Valtrex: what should I expect?

[Thinktank]

@alice111, nice to hear you are still having improvements.

My doc has put me on acyclovir. I took the first 200mg dose a few hours ago and so far so good.
The downside is i have to take it five times a day! I will start with once a day ofcourse and build up the dose every other day.

From what i've read acyclovir is tolerated better than valacyclovir by many. Maybe because valacyclovir is a prodrug and needs conversion by the liver?

I did try 0.5mg LDN last week but it gave me insomina and it increased my allergies. WIll try again at a lower dose soon.

 

[drob31]

Valtrex supposedly modulates adenosine levels. Adenosine makes you feel sleepy. Caffeine works by mimicking and blocking adenosine receptors, which is what promotes wakefulness. Adenosine is important for deep sleep, and raising it can help, as well as lowering if too high.

http://www.remedyspot.com/content/topic/2233437-re-stan-valtrex-and-adenosine/

 

[alice111]

@Thinktank hows it going on the acyclovir??

 

[Thinktank]

@alice111, i'm now on 400mg, no side effects but also no improvement yet.

I'm going to increase my dose today and switch to a "swish and spit" method.

How about you? Have you been able to increase your dose?

 

[alice111]

@alice111, i'm now on 400mg, no side effects but also no improvement yet.

I'm going to increase my dose today and switch to a "swish and spit" method.

How about you? Have you been able to increase your dose?

Hey! So everything was going really really well. Just did my lastest increase kind threw caution to the wind, and jumped up by a whole tab.. did NOT go well, omg such wired adrenaline anxiety I had to downa fistful of benzodiazepines it was awful... but hopefull it passes!!! I still don't understand why it does this.. but if it's the way out then I guess it's worth it!

 

[alice111]

Just wanted to update in case anyone is looking for info about starting on valtrex.

Definitely starting at a minuscule dose makes a difference. I had pretty much no reaction when doing this.

I recently got a little overconfident and increased by a whole pill, wow. Really bad and weird reaction, I have had to back down. I will try again slower. So in case you are starting here are some symptoms I experienced that may be a sign you need to go slower:

-Feeling stoned/out of it/ SEVERE brain fog
-increased fatigue and dizziness
-inflammation
-decreased appetite

I did not get any of these symptoms when going really really slow. So moral of the story is start low go slow

 

[fireflymd]

I've just started taking Valtrex 500 mg 2x a day again maybe for two weeks or so now, and I FEEL SO MUCH WORSE. I can't really explain the side effects, but fever-ish, even more dizzy and brain fog. Sometimes I'll skip a day or two because I really can't stand to feel this way while at work. Or take just 500 mg/1 a day. Should I be starting even lower?

I had tried this same regimen last year as prescribed by a NYC CFS specialist but felt the same gross symptoms so I stopped it. Even at lower dosage.
Now, I'm seeing a different LI-based CFS specialist (insurance reasons, will probably go back to the first when my new plan kicks in) and he's prescribed the same thing. I warned him about how awful I felt the first round, but he couldn't offer me any suggestions except that maybe it's "dying off." He's also put me on probiotics and whatnot, but they seem to be messing with me gastrointestinal-wise. I'm not too happy with him for several reasons.

I still have high old EBV titers and HHV-6 (from toddler age), probably the same levels as previous year, but nothing that suggests a current infection although I've been feeling at my worst again for the past few months. Also have tested for levels of parvovirus.

Which LI based doctor are you seeing?

 

[cornwellsb]

Which LI based doctor are you seeing?

If your doctor is talking about dieoff he is not a good doctor as valtrex does not cause dieoff. It stops replication which is why it takes so long to treat.

Stick with the probiotics. After researching I bought 5 or 6 different brands with many strains (over 15 with over 20 billion) and took more than on the directions. I took more than the directions specify for a week and then moved to the directed dose each day after tat week. Then I would switch between probiotic brands each week. The gastro side effects are a good sign and this is dieoff. Eventually your body will regulate but it can take a few weeks. I had amazing results with probiotics and started this after googling how I cured CFS. There are multiple people who have reported probiotics as curing them. They took a week at the trillion level ... I never got fully cured but I'm at about 90% and life is good. I also took valtrex and valcyte. Valtrex 500mg once a day and valcyte 2x which I staggered every 4 or 5 hours. All these together are not good on the kidneys. Valtrex makes many moody ... I couldn't stand valcyte and only did it 3 months and finally threw in the towel but I am functional.

