canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Has anyone here seen a neurologist who was of great help to them, when it comes to seizures produced by Lyme?
My seizures have not yet been detected on EEG, however, it's clear that is what is going on.
I am willing to travel to...wherever there is help.
I am not posting on Seeking a doctor, because this is such a major issue here, for those of us with Neuroborreliosis.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Boy that was quick; I knew it was a hot topic, but I'm realizing that it's a very serious problem for many of us, as Lyme commonly effects the brain and nervous system.
All I can say is that I have had only patronizing experiences with Neurologists, which does not help me. I'm having very real and serious neurological issues, with cognitive deficits as a result of them, and can't get decent help.
I have been casting around for at least a year in Seeking a Doctor, but I cannot find one neurologist that any of us have seen who doesn't have mixed reviews; from the neutral considerations for some [ie: Dr. was OK; Dr. was So-So], to the extreme for others [Hideous; Fantastic].
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Letter requesting help from Neuro suggested on Seeking a Doctor; I'll let you know once I hear a reply:
I am considering consulting with you, as I am in search of a neurologist to address neurological symptoms that are as a result of Lyme disease.
I am a patient of Dr. X since March 2007. I have been suffering disabling symptoms since October 2003, and became bedridden by October 2006, when I was forced to stop working entirely.
Since treatment with Dr. X, I have experienced dramatic improvements, though I continue to be significantly limited in my activities. I am a composer, and most recently, I completed the musical composition for a film. This is the first contract I've been able to complete since October 2006. My improvement is due to aggressive antibiotic therapy, with in no small part the addition of Pregabalin and Lamotrigine for seizures and neuropathic pain.
These seizures are primarily expressed by autonomic symptoms, including vomiting without nausea, a need to move my bowels / diarrhea, confusion, vertigo, muscle cramping, muscle stiffness and pain / shooting pain. I also experience excruciating neuropathy during these episodes, and sometimes begin to fall asleep during the event, and certainly afterward I ``pass out'' in bed, rather than fall asleep.
I had ongoing neuropathy as well as confusion prior to antibiotic therapy and treatment with the anticonvulsants. At worst, I experienced significant cognitive deficits after a series of 6 seizures close together; during the event my visual perception was somewhat akin to a fisheye lens, and I felt that I was going to fall and pass out while I was in a bathroom following the fisheye lens experience.
After this series of events, I could not follow complex descriptions, and was told I was blinking a lot, as I thought to myself, ``I cannot understand what you are saying''. I again couldn't count change, as at the time I had been able to for quite some months. These impairments lasted a matter of weeks. I still suffer some issues in terms of following complex descriptions, and have to have a speaker tell me one thought at a time, pause for me to process, then go on to the next concept, etc.
Before treatment, my photosensitivity was so acute that when light hit my skin, I felt as though I was being beaten, I experienced burning pain, and eventually, I developed a seizure, as previously described. This has improved dramatically, but is not entirely resolved, though I no longer experience the intense beating pain.
I have consulted with three independent neurologists in Canada, with no result that was conducive to a logical diagnosis, proper monitoring, or an increase in ability. My episodes at best have been suggested to be conversion disorder, despite my clear and marked improvements since being on these two anticonvulsants. I have consulted with two independent mental health providers who gave me clean bills of health: one a psychiatrist; the other a psychologist. Additionally, the most recent neurologist I consulted with spoke with Dr. X for 20 minutes, which didn't change his position. So much so that Dr. [NEUROLOGIST] refused Dr. X's request for a SPECT scan.
No seizure spikes have been found on EEG's so far. I had an MRI a few years ago, where two lesions were seen; one at the front of my left frontal lobe, and the other in the tectum of my mid brain.
I recognize that I have to find an appropriate LL Neurologist in the US, who can, and will, advise and monitor me. I have heard some wonderful things about you, and therefore am seeking further information. Do you believe you could give me the practical help that I am seeking, as I continue to recover, and gain ability? Do you believe in post Lyme syndrome? I cannot afford to go through one more consult with a neurologist who tells me I am not experiencing physiological neurological symptoms, do not have Lyme disease, etc. when the evidence in symptomology and recovery points to this being the case.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
someone sent me a pm a few weeks back with a name, but it is too far for me to travel on my own.
i think the dr. was in ocean cty, nj or near there. if you want the name i can pm it to you
i need to find someone closer. i already drive 3 hours round trip to our llmd (with 3 kids sick i go often) and our pt is 3 hours round trip also.
i guess with all the mistreatment from too many neuros over the last 20 years, i hve developed a special loathing for them.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Gosh.
Please PM me the name, as well as what you've been told.
Thanks, and best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I have a good neurologist. I am in maryland. I will PM you his name. anyone else looking for one in MD let me know, PM me.
Posts: 615 | From maryland | Registered: Oct 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks Roro!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Great letter canbravelyme. Your words are not desperate or angry but convey that you need help and answers. I admire your straightforward approach.
I have a nice neurologist helping me now, but I did not tell him about having Lyme disease, I simply put down that I had encephalitis, which is true, Lyme and Erlichia encephalitis. I have found, as you have, that one mention of the word Lyme sends even the best doctors/neurologists right out the door.
What a world we are shrouded in.
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Hi Lymemom -- I sent you a PM with a fantastic Lyme literate neurologist.
