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Acyclovir for EBV - Quit or Push Through?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by AlmostEasy, Mar 23, 2016.

  1. AlmostEasy

    AlmostEasy

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    Alright so I had mono at about 21 years old (26 now) and it wasn't that bad honestly, I was just extra tired for a month and it then seemed to fully go away. At about 19 I started to decline into what now feels similar to ME/CFS. A great deal of cognitive disturbance, working memory, thought block, major fog / out of it, emotional block, cut off, etc. You can find my basic disease overview here, including my EBV labs.

    So one of the things I'm doing is sort of like supplement / treatment semi educated roulette. I'm on high dose methylation and it's helping to a certain extent, but clearly isn't the root cause. I'm considering strongly now that it's a neural dominant Lyme or a viral issue (with rationale in my Google Doc), so I started with the viral issue as it's so long term to see any results, and Acyclovir was covered by my insurance completely.

    I started Acyclovir 3/3/19 and got to the dose of 800 mg x 5 daily in about 3 days (fast titration). Just yesterday I began noticing some extra fatigue along with a very mild, probably 1.5 / 10 sore throat, lymph node pressure, achy joints, and achy facial sinuses. My temperature usually floats around 97.0 +/- 0.5 degrees and it's jumped up to 99.0.

    I've read before that this can be a good thing as those that have gone on antivirals before have reported re-activation and then subsequently improving beyond what they were earlier, the treatment was working. To have this potentially be doing this so soon is a bit concerning as I'm in the middle of some medical schooling and I can't afford to go into a full blown relapse of EBV and be out of it for a month, it would literally put me an entire year behind if I had to drop down to the next cohort for medical leave, they're behind.

    Could anyone more experienced or knowledgeable about this comment? If it's just going to be like 2 weeks of this mild re-activation that's fine but if it's destined to become a full blown relapse of doom I'm just going to stop for now.

    What's interesting also is that I don't normally feel like this so I don't know if that means that it wasn't contributing to my fatigue AT ALL and now I've stirred it up or if it was just contributing to it in a different manner? This feels like how classical EBV is described where as my fatigue before was almost completely a mental fatigue. I do feel cognitively more or less the same, perhaps even a little better (I have started modafinil again which is incredible for me cognitively) so that's a plus. I just don't know if I should just let sleeping dogs lie or if I'll benefit from seeing this thing through. It's hard to say.

    Thanks,
     
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  2. Webdog

    Webdog Up to 91% remain undiagnosed

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    I have some of your disease symptoms. However, I've not had any adverse reactions to Acyclovir.

    My new doctor (Chheda at Open Medicine Institute) tells me that Valacyclovir (Valtrex) is more effective than Acyclovir. I've recently transitioned to 4500mg/day Valacyclovir, but haven't noticed any significant changes. Surprisingly, my insurance covers both.

    Considering your symptoms, have you been tested for Myasthenia Gravis?
    http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

    Also, I haven't tried modafinil, but have found occasional Vyvanse (10-20mg) helpful with brain fog.

    Hope you find some relief.
     
  3. AlmostEasy

    AlmostEasy

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    Have you been finding relief with Acyclovir, cognitively? What kind of time frame have you been on it?

    Yeah I used Ritalin, Adderall, and Vyvanse with success. Great stuff to have when needed.
     
  4. Webdog

    Webdog Up to 91% remain undiagnosed

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    Unfortunately, no lasting relief with Acyclovir over 9 months. I did feel better around the 3-4 month mark, but it didn't last.

    I'm still ramping up to my full dose of Valacyclovir 1500mg tid. So it's too early to say.

    I tolerate occasional Vyvanse significantly better than Ritalin or Adderall XR. Daily stimulants make me crash badly.
     
  5. AlmostEasy

    AlmostEasy

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    I see. Did you have EBV titers drawn? Were they elevated?

