posted
I am just wondering if this worsening of the symptoms of Restless Legs Syndrome might actually be a sign of herxing.
RLS is a neurological disorder.
I have had the symptoms since I was a child (I am 45 now), but I am pretty sure I got Lyme as an adult (20 1/2 years ago).
So, I don't think my RLS is originally from Lyme, but it's just getting so much worse ever since I started taking ABX.
I don't think herxing bring on any symptoms that are not related to Lyme, but does it?
Or is this totally coincidental?
Do any of you have RLS as one of your Lyme symptoms?
Thanks.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi shizuko
RLS is very common symptom-of lyme -- - mostly Babs tho --
Kids normally have some RLS- up until early teens- then it stops-
Usually taking ABX can bring out new symptoms - and make existing ones worse for awhile-Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Up for more comments.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I would say from my experience this could be a Herx. When i herxed after starting tinidazole my legs were really bad....they buzzed like a vibration. The abx could make RLS worse, at least for me it did.
hope this helps
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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posted
I, too, have had RLS for years and it has worsened during my Lyme tx. Two types of meds were implicated: SSRIs are known to worsen restless legs. Levaquin has made my RLS much worse (and depression) too however my docs seem to thing my hellish time with Levaquin is because I'm finally killing off Bart.
The docs now are looking at Requip and some anti-convulsants to help me deal with the RLS so I can take an SSRI.
I've also used GABA increasing herbal supplements (TranquilNite), free glycine, 5HTP in an attempt to get some sleep. Rozerem works about half the time. A trial of Xanax worked wonders but I'm concerned about habituation/addiction.
Will talk to one of my LLMDs about all this Wednesday but don't have much hope other than the muster thru 2 more months of Levaquin. My guess is that it may be the neurotoxins from the dying bugs and the Levaquin lowering levels of GABA in my brain that are making my RLS so bad right now.
FWIW, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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I just posted my experience with RLS and Requip under your thread on RLS!
I started with Doxy in mid March, then added Biaxin, then Omnicef very recently, and my RLS has been just crazy.
My neurologist said I could take Requip early evening and at bedtime and thereafter as needed, so I have been doing this for a while as I slowly increase the dose for each time as necessary.
Sometimes gentle massage on my legs does help me fall asleep, though I might be kicking my legs as my husband rubs my legs.
Quite often, pain in any part of the lower body seems to trigger the symtoms of RLS in my case, but I have no idea why.
With higher dose of Requip, plus Zonegran (anti-seizure), I think I can sleep a little better now than before.
I really feel for you. Take care.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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Thanks so much for sharing the info. I have a two week starter packet of Requip and a bottle of Gabitril (anti-seizure, I think, too) so your post makes me feel a bit better about starting these - adding one at a time, of course.
So interesting what you say about pain triggering the RLS. That happens for me, too. I burn moxa (mugwort herb) over my belly as rxed by my acupuncturist, when I get to close and give myself a little burn, I get instant RLS!
If I don't get an appointment from any of the calls I have out to sleep docs and psychopharmacologists, I may just start the Requip.
An LLMD/Psychiatrist (with whom I had a phone consult) suggested that I start any of these meds very slowly - this doc finds Lyme pts to be really sensitive to meds. Did you start slowly with the Requip and anti-seizure med?
Funny, I started doxy and then biaxin/omnicef in March of last year with no memorable effect on my RLS.
Take care, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
When herxing all symptoms increase badly.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Yes, I had to start both Requip and Zonegran at a very low dose and increase gradually - just as I need to do for most other medications.
I am very sensitive to many medications, but even if I were not, it would be probably a good idea to start at low.
My first dose of Requip was just one 0.25 mg, which made me very nauseated, so I didn't continue that time.
But I just couldn't stand being so restless that I decided to give it a try and stick to it.
Taking it with food helped.
Anyway, even with a very low dose this med did a wonder for me although I have had to occasionally increase the dose.
Requip is known to cause Orthostatic Hypotension, though my guess is most likely from higher dose and/or longer usage.
My neurologist did tell me that Requip could make the RLS worse (rebound & argumentation), but since it helped me so much at the beginning, we decided to increase the dose and see how I would do.
But I have been thinking that worsening of RLS could be herxing.
The other thing is my potassium level has been always low, and that might be affecting RLS. So, my LLMD gave me a prescription for potassium supplement, but it didn't help me at all.
You might want to be checked for potassium level too.
I hope you will get an appointment with one of the doctors you called! Hang in there.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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