Valtrex die off-possibly???

[Misfit Toy]

Started Valtrex last Thurs and all of a sudden today, I am having similar symptoms as on acyclovir. It's crazy. My EBV is very high and HHV6 is also.

Tonight, I feel like I have stabbing pains in my feet. Everything hurts. Muscles are twitching like crazy. Is this common with antivirals?

I am determined to stick it out because my doctor said that it helped another patient with her intercostal neuralgia which has been out of control for me. I've been sick for 25 years and I'm pretty sure that my Epstein-Barr virus is still the biggest culprit. That's what started this whole thing-the Epstein-Barr virus.

I am only taking 500 mg once a day. That's not a lot! Could someone give me some tips or help me out with if this is a common side effect, or symptom, or die off? My main side effect is pain.

This is definitely not for a sissy!

 

[SOC]

Started Valtrex last Thurs and all of a sudden today, I am having similar symptoms as on acyclovir. It's crazy. My EBV is very high and HHV6 is also.

Tonight, I feel like I have stabbing pains in my feet. Is this common with antivirals?

Neither my daughter nor I had that response to antivirals. That doesn't mean that it couldn't be a common response.

There should not be "die-off" from antivirals. First, that kind of rxn only happens with certain pathogens, not viruses. Second antivirals don't kill the virus, they just stop it replicating. Your body still needs to kill of the infected cells by normal processes which is not rapid, so you don't have the sudden die-off of pathogens that you see with abx (under some circumstances).

You best path is to ask your doctor if s/he thinks this is a normal, acceptable rxn to treatment, or a bad rxn.

 

[Misfit Toy]

I thought some people do get sick when taking anti virals? I remember you talking about it and how some go through a little bit of hell on anti virals? I recall that.

Unfortunately, I am going to have to fly blindly here because my doc is an hour away and does not call anyone anymore. I would have to go and see him and I just saw him last week.

He's so busy and a CFS doc. Not like Lerner, Klimas, etc. He just doesn't get back to you anymore. You have to take the 2 hour trip in a day to get answers.

I'm feeling like a firework right now. My muscles are twitching like crazy. I'm going to take heed and keep my head on this...write about it. It could just be my pain flaring but this pain, the muscle twitching etc. got worse after taking the Valtrex this afternoon.

I know Valtrex works because it rids me of fever blisters in 2 days. That's pretty fast. So...maybe it's doing something like "ridding" me of something right now.

On to drink some Natural Calm.

 

[SOC]

I thought some people do get sick when taking anti virals? I remember you talking about it and how some go through a little bit of hell on anti virals? I recall that.

Yes, some people do, although more commonly on Valcyte. I haven't yet heard of a good reason for a really bad response to Valtrex, but there might be one.

Unfortunately, I am going to have to fly blindly here because my doc is an hour away and does not call anyone anymore. I would have to go and see him and I just saw him last week.

Any doctor should accept a call about a medication reaction as bad as the one you are describing. It would be unprofessional not to because patients can be endangered by bad rxns to medications. You might not be able to talk to the doctor himself, but you should be able to leave a message and get a return call from a nurse. If you can't get even that, you need to find another doctor because this one could be endangering your health.

He's so busy and a CFS doc. Not like Lerner, Klimas, etc.

Lerner and Klimas are not busy CFS doctors?

 

[Misfit Toy]

Soc, that's of course not what I meant.....I meant that he is not as well known, or as up there as they are. He is in a small town, but is known for thinking outside the box, like them. He worked with Poesnecker (adrenal fatigue).

Honestly, there is no better doctor around here for CFS. He's it. A nurse would get back to me. But, knowing him...he would tell me to stop it. I would like to hear how others here fair with it.

I get such great advice from folks here....even better at times than from my doc.

 

[Misfit Toy]

http://forums.prohealth.com/forums/index.php?threads/valtrex-and-heel-pain.200196/

I found this on pro health. A woman describing my foot pain on Valtrex. Dr. Lerner told the one patient that 2 to 6 weeks on Valtrex could be a hard road, but that it would ease up.

I've found on this link I posted, that several people became quite ill on Valtrex due to die off of the virus. Also, yeast kicks up. Interesting.

 

[heapsreal]

Its not suprising to have some type of issues or negative reactions when we think that herpes viruses like to hide out in the nerves and nervous system. ALthough antivirals dont kill the viruses directly they do act on the viruses themselves. Although not scientific, the avs are probably not making the viruses very happy and stirring them up, just something that isnt explained by medicine but seems to be a common reaction in cfs/me people.

My advice would be try to continue unless side effects become unbearable or u have severe side effects which affect breathing or your heart rate etc. It seem that for most people these reactions do tend to fade away. Can always consider lowering the doses as well.

good luck,
take care.

 

[Misfit Toy]

Thanks @heapsreal . I saw your posts on that site as well. I wish I could afford Famvir. For now, it's Valtrex. TY!

 

[Gingergrrl]

@Misfit Toy I am sorry to hear you are going through this and I am having a sort of similar experience with Famvir (mainly for EBV but was also positive for HSV1 and VZV.) In general, pain and headaches are not an issue for me and my CFS has centered around fatigue, PEM, and a host of cardiac/ dysautonomic stuff (plus other assorted dysfunctions LOL.)

