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.
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.
โI 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?โ
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 wouldnโt have been paying as much attention so you wouldnโt have noticed it. Or, you hadnโt 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, isnโt that a double whammy? Noteworthy also, how healthy were the healthy controls? We didnโt 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. Iโve 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, โit was Chinaโs faultโ (as if that makes some kind of a difference).
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.
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.
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 vaccinรฉs. 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!
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?
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. Iโve 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 Iโm probably 4. Bladder is a mess (frequency,urgency, hesitancy, retention), and now I walk with a limp and can walk for 500m before resting. Iโve 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 Iโm progressing to SPMS. I donโt know what the future holds. Will this progression stop at least, Iโm not having hope I can get better but at least the progression might stop :-(
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)
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 couldnโt 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. Whatโs 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 Iโve forgotten what itโs about if I leave it 4-5 days.
After the first vaccination I could not โrunโ anymore and Iโm 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?
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.
โI 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?โ
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 wouldnโt have been paying as much attention so you wouldnโt have noticed it. Or, you hadnโt 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, isnโt that a double whammy? Noteworthy also, how healthy were the healthy controls? We didnโt 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. Iโve 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, โit was Chinaโs faultโ (as if that makes some kind of a difference).
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.
How do we convince medical world this is long covid not natural disease progression? Does it matter?
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.
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 vaccinรฉs. 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!
..
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
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. Iโve 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 Iโm probably 4. Bladder is a mess (frequency,urgency, hesitancy, retention), and now I walk with a limp and can walk for 500m before resting. Iโve 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 Iโm progressing to SPMS. I donโt know what the future holds. Will this progression stop at least, Iโm 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.
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)
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 couldnโt 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. Whatโs 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 Iโve forgotten what itโs about if I leave it 4-5 days.
After the first vaccination I could not โrunโ anymore and Iโm 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?