Foscarnet Protocol for HHV6?

[Dan_USAAZ]

Does anyone know of a Foscarnet protocol for use with chronically activated HHV6? I have found published protocols for CMV or HHV6 with HIV, but not specific to just HHV6.

I understand that Daniel Peterson has used Foscarnet for CFS/HHV6, but I could not find any details on his protocol.
If anyone could point me to protocols that specialists have used or protocols that were used in research or any other ideas, I would appreciate it.

Thanks,
Dan

 

[Hip]

Daniel Peterson's ME/CFS diagnosis and treatment pdf can be found here, but it does not say much about the antiviral dosing protocol. He uses cidofovir, foscarnet and Valcyte as antivirals. Also valacyclovir, but this does not work for HHV-6 and cytomegalovirus.

Dr Lerner and Prof Montoya also use Valcyte, and their protocols are detailed in this post.

 

[Dan_USAAZ]

Hi @Hip,
I was hoping you would contribute. Thx! Yes, I have found some of Peterson's online information, but as you point out, not much in terms of dosing. I am going to see if my doc can get a consult with him.

The online dosing info I have found looks to be a 90mg/kg slow infusion( 1 - 2 hrs) bid for 2 to 3 weeks.

I have been on Valcyte for 6 years. Using the 4x titer threshold that you have mentioned in other threads, without Valcyte my HHV6 titer is 32x the high end of the reference range. On Valcyte, it drops to 8x. I get some improvement on Valcyte, mostly cognitive, but it is by no means a cure. I call it improvement, but actually I think it is just slowing the decline.

When I go off Valcyte, the improvement is lost and the titer goes back up. Doctors are suggesting that HHV6 must be embedded in tissue where immune system may not work as well, possibly CNS. Also looking into lymph system/tonsils...

I have concerns about the long term effects of Valcyte. If anyone has any thoughts or information on that, please share. I am currently off Valcyte and head feels similar to when you have the flu. I was hoping to stay off until I started a new med like Foscarnet, but don’t think I will make it.

Thanks again,
Dan

 

[Hip]

I get some improvement on Valcyte, mostly cognitive, but it is by no means a cure. I call it improvement, but actually I think it is just slowing the decline.

Whether cidofovir or foscarnet are able to provide advantages over Valcyte, I am not sure.

Cidofovir and foscarnet I believe work for HHV-7, whereas Valcyte does not, so that's one possible advantage, for patients with HHV-7 as well as HHV-6.

Not sure if you have any other herpesviruses, but a new potent drug called letermovir is now available for cytomegalovirus.

Have you also checked for enterovirus, using the ARUP Lab tests that Dr Chia recommends?

 

[Hip]

I get some improvement on Valcyte, mostly cognitive, but it is by no means a cure.

If you look at some the Valcyte success stories in this post, you see that several people moved up at least one level on the ME/CFS scale of: very severe, severe, moderate, mild, remission.

How would you rate your improvement on that scale?


Have you looked at other means to improve cognition, such as the supplement piracetam, or B12 oils?

 

[Dan_USAAZ]

Whether cidofovir or foscarnet are able to provide advantages over Valcyte, I am not sure.

According to the HHV-6 Foundation, Valcyte has just moderate effectiveness against HHV-6 while cidofovir and foscarnet are listed as having good & excellent activity (in vitro). Foscarnet can cross the blood brain barrier while cidofovir may not.

https://hhv-6foundation.org/clinicians/hhv-6-treatment

Cidofovir and foscarnet I believe work for HHV-7, whereas Valcyte does not, so that's one possible advantage, for patients with HHV-7 as well as HHV-6.

I have had HHV-7, but the titer is not elevated above the reference range. I assume HHV-7 is not an issue for me.

Not sure if you have any other herpesviruses, but a new potent drug called letermovir is now available for cytomegalovirus.

I certainly have other herpes viruses, but assume you are referring to active versus latent. I am still waiting for the EBV serology report to come in. I hope to have that in the next week or two.
I don't believe I have ever been tested for cytomegalovirus, so may need to look into testing.

