I've been in treatment for lyme going on three years and am starting to get more fatigue and viral symptoms returning. These are symptoms I had with CFS years ago. I'm much improved and most of my protozoa/bacteria is under control, which is probably why the viral is emerging. I've always had high CMV, EBV, HHV-6 and Coxsackie, but did not feel unwell or fatigued.
I have an upcoming doctors appointment and wanted to try an anitviral like Valtrex or Valcyte. Years ago I tried Valtrex with no benefit, but I wasn't on it long. I was prescribed Valcyte, but was too afraid to take it at the time. Now I'm thinking which one is best to try?
Do any of you have experience with these two drugs and have you had success? Did you have any side effects with the Valcyte or reasons for not trying that drug? Was Valtrex helpful to keep viruses under control?
Any thoughts or experience?
Posted by lax mom (Member # 38743) on :
Stanford CFS does a Valcyte protocol for HHV-6...I think I read that in one of timaca's posts. Search for her posts, very detailed and informative.
I wish my LLMD would address my high HHV6 and Coxsackie B3 titers I'm on every abx imagineable and my low grade fevers/chronic fatigue won't budge.
Posted by baileypup (Member # 22824) on :
laxmom, I've read a number of posts from Timaca, way back on the cpn website and know of Dr. Montoya's work with CFS and viruses. I need to look it up again, so thanks for reminding me.
I'm not sure if I really need the heavy-duty Valcyte or maybe could do ok with Valtrex on an ongoing basis. Reading some of the old posts, it appears there are a number of lymies on Valtrex, so I may start with that.
Posted by lax mom (Member # 38743) on :
I also read on the Stanford website that Equilibrant is used for Coxsackie.
Posted by timaca (Member # 6911) on :
I've been on valcyte (9 months); I'm currently on valtrex and I was on oxymatrine for a couple of years (I'm weaning off that now).
Valcyte did a good job of knocking back the HHV-6 and HSV1 in me. It is expensive and has black box warnings that go with it. We are now trying to use Valtrex to knock back the HSV1 as it seems to have reactivated. (The doctor wanted me on valcyte again but I preferred to try to up the valtrex dose first). Oxymatrine did knock back the Coxsackie B in me, but it reactivated again while I was on it (based on antibody titers and symptoms).
Baileypup, perhaps you can get some recent lab work done as suggested on the Stanford website (go to the patient care tab and follow the steps outlined there.) Based on your test results your doctor can decide between valcyte and valtrex for you.
Laxmom~ I wish you could address the HHV-6 and Coxsackie B too...... Perhaps you could show your doctor the Stanford website???
Best, Timaca
Posted by WhitneyS (Member # 25666) on :
i did Valcyte for about a year it did drop my EBV and HHV6 levels, but they were still boarderline positive.
I then switched to Valtrex for about 6 months and that didnt do much either.
I was muscle tested for different herbs and supplements and i think thats helping more now. If you can find a good Dr K. trained muscle tester i really think that could save you a lot of time-- they can test valcyte vs. valtrex too-- and see which one is better for you.
No side effects for either. Valtrex does not work on HHV-6 all so keep that in mind.
Posted by lax mom (Member # 38743) on :
I wonder if I could jst try the Equilibrant and see if it works?
I read somewhere that you shouldn't take it if you have a tendency toward going auto-immune...is that accurate?
Posted by baileypup (Member # 22824) on :
Thanks Timaca and Whitney for your recommendations.
I do believe in muscle testing and bio-energetic testing. I have been going to a practitioner who uses Zyto and muscle testing, and it was determined that my viruses were activated. I'm now on a homeopathic remedy for viruses. That's how I knew for sure that this new fatigue and feeling lousy was viral related. I'll have to get retested through Focus Labs.
It's weird though, all throughout my lyme treatment I've had varying degrees of elevated viral titers, but didn't feel fatigued until now. I wish there was a way to keep the virus suppressed and not having to juggle which one is activated and what antiviral to throw at it.
There has to ultimately be a way to get beyond treatment. I don't want to go on forever throwing antibiotics or antivirals at whatever symptom reemerges. The homeopath said that we need to fix our bodies on an energetic level to get beyond this.
Posted by amk33 (Member # 13206) on :
I did Valcyte a while back for a long course, something like 9 months. I noticed no improvement, and, my viral numbers actually went up! My llmd was perplexed. I have high EBV, CMV, HSV, HHV6, and parvovirus.
Posted by timaca (Member # 6911) on :
lax mom~ I do know two people who tried the White Tiger brand of oxymatrine. One is still on 1 tablet a day for she feels it helps her. I don't know if the other is still taking it or not.
![[Frown]](frown.gif)
I'm on every abx imagineable and my low grade fevers/chronic fatigue won't budge.