Help Needed - Interpreting Lab / Test Results

[Dakota15]

Hi PR, hope everyone is hanging in there - reaching out today with a big favor. I've seen a few other posts asking for help to interpret lab/test results and I was extremely impressed at how many of you were able to help.

I'm reaching out today with that same favor - I received my lab results today that I got back from a CFS/ME Specialist that I recently visited. Before I have my next appointment to discuss (which is two weeks away), I was hopeful to get any interpretation that you may have at this time. I appreciate any help or thoughts you may have.

I put in parentheses (High) for any of the results that flagged as such.

Test Name: /Value: /Reference Range:

EBV Early Antigen Ab, IgG < 9.0 0.0 - 8.9 U/mL
Negative < 9.0
Positive > 10.0

EBV Ab VCA, IgG > 600.0 (High) 0.0 - 17.9 U/mL
Negative < 18.0
Positive > 21.9

EBV Ab VCA, IgM < 36.0 0.0 - 35.9 U/mL
Negative < 36.0
Positive > 43.9

EBV Nuclear Antigen Ab, IgG 263.0 (High) 0.0 - 17.9 U/mL
Negative < 18.0
Positive > 21.9

Cytomegalovirus (CMV) Ab, IgG 2.10 (High) 0.0 - 0.59 U/mL
Negative < 0.60
Positive > 0.69

Cytomegalovirus (CMV) Ab, IgM <30.0 0.0 - 29.9 AU/mL
Negative < 30.0
Positive > 34.9

Parvovirus B19, IgG 2.5 (High) 0.0 - 0.8 index
Negative < 0.9
Positive >1.1

Parvovirus B19, IgM 0.8 0.0 - 0.8 index
Negative < 0.9
Positive >1.1

HHV 6 IgG Antibodies 2.42 (High)
Negative < 0.76
Positive > 0.99

Again, thank you so much for any help and assistance - it means so much to me. Apologies for the formatting, not my best work there.

If you need any more additional information, I can certainly provide (as there were plenty of other tests ran) or I can help answer any questions.

Thank you,

Dakota

 

[Dakota15]

@Hip If you have any input please let me know

 

[Markus83]

No, I'm not Hip, but here's my 50 cents: I think the results don't tell you much, because most people do have IgG antibodies against those viruses. You should do IFT IgG testing (which give you a titer, e.g. 1:320) in order to see if you have hight titers (= maybe reactivation) or low titers (=old infection).

For Parvo you should do an IgG Western Blot to see if you have the NS1 band, which might give a hint that you have a chronic infection.

 

[Hip]

@Hip If you have any input please let me know

It's generally hard to interpret pathogen test results in ME/CFS, as the normal rules used by infectious disease specialists do not apply. IgG titers are often high in ME/CFS, and infectious disease specialists will typically ignore these, stating that they only represent a past infection. Whereas ME/CFS specialist will see high IgG as evidence of an ongoing chronic active infection.

So it really requires an ME/CFS specialist to interpret the results, as they will have their own threshold titer for determining chronic active infection. I have written to several ME/CFS specialists asking them for their criteria for diagnosing chronic active infection in ME/CFS, but so far from the replies I got, no one has been able to give me some concrete answers.

The exception is Dr John Chia, who states precisely the criteria he uses for diagnosing chronic active infection coxsackievirus B and echovirus infection in ME/CFS (you might consider getting tested for these two enteroviruses by ARUP Lab, the lab used by Dr Chia, as enterovirus testing is just as important as herpesvirus testing in ME/CFS).


Here is some info that I have been able to get from various studies and articles (it comes from my roadmap document):

Dr Dantini diagnoses chronic active infection in ME/CFS when IgG titers are at least 4 times the average titers healthy people get on the same test. Ref: 1 Unfortunately, lab results will not give you any info on the average titers of healthy people.

Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are elevated antibody titers in the EBV IgM VCA and/or EBV EA diffuse tests by ELISA. Refs: 1 2

Whereas Prof Jose Montoya says a Quest EBV IgG VCA titer of 1:640 or higher and a Quest EBV IgG EA titer of 1:160 or higher indicates an active EBV infection in ME/CFS. Ref: 1

Your EBV results show:
IgM VCA — Negative
IgG VCA — High
IgG EA — Negative

By Dr Lerner's and Prof Montoya's criteria, I believe you would not have a chronic active EBV infection.


I am guessing that all your other results are also negative for chronic active infection, because although some of your IgG titers are positive, they are not particular high. But really, you need to get an ME/CFS specialist to interpret the results.

