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HHV-6/EBV testing UK? / Remitting symptoms on Molnupiravir?

Messages
11
Location
UK
Can anyone recommend a private UK clinic that offers testing and treatment for underlying EBV, HHV-6 etc infections? Has anyone else experienced a lessening of ME symptoms after taking Molnupiravir or any other Covid treatment?

I've had ME since 2006, varying from mild to severe across the years. I caught Covid in 2022, which left me mostly bedbound for a year with new Long Covid symptoms. I caught Covid again in 2023 and this time was treated with the antiviral Molnupiravir. After a few weeks recovering from Covid, my ME/CFS symptoms all vanished and for a few weeks I felt absolutely normal, could exercise, no PEM, no pain, no other ME symptoms at all. After a few weeks my ME symptoms gradually returned and I am now back to moderate ME/CFS (although my Long Covid symptoms stay improved after the antivirals).

I'd like to find out if I have an underlying virus that was treated by the Molnupiravir, and if so, whether I can replicate that effect. The virus that initially triggered the ME included vastly swollen and painful lymph nodes in my neck (so swollen that the side of my face went numb). I think at the time I was tested and found to be negative for EBV but I can't be sure. The swollen and painful lymph nodes have repeated over the years, sometimes requiring a course of antibiotics to quell them. Each time a doctor has told me 'you must have a virus' with no suggestion of what that might be, and without me having any other symptoms. Various blood tests over the years show a high white blood cell count and each time the doctor will tell me that I must be fighting something. I wonder if this could be HHV-6 or a similar virus reactivating.

A more minor thing I also noticed is that between 2021 and 2023 I had constant flare ups of cold sores on my nose (herpes simplex, HSV1) and since taking Molnupiravir I have had no further cold sores. I'm not suggesting that the Molnupiravir directly treated the HSV1 but I wonder if in treating a different underlying virus it allowed my immune system to get slightly on top of things again.

I have asked my GP for advice on HHV-6 testing (either on the NHS or privately) and he has said he will look into it but I'm not convinced, and I have been able to find very little in the way of testing and no one with expertise. I have asked my Long Covid doctor, who had no information. No other healthcare practitioners have shown any interest in my briefly remitting symptoms, other than telling me that it must have been nice. I will be writing to the leads on the HHV-6 study that is about to start in the UK, but other than that I am out of ideas. Any help very much appreciated.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,131
Location
australia (brisbane)
Can anyone recommend a private UK clinic that offers testing and treatment for underlying EBV, HHV-6 etc infections? Has anyone else experienced a lessening of ME symptoms after taking Molnupiravir or any other Covid treatment?

I've had ME since 2006, varying from mild to severe across the years. I caught Covid in 2022, which left me mostly bedbound for a year with new Long Covid symptoms. I caught Covid again in 2023 and this time was treated with the antiviral Molnupiravir. After a few weeks recovering from Covid, my ME/CFS symptoms all vanished and for a few weeks I felt absolutely normal, could exercise, no PEM, no pain, no other ME symptoms at all. After a few weeks my ME symptoms gradually returned and I am now back to moderate ME/CFS (although my Long Covid symptoms stay improved after the antivirals).

I'd like to find out if I have an underlying virus that was treated by the Molnupiravir, and if so, whether I can replicate that effect. The virus that initially triggered the ME included vastly swollen and painful lymph nodes in my neck (so swollen that the side of my face went numb). I think at the time I was tested and found to be negative for EBV but I can't be sure. The swollen and painful lymph nodes have repeated over the years, sometimes requiring a course of antibiotics to quell them. Each time a doctor has told me 'you must have a virus' with no suggestion of what that might be, and without me having any other symptoms. Various blood tests over the years show a high white blood cell count and each time the doctor will tell me that I must be fighting something. I wonder if this could be HHV-6 or a similar virus reactivating.

A more minor thing I also noticed is that between 2021 and 2023 I had constant flare ups of cold sores on my nose (herpes simplex, HSV1) and since taking Molnupiravir I have had no further cold sores. I'm not suggesting that the Molnupiravir directly treated the HSV1 but I wonder if in treating a different underlying virus it allowed my immune system to get slightly on top of things again.

