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Temelimab
- Thread starter Jaybee00
- Start date
Mij
Senior Member (Voting Rights)
Translation:
Hello everyone,
As agreed, I'll give you a feedback at the time of my monthly injection. I measure my condition every day with a tracking chart of my symptoms for pacing .
I take this data to give you a cold feedback 1 month after each injection.
I'm also developing an application to simplify this process, it's still top secret but here's a link to learn more about the project and possibly support me.
Some reminders
→ My second injection was on December 15, 2022.
There is a 50% chance that I will receive a placebo!
On the other hand, I certainly have a problem of overproduction of HERV-ENV protein (10% to 20% of Covid Long) which destroys my brain in a similar way to MS (Multiple Sclerosis), and we are talking about it here for those who want to understand the biological & scientific aspect.
So thank you to the Covid! (no)
If you want to avoid going through hell like us the Covid Long: put on a mask (FFP2+).
If your doctor tells you that your post-viral symptoms are all in your head , dig deeper, it would be silly to let neurodegeneration set in without doing anything.
Because yes, in France nobody talks about it.
TL;DR The evolution of my condition
Long story short: I'm better.
Still not at 100% of my pre-covid form, I'm at 70%, before the treatment I was at 50%, and at the worst of my Covid Long I was at 10% (to give you an idea).
Is it chance? “Natural” Healing? The Covid Long “waves” that made me feel better several times only to dive back even more a few weeks later? Or indeed Temelimab? No idea, but don't take my experience for proof.
After the second injection of Temelimab…
As after the first injection, I had a perfect day after the infusion, about 24 to 36 hours of respite. But this time down more quickly to continue on a difficult week in terms of migraines and headaches, I took a little expensive and it calmed me down.
Vaccine
I had a Pfizer bivalent booster 5 days after my injection in December. It had no negative effects (apart from 1 day of numbness).
Pains
I mainly have head pain, a lot of headaches (more than the month before) and especially pain behind my eyes.
Let's say I don't do anything to avoid them either.
I don't drink as much as before (water eh) and as I talk about it below, I no longer restrict myself to a specific diet, nor take supplements (like Nattokinase or Butyrate).
Fatigue Side
In the past month I've only had one episode of fatigue strong enough to make me want to take a nap. Which ties in with my pre-covid life, where I sometimes needed to take a nap. So on this side, it's day and night compared to pre-November when it was at least twice a week (and I'm not talking about before August when it was almost every day).
I can work but still not 100%, not full days of intense focus, but 50-70% of the day on the best days.
The people around me notice it too, I can live an “almost” normal life as long as it is not too intense. I estimate that I can do 2 days in a row of “normal” social or intellectual activities, but 3 or 4 is still too much. I need recovery.
The next stronghold is intense physical activity.
Mental Side
I still have some mental fog, but it's lighter. Less pronounced and especially less often. It remains that it is always there 3 to 5 days a week.
On the Inflammation/histamine intolerance side.
These are the most mysterious symptoms for me, I still can't understand how they are triggered. Unlike my dysautonomia that I managed to correct ( we talk about it here ).
I haven't had histamine attacks as I call them since December 26 (inflammation, night sweats, chest pain, buzzing, and inability to sleep).
But from December 15 to 25 I had it several times a week. So the inflammation was there, and for the first time I felt the inflammation in the intestines.
Note that I no longer avoid foods high in histamine since the last injection, in my opinion inflammation also occurs when I am exhausted or very upset. Or conversely, is it the inflammation that tires me? What I do know is that this month inflammation has been strongly correlated to my upset and anxiety.
In my previous experiences I could cause seizures all the time by eating spinach for example, I had concluded that only the food was culprit. But in December, that was more my mood.
It may sound completely illogical and hazy, but that's what happens to me. I will be looking into this histamine topic more seriously soon.
Physical Activity
I resumed the “sport” in huge quotation marks, I do light abs, seated Yoga several times for 2 weeks as well as walking. So far I haven't had any consequences. I make sure not to exceed 110 BPM.
It's not pre-covid sport yet.
Hello everyone,
As agreed, I'll give you a feedback at the time of my monthly injection. I measure my condition every day with a tracking chart of my symptoms for pacing .
I take this data to give you a cold feedback 1 month after each injection.
I'm also developing an application to simplify this process, it's still top secret but here's a link to learn more about the project and possibly support me.
Some reminders
→ My second injection was on December 15, 2022.
There is a 50% chance that I will receive a placebo!
On the other hand, I certainly have a problem of overproduction of HERV-ENV protein (10% to 20% of Covid Long) which destroys my brain in a similar way to MS (Multiple Sclerosis), and we are talking about it here for those who want to understand the biological & scientific aspect.
So thank you to the Covid! (no)
If you want to avoid going through hell like us the Covid Long: put on a mask (FFP2+).
If your doctor tells you that your post-viral symptoms are all in your head , dig deeper, it would be silly to let neurodegeneration set in without doing anything.
Because yes, in France nobody talks about it.
TL;DR The evolution of my condition
Long story short: I'm better.
Still not at 100% of my pre-covid form, I'm at 70%, before the treatment I was at 50%, and at the worst of my Covid Long I was at 10% (to give you an idea).
Is it chance? “Natural” Healing? The Covid Long “waves” that made me feel better several times only to dive back even more a few weeks later? Or indeed Temelimab? No idea, but don't take my experience for proof.
After the second injection of Temelimab…
As after the first injection, I had a perfect day after the infusion, about 24 to 36 hours of respite. But this time down more quickly to continue on a difficult week in terms of migraines and headaches, I took a little expensive and it calmed me down.
