I have advanced Ms, use a wheelchair but my main issues are with legs and arms. I had seven! Vaccinations and have worn a mask in populated areas since 2020 but did contract COVID once while on holiday despite still wearing a mask and eating outdoors.
COVID worsened my arms and my hands were almost useless. I had antivirals IV on day 3 and my hands are pretty much back to normal 4 months later.
I'm concerned as my neurologist really downplays covid saying that his many patients have very mild symptoms and while he does not say not to have vaccinations, he has said that they are not that important as COVID is very mild and the vaccination is not that efficacious!
He thinks my constant mask wearing is probably over cautious.
The new variants are definitely milder and less likely to cause severe disease and long-COVID. However, there is still a small chance of getting severe disease. Please note this is on the backdrop of increasing herd immunity so we need to be thankful for the vaccines and boosters for helping.
It is still best to avoid getting an infection if you can so being cautious makes sense.
Thank you for replying. Is the increasing concern about vaccination side effects still unwarranted? Originally it was all anti-vaxers but now some medics are concerned about issues relating to the covid vaccination. For example, in relation to the heart.
It sounds like your neurologist is not very supportive. Even if vaccinations were only weakly efficient--which is not true--at least SOMETHING is better than nothing. Even though that might not be so with every condition, in the case of Covid in general it certainly is. And if a mask makes you feel safer, then you should be supported gladly. Pardon my profanity... but, screw the naysayers and the people with the disdainful looks! You have every right to be as protected as you can (although driving down the street in a tank might be a little much). Also, if I hear one more anti-vaxxer call a mask a "face diaper," I will put their name and address on every list I can find soliciting home visits: encyclopedia sellers, census takers, Jehovah's witnesses, etc! Unless it is harmful or contraindicated (or illegal), your doctor should always be your advocate.
I've had covid twice and in both cases it was mild, probably because I have had all the vaccinations. I have accessed the antivirals each time, although in the second case (not diagnosed for a good few days) I suspect it was too late to make a difference anyway. In view of your comments, should I get antivirals regardless of whether I feel they are necessary? It's something of a procedure to access them, particularly as I travel frequently.
The point of antivirals is to prevent severe infection. When you start off with an infection you have no idea how severe it is going to be, which is why I recommend that all 'vulnerable' patients try and access antivirals if they have COVID-19.
“I have noted that many of my patients with low levels of disability have been complaining of not getting back to their premorbid or pre-COVID-19 baseline. Why?”
My initial impression of the question, without going through comments yet- Once you have Covid, you are going to pay more attention to your symptoms than you otherwise would. Worsening would have happened anyway, but you wouldn’t have been paying as much attention so you wouldn’t have noticed it. Or, you hadn’t noticed something before, but you are paying closer attention now. At the same time, people with severe Covid and some comorbidities show clear biological damage. So statistically, isn’t that a double whammy? Noteworthy also, how healthy were the healthy controls? We didn’t get to look at their brains after covid. How many of them got sick but still keep it a secret?
Avoid crowded places. Wear N95 masks. Step back from others in lines. Breath lightly or not at all; walk away, around coughers. I’ve been fully vaxxed all along and have yet to contract it. My wife wears the mask, working in a public setting, and has not contracted it either. We live in denial land Pennsylvania USA as well.
Poor communication on this- people never should have been led to believe that vaccines would STOP transmission. Should have been told the truth that only N95 masks can offer reliable protection. As time goes on, we forget the million+ who died and forget that they all caught it from someone else. I am happy to have used caution and still do. Why take the chance? Whatever the truth, “it was China’s fault” (as if that makes some kind of a difference).
You get the point, I think. Move away, get out of line and go somewhere else, breath lightly and from a different direction if you have to stay. Obviously you can't stop breathing, but if someone is coughing vigorously, you want to avoid it. Some people just don't give a damn.
