Neuroborreliosis & Epileptogenesis.

[EmersonAilidh]

My SpellCheck does NOT like that title, hahaha.

 

Anyway. Just a thought here.. I posted a few days ago about an EEG coming back "conclusive of epileptogenesis in the parietotemporal focal area of the brain". There was more information but I gave my records to another doctor to review so I don't have the paper on me right now. :/ A few google clicks later I figured out that EpileptoGenesis is the series of events occurring in the brain between when a patient actually GETS Epilepsy & when they have their first seizure. After more reading I kept hearing that the main possible causes were stroke, physical brain trauma, neurodegenerative diseases, & infection. Well, I'd LIKE to think that I'd know if I had a stroke or physical trauma, although it this point I can't say that I'd be too surprised if they told me otherwise. While searching for a doctor to pursue a clinical diagnosis (positive test already in hand) I've been reading about Lyme, particularly in Cure Unknown. & I stumbled upon Neuroborreliosis, where the bacteria can infect the Central Nervous System. Could that possibly be a cause?? I believe I was bitten by the tick in the summer of 2006 (honestly can't exactly recall.. It could have been fall of 2005?), symptom explosion came in fall/winter 2006, & seizures seem to have been on the mind of everyone i've seen. I've never read about Lyme patients with seizures though. Is this uncommon, impossible, or likely?? Just wondering. Trying to pinpoint a possible cause.

[lyme_mom]

My SpellCheck does NOT like that title, hahaha.

 

Anyway. Just a thought here.. I posted a few days ago about an EEG coming back "conclusive of epileptogenesis in the parietotemporal focal area of the brain". There was more information but I gave my records to another doctor to review so I don't have the paper on me right now. :/ A few google clicks later I figured out that EpileptoGenesis is the series of events occurring in the brain between when a patient actually GETS Epilepsy & when they have their first seizure. After more reading I kept hearing that the main possible causes were stroke, physical brain trauma, neurodegenerative diseases, & infection. Well, I'd LIKE to think that I'd know if I had a stroke or physical trauma, although it this point I can't say that I'd be too surprised if they told me otherwise. While searching for a doctor to pursue a clinical diagnosis (positive test already in hand) I've been reading about Lyme, particularly in Cure Unknown. & I stumbled upon Neuroborreliosis, where the bacteria can infect the Central Nervous System. Could that possibly be a cause?? I believe I was bitten by the tick in the summer of 2006 (honestly can't exactly recall.. It could have been fall of 2005?), symptom explosion came in fall/winter 2006, & seizures seem to have been on the mind of everyone i've seen. I've never read about Lyme patients with seizures though. Is this uncommon, impossible, or likely?? Just wondering. Trying to pinpoint a possible cause.

Lyme can affect the central nervous system and it manifests itself in many different ways. Didn't you say that your lyme test results indicated exposure to lyme? The test was negative but you had indeterminate bands for lyme specific antibodies, right? You do not need a fully positive test to be diagnosed and treated for lyme disease. I would go see an ilads trained lyme specialist b/c they can really get to the bottom of this and get you on the right combination of antibiotics if they think lyme and or other coinfections are involved. None of us can tell you whether you have it or not but it is extremely common now from coast to coast. You don't even need to have history of a tick-bite either but since you remember a tick bite that makes your history more suspicious for lyme. Good luck!

[EmersonAilidh]

My SpellCheck does NOT like that title, hahaha.

 

Anyway. Just a thought here.. I posted a few days ago about an EEG coming back "conclusive of epileptogenesis in the parietotemporal focal area of the brain". There was more information but I gave my records to another doctor to review so I don't have the paper on me right now. :/ A few google clicks later I figured out that EpileptoGenesis is the series of events occurring in the brain between when a patient actually GETS Epilepsy & when they have their first seizure. After more reading I kept hearing that the main possible causes were stroke, physical brain trauma, neurodegenerative diseases, & infection. Well, I'd LIKE to think that I'd know if I had a stroke or physical trauma, although it this point I can't say that I'd be too surprised if they told me otherwise. While searching for a doctor to pursue a clinical diagnosis (positive test already in hand) I've been reading about Lyme, particularly in Cure Unknown. & I stumbled upon Neuroborreliosis, where the bacteria can infect the Central Nervous System. Could that possibly be a cause?? I believe I was bitten by the tick in the summer of 2006 (honestly can't exactly recall.. It could have been fall of 2005?), symptom explosion came in fall/winter 2006, & seizures seem to have been on the mind of everyone i've seen. I've never read about Lyme patients with seizures though. Is this uncommon, impossible, or likely?? Just wondering. Trying to pinpoint a possible cause.

