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 :/

 

[kushami]

I happened across this blog post written by a Long COVID patient and thought it might fit with some of the discussion in this thread about venous oxygen testing:
https://mylongcoviddiaries.medium.c...ult-is-another-piece-of-evidence-1b427dcd6cdb

I haven’t read all of the posts, so I’m not sure whether she ended up having apheresis. The most recent post mentions a different treatment:
https://mylongcoviddiaries.medium.c...the-oxygen-returning-to-my-heart-f5e93907ae90

Edit: I slightly hesitated to post this because the person is taking a product, a supplement, and I would hate for anyone to rush out and buy it based on reading this, given that it probably still hasn’t been tested. But the information on venous oxygen testing seemed valuable.

 

[andyguitar]

Here is the label from the product it seems they took.......Herbs look interesting particularly the Sophora Japonica.

 

[kushami]

Cort wrote about some recent research on this topic of lower-than-normal oxygenation in venous blood here:
https://www.healthrising.org/blog/2...ammation-chronic-fatigue-syndrome-conference/

It’s the material under the first heading, “Brain metabolites”, which was presented at a conference. (I had a quick search on PubMed and could not find an article, so they may not have published this yet.)

 

[Aidan Walsh]

Here is the label from the product it seems they took.......Herbs look interesting particularly the Sophora Japonica.

I thought she only used one product, now there are more of these?