Hi, professor G. My question is: I had Covid in December 2023, mild to severe cold-like symptoms, no antivirals or antibiotics, not bed-bound, felt substantially better after 6 days. Still, in day 10, even though my symptoms were 90% gone (only some cough left), I was still testing positive. I talked to an infectious doctor who said the reason must be my DMT: Kesimpta, and that it would take a while for my body to eliminate the virus. I have not had a test after that, because I was sure that if it were still positive, I would freak out. I did not have a Covid rebound and did not have an MS flare.
My concern is: was I still contagious on day 10, in my particular case? And are pwMS contagious longer than people who do not have MS, in general? Thanks for taking the time to answer.
Being infected with a new variant acts as a booster and may provide better immunity that the existing boosters that are usually behind the current strains.
Yes, you may still be contagious. The immunosuppressed who can't clear the virus are the breeding ground for new variants. There are some examples in the literature of bone marrow transplant and HIV-AIDS patients shedding infectious virus for months.
Yes, and maybe sooner. The PCR tests remain positive for several days after you become non-infectious. The story is different with lateral flow test in that they are detecting protein and not nucleic acids. You have to assume that you are infectious if your lateral flow test is positive. However, as viral loads fall you become less infectious.
The only way to convince them is that worsening post-COVID-19 is more common than with other viruses and is associated with evidence of end-organ CNS tissue damage using biomarkers (MRI, NFL levels, etc...).
Covid is known to reactivate EBV. As EBV is linked to MS, it is possible that the reactivated EBV causes MS worsening. I suspect there will be an increase in MS cases worldwide over the next 5 years.
That will be interesting to see. Interestingly may neurologist posited that my covid vaccination might have reactivated EBV. Soon after vaccination I began having very intense neuropathy in my lips chin and hands. That lasted 14 months happening a few times a week. 5 months after vaccination I underwent MRIs for potential back surgery, that showed cervical spinal cord lesions. A couple of months after that I had a diagnosis of MS. Prior to vaccination I had no health issues. Since vaccination I have an MS diagnosis and a large thyroid nodule. If the vaccines flood the body with spike protein, much like the virus itself does I understand why my neurologist thinks it's possible.
To quote Gavin from a post further down “Please note that COVID-19 vaccination does not cause MS. MS has a prodromal phase that is years, potentially up to a decade. So if you develop MS now it was caused by environmental exposures many years ago.”
I look at it as the trigger. No doubt I was already inflamed. Since diagnosis I've learned I'm gluten intolerant for example. I've completely changed how I eat and the differences are remarkable. The timing is interesting to say the least. I think a genetic predisposition may be at play as well. I have one sister who had pain and neuropathy within minutes of her first and only jab, that hasn't subsided and she had a recent diagnosis of fibromyalgia. Her rheumatologist has begun an investigation if lupus now. My other sister got her cycle back after having been through menopause, when that regulated itself shingles set in. My oldest son, 24 at the time, had a racing heart for a couple of days after jab 2, he's a triathlete, that's before they made the myocarditis connection. Our father had a stroke a month after his second jab. Correlation is not causation but wow we've had an interesting experience.
I caught Covid in hospital, having second half dose of Ocrevus. I was put on 5 days of Paxlovid. I then had Paxlovid rebound and was extremely ill for a further 5 weeks. It made zero difference to my MS at the time. However, there do need to be further trials of anti/retro virals for MS.
Yes the Paxlovid doesn't improve MS symptoms in everyone who gets it. But we do need to find out why it does for some, to better understand the role of antiviral therapy in MS. In addition to EBV, there are other pathogens, such as VZV, HSV-1,2 HHV-6, CMV, and Lyme that contribute too.
I'm on Siponimod and have had covid twice, in the past 2 years. Both times very mild. Both times, it worsened my symptoms for 3 days, but got better after less than a week. My partner who is fit and healthy was worse than me!! Both times were at the time of being about to be vaccinated, so as a result I have only had the very first 3 vaccinés. My neurologist thinks I have a very strong base immunity. I was a teacher for 35 years and was never ill .I'm very thankful!
