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Chronic Fatigue Message Board


Chronic Fatigue Board Index


Thanks for the heads up re. there already being a thread going on anti-virals! If I had EBV, I'd definitely give Valtrex a try, since it seems to be very safe, and EBV responds well to it. I have HHV-6 and CMV, though, so am not sure about it's effectiveness. Another thing I'm looking into is Nexavir, which used to be Kutapressin--works as an anti-viral. Good luck!
[COLOR="Purple"]Hi nmgrl....

Learned a long time ago you can't go solely on test...With the EBV and CMV there are times wihen you can test and it isn't active...then other times it is....

I know the Valtrex is doing well for me.

Hope you find some answers soon...no fun living each day feeling yucky!

Good Luck to you!

:D [/COLOR]
[COLOR="Purple"]:wave: Hi Miyu!

Well sweetie I am turning 52 here in a couple of weeks...So yep some of it is good old age "now" ....

But i will say even at this age I feel soooooo much better than I have for over 20 years...:)

Don't know if you read my post at the top but I have been dealing with Lyme disease, went mis-diagnoised...and do believe I had another infection called babesisa...then on top of that...dealing with EBV, CMV. and shingles and Lord knows what ever else inbetween.

I "was" put on acylovir and zovirax for a couple of years...but those did nothing really for me.

And I still didn't understand the nightmare that "herpes" can put you through. I didn't understand that CMV, EBV, were both in the herpe family...NO ONE really ever said anything to me about why my test results for those were positive reactive one time then just positive the next. NO one really addressed the fact that I needed more than just these two meds. NO one seemed to be freakin out about me having these virus's reappearing ...Funny cause now that I have been on 7 years of anitibiotics and looking back over test oh my gosh there are some real idiot doctors out there...

I didn't really understand completely about Lyme either...Until I found this board...Well after 4 years of antibiotics and still really not knowing what I had...and the docotor that was treating me retired I had to start seaching agian. I wound up going to a doctor that treats fibro with antibiotics and he also treats Chronic Fatique.....And that is with Valtrex.

In 2000 I had these "mushy" spots appear on my head....between my scalp and skull...and they would swell up real big then go back down...they would move around up there ...first started off around my soft spot ...WEll sounds crazy but around my periods and Full Moon I would be totally out of my mind....The doctor that was treating me for lyme said he had one other patient that had these also. But her's went away with treatment...I meet another girl that had these too...I lost touch with her when she was taken to a hospital in San Fran...So went my journey trying to get doctors to help me figure out what the hell this was...Why was I going nuts...WHY THESE MUSHY SPOTS!!

Sooooo when I went and started seeing this last doctor he studies bacterias, microbacteriums and virus's. He listened...And agreed with me ...it had to be one of these or a combination of these...

I was walking around feeling like I had a hand on the right side of my head squeezing it ...kind of like in a no emotion, flat brained state...Got to the point where I couldn't feel things on my skin like hot and cold...couldn't cry or laugh anymore...Couldn't respond to people when they talked to me...Felt highly parinoid when I would go somewhere...So I stopped going places...And some other things...So....being on the Valtrex and some other combinations of antibiotics...The pressure has stopped...and now the mushy spots are at the back side of my soft spot...Warm to the touch... I can do things now..."MOST" of the time...

Yep been a real crazy time. I really wish someone had put me on something like Valtrex at the very beginning...I still truly have no idea exactly what lies under my skin. But I do know these med's keep it down...I will go back to this doctor before summer is up...Right now I just keep taking my med's.

So I've learned virus's are most likely worse than bacteria's. Bacteria's you can kill off with antibiotics...Virus's go back into remission...only to come out later in life...(in some cases).

Yes if a person has had chicken pox's then they have a form of herpes....It imbeds itself in your spine and lies there only to come out during stress or when ill....

I use to think there was only ONE kind of herpe...what a surprise there are many....

I don't understand this take a medicatiion only during break outs...In my opinion IF a person is having continual problems wouldn't they want to be on it every day?

I am not familiar with famvir.....Sounds like in the aclovir family...which from what the doctor says that I go to now Valtrex is the best one for herpes.

All you can do is try taking it each day...and for a few months...then see if it makes you feel better...Being sexually active from what I have read and been through doesn't cause the outbreaks...It is how your immune and nernous system is....

Hope my story helps....Good Luck to you ....

Hugs...
:D [/COLOR]
[QUOTE=jojo;2994910][COLOR="Purple"]Hi nmgrl....

Learned a long time ago you can't go solely on test...With the EBV and CMV there are times wihen you can test and it isn't active...then other times it is....

I know the Valtrex is doing well for me.

Hope you find some answers soon...no fun living each day feeling yucky!

Good Luck to you!

:D [/COLOR][/QUOTE]

I wish I would have known this 16 months ago. Probably would have helped me with not getting this way. I tested negative, then started looking at everything else that can cause fatigue.

I meet with my doctor this Thursday. She said she is going to start me on Valtrex (3-4 grams a day) for 3-4 months and see how I do.

I'm excited. Even if it does mean that in 2-3 weeks, I could get worse.
From Dr. Learners site.


"Twenty-five patients with CFS illness were treated orally for 6 months with pharmacokinetic doses of valacyclovir (valtrex) in a formulation to give continuous anti-EBV effective blood levels throughout the day. This is the first time such valacyclovir dosing was given. The trial was approved by the U.S. Food and Drug Administration. Patients were carefully monitored for safety by repeated appropriate blood tests. There were no adverse side effects. Sixteen patients with single virus EBV infection were benefitted, but 9 clinically similar CFS patients with EBV-HCMV co-infection were not benefitted. Valacyclovir (valtrex) in the laboratory is effective versus EBV, but it is NOT effective (active) versus HCMV. Therefore, the results strengthen the need for subset classification and appropriate subset-directed antiviral treatment for CFS illness. This, to our knowledge, is the first successful report of valacyclovir treatment for EBV infection."


"Eleven CFS patients with EBV-HCMV co-infections were appropriately treated according to their prior subset classification over an 18-month period with antiviral drug treatments. All patients were carefully monitored for safety every 4-6 weeks. Valacyclovir for EBV infection and ganciclovir for HCMV infection were used. There were no significant side effects in CFS patients. All 11 CFS patients in this study were significantly improved."
Hey there. I'm a newbie on the message board but have lived with Chronic EBV for a long time. About 2 1/2 years ago it knocked me right off my feet and theat's basically where I've stayed since then.

I've been excited about the Valganciclovir (Valcyte) study at Stanford, pinning most of my hopes on that. I've never heard of using Valtrex before. Nor have I heard of the saliva panel, T3's or T4's until just last night, then again today with you. I know everyone reacts differently, but anytime I run across a new treatment possibility, it just puts another check in my hope box.

I hope you don't mind if I join along and follow your posts for a while. They are very inspiring to me.:)
Hi, it's been about 6 months since I last posted here because I have been really out of it with this darn CFS and FMS and Hashimoto's Thyroiditis.

Ten weeks ago I started Valtrex at 3000 mg for the first week and then decreased it to 1500mg per day. The first couple of weeks were great and I felt the best I had in the past 3 years.

Week 3 and on I have just been going down hill. Just had EBV titers retested and they are higher now than they were 10 weeks ago. I also was running a severely high fever and BP was spiked in the extremely high zone. Today is a much better day.

Valtrex is expensive, at around $1000 per month, but insurance is paying. Not sure how long my integrative doc will keep me on this but I really hope it is doing me good and not making matters worse.

I will try to keep you all posted on the AV and my condition.





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