I just joined this forum and have a question regarding my EBV tests and Valcyte. My doctor wants me to start Valcyte for my elevated HHV6 and EBV antibody levels. I will post them and if anyone here has any thoughts on them I would very much appreciate it. I know this isn't an HHV6 forum but I will post the test results as well.
HHV6 Ab IgG 21.44 (range 0.1-1.
s (Stanford University) Valcyte trial. Fortunately... he was one of the lucky ones. The first Valcyte trial was a success, but I've heard (without seeing the results) that the second trial wasn't. One woman claimed on the internet that she became worse after taking Valcyte. Of course Valcyte is a nasty drug and this trial and many physicians won't prescribe it unless you are disabled.
I was dx-ed with CFIDS due to my neurological/pain symptoms along with my bloodwork that showed high EBV and HSV-1. I was moderately high on a couple other viruses (can't remember names). I went on Valtrex (1g/day) but haven't noticed any improvement or any change after 4 months. I had my bloodwork retested (now 4 months later) and the viruses looked to be the same or higher (EBV is 4x higher and I believe I was tested by same lab).
Since EBV is often linked with CFS, it seems more natural to combine these into single forum. If do I want to post, I'm not sure which forum to post.
It sounds like you have EBV virus induced CFS. EBV is notorious for causing peripheral neuropathy and autonomic system disorder which are the symptoms you describe. I had all this tested at a special neurodiagnostic lab and that's what I have. It sounds like you're taking all the right meds. There's also these stocking you can wear. google peripheral neuropathy treatments. Also check out a dr who'll treat your ebv/cfs with anti virals such as valacyclovir or valcyte.
That is a good video. It is nice that the doctor is making more people aware that CFS isn't ordinary tiredness.
I do have a question for you about the sore throat associated with CFS. Is it viral or allergy in nature?
I ask because I was finally diagnosed with FMS, but I also have MCS, so I have a lot of allergies. I often have a sore throat that seems to be associated with the allergies.
Wow... I just read your journal and all of your daughter's symptoms. Bless your hearts !
Here is the information on EBV from the CDC below. From what I've read from the CFS experts, the sooner you treat EBV, the better. I strongly believe this and I honestly wish I could go back to the day when I had mono. I know now what I would have done to help prevent CFS and/or lingering fatigue.
So what are your daughter's physicians saying ?
Below is one of my responses to a member in the EBV forum who was just diagnosed with CFS. His physician had prescribed him an antiviral and he didn't have much success.
I am being treated for a bacterial infection and having success with that treatment. Antibiotics or natural formulas are all you need. However... I'm not going to lie to you.
approximately 90% of people have acquired EBV by age 30 (and we can logically assume that number would be even higher for older people). Therefore, for any cases of cancer in people age 30 or over (which I think is easily the majority, although I don't have numbers on that), 90% will have EBV. So of course it looks like there could be a link there, but that same 90% EBV rate applies to non-cancer patients as well.
CMV is the most common infection is post transplant patients which is why we recipients are prescribed Valcyte for a period of months after our transplants as part of the anti- fungal, anti-bacterial and anti-viral regime of meds along with out immunosuppressants.
In the vast majority of patients, CMV disease responds to treatment with intravenous Cytovene/ganciclovir.
PlateletGal asks “What are your thoughts on Valcyte for Chronic Fatigue Syndrome ?
And does Valcyte kill mycoplasmas ?”
PROF. NICOLSON'S RESPONSE: Valcyte does not kill mycoplasmas and is generally used against certain viruses. Antibiotics are used for intracellular bacterial infections like Mycoplasmas.
However after about a week and a half to two weeks the pain went away. I was started on Valcyte about 2-3 weeks after all this. I also had a blood vessel rupture in my eye towards the back making it almost impossible to see anything when I went to try and find out what was going on (Have been seen by three different optometry clinics). I Have also been using Predisonal 4-6 times a day and Cyclopentalate 2 times daily.
Why do that when we have Valcyte (also a little bit frightening, but probably not as bad as the chemotherapy treatment) ?
I do plan on adding Ampligen to the list of CFS treatments. I also need to add that Valcyte trial. But of course... some of these treatments for CFS are risky. I want to include my personal thoughts on that as well (and anyone elses).
It is working, although it takes years and can make you feel worse. But it is intended to cure CFS... just like the drug Valcyte. But Valcyte is an immunosuppresant and has some very toxic and possibly deadly side effects.
If you have any questions for Dr. N... zip them my way before 5 PM (Pacific Time) today. Send them via PM or note.
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