This is topic xyrem in forum Medical Questions at LymeNet Flash.


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Posted by keltyl (Member # 14050) on :
 
My LD is talking about xyrem, which I am not yet ready to agree to.

He mentioned something about a liquid which comes from Calif. Is all xyrem a liquid? This sounds like an out of pocket way to me.

Isn't xyrem very expensive anyway. When I look it up through my ins, the co-pay says $$$. Not sure how much that would be since there is no explanation.

Would love to hear from anyone who knows, and/or has had experience with this drug.
 
Posted by Lymetoo (Member # 743) on :
 
It's a rather drastic measure. I know others here in the past have used it. Did you try a search here on it?

Can you sleep at all?
 
Posted by peter j (Member # 11825) on :
 
I think some use it for sleep.
 
Posted by keltyl (Member # 14050) on :
 
Lymetoo..I did do a search but did not really find the answers to my questions.
 
Posted by djf2005 (Member # 11449) on :
 
It was designed for narcolepsy I believe.

It is about as strong as it gets for sleep aids.

It's designed to reset your cycle by taking it 2x nightly.

It can be quite expensive, but w/ a good ins. policy the co pay is around 60$ for a month.

I tried it w/ little success, but many have used it and it proved useful.

It is high in sodium, so if inflammation is an issue, I would not recommend it.

Otherwise, it wont hurt you, other than knock you out. It's an odd feeling.

It's also known as the street drug GHB, if that is helpful. (don't let that scare you, most sunbstances can be abused)

The key to Xyrem working is having the patient relax and allow is to take effect w/o freaking out because it literally is designed to knock you out.

If you are not sleeping at all, I would consider it.

If you are still sleeping some and have not exhausted other sleep measures, I would look into them first.

Perhaps getting some brain chemistry testing or speaking w/ your Dr about why you are not sleeping will result in a different answer rather than medicating. It's hard w/ lyme and co, I have been using sleep aids off and on for 3 yrs, sleep for some is one of the last things to re-regulate.

Best

Derek
 
Posted by keltyl (Member # 14050) on :
 
Thank you Derek.
 


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