Re: Welcome to @onelist.com

[Guest guest]

Dabs.

I copied Reid's article from his attachment and posted it, it was Tom

Grier's article. I am sending it again to you via private email.

Don't worry about being computer illiterate, most of us are.

Hugs,

Marta

NJ

>From: Dabret22@...

>

>Dear RMc,

>you are right, of course. Now I feel like an idiot, but was just soooooo

sick.

>I am not computer literate and either didnt GET article you sent me, or

lost

>it or don't know how to access it. Would you please E mail me directly at

>dabret22@... ? I definitely want to read article

>thanks, Dabs

>

[Guest guest]

In a message dated 6/24/99 5:52:04 PM, Dabret22@... writes:

<< Thanks for reassurance. Actually, LLMD told me about herx. last time in 94

and I knew to expect it but forgot how bad it could be. By the way, I

told my IV nurse I thought I was having a Herx. and she had never HEARD of

it........Also says she has no experience with Lyme.......No kidding!!!!!!!

>>

Hi Hope you are feeling alto better today. Have you been on Abx since 94

straight or have you been off for a whilae and recently put back on? Just

curious to everyones stories-Val

[Guest guest]

my name is willie ihave had problems the last 4years or longer.july of 97 the

pain was suffient enough to take me out of work.after being seen by dozens of

doctors .I was told that i possibly had fibromyalgia and CFIDS.now after

almost 2 years of this massive pain .i was told i had gotten lyme sometime in

the past.when i asked about it the doctor just kind of brust of and walked

out. Is that they don't want to face it or are they just ignorant of it. over

the past 2years they have made me feel as if i am the problem and that this

is not as bad as itseems. Ithank god for every day I am here pain or not ,but

how can these so called pillars of the commutity turn away from people in

pain and just write us of.

signed looking for relief and understanding

[Guest guest]

In a message dated 6/29/99 2:30:28 PM EST, Willie94@... writes:

<< From: Willie94@...

my name is willie ihave had problems the last 4years or longer.july of 97

the

pain was suffient enough to take me out of work.after being seen by dozens

of

doctors .I was told that i possibly had fibromyalgia and CFIDS.now after

almost 2 years of this massive pain .i was told i had gotten lyme sometime

in

the past.when i asked about it the doctor just kind of brust of and walked

out. Is that they don't want to face it or are they just ignorant of it.

over

the past 2years they have made me feel as if i am the problem and that this

is not as bad as itseems. Ithank god for every day I am here pain or not

,but

how can these so called pillars of the commutity turn away from people in

pain and just write us of.

signed looking for relief and understanding

>>

Dear Willie,

I am so sorry that you are going through this .Unfortunately, I know all too

well what it feels like . I got bitten ten yrs ago. I had the bulleyed rash

and went to my doc at the time. I told him that I had been hiking in the

woods in Northwestern New Jersey. I showed him my rash .. he agreed right

away and said that he would test me for LD. I went to the lab, they drew

blood, and a week or so later.. I hadd to call him to find out the results..

He said the results were negative.I questined him abt the diagnosis.. I was

all achy.. severely fatigued.. had all the flu like symptoms , but he became

very upset with me, I guess he felt as if I was challenging him. Anyway, he

was right the tests did come back negative but he never read the fine print

on the bottom of the report which suggested that he should re test me in a

week , because it takes at 2 weeks for the antigens to set in and show up on

the tests . He never re tested me... as time passed I became worse and

worse.. had all kinds of problems.. ringing in ears..panic attacks.. memory

loss.. confusion.. seizures.. just to name a few... He referred me to several

other docs in this hmo group to which I belonged at the time and none of them

read the chart. It got so bad that I couldnt walk anymore. I had to use

crutches..my legs were so bad I could not hold them up .. then it affected my

arms and I could no longer hold the crutches,... I could go on and on

forever.. but the point that I am making here is that I know what your going

through.. They all told me that I either had stress that I was unaware of

that was causing all of my symptoms or that I needed I psychiatrist because

it was all in my head.. I was not sick !! One doctor even wrote me a

prescription for Prozac, shook his head at me and walked out of his office

leaving me sitting there all alone and upset . I cried to them .. I told them

that I had a 2yr old little daughter that needed her mother. I told them I

was afraid that I was dying.. Not one of them had an ounce of sympathy for me

or my situation.I felt as if I were just a number to them..a number in a

waiting room full of other numbers just waiting to feel worse after seeing

them. Could you imagine.. I couldn't even walk ,, but I guess I was not sick

enough for them . After a while I began to think it WAS IN MY HEAD. Maybe I

am crazy !!!!

