Is Apheresis an effective treatment for Long Covid and ME?

[SNT Gatchaman]

Therapeutics are a long way out of my expertise. I read that nattokinase works against plasminogen activator inhibitor 1 and so promotes fibrinolysis. The micro-clots were said to contain anti-plasmin 2 as the anti-fibrinolysis factor, so that may not be the right target. Additionally, there are 3 platelet receptors they are taking aim at, each promoting platelet activation.

According to the video, these platelet receptors of interest are Col/EPI, Col/ADP and GP IIb/IIIa.

Someone with expertise would have to take this further, but I was interested to note that two of those receptors relate to collagen. I think that is the collagen you would find exposed by damaged endothelium. Is that the link with EDS? Does vascular collagen over-activate platelets and set patients up for ME? Can't wait to read the final summary paper when all of this is put together...

 

[junkcrap50]

@SNT Gatchaman One piece of anecdotal evidence that I’ve seen one other pwME say is that Nattokinase/Bromelain made me worse. I had to discontinue after about 10 days. Felt like a possible Herx reaction and felt flu like with heavy malaise. Went away after discontinuing and I’m back to baseline now after a couple days.

what do you think that could be about? I don’t notice the same with low dose aspirin but I don’t notice any positives either

Well in the Pretorius paper, they found that when they dissolved the microclots, the clots released a lot of inflammatory molecules:

Our results show that various inflammatory molecules that were substantially increased in the supernatant (after first trypsinization) of COVID-19 and Long COVID/PASC samples compared to the supernatant from the controls. After the second trypsinization step, various inflammatory molecules were also substantially increased in the digested pellet deposits from the COVID-19 and Long COVID/PASC compared to the control samples.

 

[GlassCannonLife]

Anyone know why rutin isn't mentioned in the list of potential supplements to use? I believe it has a fair amount of thrombolytic activity.

 

[bensmith]

Maybe already posted. But he says here that you have to manage your treatment or it can/will fail. We have discussed that, but i thought i’d post it anyway. Wish the treatment was more deterministic.

Also says germany and cyrpis till 2023. Really wished for 2022. I guess it wouldnt be worth to fly to germany . If he says you can mess up treatment. It prob kill me getting there.

I also wonder if the “bad patients” would see improvement regardless, just need more treatment.

Also i read this machine is obsolete, is that true?

https://imgur.com/a/z9Sn3er

 

[Gingergrrl]

I lost track of this thread on page 13 b/c it moved too fast and I couldn't keep up with it! I was curious (in case I missed it), has it been explained why this Apheresis treatment for Long COVID patients is only available in Germany? Wouldn't these machines be available in other countries, too? Or is there some other issue that has nothing to do with the machines?

 

[SNT Gatchaman]

It's a specific type of apheresis technique and I believe the machine is different in this regard. It is popular in Germany but not other countries. I imagine the history relates to the manufacturer of the machine being Braun. Anyhow I believe they use it in families with severe hypercholesterolaemia and over the years expanded its indications. Suddenly much more...

ETA: maybe the machines are standard, but require a special filter.

 

[junkcrap50]

Thanks for cross posting facebook stuff here! I don't have facebook, but will be reluctantly getting one soon just to view this stuff. Is there any info on there on what they are doing about autoantibodies? Are they resolving on their own after help apheresis or are they doing some immunoabsorption at the same time?

So Dr. Klotz was 100% fully cured via help apheresis? What was his LC severity? Very interesting that PEM disrupts the healing. I also didn't know it was 1x/week. How did Dr. Khan get 13 of them so quickly? I guess this has been going on for several months now.

I am trying to contact a doctor in the US that does HELP apheresis, but still drafting an email/letter. I'm going to tell him about this research and that he might be interested and get covid funding for it. Hopefully he will participate in the research, and on a longer shot, consult with me and see if he'd do it for me/any patients.

 

[bensmith]

Wonderful news @junkcrap50 I didnt know we had any here in the states.

 

[Gingergrrl]

It's a specific type of apheresis technique and I believe the machine is different in this regard. It is popular in Germany but not other countries. I imagine the history relates to the manufacturer of the machine being Braun. Anyhow I believe they use it in families with severe hypercholesterolaemia and over the years expanded its indications. Suddenly much more...

Thank you for explaining this and that makes sense.

 

[junkcrap50]

Wonderful news @junk. I didnt know we had any here in the states.

Well, it's a bit premature to mention, as writing this email/letter is taking me so long, but I figure I'd give it a shot. I'm also looking into trying to take fluorescent photographs of my blood myself to look for microclots, as access to a fluorescent microscope is fairly easy (if the program/lab director lets you). Nearly every university has a "Microscopy Facility" for researchers to use and often let outsiders use it for a fee. But I have to figure out the practical matters of it all and write to whoever is in charge of the microscopes. I'm working on a post explaining this and how others might be able to do it. But writing is my CFS kryptonite, so it takes forever. And I'm busy with other life things at the moment.

 

[bensmith]

Ok cool, ty

Apparently, from that forum, the machine is obsolete and only made by braun. Who also is not interested in making these machines for long covid etc. a person on their is trying to get a compaign going. I will maybe make a post when he does. If i can, very ill atm.

The logistics look bad atm too. We’d need thousands of machines at minimum, and for some reason these clinics in germany are losing money at 1000k a treatment. I think a clinic should treat 30 to 50 a month at present. Individuals.

 

[Countrygirl]

So Dr. Klotz was 100% fully cured via help apheresis? What was his LC severity? Very interesting that PEM disrupts the healing. I also didn't know it was 1x/week. How did Dr. Khan get 13 of them so quickly? I guess this has been going on for several months now.

Asad went to Germany, I think, at the end of September, so he has had more than one treatment a week.

 

[andyguitar]

The logistics look bad atm too. We’d need thousands of machines at minimum

I'm optimistic that drugs will be developed or repurposed to treat the micro clots, Ben.

 

[SNT Gatchaman]

Agree with @andyguitar. If this pans out in Long Covid and extends to (at least early-phase) ME, I might expect drug treatments as first line, with apheresis supplementing for treatment-resistant or drug-intolerant. This is crystal-ball gazing of course.

 

[junkcrap50]

Agree with @andyguitar. If this pans out in Long Covid and extends to (at least early-phase) ME, I might expect drug treatments as first line, with apheresis supplementing for treatment-resistant or drug-intolerant. This is crystal-ball gazing of course.

Not sure how possible drug treatment only will be if dissolving all these clots releases tons of inflammatory markers. But perhaps the the drug treatments work slowly enough that the released inflammation can be managed with supplments. For isntance, Holtorff's long term anticoagulation protocol for lyme and bioflims takes 9-12+ months.

Reading Dr. Jaeger's paper on HELP apheresis in covid (acute), it also removes "cytokines interleukin(IL)-6, IL-8 and TNF-α, and reduces C-reactive Protein (CRP)concentration by more than 50% (28,35,36). The heparin adsorber completely eliminates endo-and ectotoxins so that the excessive inflammatory response...can calm down."

 

[SWAlexander]

 

[SWAlexander]

 

[Breagjam]

I'm optimistic that drugs will be developed or repurposed to treat the micro clots, Ben.

It seems the NIH Recover Initiative needs to look into this. I wonder if anyone there or any of the doctors/researchers to whom they’ve awarded grant money are aware of discovery of the microclots and the apheresis treatment.

 

[Countrygirl]

Dr Jaeger has updated the pre-apheresis treatment for patients.

 

[andyguitar]

Cheers for posting that @Countrygirl Looks like something that should not be tried without proper medical supervision!