Topic: Was it all Lyme or was some of it EBV? UPDATE on treatment
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
About 3-4 months ago I was diagnosed with elevated Epstein Barr Virus, with an elevated antibodies of 2400+. My symptoms had been profound fatigue, to the point of not being able to stay awake no matter where I was and cognition, just shot. It didn't feel like the Lyme symptoms though.
Even though I have achieved a high degree of remission from Lyme, getting the brain fog to clear has been difficult, it has been real stubborn.
So back to the EBV, I was started on Valcyte about 3 months ago, which is the much stronger version of Valtrex, it is actually used in treating AIDS. To take it for 6 months.
Verdict is........I am impressed and thrilled. Felt pretty yucky the first week or so, with nausea and loss of appetite. Then a little bit, by little bit, my energy levels started increasing. Then at about the 2 month mark I realized that I was feeling pretty good.
Then, what I was really exceited about was the brain fog started lifting in a way, I can't explain. I don't know that I have had my wits about me like this in who knows how long. I can actually multi task!!! I have started cooking again, I mean more than just opening a box or can. I had a real hard time following recipies, but feel like I can do it now.
I still have bad days, and I am not up to an energy level I hope to achieve, but I am really happy at the progress I am making.
My doc was very exceited too. This is new protocol. My antibodies titer dropped down to 1400 too! I get tested every 2 months, titers and liver. I have about 3 months to go.
PS: It was thought that maybe this was causing my eye problems, dry eye, pain around the orbit, EBV is related to herpes, and a blister on my eyeball. It seems that it might be getting better. One eye feels a lot better, the other is still pretty bad, but does seem to be better. We are working on getting a Valtrex type eye ointment. Problem is, you can get it everywhere but here in the US.
I think this is another rock you may want to turn over. EBV and Lyme seem to enter in when one or the othter opens the door. Often present together. Which might come forst don't know. But it is worth a look in my opinion, and I had no clue it was a problem for me.
Posts: 1251 | From california | Registered: Apr 2005
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Makes perfect sense to me.
Taking an anti-viral will be one of my last steps.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Your high antibody to EBV does suggest active chronic infection. I'm glad that you are feeling better and that your titers are dropping.
You could also have HHV-6 infection. (which is treated with valcyte) For more info see www.hhv-6foundation.org.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
When I had the horrid fatigue last year, I requested a test for EBV -- came out at 3800! I've been on Valtrex since then, and it helps tremendously. When I took a break from the Valtrex, the fatigue came back full force, and resolved again when I went back on it.
I'm certain EBV was a big part of the equation... pretty much everyone has had EBV at one time or another, and generally it stays in remission in healthy people, but Lyme tends to cause it to reactivate into a chronic state from what I've read.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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