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Does Valtrex cause Herxheimer reaction?

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Location
NYC
Hello all.

I started on Valtrex about 2 weeks ago, as recommended by my CFS doctor. I noticed that in that time, my general functioning has on average gone from about 50% to maybe 30% on average. Prior to going on the Valtrex, I was having more bad days at 20-30%, which is why I was told to go on the Valtrex, However, on average I was still around 50% and sometimes up to 60%.

In the first week of taking the medication, I had severe IBS symptoms. I was kept up at night by them.

In addition, I have had many days where I am mostly bedridden, or I don't get out of bed until 5pm. This is not typical for me as I usually can operate at about 50-60%.

Is it normal to have a "die off" or Herxheimer reaction to taking anti-viral medications?

The only other thing I can imagine making things worse is that it is winter, I take the subway in NYC so I have more exposure to germs, and that I traveled twice over the past 2 months for vacation and for Christmas. Perhaps this is just PEM from all of the things that have been going on. But it is significant enough that I am getting concerned.
 

geraldt52

Senior Member
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As far as I know, the short answer to your question is no, because antivirals don't kill viruses, they just prevent replication of viruses. That doesn't mean that it isn't the Valtrex making you feel bad...it has a long list of side effects. My experience was that the side effects were dose-dependent at first, and then after a period of time I had the side effects regardless of dose. You might want to lower your dose or stop it for awhile and see what happens. It shouldn't make any difference over the long haul and you should figure out if it's the Valtrex pretty quickly.
 

BadBadBear

Senior Member
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Famvir certainly caused worsening fatigue and symptoms for me. I am at 3 months exactly since starting Famvir, and am almost fuctionally back where I was when I started it. I don't know if it is technically a herx or what, but it does get better.

I get sick every winter with a relapse that lasts months, I am hoping and praying for a break in the pattern this year. That will make the last months worthwhile, as they were tough.I

Lerner's data showed that most people's functioning dropped in the first few months of antiviral treatment, with a gradual improvement over the next couple of years. Its not aneasy course but hopefully you will have improvements.
 

geraldt52

Senior Member
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...Lerner's data showed that most people's functioning dropped in the first few months of antiviral treatment, with a gradual improvement over the next couple of years. Its not aneasy course but hopefully you will have improvements.
My experience was exactly the opposite. In the beginning it "gave me a boost" but after a bit more than a year the boost had plateaued and then finally the side effects were bad enough not to be worth it. I think in retrospect that it first got me out of a bad spell, and then became entirely worthless. I saw no difference whatsoever after I was off of it.
 

BadBadBear

Senior Member
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IIRC Lerner said feeling bad at the start of antiviral therapy is predictive of better outcomes. Did you feel a boost right from the start? If so l wonder what would cause that?
 

shannah

Senior Member
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I've been on Valtrex for three months now @rayjay . Because I'm profoundly ill, I've been taking the 'low and slow' route and increases are in very small amounts.

Although antivirals don't produce Herxheimer reactions, it makes sense to me that interrupting virus replication could result in detox reactions, although I haven't found many people talking about them. I myself am experiencing both symptom exacerbation when increasing the dose with subsequent detox reactions later such as you describe.

Eventually when I plateau out, I'm not feeling any better at all but I am finding small improvements that become more noticeable over time. I'm having small 'windows' where being upright is much easier and not the battle it usually is. Reading small amounts of text is not as draining as it was and my heart rate has come down and isn't as erratic and unstable as it was.

I've read many of the same things that @BadBadBear has already commented on, such as functioning level drops when starting antiviral therapy and that initially feeling bad can be predictive of a good outcome.

Backing off for a time or lowering the dose as @geraldt52 recommended seems like a good suggestion to me.

One thing to watch for is dehydration or throwing your electrolytes out of balance. That in itself can cause extra drowsiness. Drinking 8 glasses of water daily is emphasized to flush out the kidneys.

I've also read that it's important to get as much rest as possible and never to 'overdo it'. Hmmm, easier said than done!

Did you jump in at a higher dose right away?
 

BadBadBear

Senior Member
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Location
Rocky Mountains
Eventually when I plateau out, I'm not feeling any better at all but I am finding small improvements that become more noticeable over time. I'm having small 'windows' where being upright is much easier and not the battle it usually is. Reading small amounts of text is not as draining as it was and my heart rate has come down and isn't as erratic and unstable as it was.
This is also how my improvements go. My heart rate has also come down over time. Last week I was able to read every word of a long article in one sitting. I don't think I could do that today, but maybe tomorrow or next week that light will turn on again.

