Is Apheresis an effective treatment for Long Covid and ME?

[junkcrap50]

I'm also not convinced we'd be able to get a pathology lab to do it unless we got very lucky. I worked in medical device development, and it is highly likely that they follow protocols that are strictly governed by a QMS. Doing something that isn't a standardised and approved process would just be unacceptable. They'd possibly have to do calibration, cleaning, revalidation, etc depending on what their QMS documentation requires and what equipment they used for the test. This is to ensure that uncontrolled practices don't affect their highly impactful work (diagnosing potentially serious illnesses), and this is standard practice in pharmaceuticals/medical device work. It's all about traceability and control of various risks.

I've never worked in pathology so I'm not sure what they specifically do, but I am just sceptical that we'd be able to convince validated, high throughput labs to just do a few off-the-books samples for us.. I could be wrong though, could contact some and see.

I understand why you think they would not want to alter their standardized, validated system. But I do not think that would be the case in a pathology lab. Maybe if you sent your sample to a national, huge pathology lab sized like LabCorp or Quest, then maybe. But pathology labs are often just doctor's offices of pathologists who don't see patients, but run a lab, so most cities have one or two. Also, there would not be any need to re-validate anything, as they use a small number of microscopes for many different types of pathology testing. It's a matter of using different slides or "petri dishes" that they put onto microscope, which they do every day. The variation is how they prepare the samples.

But I could also be wrong.

I may try and contact a few pathology labs near me and see if they would do it. I think if they got a clear, organized order like a doctor would write with what I'm looking for, steps to take, and give Pretorius's reference, it might be a good shot.

My other idea on who would could be used to do this is the blood bank. Again, no interpretation but produce photos of the findings. Since they do blood smears all the time for all donations, I think a patient could convince them to do it. But it may also require a doctor's order describing the procedure.

Fortunately for me, I family friend does have a microscope that I am trying to arrange a time to use. So I would only be pursuing the pathology lab & blood bank for others' benefits. And I don't really want to pay for pathology lab fees if I already have an answer from my friend's microscope.

 

[rmbotica]

I enquired with a Apheresis clinic in Melbourne, Australia. Not really sure what to respond lol

 

[GlassCannonLife]

I enquired with a Apheresis clinic in Melbourne, Australia. Not really sure what to respond lol

View attachment 46005

Ah, damn, sounds like they don't do HELP-apheresis then?

Not sure what ASFA is but you could respond saying that it isn't being used to remove a specific antibody (unless the autoantibodies that BC007 treats are also removed?), but is instead being used to remove microclots that have been observed in a great number of patients. Current clinical trials are underway under the supervision of Dr X and Y (not sure who's doing what sorry, but maybe Pretorius?) for long covid, and an ME/CFS trial is due to start in January next year (IIRC). It is still an experimental therapy but has shown promise.

I'm not sure if they would be able to help though if they don't have the appropriate equipment.. Is there a completely different machine required for the HELP-apheresis? Or can you adapt other machines to do various forms of apheresis?

 

[bensmith]

I’m not certain but i think it’s the same machine, it’s a matter of fitting it to the needs of the procedure. And getting a person who knows how to administer treatment.

 

[Akasha]

For what I understood, the problem with HELP apheresis is that is only approved by the EMA (European Medicine Agency).
That's why it's only offered in Europe.

 

[ChookityPop]

Please consider that other viruses and bacterial could lead to clotting.
After sepsis, 2016, my blood was very thick. The PICC line was constantly blocked, and I could not lift my arms and barely could walk. Sonogram revealed blood clots in left arm and 7 clots in the left leg.
What was done about it? – Nothing. No blood thinners, no fallow up.

Thats wild! I assume ultrasound would be able to identify clots as well?

