Re: Re: LYRA the neuroscientist!

[Guest guest]

Where is the proof????

I'm sorry but I have had enough. You want proof? DONT get treated. GO and

have a child. Then I PRAY you dont have your proof, but if you do, PROVE IT

YOURSELF!! Pissed-off-Pepi

[Guest guest]

If this is a suppoet group you are doing a really shitty

> jon of supporting me.

We have tried to support you, you have gone through hoops to try and support

you. But what you want, doesnt exist.

[Guest guest]

> I just am wondering if all this animosity is coming out because WE ALL

want PROOF and there just isn't any? We ALL are frustrated, tired of

fighting for everything? I think this is hitting pretty close to home for

most of us. Just my thoughts.

I dont think so, least not on my part. I'm pissed because she , and maybe

not purposefully, has acted like just a worried person. She asked the same

questions over and over, as if hoping that someone would give her the

miracle answer she wanted. Then she hops on saying she's a NeuroScientist.

With the way we protect our LLDMs its like she railroaded us into answering

her, and then said " oh btw, I wont believe anything you say, anyhow " I

feel personally hurt, here we were trying to help and she bit us.

[Guest guest]

> and others are telling me to never have children

I know Lyme is emotional, cant help but be, we fight for every thing we

can get. I for one, never said to never have children, what i said was to

make sure you are safe and clear of Lyme before you do. Pepi

[Guest guest]

In a message dated 07/05/2001 9:17:27 PM Eastern Daylight Time, rod@...

writes:

<< I'm pissed because she , and maybe

not purposefully, has acted like just a worried person. She asked the same

questions over and over, as if hoping that someone would give her the

miracle answer she wanted. Then she hops on saying she's a NeuroScientist.>>

What? I didn't get this doozy of an e-mail!

<< With the way we protect our LLDMs its like she railroaded us into answering

her, and then said " oh btw, I wont believe anything you say, anyhow " I

feel personally hurt, here we were trying to help and she bit us. >>

I agree with you- and think you have every right to feel hurt. I feel like

all our e-mails have been written with invisible ink, for all the

contemplation she affords them!

-Jules

Fall down seven times; stand up eight.

- Japanese proverb

[Guest guest]

I just am wondering if all this animosity is coming out because WE ALL want

PROOF and there just isn't any? We ALL are frustrated, tired of fighting for

everything? I think this is hitting pretty close to home for most of us. Just

my thoughts.

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

In a message dated 7/6/2001 3:29:57 AM Eastern Daylight Time,

lms@... writes:

> Excuse me...I went to graduate school for neuroscience (studying

> depression)but now I work in forensics...I am not posing as

> anything. I woke up with my face paralyzed and I am scared

> shitless. If this is a suppoet group you are doing a really shitty

> jon of supporting me. So what if I worked with depression!!!! That

> doesn't mean I know waht is going on with infectious diseases!!!!

> Geeezzz, when I need help and no onw will listen I come to a group

> and get people who attack me. How do you think I feel!!!!!!!!!!!

> You have just made me feel like shit...are you happy....first I hear

> that I can never have shildren and now I get this shit. Thanks for

> making my life even worse than it was. Not like I don't have nepough

> to worry about with half of my face paralyze. Thanks for making me

> feel like crap!!!!!!!!!

>

Lyra,

It's very simple...NOONE knows all the answers not even the scientist who are

supposedly working on this..... You can ask as many questions as you like but

noone on this board or off is going to be able to give you a diffinitive

answer.. Lyme disease reacts different in everyone.....There is miles and

miles of research, Go to the Web and start reading.. Read everything you can

get your browser on. People are responding to you with their own experiences.

What holds true for some doesn't hold true for others. This disease does not

discriminate but it does treat us all differently. As for there being a

cure.... There is NO cure... Scientists do NOT know how to rid the body

totally of the spirochete bacteria in Lyme Disease just as they don't know

how to rid the body of it in Syphlis. As for having children. Lyme disease is

passed from mother to child. Think about this. If you have Lyme disease and

there is no known cure but it IS possible to reach a full permanent remission

then if your unborn child feeds off of you to exsist ofcourse your'e going to

pass it on.. Now does this mean you should NOT have children? No it

doesn't... That desicion is between you and your doctor and noone here on

this board or off of it can make that decision for you.. There are no easy

answers to anything that has to do with this disease... Seeing as you come

from an educated backround in whatever subject it is which doesn't matter but

you obviously know how to research something, go on the web and research and

you can draw your own conclusions on what is best for you...

