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Author
Topic: xyrem- drug for narcolepsy, fibro, now lyme
katrinab
LymeNet Contributor
Member # 30330
posted 04-20-2014 05:08 PM
xyrem, a drug mentioned in the book "why cant i get better?" by a famous lyme doc is a drug that has interested me even before i read the book. it is prescription GHB, it is usually prescribed to those with narcolepsy. narcolepsy is a sleep disorder that causes people who have it to have muscle paralysis during the day and have episodes where they fall asleep briefly which can be dangerous. the cause is thought to be a lack of rem sleep, those with the disorder typically dont enter rem sleep. i had a sleep study that showed i do not enter rem sleep, and studies done on people with fibromyalgia have this finding as well. xyrem helps people with narcolepsy enter rem sleep, and this helps with the sleepiness during the day and the sleep attacks as well. studies done on those with fibromyalgia using the drug have found that they have less muscle pain and fatigue during the day. i was diagnosed with fibro before lyme, because my main symptoms were fatigue and muscle pain. reading this i thought that the drug xyrem would help me but i thought i would have trouble getting it prescribed without having the diagnosis of narcolepsy. i dont enter rem sleep like narcoleptics but i dont have the muscle cataplexy typical of narcoleptics. however i convinced my lyme doc to prescribe it after telling him that the lyme doc that wrote the book i am reading prescribes it to his patients. he listened and then prescribed it to me. i havent received it in the mail yet (only one pharmacy in the u.s. dispenses it because it is highly controlled since it is known on the street as the date-rape drug) but i will post on here with my results. has anyone had this drug prescribed? what was your experience?
Posts: 723 | From boston,ma | Registered: Jan 2011
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Lymetoo
Moderator
Member # 743
posted 04-20-2014 06:12 PM
From the little that I know, I would approach it with caution. It's a drug of last resort. Do more homework on it! -------------------- --Lymetutu-- Opinions, not medical advice!
Posts: 96220 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted 04-20-2014 06:14 PM
I was under the impression that Vitamin B6 deficiency could also cause lack of REM sleep... -------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.
Posts: 4166 | From WA | Registered: Feb 2011
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patches10025
LymeNet Contributor
Member # 20983
posted 04-20-2014 07:06 PM
Try to buy it? Only the special 1% can pay for it!
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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Lymetoo
Moderator
Member # 743
posted 04-20-2014 08:27 PM
quote: Originally posted by Razzle: I was under the impression that Vitamin B6 deficiency could also cause lack of REM sleep... - Probably possible! -------------------- --Lymetutu-- Opinions, not medical advice!
Posts: 96220 | From Texas | Registered: Feb 2001
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Lymetoo
Moderator
Member # 743
posted 04-20-2014 08:29 PM
patches.. So Xyrem is expensive? -------------------- --Lymetutu-- Opinions, not medical advice!
Posts: 96220 | From Texas | Registered: Feb 2001
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patches10025
LymeNet Contributor
Member # 20983
posted 04-20-2014 08:46 PM
very. I believe it is over $12,000/month. I don't really know the exact # but insurance does not want to pay for I!
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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patches10025
LymeNet Contributor
Member # 20983
posted 04-20-2014 08:47 PM
Sorry maybe its only $2,000/month.
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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Lymetoo
Moderator
Member # 743
posted 04-20-2014 09:00 PM
Sheesh. I would think it would be a very dangerous drug. I know someone who looked into it at one time. She backed out. katrina... fix the candida issue and your sleep will improve. Guarantee! -------------------- --Lymetutu-- Opinions, not medical advice!
Posts: 96220 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted 04-20-2014 09:45 PM
Only $2000 a month is still too much for this canuck. Katrina-i hope it helps you. It is a clear liquid that resembles water. It is very important to keep it always in it's bottle, and to keep away from kids and teenagers. Kids may think it's water, and teenagers may wish to try it to get high, or to sell to their friends. It is very easy to OD on it. Such a small amount will make someone unconscious. It is a common drug used at raves, and also the date rape drug. I'm surprised he reccomends it, given the amount of OD's and deaths on it every year. But I truly hope it helps you to get a good nights rest. Did it say in the book whether patients were able to wake up, in emergency situations? Fire alarms etc? Maybe the doses are much smaller when used medically.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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