Is Apheresis an effective treatment for Long Covid and ME?

[godlovesatrier]

Thanks for the updates @Countrygirl

It's really interesting about the glandular fever. Sadly while I didn't fully recover from my acute reactivation last year my ME certainly isn't caused by glandular fever. Not unless I got it in 2016 but the symptoms weren't the same and I never had ebv type symptoms so I don't think it could have been. Nor could it have been the flu because it was at the end of March. Possibly but unlikely.

I guess if the treatment becomes available in the UK it will be much easier and god allowing a bit cheaper to get the treatment. I assume this has no comparison to multi pass ozone treatment. As I know some people feel tons better after they get that done.

 

[GlassCannonLife]

I got results back from some blood tests. For context, I still have a very small clot in my arm that is breaking down. I had not taken Clexane (40 mg) for around 3-5 days on the day of the blood test. I am now taking it for a 20 day period (currently around a week in) to be on the safe side while this finishes clearing up.

INR (international normalised ratio) 1.1 (range 0.8 - 1.2)
PT (prothrombin time) 12 s (range 8 - 14)
APTT (activated partial thromboplastin clotting time) 27 s (range 23 - 38)
D-dimer 0.83 ug/mL FEU (range 0.00 - 0.40)

As expected, the clot has led to increased d-dimer levels, while the rest are in range. Not sure why PT would be near the top of the range and then APTT would be near the bottom, but I don't know much about testing for clotting.

I am tempted to say that aside from the vaccine-induced issues I have had with clotting, I don't seem to have any clear indication of presence of microclots or strange blood viscosity. Please let me know if you think otherwise!

 

[5vforest]

This updated treatment protocol has been placed on the internet from the Mulheim clinic:

I was interested to read in an email from the clinic that people with EBV-triggered ME have VERY clotty blood.

I'm glad they are "systematizing" this and that they have protocol. And I would probably want to do this protocol myself if I had long COVID.

However, the way that they present this information makes them lose a ton of credibility in my opinion.

So much of what they have published in the PDF is still speculation.

 

[Countrygirl]

Sadly, it sounds as if the admins and even the clinic have been hassled by frustrated, rude and angry people on the waiting list and/or the Facebook group concerning the last file they uploaded that I posted here a few hours ago. . As Markus (I am assume it is he) has removed the file so it is no longer available and has said they are not prepared to accept the negativity and criticism from those who are waiting and so have stopped this particular service they provide. This is part of the message:

We hoped the gathered info/crowd intelligence would help long haulers to get rid of their symptoms faster, stop the LC clock earlier and/or prepare them for Help Apheresis as well as in general improve combined results. But the overwhelming negativity towards this project has led to our decision to no longer offer this service.

 

[5vforest]

I wonder if they can summon the self awareness to realize why people are reacting in that manner.

(not that it excuses any rudeness towards them. I wouldn’t know what goes on in their group .)

I am very suspicious of anyone who seems criticism as an automatic negative

 

[SWAlexander]

Interesting. I wonder how they came to that conclusion about EBV triggered ME or what evidence they have for that?

This could be the clue: https://www.mdpi.com/2076-0817/10/6/763/htm

 

[paul80]

Sadly, it sounds as if the admins and even the clinic have been hassled by frustrated, rude and angry people on the waiting list and/or the Facebook group concerning the last file they uploaded that I posted here a few hours ago. . As Markus (I am assume it is he) has removed the file so it is no longer available and has said they are not prepared to accept the negativity and criticism from those who are waiting and so have stopped this particular service they provide. This is part of the message:

We hoped the gathered info/crowd intelligence would help long haulers to get rid of their symptoms faster, stop the LC clock earlier and/or prepare them for Help Apheresis as well as in general improve combined results. But the overwhelming negativity towards this project has led to our decision to no longer offer this service.

Why are they angry!?

