Hello

May 30, 2001

Hi I'm Davena and I'm from the East End of London, England

>Hello and welcome Simon

>Nice to know that there are other UK folk here as well as our American and

>other friends - where else is everyone from??

>Nigel ) (uk)

May 31, 2001

In a message dated 30/05/01 15:29:09 GMT Daylight Time, davenam@...

writes:

> Hi I'm Davena and I'm from the East End of London, England

>

Hi Davena

Nigel ) (uk)

June 1, 2001

I currently reside in Dallas, but I'm from New York,

and lived in Suffolk, England for 4 years back in the

early 90s.. you know I can't donate blood because of

that? They figure anyone who lived in the UK during

the early 90s is a mad cow carrier..

--- Davena <davenam@...> wrote:

> Hi I'm Davena and I'm from the East End of London,

> England

>

> >Hello and welcome Simon

>

> >Nice to know that there are other UK folk here as

> well as our American and

> >other friends - where else is everyone from??

>

> >Nigel ) (uk)

>

> [Non-text portions of this message have been

> removed]

>

June 8, 2001

In a message dated 6/7/2001 11:52:02 PM Eastern Daylight Time,

jules@... writes:

> So, what is the cure for late stage Lyme?

>

> Is there a cure that doesn't involve allopathic drugs?

>

> Thank you,

>

Hi ,

Personally I don't like the word " cure " because they do not as of yet

know how to iradicate the spirchete out of the body totally so how can there

be a cure? I do however believe that one can obtain a full remission.. As for

your treatment depending on how sick you are you may start off with Oral

antibiotics or possibly IV... Do you have a Lyme Literate doctor now? Best

of Luck

June 8, 2001

In a message dated 6/8/2001 3:01:58 PM Eastern Daylight Time,

slmitch1@... writes:

> Roe,

> Sometimes I think he's going to put me in a rubber room. But as frustrated

> as it gets he is patient with me. I get so frustrated with myself that I

> close myself up in my room. It's nice to know that I'm not the only one

> going through this maybe I'm not so nuts. Thank You for letting me know.

> Sheryl

>

Sheryl,

You're far from nuts.. You're physically ill and we all undrstand.

June 8, 2001

,

I have had Lyme for going on two years in and out of " remission " , if there

is a cure for late stage Lyme I would also like to know. I hit the

neurological stage at the end of last year, every since I have to take

seizure medication and my brain lives in a fog. Yesterday I was such a

basket case my husband thought I was going by-polar. Good luck. sheryl

[ ] Hello

> Hi,

>

> I am new here. I have been sick & miserable for 20 years, now they

> seem to think it is Lyme. When I was reading about Lyme on the web

> today, it all fits my picture very well, I never knew Lyme could

> cause such diverse problems as my frequent baldder infections - also

> I had a tick when I was 12, I never took it off because I didn't know

> what it was, it was shortly after that I started getting sick. At

> the time the Dr. asked ma about my sex life, he seemed to think I had

> an STD (at 12!! jeepers) or mono.

>

> I will find out more in a few months when I get to speak with some

doctors.

>

> So, what is the cure for late stage Lyme?

>

> Is there a cure that doesn't involve allopathic drugs?

>

> Thank you,

>

> 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 normal

>

> Please 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

>

June 8, 2001

Sheryl, same thing with me! I have what may be irreversible damage to

certain parts of my brain. I can not learn new things, its so frustrating

and I am on anti seizure medication. today I am having one of my jello

brain days. its like my brain is loose inside my head, if I move my head to

the left, my brain takes time to come with it. geeze that makes no sense.

if I told you the rest of my neurological symptoms, I might be put in a

rubber room! ask your hubby for his patience.

roe

June 8, 2001

Roe,

Sometimes I think he's going to put me in a rubber room. But as frustrated

as it gets he is patient with me. I get so frustrated with myself that I

close myself up in my room. It's nice to know that I'm not the only one

going through this maybe I'm not so nuts. Thank You for letting me know.

Sheryl

RE: [ ] Hello

> Sheryl, same thing with me! I have what may be irreversible damage to

> certain parts of my brain. I can not learn new things, its so frustrating

> and I am on anti seizure medication. today I am having one of my jello

> brain days. its like my brain is loose inside my head, if I move my head

to

> the left, my brain takes time to come with it. geeze that makes no sense.

> if I told you the rest of my neurological symptoms, I might be put in a

> rubber room! ask your hubby for his patience.