Robyn

[Guest guest]

For someone who claims to have a graduate degree, you sure can't spell worth

crap.

Hopefully, it's simply your illness and you're not an illiterate troll.

If you are serious ( and quit attacking those on the list) someone might give

you Art Doherty's website, which is packed with links to many, many studies.

BTW, I seem to have misplaced his URL? Anyone have it?

[Guest guest]

Very good answer!

Re: [ ] Re: LYRA the neuroscientist!

In a message dated 7/6/2001 3:29:57 AM Eastern Daylight Time,

lms@... writes:

> Excuse me...I went to graduate school for neuroscience (studying

> depression)but now I work in forensics...I am not posing as

> anything. I woke up with my face paralyzed and I am scared

> shitless. If this is a suppoet group you are doing a really shitty

> jon of supporting me. So what if I worked with depression!!!! That

> doesn't mean I know waht is going on with infectious diseases!!!!

> Geeezzz, when I need help and no onw will listen I come to a group

> and get people who attack me. How do you think I feel!!!!!!!!!!!

> You have just made me feel like shit...are you happy....first I hear

> that I can never have shildren and now I get this shit. Thanks for

> making my life even worse than it was. Not like I don't have nepough

> to worry about with half of my face paralyze. Thanks for making me

> feel like crap!!!!!!!!!

>

Lyra,

It's very simple...NOONE knows all the answers not even the scientist who are

supposedly working on this..... You can ask as many questions as you like but

noone on this board or off is going to be able to give you a diffinitive

answer.. Lyme disease reacts different in everyone.....There is miles and

miles of research, Go to the Web and start reading.. Read everything you can

get your browser on. People are responding to you with their own experiences.

What holds true for some doesn't hold true for others. This disease does not

discriminate but it does treat us all differently. As for there being a

cure.... There is NO cure... Scientists do NOT know how to rid the body

totally of the spirochete bacteria in Lyme Disease just as they don't know

how to rid the body of it in Syphlis. As for having children. Lyme disease is

passed from mother to child. Think about this. If you have Lyme disease and

there is no known cure but it IS possible to reach a full permanent remission

then if your unborn child feeds off of you to exsist ofcourse your'e going to

pass it on.. Now does this mean you should NOT have children? No it

doesn't... That desicion is between you and your doctor and noone here on

this board or off of it can make that decision for you.. There are no easy

answers to anything that has to do with this disease... Seeing as you come

from an educated backround in whatever subject it is which doesn't matter but

you obviously know how to research something, go on the web and research and

you can draw your own conclusions on what is best for you...

Robyn

[Guest guest]

Okay guys I missed this one. Lyra, first the side of your face will probably not

be paralized forever. I should know I woke up and had it 3 times in one day, It

is the Lyme mimmicing Bells Palsey, second the way you are typing and by the

anger in this letter for what seems to be no real reason you need to see if it

has gone neuroligical. I'm not picking on you I am speaking for experience. Mine

is neurological, and I use to flip for no real reason also, sometimes I still

do. All it seams that Robyn was trying to say is that we suppore from our own

experiences. Maybe you should check our arcives(spelling might be wrong)before

you start yelling about support.

S.

Re: [ ] Re: LYRA the neuroscientist!

> Very good answer!

> Re: [ ] Re: LYRA the neuroscientist!

>

>

> In a message dated 7/6/2001 3:29:57 AM Eastern Daylight Time,

> lms@... writes:

>

>

> > Excuse me...I went to graduate school for neuroscience (studying

> > depression)but now I work in forensics...I am not posing as

> > anything. I woke up with my face paralyzed and I am scared

> > shitless. If this is a suppoet group you are doing a really shitty

> > jon of supporting me. So what if I worked with depression!!!! That

> > doesn't mean I know waht is going on with infectious diseases!!!!

> > Geeezzz, when I need help and no onw will listen I come to a group

> > and get people who attack me. How do you think I feel!!!!!!!!!!!

> > You have just made me feel like shit...are you happy....first I hear

> > that I can never have shildren and now I get this shit. Thanks for

> > making my life even worse than it was. Not like I don't have nepough

> > to worry about with half of my face paralyze. Thanks for making me

> > feel like crap!!!!!!!!!

> >

>

> Lyra,

> It's very simple...NOONE knows all the answers not even the scientist who

are

> supposedly working on this..... You can ask as many questions as you like

but

> noone on this board or off is going to be able to give you a diffinitive

> answer.. Lyme disease reacts different in everyone.....There is miles and

> miles of research, Go to the Web and start reading.. Read everything you can

> get your browser on. People are responding to you with their own

experiences.