 

[Countrygirl]

Here is a new testimonial from a Long Covid patient who has had a couple of sessions of HELP apheresis:

Hi, just wanted to share my experience of HELP apheresis. I’m a 29 year old who got covid in March 2020. I didn’t end up in hospital but was weak, bedbound and feverish for six weeks. Following this the fatigue never really left and in February 2021 I stopped being able to work and have been mainly housebound with fatigue, hot flushes that lasted for hours, insomnia but also sleeping through the afternoon, brain fog, memory loss, PEM, restless leg syndrome, palpitations, vision problems, POTS, joint and muscle pains and just being confused and passing every day staring into space. I’ve had 30+ doctors’ appointments tried all sorts of tests and vitamins and nothing made much difference.

I’ve now done 2 apheresis sessions. After the first I felt tired but from the procedure, not from the eternal fatigue. After the second I felt healthy. I slept for the first time in months, without hot flushes and waking up once. The ever lingering shadow of fatigue has left and I don’t have a scarily high heart rate when standing up. I almost cried with happiness during yesterday’s session because I’m getting my life back and I can feel it. All my family have noticed that I’m back to my usual bubbly, energetic self. I’ve still had a few brain fog moments but as a March 2020-er I thought I’d need many more than two sessions to see any difference.
For the actual treatment it is very important to eat and drink well and be calm and relaxed. It helps your blood flow at a constant rate and means you’ll be done in 2-3 hours. Somehow I have veins that shrink anywhere near a needle so I took longer but they took very good care of me and everyone else I met had no problems during treatment.

Obviously it’s still early, but from having heard others experiences, I believe that this is permanent and that the brain fog will clear with time. I plan to do one more session and then head home. Please feel free to ask any questions, my DMs are open and I’d love to reassure others and see more people cured.

 

[andyguitar]

Somehow I have veins that shrink anywhere near a needle so I took longer

I wonder if they had that before they got covid.

 

[GlassCannonLife]

Here is a new testimonial from a Long Covid patient who has had a couple of sessions of HELP apheresis:

Hi, just wanted to share my experience of HELP apheresis. I’m a 29 year old who got covid in March 2020. I didn’t end up in hospital but was weak, bedbound and feverish for six weeks. Following this the fatigue never really left and in February 2021 I stopped being able to work and have been mainly housebound with fatigue, hot flushes that lasted for hours, insomnia but also sleeping through the afternoon, brain fog, memory loss, PEM, restless leg syndrome, palpitations, vision problems, POTS, joint and muscle pains and just being confused and passing every day staring into space. I’ve had 30+ doctors’ appointments tried all sorts of tests and vitamins and nothing made much difference.

I’ve now done 2 apheresis sessions. After the first I felt tired but from the procedure, not from the eternal fatigue. After the second I felt healthy. I slept for the first time in months, without hot flushes and waking up once. The ever lingering shadow of fatigue has left and I don’t have a scarily high heart rate when standing up. I almost cried with happiness during yesterday’s session because I’m getting my life back and I can feel it. All my family have noticed that I’m back to my usual bubbly, energetic self. I’ve still had a few brain fog moments but as a March 2020-er I thought I’d need many more than two sessions to see any difference.
For the actual treatment it is very important to eat and drink well and be calm and relaxed. It helps your blood flow at a constant rate and means you’ll be done in 2-3 hours. Somehow I have veins that shrink anywhere near a needle so I took longer but they took very good care of me and everyone else I met had no problems during treatment.

Obviously it’s still early, but from having heard others experiences, I believe that this is permanent and that the brain fog will clear with time. I plan to do one more session and then head home. Please feel free to ask any questions, my DMs are open and I’d love to reassure others and see more people cured.

Wow, I really hope this works for some pwME.

So jealous of her progress haha. I can hardly imagine getting fully better, must feel amazing to have so much change from an intervention.

 

[GlassCannonLife]

So is anyone self medicating (despite their recommendations not to) and having any kind of results?

Or trying serrapeptase, nattokinase, aspirin, etc if they don't have access to the official drugs?

 

[smithsj]

I was interested to read in an email from the clinic that people with EBV-triggered ME have VERY clotty blood.

Any chance you could share with us more about this? What clinic it's from, anything more that they said?

On a related note, I think I'm going to add a 81-mg aspirin pill to my daily rotation...the more I think about it, the more micro clots could explain a lot about what feels wrong with me (EBV-onset CFS, with POTS emerging a bit later I think but not confident that it wasn't there since the initial infection).

