3rd stage lyme diease

[Guest guest]

I am looking for people who have had lyme diease in its late stage.I

went undiagnosed for 6 years.I was so sick by that time it had

affected my ability to think,reason,remember,sleep ,etc.I would find

myself in my car and wouldn't remember where I was going.I lost all

my friends,and nearly my family as well.The road back has been so

difficult.I sometimes wonder if I will ever be the person I was.I

would like to speak to other people who have been there.

[Guest guest]

Hello my friend.

Yes I have been there, and if it can be of any comfort I believe many have who

are on the e group. I lost a marriage, my entire family of origin as

well as my children and possible all my grandchildren have Lyme Disease.

You asked if your life would be the same again. Do you think that you can have

experienced this much pain and loss emotional and physically, and then say " I am

the same as before these losses " ? For most of us this is not possible, we become

transformed in some way - our life values most likely will change, hopefully we

become more sensitive to that which is important. Do you think the buried

mineworkers life is going to be the same as prior to this horrible experience?

They probably have never known the power of prayer to this extent before now.

I do not think I'm going to be able to work as I did before. But my goal is to

do the best I can at any given time and not fear the future…..to learn to deal

with that in it's own time, and live in the present.

My emotional pain has been darker than the darkest depression I can imagine, but

I'm still here - and there still is a purpose for me to fulfill.

May you somehow find comfort and hope - Love Grete

bk_dizzy2 <bk_dizzy2@...> wrote: I am looking for people who have had

lyme diease in its late stage.I

went undiagnosed for 6 years.I was so sick by that time it had

affected my ability to think,reason,remember,sleep ,etc.I would find

myself in my car and wouldn't remember where I was going.I lost all

my friends,and nearly my family as well.The road back has been so

difficult.I sometimes wonder if I will ever be the person I was.I

would like to speak to other people who have been there.

[Guest guest]

Hi,

I had Lyme (and 2 strains of Bartonella) for 5 years w/o being treated.

The doctors called it " Chronic Fatigue Syndrome, " and didn't believe me

when I told them I was using different parts of my brain to compensate (I

could feel the brain fog). The first year that I was sick I could not

hold up a book, or focus my eyes on a page. As I rested a lot, I did

notice incremental improvement in units of months or years. I scaled my

life back. Then I was finally diagnosed.

I am sorry to hear of the lack of understanding in those around you. I

too have had to lose some friends. I think we can all relate to that.

Each of us resonds differently. My hope for you is that you can keep an

optimistic outlook. I have gone in and out of bad spells w. this disease.

But it helps to believe (when I can) that I am going in the right

*direction* (even if I feel bad).

I find the support of people on this list to be very important to me -

they understand.

If it is consolation to you - I don't know what my work future holds, but

thus far I've been able to pursue educational goals (and I'm 30 something

- not just out of college).

Keep the faith!

Healing to you,

Marie

[Guest guest]

In a message dated 7/30/2002 12:49:01 AM Eastern Standard Time,

bk_dizzy2@... writes:

I've been sick with Lyme Disease , Babesia and Erlichia since 1992. My yrs

with this illness have been hell as well. I lost all my friends and my first

marriage to this illness. It caused me to declair bankruptcy once allready. I

did however remarry in 1997 to a wonderful loving man who seems to be fairing

well so far.

I am no longer able to drive since 1999 or walk much without the use of a

wheelchair as I am dizzy all the time. my days are mostly spend on the couch

or in bed sleeping and my life is severely limited at this point. I don't get

out much except to the doctor. Like you, I have no idea if I will ever be the

person I used to be and to be honest I don't even think I can remember who

that person was.

Will I ever feel well again? Will I ever lead a productive life again?

Your guess is as good as mine at this point. You didn't say how old you were

or where you're from? Would love to chat with you if you'd like and you can

always email me personally

Robyn In SC

> I am looking for people who have had lyme diease in its late stage.I

> went undiagnosed for 6 years.I was so sick by that time it had

> affected my ability to think,reason,remember,sleep ,etc.I would find

> myself in my car and wouldn't remember where I was going.I lost all

> my friends,and nearly my family as well.The road back has been so

> difficult.I sometimes wonder if I will ever be the person I was.I

> would like to speak to other people who have been there.

