Does a large number of people have 1:1280 HHV6 titers here ?

[SunMoonsStars]

Curious how many people have this titer level. Anyone ever had higher than 1:1280 ?

 

[Hip]

Dr Martin Lerner says that when tested using the LabCorp HHV-6 IgM test and the LabCorp HHV-6 IgG test, antibody titers of 1:160 or higher are indicative of an active HHV-6 infection. Refs: 1 2

Professor Jose Montoya says that in the Quest HHV-6 IgG IFA test, an IgG antibody titer of 1:320 or higher is indicative of an active HHV-6 infection. Ref: 1


Dr Lerner and Montoya treat ME/CFS patients with high HHV-6 with Valcyte. See their clinical trials of Valcyte for ME/CFS here.

 

[Dan_USAAZ]

Curious how many people have this titer level. Anyone ever had higher than 1:1280 ?

I have not seen/heard of an HHV-6 titer result higher than 1:1280. I have seen EBV titers listed as high as 1:2560.

My HHV-6 IgG antibody titer has been at 1:1280 since we started testing it about 6 years ago. The reference range is <=1:40. The only time my titer comes down is when I am on Valcyte and it goes to 1:320. When I go off Valcyte I feel worse and the titer goes back to 1:1280.

 

[SunMoonsStars]

I have not seen/heard of an HHV-6 titer result higher than 1:1280. I have seen EBV titers listed as high as 1:2560.

My HHV-6 IgG antibody titer has been at 1:1280 since we started testing it about 6 years ago. The reference range is <=1:40. The only time my titer comes down is when I am on Valcyte and it goes to 1:320. When I go off Valcyte I feel worse and the titer goes back to 1:1280.

Oh gosh. That’s discouraging to hear it goes back up !!
How long after stopping the Med do symptoms and titers return ?

Are you in Az ? If so may I ask who your doctor is ?

 

[SunMoonsStars]

Dr Martin Lerner says that when tested using the LabCorp HHV-6 IgM test and the LabCorp HHV-6 IgG test, antibody titers of 1:160 or higher are indicative of an active HHV-6 infection. Refs: 1 2

Professor Jose Montoya says that in the Quest HHV-6 IgG IFA test, an IgG antibody titer of 1:320 or higher is indicative of an active HHV-6 infection. Ref: 1


Dr Lerner and Montoya treat ME/CFS patients with high HHV-6 with Valcyte. See their clinical trials of Valcyte for ME/CFS here.

Thank you. I was curious what percent of us have results of as high as 1:1280.
I was wondering. You have been on boards a long time and have you seen a lot of people up that high or a few percent only ?

 

[Wonkmonk]

Dr Martin Lerner says that when tested using the LabCorp HHV-6 IgM test and the LabCorp HHV-6 IgG test, antibody titers of 1:160 or higher are indicative of an active HHV-6 infection. Refs: 1 2

Professor Jose Montoya says that in the Quest HHV-6 IgG IFA test, an IgG antibody titer of 1:320 or higher is indicative of an active HHV-6 infection. Ref: 1

This is of course correct, (and I'm a believer in these theories), but one should mention some investigators question if IgG supertiters are linked to active infection:

https://www.omf.ngo/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

"We have learned in our autism studies with Dr. Judy Van de Water that supertiters of antibodies do not mean new or reactivated viral replication. Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased. This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies."

If the above quote is right, I am wondering if supertiters should be a contraindication for Rituximab, since obviously the higher number of antibodies is supposed to compensate decreased T-cell and NK-cell activity.

 

[Hip]

one should mention some investigators question if IgG supertiters are linked to active infection

Yes, nobody knows for sure what the high antibodies titers to enteroviruses and/or herpesviruses found in ME/CFS really means. It could be due to some ongoing infection, or some researchers suggest it could be due to an immune system disfunction that creates high levels of antibodies even though there is no ongoing infection.


But we need to bear in mind that ME/CFS specialist doctors often get good results by treating ME/CFS patients with high antibody titers to enteroviruses or herpesviruses with antivirals and immunomodulators.

And when patients respond to antiviral or immunomodulatory treatment, and their ME/CFS improves, you find that the high enterovirus or herpesvirus titers go down. Likewise, if treatment is stopped and the patient gets worse, then concomitantly viral titers will go up. So in clinical practice, changes in titer levels correlate to the ME/CFS patient's changes in health level.

And that fact that titers go down as a result of various antivirals or immunomodulators suggests that the high titers are actually due to an ongoing infection, rather than just due to past infection or immune dysfunction. If the high titers were due to past infection or immune system disfunction, they would probably not be reduced by an antiviral.

 

[Wonkmonk]

I am wondering how after over 9 months of 6 grams of Valacyclovir a day, for 8 weeks including additional probenecid, my HSV-1 IgG titer can still be >20,000.

Valacyclovir is proven to be highly effective against HSV-1 and resistant HSV-1 is just 0.3% according to a study, so that's highly unlikely.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC145299/

 

[ljimbo423]

I am wondering how after over 9 months of 6 grams of Valacyclovir a day, for 8 weeks including additional probenecid, my HSV-1 IgG titer can still be >20,000.

Valacyclovir is proven to be highly effective against HSV-1 and resistant HSV-1 is just 0.3% according to a study, so that's highly unlikely.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC145299/

Hi Wonkmonk - My view is the same as Naviaux's. The anti-virals often are modulating the immune system in ways that improve symptoms but not buy inhibiting viral replication.

This Jose Montoya study also suggests immune modulation could be why the anti-viral helped CFS patients. Also that there was no difference in viral anti-body titers between the CFS group and the control group.

In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001).

Viral IgG antibody titers did not differ between arms. VGCV may have clinical benefit in a subset of CFS patients independent of placebo effect, possibly mediated by immunomodulation and/or antiviral effect.

https://www.ncbi.nlm.nih.gov/pubmed/23959519

EDIT- Robert Naviaux-

In most of the cases of ME/CFS that I have seen where IgG antibody titers have been measured before, during, and after antiviral therapy, the antibody titers remain high after treatment, even though the patient may report symptomatic improvement.

https://www.omf.ngo/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

Jim

 

[Dan_USAAZ]

Oh gosh. That’s discouraging to hear it goes back up !!
How long after stopping the Med do symptoms and titers return ?

Are you in Az ? If so may I ask who your doctor is ?

I started to feel worse in maybe 2 – 3 weeks after stopping Valcyte. I don’t have exact timelines for the labs in front of me, but it was maybe about 5 – 7 weeks after discontinuing Valcyte before I could get scheduled for the blood test. Titers were back up within that time frame.

 

[Learner1]

Hi Wonkmonk - My view is the same as Naviaux's. The anti-virals often are modulating the immune system in ways that improve symptoms but not buy inhibiting viral replication.

This Jose Montoya study also suggests immune modulation could be why the anti-viral helped CFS patients. Also that there was no difference in viral anti-body titers between the CFS group and the control group.


https://www.ncbi.nlm.nih.gov/pubmed/23959519

EDIT- Robert Naviaux-



https://www.omf.ngo/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

Jim

There are PCR (DNA) tests available for some viruses, which would confirm a virus that has suspiciously high IgGs.

Additionally, I've had numerous LabCorp HHV6 IgG tests. The numbers on my tests reported as high are 2.35 and higher, and are not reported as 1:160, etc. as Lerner reported.