Seizures

[Guest guest]

, I

have had seizures since day one of lyme. Of course everyone just thought I was nuts.

I was having them in my sleep and would

wake up brushed from banging my arms on the night stand. I had no idea what was happening. If you have an hmo, chances are your doctor

is trying to limit the number of test he orders. I had my first eeg in 1999, it came back negative and this was

during my most active seizure period. In 2000, I saw a different neuro, the EEG came up positive. After 3 months of medication, I had

another eeg and it was again positive. The seizures have really hurt my

brain. It has caused severe memory

loss and cognitive difficulties. The

lyme started these stupid seizures and I think most lymies have them. my seizures are not grand mal, in fact

you would never guess I am having one.

They occur deep within my brain and cause strange smells and exhaustion

and numbness in my face and really bad migraines. A strange feeling comes all

over me during the seizure and I have burned my hand in the oven while having

one among other things. Its like I

go somewhere for a while and am not at all functioning even though I don’t loose

consciousness All of these

symptoms are also symptoms of neurological lyme and that is what I have. Although I am on anti seizure

meds, I am still having them.

roe

[Guest guest]

Mine are very similiear I believe....It makes me wonder if that is part of why I am always dropping things...I can remember as far back to my CNA days...one day I dropped a cup of water all over an elderly client...I am very clumsy. But it is like I see it happening but can't do anything about it...I have thankfully never done anything like burn myself or something...

My muscles spasm a lot...probably from previous unknown seizures...I will have a better talk with my doctor about all this...thanks roe for your comment.s

I think I will defenitely have to change my Off of the Prozac...I get tired with my sleeping pill but am having fitful sleep...husband says I talk, moan and toss all night...I feel very tired...No restful sleep for three nights now....I usually at least feel a little rested.

Cyntha Landon

, I have had seizures since day one of lyme.

[Guest guest]

I also dropped things a lot and walked into walls, I still do. my perception of space is way off. I have also poured water into a glass,

and kept pouring until it was everywhere!

I have learned to be more careful.

When I told my neuro about my hand not working, and waking up with it

numb, she tested for carpel tunnel syndrome and it came back positive, so now I

wear a brace at night. All of this

stems from lyme, she also ruled out MS.

These are symptoms of lyme.

I am on Paxil. It is the

only antidepressant that has helped over the past three years and counting of

hell.

Sleep? I have not had a

good nights sleep in three years. I

have been on ambian for the last 2.

most nights I have to take one just to get to sleep. But I never feel rested. I am always

tired, but at least the ambian helps me get some down time. before the ambian, I slept at most 2

hours a night and it was fitful and full of horrible nightmares.

Good luck

roe

[Guest guest]

Dear ,

One of the major symptoms of Lyme is spastic paraparis (partial paralysis due to muscle spasm). Muscle spasms are not unusual.

Sleeping pills as with any artificially induced sleep does not get the body into REM sleep thereby depriving the body of the rest time need for recovery. This goes for alcohol etc.

Hope this helps.

Larry NV

[Guest guest]

<snip>

Roe, I wonder if the IV ABX might help

you even more than the anti-seizure

meds. I mean take BOTH together, please don't think I'm suggesting you

stop

the anti-seizure meds. My doctors insist that I continue on anti-seizure

meds even tho I'm no longer having grand mals, so I suppose it's just too

risky to stop.

a, my insurance company will not

pay for my IV! My llmd wants me

back on IV, he knows it is the only way to clear up the neuro symptoms, my last

lyme test was negative by CDC standards.

So, my doctor says he cant fight for the IV. I have had 4 rounds of IV since 1999, last round was a year

ago. I know its time. I just don’t have the energy to fight

right now, and if I thought it was a cure, I guess I would fight harder. But my insurance company will only

cover 4 weeks, so whets the point?

roe

[Guest guest]

In a message dated 4/7/2001 8:33:18 AM Eastern Daylight Time, roe325@... writes:

! My llmd wants me back on IV, he knows it is the only way to clear up the neuro symptoms,

Dear Roe,

I've clipped only a bit of what you wrote.

