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Strong and quick reaction to Valtrex

pine108kell

Senior Member
Messages
146
Started valtrex two days ago 1.5 g x 3 daily, rxed by Dr. Lapp. Now have enhaced fatigue, agitation, depression, flu feeling--really laying me down. No gi problems. Although i did have off the chart igg titres for ebv I wasn't expecting anything from this drug, esp within day or two.

I also have lyme and this resonse is very similar to the lyme herx fom antibiotics, but is this fast and strong response normal for valtrex? I know Lerner and Montoya describe herx type reactions but concerned this fast of a response may be drug reaction. Appreciate comments from anyone having experiences with this?

Dr. Lapp did say my titres were quite high, even for his patients, even though i rarely have swollen glands, fever, or typical acute ebv symptoms.
 

SOC

Senior Member
Messages
7,849
That is a lot to hit your body with suddenly. Did you start low and work up to that dosage?

Antivirals do not kill viruses like antibacterials kill bacteria, so a herx effect shouldn't come into play. Antivirals stop the virus from replicating so that no more is produced while the "old" viruses are dying off naturally. This process takes longer than an antibacterial usually does. I wouldn't expect to see a positive effect of any kind in the first couple of days. That's why I would suspect that your symptoms are a side effect from taking too much too fast for your body. You know how some PWME's bodies are hypersensitive to meds. Might be worth checking with Dr Lapp.

Any herx-like effects are seen more often with Valcyte, which Drs Lerner and Montoya use more commonly. However, it's possible you could have a similar rxn with Valtrex. The herx-like rxn to Valcyte is probably due to IRIS (Immune Reconstitution Inflammatory Syndrome) as is sometimes seen in HIV patients starting HAART. It's what happens when your poorly functioning immune system starts to kick back in. You would not see this after a couple of days.

What titres were high? EBV? CMV? HHV-6? HSV?
 

pine108kell

Senior Member
Messages
146
Helpful, thanks for the response. I knew this about antivirals not really killing, which is one reason I was concerned.

Yes, i went straight to the high dose. I wasn't told otherwise. Ebv titre was as high as could be listed. Hhv6 was also high but not as high as could be listed (i am aware that valtrex is only for ebv--can't afford valcyte and sounds kind of scary)

I am thinking it is probably a drug reaction, but it is strange that it is an exacerbation of my chronic symptoms and no new ones. Strange i don't get dizzy, no headache, have gi problems or other most common side effects listed, only worsening of same chronic symptoms (although I admit some of those are also listed--just not as common).

Thanks for describing IRIS--that sounds plausible as an explanation for the "antiviral herx", but as you suggest would seem odd to be experiencing that after a few antiviral pills.
 

SOC

Senior Member
Messages
7,849
As I recall, Dr Lerner has you work up to the full dosage over a few days to a week just in case you don't react well to it. Still, I agree that it seems odd to have symptom exacerbation instead of side effects. But what do I know? :D

It sounds like you've got a really high viral load. :eek: Maybe that's a factor here. I hope you can get an answer from Dr Lapp tomorrow. Good luck!
 

SOC

Senior Member
Messages
7,849
Just thought of something..... Valtrex can give you kidney trouble if you don't drink LOTS of water with it. I think kidney stones is the big concern. Dr Lerner used to nag ;) me, saying even one day of not drinking enough water could cause problems.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Just thought of something..... Valtrex can give you kidney trouble if you don't drink LOTS of water with it. I think kidney stones is the big concern. Dr Lerner used to nag ;) me, saying even one day of not drinking enough water could cause problems.

lerner uses famvir for those prone to kidney stones as its not suppose to be a side effect, plus famvir can help with hhv6 and cmv to a certain degree as well going by peoples experience here.
 

SOC

Senior Member
Messages
7,849
lerner uses famvir for those prone to kidney stones as its not suppose to be a side effect, plus famvir can help with hhv6 and cmv to a certain degree as well going by peoples experience here.

I believe Drs Klimas and Rey use Famvir as their first line antiviral.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi Pine, I had no bad side effects to Valtrex (at 1gm a day) and only good reactions. Maybe cut down to a low dose and then work your way back up again? I'm only taking that dose as I can't afford to buy more.

Previously when I tried AB's I couldn't tolerate them (severe side effects) but combined with the Valtrex and Immunovir the reactions are better. It may be for some of us we need to find the right dosages and the right combination so that the herx or iris or whatever it is is more tolerable.

For an IRIS type reaction I tried Benaryl which did help me somewhat.

The Valtrex had obvious good effects for me in less than a week so I'm not surprised that you had them in such a short time. The symptoms you described are similar to when I tried to take AB's.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I also had a Herx-like reaction to antivirals, specifically Famvir, that lasted about 2-3 weeks.

I know a lot of people that have experienced this even though it is not supposed to be possible.
 

pine108kell

Senior Member
Messages
146
I also had a Herx-like reaction to antivirals, specifically Famvir, that lasted about 2-3 weeks.

I know a lot of people that have experienced this even though it is not supposed to be possible.

Did this reaction happen within the first few days? And did you later see any improvement?

