Who's Had Their Coxsackie B Virus and Echovirus Antibody Titers Tested at ARUP Lab?

[Hip]

Do the number of coxsackievirus B and echovirus serotypes present relate to your CFS severity?

As many people know, Dr John Chia found that ARUP Lab is the only commercial lab in the US that provides antibody testing sensitive enough to measure the low levels of antibodies to coxsackievirus B and echovirus present in CFS patients.

If you have been tested for coxsackievirus B and/or echovirus at ARUP Lab, can you kindly post your ARUP Lab antibody titer results here (and any other viruses or other microbes that you have been tested positive for).

I would like to test the idea that the more coxsackievirus B and echovirus serotypes a person has in their body, the more severe their CFS might be.

So as well as the ARUP lab titers, could you also kindly indicate where you are on the Karnofsky scale (see below) in terms of your CFS severity, and state roughly the number of years you have had CFS.

Can you also indicate if you have any specific additional symptoms in your "portfolio" of CFS symptoms. For example, indicate if you have strong allergies or MCS (multiple chemical sensitivity), anxiety symptoms, anhedonia or depression, POTS (postural orthostatic tachycardia syndrome) or any other symptom that you feel specifically characterizes your own "brand" of CFS.


Karnofsky Scale (an index of disease severity)

100 Able to work. Normal; No complaints; No evidence of disease.
90 Able to work. Able to carry on normal activity; Minor symptoms.
80 Able to work. Normal activity with effort; Some symptoms.
70 Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 Disabled; dependent. Requires occasional assistance; cares for most needs.
50 Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 Severely disabled; dependent. Requires special care and assistance.
30 Severely disabled. Hospitalized, death not imminent.
20 Very sick. Active supportive treatment needed.
10 Fatal processes are rapidly progressing

 

[globalpilot]

I'm surprised noone responded to this. Maybe not many are doing this test.

I'm making arrangments to have it done in the next few weeks and will hopefully have results at my Nov 22 appointment.

how about you ? Did you have the titres measured ?

I'm a 60 on the scale

 

[Hip]

I've had some Coxsackie B virus (CVB) and echovirus (EV) testing done, but unfortunately not at ARUP Labs. I understand that only ARUP's CVB and EV tests are sensitive enough to measure these viruses in the chronic, low level "smoldering" infections of CFS patients.

I believe that ARUP have some sort of special testing technology that allows them to provide a more sensitive test.

Do you know the cost of getting these CVB and EV tests at ARUP Labs, by the way, or did you get through your insurance?

 

[globalpilot]

I don't know the cost yet. I'll know when I get it done and will let you know.

I have heard of a few having negative titres at other labs, but positive at ARUP.

 

[Hip]

I don't know the cost yet. I'll know when I get it done and will let you know.

I have heard of a few having negative titres at other labs, but positive at ARUP.

Yes, since very few viral particles are made in chronic low level enterovirus infections of CFS, the body's antibody response is correspondingly low, so only a very sensitive test can detect these low levels of antibodies made by the body.

Of course, the viral particle side of an enterovirus infection is only half the story: there is a second arm to an enterovirus infection, and this second arm consists not of viral particles, but of naked strands of ssRNA and dsRNA that live inside human cells as an intracellular infection. It may well be that this intracellular RNA infection is what is causing a lot of the pathologies in ME/CFS.

 

[Paul M]

Not sure if this is still active or a better recent thread, but just got back some Coxsackie B titres:
Type 2 was 1:40
Type 3 was 1:80
Everything else was <1:10

Now to figure out what it means.

 

[Hip]

Titers fall in the sequence: 1:10 ... 1:20 ... 1:40 ... 1:80 ... 1:160 ... 1:320 ... 1:640 ... 1:1280 ... etc

Or else into the sequence: 1:8 ... 1:16 ... 1:32 ... 1:64 ... 1:128 ... 1:256 ... 1:512 ... 1:1024 ... etc

The higher numbers towards the right of these sequences indicate higher levels of infection. So for example, a result of 1:640 indicates more viral activity than a result of 1:80.

If the titer level of your infection is high enough, then you have an active infection going on. If the titer result is slightly lower, then you have the virus in your system, but the infection is not active, or less active. If the titer result is very low, it indicates that you don't have the infection at all (it is not in your body at all).

Usually in your lab results, it will tell you what the lab considers to be an active infection.

Did you have your lab tests done at ARUP Lab? If so, titers of 1:320 and higher are good indicators of an active infection. Reference: here.

 

[Paul M]

Apparently, the tests were done at Focus Diagnostics. Any idea on the quality of this lab?

 

[Hip]

Apparently, the tests were done at Focus Diagnostics. Any idea on the quality of this lab?

I know that some year ago, Dr John Chia, who is a leading expert in enterovirus-associated ME/CFS, found that nearly all the labs he tried could not measure the pretty low levels of coxsackievirus B and echovirus present in ME/CFS patients, except for ARUP Lab.

