Hi all - just thought I'd post an update on my treatment with Valtrex (valaciclovir).
In an earlier post I wrote:
"Whatever the lowest level of cautious optimism that exists as part of human consciousness, divide that by ten ... and that's where I am".
At that stage I had been on 1000mg a day for a bit over a month. As much as I am reluctant to allow myself a higher level of optimism (considering it's been 21 years of CFS - half my life, from age 21 to 42) there is no doubt this medication is helping. I am scarred by endless false starts with this illness ... but the rational part of me - carefully tracking symptoms etc - has to trump the cautious/superstitious part here! Details as follows (and see previous posts of mine in this thread):
I've now been on Valtrex for three months in total. (Comprising 1000mg for two months, then 1500mg for two weeks approx, then 2000mg {1000mg twice per day} for a bit over two weeks. I'll continue on the 2000mg; this is the dose my US doctor has had good results with. (I'm in Australia, but my treatment is being overseen by a US doctor. He contacted my local doctor, who is supportive and happy to prescribe the med).
There are clear improvements in:
- CNS sensitivity - less anxiety, sensitivity to noise/stimulus, improved mood.
- POTS - noticeable improvement here.
- Tolerance of cardio exercise. Hard to believe I would ever write this ... but there have been a couple of instances now where I have felt better after mild cardio exercise.
- I have put on weight/condition - (IE in a good way)
- Circadian rhythm has shifted back from its constantly delayed state - I'm waking up earlier.
- Libido and sexual function generally better
Negatives? No question the pros are outweighing the cons, but nothing's perfect. I think my poor GIT function is even worse on this med. Bloating and slow digestion is worsened. My suspicion is this could be to do with Gilbert's Syndrome (which I have). This is a liver condition, officially given 'benign' status by western medicine, but there are peer-reviewed articles (in the Lancet) disputing this. 'Non-specific' symptoms such as fatigue, mood issues, digestive issues etc seem to be regularly reported by sufferers, and there is the suggestion in the literature that Gilbert's is a predisposing factor for CFS. Gilbert's is a genetic condition; sufferers have significantly less of some of the liver enzymes involved in glucuronidation (part of phase two liver detoxification of various hormones, drugs etc). So - it may well be that adding this medication to already slightly compromised liver function could worsen digestion. Pure speculation, of course.
Sleep - I mentioned improved circadian rhythm, but sleep quality is still not always great. Often wake in middle of night and can't get back to sleep. My sleep quality was usually not particularly restorative anyway before the med .. but the waking up thing was less common ... so I think this is (at least partially) due to the med.
Cognitive clarity. Sometimes it's better ... but I think the sleep issues are compromising it. I couldn't remember for the life of me if I'd had a morning shower or not the other day. My girlfriend pointed out that I'd shaved, so I'd probably done that after stepping out of the shower! With that prompt, I was able to remember. So - safe to say my mind's not exactly a steel trap. More like a stale marshmallow surrounded by cotton wool. But we'll see what the future brings!
So - as I said - pros easily outweighing cons. I'll stay on this med and this dose for a while, and see what my doctor advises. I'm now calling this 'qualified, cautiously cautious, guarded optimism'. (!)
Will post another update down the track. Best of luck to all!
Stephen