Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
My worst symptoms have always been in the gut and the peripheral nervous system. I always call it a tremor but really it's a *trembling* and I feel it most often when I'm lying down, relaxing, trying to sleep or sleeping.
It's been terrible at times, where I was absolutely just vibrating so hard you could see the bed shaking. It's A LOT BETTER ( don't know why) but I still feel it at the back of my neck and shoulders and in my knees sometimes.
Does anyone know what causes this? Is it the spirochetes eating my myelin? Are they swimming around in my nerves? Or is it a brain neurotoxin like quinolinic acid that just makes a person shake?
I'm trying to figure it out because it seems like if I knew what was causing it I could find something to make it stop.
Anybody know? Any theories?
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Look at you! 100 posts! Congratulations! And thanks for your contribution to Lyme Net.
I believe it was TuTu or maybe Keebler who pinned down the cause of the vibrating and shaking.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BAD Tincup! HA!
Actually, my theory is it is the toxins. Especially about the time you are clearing up from a herx reaction. Or while treating and feeling better, and toxins are sneaking up on you here and there.
It can be VERY annoying and often frightening when it happens. Sorry I don't have a more scientific answer for you, just observations and experience.
Good news is it hasn't killed me- though sometimes I was concerned it would. Bad news, I don't know how to make it stop. It does stop when it is good and ready, but I don't know of anything specific that can be done to make it stop.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Jordana
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posted
It just makes me depressed and reminds me how sick I am and of all the horrible weird symptoms I've had since a year ago. If I didn't have that one I would probably feel nearly normal at least some of the time.
And thaaaaaaat's-- 101!!!
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
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Jordana
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posted
Thanks Tincup. It HAS to stop or I'll go crazy before I'm ever better.
Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I had that too and it stopped after a good amount of treatment. Like you said, I only noticed it when lying down in bed at night. It was weird.
I don't know exactly what part of Lyme caused it or what part of the tx made it stop, but wanted to let you know you're not alone. Maybe it's that Lyme throws off the autonomic nervous system.
When I told my LLMD about it, he said it was very common with Lyme. I found it reassuring actually that he knew exactly what I was talking about.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
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posted
I believe you that it was reassuring. Every neurologist I've talked to has given me the famous " this person has grown two heads" look.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jordana,
I just recalled that when I was trying to take L-Glutamine (for stomach lining help) that it caused me to have that vibration in my gut feeling and even tremors (and beyond).
While this is not the question you have, some of the things here might help, be sure to see posts on the excitatory amino acids.
Topic: Best way to control limbic seizures / overactivity?
Actually, for anyone with hyper-stimulation of the nervous system. It's all in the same neighborhood.
Many LINKS - hope something here will (gently) ring some bells for you. Lots to consider so just take it one step at a time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also be sure not to sleep with your cell phone (no matter how long you might have been together, no matter how much you have shared). Don't even let it in the bedroom.
If you have a cell phone, try to limit its use and go for a land line when you can. When you are home, have it as far from you as possible, especially the charger. Out and about, keep it in a purse at least, not on your body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
What the docs tried to do was give me a lot of benzos. Valium, klonopin - and beta blockers, since these all calm CNS hyperactivity. None of it worked, so it isn't a GABA or adrenergic issue.
It helps to stay calm of course but it was just amazing to me that none of these heavy hitting pharmaceuticals did nothing at all for my nerve issues, vibrating, paresthesia.
I really wonder if anything can treat the symptoms of a nervous system infection without treating the infection.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto with the Rx for symptoms. All those (and more) also tried and none worked but most did bring some very rough & tumble side effects of their own.
You say that you "really wonder if anything can treat the symptoms of a nervous system infection without treating the infection."
So true that the infection(s) must be directly addressed for as long as it takes.
Still, yes, there are some things that can help ease some symptoms along the way. Much is what NOT to do, some is what to eat, how to move . . . still some supplements are very helpful.
I would not have survived any of this without magnesium, berberine or skullcap tincture, just for a few. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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posted
Thanks for all your help and comments Keebler:)
Posts: 2057 | From Florida | Registered: Feb 2015
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