Jordana
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posted
My most upsetting symptom these days ( and this has gone on a while) is shaking, and weakness.
Of course this is not weakness the neurologist will acknowledge, it's more things like fine trembling, muscle flickering when I sit up for a long time, arms kind of shaky when I hold them over my head, and trembling feelings in my legs when I hold them in certain positions.
I got an emg which showed my leg nerves were "irritated" but the neuro said there was no sign of demyelination ( like how can they tell anyway? )
I really believe that my confused immune system is trying to kill these little bastards and targeting myelin instead because that's what it really feels like -- unstable nerves. Like sometimes just using my muscles for a brief period will stir up a kind of irritation, twitchy, shaky feeling.
I know that knocking down the infection will stop the autoimmune process but in the meantime it freaks me out and makes me afraid to move.
I've tried stuff like xanax and klonopin and this makes me less *concerned* about these sensations but it doesn't change them at all.
So the other day I read that LITHIUM OROTATE might be helpful with this problem since it helps with MS. I bought some but I'm not sure if I should try it, especially with the mino. I'm actually dying to try it if it helps.
Anyone have any experiences with nerve sensations and muscle shakiness and lithium orotate?
I'm also taking ashwagandha for nerve support.
Any other suggestions?
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- Often, quiet rest helps the most. -
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Jordana
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posted
I do that all day:). I thought my back, discs and nerve endings all needed to heal so I just lie here a lot. I'd like to move a little more.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
While you lay there you may consider trying some essential oils.
You can add several drops to a cloth or towel to put around your neck. Can also make a massage oil with essential oils to apply to base of neck or affected areas. Alternatively add a few drops to a diffuser.
Marjoram essential oil has antispasmodic properties, reduces pain and calms the nervous system among other things.
Lemongrass is a great nerve and overall health tonic. It's used to treat a number of nerve related conditions including tremors, shaking hands, vertigo and even Parkinson's and MS. It's soothing and calming for the mind, inflammation and relieves tension.
Thyme, Rose, Eucalyptus, Ravinsara, Fennel & Bergamot have all been shown in studies to reduce inflammation (COX-2 expression in cells) in a manner similar to reseveratrol. The chemical 'carvacrol' seems to be to be primarily responsible for this suppressive activity. In studies Thyme oil reduced COX-2 levels by almost 75%.
Lavender & also Lavandin have been shown to reduce cortisol levels and calm the sympathetic nervous system among other benefits.
Clary Sage, Vetiver and Roman Chamomile also have antispasmodic properties, are helpful in treating muscle spasms and calming nerves.
All the best to you and hope you find some relief.
Posts: 114 | From California | Registered: Jan 2016
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bluelyme
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Member # 47170
posted
Magnisium cream ...doc gave me baclofan but havent tried as dizzyness is not something i want more of...
herbalist said chinese cats claw is what he gives Parkinsons patients...trying some tomarrow...
the bugs maybe hiding from abx in nerves and low blood flow areas ...neem may slow flagella. Tinidazole? Probably wont help nerves . But high fat diet..lions mane ...might
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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dbpei
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posted
I recently added lithium orotate back in to my med regimen. It can help in so many ways. I take 5 mg with each meal.
Jordana
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Member # 45305
posted
Thanks so much for all suggestions.
Funny thing about Lion's Mane.
Way back when that was one of the first things I tried. This was back when I was just shaking and twitching and bouncing; I had an upper eyelid twitch that would jerk incessantly all day long, and the nerves and muscles in my neck would just start to bubble all the way up to the top of the back of my head the minute I laid my head down.
But a lot of the things that were suggested for nerves just made it all a lot worse. Lion's Mane made me feel like I had stepped on a live wire, thus making me more terrified than I already was.
The same thing happened when i tried to take creatine and ALSO, weirdly, liposomal glutathione.
A lot of this has calmed down a fair amount. But I really wonder what it was about those things that made it worse. Maybe then I could figure out what exactly *happened. *
Neem slows flagella...good to know...
Posts: 2057 | From Florida | Registered: Feb 2015
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Jordana >>>>>,
Have you tried methylcobalamin B-12?, I use it daily now. It is really important for our nerve and Myelin Sheath health.
It would be one to research, for me, i take it,because of Myoclonus, quaky feeling, jerking and so on.
I have found Andrographis to be of help, in general but it can be too strong,or cause sensitivity in many folk.
There are some good links on LymeNet for the methyl' B-12, I hope you find something to ease things.
Prayers and extra hugs going up and out to you. These symptomologies are no fun for certain.
Lord please help Jordana's symptoms to ease, and the pain to lessen. Let her be able get healing rest and sleep. In Jesus Name Amen!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Jordana
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posted
Thank you Silverwolf.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
"I had an upper eyelid twitch that would jerk incessantly all day long" -> classic symptom of B12 deficiency
Wondering if your Lion's Mane response was from release of the spirochetes into your blood stream causing an overload for your body?