>

> roe

>

June 8, 2001

<P> Hi & amp; Welcome,

<P>First of all, there is no cure for Lyme

disease. & nbsp; You might be wise to read as much

information as you can in regards to Lyme...You'll

find doctors are not much help, unless you can find a

good LLMD. & nbsp; Plus, you have us here in the

group...we all KNOW from our experiences. & nbsp; Good

Luck!

<P>Kris

<P> & nbsp;

<P> & nbsp; <B><I>jules

& lt;jules@... & gt;</I></B> wrote:

<BLOCKQUOTE style= " BORDER-LEFT: #1010ff 2px solid;

MARGIN-LEFT: 5px; PADDING-LEFT: 5px " ><TT>Hi,<BR><BR>I

am new here. I have been sick & amp; miserable for 20

years, now they <BR>seem to think it is Lyme. & nbsp;

When I was reading about Lyme on the web <BR>today, it

all fits my picture very well, I never knew Lyme could

<BR>cause such diverse problems as my frequent baldder

infections - also <BR>I had a tick when I was 12, I

never took it off because I didn't know <BR>what it

was, it was shortly after that I started getting

sick. & nbsp; At <BR>the time the Dr. asked ma about my

sex life, he seemed to think I had <BR>an STD (at 12!!

jeepers) or mono.<BR><BR>I will find out more in a few

months when I get to speak with some

doctors.<BR><BR>So, what is the cure for late stage

Lyme?<BR><BR>Is there a cure that doesn't involve

allopathic drugs?<BR><BR>Thank

you,<BR><BR><BR></TT><BR><!-- |**|begin egp html

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June 8, 2001

nne,

My, your symptom of the head with jello inside and the brain moving around. I

had this right after a closed head injury, so now hmmmm... I used to

say my brain had to much juice around it and I really thought I could feel it.

One is not supposed to feel one's own brain, are they. It was before

August of 1985 that I got sick and this strange feeling came on after the closed

head injury in Feb of 1986. I have read that big stressful

happenings can bring on many Lyme symptoms all at once and I have for the 2 yrs

that I have learned I have Lyme wondered because the symptoms I had

immediately after the head injury were the same as you are having. My seizures

though were just a smell thing, I would smell a smouldering garbage

file, I checked my house and outdoors everytime but the only thing, including

medication, to make them go away was to just lay down and quit doing

what I was doing. Weird thing as I could fill a hanky with perfume and still

smell this smell through the perfume.

I have found over these 15 undiagnoised years, 17 yrs now that symptoms stay

about 6 months and then most of them leave, only to be replaced by

another one.

I did go to a neurophycoligist(its not spelled correctly) for a year for

individual and groups therapy sessions on short term memory, probably some

other things too but then who can remember. Of course too, these symptoms

overlap as to when they come and go. I have learned with Lyme if you don't

use it you will loose it so I have always stayed very active in the brain part.

I just came off a very bad year, had the fog so bad so not quite

sure what all I did do but now that the fog has " lifted " I really realize how

much of the brain workings are troubling me-I can't imagine how bad I

would be had I not continued to keep it active.I do have one advantage, I do or

am working on my family genealogy. THAT keeps the brain active to

say the least. I am able to find info on family but I do have problems keeping

members straight when filling out family sheets-to be honest I am

putting most of them off hoping since I am improving so much I will get better

in the brain part and not really mess them up good like I know I can.

Just wanted you to know that's the first time I ever heard of someone else's

brain feeling like mine did so many years ago. Have you ever had a

depth perception problem?

Coleen

nne wrote:

> Sheryl, same thing with me! I have what may be irreversible damage to

> certain parts of my brain. I can not learn new things, its so frustrating

> and I am on anti seizure medication. today I am having one of my jello

> brain days. its like my brain is loose inside my head, if I move my head to

> the left, my brain takes time to come with it. geeze that makes no sense.

> if I told you the rest of my neurological symptoms, I might be put in a

> rubber room! ask your hubby for his patience.

>

> roe

>

June 8, 2001

Thanks, but someone else ought to be filling out these home loan reports I

put out today.

Sheryl

Re: [ ] Hello

> In a message dated 6/8/2001 3:01:58 PM Eastern Daylight Time,

> slmitch1@... writes:

>

> > Roe,

> > Sometimes I think he's going to put me in a rubber room. But as

frustrated

> > as it gets he is patient with me. I get so frustrated with myself that I

> > close myself up in my room. It's nice to know that I'm not the only one

> > going through this maybe I'm not so nuts. Thank You for letting me know.

> > Sheryl

> >

>

> Sheryl,

> You're far from nuts.. You're physically ill and we all undrstand.

