Is Apheresis an effective treatment for Long Covid and ME?

[Rvanson]

Apheresis filters your blood and directs it back straight into your own body, so I don't think you have to worry about blood banks

I was thinking of platletpheresis.

 

[tyson oberle]

In October I'll have an Apherese appointment in Mülheim.
Afterwards I'll tell you how it went...

How many treatments do you plan on doing? And how many days are you supposed to wait between treatments?

 

[tyson oberle]

There are no statistics. It's too soon to know for sure. I know of some ME patients trying it now, some feel a bit better some don't.
I’ll be having HELP next month in Mülheim and they found microclots and platelet hyperactivation in my blood.
From my point of view, the process is pretty safe but hard on the body. 3 to 4 hours treatment and many calories burnt. I'm expecting crashing afterwards and for what I've heard, a lot of pain on my arms.

I’m sorry I don’t have better news or more specific. We’ll have to wait I’m afraid.
Good luck with your treatment and please keep us posted!

Did you start the treatments yet? If yes, how are you doing so far and how many treatments do you plan on doing and how many days of waiting between treatments?

 

[FinRinTin]

Did you start the treatments yet? If yes, how are you doing so far and how many treatments do you plan on doing and how many days of waiting between treatments?

I start tomorrow with my first treatment,
Second treatment on Friday.
Then I decide if I repeat the treatment next week( also Tuesday and Friday).

 

[tyson oberle]

I start tomorrow with my first treatment,
Second treatment on Friday.
Then I decide if I repeat the treatment next week( also Tuesday and Friday).

@FinRinTin How are you doing so far? And before your treatments, did you ever get tested for microclots?

 

[FinRinTin]

@tyson oberle
Well... I've had two treatments.
Each treatment takes approximately three hours.

I haven't had massive side effects afterwards.
For two days I was feeling rather empty, tired and depressed.
So mostly emotional.

What has improved?
Beforehand something about my background.
I've got CFS for 10 years and in our community my illness level would be considered mild.

I'm able to work in IT but with great difficulties and limitations( no social life; no sport; no hobby's which involve leaving my couch).
If I avoid over-exertion my state is rather stable with the usual up-and-downs.

I've tried a lot of therapies and few had a sustained benefit:

• the first one was Wim-Hof-Breathing for reducing the feeling of being pumped up inside. As I've got POTS they are probably adrenaline spikes.
• the biggest benefits came when I tried the Keto diet two years ago. Before on photos I looked very sick and worn out; after starting a healthy pink came back ;-)
  I'd say that Keto has given me at least 20% more energy. This was registered by my wife and also my therapist.

How does Apherese fit into this?
Well.. the biggest benefits are on a cognitive level.
I work in IT as a developer and with CFS my biggest problem was my inability to remember a lot of things at once( short-term memory).
This has drastically improved.
It's not as profound as Keto but a nice improvement nonetheless.

But most of my other symptoms like low mood, inability to sleep without pills, sweating + freezing at the same time, backpain, sensitivity to noise, easily stressed, POTS, etc. haven't improved.

I've got another appointment in November and then I hope to talk with Frau Dr Jäger as she was absent when I was in Mülheim.

 

[Countrygirl]

I have heard from other patients that HELP apheresis improves cognitive problems first. Physical improvements follow.

 

[FinRinTin]

I have heard from other patients that HELP apheresis improves cognitive problems first. Physical improvements follow.

That would be great

 

[perchance dreamer]

I don't have any additional details, but my P.A. said that their clinic is treating patients who have long covid with Ketotifen. It's an antihistamine and mast cell stabilizer. Mast cell disorder is common in long covid.

 

[tyson oberle]

Hi @FinRinTin thanks for sharing your HELP Apheresis experience with us so far but we never got a response from you when I asked you on Oct 22 if you were tested for microclots beforehand? And have you done that November HELP apheresis treatment or treatments yet? If so, how did it go?

 

[FinRinTin]

@tyson oberle
I've been tested for microclots by Miss Dr Jaeger.
I don't think they treat you otherwise.
But in CFS the results aren't as obvious as in Long Covid.
I thought that my results wouldn't suggest an apherese treatment but Miss Dr Jaeger thought that it would

Therefore the clinical advice is crucial.
But in the end it's always a gamble with CFS treatment.


Regarding your second question: I've had two treatments( Post #826)

 

[Woozy]

I know they have found microclots in the blood but doesn't everyone on the planet have microclots in their blood?

 

[LongCovidOli]

Dear all
I would love to hear about your experiences (from yourself or people you know) with Apharesis, especially H.E.L.P. Apharesis and Immunadsorbtion.
Did you try it yourself? Or somebody you know?
Which of the treatments, when, and how long where you ill before?
Has it helped?
And most important: Has it maybe WORSENED your illness? Because that is what I'm most scared of.
I might wanna try one of these two treatments, but the one thing I want to avoid is a permanent worsening (that persits longer than a few weeks).
If it won't help and just cost me a lot of money... so be it, it would be bad, but not as bad as wosening of my condition.

