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.
- 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/
