Thanks for sharing the cause of your illness
@Shawn Im glad you figured it out so quickly. Ive been following this thread. Id be keen to get the neuronal antibody testing but Im too unwell to travel to Shanghai. Unfortunately the health system here in New Zealand is similar to the NHS. Ive had nothing but pretty standard testing since I first got ill and have been treated poorly by most Drs. Ive had all the physical symptoms youve mentioned and more plus panic attacks since the onset of my illness and DP, DR on and off and a couple of periods of psychosis aswell. Before the onset I was very fit and mentally well.
@ebethc The research on lack of immune response to EBV in people with ME is interesting to me, as when I first had EBV (according to one Paul Bunell) I had no IgG or IgM EBV antibodies and this continued any time I got tested for at least six years after. I think that would suggest a lack of immune response, unless the Pual Bunell was a false positive. I dont know how common that is.
Do you know anything about what an IgG level for CMV would be for it to be considered active? As mine is always raised and wondered if that could be a partial cause for my ME
Unless I read wrong you said you had a poor immune response to EBV and despite having the virus were unable to get detectable IGG or IGM readings,this really made me take notice as this is EXACTLY what happened and is happening with my HSV 2 infection and what I found out was the reason for this was my body did not produce the Correct antibodies for HSV 2 and instead produced a cross reactive auto antibody that hits the virus and my own tissue as well thus making me sick,this sounds exactly what is happening with you ,my HSV type 2 continues to be negative despite Previously having the virus confirmed by a DNA lesion Swab,before at best I get an equivocal result but never positive,it's amazing how doctors in there cruel ignorance never take notice of these subtle yet extremely important markers.
I would focus on this finding if I was you.
believe me before I got this shit figured out I was abused and ridiculed by doctors ,it hurt me deeply and made me resent and hate anyone in a white coat despite my immense suffering I was cast away like an unwanted menace ,a once proud Photographer with a large following ,a respectful job beautiful girlfriend and a bottle full of dreams,I wiahed to have AIDS or cancer as sad as that sounds so that I could be treated with empathy and respect ,I found out what was wrong with me because I never gave up and went through literal hell and back to get to this point and I never once let the hurtful dismissals those narrow minded devils gave me to force me to lay down and accept an "existence" over a life.
Now about your raised CMV stuff this is also what I am experiencing ,no antibodies to HSV 2 for the reasons I mentioned previously yet elevated CMV and HSV 1 and EBV antibodies at 1:340 and 1:400 here is the theory the Neuro immune specialist here thinks that explains this.
Just say an average person has the common level of IGG titre for a latent virus of say 1:20 a titre of 1:380 would be a 18-19 fold increase (which many with CFS have ) now the cut off mark for auto and Normal antibodies to become clinically relevant is around 1:4 ect ,so let's say we had an autoantibody in our system that was below the clinical threshold marker at 1:1 after a triggering infection and humoral B cell dominant dysfunction this titre as with all the other titres would increase 18 fold also,which would bring it up to around 1:20 or in some 1:30 1:40 which is way past the threshold for auto antibodies to produce clinical symptoms,during times of infection and high stress these auto antibody titres could rise even more.So the auto antibodies which many people carry below positive testing thresholds were only able to produce clinical disease sue to a massive runaway up regulation of the humoral side of the immune system in short : uncontrolled antibody production and B cell dis regulation.
This theory is solid and is in fact commonly found in people with strange diseases like ours.
As for me ,I want my immune system reset and wiped out with cycophlasphamide ( I posted a John Hopkins video about this earlier in the thread) so it can re generate from scratch,this dysfunction won't fix itself without intervention and auto antibodies making us sick is just a marker sign of an underlining serious immune dysfunction.
My immune system is totally out of whack but insertingly I don't have over productions of antibodies for bacteria infections,I wonder if with you it's also this way? So it's the humoral viral side of my immune system that deals with viruses that has went AWOL.
Below I have attached a copy of my viral reports ect infectious stuff ,notice my HSV 2 is still not positive,this blood test was done after 3 plasmapheresis sessions before the PP my CMV titre was 1:340 and HSV 1 1:327 and EBV 1:352 now it's down to 1:30 which is still above most normal people's titre "despite" being after 3 PP sessions.Now I had quite high titres before my triggering infection (not this high though) so it could be a sign of a predisposition for an immune system which will easily go out of whack in future with the right trigger.Also take note of the "negative" viral DNA tests which means despite what many people on PR worry about its most likely bornthe virus causing such titres it's simply an out of whack humoral immune system which can make people very sick indeed.
It's a pity I can't tolerate Rituximab as my immune system ( most likely T cells) attack and consumes it as it is after all a foreign protein with murine elements included,I probably could have got away with suffering that kind of immune response before my immune cells for some reason moved into my brain because now any systemic reaction also causes an inflammatory reaction within my nervous systems which obviously includes the CNS and I don't need to explain just how much that could drop my baseline down.
Sad indeed...I'll have to go down the chemical route abeit carefully,I think RTX out of all immune modulators is the most safe as it leaves other elements of your system alone except B cells and it's not very toxic.
