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 assists with sleep and reduces pain.
Specifically it is the only drug known to reduce the frequency of types of
brainwaves (delta intrusions) that appear to impair deep sleep in ME/CFS and FM.
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, that
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 ME/CFS/FM 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.
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 date rape drug because of its ability to induce
amnesia when combined with alcohol. It can only be obtained from a special
compounding pharmacy. Its tight regulation has pushed up its cost to
approximately $200-$500/month but is generally covered by insurance.
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Dr. Ross and Marion Hauser. Xyrem in CFS
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.