I would definitely stick with the valtrex for at least a month ... have your doctor prescribe vyvanse low dose. (15 or 20mg) It's basically ADD medication but will allow you to get through a full day. St. John's wort helps with the moodiness.

 

[GreenLiz]

I started 1.5 months on Valtrex (l gram x 3 day) and L-Lysine (same). In addition Vit B complex, AHCC, Alpha CRS, Maitak DMG, Baicalin, tumeric, cats claw, licorice root, immuno DMG (Beta Glucan), CBD. I eat clean, non-gmo mostly fruit smoothies laced with tumeric, ginger, thyme and cilantro.

I'm having good days and bad. Still more bad than good though. I can now feel this "thing" cycle daily as well as every 3-4 days I'll get slammed.

I was originally diagnosed with Parkinson's. I am now having almost no tremor (Off all PD meds, yay!) Anti-inflammatories really help too, especially for the neurological aspect.

So, I can say that I have improvement but a long ways to go. My Doc says somewhere close to a year for his patients. He's treated over 2000 with a 70% success rate.

Hi stiffler -- I've had CFS (post-viral syndrome) and my doctor offered this for a mono reactivation I experienced 10 months ago when traveling, and still haven't recovered from. Thanks for sharing your diet (I'm having lots of turmeric and ginger, and mushrooms myself.) My status: The best I have ever felt was 70% better. I have relapsed 9 times to about 20-30% functionality, all from physical exertion (cold weather, travel, high-arginine foods are also triggers) each time taking 1-4 weeks to get back to 60-70%. I am currently recovering from my latest relapse, a tough one (about 40% functionality after 2 weeks). Two questions:

1) How are you doing today? (Writing this March 26, 2017)
2) How long did you have CFS before you started taking this drug?

I'd love to learn what worked for you, or didn't. Glad there is a community for this.

 

[Rowena Ilagan]

Hi there, I was prescribed acyclovir and took it for 4 months but did not improve on it. I ended up using antivirals from Eastern medicine and I responded better to those than I did acyclovir.

 

[GreenLiz]

Hi there, I was prescribed acyclovir and took it for 4 months but did not improve on it. I ended up using antivirals from Eastern medicine and I responded better to those than I did acyclovir.

Thanks Rowena! I'm going to give Valacyclovir (Valtrex) a try for 6 months, since it seemingly works for some people with reactivated EBV, and my EA-D is positive.

I originally got better with a ton of Olive Leaf extract pills from Seagate's but I reordered it and the next time it was brown / less potent instead of vibrant and greenish and seemed to have less effect. I then relapsed when I pushed myself too hard on a cold day. At some point, I stopped with the supplements for a while because my doctor poo-poo'd them. The right ones do help though, when they are potent. Frustrating though that there is no agency to test the quality of ingredients in supplements.

Currently I'm taking Astralagus, eating ginger and turmeric, having high lysine foods, olive leaf extract (even though less potent). I recently started Magnesium, Vitamin K2, and Cod Liver Oil for my Vitamin D deficiency which I said in the other thread helped me sleep through the night for the first time in months. Also take CoQ10 with coconut oil, b vitamins here and there, and have started to have a tsp of ghee in the morning recommended by my yoga lady. I've also recently ordered a bunch of teas.

Anything in particular you take? Teas? Herbs? Foods? Would love to know what's helped.

BTW, I'm now seeing this nice yoga lady who is helping me do breathing and light stretches. Very light. Makes old people exercise videos seem like Crossfit. But it's definitely helping me where I'm at.

 

[Rowena Ilagan]

Hi Liz, glad to hear the olive leaf extract helped you. I recall trying that also (originally from a naturapath) but did not notice a significant difference. I think supplementation and diet does help. Astralagus helped me if I remember correctly...it was one of the first herbs I was given. Magnesium also helped me a lot when I was in a lot of fibro pain; I even got Mg IVs to help with the migraines which I was getting constantly for months. I was taking vitamin D and K which I think helped in hindsight, as my vitamin D levels were on the low side. I also made sure that I got some sunlight daily.
Do you find the B vitamins helping you? Did you take injections? I tried but again not much difference.
As far as foods, I got a food allergy test done and found that I'm allergic to dairy, some sea foods, beans, and beef so I've been staying away from those. I do have some sensitivity to oats (gluten grain) so I'm doing my best to avoid them. Probiotics help (both capsule and from food-I'm not doing this religiously now but I do eat some fermented cabbage occasionally) and also bone broth for gut healing. I was also told to stay away from sugar-this is perhaps the hardest thing for me to do consistently. Sugar feeds Candida and that was a struggle for me too.
Yoga is great! I'm glad you found a teacher who is helping on that end. I could only do certain poses (no bending down) because I have positional vertigo (and vertigo resulting from inner ear damage, probably from one of the viral infections I got with ME). How do you rate your activity level now? Can you get out of the house several times a week? I think when I first started out with ME I could only manage one day a week to see doctors. When I got a bit stronger I would see a physical therapist and she helped increase my energy envelope. We started light with 5 minutes on a stationary bike and 5 on an arm bike, and I would take short walks on days I couldn't see her.

