posted
I have read some other posts stating that seizures can sometimes be caused by Bart and am wondering if my childhood seizures may have been caused by a Lyme/Bart co-infection.
They started at the same time as a lot of other symptoms, around the time the "suspected bite" was thought to have occurred. I was 9 yrs old and started having seizures when I laid on one side of my head (only that side) while I was about to fall asleep. I remember the first one, I started trembling and dry heaving, but managed to stop it by quickly getting out of bed before I lost complete control of my muscles (maybe this was just the aura to a seizure?) I had no clue what had happened so I went downstairs and tried to explain it to my mom who understood nothing but saw that I was slurring my words and drooling a bit. She took my temp and in the end just sent me back to bed. After that, I remember having several seizures during the night, still having no clue what was going on (very scary for a little kid). Most of the time I'd lose control of my muscles and do the choking/dry heaving thing but still be able to hear and see. Sometimes I'd slip in and out of conciousness but I remember being aware, or at least aware of one or two senses, very often during these. Sometimes I could stop it by rolling out of bed and letting myself bang against the side of the bed until I regained full control of my muscles.
It wasn't until I was 12 that my parents caught me having a seizure that lasted about 15 minutes. They called the ambulance and I spent the night in the hospital but by then I was perfectly alert and fine so they sent me home saying I had had a grand mal seizure. My parents took me to a neurologist and I had many EEGs and MRIs done but all came back normal (they weren't able to catch any live) so he diagnosed me with benign childhood epilepsy. The seizures continued until I was about 15 and I haven't had any since so I just assumed it really was a childhood condition that I had grown out of.
Sorry for the long history, but could these seizures possibly have been caused by Lyme or Bart? I also developed several other symptoms at that time they started, including a blinking tic, decreased appetite, fatigue, low body temperature (96-97), sensitivity to cold, and slight problems with concentration. A medical professional never managed to document a seizure, they only went off of my parent's description of what they had seen.
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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joalo
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-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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I'm not sure if seizures are caused by bart or not, but I'm having seizures now, too. Mine are likely partial or absence seizures though, not grand mals.
I had an EEG after driving my car off the road in December having a seizure, then had another seizure in front of paramedics, too. But the EEG that followed appeared normal. They did mention some suspicious spikes; they just couldn't say for sure if this was seizure activity due to muscle tension in my lower jaw, which is pretty constant. I honestly think this muscle tension in my lower jaw is seizure-related, but most doctors aren't listening to me.
I had another EEG (24-hour ambulatory EEG) this past week. I had no 'events' similar to the ones I had in December, so I'll bet this EEG also shows nothing. I'm a little upset because I've had two seizures since my car accident, but I never seem to have one during my EEGs?
My seizures start as a metallic taste in my mouth, followed by a short dizzy spell. I do not collapse or anything like that, but I am unable to respond verbally and experience extreme confusion for several hours afterwards. I am able to do some reflexive activities following the seizure...like putting the car in park or walking to the futon and laying down. But during the seizure I seem to space, couldn't steer, couldn't depress the brake pedal, couldn't respond to my neighbor who was freaking out on me because we were about to crash (though I could HEAR her 'off in the distance'), didn't even realize I'd ended up in a ditch initially.
It's funny that you mentioned sleeping on one side can sometimes trigger a seizure. For several years I couldn't lay on my left side without feeling weird...specifically, my heart would start beating weird. Since my seizure, however, I seem to be able to lay on either side more without heart issues...knock on wood.
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
I just wanted to say that I am sorry you have had to experience a seizure at such a young age. I know thus is very scary. Bartonella does cause seizures.
I began having them after I wad reinfected with bartonella in 2008. My llmd believes the timing is not a coincidence. I also never had a positive eeg which I was told was typical of this disease.
I also experience an aura and have complex partial seizures. Mine are triggered by lights, noise, and repetitive movement. Magnesium iv and oral glycinate has almost stopped them. I know either lyme or bart decrease mag levels so this makes sense.
Best of luck.
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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Elizza -- One indirect test that very few docs do that can indicate seizures is the prolactin levels -- the level often goes up (doubles or more) following a seizure and may be above the normal range. Not sure how long the level stays elevated though. You would need to test the level when you are stable to get a baseline and then again after what you feel is a seizure event.
exdancer -- Hubby has had headaches that only bother him when he sleeps on his side -- can't remember if it is the left or right side.
Not to scare you or anything, but I did run across a young girl (think she is 18 now) on the caring bridge site who had seizures as an early lyme and/or bart symptom years before she developed much more severe symptoms. Here is the link.
Be sure your LLMD knows about your possible seizure history. It may be advisable to go slow and titrate all meds slowly to make sure you do not trigger a return of the seizure-like episodes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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My seizures were grand mal and I haven't had one in 7 years, even though I wasn't treated for Bart until this January. Most of the other symptoms that developed at that time remained much longer. Never had a positive EEG.
I think I read somewhere that Bart is more likely to cause seizures in children...so maybe there is a possibility that a person can grow out of them without any treatment? Or maybe the bacteria spread to another part of the CNS and the symptoms change. Have many questions for my LLMD when I see him on Wednesday
@elizzza: I also used to have an aura and then a gradual loss of muscle control going into my seizures. Laying in bed, I would first feel a sensation of falling backwards headfirst and my body would feel like it was shaking before it actually started.
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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Bea, a high prolactin can indicate a seizure? OMG! My prolactin WAS high in the past, though they never found the cause. This was years and years ago. I had it tested because I was experiencing crusty nipple discharge.
exdancer, your seizures are a little different from mine...I don't shake at all...I just zone and lose memory.
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posted
Interesting! Yes, the main difference between our seizures is that mine were grand mal (muscle contraction/relaxation of the whole body) while yours are petit mal ("absence" spells, loss of conscious awareness).
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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It's not looking good...I had another seizure today. I honestly couldn't remember the phone numbers of people closest to me, my head was pounding, my ears were ringing and 'wooshing', and this time it even included vomiting. And I still don't feel right...
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
Wow I never knew that seizures could cause elevated proactive levels. Mine and my brothers (also has lyme) have also been elevated in the past and my Dr never told me this.
Thanks so much for the info . I haven't had a seizure in months and had a few at night on the 16 and 17th. I hear there's also a full moon out...
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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It's not just full moons to be aware of with regards to seizures. I woke up with a seizure the morning of February 16th, and solar activity had just the night before 'kicked up' a notch or two with the strongest solar flares since December of 2006...X-ray and M-class solar flares, radio bursts, radio blackouts...you name it.
Keep in mind that the times listed on the following websites are in Universal Time (so you'd need to factor in your time zone), but check them out daily like I've been doing, and I'll bet you notice a correlation between your seizures and solar activity. Some of the websites actually allow you to look backwards in time at solar activity, so if you keep a seizure diary, you might want to investigate.
I've actually noticed a few 'consistencies' between my seizure events and solar geomagnetic...(see notes below)...
...solar 'extremes' - meaning disappearing or zero sunspots, or conversely, huge 'loud' sunspots producing radio bursts and X-ray solar flares seem to be seizure triggers for me.
...'zero dynamic pressure' after a long period of positive pressure seems to trigger them in me, especially if it's zero dynamic pressure and neutral...that's when I feel my worst and my seizures are of the memory-loss type.
...when the 'electron flux' blue line goes 'jaggedy blue', I'm more likely to seizure; but this last time I seizured, the 'proton flux' line actually began to climb as well, and this was my worst seizure yet.
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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. I haven't had a seizure in months and had a few at night on the 16 and 17th. I hear there's also a full moon out...
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