Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CEBV, High Anxiety and Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Pyr2, Oct 9, 2015.

  1. Pyr2

    Pyr2

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    Hi everyone, if you have Chronic EBV, I would love to hear your experiences.

    When this reactivated in 2013, it was like a switch went off in my brain and I became super anxious and jittery. If someone told me I had a thyroid problem, I would have believed them.

    Through the long and torturous diagnostic process (still sort of underway today), there have been bouts of this really rammy, jumpy, panicky feeling. Sort of worse in the morning till lunchtime.

    I find that it has gotten increasingly WORSE on the Valcyte (Im on week 6). I feel shaky and going nuts.

    It doesnt help that I am still going through tests. Im so concerned how much this chronic infections has damaged me. We are sure I have CEBV, but not sure its CFS/ME. (I dont have fatigue and I have mainly full body nerve issues from the CEBV including a wasting calf muscle). I feel like its infected my brain/nerves. I feel like I need an IVIG of something to stop this. Running around from dr to dr is just taking so much time. I can't believe its 2 yrs into this and Im no closer to feeling better or an answer.

    I wonder if the Valcyte reaction is a good thing.

    Thanks. Would love to hear from anyone with CEBV.
     
    Mackee likes this.
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Let me start by saying I'm not the smartest one here by a long shot. So I'm not 100% sure if what I'm saying is conpletely accurate.

    I didnt think Valcyte was for EBV. More for CMV. But I could be wrong. Some people get really sick from Valcyte. I can't take more than 450 mgs without problems.

    Also IVIG replaces things missing from the immune system but you would still need something to stop the virus from replicating
     
    Mackee likes this.
  3. Pyr2

    Pyr2

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    Thanks Minkey. I have CMV and EBV. My dr is away on vacation (of course!) but I emailed her why am I not on Valtrex as well. I think I have something called mononeuritis multiplex. I have roving nerve compression syndromes all over my body. This madness has to stop. I went to the hosp while my dr was away last week and they looked at me like I was nuts and of course didn't even call a neurologist. Im so sick of this very clear neuropathy issue not being taken seriously!!!!! My neuro appt isn't until two weeks. I do see an infectious disease dr next week. Im sure something else will go wrong by then. I think for now I am stopping the Valcyte until I get some clarity.

    Interestingly enough, I did see a hematologist/oncologist last week (its a long story), but his feeling on this whole thing is that cannot be too much of a player b/c by PCR in blood I am NOT POSITIVE for ebv or cmv. He said I should not even be on valcyte b/c my pcr test shows that I don't have a big viral load. So where is all this nerve craziness coming from??? Ugh. Thanks.
     
  4. Tammy

    Tammy Senior Member

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    I think EBV can wreak havoc on the CNS................I'm not sure what roving nerve compression syndrome is but EBV can definitely affect the nerves. I am currently treating CEBV because I think it is the main culprit of my CFS. I've never tried Valtrex or Valcyte but I know a lot of others on PR have. As far as EBV testing is concerned.........there's a lot to be desired. I know at one time that I had high viral titers and I don't give a lot of credence to the testing that comes afterwards. JMO.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    As I said I'm no expert but from what i've learned her, Herpes viruses rarely show in the blood, but for those of us with ME/CFS, it is significant if our labs still who we have high titers.

    I saw an ID doc a few months ago. He ran CMV by PCR which was negative of course so he wouldn't RX Valcyte but he is monitoring me. I said how do you explain how I got a virus 20 years ago and am so ill I rarely leave my house. I got no answer.

    A lot of the docs who specialize in treating us believe that it does matter what our viral levels are. Dr Lerner and Montoya use AV's. I don't know where you are but I found an NP who gets the whole viral thing and rx's famvir for me.

    It's hard not to be disappointed by doctors but if you read around here you will see most of us have been. So if you lower your expectations, it won't be so discouraging. And maybe look for a doc not so mainstream.
     
    Mackee likes this.
  6. Hip

    Hip Senior Member

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    Is anxiety the major symptom you have, and that you want ot treat?

    Have you tried any anti-anxiety medications prescribed by your doctor?

    Generally speaking, trying to treat anxiety by treating an underlying viral infection that you think may be causing it may not actually be that helpful, partly because antivirals are not that effective (though Valcyte is one of the strongest — but also one that is not well tolerated, with people sometimes reporting that Valcyte causes anxiety).

