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

el_squared

Senior Member
Messages
127
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
 

Tammy

Senior Member
Messages
2,167
Location
New Mexico
It's disheartening to hear that a lot of people think EBV is not relevant to CFS
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.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
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
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
if you haven't started valtex I suggest you start very slowly. Same thing with LDN.

Read @Mary recent post about her LDN experience.

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.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
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.
 

el_squared

Senior Member
Messages
127
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.
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.
 

SOC

Senior Member
Messages
7,849
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.
 

digital dog

Senior Member
Messages
646
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
 
Messages
39
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.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
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!
 

digital dog

Senior Member
Messages
646
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.
 

digital dog

Senior Member
Messages
646
I might try an even smaller dose than 0.1mg in the future. Seems ridiculous but perhaps I only need a tiny amount.