Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

[kalles]

Hey Guys. Armin labs results are there. What you think? Frankfurt lab resulst coming in 1-2 weeks

 

[cfs since 1998]

Hey Guys. Armin labs results are there. What you think? Frankfurt lab resulst coming in 1-2 weeks

Hmmm.

You are another person with the unusual pattern of EBV VCA IgG+ and EBNA IgG-. Supposed to be rare pattern but seems more common in ME/CFS. I discuss it more here:
https://forums.phoenixrising.me/threads/years-and-years-feel-close-to-a-solution.92704/#post-2467995

Parvovirus B19 is also associated with ME/CFS though it's not talked about very much. I don't know much about it.

 

[kalles]

Hey guys, i completly forgot to post my Frankfurt Uniklinik lab Results. What you think?

 

[Hip]

Hey guys, i completly forgot to post my Frankfurt Uniklinik lab Results. What you think?

Do you know if these coxsackievirus B and echovirus antibody tests used the neutralisation method of antibody detection (rather than the ELISA, IFA or CFT methods). Neutralisation is the most sensitive method, and recommended by Dr John Chia.

Your coxsackievirus A9 is high. This virus is not normally considered as an ME/CFS virus, but in theory it could be contributing to ME/CFS symptoms, as it comes from the same enterovirus B species that coxsackievirus B and echovirus come from.


Do you have a web link for the lab which performed these test. I have not heard of the Frankfurt Uniklinik before.

 

[kalles]

Its the one that is recommend on the road map.

Do you know, what i can do against coxsackie A9?

 

[Hip]

Do you know, what i can do against coxsackie A9?

Dr Chia's usual treatments for such enterovirus infections are oxymatrine and tenofovir.

Kaloba (Pelargonium sidoides) cough medicine is actually antiviral for coxsackievirus A9 in vitro, so might be worth trying.

 

[EAOfficial]

Maybe where you are. Elsewhere, it has moved on. Quoting a doctor who died almost a decade ago is unfortunately not up to the minute information.

That may be. It's not true for herpes viruses. And, it may be worth repeating a test 2-3 months over a period of time for the DNA to be found in the blood. And once that happens, I've found that doctors will take notice and are open to prescribing treatment.

Well, there are hundreds of examples of doctors who don't know how to interpret antibody testing, and with no antibodies or IgG antibodies, they conclude that since the patient doesn't have IgM antibodies, they don't have the infection.

Er... There are actually very few quality ME/CFS clinics anywhere. And those that exist tend to treat patients as individuals, not widgets on a widget factory with standard procedures. I'm well aware of what my ME/CFS specialist and his partners have been doing for me as well as their other patients and it is indeed very unique to our health histories and symptoms.

And he did PCR testing on me when I'd had several doctors do only antibody testing and dismissed my infections when EBV and HHV6 were driving much of my illness.

However, I have been amazed in exchanging info with other patients, that, one after the other, after much encouragement and prodding, finally had positive testing for EBV, HHV6 and/or CMV after telling me for 2-3 years that they'd been tested adequately and their doctor said they didn't have it.

If patients have low immunoglobulins, an immune deficiency in B cell production of antibodies, they may not be making adequate antibodies to demonstrate that their immune system recognizes the virus and then a quantitative PCR test is a far more effective test.

Immunodeficiencies seem to be common enough in ME/CFS patients - not everyone, certainly, but I've seen enough of them over the years that it is well worth considering. And for those of us that have one either IV or subcutaneous gammaglobulins can be an important support for successfully battling infections.

Great advice. But most patients don't have enteroviruses. If they're suspected, definitely they should try the best test for them. Still, if patients don't make antibodies, the neutralization test may not work. Perhaps a biopsy might?

In the US, both Quest Diagnostics and LabCorp, the 2 biggest labs, use IFA for antibodies. Mine were negative. But, on 5 occasions over 8 years, I've had positive quantitative PCR tests from both labs.


Dr Lerner is dead, and the info is out of date. The study you referenced does not say what you said. It says this:

"EBV reactivation is most commonly identified in clinical practice using serological testing for the presence of EBV early antigen-diffuse (EA-D) IgG or EBV viral capsid antigen (VCA) IgM [11,12,13]. EBV VCA IgM is usually only detectable during the acute early stage of primary or reactivated EBV infection. In contrast, EBV EA-D is more likely to be detected only during the later chronic stage of EBV infection [14]. Therefore, multiple testing methods are required to accurately detect EBV reactivation"

It is tricky to catch herpes viruses in folks with compromised immune systems. Testing both PCR and antibodies might be prudent, 2-3 times over 6 months if in doubt.

Treatment helps.

What doctor or clinic is willing to do this testing?

 

[Learner1]

There are many. It doesn't really take a special doctor or clinic, just a doctor who is interested in helping you, and who has been armed with scientific information and a healthy suspicion to justify ordering tests. These are just a few of many medical papers implicating EBV, HHV6, and other viruses in ME/CFS.

https://onlinelibrary.wiley.com/doi/full/10.1002/jmv.25744

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1644-y

https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2023.1266738/full

https://pmc.ncbi.nlm.nih.gov/articles/PMC8634673/