Is Apheresis an effective treatment for Long Covid and ME?

[Countrygirl]

This is a very interesting video of Prof Pretorius speaking about the microclots:

https://www.tlcsessions.net/episodes/episode-18-professor-resia-pretorius-microclots

 

[Shanti1]

They are measuring SvO2 at rest in the patient's current, compensated state. That's why I think it's really useful to know what happens to it following exertion (PEM). Can it give a clue as to which of the above factors is at play?

If SvO2 drops precipitously (and then slowly recovers) following exertion that suggests to me that there is worsening RBC deformability.

Gotcha, yes, I agree.

 

[Countrygirl]

Another lecture by Prof Pretorius:

 

[perrier]

https://www.prohealth.com/library/v...ents-exciting-breakthrough-or-pure-hype-19591

An old article highlighting clots. Dr Majid Ali used to give hydrogen peroxide IVs. We here did many, and they did not solve the issue, but the veins in the arms disappeared.

 

[tyson oberle]

I don't know if this is a stupid question, but can't we use thrombolytic drugs to dissolve these microclots?

 

[Shanti1]

@tyson oberle if they are clots of the regular variety, yes, but several on this thread have commented that anticoagulant therapy doesn't provide big improvement in most peME.

If they are clots of the long-COVID type variety, they have something called antiplasmin in them in high amounts and they are resistant to break down.

Some people hypothesize that these resistant type clots may be present in pwME. While they have not yet been detected, it is an area of active investigation and hopefully we will know sooner rather than later.

 

[SNT Gatchaman]

Not sure if this has been posted already, but this is Prof. Pretorius' answer to why the d-Dimer might be normal on blood tests, despite the presence of extensive micro-clots. From a week ago.

D-dimer is a breakdown product of fibrin - microclots trap/contain fibrin, numerous inflammatory and pathological molecules, including a-2-antiplasmin (this molecule prevents microclot breakdown). So I would not suspect much D-dimer in circulation.

https://twitter.com/i/web/status/1453940182588149774

 

[GlassCannonLife]

In case anyone is interested - I actually developed a very long, 22 cm clot all up my arm after my 2nd Pfizer vaccine shot. I had done an IV vitamin C infusion that morning in that arm and it clotted from 2 cm below the infusion site all the way up to the top of my shoulder (infused in the normal elbow vein people use for blood tests etc).

I have been on 4 mg enoxaparin injections daily, and taking a lot of rutin (500 mg 3x daily), bromelain (1-2 times daily, sorry forgot the dose) and serrapeptase (120 000 SPUs) on most days to try and resolve it.

It is still not 100 % gone after nearly 7 weeks. I have been in a terrible crash for around half of this time, and it doesn't seem like the supplements or anticoagulant did anything to help my ME - unless I formed a lot of microclots that have been improving over the weeks? But I doubt it somehow.. Anyway the root dysfunction has not been touched by this drug/supplement combo. It seems like apheresis might indeed be necessary, if there are microclots present in all ME sufferers.

FYI, when not crashed, rutin gives me a little bit of improved brain clarity (not when this crashed though), and bromelain improves my IBS, but I don't notice anything else from them.

 

[aquariusgirl]

Is HELP APHERESIS only available in europe?

 

[Countrygirl]

Is HELP APHERESIS only available in europe?

Yes, apart from possibly Russia, but I don't whether it is the European region or Asian.

 

[SWAlexander]

Professor Resia Pretorius: "As with so much of this condition there are overlaps with other autoimmune disorders and Pretorius has in past studies found micro clots in the blood of those with inflammatory conditions such as Lupus and Diabetes. " https://www.tlcsessions.net/episodes/episode-18-professor-resia-pretorius-microclots

 

[Shanti1]

Professor Resia Pretorius: "As with so much of this condition there are overlaps with other autoimmune disorders and Pretorius has in past studies found micro clots in the blood of those with inflammatory conditions such as Lupus and Diabetes. " https://www.tlcsessions.net/episodes/episode-18-professor-resia-pretorius-microclots

I didn't listen to the episode, so please let me know if I am missing something, but it seems established that microclots can occur in a multitude of inflammatory conditions, the question is, are they COVID type resistant-clots. I'm thinking the diabetes type are not since Dr. Pretorius chose to use serum from type II diabetes patients to compare with clotting in serum from long-COVID patients in her landmark study.

https://assets.researchsquare.com/f...-1b81-4f44-ae0f-51071eff3093.pdf?c=1631885374

We also show that these microclots in both acute COVID-19 and Long COVID/PASC plasma samples are resistant to fibrinolysis (compared to plasma from controls and T2DM), even after trypsinisation

 

[SWAlexander]

I didn't listen to the episode, so please let me know if I am missing something, but it seems established that micro clots can occur in a multitude of inflammatory conditions, the question is, are they COVID type resistant-clots. I'm thinking the diabetes type are not since Dr. Pretorius chose to use serum from type II diabetes patients to compare with clotting in serum from long-COVID patients in her landmark study.

https://assets.researchsquare.com/f...-1b81-4f44-ae0f-51071eff3093.pdf?c=1631885374

According to Dr. Khan, Dr. Pretorius will arrive next week in Germany and examine the micro clots from apheresis patients. We may know more in about 10 days.

 

[Shanti1]

According to Dr. Khan, Dr. Pretorius will arrive next week in Germany and examine the micro clots from apheresis patients. We may know more in about 10 days.

That is great, I am looking forward to knowing more!

 

[tyson oberle]

Does anyone have an idea about how much this HELP Asheresis machine costs? I am talking about the price of the actual unit, not the price of treatments which I know was answered in a previous post.

 

[Countrygirl]

Does anyone have an idea about how much this HELP Asheresis machine costs? I am talking about the price of the actual unit, not the price of treatments which I know was answered in a previous post.

Between £1300 and 1500 per cycle, I read

 

[tyson oberle]

Between £1300 and 1500 per cycle, I read

I know the price of the treatments. I was wondering about the price of the actual machine

 

[SWAlexander]

I know the price of the treatments. I was wondering about the price of the actual machine

You may like to read this: https://www.who.int/medical_devices/innovation/hospt_equip_3.pdf

 

[5vforest]

Does anyone have an idea about how much this HELP Asheresis machine costs? I am talking about the price of the actual unit, not the price of treatments which I know was answered in a previous post.

The exact pricing is probably "proprietary" info. I'm sure someone in the healthcare industry could give you a ballpark though. Just not me

 

[Aidan Walsh]

Not trying to get off-topic but I have seen patients with a C1 Jugular Skull compression who underwent Surgery for it & Eagle Syndrome & back to 98% normal now & off all pain & autonomic medicine. One had both surgeries at the same time one was an ES ENT Neurosurgeon the other one was a Vascular Neurosurgeon so maybe it is not thick blood but blockage. One was not found on CT it was an ultrasound looking at blood flow in/out Volume & they did not file down the C1, they released the vein