I agree that only 4 weeks on IV ABX is probably not enuf.

I suggest you look into the free med programs, others here can supply you with the links.

Also, just because your current Lyme tests are negative, that doesn't mean that future tests will still be negative. It's the symptoms that count most anyway.

I've had to dig deep into my own savings to fund my Lyme treatment.

Hugs,

a

[Guest guest]

Ohhh, somebody else not sleeping?

I have a question, is this pain you have all over an ache or pain when

you move? I am feeling good and I hate to ruin this and go to bed as I

hate the start of the day as probably it won't be near as good as it was

today although I do now have two good days in a row.

Coleen

nne wrote:

a,

I have an appointment today, and as much as I hate the IV, I think the

time has come, I have pain in every part of my body and seem to be getting

worse and worse. I just need him to fight for me with my insurance company.If

insurance does not approve I will look into the free medical program you

are talking about.

roe

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[Guest guest]

a, I

have an appointment today, and as much as I hate the IV, I think the time has

come, I have pain in every part of my body and seem to be getting worse and

worse. I just need him to fight for me with my insurance company. If insurance does not approve I will

look into the free medical program you are talking about.

roe

[Guest guest]

In a message dated 4/10/2001 6:42:14 AM Eastern Daylight Time, roe325@... writes:

and as much as I hate the IV, I think the time has come, I have pain in every part of my body

Dear Roe,

Good luck!!

I hope all this pain will be a distant memory for you soon.

Please keep us posted.

Hugs, a

[Guest guest]

Hi ,

I can understand you overlooking something, with all the posts that appear each

day. And, I can understand your being nervous about the upcoming IV therapy,

too. On that, rest assured things will go just fine.

In my post on seizures, I promised to write about my personal experience with

seizures in a separate post. I'm still trying to compile my rememberance of

personal experiences, since I haven't had one since 1997...although I HAVE had

some " auras. " I have learned to keep seizure auras from progessing, and to

modify my lifestyle to not put myself in a seizure-producing situation.

Although, in reading my own compilation on seizure activity, I think I may be

having some different types of seizures that I haven't had before lately. I see

my LLMD tomorrow, so I will discuss it with him.

When I lay in bed at night, I have sudden involuntary twitching of the arms and

hands. Sometimes it wakes me up, and sometimes it is so violent that I slap

in the process. Other times I feel like I'm falling, and I sit up real

fast to keep myself from doing so. If I lean back just a little bit in the

recliner, this also happens. I cannot tilt back more than a certain amount

without this feeling, and without nodding right off to sleep....which drives me

crazy when I'm trying to watch something interesting on TV. If I'm situated at a

slightly more vertical position, this does not happen. Same thing in bed. I have

to lay on my side to watch TV in bed...can't be on my back, even propped up with

pillows.

I hadn't thought of this as seizure activity before, so I will ask my doctor.

It's a weird, nauseating feeling. I promise I will get back to you on my seizure

experience. That's how I first was diagnosed with Lyme....seizures were my first

indications. I had been seeing my M.D. for about 6 months because of weird

happenings, and she had done all kinds of tests. When I nearly passed out

driving to work one day during a heavy rainstorm with flooding, she sent me to

see Dr. M...and I never went back to work. He initially diagnosed encephalitis,

temporal lobe epilepsy, and treated for that. Six months later we tested for

Lyme. That's it in a nutshell. Will expand later.

Love ya,

Rose

Sloane <jsloane@...> wrote: Dear Rose, How on earth did I

miss this posting? Good Grief! I can't tell my elbow from my ... today! I was

not on the computer all day yesterday, but of course that does not explain

Saturday! I'm experiencing a lot of nervousness about his upcoming IV. Didn't

realize PICC line inserted so far! Duh! Another concept I missed!

posted a lovely e-mail explaining the process, as she experienced it and now I

can't find that posting either! At any rate, THANK YOU for sending me this

information about seizures. If you wrote again, I must have missed it! ACK!

