valtrex herx

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Jan 18, 2008.

  1. heapsreal

    heapsreal New Member

    Been on valtrex about 4 days now, first 3 days had no energy at all, bed riden with bad headache, 4th day feel much better, getting sort of cold chills though. Just wondering anyone else had similar experience when on valtrex and if they had any long term success.

    Ta
  2. swedeboy

    swedeboy Member

    Hi there, I started 1000mg 4x per day of Valtrex on 12/27/07.
    So far the only side effects that I have experienced are upset stomach, bloating, gas, nausea, loose bm's, some mild low back pain. I've been drinking nearly a gallon of water per day. I drink about a quart of water with every 1000mg pill. My Primary care physician said that if I don't see results in one month then I should stop taking it. I'm still waiting to hear back from Dr.Montoya for his input on my valtrex dosing.

    Hope this helps,

    Best,
    Swedeboy
  3. ScottInCalifornia82

    ScottInCalifornia82 New Member

    I was valtrex for about 3 and half months and I definitely saw improvement from it.

    Scott
  4. aftermath

    aftermath New Member

    What did you guys have high titers to?
  5. swedeboy

    swedeboy Member

    I have high IgG titers to EBV and HSV-1
    Dr. Montoya said that my IgG titers for HSV-1 were one of the highest he's ever seen, his exact words were "it's of the charts" My IgG to HSV-1 was >6.0 and it has to be <.90 to be positive. Ironically I've never had a cold sore! haha My IgG titers to EBV are relatively high but I don't have the exact numbers in front of me.

    SMiles, Swedeboy
  6. ladybugmandy

    ladybugmandy Member

    hello. i noticed that for me, the real "herx" started quite late when i was on valcyte...like 2 months into the treatment. the doctor i was seeing at the time told me that was unusual....he seemed to imply that that might not be a die-off reaction.

    with the valtrex, i haven't really had a "herx"...though i am at the 2 month mark now and i am not feeling too good. its too early to know if it is a definite worsening however.

    i don't even know if die-off can occur that long into treatment...maybe i get sick for other reasons.

    sue
  7. ladybugmandy

    ladybugmandy Member

    hi jam! i think a slight fever might be a good sign but i am not sure. i had that with valcyte but not valtrex. i asked dr. lerner about it when i was on valcyte and he said "well..something is happening."

    thats a good question about herxing....i wish i knew!

    sue
  8. sascha

    sascha Member

    i finished a 5+ month course on valcyte June 6.

    how can you differentiate between effect of a drug itself, and herxing? i don't get this at all.

    i haven't really felt anything from valtrex. i felt PLENTY on the valcyte, but there again, didn't know whether it was herxing or just impact of the valcyte.

    but i started valtrex experiencing severe IBS which started up before i quit the valcyte. i'm worried valtrex might make it worse, but so far it hasn't seemed to.

    Sascha
  9. ladybugmandy

    ladybugmandy Member

    sascha....the valcyte made my IBS worse, too....but so far, not with the valtrex....

    no fool....we know antivirals dont actually cause "herxheimer" reactions. that is why doctors call it a "herx-like" reaction. most people use the term "herx" loosely on this board.

    sue
  10. marti_zavala

    marti_zavala Member

    "how can you differentiate between effect of a drug itself, and herxing? i don't get this at all. "

    Hi Sachsa,
    This is the $64,000 question. Here is my opinion.

    A herx or herx-like reaction should resolve itself. If a supplement that isn't very strong is used and you not severely ill, then I think the herx should last a week or less. If a strong supplement or drug is used or you are severerly ill, then I would think that the effect could last a month or so.

    A negative effect of a drug would not resolve itself.

    This is based on my experience having high viral loads to EBV, HSV and CMV with possible as yet undiagnosed Chlamydia pneum and more supplements than medications.

    It is my opinion that Valcyte is a very strong drug and highly conducive to toxicity. I will personally wait until several studies are done in terms of effectivness.

    I appreciate those who are willing to try it in order to improve their health.

    Some people use muscle testing to determine if a supplement or medication will be helpful. I have used BioMeridian testing to see if something will help or harm.

    If you are taking a medication, I would assume toxicity first (unless it was an antiviral or antibiotic or antifungal - then assume die-off).

    Marti
  11. Mikie

    Mikie Moderator

    Anything which can cause dieoff, even if it doesn't directly kill the pathogen, can cause Herx-like symptoms. My symptoms on Famvir differed from those due to Doxycycline only in that the AV made me chill and the ABX made my torso burn.

    There are actually two phases when on takes a med which kills pathogens. The first is an immine response. When we kill pathogens, or casue them to starve to death in the bloodstream, they become alarmed and more active. This gets our immune systems' attention and we may feel fluish with headaches, chilling or feeling hot, swollen lymph nodes, and aching. Once the pathogens die off, the body produces purging to get rid of them as they turn toxic. This can cause profuse sweating, nausea and/or severe diarrhea from hell. The sweat and stools have the distince odor of death.

