posted
Did anyone have abnormal EEG results because of neuro lyme?
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
No...my EEG was normal. My brain spect, however, was abnormal. I also had a suggestion of "bilateral cortical atrophy of the parietal lobes" on my MRI.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Why you ask matters in how I might respond. Bottom line, if you are going to get an EEG done, ask your LLMD to refer you to a LL neurologist.
An EEG cannot show all we would like it to show, not by a long shot.
A QEEG is a far better test for lyme patients but that is usually done by Ph.D.s, not neurologist. Just google: QEEG or "brain mapping"
You might be able to get a "Functional EEG" in the regular world of medicine. Much better than the typical EEG for patients with fatigue issues who have possible seizures.
I had several EEGs that were interpreted as "normal" although seizures zapped me during them. They said the movement messed up the results. But, I had gone to a neurologist (who I later found out) was totally against lyme and did not believe anyone could have the array of symptoms that I had at that time.
After 3 or 4 "normal" EEGs over the years (with nearly all the technicians telling me I have "very slow brain waves" but the doctors would not consider that) . . . I had 2 abnormal QEEGs that did show severely slow brain waves and then sudden bursts, causing seizure activity.
Two different QEEGs over two years' time, one by an audiologist and one by a psychologist whose specialty was autism - well, both QEEGs, independently, showed the same results from the same part of my brain when I had seizures during the tests (triggered by some sudden noise outside of the office).
And, still, bottom line is to first see a LLMD. I see that you just posted a few days ago to find one. Forget all other doctors until you can get advice from a LLMD. Lyme patients have VERY, VERY different presentations than the kind of patients that most doctors are used to seeing.
They just don't know what to do then but say the test was "inconclusive" or the off the chart readings must be due to faulty equipment or "artifact" or electrical "noise" from the machine, not from my brain.
You also need to know that lyme often affects the inner ear and the inner ear can really interfere with brain waves but that will not necessarily show on an EEG. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had a very abnormal QEEG. There was a PHD down the hall from Dr. Cheney's office years ago and she wanted to study his patients. 98% of his patients had very abnormal QEEG's. She did a very lengthy research paper on it and it was going to be published in a very respected medical journal. They asked her to make the report a little less lengthy. To make a long story short the medical board decided to nix the idea as they didn't want to validify her findings on CFS which we know today is Lyme in the majority of cases. Her name is Dr. Myra Preston and you can google her and read more about her brain mapping.
Posts: 805 | From Utopia | Registered: Feb 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One of my QEEGs was --- oh, now I remember I had 3, not 2 done.
All were the same and showed major deficients. In addition to the QEEGs done by an audiologist and one by a Ph.D. who worked with autistic kids, I also had the one done to the details of Myra Preston's work.
While a ND (naturopathic doctor) in a an adjoining state had been trained by her and did the QEEG with her equipment, Dr. Preston actually wrote the report and stated that my brain waves were consistent with late stage lyme.
Her work in this field is very impressive and does show slow brain waves to be connected with brain fog and fatigue, with the likely cause an encephalopathy (from neuroborrelia or other stealth infection).
Of course, no MD in my state cared to even really consider any of this but it sure confirmed (to me) that I was not just imagining all this and that the EEGs had all been Mickey-Mouse tests (in my case). Not just that the tests were incapable of determining the extent of the difficulties but that they were not interpreted correctly, either.
Bottom line: all the other tests in the world are not nearly as important as addressing the cause - neuroborreliosis. A good LLMD should be the first step in this journey.
I wish I had saved the money I spent on QEEGs and used to get treatment. Oh, while insurance (at that time, BCBS) said they would pay for the one with the audiologist, turns out they refused. It was a terribly mortifying experience as the audiologist was furious with me. I did have to pay for the other two, out of pocket, in advance. Oh, it was good confirmation for me on paper but, in the end, I had already known everything the tests told me.
I did QEEG Neurofeedback for a many months - with only minor help because I'd been unable to find a LLMD and get treatment.
Finally, the Ph.D. (Autism specialist) doing the QEEG Neurofeedback told me he did not think it would help as long as there was an infection in my brain. An infected brain can't be retrained. The infection first has to be addressed. -
[ 06-12-2010, 05:26 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The neurologist told me my EEG was normal. I say it that way because I don't trust the man. So, since I never was given a report of the EEG, who knows if it was really normal or not.