> What holds true for some doesn't hold true for others. This disease does not

> discriminate but it does treat us all differently. As for there being a

> cure.... There is NO cure... Scientists do NOT know how to rid the body

> totally of the spirochete bacteria in Lyme Disease just as they don't know

> how to rid the body of it in Syphlis. As for having children. Lyme disease

is

> passed from mother to child. Think about this. If you have Lyme disease and

> there is no known cure but it IS possible to reach a full permanent

remission

> then if your unborn child feeds off of you to exsist ofcourse your'e going

to

> pass it on.. Now does this mean you should NOT have children? No it

> doesn't... That desicion is between you and your doctor and noone here on

> this board or off of it can make that decision for you.. There are no easy

> answers to anything that has to do with this disease... Seeing as you come

> from an educated backround in whatever subject it is which doesn't matter

but

> you obviously know how to research something, go on the web and research and

> you can draw your own conclusions on what is best for you...

> Robyn

>

>

>

[Guest guest]

.. No, croup is NOT lyme solely, but it can be one

> symptom

When I was about 3, mom said I had almost a year of unexplained fevers and

rashes. I also had croup alot. Other than that I was the healthiest

kid/young adult around. An accident waiting to happen, yes, LOL but

otherwise healthy. Pepi

[Guest guest]

In a message dated 7/7/01 8:01:08 PM Central Daylight Time,

dixichik@... writes:

<< As for having children. Lyme disease is

passed from mother to child. >>

It CAN be. I think you are doing her a disservice by making such an

inclusive statement. Your statement means it ALWAYS does....it doesn't.

[Guest guest]

> Thank you for this very optimistic post. I have my symptoms going

> away...my Bell's Palsy...and I am feeling much better. I am going to

> wait a while after it disappears and then try and conceive.

So then you are going to concieve without bothering to get treatment???

[Guest guest]

In a message dated 7/9/01 2:47:56 AM Eastern Daylight Time, golfdawg@...

writes:

> It CAN be. I think you are doing her a disservice by making such an

> inclusive statement. Your statement means it ALWAYS does....it doesn't.

>

>

Do you know of any mother who has Lyme disease before she has children and

then her children are born withOUT it? I don't..... If Lyme disease is in our

blood streams and the fetus feeds off our blood streams how would it NOT be

passed?

[Guest guest]

In a message dated 7/9/01 5:35:32 AM, kimsak2000@... writes:

<< Hi,

I had 2 children while I had Lyme, but I didnt know

that I had it. I'm so worried about my 2 boys. My 4

1/2 year old has muscle weakness, speach problems due

to poor muscle tone in his face, outbursts, a lot of

allergies that seem to be getting worse, and some

aches & pains once in a while & also headaches. My 3

year old had seemed ok, but now has sensitivity to

noise from time to time, he throws up for no apparent

reason, and has had some knee pain, & ear pain when

there was no infection present. I have heard that

sometimes problems dont start showing up until they

are older. I'm so worried about them.

I want to take them to Dr.J in Conn., but havnt

because I'm not feeling well & money. I think that I

will take them to there regular Dr. this week & have

them tested again & also get a referral for a

peddiactric neurologist. If I dont get any where that

way then I will make an appiontment with Dr.J in Conn.

I just dont know where I will get that kind of money.

I just hope that they dont have this horrible illness.

But I think that they probably do, atleast my 4 1/2

old. Take care, Kim S. >>

Kim-

As a mom of kids with lyme, including my 6 yr old whom has had this AT LEAST

since he was 4, don't wait any longer. Your children will have difficulty

with the most important time in their school careers, kindergarten. Please

write me privately and I can help you with suggestions.

sue in nj

sue massie

[Guest guest]

In a message dated 7/9/2001 8:36:10 AM Eastern Daylight Time,

granscot@... writes:

> . I hope and pray this is one case where we have this

> terrible disease, for whatever reason, not crossing over from Mother to

> child.

> Coleen

>

>

I pray that too......

[Guest guest]

In a message dated 7/9/01 5:35:52 AM, granscot@... writes:

<< The 4yr old, soon to be 5

yrs old at age 2 was hospitalized for a week with severe croup which I would

think would/could have been a shock trigger but he did get over that. >>

My children ALL had this too. No, croup is NOT lyme solely, but it can be one

symptom. Allergies, asthma, mood swings, depression, excessive crankiness,

insomnia, are some of the symptoms that small ones display but IT IS SO HARD

TO RECOGNIZE!!!! I did have my baby tested at age 4, Western blot, negative.