Have you also checked for enterovirus, using the ARUP Lab tests that Dr Chia recommends?

I have not checked into enterovirus, but would like to. Does that test require the stomach biopsy?

 

[Dan_USAAZ]

If you look at some the Valcyte success stories in this post, you see that several people moved up at least one level on the ME/CFS scale of: very severe, severe, moderate, mild, remission.

How would you rate your improvement on that scale?


Have you looked at other means to improve cognition, such as the supplement piracetam, or B12 oils?

I take 900mg Valcyte per day and estimate that it moves me up about half a level. So maybe the middle of severe to the top of severe or bottom of moderate.

I have tried several other supplements to try improve cognition, including three or four different nootropics. I did not notice a benefit.
I am currently using a B12 oil that I ordered form an Australian company. I believe that may have come from a thread/recommendation that you authored. I am using the oil every other day and may be getting a small benefit.

 

[Hip]

According to the HHV-6 Foundation, Valcyte has just moderate effectiveness against HHV-6 while cidofovir and foscarnet are listed as having good & excellent activity (in vitro). Foscarnet can cross the blood brain barrier while cidofovir may not.

Ah right, well then that is certainly an advantage. Although with foscarnet requiring daily IV administration to get the max antiviral effect, presumably it's probably not something you could do easily on a long term basis.

But perhaps a short course of foscarnet would be enough to knock HHV-6 right back, so that afterwards you could just keep it in check with Valcyte.

I have not checked into enterovirus, but would like to. Does that test require the stomach biopsy?

You can test for enterovirus by a regular blood serum sample sent to ARUP Lab, to be tested with their coxsackievirus B and echovirus antibody tests. Dr Chia's research indicates that antibody titers of 1:160 or higher on the ARUP tests suggest active enterovirus infection.

You have to triple check that LabCorp/Quest send your blood samples to ARUP though, because they often screw up and perform the test internally using their much less sensitive test. This thread details people's frustrations and suggestions with trying to get LabCorp/Quest send your blood samples to ARUP!

You can also test for enterovirus by stomach biopsy, sending the biopsy tissue to Chia's lab for testing.

 

[Togma]

Ah right, well then that is certainly an advantage. Although with foscarnet requiring daily IV administration to get the max antiviral effect, presumably it's probably not something you could do easily on a long term basis.

But perhaps a short course of foscarnet would be enough to knock HHV-6 right back, so that afterwards you could just keep it in check with Valcyte.





You can test for enterovirus by a regular blood serum sample sent to ARUP Lab, to be tested with their coxsackievirus B and echovirus antibody tests. Dr Chia's research indicates that antibody titers of 1:160 or higher on the ARUP tests suggest active enterovirus infection.

You have to triple check that LabCorp/Quest send your blood samples to ARUP though, because they often screw up and perform the test internally using their much less sensitive test. This thread details people's frustrations and suggestions with trying to get LabCorp/Quest send your blood samples to ARUP!

You can also test for enterovirus by stomach biopsy, sending the biopsy tissue to Chia's lab for testing.

Hip. where can I get accurate testing for pathogens such as cvb4 in the uk? Thankyou

 

[Hip]

Hip. where can I get accurate testing for pathogens such as cvb4 in the uk? Thankyou

Unfortunately it's not possible in the UK. It's only antibody tests using the neutralization method (such as the coxsackievirus B and echovirus tests provided by ARUP Lab in the US) which are sensitive enough to detect these chronic low-level enterovirus infections found in ME/CFS. You can send your blood serum samples by courier to ARUP, but ARUP is very expensive.

There is also a lab in Greece with offers this neutralization method much more cheaply. See the CVB section of this document.

 

[Togma]

Unfortunately it's not possible in the UK. It's only antibody tests using the neutralization method (such as the coxsackievirus B and echovirus tests provided by ARUP Lab in the US) which are sensitive enough to detect these chronic low-level enterovirus infections found in ME/CFS. You can send your blood serum samples by courier to ARUP, but ARUP is very expensive.

There is also a lab in Greece with offers this neutralization method much more cheaply. See the CVB section of this document.

