Ended up dosing valtrex 500mg every week or every 5 days because my kidneys just got very inflamed if it was taken more often than that. 250mg doesn't seem to do anything. 1g causes more of an allergic reaction.
Id like to try tenofovir but I believe Dr Weir no longer prescribes it so I'm pretty stuck for doctors help with that.
Valcyte is another option but cost + blood tests + herx reaction would be too much.
Long story short I'm into something.
Since June 2020 acute ebv reactivation and a less aggressive infection in June 2021 the back of my jaw has not felt right. But it responds to antivirals and anything vaguely anti biotic/antiviral but nothing else. So I assume it's tissue that's not healed very well. Ligament tissue maybe with poor blood flow.
The last week's been rough as I took famvir 250mg for about 8 days. Famvir seems to have some odd effects on me but mainly stimulates my immune system in some weird way and then lack of sleep causes adrenal fatigue and I think it creates a bad feedback loop.
I've also noticed stress and antiviral therapy with exertion are a very bad mix. After 8 days on the famvir I crashed badly and it was so bad I had unrelenting fatigue for about 5 days thereafter which for me is a very long time. I did ART and got better but only after taking 250mg of some old valtrex which is the generic kind. This sent me a bit loopy but did have a good effect on a virus...I assume ebv. I woke up the next day feeling rough but I felt CALMER and I was then able to actually rest.
Thr day after that I gave the famvir one more go. Just took 1g in two split doses because I was dizzy, had fatigue still and wasn't where I had even before trying it. That crashed me again but far less badly woke up in the morning with pharyngitis.
In February I kept waking up with a sore throat for about 2 months. It wasn't until I took valtrex that this went away.
Through all this I've figured out that valtrex hits something and famvir hits something else. I've got a cmv test next week. I can only assume that I'm the patient who needs valcyte becuase I don't tolerate valtrex and that's the drug that seems to work for me.
However on a side note I think I might also be allergic to valtrex as I did experience a fainting episode one hour after dosing it coming out of the shower. I then had dysautonomia symptoms for about a week after that and I've felt MUCH weaker physically than I did before my 8 days of famvir. I took the famvir to try and get back to where I was after the valtrex crash.
Essentially a viscous cycle could form.
My EIPS is about 8 so I'm certainly safe to be testing my limits. But I guess it's come at a bit of a cost. Still at least I know where I stand now.
Current symptoms are cortisol that's all over the place. Waking up at night which almost never happens these days. Wired all the time. Sore throat (mild). Dizziness when doing a task normally I didn't have this issue before the avs - so not sure if that's from ebv becuase I'm not dosing valtrex often enough or another pathogen.
So far I've ruled out the following:
Chronic streptococcal infection
Mycoplasma pneumoniae infection
Lyme was inconclusive assume dodgy cross reactivity
Ebv was dormant January 2021. But a year later it reactivated although mildly thank god.
When I was in hospital they gave me iv steroids and I felt huge relief after this and my illness resolved.
Suzan Parker who's pretty much cured her ME with inosine and ldn got covid about 3 months ago or maybe it was 5. Anyway she certainly had long covid and her ebv reactivated and god knows what else. She went back on valtrex but had been really struggling to recover.
She told me she took some steroids on her doctors advise for 5 days to reboot her immune system and it worked. She says she's fine now the long covid symptoms have gone. If that is maintained it makes me wonder why some patients don't have viral persistence. Saying that she is fully vaxxed so that might explain it. Also Inosine might just kill covid off over time and she does take the full dose.
So I think steroid therapy could be important. I do feel like I'd benefit from it not going to lie. I feel like my inflamation is often way too high in the immune system. But goes down considerably after taking valtrex. So I can only assume it's created by ebv
Also I found recently that ebv generates a ton of oxidative stress as proven by an ebv study that I read and if it does this better than other viruses. Might explain why I currently do not feel right at all. Plus my energy envelope is a bit ragged. But I know I can fix that becuase I did that last week.
So I'm milder than I have been in some ways but worse in some others. I'm tentatively assuming tho that I am improving. Because my brainfog really feels improved. Fatigue is way better. Yet my body is struggling in some other ways. Next week should be interesting.