Studies find HHV-7 active in ME, yet ME Drs often don't test for it & Valcyte doesn't work for HHV-7

Hip

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Human herpes virus 7 (HHV-7) infection is rarely considered by ME/CFS patients or their doctors, yet active infection with this member of the herpesvirus family has been linked to ME/CFS in several studies.

Just like the other main viruses liked to ME/CFS (namely EBV, HHV-6, CMV, enteroviruses and parvovirus B19), studies have shown that ME/CFS patients more frequently have high titers to HHV-7 compared to healthy controls. These high titers suggest active infection, and thus implicate HHV-7 in the pathophysiology of ME/CFS.


For example, this study found that HHV-7 was active in 53% of ME/CFS patients, either as single infection, or in combination with other active viruses like HHV-6. Whereas only 11% of the health controls were found to have active HHV-7 (see Table 1).

What's more, dual active infections with both HHV-6 and HHV-7 were only detected in ME/CFS patients in that study; none of the healthy controls had dual active infections. This finding of dual active HHV-6 and HHV-7 only in ME/CFS patients but not in healthy controls was also observed in this study.

Yet to my knowledge, none of the ME/CFS specialist doctors regularly test for HHV-7 in their ME/CFS patients. Certainly there is very little discussion of HHV-7 on this forum. In the past, HHV-7 tests were not commercially available, possibly explaining why this virus has been ignored; but an IgG and IgM antibody test for HHV-7 is now available from Quest.



Furthermore, from some pharmacokinetic calculations I did, it appears that neither Valtrex nor Valcyte has any antiviral activity against HHV-7 in vivo. Famvir does not work for HHV-7 either.

This study says: "oral ganciclovir and treatment with IV ganciclovir had no effect on the prevalence of HHV-7 viremia ... these results indicate that HHV-7 is resistant to ganciclovir".

This study says: "ganciclovir is unlikely to be effective against HHV-7-related CNS disease, foscarnet may be useful but prospective trials are needed".

So if your ME/CFS doctor tests you for the usual ME/CFS viruses, and if your test results show, for example, an active infection with EBV, HHV-6 and/or CMV, the doctor may prescribe you Valtrex or Valcyte to treat these active viral infections.

Valtrex or Valcyte often lead to major improvements in ME/CFS patients who have one or more of these herpesviruses as active infections (after around 1 year or so of antiviral therapy). But other patients don't seem to benefit much.

The reason some patients don't benefit could be because they also have an active HHV-7 infection, which these two antivirals don't target. But your doctor will not know whether you have active HHV-7, because he will not have tested for it, and thus may never suspect HHV-7 as a reason why Valtrex or Valcyte were unable to improve your ME/CFS.

So an active HHV-7 infection could be a hidden factor behind the failure of some patients to properly respond to Valtrex or Valcyte, because even though these antiviral may bring other herpesviruses under control, they don't work for HHV-7, and so your HHV-7 infection may remain active, and continue to cause ME/CFS symptoms.



The good news though is that the intravenous antivirals cidofovir (Vistide) and foscarnet (Foscavir) are potent antivirals for HHV-7, especially foscarnet (at least that's what my pharmacokinetic calculations showed, assuming these calculations are correct — I will be posting these calculations on the forum soon).

So if you did have an active HHV-7 infection, along with some other concurrent active herpesvirus infections, then cidofovir or foscarnet could target all your herpesviruses; these two antiviral are potent for EBV, HHV-6, cytomegalovirus, HSV-1, HSV-2 and HHV-7. Dr Daniel Peterson has experience using cidofovir for ME/CFS (some info here).



But I guess my question is: why are the ME/CFS specialist doctors often neglecting to test for HHV-7, when studies have implicated this virus in ME/CFS?
 
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BadBadBear

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Hip

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Per your calculations: Would Raltegravir also be an option with lower nephrotoxicity than Cidofovir?
Raltegravir has in vitro antiviral activity against cytomegalovirus (and it is assumed other herpesviruses), but my pharmacokinetic calculations showed that raltegravir has pretty much zero antiviral effect for CMV in vivo. I am guessing that it will also be a poor antiviral in vivo for the other herpesviruses (but I don't know for sure). Many compounds have good antiviral action in vitro, but turn out to be very poor antivirals in vivo.
 

Hip

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I've had copious amounts of testing done, but HHV-7 was not one of them!
Yes, I searched through these forums looking for patients who were tested for HHV-7, but there were very few:

One member here who was tested by a lab in the Ukraine and was found to have high titers to HHV-7. A member here tested for HHV-7 by Dr Kaufman. A person here who was tested for HHV-7 while under the care of Dr Daniel Peterson.

Someone here from Italy (@fablepd) tested positive for HHV-7 by PCR. He says that ME/CFS patients in Italy with positive HHV-7 who were given Valcyte saw no improvements — well my pharmacokinetic calculations explain why: because these calculations showed Valcyte does not work for HHV-7.
 
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Hip

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Thanks. Though given a choice of an HHV-7 antibody test and an HHV-7 PCR test, I would think (though am not entirely sure) that the antibody test is more likely to detect an active HHV-7 infection hidden in the tissues of ME/CFS patients than a PCR test. And the level of antibody titers may give a quantitative indication of the degree of infection.

PCR blood tests often come out negative in ME/CFS, as the virus may be in the tissues rather then the blood. Whereas antibody tests measure the immune response to the infection (rather than detect the infection itself), so even if the infection is hidden in the tissues, you can still often detect it by the raised antibody levels.

