Re: Welcome to @onelist.com

[Guest guest]

,

Have you contacted the LDF, for a donation of $5 they will send you a

list of doctors in your area that will treat Lyme disease?

Here is the web site:

http://www.lyme.org/index2.html

Good luck,

Marta

--->

>i have been given several " lyme leads " to drs. in va and west va. i called

>approx. 25 and only received " we are not accepting patients " , or " well yes

i

>am sure we can treat that ... yes we have seen a hand full in 5 years " . i

>know of 0 in these states but if anyone can set this record straight please

>post it!!!

>an infectious disease specialist in roanoke, va told me i was experiencing

> " lyme hysteria " and based upon my symptoms (thes lyme ones that is) i did

>not have this disease (even though i had a positive western blot).

>

>

>

[Guest guest]

i can not imagine that they will give me a listing of ANY in my area. i

have requested other " listings " and all begin OUTSIDE of VA. or when you

actually call the listing, they have only seen 1 or 2 LD patients over the

YEARS. it is a real problem here. actually the dr. in roanoke that told me

i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high

hopes).

>From: " J & M McCoy " <mlmccoy@...>

>

>,

> Have you contacted the LDF, for a donation of $5 they will send you a

>list of doctors in your area that will treat Lyme disease?

>Here is the web site:

>

>http://www.lyme.org/index2.html

>

>Good luck,

>Marta

>--->

>>i have been given several " lyme leads " to drs. in va and west va. i called

>>approx. 25 and only received " we are not accepting patients " , or " well yes

>i

>>am sure we can treat that ... yes we have seen a hand full in 5 years " . i

>>know of 0 in these states but if anyone can set this record straight please

>>post it!!!

>>an infectious disease specialist in roanoke, va told me i was experiencing

>> " lyme hysteria " and based upon my symptoms (thes lyme ones that is) i did

>>not have this disease (even though i had a positive western blot).

>>

>>

>>

>

>

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MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

does anyone know of a really active CFS listserv for a friend of mine?

thanks

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

Yes, I do. Really. But is she sure she has CFS and not Lyme (misdiagnosed as

CFS)?

Try this newsgroup:

Alt.med.cfs

and this website:

<A HREF= " http://www.cfids-me.org/ " >CFIDS, M.E., and Chronic Fatigue Syndrome

Inf...

</A>

In a message dated 5/14/99 11:11:54 AM Eastern Daylight Time,

mimianne@... writes:

> does anyone know of a really active CFS listserv for a friend of mine?

[Guest guest]

,

Have you checked out this web page:

http://www.geocities.com/HotSprings/Spa/6772/virginia-index.html

These are articles about Lyme reported in Virginia put together by Art

Doherty. I hope this helps some.

I also found this one:

http://www.geocities.com/HotSprings/Spa/6772/virginia-patients.txt

Which is a list of support groups in VA, as well as people with Lyme disease

that you may be able to contact for advice. Let me know if you get help

here.

Hopefully,

Marta

--

>From: mimianne@...

>

>i can not imagine that they will give me a listing of ANY in my area. i

>have requested other " listings " and all begin OUTSIDE of VA. or when you

>actually call the listing, they have only seen 1 or 2 LD patients over the

>YEARS. it is a real problem here. actually the dr. in roanoke that told

me

>i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high

>hopes).

>

[Guest guest]

:

Is the woman you are referring to a Pruett? If so I will take her off my

list & tell Art to get her off his, too....

In a message dated 5/15/99 9:16:02 AM Eastern Daylight Time,

mimianne@... writes:

> yes, i have called one chick in Roanoke that is on the support list. her

> husband almost cussed me out! they have wanted to be removed for YEARS. i

> begged then for a dr. name, it was a BIG deadend and the rudest clinic i

> have spoken to as of yet. VERY BAD result from that. Art's stuff is

> EXCELLENT! honestly i had no luck w/the va. info. i have to go back and

> look at it and see what is listed.

[Guest guest]

yes, i have called one chick in Roanoke that is on the support list. her

husband almost cussed me out! they have wanted to be removed for YEARS. i

begged then for a dr. name, it was a BIG deadend and the rudest clinic i

have spoken to as of yet. VERY BAD result from that. Art's stuff is

EXCELLENT! honestly i had no luck w/the va. info. i have to go back and

look at it and see what is listed. but thank you for the help, you are a

great researcher!

>From: " J & M McCoy " <mlmccoy@...>

>

>,

> Have you checked out this web page:

>

>http://www.geocities.com/HotSprings/Spa/6772/virginia-index.html

>

>These are articles about Lyme reported in Virginia put together by Art

>Doherty. I hope this helps some.

