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

[kalles]

The tests that ME/CFS doctors use for these pathogens are detailed in this MEpedia article.

Thank you very much! I am familiar with your ME/CFS roadmap. Are there individuals who have had positive experiences with the tests from the Frankfurt University Hospital? And what about the medications Rega Compound A and Rega Compound 17? Have there been any successes with them?

 

[Hip]

Are there individuals who have had positive experiences with the tests from the Frankfurt University Hospital?

Yes, it is possible to be tested there. You fill out their form, and send you serum.

And what about the medications Rega Compound A and Rega Compound 17? Have there been any successes with them?

Unfortunately these compounds have not been marketed by the drug company, and no information about when they might be brought to market. For enterovirus, Dr Chia's treatments remain oxymatrine, Epivir and tenofovir.

 

[cfs since 1998]

What do you think are the pathogens that pose the greatest problem based on my previous lab results? And which medications should I use to treat these pathogens? For the Epstein-Barr virus (EBV), medications such as Valcyte and Tenofovir would be appropriate, while Aciclovir or Valaciclovir could be considered for the treatment of other pathogens Like HSV ,correct? Or anything Else, i forgot?

Thank you!

Lab testing for viruses is almost worthless. It's good to know what viruses you do or don't have but other than that I wouldn't put too much stock in them. Viruses such as EBV can cause illness even when latent due to changing the behavior of the immune system and/or autoimmunity. Additionally ME/CFS often have immune exhaustion and antibody production may not correlate to the severity of infection as it would in healthy people.

 

[heapsreal]

That means famvir and Valcyte was the Game changer for you? What for viruses did you have?

Ebv, cmv, chickenpox/shingles.

 

[Learner1]

What do you think are the pathogens that pose the greatest problem based on my previous lab results?

Epstein Barr, possibly VZV, HSV1 and 2.

And which medications should I use to treat these pathogens? For the Epstein-Barr virus (EBV), medications such as Valcyte and Tenofovir would be appropriate, while Aciclovir or Valaciclovir could be considered for the treatment of other pathogens Like HSV ,correct?

Yes.

The tests that ME/CFS doctors use for these pathogens are detailed in this MEpedia article.

Dr Lerner, referenced in that article, did some great work, but he died 9 years ago.

Medical science has moved on, especially in a post-COVID era

And for many of us who may not be making antibodies properly, antibody testing can find nothing, while a PCR test will find the DNA of the virus, if it's in the bloodstream. And, many, many patients on this forum have had high IgG antibody results dismissed by doctors as a past infection, and they don't get treatment, making antibody testing for them.

Additionally, testing at different times can have different results as these viruses can hide out in organs and not be putting things into the bloodstream, so doing a couple of tests, a couple of months apart may find something in the bloodstream when one set of tests won't.

 

[kalles]

Lab testing for viruses is almost worthless. It's good to know what viruses you do or don't have but other than that I wouldn't put too much stock in them. Viruses such as EBV can cause illness even when latent due to changing the behavior of the immune system and/or autoimmunity. Additionally ME/CFS often have immune exhaustion and antibody production may not correlate to the severity of infection as it would in healthy people.

That means you would focus more on your symptoms rather than solely relying on lab diagnoses, and instead, you would try the appropriate medications? I have similar thoughts, which is why I listed my symptoms in the previous post. However, I'm unsure which virus might be contributing most to my complaints. Maybe you can Help me to find this out

 

[kalles]

Epstein Barr, possibly VZV, HSV1 and 2.

I am currently taking acyclovir and took valacyclovir. I was under the impression that I had overcome Epstein-Barr virus (EBV) and Lyme disease, as I underwent supportive oligonucleotide therapy (SOT) about four or five years ago. I believed this therapy to be the best option, but perhaps I was mistaken.

 

[kalles]

while a PCR test will find the DNA of the virus, if it's in the bloodstream

Which laboratories would you recommend for conducting PCR tests for various viruses?

 

[Hip]

Dr Lerner, referenced in that article, did some great work, but he died 9 years ago.

Medical science has moved on, especially in a post-COVID era

No, medical science remains the same in this area.

If you check the viral tests used by any ME/CFS specialist doctor today, they use antibody tests, not blood PCR. For example, Dr John Chia uses antibody tests for checking if patients have active viral infections.