I have asked my GP for advice on HHV-6 testing (either on the NHS or privately) and he has said he will look into it but I'm not convinced, and I have been able to find very little in the way of testing and no one with expertise. I have asked my Long Covid doctor, who had no information. No other healthcare practitioners have shown any interest in my briefly remitting symptoms, other than telling me that it must have been nice. I will be writing to the leads on the HHV-6 study that is about to start in the UK, but other than that I am out of ideas. Any help very much appreciated.

Alot of countries and I have also heard in the UK, that there are private labs that will do blood work without the need of a doctor. I think a Google search should find something quickly.

As for treatments, some who couldn't get treatments from their dr have sourced antivirals online like valtrex or famvir to help treat the herpes viruses commonly found in cfs like ebv, cmv, hhv6. Just a thought 🤔😉.
 

Treeman

Senior Member
Messages
812
Location
York, England
Have you asked your GP to send you to see an immunologist? If your having problems with your immune system that should be the place to go to. If they won't agree ask them to test your immunoglobulins as a minimum.

I'm a patient at immunology in the NHS and they found some issues.

I get repeat shingles infections and take aciclovir in an attempt to control it.

Whilst at immunology they agreed to test me for all the infections that are the usual suspects.

Good luck.
 
Messages
11
Location
UK
Have you asked your GP to send you to see an immunologist? If your having problems with your immune system that should be the place to go to. If they won't agree ask them to test your immunoglobulins as a minimum.

I'm a patient at immunology in the NHS and they found some issues.

I get repeat shingles infections and take aciclovir in an attempt to control it.

Whilst at immunology they agreed to test me for all the infections that are the usual suspects.

Good luck.
Thank you, that's really helpful. No one has ever suggested immunology, so I didn't know it was an option. I will follow up on this with my GP.
 
Messages
11
Location
UK
Alot of countries and I have also heard in the UK, that there are private labs that will do blood work without the need of a doctor. I think a Google search should find something quickly.

As for treatments, some who couldn't get treatments from their dr have sourced antivirals online like valtrex or famvir to help treat the herpes viruses commonly found in cfs like ebv, cmv, hhv6. Just a thought 🤔😉.
Thanks. I have done a Google search and I was expecting loads of results or ads for private clinics to pop up but so far I have found only one place that does testing (with no details of if it's the right type of testing) and none that offer treatment. Buying famvir or valtrex online in the UK requires a prescription or consultation, but if anyone can recommend a site where I can just buy, I would welcome suggestions.
 

Cipher

Administrator
Messages
1,001
Thanks. I have done a Google search and I was expecting loads of results or ads for private clinics to pop up but so far I have found only one place that does testing (with no details of if it's the right type of testing) and none that offer treatment. Buying famvir or valtrex online in the UK requires a prescription or consultation, but if anyone can recommend a site where I can just buy, I would welcome suggestions.

You might find these links helpful:
https://mecfsroadmap.altervista.org/
http://forums.phoenixrising.me/inde...iable-and-trustworthy-online-pharmacies.8113/
 
Last edited:
Messages
48
Hi @FoxgloveFever
Back in 2022 I got private testing for EBV/CMV/HHV6 etc in london. From memory, I used Medichecks for most of it, but Blue Horizon testing for HHV6 as I couldn’t get that through Medichecks. You order the tests online and they send you a testing kit. You then take that to a private phlebotomist and post the sample back. It was expensive but I was so incredibly sick and desperate.

My test results showed reactivated EBV and CMV. My NHS doctor and my long covid doctor weren’t interested. So I paid for a functional medical doctor at a private clinic called Harpal and sent him the test results in advance, along with some studies like Lerner etc. The doctor prescribed antivirals (valtrex. And valcyte) on the first visit. Later on I got follow up bloods at his clinic and they weren’t any cheaper than the Medichecks ones, so doing it in my own first meant I got the script on the first appointment. But oh my the whole thing was so expensive.

If I had the appetite to skip the doctor prescription, I could have done the blood tests myself and then ordered the antivirals from online pharmacy in eg India that doesn’t ask for a prescription. I wanted to do it with a doctor though to get regular blood tests to check my kidney and liver function.
 