I am still tired and absolutely have to pace. I am not well, but I am able to do more than at the start of AVs.
 

geraldt52

Senior Member
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1,998
... Did you feel a boost right from the start? If so l wonder what would cause that?
Very soon after starting. Just guessing, I think that I was having a bad time because of difficulty keeping viruses, that most people carry, in check. The Valtrex helped with that, and when the viruses were back in check there was nothing further to be gained. I believe this is actually true of antivirals, antibiotics, and antifungals as they affect CFS/ME...sometimes we need them for some help, but they don't really fix the underlying problem, and eventually cause problems of their own. Of course I don't know any of this, but then neither do the doctors prescribing them...
 

el_squared

Senior Member
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I have tried antivirals off and on over the past three years, always feeling hellish when I try them. I don't know why it is, but Dr. Bonilla at the Stanford CFS clinic said it is common for patients to feel worse. So I am starting again, taking a 5th of a tablet a day. We'll see what happens.
 

shannah

Senior Member
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I have tried antivirals off and on over the past three years, always feeling hellish when I try them. I don't know why it is, but Dr. Bonilla at the Stanford CFS clinic said it is common for patients to feel worse. So I am starting again, taking a 5th of a tablet a day. We'll see what happens.
I've read comments from people saying they couldn't tolerate antivirals and now that I'm on them myself, I wonder if they started with too high a dose or increased too quickly on them.

I needed to start at a very low dose and I'm finding increases need to be very tiny. I hate to think what would have happened should I have started at the full dose. In my case, I suspect it could have been highly dangerous for me. After over 3 months taking them, I'm only at about half the recommended daily dose.

I hope you find better success with taking the lesser amount @el_squared.
 

JES

Senior Member
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Is it normal to have a "die off" or Herxheimer reaction to taking anti-viral medications?
The answer to your question is no, because a herxheimer reaction or die-off can only technically occur from dying bacteria releasing toxins. All too often any reaction to a supplement or drug is shrugged off as a "herxheimer reaction", which is dangerous as it implies the problem is not the drug itself but some imaginary reaction, which does not even occur from antivirals. A batter hypothesis to explain this reaction from Valtrex, which I get as well, would be your immune system ramping up as it can better recognize and fight the virus which is now being inactivated by Valtrex. But even this is pure speculation and the bad reaction might simply be from you not tolerating the drug well.
 

el_squared

Senior Member
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I've read comments from people saying they couldn't tolerate antivirals and now that I'm on them myself, I wonder if they started with too high a dose or increased too quickly on them.

I needed to start at a very low dose and I'm finding increases need to be very tiny. I hate to think what would have happened should I have started at the full dose. In my case, I suspect it could have been highly dangerous for me. After over 3 months taking them, I'm only at about half the recommended daily dose.

I hope you find better success with taking the lesser amount @el_squared.
Thank you. Are you improving with the antiviral?
 

shannah

Senior Member
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It's still early. I can't say I feel any better yet but I've been ill for a very long time.

There are a few signs of possible improvement in some symptoms. Of course, I'm hoping more will appear over time as I'm able to increase the dose.
 

pibee

Senior Member
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446
i didnt have herx on valtrex, i started it in the middle of probably -labwork is not available for me so i have to just keep guessing - reactivated herpes viruses because I had really nasty attacks out of sudden.
My experience for now:
Valtrex
symptoms I got rid of (2 months)
(All symptoms i got in last 1 yr!)

- heart palpitations (noticable POTS)
- inappropriate sweating
-strong ear pain
-throat pain
- noise sensitivity

Reduced symptoms, but still here
-motor cortex area (bilateral) pains ---> reduced apraxia symptoms too!
- maybe 30% reversal in my mathematical deterioration (i got even dyscalculia last year after 30 years of high math skills and 20yrs with ME, my memory, logical thinking werent impaired until 1yr ago :( wish i knew that it can get much worse!!!!!!)
- occassionally slightly feel improved self esteem and anxiety

(Also had first appearancs of these symptoms last 1yr (12/2016), esp since IV ceftriaxone in August, after stopping it i started to have brain PEM attacks daily!)

- mental PEM from watching TV, reading, socializing
(Reduced 30% but still here!)


..
I severely overdid it this weekend with watching 14 hrs of series and movies in a row. I am very mad because just few months ago this didnt cause problems!!!!
I am in general mad because HUMAN FACTOR causes most of my illness progression because of bad treatments, by so called doctors.
 