The only time Dr Chia uses PCR is when he tests stomach tissue biopsies for enterovirus. In this case, PCR may come back positive, because enterovirus lives in these stomach tissues. But there is very little enterovirus living in the blood of ME/CFS patients, so blood PCR tests will usually be negative.

That's why blood PCR tests are usually a waste of money in ME/CFS, and even worse, if ME/CFS patients are not educated about viral testing, they may think that their negative blood PCR means they do not have an active infection, which may be a false conclusion. So taking blood PCR tests can mislead.

ME/CFS patients might consider blood PCR if nothing has been found by antibody testing; but the first port of call is antibody testing. This is current practise in any ME/CFS clinic.

And for many of us who may not be making antibodies properly, antibody testing can find nothing, while a PCR test will find the DNA of the virus, if it's in the bloodstream.

Many? I think there will be a vanishingly small number of ME/CFS patients who do not have antibodies to one or more enterovirus or herpesvirus.

I've never come across an ME/CFS patient who used the proper antibody tests for enterovirus and herpesvirus, and did not have persistently high antibody levels to at least one of these viruses.

But you have to use the right antibody tests. For enterovirus, Dr Chia recommends using a neutralisation antibody test. For HHV-6, the HHV-6 Foundation recommend using an IFA antibody test.

And for EBV, both Dr Lerner and this study published in 2021 says you need to test Epstein-Barr virus VCA IgM and EA IgG diffuse antibodies if you want to test for a persistent infection. Many patients get the wrong EBV antibody tests.

 

[cfs since 1998]

That means you would focus more on your symptoms rather than solely relying on lab diagnoses, and instead, you would try the appropriate medications? I have similar thoughts, which is why I listed my symptoms in the previous post. However, I'm unsure which virus might be contributing most to my complaints. Maybe you can Help me to find this out

Let me try to clarify what I meant. High virus antibody titers should obviously raise suspicion. However, normal or low titers are inconclusive at best or misleading at worst.

 

[kalles]

Let me try to clarify what I meant. High virus antibody titers should obviously raise suspicion. However, normal or low titers are inconclusive at best or misleading at worst.

OK thank you. I will now have the test for Coxsackie and Echoviruses conducted at the laboratory in Frankfurt. Maybe new Test for herpes viruses, too.

 

[Learner1]

No, medical science remains the same in this area

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.

But there is very little enterovirus living in the blood of ME/CFS patients, so blood PCR tests will usually be negative.

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.

That's why blood PCR tests are usually a waste of money in ME/CFS, and even worse, if ME/CFS patients are not educated about viral testing, they may think that their negative blood PCR means they do not have an active infection, which may be a false conclusion. So taking blood PCR tests can mislead.

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.

ME/CFS patients might consider blood PCR if nothing has been found by antibody testing; but the first port of call is antibody testing. This is current practise in any ME/CFS clinic.

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.

Many? I think there will be a vanishingly small number of ME/CFS patients who do not have antibodies to one or more enterovirus or herpesvirus.

I've never come across an ME/CFS patient who used the proper antibody tests for enterovirus and herpesvirus, and did not have persistently high antibody levels to at least one of these viruses.

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.

But you have to use the right antibody tests. For enterovirus, Dr Chia recommends using a neutralisation antibody test. For HHV-6, the HHV-6 Foundation recommend using an IFA antibody test

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.

And for EBV, both Dr Lerner and this study published in 2021 says you need to test Epstein-Barr virus VCA IgM and EA IgG diffuse antibodies if you want to test for a persistent infection. Many patients get the wrong EBV antibody tests.

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.

 

[Hip]

Elsewhere, it has moved on.

I would like to see references for this statement. Can you provide documentation for your assertion that ME/CFS doctors are now using blood PCR tests rather than antibody tests?

In Daniel Peterson's ME/CFS Treatment Guidelines dated 2011, he stated he uses both antibody testing and PCR for herpesvirus infections, but only antibody testing for enterovirus.

In Dr Lerner's Treatment Guidelines, he only uses antibody testing for herpesvirus, and does not test for enterovirus at all.

But most patients don't have enteroviruses.

Dr Chia's studies would seem to contradict that statement. In Dr Chia's study, he found enterovirus VP1 protein in 82% of stomach tissue samples from ME/CFS patients, compared to 20% in healthy controls.


It is fair to say that most ME/CFS patients do not properly test for enteroviruses, so don't know if they have enterovirus infections or not.