I became so depressed that I almost committed suicide , I was so close,,, But

my daughter was only 2 yrs old at the time.I could not take care of her on

my own, (my parents flew in several times to help me out) but I just could

not let her grow up w/out a mother.. so I held in there....Then one day with

what little strenght I had left I picked up this book on CFIDS..which is what

they finally diagnosed me with and I opened the book to no special page ..

just opened it up and there I found the name of my doc today. I called his

office and got an appt immediately. Thank God for him..he knew right away

that I had Lyme Disease. he tested me Western Blot.. ELISA.. LUAT .. all

came back positive.. I WAS NOT CRAZY !! IT WAS NOT IN MY HEAD..and Damn all

of them that made me feel as if I was crazy.. So.. Please don't give up

Willie..Hang in there.There is hope, and there are times when you will feel

better .Just KEEP LOOKING.. DO NOT settle for a doctor who you are not happy

with or makes you feel uncomfortable.. there are great Lyme support groups

around and lots of support for you .. If you'd like , you can email me and I

will turn you on to a couple of support groups that I attend.The people in

the groups are great .. I hate that you are feeling this way .. Just please

hang in there, and too bad if the docs don't want to give you the time of

day. I have learned that they always find the time to make use of the money

that they receive from our insurance companies..so I never leave a doctors

office until I am totally satisfied . If I don't understand something.. I

dont leave till they go over it again with me. WE are just as important as

they are. remember that !!

Good Luck to you .. sorry for carrying on here. E me anytime.. You have lots

of people who understand you ,and you are never alone. Remember that ! : )

God Bless,

[Guest guest]

HI,

in answer to your question, I was dx with lyme in 1994 after being bitten in

1970s and again in 1989.In 94 I had 12 wks IV rocephin and followed with oral

antibiotics (Sometimes changing abx or dosages) but NEVER off abx. Had

relapse while on high dose oral abx. (stress in Dec) and now very sick

again,,,,neuro,cardiac etc.. AM starting3rd week IV rocephin with oral Cipro

500 4x day and plaq. LLMD says will need " extensive IV abx. " but insur is

giving us a really hard time. LLMD says condition is lifethreatening at this

point and Husb and I will have to pay out of pocket if insur wont pay.

Dabs conn

[Guest guest]

I know what you mean by sensitivity. No I am not being treated at this time

,I see the doctor on 13th of july.I don,t think he expected the results of

the test to comback positive. He looked kind of bafold???

I cherish the mail I get ,it's hard to believe all of the support that is out

there .I thank the lord above for all the considerate people one the

internet.I have learned more from the internet about the various things going

on in my life and it helps to no there are people to take time to try and

help.Ithank for your concern

sincerly willie

[Guest guest]

welcome willy...

while u may not always get relief here u will get understanding ....a good

education on lyme....a few laughs.....the brunt of some of us letting of

steam( thats when u hit the delete button or really read the post as some of

us right better pissed off...lol).....and a feeling that well i can only

describe as a close knit family......i love everyone on this forum and have

never met any face to face....or even talked on the phone......nut i know

more about them and they about me than people i have known for years....they

are my true pillars of strength when lyme has me down.....ur story sounds

like most of us.....nissdianoses...ect......i have suffered with lyme since

1988 but was not dx till 1990......all because i did not have a

bullseye......i have been on social security disability due to chronic lyme

since july 3 ,1996....( hey my 3 year anniversery on

sat.....whooopppeeee....lol at the age of 38....whatch what u wish for i

always said i wanted to be reitred by 40.......oooopss.....guess i was if i

knew i would have kept my trap shut.....oooohhhh welllll......i must look

forward not back.......better days are coming ( ihope) cause the last 3

months have been the pits......i need to find someplace not to hot not to

cold......low in pollen....no smog....( oops starting to sound like heaven i

better shut up while i am ahead)....well group thats about all i have for

tonite.....guess i am in a strange mood......still shaky on the vacation

deal.....trying to phych myself but........wife and kids are going to great

adventure ( a big amusement park.....she offered to wheel me around not my

idea of fun.....so i will stay home .....all alone( yea.....peace and quite)

.....watch reruns and be a computer junky between naps........love ya all

Reid...nnj

[Guest guest]

>From: Willie94@...

>

>my name is willie ihave had problems the last 4years or longer.july of 97 the

>pain was suffient enough to take me out of work.after being seen by dozens of

>doctors .I was told that i possibly had fibromyalgia and CFIDS.now after

>almost 2 years of this massive pain .i was told i had gotten lyme sometime in

>the past.when i asked about it the doctor just kind of brust of and walked

>out. Is that they don't want to face it or are they just ignorant of it. over

>the past 2years they have made me feel as if i am the problem and that this

>is not as bad as itseems. Ithank god for every day I am here pain or not ,but

>how can these so called pillars of the commutity turn away from people in

>pain and just write us of.

>

>

>signed looking for relief and understanding

Hi Willie,

Welcome to the Lyme Aid List!