Lyme can affect the central nervous system and it manifests itself in many different ways. Didn't you say that your lyme test results indicated exposure to lyme? The test was negative but you had indeterminate bands for lyme specific antibodies, right? You do not need a fully positive test to be diagnosed and treated for lyme disease. I would go see an ilads trained lyme specialist b/c they can really get to the bottom of this and get you on the right combination of antibiotics if they think lyme and or other coinfections are involved. None of us can tell you whether you have it or not but it is extremely common now from coast to coast. You don't even need to have history of a tick-bite either but since you remember a tick bite that makes your history more suspicious for lyme. Good luck!

 

No ILADS doctors in Texas (lucky me...) but I found a doctor that HAS & diagnoses Lyme.. but will not treat it long term. It's completely illegal here. Once we do that, we'll go from there. HOPEFULLY we'll leave with a diagnosis & can pursue treatment out of state; the antibiotics can't be PRESCRIBED in Texas but they can be used. Lyme test was positive, yes. That doctor washed his hands of me (as i've read he's done to others in my situation) the second he saw that though, so I'm waiting for my Mom to get back from Austin to schedule an appointment with this Lyme doctor. Waiting on a recommendation from a general physician to a neurologist or epileptologist that is at least Lyme receptive, as well. So many things on my plate, it's hard to figure out what to tackle first. Thank you for your help!!

 

Does anyone know of any evidence of Epilepsy in Lyme patients?? I haven't heard of it, but I figured the CNS connection couldn't be ignored & I couldn't think of any other possible cause.

[lyme_mom]

My SpellCheck does NOT like that title, hahaha.

 

Anyway. Just a thought here.. I posted a few days ago about an EEG coming back "conclusive of epileptogenesis in the parietotemporal focal area of the brain". There was more information but I gave my records to another doctor to review so I don't have the paper on me right now. :/ A few google clicks later I figured out that EpileptoGenesis is the series of events occurring in the brain between when a patient actually GETS Epilepsy & when they have their first seizure. After more reading I kept hearing that the main possible causes were stroke, physical brain trauma, neurodegenerative diseases, & infection. Well, I'd LIKE to think that I'd know if I had a stroke or physical trauma, although it this point I can't say that I'd be too surprised if they told me otherwise. While searching for a doctor to pursue a clinical diagnosis (positive test already in hand) I've been reading about Lyme, particularly in Cure Unknown. & I stumbled upon Neuroborreliosis, where the bacteria can infect the Central Nervous System. Could that possibly be a cause?? I believe I was bitten by the tick in the summer of 2006 (honestly can't exactly recall.. It could have been fall of 2005?), symptom explosion came in fall/winter 2006, & seizures seem to have been on the mind of everyone i've seen. I've never read about Lyme patients with seizures though. Is this uncommon, impossible, or likely?? Just wondering. Trying to pinpoint a possible cause.

 

Lyme can affect the central nervous system and it manifests itself in many different ways. Didn't you say that your lyme test results indicated exposure to lyme? The test was negative but you had indeterminate bands for lyme specific antibodies, right? You do not need a fully positive test to be diagnosed and treated for lyme disease. I would go see an ilads trained lyme specialist b/c they can really get to the bottom of this and get you on the right combination of antibiotics if they think lyme and or other coinfections are involved. None of us can tell you whether you have it or not but it is extremely common now from coast to coast. You don't even need to have history of a tick-bite either but since you remember a tick bite that makes your history more suspicious for lyme. Good luck!

 

 

No ILADS doctors in Texas (lucky me...) but I found a doctor that HAS & diagnoses Lyme.. but will not treat it long term. It's completely illegal here. Once we do that, we'll go from there. HOPEFULLY we'll leave with a diagnosis & can pursue treatment out of state; the antibiotics can't be PRESCRIBED in Texas but they can be used. Lyme test was positive, yes. That doctor washed his hands of me (as i've read he's done to others in my situation) the second he saw that though, so I'm waiting for my Mom to get back from Austin to schedule an appointment with this Lyme doctor. Waiting on a recommendation from a general physician to a neurologist or epileptologist that is at least Lyme receptive, as well. So many things on my plate, it's hard to figure out what to tackle first. Thank you for your help!!