Vaccine
I had a Pfizer bivalent booster 5 days after my injection in December. It had no negative effects (apart from 1 day of numbness).
Pains
I mainly have head pain, a lot of headaches (more than the month before) and especially pain behind my eyes.
Let's say I don't do anything to avoid them either.
I don't drink as much as before (water eh) and as I talk about it below, I no longer restrict myself to a specific diet, nor take supplements (like Nattokinase or Butyrate).
Fatigue Side
In the past month I've only had one episode of fatigue strong enough to make me want to take a nap. Which ties in with my pre-covid life, where I sometimes needed to take a nap. So on this side, it's day and night compared to pre-November when it was at least twice a week (and I'm not talking about before August when it was almost every day).
I can work but still not 100%, not full days of intense focus, but 50-70% of the day on the best days.
The people around me notice it too, I can live an “almost” normal life as long as it is not too intense. I estimate that I can do 2 days in a row of “normal” social or intellectual activities, but 3 or 4 is still too much. I need recovery.
The next stronghold is intense physical activity.
Mental Side
I still have some mental fog, but it's lighter. Less pronounced and especially less often. It remains that it is always there 3 to 5 days a week.
On the Inflammation/histamine intolerance side.
These are the most mysterious symptoms for me, I still can't understand how they are triggered. Unlike my dysautonomia that I managed to correct ( we talk about it here ).
I haven't had histamine attacks as I call them since December 26 (inflammation, night sweats, chest pain, buzzing, and inability to sleep).
But from December 15 to 25 I had it several times a week. So the inflammation was there, and for the first time I felt the inflammation in the intestines.
Note that I no longer avoid foods high in histamine since the last injection, in my opinion inflammation also occurs when I am exhausted or very upset. Or conversely, is it the inflammation that tires me? What I do know is that this month inflammation has been strongly correlated to my upset and anxiety.
In my previous experiences I could cause seizures all the time by eating spinach for example, I had concluded that only the food was culprit. But in December, that was more my mood.
It may sound completely illogical and hazy, but that's what happens to me. I will be looking into this histamine topic more seriously soon.
Physical Activity
I resumed the “sport” in huge quotation marks, I do light abs, seated Yoga several times for 2 weeks as well as walking. So far I haven't had any consequences. I make sure not to exceed 110 BPM.
It's not pre-covid sport yet.
Last edited by a moderator:
Temelimab is GNbAC1 and is a monoclonal Ab against HERV-W envelope glycoprotein.
See —
Temelimab, an IgG4 Anti-Human Endogenous Retrovirus Monoclonal Antibody: An Early Development Safety Review (2020, Kornmann and Curtin)
Evidence of the pathogenic HERV-W envelope expression in T lymphocytes in association with the respiratory outcome of COVID-19 patients (2021, Balestieri et al)
with commentary in HERV-W envelope expression in blood leukocytes as a marker of disease severity of COVID-19 (2021, Nath) —
See —
Temelimab, an IgG4 Anti-Human Endogenous Retrovirus Monoclonal Antibody: An Early Development Safety Review (2020, Kornmann and Curtin)
Evidence of the pathogenic HERV-W envelope expression in T lymphocytes in association with the respiratory outcome of COVID-19 patients (2021, Balestieri et al)
with commentary in HERV-W envelope expression in blood leukocytes as a marker of disease severity of COVID-19 (2021, Nath) —
See also the thread for Resurrection of endogenous retroviruses during aging reinforces senescence (2023, Cell)
I find the HERV reactivation hypothesis very interesting, but, for what it's worth, here are the results of extraction of RNA from peripheral blood mononuclear cells from 25 people with severe ME/CFS, 75 people with moderate ME/CFS and 70 healthy controls (ME/CFS samples from theUK ME/CFS Biobank, so, well characterised).
HERV-K and HERV-W transcriptional activity in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Rodrigues et al. 2019
B. HERV-W
Differences in HERV-K were fairly underwhelming too. I wonder though whether testing serum (where the HERV particles would be released upon reactivation) would be a better measure of activation than testing blood cells?
HERV-K and HERV-W transcriptional activity in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Rodrigues et al. 2019
B. HERV-W
Differences in HERV-K were fairly underwhelming too. I wonder though whether testing serum (where the HERV particles would be released upon reactivation) would be a better measure of activation than testing blood cells?
rvallee
Senior Member (Voting Rights)
It really needs to be emphasized how important pharmaceutical profit-seeking will be for us. Oddly enough.
One common issue with developing drugs that cure conditions is that it's terrible for business. Businesses are all about regular, stable cash flow. Making a boatload of money that then stops isn't a good business plan.
But for chronic illness the model is completely different because it never stops being created in large numbers. Even for those who would only be ill for months, it will be worth it. No one can tell who that will be, and cutting down massively disruptive illness is worth almost any price.
There will be people suffering from chronic illness after infections, by the millions, for as long as infectious illnesses are common. Millions of patients every single year. There would be an initial bump for the millions of us long-timers, but that still leaves millions of customers every single year, regular, stable income. Medicine is ironically making everything they can do to maximize this. Oddly enough.
It's basically a perfect fit for the pharma model: it's a cure in a large population that gets constantly renewed. Even if it's just effective treatment and not a cure, if it's effective enough, it will allow us to do the work we can't do right now, so it still works out.
RedFox
Senior Member (Voting Rights)
The first ME drug is likely to be a treatment rather than a cure. With no competing treatments, the inventor will be able to demand exorbitant prices until the patent expires.
https://metacovidlong.substack.com/p/temelimab-4
Fourth treatment. Sounds not so great. Maybe he has the placebo?
Fourth treatment. Sounds not so great. Maybe he has the placebo?
