This is one of my lasting symptoms that is just hanging on with a death grip.
The best way to describe it is like a restless leg syndrome in my entire body. Sometimes it starts to make my bones hurt in a really deep profound way.
LLMD not treating for a co. Does this sound like a co. symptom?? TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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Keebler
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posted
- What is your magnesium dosage? Type? Magnesium often helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
Yup to Keebs. Sounds like a mineral shortage to me.
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posted
Thanks for the feedback. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may need 1,000 to 2,000 mgs. of magnesium a day while fighting lyme. Go up to bowel tolerance and then back down slightly from that.
You might also consider transdermal, shots or IV.
Calcium is also important to have in balance. As massman says, other minerals, too.
Not a mineral but an amino acid: TAURINE is also very helpful to help calm all kinds of spasms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Mg glycinate is well tolerated and better for bowels.
But you probably talk about internal vibrations, there is a lot when you look up old posts. If you have internal vibrations there is another bug which can cause it . cpnhelp.org gives you information.
Posts: 1834 | From US | Registered: Oct 2008
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posted
my bones hurt SO deeply sometimes and when they do NOTHING helps! i started magnesium a few weeks ago and have been working my way up but it hasn't been helping. i am sorry your entire body feels this way lucky for me its just my legs!
Posts: 220 | From Kansas | Registered: Mar 2010
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glm1111
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posted
I know this is going to sound a little strange, but I read that placing a bar of soap at the foot of the bed under the sheets stops the restless legs and leg cramps.
I have never tried it, but many report success. Google restless leg syndrome + bar of soap. It's worth a try.,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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tickled1
Frequent Contributor (1K+ posts)
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posted
Yes! The RLS feeling in the whole body has been a huge problem for me as well. I told one doctor about it years ago before being dx and he laughed at me!
Anyway, I had it so bad that I would end up sitting on the floor rocking back and forth just to try and cope with the sensations in my body.
One thing that I found that helped alleviate the feeling and helped me go back to sleep at night is using my electric vibrating massager on my neck and back. It's the kind that has two knobby like things that go on either side of the spine kind of like a shiatsu massager but it vibrates instead of a kneading action.
If you have a massager like that I would give it a try. It worked wonders for me. And if it happened during the day I would try to take a brisk walk if able. That helped as well.
Posts: 2541 | From Northeast | Registered: Jan 2008
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karenl
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posted
Laura, you need to consider cpn infection, chlamydia is inflaming the blood vessels and these people have vibrations.cpnhelp.org.
For me minocycline helped.
Posts: 1834 | From US | Registered: Oct 2008
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map1131
Frequent Contributor (5K+ posts)
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posted
I had total body restless leg for several years until someone on this site recommended Pycnogenol(supp) in heavier dosages for 4-6 weeks and it's never returned.
I did a search to see how long ago I used Pycnogenol and it's been two years. So it was good for me.
Seems like I did so many per day based on body weight?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Seems like this is a pretty common thing. Mine goes in cycles and I was RLS free for 2 weeks and thought, "Wow its gone!!!", only for it to come back.
I am going to try some of the ideas and seem if any of them help. Thanks again. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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daystar1952
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posted
I would often get restless legs and then my whole body would feel weird(agitated or antsy). This would happen in the evening when reclining. I Also had tendonitis in my heels and pain in my knees so I put venex ointment on those areas.
This is cream with bee venom and another ingredient. I would feel a mild pleasant tingling go up my body....and that was the end of the restless legs for a couple months. Now, whenever I feel the restless legs coming on (rarely), I apply the bee venom cream on the backs of my ankles. Of course people with severe bee allergies need to be careful
Posts: 1176 | Registered: Oct 2002
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posted
I am glad I caught this thread, because I just recently started feeling it whole body, too. I thought if I told my LLMD she might think I finally flipped.
I haven't had RLS for yrs., it was a real relief when it left.
As far as vibrations, I had them in my legs until I got a deep massage in my glutes. My glutes were painful at the time too, and the massaged killed, but it was so nice to have the vibrations gone.
I take mag and get shots of it every 2.5 wks. I just got a shot this week, but still feel the RLS. The mag does help my pain level, though.
posted
So...is this common in both lyme and co-infections?
I see my LLMD next week and need to bring up the topic of co-nfections with a possible course of tx. Just pulsing Biaxin right now.
I am wondering if this feeling is the result of over load of toxins from die off? Or is this an indication of the active lyme?
The whole thing just confuses me sometimes..Think Iam getting better then get hit with whole body RLS. It is really the worst feeling.
Exercising does help but if/when I over do it I suffer later that day/night into the next few days. That is why I am wondering about die off and this feeling. Also about the connection between lactic acid build up from running and RLS.
Venex ointment - never heard of it but will research it.
I rarely take Pharm.'s but was wondering if anyone has had relief with muscle relaxers such as Soma or Skelaxin? I just hate taking that stuff but if it brings relief...
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
Lactic acid... This might be a really stupid question, but if lactic acid could cause this could using a lactic acid lotion (recommended by podiatrist) do it? I just started using it about a month ago and I didn't have the RLS then.
liz
PS The vibrations are back.
Posts: 472 | From NJ | Registered: May 2009
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posted
I did not read this whole thread but a couple things that come to mind are...
Caffine intake. This use to trigger it for me. So cut that out esp. in the evening.
Also iron levels. Many people who are anemic have restless leg.
I use to get it frequently and often in my arms and during the day. It rarely occurs now and if it does is because I've had caffine.
Hope this helps
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
TS96; Thanks..I do get low hematocrit ever now and then so I am upping my iron intake.
Re; the caffine thing. I increased my intake from 2oz of caffiene to 4oz. 2 weeks ago.
Do you think such a small amount could cause it? I guess if you are super sensitive right?
Anyway, thanks for the ideea about the caffine.
Posts: 376 | From New Jersey | Registered: Jun 2009
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timaca
Frequent Contributor (1K+ posts)
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posted
OK...I get this too (RLS in entire body). I don't do caffeine, my iron is fine (watch that like a hawk), I did have RLS, but taking Mg has relieved that (I take Mag Tab SR)...I'm guessing...just a guess here, that in me, it is related to a recent reactivation of EBV (noted by lab values, and my feeling worse about a week before the labs were drawn--and that's pretty much when the full body RLS kicked in too). I'm guessing the EBV got into my nerves causing full body agitation or restlessness. I'll be seeing my doctor in 2 weeks and will run this idea by him.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
If what you're describing is a shaking of the whole body then I've had it and I believe it is essentially a mild seizure. Convulsions of the whole body, be they wild thrashing or just shaking, aren't caused by just deficiencies of some essential nutrient. Shaking of the whole body is a result of excessive neurological activity. The co-infection that most commonly causes seizures is Bartonella, so you should ask your LLMD about that.
I know that "seizures" sounds very serious, but a seizure doesn't have to be rolling around on the floor. Convulsions for any period of time are classified as seizures, and that is what whole body RLS is.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Pinelady
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posted
"Restless Leg" they have invested millions of dollars in meds for that....
I would try some B12 IM for the nerves.
As well as electrolyte replacement drinks like they make for vomiting and diarrhea with the mag.
The liquid Mag is great before bed for a good nites sleep.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lucky for me its just my legs!
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