No PEM after weeks on Valacyclovir

[hmnr asg]

Dr. Chheda restarted me on valacyclovir (1g three times per day). It did not take long before I started to feel the benefits. I have been on it for just over a month now and I am improving daily.

I also asked my doctor to give me a script for valtrex 3g per day and surprisingly he agreed. I had good benefits from famvir initially which wore off. (I have run out of things to try, so why not give this a try).

My only concern is that this is a very high dose. Are you concerned about the long term side effects? do you have any idea if the benefits would persist if you stopped taking this med? Also, will you be monitoring your renal function to make sure this is not affecting you adversely?

Thank you and congratulations on your improvements!

My test results:
VZV IgG Result (Positive)
M pneumoniae IgG 1.47 (positive)
Herpesvirus 6 IgG 1:20 (positive)
EBNA IgG Result (Positive)
VCA IgG Result (Positive)
CMV IgG Result (Positive)

 

[Diwi9]

@hmnr asg - Dr. Chheda requires regular blood draws while on antivirals to check kidney and liver function. I'm not worried about being on a high dose for a long time. People with HIV live for decades taking antivirals. If a problem comes up on my labs, I will discontinue and see if it corrects. Congratulations on obtaining a prescription. I hope you are a responder!

 

[hmnr asg]

@hmnr asg - Dr. Chheda requires regular blood draws while on antivirals to check kidney and liver function. I'm not worried about being on a high dose for a long time. People with HIV live for decades taking antivirals. If a problem comes up on my labs, I will discontinue and see if it corrects. Congratulations on obtaining a prescription. I hope you are a responder!

One last question, how regularly do you have to have your blood checked ? I want to make sure I follow a similar regiment.

 

[Diwi9]

One last question, how regularly do you have to have your blood checked ? I want to make sure I follow a similar regiment.

I used to be on once per month, but my labs were stable so after a number of years we've moved to every other month.

 

[Marylib]

Congratulations! I know several people who do really well on this med. One goes off it now and then to give her organs a rest - at which time she's bedbound again, like many of us here - but then she hops back on it and off she goes. Quality of life is so important.

 

[GlassCannonLife]

Sad to report that I have had two days of PEM. It's not as severe as in the past, but PEM is PEM. The trigger was not over-exertion. It was an extremely stressful decision about a home purchase and placing a bid while my husband was out of town. I could actually feel the switch in my nervous system when the anxiety set in and I knew there would be consequences. I wish we had medical terms to describe some of the physical symptoms we experience. Anyway, it's been two rough days with sore throats, no energy, muscle weakness, and sensory issues. Yesterday and today, I have at least felt better in the evenings.

It's discouraging to have firm confirmation that the ME/CFS is still there, but anyone living with this knows how important any level of improvement is and I am not going to complain.

Very interesting, congratulations on your progress and I'm sorry to hear that you still have some PEM.

I really want to try some valtrex but it's hard to get a doctor to agree to script it (in Australia), particularly at those dosages..!

I was wondering - do you think it might be wiser to take it easy for a few more months and not jump straight into such large amounts of exertion? I can definitely relate to wanting to do more, as I often overdo it and crash myself while staying the same.. It must be very tempting when you have improved dramatically.

That being said, it seems like many people who have a positive response to some treatment end up immediately diving into as much activity as they can handle, even if it's only weeks after they were significantly ill. This seems to backfire in some cases, and they end up getting a little worse or having some type of issue.

I feel like it might be safer to increase activity more gradually and give the immune system, nervous system, HP axes, etc more time within a healthy, non ME/CFS environment to stabilise and equilibrate before pushing the boundaries of what you can do with your new level of health.

 

[Diwi9]

Very interesting, congratulations on your progress and I'm sorry to hear that you still have some PEM.

I really want to try some valtrex but it's hard to get a doctor to agree to script it (in Australia), particularly at those dosages..!