>

>

[Guest guest]

In a message dated 7/29/2002 11:49:24 PM Central Daylight Time,

bk_dizzy2@... writes:

> I am looking for people who have had lyme diease in its late stage.I

> went undiagnosed for 6 years.I was so sick by that time it had

> affected my ability to think,reason,remember,sleep ,etc.I would find

> myself in my car and wouldn't remember where I was going.I lost all

> my friends,and nearly my family as well.The road back has been so

> difficult.I sometimes wonder if I will ever be the person I was.I

> would like to speak to other people who have been there.

>

>

you are indeed not alone. i went misdiagnosed for almost 5 years, and was

then treated inadequately. i became so ill i ended up in the hospital on

feeding, and thought surely i would die. somehow i have held on in spite of

years and years of hell. i will never be the same. i will never be " normal " .

i am alot better, but far from what i was before getting sick. i struggle

everday. i have had great loss too. marriage, family, and all my friends.

slowly i made new relationships with others that have chronic illness mostly,

as they get it. compassion is everything to me. please feel free to write me.

i have mourned the old me, after many years, and finally have come to accept

who i am today. i try to make the most of what i can do, and not to dwell on

the many, many cants. i dont beat myself up anymore for feeling sick, and not

being able to do things others take for granted. this is who i am now.

[Guest guest]

In a message dated 07/30/2002 12:49:29 AM Eastern Daylight Time,

bk_dizzy2@... writes:

> I am looking for people who have had lyme diease in its late stage.I

> went undiagnosed for 6 years.

I went undiagnosed for about 7 years myself...was diagnosed with something

else all that time. I too was becoming very sick as you mentioned. You can

contact me off the list if you'd like.

DrSkip2

[Guest guest]

I had the same problem....I am here for anyone to contact...these are hard

times for those of us with emerging illnesses...espec. tick borne and

otherwise.

Donna

[Guest guest]

I am in late stage Lyme disease. I have had seizures and a number of numerous

symptoms. I know how you feel. It is not an easy road. I still have some

family and friends who think I am crazy even with us having four positives. I

have it and my three daughters and probably my husband too. That makes five of

us all together.

Cyntha Landon Lititz, PA

>

> From: " bk_dizzy2 " <bk_dizzy2@...>

> Date: 2002/07/30 Tue AM 12:20:10 EDT

>

> Subject: [ ] 3rd stage lyme diease

>

>

[Guest guest]

Hi there,

I have had lyme for 4 years, and I am a mess; no longer the person I was.

Severe neurological problems - just got the MRI back and it is in the brain.

On orals for all this time. Things got worse when in April I was thrown from

my horse and and a severe head injury and 6 broken bones. I was just told my

immune system is shot and my body does not know what to do anymore. It is

late, I worked late, I cannot write any more but will be glad to correspond

with you and fill you in on my life of hell. Take care Kim Thank God for

these groups! They are the only support I have.

[Guest guest]

I am very sick and require a caregiver. I've been in

this situation since '92 as well, but was sick a year

before. I was not correctly diagnosed till many many

years later. I've a brain spect that shows I've an

infection etc., as well as an MRI with white matter.

I am a very difficult case, and realistically, I don't

really feel that I can be helped unless something new

comes along.

I cannot drive---Lyme has caused, amongst other

conditions, Neurally Mediated Hypotension (therefore,

I am generally dizzy). Mostly, I spend my days lying

down on the couch.

best,

lea

--- PrincessKiara70@... wrote:

> In a message dated 7/30/2002 12:49:01 AM Eastern

> Standard Time,

> bk_dizzy2@... writes:

> I've been sick with Lyme Disease , Babesia and

> Erlichia since 1992. My yrs

> with this illness have been hell as well. I lost all

> my friends and my first

> marriage to this illness. It caused me to declair

> bankruptcy once allready. I

> did however remarry in 1997 to a wonderful loving

> man who seems to be fairing

> well so far.

