrelia, EBV, HHV-6, etc is no proof that Borrelia, EBV, HHV-6, etc is causing your ME/CFS symptoms. That is why I chose a mononucleosis onset as my point of comparison, because in these cases, the triggering agent is known.

@Hip, I would caution you not to confuse treating a pathogen that might trigger ME/CFS, and attempting to treat ME/CFS itself.

Any reason you say that?

 

[msf]

Neither is a positive result for Coxsackie virus.

 

[Hip]

Neither is a positive result for Coxsackie virus.

Of course, but I can only go by the best evidence available for a possible coxsackievirus B cause or involvement in ME/CFS, which is the ARUP Lab test.

So I chose the best evidence available for coxsackievirus B involvement in ME/CFS, and the best evidence available for an EBV involvement in ME/CFS, which I think will be a mononucleosis onset.

Choosing the best evidence available is so the poll can be made as reliable as possible.

 

[halcyon]

Neither is a positive result for Coxsackie virus.

It gets closer than the other listed pathogens because enteroviruses have been successfully recovered from the tissues of ME patients, tissues where associated symptoms are seen (diencephalon, brainstem, muscles, heart, GI tract.)

 

[msf]

Has anyone looked for the other pathogens?

 

[duncan]

@Hip, Lyme doesn't cause ME symptoms; it causes Lyme symptoms. ME causes ME symptoms. Same with EBV and Coxsackie and Chlamydia etc - none of these cause ME/CFS symptoms. They each generate symptoms that can be similar in some regards to ME/CFS. But not one of these pathogens has been proven to BE ME/CFS.

Now, each of those pathogens may give rise to ME/CFS, but they are still discreet diseases. Ultimately, this is as basic as a definitional exercise.

I think this error occurs not just among clinicians, but researchers as well.

 

[Hip]

@duncan that sounds like someone who wanted to split hairs but missed their target.

 

[duncan]

I think splitting hairs is exactly what we need to be demanding and doing as a community.

 

[Gingergrrl]

@Hip, I still have not voted but am going to give you the exact data and let you interpret it and I will vote accordingly.

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 will definitely ask him at my appt in Feb but until then, will tell you the titers. I was tested twice in early 2015 by ARUP and the titers flipped with each test but were never at 1:320 which you consider elevated or high.

They were:

First test 1/13/15: Coxsackie B 4: 1:40
First test 1/13/15: Echovirus 11: 1:160

Second test 2/24/15: Coxsackie B 4: 1:160
Second test 2/24/15: Echovirus 11: 1:80

I re-did the ARUP tests a few weeks ago for my upcoming consult with Dr. Chia but will not have the results until the appt. It is my first appt with him and I have not met him yet. I am very curious to see where the titers are now, approximately one year later.

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

Since my highest titers for Coxsackie B4 & Echo 11 were 1:160 (never 1:320) then I assume you would not consider them to be high titers?

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.

I do have what looks like Crimson Crescents when I look in the mirror but I never had the herpangina that you posted. During mono/EBV, my tonsils were extremely enlarged and were almost touching each other and blocking off my air supply. At one point I got an abcess on my tonsil and part of it turned black and fell off (sorry to be gross.) I had to go to the ER twice during mono, I was so ill. Have had no throat issues since mono in 2012 (although the crimson crescents do appear to be there.)

My mom said that I had coxsackie virus as a baby so this may be why the titers are elevated but are not at 1:320? Will be telling all of this to Dr. Chia in Feb but am starting to think that all the viral titers are a red herring and not the cause of symptoms in my particular case (but of course I could be wrong.)

 

[halcyon]

Has anyone looked for the other pathogens?

There's less of a reason to. Those other pathogens aren't known to have such wide tropism.

 

[halcyon]

My mom said that I had coxsackie virus as a baby so this may be why the titers are elevated but are not at 1:320? Will be telling all of this to Dr. Chia in Feb but am starting to think that all the viral titers are a red herring and not the cause of symptoms in my particular case (but of course I could be wrong.)

Going by Chia's graph of antibody levels that I posted, you would seem to fall within the normal range seen in healthy controls. I think what's weird about your titers though is the way they fluctuate. I've had several antibody assays done and my titers are static.

 

[Gingergrrl]

Going by Chia's graph of antibody levels that I posted, you would seem to fall within the normal range seen in healthy controls. I think what's weird about your titers though is the way they fluctuate. I've had several antibody assays done and my titers are static.

I honestly do not know either and will be very curious how Dr. Chia interprets the titers in addition to seeing what the new ones are. I wish I could view them through ARUP labs but these tests take several weeks and then the results go straight to the doctor and I know he will not release them to me before seeing him since I am a new patient.

If the titers are normal this time, I don't think Coxsackie or Echovirus are the cause of my current dysautonomia, pulmonary, or mast cell issues but I feel there is nothing to lose in consulting with someone as wise as Chia since the titers were elevated (but not extreme according to the chart.) Am still trying to leave no avenue or stone unturned.

And still confused how to vote in this poll!!! I assume I vote in the EBV/mono category @Hip?

 

[Hip]

Since my highest titers for Coxsackie B4 & Echo 11 were 1:160 (never 1:320) then I assume you would not consider them to be high titers?

Yes that's right, because they are less than 1:320 I think Dr Chia would not consider them elevated (not a significant active infection); although you are just on the borderline, so it will be interesting to see how Dr Chia interprets your results.