 

[smithsj]

I enquired with a Apheresis clinic in Melbourne, Australia. Not really sure what to respond lol

View attachment 46005

I think this is the best kind of activism we can do. The answer will be "no" – at least the first time. I'd recommend that everybody email any even vaguely related doctor they can find, ask about micro clots/HELP/blood thinners, then find another CFS patient in the same area to email them a week or so later. Doctors hear something from one patient and they discount it, but when they get the same question over and over again, eventually they look into it. I emailed a CFS doctor here in NYC about it, and got a curt "sorry, no" response. I asked somebody else on this forum to email them a week later and they got a "we're looking into it" response. It works, I promise! If anybody wants me to follow up with a doctor (either here in NYC or wherever), let me know, happy to help.

 

[SWAlexander]

I think this is the best kind of activism we can do. The answer will be "no" – at least the first time. I'd recommend that everybody email any even vaguely related doctor they can find, ask about micro clots/HELP/blood thinners, then find another CFS patient in the same area to email them a week or so later. Doctors hear something from one patient and they discount it, but when they get the same question over and over again, eventually they look into it. I emailed a CFS doctor here in NYC about it, and got a curt "sorry, no" response. I asked somebody else on this forum to email them a week later and they got a "we're looking into it" response. It works, I promise! If anybody wants me to follow up with a doctor (either here in NYC or wherever), let me know, happy to help.

You are right and yes, it works. I´m writing to doctors in Germany asking if they are familiar with the treatment H.E.L.P Apheresis and if their Lab know about DOACs, TEG & PFA200 Fibrinogen.
then I send this instuction.

One called back and I have an appointment on Dec. 21.

 

[GlassCannonLife]

You are right and yes, it works. I´m writing to doctors in Germany asking if they are familiar with the treatment H.E.L.P Apheresis and if their Lab know about DOACs, TEG & PFA200 Fibrinogen.
then I send this instuction.
View attachment 46010
One called back and I have an appointment on Dec. 21.

That's great news! An appointment to discuss them potentially checking for clots etc, or to discuss doing HELP-apheresis there?

 

[smithsj]

One called back and I have an appointment on Dec. 21.

!!! Amazing, good work!

 

[SWAlexander]

That's great news! An appointment to discuss them potentially checking for clots etc, or to discuss doing HELP-apheresis there?

I ask all doctors ans labs if this equipment are available: fluorescence microscope Zeiss Axio Observer 7 fluorescence microscope with a Plan-Apochromat 63x/1.4 Oil DIC M27 objective (Carl Zeiss Microscopy, Munich, Germany) using the excitation wavelength of 450nm to 488nm and emission from 499nm to 529nm.
Only then they can test, according to the instruction, for micro clots (von Willebrand or Leiden).

 

[vision blue]

[QUOTE="

It turns out alpha-2-antiplasmin is a serine-proteases inhibitor (ref) (ref). Nattokinase, serrapeptase, and lumbrokinase are all serine-proteases,

(Aug 2021)[/QUOTE]

Can you say more on serine-proteases? HOw are these related to just the amino acid serine? So one can measure the amino acid serine in serum and in urine. Do these have any relation to serine proteases?
Also curious if you thinj they are relevent to many with CFS or are they specific to COVID? Does the link to the articles you've given discuss the role of serine protease in COVID?

 

[SWAlexander]

Why H.E.L.P Apheresis is necessary.

Today my Hematology ACTH test. Dec. 14th.
Protocol:
Arrival 7:30 AM, no medication for 24 hours - no food and nor liquid for 12 hours (except water without carbon).

7:40 AM catheter left arm set after 2nd attempt.

7:45 AM blood pressure test: sys 196
Dr. - no blood draw until blood pressure down to are least 160.

8:10 AM blood pressure SYS 157

Blood draw failed – blood clot blocked blood flow. Blood draw not possible even after several flush out.

8 :15 AM Second catheter in right arm. Blood draw okay and ACTH injected.
20 min waiting for ACTH reaction.

Reaction: Metal/ether taste in mouth and nose and very bad migrain. Nausea inner vibration/shaking began.
I suggested the possibility of low blood sugar.