We're all unique but I relate to your case some what. I had covic before the pfizer (which I received twice, then later I got covid again. Both times I had covid (pre and post vaccinations) was mild and gone in about 1 week. The vaccinations made me feel terrible for 1-2 days and vomited harshly both times . So my experience makes me consider not taking HSCT clinics advice to get vaxxed
Prof G, Paxlovid 5-day course is causing temporary remission of symptoms in MS, primary EBV, and Long Covid. Here are reports from patients with these EBV-associated diseases. With information on the the RECOVER-VITAL trial of Paxlovid for Long Covid and everything I could find on cross-disease collaboration on EBV. I hope this adds new info on treating EBV. And would it be possible to combine Tenofovir with Paxlovid, like the combos they do for HIV?
In the Paxlovid profile I noted the RECOVER-VITAL trial of Paxlovid for Long covid missed an opportunity to measure if Paxlovid is affecting EBV, since they aren't testing for changes in EBV. So we won't get the answer there.
Is anyone investigating how to make an effective dose of TAF to kill EBV in MS before it goes into a human trial? It would be a bummer to do a trial and find out years later the dose isn't right. Cell-assay tests could reveal the effect of Paxlovid on EBV, or effect of Paxlovid plus TAF, or effect of AVR plus an HDAC inhibitor. Then a short human biomarker trial to test safety and efficacy against EBV. Harvard has approached Tenofovir for EBV in MS with this approach, that's why it seems logical to extend it to these other agents that are showing an effect on EBV. before the longer-term efficacy trials.
Histone deacetylase inhibitors (HDACi) are used for better eradication of EBV in cancer. EBV lytic reactivation from latency is induced using HDACi so that the virus can be killed by other agents like chemo. But there are papers on nontoxic agents like curcumin, quercetin, and sodium butyrate that are also HDAC inhibitors for EBV, which could make it easier for TAF to eradicate EBV.
EBV also produces latent member protein 1 (LMP1), which can promote the survival and immortalization of B cells. EBV-infected B cells are involved in presenting antigenic peptides to T cells, so mitigating EBV would also calm down inflammatory T cells. Quercetin and curcumin can prevent EBV-driven B cell immortalization which leads to cancer, so could it do this in MS? Both of these flavonoids also have studies showing benefits for MS since they promote autophagy, are anti-oxidative, anti-inflammatory and Quercetin has remyelination potential. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10638059/
In your most recent editorial, it was great to see there are 7 case studies of MS remission due to Tenofovir Alafenamide reducing EBV in MS. A mention was made that TAF 25 mg dose may not be strong enough for EBV. Are there other drugs that could be added to make it more effective? Ritonavir in Paxlovid is meant to boost other drugs, but it doesn't do that with TAF, according to https://www.covid19-druginteractions.org/checker
Coadministration has not been studied but based on metabolism and clearance a clinically significant interaction is unlikely. Tenofovir alafenamide is metabolized to tenofovir (major metabolite) by carboxylesterase-1 and cathepsin. Nirmatrelvir/ritonavir is metabolized by CYP3A. Tenofovir alafenamide neither induces nor inhibits CYPs.
⬆️ This! That document is very thorough and her question is on point. Based on studies and real-world experiences, would a combination of tenofovir and Paxlovid have an effect on the EBV viral load? I think this combo hasn’t been formally studied but what are your off-the-cuff thoughts, Prof. G.?
FYI-many MS sufferers have contacted Pfizer re Paxlovid’s effect on easing MS symptoms but obviously, the 5 day course is too short. At the time, Pfizer claimed to have not known this. Their number is 800-879-3477. If other pwMS found that Paxlovid eased MS symptoms, they need to tell Pfizer.