One study that looked for HHV-7 in ME/CFS patients by PCR found there was no difference between ME/CFS patients and healthy controls in terms of positive results. Whereas the studies I mentioned above looked at antibody levels, and found lots more ME/CFS patients have high antibody levels compared to healthy controls.

However, if you get a positive result on a PCR test, it does indicate an active infection, so this result does tell you something. But if you get a negative result on PCR, that's not really telling you much, because in ME/CFS you cannot really use that to rule out an infection, as it may be that your infection is in the tissues and not the blood (eg, as an abortive infection that produces not viral particles, as per Dr Lerner's theory).
 
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junkcrap50

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From Quest's page on the lab test:
Human Herpesvirus 7 (HHV-7), a close relative of HHV-6, is found in >85% of the population, with transmission occurring in early childhood. Like HHV-6, HHV-7 is a cause of exanthum subitum (roseola infantum). Due to the ubiquitous nature of HHV-7 infection, >80% of individuals in the general population exhibit HHV-7 IgG titers ≥1:20; however, only 5% of these individuals exhibit titers >1:320. Thus, HHV-7 IgG titers >1:320 are suggestive of recent HHV-7 infection. Detection of HHV-7 specific IgM is also indicative of recent infection.
Just posting for FYI. According to them, HHV7 is commonly found in healthy individuals.
 

Hip

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According to them, HHV7 is commonly found in healthy individuals.
Most of the ME/CFS-associated viruses are also found in healthy individuals. For example, EBV is found in around 90% of adults, HHV-6 is found in nearly 100% of adults, cytomegalovirus in 58% of adults. But in healthy people these infections are usually as dormant (latent) infections, so their antibody titers will be low.

Whereas in ME/CFS, these same infections are often found as active infections, as indicated by high antibody titers.


But that's a useful bit of info you quoted from Quest, as it gives you an indication of the threshold titer for active infection, which I think would be an IgG titer of greater than 1:320.
 

Hip

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@Hip I don’t get how this all fits to the fact that Davis did not find infections
Whether you find evidence of infections or not in ME/CFS depends on the testing methods used, and what part of the body you test.

If you use antibody testing, you will often find high titers of IgG in ME/CFS patients.

Though most non-ME/CFS doctors tend to believe that these high antibody titers found in ME/CFS patients are just the result of a dysfunctional immune system, especially because PCR blood tests often find no evidence of viruses in the blood. So they believe that there is no ongoing infection, and the high titers are just red herrings.

However, the ME/CFS specialist doctors view these high titers as evidence of an ongoing infection in the tissues.

In the case of enterovirus-associated ME/CFS, you can actually detect these tissue infections by using PCR on tissue samples (rather than on the blood). All the early ME/CFS research in the UK dating back the 1970s used to take muscle tissue biopsies from ME/CFS patients, and test those tissue samples using PCR, and here the PCR comes back positive. In these tissue PCRs, the muscles of ME/CFS patients were found to be riddle with enterovirus infection.

But these muscle tissue enterovirus infections are non-cytolytic infection, which produce no new viral particles; and this is why you don't see viruses in the blood using PCR. (Similarly, the abortive herpesvirus infections in Dr Lerner's theory of ME/CFS produce no new viral particles, hence the negative PCR blood tests).

Historically, the reason this British research was discounted in the US was because in 1994 the CDC conducted an (unpublished) study on ME/CFS patients which used PCR blood tests, and unsurprisingly, it found no enterovirus. Whereas the researchers in the UK had been using PCR on muscle tissue, where they found ample evidence of chronic infections in ME/CFS patients. Dr Chia explains this in his Invest in ME 2009 Conference presentation (timecode 22:30), available on DVD.

That I believe is why in the US, interest switched to researching herpesviruses as the possible cause of ME/CFS. Which I guess is a good thing, because it seems that both enteroviruses and herpesviruses are linked to ME/CFS, and in the UK, the focus was solely on enterovirus; so it's good that the US went down the herpesvirus route.


Nowadays Dr John Chia is making it clear we should be testing the relevant tissues of ME/CFS patients when looking for chronic active infections, especially as these infections may not be producing any new viral particles. You cannot just test the blood using methods like PCR or the high throughput sequencing (that Prof Lipkin uses) and expect to find infections in the tissues; you may not find them using those methods.
 
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Sundancer

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reading this,

I do have herpes 6 (shingles), but for many years nothing has happened. But since I've crashed, the place where the infection was sometimes tingles and itches. When i've PEM, or when another virous hops along,
As if it will break out again, happily, until now it didn't.
I'm pretty sure I do have herpes 7 too. Because my baby had it when still on the breast.

There is no doctor in my country that tests for those things ( as far as I'm aware).
the only one I could go to is KDM, but I do not like the stories about him, plus I do not have money

besides, I do have sibo too, he prescribes AB, I will not take that.

I've taken AB twice in my life, both times I became bedbound.
I feel sort of stuck, maybe I'd better not read things like this...
Just go on with vitamins and B12 and hoping
 

frederic83

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Some years ago, I was looking for a HHV7 antibody test in Europe to detect an eventual tissue infection, I was not able to find one.
 

Hip

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Some years ago, I was looking for a HHV7 antibody test in Europe to detect an eventual tissue infection, I was not able to find one.
I read somewhere that there were some difficulties in developing blood tests for HHV-7, which may explain why it's hard to find a lab test for this virus. I could not find an HHV-7 test in the UK.

I could only find the Quest antibody test mentioned above. Mayo Clinic do an HHV-7 antibody test, but it looks like it's just the same Quest antibody test.