Re: not doing to well (long version)

October 13, 2004

- from what I know (not a doc...just the mom of a Lymie), you have

reactivated the borrelia/lyme that was there years ago. It's in your

central nervous system. Doxy might help but I suspect you need IV

Rocephin-and probably some Mepron (for Babesia that you probably also have).

I don't know where you're located....maybe let us know that and we can

direct you to a doc who knows what's going on. I sure wish you the best of

luck....!!

[ ] not doing to well (long version)

I think that I am fighting for my life and there is nothing that can

be done. I had a reaction to lyme disease after 11 years with it. it

turns out that my strain of lyme is autoimmune. 34osp ,, about three

years ago i had been in bad shape with dizzyness and wierd sensation,

extreme anxiety, it was known by my doctor that I had lyme disease,

and it was documented in 87 . my doctor felt that in 95 that i barged

into his office and told him there is tingling on my nose and face and

arm,dizznes and off balance. he said well I dont know what it is lets

check for lyme. i got back a 23 band. he said I guess your body is

fighting something but it is not lyme. so every year i would go back

to him and the same thing you dont have it. now in 2001 I had woke up

and hit the floor with vertigo and as long as I kept my head upright I

would be ok, then electrical shock cross the scalp and disorientation,

then the fever and after the fever the fasciculations started all over

the body. I freaked out and tryed to make sence of what was happening

as i was also losing touch with reality. i looked up lyme and thought

maybe so i went to the doctor again in the city , the original doctor

who diagnosed me. I was ataxia and walking drunk with the wierdest

sensations that you could think of. he said we will do the lyme test

again. he said it sounds as if I need to be on medicine that there was

a possibility this was a a part of anxiety. well i left and drove

home. as i drove home i found that i was realy outside the lines. I

called my neuro and he said i dont know what you have but you dont

have dementia. he said go to the emergency room. i went and saw the

doctors, i told them that i had lyme disease before. i said if it isnt

lyme disease it surly must be mad cow. at this point I started to not

remeber peoples names and my emotions were unavailable use as they

were not there. flat is how i felt. I was immidieatly met by the

resident phsychiatrist and told that i need help to see a shrink. that

this was not normal behaviour thinking that you have mad cow.so i said

this must be lyme? and they said not 11 years ago.at this time I

noticed that there was tingling of the skin of the scalp and

everytoime i tried to feel emotion my scalp would tingle. I was beyond

frightened. as I could not feel this emotion. the phsyciatrist said

how would you like to come to tower 8 here at north shore. I said that

I have not slept for 8 days as my mind will not enter sleep. they said

we can take care of that.so I signed on the line and was taken away

with a supposed phsyciactric problem. I thought this would be good as

they might give me the antibiotic there. well I was wrong as soon as

they closed the door behind me I was at there mercy.at this time I

said I cant sleep so they gave me a pill. i said what pill is that,

they said it haldol. i said no way, they said yes way and proceded to

either give injection of it or a major tranquilzer.I tryed to sleep

but the sensations were overwhelming. I thought finally that i am

crazy. well that morning i got up not having slep at all, i noticed

that even in my state that i was the only normal person there. i

called my doctor and he said that i tested equivical.41 66 he forgot

that i had a 23 in 95 as if it was going to leave the body.well he

said he will put me on doxy 100mg twice a day. it had no effect. he

said that it takes time. well here I am stuck because i cant get out

of here I am locked in. my wife come over and i tell her that i have

lyme and she says no you dont and so the same with the rest of the

family. i said can you go and get antibiotics for me or talk to some

doctor outside the hospital, well they said no . this is not lyme. so

i said im going to die of mad cow. they thought that it was funny but

in my eyes it was real.I spent 9 days there trying to look normal so i

could get out. remeber that i had no emotion or memory. i forgot who

my family was. well the doxy i think helped a little but i thought

that it was not working at the time.I had no support at all and all

the bad luck to have signed to go here . i was much better off on the

outside where I could have held up a ekerds or genovese to get

antibiotics. thinking back now i wish i had dont that.

i got out of the hospital and they told me to go to out patient were

the immedietly put a rubber band on my arm and said pull it if you

think your dieng of some disease. and if you dont stay of the internet

we will bring you right back involentarlily. so aff to home i went. i

noticed that i could feel the nerves in my back along the spinal

colums as if something was there. the nerves seemed to be irratated

and inflamation would just wonder around. 4 months go by and I am

still alive things seem to be dieng down I am not on meds as I dont

believe at this stage i have lyme. it must be mad cow and im going

down for the count.1 year goes by and i noticed that the

fasciculations are starting to slow up and little did know that it was

infection of the motor neurons, i went to the hospital ten time at

saint francis and 8 time at north shore,. i was greeted by the

psychiatrist every time. they figured that i was delusional that i was

to have a disease like what i thouht i had. they sent me home and

again they sent me home and eventualy they would not let me register.

now 2 years go by and im laying back trying to sleep and i start to

hallucinate in a dream state, everything is purple,i woke up and said

what the hell is going on i did not panick as i was not able

to.thenthe jerks started, violent head turning and jerking of the

whole extremety. at this time there was a vibrating sensation in my

back as if thre are nerves disconected.i went to the hospital and they

did test and nothing. now I went to sleep that night and noticed that

i was acting out my dreams and when i awoke with a head that my left

eye was dialated. i screamed to my wife that there is something wrong

and she said that her dad is dying not you to stop it you been to many

doctor.her dad had stomache cance and going fast. then the jerks got

much worse and the doctors were not helping. so i went back to the

doctor in the city and had a speced scan that revieled severe

hypoperperfusion. now he said ill treat you with doxy 200 mg a day and

that had no effect it was not untill i doubled the dose that it

worked.now I was killing the lyme but what about the insult to the

brain and the motor neuron that i hope are still there but it is

obviuos that i took out 50 percent of my nerves from the immune

system. now what could of been stopped every year for fifteen years is

a tragedy. the doctor dont care as they are not efected.

this has beent he worst time of my life and i wonder if i will make it

eric

Questions and/or comments can be directed to the list owner at

-Owner

October 14, 2004

....DONT YOU GIVE UP!!! THERE ARE DRS OUT THERE THAT CAN HELP YOU WITH

LYME....I DONT KNOW WHERE YOU ARE FROM BUT IF YOU EMAIL ME DIRECTLY

Laurie362004@... i might be able to direct you to a few people from the

help my husband i have received from others.....lyme is very frightning but

never give up till you find someone who will listen! Laurie