Thanks all, this is very helpful,and yes, I am drinking a lot of fluids.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Did this reaction happen within the first few days? And did you later see any improvement?

Thanks all, this is very helpful,and yes, I am drinking a lot of fluids.
Yes, it happened within the first few days and lasted 2-3 weeks.

It's only been about 10 weeks now which I don't think is enough time to see a lot of improvement. I was planning to re-test around month 6.
 

Timaca

Senior Member
Messages
792
Here's what happened to me when I started a much lower dose of valtrex:

10/21/11 Start 250 mg Valtrex.
10/23 -10/24 Headache
10/28 night—muscle pain
10/29 hard day That night I have severe pain in the trunk of my body starting in my back around my rib cage (so painful it was hard to get to sleep). In the middle of the night it switched to the front of my rib cage. I was also quite nauseated and put a trash can beside my bed in case I threw up.
11/3/11 5 minute bout of tachycardia
11/5 lots of back and rib cage muscle pain. Full body fireworks at night.

I'm on a higher dose now....was most recently on 500 mg twice a day and now increasing to 500 mg 3 times a day.

Good luck.....Best, Timaca
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Hi, I started with 500mg three times a day. I was expecting at least some side-effects but nothing really happens after 3 months of this dosage. I have positive all EBV titres (some high) and all symptoms of active EBV. I'm taking generic valaciclovir so I'm wondering if it has same potency.
 

SOC

Senior Member
Messages
7,849
Hi, I started with 500mg three times a day. I was expecting at least some side-effects but nothing really happens after 3 months of this dosage. I have positive all EBV titres (some high) and all symptoms of active EBV. I'm taking generic valaciclovir so I'm wondering if it has same potency.

My experienced doc says he often sees less than optimal response with the generics other than Mylan and Tiva. He specifies Mylan or Tiva on the prescription.

It takes quite a while to see response if you have a chronic infection -- 3 months may be too soon to know if it's helping you. Another thing to consider -- Valtrex doesn't get through the brain-blood barrier easily (or so I'm told), so if you have a neurological infection it will take a higher dose and/or longer treatment time to get enough of the antiviral into the brain to do any good.
 

SOC

Senior Member
Messages
7,849
Just wild speculation here --

I wonder if methylation status effects response to antivirals. Daughter and I had done the Pall Protocol (which works as a methylation protocol, too) before we started Valcyte (and later Valtrex). We had less problems with antivirals than many people report.

We also got a LOT of rest, taking it very, very easy during Valcyte treatment (per Dr Lerner's orders) and dranks lots and lots of fluids. Maybe that helps the body be more able to tolerate antivirals.....?
 

Aileen

Senior Member
Messages
615
Location
Canada
Has anyone who has tried these antivirals had severe mcs or any kinds of problems with odours before going on them? If so, did the drug lessen the hypersensitivities?
 

niall

Senior Member
Messages
100
Location
Florida
I believe Drs Klimas and Rey use Famvir as their first line antiviral.

I agree with you about Dr.s Klimas and Rey using Famvir. Dr. Klimas told me that she had been using Valcyte on high doses as one would treat an infectious disease but too many of her patients were having bad side effects. So now she is using Famvir for a long period of time to achieve viral latency. One question, Is Famvir better than Valcyte when trying to control HHV6 and EBV or is there no difference in their therapeutic effects?
 

SOC

Senior Member
Messages
7,849
As I understand it, Valcyte is not better for EBV, but is more effective for CMV and HHV-6. I think it also gets through the brain-blood barrier better, so if a neurological infection with HHV-6 is suspected, it might be the better choice.

Dr Lerner has been known to use Valtrex and Valcyte simultaneously (under careful supervision) to treat people with both EBV and HHV-6 (or CMV).
 

SOC

Senior Member
Messages
7,849
Has anyone who has tried these antivirals had severe mcs or any kinds of problems with odours before going on them? If so, did the drug lessen the hypersensitivities?

Mine had mostly improved before I started antivirals. I would say that they continued to lessen while I took antivirals, so there's probably a positive effect. I might not try Valcyte first, though, if I had severe mcs -- just guessing it might be too much for the body to handle.

My sensitivities improved a lot while I was on the Pall Protocol. It could have been the protocol itself, or the methylation effects of that protocol, or simply a change in the stage of the illness for me. Who knows?
 

pine108kell

Senior Member
Messages
146
Reduced dosage down to .5 g x 1 daily. Still have additional fatigue, tachycardia, out of breath with minor exertion, forgetting everyone's name, muscle fatigue. Have all these symptoms normally but worse on valtrex.

Symptoms not nearly as bad as original dose, and I think after 10+ days at lower dose am tolerating a little better than when I reduced dose. Feels a lot like when I take antiobiotics but still don't have any idea what is actually happening. Pushing on to see if symptoms continue to slowly decrease.

One other thing I did not mention was that I got about a dozen chicken pox-like sores over my body after avout 2 days of valtrex. Don't know if this was really related to chicken pox/herpes virus or some strange drug reaction but they all dried up, scabbed over and are gone and have not returned.

Thanks for all who have shared their experiences and thoughts on this thread and privately.