>

June 9, 2001

Colleen, hi, its not a matter of not using it and so loosing it. I know you

didn't mean to offend, but that statement hurts, because it was said to me

by a non lymie about two years ago who knew my computer skills. when I told

her I couldn't remember all I had learned in MS Word, enough to get me to go

for certification and an A+ certificate, she told me " if you don't use it

you loose it " it had nothing to do with not using it. I couldn't use it

because I couldn't find it! it was gone. it started to go even before I

knew I had lyme. I tried to teach someone at work how to make a merge

document, and I couldn't remember how! it was awful! that was my first

symptom of brain problems. I thought I was just getting old. Not! just

spirochetes on the brain. I get the smell thing too, but its usually cat

urine or dog do. and I don't have pets! I would check my grandkids pants

over and over, even though they were all potty trained, I swore one of them

had an accident.

I have to go for neuro physc testing. my neuro says this will narrow down

the problem areas and she will work with me to help correct them or prevent

them from getting worse. but she also tells me she is not sure she can

restore my brain to its previous infected state.

roe

June 9, 2001

Roe,

I certainly did not mean to hurt your feelings. Immediately from the closed head

injury, which I think alot was the lyme as well, I could not even

dial a touch tone telephone, I could see the number written out but I couldn't

make the connection from the phone book-eyes to the fingers, now that

sounds weird but it is true. Also I could no longer spell ANYTHING, I found that

out since I couldn't dial a phone to call my family in another

state that I would write letters, well, that didn't work either so I decided I

would see if I could still read-Yeah, could still do that and then I

found once I then saw a word in print I could then remember how to spell it.

Before I see a word in print I can't even find it in the

dictionary-just a complete total blank although I can pronounce it and know

which word I want. Seldom do I still run across one of those words but

it still happens, I can pronounce it but cannot for the life of me figure out

what letter is the first letter to even look in the dictionary. I had

been tested years earlier and had lost 23 IQ points with the head injury, I was

told there was nothing I could do to get them back but I did get 6

points back when tested later. What I learned in the year of therapy was a new

way of recalling my old memory and short term memory-It doesn't come

easy, I can still forget if I do not do my " thing " in my head which is repeat it

very fast ten times, even that has it flaws but works most of the

time. So what you knew is still there you just have to be taught a new way to

recall it, I was so bad at the beginning I had to hire someone to

watch me to keep me from getting hurt as I was constantly forgetting to turn

things off-like the stove and would forget to look before crossing a

street. So we can get better it what I am saying. Another thing I have found is

that things have to be totally organized before I can do a

task-something I have to live with but it works, also I can learn new things but

not the way I used to, another thing I learned during my therapy.

Just don't ever give up as that's when the Lyme wins everything.

Coleen

nne wrote:

> Colleen, hi, its not a matter of not using it and so loosing it. I know you

> didn't mean to offend, but that statement hurts, because it was said to me

> by a non lymie about two years ago who knew my computer skills. when I told

> her I couldn't remember all I had learned in MS Word, enough to get me to go

> for certification and an A+ certificate, she told me " if you don't use it

> you loose it " it had nothing to do with not using it. I couldn't use it

> because I couldn't find it! it was gone. it started to go even before I

> knew I had lyme. I tried to teach someone at work how to make a merge

> document, and I couldn't remember how! it was awful! that was my first

> symptom of brain problems. I thought I was just getting old. Not! just

> spirochetes on the brain. I get the smell thing too, but its usually cat

> urine or dog do. and I don't have pets! I would check my grandkids pants

> over and over, even though they were all potty trained, I swore one of them

> had an accident.

>

> I have to go for neuro physc testing. my neuro says this will narrow down

> the problem areas and she will work with me to help correct them or prevent

> them from getting worse. but she also tells me she is not sure she can

> restore my brain to its previous infected state.

>

> roe

>

June 9, 2001

but I have dept perception problems. I believe it

> goes along with the neurological problems

> > My, your symptom of the head with jello inside and the brain moving

> around.

I have been on Flagyl for 10 weeks, just now getting to 375mgs. All the

neuro symptoms I had are back plus about 3 tons more LOL When driving,

which I try to not do now, I feel like the tail of my truck is sliding out,

guess thats a vertigo thing? Memory is all but shot, have lists all over to

keep me in line. hubby took me to the store the other day and I left my list

at home, I went in for one thing and dangit if I got a load of stuff and

that one thing is still at the store LOL. Anyone get the feeling of weighing

a ton all the time? I know I didnt say that right, I have mind-numbing

fatigue, the kind that tells you to go lay down, *right now* when I get that

tired I feel like my arms and legs are weighed down. God I hate this

disease. Pepi

June 9, 2001

In a message dated 6/9/2001 6:17:39 PM Eastern Daylight Time,

roe325@... writes:

> im sick of people i just went outside to lie down to

> relax and my neigbors said get ajob i said i cant work

> they said yes you can imstarting to hate alot of

> people i lost my freiends from this and my family i

> cant take this stupid remarks.