I was wondering - do you think it might be wiser to take it easy for a few more months and not jump straight into such large amounts of exertion? I can definitely relate to wanting to do more, as I often overdo it and crash myself while staying the same.. It must be very tempting when you have improved dramatically.

That being said, it seems like many people who have a positive response to some treatment end up immediately diving into as much activity as they can handle, even if it's only weeks after they were significantly ill. This seems to backfire in some cases, and they end up getting a little worse or having some type of issue.

I feel like it might be safer to increase activity more gradually and give the immune system, nervous system, HP axes, etc more time within a healthy, non ME/CFS environment to stabilise and equilibrate before pushing the boundaries of what you can do with your new level of health.

Yes, I understand what you are saying and I didn't just attempt to blow myself up. Anyone with ME/CFS naturally paces, even when they are attempting exercise. I still pace to some degree because I need to rest at times, but when I feel good and have energy, I can exercise. One naturally tests the waters and proceeds as able. The only problem I have found is trying to exert when I need to rest, I don't push through then, I rest. POTS remains a limiter.

 

[Haley]

I really want to try some valtrex but it's hard to get a doctor to agree to script it (in Australia), particularly at those dosages..!

I did a combo of local script plus ordered the rest from an online pharmacy. I had no issues with delivery or quality, but it's still pretty expensive.

 

[GlassCannonLife]

Yes, I understand what you are saying and I didn't just attempt to blow myself up. Anyone with ME/CFS naturally paces, even when they are attempting exercise. I still pace to some degree because I need to rest at times, but when I feel good and have energy, I can exercise. One naturally tests the waters and proceeds as able. The only problem I have found is trying to exert when I need to rest, I don't push through then, I rest. POTS remains a limiter.

Sure, I didn't mean to imply that you're attempting to blow yourself up.

You had just said that you had started it around a month prior to starting this thread, and had already started doing exercise etc after a few weeks of progress..

Each to their own of course but it just seemed like stepping up activity more gradually could be helpful - ie even if testing the waters "seems" fine, to just essentially write up a progression that would be measured and careful and then force oneself to stick to it despite feeling like you can do more.

Anyway I didn't mean to be critical, just trying to help. Hopefully you continue to improve and won't need to worry about pacing at all!

 

[GlassCannonLife]

I did a combo of local script plus ordered the rest from an online pharmacy. I had no issues with delivery or quality, but it's still pretty expensive.

Cool, good to know. I was looking at ADC and they currently limit supply such that I could get 2 months at a time, but for around $500 aud. Might revisit it with my doctors as well.

 

[Haley]

Cool, good to know. I was looking at ADC and they currently limit supply such that I could get 2 months at a time, but for around $500 aud. Might revisit it with my doctors as well.

That's where I got mine from. I can't remember what I paid at the time, it was a few years ago now

 

[godlovesatrier]

I've had PEM blocked now for several weeks on Josh's protocol. I haven't crashed once that I can remember. But I've had pretty bad body aches with some occasional pains and loads of other side effects pop up. Plus currently tired throughout most of the day, but still have energy, it's a very odd feeling, especially without PEM. I think this may be b complex related tho.

Just wanted to ask even though your PEM's blocked, do you feel you have any side effects now like insomnia or anything else? If not that's great, I just find it intriguing that a lot of the anti viral treatments seem to have a similar time to effect, usually 3 months. Glad you're getting some of your life back at least.

 

[Diwi9]

Anyway I didn't mean to be critical, just trying to help. Hopefully you continue to improve and won't need to worry about pacing at all!

No worries. This is my second quasi-remission in 12 years.

 

[Diwi9]

@godlovesatrier - Yes, I still get side effects. It's weird that I can aerobically push myself on my stationary bike, but sometimes just sitting up for too long causes extreme muscle fatigue (especially the dreaded coathanger pain). I know being upright is a complication of POTS. I was active yesterday cooking in the kitchen. My Mom was visiting and I had to have a rest after two hours standing. After about 30 minutes, I was energetic again. Today I am tired and all of my joints are sore (stiff and burning), I am resting now but will be having a guest over for dinner and feel like I will be fine hosting, so long as I can spend most of the time sitting.

