posted
If you have ever had these symptoms, please keep reading, I'm beginning to get worried:
Twitching (understatement of the year!!)
Unintentional flailing
Limbs (on the left only) seem to have a mind of their own
Contorting limbs (due to spasms and jerking)
Neck turning/jerking violently toward the left
Left-eye twitches and fascilations of the eyelid
Impaired gait, walking on tip toes without meaning to
I've been avoiding posting but I jsut can't takeit anymore. I really just need to know that SOMEONE has had these outrageous, very noticable symptoms, on just ONE side of the body. Thank you so much.
Background: Got Lyme and coinfections (bartonella) 2 to 3 years ago, have been on antibiotics for the past six months. When I first started treatment, I immediately started herxing. The most unnerving symptom that I had related to herxing, was an increase in my left-sided neurological symptoms. Again: only on one side! These were really bad during the first few months of treatment, then it gradually tapered off. The jerking and twitching have continued to occur every now and then, but nothing like when I first started to herx. And until recently, I always associated them with the herxing...
Recently I had started to get a white tongue (yeast overgrowth) so I had to stop the antibiotics until I can get that under control. Even OFF the abx, I have still been improving; my bartonella AND lyme induced fevers have both stopped, and that was my main indicator of how my treatment was working. The antibiotics definitely helped so far!
BUT NOW, one week after being OFF of antibiotics, my flailing and twitching and jerking have come back with a vengence! I even developed a pinched nerve in my left arm from all the contorting and jerking. Ow. So there, the symptoms I associated with herxing, because they always happened a few hours after I took my antibiotics, are now happening when I'm not even taking them! (But no other symptoms have returned, just this "set" of neuro things.)
I've tried muscle relaxors, anti-seizure drugs, and barbiturates (which works for some seizure disorders), and I can only get an hour of slight relief from any of them.
All my MRIs before starting treatment showed no brain lesions so at least to my knowledge, I don't have MS. Also, NO this is not related to magnesium, and NO, this is not restless leg syndrome, I have tons of experience with both and this is different. I just don't understand: The herxing was what made these symptoms start, but now they're happening without a herx... Or are they? I do take an anti-bacterial herb, but could that really be causing this, if it IS a herx? Have any of you herxed on herbs???
Again, thank you for reading, I'm so confused
[edited to enable my e-mail notifications on this post]
[ 05-27-2010, 02:23 PM: Message edited by: Elizabeth S. ]
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Sounds a lot like hubby -- his tremors, myoclonus and dystonia have always been primarily in his left arm and right leg. Of course that confuses neurologists.
What you are describing with the neck twisting to one side is very similar to dystonia.
If you have not had a brain SPECT scan then I would suggest one. It will most likely show global hypoperfusion -- means you aren't getting enough oxygen to your brain because of brain infection from lyme and bartonella.
It sounds like bartonella is your primary issue since the symptoms came back so quickly.
Hubby used to also have seizure-like episodes with his tremors etc and his symptoms always were aggravated by antibiotics until the last couple of years. After he got rid of his babesia he could tolerate the antibiotics much better and not have a reaction to almost every dose.
The main thing that works for symptom control for hubby is ativan. He also tried several seizure meds which didn't work. The one time he tried a muscle relaxant I think he ended up in the ER if I remember correctly.
Actually there are 2 herbs that have helped hubby more than all the antibiotics with these symptoms. The first was cryptolepis tincture and the 2nd has been stephania tincture. Both are available from Woodland Essence. Both are part of the Buhner herb protocol and both cross the blood brain barrier.
Other things that helped briefly -- high dose of Cortef (30 mg daily) -- but really should be on antibiotics while taking this. Also very low dose Benicar -- but had to stop due to orthostatic hypotension. Another possibility is Lumbrokinase -- start slow and work up.
Yes -- you can definitely herx on herbs as well as antibiotics. What is the herb you are taking?