>

>I also found this one:

>http://www.geocities.com/HotSprings/Spa/6772/virginia-patients.txt

>

>Which is a list of support groups in VA, as well as people with Lyme disease

>that you may be able to contact for advice. Let me know if you get help

>here.

>

>Hopefully,

>Marta

>

>--

>

>>From: mimianne@...

>>

>>i can not imagine that they will give me a listing of ANY in my area. i

>>have requested other " listings " and all begin OUTSIDE of VA. or when you

>>actually call the listing, they have only seen 1 or 2 LD patients over the

>>YEARS. it is a real problem here. actually the dr. in roanoke that told

>me

>>i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high

>>hopes).

>>

>

>

>------------------------------------------------------------------------

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>Visit our homepage and share with us how ONElist is changing YOUR life!

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>Please send privately messages unrelated to lyme.

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>You may substitute " unsubscribe " , " digest " , or " normal " for

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>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

she has been tested for lyme ... but we know what crock tests are. she does

not seem to have the LD symptoms but has some. i hope she will better

pinpoint her illness from getting involved in a listserv. thanks a bunch!!

>From: FIG4159@...

>

>Yes, I do. Really. But is she sure she has CFS and not Lyme (misdiagnosed as

>CFS)?

>

>Try this newsgroup:

>Alt.med.cfs

>

>and this website:

><A HREF= " http://www.cfids-me.org/ " >CFIDS, M.E., and Chronic Fatigue Syndrome

>Inf...

></A>

>

>

>

>In a message dated 5/14/99 11:11:54 AM Eastern Daylight Time,

>mimianne@... writes:

>> does anyone know of a really active CFS listserv for a friend of mine?

>

>------------------------------------------------------------------------

>ONElist members are using Shared Files in great ways!

>

>Are you? If not, see our homepage for details.

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

Must know if there is any cost involved in subscribing. Please advise ASAP

[Guest guest]

dear onelist,

please answer.. is one list FREE or is cost involved? must know.

[Guest guest]

Thank you . Am new to net and have been cautioned by daughter. sorry for

paranoia.Iam SO appreciative of place to learn/share info re: lyme

dab

[Guest guest]

to this list ......nope none nada.......it is free......we all work

cheap....lol......welcome to our warm and loving very smart little group......

Reid

[Guest guest]

Thanks for the welcome,

I have been having a hard time lately...Have chronic, relapsing lyme. First

bitten in 70's and tx for " tick bite fever " later dx with MS...bitten again

in 89 finally dx lyme in 94. Found a LLMD and have been getting better

slowly but crashed in march WHILE on hi dose oral abx. Am on 2nd week IV

rocephin plus oral and feel so sick. Insur co. is also giving me impossible

time.

All those years thinking I had MS were a nightmare.

All those doctors who DX everything wrong..esp a Dr. schoen at YNNH....

total nightmare

Has anyone ever heard of relapsing WHILE on abx???

Not to be dramatic, but sometimes I think I might die I feel so sick

would appreciate help, info. etc.....Thanks....dabs

[Guest guest]

Hi,

There is no fee of any kind related to this email list, or any list on

the Onelist website. We offer free advice, free support, and free humor

when someone finds something that tickles their fancy.

Most of us who subscribe to Lyme-aid are afflicted with Lyme disease, and we

often share our experiences and exchange information about what works for

us. I hope you will participate in the list by telling us your Lyme story,

welcome to the list.

Marta

>From: Dabret22@...

>

> Must know if there is any cost involved in subscribing. Please advise

ASAP

>

[Guest guest]

Welcome dab ... we're just here to share and listen and laugh and cry.

(Hopefully more laughing than crying.)

Ann

[Guest guest]

Hi Dabs,

I'm new to this list too. when I read your story I could relate completely.

I was dx with myasthenia gravis in 93, then MS in 95 and finally found a llmd

through a man who has lyme and who has gone to great effort to raise public

awareness in our town.

I was put on 300mg doxycycline and 1000mg biaxin for almost 2 years. After

the first few months I started to feel a bit better, and did well for another

year, but slowly the sx returned, until I realized I was having a major

relapse. I stopped taking the abx, since they weren't helping. My doctor

wouldn't change direction, and I finally found a local md, who my lyme friend

had told me about.

After convincing him that I don't have MS, he agreed to treat me with 12

weeks rocephin IV. 11 days into the treatment I had a huge herxheimer and

this lasted a couple of weeks. At 6 weeks into the treatment it happened

again. This one was so bad I really felt I could die. I know what you are

going through. I was so weak, I couldn't talk. I couldn't call anyone on

the phone. Couldn'lt use the computer, or even get out of bed, eat or do

anything.

