[ 08-30-2010, 06:36 PM: Message edited by: TN Kim ]
Posted by Lymetoo (Member # 743) on :
They must drive you nuts! Hard to fall asleep, I'm sure!
um... I couldn't see anything... what am I doing wrong? Figured out how to enlarge (amazing I figured that out!!) .. but then...
Posted by TN Kim (Member # 26729) on :
I'm confused ... lol ... so once you enlarged it you could see? Did you see the red boxes I added
to point out where each twitch would be? The first twitch is about .33 seconds into the video.
Posted by Lymetoo (Member # 743) on :
No, no boxes.. let me go again... maybe I didn't wait long enough. Headed back!
Posted by Lymetoo (Member # 743) on :
(OH me... I am SO impatient! didn't wait long enough!!)
YES, I SAW them!!! OMG! How DO you ever get to sleep??
Posted by TN Kim (Member # 26729) on :
It's annoying for sure! Did you see the red boxes? Sometimes when I go they are not there ...
you have to make sure the red "speakout" icon for annotations is clicked.
Posted by Lymetoo (Member # 743) on :
They were there... I would have no idea how to activate them! Posted by TN Kim (Member # 26729) on :
Ok, thanks! I don't know why they don't just make them stay "on" if you go to the trouble of making them! Posted by opus2828 (Member # 15407) on :
Wow. I get twitching on my face sometimes and it's really annoying. This looks pretty annoying too. Has it gotten any better with treatment?
Posted by TN Kim (Member # 26729) on :
Opus ... no, not yet! I have had this since pretty much the beginning of my onset of illness.
Just started Rifampin a few days ago .. maybe that will help with this?
Posted by INEBG (Member # 27690) on :
Thanks for sharing that. They look like hiccups. I've had that in my bladder in the past. Does that happen if you are moving around, or only when you are relaxed. Question - it may be shadows, but on the video it looks like you have the same discoloration, blue veins, and "bruising" from knee to ankle along the shin as I do - do you? Do you know what it is?
Posted by TN Kim (Member # 26729) on :
INEBG, no I don't have bruising like you described, I guess it was a shadow.
I get twitches in various places ... just had a couple right now ... while sitting at my computer.
I don't know if they are "worse" when lying down or just easier to notice???
Posted by echorox (Member # 11969) on :
yep, I get them also mine are probably not as frequent as the person on the video I get them when resting and its an involuntary twitch or more like an all- over bodily jolt lasting a few seconds..bizzare stuff
Posted by METALLlC BLUE (Member # 6628) on :
I had a lot of symptoms like this. My doctor told me "You're making it twitch so you can get attention."
Really? Seriously? That's all I could think.
Posted by Keebler (Member # 12673) on :
- Be sure to tell your LLMD. As frightening as this is, it is really very common with lyme. Still, your LLMD should know and you both should reassess your support supplements and nutritional intake.
I also had lots of similar twitches (and much more pronounced ones that would even throw me off the bed).
If this is happening when you are sitting, be sure to assess your ergonomics. Feldenkrais is good for that.
Massage and Magnesium were the very best help. My guess is that your magnesium level is very low. Calcium and other minerals & electrolytes, too.
Yoga stretches can be helpful but most helpful would be full body cranial-sacral therapy with someone trained in the UPLEDGER method (Google for those near you trained in this style).
Restorative Yoga - also very important
When these twitches start, it is important to reposition your body. Go to the source - where the muscles that is twitches "starts" and gently massage and stretch that. The contraction should subside.
What is your current dose - and how often -- for magnesium? This appears classic magnesium deficiency which is very common with lyme.
JOHN F. BARNES, P.T. is one of the top experts on myofascial release. After a surgery, this can help reduce - or soften - adhesions that typically occur.
Licensed Massage Therapists (LMT) also are very helpful. You can search for their licensing organization in your state and contact your local lyme support groups for those LMTs who are good with lyme patients.
* Magnesium: The Underappreciated Mineral of Life Part II - -----------
All this on magnesium is partly because it has helped me so much. However, be sure to ask your doctor. Most lyme patients are very low in magnesium as the infections seem to do that.
Some are concerned that the magnesium can "feed" infection, however, if the body is severely depleted the body must be replenished as magnesium is a necessary mineral for survival.
Taking magnesium with B-6 helps it get into our cells better. And B-6 is a calming vitamin, too. -
[ 09-02-2010, 01:18 PM: Message edited by: Keebler ]
Posted by TN Kim (Member # 26729) on :
echorox ... the person in the video is ME ... ha ha!
Thank you all for your input! I did tell my LLMD about these just last week at my visit. That is
when he added the Rifampin and also Coenzyme B Complex, DHEA, and something called MaxGxL which I
ordered and am waiting to arrive by mail. He's never said anything about Magnesium deficiency ...
don't know if that was one of the many things checked in my blood panels or not. I do, however,
take Epsom Salt baths to try and help with that. Oh, and I had to order the Coenzyme B Complex online
as our local stores including GNC did not carry it! So .. maybe that will help with twitches once
I am able to start it? EDIT: Keebler, I will look over your links! TY!
Posted by Keebler (Member # 12673) on :
- Epson salts (warm, not hot) bath can help but it will not come close to supplying all the magnesium you need throughout the day. Not even close. I needed much more, 3 or 4 times a day.
Source Naturals has a good magnesium blend. NaturalCalm is nice, too. I take 1,000 - 2,000 mg a day to keep the myoclonus down.
WHICH MaxGXL are you getting? There are several types. This could be promising.
Ok, I'll try to remember and ask my LLMD specifically about Magnesium!
It is just called MaxGxL and he said to take the full dose. It was ordered through his office so I
didn't actually get to see it. I know it's over $80.00 per month though, so I sure HOPE it's good!!!
EDIT: Oh, and my Glutathione levels were very low so I know this is supposed to help that!
Posted by arkiehinny (Member # 26546) on :
I clearly saw the twitches in the red boxes once I enlarged the picture to full screen. It must be really annoying!
I'm fortunate to have had only mild twitching a couple of times in my lower lip. Then once my left elbow/arm (the one that hurts all the time) gave ma little twitching number. Nothing since then, though.
Posted by 17yrsAndCouting (Member # 27961) on :
Hello everyone, I have a new handle but I am not new to these boards although I have not been on them in almost 3 years. Since it's been so long I could not remember my old name so I created a new one.. I wanted to comment on this post.. I too have horrible twitches and spasms all over my body.. To the point at night when trying to sleep they would lift me off the mattress and one night we thought I snapped my neck.
Since I have not had an LLMD in 8 yrs my MD put me on Ativan 1 mg three times a day and it's pretty much stopped the spasms although I still can not fall asleep on my side.. When I try too I still twitch but only when laying on my side.. Still not sure why this is..
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