Starting out on Acyclovir

[heapsreal]

thank you @heapsreal how long have you been on avs ? do you remember how long after starting them you could tell they were working? sorry if this is too many questions. I am definitely a cfs person and have alot of viral symptoms. my immune systems does some strange things.

i have been taking acyclovair 800mg 2x a day..wondering if i should bump it up or just have it switched as i can't tell it is doing anything at this point.

thanks for taking the time

2009 i started famvir. Regular blood work and no ill effects from avs so far as liver and kidney function are fine. 6 months before i really noticed. I use to crash often as in every few weeks. Initially i noticed i stopped crashing and 6 months i felt better. I eventually did crash but found i recovered quicker from them and they werent as severe. Ive stopped avs a few times but not for any great lengths as i just crash badly.

If you search my posts ive written heaps of threads on famvir etc.

 

[cb2]

Thank you @heapsreal i will check out your threads. I noticed stanford uses a low dose of something like celebrex in conjunction with avs wondering if and what folks thoughts experience are on that?

 

[Binkie4]

I am in UK and began to take acyclovir ( 400mgx3 daily) in May recommended by Consultant so I am about 4 months in. Dose is lower than some people here take but seems to be in line with @heapsreal. I think Lerner recommended high doses.@ BadBadBear- the side effects were tough initially, see below, but manageable.

I haven't had any positive reaction yet but I think this is usual. I think it takes about 4-6 months for response to occur. There is another thread discussing this and if I find the link I will post it. Am really keeping my fingers crossed for a positive result as my crashes seem to be getting more frequent.

I did have a herx type response for 4-6 weeks near the beginning which I found very very difficult to tolerate. Felt very ill but kept going. I drank a lot of fluids and electrolytes

@cb2 - how long have you been taking avs?

 

[cb2]

HI @Binkie4 I started on avs in 2011 800mg 3x a day, as i recall i was able to do alot more then .. at some point i lowered them, on my own, thinking they didnt matter.. or maybe i stopped them all together (grew tired of taking things) so i am not the best example, or even a good example. so best i could say since my memory isnt clear, i have been off and on them since 2011. now i am committing to being ON them so i will stick to what was prescribed 800mg 3x a day of the acycolvair .. and i will follow up with stanford dr next month, we'll see what they say. maybe i will switch to a new one. I have to work on being patient, and that is hard when i have not felt well for 15+ years.
wishing you good success with your avs! if you dont mind @Binkie4 what was your herx response like? thanks

 

[Binkie4]

Hi @cb2
Thanks for your story.

My herx response was terrible. I thought I would need to stop but didn't. I did reduce the dose a little for 2 days which gave me slight relief but then back up. I only managed because I had someone to cook, bring me drinks etc. Glad I kept going.

I contacted my Consultant and he said to increase fluids and electrolytes which I did and I think that helped. Almost 4 months now, feel Okish ( just ME), but hoping for an improvement.

Good luck with your treatment.

 

[cb2]

@Binkie4 thank you for sharing your experience and passing along the electrolytes tip.
I am glad you had help during your herx response. I was asking because I am trying to see what folks herx look like so I can tell if I am having one, Although I know we are all different. I seem to just get more tired I don't know if that's here? That is why I was wondering what your experience was like. Was your herx
extreme fatigue and or did you have any other symptoms ? whatever the case I'm glad you're through it now.

 

[Binkie4]

@cb2

It was more than fatigue. A lot of nausea, weakness, had to lie flat in bed; it was a worsening of the ME symptoms. I think mine lasted longer than most, 4-6 weeks but it did eventually pass through.

I hope I see some improvement soon but I think it can take up to 6 months? Anyone?

Good luck cb2