> --- Sheryl

>

Next time he or she says get a job tell them to get a life this way they

don't have to sit around and live through yours *beams sarcasticly*

June 9, 2001

Coleen,

I can't speak for Roe but I have dept perception problems. I believe it

goes along with the neurological problems

Sheryl

Re: [ ] Hello

> nne,

> My, your symptom of the head with jello inside and the brain moving

around. I had this right after a closed head injury, so now hmmmm... I used

to

> say my brain had to much juice around it and I really thought I could feel

it. One is not supposed to feel one's own brain, are they. It was before

> August of 1985 that I got sick and this strange feeling came on after the

closed head injury in Feb of 1986. I have read that big stressful

> happenings can bring on many Lyme symptoms all at once and I have for the

2 yrs that I have learned I have Lyme wondered because the symptoms I had

> immediately after the head injury were the same as you are having. My

seizures though were just a smell thing, I would smell a smouldering garbage

> file, I checked my house and outdoors everytime but the only thing,

including medication, to make them go away was to just lay down and quit

doing

> what I was doing. Weird thing as I could fill a hanky with perfume and

still smell this smell through the perfume.

> I have found over these 15 undiagnoised years, 17 yrs now that symptoms

stay about 6 months and then most of them leave, only to be replaced by

> another one.

> I did go to a neurophycoligist(its not spelled correctly) for a year for

individual and groups therapy sessions on short term memory, probably some

> other things too but then who can remember. Of course too, these symptoms

overlap as to when they come and go. I have learned with Lyme if you don't

> use it you will loose it so I have always stayed very active in the brain

part. I just came off a very bad year, had the fog so bad so not quite

> sure what all I did do but now that the fog has " lifted " I really realize

how much of the brain workings are troubling me-I can't imagine how bad I

> would be had I not continued to keep it active.I do have one advantage, I

do or am working on my family genealogy. THAT keeps the brain active to

> say the least. I am able to find info on family but I do have problems

keeping members straight when filling out family sheets-to be honest I am

> putting most of them off hoping since I am improving so much I will get

better in the brain part and not really mess them up good like I know I can.

>

> Just wanted you to know that's the first time I ever heard of someone

else's brain feeling like mine did so many years ago. Have you ever had a

> depth perception problem?

> Coleen

>

> nne wrote:

>

> > Sheryl, same thing with me! I have what may be irreversible damage to

> > certain parts of my brain. I can not learn new things, its so

frustrating

> > and I am on anti seizure medication. today I am having one of my jello

> > brain days. its like my brain is loose inside my head, if I move my head

to

> > the left, my brain takes time to come with it. geeze that makes no

sense.

> > if I told you the rest of my neurological symptoms, I might be put in a

> > rubber room! ask your hubby for his patience.

> >

> > roe

> >

June 9, 2001

--i have this very bad i feel like i have brain damage

or something no one understands at all and i have no

support i can stand it i feel like im going nuts my

self. my biochemist that i work with says he has to

fix the problem how it started but i need something

for my brain. this doc at a vitaimn store yesterday

claims that this brain thing is all from candida and

my phchatrist thinks i have lyme and this doc

mentioned taking vinpocetine for the brain has anyone

heard of this. How about flax seed oil can this help

i need something quick i have been sick since my son

was born and i only got worse and i cant do much of

anything. his dad divorced me my mom yells at me i

need some coping skills any suggestions? love

michelle

itch1@...> wrote:

> Coleen,

> I can't speak for Roe but I have dept perception

> problems. I believe it

> goes along with the neurological problems

> Sheryl

> Re: [ ] Hello

>

> > nne,

> > My, your symptom of the head with jello inside and

> the brain moving

> around. I had this right after a closed head injury,

> so now hmmmm... I used

> to

> > say my brain had to much juice around it and I

> really thought I could feel

> it. One is not supposed to feel one's own brain, are

> they. It was before

> > August of 1985 that I got sick and this strange

> feeling came on after the

> closed head injury in Feb of 1986. I have read that

> big stressful

> > happenings can bring on many Lyme symptoms all at

> once and I have for the

> 2 yrs that I have learned I have Lyme wondered

> because the symptoms I had

> > immediately after the head injury were the same as

> you are having. My

> seizures though were just a smell thing, I would

> smell a smouldering garbage

> > file, I checked my house and outdoors everytime

> but the only thing,

> including medication, to make them go away was to

> just lay down and quit

> doing

> > what I was doing. Weird thing as I could fill a

> hanky with perfume and

> still smell this smell through the perfume.

