Yes, I'll probably going to test the ASL titers, but perhaps in a few weeks, to see how they are after things have settled down. Some healthy people also have permanently elevated ASL titers, so the treatment might not have been necessary at all. But I think I had to try it, just to be sure it isn't the cause of the symtoms or some symptoms.
Regarding next steps, I am lucky to have a doctor in my family so I have all treatments available without need to travel.
I am probably going to try Valcyte first and see if there is a benefit. It may well be, because it has a broader spectrum than Valacyclovir, so maybe it is more effective against the virus that might be the cause of the symptoms and Valacyclovir was only partially effective (I'm still convinced I had a significant positive response to Valacyclovir).
If Valcyte doesn't work, I will probably try Rituximab thereafter. The thing there has been no known autoimmunity issue in any of my tests (and I had quite a lot).
BUT: The first patient Drs Fluge & Mella treated with Rituximab in their 2009 study also had no known autoimmunity, and the two other patients in that study had only one known autoantibody that could not explain the symptoms (Diabetes I and thyroid autoimmunity).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/
Also in his other studies, as far as I know, there was no clear indication that those patients with confirmed autoimmunity were responders and those without autoimmunity were nonresponders.
So the fact that I have not been tested positive for any autoimmunity may not necessarily mean that Rituximab isn't going to work.
It may be the case that Rituximab responders might have another autoantibody that is as yet unknown and can't be detected in lab tests. Then I might have that autoantibody or not, and the only way to find out would be trying Rituximab.
It may also be the case that the problems are not caused by an
autoantibody but instead by "normal" antibodies. For instance, the antistreptolysin antibody is not an autoantibody, it is produced against bacteria, not against own body tissue, but it can still attack own body tissue because some cells have a similar protein as the bacterium. This - if I understood correctly - was a theory of Prof. Edwards, who surmised that Rituximab responders' B-cells may produce too many low-affinity/broad spectrum antibodies that are causing disfunction inside the body, but are not actually autoantibodies.
Two findings make me suspect that maybe my CFS is perhaps not due to a viral infection, but rather an immunological problem: (1) No one can tell me why I have a HSV-1 IgG of >1:20,000 (normal is in the low hundreds), despite using high-dose Valacyclovir for 9 months. That's a big mystery and perhaps it's not really good to have this huge number of HSV-1 antibodies. And (2), as in your case, I don't get sick anymore. Last time I was sick with a flu or flu-like illness was exactly 4 years ago. That's strange and suggests that there is some kind of overactivation of the immune system, and possibly the B-cells.
Or (3) it is in fact a viral infection and it is caused by Epstein Barr and antivirals somehow don't help. Then with the B-cells you also kill the EBV, maybe more effectively than with the antivirals, and maybe in the end that's the reason why Rituximab is successful in a subset of patients even with no autoimmunity.
So there is reason to believe Rituximab might be worth trying. My main concern is that it might make me worse, for example if it is actually an infection and I am killing my B-cells and they were not the problem, but without B-cells I am even worse at controlling the infection, and this might very well make me worse.
In Germany we have the story of a famous soccer player who got severe CFS and tried Rituximab at the Charité and then got much worse to very severe CFS. The Charité henceforth declined to do any further Rituximab trials.
So that risk is real. It might not be a large risk in % terms. Only few patients seem to have reacted in that way, but it is definitely possible and it would be a risk I'd have to take if I try Rituximab.
The thing is, reading Dr Fluge/Mellas studies before the failed on 2017 is so encouraging. It reads like this drug can really help where nothing else helps. It's hard to believe that this was all coincidence or placebo effects. And then of course there are reports like yours, although I am well aware that you're not a typical CFS patient (maybe not even a CFS patient at all).
I will have to think about it, and maybe I am going to wait until the latest Fluge/Mella study is published. But right now I am leaning toward trying it.