Studies have shown that Lion's Mane contains compounds that can pass through the blood brain barrier & can release the spirochetes into the blood stream.
Since the spirochetes are better adapted to living & moving in tissue than in blood, it's thought the immune stimulators in Lion's Mane can also help perge the spirochetes as well as heal damage that's been done to nerve/brain tissue. This is also why Lion's Mane is usually used in conjunction with other Lyme fighting herbs.
Have you been tested / do you have MTHFR genetic mutation?
Wondering if your neuroborreliosis could be wrapped up with symptoms of compromised methylation like it was for me.
I also didn't respond well to liposomal glutathione and it was related to MTHFR issues. Apparently having a 'sulfide pathway blockage' was affecting the glutathione absorption. Going off foods containing sulfides for a few days and supplementing with B1 (Thiamin) & Molybdenum worked. I started back low & slow with better results.
As a side note I also learned that to support adequate glutathione levels magnesium, selenium, B2 (as active Riboflavin) & T4 thyroid hormone are all needed. So if any of these are deficient (as is the case with a lot chronic immune conditions), it will affect glutathione formation, absorption and/or repair.
Posts: 114 | From California | Registered: Jan 2016
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Jordana
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Wow, I didn't know that about Lion's Mane -- that really helps a lot, thank you . That was an insanely scary time; I was so confused and had no idea what was happening to me.
I was doing so much supplementing I can barely remember everything I took but I just kept getting worse and worse. " Vitamin C to bowel tolerance"...made me think I should have been hospitalized.
This was all because I kept feeling more and more odd, and very scared, and the neurologist I saw kept telling me I had "post-viral syndrome."
Since I wasn't doing anything to kill them I probably just stirred them up and made them find other places to hide. Hopefully lots of them found my gallbladder and left when I got it taken out.
I definitely have MTHFR -- homozygous at the 129 whatever pathway, but normal on the 677. I've been taking methyl guard but I actually have to be careful of b12 because the last time I got it checked a couple months ago it was WAY too high. I was over supplementing so I had to stop.
I am also a "dreaded" detoxer.
I keep going back and forth on the thyroid thing. When I started to feel weird a couple years ago all the doctors wanted this to be my problem but i kept testing normal through biopsies and so forth.
Thanks so much for your answer, these explanations help so much coming to terms with what happened to me.
Posts: 2057 | From Florida | Registered: Feb 2015
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I don't know if this is something you've already tried, but Cats Claw helped me. I wasn't taking anything to help myself and was suffering from depersonalization - that's where you feel kind of like a zombie and don't even think of trying to get help or help yourself. It was also hard for me to stand up because every time
I did, I felt (this is hard to explain) as though I had no first chakra. I felt as though there was just a big empty hole there and I couldn't stand up for very long and had to lie back down. When I did stand, I couldn't stand still but had to keep walking so that I didn't feel jittery all over.
I finally started taking Cats Claw and within a couple of weeks that feeling was gone. But, I think you said you're taking Mino
And I didn't know whether or not you can take both.
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Jordana
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posted
I decided to add cat's claw to the potion a couple of days ago. I am back down to a 50mg dose of mino and even though I understand the rationale of going slowly I don't know if that dose is even bacteriostatic.
Definitely feeling odd on the cat's claw. But Buhner says that you can take any of his herbs with abx.
I think I know the feeling you're talking about. It's not exactly vertigo, more a feeling like your head might float off your neck.
Oh...the weirdness of Lyme...
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Yes, it's definitely weird. It's a surreal feeling. Even bumping into doors, etc. When I was on Mino, I was taking it every other day. I think if I were taking Cats Claw too, I might take Cats Claw on the off days. It's probably best to discuss with a
doctor if you're feeling odd, because, I always found Cats Claw to be very gentle and it never made me feel strange at all. In fact when my brain fog and neuro problems started disappearing, I was surprised that it had helped at all. But everyone's system is unique.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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Pocono Lyme
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For me, those symptoms are related to adrenal fatigue/exhaustion. I get them now if I don't take enough Cortef.
A good bio-identical hormone replacement doctor can help with this.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Jordana
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posted
I have an adrenal adenoma, but I had all my levels checked and they're normal. I don't think that means my adrenals are normal but there's no sign of fatigue yet.
I try to eat a lot of salt and it doesn't seem to touch this. I haven't found anything yet that does.
Posts: 2057 | From Florida | Registered: Feb 2015
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Pocono Lyme
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Member # 5939
posted
Just a couple of thoughts here. Testosterone? My muscles got stronger after starting this.
Also I just read that ALC (acetyl-L-carnitine can regenerate nerves. I have no experience with it.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Lord please help Jordana's symptoms to ease, and the pain to lessen. Let her be able get healing rest and sleep. In Jesus Name Amen!![[Smile]](smile.gif)
Thank you Silverwolf.
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