karenl
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My doctor wants me on Valcyte for EBV for six months. My early antigen was high.
I am afraid because I heard Valcyte has a black box warning.
Is Valcyte safe for long term use. I am also on doxy and azithromax.
Thanks for all information. Karen
Posts: 1834 | From US | Registered: Oct 2008
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joalo
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-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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karenl
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Posts: 1834 | From US | Registered: Oct 2008
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Valcyte has been used the past few years for elevated HHV-6 levels with varied results.
Doesn't make sense that your doc would want you on this med for 6 mos for elevated EBV levels.
From what I understand (and I am not a doc) Valcyte is not used for elevated EBV levels. High EBV levels can be treated with an antiviral like Valtrex, which is much less toxic than Valcyte.
Some have gotten better on Valcyte--apparently their symptoms were due to HHV-6.
But there are a substantial amount of people who did the 6 month protocol of Valcyte who did not improve. A lot of them went on to treat Lyme/coinfections.
From what I've read, Lyme/cos does a number on your immune system, making you vulnerable to various other coinfections, including viruses like HHV-6.
Treating the viruses with antivirals like valcyte might very well do nothing when you have a raging bacterial infection like Lyme (not to mention coinfections) that is suppressing your immune system.
The challenge is finding out what your primary problem is: Is it strictly viral with no bacterial coinfections or is it primarily bacterial infections with opportunistic viral infections on board?
There is no way of knowing for sure because the tests for Lyme and bacterial coinfections is mediocre at best.
Valcyte is a powerful antiviral with significant side effects. I personally wouldn't use it unless there was a very good reason to do so.
Google valcyte, Montoya, HHV-6 for more info.
Are you seeing a LLMD? If not please do as I've not heard of any LLMD recommending Valcyte. And I've not heard of any CFS doc recommending Valcyte for elevated EBV levels.
I'm not an expert or a medical professional--this is just my 2 cents for what it's worth.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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karenl
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AlanaSuzanne,
thank you for the detailed information. I did not start with Valcyte for now but I take the acyclovir. I guess my doctor will not like it. You say:
"The challenge is finding out what your primary problem is: Is it strictly viral with no bacterial coinfections or is it primarily bacterial infections with opportunistic viral infections on board? "
I have chlamydia pneumonia, not sure about lyme and co. Would the cpn be enough for bacterial infection...?
My HHV 6 IGG is 1:40 High. Should be 1:10. Would that mean I should take Valcyte?
I also have high Coxsackie and high Cytomegalo.
EBV: EBV Ab VCA IGG is more than 8 High ( range 0.0-0.8) EBV nuclear Antigen Ab High more than 8 ( 0.0 -0.8) EBV Early Antugeb AbProf QN is 1:80 High Should be less than 1:20.
But you say for EBV the acyclovir should be ok.
Yes I have LLMD who is not sure if I have lyme. He wanted the virus doctor. The virus doctor thinks lyme takes three weeks. Both do not believe that cpn is a bad infection and needs to be treated by a protocol.
At the moment I decided for the cpn protocol, the acyclovir for the EBV and antiparasitic herbs.
But I am not treating now the HHV6,coxsackie and cytomegalo.
posted
Look into Immunovir as well. I hear that the valcyte works well. But my doc prefers the Immunovir- out of Canada over the Valcyte.
It is pulsed and I have just completed my 1st month after 6 months of valtrex. i think it made a difference...but time will tell.
Posts: 151 | From south east | Registered: May 2010
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dmc
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posted
I take it. It's been fine.
I even did 4,800 mg a day yes, 4,800 of Acyclovir for a few yrs for the EBV prior to lyme dx, ...rxd by the founder of LDN.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Hi Karen, valtrex (brand) is valacyclovir (generic), acyclovir (generic) is zovirax (brand). They aren�t exactly the same (unless I�m missing something), but they do sound pretty similar.
I wouldn�t worry about your doctor not liking your decisions. It�s your body, so you�re the one who has to like it plus you are the one paying him, right? (I am a bit attitudinal when it comes to these things )
CpN from what I understand is bacterial. There is a CpN website which I can�t remember the name of, but if you google it, you�ll find it. (CpNhelp.org?) You�re on doxy and zith, which are both good for Lyme as well. And the antiparasitic herbs could be useful too, as could the acyclovir depending on your circumstances.
There are other coinfections like babesia, erlichia, bartonella. You should be evaluated for these too especially if you have symptoms.
Your HHV-6 level is not high. My daughter�s was something like 1:5140 (don�t recall the exact number). I am not a doctor, but if one of my kid�s HHV-6 levels was 1:40, no way would I put them on valcyte with that result.
Your EBV levels are not high either.
And FWIW, both your HHV-6 and EBV levels that are a tad out of range are IgG (indicating past exposure). IgM is indicative of current infection, but when IgG levels are off the charts, then there is reason to monitor closely and possibly treat.
I am not experienced with Coxsackie or CMV so can�t really comment.
Do you have a good LLMD??? A good LLMD wouldn�t send you to a �virus doctor� with the low EBV and HHV-6 levels you have.
Are your Coxsackie and/or CMV levels high? Maybe that�s why the LLMD sent you to the virus doc?
I don�t know much about CpN, but it sounds like you disagree with both docs. Might be time for you to see another LLMD for a second opinion?
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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karenl
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AlanaSuzanne,
I am well informed about cpn and doxy and zith is treating cpn. All doctors are thinking cpn is treated in weeks but it is as complicated as lyme.
I am not disagreeing with both docs but they both have no clear diagnosis. My Coxsackie and CMV are high. I will ask what they are planning. Great you could provide so much information.
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