My brain scan was not normal. It said "lyme cannot be ruled out." It showed that I had 2 UBOs (unidentified bright objects)--which is what lyme does. And yet the neuro yelled at me that I did not have lyme in my brain.
He must know everything like God, right?
Wrong. What he knows is that he is determined never to diagnose someone with lyme disease, even if they have a positive blood test for lyme from LabCorp like I had and 2 lesions in their brain!!
Instead, he ordered a spinal tap and EEG so that he could say I DIDN'T have lyme.
Most neuros have this same agenda, so I suggest to all lymies that they stay far away from that specialty.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And adding to TF's note about staying away from neurologists - to be crystal clear about spinal taps - also stay far away from spinal taps (lumbar punctures). They are NOT a good test for lyme but do line doctors' pockets (and all involved in the test) -- and are used to deny treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was just wondering because I had one scheduled before I ever thought of the possibility of lyme, and I had it done yesterday; I was just wondering what kinds of things it could show.
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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posted
A neurologist ordered an EEG on me. During the test, the technician said "Just so you know, there is another EEG that is 24 hrs" (or something like that, hinting at the need for further evaluation)
The neuro declared the EEG normal. Said the only way to rule out Lyme was to do a spinal tap, since my blood was negative.
I've learned a lot since then...
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
The doctors thought initially that I had epilepsy. I was put in Johns Hopkins under 24 hour/day EEG for 6 days. Nothing abnormal.
I had/have terrible neuro lyme.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- illusion91,
Don't expect too much, especially as most neurologists will bend over backwards to discount any kind of brain effects from lyme. You really do want this to come back okay, though. But, if it does not, ask your LLMD for interpretation and suggestions for specific treatment.
An EEG cannot tell us everything. Still, in general terms, here is a very basic definition of EEG: -------
EEG has several limitations. Most important is its poor spatial resolution.
EEG is most sensitive to a particular set of post-synaptic potentials: those generated in superficial layers of the cortex, on the crests of gyri directly abutting the skull and radial to the skull.
Dendrites, which are deeper in the cortex, inside sulci, in midline or deep structures (such as the cingulate gyrus or hippocampus), or producing currents that are tangential to the skull, have far less contribution to the EEG signal.
The meninges, cerebrospinal fluid and skull "smear" the EEG signal, obscuring its intracranial source.
It is mathematically impossible to reconstruct a unique intracranial current source for a given EEG signal[2], as some currents produce potentials that cancel each other out. This is referred to as the inverse problem. . . . -
[ 06-13-2010, 02:00 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have had many EEG's and 2 VEEG's (video), one VEEG was 2 days and the other 5 days (long and boring).
My EEG's showed slowing in the L. temporal lobe, which I was told meant dysfunctional. The 24 hr. VEEG showed some spiking, but I don't think it was much. I was diagnosed with epilepsy by an epileptologist.
I had a textbook complex partial seizure, but with all the many drs. I saw for add'l opinions they were very divided. The ER dr. said syncope and so did all the cardios, the neuros - a couple just went a long with the epi. and others said syncope.
The epi. that did the 5 day VEEG cleared me of epilepsy and said he wasn't convinced I ever had it. I got a letter to expunge it from my driving record.
(As far as MRI's go, I have a few lesions.)
liz
PS All of the EEG's were before my Lyme diagnosis.
Posts: 471 | From NJ | Registered: May 2009
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posted
I've never had an EEG. Judging from other tests I've had done and what everyone has written, here, I'd approach this by seeing it as not something that can rule in or out TBI, but as something that can rule out other things that an EEG can be used to rule out. So, going down the road, when you wonder, could it be this ____; or if another practitioner says, "have you looked at ___," you know you already have.
I've investigated so many causes for my symptoms over the years. Now that I'm treating Lyme, it's so helpful to have already ruled out so many other things.
So, for instance, if the result comes back negative, it might be helpful to ask, "so, given my symptoms, what sort of conditions does this rule out?" Then you can avoid any debates, but still find a use for the test.
Posts: 252 | From New York | Registered: Apr 2010
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posted
I had an abnormal EEG. My neurologist said it didn't resemble anything they were familiar with, so blamed it on my antidepressant, but I know now that it was from Lyme.
Posts: 975 | From California | Registered: Apr 2007
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posted
I had a +CSF to lyme, my eeg was abnormal slowing and then sharp spikes or something, drs then said I had frontal lobe temporal partial complex seizures. I am unsure if they found them on the EEG or thru the episodes I'd get.