    As bad as this sounds, one feels better once the dead pathogens are gone. Different pathogens have different reproduction cycles in which they leave their host cells and die in the bloodstream. One soon notices a cycle of the Herx or Herx-like reaction and it forms a pattern. This is actually good because it means the treatment is working.

    Love, Mikie
  12. ladybugmandy

    ladybugmandy Member

    i have been on valtrex for 2 months now and am getting cold sores i never thought i had!? could this be a good sign???

    thanks
    sue
  13. deliarose

    deliarose New Member

    I was Rxd Valtrex for high EBV IGG titers.

    3 grams a day. For the most part I feel much better, esp. cognitively. I'm wondering if it's because of modulation of adenosine.

    If I don't feel worse at some point, does this mean there's no viral killing going on?

    Badly phrased... but ...
  14. ladybugmandy

    ladybugmandy Member

    aepalisades told me that lerner told her yesterday that if you have been sick a long time, you do not recover as well. i knew this already, but it is sobering to hear anyway.

    dr. lerner typically doesn't say things like that...i get the feeling he likes to keep his patients very hopeful.
  15. deliarose

    deliarose New Member

    Kelly. I'm not real clear on adenosine, so take this with a fistful of salt (esp. if you have POTS! Ha. just my little joke.)

    Adenosine levels are an important regulator of phospholipid methylation. Phospholipid methylation is critical for solid state signalling in the brain .. and "solid state signalling appears to be a critical mechanism by which dopamine promotes attention."

    Richard Deth, "The Molecular Origins of Human Attention - The Folate-Dopamine Connection" Kluwer Academic Publishing. 2003 page 35.

    He also says that adenosine levels vary in a cyclic manner (circadian rhythm) and levels are highest at the onset of sleep.

    "Adenosine formation is greatly increased in several psychiatric illnesses, including some types of autism."

    And if memory serves, some DAN! docs say that Valtrex modulates adenosine.

    Of course the benefits I am seeing from Valtrex may have nothing to do with adenosine modulation and everything to do with tamping down neurological inflammation, or something else entirely!

    I have no clue.

    I do know that the Vitamin Diagnostics Panel measures adenosine (Plasma nucleoside). Range is 16.8 -21.4 and my level back in August 07 was 20.6.

    At that point, I had been on the simplified 5 for 7 months.

    I haven't retested since then.

    That's all. Clear as mud, huh?


  16. deliarose

    deliarose New Member

    Kelly. I'm not real clear on adenosine, so take this with a fistful of salt (esp. if you have POTS! Ha. just my little joke.)

    Adenosine levels are an important regulator of phospholipid methylation. Phospholipid methylation is critical for solid state signalling in the brain .. and "solid state signalling appears to be a critical mechanism by which dopamine promotes attention."

    Richard Deth, "The Molecular Origins of Human Attention - The Folate-Dopamine Connection" Kluwer Academic Publishing. 2003 page 35.

    He also says that adenosine levels vary in a cyclic manner (circadian rhythm) and levels are highest at the onset of sleep.

    "Adenosine formation is greatly increased in several psychiatric illnesses, including some types of autism."

    And if memory serves, some DAN! docs say that Valtrex modulates adenosine.

    Of course the benefits I am seeing from Valtrex may have nothing to do with adenosine modulation and everything to do with tamping down neurological inflammation, or something else entirely!

    I have no clue.

    I do know that the Vitamin Diagnostics Panel measures adenosine (Plasma nucleoside). Range is 16.8 -21.4 and my level back in August 07 was 20.6.

    At that point, I had been on the simplified 5 for 7 months.

    I haven't retested since then.

    That's all. Clear as mud, huh?


  17. deliarose

    deliarose New Member

    Take this observation for what it's worth: my brain function does seem better even in just one week on Valtrex.

    Actually, at one point, I felt I was kind of speeding, so I dropped the dose down. It's a bit like being on an amphetamine & my typing is so much better like I have better motor co-ordination or whatever that phrase is.

    This is interesting. I wish Rich or someone else would chime in on this.

    D.
  18. viralfree

    viralfree New Member

    Aside from whether "herx or herxing" is scientifically accurate terminology, (it does seem to be a generally understood word by docs & patients alike to communicate a bodily reaction), I appear to be herxing from 500mg daily of Valtrex. I'm into week 3.

    The notations of patients on Valtrex are helpful, especially those using it post-Valcyte, thank you, and i'd like to hear from other's regarding dosing and herxing/effects.

    After the Valcyte (9months) i felt pretty good.

    My current herxing is similar to the Valcyte only not as intense: fatigue easily, require daily naps, difficulty staying asleep, burning bottom of the feet, some agitation, acrid perspiration, thirst, IBS, overload from aural stimuli, ...fortunately my cognitive functioning has remained improved.

    VF
    [This Message was Edited on 07/30/2008]
    [This Message was Edited on 07/30/2008]