> I am no longer able to drive since 1999 or walk much

> without the use of a

> wheelchair as I am dizzy all the time. my days are

> mostly spend on the couch

> or in bed sleeping and my life is severely limited

> at this point. I don't get

> out much except to the doctor. Like you, I have no

> idea if I will ever be the

> person I used to be and to be honest I don't even

> think I can remember who

> that person was.

> Will I ever feel well again? Will I ever lead

> a productive life again?

> Your guess is as good as mine at this point. You

> didn't say how old you were

> or where you're from? Would love to chat with you if

> you'd like and you can

> always email me personally

> Robyn In SC

>

> > I am looking for people who have had lyme diease

> in its late stage.I

> > went undiagnosed for 6 years.I was so sick by that

> time it had

> > affected my ability to think,reason,remember,sleep

> ,etc.I would find

> > myself in my car and wouldn't remember where I was

> going.I lost all

> > my friends,and nearly my family as well.The road

> back has been so

> > difficult.I sometimes wonder if I will ever be the

> person I was.I

> > would like to speak to other people who have been

> there.

> >

> >

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Kim,

Wow -- what you have been through! You deserve a huge medal for surviving

after the horse throw -- broken bones and such trauma to an already sick

Lyme-stressed body is hard for me to even imagine.

I agree with you about the great support gained from this...it is the only

support I have, too. It really does help to know we aren't each so entirely

alone as it seems at times....my own mother has gone so far as to tell people

that Lyme is just a simple thing that I have " blown out of proportion " as my

son just gets sicker and more debilitated -- great support, huh?

I give each of you so much credit...fighting Lyme while trying to raise

children must be so incredibly difficult. I am healthy (I would say healthy

as a horse, but that would be kind of a kick to you, Kim, wouldn't it?! ha!)

and I must tell you there are days I feel guilty for feeling so good while my

great kid suffers.

Hang in there, Kim...and by the way, do you still have the horse?!!!

~Judie

[Guest guest]

Lea -- and all,

You mentioned driving and Lyme -- my son has his driver's permit (in our

state you can get it at age 15 and 6 months...) and there are very few days

he feels " clear " enough from the brain fog and dizziness to drive. I know

when he does drive, I worry terribly that he might not really be mentally

clear enough to be attempting it! Any advice for me????

~Nervous Mom Judie

[Guest guest]

Judie,

has had his learners driving permit since he was 15, but we

dont let him drive often cause the last time he was driving he had a

seizure while going down the road. Luckly we were on a back road and

he took his foot off the gas pedal when it started and his dad was in

the front seat with him and was able to steer us to the side of the

road.

Believe me this has been a argument from the start with . He

wants to drive so bad and has lost so much as it is. He told me once

that when he turns 18 I cant stop him from getting his licence and I

told him yes I can. Then I asked him what he would do if he had a

seizure while driving and hit someone head on and killed them. That

was the end of the discussion.

Love & Laugh

Di

> You mentioned driving and Lyme -- my son has his driver's permit

(in our

> state you can get it at age 15 and 6 months...) and there are very

few days

[Guest guest]

Hi Lea, Dont ever give up. I took a very long time after I was diagnosed to find

a Dr. willing to work as hard as I was to get me better. He sent me to a

infectious Med. Dr. Because he was so far away I only had to see him once and He

and my Dr. Faxed info. back and forth aand came up with a treatment plan for me.

I was treated for 4 weeks with doxycycline and then 4 weeks with another.

Because the diease had been with me for so long it was advanced and chronic.

That doesn't mean that your will be.If you get the right treatment( for you) you

may not be chronic. I was able to take a Pshycology class at our local college

this summer. 3 years ago I couldn't remember my name.I was unable to drive and

hardly move. And the pain, Oh gosh. I have been treated off and on over the

years. The last time was 6 months ago, until 2 weeks ago, my resistance got down

and I relasped. I have learned to tell when it first begins so it doesn't get

bad and we hit it again. Wish me luck in my finals tomorrow! and remember don't

give up! BK

lea wrote:I am very sick and require a caregiver. I've been in

this situation since '92 as well, but was sick a year

before. I was not correctly diagnosed till many many

years later. I've a brain spect that shows I've an

infection etc., as well as an MRI with white matter.

I am a very difficult case, and realistically, I don't

really feel that I can be helped unless something new

comes along.

