Well, I'm off abx for some time because they're too hard on me and too many trips to ER.
I guess borrelia is going *nuts* inside me. The worst is my ankle twitching which doesn't let me sleep at all.
Does anyone know if there's something to help? I've tried magnesium in the past, but it made things worse. I don't know why??
Thanks for everything.
Posted by jennyflyer (Member # 12792) on :
Unfortunately, I had to turn to Ambien in order to get any sleep at all because of the tingling/tremors/pain.
I usually take 2.5 mg but some nights I need the entire pill, 5 mg.
I hated for it to come to that, I've always been against sleep aids, but it's better than not sleeping at all.
Posted by roro (Member # 13383) on :
i take ambien too. can't sleep without it. ya gotta sleep.
Posted by Monica922 (Member # 13496) on :
I have to take a valerian pill and 10 mg Ambien. Personally I keep telling them to just get a rhino dart...probably the only thing would work on me now.. Posted by sparkle7 (Member # 10397) on :
I recently heard that high doses of vit. C can cause twitching.
I was talking with another Lyme board member & he suggested that this may be the case.
Maybe try cutting things out systematically for about a week (each item) to see if anything you're taking is causing a reaction (?).
Posted by Virginia of Yore (Member # 3269) on :
To help with twitches, be sure you get plenty of magnesium (I take 400mg twice a day, total of 800) and also a good B vitamin complex, like a B-50. (Liquid B-12 drops held under the tongue 30 seconds before swallowing is more easily absorbed, but you still need the other B's, as they work synergistically.)
To sleep, I use two Benadryl and 3mg of Melatonin, and can get 6-7 hrs. sleep. None of the drugs like Ambien & Trazedone worked on me--I kept waking every few hours with them.
Posted by seibertneurolyme (Member # 6416) on :
Hubby has been having some sleep problems lately. Had been sleeping really well ever since we thought we got rid of the Babesia until things went downhill while treating Bartonella.
For hubby -- If it is a serotonin issue -- try either St John's Wort or 5HTP or l-tryptophan. If you have bad neuro symptoms then you should add resveratrol to keep the serotonin from being converted to the neurotoxin quinolinic acid.
Hubby used to wake up within an hour or so if he supplemented with 5HTP with tremors etc and sometimes nerve pain -- resveratrol stopped this problem.
When he first got sick over 6 years ago one alternative MD had hubby taking a 50 mg 5HTP capsule every couple of hours -- would calm his tremors for maybe an hour but then they came back worse than ever. This experiment only lasted a couple of days.
Can also take these supplements during the daytime to calm the nervous system.
If you take B vitamins (especially B6) they should help you produce more serotonin, but again you may need to add resveratrol.
The herbs that work best for hubby seem to be valerian or catnip or hops. I buy either a bottle of capsules or a non-alcohol tincture and rotate between the different herbs.
l-theanine may help. Seems to be more relaxing during the day than at night.
Vitamin C is supposed to boost the adrenal glands among other things. Very high doses or doses late at night might be detrimental to sleep.
Adrenal fatique is frequently an issue if you have trouble getting to sleep or can't go back to sleep. The body may be producing hormones at the wrong times. Hubby describes this as feling like his eyes are bugging out.
Recently put hubby on a new supplement for this problem. It is an herbal liquid gel capsule from Gaia Herbs called Stress Response. Herbs that are considered adaptogens work to build the adrenal glands.
Lately I have been giving hubby a small dose of IV push magnesium before bed -- 500 mg. He still takes the sublingual melatonin if he wakes up at night or has trouble getting to sleep.
Hubby had much better success with herbs and supplements than with sleeping pills. SSRI's can't replace a dwindling supply of serotonin -- need to take the raw ingredients to do that. Amino acid and neurotransmitter tests confirmed the difference between the drugs and supplements for hubby.
SAM-e may also be of benefit to calm the nervous system and help eliminate toxins.
