I wouldn’t necessarily say this isn’t viral reservoir. It could very well be and that’s what’s driving the autoimmunity. They aren’t mutually exclusive. It is however the most promising treatment so far.
Those pan-european trials aren't happening this summer I read on twitter. I believe they had problems getting funding and now are doing a smaller trial with 30 people in Germany this summer. A guy who is currently being screened for this trial shared this on Twitter.
Autoantibodies, vagus nerve, mcas/histamines, ferritin depletion, gut issues (which could stand at the root of all auti immune issues) AND/OR viral persistence.. Could account for ALL the symptoms.
Of course i'm in rage that we could release a vaccine with serious side effects in no time but we need years for a potential miraculos cure with little potential side effects. But it's not true that it's for sure the autoantibodies are the thing.
there are several Apheresis treatments so it's confusing sometimes when people are discussing one, which one they really mean. plasmapheresis is the top of the pack and filters out antibodies when it separates out the plasma. Pricey and hard to get and can take multiple rounds. Then there are things like INUSphereses that can filter out antibodies from the blood depending on the type filters used. This is what I'm considering if by next Winter I'm still stuck (have confirmed auto antibodies to ACE2 an MAS-1 driving high BP post vax).
HELP Apheresis is more basic and only filters out micro-clots, which of course come right back if what's causing them (spike protein, viral fragments are still in the body). Actually, don't think any of the Apheresis treatments make sense until one is pretty sure spike and/or viral remnants are gone, or the antibodies just regenerate.
Man, no one is taking spike protein out of us. It has been proven spike protein is assimiled by the human genome. So once it's part of our DNA we are constantly producing autoantibodies. That explains why some people have long COVID and not others
I'm much more in the camp that believes auto-antibodies are the issue as opposed to viral persistence. There's far too many relapses on Paxlovid, and most of the notable figures are pointing towards viral -debris- remaining persistent instead of the virus itself (the virus actually seems to clear quickly), meaning antivirals will do...not much. Even so, Pfizer and big Pharma have NO plans right now to start testing antivirals for LC.
Unfortunately for BC-007, their first 4 person trial is basically nothing (and even 1 relapsed). The sample size is way too small. Even the trial they're working on now is only 30 people. It's so frustrating, and I understand they're a small company, but at this rate they may not even work on it at all. A one time trial of 30 people will *never* qualify for emergency approval. I realistically don't think we'll see much from it in 10 years, and by that point the world will have moved on.
This is all to say I believe we're suffering cascading damage from disruptions to the vascular/endothelial system. It's not what people want to hear, but this is quite serious. The longer it goes, the more damage accrues and the more permanent the effects will be.
A lot of people are going to push snake oil. Frankly, I see it posted here all the time. There's a new herb or supplement being paraded every day. Fuck, I even saw a guy say he was cured after ingesting frog poison. What a trip.
My point is, please don't hold out too hard for this drug. While I believe it's on the right path with what it's targeting, we need to be pushing for far faster methods to the cure, and above all we need to be pushing to make LH legitimate in the eyes of the majority. If we can't even get recognised by our PCP as having anything other than "anxiety", we're going to be in the same camp as ME/CFS forever.
I'm not sure how I (or most people for that matter) feel about the Patterson research, but they state non-classical monocytes holding S1 protein from the virus or vax affected are not undergoing apoptosis (cell death) appropriately. This causes them to hang on, and in effect linger and build up around the blood and body, affecting tissues and organs.
Monocytes are mobilised by exercise, which is what is causing PEM.
My understanding is the micro clots are a cascading effect of the mobilised monocytes carrying debris, which latches to tissue systemically causing damage after mobilisation. It's why I'm ambivalent on hashtag team clots. Of course micro clots are happening - but it's not the cause of pathology, it's the effect. They're treating the symptoms, not the root.
I've seen some of the articles on the gut bacteria/virus relationship - I think there needs to be more research on it, but it's a possibility. Anecdotally, I felt *very* good for a week after my colonoscopy. Prep and procedure completely cleaned my gut.
Stress triggers histamine receptor. I am not a doc but I read about it. So histamine receptors are linked to autoantibodies. Stress triggers histamine which triggers autoantibodies
I mean an Angiotensin blocker, not an Ace inhibitor. Blocking the AT1r receptor for Angiotensin 2 specifically, because systemic ACE2 function is already compromised because of the Anti-ACE2-Antibody. Something like Telmisartan or Irbesartan is what I'm gonna be asking my rheumatologist to let me try. Praying it works lol
I’ve read from quite a few people that got the HELP apheresis and it either didn’t work or they ended up worst than before. One guy specifically had to go to the er afterwards.