    You will likely get better and faster results by trying anti-anxiety medications. SSRI drugs are often used to treat anxiety, and Lexapro (escitalopram) is probably the best tolerated SSRI.


    I myself had severe generalized anxiety disorder, and found the following supplements very effective as a treatment:
    Completely eliminated my severe anxiety symptoms with three supplements!

    So those supplements are an alternative you may want to consider instead of pharmaceutical anti-anxiety drugs.



    Anxiety has not been directly linked to EBV; though generalized anxiety disorder is often found in ME/CFS, and ME/CFS can appear after EBV.

    Anxiety has however has been linked to cytomegalovirus infection, and also infection with the bacterium Helicobacter pylori.


    Have you ever been checked for high titers to cytomegalovirus?
     
    Last edited: Oct 11, 2015
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  7. Tammy

    Tammy Senior Member

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    @Hip................don't really want to make an argument about whether or not EBV can cause anxiety. For me when the EBV was at its worst.. (very high titers).......my whole CNS was a disaster causing all sorts of weird things.....and anxiety was one of them. My brain felt inflamed and hot. The poster did say that when the EBV was reactivated in 2013...........it was like a switch went off in her brain and she became super anxious and jittery so it is possible especially during episodes of high viral titers.

    Having said that........I am totally for anyone taking anti-anxiety meds .......while they are working on anti-viral remedies.
     
    Last edited: Oct 9, 2015
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  8. Hip

    Hip Senior Member

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    I had an experience of catching an enterovirus, and this virus triggering significant anxiety disorder. A few others who caught the same virus from me also developed anxiety disorder, one person very severely. That enterovirus later I believe led to my ME/CFS; but the first major symptom it caused was anxiety.

    So I have personal experience of a virus triggering generalized anxiety disorder (GAD). But if you search for Epstein-Barr virus anxiety or likewise enterovirus anxiety in Google, you won't see much in terms of anecdotal accounts of these viruses causing anxiety. Around 95% of the adult population has EBV, so if it were if it were even an infrequent cause of anxiety, I would have thought you would find lots of accounts of this online.

    You also won't find much in the way of studies linking EBV or enterovirus to anxiety. There is this study which found anxiety as a personality trait is associated with higher titers to EBV; but I don't think that is the same as anxiety disorder.

    It's quite possible that EBV reactivation is causing @Pyr2's anxiety, but even if that is the case, it may take months or years to get his EBV titers down, because EBV takes time to treat. (Although @Pyr2, see the info on Zantac below, which possibly might fix your EBV reactivation within 48 hours!).

    I am sure @Pyr2 does not want to spend years suffering from anxiety, which I know all too well is a horrible symptom. So if it were me, I would treat the anxiety now with anti-anxiety medications, or try the anti-anxiety supplement detailed on my thread given above, and then address the chronic EBV reactivation.



    Tagamet or Zantac Treatment of Epstein-Barr Virus

    In terms of treating chronic EBV reactivation, @Pyr2, one thing you might want to look into is using antihistamine H2 blocker drugs like Tagamet (cimetidine) or Zantac (ranitidine). Zantac has less side effects than Tagamet, so it's probably a better option. Though I believe Tagamet works for more people.

    Dr Jay Goldstein used H2-receptor blockers off-label for treating mononucleosis and ME/CFS, and claimed to get good results.

    Here is one recent forum thread about the use of Zantac to fix apparent EBV reactivation:
    Here is another forum thread about Tagamet helping an ME/CFS patient make a significant recovery.

    And here is a thread about Tagamet helping an ME/CFS patient improve a bit.

    Some more info on Tagamet here and here.


    Note though that this study that found Zantac had only a small effect on mononucleosis. But then mononucleosis is not ME/CFS.

    You might consider trying Zantac for your EBV anyway, @Pyr2; it is an over the counter drug.
     
    Last edited: Jan 9, 2016
  9. Tammy

    Tammy Senior Member

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    Did you read my post? I said I am all for taking anti-anxiety meds while taking anti-virals. As far as any studies linking anxiety with EBV............I'm not really impressed about studies or no studies...........I know what I experienced..............I'm sure researchers aren't spending alot of time/energy in researching whether or not EBV causes anxiety anyway.
     
