If intermittent EBV reactivation drives long COVID and MS, it should respond to EBV antiviral strategies. I am aware that many pwMS have started taking antivirals off-label to manage their MS ....
(All the drama both MS and neuro PASC - ten months)
Antivirals again in November and a good chunk of the fatigue reduced. Lytic reactivation slowed (stopped?). Immune system started rebalancing.
But the damaged B memory cells continued to cause issues (theory) until I started Kesimpta. Which tidied up both MS and clobbered PASC as well??!!?? (Monoclonal antibody).
In my experienced, old damaged cells must be cleared out as well. Mavenclad was the bomb for me however in Covid era, IRT is not working.
Bring on vidofludimus calcium (IMU838) which has antiviral, antiinflammatory properties and is currently in trials for RRMS, SPMS, PPMS - AND celiac disease. I know we shouldn’t get excited about pipeline drugs but if I could find one thing to manage MS and comorbid EBV AND celiac disease … well .. that would be cool.
Here’s the thing. There will never be good research funded because the valacyclovir that works well for me is not going to support a pharma drug company trial. What to do?
AND - what if it’s just a cohort of us? I happen to have the severity gene which is an area of viral control/damage restoration. Is it just us? Which could be a small proportion of those with MS.
But if we are managed properly - well after being considered secondary, I’m now doing better than I have since 2012. (Also a ton of neuro rehab to fix then maintain gait).
Which means trials could literally show no statistically *significant* improvement.
Please please please join Bluesky. I’ve got an MSMindMapping Starter pack I need you in, and I’d love this post shared there as well.
It is a very safe space, low stress, nuclear block capacity and the lack of stress is very good for your audience :).
Vidofludimus Calcium is also being trialled in long COVID. If it lives up to its early promise, it deserves a lot more attention than it seems to be getting.
I'm curious, do you also have celiac? I have PPMS, or at least that's the diagnosis, I don't have any disability, just some neuropathy. Spinal cord lesions only. I'm doing well enough that given I'm getting close to 60 my neuro doesn't want me on ocrevus. I see a functional medicine doctor as I've always had a bad, gut and I'm hypothyroid. All my testing over the years has suggested that there's been something underlying as I've got hypogammaglobulinemia and macrocytic anemia. So I'm now being tested for celiac as I have the typical rash and other associated symptoms.
Thank you for the starter pack! I've followed everyone (I'm @nicolaz...) A question: what antiviral dosage and schedule do you follow? (I have some valcyclovir stashed away for those sudden sun-related cold sores) and am considering trying it for MS.
Here is a list of pharma I’ve taken, prescribed or recommended by MS neuros, for fatigue/pain or cognition.
Cymbalta
Pregabalin
Gabapentin
Amitriptyline
Nortriptyline
Ritalin
Modafinil
.. probably more I can’t remember.
All but the modafinil were disastrous.
Off label meds I’ve been lucky to take that worked well on **all of those symptoms** with no awful adverse effects, via brave GPs. All three of these a hard pass from neurologists.
Acyclovir
Valacyclovir
LDN
My question:
Were there actual trials for list 1 ever in the MS population?
If not, how did they become commonplace scripts from our neuros despite being off label?
Last, how on earth do we move the sometimes incredibly useful list 2 to list 1?
Genuinely curious if somehow the MS patient community could play a role.
“It is remarkable how many pwMS have contacted me to tell me how well they are doing on antivirals……Please note that I can not sanction the use of off-label antiviral medications to treat MS. Antivirals need to be tested in well-designed, randomised controlled trials.”
Thank God we had some risk takers in the past such as Edward Jenner. Today we are constrained by “safety” (even for devastating diseases) and a system dominated by pharma company interests (they will never allow trials of any relatively cheap anti-virals which might impact their huge revenues from MS drugs).
Surely, there’s a middle ground. Some system to allow those taking anti-virals for their MS to record what they are taking and the perceived advantages/ disadvantages. At least those thinking of going this route would have some information to help them. You have been saying for a long time that you think EBV is the cause and/or driver of MS - so you can’t blame patients for experimenting with anti-virals.
There’s something wrong with the current system where some patients are deciding to buy anti-virals online (or perhaps getting them prescribed by a doctor) because the anti-viral MS trials never get going. It’s a pity the MS Society didn’t fund an anti-viral trial rather than waste millions on MS Smart and MS Stat.
I follow a number of Long Covid accounts and I am always surprised how similar the symptoms sound to MS. I have been wondering: if pwMS take B cell depletion therapies to possibly remove the EBV viral persistence in the B cell, could the same be tried for LC patients?
I took an anti-HIV drug -PrEP - for 3 months (obtained from Superdrug) but it didn't seem to have any effect on my SPMS.(mobility/ continence) I have read there is a trial into PrEP and MS taking place in the US as well as the Bergen/ Norway trial which looks at a similar HIV medication on MSers so this is obviously an are of active research.