I finally spent the big $$$, $399 for Igenex a few months ago, when he turned

6 and HIGHLY positive PLUS babesia.

He has had this for a few yrs., MAYBE born with it.

sue in nj

sue massie

[Guest guest]

----- > No, that is not what I said.

>

> >

> > So then you are going to concieve without bothering to get

> treatment???

I am sorry if that is how I took your post, you mentioned only waiting for

symptoms to leave, then conceiving. Was hoping you didnt mean what you

had stated. Pepi

[Guest guest]

In a message dated 07/09/2001 6:51:47 AM Eastern Daylight Time,

LymeDizzy@... writes:

<< Do you know of any mother who has Lyme disease before she has children and

then her children are born withOUT it? I don't..... >>

So far my son has tested negative, no symptoms. He is only 2, but I'm

optimistic.

-Jules

Fall down seven times; stand up eight.

- Japanese proverb

[Guest guest]

Yes, I do know a Mother, who had Lyme disease, who had her children afterwards

and so far they have tested NOT TO HAVE LYME DISEASE. True there is

not any conclusive test out there yet but they have been tested with what there

is out there and so far they are not infected. Ages of children are

9, 4, 3. They were also breast fed. OF course grandma is always watching for any

signs that they could be. In this family BOTH mother and father are

infected as well as me, the grandmother so I believe if children were having any

signs we would have picked up on it. OF course we also know the

disease can lay dormant too so its a waiting game as far as I am concerned but

for now I can reply they are not infected. The 4yr old, soon to be 5

yrs old at age 2 was hospitalized for a week with severe croup which I would

think would/could have been a shock trigger but he did get over that.

His father, as a baby also had severe croup so this wouldn't be considered

something unusual. I hope and pray this is one case where we have this

terrible disease, for whatever reason, not crossing over from Mother to child.

Coleen

LymeDizzy@... wrote:

> In a message dated 7/9/01 2:47:56 AM Eastern Daylight Time, golfdawg@...

> writes:

>

> > It CAN be. I think you are doing her a disservice by making such an

> > inclusive statement. Your statement means it ALWAYS does....it doesn't.

> >

> >

>

> Do you know of any mother who has Lyme disease before she has children and

> then her children are born withOUT it? I don't..... If Lyme disease is in our

> blood streams and the fetus feeds off our blood streams how would it NOT be

> passed?

>

>

[Guest guest]

Sue,

They are having no symptoms but of course I continue to watch them very closely.

I am babysitting them 3 hrs a day so I get a real good look. So far

they are average young boys and I wish we had the money to get their DNA checked

with Bowen labs but we don't. Their Daddy, my son, who also has

Lyme is doing well to put food on the table as his job is long, hot hours and

many times he goes home and goes to bed so he is able to work the next

day. I pray daily my grandsons will be the exception and that it near rears its

ugly head.

Thank you for being so concerned and should there ever be a reason to suspect I

will, of course let the list know-we need all the data we can get.

Samm, will send URL for stimulator later, must leave for appt this am

Coleen

Ssadlermas@... wrote:

> In a message dated 7/9/01 5:35:52 AM, granscot@... writes:

>

> << The 4yr old, soon to be 5

> yrs old at age 2 was hospitalized for a week with severe croup which I would

> think would/could have been a shock trigger but he did get over that. >>

>

> My children ALL had this too. No, croup is NOT lyme solely, but it can be one

> symptom. Allergies, asthma, mood swings, depression, excessive crankiness,

> insomnia, are some of the symptoms that small ones display but IT IS SO HARD

> TO RECOGNIZE!!!! I did have my baby tested at age 4, Western blot, negative.

> I finally spent the big $$$, $399 for Igenex a few months ago, when he turned

> 6 and HIGHLY positive PLUS babesia.

> He has had this for a few yrs., MAYBE born with it.

> sue in nj

> sue massie

>

> 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

>

>

[Guest guest]

Hi,

I had 2 children while I had Lyme, but I didnt know

that I had it. I'm so worried about my 2 boys. My 4

1/2 year old has muscle weakness, speach problems due

to poor muscle tone in his face, outbursts, a lot of

allergies that seem to be getting worse, and some

aches & pains once in a while & also headaches. My 3

year old had seemed ok, but now has sensitivity to

noise from time to time, he throws up for no apparent

reason, and has had some knee pain, & ear pain when

there was no infection present. I have heard that

sometimes problems dont start showing up until they

are older. I'm so worried about them.

