re:Re: Shruti Clearing doubts of group members

[Guest guest]

Hi Shruti,

First of all, please stop emailing me privately with MULTIPLE emails. I have a

life and 5 children and I will get back to you when I can. Please demonstrate

some self control. Second of all, let's talk special needs. While everyone on

here has a child with autism, I have a child with autism AND another child with

LISSENCEPHALY. Google it. Feeding tubes. Wheelchairs. Newborn mental

development. Oxygen monitor. Nursing staff. I do understand what it means to be

a special needs parent on more than one level.

My question here for everyone to consider is this: If this is a group for

families with kids with lyme induced autism, why are you requesting info because

you suspect your child of having lyme disease? Shouldn't the admin have screened

you better, asked you why you wanted to join this group, asked you has your

child been a confirmed diagnosis of lyme induced autism? Perhaps it is I who

misunderstood this group as being for families with lyme induced autism, perhaps

it is not? For that I apologize. I am trying to keep this group safe, for

reasons stated below. Why are you posting questions that are ambiguous and overy

vague? They raised a red flag with me because you did not disclose any personal

information to the group about your background, the background of your child in

question, and it sounded very suspicious. When most people join a group they

usually introduce themselves and their issue at hand. Perhaps the issue here is

one of articulating exactly what you mean to say? I think the answer is simple,

you need to get yourself a good LLMD and get into some testing and treatment for

your daughter, perhaps get yourself tested as well. Research lyme disease. I

have had lyme for 16 years and am very involved in the lyme communities, real

and internet-based. 4 of my five children have lyme disease, as does my husband.

I consider myself fairly educated on the subject. And because of my involvement,

I have seen numerous occasions both with the lyme disease online groups and with

the lissencephaly groups that I belong to where people have fake accounts, fake

children, and fake illnesses, in which they are attempting to extract

information from people sharing medical information in the group forums. I

personally do not understand why people do this, is it insurance companies,

employers, who knows, but it happens, and alot of members get very upset that

their personal info, stories are now at the mercy of that person. My advice to

you is to share more of your personal stories dealing with lyme and autism so

you don't appear suspicious. I would also recommend no pregnancies before you

get tested for lyme yourself, because it is highly probable that you will pass

it on to your newborn.

I do publicly apologize for calling this person out to the group, I did it in

the best interests of this group. I reviewed posts from multiple groups I belong

to and I realized that she is posting to this one group only, that I know of,

and only this group, and for that, Shruti, I apologize, my initial thoughts were

that you posting to a couple of different groups. With so many groups, I did get

confused, and so for that I will be more attentive in the future. Thanks to

everyone for listening. Shruti, best of luck getting your daughter a LLMD and

into treatment.

-

[Guest guest]

,I thought this group was for support for one another ,not to be

mean to one

another.

UH,MAYBE HAVE SOME SELF CONTROL YOURSELF

PLEASE! Thanks,Tammy F.

Hi Shruti,

First of all, please stop emailing me privately with

MULTIPLE emails. I have a life and 5 children and I will

get back to you when I can. Please demonstrate some self

control. Second of all, let's talk special needs. While

everyone on here has a child with autism, I have a child

with autism AND another child with LISSENCEPHALY. Google

it. Feeding tubes. Wheelchairs. Newborn mental

development. Oxygen monitor. Nursing staff. I do

understand what it means to be a special needs parent on

more than one level.

My question here for everyone to consider is this: If this

is a group for families with kids with lyme induced

autism, why are you requesting info because you suspect

your child of having lyme disease? Shouldn't the admin

have screened you better, asked you why you wanted to join

this group, asked you has your child been a confirmed

diagnosis of lyme induced autism? Perhaps it is I who

misunderstood this group as being for families with lyme

induced autism, perhaps it is not? For that I apologize. I

am trying to keep this group safe, for reasons stated

below. Why are you posting questions that are ambiguous

and overy vague? They raised a red flag with me because

you did not disclose any personal information to the group

about your background, the background of your child in

question, and it sounded very suspicious. When most people

join a group they usually introduce themselves and their

issue at hand. Perhaps the issue here is one of

articulating exactly what you mean to say? I think the

answer is simple, you need to get yourself a good LLMD and

get into some testing and treatment for your daughter,

perhaps get yourself tested as well. Research lyme

disease. I have had lyme for 16 years and am very involved

in the lyme communities, real and internet-based. 4 of my

five children have lyme disease, as does my husband. I

consider myself fairly educated on the subject. And

because of my involvement, I have seen numerous occasions

both with the lyme disease online groups and with the

lissencephaly groups that I belong to where people have

fake accounts, fake children, and fake illnesses, in which

they are attempting to extract information from people

sharing medical information in the group forums. I

personally do not understand why people do this, is it

insurance companies, employers, who knows, but it happens,

and alot of members get very upset that their personal

info, stories are now at the mercy of that person. My

advice to you is to share more of your personal stories

dealing with lyme and autism so you don't appear

suspicious. I would also recommend no pregnancies before

you get tested for lyme yourself, because it is highly

probable that you will pass it on to your newborn.

I do publicly apologize for calling this person out to the

group, I did it in the best interests of this group. I

reviewed posts from multiple groups I belong to and I

realized that she is posting to this one group only, that

I know of, and only this group, and for that, Shruti, I

apologize, my initial thoughts were that you posting to a

couple of different groups. With so many groups, I did get

confused, and so for that I will be more attentive in the

future. Thanks to everyone for listening. Shruti, best of

luck getting your daughter a LLMD and into treatment.

-