Did you have success with fatigue or balance? Mobility takes a lot more work than simply an antiviral - I’m 7.5 years in on rehab and maintenance for mobility.
Hi KC I am lucky in that I don't have major problems with balance. I suspect exercise is the key here. Fatigue is manageable but it often stops you doing the exercise which would probably be beneficial in this area too. I didn't notice one month's PrEP affecting balance or fatigue. The US patients group backing the MS/ PrEP trial is https://www.solvingms.org/news
Dear Prof, regarding TAF, since it works in the periphery, as less than 1% gets into the CSF (very poor BBB penetration). It probably only block EBV reactivation outside of the brain, would that be enough? For optimal efficiency, shouldn't antiviral therapy also target intracranial EBV? Could you give your insights? Thanks!
Had MS many years. Not on any medication, A notable feature over the years has been that I feel much better than usual physically and mentally when I am incubating a viral infection. Recently had a few days of feeling great followed by being unwell with a bad cold. There's a correlation between the period of feeling well and the viral attack. Longer the period of wellness the worse the viral attack. Well remember in the 1980's during the Aids crisis reading an article saying that no one with MS had ever got Aids - no idea if this is right but could one virus such as a cold virus dampen down the MS virus (if indeed there is an MS virus.) If there was a virus that took a number of years to incubate if we were inoculated with it might it dampen down the MS?
I am the total opposite John, I can feel utterly dreadful incubating a viral infection, the worse I feel in the days leading up to it the more prolonged the viral attack. As soon as i feel it starting I go to ground trying to prevent it worsening but it feels out of my control.
I took antivirals this summer for Covid - Paxlovid - and felt better once I came off them.
I was off antivirals last time I had Covid.
EBV Reactivated early 2022 - 6 weeks.
New quiet lesion August 7 MRI.
Got Covid end of August.
(All the drama both MS and neuro PASC - ten months)
Antivirals again in November and a good chunk of the fatigue reduced. Lytic reactivation slowed (stopped?). Immune system started rebalancing.
But the damaged B memory cells continued to cause issues (theory) until I started Kesimpta. Which tidied up both MS and clobbered PASC as well??!!?? (Monoclonal antibody).
In my experienced, old damaged cells must be cleared out as well. Mavenclad was the bomb for me however in Covid era, IRT is not working.
Bring on vidofludimus calcium (IMU838) which has antiviral, antiinflammatory properties and is currently in trials for RRMS, SPMS, PPMS - AND celiac disease. I know we shouldn’t get excited about pipeline drugs but if I could find one thing to manage MS and comorbid EBV AND celiac disease … well .. that would be cool.
Here’s the thing. There will never be good research funded because the valacyclovir that works well for me is not going to support a pharma drug company trial. What to do?
AND - what if it’s just a cohort of us? I happen to have the severity gene which is an area of viral control/damage restoration. Is it just us? Which could be a small proportion of those with MS.
But if we are managed properly - well after being considered secondary, I’m now doing better than I have since 2012. (Also a ton of neuro rehab to fix then maintain gait).
Which means trials could literally show no statistically *significant* improvement.
Please please please join Bluesky. I’ve got an MSMindMapping Starter pack I need you in, and I’d love this post shared there as well.
It is a very safe space, low stress, nuclear block capacity and the lack of stress is very good for your audience :).
Vidofludimus Calcium is also being trialled in long COVID. If it lives up to its early promise, it deserves a lot more attention than it seems to be getting.
Just followed your starter pack
Thanks so much!
I followed your starter pack on Bluesky a few days ago. Thank you for creating it and yes to Dr Giovanonni coming to Bluesky.
I'm curious, do you also have celiac? I have PPMS, or at least that's the diagnosis, I don't have any disability, just some neuropathy. Spinal cord lesions only. I'm doing well enough that given I'm getting close to 60 my neuro doesn't want me on ocrevus. I see a functional medicine doctor as I've always had a bad, gut and I'm hypothyroid. All my testing over the years has suggested that there's been something underlying as I've got hypogammaglobulinemia and macrocytic anemia. So I'm now being tested for celiac as I have the typical rash and other associated symptoms.
Thank you for the starter pack! I've followed everyone (I'm @nicolaz...) A question: what antiviral dosage and schedule do you follow? (I have some valcyclovir stashed away for those sudden sun-related cold sores) and am considering trying it for MS.
One more observation …
Here is a list of pharma I’ve taken, prescribed or recommended by MS neuros, for fatigue/pain or cognition.
Cymbalta
Pregabalin
Gabapentin
Amitriptyline
Nortriptyline
Ritalin
Modafinil
.. probably more I can’t remember.
All but the modafinil were disastrous.
Off label meds I’ve been lucky to take that worked well on **all of those symptoms** with no awful adverse effects, via brave GPs. All three of these a hard pass from neurologists.
Acyclovir
Valacyclovir
LDN
My question:
Were there actual trials for list 1 ever in the MS population?