I cannot drive---Lyme has caused, amongst other

conditions, Neurally Mediated Hypotension (therefore,

I am generally dizzy). Mostly, I spend my days lying

down on the couch.

best,

lea

--- PrincessKiara70@... wrote:

> In a message dated 7/30/2002 12:49:01 AM Eastern

> Standard Time,

> bk_dizzy2@... writes:

> I've been sick with Lyme Disease , Babesia and

> Erlichia since 1992. My yrs

> with this illness have been hell as well. I lost all

> my friends and my first

> marriage to this illness. It caused me to declair

> bankruptcy once allready. I

> did however remarry in 1997 to a wonderful loving

> man who seems to be fairing

> well so far.

> I am no longer able to drive since 1999 or walk much

> without the use of a

> wheelchair as I am dizzy all the time. my days are

> mostly spend on the couch

> or in bed sleeping and my life is severely limited

> at this point. I don't get

> out much except to the doctor. Like you, I have no

> idea if I will ever be the

> person I used to be and to be honest I don't even

> think I can remember who

> that person was.

> Will I ever feel well again? Will I ever lead

> a productive life again?

> Your guess is as good as mine at this point. You

> didn't say how old you were

> or where you're from? Would love to chat with you if

> you'd like and you can

> always email me personally

> Robyn In SC

>

> > I am looking for people who have had lyme diease

> in its late stage.I

> > went undiagnosed for 6 years.I was so sick by that

> time it had

> > affected my ability to think,reason,remember,sleep

> ,etc.I would find

> > myself in my car and wouldn't remember where I was

> going.I lost all

> > my friends,and nearly my family as well.The road

> back has been so

> > difficult.I sometimes wonder if I will ever be the

> person I was.I

> > would like to speak to other people who have been

> there.

> >

> >

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

In a message dated 7/30/2002 12:49:23 AM Eastern Daylight Time,

bk_dizzy2@... writes:

> .I was so sick by that time it had

> affected my ability to think,reason,remember,sleep ,etc.I would find

> myself in my car and wouldn't remember where I was going.I lost all

> my friends,and nearly my family as well

Dear BK_Dizzy,

I have been exactly where you are, except that I've had Lyme much, much

longer than 6 years.

I wasn't diagnosed until 1999.

I've had every single one of your symptoms, plus lots more, and, by the way,

you have described them very well. They are painful, frustrating, make you

think that you're going crazy, and very embarrassing, as it's so hard to

explain them to others.

I live in NJ. Feel free to call me if you wish.

I've had Intravenous ABX treatments, which have given me back much of my

life, but, no, I'll never be the same again.

Hugs, a Aida

973-228-3535

[Guest guest]

GoodGirl95, I can relate so well with you situation. I was so out of mind at

one point and I thought I was ok I went to get my nails done and parked my car

but left it neutral and one of the ladies in the shop sais " of no your car " " oh

no your car " my car was rolling backwards through the crowded parking lot.

Thank God that it turned out fine. Now I dont drive much at all I just feel

like it there was an emergency, I am not sure how good my reflexed would be so I

just try to stay safe.

This is truely the time you will find out in you life who is real to you and who

was just there for other reasoms. I lost alot of friends because I was no

longer the active party lets just have a good time person. I was told I was

dying and I taking a really good look at my life. Thank God once again that I

did not die. But just hang in there and if you ever want to e-mail personally

you can holly.snow@...

well take care

Re: [ ] 3rd stage lyme diease

In a message dated 7/30/2002 12:49:23 AM Eastern Daylight Time,

bk_dizzy2@... writes:

> .I was so sick by that time it had

> affected my ability to think,reason,remember,sleep ,etc.I would find

> myself in my car and wouldn't remember where I was going.I lost all

> my friends,and nearly my family as well

Dear BK_Dizzy,

I have been exactly where you are, except that I've had Lyme much, much

longer than 6 years.

I wasn't diagnosed until 1999.

I've had every single one of your symptoms, plus lots more, and, by the way,

you have described them very well. They are painful, frustrating, make you

think that you're going crazy, and very embarrassing, as it's so hard to

explain them to others.

