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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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-2435315Did 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
I think you're right.I think I remember reading that @Martin aka paused||M.E. didn't have good results, is that right?
Thank you, 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
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.
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.
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.
No, I never re-tested without intervention in between.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.