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Apheresis - a chance or dangerous?

Blazer95

Blazer95

..and we built castles in the Sky.
Messages
199
Location
Germany
Hey,

my GP has recently started talking about Apheresis and the work of Dr. Beate Jäger
https://www.frontiersin.org/articles/10.3389/fcvm.2022.1007636/full

He said this has been technically a experimental long covid and post-vaccine treatment.
What we found are chronically elevated Serum Amyloid A and some weird fibrills in a darkfield microscopy of my blood suggestin that something is going on in there that could technically be filtered.

On the other hand there was atleast one ME/CFS patient that got so bad after apheresis that he unalived himself:
https://forum.sickandabandoned.com/...ient-recovery-beate-jaeger-and-colleagues/179

The reviews across the internet are very mixed. Lots of people report worsening, long lasting crashs and other side effects, wether other people on the other hand report massiv benefits.

The ME/CFS patients that seem to profit from this are not a very high number and the success rate seems to be better in long covid patients.

Does anyone know anything about this treatment? Why are people getting so bad from it while others make big gains from it? Hard to see what the mechanisms of worsening are here because there are just technically filtering clots and inflammatory buildups out of the blood.

Thanks in advance.
 
Treeman

Treeman

Senior Member
Messages
793
Location
York, England
I've looked into this and think it's worthy of a try, if you have the money.

I think the longer and more severe the illness the more challenging it becomes to try, and crashing etc should be expected.

The below company I have spoken to, and they come across as honest and as knowledgeable as can be. The do say not everyone gets better with the treatment and not everyone gets 100% better. Some are ok for a while but then decline and go back for more treatment.

A few of their patients reports, also have a look around their website:

https://apheresiscenter.eu/before-and-after-videos

good luck.
 
Treeman

Treeman

Senior Member
Messages
793
Location
York, England
Blazer95 said:
Money is a big Problem. I Spoke with Family and Friends and we would be able to pay for 2 apheresis (3.000€) but Not more...

I am afraid of it but very curious.
Click to expand...

I think 2 will not be enough. If you speak to them in Cyprus, they'll probably recommend around 6 and then on top of that you've got to get there and stay in a hotel. I would expect to stay for about a month, maybe longer.

Alot depends on how a person reacts to the treatment and how much rest is needed between treatments.

The lady below had a ME/CFS diagnosis.

 
Blazer95

Blazer95

..and we built castles in the Sky.
Messages
199
Location
Germany
Yikes. I should start playing the lottery once a month again Like i used Too. One Ticket for 10€ a month haha. Sounds reasonable.

(Not recomming this gambling has the risk of addicition)
 
Alix

Alix

Messages
6
Blazer95 said:
What we found are chronically elevated Serum Amyloid A and some weird fibrills in a darkfield microscopy of my blood suggestin that something is going on in there that could technically be filtered.
Click to expand...
Hey friend, I’m after the same removal of those fibril and amyloid proteins. After research I landed on Nattokinase due to the safety of it. Nattokinase is an ezyme produced by Bacillus subtilis and it produces a strong fibrinolytic effect. Study


So to do this I have a couple paths. First is that I make Natto at home to eat in the morning. And then I supplement with a clean sourced supplement of Nattokinase. Nattokinase works best if the B. subtilis can avoid your stomach acid so I enteric coat that supplements with confectioner’s glaze (shellac in alcohol).

If you go this route it’s important to know that this strong fibrinolytic activity doesn’t play well with other blood altering medications so that’s worth checking.
 
Blazer95

Blazer95

..and we built castles in the Sky.
Messages
199
Location
Germany
This Just a emotional dumpster and does Not contain any big information:

I am really hyped Up for the HELP-Apheresis and excited that my pre-appointment for getting the Talk about possible Side effects will Take place in 3 weeks already

I cant believe i am actually doing it haha

FINGERS CROSSED i can move from moderate/moderate-severe to mild-moderate.

Imagine the possibilites: Me? Mowing a lawn? Ah the beautiful joys of a mild ME/CFS. How wunderful it could be. Doing very mild Yoga without crashing directly? Sign me Up! Haha

(I dont expect Remission and i try to be very realistic in my Goals)
 
Blazer95

Blazer95

..and we built castles in the Sky.
Messages
199
Location
Germany
Update: gotten apheresis today and i feel more unwell than baselined but Not horrible.

I Just feel Like "Something is Off"

Lets See how the next days will be Like. So far i am Not Crashed but all know the magical Roulette of PEM can kick in Up to 48h later so we'll see
 
Blazer95

Blazer95

..and we built castles in the Sky.
Messages
199
Location
Germany
Refering Apheresis:

I have been sleeping 9-10 hours each night since (usually i only get 6-7h) and i start to return to baseline.
I had a small energy boost this morning that allowed me to clean the shower a little bit. Now i feel worse but that was of course from the exertion.

In general i feel like the apheresis won't harm me long term but i dont really feel much benefits. I got these energy boosts randomly without apheresis aswell so its hard to tell if it came from that, or just because of the massive sleep amounts.

At the moment I found it OK to try, and I am thankful I gave it the try but I would consider it currently: Not harmful, but not worth the money.

Greetings, Blazer.
 
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