 

Does anyone know of any evidence of Epilepsy in Lyme patients?? I haven't heard of it, but I figured the CNS connection couldn't be ignored & I couldn't think of any other possible cause.

 

I didn't know it is lllegal to treat to chronic lyme in Texas! They don't limit antibiotics for treatment of acne or ear infections. That is really too bad for everyone who lives in Texas. I hope you can get to a good lyme doctor b/c they will know what drugs you need for lyme and other infections whether it be strep, mycoplasma, bartonella or babesia. I believe that any of these infections can cause neurological symptoms. I believe lyme or other tick borne illnesses are at the root of many health problems but it is so hard to get this information b/c so few doctors understand lyme disease.

[MichaelTampa]

Emerson,

 

Yes, I have heard of patients with lyme having seizures. I have had symptoms that didn't explode on the scene like some of yours, but built gradually over perhaps 35 years before a lyme diagnosis. As the symptoms got worse and worse, and I went to more doctors and explained the symptoms, I did get very used to getting asked by everybody, if I had ever had any seizures (no, I haven't, not yet anyway). Perhaps it's just a good question for someone with neurological problems, perhaps the sensitivity to fluorescent lights (which flash constantly even if not everyone can see it) is what caused the questions, as that triggers seizures in some epileptics.

 

The lyme infects tissue, and, bottom line, if the lyme infects your brain, all bets are off regarding what havoc can ensue, just the unfortunate reality, seizures for some and not others, poor memory for some and not others, nightmares for some and not others, sensitivity to wireless devices for some and not others, tics that will cause a Tourette's diagnosis for some and not others, and on and on. I have heard a lot more of people with Tourette's having seizures than those with lyme, but, of course, there are no doubt plenty with Tourette's where the symptoms are caused by lyme and that has just not been figured out yet.

 

I probably should point out, one poster on a different forum will get seizures from taking an amino acid supplement Glutamine, which can be used to great benefit by others with various problems. Glutamine can increase activity in the central nervous system, and that is probably the issue there for that person, so caution can be appropriate with some supplements/drugs.

 

Michael

[sf_mom]

I had unexplained epileptics type seizures while pregnant with my twins (biting my tongue during seizure). I am positive for LD.

 

-Wendy

Edited September 16, 2010 by SF Mom

[JTs-Mom]

If you search Google Scholar for "borrelia and epilepsy", several interesting articles/abstracts come up. Here are a couple.

 

http://www.ncbi.nlm.nih.gov/pubmed/8009148

 

http://wple.net/plek/numery_2007/suplement-3-2007/kacinski-38-40.pdf

[EmersonAilidh]

This board really needs a "Fast Reply" box like the P.A.N.D.A.S. one!

 

 

Lyme Mom ~ You're telling me! Learning that almost knocked me off of my feet. Out of the frying pan, into the fire. I've found a doctor in the area who HAS third-stage Lyme himself & I believe that he diagnoses but won't treat. That's our next step, along with testing for co-infections (Mycoplasma was already positive) & secondary infections. Time to knock all of this out. I'm in the middle of Cure Unknown & managed to read about Jamie Forschner the day that I posted this. Not exactly the most comforting timing. Unless I managed to have a stroke or some blunt trauma without anyone noticing, this is really the only thing that makes any sense in my head.

 

MichaelTampa ~ Thank you so much!! That was helpful. My Mom's general physician/gynecologist has been involved in our family because of my Mom's problems in that field so I saw him last week & he is Lyme receptive but will not treat. He is helping me find a Lyme receptive neurologist or epileptologist to get to the bottom of all this. The whole time he was suggesting Epilepsy he said he didn't believe that they were triggered by lights or things like that, though. I know just-about-nothing when it comes to Epilepsy, so I don't know if that means anything. :/

 

SF Mom ~ Thank you! That sounds scary. I'm sorry you had to go through that.

 

JT's Mom ~ My Google skills are lacking. For some reason I only searched "Neuroborreliosis" & not just the regular kind, haha. Thank you for those links! Especially the second one. <3

Edited September 18, 2010 by EmersonAilidh