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

Hip

Senior Member
Messages
16,547
Likes
36,094
Big confusing fiasco getting the test codes, not 100% sure they were right. Have to wait and see.
They often get it wrong the first time: LabCorp or Quest will do the test in-house, which is the wrong test. So when you get your results, ensure that it says ARUP on the results page, otherwise it will not be the right test.

I actually sent an email to LabCorp earlier this month, asking them to please organize their test coding system so as to avoid the confusion over the ARUP tests. So far I have only got a confirmation of receipt of my email, but no response from LabCorp on the issue. This is possibly because I am in the UK, and am not a LabCorp customer.

If anyone in the US would like to email LabCorp over this constantly vexing problem, here is a copy of the email I sent, which you can use if you like:
Dear Sir

Perennial problem of ordering ARUP Lab coxsackievirus B and echovirus antibody tests via LabCorp

I have seen many patients experience great difficulty in trying to order through LabCorp the ARUP Lab coxsackievirus B and echovirus micro-neutralization antibody tests performed on blood serum (ARUP Lab is in Utah). The tests in question are these: http://ltd.aruplab.com/tests/pub/0060055 http://ltd.aruplab.com/tests/pub/0060053

When patients try to order these two test through LabCorp, invariably they get given the wrong test, with the test being incorrectly performed in-house by LabCorp, rather than having the serum sent to ARUP for testing. This happens time and time again, and it's very frustrating for patients, who have to then get a second blood draw done, in order to try to get their serum tested by ARUP.

The problem I believe is that there are no LabCorp codes available to order these ARUP Lab coxsackievirus B and echovirus antibody tests on serum samples.

There is a LabCorp code for an ARUP Lab coxsackievirus B micro-neutralization test on cerebrospinal fluid, code 816869, but as I understand, if you want these tests done on serum, there are no LabCorp codes available.

If you like, you can read an online forum thread, in which many patients are becoming quite frustrated, struggling with getting the right LabCorp code to get the ARUP Lab coxsackievirus B and echovirus antibody tests done on serum — see here: https://forums.phoenixrising.me/threads/59438/page-3#post-990627

Please can you do something about this, and ensure that codes for these two ARUP Lab antibody tests performed on blood serum are set up and available for patients and doctors to use.

Many thanks indeed.

Best Regards
 

EddieB

Senior Member
Messages
592
Likes
724
Location
Northern southern California
Hip,
First off, thank you so much for all your efforts here, very much appreciated!

The LabCorp staff were on the phone with ARUB lab getting the codes, which would lead one to believe they got it right. However, my concern is with the price they charged, $208.00. I’ve read that test should cost something like $400.

They also did a Echovirus Serum test that was sent to BioAgilytix. That test was $638.00.

Both of these tests were recommended to my doctor by Dr Chia’s staff.
 

Hip

Senior Member
Messages
16,547
Likes
36,094
my concern is with the price they charged, $208.00. I’ve read that test should cost something like $400.
Yes, the ARUP Lab coxsackievirus B test is something like $440.




They also did a Echovirus Serum test that was sent to BioAgilytix. That test was $638.00.
Cambridge Biomedical was bought by BioAgilytix, and Dr Chia recommends the Cambridge Biomedical echovirus test, so you are fine there.



The LabCorp staff were on the phone with ARUB lab getting the codes, which would lead one to believe they got it right.
You'd think so, but they screw up nearly every time.



Here are the LabCorp codes Dr Chia actually uses for his coxsackievirus B and echovirus antibody neutralization tests: this is a copy of the LabCorp test requisition form actually filled out by Dr Chia for an ME/CFS patient:
1582589663504.png


You can see that Dr Chia has written on the form: "Please do not alter, modify, change the test code on coxsackie B virus antibodies. Reference will accept serum".


The odd thing is that if you put the 816869 LabCorp code for the ARUP coxsackievirus B test into the LabCorp Test Menu on their website, it does not recognize this code (but it recognizes other codes from the above requisition form).
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
Abnormal results here...

Karnofsky Scale - I really don't fit anywhere on this scale. But if pressed, I guess I'd say I'm a 80? I can function at like 80%, 90% even some times. When I get tired, I can be bedridden for 3 days straight. 2-3 yrs CFS.

Only other symptoms for me have been hair loss, and weight gain. Really, it's just the crazy fatigue ride.

