posted
I now am starting with seizures. I had one yesterday am, lasting about one minute and again this morning for about 30 seconds. Felt the electrical activityin the head and extremities jerk. I was a nurse and took care of kids with seizures so I know what it was. Just very sad. Didnt count on this one. Has anyone else experienced this? anticonvulsants or antibiotics - anybody have any good combinations or advise? Thanks to all of you on this board.
Posts: 719 | From Delaware | Registered: Jan 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Ice Skater,
I'm so sorry to hear you are going through this. I have a friend who has gone through it to and I know it scared her to death. She thought it was something besides the Lyme, but it wasn't.
I'll try to contact her and see what she has to say. She's currently out of town for treatment. Maybe I can get her to show her face here again, who knows. If I hear anything from her I'll let you know,
Take care!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Iceskater
sorry to hear about the seizures. I had siezure like activity when I was herxing from an abx combo.
Pretty scary. I only get them now from some times taking tranilizer type meds.
I think it shorts circuts my wiring in my brain.
Neurolyme can cause this. And have read a few posts from people that have a problem with this. I did a search here once and came up with alot of former posts.
Sorry I couldn't be more helpful. Hopefully some one with better experience will come along soon
posted
Can't remember if you have been treated for Babesia or not -- in my opinion this probably is what causes at least 50 % of the seizure-like activity for hubby.
He tried 5 or 6 different seizure meds with no success. Has been stuck using IV Ativan on daily basis for last 3 years.
Some of his EEG's were abnormal, but did not show seizure spikes.
Definite triggers for him -- obviously change in antibiotics is a major one. Otherwise eating and sleeping and in the past movement -- can't exactly avoid those activities.
His daily seizure-like episodes follow a pattern -- almost like clockwork -- worst times are 2-5pm and 1-3am. There probably is a connection to liver/gallbladder function and related toxicity involved.
There used to be 2 types of episodes -- what I called seizures which included loss of consciousness with occasional loss of bladder or bowel control and post-ictal fatigue and confusion and what I simply called shaking episodes which were less severe.
Now for the most part he has less severe episodes that I simply call seizure-like episodes.
Not an easy symptom to control and not one that many neuros will help with unless your EEG shows seizure spikes.
My advice would be to take all the antioxidants and blood flow enhancers you can -- includes COQ10 (400 mg minimum), Resveratrol (Japanese knotweed source), pycnogenol (pine bark extract), phosphatidylcholine, gingko, vinpocetine, possible feverfew or butterbur (both used for migraines).
Also heparin, nattokinase, lumbrokinase, Wobenzyme or something for hypercoagulation.
Also might consider IV Vitamin C and/or IV magnesium.
Hubby does do better when we can afford all these supplements.
This is not medical advice, but just my opinion based on experiences with hubby.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol B
Unregistered
posted
Hey Iceskater- seizures were the final straw in my decision to seek out an LLMD.
Had to stop the dominoes from falling in a two year long deterioration-and to have a neurologist diagnose seizures on top of all the other diverse symptoms that had piled up is what motivated me to say ENOUGH IS ENOUGH.
Mine are diagnosed as complex partial mixed-not the grand mal flop around on the floor type. I am taking Keppra 500 mg 3 times a day- and noticed an immediate improvement.
I may have to take anti convulsants for the rest of my life-or maybe since i am being treated for lyme now I will be able to get off them eventually.
Haven't been tested for BArt yet-but LLMD said Bart causes seizures-so that's my next test-for Bartinella.Actually local lab did come back neg. for bart but doc wants to send blood work to Calif.
local lab also came back neg for lyme, but calif came back Positive positive.
Truly freaked me out at first-but am gratetful the Keppra is helping.
So yeah- I know how you are feeling -has taken me a while to get used to all this lyme related misery.
BTW- whenever I lose my balance and fall I feel like I am skating on ice in patent leather shoes ! Are you really an ice skater-or is your knickname inspired by lyme ?
posted
I had two early petit mal seizures, one before treatment started and another after (herx), none since then. EEG abnormal at the time, haven't had another test since then. Have you had an EEG? At least in my case, it was a treatable symptom.
Posts: 8430 | From Not available | Registered: Oct 2000
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
With Mg and Zn low = no block on the glutamate/NMDA receptors = rapid firing (green light). GABA steps up to try to counter (red light). Dopamine is made from GABA...
Bb is taking OUR zinc. It is incorporating it in its outer cell wall ie., Zn+ cholesterol.
As a defensive move, we lose a LOT of Mg...at the very outset (rash) of this disease. Later vitamin E and A drop (which are stored in fat).
Mg is most definitely given to stop seizures. Think about its use (IV doses) to stop the "toxemia" of pregnancy...the seizures that happen within an hour in recovery after infant delivery.
Okay...now for the documentation:
"We know that serotonin has an inhibitory effect on seizures, moderating the effect of glutamate in the synapse. Low serotonin levels must have a great impact on the development and severity of seizures."
"Also, looking at epilepsy as an example, there is even a reason why we would "want" to malabsorb calcium. In the case of seizures, glutamate is the "gun" but calcium is the "bullet"."
"Excess glutamate at the synapse triggers the seizure but it is the influx of calcium into the cell that actually causes the seizure. The same foods that are LOADED with glutamate actually block the absorption of calcium. How cool is that to see?"
