• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How long generally should you be on Anti Virals?

Messages
48
Hey!

I've been on Acyclovir for 6 weeks now (I was prescribed a 6 week course but my GP has prescribed me more...) anyway, I was wondering how long you should generally be on them for, as I've been ill for 11 years now (I'm 22), and so I'm thinking 6 weeks of the Acyclovir probably isn't going to be long enough, or am I wrong? I'm feeling a hell of a lot worse, but I'm not sure whether it's the AV's or whether it was my ME getting worse anyway, as I didn't start the AV's feeling too well. I'm inclined to stop them to see if it is them making my ME so much worse again but also at the same time if I need longer on them to do more good then I'm trying to figure out how long I need to be on them for..?

Hope this made some sense!

Thanks in advance,

Becca
 
Messages
13,774
What infection are you treating?

I'd be cautious about just trying AVs in the hope of hitting something, especially if they're not making you feel any better. Sorry not to be of more use. Good luck.
 
Please check out my web site www.cfsnovel.com the page "Think you have CFS?". I have a section on when and how long to use antivirals. If you have evidence of viruses in your blood work, then going on antivirals can help.

You may have to stay on them for two years. The idea is -- not that we know for sure --that the antivirals don't kill the virus, they just stop the replication. That means you have to wait for the cells in your body to die off and be replaced by non-infected ones.

Also it is VERY common for you to feel much worse after going on the antivirals. Not sure anyone has a good explanation for why that is, but enough people have reported that happening that I would go so far to say to expect it.

I have been on antivirals for about eight months now and I'm a new person. I got very much worse right after I started them and but then eventually started to see the improvement. I was much better by two months. I would make sure the doctor has you on a strong enough dosage too. I for sure am not cured, but I'm living life very well now. I just have to pace myself. Any set backs I have are significantly shorter -- say one day, versus one week --Hang in there
 
Messages
48
Thank you for both of your replies - as far as I am aware I don't have any evidence of any particular virus, I'm being treated by Dr Bansal in the UK. It seems to me he puts everyone on AV's as far as I'm aware... (at least the other people I know who have seen him have been put on them). Should I be worried about this? :/ I have my recent bloods somewhere I think that were done for him but what sort of things should be coming back to warrant the use of AV's?

Caroline thank you for the link to your website.
 

Grape Funk

Senior Member
Messages
113
Location
USA
Thank you for both of your replies - as far as I am aware I don't have any evidence of any particular virus, I'm being treated by Dr Bansal in the UK. It seems to me he puts everyone on AV's as far as I'm aware... (at least the other people I know who have seen him have been put on them). Should I be worried about this? :/ I have my recent bloods somewhere I think that were done for him but what sort of things should be coming back to warrant the use of AV's?

Caroline thank you for the link to your website.

If you can get viruses checked i personally vouch for that. Then you can see your progress of level of titers of viruses when you check. Also try to order an immune modulator, that will help boost your NK cells hopefully and other antiviral properties of your IS. Check the threads in this Antiviral section, there are stories(SickofCFS, UndCvr, Heapsreal) bunch of people who have done trial and error with these vile critters amoungst us and in us and how to treat them. PEace
 
Messages
1
Hi, p

TaintedLuv - did I hear you say 'anti-virals in the UK'? - I thought such a thing was a pipe-dream! - I thought it was a case of throwing one's life savings (if you're lucky enough to have them) at going to the US for treatment.

I have never heard of Dr Bansal - A bit of googling finds his NHS practice which offers the standard CBT type approaches, so I'm guessing you're seeing him privately?

What's your experience of him?

In particular:

- Has your course of acyclovir been extended? (From what I hear - to be effective for ME, AV treatments need to continue for c. 1yr)
- Did he do a thorough blood work up to check which infections you have before deciding on the appropriate anti-viral treatment?
- Did he discuss other anti-virals? From what I've read acyclovir is the least effective because of its short half life. - Hence US Drs opt for Valtrex, valcyte, Famvir instead. (Although I'm wondering if he went for acyclovir because maybe it's cheaper - and no UK insurance would cover an anti-viral treatment?)

I hope I haven't joined this thread too late as I'd be really keen to hear your story with Dr Bansal. If there is genuinely an option to source decent anti-viral treatment in the UK, then it would be an utter godsend.

Many Thanks,

L
 
Messages
54
Location
rome italy
HI Taintedluv!
how are you doing these days? are you still on antivirals? have you noticed any improvements?
I also started acyclovir this past march and also noticed some worsening of symptoms at the beginning, but after a month or so, i started feeling better, well, like i did before the taking the acyclovir.
I also have had the ilness for 11 years, since i was 17, too long!!
For the moment I havent noticed any improvements from acyclovir, but im still crossing my fingers and hoping It will help me soon.
I would like to know how you are doing?

HI CAROLINETANDERSON!! Its so good to read that people are getting better on antivirals! I wish they would work for me like that! :)
I wanted to ask you if you knew how long you had to wait to see an improvment from antivirals. do you think the improvements can come after 6 or 7 months? OR do you think they come after 5 or 6 weeks like in your case?
how are you doing now? are you still on antivirals?
hope you are still doing good and enjoying your health!! :)