Make your own free website on
Since the vicious attacks and game playing is continuing at NDRF even today months after I was banned for asking questions about the private email controls exerted behind the scenes,
I am posting these emails for anyone interested.
Those who are now complaining about me are just not that innocent.  Read for yourself:

From:  Kathy Bxxxxxxx <> Save Address - Block Sender
 To: Save Address
 Subject:   NDRF
 Date:   Wed, 23 Aug 2000 13:16:09 -0400 (EDT)


Maybe I should keep my nose out of this but the whole situation has upset me
beyond belief, and I believe it's very unfair to you and XXXXXX. People, and
one in particular, at NDRF have become extreme troublemaking people who
don't seem to want answers to their questions, potential solutions or tests
for their problems, and can't STAND when someone has a difference of opinion
with them, so they run to Dan and Linda Smith (at least initially). Well,
the person has now transferred to Fainter's United to go after you and
XXXXXX. And guess who it is? It's Sophia from NDRF who calls herself Agnes.
And now she posts about how everyone should stop bashing NDRF. Well, if
anyone needs to be banned from NDRF, it's her, in my personal opinion. I
have discussed her with Dan and Linda, in addition to a number of other
people who post on NDRF and e-mail me privately. She starts trouble (and has
done it with me, as well), says rude and upsetting things, and then if you
strike back, especially with factual information she doesn't like, she
becomes the pitiful person you abused. She is all over the internet in
various medical forms, always with all that $*&()*&@)#& stuff that makes me
crazy, comments about taking all kinds of drugs in which she seems to revel,
like Valium, Xanax, Klonopin---I could go on and on.

I just felt you should know who this person is. I also ask that you keep it
between us. I have asked for guidance from the moderator of Fainter's United
regarding this situation.

Regarding the Levy's---it is my understanding that Linda Smith dropped out
and Levy's basically had to take over (I see they are on Fainter's United as
well). However, I was told that the deletions, denied access, etc., were
through the Smith's although the person telling me this could be mistaken,
of course, but is usually very reliable.

I wish you the best; if you want to get in touch with me, please feel free.
This whole thing makes me SO uncomfortable that I'm not even listing my
profile so that Sophia can't haunt me, as well!!

Take care, God bless, and know there are people who care-like me!



From:   Kathy Bxxxxxxx <> Save Address - Block Sender
 To: Save Address
 Subject:   Your e-mail
 Date:  Thu, 24 Aug 2000 14:33:38 -0400 (EDT)

Hi, Molly:

No, I haven't shared the information with XXXXXX, but I did express my
concerns to photobug (Dianne?), and gave her my permission to inform whoever
the actual moderator of Fainter's United is of the information I gave to
you, as well.

I sure don't want to cause any trouble, but I just honestly feel that you
have already been through enough. I also shared my concerns with a few
people I am rather close with who do post at NDRF (the nice people), and
they agreed with me. Some of them feel that Agnes/Sophia has intimidated too
many people already (going back close to a year), and they are afraid to
confront her because she goes on these "tangents" which are oftentimes
actually unintelligible. I may have told you that she has attacked me a few
times because I am a nurse and have worked in medicine for 18 years, and
have become very knowledgable about autonomic dysfunction.

The NDRF forum has changed drastically. I honestly can't say what happened
other than some of the newer people (including Sophia/Agnes) are very rude
at times. One of my biggest gripes is when people actually TELL others what
to take, what to do, ingest tons of salt, salt tablets, etc., not knowing
what it might do to someone else. For example, t was told to me that I
should give my son ginger root to aid in digestion. If I didn't know better
and wasn't fortunate enough to have the training that I do, I could have
made him 10 times worse because biopsies indicate his stomach is like raw
meat, and ginger root would very likely have caused internal bleeding! A
suggestion to take up with one's doctor is one thing--to tell someone what
to take is another. And with no disrespect to ANYONE, so many people are
like sheep, desperately looking for a shepherd to lead them and tell them
what to do because so many physicians are unfamiliar with these conditions,
let alone how to treat them.

The NDRF forum no longer has much to offer, I agree. The information on the
main page, left side, about ANS disorders, etc., is very informative for
"newbies." After that, it's basically up to us. One suggestion I would like
to make to you is to try and get your hands on a copy of the book called
"Clinical Autonomic Disorders" by Phillip Low, M.D., of the Mayo Clinic. If
you can also get your test results, it's a wonderful way to compare the
results with what's in the book and come up with some fascinating insight
into your own condition. The book is technical, but with test results to go
along with it, from blood to urine to tilt table to EKG to MRI, etc., it
gets pretty easy to figure out what's wrong, and, like me, become the
"mother from hell" in insisting on what should be done.

