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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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Big news, pre-apheresis appt went good

Hi friends, long time no see!

Preparation Appointment at the HELP-apheresis clinic:
I must say my first appointment at the clinic where I will get the HELP-apheresis next week was nice.
He was incredibly careful not to forget anything to explain about this procedure, explaing possible side effects, what will happen etc. The doctor checked on my veins and even drew blood too make sure I have enough blood clotting factors to not get any troubles while doing the apheresis (it apparantly washes out some of the good blood clotting factores aswell so the value cant be too low he said, and he wants to be safe).

Everything looked very professional and not money hungry. Also price for the apheresis is 200-300€ lower then everywhere else so I asume I almost only pay for the filter material + some small medical fee on top.

New informations about my immune situation:
I have knew for longer that my Serum Amyloid A is elevated and my cd8 t cells and nk t cells are reduced but i could not connect the dots. yesterday I found out SAA works as a signaling molecule inducing multiple processes such as neutrophil stimulation and mast cell activity. My WBC is on the higher side when I am worse with low lymphocytes (high NLR ratio) so this actually makes sense. Also I get fast heartbeats and heart burn after eating pretty much any food so this could make sense on the mast cell activity thing (even though my mast cell blood test came back negative, I have read they might be not that reliable).

Further I found that my IFN-gamma is really supercharged high (TH1) but CD8-T-Cells and NK-T Cells are in the gutter wich didnt make any sense because usually a high IFN-gamma goes hand in hand with a high cd8-t-cell count.
but guess what TODAY i found out about a paper of immune exhaustion in ME/CFS linked to low cd8-t-cells counts and activitiy of these cells. I finally connected the dots and boom. I now think the ifn-gamma is elevated as a compensatory mechanism of my immune system trying to squeeze out as much cd8-t-cells as possible - wich is still not enough.
The idea is how do we fix that? Multiple approaches can be targeted here. Immune modulatory peptides, antivirals, antibiotics for bactieral persisters, lots of thinkable routes here.

Man I feel like I made a lot of progress in terms of finding out whats going on yesterday and today.
One step closer to understanding my illness. Babysteps but hey! We're still going and not dying yet :)

Greetings, Your Blazer from Germany.

Comments

Good to hear from you. I'm glad you've made such progress. I'm anxious to hear the results of your treatment.

Don't forget that a hiatal hernia, which I have, can account for heartburn with eating pretty much anything. It wouldn't account for the increased heart rate, though, that I'm aware of.
 
Good to hear from you. I'm glad you've made such progress. I'm anxious to hear the results of your treatment.

Don't forget that a hiatal hernia, which I have, can account for heartburn with eating pretty much anything. It wouldn't account for the increased heart rate, though, that I'm aware of.
Thank you :)
 

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Blazer95
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