If not, how did they become commonplace scripts from our neuros despite being off label?
Last, how on earth do we move the sometimes incredibly useful list 2 to list 1?
Genuinely curious if somehow the MS patient community could play a role.
Post was truncated.
1. Were there trials for list 1 specific to the MS population?
2. If no, how did these prescriptions move to common usage for MS? And how long did this take?
3. How to move list 2 options to list 1. And I’m fairly certain the LDN was also helping my system navigate EBV as well.
“It is remarkable how many pwMS have contacted me to tell me how well they are doing on antivirals……Please note that I can not sanction the use of off-label antiviral medications to treat MS. Antivirals need to be tested in well-designed, randomised controlled trials.”
Thank God we had some risk takers in the past such as Edward Jenner. Today we are constrained by “safety” (even for devastating diseases) and a system dominated by pharma company interests (they will never allow trials of any relatively cheap anti-virals which might impact their huge revenues from MS drugs).
Surely, there’s a middle ground. Some system to allow those taking anti-virals for their MS to record what they are taking and the perceived advantages/ disadvantages. At least those thinking of going this route would have some information to help them. You have been saying for a long time that you think EBV is the cause and/or driver of MS - so you can’t blame patients for experimenting with anti-virals.
There’s something wrong with the current system where some patients are deciding to buy anti-virals online (or perhaps getting them prescribed by a doctor) because the anti-viral MS trials never get going. It’s a pity the MS Society didn’t fund an anti-viral trial rather than waste millions on MS Smart and MS Stat.
I have noticed that when I take valacyclovir prescribed me for occasional fever blisters that I feel so
much better. Since they are quite severe, my primary care
doctor writes Rx every year during my physical to have on hand in case.
I’ve been tempted to try it off-label.
I follow a number of Long Covid accounts and I am always surprised how similar the symptoms sound to MS. I have been wondering: if pwMS take B cell depletion therapies to possibly remove the EBV viral persistence in the B cell, could the same be tried for LC patients?
I took an anti-HIV drug -PrEP - for 3 months (obtained from Superdrug) but it didn't seem to have any effect on my SPMS.(mobility/ continence) I have read there is a trial into PrEP and MS taking place in the US as well as the Bergen/ Norway trial which looks at a similar HIV medication on MSers so this is obviously an are of active research.
Did you have success with fatigue or balance? Mobility takes a lot more work than simply an antiviral - I’m 7.5 years in on rehab and maintenance for mobility.
Hi KC I am lucky in that I don't have major problems with balance. I suspect exercise is the key here. Fatigue is manageable but it often stops you doing the exercise which would probably be beneficial in this area too. I didn't notice one month's PrEP affecting balance or fatigue. The US patients group backing the MS/ PrEP trial is https://www.solvingms.org/news
Dear Prof, regarding TAF, since it works in the periphery, as less than 1% gets into the CSF (very poor BBB penetration). It probably only block EBV reactivation outside of the brain, would that be enough? For optimal efficiency, shouldn't antiviral therapy also target intracranial EBV? Could you give your insights? Thanks!
See my comment.
Gavin, most of us had Valaciclovir after HSCT. Does Valaciclovir have a similar response on ebv to the antiviral being trialed for ms?
Valaciclovir has relatively weak activity against EBV.
Which anti viral is the best one?
Had MS many years. Not on any medication, A notable feature over the years has been that I feel much better than usual physically and mentally when I am incubating a viral infection. Recently had a few days of feeling great followed by being unwell with a bad cold. There's a correlation between the period of feeling well and the viral attack. Longer the period of wellness the worse the viral attack. Well remember in the 1980's during the Aids crisis reading an article saying that no one with MS had ever got Aids - no idea if this is right but could one virus such as a cold virus dampen down the MS virus (if indeed there is an MS virus.) If there was a virus that took a number of years to incubate if we were inoculated with it might it dampen down the MS?
I am the total opposite John, I can feel utterly dreadful incubating a viral infection, the worse I feel in the days leading up to it the more prolonged the viral attack. As soon as i feel it starting I go to ground trying to prevent it worsening but it feels out of my control.
I took antivirals this summer for Covid - Paxlovid - and felt better once I came off them.
MS is such a confusing and individual disease.
Me too.
TAF (tenofovir alafenamide) as well, only recently so not yet an idea if it's helping.... Hoping to hear some experiences of other pwMS taking TAF.
Yes, Tenofovir Alafenamide
What is Bluesky and how would I find your starter pack please?
Gavin,
I've had long COVID since March 2023 and have been following your MS blog for a while due to your fascinating takes on EBV and CAR-T.
This is one of the most interesting case studies I've read for long COVID related to viral persistence and you might find it interesting: https://www.sciencedirect.com/science/article/pii/S073567572300534X#:~:text=Meaning%3A%20Certain%20monoclonal%20antibody%20infusions,including%20future%20long%20COVID%20variants.
FWIW I'd love to know what antivirals people have been taking to manage MS.