So I know there are some stories of your experiences here, but forgive me that I currently can't read it all, I'll try, but my brainfog is a real issue currently.
So I would love to get some updates of those who tried one of these two treatments in the last couple of months or so (or more of course).
please share your stories!

Thank you very much!!
Oliver

 

[LongCovidOli]

Dear all

I would still love to hear about your experiences (from yourself or people you know) with Apharesis, especially H.E.L.P. Apharesis and Immunadsorbtion.

Did you try it yourself? Or somebody you know?
Which of the treatments, when, and how long where you ill before?
Has it helped?

And most important: Has it maybe WORSENED your illness? Because that is what I'm most scared of.
I might wanna try one of these two treatments, but the one thing I want to avoid is a permanent worsening (that persits longer than a few weeks).

If it won't help and just cost me a lot of money... so be it, it would be bad, but not as bad as wosening of my condition.

So I know there are some stories of your experiences here, but forgive me that I currently can't read it all, I'll try, but my brainfog is a real issue currently.
So I would love to get some updates of those who tried one of these two treatments in the last couple of months or so (or more of course).
please share your stories!

Thank you very much!!
Oliver

 

[Guwop2]

What is NAC treatment as mentioned here, and is it easily available? Will I need to see a private doctor to have them prescribe the treatment?

 

[junkcrap50]

What is NAC treatment as mentioned here, and is it easily available? Will I need to see a private doctor to have them prescribe the treatment?

NAC = N-Acetyl Cysteine. You do not need a doctor. It is a supplement that can be bought online in many places: amazon, supplement stores. (I do not know of it's availability in the UK. In the US, there is some regulatory effort to ban it, but it hasn't happened yet).

Dear all

I would still love to hear about your experiences (from yourself or people you know) with Apharesis, especially H.E.L.P. Apharesis and Immunadsorbtion.

Did you try it yourself? Or somebody you know?
Which of the treatments, when, and how long where you ill before?
Has it helped?

I'm sorry you haven't had any success with getting any responses. I only know of one person, @Martin aka paused||M.E. (I can't tag him for some reaason), who tried it for ME/CFS and he didn't notice anything if I recall correctly. He isn't on PR much these days and is mostly on Twitter and working on his Non-Profit. Phoenix Rising in general seems to have gotten less activity in the past year. There is this post where Martin discusses his experience doing HELP Apheresis, which you might be interested in: https://forums.phoenixrising.me/threads/martin-aka-paused-and-h-e-l-p-treatment.86184/
And here's another with a video interview of him (but not sure what is discussed; I haven't watched it. So it might be just overview explaining what aphersis is and why it's being tried in LC/ME/CFS.): https://forums.phoenixrising.me/threads/excellent-german-video-with-english-subtitles-on-long-covid-and-me-and-help-apheresis-starring-martin-of-pr.88082/


You might have to skim through all 40 pages of this thread to find other people who have tried it. But your best chance to find people who have done it would probably be Facebook Groups for Long Covid and even some specifically for Long Covid and Apheresis. Other places to look are Twitter, Reddit groups (/r/covidlonghaulers, /r/longcovid, /r/vaccinelonghaulers, etc.), and possibly Discord. You'd obviously have to use search thoroughly. You can try searching PhoenixRising too, but the normal search is pretty unhelpful. Use the Google Search feature for Phoenix Rising, which is much better: https://forums.phoenixrising.me/pages/google-search/ .

 

[Consul]

https://www.healthrising.org/blog/2023/05/06/apheresis-long-covid-chronic-fatigue-syndrome/
So someone in Germany have been doing this stuff since 2009 on 1111 me cfs patients with seemingly good results. No control population but thats alot of treatments to perform if there is no real signal.

 

[hapl808]

So someone in Germany have been doing this stuff since 2009 on 1111 me cfs patients with seemingly good results. No control population but thats alot of treatments to perform if there is no real signal.

I'm always skeptical of the vague good results. Seems like the 1,111 study sounded great but the more rigorous follow-up did not? And a lot of these studies don't have placebo groups which is tough when you have illnesses that sometimes improve on their own.

Every physician I've ever talked to who specializes in ME/CFS type illnesses has always been very confident in their ability to improve my condition. Almost none of them have done so (and one harmed me greatly), although to be fair I skipped over many of them after speaking to some of their patients who did not have the results the physicians claimed.

 

[tcamde]

I am part of a facebook group about help apheresis in long covid. There is a survey of about 20-25 people that already had the HELP treatments. The results are as follows:

45% long-term big improvement
5% long-term small improvement
18% short-term small improvement
14% no changes
18% got worse

Keep in mind these are results for long covid not me/cfs.

 

[tyson oberle]

I am part of a facebook group about help apheresis in long covid. There is a survey of about 20-25 people that already had the HELP treatments. The results are as follows:

45% long-term big improvement
5% long-term small improvement
18% short-term small improvement
14% no changes
18% got worse

Keep in mind these are results for long covid not me/cfs.

I personally would only do HELP apheresis if it showed that I have microclots. A lot of people who did this treatment didn't even get tested for microclots.