1592967072256.png

1592967078560.png
 
Last edited:

Hip

Senior Member
Messages
16,547
Likes
36,094
By Dr Chia's criteria, you would definitely have active echovirus 11, and also probably CVB3 and CVB4. Dr Chia says antibody levels of :1:160 to 1:320 or above are indicative of chronic active infection.

So welcome to the enterovirus ME/CFS club!
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
By Dr Chia's criteria, you would definitely have active echovirus 11, and also probably CVB3 and CVB4. Dr Chia says antibody levels of :1:160 to 1:320 or above are indicative of chronic active infection.

So welcome to the enterovirus ME/CFS club!
Yea, well, f**k me right? btw, I edited my thing above to clarify "other symptoms", which you asked about in OP.

Just saw these results like 3 hrs ago...

Well, now what
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
Get the flip outta here, you created that?!

That's like the first thing I bookmarked, which was 1 of like maybe 4 of 5 web pages. That's great stuff!

Sounds like anti-enterovirus rugs are exactly what I need! Put those suckers on the floor of every room in my house.
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
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.
Also saw, @Gingergrrl , that you said you have Hashimoto's in this thread. Seems we have abnormally similar things going on. It's possible we might be on the same path.

I have Hashimoto. Just got my ARUP results back, showing high Echovirus Type 11. Seems like more than just a coincidence.

Echo 11 was the ONLY EV Type that was abnormal, I'm at 1:640. All other EV Types were normal. I would very much like to hear more from you and see if we have any more connections including symptoms, timeline, severity, other abnormal tests, etc?

Out of curiosity, have you done EBV tests? Would be crazy if yours were anything like mine....

1592972698404.png
 
Last edited:

sometexan84

Senior Member
Messages
1,006
Likes
1,860
Enterovirus is probably the most important virus to test for in ME/CFS, yet I get the impression only a few patients on this forum have been properly tested for this virus
The guide you made, that's the ONLY reason I sought out these tests. And as you know, my results were quite abnormal. So thanks to you I've discovered a new MASSIVE piece of the puzzle.

If this helps lead me to my cure, I'm going to hunt you down so I can give you a hug, and like a gift basket. Filled with anti-inflammatory supplements... and like, gluten-free snickerdoodles
 

Gingergrrl

Senior Member
Messages
15,712
Likes
46,510
Also saw, @Gingergrrl , that you said you have Hashimoto's in this thread. Seems we have abnormally similar things going on. It's possible we might be on the same path.
I do have Hashimoto's (diagnosed in 2013) and still have it, and as far as I know, I will have it for life. It is unknown what the original infection was that caused the Hashi's but it certainly could have been the severe Mono/EBV that I had in 2012.

I have Hashimoto. Just got my ARUP results back, showing high Echovirus Type 11. Seems like more than just a coincidence.
I've never had a doctor suggest that enterovirus can cause Hashi's (but maybe it can and I am just not aware)? As far as I know, even if you could determine the original infection that led to Hashi's (and other autoimmunity if you have it like I do?), there is nothing you can do to change it except to treat the autoimmunity itself like I did. I am not sure if that is what you are asking and please feel free to send me a PM if helpful.

Actually... now I'm not sure if you are asking about treating the original (past) infection, active infections (if you have them?), or treating Hashi's and other autoimmunity? In my case, the EBV and any other infections were long gone and it all flipped into massive autoimmunity. Once my doctor figured this out, I was able to get the right treatment that led to remission (of my overall illness, not Hashi's, which I'll have for life and take meds for).

Echo 11 was the ONLY EV Type that was abnormal, I'm at 1:640. All other EV Types were normal. I would very much like to hear more from you and see if we have any more connections including symptoms, timeline, severity, other abnormal tests, etc?
In my case the Echovirus 11 titer from ARUP (if I remember correctly from 2015) was never higher than 1:160 and was ultimately considered to be measuring a past infection and was not something that I treated.

You asked about my "symptoms, timeline, severity, and other abnormal tests" and this would literally take pages for me to fully explain! I had several immune system triggers (neurotoxic reaction to Levaquin, then severe Mono from EBV after a minor surgery, and then very extreme exposure to toxic mold & mycotoxins in a prior rental). By early 2013 I had severe (undiagnosed) POTS & Dysautonomia with insanely low blood pressure 80/50 and very high tachycardia in the 160's & 170's on a daily basis. By the end of 2013, I was diagnosed w/Hashi's & POTS.