Love,

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*Websites*

http://www.angelfire.com/tx3/RoseWriter or

http://www.angelfire.com/biz/romarkaraoke/james.html

---------------------------------

[Guest guest]

In a message dated 3/5/2002 3:38:58 PM Eastern Standard Time,

toil_for_lyme@... writes:

> That's how I first was diagnosed with Lyme....seizures were my first

> indications.

Hi Rose,

I had been having seizures too, long before my Lyme diagnosis.

Every MD I saw simply didn't have a clue, and didn't seem to wonder why.

Just seizures of unknown origin!!

I cannot understand why they never tested beyond the standard EEG.

Somehow, if I were an MD (I'm not), I just KNOW that if one of my patients

was having seizures, I'd be quite concerned about why, not just shrug it

off.

Hindsight, of course, tells me that I was having " Lyme seizures. "

Ever since IV ABX treatment, I have not had a seizure. I do, however, take

Dilantin as a precaution.

Hugs, a

[Guest guest]

Hi a,

I had never had seizures before 1995, but was experiencing other weird stuff for

about 6 months before my M.D. referred me to Dr. M, our Lyme doctor, who is a

neurologist. My M.D. had done every conceivable blood test that she was capable

of doing, and found nothing out of the ordinary, and strange things were

happening.

In April 1995, I was referred to Dr. M. He diagnosed and treated the

encephalitis and the epilepsy and did MRI's, EEGs, and so many other tests that

I can't remember. When I didn't respond as he felt I should, he tested for Lyme.

I had never heard of Lyme Disease. Actually, I previously said 6 months later I

was tested for Lyme..it was actually only about 3 months later. Six months later

was when I had IV treatment, which helped with so many symptoms, including

seizures.

I haven't had any seizure activity since 1997 to speak of, but I still take

Tegretol 200 XR twice a day, and stay away from situations that could produce a

seizure.

Love ya,

Rose

==========

From: GOODGIRL95@...

Hi Rose,

I had been having seizures too, long before my Lyme

diagnosis.

Every MD I saw simply didn't have a clue, and didn't seem

to wonder why.

Just seizures of unknown origin!!

I cannot understand why they never tested beyond the

standard EEG.

Somehow, if I were an MD (I'm not), I just KNOW that if one

of my patients

was having seizures, I'd be quite concerned about why, not

just shrug it

off.

Hindsight, of course, tells me that I was having " Lyme

seizures. "

Ever since IV ABX treatment, I have not had a seizure. I

do, however, take

Dilantin as a precaution.

Hugs, a

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*Websites*

http://www.angelfire.com/tx3/RoseWriter or

http://www.angelfire.com/biz/romarkaraoke/james.html

---------------------------------

[Guest guest]

Sharon,

This must have been very frightening for you!

It does indeed sound like a seizure. I think it is sounds more like

a complex partial seizure since it was more than just staring (the

typical for petite mal) Complex partial seizures usually involve

just one side of the body and a few other symptoms, not a full

tonic-clonic grand mal.

has complex partial seizures at night and tic like ones in

the daytime (thank goodness they getting more and more rare

now). He also has a diagnosis of autism and LKS.

There are many this that can cause a seizure- abnormal body

chemistry, in particular low magnesium, medications (including

chelaors), illness, fever, bright light, strobe lights, and for our

kids- entering puberty seems to bring it on, etc.

I would have a complete medical workup done, including a full

lab panel, and EEG (sometimes a sleep EEG is necessary for

our kids, especially if they might have subclinical seizure activity-

sometimes a one time seizure doesn't show anything on a

standard EEG).

For some people, a seizure may be a one time occurance

related to something going on in the body at just that moment,

but it may herald more seizures to come.

Feel free to e-mail me off list about this if you want more

information or support.