Hubby has been sick for 9 years -- undiagnosed for over 2 years. It is only in the last couple of years that he has had major improvement in his tremors and myoclonus -- all movement problems about 85 % gone.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Do you think these jerks and things are the bartonella? It's hard to tell what is happening, since before, this happened as the result of the bugs dying, and now.. it's happening because of them replicating? These illnesses are so hard to pinpoint, but I'm "glad" to know that there is someone else who has symptoms like these. Though I hope I can hear from someone else who has it ENTIRELY on one side, especially the things like walking on tip toes and things, because my right side is fine, and of course I have random twitches throughout my body, but the major things in that list only happen on my left, no matter what it is.
I do understand the tremors and seizure-like episodes as bart has also caused me to get those, it was another part of the herxing when I first started, part of the symptom set that graudally faded away.
I can agree about herbs helping even more than antibiotics. I take olive leaf extract, and while on antibiotics, things only started to really improve once I upped the OLE dosage to accomodate the growing number of infections. This happened twice, as I had to stop everything once before, and the abx only seemed effective once it had the "help" of this herb.
I'm glad to hear he is doing better! I hope to be there as well, and I would definitely be considered on the upside minus this horrendous flailing about!
Thank you for your reply
Elizabeth
Posts: 161 | From Southern United States | Registered: Sep 2009
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I know it wasn't a medication because this happened due to herxing on two different antibiotics and now it's happening even without them. It's caused by something else, I just hope it's related to something trying to improve and go away, rather than more damage being done.
Thank you for your reply, I feel better knowing someone else has the "one side only" thing going. How did it get worse?
Posts: 161 | From Southern United States | Registered: Sep 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would be very hesitant to take drugs that contain lamotrigine and sodium valproate. Those are the 2
suspect in SJS and TENS. I don't know the actual incidence, but since they don't really know how it
-------------------- 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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Olive leaf extract is one of the herbs that is supposed to help treat bartonella. However, in hubby's experiences bartonella or mycoplasma or whatever he has (positive bloodslides from both F lab and Clongen) seems to become resistant to both meds and herbs over time -- has to keep adding more things and switching out other things.
Since hubby's movement problems have improved it is primarily his left arm and shoulder and left side of his face that is affected-- he has what I call his rabbit face -- nose etc twitches like a rabbit. He used to have transient Bell's Palsy -- only acted up when he had seizure-like episodes -- but those happened multiple times every day.
Hang in there -- I do think things can improve.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Pinelady Thank you for the warning, I'll be sure to do my research if I end up needing new medications.
Bea: Yet another thing I understand, the transient episodes of Bell's Palsy. Sometimes I wake up and one side of my face won't move for half the day, but it does recover. I doubt that would "fly" with any neurologist, though. =\ Luckily thats one thing I haven't had in several months. The jerking and twitching aren't as severe as they were two days ago, which is comforting to a point...
Lymetoo: I guess if you look at it as, herxing can bring about new symptoms, then what you said does make sense. Because it would just be a new symptom that would be happening, AND/OR one that gets worse due to the herxing. My cardiac symptoms did a similar thing: They already existed but when it came to herxing I almost ended up in ther ER, like many here.
Thank you all for your encouragement and advice.
Here is hoping SOMEONE out there reads this who has had the neck twisting and tip toe walking and involuntary flailing, I would really like to talk with them!
Elizabeth
Posts: 161 | From Southern United States | Registered: Sep 2009
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i still have random twitching, myoclonus etc. though. Treatment, treatment and treatment......
Posts: 347 | From sweden | Registered: Feb 2008
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posted
"he has what I call his rabbit face -- nose etc twitches like a rabbit. He used to have transient Bell's Palsy -- only acted up when he had seizure-like episodes -- but those happened multiple times every day."
You are describing ME......horrible disease.....I now have the rabbit stuff going on.....
Posts: 347 | From sweden | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
My neuro came to the foreground when I started treatment for lyme. It was not as bad as yours or laster for as long. I woke up in the night with my left arm literally bouncing up and down on the bed! I had ataxia and vertigo - could not walk without holding on to something.
Lyme seems to affect one side of the body (according to what I have read) while the co-infections are bi-lateral. But it could be both as bartonella and lyme cause muscle twitching.