> > I have found over these 15 undiagnoised years, 17

> yrs now that symptoms

> stay about 6 months and then most of them leave,

> only to be replaced by

> > another one.

> > I did go to a neurophycoligist(its not spelled

> correctly) for a year for

> individual and groups therapy sessions on short term

> memory, probably some

> > other things too but then who can remember. Of

> course too, these symptoms

> overlap as to when they come and go. I have learned

> with Lyme if you don't

> > use it you will loose it so I have always stayed

> very active in the brain

> part. I just came off a very bad year, had the fog

> so bad so not quite

> > sure what all I did do but now that the fog has

> " lifted " I really realize

> how much of the brain workings are troubling me-I

> can't imagine how bad I

> > would be had I not continued to keep it active.I

> do have one advantage, I

> do or am working on my family genealogy. THAT keeps

> the brain active to

> > say the least. I am able to find info on family

> but I do have problems

> keeping members straight when filling out family

> sheets-to be honest I am

> > putting most of them off hoping since I am

> improving so much I will get

> better in the brain part and not really mess them up

> good like I know I can.

> >

> > Just wanted you to know that's the first time I

> ever heard of someone

> else's brain feeling like mine did so many years

> ago. Have you ever had a

> > depth perception problem?

> > Coleen

> >

> > nne wrote:

> >

> > > Sheryl, same thing with me! I have what may be

> irreversible damage to

> > > certain parts of my brain. I can not learn new

> things, its so

> frustrating

> > > and I am on anti seizure medication. today I am

> having one of my jello

> > > brain days. its like my brain is loose inside my

> head, if I move my head

> to

> > > the left, my brain takes time to come with it.

> geeze that makes no

> sense.

> > > if I told you the rest of my neurological

> symptoms, I might be put in a

> > > rubber room! ask your hubby for his patience.

> > >

> > > roe

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> > > 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 normal

> > >

> > > Please 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

> > >

June 9, 2001

im sick of people i just went outside to lie down to

relax and my neigbors said get ajob i said i cant work

they said yes you can imstarting to hate alot of

people i lost my freiends from this and my family i

cant take this stupid remarks.

--- Sheryl <slmitch1@...> wrote:

> HI Roe,

> Good luck with the doc. I don't really have a smell

> problem but I

> understand about not being able to find it. I try

> and stimulate my brain

> regularly. Unfortunatly my brain wants to sleep most

> of the time. It's like

> trying to wake a sleeping bear.

> Sheryl

> RE: [ ] Hello

>

> > Colleen, hi, its not a matter of not using it and

> so loosing it. I know

> you

> > didn't mean to offend, but that statement hurts,

> because it was said to me

> > by a non lymie about two years ago who knew my

> computer skills. when I

> told

> > her I couldn't remember all I had learned in MS

> Word, enough to get me to

> go

> > for certification and an A+ certificate, she told

> me " if you don't use it

> > you loose it " it had nothing to do with not using

> it. I couldn't use it

> > because I couldn't find it! it was gone. it

> started to go even before I

> > knew I had lyme. I tried to teach someone at work

> how to make a merge

> > document, and I couldn't remember how! it was

> awful! that was my first

> > symptom of brain problems. I thought I was just

> getting old. Not! just

> > spirochetes on the brain. I get the smell thing

> too, but its usually cat

> > urine or dog do. and I don't have pets! I would

> check my grandkids pants

> > over and over, even though they were all potty

> trained, I swore one of

> them

> > had an accident.

> >

> > I have to go for neuro physc testing. my neuro

> says this will narrow down

> > the problem areas and she will work with me to

> help correct them or

> prevent

> > them from getting worse. but she also tells me

> she is not sure she can

> > restore my brain to its previous infected state.

> >

> > roe

> >

> > [Non-text portions of this message have been

> removed]

> >

> > 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 normal

> >

> > Please 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

> >

June 9, 2001

HI Roe,

Good luck with the doc. I don't really have a smell problem but I

understand about not being able to find it. I try and stimulate my brain

regularly. Unfortunatly my brain wants to sleep most of the time. It's like

trying to wake a sleeping bear.

Sheryl

RE: [ ] Hello

> Colleen, hi, its not a matter of not using it and so loosing it. I know

you

> didn't mean to offend, but that statement hurts, because it was said to me

> by a non lymie about two years ago who knew my computer skills. when I

told

> her I couldn't remember all I had learned in MS Word, enough to get me to

go