If it turns out you do not have a chronic active infection with any of the herpesviruses linked to ME/CFS, you may still have a chronic active infection with enterovirus.

 

[Dakota15]

Thanks so much @Hip and @Markus83, it's very much appreciated.

Dr. Chheda from the Center for Complex Diseases will be interpreting these results, I'll let you know what an ME/CFS Specialist like herself interprets it as.

Regarding Dr. John Chia - if I remember right, he interprets those results only after when you come to visit him in Torrance, CA. I know you get the blood drawn prior (as long as it's 2 weeks before your appointment) and you can get your results from the labs sent to you but they won't be interpreted by Dr. Chia obviously until your in person appointment.

I wanted to get the labs drawn but my worry was I wouldn't know how to interpret if that makes sense - and then if I traveled to Torrance, CA all the way from the Midwest just to be told these didn't indicate an enterovirus or anything substantial.

Would you advise getting the labs drawn in any event (I put my name on Dr. John Chia's waiting list awhile ago)?

 

[used_to_race]

I wanted to get the labs drawn but my worry was I wouldn't know how to interpret if that makes sense - and then if I traveled to Torrance, CA all the way from the Midwest just to be told these didn't indicate an enterovirus or anything substantial.

Would you advise getting the labs drawn in any event (I put my name on Dr. John Chia's waiting list awhile ago)?

I think it would be worth it if your insurance will cover them. If your titers for some of these enteroviruses are high, you could try Equilibrant on your own - it's fairly cheap and almost never makes people permanently worse (although I have seen isolated cases here and there). If it works for you, then great.

I would also say that Chia is expecting news in the next couple months regarding some novel antiviral drugs in Europe that are effective against enterovirus. If these drugs are available soon, then maybe having your foot in the door with Chia would give you access to some kind of trial.

My personal opinion is that it's probably not worth it to go see Chia if you live in the midwest.

 

[Dakota15]

Appreciate your advice @used_to_race

Just curious, on the Equilibrant standpoint, is that not doctor prescribed then I presume?

 

[used_to_race]

Appreciate your advice @used_to_race

Just curious, on the Equilibrant standpoint, is that not doctor prescribed then I presume?

That's correct. You could buy Equilibrant online for like $47 a box, which should be enough to figure out if it's working for you or not. You can find lots of info if you search these forums. Chia advises to start at a low dose and work your way up. I can tell you what he told me, but obviously cannot give you personal medical advice because I'm no expert. You can also buy Oxymatrine from Alternative Medicine Solutions and that's pretty cheap too, but @Hip would be the person to ask about that.

My personal experience with Equilibrant is that it didn't help dramatically. I started at 1/4 tablet per day and got up to 2 tablets per day, which is where Chia told me to cap my dosage. Unfortunately it made me feel worse at this dosage and my liver enzymes were elevated, so I had to back off the dosage. I have no proof of this, but I think that Equilibrant helps me a tiny bit in lower doses like 1/4 or 1/2 tablet, and that may be due to the other herbal ingredients besides oxymatrine. It also includes Astragalus Root, Licorice, Shitake Mushroom, and some other stuff. I'm taking 1/4 Equilibrant per day for now, but will be seeing Dr. Chheda soon and I'll probably end up doing something different at that point.

 

[Hip]

Regarding Dr. John Chia - if I remember right, he interprets those results only after when you come to visit him in Torrance, CA. I know you get the blood drawn prior (as long as it's 2 weeks before your appointment) and you can get your results from the labs sent to you but they won't be interpreted by Dr. Chia obviously until your in person appointment.

I wanted to get the labs drawn but my worry was I wouldn't know how to interpret if that makes sense - and then if I traveled to Torrance, CA all the way from the Midwest just to be told these didn't indicate an enterovirus or anything substantial.

In the case of the ARUP Lab coxsackievirus B and echovirus antibody tests by micro-neutralization, Dr John Chia has publicized the threshold titers he uses to diagnose chronic active infection. So you could get these tests done yourself, or via your local doctor, and interpret the results yourself. See the coxsackievirus B section of the roadmap for details.

If you are positive for enterovirus, then oxymatrine, Epivir and tenofovir are treatments used by Dr Chia.

 

[Ema]

By Dr Lerner's and Prof Montoya's criteria, I believe you would not have a chronic active EBV infection.


I am guessing that all your other results are also negative for chronic active infection, because although some of your IgG titers are positive, they are not particular high. But really, you need to get an ME/CFS specialist to interpret the results.