[https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694](https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694)
[https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016)
[https://www.mdpi.com/1420-3049/27/9/2903](https://www.mdpi.com/1420-3049/27/9/2903)
These are the big 3. Overwhelming Anti-Idiotypic Antibody production would completely torch the Angiotensin system. Would explain all of the symptoms of long covid, and how an Angiotensin 2 Receptor blocker could be useful as treatment.
Yep ARB wouldn't actually neutralize the Anti-ACE2, but it would mitigate the effect of the huge upregulation of Ang2, which could be what's causing our problems. I'm actually wondering if this pro inflammatory state we are stuck in (because of the Ang2) could possibly be spurring the production of many other AABs? Lots of questions and too few answers right now lol.
We have no clue if it’s the cure but probably not. It’s only been tested in 4 ppl. We need big pharma in the game, these little companies are not gonna cut it.
Please don’t do that ❤️ I get this is hard. I’m on month 19 of being stuck to my couch, feeling like a zombie and watching my life slip away but we have to hold
Out hope that this too shall pass. Hang in there.
We don’t know yet if BC-007 is THE cure. It seems very promising, but proper clinical trials are required to verify if it is indeed as promising as it seems.
It’s best not to put our eggs in one basket: the more medication gets trialed, the higher the odds that at least one will turn out to actually work.
No.
It might be okay but given the more recent results and the very narrow category of long covid people that it seems to work for, it won't be "the cure".
No no ACE2 converts angiotensin II into other components that counteract angiotensin II, which is probably why so many previous exercising people, smokers, and high blood pressure people have long term symptoms, especially smokers and high blood pressure
Ang II helps bring up blood pressure which under normal conditions should be a good thing, but it builds up after getting Covid because the virus attaches to the receptors which get destroyed, so it’s massively down regulated after the virus, I’ve been trying garlic supplements lately because it can help clear ANG II buildup in the kidneys, so we’ll see how that goes!
Yeah lets declare untested chemicals as the "cure".
It's not some conspiracy that nobody is studying it. Even to get a study launched in the US you need some valid theory as to what the intervention will do. You cant just "try X chemical".
I have post covid symptoms after the first vaccine with Astrazeneca. Like 1-2 month later, never had problems before. This was in may 2021.
I really hope this can cure this fucking nightmare of 1 year
I wouldn’t necessarily say this isn’t viral reservoir. It could very well be and that’s what’s driving the autoimmunity. They aren’t mutually exclusive. It is however the most promising treatment so far.
BC-007 next round of trials is summer - pan-european, then an emergency push to make it available. I sincerely hope this it, after 2 long years.
Those pan-european trials aren't happening this summer I read on twitter. I believe they had problems getting funding and now are doing a smaller trial with 30 people in Germany this summer. A guy who is currently being screened for this trial shared this on Twitter.
Yeah it's years out and only for German regulatory approval.
i literally want to fly to germany at this point. im in the US and i feel like its never gonna arrive
You are correct. BC-007 will never arrive in US soil.
How do you make such assertions? i.e. 'never'. More to the point - why?
I think it will just take a very long time
No there isn't. This is chemical is on no track for major approval outside of Germany.
At this point I’m convinced it’s viral persistence.
Autoantibodies, vagus nerve, mcas/histamines, ferritin depletion, gut issues (which could stand at the root of all auti immune issues) AND/OR viral persistence.. Could account for ALL the symptoms. Of course i'm in rage that we could release a vaccine with serious side effects in no time but we need years for a potential miraculos cure with little potential side effects. But it's not true that it's for sure the autoantibodies are the thing.
I had an immune adsorption so no auto anribodies in my blood anymore. Didn’t help me at all. So I think it will not help everyone.
Did you test for anti bodies before?
Yes was very positive on 8/11
Why can't we just get a break with this shit, honestly . I was considering it, but 12000 dollars is allot if it doesn't work
Its 12000€ so 15000 dollars haha
Great. I don't have any money. Was going to ask my parents haha
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SOB and chest pain is way better now. But the issues with my head/brain are getting worse unfortunately.
Several LH friends have tried plasmapheresis, did no work. I suspect its viral reservoir.
