BC007 Patient Views

Felt better after the first infusion (got the big one 1.900mg). Felt way worse after the second one (two weeks later) since then my heart issues accelerated - fatigue got worse as well. Got heavy side effects as well

Symptoms did die down a bit but I still have CFS. Could be potential cures like BC007 but I don't want to get disappointed if it doesn't work.

I don’t have the mental energy to read through all the studies but from what I’ve seen, there seems to be no specification as to what it’s actually supposed to help with. I just see it referred to as a “long covid treatment” but that’s so vague because LC covers such a wide range of symptoms. ME/CFS has been largely abandoned by medicine too so I’m hoping that’s being covered since it seems BC007 is like the only potential treatment I’m hearing about.

My daughter started seeing improvements around 4 weeks and this corresponded with a decrease of 30-60% in most of the cytokines at 6 weeks. Getting ready to do 12 week cytokie testing in a few weeks. 10 mg atorvastatin/300 mg maraviroc/day. Lots of people respond to this but obviously some do not. At least some of the people who don't respond have reactivations of epstein barr/cmv etc and those can be treated. Personally, I think there may be at least two groups of patients. Those with autoinflammation and those with autoantibodies. It is very interesting that Patterson claims his treatment works for 80% and Berlin Cures says BC007 will help the 20% of longhaulers who test positive for functional autoantibodies. Could certainly be coincidence. If you tested high for cytokines then you have inflammation. Some people take longer to respond to this protocol. I would give it more time as there aren't a lot of good options.

Oh, how well did it help?

It put my chronic headache from 4.5/10 baseline to a 2/10. (On my pain scale I rate a broken arm as 6/10 and a migraine can reach 9/10)

My brain fog started to lift enough to learn for a "simple exam" (numerical methods for partial differential equations, okay probably not that simple, but it was something that was easy before Covid), but by the time of the exam I was already too much affected by brain fog. It was a difference between worlds.

I didn't attempt to do anything related to physical activity, but I was feeling less fatigued.

I feel so frustrated, because I shortly had a glimpse of improvement, still not my old self. But now I am in the misery of being almost completely bedbound and in constant pain.

I wouldn’t even think about doing something ‘invasive’ like that, I would patiently wait for BC007.

I sadly don't have the patience or time. I am financially fully supported by my caregivers, because the social securities are failing for a complicated case like mine. I know that they can't support me indefinitely.

I would even consider trying treatments that have a risk of killing me, if it gave me the chance to get my old body and brain back.

If you don't have the finances to get continued apheresis, it won't be worth it. Having the knowledge that something worked temporarily and then not being able to get it anymore, it's torture.

maybe it’s just doing nothing and impatiently waiting for BC007

I guess that is the only option. I would have volunteered for the tests, but I am too far away from where it's done, which was an exclusion criterium.

I hate waiting, but it seems to be the only option. And it's frustrating, because I see the wreckage of my life piling up and might not have the resources to fix that after maybe getting healthy.

I agree. The BC007 trials took a long time to fill and I think the reason is that they only admitted people that tested positive for certain functional autoantibodies which is what BC007 has a demonstrable effect on. My understanding is this is only about 20% of longhaulers so only 1 in 5 could be accepted. So, the BC007 trial may in fact be one of the best in terms of having a very well defined cohort. With potentially multiple causes of long covid, and with some people getting better spontaneously, it seems difficult to achieve significant results.

It’s definitely at least two years out. It’s interesting that this company only has BC007 in the pipe. The preliminary research looks hopeful, but only the larger human trials will reveal the crucial details like adverse side effects, drug interactions, etc. Although omega-3 fish oil cured my own LC autoantibody issue, I know it only works in about 60% based on the research I’ve seen. This leaves the door open to other promising possibilities. It should be noted that BC007 won’t cure the other Long COVID problems such as microclots. • https://pubmed.ncbi.nlm.nih.gov/35195253/ • https://www.berlincures.com/en/about

Last I read, phase 2 trials of bc007 are expected to help 40% of us recover.

Medical advancements are very slow, but we may win the lottery eventually.

BC007 was tested only on people who tested positive for certain functional autoantibodies. Jury is still out on whether it would help if you don't test positive for those but likely not. Some scientists think autoantibodies are present but maybe not the cause. But we know several conditions are caused by autoantibodies so it stands to reason. It seems as though if it isn't aab's, then the other cause is inflammation which is what the Patterson group is treating. My child had very high cytokine levels and is on this protocol. It is working pretty well so far after almost 3 months. I would love to know if the people who respond to BC007 also have high cytokines. There does seem to be a link between aab's and inflammation via the B cells. I've always found it odd that BC007 works because it just takes aab's out of circulation but the effect seems to be permanent. The blood washing techniques remove aab's but the effect is not permanent. Seems like BC007 also somehow resets the immune system and that may be via B cells.

I’m well aware that the ME/CFS community has been burnt plenty of times with failed clinical trials, with Rituximab and what not. But I have a good feeling about this one.

Call it naivety, since I’ve only had ME/CFS for four years. And I’ve had my eyes on several clinical trials that have failed. But I think this could be good, at least for some of us.

To catch those of you up to speed who haven’t been paying attention, the trial shortened it’s followup date from a year to just a few months. Berlin Cures will be announcing the results live at a conference for treating Long Covid. They likely wouldn’t do this if phase 2 was a failure. Berlin Cures is also apparently already looking for phase 3 investors, which is a very encouraging sign. Of course it still has to pass phase 3 if it succeeds in phase 2, which would be a few years off, but it’s a start. IF everything goes well, the drug would be approved in 2-4 years. Not a short amount of time, but it could be much longer.

I’m expecting lukewarm news to (hopefully) great news from the trial. Overall (if it gets passed) I’m expecting something that would reasonably move the needle for a subset of patients. Our first approved treatment. Even if it doesn’t work for some of us, having an approved drug for Long Covid on the market would do wonders for post viral diseases being accepted. Berlin Cures is also apparently interested in trialing it for ME/CFS.

I have high hopes for sure, but there isn’t a lot to pin my hopes on. And I’ve heard good things about BC007. Interested in what you guys think.