I would agree with this. When Dr Lerner diagnosed me with HHV6, for example, my IgG was 43.66. My CMV IgG was 6, and he also considered this to be positive.

 

[Hip]

When Dr Lerner diagnosed me with HHV6, for example, my IgG was 43.66. My CMV IgG was 6, and he also considered this to be positive.

That's useful info. Though it's possible that the ranges used by the lab tests may have changed since you did your tests.

For use in my roadmap document, I was able to obtain the threshold titers used by specialists like Dr Lerner and Prof Montoya for diagnosing chronic active infection in ME/CFS, because these threshold titers were stated in published studies. However, what I found was that the lab tests changed their ranges, or changed notation.

So now these threshold titers quoted in my roadmap are out of date, and of little use (except in the case of Dr Chia's threshold titers).

So recently I started writing to the various ME/CFS specialists in the US, asking them what lab tests and what threshold titers they use to diagnose chronic active infection in ME/CFS, explaining that I wanted to put this info on the ME/CFS forums, as it would be very helpful for lots of patients. But as yet I've not got any replies that provided this info. But I am still waiting on some replies.

It would be very good to have this threshold titer info, as it would then allow ME/CFS patients, with the help of their local primary care physician, to order the right tests, and then be able to interpret them (so that they can prescribe the right antivirals or immunomodulators).

 

[Dakota15]

@Hip thanks so much again for your input.

In regards to Coxsackievirus B and Echovirus Infection, I assume there's no connection / causation with SIBO?

I ask because I just recently "tested positive for SIBO on the evaluation for Hydrogen" (and not methane) and just thought I would ask since Coxsackievirus and Echovirus are related to the gastrointestinal tract....or so I thought from viewing the roadmap and research.

 

[Hip]

In regards to Coxsackievirus B and Echovirus Infection, I assume there's no connection / causation with SIBO?

There probably have not been any studies to see if chronic enterovirus infection of digestive tract might be a causal factor in SIBO. Not many researchers are even aware of the non-cytolytic form of enterovirus, which can create chronic infections in the gut.

 

[Dakota15]

@Markus83 - In regards to the IFT IgG testing and IgG Western Blot that you mentioned, can I ask how you streamlined this? Are there only certain labs that will administer in this format? Did you go through your primary care physician or seek a CFS/ME Specialist?

Thanks for any help.

 

[Markus83]

The criteria for EBV, CMV and HHV6 you can find in a publication from Montoya et al.:https://onlinelibrary.wiley.com/doi/pdf/10.1002/jmv.23713

The thing with parvo I discovered by accident. I ordered an Elisa in the standard lab, and they did automatically the Western Blot because the Elisa got positive. In the blot they found the band NS1 and stated, that this might point to a chronic infection. I did some research on that and found a study with CFS patients, I mentioned it in another thread.

Quote from there: "In the meantime I found a study investigating Pervo serology in healthy indivuals (n = 200) and CFS patientes (n = 200). They found that 7 % of healty individuals have the NS1 band in IgG Western Blot, but more than 40 % of CFS patients: https://www.ncbi.nlm.nih.gov/pubmed/20007355

 

[Hip]

The criteria for EBV, CMV and HHV6 you can find in a publication from Montoya et al.:https://onlinelibrary.wiley.com/doi/pdf/10.1002/jmv.23713

Yes, Montoya's studies are the source I used for specifying the threshold titers for active infection in my roadmap document (and the easier-to-read mini roadmap).

But unfortunately I believe the EBV and HHV-6 tests Montoya used (which come from Focus Diagnostics, now owned by Quest Diagnostics) have changed the notation by which the test results are expressed.

The tests at Quest appear to have changed from the titer ratio notation (eg 1:10) to an index notation (eg 5.7). So unless I can get updated details from Montoya (whose office I emailed twice on this matter), the criteria in his studies are not that useful.

 

[Hip]

By the way, if anyone has direct contact details for Prof Montoya, please let me know. I only have the email of his assistant Amity, who unfortunately has not replied to my emails asking for Prof Montoya's current diagnostic criteria for herpesvirus infection in ME/CFS.

 

[Dakota15]

@Hip @Markus83 (or anyone else that can help interpret)

Do you have any interpretation of a DHEA-Sulfate test result of 123.2 (Low), against a standard range of 138.5 - 475.2 ug/dL?

I meant to send originally but forgot! Thanks for any help.