I may have spoke to soon when I praised valacyclovir (generic Valtrex) for not causing me any side effects. Mild anxiety and insomnia are starting set in, as well as sexual side effects. I am considering cutting back to only one 1g tablet per day but I suppose I will stick it out with my current dosage for now and hope the side effects don't get worse.
It also seems that I might be "herxing" again from the valacyclovir. I've been getting waves of headaches and pain in my neck/brainstem. It sometimes feels like someone has driven a metal rod into the back of head and neck along the very upper part of my spinal cord.
I'm back down to 9 echinacea caps per day and am considering switching to Transfer Point beta glucan instead of NOW brand, as it seems from research to be a bit more powerful. I'm also considering restarting isoprinosine (Immunovir).
Overall, compared to a year and a half ago (before I started this treatment approach and blog), I would say I have seen a small improvement of about 15 percent. Most of this improvement came in the past 6-8 weeks--since starting the immune modulators.
A 15 percent improvement is nothing to write home about, unfortunately.
Due to my underwhelming response and being convinced that the XMRV hypothesis of CFS is the correct one, I'm strongly considering taking one or more HIV drugs that have been shown to inhibit XMRV in recent test tube studies. AZT is the cheapest, as it is off patent and available in generic, but its toxicity is infamous. I am also considering raltegravir, which was the most potent XMRV inhibitor tested to date, but the cost of $1000 per month could be a big problem. I was thinking a low dose of AZT to start off with (say 200mg per day, much lower than the 1500mg/day used in 1980s for HIV) might have the risk/cost/benefit balance that I'm looking for.
I realize I should wait for more studies, and I will, but the clock is ticking and I'm sick of waiting. Unless new research of high quality is published that contradicts XMRV hypothesis and changes my mind, I plan to start antiretroviral(s) by late summer.
Can you get a sympathetic doctor to prescibe these for you?
ReplyDeleteI'm sure that 99% wouldn't and it obviously wouldn't be covered by insurance.
However, if you try this I will be very interested in the results.
Good luck.
Mark
Thanks for the update. That 'metal rod' feeling has been a hallmark of my CFS experience, particularly if I try to push through brain fog of OI symptoms, the rods set in... not fun.
ReplyDeleteGood luck finding the medications you want to try.
D.
Before stopping Valacyclovir, it would be a great idea to stop other supplements like echinacea which can cause lot of troubles and interactions for no proven gain...
ReplyDeleteResearch does not support echinacea efficiency, particulary against EBV so I would stick with valacyclovir...
Maybe you can try artesunate and artemisin who have strong antiviral properties especially against CMV but maybe EBV too.
Aymeric, I don't plan on stopping Valacyclovir. I have thought about reducing the dosage to reduce the side effects, but they aren't severe enough for me to do that yet.
ReplyDeleteI've written about echinacea on my blog and while the research is not ideal I have already decided that it is something I want to take. I appreciate your comments though. I'll check the literature again just in case I might find something that changes my mind.
are you xmrv positive?
ReplyDeleteI have not been tested for XMRV yet. I do plan to get tested at some point as I probably will need a positive test result in order to persuade a doctor to prescribe me the antiretrovirals (raltegravir et al). I definitely think I have it though.
ReplyDeleteI agree with Aymeric. See my comment under your post about Echinacea. It may not be right for you at all, depending on your body type, your symptoms, etc., and strongly urge you to do some research on TCM medicine and yin/yang balancing.
ReplyDeleteGeneric Valtrex is the same exact medication as name brand Valtrex. The active ingredient in both is the same - Valacyclovir.
ReplyDelete