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

[FoxgloveFever]

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]

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]

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.

 

[FoxgloveFever]

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.

 

[FoxgloveFever]

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]

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/

 

[Treeman]

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.

Your welcome, keep us posted.

 

[FoxgloveFever]

You might find these links helpful:
https://mecfsroadmap.altervista.org/
http://forums.phoenixrising.me/inde...iable-and-trustworthy-online-pharmacies.8113/

Thank you! I will look into those.

 

[elliem]

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.

 

[elliem]

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 😔

 

[FoxgloveFever]

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]

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]

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.

 

[emmablondevoyage]

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!