posted
I have EBV and HHV6. I went to the LLMD for the first time on Friday. It was hard for her to draw defininte conclusions based on the fact that all I had was basic bloodwork with me, as well as Quest Lyme test showing two bands.
She obviously did a full workup but it isn't back yet. Hopefully she'll know the whole picture in a week or so and we'll have more to go on.
She was trying to explain to me (if I understood it correctly) that EBV and HHV6 can play off Lyme and vice versa and you can't just treat Lyme when you have those also going on, you have to kill off everything at once.
She said my EBV and HHV6 numbers have skyrocketed over the past year. The way I understood it (and I could be very wrong with my interpretation) is that the Lyme plays off of the EBV/HHV6 and thrives when that is present.
I tried taking Vatrex back in January and remember feeling crummy on it. They switched me to Amantadine. This new doctor (LLMD, now I am pursuing Lyme) feels that Amantadine does not attack EBV or HHV6 and I need to be on Valtrex to kill those viruses off.
So today is day two of Valtrex and I am so sick. I've barely moved off of the couch, my stomach hurts and I have a cap-like headache. I remember feeling more tired on Valtrex and the cap-like headache in January when I took it.
I know this isn't just a twist in the Lyme because before this medicine I was getting up and dressed everyday and doing a little bit each day. I was getting by. I was never laying on the couch, especially not sleeping on/off all day long.
Will my body adjust to the Valtrex or is this just the way it is?
Thank you.
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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posted
Valtrex gave me chest pains when I tried it years ago. However, I'm wondering why you're not taking Valcyte instead of Valtrex -- Valtrex is not really effective against HHV-6 per my understanding.
I think Valcyte is the only one that works on HHV-6, besides a rarer medication called Nexavir which I'm taking now.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Junegal~ Yes, valtrex can knock you down. Several of my friends have been on it. I have yet to start it, but my doctor wants me on it soon. (I was on valcyte for 9 months).
If indeed you have active HHV-6 you will need valcyte. Valtrex doesn't kill HHV-6.
Do you know your IgG antibody titers for HHV-6 and EBV?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I am confused what is this HV6 blahblah stuff you guys have??
I had mono and shingles (at age 19 and 21) and was treated with pretnisone. I wasn't diagnoised with lyme until I was 22 and I'm 24 now (crazy!)
I was broken out with hive for 8 months before I was diagnoised with lyme and the first thing my LLMD did was put me on 1500mg's of valtrex. My hives of 8months disapeared after 48 hours. I stayed on valtrex for almost a year trying to slowly get myself off of it. But we added in sinequan which is used as a sleep aid and anti-hystamine.
Sometimes I still break out in hives, usually when I am herxing and I have to now bump up my valtrex to 3000mg to get rid of the hives, but she doesn't understadn why I break out into hive and why the valtrex works.
I did test postive for the herpes virus of mono and shingles not the sexual one. Any insight you could share with me would be great!
Best, Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I've taken Valtrex for 2 years fro EBV, HHV6 and HSV.
It actually has even helped my pain levels I believe, small but signifcant, I once quit and my pain went up some.
Although Valtrex was specifically made to stop replication of HSV it has dropped my HHV6 and EBV titers but not my HSV titers! It is the preferred anti-viral of most LLMD's. Even the post above this one proves it helps different things I don't think most Md's understand or know why, but it just works.
Valcyte is the anti-viral known to kick your rear and make you feel really sick - like herxing. It is good if you have CMV.
Valtrex should work on your viruses just fine, it takes TIME - I have been through this.
Lindsay - all of us have dormant viruses that lay latent in our spine, all of us - 100% of the population is considered to carry dormant viruses. Had Chicken pox? Cold sores? Mono? and many more - some airborne go dormant but they can reactivate and be dangerous and painful and are common with lyme, called viral co-infections, here is more info: http://tinyurl.com/555wnz
posted
I took valtrex for 2 years for EBV before lyme DX . It got me to the point of getting out of my house daily and did really help . You will feel WORSE for a couple of weeks, because the viruses die off ( can not replicate ) . This is to be expected. I noticed a definite improvement within three months .
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I had the same reaction you did with the Valtrex, headache, nausea, felt like lead. So the Doc recommended that I start at a lower dose for a few days, and then build up. That helped me with the headaches. Still felt tired, but after a couple of weeks that waned as well.
I don't need to take it all the time. In the beginning, I took it for 2 months. Now, I only need to take it about three times a year for two weeks.
MAnda
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I was on Valtrex for several months to treat EBV. Herx reaction never went away. Though I was stil functional, I was worse than usual.
-------------------- I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today. Posts: 83 | From New Jersey | Registered: May 2008
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