It could be if your abx is primarily addressing lyme, that bartonella is surfacing and taking over That happened to me but my symptoms were not the same as yours although there was a lot of twitching.
You can take nystantin to control the yeast so you do not have to quit the abx. Bart comes back in days whereas lyme takes a few weeks. It is best not to quit if you can, but if you have to, take a large amount of herbs - which by the way do not work against bart, as I have taken up to $600 a month in herbs and relapsed. And I took EVERYTHING!
So if I were you I would change your protocol to address bartonells so see if there is any change for the better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Recently, after 20 years, I have discovered that eating dairy causes an exacerbation of all the neuro sx including twitching. I am now in the midst of determining if gluten does the same (I'm afraid it does).
When I am off dairy, Magnesium Potassium Aspartate slone can control the twitches. If I eat any dairy, I need to take the rx med Baclofen for a couple of days.
I would never have believed a food could do this (24+ hoursa later, btw), but thems the facts.
Good luck.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
I've had the same symptoms. Severity of it changes wildly.
It started with my right side, then slowly became full body, then more on the left side. My neuro symptoms changed as well. My left eye wasn't seeing properly, then it changed to my right.
Started getting worse once on abx, then started cycling with the rest of my symptoms, about every two weeks. Seems to get worse if I run out of abx.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
swedish: Thank you for your reply! I'm so sorry that you've also had ALL of this but wow, is it ever a relief to know someone out there has experienced this in relation to Lyme/coinfections!
The strange thing about Doxycycline is that it reaches the same levels in your blood as if you'd done IV treatment, which is why I prefer it (and why, I suppose, why it's working so well for me in comparison to other abx). So you had IV treatment and still have these things giong on/gettng worse?
nefferdun: It's funny that you mention once Lyme gets under control, other things take over, because it was when I started treating Lyme that I started getting Bartonella flares! I actually had to make a post about it because my once-a-month fevers turned into every-5/6-day fevers, and i was very confused! And now I'm your classic bart case, with neuro symptoms horrendously out of proportion with everything else... Ugh.
Unfortunately I was on anti-yeast treatment, just as a preventative measure because my immune system is very poor, while on the abx, and it made no difference int he yeast taking over.
I can't agree that herbs do not work, if you take the right KIND of herb it can be very effective. It's just that taking herbs is like taking antibiotics: Every body is different and needs something specific for it. I'm lucky that I have found that for me, I've been on olive leaf extract for several years and as long as it's at least 20% oleuropein and doesn't contain pointless fillers (like cellulose), it's amazingly potent when you take it CONSISTENTLY and at the right dose. I'm ashamed to say I thought I could get away with taking it "whenever" but it's one of those things that work like an antibiotic for me: EIther you take it how you're supposed to, at regular intervals, or don't even bother.
However, I have to agree that being bartonella-specific right now would be a good idea.
Thank you for all the suggestions
dsiebenh Yes, I had thought of that, too! Luckily for me I'm not a dairy person anyway, if that were ever the case, but so far in my own "tests" I have not found dairy or gluten to be the cause. Thank you for the idea, though! I'm glad to hear you found a solution.
Oldman I'm sorry you've had this happen as well, but at least we know that it's (apparently) common to have it on one side or the other. I wonder why it cycles every two weeks? If bart symptoms flare every 5-7 days, and babesia cycles every 4-6 days, and Lyme every 4 weeks, I wonder what's the cause of that?
Thank you all for your insight
Elizabeth
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Just an update on this old post: As of the past week or so, my jerking and twitches and things have lessened greatly. I hardly ever have the full left-sided flailing that I had when I made this post, and my neck hardly ever turns to the side. I honestly can't remember the last time it did this... As for what caused it? I have no idea. As for what caused it to lessen? Maybe it lessened because I've been off of antibiotics for three months, maybe because of me taking other herbs (oregano oil), maybe because.. well, I just don't know.
But things have improved regardless.
Posts: 161 | From Southern United States | Registered: Sep 2009
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