It's a good thing you had the oral treatment first. I have always thought it

is better to start slow when one is so full of lyme. Did you have steroids

too, when you were dx w/ MS? That makes it even worse. I did.

I pray God will carry you through this. Do you have kids? Can they help?

I will pray for you.

I just ended the therapy and am actually feeling better, even though I still

don't have my strength back. Talk to your doctor too. If the herx is too

severe, maybe he/she can adjust your treatment temporarily.

best wishes,

Pat

[Guest guest]

Welcome Dabs, Thanks for sharing your story, and it sure is a tough one to

hear. Lots of people on this list have been misdiagnosed with MS and other

diseases as well. Sorry it took so long for you to get the proper treatment

you need. I was fortunate as I vividly recall finding my tick in my head,

and I was actually feeling pretty lousy before hand, yet, even with the

bulls eye rash and all the clinical symptoms, I have had doctors tell me

that that was just coincidental and I had something else. My bite is more

recent (1996) and there was much more information available about Lyme

disease and other tick diseases and I soon learned I knew more about this

illness than most of the doctors I saw.

I see you went to the notorious Dr Schoen, he is on our " Doctors never to

see List " I am sure you can figure out why now that you have come in

contact with the jerk. What kind of problem is your insurance company

giving you?

Lovette gave you excellent information about why you are feeling much

worse while on antibiotics, I also sent you a more detailed essay about

Herxing via private mail. I am surprised your doctor did not mention this

to you. There are many great books available about Lyme disease, I would

recommend you go to your local library and check out Forschner's

" Everything you need to know about Lyme disease and other tick-borne

diseases " It is chock full of information you really need to know.

Glad you made it to our list, I hope you start to feel better really soon,

Hugs,

Marta

>From: Dabret22@...

>

>Thanks for the welcome,

>I have been having a hard time lately...Have chronic, relapsing lyme. First

>bitten in 70's and tx for " tick bite fever " later dx with MS...bitten

again

>in 89 finally dx lyme in 94. Found a LLMD and have been getting better

>slowly but crashed in march WHILE on hi dose oral abx. Am on 2nd week IV

>rocephin plus oral and feel so sick. Insur co. is also giving me impossible

>time.

>All those years thinking I had MS were a nightmare.

>All those doctors who DX everything wrong..esp a Dr. schoen at YNNH....

>total nightmare

>Has anyone ever heard of relapsing WHILE on abx???

>Not to be dramatic, but sometimes I think I might die I feel so sick

>would appreciate help, info. etc.....Thanks....dabs

[Guest guest]

In a message dated 6/23/99 4:09:40 PM Eastern Daylight Time, Dabret22@...

writes:

<< Thank you . Am new to net and have been cautioned by daughter. sorry

for

paranoia.Iam SO appreciative of place to learn/share info re: lyme

dab

>>

Hi Dab! I understand and don't blame you for your paranoia! I tried to join a

couple of " so-called " support groups through the e-groups service and one of

them wanted to charge me money for joining a FREE service. It's always good

to question. Answers and explanations are freely part of this wonderful

support group. Welcome.

, New Bedford, MA.

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

Need a new FREE E-mail Address: www.phlexmail.net

[Guest guest]

Marta, I appreciate your including me in your list, but I can't deal with

all the email, and would appreciate your removing me. I don't know where I

filed the password, and therefore can't figure out how to unsubscribe. Would

you please let me know - and unsubscribe me if you can? I sent to the

address to unsubscribe and they returned it as a fatal error. I'm going out

of town and do NOT want to come home to 200 emails!

Thank you, and good luck.

Candy Sandford

[Guest guest]

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!!!!!!!

[Guest guest]

GOV.... OF COURSE I was given steroids when dx with MS.........But kept

running a feverand ALWAYS felt better on days I went to the Dentist and had

to take a handful of profilactic ammoxicillin......HMMMMMMM....Neuro did WB

and guess what???? gave my w/c to goodwill 2 mo after started tx. for lyme

in 94..... although feel as if I could use it now. Thanks for

prayers......2 girls,one a teacher in Fla. one moving to San Fran. soon.

Husband is very supportive but terrified of IV Dabs in conn.

[Guest guest]

Dear Marta,

I am overwhelmed by the warmpth and support I have rec. since joining

lyme-aid.....I had forgotten about herx. and now realize I am not

dieing...but I really thought I might.. did a wlll update and

everything...Husband is great, but doesn't really get itHow long does a herx.

last??? HAS anybody died from lyme or herx??

Dabs conn

[Guest guest]

schoen.......nuff said

Reid

[Guest guest]

dabs .....just feels like ur dying from herx.......or sometimes u wish u

would die while herxing.......i am attatching a great article on spirochettes

that u and ur hubby may be interested in

[Guest guest]

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