Valcyte: have there been trials in ME/CFS?

[Sasha]

I think that Dr Montoya has done some but I'm a bit confused about what's published.

Can anybody point me at any papers or accounts of trials on Valcyte, either by Dr Montoya or by others?

 

[Sasha]

Bump...

 

[SOC]

If you're trying to convince NHS docs to prescribe Valcyte, I would drop the ME/CFS angle. There's not much published in the way of trials for anything for ME/CFS. You might try hitting the chronic HHV6 angle instead. There's a lot of info at the HHV6 Foundation
http://hhv-6foundation.org/

There's a Clinician's page that you can point the doctors to. It contains information about testing and treatment (including Valcyte). Good luck!

 

[Sasha]

Thanks, SOC - I've sort of bounced around that site rather unhappily because there seems to be so little that's ME/CFS-specific. That's a good approach you're suggesting.

 

[SOC]

That's a good approach you're suggesting.

That's how some people get Valcyte covered by insurance -- it's for HHV6, not ME/CFS. If I were in the UK, I'd leap on any symptom that could be isolated and insist on treatment for that, leaving the whole ME/CFS thing out of it. In fact, in your case, I might even demand that the ME/CFS diagnosis be removed from my record since you now have a known reason for your symptoms, so it can't be ME/CFS, right?

I'd also insist on some immune function tests since people with healthy immune systems don't have problems keeping HHV6 in latency.

If the NHS wants to balk at your tests from the private organization, insist that they do a better test (if they have one) based on this info about HHV6 testing:
http://hhv-6foundation.org/patients/hhv-6-testing-for-patients

Here's the link at HHV6 Foundation about CFS. It even includes some papers about Valcyte (valganciclovir) with ME/CFS. Nevertheless, I'd stick to focusing on the chronic HHV6 and playdown the ME/CFS angle with the NHS.

 

[Sasha]

That's how some people get Valcyte covered by insurance -- it's for HHV6, not ME/CFS. If I were in the UK, I'd leap on any symptom that could be isolated and insist on treatment for that, leaving the whole ME/CFS thing out of it. In fact, in your case, I might even demand that the ME/CFS diagnosis be removed from my record since you now have a known reason for your symptoms, so it can't be ME/CFS, right?

Hi SOC - I think our health systems work rather differently!

In the UK, my NHS GP must refer me to a specialist consultant and there's no way I'll be able to get him to cover up my ME diagnosis - and as far as I know, there's no way of removing that diagnosis from the last 27 years of my medical files.

I don't think it's widely accepted in the UK that HHV6 causes disease, so even if I rocked up with a test result that they were confident in, or they replicated it themselves, it wouldn't necessarily get me any treatment (this is what happened to ukxmrv on the other thread I've got going on this - they ignored her test results). I can't find any mention at all of HHV6 on our NHS central info website for patients (it gives info about pretty much every disease the NHS treats).

In the US, is it widely accepted that HHV6 causes disease?

I don't even know if my HHV6 titres have been chronically high - I've never had this test before and my GP didn't know how to obtain one.

I still like your line of going in and saying, 'look, forget the ME diagnosis, let's concentrate on this high titre and look at these papers where they treat people with a high titre.'

It's proving hard to even find a specialist who seems at all familiar with the idea that HHV6 might cause disease.

 

[SOC]

Sasha, those of you dealing with the UK NHS have my utmost sympathy.

It's established that HHV6 can cause serious illness, but the belief is that it can't be reactivated.......well, unless you have HIV or are taking immune suppressing meds. They tend to ignore the fact that by that logic, if you DO have a reactivated HHV6 infection, it must mean you have immune impairment. It sounds like you have that problem in spades. I'd be tempted to ask my doc what s/he would do if I had these HHV6 results and was HIV+, or had a bone marrow transplant. You can bet they'd jump on it then. They're assuming you have a healthy immune system which will take care of it -- which is what happens with most of the population.