I had bad pneumonia due to covid,and it took 2 months and 8 different antibiotics until I was cured. This was 2 years ago. I’ve been getting worse day by day since I finished with antibiotics. Getting worse started AFTER I was pneumonia-free, not during the infection. I was edss 1, was 3 in October, now I’m probably 4. Bladder is a mess (frequency,urgency, hesitancy, retention), and now I walk with a limp and can walk for 500m before resting. I’ve been on rituximab/Ocrevus since 2018,with no changes on MRI. I will probably get siponimod these days because I have frequent UTIs and doctors say I’m progressing to SPMS. I don’t know what the future holds. Will this progression stop at least, I’m not having hope I can get better but at least the progression might stop :-(
This could be a coincidence. The data suggesting COVID-19 triggers or causes MS is very poor. MS in fact one of the outliers compared to other autoimmune diseases.
I feel very lucky to have bounced back quickly from my two bouts of Covid, with no MS symptoms apparent.
However I did have a pseudo relapse for the first time last year when I had a cold - I thought there was some tingling in my fingers. Then not long after that I got norovirus on holiday in Morocco and had tingly fingers for weeks. Hated it. It made me realise how lucky I am not to have a constant reminder of my MS in ongoing symptoms. Of course I take my medication, but I've redoubled my efforts to maintain a healthy lifestyle too (not always easy in a new high-pressure role at work)
Sarah - I cannot encourage you enough to care for yourself as much as your job. I had a high pressure job(s) that I was good at and loved and MS that was pretty invisible until about 15 years in. I wish I had spent more time taking time to eat intelligently, relax fully, and take on a tai chi or yoga practice.
I had Covid in August of 2022 and called my Dr for Paxlovid which she prescribed. It stopped my fatigue and spasticity, I was so happy and when I went back to my Dr for follow up..I told her and of course she couldn’t prescribe anymore. I recently contacted Pfizer and asked if other people with MS had told them of positive results, they said no but wanted to know all about my symptom improvement.
As far as I know, I haven't gotten Covid yet. I've had all my jabs and boosters, and I'm very careful and wear a mask almost always. Getting Covid is not something I'm very worried about, but my partner is. My life has been so horrible, I have too much else to deal with. I'm still trying to live with what the NHS did to me, and how long it took to get any help for my MS.
In early 2020 my family suspected we were early undiagnosed Covid cases. Daughter was working for BA had been in China. She got sick, I got sick and her close friend. At that point the government were dilly dallying. I was on antibiotics for some time and had the worse cough. It was worse than whooping cough, had as a child. By April I slowly picked up but GP referred me to S&L. Had to have a phone consult as all staff were then on the wards. Had all the vacs and 2 more diagnosed Covid infections. Tried to get anti virals but system was useless. More antibiotics. What’s deteriorated most is my asthma. And cognition. So mentally drained very quickly. Reading a book is harder and harder. I tend to stick with short article reads. I miss reading a good book. Trouble is I’ve forgotten what it’s about if I leave it 4-5 days.
After the first vaccination I could not ‘run’ anymore and I’m still out of breath. So the vaccine made me ill. So aren't people with MS better off by taking enough vitamin D3 (with K2) instead?
I have advanced Ms, use a wheelchair but my main issues are with legs and arms. I had seven! Vaccinations and have worn a mask in populated areas since 2020 but did contract COVID once while on holiday despite still wearing a mask and eating outdoors.
COVID worsened my arms and my hands were almost useless. I had antivirals IV on day 3 and my hands are pretty much back to normal 4 months later.
I'm concerned as my neurologist really downplays covid saying that his many patients have very mild symptoms and while he does not say not to have vaccinations, he has said that they are not that important as COVID is very mild and the vaccination is not that efficacious!
He thinks my constant mask wearing is probably over cautious.
What are your thoughts on that?
The new variants are definitely milder and less likely to cause severe disease and long-COVID. However, there is still a small chance of getting severe disease. Please note this is on the backdrop of increasing herd immunity so we need to be thankful for the vaccines and boosters for helping.
It is still best to avoid getting an infection if you can so being cautious makes sense.
Thank you for replying. Is the increasing concern about vaccination side effects still unwarranted? Originally it was all anti-vaxers but now some medics are concerned about issues relating to the covid vaccination. For example, in relation to the heart.
