I will try to make this brief. Please bare with me for any typos or rambling. I am so exhausted.
I have had RLS off and on throughout my battle with Lyme. Never sever enough to take medication for it.
I just restarted abx about a week ago after a trial run without any meds. Since Irestarted on the Zithro and Flagyll my legs are driving me crazy. I am having great difficulty at night time..need to move legs all around. It is no affecting me during the day too.
Could having increased RLS be part of a herx? I haven't heard anyone else mention that. I generally don't have typical herxes..mine are increased fatigue...twitching..anxiety.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My LLMD's assistant told me that a recent study shows a connection between RLS and anemia (low iron).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vanilla
Unregistered
posted
I would take some iron and if possible get magnesium in an IV.
I take my iron in cell salt form because it melts under the tongue and goes right into your system. I take ferrum phos in a 6 x dose made by Hylands and I take their mag phos too. I have no connection with Hylands and you can buy them online or at your local health food store or national health food chain.
Most LD patients need extra magnesium and and babesia patients need extra iron.
I am not a doctor I just play one on TV.
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I never had RLS until Bartonella symptoms became huge for me. Now I have RLS terribly, too. I've upped the magnesium and all that but it's not helping (although I have not done IV magnesium).
I'm not saying you have Bartonella, I'm just mentioning it in my case. However, Zith does target Bartonella to a degree, so I'm just wondering if that is a factor.
Also, Flagyl can cause neuropathy (which I have as a major symptom, I don't know if you do). So I'm wondering if the Flagyl is causing you any type of neuropathy that would re-trigger the RLS? Just theories.
Sorry you're suffering. I can totally empathize. We should start a phone chat with all of us who are up all night with RLS!!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I will check into the iron and magnesium. My last blood work showed slight anemia. In my book though your either anemic or not...it's kind of like being a little bit pregnant.
I too am positive for bartonella so maybe that does have something to do with it. I finally crashed this afternoon and got a good 2 hours of sleep.
I get my pick line on Thursday. Is the magnesium something I can have put through the line? I will discuss it will my LLMD.
posted
I have dealt with restless leg syndrome for over 40 years. At one point it was so bad I hadn't slept for three nights. I finally got to sleep by sitting in the recliner rcoking as the movement helps.
I have also had it affect my arms to some point.
Finally a doctor put me on Mirapex which is great. The only time it don't work is if I forget to take my iron pills.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Tabby,
I have no documentation on a Bart/RLS link. There may be absolutely none whatsoever.
In my case, it seems that the Bart coincided to some degree with the onset of myoclonic movement and tremors. The RLS seems to be part of this whole new syndrome for me of uncontrollable movement, possibly my autonomic nervous system on overdrive.
I had never heard of Mirapex, just the Requip. I just looked it up. Apparently in a few cases, Mirapex is being blamed for compulsive gambling or other compulsive disorders. How bizarre!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I also have Bart and RLS. I have taken Requip for the RLS, it helps me sleep better but I have trouble with one of the side effects - shortness of breath.....
So I can't take it every night, I have tried to lower the dose, but still a problem. I am also borderline anemic and take iron supplements.
I wish I could take Requip every night, sure sleep better.
Posts: 315 | From USA | Registered: May 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Thanks, Jill.
Sick: Since the RLS has been bugging me during the day, it also is affecting my arms. That's why I was wondering if this day-time stuff was RLS or something else.
Same creepy crawly sensation I've gotten in my legs (at night) for years.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
RLS candefinitely be a herx. I had motor tics that were caused by Lyme. Some of the symptoms were similar to RLS, in that I just needed to move a limb or it drove me absolutely crazy.
It eventually went away. I believe a part of this had to do with starting to supplement B-12 with folic acid. I've done multiple different things at once, so I can't be certain. But B-12 does help neuro symptoms.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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