This is because the US has been rather backwards regarding enterovirus ME/CFS research. For decades, the US ignored the enterovirus investigations British ME/CFS researchers were conducting from the 1970s onwards.

It was only when Dr John Chia took an interest in this research that the US became aware of enterovirus ME/CFS. But even today, most ME/CFS doctors do not know how to properly test for enterovirus. So there is still widespread ignorance regarding enterovirus.

For enterovirus testing, Dr Chia found you may only get positive antibody test results if you use the "gold standard" neutralisation method of antibody detection (the full name is the plaque reduction neutralisation test, or PRNT).

If you use less sensitive antibody detection methods like ELISA or IFA, then these may miss a chronic enterovirus infection. And complement fixation testing (CFT) is the least sensitive method, which is more or less useless for detecting persistent enterovirus infections.

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.

If you perform enough blood PCR tests on enterovirus ME/CFS patients, you may eventually get a test which is positive. For mild to moderate ME/CFS patients, Dr Chia's research on enterovirus blood PCR testing indicates that patients mostly test negative, but every now and then, they may get a positive PCR result.

So if you have patience, and you don't mind doing a lot of blood tests, you may find a positive blood PCR result, if that's what interests you.

For the severe bedbound patients, Dr Chia found their blood PCR tests are more often positive than negative. So there is a bit more virus in the blood in severe patients.

But generally, enterovirus lives in the muscles, intestines and brain in ME/CFS patients, with very little in the blood.

Dr Lerner is dead, and the info is out of date.

Can you provide a scientific or medical reference to support your assertion that the info is out of date?

The 2021 study I mentioned indicates the info remains current. The study says you need to test for both Epstein-Barr virus VCA IgM as well as EA IgG diffuse if you want to detect chronic EBV infections. This is precisely what Dr Lerner would test for.

Nothing has changed, and Dr Lerner's methods are still the methods used today.



You may also be interested to know that Dr Lerner's theory that ME/CFS is caused by abortive herpesvirus infections (rather than the normal productive herpesvirus infections) is currently being researched by a group in Ohio State University. So his theories on abortive infections are still current also.

If you don't know what an abortive infection is, this post explains it.

 

[Learner1]

@Hip

I do not pretend to be an enterovirus expert. Dr Chia seems to be a fine expert. But, many patients have herpes viruses, which current long COVID research is also finding.

As for doctors documenting their clinical practice, most don't. This is why the few that we have on this subject are all we have and are dated - 10-20 year old information does not reflect state-of-the-art clinical practice.

In good faith, I've personally shared with you my lab results supporting my statements regarding PCR and antibody testing that go against your repetition of dated information and you choose to ignore these facts and go on repeating out of date info

None of the information you've quoted above is new. It's been amply discussed before. I don't appreciate your attack on my knowledge.

 

[kalles]

@Hip @Learner1 I plan to have viruses tested at the laboratory in Frankfurt to get an up-to-date overview of the pathogens in my system. The lab offers both antibody tests and PCR tests. Since I am privately insured, I have the option to use both testing methods for the same pathogen. This could also be of interest for our discussion to determine whether PCR or antibody tests are more effective – that way, we would have a direct comparison. However, I cannot say with certainty whether the pathogens are actually the cause of my CFS or if positive results will come back. Which method would you recommend for which pathogens, and which specific pathogens should I definitely test for? I will attach photos of the respective request forms. I would say: PCR and Antibodytest for EBV, Enterovirus, HHV, HSV, parvovirus b19, CMV, VZV and Retrovirus? Are there possibly other viruses that could be causes of CFS that I haven't listed?

 

[Hip]

As for doctors documenting their clinical practice, most don't. This is why the few that we have on this subject are all we have and are dated - 10-20 year old information does not reflect state-of-the-art clinical practice.

In good faith, I've personally shared with you my lab results supporting my statements regarding PCR and antibody testing that go against your repetition of dated information and you choose to ignore these facts and go on repeating out of date info

There are around two dozen well-known ME/CFS doctors in the US. How did you find out what they are all currently doing regarding viral testing?

Your doctor gave you a PCR test which detected an infection; but from that, you cannot conclude that all the top ME/CFS specialists have ditched antibody testing and switched to PCR.



I agree that we don't have much information regarding what the top ME/CFS doctors are currently doing. We get second hand reports from ME/CFS patients who are treated by these doctors.