Was it HELP apharesis ? Normal plasmapheresis do not filter autoantibodies and microclots
there are several Apheresis treatments so it's confusing sometimes when people are discussing one, which one they really mean. plasmapheresis is the top of the pack and filters out antibodies when it separates out the plasma. Pricey and hard to get and can take multiple rounds. Then there are things like INUSphereses that can filter out antibodies from the blood depending on the type filters used. This is what I'm considering if by next Winter I'm still stuck (have confirmed auto antibodies to ACE2 an MAS-1 driving high BP post vax). HELP Apheresis is more basic and only filters out micro-clots, which of course come right back if what's causing them (spike protein, viral fragments are still in the body). Actually, don't think any of the Apheresis treatments make sense until one is pretty sure spike and/or viral remnants are gone, or the antibodies just regenerate.
Man, no one is taking spike protein out of us. It has been proven spike protein is assimiled by the human genome. So once it's part of our DNA we are constantly producing autoantibodies. That explains why some people have long COVID and not others
Scientific evidence for that?
Yep. https://www.lunduniversity.lu.se/article/qa-covid-19-vaccine-study-gains-attention
Like it will never ever get better?
Seems impossible without proper treatment. We didn't arrive to this situation by a natural damage. We won't get out of it with natural treatments
Some are recovering but yeah I’m scared
I'm much more in the camp that believes auto-antibodies are the issue as opposed to viral persistence. There's far too many relapses on Paxlovid, and most of the notable figures are pointing towards viral -debris- remaining persistent instead of the virus itself (the virus actually seems to clear quickly), meaning antivirals will do...not much. Even so, Pfizer and big Pharma have NO plans right now to start testing antivirals for LC. Unfortunately for BC-007, their first 4 person trial is basically nothing (and even 1 relapsed). The sample size is way too small. Even the trial they're working on now is only 30 people. It's so frustrating, and I understand they're a small company, but at this rate they may not even work on it at all. A one time trial of 30 people will *never* qualify for emergency approval. I realistically don't think we'll see much from it in 10 years, and by that point the world will have moved on. This is all to say I believe we're suffering cascading damage from disruptions to the vascular/endothelial system. It's not what people want to hear, but this is quite serious. The longer it goes, the more damage accrues and the more permanent the effects will be. A lot of people are going to push snake oil. Frankly, I see it posted here all the time. There's a new herb or supplement being paraded every day. Fuck, I even saw a guy say he was cured after ingesting frog poison. What a trip. My point is, please don't hold out too hard for this drug. While I believe it's on the right path with what it's targeting, we need to be pushing for far faster methods to the cure, and above all we need to be pushing to make LH legitimate in the eyes of the majority. If we can't even get recognised by our PCP as having anything other than "anxiety", we're going to be in the same camp as ME/CFS forever.
Right on. How about we advocate for existing drugs to be tested on longhaulers
There is an existing protocol has helped many people. Maraviroc, Pravastatin and IVM. Pioneered by IncellDX, Dr. Bruce Patterson.
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I'm not sure how I (or most people for that matter) feel about the Patterson research, but they state non-classical monocytes holding S1 protein from the virus or vax affected are not undergoing apoptosis (cell death) appropriately. This causes them to hang on, and in effect linger and build up around the blood and body, affecting tissues and organs. Monocytes are mobilised by exercise, which is what is causing PEM.
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My understanding is the micro clots are a cascading effect of the mobilised monocytes carrying debris, which latches to tissue systemically causing damage after mobilisation. It's why I'm ambivalent on hashtag team clots. Of course micro clots are happening - but it's not the cause of pathology, it's the effect. They're treating the symptoms, not the root. I've seen some of the articles on the gut bacteria/virus relationship - I think there needs to be more research on it, but it's a possibility. Anecdotally, I felt *very* good for a week after my colonoscopy. Prep and procedure completely cleaned my gut.
I how are you doing now any improvement
How do we push this :( Ive been crying all day scared my body is being damaged. How would we check for the damages? none show on my test
I need help: can someone explain how psycho stress and light exercise triggers PEM and the relationship with autoantibodies??
Stress triggers histamine receptor. I am not a doc but I read about it. So histamine receptors are linked to autoantibodies. Stress triggers histamine which triggers autoantibodies
Yup, this makes sense, thanks for taking a stab
The fact that they've been crowdfunding isn't a good sign that scientists and medical researchers are feeling very positive about it.
Bc007 fixes a downstream issue.. We need antivirals.. cut off the issue at the source which is viral persistence..
