Sleep issues

hi Todom

welcome to the forum

sleep issues are one of the most common symptoms of lyme as associated infections

many people here struggle with it

ultimately its driven by inflammation in the brain - especially by increased levels of IL-6

often its exacerbated by lifestyle changes as a result of lyme- things like offset days, less daylight exposure early in the day, less physical activity in the day, less social contact early in the day etc - which are all factors that can all add to low cortisol in the am, less melatonin at night and add to dysregulated sleep.

its very hard to fully correct if lyme is still active
a combination of lifestyle changes/ sleep hygiene, supplements etc
most people find a way to get by while they get through treatment and it should then resolve or at least dramatically improve

Welcome to the forum!

Unfortunately, there's no test that can tell you that you are in remission from Lyme and its common co-infections, so we have to judge by symptom resolution. It's great that you are looking for ways to keep improving! If your doctor is a Lyme specialist, then they won't regard you as in remission while you're still having symptoms.

You mentioned heart spasms in the middle of the night. Can you describe more about this? When you say a cardiologist checked you out, did that include a 24-hour holter monitor to track what your hears is doing when you feel the spasms? If not, then I would request a holter monitor to record what's happening. It's probably nothing big, but I know anything you feel in your chest in the middle of the night is unsettling!

A few possibilities that come to mind to explain the spasm sensations:
- Premature ventricular contractions - feeling hard thumps occasionally from your heart, which are much easier to feel lying down at night; harmless as long as they stay below 3% of beats.
- Atrial fibrillation - your heart beats very fast for a short time, and can feel like a fluttering sensation; can be harmful if frequent and increase chance of stroke. Treatable.
- Esophageal spasms - common at night, especially if you have GERD or LPR.
- Diaphragm spasms - can wake you up, can make you gasp or feel like anxiety; often correctable with physical therapy or other attention to ergonomics, deep breathing exercises, and/or stress reduction.
- Costochondritis - painful inflammation in the cartilage of the ribcage, can involve subluxated (slightly dislocated) ribs.

If you feel like the trouble staying asleep is not related to the heart-area spasms, then there are lots of things to try: melatonin, CBD or an indica cannabis strain, blue light blocking glasses (or no screens) after dark, full-spectrum light lamp or natural sunlight early in the day, exercise early in the day, consistent sleep-wake schedule, white noise, cool temperature bedroom, sleeping alone, change in mattress or pillow ergonomics, completely block out light in bedroom, meditation or breathing exercises to get back to sleep, no eating or drinking within a few hours of bedtime, no caffeine or sugar, etc.

Hope you get to the bottom of it soon!

Welcome to the club. I’m not sure what SOT treatment is. I had heard of it probably something I should Google.

I have a current insomnia thread here. Don’t know if you read it, some of it might help you.

I was improving last week until last night. I came home from grocery shopping relaxed, and the couch for what was only going to be 10 minutes before I know what I fell asleep and woke up at 2 AM! Well, try falling asleep back in your bed after that happens, we’ve all done something similar, and usually end up awake the rest of the night. But two years ago I would’ve fallen back asleep in bed. That’s how good I slept for a while.

Yeah it’s a bummer when your sleep changes.

Lots of good dialog started already.

One thing I wanted to add separately from other advice - for chest pain it can often be easy to overlook costochondritis. Which is inflammation of the joint/connection from ribs to sternum. Often presents on the left side. Common in fibromyalgia (which is a debatable diagnosis.. and often more overlaps with this forum)

Not that the heart can’t be involved but no one mentioned this and it’s mainly my issue when discomfort is present.

Oh and always good to make sure a new poster doesn’t have any major water damage / mold issues in living / working environments. Mold never helps recovery.

Glad SOT was helpful for you. I chose Lymestop after comparing both Facebook groups. SOT had a rather high rate of non responders and people saying they’re worse because of it from my perspective.

SOT is actually a reverse messenger RNA.

It’s made in Greece by a company there that match it to genetics found to the microbe in your blood.

The idea is the RNA finds only the appropriate microbe and essentially stops it from being able to reproduce. So when the life cycle ends they just die off..

I respectfully doubt a 98% success rate is true. Lots of questions to ask there. Not looking to be negative but just to keep things in perspective.

Post Edited (loski01) : 2/17/2024 11:38:19 AM (GMT-8)

I’ve heard of a local who used it, but I didn’t ask for details.

Sounds interesting and looks great on the surface.

I first thought it was just something to take. I didn’t know they actually custom make it to match /counter effect whatever it is they find in your blood? Did I understand that correctly?

I don’t recall it ever having its own post here. Only seeing it a few times on other posts.

Hi Todom, I have sleep issues and these are the things that have helped me

- High dose melatonin powder combined with a fat like coconut oil or phospholipids

- Valerian herbal tincture drops by global healing

- Magnesium thereonate as MagMind by jarrow

- Herbal tea containing lime flowers, chamomile, vervain, passionflower, skullcap, rose Patels, wood betony, lavender which I also mix with tulsi holy basil tea

- Block blue light glasses at night

- Block blue light bulbs at night

- Eye mask to block out light

- Ear plugs to block out noise

- Weighted blanket

- Lumie light first thing in the AM

- No screens before bed

- No food before bed

- Grounding / earthing bed sheet

- Fremedica Wave 1 frequency device which combines frequencies for detox, lyme and anxiety

- Mestinoin medication for CFS and POTS but seems to have helped with sleep and HRV

I also recommend getting a sleep tracking device like an OURA ring so you can see where your sleep issues are - e.g. deep sleep, REM sleep, light sleep, time spent awake, restfulness, time taken to fall asleep, oxygen saturation. For example I didn't realise I had very poor deep sleep until I purchased an OURA ring

Where do you do SOT? I have looked into it here in the UK but it's not available here. When I last checked the closest place was Poland

Post Edited (emma blonde voyage) : 2/18/2024 5:53:04 AM (GMT-8)

Todom711- I re-read this. Do you have any past issues with thyroid levels? That will also cause insomnia.

Those of us with years of thyroid history know where our "sweet spot" is in the ranges,... despite some Drs telling us otherwise. Im re-adjusting my level right now and improving my sleep.

The longer someone has thyroid issues, the less TSH matters and the more T3 and T4 matter.

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loski01 - thanks for the SOT explanation.

As this forums visitors have decreased, the latest new treatments are less likely to be mentioned here. Eight years ago we would get prob 8 new posts a day, (in addition to continuation of other already active posts), very busy then. Lots of latest info back then, no need to go to other web places back then.

That is very interesting. It’s just very odd that there is not a clear definitive solution to treat this illness.