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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Started Valtrex, then on to Naltrexone -- should I not get my hopes up?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by el_squared, Sep 29, 2015.

  1. el_squared

    el_squared

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    Hi there,
    As I've mentioned before, I'm being treated at the Stanford Chronic Fatigue clinic. Last week, reviewing my blood tests, they said first they want to treat my elevated EBV (ebv ab vca, igg 370.0 0.0-17.9 U/mL). I only tested high for the IgG antibody.

    It's disheartening to hear that a lot of people think EBV is not relevant to CFS.
    Apparently at Stanford they think it's worth trying to address it.

    So I'm taking Valtrex for two weeks and then we'll assess how I feel, and perhaps I will continue. And then at that point, I'm supposed to start taking Naltrexone.

    Anyone have luck on Naltrexone?

    thanks,
    Laura
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    There are many threads on Low Dose Naltrexone. You can find them with a Google Site Search. Good luck with this!
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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    if you haven't started valtex I suggest you start very slowly. Same thing with LDN.

    Read @Mary recent post about her LDN experience.
     
  4. Tammy

    Tammy Senior Member

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    I think EBV is VERY relevant. I am on a different protocol for EBV and am seeing improvement. If for some reason the Valtrex doesn't work for you (I hope that it does) I would be glad to share what I'm taking for this beast.
     
    Last edited: Sep 29, 2015
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  5. *GG*

    *GG* Senior Member

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    I have no idea what my EBV titers are, my illness did start with Mono, I have been on LDN since 2009, so about 6 years now :)

    GG
     
  6. Mary

    Mary Senior Member

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    We are all so different! I reacted very badly to ldn, starting at 1.5 mg. and working my way down over 9 days to 0.125 mg., but it got no better and made me very tired, achey, spacey and depressed such that I had trouble functioning, but my sister who has RA took 4.5 mg. for a month or two and felt no different it all.

    @minkeygirl is right - start very slowly. I just saw my chiropractor tonight because I was wondering if the ldn had done a number on my adrenals - it made me so tired so quickly - and he confirmed it with muscle testing. I'm still recovering from taking ldn for about 9 days (I stopped it last Sunday) and have to increase my adrenal glandular supplement for awhile.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think you may need more than 2 weeks on valtrex to notice a good effect??
     
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  8. el_squared

    el_squared

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    Yes, I think the idea is I would go three months, maybe up to a year.
     
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  9. ukxmrv

    ukxmrv Senior Member

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    I don't discount treating viruses in CFS. My own experience is that Valtrex has been a very useful drug for me so far. I am not able to pay for the dose my private doctor would like me to take however or the other drugs he would like me to try.

    I'd love to be in your position of being seen at Stanford and being able to be tested and treated in the way they are doing.

    I had no bad reaction to Vatrex, found that it did nothing in small doses once a day or spread over a day and only at 1gm a day at once get the good effects.

    Never tried LDN but it is on my list for some day when I can afford it.
     
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  10. el_squared

    el_squared

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    It took years of illness before getting to Stanford. I have an HMO and luckily Stanford is now in my doctor's group. However, I can't use their lab, because my insurance doesn't allow it. Still, I feel lucky. Not holding my breath that it'll work, though.
     
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  11. minkeygirl

    minkeygirl But I Look So Good.

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    that's what I thought, but then I wondered if they were just going to see if she could tolerate it. I know people are on AV's for years.

    @el_squared I think you should look at everything as a tool to help you feel better.
     
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  12. el_squared

    el_squared

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    Yes, at two weeks we were going to see how I'm tolerating it. Then if I'm doing okay we're supposed to add LDN.
     
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  13. SOC

    SOC

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    I would say that the simple fact that you are now under the care of some excellent ME/CFS specialists is reason to have hope. :) I would also say that expectation of very rapid large improvement (on the scale of weeks) or expectation of a complete cure or remission might be overly optimistic.

    My daughter and I both take Valtrex and LDN, among a number of other things, and have had a great deal of improvement. It did not happen overnight and we are not cured, although my daughter appears to be in remission. I am pretty far from remission so far, but am very glad for the improvement I got as a result of good treatment from ME/CFS specialists.
     
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  14. digital dog

    digital dog Senior Member

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    Mary, do you feel perhaps that you took too much LDN initially? Also tiredness and spacey is common at the beginning. Im not sure about depression.
    You know your body but I wonder if you tried again (when you are strong enough) with a tiny amount and stuck with that tiny amount for a month it might get better.
    Im sure you've thought all this.
    I wouldn't endure depression under any circumstances so completely understand your stance.
    What a shame.
    x
     
  15. Carola

    Carola

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    Piping in about LDN - I've been taking it since 2012 and consider it extremely helpful in improving sleep, mood, and energy. Heeding advice on this site, I started low, at 0.2 mg (even at that dose I had unpleasant side effects of insomnia and headache for 2 weeks) and worked my way up to 1.5 mg by increasing a couple of mg each week. Over the next 2 years I worked up to 4.5 mg in a divided dose (3 mg at bedtime, 1.5 mg in the morning). I'm grateful that I can tolerate it and hope never to be without it.
     
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  16. el_squared

    el_squared

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    Since I had an adverse reaction to valtrex, the doc now wants to give me famciclovir. Have you tried that?
     
  17. panckage

    panckage Senior Member

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    Yep so far naltrexone works wonders for me. I have hobbies again, I'm exercising more. My brain fog is mostly gone. Now when I crash I can usually still play video games or enjoy TV rather than just lieing on the couch doing nothing. I feel like I'm euphoric most days now :D

    It helps energy, but only so much. My other medications work better now with LDN (kratom, Marijuana, ritalin) .

    It helps libido immensely. When I first noticed the effect I pretty much just masterbate on the couch a few days straight (i know TMI! But it just feels good to actually be able to do stuff again!!) . Since I have returned to romancing the ladies and have had a couple dates so far :D

    It's really nice, mostly I feel like a normal person who fatigues easily now. Fatigue and crashing are about the only 2 things I have to worry about now. Hell even when I crash I am still able to exercise most of the time now!
     
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  18. digital dog

    digital dog Senior Member

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    Oh Lord what Id give for some euphoria.
    I HATE that I couldnt tolerate LDN. It was my biggest hope.
    Glad others are feeling better though.
     
  19. digital dog

    digital dog Senior Member

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    I might try an even smaller dose than 0.1mg in the future. Seems ridiculous but perhaps I only need a tiny amount.
     
  20. Mackee

    Mackee

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    My specialist told me at least 6 months taking 1g. @ 3x/ day, up to 1 year.
     

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