  10. Hip

    Hip Senior Member

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    You experienced high EBV titers and anxiety. That does not mean one caused the other, even in your individual case.

    (I know I repeated what you said about the good idea of taking anti-anxiety meds; but I just wanted to spell it out for the benefit of @Pry2).
     
    Last edited: Oct 9, 2015
  11. Tammy

    Tammy Senior Member

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    Your comment in previous post said that I experienced high EBV titers and anxiety.........but that does not mean one caused the other. But yet you mention that the enterovirus that you caught CAUSED anxiety??????????? So why doesn't the same apply to you? Also I don't think it takes rocket science to hypothesize that a virus that can attack the CNS can cause anxiety. My CFS specialist wasn't a rocket scientist but he could put 2 and 2 together.
     
    Last edited: Oct 9, 2015
  12. Hip

    Hip Senior Member

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    Well one can't be certain about these sort of things in my case either; but as mentioned, the virus I caught unfortunately spread to friends and family, and quickly triggered generalized anxiety disorder in two other people. So that is slightly stronger evidence of an anxiogenic effect due to my virus.

    Plus on the Enterovirus Foundation website, it says that chronic enterovirus infections can cause anxiety or depression (although I am not sure where they got their info from on this).

    Interestingly enough, it also says on the Enterovirus Foundation site that:
    So, for someone who gets sudden Epstein-Barr virus reactivation out of the blue, it may be that they unknowingly caught an enterovirus infection, and that enterovirus then caused the EBV reactivation, as well as causing some anxiety symptoms. Then that person may think their anxiety is due to the EBV reactivation, when in fact it may be due to the enterovirus they caught. It's harder to test for chronic enterovirus infections, so people may not be aware they have one.

    I guess it is also possible that enterovirus might reactivate cytomegalovirus, which is a virus that is known to be associated with anxiety.

    I am not saying that this scenario is what happened in your case or in @Pry2's case; but it is a possibility.
     
    Last edited: Oct 11, 2015
  13. Pyr2

    Pyr2

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    Hi everyone, I tried Zantac - big FAIL! I think b/c it has some cholinergic properties - I already have some eye burning and burning feeling all over from autonomic dysfunction. This made it so much worse.

    My primary care dr is of the mind that yes I may have chronic Ebv but this is all a giant autoimmune reaction to the virus (and yes I have high CMV numbers as well and oh yes, Lyme specific bands but at an indeterminate level.). Like I have some autoimmune neuropathy that has impacted my entire body. I have cranial nerve issues, autonomic nerve issues and peripheral. Im a crying jagged mess. Oh, and I don't sleep. This week 2 completely sleepless nights and one with 5 hrs - great! Im scared that something is now wrong with my brain. It feels inflamed and hot. I literally stop breathing as I try to fall asleep. HOT MESS HERE

    I have a rheummy on Tuesday, ID at U Penn next Thurs and then neuro in ten days. THe brain trust HAS to figure this out. Not sure if CFS/ME also do that much or is the actual viruses. Very scared and confused. And oh I am a female!
    L
     
  14. Hip

    Hip Senior Member

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    Sorry to hear it did not work for you. But that unfortunately is often the case in ME/CFS: what works for some ME/CFS patients actually makes others worse. Don't give up of trying other drugs and supplements.



    When my anxiety levels were very high, I also had an inflamed feeling within my head, partly I think from sinus inflammation, but also there was a feeling of inflammation inside the back of my head, in the upper nape of my neck area.

    I used to do yoga-type neck stretches to ease the muscular tension in my neck, and found this was mildly helpful for the head inflammation.

    But by far the best treatment I found for anxiety was the N-acetyl-glucosamine mentioned earlier.
     
  15. Hip

    Hip Senior Member

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    @Pyr2
    I should also mention that I know one person that had a dire case of chronic EBV reactivation, and said she got profound relief from an alkalizing diet.
     
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  16. john66

    john66 Senior Member

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    I think I read in Jay Goldsteins book that the antivirals are gaba antagonists, which might explain anxiety. When I tried acyclovir, Ambien didnt do anything
     
  17. Mackee

    Mackee

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    My specialist wants me to take 300 mg/Zantac Rx before eating then taking dose of Valtrex for CEBV. I am wondering if this is why...? I thought it might be in case of stomach irritation?
     

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