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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Desperate for restorative sleep!

perchance dreamer

Senior Member
Messages
1,688
Hi, there, @cbmtl. I haven't been tested for Lyme. I could well have it, but just feel as though I deal with enough as it is. I have terrible reactions to ABX, too, and go out of my way to avoid them.

I think I've read that ABX treatment helps mainly for recently acquired Lyme infections. I grew up in MS and played outside and in the woods a lot. My mother or aunt would sometimes put my sister and me in the bathtub at night and pick off ticks. (Ewww! Sorry about that image.) However, I don't know if those ticks from my childhood carried Lyme.

My best friend lives in Philadelphia, and she said Lyme is very common there. She's always enjoyed good health, but got a Lyme infection last year. She took the ABX and responded well. That might be because she had a recent infection.

Our member who seems to know the most about alternative ways to treat Lyme is Wayne. @Wayne, could you direct cbmtl to some of your discussions on this subject? Thanks.

I've only had a Rife treatment once, and it was for fibro pain. It actually made it worse temporarily, so I didn't pursue it. I've had health improvements since then, so it could be I would react differently now. I think Wayne has done Rife, too.

Good luck and keep us posted.
 

renerdrat

Every teardrop is a waterfall
Messages
46
Location
Temecula
hey, I just started using this forum... I have, I'm not sure what it is, similar to cfs but I can actually function okay, anyway not the point, just thought I'd add this..

I use this stuff called 1,4 butanediol it basically is xyrem (ghb) but, it's technically... a little more legal? (it terms into ghb in the body) hah... I dunno how to say it, basically you can buy it online very easily. I've taken it for quite some time for sleep. Actually if you can get gbl because your body actually has to convert 1,4 butanedol in the liver to make it bioavailable... gbl is another loophole kind of drug.

But xyrem is hard to obtain, and very expensive, 1,4, gbl, and street ghb could be alternatives. Sorry if anything i said was against the rules.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I just started taking 10 mg of baclofen twice a day and my sleep feels much more solid. It's available by prescription. I first read about baclofen here at PR and read that others had improved sleep. I'd say it's been a game-changer in just a few day's time.

Do a search for baclofen here and you'll see what I mean. I've tried herbal remedies and 5 to 9 mg of melatonin just to get me through one night of fractured sleep and now I'm just relying on 5mg of melatonin to get me to sleep. Oddly enough, when I take the baclofen, I don't feel sedated. It's just that when I sleep I can feel a distinct difference in how my body feels.

One poster here at PR said they had their best results when they took one dose of baclofen after dinner and one dose at bedtime, so that's what I'm doing and it feels about right.

Here's a study abstract:

http://www.ncbi.nlm.nih.gov/pubmed/7758556

The effects of the GABA agonist, baclofen, on sleep and breathing.

The gamma aminobutyric acid (GABA)-B agonist, baclofen, is a centrally-acting, anti-spasmodic agent and muscle relaxant used in spinal cord lesions, multiple sclerosis and other neurological disorders. In a previous pilot study of quadriplegic patients, 75% of whom were treated with baclofen, we found a high prevalence of sleep-disordered breathing. Because of the depressant effects of GABA on the central nervous system, we hypothesized that baclofen might aggravate sleep-disordered breathing in susceptible individuals by depressing central ventilatory drive, increasing upper airway obstruction and/or increasing the arousal threshold to apnoea. We therefore conducted a double-blind, placebo-controlled, cross-over study of baclofen 25 mg, administered before sleep in 10 snorers with mild sleep-disordered breathing (respiratory disturbance index < 30 events per sleep hour). Each subject underwent two standard polysomnographic assessments, one week apart. Total sleep time was significantly prolonged by baclofen (placebo 356 +/- 9.9 SEM min; baclofen 386 +/- 9.9 min). Both nonrapid eye movement(REM) and REM sleep duration were increased (nonREM: placebo 295 +/- 6.8 min; baclofen 311 +/- 8.9 min; REM: placebo 61 +/- 7.5 min; baclofen 76 +/- 9.0 min). Time spent awake after sleep onset was reduced after baclofen (placebo 71 +/- 10.3 min; baclofen 51 +/- 9.7 min). There was a slight reduction in mean overnight oxygen saturation (placebo 95.2 +/- 0.5%; baclofen 94.4 +/- 0.7%). The frequency of apnoeas plus hypopnoeas (respiratory disturbance index (RDI)) did not change significantly (placebo 9 +/- 1.8 events.h-1; baclofen 13 +/- 3.4 events.h-1).

Here's a link to the full text of the study:
http://erj.ersjournals.com/content/8/2/230.long
 
Last edited:

Countrygirl

Senior Member
Messages
5,425
Location
UK
I just started taking 10 mg of baclofen twice a day and my sleep feels much more solid. It's available by prescription. I first read about baclofen here at PR and read that others had improved sleep. I'd say it's been a game-changer in just a few day's time.

