Is Apheresis an effective treatment for Long Covid and ME?

[SWAlexander]

Cori cycle.

https://forums.phoenixrising.me/threads/new-article-on-long-covid-fatigue.90619/#post-2441603

 

[Treeman]

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

 

[lenora]

No, I haven't tried apheresis and chances are 100% that I won't. Too tired to seek it out. Yours, Lenora

 

[Judee]

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

I think Martin aka paused||M.E. went for a treatment or two. Also iirc @Luxintenebrislucet went to Spain to have it done. https://forums.phoenixrising.me/threads/help-apharesis-in-cyprus.90181/#post-2435315

 

[lenora]

Hello @Judee.....The last time I saw Martin, he really didn't look too good so I assumed his treatments hadn't helped. He's been wonderful for us, though, but I must say I'm sorry if the treatments didn't work. If there was any improvement, then I'm one happy old chick. I hope you're doing OK. Yours, Lenora

 

[Treeman]

I think Martin aka paused||M.E. went for a treatment or two. Also iirc @Luxintenebrislucet went to Spain to have it done. https://forums.phoenixrising.me/threads/help-apharesis-in-cyprus.90181/#post-2435315

I think I remember reading that @Martin aka paused||M.E. didn't have good results, is that right?

 

[Judee]

I think I remember reading that @Martin aka paused||M.E. didn't have good results, is that right?

I think you're right.

 

[FinRinTin]

I did 4 treatments( 2 in 2022 and 2 in 2023).
The big and only improvement is cognitive.

My working memory is improved and I am better in my job in IT.
But if I overwork my energy envelope I'm punished as always.

After the last session some months ago I've decided to stop altogether as there was no cumulative effect.
On the plus side the improvement remained (even after pausing for months without treatment).

As we are used in Germany to get most medical treatments for free, paying for each apherese session 1300€ is a lot of money.

Moreover there are very few places where you can get this treatment.
And in Osnabrück they've only allowed my treatment because I've been beforehand to Dr Jaeger in Mühlheim.
They fear negative outcomes for CFS patients doing this treatment.

 

[lenora]

Hello @FinRinTin. I'm glad that you at least had cognitive improvement...a huge plus for any of us.

Yes, I'm sure that when you're used to socialized medicine that 1,300E (not right, I know, but no key for up-to-date information), is a lot of money. Especially if you're no longer seeing any additional improvement. I think I'd feel the same way.

Do you know the Martin I'm referring to? If so, how is he and tell him that everyone at PR sends him their best wishes, as we do for you. Keep on goin'! Yours, Lenora

 

[FinRinTin]

Hello @FinRinTin. I'm glad that you at least had cognitive improvement...a huge plus for any of us.

Yes, I'm sure that when you're used to socialized medicine that 1,300E (not right, I know, but no key for up-to-date information), is a lot of money. Especially if you're no longer seeing any additional improvement. I think I'd feel the same way.

Do you know the Martin I'm referring to? If so, how is he and tell him that everyone at PR sends him their best wishes, as we do for you. Keep on goin'! Yours, Lenora

Thank you, Lenora.
I know Martin from this forum, a TV documentary he was included in and I'm following him on Instagram.
His channel there is "paused_me".
Unfortunately he hasn't improved much but is in a relationship. and does a lot of media work for CFS.

 

[lenora]

Thanks @FinRinTin. I'd been wondering about Martin and I'm really sorry that he never saw an improvement. He has tried so hard.

Glad to hear that he's still in his relationship with that lovely woman. I hope you're doing fairly well, also. Yours, Lenora

 

[Osaca]

I’ve heard from a patient that Dr. Beate Jäger is now "looking at" viral persistence and wants patients to flush their gut with colon hydrotherapy and inject ozone in the rectum. That should say enough about where she sits scientifically/medically…

 

[tcamde]

I did 5 treatments in HELP apheresis in Potsdam, Germany.
I was already sick with long covid for 2 years and my bell score is around 20.

The first treatment had a noticable effect. Immediately after the treatment my pulse was 10-20 bpm lower than before but this only lasted for the same day. I had a slight increase in the number of daily steps I could walk from 1,800 to 2,200.
Sadly the following treatments did not come with further improvements. The slight increase in steps lasted for 3 months but I am now back at 1,800. I am not sure if this remission was caused by bad pacing or if the effect of the treatment wore off.

In summary it did have a small but not lasting effect. Not worth the cost in my case.

 

[tommybrand]

The first treatment had a noticable effect. Immediately after the treatment my pulse was 10-20 bpm lower than before but this only lasted for the same day.

In summary it did have a small but not lasting effect. Not worth the cost in my case.

I have a similar experience. I was the first patient at the Long Covid Clinic (later renamed to Apheresis Center) in Larnaca, Cyprus.

I completed 4 apheresis sessions. The following 24-hours after each session I noticed rapidly improved eyesight (improved peripheral vision especially) as well as a great reduction in heart rate. If I recall correctly I had a decline from 90-100 to 50-60 bpm. And slept incredibly well after each session. But apheresis still gave me PEM.

Apheresis and HBOT sessions did seem to help my cognition somewhat, but the last year it has gotten worse again. HBOT also triggered DPDR for me which I have not been able to resolve with therapy.

—

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). Most of them were doing a combination of HELP, HBOT, ozone IVs, and double or triple anticoagulant therapy. Most of them are LC or injured from vax.