I live in NJ. Feel free to call me if you wish.

I've had Intravenous ABX treatments, which have given me back much of my

life, but, no, I'll never be the same again.

Hugs, a Aida

973-228-3535

[Guest guest]

>GoodGirl95, I can relate so well with you situation. I was so out

>of mind at one point and I thought I was ok I went to get my nails

>done and parked my car but left it neutral and one of the ladies in

>the shop sais " of no your car " " oh no your car " my car was rolling

>backwards through the crowded parking lot.

hi

in my case i have had ill health and short term memory problems all

my life that i can remember(!). the good news is i have gained on the

problem thru long term efforts in diet and life-style. more on that

at the end, but first...

i had a car/forgetfullness story.

i parked my manual transmission in a gently sloped, almost empty,

strip mall parking lot bordering a busy four lane artery in long

island.

i did not put on the parking brake, but i left my car in gear and

went into a store. ten minutes later two

people came in and asked about the ownership of my car. i stepped

forward and they told me:

" your car just crossed the busy highway outside, rolled into a side

street, and came to rest in a pile of brush and plastic garbage cans

-all the time with your dog at the wheel!! " as a reward for their

efforts finding me they insisted that i give them EVERY number

associated with me and the vehicle -so they could play the lottery.

yes, my 85 lb sheppard knocked the gearshift into neutral and the car

began it's miraculous journey with my dog

sitting -ears alert in trepidation- upright in the drivers seat. the

auto left the parking lot thru an entrance, crossed four busy lanes

and was brought to a safe halt by entering a side street and smashing

into soft objects.

in my case my health was compromised frim the beginning by " celiacs "

disease. wheat, rye, oats, and certain other grains are POISON to me.

my reaction to them stunted my physical growth and caused whatever

spiritual growth i now possess. the variety of health problems i had

made my mother label me a hypochondriac.

well, the damage done by this has indeed made me very cautious about

my health. i cannot afford any injuries

to it because of the long term damage.

i certainly know what it means to not know from day to day what one's

condition will be and to not be able to engage in stable

relationships or a full time job. yes i have friends, but i am very

clear about my energy situation from the beginning.

the good news: i discovered my main malady thru my own research into

alternative health and i cured a long term candiasis brought on by

the disease thru fresh aloe juice, wheat grass juice, and moderate

long term fasting.

don't forget, as sue has said over and over, to deal with lyme or

other chronic conditions you really have to develop a continually

improving diet and lifestyle. and you need supplements. the daunting

task is always trying to determine WHAT supplements. than, you need

to release as much stress as possible from your mind.

you cannot pattern your life style after your average american

neighbors or family. psychologically you will have to find other

support. there IS NO OTHER WAY .

the good news is that -if you have a standard american life style or

ANYTHING close to it- you have a lot of changes available to you that

will help. but you will need new friends who have adopted some of the

beneficial

changes you seek.

--

sincerely

william meyer

[Guest guest]

Oh my goodness, I love these storys,that is so funny about the dog! What luck

the dog was'nt hurt! I would have loved to have seen that. Another car story

happened to me. I had went to a infectious medicine Dr. in Louisville and on the

way back my husband says " Lets stop and get something to eat. " So we found a

Hardees, Parked and went in side. I sat near the window, I could see the car

from where I was sitting.When my husband came with the food and wwe were just

about done I look up and see some older people getting in our car. So I jump up

and yell, " They are stealing our car. " Oh man I was so upset, we had just got

this car no way was I gonna let anyone steal it! So I was perpared to fight! I

start to go outside the whole time wondering why my husband wasn't upset, so I

say to him, " Why are you just standing there can't you see they are stealing our

car!! " He very calmly says look 2 spaces down. Now what I am wondering is why

did those people move our car! I know why they wanted a better parking place!