Ruth, RN, 's mom

> Today my son had what appeared to be a petit mal seizure. He

started with a stare, his left eye started to twitch, then his mouth.

His left arm dropped and he started to drool. His ears turned red.

The whole thing lasted 45 seconds. He was in a post ictal state

for about 5 minutes. He is chelating and this is an off weekend.

He has not had any problems with chelating and has been doing

it for 3 years.

> Any thoughts?? Has anyone else had the same experience??

> Sharon S.

>

>

[Guest guest]

>

> My son's seizures went away on a very low carb paleo diet

(www.paleodiet.com).

> If you read Dr Shaw's books and see his video, he mentions yeast

> overgrowth as a cause of seizures.

>

> This can be a problem with phenols and/or yeast and/or metals

>

> <http://www.danasview.net/phenol.htm>http://www.danasview.net/phenol.htm

>

> http://www.danasview.net/yeast.htm

>

> <http://www.danasview.net/chelate.htm>http://www.danasview.net/chelate.htm

>

>

> > Does chelation help the seizure activity to stop or at least become

> dulled?

>

>

> For many children, yes. You can help in the process by removing

> gluten if he has gluten-related seizures. Enzymes may or may not help

> for that.

>

> Other foods also cause seizures for some kids.

>

> Dana

>

>

>

>

[Guest guest]

I just found out that after 43 years I may not be having seizures after all!!

When I have my so called seizsures, I get extreme stomach pain, get very

nausaus, very hot and go unconscious. Sometimes I can lay down and fight like

crazy to stay conscious and will not go out but still my head will reel and I

almost go out. I've had these episodes since 5 years old and many times at least

once a month. No anti-seizure med has ever worked. Now I find I may have

Vasovagal Reaction or Sycope!! Unbelieveable. And I do an incredible amount of

research on the net! But if you don't know the name of something, you may never

find it. I've been going to neuro's my whole life and have always described

exactly what happens and no one but my newest one has ever suggested anything

else! Maybe this help someone else out there, you never know!!

[Guest guest]

Vickie,

We're 2+ years into chelation with a 19 year old who has had a

seizure hx since age 9. Seizures for her are linked to food-mainly

gluten and casein, although other things cause what I refer to

as 'pre-seizure behavior.' Since we identified the food connection

we've been able to reduce her med(compounded tegretol sr) from 600mg

per day to 100mg at bedtime. We've seen NO increase in seizures

that I can relate to chelation even though we've reduced her

medication slowly during this time. We've gone low dose and slow

with lots of supps as suggested on this list. Feel free to e-mail.

From: " vickiecavender " <vickiecavender@y...>

Date: Wed Feb 25, 2004 6:50 pm

Subject: 11 year old daughter with autism/seizures

Does anyone have any experience with chelation therapy and seizures?

[Guest guest]

Dr. is wonderful, but she does not have all of the answers.

She does focus too much on only parasites and chemicals, when there

are far more reasons for illness.

For seizures, I would try the parasite cleanses of course, but I

would also go to a good chiropractor. To hear about temporary blood

flow problems, it wouldn't be a surprise that there is a structural

problem that could be addressed with an adjustment.

Another reason for seizures could be allergies. My book 'Say

Goodbye to Illness " has an example of a man who suffered seizures

whenever he was in his backyard. It turned out that he was allergic

to the new acacia palm tree he had just planted. A three year old

girl was allergic to egg white, causing her to have a seizure every

time she ate an egg. A teenage boy had epileptic attacks exactly

every two weeks, whenever he went to the beach with his father and

ate a hot dog with mustard. He was very allergic to the mustard.

Two more cases of attacks resulted from apples or chocolate.

The book mentions that blockages in the stomach meridian can cause

all sorts of symptoms, and one of them can be seizures. The

emotional part of your recent seizure is not a coincidence. The

emotions must play a substantial part in whatever causes your

seizures. There can be physical level or emotional level blockages

in the meridians apparently, and meridians can be undercharged or

overcharged, according to this book.... not that I know a lot about

Eastern medicine.