Serotonin is a neurotransmitter that is made from NUTRIENTS. It comes from tryptophan and Mg and B6 plus a few other nutrients (I'd have to pull a file)...
When Mg leaves the cell, Ca goes in...
The Na-K pump is also effected.
Depakote, a drug used to stop seizures, works by increasing GABA AND blocking Na.
It all comes down to the nutrients.
The pathogens...all of them...are parasites. They take from us nutrients we need. Nutrients we need to fight.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
Carol, Iceskater was a professional iceskater before this all became this severe she has told me! She really misses the ice.....
posted
Thank you for all of your responses and wonderful help. It makes the road a little less scary and ideals on how to approach things. Many thanks again.
Posts: 719 | From Delaware | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
how you doing today iceskater?
Have you talked to your doc yet?
Have you tryed upping the mag yet? Mag glutinate works really well.
Please let us know what she has to say as far as treatment goes.
Hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi iceskater,
I am so sorry you have to go through all of this. I hope you find a way to stop the seizures.
I can't imagine how scary it must be to have them... and then worry if you are going to have one.
posted
Hi Ice Skater - Sorry to hear about your seizures. I used to have them quite badly - mostly at night trying to sleep, but also when conscious. They were never diagnosed as being seizures outright, but at the time I was dealing with non LLMDs and they did an MRI and found nothing. Went to an LLMD finally and he diagnosed them as being something that I can't remember. Never had a SPECT.
Basically it was vertigo combined with losses of consciousness and an eletrical short- circuiting type thing in the brain. When I tried to sleep it wouold become the short circuiting which would cause my whole body to convulse and jerk and then it would lead to a coma-like state where I couldn't come awake even though I was conscious.
This got better after abx, and would flare (and still does occassionally) with nex abx. It has been over 10 years since I first became severely ill... but the seizurey activity subsided a lot after the beginning stages of tx. Valium helped, sometimes ativan. K sometimes made me more dizzy even though it is supposed to help with seizures.
I recently flared from taking Noni juice and hadn't had this sx in about 4 years. It lasted for 5 days or so.
So, to make a long story short - yes this is common it seems, and yes it does go away with abx. It will get worse when you first start them and with herxes, until it is finally (hopefully) completely gone.
Good luck. It will get better.
-------------------- sara ryan Posts: 13 | From Venice, CA | Registered: Jan 2003
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liz28
Unregistered
posted
For me, the seizures were babesia symptoms.
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Sparky
Unregistered
posted
Yes...first one triggered by heat/sun when laying on beach at Tahoe.
Had one while sleeping, became a dream that I was having a seizure and a group of faces were peering down at me. They were saying "he's having a seizure', then all of a sudden my vision began to dim and it felt like I was being drawn backwards away from the peering faces.
The faces collectively expressed horror as they recognized I was dying.
I woke up and was lying on my back with my hands and forearms curled up like a paralyzed handicapped person in a wheelchair (rheumatoid arthritis?). Laying and twitching on my back like that and my hands all curled up like a dead bug!
And that was in my tent with my service dog layig beside me during the winter in Colorado Springs (I'm homeless).
Now you know why I refer to us homeless as roadkill!
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Sparky
Unregistered
posted
would like to hear more on this....
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posted
new and more hyperintense signal flares on mri. So much for healing the lyme in the brain. Will keep everyone posted. Thanks for your support.
Posts: 719 | From Delaware | Registered: Jan 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
skater,
I had seizures for about the first 6 months I was on abx. I also had two incidents of complete paralysis, one of which resulted in a wheelchair trip to the ER (my first and hopefully only experience with that).
In my case, the seizure periods and the paralysis lasted hours, not just minutes.
I have no idea what caused the seizures or the paralysis. I only know that at this point, a year into abx treatment, I am both seizure and paralysis-free.
Maybe that shift was the result of the antibiotics. Maybe it was something else. I do know these were some of my scariest symptoms. I certainly wasn't sorry to see them go.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Sandi, sorry to read you got another bad report; my thoughts & prayers are still headed your way for a miracle restoring what you've lost to date.
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I had three fanting episodes since I started Biaxin on top of Doxy.
My LLMD thought I had had too much flare from ABXs and reduced the dose of both Doxy and Biaxin, and I have been doing okay so far (almost a month from the first episode).
She said that I probably had both seizure and arrhythmia caused by Lyme (flare) and that I needed to see my neurologist for EEG and a cardiologist for consultation and a 30-day cardiac event monitoring.
I did a 48-hour ambulatory EEG followed by a routine EEG about a week and a half ago or so, and I saw a cardiologist last Thursday and started on the monitor.
I don't have the result of my EEGs yet but asked my neuro's office to send the data on a CD in addition to a written report to my LLMD so she could look at the data herself.
The day I started the cardiac event monitor, I had 2 near-fainting episodes at night one after another, which I pushed the reacording button on the monitor for, as I had been instructed.
Well, I need to wait until the 30 day is over to find out what caused my dizziness the other night.
I hope I won't have any more episodes (fainting and dizziness), but for the purpose of finding the possible causes, it might not be a bad thing if I have one or two more?
Anyway, my neurologist was thinking about letting me try Zonegran (seizure medication) for pain, but now I might need to take it for siezures (he told me to wait till he got the EEG results.)
I hope you are feeling better. Take care.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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