Yessss! thats it! BK

william meyer wrote:>GoodGirl95, I can relate so well with you situation. I

was so out

>of mind at one point and I thought I was ok I went to get my nails

>done and parked my car but left it neutral and one of the ladies in

>the shop sais " of no your car " " oh no your car " my car was rolling

>backwards through the crowded parking lot.

hi

in my case i have had ill health and short term memory problems all

my life that i can remember(!). the good news is i have gained on the

problem thru long term efforts in diet and life-style. more on that

at the end, but first...

i had a car/forgetfullness story.

i parked my manual transmission in a gently sloped, almost empty,

strip mall parking lot bordering a busy four lane artery in long

island.

i did not put on the parking brake, but i left my car in gear and

went into a store. ten minutes later two

people came in and asked about the ownership of my car. i stepped

forward and they told me:

" your car just crossed the busy highway outside, rolled into a side

street, and came to rest in a pile of brush and plastic garbage cans

-all the time with your dog at the wheel!! " as a reward for their

efforts finding me they insisted that i give them EVERY number

associated with me and the vehicle -so they could play the lottery.

yes, my 85 lb sheppard knocked the gearshift into neutral and the car

began it's miraculous journey with my dog

sitting -ears alert in trepidation- upright in the drivers seat. the

auto left the parking lot thru an entrance, crossed four busy lanes

and was brought to a safe halt by entering a side street and smashing

into soft objects.

in my case my health was compromised frim the beginning by " celiacs "

disease. wheat, rye, oats, and certain other grains are POISON to me.

my reaction to them stunted my physical growth and caused whatever

spiritual growth i now possess. the variety of health problems i had

made my mother label me a hypochondriac.

well, the damage done by this has indeed made me very cautious about

my health. i cannot afford any injuries

to it because of the long term damage.

i certainly know what it means to not know from day to day what one's

condition will be and to not be able to engage in stable

relationships or a full time job. yes i have friends, but i am very

clear about my energy situation from the beginning.

the good news: i discovered my main malady thru my own research into

alternative health and i cured a long term candiasis brought on by

the disease thru fresh aloe juice, wheat grass juice, and moderate

long term fasting.

don't forget, as sue has said over and over, to deal with lyme or

other chronic conditions you really have to develop a continually

improving diet and lifestyle. and you need supplements. the daunting

task is always trying to determine WHAT supplements. than, you need

to release as much stress as possible from your mind.

you cannot pattern your life style after your average american

neighbors or family. psychologically you will have to find other

support. there IS NO OTHER WAY .

the good news is that -if you have a standard american life style or

ANYTHING close to it- you have a lot of changes available to you that

will help. but you will need new friends who have adopted some of the

beneficial

changes you seek.

--

sincerely

william meyer

[Guest guest]

In a message dated 8/25/2002 9:38:07 AM Eastern Daylight Time,

wmeyer@... writes:

> i had a car/forgetfullness story.

> i parked my manual transmission in a gently sloped, almost empty,

> strip mall parking lot bordering a busy four lane artery in long

> island.

> i did not put on the parking brake, but i left my car in gear and

> went into a store. ten minutes later two

> people came in and asked about the ownership of my car. i stepped

> forward and they told me:

> " your car just crossed the busy highway outside, rolled into a side

> street, and came to rest in a pile of brush and plastic garbage cans

> -all the time with your dog at the wheel!! " as a reward for their

> efforts finding me they insisted that i give them EVERY number

> associated with me and the vehicle -so they could play the lottery.

> yes, my 85 lb sheppard knocked the gearshift into neutral and the car

> began it's miraculous journey with my dog

> sitting -ears alert in trepidation- upright in the drivers seat. the

> auto left the parking lot thru an entrance, crossed four busy lanes

> and was brought to a safe halt by entering a side street and smashing

> into soft objects.

>

Dear ,

Great dog story. Amazing.

Glad to hear it had a good ending,

Hugs, a

[Guest guest]

>>>>>>>the good news is that -if you have a standard American life style or

ANYTHING close to it- you have a lot of changes available to you that

will help. but you will need new friends who have adopted some of the

beneficial changes you seek.>>>>>

,

I so agree with your lifestyle/nutritional/spiritual/emotional/physical

changes...there is a great need to bring balance to one's life, to achieve

happiness and enjoyment and well being.

......except you don't have to leave your friends..........especially your

true friends.........that love you for who you are and the changes you have

made.

That applaud your steps to improve your health.....if they aren't doing

that.

They were never really your friends in the first place.

Conniek nwnj