I just glanced through this transcript of Dr Chia's oxymatrine treatment of a 25 year old female patient, and she had titers of greater than 1:640 for CVB4. So that is a definite active infection.

And still confused how to vote in this poll!!! I assume I vote in the EBV/mono category @Hip?

Yes, based on what you have said, I think a vote for "I HAVE CRIMSON CRESCENTS and had a mononucleosis onset to my ME/CFS" seems appropriate.

One thing I understand Dr Chia does thoroughly is go through the patient's medical history (particularly of infections); he likes to ask lots of questions about your history; if your ME/CFS did appear as a result of mononucleosis, and since you coxsackievirus B / echovirus titers are less than 1:320, perhaps he might conclude that your ME/CFS is a result of EBV infection, rather than coxsackievirus B / echovirus. But I really have no idea; it's his clinical experience that will come into play.

 

[Gingergrrl]

Yes that's right, because they are less than 1:320 I think Dr Chia would not consider them elevated (not a significant active infection); although you are just on the borderline, so it will be interesting to see how Dr Chia interprets your results.

I just glanced through this transcript of Dr Chia's oxymatrine treatment of a 25 year old female patient, and she had titers of greater than 1:640 for CVB4. So that is a definite active infection.

Yes, it seemed that the titers were right on the borderline and no where near 1:640. Will definitely let you know what happens after appt but it's still over a month away.

Yes, based on what you have said, I think a vote for "I HAVE CRIMSON CRESCENTS and had a mononucleosis onset to my ME/CFS" seems appropriate.

okay, that's what I thought and will put in a vote for good old mono/EBV . But I know I had other triggers, too, like severe mold/mycotoxin exposure, FQ antibiotic toxicity, etc. And I mean triggers of my specific illness whatever it turns out to be and not posting these to debate them, just to explain that EBV was not my only trigger.

One thing I understand Dr Chia does thoroughly is go through the patient's medical history (particularly of infections); he likes to ask lots of questions about your history; if your ME/CFS did appear as a result of mononucleosis, and since you coxsackievirus B / echovirus titers are less than 1:320, perhaps he might conclude that your ME/CFS is a result of EBV infection, rather than coxsackievirus B / echovirus. But I really have no idea; it's his clinical experience that will come into play.

I think a lot will depend on what the most recent titers show as well. I know there is no specific anti-viral for enteroviruses but I took famvir at solid dose for eight months with no improvement. Am really starting to think that all the viral titers are a red herring in my own case.

@Hip or @halcyon do you know if Dr. Chia feels that a particular virus (herpes or enterovirus family, etc) makes one more prone to developing MCAS or unrelated? Does he have MCAS patients? I'm thinking that he must statistically.

 

[halcyon]

@Hip or @halcyon do you know if Dr. Chia feels that a particular virus (herpes or enterovirus family, etc) makes one more prone to developing MCAS or unrelated? Does he have MCAS patients? I'm thinking that he must statistically.

I'm sure he has patients with MCAS but I've never heard him speak about it.

 

[teacup]

Are these crimson crescents or just a raw looking throat?

I am very scared about CFS. I've only experienced significant fatigue for a couple weeks for now, but I've had POTS for about a year or so...however exercise always made me better and fatigue was pretty minimal so that does not make sense with CFS having PEM.

These definitely seem like red crescents to me and I feel so lethargic lately. I think I have had herpangina as I previously had some white sores in the throat, some mouth ulcers, and a sore throat. My boyfriend got the same thing (sore throat + ulcers in throat) after. I understand this is normally caused by Coxsackie A, and the one to worry about is Coxsackie B, but it still could be B. The sores have since cleared and my throat only feels a little bad now.

I feel like my throat was like this even before that though (with the red crescents)....I remember seeing it this way a couple times.

I get such a sinking feeling the more they look like crescents. What do you all think?

 

[halcyon]

I am very scared about CFS. I've only experienced significant fatigue for a couple weeks for now, but I've had POTS for about a year or so...however exercise always made me better and fatigue was pretty minimal so that does not make sense with CFS having PEM.

I wouldn't freak out at this point. Even if you did have a coxsackie B infection it doesn't mean you'll get ME for sure. Some lingering fatigue after the acute infection is probably normal. We still shed enterovirus in the stool for up to two months after the acute infection. Once the acute symptoms clear up the body is still fighting the virus for a while so some lingering fatigue is understandable. The best thing you can do for yourself right now is probably to take it easy, avoid major stressors, and not exercise.

I get such a sinking feeling the more they look like crescents. What do you all think?

Hard to tell from the picture. To me it looks more like the whole tonsil is red.

 

[Hip]

@teacup
Lovely yawn!

The crimson crescents I have seen on the other thread on this subject, such as these crimson crescents, tend to be quite well defined lines (roughly half a cm wide) of red or purple running parallel with the arches at the back of the soft palete.

Hard to say whether yours is just some throat soreness and inflammation, or crimson crescents. I have only seen the few examples of crimson crescents (on the other thread), so don't really have much experience of the variety they come in.

 

[teacup]

maybe these pictures are better? They do seem to have a defined crescent shape to me, but of course I am biased. Also, I apologize for not doing well with "quoting things" and "replying to specific people" on here, I am not very forum-savvy.

It's true that the fatigue and redness could be remnants of coxsackie-caused herpangina that will resolve, as most do, instead of leading to CFS. I just get wary because I've struggled with dizziness for a year (which, weirdly, has been gone for the weeks that I've felt tired).