Hello everyone,
Some of you know I’ve been trying to replicate Pretorius's findings for the last couple of months. I’m very interested in this research since, for me, it perfectly explains all my symptoms, and I think it matches with most ME research done until today.
I’ve partnered with the father of a teenager who suffers from LC. He bought an old fluorescence microscope and we’ve done some experiments with the help of a nurse. Our results weren’t that good, so when the opportunity came, we decided to travel to Germany to have more data and answers. Last week I visited Dr. Jaeger’s clinic in Mülheim to test myself for microclots.
They classify the results with a scale of 4 in three categories:
Here you can see the micrographs from my blood for microclots:
And for platelet activation:
We already know not every ME patient has clots, as @Martin aka paused||M.E. tested negative for this. (I don’t know if he is vaccinated or had SARS-COV-2 infection).
They are collecting data and writing the paper at Stellenbosch right now, and in Mülheim, they are collecting ME samples before and after treatment to know if HELP works in ME (this one will take a while since it’s just starting).
I know my results are consistent with their findings, but I think we’ll have to wait for their research to be published to learn more about prevalence.
But here comes my skepticism and why I want the community to be cautious. We don’t really know for sure what these results mean. They theorize this is caused by past microbial infection and that treating it could improve the symptoms, but we don’t know that yet.
Also, we know spike protein (and other viral proteins) causes amyloid microclots. This means recent infection or vaccination will make them visible with this test, and that doesn’t mean pathology. I know from a healthy control that tested positive for microclots that had recent vaccination. In my case, I’m triple vaxed and haven’t had COVID19 (that I’m aware of, we can’t know for sure). Would that affect my results? I don’t know.
The thing is, this is not a standardized test. This is a research tool, and it needs more time and research. That’s why the flux cytometer that Resia, Doug Kell and Polybio are trying to fund is very interesting. This way, they can standardize the test and take it to most hospitals. The question is, if they are capable of discriminating between controls and patients in times of Covid, then we’ll know for sure if this is a real issue in ME and other post viral illnesses.
For those still interested in the test, here’s a how to contact the clinic, costs and my schedule:
You might have already seen the results. I wanted to post it here earlier, but I put a thread on twitter and it kind of blew up (at least for my very very small account, haha) and I’ve been answering q’s there.
Here’s the twitter thread if you want to take a look.
Mods, feel free to move this thread if it’s not in the best place. I hope this dissertation is helpful to someone! I’ll try and check this regularly, maybe we can use this thread to share and discuss our results.
Some of you know I’ve been trying to replicate Pretorius's findings for the last couple of months. I’m very interested in this research since, for me, it perfectly explains all my symptoms, and I think it matches with most ME research done until today.
I’ve partnered with the father of a teenager who suffers from LC. He bought an old fluorescence microscope and we’ve done some experiments with the help of a nurse. Our results weren’t that good, so when the opportunity came, we decided to travel to Germany to have more data and answers. Last week I visited Dr. Jaeger’s clinic in Mülheim to test myself for microclots.
They classify the results with a scale of 4 in three categories:
- Platelets - They look at platelet spreading (I have a 2/3 result) and clumping (also 2/3)
- Microclots - Significant presence (3)
- Endothelial Damage - Very little (2)
Here you can see the micrographs from my blood for microclots:
And for platelet activation:
We already know not every ME patient has clots, as @Martin aka paused||M.E. tested negative for this. (I don’t know if he is vaccinated or had SARS-COV-2 infection).
They are collecting data and writing the paper at Stellenbosch right now, and in Mülheim, they are collecting ME samples before and after treatment to know if HELP works in ME (this one will take a while since it’s just starting).
I know my results are consistent with their findings, but I think we’ll have to wait for their research to be published to learn more about prevalence.
But here comes my skepticism and why I want the community to be cautious. We don’t really know for sure what these results mean. They theorize this is caused by past microbial infection and that treating it could improve the symptoms, but we don’t know that yet.
Also, we know spike protein (and other viral proteins) causes amyloid microclots. This means recent infection or vaccination will make them visible with this test, and that doesn’t mean pathology. I know from a healthy control that tested positive for microclots that had recent vaccination. In my case, I’m triple vaxed and haven’t had COVID19 (that I’m aware of, we can’t know for sure). Would that affect my results? I don’t know.
The thing is, this is not a standardized test. This is a research tool, and it needs more time and research. That’s why the flux cytometer that Resia, Doug Kell and Polybio are trying to fund is very interesting. This way, they can standardize the test and take it to most hospitals. The question is, if they are capable of discriminating between controls and patients in times of Covid, then we’ll know for sure if this is a real issue in ME and other post viral illnesses.
For those still interested in the test, here’s a how to contact the clinic, costs and my schedule:
- You should send an email to the gmail account for patients posted on doctor Jaeger’s website. Tell them you want to do the microclot and platelet assessment on the first date available and to see the doctor after to talk about your results. Please give them a couple of days to answer since they are pretty busy. The moment you have your lab date scheduled, call reception and ask for an appointment to see your results with Jaeger the next day. This way, it will be easier for you to talk with her.
- Microclot test is 250€ and platelet assessment another 250€. You need to pay for this the same day of the test. You’ll also need to pay for the doctor's visit and the labs they order (this depends on what she decides, and I don’t know the exact amount since I’m still waiting for them to send me the invoice).
- The microscope testing is done in the morning (between 8.00 and 11.00 am) and you can pick your results in the afternoon with a memory USB (I think this might change soon). I saw the doctor after picking up my results, but you can schedule this for the next afternoon and it would be less stressful. Also, remember to take relevant results and history for the doctor to see.
You might have already seen the results. I wanted to post it here earlier, but I put a thread on twitter and it kind of blew up (at least for my very very small account, haha) and I’ve been answering q’s there.
Here’s the twitter thread if you want to take a look.
Mods, feel free to move this thread if it’s not in the best place. I hope this dissertation is helpful to someone! I’ll try and check this regularly, maybe we can use this thread to share and discuss our results.
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