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After being sick for many years and being treated for both Lyme and Candida with significant improvement, I still experienced exercise intolerance and frequent colds.
My doctor started giving me antiviral treatment since I test high for EBV, CMV, and HHV6. I have taken Acyclovir, Valtrex, and Famvir for CFS/ME at different times over several years with not much benefit.
Recently, my doctor decided to give me a trial of Valcyte to give me a push towards greater health. I have been on Valcyte 450 mg twice per day and Famvir 500 mg twice per day for 6.5 months. I did not notice that much in terms of positive or negative effects, although I was able to very gradually increase my walking during that period.
Unfortunately, at the 6 month point, I developed pretty bad and constant headaches, physical weakness, sore throat, and swollen glands. Two weeks later, my doctor told me to take a break from the medications. But, 3 weeks after stopping the medications I still do not feel any better. I have felt terrible for 5 weeks now. My blood chemistry panel is totally normal (white blood count, liver, kidneys, etc...).
I understand that Valcyte does not cause a Die-Off, but can cause an IRIS reaction. Has anyone had a worsening of symptoms while on Valcyte? If so, what symptoms did you have? Also, how long after stopping the Valcyte did your symptoms continue? Were you able to re-start the Valcyte at some point?
I have tried Cholestyramine, Lipospheric Glutathione & Vitamin C, Cortef, Resveratrol, Vitamin D, and Milk Thistle for symptomatic relief. But, it does not feel like anything has helped. Has anything worked for you if you had an IRIS reaction?
Last, I had hoped that if I was having an IRIS reaction, it would improve when I stopped the Valcyte, but it hasn’t. Also, I have read that after the IRIS ends, patients often feel much better overall from their CFS/ME. But, I am starting to lose hope that it is an IRIS, and I am thinking that perhaps I have somehow experienced a CFS/ME relapse even though I have not had a relapse for several years. Did anyone have a relapse while taking Valcyte?
Thanks so much for any help you can give!
My doctor started giving me antiviral treatment since I test high for EBV, CMV, and HHV6. I have taken Acyclovir, Valtrex, and Famvir for CFS/ME at different times over several years with not much benefit.
Recently, my doctor decided to give me a trial of Valcyte to give me a push towards greater health. I have been on Valcyte 450 mg twice per day and Famvir 500 mg twice per day for 6.5 months. I did not notice that much in terms of positive or negative effects, although I was able to very gradually increase my walking during that period.
Unfortunately, at the 6 month point, I developed pretty bad and constant headaches, physical weakness, sore throat, and swollen glands. Two weeks later, my doctor told me to take a break from the medications. But, 3 weeks after stopping the medications I still do not feel any better. I have felt terrible for 5 weeks now. My blood chemistry panel is totally normal (white blood count, liver, kidneys, etc...).
I understand that Valcyte does not cause a Die-Off, but can cause an IRIS reaction. Has anyone had a worsening of symptoms while on Valcyte? If so, what symptoms did you have? Also, how long after stopping the Valcyte did your symptoms continue? Were you able to re-start the Valcyte at some point?
I have tried Cholestyramine, Lipospheric Glutathione & Vitamin C, Cortef, Resveratrol, Vitamin D, and Milk Thistle for symptomatic relief. But, it does not feel like anything has helped. Has anything worked for you if you had an IRIS reaction?
Last, I had hoped that if I was having an IRIS reaction, it would improve when I stopped the Valcyte, but it hasn’t. Also, I have read that after the IRIS ends, patients often feel much better overall from their CFS/ME. But, I am starting to lose hope that it is an IRIS, and I am thinking that perhaps I have somehow experienced a CFS/ME relapse even though I have not had a relapse for several years. Did anyone have a relapse while taking Valcyte?
Thanks so much for any help you can give!