Posts: 11 | From NJ | Registered: Jun 2010
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posted
I'm talking to the doctor tomorrow and getting back a bunch of test results; if anything exciting comes up, I'll let you guys know. Thanks for all the input!
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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posted
As expected, the neurologist said every thing was normal and there is nothing wrong with my nerves; whatever symptoms I'm having must be a connective tissue problem. When I asked about lyme disease, he said that I would have tested positive if I had it...(obviously he knows very little about this disease). Definitely making LLMD calls tomorrow!
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, at least, it's good that you were prepared about the lack of most neurologists' knowledge so that you weren't as shocked as many of us have been in such appointments.
It's good that it helped rule out a short-circuiting toaster in your brain, so to speak. However, the neurologist should know that a good EEG cannot declare someone free of all nervous system or nerve fiber (or even nerve conduction) problems.
I hope you can find a good ILADS-educated LLMD soon. I see that you have already posted in "seeking a doctor" -- also ask at all the area lyme support groups within a reasonable radius or where you have friends or family with whom you could stay overnight.
In the meantime, here are some links you can save to your computer file for reference. Good luck.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=====================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Find Lyme Support Groups -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A LLMD is clearly best to consult next. However, just for information, here are just two links detailing how much better a QEEG is, in many cases. It's not that you need one but, just to show the reach of it in explaining what can be going on that an EEG misses.
=========================
For those with conditions and infections that result in profound, deep and debilitating fatigue, brain fog, and a range of other neurological dysfunctions:
Quantitative EEG (QEEG) and Neurotherapy Fact Sheet -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- An EEG will not capture symptoms explained here -but a QEEG can. Still, it's extremely helpful to see that others have studied the very stuff that knocks us down and there are explanations - and with treatment - possible improvement.
. . . Attempts to indulge avocational or vocational pursuits is frequently interdicted by either the languor of Lyme or by encephalopathy. . . .
. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .
. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .
. . . Incidentally, hyperaccusis (sound sensitivity) can be a feature of VII neuritis. . . .
. . . Eye related problems in LD are commonplace . . . .
. . . disorganization, an inability to follow a train of thought . . . .
. . . Others forgot how to spell even simple words, how to read or must re-read with varying degrees of comprehension. One patient drove to Philadelphia instead of the desired Princeton destination because the initial letters were identical and confused him.
After shopping for groceries, another patient placed her shoes in the refrigerator and stored the food in the clothes closet.
Lyme patients can lose their way home or on the way to work, bypassing otherwise familiar exits or plain forgetting where they are in time and space or how they got there. This is known as topographical disorientation or environmental agnosia. . . .
The Human Side of Lyme - An Inhumane Disease of the Brain
===================
illusion91,
Now, none of this is meant to scare you. Really. But if you are anything like many of us here, the uncertainty can be far more frightening than reading about how a myriad of symptoms actually does make sense, in light of it all.
Also vital to keep in mind, knowledge is power. It offers direction and empowers us. I know that's a worn clich� but it really is something to remember in all times of fear or uncertainty. Knowledge, indeed, is a beacon of light.
Good luck and take really good care of yourself. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for all of your help guys! I'm going to see an LLMD in a week! hopefully he will not say such things as "well I think an MRI would be a better test than a SPECT..."
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- His choice of test would be based on your symptoms. Each test has advantages and disadvantages. He will need to first evaluate before asking for more tests. But, really, you may not need either MRI or a SPECT. Our bodies provide so much detail.
Seeing you in person; watching how you walk, sit, move; hearing your speech pattern; interacting with you; seeing your history and symptoms listed on the questionnaire -- all that will tell the LLMD so much that most other doctors totally miss.
Just be yourself. If this is an ILADS-educated LLMD (even if he has his own approach, he's got the science background from ILADS' writings, conferences, etc.) . . . he should be able to offer you good diagnostics, insight and guidance.
Just be yourself and know that every LLMD has heard symptoms that we never even knew could be - so the typical judgment of most other doctors just is not even an issue with a LLMD. So you can be open and honest when explaining your symptoms and in your questions.
You can clear your concerns - or any agenda of hoping he finds this or doesn't find that. You want him to see the truth. You want to know what HE thinks. So, just be yourself. Just be there - in the moment - and just breathe. There is a certain relaxation in that. -
[ 06-15-2010, 02:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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