    Also, I'm not sure if you're aware, the studies show that if you have EBV + co-virus then the Acyclovir / Valtrex will be uneffective for it whereas with EBV alone it would help. The fact that it helped (knowing to what extent might help) may indicate that you have a co-virus and perhaps something more powerful might help.
     
    Last edited: Mar 23, 2016
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  6. Webdog

    Webdog Up to 91% remain undiagnosed

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    Yes, I have elevated EBV and HHV-1 titers. Other viral tests were negative.

    I was not aware of those studies. Thanks for the heads up.

    Acyclovir was ineffective for me. If Valacyclovir (Valtrex) is ineffective, the next antiviral to try will be Valgancyclovir (Valcyte).
     
  7. Matt_C

    Matt_C Senior Member

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    Hey.

    Thought i'd add a little about my experience with antivirals. You can search for posts from me here to see what I've written when I was taking them. Basically i'm under the impression that a herxheimer reaction (basically an increase in symptoms similar to what you described) should occur after starting antivirals, and that this predicts a good response to antiviral therapy. I followed a treatment protocol by Dr A. Martin Lerner (links below), although I only did it for nine months. He recommends treatment for a minimum of one year and says that benefit is not apparent until around 3.5 months for EBV and 4-6 months for HHV-6. He recommends Valaciclovir for EBV and Valganciclovir for HHV-6, which were my diagnoses. I don't have CMV. He doesn't talk about acyclovir for these infections but recommends Famvir as a substitute for valaciclovir.

    Here's a link to a treatment guide developed by Dr Lerner :

    http://www.google.com.au/url?sa=t&r...yNWoMUGKqXXi0_Usg8l1tg&bvm=bv.117604692,d.dGo

    This is the main webpage: http://www.treatmentcenterforcfs.com/

    Hope this helps a little.
     
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  8. AlmostEasy

    AlmostEasy

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    Aha, right in Dr. Lerner's treatment guide:

    "An initial worsening of symptoms with normal laboratory at a two-week special visit with worsening symptoms is a Jarisch Herxheimer reaction and predicts a good response. Initial benefit is usually not noted for the first six weeks’ of therapy and then occurs thereafter. A minimum period of therapy is one year"

    I strongly disagree that it's a Herx reaction as that is not possible with a virus, but practically it is useful. I think it's more likely that it is kicking up the virus and causing a re-activation, or giving the immune system breathing room to actually mount an immune response to start taking care of it. Either way, good stuff.

    @SOC @minkeygirl @Hip - Just wondering on your guys' input if you have time, noticed that you post quite often in here. Thanks.
     
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  9. ebethc

    ebethc Senior Member

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    Hi @Webdog

    How is the valtrex working for you?

    Also, does valtrex cause weight gain? I've read this here and there, but not heard directly from anyone taking it, or from a doctor.

    thanks
     
  10. Webdog

    Webdog Up to 91% remain undiagnosed

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    @ebethc, thanks for asking. :)

    I've had minor improvements over the 3 months on 4.5g Valtrex per day. Slightly improved PEM (crashes lasting 2 days instead of 3), brain fog, and sleep. How much of this is due to Valtrex and how much to my other treatments (Rifaximin, methyl B12, methyl folate, low dose naltrexone), is hard to say.

    My doctor didn't mention anything about weight gain, but yes I have gained a couple pounds. I'm struggling to get my bmi back to around 25. Which, as many know, is difficult when exercise causes crashes.