As for ridding yourself of the diagnosis -- surely it has just been proved that your diagnosis was a misdiagnosis which should be corrected. ME/CFS patients don't have abnormal lab results, do they? Isn't that the whole argument of the BPS crew? I'd be yelling at them for misdiagnosing me all these years.

How high are your titres?

Do you have infectious disease specialists there? They would probably know about HHV6.

 

[Sasha]

Sasha, those of you dealing with the UK NHS have my utmost sympathy.

It's established that HHV6 can cause serious illness, but the belief is that it can't be reactivated.......well, unless you have HIV or are taking immune suppressing meds. They tend to ignore the fact that by that logic, if you DO have a reactivated HHV6 infection, it must mean you have immune impairment. It sounds like you have that problem in spades. I'd be tempted to ask my doc what s/he would do if I had these HHV6 results and was HIV+, or had a bone marrow transplant. You can bet they'd jump on it then. They're assuming you have a healthy immune system which will take care of it -- which is what happens with most of the population.

As for ridding yourself of the diagnosis -- surely it has just been proved that your diagnosis was a misdiagnosis which should be corrected. ME/CFS patients don't have abnormal lab results, do they? Isn't that the whole argument of the BPS crew? I'd be yelling at them for misdiagnosing me all these years.

How high are your titres?

I'm HHV6 AB IGG, IFA 1:1280
and HHV6 AB IGM, IFA <1:20

The reference ranges are given as <1:10 and <1:20, respectively.

I like that question you'd ask your doc! Maybe I should ask it of mine. But I can't understand why HHV6 isn't on the NHS site if it's recognised as an HIV issue. Strangely, Valcyte is on there in the context of CMV but it's as though HHV6 doesn't exist. I'm really confused.

 

[SOC]

I'm HHV6 AB IGG, IFA 1:1280
and HHV6 AB IGM, IFA <1:20

The reference ranges are given as <1:10 and <1:20, respectively.

I like that question you'd ask your doc! Maybe I should ask it of mine. But I can't understand why HHV6 isn't on the NHS site if it's recognised as an HIV issue. Strangely, Valcyte is on there in the context of CMV but it's as though HHV6 doesn't exist. I'm really confused.

That's high, indeed. What may give you trouble (as it does for most of us) is that your IgM is low. Ill-informed docs (most of them) will say that means you don't have an active infection. That's generally true for those with healthy immune systems, but not absolutely true of the entire population. A high IgG along with appropriate symptoms is suggestive of a chronic (not acute) infection.

The following is from the HHV6 Foundation website. Note that the reference rage related to these results is unclear but likely to be <1:80 or <1:320, so relatively speaking, your IgG is much higher than those mentioned here.
[my bolding]

Elevated IgG antibody levels. Elevated IgG antibody levels can suggest, but not prove active, chronic infection. In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture. (Wagner, Journal of Chronic Fatigue Syndrome)Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself. In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms. Elevated IgG Antibodies to HHV-6 cannot indicate with certainty that the infection is active, but high titers support a clinical diagnosis.

It is odd, since HHV6 is a well-known HIV and transplant issue, that there is nothing available at the NHS site. The problems with HHV6 infections are clear, as anyone can see from the papers listed at the HHV6 Foundation website.

An infectious disease doc is most likely (although far from certain) to understand the subtleties of herpesvirus testing.

Crazy, innit?

 

[Sasha]

Thanks, SOC - this is extremely helpful and I've very grateful indeed to you for taking the time to tell me about this stuff!

I'm going to be spending the next few days doing some heavy-duty mugging up. The issue is going to be that whoever I might end up seeing probably won't have done the same and they're the ones with the power!

 

[SOC]

Thanks, SOC - this is extremely helpful and I've very grateful indeed to you for taking the time to tell me about this stuff!

I'm going to be spending the next few days doing some heavy-duty mugging up. The issue is going to be that whoever I might end up seeing probably won't have done the same and they're the ones with the power!

I know. It's crazy-making, isn't it? You're better educated on the topic than the person being paid to help you, yet they can still destroy any chance you have of getting appropriate treatment.

Mugg up well and take all your lucky charms with you -- you'll need them.