BC007 anecdotes so far (not the silver bullet that we're looking for)

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BC 007 is an experimental aptamer drug that tries to stop autoimmunity against G-protein coupled receptors.

Some patients got this drug custom-made for them because they’re a little crazy. Anecdotes from them suggest that BC007 is not the answer for Long COVID, though I haven’t spent much time looking into it.

Clinical trial participant’s anecdote - doesn’t know if he/she got placebo

Yo Longhaulers

I got the permission from Ingo, a dude currently participating in the BC007 to share his story. There is no NDA for the participants and his news are on facebook in an 10.000+ member group and on Twitter anyways so yeah i decided to post it here for you also. Translated it from german so i am sorry if there are some mistakes in the text.

Please be careful we still don’t know if he got the drug or placebo.

Ingos Timeline

Update 19:45: I don’t notice anything. The action was exhausting. Stayed in the clinic from 08:00 to 17:00. Since that’s been asked:

  • My infection was in July 2022. PCR positive on 10. 07. 22
  • Facit-F score was at 19 points
  • PEM, POTS, brainfog, cognitive problems, irritability
  • The second infusion follows 14 days after the first.
  • The placebo is given in the same way as the medicine. The study is double-blind. Neither the attending physicians nor the subject know what is being administered. The size of the dose is probably the only thing you can see, since they have two different throughput times.
  • I had the small dose. Small is 1350 mg at 75 minutes cycle time. The other is 1900 mg at 105 minutes run time. There is a placebo for both run times.
  • The following tests were done before, which are sometimes repeated several times: recumbent ECG, which is continued at some point in a standing position, including blood pressure, pulse and blood oxygen, blood values, urine, walking test, Facit-F.
  • The number of steps I take per day: more on good days, less on bad days. On average in June 3900, there was also a zoo visit with over 9000 steps, which was the absolute torture for me. May 3400, not a day over 6,000. April 4169? What the hell was I doing? A few days with 8000-9000 steps. In February and March there were more, those were my harmful “training months”.
  • The Bell Score: I would have placed it somewhere between 40 and 30 on good days. On bad correspondingly worse.
  • I will try to add more here, if it seems useful to me and I have the opportunity to do so.

06.07. More than 24 hours after the infusion no significant change in my condition was noticeable. But this does not worry me, because I give the body time to repair the many damages caused by the circulatory disorders and small fiber neuropathy. This can’t go away overnight, it happened over weeks and months. There will also be a reason for giving a second portion after 2 weeks.

07.07. There’s an examination at the clinic this afternoon. I’m curious if I did better in the walking test, which went surprisingly well on Wednesday and if they tell me that. I forgot to ask about the walk test. Was distracted by the fact that no lactate was measured after the test today, somehow. Aloud I was a fitness tracker in the first minutes with 120 Pulse on the way, which then after reducing the speed did not want to be below 90. Worse than Wednesday, but it was also late in the day, I was still sober and I went by car myself. Otherwise only a little under 2 hours stay. The doctors were already astonishingly curious to know if I could feel any changes. Tonight during the walk the pulse was about 300 Meters again over 100.

10.07. This morning for the first time two days in a row had a score of 5 at visible. I always double-measure when I don’t believe the value. Picture as comment below. Saturday had a long evening at an event where I was standing almost the whole time. Last night during the walk high pulse after a longer distance than usual, which also calmed down faster. All at a more normal, faster, pace than before. Expected crash has not yet occurred. I wonder how strong a placebo effect can be or how well this drug works. If you need something to cheer up, maybe a video I made today on the way back from Münster in the car wash might be useful. The video’s in my profile. Sound may be muted in case of noise sensitivity.

    1. It’s been quiet for a few days, but today’s the hammer. On Monday I scrubbed the top of my Twingo after the car wash. In hindsight, I noticed that I tolerated the ride in the noisy car better than usual. There was no more torture, as in the weeks and months before. During the day, I had a suspicion that I had received the drug and not a placebo. Because I’ve never had such improvements in my condition. Climbing the stairs was also surprisingly better. I carried a 30 liter water canister out of the cellar and when I was upstairs I noticed that this feeling of emptiness in my legs was suddenly missing. I deliberately spared myself again on Monday. Canopy cleaning alone with many circular movements at shoulder level. Crash test Later I went shopping briefly in the village and after dinner the walk was also better than before. The high pulse came back, but later and at a higher walking speed than before. But he went back faster than before. The distance was also longer. At the end of the day, I had over 9,000 Steps.

Tuesday Visible showed me with a score of 3 in the morning that I had probably exaggerated on the previous days. I was a little tired, but that was nothing compared to before. Just like before the illness after a hard day. No crash. I took it a little easier.

Today Visible showed a value of 4 with morning. In the early afternoon I went to the doctor in Münster. I chose a car that I could not use in the last few months and therefore wanted to sell. Suspension too hard, seats too hard, clutch too heavy, etc. The ride was a pleasure. The doctor was able to observe an astonishing improvement of blood circulation in the legs. Not good yet but much better than in May. In the months before, there was hardly any change to be noted. This improvement in blood flow could explain the change in my condition. It is not yet possible to conclude with certainty on the content of the infusion. Regardless of this, I am delighted that I have not imagined the improvement, but can be explained measurably.

13.07. Visible showed the value 4 in the morning. During the day I did nothing particularly strenuous, but rather spared, like the last few months. Been invited to the neighbors in the evening. Long standing still hurts, sitting on hard beer benches as well. I also tolerate temperatures of 17-18° C comparatively poorly, had to get warmer clothes in between and found the temperature uncomfortable anyway. By the way, with the few tests on the stairs, I actually managed to get a muscle ache in my calves and thighs. It’s terrifying how the body has degraded over time. I described the development of the past week in conversation with neighbors as a rejuvenation of the perceived age from 95 to about 70-75 years.