Looks like you got the run around from doctors that so many of us go

through. Sorry to hear it.

So are you being treated with abx right now?

In the morning when I first wake up I thank God that I am alive in spite of

all the stuff I have to go through daily.

And today I have extreme light sensitivity. Gives me eye pain and makes me

blink and very sleepy. I am wearing sunglasses indoors even.

Kiana Rossi

mailto:bornfree@...

Northern California

[Guest guest]

In a message dated 6/29/99 2:20:19 PM Pacific Daylight Time, Dabret22@...

writes:

<< HI,

in answer to your question, I was dx with lyme in 1994 after being bitten in

1970s and again in 1989.In 94 I had 12 wks IV rocephin and followed with

oral

antibiotics (Sometimes changing abx or dosages) but NEVER off abx. Had

relapse while on high dose oral abx. (stress in Dec) and now very sick

again,,,,neuro,cardiac etc.. AM starting3rd week IV rocephin with oral

Cipro

500 4x day and plaq. LLMD says will need " extensive IV abx. " but insur is

giving us a really hard time. LLMD says condition is lifethreatening at this

point and Husb and I will have to pay out of pocket if insur wont pay.

Dabs conn

>>

Thank yo for your story. Did you become well in 94-98 on the IV and orals.

Are you starting to feel well again. This disease is very difficult to live

with. Hang in There YOU will get well again-Val

[Guest guest]

hey RMcmur

Iknow about being wheeled around ,went to bush gardens for my wife's company

picknick.I didn'tnot like the idea ,but my wife knew it would be to much onme

..I had fun though got to watch my little girl [8years old] play. Myfamily

looks out for me they know this something that ican't control and did not

wish to happen.I was very active before this and love the great outdoors. I

am 33 years old and feel as if my life has been stolen from ,the pain

sometimes is unbearable .but each day I thank god for being able to see my

little girl grow and play.Nowadays Ilive my life threw her eyes .me and my

wife are expecting another child in sept. or oct.We had been trying for

7years and when lymes change my life thought we would not be blessed with

another child.I think the lord decided that there was time for some joy in

our life.Ican't wait to see the adventures that lye ahead .becuase I am not

going to let lyme destroy the days and years ahead.

wiilie

[Guest guest]

as i said......i try to look forward also......i know what u meen about

looking thru the eyes of a child mine are 7 and 10 and have been a big help

thru my disease .....unfortunatly my 7yo was infected with lyme last

year.......at this time she is doing well.......my mohter in law went with

them......i am not a big amusement park person anyway.......and enjoying my

day at home alone (cept for my constant companion my cat) and watching what i

want .....doing some computer stuff an just enjoying the peace and

quite......and reflecting on the days to come.......better days are coming i

hope........congrats on the new baby.....may god bless u all.....

Reid....nnj

[Guest guest]

Hi Willie,

Welcome to the list, I hope you will find support and information here

that will help you deal with your illness more easily. It is so sad that

your story is so familiar to everyone who posts on this list. We all have

been misdiagnosed, even those of us with reports of tick bites and bulls eye

rashes. The problem is the medical types just don't want to admit that this

disease is chronic and that the spirochete remains in our bodies resistant

to the ten days or four weeks of antibiotic treatment they offer. I am

hopeful that times are changing, gradually it is true, but eventually this

disease will be recognized as very serious and possibly a cure will be

found. In the meantime, welcome again, hope you enjoy the list. You will

find plenty of understanding here.

Hugs,

Marta

>From: Willie94@...

>

>my name is willie ihave had problems the last 4years or longer.july of 97

the

>pain was suffient enough to take me out of work.after being seen by dozens

of

>doctors .I was told that i possibly had fibromyalgia and CFIDS.now after

>almost 2 years of this massive pain .i was told i had gotten lyme sometime

in

>the past.when i asked about it the doctor just kind of brust of and walked

>out. Is that they don't want to face it or are they just ignorant of it.

over

>the past 2years they have made me feel as if i am the problem and that this

>is not as bad as itseems. Ithank god for every day I am here pain or not

,but

>how can these so called pillars of the commutity turn away from people in

>pain and just write us of.

>

>

[Guest guest]

it has been kay......even was nice and did a load of laundry and hung it out

for the wife.....awwwww........just me and the kitty.......nappin and doing

our own thing......my kids have a toy dressing table in my office(?) so the

cat curls up there when i am on line.......and snoozes.....and purrs.....love

that sound.....all in all I have enjoyed myself today.....but then again i

always try to ......now if i could just shed some of the pain...arghhhh i

would be happy.....achin my way thru life.....

Reid....nnj

[Guest guest]

>>>so i will stay home .....all alone( yea.....peace and quite)

.....watch reruns and be a computer junky between naps........love ya all

Reid...nnj<<<

now THAT sounds like heaven!

kay