 

[shannah]

I haven't been ordering drugs online for a while, am a bit out of the loop and looking for help.
I just checked All Day Chemist and they say they require a prescription.

Does anyone have a source for Valtrex that:

1. doesn't require a prescription
2. reasonably priced
3. will ship to Canada?

I know some generics aren't as effective as the brand name medications. Is the generic Valtrex as effective or does it depend on where you order from.

Thanks so much.

 

[andrew p]

I haven't been ordering drugs online for a while, am a bit out of the loop and looking for help.
I just checked All Day Chemist and they say they require a prescription.

Does anyone have a source for Valtrex that:

1. doesn't require a prescription
2. reasonably priced
3. will ship to Canada?

I know some generics aren't as effective as the brand name medications. Is the generic Valtrex as effective or does it depend on where you order from.

Thanks so much.

hi there

forget the part of the order process that states it wants you to upload the prescription. you don't need one.

i get my valacyclovir from alldaychemist. without having been on valtrex itself i can't tell if there is a difference between the branded and generic forms. the manufacturer is a respected company that produces a lot of generic medicine.

that me been on it for 7 months. i do think it's made a difference. i am doing more, but probably not feeling much better as i'm doing too much!!!! aarrrggggghhh

i felt dreadful for the first month - herx type reaction - and then overnight felt a lot better and thought my brain fog cleared a bit. not gone, but better than it had been.

good luck!

 

[shannah]

hi there

forget the part of the order process that states it wants you to upload the prescription. you don't need one.

i get my valacyclovir from alldaychemist. without having been on valtrex itself i can't tell if there is a difference between the branded and generic forms. the manufacturer is a respected company that produces a lot of generic medicine.

that me been on it for 7 months. i do think it's made a difference. i am doing more, but probably not feeling much better as i'm doing too much!!!! aarrrggggghhh

i felt dreadful for the first month - herx type reaction - and then overnight felt a lot better and thought my brain fog cleared a bit. not gone, but better than it had been.

good luck!

I so appreciate you posting with your information.

As you've probably experienced yourself, you can spend hours and hours sourcing out these things with one failure after another for a variety of reasons. When someone is kind enough to share their experience which amounts to a major short cut, I so-o-o-o-o appreciate it.

Thank you so much @andrew p

 

[andrew p]

I so appreciate you posting with your information.

As you've probably experienced yourself, you can spend hours and hours sourcing out these things with one failure after another for a variety of reasons. When someone is kind enough to share their experience which amounts to a major short cut, I so-o-o-o-o appreciate it.

Thank you so much @andrew p

not a problem. happy to help. someone else in the past gave me the same information. it a terrible condition to have with pretty much no help given by the nhs in the uk, so having a community that help each other is key

just ensure that you have blood tests taken after you start taking it. i think i waited for 6 weeks, and then at 3 month intervals to check kidney and liver function. make sure you drink plenty of water, that's important

 

[Rowena Ilagan]

I can only comment on my experience with valcyclovir and Valtrex here. I had a some die off reaction according to the N.D. I was consulting with at the time but overall it did not lift the fatigue or "poisoned" feeling I had after 4 months on the drug.

 

[xebex]

You shouldn't be breaking these in half ... I forgot why but I remember reading it is not good. I think it is also dangerous if you get any powder or residue in your eyes. (Which makes me wonder what this is doing internally). My script also has a big warning on the side about breaking in half.

the blue coating on the pill protects the stomach lining from the ingredients inside, it can create stomach upset and nausea, my pharmacist says you can cut in half if you want but it will probably be uncomfortable and god knows what it's doing to you to make you that uncomfortable.

 

[shannah]

All Day Chemist doesn't ship to Canada.

Anyone have an alternate online source that will - without a prescription?

@andrew p