That is to say, Chia found that with his ME/CFS patients' blood, all labs except for ARUP Lab would come back with low titer results, indicating no infection. These low titer results were due to lack of sensitivity of the labs in detecting low-level chronic infections. Only ARUP had sensitive enough testing to detect these viruses in chronic infections.

So Focus Diagnostics may a good lab, but here we are specifically looking at a lab's ability to measure the lowish levels coxsackievirus B and echovirus antibodies in the blood of ME/CFS patients with chronic infections.

But the fact that Focus Diagnostics has actually found some CVB2 and CVB3 in you at titer levels of 1:40 and 1:80 respectively, suggests that they do have the sensitivity to detect these viruses.

In any case, I think such lab results are best interpreted by an expert ME/CFS doctor like Dr Chia, who is testing patients every day, and so knows exactly what is considered to be significant result.

 

[Paul M]

very helpful, thanks Hip

 

[Emootje]

Tested positive for Coxsackie B3:

 

[jstefl]

I have been thoroughly tested.

I started by having a tissue sample sent to Dr. Chia. A nice picture came back showing that more than 50% of the cells had viruses in them.

I then asked for a blood sample to be sent to ARUP. The clinic, instead of sending my blood to ARUP, sent it to Focus, who reported no viruses found. Since I had a picture of the viruses, I knew that this was not true.

The clinic then agreed to redo the blood draw and send it to ARUP. The results came back positive this time.

It showed, Coxsackie B type 4 > 1:640
Coxsackie B type 5 1:160
Echovirus type 11 1:160

All others were <1:10

The ARUP tests were done in June of 2010. At that time, I had been taking Oxymatrine, and later, Equilibrant for over two years. So, if the Equilibrant is helping, it is possible that the titers were higher at one time, but I will never know.

My clinic, Mayo, redid the test at their expense, but has refused to do it again, so I am left in the dark for any future testing. I have increased my dose of Equilibrant after watching the King interview with Dr. Chia. I have been taking 4 per day for about a year and a half, and have decided to slowly increase that to as high as I can tolerate.

I don't know how to feel about the Equilibrant at this point. I feel worse when I stop taking it, but I don't seem to be improving much when I do. If I stop, I almost immediately begin to have severe stomach distress. I reach for Zantac at least once, and sometimes several times a day. This distress stops very soon after I resume taking Equilibrant. Other than the improvement of the stomach distress, I don't see any other improvements.

Perhaps a higher dose will help.I started on White Tiger Oxymatrine before the Equilibrant was available, and switched over to Equilibrant after it was available. It took some time to get used to the Equilibrant, and it is about double the cost, so I stopped at 4 per day to keep the cost down. I will give a higher dose a reasonable try.

Hope this helps.

John

 

[Hip]

I have been told by one person who got tested at both ARUP Lab and Focus Diagnostics that Focus seemed to have some cross reactivity across the coxsackievirus B and echovirus serotypes, while ARUP were able to sharply identify the specific serotypes present.

 

[Marlène]

Tested at Infectolab, Augsburg, Germany

Positive for Coxsackie B1 1:800 (ref < 1:100)

Also positive for EBV, CMV, Parvo, Adeno, Mycoplasma, chlamydia pneumonia + 1.371 (ref <0.8=neg;>1.1=pos), bartonella in 2009, low positive for babesia

 

[citybug]

What is usually the issue with tolerating the equilibrant? I started taking some, 2 up to 3/day. I didn't notice anything while taking, but now can feel a previous sore spot in my gut. Does it cause inflammation? My gut issue also could be food or cutting back on tumeric related. Thanks.

 

[halcyon]

@Hip, my ARUP results:

Coxsackie B1 <1:10
Coxsackie B2 <1:10
Coxsackie B3 1:40
Coxsackie B4 <1:10
Coxsackie B5 <1:10
Coxsackie B6 <1:10

Echovirus 6 1:40
Echovirus 7 <1:10
Echovirus 9 <1:10
Echovirus 11 <1:10
Echovirus 30 1:320

I also tested positive for HHV6 (antibody titer is 3.36, not sure if this indicates current or past infection) and past EBV infection. I tested negative for Coxsackie A/B and Echovirus at Focus labs 5 months after becoming ill. This is expected because they use complement fixation on these tests which is only valid during the acute phase of the infection.

I am a 60 on the Karnofsky scale. I've been sick since January of this year.

My symptoms are pretty consistent with chronic enteroviral infection per the Enterovirus Foundation site and others; anxiety, labyrinthitis, tinnitus, sinus congestion and post-nasal drip, intermittent low-grade fever, gastrointestinal issues, shortness of breath, muscle fasciculations and cramping, and tender lymph nodes. The symptoms have cycled in severity since becoming ill and exertion causes PEM and a worsening of symptoms.