My neuro says similar. I do not agree with him.
It sounds like your neurologist is not very supportive. Even if vaccinations were only weakly efficient--which is not true--at least SOMETHING is better than nothing. Even though that might not be so with every condition, in the case of Covid in general it certainly is. And if a mask makes you feel safer, then you should be supported gladly. Pardon my profanity... but, screw the naysayers and the people with the disdainful looks! You have every right to be as protected as you can (although driving down the street in a tank might be a little much). Also, if I hear one more anti-vaxxer call a mask a "face diaper," I will put their name and address on every list I can find soliciting home visits: encyclopedia sellers, census takers, Jehovah's witnesses, etc! Unless it is harmful or contraindicated (or illegal), your doctor should always be your advocate.
I've had covid twice and in both cases it was mild, probably because I have had all the vaccinations. I have accessed the antivirals each time, although in the second case (not diagnosed for a good few days) I suspect it was too late to make a difference anyway. In view of your comments, should I get antivirals regardless of whether I feel they are necessary? It's something of a procedure to access them, particularly as I travel frequently.
The point of antivirals is to prevent severe infection. When you start off with an infection you have no idea how severe it is going to be, which is why I recommend that all 'vulnerable' patients try and access antivirals if they have COVID-19.
“I have noted that many of my patients with low levels of disability have been complaining of not getting back to their premorbid or pre-COVID-19 baseline. Why?”
My initial impression of the question, without going through comments yet- Once you have Covid, you are going to pay more attention to your symptoms than you otherwise would. Worsening would have happened anyway, but you wouldn’t have been paying as much attention so you wouldn’t have noticed it. Or, you hadn’t noticed something before, but you are paying closer attention now. At the same time, people with severe Covid and some comorbidities show clear biological damage. So statistically, isn’t that a double whammy? Noteworthy also, how healthy were the healthy controls? We didn’t get to look at their brains after covid. How many of them got sick but still keep it a secret?
Avoid crowded places. Wear N95 masks. Step back from others in lines. Breath lightly or not at all; walk away, around coughers. I’ve been fully vaxxed all along and have yet to contract it. My wife wears the mask, working in a public setting, and has not contracted it either. We live in denial land Pennsylvania USA as well.
Poor communication on this- people never should have been led to believe that vaccines would STOP transmission. Should have been told the truth that only N95 masks can offer reliable protection. As time goes on, we forget the million+ who died and forget that they all caught it from someone else. I am happy to have used caution and still do. Why take the chance? Whatever the truth, “it was China’s fault” (as if that makes some kind of a difference).
I really like your suggestion to "breathe lightly or not at all," although it may be difficult to 'not' breathe for any extended length of time.
You get the point, I think. Move away, get out of line and go somewhere else, breath lightly and from a different direction if you have to stay. Obviously you can't stop breathing, but if someone is coughing vigorously, you want to avoid it. Some people just don't give a damn.
Yes, being cautious makes sense.
Hi, professor G. My question is: I had Covid in December 2023, mild to severe cold-like symptoms, no antivirals or antibiotics, not bed-bound, felt substantially better after 6 days. Still, in day 10, even though my symptoms were 90% gone (only some cough left), I was still testing positive. I talked to an infectious doctor who said the reason must be my DMT: Kesimpta, and that it would take a while for my body to eliminate the virus. I have not had a test after that, because I was sure that if it were still positive, I would freak out. I did not have a Covid rebound and did not have an MS flare.
My concern is: was I still contagious on day 10, in my particular case? And are pwMS contagious longer than people who do not have MS, in general? Thanks for taking the time to answer.
P.S. my last booster was in October 2021, so a long long time ago. (We dont have the latest booster in my country)
Being infected with a new variant acts as a booster and may provide better immunity that the existing boosters that are usually behind the current strains.
Yes, you may still be contagious. The immunosuppressed who can't clear the virus are the breeding ground for new variants. There are some examples in the literature of bone marrow transplant and HIV-AIDS patients shedding infectious virus for months.
