A diagnosis of ME was given not CFS whether there is any difference between the two is a topic for another day,and yes it was in China originally.
I originally suggested Rituximab as something worth trying and they agreed but suggest Friday I try IVIG and Plasmapheris, IVIG backfired and made me worse plasmapheresis helped greatly but only temporary.They had very few experience using Rituximab for ME if any at all,they believe it's a Neuro immune condition though as I do and since I am paying for it thought it's justified to try immune modulation treatment.
I'm not sure how long the infusions will last as they are split and it depends on how I feel after each one,if I get malaise or other negative effects we take a break but for this 2nd course should be 2-3 infusions max.
The doctor was using a dosage regimen which is recommended for autoimmune problems such as autoimmune anti NMDA encephalopthy,there was nothing about ME specific dosing.I would assume this came from pat experience and examples in the literature ?.
I had a full course of Plasmapheris prior to Rituximab so it is possible the intial slow improvement was due to that,and also everyone responds differently ,another reason could also be after plasmapheresis circulating levels of antibodies including the auto antibodies are lower so Rituximab will have a quicker effect as when the B cells are shut down there will be few new antibodies produced and you won't need to wait a lag time for the already circulating ones to be metabolized as they were previously removed via PP.
It's odd that it would take MAB 23 weeks to show improvements in Norway as the drug quickly and effectively reduced B cells and one gone it can take 3-5 months minimum for them to regenerate ,so they should have shown improvements way before that time.
One possibilitie could be since many people with CFS ME have different causes and varying processes driving the same syndrome and symptom list perhaps many of them did not have auto antibodies and if they did they are not
The anti NMDA ones which are what are driving my main issues ,thus varying responses to different auto antibodies and underlying processes should be expected both in terms of speed of response ,level of response ,side effects ect ,this also depends on the titre level of those auto antibodies and for me that had been greatly reduced by plasmapheresis prior to MAB.
Sorry for sowing confusion and irritating people, as the case may be.
I still don't have a very clear picture of your position. Was a diagnosis of ME/CFS given to you by the Chinese doctor/s? What Chinese term did he or she use to describe ME/CFS?
Did the doctor/s themselves suggest using Rituximab to you or did you suggest it to them? How much prior experience of using Rituximab in the treatment of ME/CFS did the doctor treating you have?
I did ask how many infusions you will be having, and how long a period the treatment will extend over. Where or from whom did the doctor treating you obtain guidance on such things as dosage, dosage interval and overall treatment period?
I am sorry I don't have any other examples for CFS so am unable to give any ,my goal with my treatment was to balance my immune system ,get rid of my auto antibodies and memory B cells.
My small improvements have been ,I have less headaches ,I can walk for 2 hours now instead of just below is before ,I don't get as much PEM,prior to treatment I would get flu like
Symptoms when I went pat my limit ,now even if I do break the limit a bit ill only get a mild sore throat slight pre cold feeling but nothing else,also I have less nerve twitching and fewer nightmares.
You say "Rituximab took me about one week to start noticing slow yet stable improvements". That's an extremely rapid response time, if the results of the Phase 2 Norwegian trial are anything to go by, when the mean lag time from the first Rituximab infusion until start of clinical response was 23 weeks.
Could you give us some examples, specifically in the field of ME/CFS?