Since starting on Levaquin IV glutathione stops hubby's tremors/myoclonus better than anything else. Have been using 1000 mg twice a day. Starting to get very expensive, but hopefully need will decrease once the germ load decreases.
Hope you can find something that helps.
Bea Seibert
Posted by Just Julie (Member # 1119) on :
I have had a few episodes where I had continuous, non-stop muscle twitching of an area (stomach, behind knee, hand, etc.) for weeks at a time. Most, if not all, of these episodes caused me to not be able to sleep. I was very distressed!
My twitching started in May 2000, and I started lyme treatment in Sept. 2000. I took abx combos for about 3-4 years continuously, and my twitching never subsided during the abx taking time.
When I stopped taking abx (2004) I noticed that gradually I had periods (weeks at a time) where my muscle twitching became unnoticable. Almost non-existent! I was so happy. But, slowly, they twitching came back. Not to the extent that it began with in 2000, but there are periods of time where either stress, or something else, can bring on the twitching to it's previous levels. I tried magnesium in a lot of forms (never injection or IV) but I too noticed that my twitching increased while taking the supps.
So, for those periods of time where I had a certain muscle twitch non-stop, enough to keep me from sleeping, my LLMD had me try Restoril, which is an old time sleeping med. I took 15 mg per night. It worked. I was very glad. The longest period of time that I had a muscle twitch was for 3 weeks, it was my stomach/abdominal muscle and I thought I would lose my mind. I had no idea if it would ever stop. At the end of 3 weeks, it just did---it stopped. I was amazed. It began on a vacation to Lake Tahoe, I was so disppointed thinking I would have my vacation trashed, with no sleep. But, the Restoril did it's job, and while I didn't sleep well, I did sleep.
I've not tried Ambien, mostly due to the side effects that keep being made known---my llmd said that nightmares were common, and god knows, having lyme is enough of a real time nightmare for now. (and then).
For other sleep problems, I use Ativan, which is a tranquilizer, but also listed for use for insomnia. 1 mg works for me. I asked my regular doc to prescribe it in 2mg form, and I split it in half--saves $$$. You want to take Ativan under the tongue, works the fastest that way. If you take it this way, you want to get brand, not generic, as generic does not work as well when taken under the tongue. This is per 2 different pharmacists, and I believe it!
Posted by 6t5frlane (Member # 8628) on :
Try looking up Benihn Fasiculation syndrome. Go to Aboutbfs.com ( I think ). Many people with severe muscle twitching. May or may Not be associated with Lyme...FYI
Posted by gwenb (Member # 7217) on :
I had severe muscle twitching and jerking that really interfered with my sleep. Taking magnesium to bowel tolerance eventually got rid of the twitching - it took about 6 months for it to go away completely.
gwen
Posted by Aniek (Member # 5374) on :
B-12 with folic acid. I take sublingual B-12 made by Perque. I put a drop of Folirinse, which is Folic Acid, on each tablet.
I've also heard calcium helps.
Posted by Vermont_Lymie (Member # 9780) on :
The last two nights I used an antihistamine to help me sleep -- and it did. The side benefit is the antihistamine also took care of my nausea the first night too.
Calcium and magnesium are helpful. Only when absolutely necessary (because NSAIDS are not good for your stomach on a regular basis), one advil is like a sleeping pill for me, it always works.
Posted by sparkle7 (Member # 10397) on :
I'm really not into taking pharmaceuticals but Ambien was helpful.
I just take the smallest does possible & work up from there if I need more.
I can take 1/2 of a 5mg pill & it helps when needed.
It seems that I always go back to having insomnia - even when I think I have my sleep balance straightened out.
I think the Lyme effects the brain chemistry that effects sleep - among other things.
I was always into taking herbs & supplements but it is a big experiment - especially if we take mega doses.
We all react differently & there aren't alot of long term studies of the effects of taking mega doses of vitamins.
If we take a bunch of different supplements & drugs, it's hard to tell which things are working & which aren't or which thing is causing an adverse reaction.
PS - Stress can cause big problems, too.
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