The 12th Invest in ME Conference, Part 1
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getting worse on Valtrex - flu-like crashes / please, help

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by MartinK, Feb 4, 2018.

  1. MartinK

    MartinK

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    Hi all!
    Im 6 weeks on Valtrex (2 x 1g) and Isoprinosine + 3g L-Lysine (its for unclear problems with EBV - looks like reactivated, I had mononucleosis 10 years ago without treatment)

    Last two weeks my symptoms getting worse - more fatigue, and after every activity huge flu-like crash for 2-3 days. My inflammation is worse too, OI too - everything has worsened.

    Im on big dilema now - its Valtrex good for me or not? I do not want another worsening anymore, now Im on bed for all day...its crazy - because, I do not know whether it's a reaction or not :-/

    Is here anyone with good experiences on this drug? I do not want to destroy youself more and more.
    Interrupt or not? I read something about the aggravation in dr. Lerner , but Im not sure if its this or not...

    worse are:
    -flu like crashes
    -inflammation (most in the morning - body, legs)
    -OI
    -fatigue
    -long exhaustion after small activity
    -cold hands and feets

    Thanks a lot for every experience with this and help!

    Martin
     
  2. Learner1

    Learner1 Forum Support Assistant

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    Hi Martin,

    Valtrex didn't make me worse.

    Is it possible that you have some other infection that its not effective on? Or could it be that your dose isn't high enough?

    Also, my doctor has me on 4g of lysine a day.

    Hang in there...
     
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  3. pattismith

    pattismith Senior Member

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    I had bad reaction with many drugs, and especially with antibiotics (Doxy/azythro), and I suspect it disrupted my thyroid hormons which were already in a bad state (even though any endocrinologist would have considered my panel as normal)

    Not sure if my advise is relevant for antiviral drugs, but I would advise to do a thyroid test panel before starting any treatment + reverseT3 and calculate the fT3/rT3 ratio. If the ratio is low, solving the Low T3 Syndrome seems to me the first thing to do...
     
  4. MartinK

    MartinK

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    @Learner1 Hi Sharon, now looks like, only EBV is reactivated...I will write to you, when I come back from KDM! Go to Brussels is Tuesday! ;-) thanks! ...and, for sure, I will use only 1g/day Valtrex for next days...
    But, Im really interesting, whether it is just a response to successful treatment! :)

    @pattismith Hi! Doxy and Azi was with no problem for me, but its not work for me - it was Lyme treatment 2 years ago...but now its Lyme looks good - or, its not a main problem for me, Im sure...
    Thanks for info with thyroid! I have some tests for thyroid and every doctor say - its good!
    And, you have simmilar problems to me? fatigue, inflammation, flu-like symptoms?

    thanks a lot! Martin
     
  5. pattismith

    pattismith Senior Member

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    @pattismith Hi! Doxy and Azi was with no problem for me, but its not work for me - it was Lyme treatment 2 years ago...but now its Lyme looks good - or, its not a main problem for me, Im sure...
    Thanks for info with thyroid! I have some tests for thyroid and every doctor say - its good!
    And, you have simmilar problems to me? fatigue, inflammation, flu-like symptoms?

    thanks a lot! Martin[/QUOTE]

    The adverse effects I had where head pressure, brain fog, fatigue/exhaustion, muscle pains and weakness....
     
  6. pattismith

    pattismith Senior Member

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    My thyroid panel was always fine in the eye of the endocrino, but my fT3 was close to minimum.

    Then I did a rT3 test on my own and discovered it was very high, with a fT3/rT3 ratio very low....

    the side effects didn't resolved when I stopped the ATB, so i am now working on my fT3/rT3 ratio to improve before considering any other treatment...
     
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  7. Mariesak

    Mariesak

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    Yes, I get a lot worse before getting better on any antiviral. I’ve been on Valtrex for 8 months. Even starting with a low dose and increasing very slowly, I had several months of feeling awful. I didn’t see any improvements until the 4th month. I just kept reminding myself that it was a good sign that the Valtrex was working. It is discouraging to be taking something that is supposed to help you, but you feel much worse. For me, in the long run, it’s always been worth it.
     
