Thanks for your input. The other thing I'm worried about, starting a treatment protocol on my own, is that I'll have a Herxheimer/IRIS-type reaction. I'm currently healthy enough to work full-time, and if I make myself too sick to work, even temporarily, I could lose my insurance and a great job. This almost happened to me with Valtrex just recently. I was on 1g, 3x a day, and experienced a major worsening of some symptoms about 6 weeks into the treatment. I had to take a week off work and was very worried that I'd made myself permanently sicker.
Actually, I have a follow-up question for you folks: does this response to Valtrex (I'm EBV IgG positive and CMV IgG negative) indicate that Valtrex might have been likely to help me in the long run (6-12 months)? I'm planning to ask Dr. Chia this question as well.
Yep, I had this type of IRIS response to acyclovir and valaycyclovir, made me unable to sleep etc. The difference was, I got it within a couple of days, and couldn't get anywhere near the 1 g dosage. It's a bit crazy because both acyclovir and valtrex are sold as over the counter products in my country, so they are considered safe medications in the short run at least, but apparently for a person with CFS/ME nothing is safe. FYI, I have also tried oxymatrine, and didn't have anything near as bad a reaction to it. I would say oxymatrine is a lot safer based on everything I've read from CFS/ME patients taking it.
Especially earlier on in my illness, I had 2 or 3 remissions that were directly after beginning to recover from a cold. They lasted 2-7 days, and then slowly my CFS issues would set back in over the course of a day or so. What do you think was going on when I had these several brief remissions? They had sudden onset, often during the middle of the day after a nap (napping due to a cold or the like). Is it possible my immune system "reset itself" from Th2 to Th1 mode due to the other infection, and this allowed me to recover momentarily until the problematic infection was the only one remaining and I stopped producing the right antibodies/Th cells? Could we replicate this with any immunomodulators?
Yep, I have this as well interestingly. I even started a thread about it here
. Last time I experienced it was last year with a cold, so the effect is still there for me. Unfortunately I only manage to catch a cold once in three years or so. The cold brings 100% remission of some of my symptom (brainfog, small fiber neuropathy, fatigue). Another way to get partial remission is to induce sleep deprivation. This is not as strong as the cold effect, but can lead to some very productive evenings. This happens to me typically after a night of 2 to max 3 hours of sleep.
Unfortunately, I have yet to manage to replicate either of these two experiences with taking supplements, and I have tried most of the supplements on this planet. Actually I'm currently looking at non-supplement therapies such as HBOT, VNS, TMS and grounding. From diet/supplement side I'm mainly planning on testing probiotics and intermittent fasting, the other supplements like herbs only tend to produce weak results, and even the weak positive effect disappears after a week or two.