By mid 2014 I was using a wheelchair b/c I had severe shortness of breath & muscle weakness. It was not PEM by any definition that I have ever seen but it was progressive and it was horrifying. I used a wheelchair for almost 4 yrs b/c of the shortness of breath, muscle weakness & POTS. In addition, in early 2015, I developed severe MCAS & allergic reactions and was hospitalized to try to get the anaphylaxis reactions under control.

Then I had testing at Stanford including blood work sent to Mayo Clinic which discovered I had the LEMS autoantibody (Lambert Eaton Syndrome) which is an autoantibody that blocks the calcium channel and it's functioning. I also tested positive for GAD65 autoantibody and for seven Cell Trend Autoantibodies and was diagnosed w/Autoimmune POTS. I already had the two Hashi's autoantibodies so I then had 11 autoantibodies total which was crazy. So by early 2016, my doctor realized that just about everything I was dealing with was autoimmune and my immune system was having insane allergic reactions to all food in 2015 & 2016 until I started high dose IVIG.

The IVIG stopped the allergic reactions & anaphylaxis by end of 2016 which have never returned. I also started Rituximab mid 2017 and within nine months (by May 2018), I no longer had to use the wheelchair. My muscle strength and breathing strength returned to normal and this has remained in remission. The last thing to go into remission from the IVIG & Rituximab was the remaining POTS symptoms.

In my case, I do not believe that the elevated enterovirus titers had anything to do w/my illness and that the ARUP tests were picking up on a past infection (probably from childhood). All of my doctors suspect that it was the EBV virus (from the severe Mono) that wrecked havoc on my body and led to all the autoimmunity (combined w/the toxic mold exposure).

Out of curiosity, have you done EBV tests? Would be crazy if yours were anything like mine....
I have not done them in many years but at the time they were insanely high titers (much higher than the enterovirus titers in my case). My EBV titers remained high for several years after having Mono (all five of them: IgM, IgG, EA, etc) until they finally became normal (maybe in 2016, I honestly cannot remember). Initially my doctor treated the EBV titers and I took Famvir for 8 months (in 2014 & early 2015 which did not help) and then I briefly tried Valcyte (which I was not able to tolerate even at a micro dose).

If this helps lead me to my cure, I'm going to hunt you down so I can give you a hug, and like a gift basket. Filled with anti-inflammatory supplements... and like, gluten-free snickerdoodles
I know you were talking to Hip but can I have some of the gluten-free snickerdoodles, too, for typing that whole saga? (I am just joking ;) )
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
I do have Hashimoto's (diagnosed in 2013) and still have it, and as far as I know, I will have it for life. It is unknown what the original infection was that caused the Hashi's but it certainly could have been the severe Mono/EBV that I had in 2012.
My EBV titers remained high for several years after having Mono (all five of them: IgM, IgG, EA, etc) until they finally became normal (maybe in 2016, I honestly cannot remember)
I'm splitting up my replies in 2 separate posts, to simplify.

Ok, so, I personally think you should get tested again for EBV, if you have all this, and haven't been retested in years. The potential damage it can do is so great, better safe then sorry. Plus, I am curious.

Another reason you may want to get re-tested (and you guys may already know all this but) is because your tests showed high IgM. There's a million places online that say this means it's a recent primary infection, meaning it's the first initial infection, and one of the earlier EBV stages at this point.

And really, all you need to test for (or the most meaningful) is the EA (Early Antigen) IgG. And if you Google EA IgG, you will NOT always see this informative tidbit... but the EA IgG indicates EBV is actively replicating. You might be positive here, and actually negative for the VCA IgM. And as such, EA is great for monitoring the success of treatment, as numbers go down.

Lastly, I bet a million dollars EBV is in your thyroid tissue. If its not actively replicating, it could still be dormant for now in your thyroid tissue, which you could find in a thyroid tissue specimen analysis.

I am NOT of the belief that (EBV-induced) Hashimoto's is there for life. I agree with a lot of what's said in this article, The Mysteries of the Thyroid, especially regarding the EBV and Hashimoto/hypothyroidism. In fact, I recommend everyone w/ similar condition to bookmark this article.
 

Gingergrrl

Senior Member
Messages
15,712
Likes
46,510
Ok, so, I personally think you should get tested again for EBV, if you have all this, and haven't been retested in years. The potential damage it can do is so great, better safe then sorry. Plus, I am curious.
I was tested for EBV for several years and the titers were very high and then they finally went negative and stayed negative. EBV definitely did great damage to my body but it flipped into autoimmunity. I don't have an active infection to treat now. My EBV titers went negative around 2015 or 2016 (I can't remember exact year) and then I re-tested literally every virus known to man (in addition to EBV) in mid-2017 before starting Rituximab and they were all negative (except IgG but that is normal once you've had EBV and it is inactive). But the PCR, IgM, EA, etc, have been negative for me for several years.