Anyway... today was my 6th day on Famvir and since starting it I have had almost a non-stop headache. The last two days I had severe pain in my face, jaw, ears, neck, etc, and a few days ago in my ribs. I've been blessed to have on-going e-mail contact with my new CFS doctor as he wanted to know how I am doing on Famvir with the hopes of increasing the dosage. At present I am taking 500 mg 2x/day (12 hours apart.) This is the first anti-viral I have ever taken (aside from natural ones from my ND.)

I asked him by e-mail if my reactions are like a "viral die-off" versus bad side effects and if they are temporary and my body will adapt to them. I told him I am dedicated to the Famvir trial and have no intention of stopping but the pain is really making me feel ill. The last two days I have had a sickly type of fatigue equal to when I had mono (but minus the fever, sore throat/tonsils, etc.)

At my appt, he told me that I might feel worse/sicker for the first month and then start to feel improvement (if I am in the group of people that this works for- which there is no guarantee.) So, I asked him if the symptoms I am experiencing are what he meant by feeling worse.

I will let you know what I find out but want to stress please not to take it as medical advice and to please check with your own doctor as we are two different people and on two different medications. Hope this helps!

 

[Misfit Toy]

@Gingergrrl -do you see one of the major CFS docs? I was reading through your thread and saw you had more energy...I'm sorry you are having this pain. Yes, it's so hard to discern if it's side effects or a possible viral load situation.

My doc has me on such a low dose, but I feel I am bombarded with EBV, plus I have the whole low igg deal with CVID. So, with low igg and idiopathic lymphopenia which means low WBC...I have not been able to fight EBV at all. My lymphocytes are that of an AIDS patient.

I am going to follow your progress and we can keep each other company! : )

 

[*GG*]

Hang in there Misfit, unless of course it is not possible to take it anymore, for various reasons!

GG

 

[Misfit Toy]

Thanks, @ggingues !

 

[Gingergrrl]

@Misfit Toy

-do you see one of the major CFS docs? I was reading through your thread and saw you had more energy...I'm sorry you are having this pain. Yes, it's so hard to discern if it's side effects or a possible viral load situation.

I do and just started with him last month and wrote all about it in my thread about OMI (but don't want to get off-track in this thread.) You can send me a PM if you can't find that thread. It was weird b/c the first two days on Famvir I had more energy and felt really good but it did not last. So it was either some kind of placebo affect or the side effects/die off or whatever we want to call them just hadn't started yet.

My doc has me on such a low dose, but I feel I am bombarded with EBV, plus I have the whole low igg deal with CVID. So, with low igg and idiopathic lymphopenia which means low WBC...I have not been able to fight EBV at all. My lymphocytes are that of an AIDS patient.

I am actually on a much lower dose than he wanted to start me on but we decided to start with it for a number of reasons with the plan to increase it in 2-3 wks (depending how I tolerate this dose.) He gave me a diagnosis of CVID, too, if we are talking about the same thing (but I may be confused!) I have not been able to fight the EBV either but still hopeful that the Famvir will stop it from replicating.

I am going to follow your progress and we can keep each other company! : )

Sounds good and let me know if I can help!

 

[Misfit Toy]

http://www.livestrong.com/article/113847-epsteinbarr-neurological-symptoms/

Above is a link on how Epstein Barr can effect a single nerve or cause a neuropathy. This is of specific interest to me due to having the nerve wrapping around my ribs inflamed for NO reason found. I believe it's because of a virus and shingles and viruses cause this nerve to become inflamed.

 

[Gingergrrl]

@Misfit Toy I just read the link and it makes sense, the only weird thing for me is that I did not have any of this nerve pain (I am calling it that b/c I don't know what else to call it) prior to taking Famvir. That is why I am wondering if it is something like what @heapsreal said that these viruses (EBV, VZV, etc) hide out in the nerves and the anti-virals some how stir them up?

 

[Misfit Toy]

@Gingergrrl -I just think there is no idea how to know what or why, but if you've never had this pain, it makes sense that the virus is hiding out there and now you are feeling the affects due to whatever reason. These AV's are doing something.

I just read a whole article on how EBV can affect the jaw...so why couldn't that be your side effect? Or, it's just a sort of die off, which I still believe that is the case. It suppresses viral reproduction, but I'm sure it kills the virus to some extent.

Why do my fever blisters go away on Valtrex? Because Valtrex is KILLING off the virus. At least that's my take....it makes sense.

 

[Gingergrrl]

@Misfit Toy It makes sense to me, too! I know that "die-off" may not be the correct terminology (in the sense that there is not a herx reaction like with bacteria) but I know that the anti-viral is definitely doing something that is stirring up the virus and making it mad !!!

 

[Misfit Toy]

Agreed. Years ago I was on Valtrex and my doc said I could have a herx like reaction...I still believe that to be true!

 

[Misfit Toy]

@Gingergrrl and @heapsreal -my doctor did get back to me, he said that my pain is a side effect of Valtrex. What am I supposed to do about that? I don't get it.

 

[Gingergrrl]

@Misfit Toy My Dr got back to me, too, and said that he thinks my headaches and facial pain are from the Famvir and he's seen it before. He told me we could lower the dose but to wait until Fri and we will re-evaluate. I have no intention of lowering the dose and feel re-assured that he thinks it is from Famvir (vs. some new weird thing going on!) I still want to raise the dose but now suspect it will be at a slower pace than originally planned which is okay with me.