Thank you for your answer!
So, when I no longer test positive, that means I have cleared the virus and I am no longer contagious?
Yes, and maybe sooner. The PCR tests remain positive for several days after you become non-infectious. The story is different with lateral flow test in that they are detecting protein and not nucleic acids. You have to assume that you are infectious if your lateral flow test is positive. However, as viral loads fall you become less infectious.
Yes, it means you’re shedding too little virus for it to be seen on the test so you are at low risk of spreading it.
How do we convince medical world this is long covid not natural disease progression? Does it matter?
The only way to convince them is that worsening post-COVID-19 is more common than with other viruses and is associated with evidence of end-organ CNS tissue damage using biomarkers (MRI, NFL levels, etc...).
Thank you. Will try that. Feel like everything at GP is put down to MS and everything with CNS is directed back to GP as not MS related
Covid is known to reactivate EBV. As EBV is linked to MS, it is possible that the reactivated EBV causes MS worsening. I suspect there will be an increase in MS cases worldwide over the next 5 years.
Yes, you may be right. But let's hope by then an EBV vaccine will be licensed to prevent EBV-related diseases.
That will be interesting to see. Interestingly may neurologist posited that my covid vaccination might have reactivated EBV. Soon after vaccination I began having very intense neuropathy in my lips chin and hands. That lasted 14 months happening a few times a week. 5 months after vaccination I underwent MRIs for potential back surgery, that showed cervical spinal cord lesions. A couple of months after that I had a diagnosis of MS. Prior to vaccination I had no health issues. Since vaccination I have an MS diagnosis and a large thyroid nodule. If the vaccines flood the body with spike protein, much like the virus itself does I understand why my neurologist thinks it's possible.
See my post below on Paxlovid effect on EBV in MS, Long Covid and primary EBV.
I am very interested to find out also thank you
To quote Gavin from a post further down “Please note that COVID-19 vaccination does not cause MS. MS has a prodromal phase that is years, potentially up to a decade. So if you develop MS now it was caused by environmental exposures many years ago.”
I look at it as the trigger. No doubt I was already inflamed. Since diagnosis I've learned I'm gluten intolerant for example. I've completely changed how I eat and the differences are remarkable. The timing is interesting to say the least. I think a genetic predisposition may be at play as well. I have one sister who had pain and neuropathy within minutes of her first and only jab, that hasn't subsided and she had a recent diagnosis of fibromyalgia. Her rheumatologist has begun an investigation if lupus now. My other sister got her cycle back after having been through menopause, when that regulated itself shingles set in. My oldest son, 24 at the time, had a racing heart for a couple of days after jab 2, he's a triathlete, that's before they made the myocarditis connection. Our father had a stroke a month after his second jab. Correlation is not causation but wow we've had an interesting experience.
See my post below on Paxlovid effect on EBV in MS, Long Covid and primary EBV.
I caught Covid in hospital, having second half dose of Ocrevus. I was put on 5 days of Paxlovid. I then had Paxlovid rebound and was extremely ill for a further 5 weeks. It made zero difference to my MS at the time. However, there do need to be further trials of anti/retro virals for MS.
Yes the Paxlovid doesn't improve MS symptoms in everyone who gets it. But we do need to find out why it does for some, to better understand the role of antiviral therapy in MS. In addition to EBV, there are other pathogens, such as VZV, HSV-1,2 HHV-6, CMV, and Lyme that contribute too.
I'm on Siponimod and have had covid twice, in the past 2 years. Both times very mild. Both times, it worsened my symptoms for 3 days, but got better after less than a week. My partner who is fit and healthy was worse than me!! Both times were at the time of being about to be vaccinated, so as a result I have only had the very first 3 vaccinés. My neurologist thinks I have a very strong base immunity. I was a teacher for 35 years and was never ill .I'm very thankful!
..