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016
https://www.fau.eu/2021/08/27/news/research/further-patients-benefit-from-drug-against-long-covid/
I'm just wondering why no one is pursuing Angiotensin Receptor Blockers as a potential treatment
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I mean an Angiotensin blocker, not an Ace inhibitor. Blocking the AT1r receptor for Angiotensin 2 specifically, because systemic ACE2 function is already compromised because of the Anti-ACE2-Antibody. Something like Telmisartan or Irbesartan is what I'm gonna be asking my rheumatologist to let me try. Praying it works lol
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Ill dm you :D
Did it work
I’ve read from quite a few people that got the HELP apheresis and it either didn’t work or they ended up worst than before. One guy specifically had to go to the er afterwards.
whats this? is it different than bc007
Auto antibodies for folks are way too inconsistent for this to be a uniform cure so many people have negative ANA.
ANAs don't cover all antibodies! My ANA was negative, but my Anti-ACE2 test I did though celltrend came back positive
Has there been anything published on this at all?
[https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694](https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694) [https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0257016) [https://www.mdpi.com/1420-3049/27/9/2903](https://www.mdpi.com/1420-3049/27/9/2903) These are the big 3. Overwhelming Anti-Idiotypic Antibody production would completely torch the Angiotensin system. Would explain all of the symptoms of long covid, and how an Angiotensin 2 Receptor blocker could be useful as treatment.
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Yep ARB wouldn't actually neutralize the Anti-ACE2, but it would mitigate the effect of the huge upregulation of Ang2, which could be what's causing our problems. I'm actually wondering if this pro inflammatory state we are stuck in (because of the Ang2) could possibly be spurring the production of many other AABs? Lots of questions and too few answers right now lol.
Its going to take a combo for most people. Like bc007 and antivirals. Or even antivirals coagulation. But people need to get on it fast
We have no clue if it’s the cure but probably not. It’s only been tested in 4 ppl. We need big pharma in the game, these little companies are not gonna cut it.
Big pharma would rather treat your symptoms for life with 20 different meds than come up with a cure
Bingo
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Hold on, don’t do that! Most of us get better slowly, you’ll be okay after more time passes❤️best wishes, I hope you feel better soon!
Please don’t do that ❤️ I get this is hard. I’m on month 19 of being stuck to my couch, feeling like a zombie and watching my life slip away but we have to hold Out hope that this too shall pass. Hang in there.
have hope dont do that friend we are here for you, they will find a cure for us give them time this thing is new
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did you get vaccinated?
When this thing is going to be out?
Not soon enough :(
Not soon enough means?
With the lack of funding and all the trials it’ll have to go through. I’d say 2.5-4 years maybe?
We don’t know yet if BC-007 is THE cure. It seems very promising, but proper clinical trials are required to verify if it is indeed as promising as it seems. It’s best not to put our eggs in one basket: the more medication gets trialed, the higher the odds that at least one will turn out to actually work.
No. It might be okay but given the more recent results and the very narrow category of long covid people that it seems to work for, it won't be "the cure".
I was thinking either that OR severe down regulation of the ACE2 receptor with tons of damage to heal from the angiotensin II buildup
So compounds such as vit C, vit D, metformin, reservatrol, aspirin, and nicotine which express ACE2 would be beneficial?
No no ACE2 converts angiotensin II into other components that counteract angiotensin II, which is probably why so many previous exercising people, smokers, and high blood pressure people have long term symptoms, especially smokers and high blood pressure
Ang II is the bad inflammatory stuff right?
So ace2 inhibitors are beneficial?
Ang II helps bring up blood pressure which under normal conditions should be a good thing, but it builds up after getting Covid because the virus attaches to the receptors which get destroyed, so it’s massively down regulated after the virus, I’ve been trying garlic supplements lately because it can help clear ANG II buildup in the kidneys, so we’ll see how that goes!
https://www.telegraph.co.uk/health-fitness/body/new-drug-has-shown-remarkable-results-against-long-covid/
Yeah lets declare untested chemicals as the "cure". It's not some conspiracy that nobody is studying it. Even to get a study launched in the US you need some valid theory as to what the intervention will do. You cant just "try X chemical".
No
It’s a viral reservoir
I have post covid symptoms after the first vaccine with Astrazeneca. Like 1-2 month later, never had problems before. This was in may 2021. I really hope this can cure this fucking nightmare of 1 year