I had severe problems with insomnia prior to this improvement. Since the improvement, I've only had a few days with insomnia and that was while my husband was out of town.

 

[godlovesatrier]

That's an amazing result! Hope it continues. I guess based on Dr learners case studies there's no real reason why it shouldn't.

Pots is something I've probably never had to my knowledge. Saying that any feeling of pooling blood in my legs and such us much reduced now. Maybe that's the b vitamin's.

Like you I can keep going after a rest but in my case usually a longer rest of an hour or so.

Hopefully we both continue to improve in this remission I guess I almost feel like it's remission. I just need to loose this awful dizziness. Good luck!

 

[andyman123]

Congratulations on the progress @Diwi9

 

[Diwi9]

Well y'all, that beautiful quasi remission is over! I have heard from others that some have experienced a brief intermission of symptoms with antiviral treatment. I'm still better off than I was last year, but I'm experiencing disrupted sleep patterns again and very difficult wake ups with muscle weakness and the whole gamut of crap. After a few hours I start to improve and can start my day...but that can be at 4:00 pm or 8:00 pm. And while I know people will call me stupid, I am still exercising when I can. I can't do much, but moving is part of what makes me feel alive. So to wrap this up, it would be really nice if a researcher out there could get funded to explain WHY antivirals can do this. Also, does anyone have a clue if pulsing antivirals would be beneficial? Obviously it's not a cure for me, but antivirals have a major impact.

Last thing I remember I was running for the door
I had to find the passage back to the place I was before
"Relax," said the night man, "We are programmed to receive
You can check out any time you like but you can never leave"

 

[Martin aka paused||M.E.]

So to wrap this up, it would be really nice if a researcher out there could get funded to explain WHY antivirals can do this.

I think if you look at Prusty's work, you get a good explanation for your subgroup.

Well y'all, that beautiful quasi remission is over!

I'm very sorry to hear that. It's a nightmare when sth works and then stops. That is one of the biggest mysteries of this illness I think. I hope you won't crash heavily. That's the mistake I made after Abilify and I won't be able to forgive myself anymore.

 

[Diwi9]

@Martin aka paused||M.E. - Everything I experience with this illness is weird. When I hear other peoples' experiences, sometimes it's hard to relate. I have had periods where PEM is so brutal and lasts a long time, but my situation right now is that I wake up feeling hungover and like I was in a car wreck the prior day and my POTS is raging. After an hour or so, I begins to dissipate. I seem to have some undiagnosed neurological issue in my arms and upper spine which bear the brunt of my weakness and pain on a regular basis. After a few hours, I start to feel almost normal. My sleep is irregular and I cannot control it even with meds, but it dictates the course of my illness. Before and since relapse, I wake up always feeling inflammed...my brain and connective tissue...my speech is slurred and I have difficulty moving until about an hour. After so many years, I have become accustomed to certain rhythms in my symptoms and what that pattern means.

Also @Martin aka paused||M.E., since you are German...I spent much of my good time cooking Oma's recipes for my parents that live 10 minutes from me: Rouladen, Spätzle, Klöße, Rotkohl, Mohnkuchen mit Birnen, und Obstkuchen. These small things make me feel good about my life, a way I can contribute. I normally cook late at night when I feel best.

 

[Martin aka paused||M.E.]

Rouladen, Spätzle, Klöße, Rotkohl, Mohnkuchen mit Birnen, und Obstkuchen.

Oh yeah, haven't had them for years... I miss my grandparents a lot.

Everything I experience with this illness is weird. When I hear other peoples' experiences, sometimes it's hard to relate.

I want to add a +1.

So many here are not of my opinion but I think of ME/CFS as two things:

1. An umbrella term for more than one pathology with very similar symptoms

2. That if we think of it as one disease with many subgroups than at least it gets a new and terrible face when getting severe.