We're all unique but I relate to your case some what. I had covic before the pfizer (which I received twice, then later I got covid again. Both times I had covid (pre and post vaccinations) was mild and gone in about 1 week. The vaccinations made me feel terrible for 1-2 days and vomited harshly both times . So my experience makes me consider not taking HSCT clinics advice to get vaxxed
I was totally OK after the vaccination but I didn't renew as at the time I had the antibodies from covid.
Prof G, Paxlovid 5-day course is causing temporary remission of symptoms in MS, primary EBV, and Long Covid. Here are reports from patients with these EBV-associated diseases. With information on the the RECOVER-VITAL trial of Paxlovid for Long Covid and everything I could find on cross-disease collaboration on EBV. I hope this adds new info on treating EBV. And would it be possible to combine Tenofovir with Paxlovid, like the combos they do for HIV?
https://bit.ly/PaxlovidEBV
Paxlovid is a difficult drug to use because of its drug interactions.
In the Paxlovid profile I noted the RECOVER-VITAL trial of Paxlovid for Long covid missed an opportunity to measure if Paxlovid is affecting EBV, since they aren't testing for changes in EBV. So we won't get the answer there.
Is anyone investigating how to make an effective dose of TAF to kill EBV in MS before it goes into a human trial? It would be a bummer to do a trial and find out years later the dose isn't right. Cell-assay tests could reveal the effect of Paxlovid on EBV, or effect of Paxlovid plus TAF, or effect of AVR plus an HDAC inhibitor. Then a short human biomarker trial to test safety and efficacy against EBV. Harvard has approached Tenofovir for EBV in MS with this approach, that's why it seems logical to extend it to these other agents that are showing an effect on EBV. before the longer-term efficacy trials.
Histone deacetylase inhibitors (HDACi) are used for better eradication of EBV in cancer. EBV lytic reactivation from latency is induced using HDACi so that the virus can be killed by other agents like chemo. But there are papers on nontoxic agents like curcumin, quercetin, and sodium butyrate that are also HDAC inhibitors for EBV, which could make it easier for TAF to eradicate EBV.
EBV also produces latent member protein 1 (LMP1), which can promote the survival and immortalization of B cells. EBV-infected B cells are involved in presenting antigenic peptides to T cells, so mitigating EBV would also calm down inflammatory T cells. Quercetin and curcumin can prevent EBV-driven B cell immortalization which leads to cancer, so could it do this in MS? Both of these flavonoids also have studies showing benefits for MS since they promote autophagy, are anti-oxidative, anti-inflammatory and Quercetin has remyelination potential. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10638059/
In your most recent editorial, it was great to see there are 7 case studies of MS remission due to Tenofovir Alafenamide reducing EBV in MS. A mention was made that TAF 25 mg dose may not be strong enough for EBV. Are there other drugs that could be added to make it more effective? Ritonavir in Paxlovid is meant to boost other drugs, but it doesn't do that with TAF, according to https://www.covid19-druginteractions.org/checker
Coadministration has not been studied but based on metabolism and clearance a clinically significant interaction is unlikely. Tenofovir alafenamide is metabolized to tenofovir (major metabolite) by carboxylesterase-1 and cathepsin. Nirmatrelvir/ritonavir is metabolized by CYP3A. Tenofovir alafenamide neither induces nor inhibits CYPs.
⬆️ This! That document is very thorough and her question is on point. Based on studies and real-world experiences, would a combination of tenofovir and Paxlovid have an effect on the EBV viral load? I think this combo hasn’t been formally studied but what are your off-the-cuff thoughts, Prof. G.?
FYI-many MS sufferers have contacted Pfizer re Paxlovid’s effect on easing MS symptoms but obviously, the 5 day course is too short. At the time, Pfizer claimed to have not known this. Their number is 800-879-3477. If other pwMS found that Paxlovid eased MS symptoms, they need to tell Pfizer.
We will need a lot more data before taking Paxlovid forward in MS.