Messages
48
Ps if you go this route, I really hope the antivirals help you. I was on them for a year and spent £10K and they didn’t help me 😔
 
Messages
11
Location
UK
Hi @FoxgloveFever
Back in 2022 I got private testing for EBV/CMV/HHV6 etc in london. From memory, I used Medichecks for most of it, but Blue Horizon testing for HHV6 as I couldn’t get that through Medichecks. You order the tests online and they send you a testing kit. You then take that to a private phlebotomist and post the sample back. It was expensive but I was so incredibly sick and desperate.

My test results showed reactivated EBV and CMV. My NHS doctor and my long covid doctor weren’t interested. So I paid for a functional medical doctor at a private clinic called Harpal and sent him the test results in advance, along with some studies like Lerner etc. The doctor prescribed antivirals (valtrex. And valcyte) on the first visit. Later on I got follow up bloods at his clinic and they weren’t any cheaper than the Medichecks ones, so doing it in my own first meant I got the script on the first appointment. But oh my the whole thing was so expensive.

If I had the appetite to skip the doctor prescription, I could have done the blood tests myself and then ordered the antivirals from online pharmacy in eg India that doesn’t ask for a prescription. I wanted to do it with a doctor though to get regular blood tests to check my kidney and liver function.
Thank you for this. It's really helpful and I really appreciate you sharing your story,
 

andyguitar

Senior Member
Messages
6,648
Location
South east England
I'd like to find out if I have an underlying virus that was treated by the Molnupiravir, and if so, whether I can replicate that effect. The virus that initially triggered the ME included vastly swollen and painful lymph nodes in my neck (so swollen that the side of my face went numb). I think at the time I was tested and found to be negative for EBV but I can't be sure.
I hav'nt seen any evidence that it can treat EBV. But it can help against flu and other types of corona virus.
 

Violeta

Senior Member
Messages
3,014
I don't know what to think about this at the moment, but just read this.

Preliminary research suggests that people with herpes simplex or herpes zoster (shingles) infections may have low levels of AMP; however, the clinical significance of this finding is unclear.

Looks like it applies to HHV 1, too.

Adenosine monophosphate (AMP) is a natural cellular metabolite that can be an effective treatment for recurrent herpes simplex virus type 1 (HSV-1). When administered to mice shortly after being inoculated with HSV-1, AMP can inhibit the development of virus-induced lesions, prevent the establishment of virus latency, and accelerate the regression of lesions. The dose and time of AMP administration are both factors that affect these effects. For example, pretreatment of mice with latent HSV-1 infections with AMP significantly reduces the rate of reactivation of the latent virus.
 
Messages
12
You can get these tests done at the clinic Breakspear Medical in Hertfordshire, they also test for other infections too! Once the results are back, if they are positive they can prescribe medications and / or recommend natural treatment alternatives too

I took acyclovir for EBV and saw a lot of improvement. A few years down the line I had an ME / CFS relapse, retested EBV and it was active again so tried to treat it again with acyclovir and saw no improvement. It turned out something else was causing me to be ill at that time! So just because you have an active infection it doesn't necessarily mean that is what is making you ill but it could be!
 
Messages
11
Location
UK
You can get these tests done at the clinic Breakspear Medical in Hertfordshire, they also test for other infections too! Once the results are back, if they are positive they can prescribe medications and / or recommend natural treatment alternatives too

I took acyclovir for EBV and saw a lot of improvement. A few years down the line I had an ME / CFS relapse, retested EBV and it was active again so tried to treat it again with acyclovir and saw no improvement. It turned out something else was causing me to be ill at that time! So just because you have an active infection it doesn't necessarily mean that is what is making you ill but it could be!
Thank you! This is SO helpful, and is a clinic I can actually get to.
 

godlovesatrier

Senior Member
Messages
2,569
Location
United Kingdom
Just an fyi this happened to me on molnu too - at least I experienced 90% for four months and then relapsed.

I now have long covid tho so not sure that will happen again.

You not hitting ebv btw, molnu won't touch it. You're prob hitting covid and maybe another vna virus that causes your ME, like an entereovirus.
 
Messages
11
Location
UK
Just an fyi this happened to me on molnu too - at least I experienced 90% for four months and then relapsed.

I now have long covid tho so not sure that will happen again.