Some figures;
- Poll was seen by 86 people
- Poll was answered by 28 people
- 78% reported improvement (22 votes)
- 17% reported no change (5 votes)
- 3% reported worsening (1 votes)

Not a very scientific study per se, but I’m pretty sure many of those 22 votes would decrease to no change or worsening today. I could maybe start a new one and see if people would still respond.

If I could afford it I would likely take a new round of apheresis, but maybe 10-15 this time as it certainly did something, but not enough of whatever it does. I also think 4 treatments was insufficient, but at a cost of over €1300 per treatment I couldn’t risk it financially.

 

[Treeman]

summary it did have a small but not lasting effect. Not worth the cost in my case.

could afford it I would likely take a new round of apheresis, but maybe 10-15 this time as it certainly did something, but not enough of whatever it does. I also think 4 treatments was insufficient, but at a cost of over €1300 per treatment I couldn’t risk it financially.

I have a theory why it may over time return to its previous poor state.

The, "something in the blood" be it inflammation or auto antibodies etc. are cleaned out, but if the body is still producing them over time they will return and so will the fatigue etc.

It's good to see that it does show some improvements but equally puzzling that it doesn't persist with some.

p.s. at Larnaca it's now €1695 a time.

 

[Treeman]

First clinical results after HELP apheresis in Long COVID Syndrome
(#59)

Dr. Gunnar J. Bücker1, Dr. Marcella Bürkner1, Dr. Lutz Fricke2, Prof. Christel Weiß31
Nephrology group practice, Osnabrück, Germany; 2
Nephrology group practice, Bochum, Germany; 3
University of Heidelberg, Department of Medical Statistics, Mannheim, Germany

Long COVID Syndrome (LC) is a new and complex disease lacking an established treatment so far. First reports portray HELP apheresis (HELP) as a promising therapy in LC. Since 2021, we have offered HELP in two practices and treated 120 patients so far. Our objective was to evaluate patients` response to HELP in LC.

Method: The patients‘ response to the HELP has been evaluated by means of a questionnaire checking for
symptoms before and after apheresis, as well as the current state of symptoms. The intensity of symptoms was depicted in a five-tier Likert scale ranging from 1 (bad, very pronounced) – 5 (very good, asymptomatic). Inclusion criteria: LC, at least 2 sessions of apheresis in 2022. Exclusion criteria: pre-existing ME/CFS, Post Vac-Syndrome. The questionnaires were issued to 64 patients (Osnabrück 48, Bochum 16). In total 31 responses (OS 26, BO 5) have been analysed so far. Statistical significance was assessed by Friedman test and Wilcoxon test for paired samples. A test result was considered as statistically significant for p less than 0.05. Subsequently, the median of results is presented.

Results: The patients were aged between 18 and 78 years, with an average of 41 years. 18 of 31 participants are female. The overall rating increased from a score of 2 (range 1 – 3) before apheresis to 3 (1-5) after apheresis and to 4 (1.2-5) currently. Comparison of symptoms before and after HELP shows a significant and sustained alleviation of symptoms (p < 0,0001). Further improvement after HELP compared to the patient’s current situation was not statistically significant. The evaluation of specific symptoms resulted in similar observations: patients’ general condition, walking restriction, dyspnoe, chest pain, POTS, PEM, brain fog, insomnia, fatigue and depression improved significantly. The median number of treatments per patient was 5 (2-7). The median duration of symptoms before treatment was 10 months (2-23), follow-up after apheresis was 6.5 months (1-10). Side effects were limited to 1 out of 144 treatment sessions, which resulted in a patient suffering from low blood pressure. 83 percent of the patients would recommend the treatment. Two relapses were noted after a new COVID infection. No worsening of symptoms has been reported after the procedure.

The given findings show a high response rate with significant clinical improvements and long-lasting results. Thus, HELP seems to be a promising and safe treatment option for patients suffering from LC.

 

[tommybrand]

I have a theory why it may over time return to its previous poor state.

The, "something in the blood" be it inflammation or auto antibodies etc. are cleaned out, but if the body is still producing them over time they will return and so will the fatigue etc.

It's good to see that it does show some improvements but equally puzzling that it doesn't persist with some.

I have high scores on ME/CFS and LC auto-antibodies that are detected by Celltrend. I wish someone did a test before and after HELP Apheresis to see if it changed the auto antibody count, as I’m quite certain it would reduce those.

 

[tcamde]

I have high scores on ME/CFS and LC auto-antibodies that are detected by Celltrend. I wish someone did a test before and after HELP Apheresis to see if it changed the auto antibody count, as I’m quite certain it would reduce those.

I actually tested autoantibodies with E.R.D.E before and after HELP apheresis.
I had 5/7 autoantibodies positive and directly after the 5th help apheresis it was 3/7 autoantibodies. So I think it filters some autoantibodies but not all and for many the ones filtered out might just come back after 1-3 months.

 

[Osaca]

I actually tested autoantibodies with E.R.D.E before and after HELP apheresis.
I had 5/7 autoantibodies positive and directly after the 5th help apheresis it was 3/7 autoantibodies. So I think it filters some autoantibodies but not all and for many the ones filtered out might just come back after 1-3 months.

Did you ever have 2 of the same tests without interventions inbetween? It seems the natural variation amongst these tests is already very high on an individual level.

 

[tcamde]

Did you ever have 2 of the same tests without interventions inbetween? It seems the natural variation amongst these tests is already very high on an individual level.

No, I never re-tested without intervention in between.