Is Apheresis an effective treatment for Long Covid and ME?

[TracyD]

Did anyone on the site actually try some form of aphersis treatment? Thanks.

Out of desperation, I tried INUSpheresis in Frankfurt recently. The treatment itself cost almost $6000, plus the travel. I had two sessions, with two days between them. I felt normal (not sick) after the first treatment, and this continued for three days - that is, though my return to the U.S. Since then, my ME/CFS symptoms have been worse than before I left. This downturn is possibly due to an infection, but the upshot is that the apheresis didn't improve me durably enough for me to try it again. (However, it was nice to feel okay for a few days!)

 

[TracyD]

If, despite my experience, someone is interested in INUSpheresis, here is a partial list of providers and the prices, in Euros, that they quoted or had on the websites:

• Frankfurt area
  • https://www.ganzheitliche-arztpraxis-kronberg.de/kontakt/
    • 4900 EUR
  • https://hausarzt-sachsenhausen.de/kontakt/
    • 5200 EUR + labs
• Zaragoza
  • https://biosalud.org/contacto/
    • 10,000 EUR
• Hamburg
  • https://biologicum.info/en/thank-you/#contact-Form-481
    • 5960
• Berlin
  • https://www.eller-kellermann.de/en/inuspherese/
    • 5500
• Cham
  • https://www.inusmedical.de/kontakt/
    • 5600 plus checkup before making appt
• Tittling?
  • https://www.inuspheresezentrum-tittling.de/indikationen/
    • 5900 EUR plus
• Munich
  • http://www.burn-out-muenchen.de/dr-hierl/index.html
    • 5320, plus EKG & maybe labs
• Athens
  • https://inuspheresisathens.com/thank-you-contact/
    • 5600 EUR
• Stuttgart
  • https://umi-stuttgart.de/terminvereinbarung/
    • 5200, includes EKG, etc.
• Baden-baden
  • https://biologicum-baden.de/inuspherese-als-umweltpherese
    • 5100
• Dusseldorf
  • https://privatpraxis-golo-mielke.de/
    • 5500 plus
• Arnsberg
  • https://www.marionazizi.de/apherese-arnsberg
    • 5800
• Koln
  • https://www.drkraft-vital.de/en/contact
    • 5500-6000

 

[SWAlexander]

Thanks for the info, but no, thanks.
Apheresis may clean up some infected fibrin circulation in the blood, but it will not change the cause of inflammation.

 

[Treeman]

Out of desperation, I tried INUSpheresis in Frankfurt recently. The treatment itself cost almost $6000, plus the travel. I had two sessions, with two days between them. I felt normal (not sick) after the first treatment, and this continued for three days - that is, though my return to the U.S. Since then, my ME/CFS symptoms have been worse than before I left. This downturn is possibly due to an infection, but the upshot is that the apheresis didn't improve me durably enough for me to try it again. (However, it was nice to feel okay for a few days!)

Thanks for that. I have an ongoing infection too. Until I can stop that there's not much point in trying it.

 

[Sizzle]

I do believe it would be a good idea to stop talking about the different kind of Apheresis treatments as if they are the same. INUSpheresis doesn't add heparin AFAIK

 

[Aidan Walsh]

I would look into Nutcracker Syndrome & rule this entirely out prior to spending money/travels. Doppler Ultrasound, veno scans, urine for blood, proteinuria

 

[Aidan Walsh]

Doctor GP/UK/Patient/Student/Author Nutcracker Syndrome

 

[Guwop2]

Out of desperation, I tried INUSpheresis in Frankfurt recently. The treatment itself cost almost $6000, plus the travel. I had two sessions, with two days between them. I felt normal (not sick) after the first treatment, and this continued for three days - that is, though my return to the U.S. Since then, my ME/CFS symptoms have been worse than before I left. This downturn is possibly due to an infection, but the upshot is that the apheresis didn't improve me durably enough for me to try it again. (However, it was nice to feel okay for a few days!)I

I appreciated the feedback on your treatment. Im sorry it made you feel worse, hopefully it may just be a temporary downturn. Ive had bad responses to treatment that have lasted as long as 10 months, but i eventually got back to baseline. I dont think ill be trying this treatment though; very expensive and considering how sensitive I am to things it may do me more damage than good.

 

[TracyD]

I do believe it would be a good idea to stop talking about the different kind of Apheresis treatments as if they are the same. INUSpheresis doesn't add heparin AFAIK

Definitely, there are different types of apheresis, but I received heparin during the INUSpheresis.

 

[inozz]

In October 2022, I asked other patients who received the same treatment at the same clinic in roughly the same time frame (we have a shared Facebook group)

could you please share a link to this group?

 

[godlovesatrier]

Really good post here about triple therapy with images before and after as well:

https://www.reddit.com/r/covidlonghaulers/comments/10p2qvt

In the last two weeks I have started to experience exhaustion, fatigue and weakness and more recently pulsatile tinnitus. Could be anything but blood flow issues is one of the things I am thinking it could be. Tried aspirin with lactoferrin and felt like it got rid of my coat hanger pain, but sadly I had a bit of a funny reaction to aspirin, makes me feel sick and just generally achy and unwell. I seem to be allergic to bloody everything! Was not like this pre ME diagnosis tho.

Anyway I'm taking nattokinase as I know that's fine for me to take. But I'd like more options :/