Valcyte is certainly a consideration for people who have severe Chronic Fatigue Syndrome. I certainly support anyone who chooses any route which works for them, but I'll be honest and say that I have concerns about Valcyte.
My concerns are this: an estimated two-thirds of CFS patients have bacterial infections. If you take an antiviral drug, that will suppress the immune system...
Hi jason,
The problem is... many antivirals do not work for CFIDS patients. However, there is a research drug called Ampligen that has helped many patients with CFIDS. The problem ? It cost $20,000 a year and I believe it still isn't FDA approved. Also, this is something that I believe you need to take for the rest of your life.
Another option would be Valcyte, another antiviral.
I would think that whatever your doctor is telling you, is going to be the best for you. Also, without a range on your EBV tests, I can't say for sure if either is high, but given that you've been diagnosed with CFS, I would be quite surprised if your EBV levels were NOT high. I wish you the best, and please keep us updated on how things are going!
My physician has me addressing the bacterial issues (mycoplasmas, etc) that is the underlying cause of my illness (my opinion along with some other physicians) and is waiting for the results from the next Valcyte trial. Since I am making progress on my current treatment, I may decide to stick with it, although it takes years.
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.
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.
is there a possibility that the sight might come back or is my deduction probably correct and the vision is gone forever? What are the possibilities that this could surge up into the other eye or does the shingles tend to stay on the one side of the original effected side? Also the doctor who is seeing me thought I had been put on valcyte and didnt realize that I wasnt on any antibiotic when the pain initially started...would that have had any effect on the outcome?
m not even sure if this is what caused my CFS and FM. My tests, now almost 4 years later, for EBV are still in the chronic/high range. I get tested about once a year to see how it's going.
Either way, we are all sick and tired of being sick and tired. Doctors and people in general these days seem to be apathetic to our plight, if you have a virus there's nothing they can do and if you have chronic pain there's nothing they want to do unless you are dying.
I felt like it was taking a long time to get over my jet lag. I was exhausted for a week or two and it never really got much better. I have felt tired, regardless of how much sleep I get since then. In December 2016 I went to an internal medicine doctor to have some blood tests done to figure out what was wrong. They came back positive for Cytomegalovirus (results attached - IgG level at 5.5). The doctor told me there wasn't much I could do and to check back with him in a month.
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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.
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