Lastly, I bet a million dollars EBV is in your thyroid tissue. If its not actively replicating, it could still be dormant for now in your thyroid tissue, which you could find in a thyroid tissue specimen analysis.
I have no doubt that dormant EBV would show up in thyroid tissue (and other places) b/c once you have EBV, it remains in your body for life. If I were to have a thyroid biopsy for some other reason, I will definitely ask for this test but I would not do a biopsy specifically to see if EBV is there. I am not sure what you are suggesting (other than taking anti-virals again?) but I took them for most of 2014 into 2015 and they did not help me.

To clarify, they may have helped in making the titers go negative but they did not help my symptoms and may have even been a factor (as an immune modulator/ stimulant) that pushed me into the insane autoimmunity (although I will never know this for sure and I had other factors like the toxic mold exposure that pushed me into severe MCAS in 2015).

I am in remission from my current treatments and am not looking to add or change anything at the moment (unless something changes with my symptoms or I lose this remission and then that changes everything)! I stopped IVIG mid-2018 and stopped Rituximab end of 2019.
 

sometexan84

Senior Member
Messages
1,006
Likes
1,860
@Gingergrrl So, regarding our similar conditions...

I've never had a doctor suggest that enterovirus can cause Hashi's
Actually... now I'm not sure if you are asking about treating the original (past) infection, active infections (if you have them?), or treating Hashi's and other autoimmunity?
Actually, I wan't meaning to imply this causes that or anything. Or really even asking specific treatments in that way. Really, I'm just curious in general for now, about our what our common denominators are.

You
✔ EBV
✔ Hashimoto
✔ Echovirus Type 11
✔ Comorbid Autoimmune
✔ Coxsackie B4
---------------------
✔ POTS
✔ Toxic Mold Exposure
✔ Dysautonomia
✔ MCAS
✔ LEMS
✔ GAD65
✔ Anaphylaxis
✖ Coxsackie B3
? Psoriasis
? Sleep Apnea

Me
✔ EBV
✔ Hashimoto
✔ Echovirus Type 11
✔ Comorbid Autoimmune (I have at least 2 thus far, Hash + Guttate Psoriasis)
✔ Coxsackie B4
---------------------
POTS - ?? (never tested)
Toxic Mold Exposure - ?? (never tested, but plan to since I got bad results on that contrast eye test thing)
Dysautonomia - ?? (never tested)
MCAS - ?? (never tested)
LEMS - ?? (never tested)
GAD65 - ?? (never tested)
✖ Anaphylaxis - pretty sure this is a negative for me
✔ Coxsackie B3
✔ Psoriasis (Guttate Psoriasis)
✔ Sleep Apnea
 
Last edited:

sometexan84

Senior Member
Messages
1,006
Likes
1,860
I was tested for EBV for several years and the titers were very high and then they finally went negative and stayed negative. EBV definitely did great damage to my body but it flipped into autoimmunity. I don't have an active infection to treat now. My EBV titers went negative around 2015 or 2016 (I can't remember exact year) and then I re-tested literally every virus known to man (in addition to EBV) in mid-2017 before starting Rituximab and they were all negative (except IgG but that is normal once you've had EBV and it is inactive). But the PCR, IgM, EA, etc, have been negative for me for several years.



I have no doubt that dormant EBV would show up in thyroid tissue (and other places) b/c once you have EBV, it remains in your body for life. If I were to have a thyroid biopsy for some other reason, I will definitely ask for this test but I would not do a biopsy specifically to see if EBV is there. I am not sure what you are suggesting (other than taking anti-virals again?) but I took them for most of 2014 into 2015 and they did not help me.

To clarify, they may have helped in making the titers go negative but they did not help my symptoms and may have even been a factor (as an immune modulator/ stimulant) that pushed me into the insane autoimmunity (although I will never know this for sure and I had other factors like the toxic mold exposure that pushed me into severe MCAS in 2015).