Do a search for baclofen here and you'll see what I mean. I've tried herbal remedies and 5 to 9 mg of melatonin just to get me through one night of fractured sleep and now I'm just relying on 5mg of melatonin to get me to sleep. Oddly enough, when I take the baclofen, I don't feel sedated. It's just that when I sleep I can feel a distinct difference in how my body feels.

One poster here at PR said they had their best results when they took one dose of baclofen after dinner and one dose at bedtime, so that's what I'm doing and it feels about right.

Here's a study abstract:

http://www.ncbi.nlm.nih.gov/pubmed/7758556

The effects of the GABA agonist, baclofen, on sleep and breathing.



Here's a link to the full text of the study:
http://erj.ersjournals.com/content/8/2/230.long


I just want to confirm that as a forty-year veteran of ME with weapon-grade insomnia that baclofen has proved to be a life-saver for me. After 30 years of severe/total insomnia, I had my first full night's sleep after taking baclofen for the first time. I do need to add though that although I have the usual alcohol intolerance that a glass of ginger wine which I can tolerate is the magic ingredient that exacerbates the effect of the baclofen. It doesn't seem to work without it. I take 30 mgs at a time.

One other consideration to bear in mind: the withdrawal symptoms if you try to reduce baclofen are terrible. I never want to experience that again and have now learnt that it is wise to only take baclofen twice a week to avoid becoming addicted to it. I take it when I especially want to be able to enjoy a particular event the following day.

There is one other discovery that I have made. I have a chronic and distressing level of neurological pain, similar to the chronic pain that occurs after shingles that affects my scalp and face as a result of a rare autoimmune disease. I have worked my way up to morphine with no benefit at all, yet the day after taking baclofen the pain is more bearable. Baclofen is certainly one of the most useful and effective meds that I have used since having ME.
 

perchance dreamer

Senior Member
Messages
1,688
I have to use sleep medicine and supplements, and every 3rd night I add 10 MG of Baclofen to my routine. It really helps my sleep quality.

Even though it works on Gaba-B, not Gaba-A, and theoretically should not cause benzo-like problems, I don't use it every night. I feel safer cycling it.
 
Messages
69
Location
USA
@perchance dreamer @renerdrat @Countrygirl @CFS_for_19_years

Thank God for folks like y'all -- the information above is invaluable. It saddens me that we all need to band together to solve health problems that the modern medical establishment is glaringly ill-equipped to manage. And, I actually like and respect the team of doctors that I'm currently working with -- but they unfortunately appear to be just as perplexed as I am.

That said, I do suspect that nervous system anomalies are contributing (if not causing) to my sleep disruption. I mentioned this in an earlier thread, which is that I notice a slight uptick in energy when I take xanax, whether it be during the day or at night, before bed time. I even tried a paired-down cocktail of xanax and metaxalone one evening. Not surprisingly, when I take muscle relaxers, my jaw does not feel as sore in the morning and I do not wake-up with clenched fists. I can't say that I feel any more awake though. Do you think that maybe a longer trial would be helpful? Also, what about just taking straight gaba, which I take religiously and do find it to have a calming affect.

So, I bought a (another) fitbit recently, and see that my rest is fitful. While this is not news to me, I am not aware of it all. In fact, I have been waking up less and less during the night. This may register some benefits down the line, because of a huge sleep dept. Finally, I started the Cowden Protocol for Lyme last week and think - fingers crossed - that it may be helping a bit.

Big thanks again for the suggestions and kind words.
 

A zombie

Senior Member
Messages
197
Hi, there, @cbmtl. I haven't been tested for Lyme. I could well have it, but just feel as though I deal with enough as it is. I have terrible reactions to ABX, too, and go out of my way to avoid them.

I think I've read that ABX treatment helps mainly for recently acquired Lyme infections. I grew up in MS and played outside and in the woods a lot. My mother or aunt would sometimes put my sister and me in the bathtub at night and pick off ticks. (Ewww! Sorry about that image.) However, I don't know if those ticks from my childhood carried Lyme.

My best friend lives in Philadelphia, and she said Lyme is very common there. She's always enjoyed good health, but got a Lyme infection last year. She took the ABX and responded well. That might be because she had a recent infection.

Our member who seems to know the most about alternative ways to treat Lyme is Wayne. @Wayne, could you direct cbmtl to some of your discussions on this subject? Thanks.

I've only had a Rife treatment once, and it was for fibro pain. It actually made it worse temporarily, so I didn't pursue it. I've had health improvements since then, so it could be I would react differently now. I think Wayne has done Rife, too.

Good luck and keep us posted.
oh dear , hun, you have lyme, especially with your history of pulling ticks off yourself. Most carry lyme. Also, Fibro is a symptom of another illness. Usually it's from lyme. You really should get proper testing.Yes lyme is harder to treat when you've had it of many years , but you still need to treat. Lyme can bring Alzheimers and parkinson if not treated. I Would get tested!