You not hitting ebv btw, molnu won't touch it. You're prob hitting covid and maybe another vna virus that causes your ME, like an entereovirus.
Thanks. If you have any links to relevant research on Molnu, please feel free to share.
 

godlovesatrier

Senior Member
Messages
2,569
Location
United Kingdom
Do you mean research papers about what it attacks?

https://pubmed.ncbi.nlm.nih.gov/35746614/ just this one

Enterovirus infections can cause hand, foot, and mouth disease (HFDM), aseptic meningitis, encephalitis, myocarditis, and acute flaccid myelitis, leading to death of infants and young children. However, no specific antiviral drug is currently available for the treatment of this type of infection. The Unites States and United Kingdom health authorities recently approved a new antiviral drug, molnupiravir, for the treatment of COVID-19. In this study, we reported that molnupiravir (EIDD-2801) and its active form, EIDD-1931, have broad-spectrum anti-enterovirus potential. Our data showed that EIDD-1931 could significantly reduce the production of EV-A71 progeny virus and the expression of EV-A71 viral protein at non-cytotoxic concentrations. The results of the time-of-addition assay suggest that EIDD-1931 acts at the post-entry step, which is in accordance with its antiviral mechanism. The intraperitoneal administration of EIDD-1931 and EIDD-2801 protected 1-day-old ICR suckling mice from lethal EV-A71 challenge by reducing the viral load in various tissues of the infected mice. The pharmacokinetics analysis indicated that the plasma drug concentration overwhelmed the EC50 for enteroviruses, suggesting the clinical potential of molnupiravir against enteroviruses. Thus, molnupiravir along with its active form, EIDD-1931, may be a promising drug candidate against enterovirus infections.

as for ebv it's a dna virus, therefore impossible that molnu would touch it as it only effects rna viruses - covid is an rna virus.

ME can be caused by lots of different bacterial infections and viruses, covid is one of them, so is pb-19, coxsackie b4, echo virus, d-68, toxoplasmosis, lyme disease, chlymydia pneuomnie. The list goes on but there's a snapshot. https://mecfsroadmap.altervista.org/ I'd advise reading this to understand antivirals a bit better.

If LC patients could ever get there hands on a decent antiviral that antiviral in combination with valtrex would be a good idea, or a better ebv antiviral - which currently doesn't exist. I've taken valtrex for over 2 years it's kept me in full time work and prevented vastly worse health outcomes. Sadly LC sort of sets all that back.

Hope this helps.
 
Messages
11
Location
UK
Do you mean research papers about what it attacks?

https://pubmed.ncbi.nlm.nih.gov/35746614/ just this one



as for ebv it's a dna virus, therefore impossible that molnu would touch it as it only effects rna viruses - covid is an rna virus.

ME can be caused by lots of different bacterial infections and viruses, covid is one of them, so is pb-19, coxsackie b4, echo virus, d-68, toxoplasmosis, lyme disease, chlymydia pneuomnie. The list goes on but there's a snapshot. https://mecfsroadmap.altervista.org/ I'd advise reading this to understand antivirals a bit better.

If LC patients could ever get there hands on a decent antiviral that antiviral in combination with valtrex would be a good idea, or a better ebv antiviral - which currently doesn't exist. I've taken valtrex for over 2 years it's kept me in full time work and prevented vastly worse health outcomes. Sadly LC sort of sets all that back.

Hope this helps.
Thank you, that's all fantastic. I really hope you get some relief from LC.
 

Hip

Senior Member
Messages
17,976
I'd like to find out if I have an underlying virus that was treated by the Molnupiravir, and if so, whether I can replicate that effect.

My understanding is that molnupiravir only works for RNA viruses, and has broad-spectrum activity against RNA viruses. It does not work for DNA viruses such as the herpesviruses (EBV, HHV-6, cytomegalovirus, etc).

So I guess molnupiravir might potentially work for like enteroviruses (coxsackievirus B and echovirus), which like SARS-CoV-2 are RNA viruses. These enteroviruses have long been linked to ME/CFS.

Unfortunately testing for coxsackievirus B and echovirus is not straightforward, as there are only a few labs which offer the suitably sensitive antibody neutralisation test that Dr Chia recommends for testing chronic enterovirus infections in ME/CFS.
 
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