Tella

Senior Member
Messages
305
Likes
185
I've been on Valtrex for three months now @rayjay . Because I'm profoundly ill, I've been taking the 'low and slow' route and increases are in very small amounts.

Although antivirals don't produce Herxheimer reactions, it makes sense to me that interrupting virus replication could result in detox reactions, although I haven't found many people talking about them. I myself am experiencing both symptom exacerbation when increasing the dose with subsequent detox reactions later such as you describe.

Eventually when I plateau out, I'm not feeling any better at all but I am finding small improvements that become more noticeable over time. I'm having small 'windows' where being upright is much easier and not the battle it usually is. Reading small amounts of text is not as draining as it was and my heart rate has come down and isn't as erratic and unstable as it was.

I've read many of the same things that @BadBadBear has already commented on, such as functioning level drops when starting antiviral therapy and that initially feeling bad can be predictive of a good outcome.

Backing off for a time or lowering the dose as @geraldt52 recommended seems like a good suggestion to me.

One thing to watch for is dehydration or throwing your electrolytes out of balance. That in itself can cause extra drowsiness. Drinking 8 glasses of water daily is emphasized to flush out the kidneys.

I've also read that it's important to get as much rest as possible and never to 'overdo it'. Hmmm, easier said than done!

Did you jump in at a higher dose right away?
Hey how r u now?
 

Tella

Senior Member
Messages
305
Likes
185
This is also how my improvements go. My heart rate has also come down over time. Last week I was able to read every word of a long article in one sitting. I don't think I could do that today, but maybe tomorrow or next week that light will turn on again.

I am still tired and absolutely have to pace. I am not well, but I am able to do more than at the start of AVs.
Hey how r u now?
 

Tella

Senior Member
Messages
305
Likes
185
I have tried antivirals off and on over the past three years, always feeling hellish when I try them. I don't know why it is, but Dr. Bonilla at the Stanford CFS clinic said it is common for patients to feel worse. So I am starting again, taking a 5th of a tablet a day. We'll see what happens.
Hey how r u now?
 

Tella

Senior Member
Messages
305
Likes
185
i didnt have herx on valtrex, i started it in the middle of probably -labwork is not available for me so i have to just keep guessing - reactivated herpes viruses because I had really nasty attacks out of sudden.
My experience for now:
Valtrex
symptoms I got rid of (2 months)
(All symptoms i got in last 1 yr!)

- heart palpitations (noticable POTS)
- inappropriate sweating
-strong ear pain
-throat pain
- noise sensitivity

Reduced symptoms, but still here
-motor cortex area (bilateral) pains ---> reduced apraxia symptoms too!
- maybe 30% reversal in my mathematical deterioration (i got even dyscalculia last year after 30 years of high math skills and 20yrs with ME, my memory, logical thinking werent impaired until 1yr ago :( wish i knew that it can get much worse!!!!!!)
- occassionally slightly feel improved self esteem and anxiety

(Also had first appearancs of these symptoms last 1yr (12/2016), esp since IV ceftriaxone in August, after stopping it i started to have brain PEM attacks daily!)

- mental PEM from watching TV, reading, socializing
(Reduced 30% but still here!)


..
I severely overdid it this weekend with watching 14 hrs of series and movies in a row. I am very mad because just few months ago this didnt cause problems!!!!
I am in general mad because HUMAN FACTOR causes most of my illness progression because of bad treatments, by so called doctors.
Hey how r u now?
 

Tella

Senior Member
Messages
305
Likes
185
Hello all.

I started on Valtrex about 2 weeks ago, as recommended by my CFS doctor. I noticed that in that time, my general functioning has on average gone from about 50% to maybe 30% on average. Prior to going on the Valtrex, I was having more bad days at 20-30%, which is why I was told to go on the Valtrex, However, on average I was still around 50% and sometimes up to 60%.

In the first week of taking the medication, I had severe IBS symptoms. I was kept up at night by them.

In addition, I have had many days where I am mostly bedridden, or I don't get out of bed until 5pm. This is not typical for me as I usually can operate at about 50-60%.

Is it normal to have a "die off" or Herxheimer reaction to taking anti-viral medications?

The only other thing I can imagine making things worse is that it is winter, I take the subway in NYC so I have more exposure to germs, and that I traveled twice over the past 2 months for vacation and for Christmas. Perhaps this is just PEM from all of the things that have been going on. But it is significant enough that I am getting concerned.
Hey how r u now?