8:35 AM Blood sugar test: 60
Glucose IV for 10 min and 2nd ACTH blood draw and another sugar test: 75

30 Min waiting while laying down.

9:10 AM Blood draw for last ACTH, not possible blood clot blocked blood flow: new catheter in hand wrist.
Blood pressure sys 145, blood sugar test: 100

9:40: AM Last blood sugar test 95
Blood pressure laying down sys 126
Blood pressure sitting sys 176
Blood pressure standing sys 198

Was not allowed to leave. Dr. recommended to be brought to a hospital. I declined and explained that I know all these symptoms incl. thrombosis problems since sepsis in 2016. Finally home at 11 am.
Sleep for 4 hours. Still exhausted.
Now:
Blood pressure sitting sys 128,
blood sugar 92.

 

[Crux]

How awful, @SWAlexander !

Please recover soon.

 

[SWAlexander]

Binding of phosphatidylserine-positive microparticles by PBMCs classifies disease severity in COVID-19 patients https://onlinelibrary.wiley.com/doi/10.1002/jev2.12173

Abstract
Infection with SARS-CoV-2 is associated with thromboinflammation, involving thrombotic and inflammatory responses, in many COVID-19 patients. In addition, immune dysfunction occurs in patients characterised by T cell exhaustion and severe lymphopenia. We investigated the distribution of phosphatidylserine (PS), a marker of dying cells, activated platelets and platelet-derived microparticles (PMP), during the clinical course of COVID-19. We found an unexpectedly high amount of blood cells loaded with PS+ PMPs for weeks after the initial COVID-19 diagnosis. Elevated frequencies of PS+PMP+ PBMCs correlated strongly with increasing disease severity. As a marker, PS outperformed established laboratory markers for inflammation, leucocyte composition and coagulation, currently used for COVID-19 clinical scoring. PS+ PMPs preferentially bound to CD8+ T cells with gene expression signatures of proliferating effector rather than memory T cells. As PS+ PMPs carried programmed death-ligand 1 (PD-L1), they may affect T cell expansion or function. Our data provide a novel marker for disease severity and show that PS, which can trigger the blood coagulation cascade, the complement system, and inflammation, resides on activated immune cells. Therefore, PS may serve as a beacon to attract thromboinflammatory processes towards lymphocytes and cause immune dysfunction in COVID-19.

More at: https://onlinelibrary.wiley.com/doi/10.1002/jev2.12173

 

[ChookityPop]

Maybe this could help a little further.
I asked 9 of my friends to have a vWF/Factor-Leiden-test. 7 came out positive. Neither one had covid. That means micro-clots are there before covid. VWF is a genetic mutation.

Interesting. Do they have ME?

 

[SWAlexander]

Interesting. Do they have ME?

Yes. I also have von Willebrand Factor 2 and Factor 5 and low cortisol.

 

[ChookityPop]

Yes. I also have von Willebrand Factor 2 .

Factor II, also known as prothrombin?

 

[GlassCannonLife]

I ask all doctors ans labs if this equipment are available: fluorescence microscope Zeiss Axio Observer 7 fluorescence microscope with a Plan-Apochromat 63x/1.4 Oil DIC M27 objective (Carl Zeiss Microscopy, Munich, Germany) using the excitation wavelength of 450nm to 488nm and emission from 499nm to 529nm.
Only then they can test, according to the instruction, for micro clots (von Willebrand or Leiden).

I don't think you would need that exact model but something similar would be good!

 

[smithsj]

I reached out to Dr. Benjamin Natelson in NYC, he responded to me:

I have reached out to experts in hematology regarding the report from S, Africa. Two experts concurred in concerns. This is what one said to me -->

Data nonexistent. Read the abstract for the article. Seems to imply we need to measure and address platelet dysfunction. RECOVERY-aspirin study just published. 10,000 inpatients RCT, no benefit from asa. Chance of targeted outpatient therapy based on TEG being helpful seems remote and doubt its worth studying.

I think that's a bit short-sighted...the current therapies are a bit more aggressive than just aspirin.