My experience with Valtrex

[heapsreal]

hi mike,
been a short while since we heard from u. How are u travelin? Still improving i hope.

cheers!!!

 

[mikipe2]

Hi heapsreal,

Yeah, I try and keep the updates monthly to keep it simple. Here's the latest one:


11 Months

I actually still feel like I’m improving. I guess the only specific difference is that this month I feel more resilient to relapses. I haven’t had one in quite a while despite doing light walking, dieting, and fairly regular (but limited) weights.

I’m still not working, although I’m looking now (specifically for something that uses my uni degree, which might take a little while).

 

[heapsreal]

good to hear from u, thought we had lost ya. Good to see u still improving slowly. Thats good that u have been able to do some light exercise without a relapse. Hope u find some work soon, im aiming for loto, lol.
keep in touch dude,

cheers!!!

 

[sleepwalking]

I haven't posted very much here because I'm just too ill but I saw this thread and wanted to tell you that I stopped taking Valtrex at the beginning of January because I just couldn't afford it anymore. I had been taking it for 3 years. I never felt any better on it, but I didn't want to get any worse as I continue to go downhill every year. Also, if I went off it for even 2 days I would break out in herpes. I have EBV and recurring mono.

I switched to acyclover.

The most noticeable change since I stopped talking it at the beginning of the month is the horrid vibration in my groin area has finally stopped and my hair has stopped falling out. I can't for sure attribute this to the Valtrex, but since the vibration/buzz was intense and had been going on for about a year and it has suddenly stopped is notable. My hair loss was so bad that my hair would be plastered all over the shower wall when taking a shower and also my pillow and clothes - I was shedding every where. In December I finally went and got it all chopped off.

The other change is that I cannot seem to stay awake. Even if I manage to sleep well I fall asleep about 2 hrs after getting up. Just can't keep my eyes open. I've been on a 2 hr on, 2 hr off schedule almost every day the whole month.

I know we are all so different and react differently to meds, but I'm left wondering why I insisted on being on this med for so long.

 

[mikipe2]

Hi sleepwalking,

I'm so sorry that Valtrex didn't work for you, and to hear about all of your terrible misfortune.
Thank you for your contribution, though. It's important that we share as much information as we can.

Mike.

 

[undcvr]

Hi Sleepwalking, isn't Acyclovir just the actual chemical for the drug Valtrex ?
I have recurring ebv and mono too. My body just cant seem to keep the damn thing down.

 

[lartista]

Mikipe2, thank you so much. It is truly encouraging. I started Valtrex for 3.5 weeks without knowing much about this illness CFS. Then when I got back to Italy, it was sooo expensive I could not afford it. I have ordered it from India but I am still waiting for it to arrive. I need to be hopeful that something can help. Thanks again.

 

[energyoverload]

hey heapsreal,

hope ur still doing well! sorry if this has already been covered but have you tried Valcyte before. Or just Valtrex and Famvir?

Jake

 

[mikipe2]

Hi all,

Sorry, I forgot to do my 12 month update, but I'm still about the same as at 11 months, no real change.

Mikipe2, thank you so much. It is truly encouraging. I started Valtrex for 3.5 weeks without knowing much about this illness CFS. Then when I got back to Italy, it was sooo expensive I could not afford it. I have ordered it from India but I am still waiting for it to arrive. I need to be hopeful that something can help. Thanks again.

Hi lartista,

I truly hope that Valtrex can help you and others. From what Dr Lerner says, it's likely to help people with EBV infection, but not CMV, HHV-6.

My current drugs are also manufactured in India by Cipla. I continued to see improvement after switching from GSK Valtrex to Cipla generic, so I believe that they are completely legit.

I wish you the very best!

Mike.

 

[heapsreal]

hey heapsreal,

hope ur still doing well! sorry if this has already been covered but have you tried Valcyte before. Or just Valtrex and Famvir?

Jake

hi energyoverload,

no i havent tried valcyte as its priced out of my league, but famvir has done enough to drop my viral load. Now im working on sorting out my low adrenal hormones and hopefully sort out my sleep and residuel fatigue left over.

Hi mike, good to see your not going backwards, i think after your initial good improvement it then slows down. Possibly look into other things that may help improve like sleep, vitamins and herbs etc. Thanks for keeping us updated.

cheers!!!

 

[heapsreal]

Hi all,

Sorry, I forgot to do my 12 month update, but I'm still about the same as at 11 months, no real change.





Hi lartista,

I truly hope that Valtrex can help you and others. From what Dr Lerner says, it's likely to help people with EBV infection, but not CMV, HHV-6.

My current drugs are also manufactured in India by Cipla. I continued to see improvement after switching from GSK Valtrex to Cipla generic, so I believe that they are completely legit.

I wish you the very best!

Mike.

hi mike,

how r u going on the valtrex? Made any more improvement or holding steady.

cheers!!!

 

[mikipe2]

Hi All,

Sorry, it looks like I haven't updated in over 5 months :S. Thanks to heapsreal for sending me a reminder!


16 Months

Overall I've been really good, but I had a really bad patch from early Feb to mid-April where I had the same thing as last Winter, a head cold that penetrated really deeply, stuck around and left me lethargic and in bed. My CFS Dr suggested that it was the Valtrex suppressing my immune system so I immediately dropped to 1g/day and got better in 1.5 weeks. Started to come down with the same thing again a month or two again, but went completely off the Valtrex straight away and I had a couple of days mild CFS relapse, but managed to avoid the head cold thing. So I'm going to try to pulse the Valtrex, have 3g/day for about 3 weeks, and then give my body about 2 weeks break from it. Hopefully that's enough to do some good without screwing up my immune system.

For the months that I've actually been good though, I've been far better than ever! I've been doing weights (quite hard at times), and dieting (lost almost 20kg since September). Been looking for a job, but had trouble finding a part time position in my field.

I must say, in the times that I've been off Valtrex, I've tried to spot treat any potential CFS relapse. As soon as I get fevery and muscle achey I take a 1g tablet, and in combination with rest, it really seems to fix me up!

 

[Sarah4141]

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[Christopher]

I experienced initial improvement with doxy alone, and then added valtrex at normal dosing which improved me a little further, sustained at some months. I wonder why my immune system can't handle these minor infections. At least it's not a retrovirus. ;]

 

[heapsreal]

I experienced initial improvement with doxy alone, and then added valtrex at normal dosing which improved me a little further, sustained at some months. I wonder why my immune system can't handle these minor infections. At least it's not a retrovirus. ;]

SOmething keeping your immune system down, dont rule out a possible retro doing this. Many with cfs/me have poor nk function, this is going to leave you open to viral reactivations like ebv and other bacterial infections etc. So i think we have some type of immune defiency going on, whats causing it is the million dollar question.

cheers!!!

 

[PGHCFS]

I have just started Valtrex today. I would love to hear how Mikipe2 is doing now, any news? Is anyone else taking it and having good results?

 

[LaurenMG]

This is an old thread....but just in case anyone is still following....would love to know how people with Valtrex are doing? My son has just started it....