 

[Gingergrrl]

@halcyon @Hip and @jstefl

I am reviving this old thread to get some more info about these enterovirus tests.

I did these specific tests through ARUP labs and it took over a month to get the results back but I finally got them today. I was wondering if you guys could offer your interpretations (and I of course will be speaking with my doctor and am not taking anything here as medical advice.)

On Coxsackie B Virus, Type 4, my titer is 1:40 (and all other Coxsackies are negative at <1:10 per range)

On Echovirus 11, it was flagged as abnormal with titer at 1:160 (and it should be under 1:40 per range.) All other echoviruses are negative at <1:10 per range.

Thank you for any feedback.

 

[Never Give Up]

@halcyon @Hip and @jstefl

I am reviving this old thread to get some more info about these enterovirus tests.

I did these specific tests through ARUP labs and it took over a month to get the results back but I finally got them today. I was wondering if you guys could offer your interpretations (and I of course will be speaking with my doctor and am not taking anything here as medical advice.)

On Coxsackie B Virus, Type 4, my titer is 1:40 (and all other Coxsackies are negative at <1:10 per range)

On Echovirus 11, it was flagged as abnormal with titer at 1:160 (and it should be under 1:40 per range.) All other echoviruses are negative at <1:10 per range.

Thank you for any feedback.

Reciting which entroviruses my son has always sounds like calling out Bingo letters "Coxsackie B7", always makes me laugh a little.

On a serious note, if you are anywhere near Torrance, CA, and I think you are, why not go see Dr. Chia, the king of Enteroviruses? He has very strong opinions about which enteroviruses make people sick, and in which ways each one makes people sick. He is really helping my son to improve.

Good luck.

 

[Hip]

On Coxsackie B Virus, Type 4, my titer is 1:40 (and all other Coxsackies are negative at <1:10 per range)

On Echovirus 11, it was flagged as abnormal with titer at 1:160 (and it should be under 1:40 per range.) All other echoviruses are negative at <1:10 per range.

According to the Enterovirus Foundation website, in these ARUP Lab tests for coxsackievirus B and echovirus, titers of 1:320 and higher are indicative of a significant active infection.

Titers from ARUP Lab are measured on the following scale (in which I have put the titers that indicate an active infection in red):

1:10 ... 1:20 ... 1:40 ... 1:80 ... 1:160 ... 1:320 ... 1:640 ... 1:1280... etc. Higher titers in this direction -->>

So your results would suggest that your CVB4 at 1:40 is not an active infection, but your EV11 at 1:160 is on the borderline of being a significant active infection, and so I guess this EV11 possibly might be contributing or causing your ME/CFS symptoms.

However, Dr Chia is the expert in interpretation of these ARUP Lab results.

You can read a blog article here of another ME/CFS patient who had these ARUP Lab tests, which explains how they are interpreted. Again this article mentions that Chia interprets titers of 1:320 and above in ME/CFS patients as significant.

Here is an example of the oxymatrine treatment Dr Chia uses, and its effect in lowering enterovirus titers and improving ME/CFS symptoms:

A 59 year-old Japanese-American male with episodes of diarrhea while traveling to Tonga developed severe respiratory infection soon thereafter. The symptoms consisted of fevers to 105° F., night sweats, diffuse myalgia, tachycardia, fatigue, sinus congestion and cough, and unresponsiveness to antibiotics. The patient developed profound fatigue thereafter and went on total disability three months after the onset of symptoms. Initial Coxsackie B virus (CBV) 3, CVB4 and echovirus 9 antibody titers were 1:320, 1:160, 1:80 (normal <1:10), respectively.

The patient could not work for the next 18 months. He was started on oxymatrine at 300 mg twice a day (bid). After taking oxymatrine for two months, he was able to take short walks, but still exhausted after one hour of activity requiring five hour naps. At the end of three months of therapy, he started having fevers of 104-105° F. for several days with marked decrease in diffuse myalgia. Three months after the patient finished taking the medication, he went back to full-time work. During therapy, laboratory studies including CBC and complete chemistry panel were normal except mildly elevated calcium levels, which resolved after stopping hydrochlorothiazide, which the patient also started about the same time for hypertension. CVB3, CVB4 and echovirus antibody three months after therapy were 1:160, 1:160 and 1:20, respectively. The patient had not relapsed for at least one year after therapy.

Source: here.

Here is a post by @Timaca about the reduction in enterovirus titers from oxymatrine treatment:

I am not on Equilibrant, I'm on oxymatrine that comes from China. I take 2 tablets, twice a day, which I *think* amounts to 400 mg oxymatrine a day. B3 has dropped from 1:320 to 1:40, then back up to 1:160 (I guess it likes to dance around a bit), B4 has dropped from >= 1:640 to 1:80, B5 from 1:160 to 1:20. I'm tested at ARUP lab.

 

[aquariusgirl]

oK, which docs are ordering these labs thru Arup other than Chia?