    Here are some changes I've noticed:
    • The slightly painful subsurface "bumps" on my upper lip area, which I've had much of my life simply went away after a month on Valtrex. They always felt like small unerupted cold sores, but rarely got to the stage where they were even visible.
    • My chronic sinusitis is probably 70% gone. For the first time in 15 years, I'm breathing out of both nostrils. This alone could be the reason for my sleep improvement. This change has been nothing short of amazing.
    • My sense of smell, which I lost 2 years ago has started to return. It's perhaps only 20% of normal for me, but it's nice to start to smell things again.
    • Liver enzymes slightly elevated, but apparently not enough to be a cause for concern. I have one drink per week, partially because of some alcohol intolerance, and partially because of nonalcoholic fatty liver disease, which the specialist suspects is viral in cause.
    • Still mostly housebound. But I now get out for a couple hours twice a week, instead of 0-1 times a week. It may not seem like much to most people, but to me it really is amazing that I can do this now. I still crash afterwards, however.
    My Valtrex has just been increased to 6g daily, hoping for more response. Doc would have preferred to switch me to Calcite (Valgancyclovir), but that's not covered by my insurance. 6g/day is apparently the max Valtrex dose.

    Edit: More about Valacyclovir dosage in this thread.
     
    Last edited: Jun 6, 2016
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  11. ebethc

    ebethc Senior Member

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    @Webdog - good to hear you're making some progress, however incremental... From everything that I've read, it can take a LONG time to see improvement on anti-virals for some people, so hang in there.

    I've had chronic sinusitis for as long as I can remember and nothing seems to help. good to know that an AV can help that, too.

    Did you discuss acyclovir/Zovirax with your doc? I'm wondering if that has a lower side effect profile than Valtrex. I really can't gain any weight, and since the course of tx on AV's is > 1 year, it seems like it makes sense to use something that's at least weight neutral.

    thanks.
     
  12. Webdog

    Webdog Up to 91% remain undiagnosed

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    @ebethc, Thanks for the words of encouragement. "Baby steps", as my doctor says. ;)

    Valacyclovir is absorbed much better than acyclovir, according to my doc. Valacyclovir is kind of a "pro-acyclovir".

    A previous doctor (a GP with little ME/CFS experience) had me on acyclovir 1.6g/day for 9 months, and I did have a little bit of improvement with the bumps I described and with sinusitis. But brain fog and PEM didn't improve at all.

    Neither acyclovir nor valacyclovir have any significant negative side effects for me.
     
  13. ebethc

    ebethc Senior Member

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    @Webdog - who is your doc? who was your previous doc, and why did you switch? thanks
     
  14. Webdog

    Webdog Up to 91% remain undiagnosed

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    @ebethc - Dr. Bela Chheda at the Open Medicine Institute in Mountain View, California.

    Chheda is my first ME/CFS doctor. I was diagnosed just over a year ago (thanks to the Institute of Medicine report). The other doctor I mentioned continues to be my HMO primary care physician.

    It's quite obvious I've had ME/CFS (viral onset, relapse/remit) for nearly 4 decades, but doctor after doctor after doctor misdiagnosed me, dismissed my symptoms as psychological, or just plain ignored me.

    Will antivirals help much at this late disease stage? Does anybody really know? But I'll take any improvement in quality of life, however small.
     
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  15. ebethc

    ebethc Senior Member

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    @Webdog - I'm in the same boat, i.e., decades of illness, tons of money spent going down the wrong roads and taking time off work to rest & get my strength back... I'm not as sick as others, but my lame immune system has been pretty devastating to my quality of life and financial security.. I don't have the money to go to OMI or Montoya's clinic, but I'm not sure that I need to at this point... I have a very collaborative, long-term PCP who will order tests and let me try prescriptions... If I ever have the money, I will definitely try either OMI or Montoya's clinic. Glad you found help!
     
  16. TrixieStix

    TrixieStix Senior Member

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    Webdog,

    Any suggestions for preparing for an appt with Dr. Chheda? I will be travelling there in January to see her. This will also be my first time seeing a ME/CFS specialist. My primary care doctor was willing to diagnose me but he thinks if I can get to OMI then that would be a better option.

    What tests did they do? I was thinking of having my primary doc here do the NASA 10 minute lean test to check for Orthostatic Intolerance, but I'm wondering if that is part of the initial exam at OMI?

    How long after your appointment was your follow-up appt?

    No worries if you can't or don't want to answer any or all of my questions!
     

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