I felt great on Paxlovid!! My neurologist didn’t know why. Thanks for sharing this
I had bad pneumonia due to covid,and it took 2 months and 8 different antibiotics until I was cured. This was 2 years ago. I’ve been getting worse day by day since I finished with antibiotics. Getting worse started AFTER I was pneumonia-free, not during the infection. I was edss 1, was 3 in October, now I’m probably 4. Bladder is a mess (frequency,urgency, hesitancy, retention), and now I walk with a limp and can walk for 500m before resting. I’ve been on rituximab/Ocrevus since 2018,with no changes on MRI. I will probably get siponimod these days because I have frequent UTIs and doctors say I’m progressing to SPMS. I don’t know what the future holds. Will this progression stop at least, I’m not having hope I can get better but at least the progression might stop :-(
My very first symptom of MS- optic neuritis, started just a few weeks after the Covid infection.
This could be a coincidence. The data suggesting COVID-19 triggers or causes MS is very poor. MS in fact one of the outliers compared to other autoimmune diseases.
Please also specifically share the recent results that show vaccination protects against long covid - and that more vaccinations are better
this is REALLY important for those of us more vulnerable
else ppl may see one persons report that vax made them worse - and not take vax.
the vax may - i suspect - last less long for those of us on dmt
but, just like flu, we need tailored topups
https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(23)00414-9/fulltext?utm_source=substack&utm_medium=email
souced from eric topols substack: https://erictopol.substack.com/p/lighting-up-long-covid?utm_source=post-email-title&publication_id=587835&post_id=140823975&utm_campaign=email-post-title&isFreemail=true&r=7z1xa&utm_medium=email
I feel very lucky to have bounced back quickly from my two bouts of Covid, with no MS symptoms apparent.
However I did have a pseudo relapse for the first time last year when I had a cold - I thought there was some tingling in my fingers. Then not long after that I got norovirus on holiday in Morocco and had tingly fingers for weeks. Hated it. It made me realise how lucky I am not to have a constant reminder of my MS in ongoing symptoms. Of course I take my medication, but I've redoubled my efforts to maintain a healthy lifestyle too (not always easy in a new high-pressure role at work)
Sarah - I cannot encourage you enough to care for yourself as much as your job. I had a high pressure job(s) that I was good at and loved and MS that was pretty invisible until about 15 years in. I wish I had spent more time taking time to eat intelligently, relax fully, and take on a tai chi or yoga practice.
My very best wishes to you!
I had Covid in August of 2022 and called my Dr for Paxlovid which she prescribed. It stopped my fatigue and spasticity, I was so happy and when I went back to my Dr for follow up..I told her and of course she couldn’t prescribe anymore. I recently contacted Pfizer and asked if other people with MS had told them of positive results, they said no but wanted to know all about my symptom improvement.
Same! Felt great on it. Covid Rebound was a rude return to reality
As far as I know, I haven't gotten Covid yet. I've had all my jabs and boosters, and I'm very careful and wear a mask almost always. Getting Covid is not something I'm very worried about, but my partner is. My life has been so horrible, I have too much else to deal with. I'm still trying to live with what the NHS did to me, and how long it took to get any help for my MS.
In early 2020 my family suspected we were early undiagnosed Covid cases. Daughter was working for BA had been in China. She got sick, I got sick and her close friend. At that point the government were dilly dallying. I was on antibiotics for some time and had the worse cough. It was worse than whooping cough, had as a child. By April I slowly picked up but GP referred me to S&L. Had to have a phone consult as all staff were then on the wards. Had all the vacs and 2 more diagnosed Covid infections. Tried to get anti virals but system was useless. More antibiotics. What’s deteriorated most is my asthma. And cognition. So mentally drained very quickly. Reading a book is harder and harder. I tend to stick with short article reads. I miss reading a good book. Trouble is I’ve forgotten what it’s about if I leave it 4-5 days.
After the first vaccination I could not ‘run’ anymore and I’m still out of breath. So the vaccine made me ill. So aren't people with MS better off by taking enough vitamin D3 (with K2) instead?