Valcyte (valganciclovir)
Is primarily used to prevent cytomegalovirus infections in transplant patients. It is also FDA approved to treat CMV infections in HIV/AIDS patients.
Like HHV-6, cytomegalovirus is a beta-herpesvirus
Valcyte Could Help in Chronic Fatigue Syndrome (ME/CFS) Because…
it is effective in treating several types of herpesvirus infections known to occur in the disorder.
Chronic Fatigue Syndrome (ME/CFS) Physicians Report…
A range of ME/CFS physicians have provided their assessments of Valcyte’s effectiveness in this disorder. Calling Valcyte a ‘significant step forward’ Dr. Guyer reports ‘encouraging results’ from a relatively small number of patients.
Dr. Holtof finds Valcyte effective in a subset of patients with evidence of herpesvirus reactivation (high IgG/Ea levels for EBV, HHV-6, CMV) and immune activation/suppression (high RNase L activity, low NK cell activity).
Dr. Peterson’s decades long focus on treating immune dysfunctional ME/CFS patients has lead him to assert that 6 months of treatment is necessary to get significant benefits. Kristin Loomis, Director of the HHV-6 Foundation, agrees, stating that long term treatment is necessary to overcome the long term immune suppression (6 months) caused by the herpesviruses found in ME/CFS. Dr. Enlander reports its effects range from highly dramatic to minimal.
Given valcytes potentially serious side effects, Dr. Podell feels ME/CFS patients with a ‘decent quality of life’ not try Valcyte.
Chronic Fatigue Syndrome (ME/CFS) Studies
Dr. Montoya’s 2006 study found that 6 months of Valcyte treatment resulted in sometimes very dramatic improvement in 21/25 EBV/HHV-6 infected ME/CFS patients with some disabled patients being able to return to work or full-time activities. Minimal side effects were found and no relapses occurred.
That preliminary study lead to a double-blinded, placebo controlled trial beginning in 2007. The full results have not been published but were less positive. A 2012 chart review from Dr. Montoya’s practice indicated that 52% of patients reported 30% improvement in cognitive and/or physical functioning. Longer treatment times that were very significantly (p< .0002) associated with improved response validated both Dr. Peterson’s and Dr. Lerner’s experiences treating ME/CFS patients.
Chronic Fatigue Syndrome (ME/CFS) Patients Report
I know of two patients who failed miserably on Valtrex only to respond very favorably to Valcyte. One patients shocking decline on Valtrex was quickly reversed on Valcyte and he returned to full health.
Dose
Dr. Lerner’s Valcyte Protocol for ME/CFS – Dr. Lerner recommends “valganciclovir (Valcyte) one 450-mg capsule daily for three days, followed by two 450-mg capsules in the morning daily. Liver function tests are studied very carefully. If there is any abnormality, one alters the dosage. Given the patient’s ability to safely tolerate two 450-mg capsules, dosing can be increased to two, 450-mg capsules in the morning and a one additional 450-mg capsule twelve hours later. Liver function tests, again, must be studied carefully and frequently.
Both valacyclovir and valganciclovir are absorbed with a 20% increment if there is food in the stomach.”
Side Effects
Common side effects are diarrhea, nausea, vomiting, fever and shaky movements (tremors). Valcyte can cause anemia, lowered white blood cell counts, liver toxicity, lowered blood platelet levels, lowered fertility and more (and the drug may be carcinogenic as well :)). Increased risk of infection, anemia and bleeding is present.
At a Simmaron Roundtable, Gunnar Gottschalk, Dr. Peterson’s research assistant, reported that in general Dr. Peterson’s patients tolerate Vistide (Cidofovir) better than Valcyte.
Patients are monitored up to twice weekly in the beginning of treatment for liver toxicity. Despite the hoary warnings, side effects were not an issue in the Montoya ME/CFS studies.
Cost
Valcyte costs about $2,000/month in the U.S.