Excellent, thank you Hip. I noticed you said somewhere that your titers for cvb4 were up when you were tested... did you find any treatment? Is there a treatment for cvb4? Also, where did you find out that cvb4 causes skin wrinkling?

Many thanks

 

[Hip]

Is there a treatment for cvb4?

At the moment only really oxymatrine, though new drugs are in the pipeline, see the roadmap for more info.

Also, where did you find out that cvb4 causes skin wrinkling?

I didn't. The virus I caught I observed caused fine skin wrinkling in everyone over 30 who caught it. See my website: https://chronicsorethroat.wordpress.com for pictures of this wrinkling. I had blood tests for all the usually viruses linked to ME/CFS, and had very high antibody titers to CVB4, suggesting that CVB4 is the virus I caught (but I cannot be 100% certain).

So the evidence I have suggests there may be a nasty strain of CVB4 going around which causes this wrinking symptoms, plus many other nasty symptoms.

But this discussion of CVB4 should be on its own thread, as we are taking this thread off track.

 

[Togma]

Thanks alot hip, sorry to take the thread off topic. all the info I have read about coxsackie gives the impression that its self limiting or goes dormant and non contagious after the initial infection. We should talk again sometime.

 

[Hip]

@Togma there are plenty of threads on coxsackievirus / enterovirus on the forum, you might like to read and post on those.

 

[Togma]

will do. I'll have a read through. thanks

 

[Nuno]

@Dan_USAAZ have you ever found out the Foscarnet dosage? I am really curious why Foscarnet hasn’t even been properly trialed for MECFS

 

[Dan_USAAZ]

@Dan_USAAZ have you ever found out the Foscarnet dosage? I am really curious why Foscarnet hasn’t even been properly trialed for MECFS

Hi @Nuno!
I have not made any progress on the Foscarnet treatment. In my previous post I had cited a generic dosing regimen that I picked up from Googling Foscarnet dosing. That dose appears to still be valid, but there are other dosing protocols listed for the specific illness they are trying to address. I have seen published reports with dosing for specific viruses as well as for general infection.

I don't know why it has not been moved forward as a treatment candidate, especially for patients that appear to have chronically reactivating viruses. Possibly the high cost of medication and infusions as well as the complexity of administration.

 

[Dan_USAAZ]

@Dan_USAAZ have you ever found out the Foscarnet dosage? I am really curious why Foscarnet hasn’t even been properly trialed for MECFS

Japan appears to be ahead of other countries in the use/approval of Foscarnet for HHV6.

Foscarnet approved for HHV-6 encephalitis in Japan

Much of the HHV6 doing information appears to be related to transplant patients.

 

[Nuno]

Hi @Nuno!
I have not made any progress on the Foscarnet treatment. In my previous post I had cited a generic dosing regimen that I picked up from Googling Foscarnet dosing. That dose appears to still be valid, but there are other dosing protocols listed for the specific illness they are trying to address. I have seen published reports with dosing for specific viruses as well as for general infection.

I don't know why it has not been moved forward as a treatment candidate, especially for patients that appear to have chronically reactivating viruses. Possibly the high cost of medication and infusions as well as the complexity of administration.

I don’t think the costs are that expensive in IndiaMart compared to Valcyte for example. The side effect profile also looks much better than Valcyte Cidofovir etc

The only problem is the administration, but I believe it’s possible to do. Just don’t know for how long, since long term daily IV is not viable for sure

About the dosage, what did you find out? 24mg injection per day?

 

[Dan_USAAZ]

I don’t think the costs are that expensive in IndiaMart compared to Valcyte for example. The side effect profile also looks much better than Valcyte Cidofovir etc

The only problem is the administration, but I believe it’s possible to do. Just don’t know for how long, since long term daily IV is not viable for sure

About the dosage, what did you find out? 24mg injection per day?

The dosage recommendations appear to be body weight dependent and may vary depending on the condition they are treating.

The example I quoted in an earlier post of this thread recommended 90mg/kg slow infusion( 1 - 2 hrs) bid for 2 to 3 weeks.