I tried to email you, canbrave, but your box is full.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Guys
I've emptied my mailbox
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
Unregistered
posted
wow cant; a composer!!! happy you were able to do some work lately!!
CBL - finally was able to read your letter in this post(brain works better in evenings) excellent, well written letter.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thank you all for your encouragement about the letter. I'm fed up, so I was as straightforward as possible.
I haven't heard back from the neurologist I faxed it to, but haven't followed up either.
Best Best Wishes to All,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
canbravelyme,
I don't have any names, but wonder if you can get a QEEG or a functional EEG done. Regular EEGs may not show.
I deal with seizures from sounds, vibration, light, motion.
Nothing showed on any EEGs even though I had seizures during them. The technicians always went "ohhh" and "ahhh" but docs all said "get out of my office." - I don't know why.
Anyway, 3 QEEGs showed the seizure activity in the same place during reading and doing math - all done by differnent people (one audiologist; one psychologist; one ND with parameters of Dr. Myra Preston's work with CFS brains).
The final one, done with Dr. Preston's patented test for CFS brains, showed an encel- fa - lo- pa -thy (sorry, can't spell it right now). It was noted that this was likely due to an infection in my brain.
The slow brain waves captured by QEEG are disgarded with regular EEGs but so very relevant.
You can search QEEG, Myra Preston and neurofeedback
- and a book: Symphony in the Brain (Robbins) . . .
now what to do about it ? - for me - is not to take drugs that make my brainwaves even slower - and not to take stuff that stimulates me either as I sense the depleted adrenals also lead to a pre-seizure state (that does happen in adrenal conditions).
the goal would be to clear the infection and retrain the brain (Qi Gong helps).
support with Gotu Kola helps me (you can search it on PubMed). It is not a kola and helps to calm and gently awaken at the same time.
Magnesium is my #1 best anti-seizure medicine (and that also connects the dots regarding both lyme/TBD and the need to detox as magnesium not only protects the brain, it helps detox).
-
Brain training with QEEG was somewhat helpful, but since I never really focused on treating the infection at that time (no doctors - but did what I could with herbs) it was limited.
QiGong training, though, helps tremendously. (Did I already say that?)
I've read of other lyme patients (one or two doctors, even) who had seizures and severe sensitivities who had them all disappear after adequate anti-infective and toxin-reducing measures.
Also a possibility (especially if chemical sensitivies are present) - - Porphyria might also be a player due to overload on the Cytochrome P-450 pathway and resultant excess porphyrins which are toxic.
The American Porphyria Foundation has more information but mostly about genetic porphyrias (there are at least 11 types) . . . There is a list of drugs that use the C P-450 pathway to avoid if porphyria is present. Beta carotene helps.
Secondary porphyria can occur in toxic conditions or with drugs that are hard on the liver. search the terms at www.immunesupport.com for more info.
Trypophan and 5-HTP can cause trouble if the C P-450 pathway are sluggish. Best to avoid in that case.
Rarely does a doctor know about liver detox let alone, porphryia or secondary porph. Yet, I wonder if many unexplained drug reactions each year in hospitals might be connected. Some people just can't detox as well as desired.
-
I also deal with several inner ear/middle ear (vestibular) dx and my neurologist said the seizures are triggered by that. (and I say, well, it plays into it, triggers it maybe . . . but the cause ??)
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And, as everything is not always lyme, it is good to pursue an neurological evaluation. I agree that only an ILADS-familiar, LL neurologist will do.
From my experience with many regular neurologists, not only was it a waste of time and lots of money, but my medical chart and my character were assaulted. The tests literally damaged my brain from more seizures and no help was offered at all.
One place even kicked me out of a very quiet - and unused - little room to rest afterward. No reason why. I just needed to rest to be able to walk but they kicked me out into the busy waiting room where - guess what happened again? They were ever so glad when the taxi rolled up to scoop me off the pavement.
Even after I had the positive TBD tests, neurologists were awful. But I can't tolerate the drugs, so I gave up on that route.
I've gone into (scattered) detail here in case you have similar connections that contribute to your neurological symptoms.
Alan Gaby has an abstract at PubMed: Natural approaches to epilepsy. 2007
and www.vrp.com - at their library has a very long article on seizures - very involved information regarding nutrients, especially NMDA/GABA stuff.
I hope you find a true doctor who can help. Some have to be out there.
Hey, I'd love to know how this works out - and I wouldn't mind the name of a LL neuro, maybe even to read what they may have published. Even if one popped up in my town, the waiting rooms are mine fields for me so I learn what I can on my own.
Good luck.
--
[ 13. June 2008, 12:45 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Greetings! I joined this forum a couple of days ago and am finding it comforting to know that I am not crazy.
I have a child with neurological symptoms: migraines dizziness, balance problems, disoriented and POTS. Hasn't been able to attend school the last 6 months!
The IgG and IgM (Western Blot, performed at one of the big standard labs) were negative. I haven't been able to convince the neurologist to order more in depth screening such as a PCR. The neuro thinks I'm "off-the-deep-end" on this.
Would love to find an LLMD in North NJ to get a thorough set of tests performed. Not much luck as yet.
Best wishes to all of you on your roads to recovery!
Posts: 170 | From New Jersey | Registered: Jun 2008
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