Greatly improving one's diet and adding supplements is always an

excellent idea, but sometimes more is needed. I've discovered

through NAET that I am chronically low in zinc and all sorts of

nutrients, even though I supplement, (my body is allergic to a lot

of foods and rejects a lot of the components of the food, including

some of the nutrients) so not surprisingly my immune system is not

as strong as it should be. When it can't fight as well as it

should, that allows potential pathogens to take hold that otherwise

couldn't have.

[Guest guest]

Could you explain please what you mean by this? What are

the 'magnesium dependent amino acid breakdowns' that you targeted

for safe treatment? Thanks.

>>>kept him on continuous magnesium until his amino acid and blood

tests showed

that the magnesium-dependent amino acid breakdowns were occuring

correctly. He

also needed longer breaks between chelation rounds.<<<

[Guest guest]

In a message dated 6/7/2004 9:16:56 AM Central Standard Time,

mbrookh@... writes:

Could you explain please what you mean by this? What are

the 'magnesium dependent amino acid breakdowns' that you targeted

for safe treatment? Thanks.

>>>kept him on continuous magnesium until his amino acid and blood

tests showed

that the magnesium-dependent amino acid breakdowns were occuring

correctly. He

also needed longer breaks between chelation rounds.<<<

Ok, searching into the very old archives of me feeble brain here but years

ago we ran regular blood and urine Amino Acid tests through Doctor's Data Labs.

On these tests, my son continuously showed a breakdown in processing methione

and one other amino acid I don't recall offhand (very elevated levels of one

of the mid-way products in the body's conversion of the two). Both of which

are magnesium-dependent. Supplementing Mag showed movement towards fixing this

process but it didn't get totally fixed until well into chelation and several

treatments for such using a funky form of NAET our chiropracter does.

These tests also showed a particular Amino Acid (taurine? I think) very low

which Owens said she sees often in seizure-prone autistic kids.

It was an interesting test to follow which I'd recommend to run at least

once, especially in toxic kids. From the test, they can recommend a specific

supplement that can be compounded for the individual. Our insurance paid for

these supplements for almost two years. Looking back, his individual

preparation

was pretty similar to Pfieffer's preparation they claim chelates.

Gaylen

[Guest guest]

,

Seizures have been in our daughter's life since she was nine,

becoming more frequent and not well controlled by medication. GFCF

has controlled them well. This dietary link lead us to the mercury

connection. We've been chelating for 2.5 years and have seen no

seizure response that I can attribute to chelation. We've used the

protocol recommended here, low and slow. One of our grandchildren

also had everal rounds using DMSA without incidence.

>>>From: " Hensley " <ahensley11@c...>

Date: Sun Jun 13, 2004 8:09 pm

Subject: Seizures a side effect of DMSA?

I just got my DMSA from Kirkmans and I read that seizures can be a

side

effect! EeK! Is that common? Is it just put in there to cover their

butts? I don't remember many people talking about seizures. Thank

you.

This has increased my nervousness. We are going to start on Thursday.

Mom to 2 beautiful blue eyed boys - Noah (4, pdd and verbal apraxia)

and

Luke (1, NT and unvaccinated)<<<

[Guest guest]

BOB YOU BE CAREFUL OK ,MARK HOGUE

okdust@... wrote:

Mark and all --thanks for your comments, my urinalyses (sp?) did show that i

needed to drink more water or perhaps gatorade, but never dreamed this could

bring on a seizure.I spent 3 days in the hospital and all tests came back

normal ,hopefully you hit the nail on the head--That's why lists like this are

so great, people helping people.Thanks again -----Bob V. in Naples fl.

[Guest guest]

My last seizure - which was almost 2 yrs ago - was caused by dehydration.

I ended up with a concussion.......

snookdust@... wrote:

Mark and all --thanks for your comments, my urinalyses (sp?) did show that i

needed to drink more water or perhaps gatorade, but never dreamed this could

bring on a seizure.I spent 3 days in the hospital and all tests came back

normal ,hopefully you hit the nail on the head--That's why lists like this are

so great, people helping people.Thanks again -----Bob V. in Naples fl.

[Guest guest]

Did your daughter have a 24 hour EEG? If she only had a two hour EEG

they could have missed some seizure activity. Seizures are most

likely to occur when a child is falling alseep on waking up, This is

the best the time to watch for seizures.

Donna

> Hi I have a question for anyone..Our Daughter Machaela had a

seizure

> on saturday night at 9pm, this has never happened before..she also

> had another one at 600am on sunday morning..the second one was

very

> mild..Im wondering if anyone can tell me a good place to look for

> information on this..her pediatric neurologic says that he will

> count this only as one seizure as it was her first one and

happened

> within 24hr period of time it was sort of a cluster effect..she

was

> hospitalized for 2 night and is home now..we decided not to use

anti

> seizure medication as it was her first one..we also did a eeg but

> she had to be sediated and the sediation they used is also anti

> seizure med..but we used the least amout of med we could and we

hope

> that it has some accurate reading..Has this happened to others and

> can anyone? Im so worried and scared for her...Should I continue

> with the chelation and her other supplements?

> Thanks in advance..

>

[Guest guest]

Check her taurine levels. Many mercury-toxic children are low in taurine

and this leads to seizures. If you are moving mercury, the taurine levels

may be affected.

Our son was tested and his taurine was low, so we have supplemented him and

not seen much of seizures since.

Barb

[ ] seizures

> Hi I have a question for anyone..Our Daughter Machaela had a seizure

> on saturday night at 9pm, this has never happened before..she also

> had another one at 600am on sunday morning..the second one was very

> mild..Im wondering if anyone can tell me a good place to look for

> information on this..her pediatric neurologic says that he will

> count this only as one seizure as it was her first one and happened

> within 24hr period of time it was sort of a cluster effect..she was

> hospitalized for 2 night and is home now..we decided not to use anti

> seizure medication as it was her first one..we also did a eeg but

> she had to be sediated and the sediation they used is also anti

> seizure med..but we used the least amout of med we could and we hope

> that it has some accurate reading..Has this happened to others and

> can anyone? Im so worried and scared for her...Should I continue

> with the chelation and her other supplements?

> Thanks in advance..

>

>

>

>

>

> =======================================================

>

[Guest guest]

You didn't mention how old she is but if she has reached puberty

there seems to be a connection for girls with hormonal fluctuations

causing seizures at various times of the month. Progesterone helps

this. You can look into Catamenial (sp?) seizures.

Michele

> Check her taurine levels. Many mercury-toxic children are low in

taurine

> and this leads to seizures. If you are moving mercury, the taurine

levels

> may be affected.

> Our son was tested and his taurine was low, so we have supplemented

him and

> not seen much of seizures since.

>

> Barb

> [ ] seizures

>

>

> > Hi I have a question for anyone..Our Daughter Machaela had a

seizure

> > on saturday night at 9pm, this has never happened before..she also

> > had another one at 600am on sunday morning..the second one was

very

> > mild..Im wondering if anyone can tell me a good place to look for

> > information on this..her pediatric neurologic says that he will

> > count this only as one seizure as it was her first one and

happened

> > within 24hr period of time it was sort of a cluster effect..she

was

> > hospitalized for 2 night and is home now..we decided not to use

anti

> > seizure medication as it was her first one..we also did a eeg but

> > she had to be sediated and the sediation they used is also anti

> > seizure med..but we used the least amout of med we could and we

hope

> > that it has some accurate reading..Has this happened to others and

> > can anyone? Im so worried and scared for her...Should I continue

> > with the chelation and her other supplements?

> > Thanks in advance..

> >

> >

> >

> >

> >

> > =======================================================

> >