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). Could be measurement variation, but anyway, my antibody response hasn't dropped any.
Have others found improvement in symptoms due to antiviral drug?
Has the bloodwork testing changed any due to the antiviral drugs?
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. Many physicians are hesitant to prescribe this drug for their patients because it is such a powerful drug, that it lowers your white cell count and other labs. I could just imagine takingt this medication and then catching a cold. Yikes ! Dr. Jose Montoya at Stanford University had a successful outcome for his first research trial using Valcyte. I believe the results of his second study are still pending.
Lastly, two-thirds of CFIDS patients have bacterial infections. Another thing to think about is if you are one of these people who have L-form bacteria, then it probably wouldn't be a good idea to take antivirals. Testing for this sub species (and others) mycoplasma is not easy and insurance may not cover the expense. Some physicians would just prefer to prescribe antibiotics and see if their patient has any herxing symptoms. Other physicians will order a vitamin D level, along with a vitamin D 1,25 hydroxy and look for vitamin D dysregulation (Marshall Protocol). I believe Dr. Marshall says that vitamin D dysregulation is due to intracellular bacteria.
I hope this helps ! Here are some links for you, so you can discuss these options with your physician:
Anti-viral treatments for Chronic Fatigue Immune Dysfunction Syndrome:
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