I'm definitely starting to notice less fatigue from little trips out and haven't really suffered from any PEM for a few days (the PEM would normally be mild, or if I had crashed it would of course be a lot worse - even if the crash only lasted 3 days which was common with the joshua liesk protocol).
On Friday evening I drove to the other side of a city near where I live which was a 25 min journey and then essentially drove all the way back - whilst also going into the Sainsbury's supermarket. My eyes were incredibly tired most of last week, just SO tired. But that seems to have gone today (Sunday). Sadly I had an attack of IBS on the Friday evening about 9pm which lasted pretty much most of the day on Saturday! So that sort of messed up my mental picture of how well I was doing on Famvir. The IBS was from some chilli food I ate, which has happened a few times before but this attack was WAY worse. Anyway I am very glad it's over.
In January I started cooking chicken soup using this recipe: https://omnivorescookbook.com/herbal-chicken-soup/ minus the astragalus and chinese herbs.
I found after a week or so that it had eradicated my flatulence completely. But also I hadn't had any outbreaks of IBS and foods were easier to eat. And then I stopped it about a week ago and at the end of that week I then had a bad attack of IBS. This has happened twice so there does appear to be a trend. I guess the broth from the chicken bones combined with the ginger and garlic etc combine together to sooth and heal my intestinal wall - of course it's also anti microbial which is probably quite important I think in many ME patients. As with our dodgy immune systems microbes tend to get a foot hold. Also when I started living with my gf who's now my long term partner, I ultimately ate differently, not only did I get more IBS attacks due to varied food but I also stopped eating fresh garlic regularly which ultimately brought the intestinal issues back.
So as soon as I had a big bowl of that (I drink all the fluid from the soup) I felt almost instant relief (I guess it took a full hour or two to feel 70% better) and by the time I woke up thismorning I was eating and drinking just fine. You know it's bad when water upsets your stomach!
--
Today I took my usual dose and went for a drive, at the moment disorientation and longer reaction times are an issue when I take famvir, but that could easily be the antiviral hitting infected cells deeper in tissues, in the CNS or in the brain (as it crosses the BBB). So I am hoping this will calm down with extended use.
I feel pretty good thisafternoon, haven't really had any fatigue or PEM from earlier in the day, but I tend to notice I don't feel strong enough to go for a walk or whatever until about 5 or 6pm. But until I can go for a 20 minute walk without dizziness, ultimately it won't be any better than I was last summer.
One thing to state is that I've stopped taking the glycine/choline/b5 mix today and have not noticed any difference. Normally I'd notice a difference very quickly with enhanced fatigue when I miss a dose. But the famvir seems to have taken over. Considering the glycine is meant to reduce OS and fix glycosis which is messed up by several herpes viruses, I find it interesting that I can now stop taking something I relied quite heavily on before.
It's still early days, if you don't count my 2 day famvir break, this is actually day 13 on Famvir. Hopefully by day 30 I'll have some sustained benefits with my worst symptoms improving and energy envelope increasing.
Side effects:
1. Insomnia is pretty bad, I am trying lots of things to fix that, mainly moving doses around. I've ordered doxepin simply so I can sleep, as benadryl is not doing me any good at all. I think I will take 5-htp with the valerian and melatonin and cbd oil in the meantime. But last two nights I've prob only had 6 hours. Funnily enough Heapsreal takes what I take and he's the same.
2. Grumpy, impatient, snappy. The drug after dosing can make me impatient and very snappy, I get into arguments easily. Thankfully this hasn't been an issue at work, which is probably a good thing. It's not as bad as it was on ginseng which is the important thing.
3. Disorientation after dosing - hoping it's just some sort of herx.
I also no longer need to rely on my probiotic for energy, although realistically if I were to stop taking it it takes 2 weeks for me to go downhill before I realise the probiotic is what I need to get back to basics. So I won't be stopping this.
On Friday evening I drove to the other side of a city near where I live which was a 25 min journey and then essentially drove all the way back - whilst also going into the Sainsbury's supermarket. My eyes were incredibly tired most of last week, just SO tired. But that seems to have gone today (Sunday). Sadly I had an attack of IBS on the Friday evening about 9pm which lasted pretty much most of the day on Saturday! So that sort of messed up my mental picture of how well I was doing on Famvir. The IBS was from some chilli food I ate, which has happened a few times before but this attack was WAY worse. Anyway I am very glad it's over.
In January I started cooking chicken soup using this recipe: https://omnivorescookbook.com/herbal-chicken-soup/ minus the astragalus and chinese herbs.
I found after a week or so that it had eradicated my flatulence completely. But also I hadn't had any outbreaks of IBS and foods were easier to eat. And then I stopped it about a week ago and at the end of that week I then had a bad attack of IBS. This has happened twice so there does appear to be a trend. I guess the broth from the chicken bones combined with the ginger and garlic etc combine together to sooth and heal my intestinal wall - of course it's also anti microbial which is probably quite important I think in many ME patients. As with our dodgy immune systems microbes tend to get a foot hold. Also when I started living with my gf who's now my long term partner, I ultimately ate differently, not only did I get more IBS attacks due to varied food but I also stopped eating fresh garlic regularly which ultimately brought the intestinal issues back.
So as soon as I had a big bowl of that (I drink all the fluid from the soup) I felt almost instant relief (I guess it took a full hour or two to feel 70% better) and by the time I woke up thismorning I was eating and drinking just fine. You know it's bad when water upsets your stomach!
--
Today I took my usual dose and went for a drive, at the moment disorientation and longer reaction times are an issue when I take famvir, but that could easily be the antiviral hitting infected cells deeper in tissues, in the CNS or in the brain (as it crosses the BBB). So I am hoping this will calm down with extended use.
I feel pretty good thisafternoon, haven't really had any fatigue or PEM from earlier in the day, but I tend to notice I don't feel strong enough to go for a walk or whatever until about 5 or 6pm. But until I can go for a 20 minute walk without dizziness, ultimately it won't be any better than I was last summer.
One thing to state is that I've stopped taking the glycine/choline/b5 mix today and have not noticed any difference. Normally I'd notice a difference very quickly with enhanced fatigue when I miss a dose. But the famvir seems to have taken over. Considering the glycine is meant to reduce OS and fix glycosis which is messed up by several herpes viruses, I find it interesting that I can now stop taking something I relied quite heavily on before.
It's still early days, if you don't count my 2 day famvir break, this is actually day 13 on Famvir. Hopefully by day 30 I'll have some sustained benefits with my worst symptoms improving and energy envelope increasing.
Side effects:
1. Insomnia is pretty bad, I am trying lots of things to fix that, mainly moving doses around. I've ordered doxepin simply so I can sleep, as benadryl is not doing me any good at all. I think I will take 5-htp with the valerian and melatonin and cbd oil in the meantime. But last two nights I've prob only had 6 hours. Funnily enough Heapsreal takes what I take and he's the same.
2. Grumpy, impatient, snappy. The drug after dosing can make me impatient and very snappy, I get into arguments easily. Thankfully this hasn't been an issue at work, which is probably a good thing. It's not as bad as it was on ginseng which is the important thing.
3. Disorientation after dosing - hoping it's just some sort of herx.
I also no longer need to rely on my probiotic for energy, although realistically if I were to stop taking it it takes 2 weeks for me to go downhill before I realise the probiotic is what I need to get back to basics. So I won't be stopping this.