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  8. geraldt52

    geraldt52 Senior Member

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    Flu-like symptoms are listed as a "rare" side effect of Valtrex, but in my experience rare side effects are more common than most people imagine. In any event, it doesn't matter if only 2% experience the side effect if you are one of the 2%.

    I'm not much of a believer in the "worse before getting better" theories that are so popular...outside of the strictly defined herxheimer reaction, which does not apply to antivirals anyway. I suspect what is really going on is that people have a side effect of the Valtrex when they start it, that goes away over time.

    In the case of Valtrex, I immediately improved on it, quickly plateaued, and then noticed no difference (CFS-wise) whatsoever whether I was on or off it...all of which would be consistent with the Valtrex stopping replication of a probably common virus that I was having trouble keeping under control. I finally stopped it entirely because the muscle and joint pain became unbearable.
     
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  9. MartinK

    MartinK

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    I had these symptoms the same before using Valtrex - he just made them worse, no another, new symptoms with it.
    This is why I think about my bad reaction after few weeks on this antiviral.
    Thinking about - its a good reaction? - continue Valtrex / it a bad reaction? - stop Valtrex before some damage

    decisions are difficult...:-/

    Martin
     
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  10. shannah

    shannah Senior Member

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    @MartinK
    Some people are using Celebrex for the inflammation with Valtrex or Valcyte.
    I find it helps even at a smaller dose.
     
  11. MartinK

    MartinK

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    @shannah
    thanks a lot! I hear this combo first time! You have a personal experience with it?
    Or, anyone else?
    thanks, Martin
     
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  12. shannah

    shannah Senior Member

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    Yes, I'm on this combo.
    The effect of Celebrex increases over a few weeks.
    The only challenge with it is the effect it has if you have high blood pressure. It can make it go higher.

    Just to let you know that some people take the 'start low and go slow' approach.
    This seems to minimize reactions.
    I myself increase in small doses by only 125 mg or less at a time.

    Hope you can find a workable solution @MartinK .
     
  13. BadBadBear

    BadBadBear Senior Member

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    Celebrex also has its own antiviral properties. It really helps with my EBV related pain and inflammation.
     
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  14. Mariesak

    Mariesak

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    I’ve been on Celebrex for nearly 3 years. It certainly helps with pain an inflammation, but I don’t notice that it has any antiviral benefits.
     
  15. JES

    JES Senior Member

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    @MartinK I had the same type of response from Valtrex and had to stop after a few weeks on it. Since you are already 6 weeks in, it would perhaps make sense to continue for another 6 weeks at least, as many people who respond to Valtrex have seen improvement start around the three months mark. But for sure you better discuss with a doctor for medical advice, Valtrex is known in rare cases to cause reduced white blood cell counts and Valtrex is generally not recommended for immunocompromised people (by immunocompromised I don't mean CFS).
     
  16. BadBadBear

    BadBadBear Senior Member

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    It does according to a recent study. Herpes viruses need COX2 for efficient replication, and inhibiting it reduces replication and frequency of reactivation (Celebrex being a potent COX2 inhibitor).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328426/

    "As mentioned above, many herpesviruses significantly up-regulate COX-2 and to a lesser degree COX-1. Virally-induced up-regulation of COX enzymes is important for efficient viral replication and COX inhibitors exhibit anti-herpetic properties reducing both virus replication during lytic infections as well as the frequency of reactivation of latent infections."
     
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  17. used_to_race

    used_to_race

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    @MartinK I took Valtrex 1g 3x per day for 5 weeks and also got worse like you're saying. I was at 80% before and slowly dropped to 60-70% over the 5 weeks. Then suddenly I felt very sick, was at maybe 25% so I stopped the Valtrex. I recovered back to 80% after a very scary week or so of resting. So maybe it's useful for you to know that in my case, the worsening from Valtrex was not permanent. Your case may be different so I can't give you advice but that's my experience.
     

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