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Old 08-23-2009, 05:16 PM   #1
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Anyone tried Valtrex for Chronic EBV?

Hello,

I've had chronic epstein barr virus infection for the past 16 months. I first started taking acyclovir in 12-08 for 6 months but didn't notice significant improvement. I'm not bedridden but I have to sleep 10-12 hours a day and still wake up tired.

I then changed to taking Valtrex 6 weeks ago (500 mg 3 times a day & I weigh 105 lbs). Weeks 1-2, I wasn't noticing difference. Weeks 3-4, I was feeling a lot worse; I'm not sure if maybe the Valtrex was working or if I just over-exhausted myself (I had a very long day before things got worse). Week 5, I felt like maybe there were some signs of recovery. I've been getting lots of rest, and Week 6 - I feel like I'm back to where I was before the Valtrex and wonder if it is even working.

-- Is or was anyone on Valtrex for treatment of chronic EBV or chronic fatigue in general?
-- If so, how long did it take to see improvements? Did it get worse before it gets better?

I'm just puzzled because I don't know if the Valtrex is working for me. I'm supposed to take it for 6 months for the treatment, but I'm supposed to start working again in 3-09, and I just don't have endless 6-months to keep trying new drugs and end up finding out that they don't work.

Thank you in advance for your help!!

 
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Old 08-26-2009, 05:38 PM   #2
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Re: Anyone tried Valtrex for Chronic EBV?

From what Iíve read, Valtrex will work if the ONLY viral infection is EBV. Two other viral co-infections frequently found with EBV are HHV-6 and CMV. You should be tested for co-infections starting with those two. If you have either in addition to the EBV some people have found Valcyte to be useful.
Good luck, tt

 
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Old 08-27-2009, 12:12 PM   #3
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Re: Anyone tried Valtrex for Chronic EBV?

Thanks, tt. I have been tested for HHV-6 and CMV and some other viruses/bacteria. No CMV and HHV-6 is very low that it shouldn't be the cause of fatigue.

I'm trying to find out if Valtrex works for everyone who only has an EBV infection, or only a subset. Please let me know if you happen to know; thanks.

 
Old 08-28-2009, 08:25 AM   #4
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Re: Anyone tried Valtrex for Chronic EBV?

It IS working for me. I sent you a message did you get it?

I read the doctor you are seeing had studies going in 2007 at Stanford. And he got a good response to antivirals.

It just takes time. Cause like with everything it depends on each individual's body.

Took at least 8months of Valtrex before I started seeing any improvement.

Keep at it.

Jodie


 
Old 08-28-2009, 10:17 PM   #5
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Re: Anyone tried Valtrex for Chronic EBV?

Hi Jodie,

Thanks for this message. For some reason, your earlier message didn't get through the email filter; I'm so glad that I was able to retrieve it!

Thanks very much for your response! I will try to be patient and also work on having a better sleep schedule too and see if it helps.

Take care,

Iris

 
Old 09-12-2009, 03:07 PM   #6
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Re: Anyone tried Valtrex for Chronic EBV?

Quote:
Originally Posted by the tortoise View Post
From what Iíve read, Valtrex will work if the ONLY viral infection is EBV. Two other viral co-infections frequently found with EBV are HHV-6 and CMV. You should be tested for co-infections starting with those two. If you have either in addition to the EBV some people have found Valcyte to be useful.
Good luck, tt
I have just started on Valtrex for CFS/EBV. I was also told there was CMV present, but it would help that too. I am taking 3 x day for 1month, then 1 x day for 5 more months. So far nothing, but its only been 12days. I do feel very bloated and "itchy" but no rash..yet. Wonder where there is more info about it not helping if multiply viruses present. I dont want to take this stuff for 6months if it isnt going to help. I have read about Valcyte and was thinking to say something about it to the dr, but didnt, thinking I'd go for the valtrex 1st, since he was so convincing about its results.
Thx much for any help/insight!!

 
Old 09-13-2009, 03:17 PM   #7
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Re: Anyone tried Valtrex for Chronic EBV?

Quote:
Originally Posted by fkitangel View Post
I have just started on Valtrex for CFS/EBV. I was also told there was CMV present, but it would help that too. I am taking 3 x day for 1month, then 1 x day for 5 more months. So far nothing, but its only been 12days. I do feel very bloated and "itchy" but no rash..yet. Wonder where there is more info about it not helping if multiply viruses present. I dont want to take this stuff for 6months if it isnt going to help. I have read about Valcyte and was thinking to say something about it to the dr, but didnt, thinking I'd go for the valtrex 1st, since he was so convincing about its results.
Thx much for any help/insight!!

Hello fkitangel,

1. What doses are you taking for the 1st month (3x a day) and the next 5 months (1x a day)?
2. What is your energy level compared to normal, and are you working full time for example?

I have also read about the Valtrex being potentially effective on EBV alone, and that EBV plus CMB or HHV-6 may be better treated with Valganciclovir (valcyte).

I have been taking Valtrex for 2 months now; I feel though my symptoms have gotten worse. Maybe the Valtrex is working or maybe I'm just getting worse; I don't think it's possible to tell. I will follow through with the 6-month treatment though, and hopefully maybe I can ask my doctor if he can increase the dose.

The studies done by Dr. Lerner in Michigan seem to have treated the patients with higher dose than I'm taking. You may want to look at some of his studies results on EBV and CMV too I believe.

 
Old 09-14-2009, 06:36 PM   #8
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Re: Anyone tried Valtrex for Chronic EBV?

Quote:
Originally Posted by apple001 View Post
Hello fkitangel,

1. What doses are you taking for the 1st month (3x a day) and the next 5 months (1x a day)?
2. What is your energy level compared to normal, and are you working full time for example?

I have also read about the Valtrex being potentially effective on EBV alone, and that EBV plus CMB or HHV-6 may be better treated with Valganciclovir (valcyte).

I have been taking Valtrex for 2 months now; I feel though my symptoms have gotten worse. Maybe the Valtrex is working or maybe I'm just getting worse; I don't think it's possible to tell. I will follow through with the 6-month treatment though, and hopefully maybe I can ask my doctor if he can increase the dose.

The studies done by Dr. Lerner in Michigan seem to have treated the patients with higher dose than I'm taking. You may want to look at some of his studies results on EBV and CMV too I believe.
I am taking 1GR 3 x day for 30days and then will take 1GR 1 x day for 5 months and then completely stop.
I have been out on disability because of the fatigue for 1 1/2 years now.

 
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