In recent years, I have seen a few lab reports from ME/CFS patients tested by these top doctors, doctors such as Dr John Chia, Dr Kenny De Meirleir, the Stanford ME/CFS Initiative clinic, and Gordon Medical. None of them are using PCR; they use antibody testing in the lab tests I have seen. And when I had some email exchange with Dr Dantini, who focuses on herpesvirus ME/CFS, he said "I don’t think PCRs are useful in this disease".

If you go to the Enterovirus Foundation website run by Dr Chia, and read the section on testing for chronic enterovirus, regarding PCR it says:

Reverse transcription-Polymerase Chain Reaction (RT-PCR) - The PCR test is not considered sensitive for chronic enterovirus infections.

Since viruses are cleared quickly from the blood stream, the chance of finding viral gene or RNA in the blood by the PCR technique is low. With special techniques and repeated testing, enterovirus RNA can be found in close to thirty percent of whole blood samples taken from chronically infected EV patients.

Now of course herpesviruses are different to enteroviruses, and PCR might be appropriate for herpesviruses. Dr Daniel Peterson says in his treatment guidelines pdf that he uses PCR and serology.



I would love to get more information on how ME/CFS doctors are currently doing viral testing. Any info you can offer would be gratefully received. But let's not assume that antibody testing is passé.

If we wanted to be thorough, we could ask ME/CFS patients on all the ME/CFS forums and FB groups what viral tests their ME/CFS specialist doctor gave them. Then we would see what current clinical practice is.


In reality, treating ME/CFS with antivirals has only had limited success. I heard that Stanford stopped using Valcyte to treat herpesvirus ME/CFS, because the success rate was too low. And Dr Chia's options for treating enterovirus ME/CFS are limited also: he only has oxymatrine, Epivir and tenofovir, which only work for a small subset of enterovirus patients.

 

[Hip]

Are there possibly other viruses that could be causes of CFS that I haven't listed?

The pathogens usually linked to ME/CFS are:

• Enteroviruses — coxsackievirus B and echovirus
• Herpesviruses — Epstein-Barr virus, HHV-6, cytomegalovirus, and varicella zoster virus
• Parvovirus B19
• SARS-CoV-2 coronavirus
• Chlamydia pneumoniae

For VZV, this is not tested for by blood tests, but is detected by visual inspection of the body for shingles blisters. More info in this thread.

 

[Treeman]

For VZV, this is not tested for by blood tests, but is detected by visual inspection of the body for shingles blisters. More info in this thread.

I’ve recently being having many conversations about this with various consultants in the nhs and they told me it’s not tested by visual inspection but by taking a swab of a burst blister and testing it for vzv.

 

[Hip]

I’ve recently being having many conversations about this with various consultants in the nhs and they told me it’s not tested by visual inspection but by taking a swab of a burst blister and testing it for vzv.

If I remember correctly, I believe it says on the CDC website that if you want to double check that the blisters are VZV blisters, then swabbing a burst blister is the way to do it.

I think Dr Chia checks his patients' bodies for shingles blisters, which may indicate they have VZV ME/CFS. I am not sure if he also double checks using a swab of the blister.

In one of his video interviews (timecode 6:58), Dr Chia describes one bedbound patient who had just two tiny shingles blisters on her body, but that was enough to raise suspicion of VZV ME/CFS. He gave her some acyclovir, and within a few weeks she was back to work! So it seems that VZV ME/CFS can be highly treatable, unlike most other forms of ME/CFS.

 

[Treeman]

If I remember correctly, I believe it says on the CDC website that if you want to double check that the blisters are VZV blisters, then swabbing a burst blister is the way to do it.

I think Dr Chia checks his patients' bodies for shingles blisters, which may indicate they have VZV ME/CFS. I am not sure if he also double checks using a swab of the blister.

In one of his video interviews (timecode 6:58), Dr Chia describes one bedbound patient who had just two tiny shingles blisters on her body, but that was enough to raise suspicion of VZV ME/CFS. He gave her some acyclovir, and within a few weeks she was back to work! So it seems that VZV ME/CFS can be highly treatable, unlike most other forms of ME/CFS.

It seems to me that in the uk primary care will identify vzv by visual means, but consultant specialists in hospitals including infectious diseases, dermatology and immunology want a swab confirmation.