14.07. This morning Visible showed a value of five times to see what the day brings.

18.07. So, brief feedback on the past few days. Visible always showed fair values in the morning, 4 and 5. Behind me is a Schützenfest weekend, which lasted until Monday evening. There was no significant improvement. That’s why I made it through the party without crashing. Of course, I kept quiet, so I didn’t drink, I didn’t go with the processions and I only danced very little during the party to keep my heart rate down, and I made sure that I stayed in well-ventilated areas of the tent as much as possible. The loud music in the tent and the many conversations didn’t matter to me, which I would have thought was impossible a few weeks ago, was quite bearable for me. The many standing or sitting on hard beer benches was still very uncomfortable. My condition appears to be stable at the moment.

https://www.reddit.com/r/covidlonghaulers/comments/15z1i0x/bc007_a_trial_participants_story/

More anecdotes from this Reddit thread:

However, in this podcast from Summer 2022, Dr. Hohberger says the one patient who was in a wheelchair from the treatment only recovered part way. That said, the interview was given during the trial, so it’s possible she continued to improve after.

Mclovin4333:

Berlin Cures is a startup and wants to attract investors. They are not honest about what actually happened. The 2 patients that fully recovered both relapsed. One had covid again. The other was healthy for 3 months and then had a huge crash. He talked about it on a documentary.

Rätsel Long COVID - Der lange Weg zur Heilung - 3sat-Mediathek (34:50 - its in german)

mlukeuk:

I actually reached out to one of the original cohort. He was recovered for a while but then got COVID again and deteriorated. I’m not sure how he’s doing now.

CORRECTION: The Twitter account below posted a survey of BC007 results but that account has since taken down its tweet.


from the twitter thread at https://twitter.com/PostVFoundation/status/1737810932737167547

via Google translate

Current news about BC007

  1. Today, as a private team, we completed the survey of a total of 62 men and women who, according to their own statements, are taking part in the BC007 study and have already received the infusions of BC007. The results are beyond shocking

  2. Only 2 people report sustained improvement, all other patients are back to their pre-infusion condition after slight improvements

  3. If you look at the television reports and press articles and the hype from 2021 and their success with Long Covid, it is disproportionate to the current results of the study.

  4. Our private survey on BC007 and its results among test subjects could of course also be due to the fact that all people only received a placebo. This would explain the poor results.

  5. The probability that all 62 men and women surveyed received a placebo nationally and internationally is probably close to 0, but of course it can still happen.

  6. In 2024, Berlin Cures will definitely have to explain why their aptamer, which worked so well for Long Covid in 2021, has diminished so much in its effectiveness.

  7. We at the private foundation are 100% convinced that GPCRs are the causes of Long Covid, Post Vac and Me CFS. We have reports from other scientists that further support this theory

Criticism of this Twitter account

@sophsoph_psd, who is associated with Berlin Buyers Club (a group supposedly getting their hands on BC007 outside of the clinical trial), has this to say about the claims from @PostVFoundation:

Please don’t take the reports about BC 007 from this account seriously. Go look at their posts, they’re sharing absolute conspiracy riddled bullshit.


https://twitter.com/sophsoph_psd/status/1737878188997439687?s=20




Original tweets in German

Aktuelle News zu BC007

  1. Wir haben heute als privates Team die Befragung von insgesamt 62 Männern und Frauen beendet die gemäß Ihren eigenen Aussagen an der BC007 Studie teilnehmen und bereits die Infusionen von BC007 erhalten haben. Die Ergebnisse sind mehr als Erschreckend

  2. Lediglich 2 Personen berichten über eine anhaltende Verbesserung, alle anderen Patienten sind nach leichten Verbesserungen wieder auf dem Zustand wie vor der Infusion

  3. Wenn man sich die Fernsehberichte und Presseartikel und den Hype aus 2021 anschaut und deren Erfolg bei Long Covid steht es in keinem Verhältnis zu den aktuellen Ergebnissen der Studie.

  4. Unsere private Umfrage zu BC007 und deren Ergebnisse bei Probanden können natürlich auch dem Umstand geschuldet sein dass alle Personen nur ein Placebo erhalten haben. Dies würde die schlechten Ergebnisse erklären.

  5. Die Wahrscheinlichkeit dass alle befragten 62 Männer und Frauen national sowohl international ein Placebo erhalten haben dürfte nahe bei 0 liegen, kann aber natürlich trotzdem vorkommen.

  6. Im Jahr 2024 wird Berlin Cures definitiv erklären müssen wieso Ihr Aptamer welches im Jahr 2021 noch so gut bei Long Covid gewirkt hat in Ihrer Wirkung so sehr nachgelassen hat.

  7. Wir von der privaten Foundation sind 100 % davon überzeugt dass GPCR die Ursachen von Long Covid, Post Vac und Me CFS sind. Uns liegen Berichte anderer Wissenschaftler vor die diese Theorie weiter bekräftigen

Report by the Twitter account @lvi8a.

Since the infusion, things have gotten significantly worse, except for the heart issues. [machine translated from German]

The main thread:

I did not take iv2 bc007/placebo.
As this is a clinical trial, I am not blaming anyone.
I am giving you just facts on my condition.
My treatment since 3 weeks:

-back to SSRI as I need every helping hand I can get.
-iv therapy (ALA,VitC,Ringer)
-Back to blood thinner
-stretching, massages, keeping the muscles warm.
I will go offline again for some time as I am focusing on recovery.:mending_heart:

I’ll be back! :mechanical_arm: