RE: my brain is truly fried!

[Guest guest]

roe I too have had seizures...mine come and go. I have only had one grand mal seizure though in January 1999. I usually stare off...many times people can just speak to me and bring me out of it.....so I guess you could say my seizures are mild.

Doctors do not have me on seizure medication. I wonder perhaps if I have some du ring the night. I have had an EEG and thus far doctor doesn't seem concerned. But then again this is Idaho no doctor likes to go out of their way it seems, to help anyone truely.

Love ya all,

Cyntha Landon Idaho

PS trying to get my computer to recognize it's modem so as I don't have to use my moms all the time ...so I can be on more often. Been trying to find a place I can download a Modem hard drive disk so far no luck...((smile)) don't know all the info I need to know about my modem to do it...brain doesn't know which numbers and stuff on modem count...so many of them...lol...I don't want to have to climb any more stairs

[ ] my brain is truly fried!

Hi everyone, first of all I want to apologize for mentioning a doctors name in response to an email that contained that dr.s name. Pepi, I am sorry, I confused you with someone from the group named a! I think! I am not sure. My health has been awful and its hard for me to read. I have a seizure problem, that is getting worse, anyone else have this problem from lyme? I am on a new medication, (keppra) and also 2400 mgs of neurontin and that just makes me a bigger mess than usual. I also have no income at all and I am fighting with LTD and SSD! Ah, the joys of living with lyme!

Thanks for listening, I hope I made some sense!

roe

Welcome to Easy Reference:Send a blank email message to: -Unsubscribe - Unsubscribe from the list -Digest - Switch your subscription to a digest format -Normal - Switch your subscription to normalPlease send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic The archives can be accessed at The chat room is always open! /chat

[Guest guest]

>My health has been awful and its hard for me to read. I have a

> seizure problem, that is getting worse, anyone else have this

problem from

> lyme? I am on a new medication, (keppra) and also 2400 mgs of

neurontin and

> that just makes me a bigger mess than usual.<

Roe, my husband has appeared to have a seizure problem but it doesn't

show up on an EEG for him. He will sometimes stare off, sometimes

his head will drop & he nods off, mid-conversation etc... He was on

neurontin for awhile (and in fact that helped with his severe

headaches), but it made him dizzy & he had to get off of it. He has

a lot of trouble reading as well.

> I also have no income at all

> and I am fighting with LTD and SSD! Ah, the joys of living with

lyme!<

Just wanted to say I can relate, Dave is on LTD right now & we are

applying for SSD, and fighting with the health insurance. Anyway, I

hope you can get on LTD & SSD soon. God bless, Merry :-)

[Guest guest]

Hi Merry, I had

an EEG in 1999, it showed nothing.

Although I don’t trust the doc who ordered it. Even with positive tests,

he told me I was just depressed and that nothing else was wrong with me and I should

see a shrink. Blah blah blah. Its all

been said before to many of us. When

the memory loss and headaches got really bad last year I went to a lyme literate

neuro. She did the EEG with much

more modern equipment than the other guy.

She also had me hyper ventilate during the test (breath quickly). She saw seizure activity in the rt. Frontal

lobe. I had another EEG last week and it showed additional seizure activity. Sometimes doctors interpret things differently. So it pays to get a second opinion. Merry, be careful with the LTD

company. They cut me off without a

moments notice. They just didn’t send

my December check!! I had to call them to find out they cut me. I was on for a year at the time and I am

told this is quit common. I don’t want to worry you, but they just cant be

trusted. Especially if they are an ERISA LTD. (company sponsored)

Cyntha, my seizures are called mild also. I am alert when they occur, and

sometimes my face twitches, my mouth on one side hangs and I feel awful. And I get sharp pain in my head. My right

temple. Its like a knife is slicing into my brain. Last week I thought I was having

a stroke. My neuro called it a

breakthrough seizure. At night I will

get the limb jumping. My arms or legs

will jump, an ambian calms that down.

Take care

roe

[Guest guest]

Hi nne:

It was writ by nne on Sun, 04 Feb 2001 about [ ] my brain is

truly fried!:

Welcome to the world of stir-fried brains! Gawwd it is sometimes hard to

keep a sense of humour...

^>My health has been awful and its hard for me to

read. I ^>have a seizure problem, that is getting worse, anyone else have

this ^>problem from lyme?

Oy!! This scares me a bit since, due to a head injury in '74, I had

PetitMal and ian Seizures for about 6-7 years. I was considered

" cured " in 1981, but occasionally I wonder. My companion worries when my

eyes start rolling upward and I seem to blank out. Seems the LD is

bringing my old bane back......

I am on a new medication, (keppra) and also 2400 mgs

^>of neurontin and that just makes me a bigger mess than usual. I

They tried Tegretal and Neurontin on me... I was on over-max dosages with

NO effect at all. We have found that certain Codeine-based pain meds help

the nerve hypersensitivity and tremors , BUT... when I ran

out and had to go to the ER (for the nerves AND back problems), they

reminded me that the Category III-Oxycontin 40mg (which they didn't have)

is 24x stronger than a Demerol IM shot.... and Demerol was all they could

give me. Difference is, the Oxy's are strong but I can function on

them...the Demerol didn't help other than to keep me so loopy that I was

finally able to rest until I could get to my Dr for a new Rx. One other

thing about Oxycontin.... my Rx runs $400 (in NYS) every month, out of my

own pocket! If I could get it in Canada, the same Rx runs $145 (US$). I

found this out while on vacation and needed medical care.

Emigration/Immigration sounds real tempting. ;->

^> also I have no income at all and I am fighting with LTD and SSD! Ah,

the joys ^>of living with lyme!

Keep fighting!!! You will get it IF you can perservere. Unfortunately, I

have the Catch 22 of... because of SSD I make too much $$ to get Medicaid

(to pay for long-term tx) though I do get Medicare(at least it covers the

basics.). Add in the LTD and I can't get treated.. too much for the

benefits, too little to pay for the tx. And people wonder why Lyme

patients are so frustrated most of the time????

^>Thanks for listening, I hope I made some sense!

You made sense to me... Hang in there!!

Hugsez...

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

Content-Type: multipart/alternative; name= " unnamed "

Content-Transfer-Encoding: 7bit

Content-Description:

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

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

Content-Type: application/octet-stream; name= " image001.jpg "

Content-Transfer-Encoding: base64

Content-Description:

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

--

* * * * * * *

Potter-deGrey laura@...

FCoG Metro'on- NY Ord Brighideach PULC

S.T.A.R. Reborn! starrevolutionegroups

's Cove http://www.webcoves.com/index.html

Sanctuary http://www.webcoves.com/circles/brighid.html

[Guest guest]

Hi Roe,

Well, Dave's had 2 EEG's at two different facilities, but I don't

know how modern the equipment was. They had him do all kinds of

things, the quick breathing & flashing lights & all kinds of things.

One was a sleep-deprived eeg. But it wasn't ordered by a lyme-

literate neuro, so I don't know.

How awful about your LTD. I'm not sure if our's is ERISA or not, I

should look into what that means. Does " company sponsored " mean they

pay the premiums to an independent company, or does it mean they

actually ARE the LTD company for you? Ours pays premiums to an

independent company. At any rate, we are trying to get on SSD (which

pays even less than the LTD, hard to imagine!) which doesn't seem to

be much benefit to us (our LTD will then reduce payments & wants any

back-pay SSD sends us), except that the kids may then get payments &

I don't think LTD can reduce by that amount. Although, our LTD has a

clause that after 2 years you have to prove you're disabled from ANY

job, not just your previous job, not sure how that will go. Don't

you love all this? Ugh!

Merry :-)

[Guest guest]

Keep fighting!!!

You will get it IF you can perservere. Unfortunately, I

have the Catch 22 of... because of SSD I make too much $$ to get Medicaid

(to pay for long-term tx) though I do get Medicare(at least it covers

the

basics.). Add in the LTD and I can't get treated.. too much for the

benefits, too little to pay for the tx. And people wonder why Lyme

patients are so frustrated most of the time????

^>Thanks for listening, I hope I made some sense!

You made sense to me... Hang in there!!

Hugsez...

Thanks , if I get the award from my LTD and get

SSD, I will not get Medicare either.

I will have to pay for COBRA. In order to keep my wonderful EATNA US

HELL CARE! It just keeps getting

better!!

roe

[Guest guest]

Does your state have a spend down? Because the cost of your medications goes towards that, and then will pay for them all. I am in the same situation as you, make too much on SSD, and have a large spenddown, ...but.. the cost of my meds and other medical expenses go towards the spend down. I don't have to pay out of pocket for meds, just get a print out from the pharmacy what they all cost a month and take it to medicaid once a year.

The human spirit is stronger than anything that canhappen to it.

C.

[Guest guest]

....but.. the cost

of my meds and other medical expenses go towards the spend down. I don't

have to pay out of pocket for meds, just get a print out from the pharmacy what

they all cost a month and take

not sure,

but that is good to know. I live

in NYS. Thanks

Roe

[Guest guest]

I get SSD (with Medicare..w/o MedicAid) & LTD... and US HELL CARE dropped

me cold... stuck me with about 10K in bills. Fighting them in the NYS

Insurance Dept..(mis)managed care section. But really too ill to push as

often or as hard as I need to... 2 years of relapse and no tx yet.

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

It was writ by nne on Tue, 06 Feb 2001 about RE: [ ] my brain

is truly fried!:

^>

^>

^>Thanks , if I get the award from my LTD and get SSD, I will not get

^>Medicare either. I will have to pay for COBRA. In order to keep my

^>wonderful EATNA US HELL CARE! It just keeps getting better!!

^>

^>roe

^>

^^***^^***^^***^^***^^***^^***^^

Potter-deGrey degrey@...

I'm a Lymie!!

The Lyme Alliance http://www.lymealliance.org/

[Guest guest]

--- nne <roe325@...> wrote:

>

> Note: blah blah is right. Steroids, gama?

radiation, viruses, and more cause some of the

same fried brain syndrome. Keep smiling get out

in the fresh air. I blow my nose once in a while

because I have fried ears. However, it doesn't

matter, because no matter how long I live, I will

keep trying. Try Poetry.com and see if some

poetry will cheer you up. Laauretta

__________________________________________________