I have a chronic HHV7 infection detectable in the blood. I have measured it with real time PCR 8 times over the span of two years (in different labs) and the result is always the same: around 2000-3000 copies per ml (90 copies/ml is the threshold for positivity, below 90 it's considered not detectable). The virus is always present and replicating over the span of two years, and thus we cannot say it is reactivation.
One possibility was that i could have HHV7 genome integration. I sent my blood and hair samples to a HHV7 researcher to test this theory. HHV7 DNA was found in the blood but not in the hair samples, and thus it was concluded that it cannot be genome integration. The only possible scenario is a chronic infection.
From a clinical standpoint, it is tough to figure out if this virus is actually doing anything bad.
Two conditions are known to be caused by HHV7, one is a rash (which i don't have), the other is encephalitis, which does not resemble ME. It doesn't seem possible to figure out if it has any clinical relevance in someone with an ME like illness, at least not with tools that doctors have access to - though i have to say researchers i talked to didn't seem to have a clue either.
I have tried some antivirals but they were never effective on the viremia, some (inosine pranobex and artemisinin) actually increased the copies of HHV7 DNA in the blood, for some unknown reason.
It is worth noting that during treatment with high dose IVIG (2g/kg for 6 months) the viremia in the blood did not decrease. This seems strange to me because from my knowledge HHV7 is a common virus and thus the pooled IgGs from donors should have plenty of antibodies against it. But the amount of virus in the blood did not decrease at all? This maybe suggests that the virus is replicating somewhere antibodies cannot reach? Maybe @Jonathan Edwards or someone else can chime in.
The only antivirals that seem to be effective for HHV7 (they are still off-label though, at least in my country) are foscarnet and cidofovir, both have a pretty unfriendly side effects profile and require hospitalization to be administered. Is it really worth it for me to go doctor shopping until i find someone who is willing to try them? I have tried so many treatments over the years with never any success, i'm not really motivated to keep going. But at the same time i have extreme disability and nothing to lose.
Does anyone know of someone who has a chronic HHV7 infection and maybe tried these antivirals? Did the viremia actually decrease and did they feel any better?
One possibility was that i could have HHV7 genome integration. I sent my blood and hair samples to a HHV7 researcher to test this theory. HHV7 DNA was found in the blood but not in the hair samples, and thus it was concluded that it cannot be genome integration. The only possible scenario is a chronic infection.
From a clinical standpoint, it is tough to figure out if this virus is actually doing anything bad.
Two conditions are known to be caused by HHV7, one is a rash (which i don't have), the other is encephalitis, which does not resemble ME. It doesn't seem possible to figure out if it has any clinical relevance in someone with an ME like illness, at least not with tools that doctors have access to - though i have to say researchers i talked to didn't seem to have a clue either.
I have tried some antivirals but they were never effective on the viremia, some (inosine pranobex and artemisinin) actually increased the copies of HHV7 DNA in the blood, for some unknown reason.
It is worth noting that during treatment with high dose IVIG (2g/kg for 6 months) the viremia in the blood did not decrease. This seems strange to me because from my knowledge HHV7 is a common virus and thus the pooled IgGs from donors should have plenty of antibodies against it. But the amount of virus in the blood did not decrease at all? This maybe suggests that the virus is replicating somewhere antibodies cannot reach? Maybe @Jonathan Edwards or someone else can chime in.
The only antivirals that seem to be effective for HHV7 (they are still off-label though, at least in my country) are foscarnet and cidofovir, both have a pretty unfriendly side effects profile and require hospitalization to be administered. Is it really worth it for me to go doctor shopping until i find someone who is willing to try them? I have tried so many treatments over the years with never any success, i'm not really motivated to keep going. But at the same time i have extreme disability and nothing to lose.
Does anyone know of someone who has a chronic HHV7 infection and maybe tried these antivirals? Did the viremia actually decrease and did they feel any better?