Topic: Those who've tried Valtrex or Acyclovir-please read
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
For those who either took Valtrex or Acyclovir, would you please provide me with your experiences...I've started this medication and it has increased my joint pain, increased my stiffness, created more brain fog, and decreased my stamina. Did anyone else have a similar experience with this? If so, how far into treatment did it take for these symptoms to eventually subside??? Did either of these meds help you and, if so, how???
(Incidentally, my LLMD is just "testing" me on this regimen because a patient with symptoms extremely similar to mine greatly improved on Acyclovir after a month. She, too, suffered through these increased symptoms initially but then felt better in week 4)...
Thanks for any help!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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timaca
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Member # 6911
posted
Bugg~ I've not been on it...but have heard that if you have high viral titers (especially to EBV) that valtrex can cause die-off and thus increased symptoms.
I have completed a 9 month course of valcyte, and will likely be on valtrex next.
Did you have high viral titers?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Timaca--
Thanks, as always, for helping so many on this board. Actually, my titers for EBV were quite low and I'm not taking the anti-virals for that. Rather, my LLMD thinks, in some cases, enteroviruses...HSV-1...HSV-2 etc, as you know, can prevent some people from making improvements...That's why he's started treating some of his patients with Valtrex or Acyclovir to see how they respond....It's totally experimental but, what the heck, I got nothin' to lose at this point....
I also want to address an earlier post of yours where I think you mentioned you tested positive for Chlamydia P....I want to ask those who test positive for either Chlamydia P or Mycoplasma P to consider getting retested for it before they begin treatment.....I actually tested positive for Chlamydia P and then a couple of months later (WITHOUT ANY TREATMENT)I tested negative for it....Also, I've routinely tested negative for Mycoplasma P and now I'm testing positive for it....My LLMD says that he sometimes sees lyme patients testing falsely positive to these two infections because their bodies are addressing other viral infections or bacterial infections.......Before I launched into a long treatment for either of these, I might test again....Just a suggestion....
Posts: 1155 | From Southeast | Registered: Oct 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Bugg~ Yes, your suggestion about retesting for Cpn is wise, and I was going to do that prior to treatment for it.
I also am positive for HSV1. I plan on speaking to the ID doctor about this, as it can also apparently cause CNS issues in some people. I think that is why I will be on valtrex next.
I would really like my body to stop being infected with things I've never heard of!
With regard to mycoplasma, I did speak with the researchers that know about it and they said that they get suspicious if titers are above 1:200 for mycoplasma. Below that they don't feel there is active infection going on...
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
My LLMD concurs with your research on Mycoplasma testing...that's reassuring!!!
Thanks, as always, for your wonderful insight...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I'm on Valtrex for EBV. I haven't really noticed anything-good or bad since starting. Maybe I'm less tired on my day to day? The only thing I HAVE encountered is the pharmacy looking at me like I have herpies. Maybe it's my paranoia, but I don't think so. (My boyfriend also noticed the pharmacists' change in demeanor-LOL). Yeah, I have herpies...between my ears, and it's not a symplex.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
I'm on Valtrex for lots of viruses. I haven't noticed anything good or bad since I started it.
I don't know if that helps. My EBV titers are really high. I don't know if it has anything to do with my insane fatigue...or the valtrex maybe "re-activated" it? I have no clue. Sorry, not much help.
Posts: 215 | From Student | Registered: Oct 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I just started taking a course of acyclovir for genital herpes but am positive for EBV and Mycoplasma too.
I noticed today that I'm having head pressure and jitteriness. Also an overall general feeling of malaise.
Must be getting to one of the buggers in the brain. Which one I'm not sure.
Glad I read your post because I wasn't sure what was going on either. Guess we're in the same boat.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 5557 | From Columbus, GA | Registered: Jul 2004
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I'm on valtrex 1 G a day for EBV. The first 2-3 weeks for very rough.
I reduced the dose to 500 mg once a day for a week, then went to 500 mg 2x per day, and then was able to tolerate 1 G once a day.
Been on it 7 months. No noticeable improvements with it.
I also took it about eleven years ago before I knew I had Lyme -- did not notice any changes then either, and if it affected my EBV titers, it was temporary.
I've read that high viral titers for any of the herpes viruses can cross-react, raising the titers for HSV1, HSV2 and HHV-6.
Posts: 1172 | From USA | Registered: Nov 2007
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
When I take Valtrex I get the same symptoms as you. Not fun. But you may feel better after the treatment ends.
I tend to treat these symptoms as a regular herx. Hot epsom salt baths, anti-inflammatories, low dose benadryl, anything that generally helps a herx.
Best, Karen
Posts: 1605 | From Maine | Registered: Jun 2004
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posted
I took Valtrex 500mg for shingles last year and I lasted all of 5 days.
Doc took me right off of it. I felt shaky, weird and like I was carrying my head around.
Never again.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Thanks for all of the fantastic replies...
Does anyone know why anti-virals cause a worsening of symptoms (fatigue; joint pain and stiffness; brain fog)??? My understanding is that antivirals like Acyclovir and Valtrex only stop the replication of the virus and aren't actually killing anything (hence there should be no "die-off" reaction).
How do we know these harsh reactions aren't just lyme patients experiencing the worst side effects of these meds???
I just don't know how much longer I can stay on these anti-virals when it's all so experimental and they make you feel so much worse. I hate the idea of being one of those people who makes myself feel worse for 6 months with no benefit...Ugh!..I really wish those on this board who were helped by these meds would "chime in" and share their experiences...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Hi Bugg~ I think my reaction was just a reaction to the meds as my son can't take it well either.
If you think about it, viruses can't be killed. You can only stop the replication process. So when you take these anti-virals it can only shorten the duration of shingles, herpes, etc.
At least this is what my doc told me and it certainly makes sense.
If I was having such a reaction to it if I was you, I would call the dr. and tell him you would like to stop.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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