My daughter was tested and her igg came up positive but her igm negative. Her lyme doctor wanted her to go on Valcyte but I heard this med can be dangerous. What is this virus??? Has anyone been on this med?
[ 05-29-2009, 08:26 AM: Message edited by: dian ]
Posted by timaca (Member # 6911) on :
Dian~ Your post appears to be incomplete. I do (did) have HHV-6 and I was on valcyte for it.
Best, Timaca
Posted by SForsgren (Member # 7686) on :
Personally, I prefer something like Lauricidin than Valcyte though I have done both.
As for HHV6, I'd argue that almost everyone here has it.
Posted by hiker53 (Member # 6046) on :
HHV6 is what causes croup in children, so almost everyone is going to have it in their bodies, regardless of whether they have lyme or not. My GP who does not have lyme says he tests positive for it and he is not ill at all.
Posted by timaca (Member # 6911) on :
The following is from the HHV-6 website (testing link):
Nearly 100% of us have been infected with the HHV-6 virus by early childhood and have antibodies to it, and at least a 30% of us have small but detectable levels of latent virus in our blood1 2, so the relevant questions are not whether you have the virus, but rather how much virus do you have, and is it active or latent?
Elevated IgG antibody levels can suggest, but not prove active, chronic infection. In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture. (Wagner, Journal of Chronic Fatigue Syndrome)Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself. In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms.5 Elevated IgG Antibodies to HHV-6 cannot tell you for certain that the infection is active, but high titers support a clinical diagnosis. Similarly, elevated EBV VCA (late antibody) titers cannot indicate with certainly that an infection is active. However, EBV Early Antigen (EA) antibodies disappear rapidly after an infection is over, so elevated EBV EA antibodies do predict active infection.
Posted by bettyg (Member # 6147) on :
breaking up long paragraph of statistics for us neuros to read..betty
quote:Originally posted by timaca:
The following is from the HHV-6 website (testing link):
Nearly 100% of us have been infected with the HHV-6 virus by early childhood and have antibodies to it, and at least a 30% of us have small but detectable levels of latent virus in our blood1 2, so the relevant questions are not whether you have the virus, but rather how much virus do you have, and is it active or latent?
Elevated IgG antibody levels can suggest, but not prove active, chronic infection.
In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture.
(Wagner, Journal of Chronic Fatigue Syndrome)
Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself.
In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms.5
Elevated IgG Antibodies to HHV-6 cannot tell you for certain that the infection is active, but high titers support a clinical diagnosis.
Similarly, elevated EBV VCA (late antibody) titers cannot indicate with certainly that an infection is active.
However, EBV Early Antigen (EA) antibodies disappear rapidly after an infection is over, so elevated EBV EA antibodies do predict active infection.
since i have hhv6 too, i wanted to read this...bg
Posted by CherylSue (Member # 13077) on :
She took valcyte for 6 months. It was a living hell.
Valcyte made her sicker and weaker, and then produced modest improvement, which was not sustained for any prolonged period.
HHV-6 titers dropped dramatically once tx for LD began. Titers now are significantly lower, like 1:320.
She is still sick, but IMO, valcyte was not worth the hell she went through while on it.
If I knew then what I know now, I would have put her on tx for lyme and cos and skipped the valcyte altogether.
However, at the time, her doc and I felt it would be a disservice to her to not try valcyte, given all the info about Montoya.
IMO viral titers for HHV6 and EBV can be elevated b/c of lyme and associated co-infections.
DD remains on valtrex for EBV, which has kept EBV titers low, and continues tx for Lyme and cos. HHV-6 titers remain low.
Would never allow her to take valcyte again.
IMO, treating lyme and cos before addressing viruses is the way to go.
Just wish I knew then what I know now.
Posted by AnnaL (Member # 18464) on :
My LLMD says to start treating for Lyme first, then see if the viruses can be kept in check by the body's immune system.
If improvement is slow, then he adds in a natural anti-viral. I take Lauricidin/monolaurin. Way cheaper than Valcyte, and probably easier on the body too.
Posted by Skyler (Member # 11549) on :
This is all very interesting. I had never heard of HHVV-6. This is good to know about.
Thank you so much for creating this post and everyone for putting up information about this.