Anti-Viral Making Me Worse? What To Do?

[HopeSprings]

Been taking an anti-viral to "treat" EBV. I thought it was going to be ok, but I seem to be going downhill. These past few days have been worse than ever. How long would you give it? She said it could take months to treat and that's fine, but I can't afford to feel worse. If I give up now though I'm throwing this whole plan out the window.

[derekliz]

I had reactivated EBV which was diagnosed with and EBV DNA test. I started olive leaf extract (pill form) and red marine algae and several months later tests came back negative. No side effects for me with the supplements.

Good luck!

Liz

[LindaJoy]

Wow, Liz. Your treatment with natural supplements sounds a whole lot healthier and it worked. I may be facing treatment for viruses, too, so this is interesting to me.

Naomi, if you decide to stay on the medication, I've heard that you feel sick at first, but then, around week three or four, you begin to feel better. Dr. Montoya, at Stanford, said this, I believe. He said he expects it in his patients.

Hope this helps a bit.

Lindajoy

[derekliz]

LindaJoy. I tried the supplements figuring I had nothing to lose. Maybe the virus ran it's course.or maybe the supplements worked.

I went to my local nutrition store and there is a lady there who knows kineseology (sp). She said that is what I needed so I bought them and came home and read about it.

The infectious disease md would not give me any antivirals. The dosage i take is below my signature. The results were from not the regular EBV panel but a Quantatative EBV DNA test which my dr ordered because she said sometimes the levels are elevated with chronic fatigue. Hope that helps!

Liz

[HopeSprings]

Thanks for the info derekliz. Maybe I'll try that if this doesn't work out. I really hate medication.

Linda - did Dr. Montoya say that in his video? I didn't realize that was the case. I'm trying not to jump to conclusions. There are times when things get worse for other reasons (an impending cold, hormonal fluctuations) or for no apparent reason. It may not be the medication, but it's tempting to think so when you start something new and then feel worse! I also did the IV saline on Saturday, breaking my rule of not trying more than one new thing at a time. But I doubt that would cause this. It's always the neurologic symptoms - the perceptual/cognitve stuff that gets worse. It's like anything I try hits my brain like a ton of bricks. I'm taking the night off from the medication because I have work to do tomorrow and have to be able to think. This is so frustrating and confusing.

[ramakentesh]

since the evidence that chronic viral infection is behind even any CFS etiology is sketchy at best, and the evidence to support the use of anti virals in CFS isnt compelling, Id think twice about using these medications.

[HopeSprings]

Rama- I know, I agree. Desperation, you know...

[targs66]

hi Naomi -

I tried an anti-viral called Amantadine several years ago. I wasn't under the care of a CFS doctor at the time, but a family member had a prescription for it to help with his MS fatigue (it's actually an anti-viral but some MS patients have used it with success for fatigue, if I understand correctly). He wasn't crazy about the effects and so gave it to me: I had heard about it being used in connection with CFS.

I didn't do well on it. It made me super-jittery and wired but didn't erase the cognitive difficulties.

I know that's not much information, but thought every little bit might help. Keep us posted on how you're doing, and good luck.

-Targs

[ramakentesh]

I understand very well.

But remember that it is unusual for a chronic viral infection to strike 80% females. The methylation theories are at least a little more compelling, even if its actually a patient rather than doctor theory.

[HopeSprings]

But remember that it is unusual for a chronic viral infection to strike 80% females.

Are you saying the virus theory doesn't make sense because why would they affect primarily females? In other words, the idea that viruses are the root cause is silly because why would they have a female preference? Or am I misunderstanding?

[ramakentesh]

Well I cant think of any other viral infection that had a differing sex ratio.

if you have small fiber neuropathy have you talked to your doctor about supplements like L-cartinine or Alpha lipioc acid? D-ribose?

[HopeSprings]

Rama - What do you think of all the people who claim they've been helped by anti-virals and some of the studies showing people have been helped by them? Not being combative - just trying to make sense of the information and like your input.

I asked a neuro who (supposedly) specializes in SFN about alpha lipoic acid and he said he hasn't had much success with it in his patients, but that I can give it a try. It's on my list of things to try - probably next.

[ramakentesh]

Well some have done ok. Ive read about them. Some of the ones i read about did not have OI but some did and claim that it cleared it up. Weirdly there are articles on antivirals helping patients with Ankylosing Spondylitis as well. No idea why. Worth a try if you have the money and time, but there are some flaws in the argument for its basis.