Treatment

Treating Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: Xyrem

Xyrem is a central nervous system and respiratory depressant.  Xyrem is the trade name for gamma-hydroxybutyric acid or GHB, a neurochemical involved in regulating metabolism that is able to affect sleep. Sodium oxybate is the active ingredient in Xyrem. Xyrem has been approved to treat narcolepsy (severe daytime sleepiness) and cataplexy (sudden muscle weakness) and is in the last phase of clinical trials for fibromyalgia.

Xyrem May Work in ME/CFS/FM Because  it is the only drug known to reduce the frequency of the types of abnormal brainwaves (alpha intrusions) that appear to impair deep sleep in many CFS and fibromyalgia patients. It is also one of the only drugs known to improve both sleep and reduce pain. It may enhance the activity of two neurotransmitters, dopamine and serotonin, both of which may be deficient in ME/CFS. The highest concentrations of GHB are found in two areas of the brain that are of great interest to CFS and Fibromyalgia researchers; the hypothalamus and basal ganglia.

ME/CFS Physicians Dr. Teitelbaum flatly states "Xyrem is the most effective way known to increase deep sleep and raise growth hormone". Dr. Peterson reported that to his ‘amazement’ Xyrem helped with both sleep and pain in his ME/CFS patients with extreme sleep disorders.

Drs. Ross and Marion Hauser call it ‘probably one of the safest and most effective sleep aids that we know of.” They believe it may enhance growth hormone levels.  Dr. Klimas notes that Xyrem it induces 'slow wave' sleep -  the type of sleep most ME/CFS patients have the most trouble achieving.

Studies Two studies have found improved sleep and about a thirty percent reduction in fatigue and pain scores in fibromyalgia. Of particular interest was Xyrem’s abiity to reduce the frequency of anomalies observed in both FM and ME/CFS during sleep called alpha intrusions. Alpha intrusions involve the appearance of unusual high frequency brainwave patterns that are believed to disrupt deep sleep.

ME/ CFS patients Report  Click here to view ME/CFS patient’s reports on Xyrem.

Dose Dr. Teitelbaum recommends 9 cc's (4.5 grams) at bedtime and then about 4 hours later if needed.  Xyrem is fast acting and should be taken in bed.

Side Effects Xyrem can be habit forming. Patients in clinical trials reported confusion (2.5%), depression (3.5%), incontinence at some point (7%), sleepwalking (4%). Headache (22%), nausea (21%) and dizziness (17%) and others were also found.

Warning Do not take other sleep enhancing substances (alcohol, pain medication, muscle relaxants, sedative hypnotics, etc.) when taking Xyrem. Xyrem should be discontinued gradually. Rinse well with water and swallow after taking as Xyrem can damage tooth enamel.

Others  GHB is known as the   GHB is known as the date rape drug because of its ability to induce amnesia when combined with alcohol. It can only be obtained from a special compounding pharmacy. Xyrem's tight regulation has pushed up its cost to approximately $200-$500/month but it is generally covered by insurance.

_______________________

Drugs.com: Xyrem

Scharf MB, Baumann M, Berkowitz DV, J Rheumatol. 2003 May;30(5):1070-4. The effects of sodium oxybate on clinical symptoms and sleep patterns in patients with fibromyalgia.

Jacob Teitelbaum, MD., 2007. From Fatigued To Fantastic 3rd. ed., Avery Publishing.

Wikipedia: Xyrem