I want to take them to Dr.J in Conn., but havnt

because I'm not feeling well & money. I think that I

will take them to there regular Dr. this week & have

them tested again & also get a referral for a

peddiactric neurologist. If I dont get any where that

way then I will make an appiontment with Dr.J in Conn.

I just dont know where I will get that kind of money.

I just hope that they dont have this horrible illness.

But I think that they probably do, atleast my 4 1/2

old. Take care, Kim S.

--- LymeDizzy@... wrote:

> In a message dated 7/9/01 2:47:56 AM Eastern

> Daylight Time, golfdawg@...

> writes:

>

>

> > It CAN be. I think you are doing her a disservice

> by making such an

> > inclusive statement. Your statement means it

> ALWAYS does....it doesn't.

> >

> >

>

> Do you know of any mother who has Lyme disease

> before she has children and

> then her children are born withOUT it? I don't.....

> If Lyme disease is in our

> blood streams and the fetus feeds off our blood

> streams how would it NOT be

> passed?

>

>

=====

Take care and have a nice day !!! Kim S. kimsak2000@...

__________________________________________________

[Guest guest]

Dear Friends,

When " officially " diagnosed in 1995, I asked the question of my LLMD about the

possibility of passing the disease on to my kids, since we can determine that I

was infected in 1958. I have 3 grown children, only one of whom presents with

any symptoms that could be attributed to Lyme. The oldest (35) is a very

healthy, atheletic son, who has never been sick a day in his life except for

minor bouts with the common childhood diseases. One daughter does have migraines

and an irregular heartbeat (mitrovalve prolapse), but no other notable health

problems. The other child has had many of the same problems as I do, especially

with unexplainable joint and muscle pain, and a history of bipolar disorder (no

longer under treatment and no symptomology) and tests positive on 29 of Dr. B's

checklist. I am concerned about her. At one time she was willing to go for a

test, but when they decided to go for full custody of her step-daughter, she

didn't want to present with any health concerns to block the way. I am hoping

she will get tested before she decides to have children of her own.

My LLMD said (these are laymen terms I'm using) that to transmit the disease

while pregnant, you would need to be in a " high active state " during the

pregnancy. That just being pregnant does not mean you will transmit the

disease. I had a severe " episode " of illness while pregnant with the one child

that doctors could not explain and I could not be treated for because I was

pregnant. Had mouth sores resembling measles. Coated my throat, tongue, gums,

roof of the mouth, and under the tongue. Open, oozing sores, with scabs. All

they could do at the time was give me a bottle of children's vitamins with iron

to rinse my mouth with several times a day to heal the sores. Couldn't eat, talk

or swallow hardly. Whether that was good science or not, I don't know, but that

was years ago and no one seemed to know what the infection was at the time. It's

possible that this was a Lyme-related infection, but it was so long ago and I

cannot remember all the specifics to relate to my doctor and it's not

well-documented in my medical records. (That doctor is now deceased.)

Just my experience and what I've been through and been told. Overall, I have

very healthy children. The one that I am concerned about goes through long

periods with no symptomology whatsoever, and then these unexplained symptoms

return.

Love ya, Rose

From: LymeDizzy@...

Subject: Re: Re: LYRA the neuroscientist!

In a message dated 7/9/01 2:47:56 AM Eastern

Daylight Time, golfdawg@...

writes:

> It CAN be. I think you are doing her a

disservice by making such an

> inclusive statement. Your statement means it

ALWAYS does....it doesn't.

>

>

Do you know of any mother who has Lyme disease

before she has children and

then her children are born withOUT it? I

don't..... If Lyme disease is in our

blood streams and the fetus feeds off our blood

streams how would it NOT be

passed?

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*My Lyme Disease Story & Website*

http://www.angelfire.com/tx3/RoseWriter

---------------------------------

[Guest guest]

In a message dated 7/9/01 1:16:37 PM, pokecheck8@... writes:

<<

So far my son has tested negative, no symptoms. He is only 2, but I'm

optimistic.

-Jules

>>

jules-

It will become more obvious around 4-5 yrs old. He will have trouble learning

the ABC's, anger outbursts, etc. IF he has it. My experience as well as many

others.

sue in nj

[Guest guest]

Can we please change the name of this thread now? Lyra has asked lots of

questions and people are answering them but all under this thread. It would be

helpful if each question had it's own thread name.

Just a thought.

Jean