What to do for sleep?

Hi everyone:

After mostly lurking here occasionally, I've decided to ask for help a little more.

My sleep is atrocious. My sleep MD told me after 3 or 4 sleep studies mine was one of the worst patterns he ever saw in 30 years as a sleep specialist (Yay!)

I stack melatonin, low dosages of multiple tranquilizer drugs, and Mirtazapine. Sometimes I add in small dosages of Imovane (Zopiclone).
My sleep was somewhat better for a while, but now I'm back to getting 4 hours many nights, and sometimes 5. It's full of apnea (couldn't tolerate the CPAP machine) and intermittently, those brutal Lyme/tic-borne nightmares. Those of you who have those know what I'm talking about.

This sleep disorder has gotten better and worse, but has been with me for roughly 23 years.
Tic-borne treatments I've tried:
- Doxy,
- Bicillin
- Methylene Blue
- Azithromycin
and a few other killers appear to have changed nothing.

I'm more of a natural health kind of guy and eat a very careful diet. I walk as often as I can, but I'm limited now due to the effects of the disease.

I've tried practically every herbal and natural treatment you can think of, including
- Buhner protocol
- Cowden protocol
- Beyond Balance formulations
- Ozone (used to help a lot)
- mild exercise
- meditation
- Bicom and energy machines

Nothing seems to help. So now, I'm wondering about Cannabis. My naturopath doesn't want me going near it because she's concerned about immune-suppressant properties.

Can anyone suggest anything that helps a lot of Lymies sleep other than more drugs?

I use THC/CDB tincture before bed. I put off trying it I dont know why I smoked a lot of cannabis in my youth, but for some reason I stopped and didnt want to try it again. It works wonders for my sleep I used to have a lot of interruptions when I sleep. 3 hours straight was good. Now I find myself going 6 hours straight no wakeups. I dont take a lot about 3-4mg THC per night. I doubt thats enough to mess with the immune system. If it does its probably offset my the better sleep.

How does your sleep routine look like?
Improving your sleep hygiene won't solve the problem, but should lead to better sleep than you have now.

Morning. Some mindfulness like yoga or meditation to start the day. Then some sunlight to set the circadian rhythm.
Day. Avoid caffeine after lunch.
Night. No food 3 hours before bedtime. Limit screens before bedtime, about 1 hour should be good but more could be needed for some.
Make sure your bedroom is good with no lights, not too warm, etc.
Try to aim for going up at the same time in the morning.

There are a lot more things you can try, but it's good to fix the basics of a good sleep routine first.

When my nervous system is calm, I sleep better, so there are 2 things I strongly recommend experimenting with. Grounding and cold therapy. So basically walk barefoot outside and finish your showers at a colder temperature. I finish mine on the coldest but it takes some time to gradually get used to colder water.

Before bed, I take magnesium, melatonin, L-theanine, and lemon balm.
When I don’t experience high stress I generally sleep 8-9 hours.

Post Edited (Deep_sleep) : 6/22/2021 2:25:19 AM (GMT-6)

Yes, all that falls under the "sleep hygiene" category. It has made basically zero difference so far. I take Natural Calm twice a day. Anxiety isn't really a thing for me any more (though it was for decades in the past).

Parasites, well....I do have Babesia, and most probably some intestinal parasites, but I haven't take anything in the way of drugs for it lately. Years ago, I took Biltricide and Ivermectin and that over-the-counter one whose name escapes me right now. I probably should have taken Malarone when I was in better health. I'm not sure my body can tolerate the inflammation from that kind of die-off any more. My inflammation is unbelievable.

Intermittent rounds of herbal anti-parasitics don't seem to be doing anything, AFAICT.

I do have a Rx for Malarone, and I may take it if nothing else looks promising for a while. I just don't want to make myself worse.

I'm in Canada, so Cannabis legality isn't a problem here.

Post Edited (Hogwild) : 6/22/2021 10:39:26 AM (GMT-6)

I'll look into that thread, thanks.

Does lemon balm just work on GABA receptors? I ask because I've been on so many GABA stimulators for so long, I think my receptors are shot. That's a known syndrome, in and around the tic-borne infections.
I love the calm feeling you get from L-Theanine, however I can't take in anywhere near bedtime. It makes my nightmares twice as frightening and twice as intense, which just screws up my sleep more.

Just in case you didn’t look into this, have you tried cpap machines in recent years? I got one near the beginning of my illness (over a decade ago) and didn’t really tolerate it then recently got a new one since I used my old one sporadically I to cope with air pressure changes and the hose completely cracked.

Anyways I was surprised to find they actually made advances where they have this auto adjust thing now where you don’t feel,like you’re fighting the machine as much and they’re much quieter which I didn’t realize how much nicer it is till I got it. So I tolerate it slightly better but still not completely now. My issues is I keep coughing since my lungs are super sensitive. Taping a carbon sheet over the intake helped some and changing my true hepa carbon filter to the chunky carbon kind instead of black mesh sheets helped too.

Bailey:

Yes, I tried a CPAP machine last year. This was my second attempt, and honestly,
I have no idea how anyone with serious Lyme can tolerate these things. It was a
fairly new model. IT also made me very happy that the device uploaded all my
(atrocious) sleep data to the manufacturer without anyone warning me. /s

Lymegirly:
I bought some CBD oil and some CBD/THC oil (low THC). I'm experimenting with
both lately.

I found something that's working extremely well, a supplement I've know about for
years called Cortisol Manager. But unfortunately, I'm feeling more ill during the day
when I take it. Probably because it affects my already low adrenals.
For those without weak adrenals, I can't recommend it enough. I know of a number
of Lymies who got their sleep back on track with Cortisol Manager.

Phosphatidylserine? Not a chance. Every time I try it, I suffer from violent anxiety
and panic attacks.

Passionflower makes me very happy/relaxed but doesn't change my sleep.
Valerian is one of the only herbal sedatives I haven't tried (other than Kava Kava)
in a long time.

Thanks everyone. I'll post back with more results soon.

Post Edited (Hogwild) : 7/2/2021 8:10:36 PM (GMT-6)

Dmitry:

Thanks but that won't work for me either. I'm nowhere near a sauna, and I can't
eat almost all carbs due to very severe GI problems.

But I appreciate the idea, folks. Keep 'em coming.

I have Babesiosis and sleep 5 hours every night. If I want to sleep more, I can but it takes quite an effort. Lithium orotate 10mg is required and a dose of copper is often needed. Not eating certain foods is required. The best sleep comes during a 24 hour fast so that told me that what I was eating was causing an immune response. I wake up hot or with an elevated temperature. I do not have answers yet as to why. I am in the process of determining which foods increase my GI permeability to the point that the inflammation becomes more severe. I know meat does it, now working though the nightshades, whole grains, other foods that I eat a lot of to see what is an issue.

Iodine was something that I had to take to get more sleep. There was actually quite a long list of things that it took, just mentioning the things I can think of off the top of my head.