If anybody knows of any doctors in the New York area who would be down to try one of the anticoagulation protocols, let me know!

 

[JES]

So is anyone self medicating (despite their recommendations not to) and having any kind of results?

Or trying serrapeptase, nattokinase, aspirin, etc if they don't have access to the official drugs?

Yes, I made a comment earlier here. Those blood thinning supplements do not remove the component that is causing the issue, you need apheresis for that. If you purely want to remove micro clots and reduce symptoms by improving blood flow, I think those naturals are quite effective and safe alternatives compared to pharmaceutical blood thinners.

 

[Martin aka paused||M.E.]

Unfortunately, I have also watched ppl getting rude towards the Apheresis team. Criticism is ok. But these were personal insults. It's what many committed people describe: if you offer help for free, you go through stormy weather. It's my experience as well.

As for the ME/CFS part: I can't speak about details, but I'm kind of different from the other two. So, it might well be that it helps in ME/CFS.

I had a long conversation with William Weir when I was at the clinic and he is right: there is serious science going on there. Jaeger takes my case serious but has an unbelievable workload. So, we have to wait a bit longer. I hope she manages to call me soon.

What Pretorius also does is looking for inflammatory markers in the blood. As I said in Twitter I have never had so much blood drawn...

Let's just wait and hope that this might be a solution for some.

 

[Countrygirl]

Here is Dr Asad Khan talking recently about his treatment with references to ME.

https://www.tlcsessions.net/episode...uWxy-Ao5im5PbkRWxVwVy1X9x11WpHdRZM0inosYgCyc4

 

[SWAlexander]

Please help.
I forgot the persons name (avatar) who asked for a doctor because she/he can´t find one in Switzerland.
I found one.
There is an article (in German) about a Neurologin Maja Strasser: https://www.nau.ch/politik/bundesha...r-hunderttausenden-long-covid-fallen-66053786
Her address: Neurologin Maja Strasser, Hauptgasse 5, 4500 Solothurn, Switzerland

 

[SWAlexander]

Thanks I found the post. https://forums.phoenixrising.me/threads/austria-michael-stingl.85315/#post-2379728

 

[Marylib]

Sadly, it sounds as if the admins and even the clinic have been hassled by frustrated, rude and angry people on the waiting list and/or the Facebook group concerning the last file they uploaded that I posted here a few hours ago. . As Markus (I am assume it is he) has removed the file so it is no longer available and has said they are not prepared to accept the negativity and criticism from those who are waiting and so have stopped this particular service they provide. This is part of the message:

We hoped the gathered info/crowd intelligence would help long haulers to get rid of their symptoms faster, stop the LC clock earlier and/or prepare them for Help Apheresis as well as in general improve combined results. But the overwhelming negativity towards this project has led to our decision to no longer offer this service.

So sad. People can be so aggressive and take out their frustrations on those willing to help.

 

[MonkeyMan]

Here is Dr Asad Khan talking recently about his treatment with references to ME.

https://www.tlcsessions.net/episode...uWxy-Ao5im5PbkRWxVwVy1X9x11WpHdRZM0inosYgCyc4

Thanks for posting this! The most important thing here (IMHO) is what's written in the blurb:

Khan has just finished his 12th apheresis therapy and says he is feeling much better. But as you will hear in the interview it the recent addition of three anticoagulant drugs that have really made a remarkable difference. So before we start spending all our savings on this expensive therapy maybe we just need the drugs. All will be made clear as more research is published.

 

[andyguitar]

But as you will hear in the interview it the recent addition of three anticoagulant drugs that have really made a remarkable difference. So before we start spending all our savings on this expensive therapy maybe we just need the drugs. All will be made clear as more research is published.

Thanks for pointing that out @MonkeyMan as it raises a bit of a problem with this treatment and any clinical trial. How to determine what is having the effect. Sure we could say it does'nt matter, just follow what the clinic has done. So removal of any clots combined with the drugs. But to get this treatment available on the UK NHS (and i suspect get it funded by insurance companies) the evidence that both the clot removal and drugs are needed will have to be very good.