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Hey all. I'm in the UK and I'm mostly house/ bedbound. All of my symptoms are immunological/ neuroinflammatory/ dysautonomic in nature. I've tested positive for b1, b2, M3 and m4 GPCR AABs and have sky high proinflammafory cytokines. I'm willing to travel anywhere in Europe for help, but I'm needing treatment and clinic recommendations for my particular presentation/ ME subtype. Big love to everyone struggling.
 

SWAlexander

Senior Member
Messages
2,125
proinflammafory cytokines
Plasmapheresis can be highly effective in removing thrombosis, circulating cytokines, and autoantibodies, offering short-term relief and helping to reduce the overall immune load. However, the real issue often isn’t just what’s circulating in the blood — it’s that the immune system can become trapped in a chronic cytokine activation loop. Even after a plasmapheresis "cleanout," the system can reactivate and return to an inflamed state.

This pattern seems especially common in post-viral syndromes, autoimmune dysautonomia, ME/CFS, and Long COVID, where the immune response becomes self-sustaining and dysregulated.

In my personal experience, I found that a more systematic, long-term strategy to reduce cytokines was more effective. For me, using antihistamines — specifically Cetirizine — helped noticeably in modulating the inflammatory response. The first benefit I noticed was improved sleep, which I believe is essential for proper immune system recovery. The latest lab results, after years, showed improvements in IgG, IgE, and IgM levels, confirming that my approach with antihistamines has indeed had a positive impact.
 
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Treeman

Senior Member
Messages
869
Location
York, England
I’m in the UK. There is a good and balanced video below on apheresis which is worth a watch


Here this company offer the service but expect to spend £10k -£15k for a recommended programme of treatment.

I had some noticeable improvements with the anti virals aciclovir and truvada. Which I concluded (but could be wrong 🤷🏻‍♂️) reduced cytokines and persistent inflammation.

I have tried many more things all without any noticeable benefit too. Good luck.
 

SWAlexander

Senior Member
Messages
2,125
It would be wise to test:
1743583412755.jpeg
 

SWAlexander

Senior Member
Messages
2,125
I asked what were your levels?
I asked what were your levels
Between 2020 and 2024, a total of 9 tests (ELISA)— including ANA and D-Dimer — consistently showed significantly elevated levels.
However, as of March 18, 2025, for the first time, all results have returned to normal ranges, with the exception of hemophilia markers, which remain elevated due to underlying lupus and antiphospholipid syndrome (APS).

In addition please read:

Contraindications​

Plasmapheresis has been contraindicated in the following patients: https://emedicine.medscape.com/article/1895577-overview#a4

Natural killer (NK) cell dysfunction in ME/CFS
https://www.meresearch.org.uk/natural-killer-nk-cell-dysfunction-in-me-cfs/

 
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Messages
4
Plasmapheresis can be highly effective in removing thrombosis, circulating cytokines, and autoantibodies, offering short-term relief and helping to reduce the overall immune load. However, the real issue often isn’t just what’s circulating in the blood — it’s that the immune system can become trapped in a chronic cytokine activation loop. Even after a plasmapheresis "cleanout," the system can reactivate and return to an inflamed state.

This pattern seems especially common in post-viral syndromes, autoimmune dysautonomia, ME/CFS, and Long COVID, where the immune response becomes self-sustaining and dysregulated.

In my personal experience, I found that a more systematic, long-term strategy to reduce cytokines was more effective. For me, using antihistamines — specifically Cetirizine — helped noticeably in modulating the inflammatory response. The first benefit I noticed was improved sleep, which I believe is essential for proper immune system recovery. The latest lab results, after years, showed improvements in IgG, IgE, and IgM levels, confirming that my approach with antihistamines has indeed had a positive impact.
Thanks for the input! I'm glad you found that Cetirizine helped. I've been taking fexofenadine for a couple of years now with no major changes except it controls my flushing from MCAS. I wonder if Cetirizine would be a better bet for me - I'll certainly give it a go. And I've been considering therapeutic apheresis, too. I'm just scared I'll spend all my money on something that might only last for weeks before my immune system goes awry again.
 
Messages
4
I’m in the UK. There is a good and balanced video below on apheresis which is worth a watch


Here this company offer the service but expect to spend £10k -£15k for a recommended programme of treatment.

I had some noticeable improvements with the anti virals aciclovir and truvada. Which I concluded (but could be wrong 🤷🏻‍♂️) reduced cytokines and persistent inflammation.

I have tried many more things all without any noticeable benefit too. Good luck.
Thanks for the links and info! I'm glad the antivirals helped you somewhat. I've also had some limited success with Aciclovir. I'll look into truvada. I have a gut feeling the apheresis would help me short term until my immune system returned to form. I agree with Jarred Younger.
 

SWAlexander

Senior Member
Messages
2,125
I have a gut feeling the apheresis would help me short term until my immune system returned to form.
Go for it if you think it could help — a patient in pain deserves every possible chance at relief.

Cort has the subject in his newsletter:

Plasmapheresis Possibilities for ME/CFS and Long COVID Pt. 2: Immunoadsorption, BC007 and H.E.L.P.
https://www.healthrising.org/blog/2...tigue-long-covid-immunoadsorption-help-bc007/

You may also read the comments there are addresses mentioned in Germany.
 

Carl

Senior Member
Messages
459
Location
United Kingdom
Your immune system is reacting to antibodies produced against the food that you eat which happens in ME & Fibro because of the compromise of the digestive barrier by pathogens.

Cordyceps Sinensis can be helpful to lower inflammatory cytokines and it can also help with energy. I prefer this variety over the Militaris type because it has significantly lower levels of Cordycepin which can lower COX-2 levels which can be damaging to the kidneys when taken in high levels. Militaris has around x1000 times as much of Cordycepin than the Sinensis variety.

A herb which has served me very well is Tu Si Zi/Dodder seed (Cuscuta Chinensis). It treats the HPA axis benefiting the pituitary gland and hypothalamus both of which are affected in ME. There are a big list of benefits to this herb some of which include it having antioxidant properties, anti cancer properties and is anti ageing. It also benefits fertility and hormone levels which can be affected in ME because of the destruction of tissue in the pituitary gland.
I have been getting it from the following site for many years because the price is the lowest that I have found except for one place which stopped selling to the public. They do sell it as a powder extract but I didn't find that much use so I stick to the herb and boil it twice for an hour instead of the normal 30 minutes and then mix it together when it has cooled. I take a mug twice a day. It is quite high in Quercetin. I didn't get any benefit from quercetin capsules but this does help me at least overall.
https://healthylicious.co.uk/tu-si-zi-dodder-seed.html

When I don't take this herb or I'm off it for more than 2 days I feel totally dead. It lasts in the body for about 2 days
 

SWAlexander

Senior Member
Messages
2,125
This study looked at the immune system in people with long COVID to see what might be different compared to people who had COVID-19 but got better without lasting symptoms.
https://www.mdpi.com/1467-3045/47/4/245
Key takeaway:
People with long COVID had more naive mature B cells (a type of immune cell that hasn’t been activated yet).
They had fewer transitional and double-negative B cells, which are usually involved in healthy immune responses.
Two cytokines (IL-5 and IL-13) were higher in the long COVID group, suggesting more immune system activity.
In other words, these cytokines (immune signals) may be contributing to ongoing inflammation, potentially leading the immune system to mistakenly target even healthy tissue.
 
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