I am in remission from my current treatments and am not looking to add or change anything at the moment (unless something changes with my symptoms or I lose this remission and then that changes everything)! I stopped IVIG mid-2018 and stopped Rituximab end of 2019.
lol, fair enough :)
 

Gingergrrl

Senior Member
Messages
15,712
Likes
46,510
Really, I'm just curious in general for now, about our what our common denominators are.
I totally understand and I did EXACTLY what you are doing now back in 2014 & 2015. I was posting every day and researching 24/7 trying to figure out who I was the most similar to and what doctors they were seeing, what treatments they were doing, etc. It was literally like a full-time job for me. I don't post a lot now unless someone tags me or I have something useful to say ;)

POTS - ?? (never tested)
Toxic Mold Exposure - ?? (never tested, but plan to since I got bad results on that contrast eye test thing)
Dysautonomia - ?? (never tested)
Tachycardia - ?? (never tested)
MCAS - ?? (never tested)
LEMS - ?? (never tested)
GAD65 - ?? (never tested)
✖ Anaphylaxis - pretty sure this is a negative for me
If you had POTS and constant tachycardia in the 160's and 170's like I did you would know it (even though you might not know it was called "POTS" and might not have had a Tilt Table Test or other autonomic testing). You can do the "NASA Lean Test" at home to have some idea what your HR and BP are doing. If you had anaphylaxis you would also know (but you might be having lesser allergic reactions and not realize). I have no idea if any of that resonates for you?

As far as the other autoantibodies, you would not know unless you did the blood tests (and I had no idea and was shocked when I got the results). You might want to research some of the Mayo Panels for autoimmunity (DYS1, PAVAL) and also the Cell Trend Panels (from Germany). Since you already have two autoimmune diagnoses, it is definitely possible that you have more. How high is your ANA Titer (or is it negative)? Mine was 1:160, speckled pattern, but is now negative.

What symptoms do you have?
 

Pyrrhus

Senior Member
Messages
3,247
Likes
9,714
Location
U.S., Earth
By the way, anyone interested in how different viruses can cause Hashimoto's Thyroiditis may find the following review interesting:

Viruses and thyroiditis: an update (Desailloud and Hober, 2009)
https://link.springer.com/article/10.1186/1743-422X-6-5

Desailloud and Hober said:
Abstract
Viral infections are frequently cited as a major environmental factor involved in subacute thyroiditis and autoimmune thyroid diseases. This review examines the data related to the role of viruses in the development of thyroiditis.

Our research has been focused on human data. We have reviewed virological data for each type of thyroiditis at different levels of evidence; epidemiological data, serological data or research on circulating viruses, direct evidence of thyroid tissue infection.

Interpretation of epidemiological and serological data must be cautious as they don't prove that this pathogen is responsible for the disease. However, direct evidence of the presence of viruses or their components in the organ are available for retroviruses (HFV) and mumps in subacute thyroiditis, for retroviruses (HTLV-1, HFV, HIV and SV40) in Graves's disease and for HTLV-1, enterovirus, rubella, mumps virus, HSV, EBV and parvovirus in Hashimoto's thyroiditis.

However, it remains to determine whether they are responsible for thyroid diseases or whether they are just innocent bystanders. Further studies are needed to clarify the relationship between viruses and thyroid diseases, in order to develop new strategies for prevention and/or treatment.
(emphasisi and spacing added for readability)
 
Last edited:

sometexan84

Senior Member
Messages
1,006
Likes
1,860
@Gingergrrl Is POTS the same thing as Dysautonomia and Tachycardia ?

I have no idea if any of that resonates for you?
Note: I think it's noteworthy? to say up front that I caught all of this pretty early (am able to elaborate on why/how), and that when symptoms started and tests started coming in positive I was in my peak physical condition as health, exercise, and training was basically my #1 hobby (also able to elaborate here). Meaning, I'm concerned I haven't seen the worst of this, and that I have the opportunity to address potential conditions before they completely manifest.

The allergies and POTS don't particularly resonate w/ me. But I should probably stay on top of both and get tests done. Cause I worry that those are the types of things that might end up happening to me later on.

As far as the other autoantibodies, you would not know unless you did the blood tests (and I had no idea and was shocked when I got the results). You might want to research some of the Mayo Panels for autoimmunity (DYS1, PAVAL) and also the Cell Trend Panels (from Germany). Since you already have two autoimmune diagnoses, it is definitely possible that you have more. How high is your ANA Titer (or is it negative)? Mine was 1:160, speckled pattern, but is now negative.
Sounds like I need to start doing all these autoimmune tests. Any you feel might be top priority for starters?

ANA is negative for me.

What symptoms do you have?
1593043165315.png