I don't know David Levy at all; hadn't even heard of him until the past few
days so I can't be of any help there. I heard that Linda Smith couldn't
stand the problems going on anymore, and that's all I know about it. I
assume Mr. Levy is now the moderator? Are the Smith's completely done now? I
don't know how all of this works. I only go into the forum for information
and to try and help others with what I have learned, although I have
occasionally been nearly damned to hell for trying to help those who don't
want to get better. Most do, but a few don't.

At any rate, please feel free to get in touch anytime. And also, please know
how bad I feel about what has happened. Do you think I should get in touch
with XXXXXX, or is it better to let sleeping dogs lie? As I said, I don't
want to start any trouble but my heart went out to you, in particular,
because I saw one or two of your posts before everything was deleted at
NDRF, and I felt SO bad for you, because it was obvious to me you were
reaching out for help, and needed it, only to get slapped in the face.

By the way, I'm a single mom, making decent money but strapped with
thousands of dollars of unpaid medical bills for Jonathan, with relatively
little child support and an ex-husband who refuses to help with medical
bills and hasn't seen Jonathan in over two years. So, believe me, I
understand your feelings about the money situation. I can't afford the
tapes, either, and would have liked to have seen them, but no way can I
afford it. I never did hear anything about the free handouts, either--but
then again, don't feel too bad, because I, too, am "out of the loop".

Let me know how you feel about this, if you don't mind, and please do feel
free to keep in touch. Again, I'm sorry about what has happened from a few
rather vile people. You certainly don't deserve it, and neither does XXXXXX.

God bless,


From:  Kathy Bxxxxxxx <> Save Address - Block Sender
 To:  Molly Brown <> Save Address
 Subject:   XXXXXX
 Date:  Fri, 25 Aug 2000 14:28:23 -0400 (EDT)

Hi, Molly:

I did send a message to XXXXXX about what was going on and who was behind
it. Like I said, it's probably none of my business but I honestly felt awful
about what happened to both of you. I wish I could have seen all the posts
myself so I could better figure out what when on. I know nothing about the
Levy's and had no idea that they were moderating NDRF until just a few days
ago, so I can't answer for that part, either. Not much help except I know
who Agnes is, and I know how she is. A wrong is a wrong and I feel you and
XXXXXX were treated very badly.

I hope you have a nice weekend.



From:   Kathy Baxxxxxxx <> Save Address - Block Sender
 Subject:   FWD: The Storm
 Date:   Tue, 29 Aug 2000 09:35:02 -0400 (EDT)

------Original Message------

Subject: The Storm

Good morning:

Just wanted you to know I'm thinking of you and hoping you will have a great
day full of God's blessings.

-Kathy and Jonathan


From:  Kathy Bxxxxxxx <> Save Address - Block Sender
 To:   Molly B <> Save Address
 Subject:  NDRF
 Date:  Thu, 14 Sep 2000 16:43:42 -0400 (EDT)

Hi, ladies:

I had to tell you about this. Another topic was posted on the NDRF forum by
the woman who was actually instrumental in having you both "banned", the
same one who followed you over to Fainter's United to do more damage, Agnes,
aka Sophia at NDRF. Well, she posted a topic about working vs. being
disabled (as if people who are disabled can't sometimes work). The purpose
of the topic was that she reprinted a "scale" of sorts, representing how
disabled a person is by ANS dysfunction, primarily of the orthostatic type.
Then she went on to list how, of course, she is SO disabled (yet in other
posts, she refers to going to the gym, aerobics class, yoga, getting her
hair streaked, climbing 3 flights of stairs with heavy bags of groceries,
etc., etc.)

Well, I took issue with the SCALE and its classifications. For one thing,
it's over 3 years old and I am fairly sure it's not even used any longer,
but can't swear to it. I made no comment whatsoever to her. Other people
chimed in, saying they either didn't fit the scale, the scale was too hard
to figure because symptoms and conditions change on a daily basis, let alone
sometimes an hourly one, etc. It was very interesting; just people
expressing their freedom of speech and their ideas and personal experience.

Well, she went off on me and you would not believe what she did. (And I said
nothing to her or about her except that a scale like this can make for a
"contest" between individuals-no reference to her-and that I felt it might
be outdated.) She e-mailed me PRIVATELY, without my permission, and
absolutely raled at and threatened me for THREE pages! She threatened to
have me banned from NDRF "like we did 3 other people" - sound familiar - she
actually QUOTES me as stating things that are not even in my posts, she
edited and then deleted almost all the really awful things she said to me,
and to others in general, in the topic area so that the moderators couldn't
see it, and she ORDERED me to go and delete everything I had written. People
are still writing in today making their own little comments and remarks, not
even knowing there was, in HER mind, a conflict because she deleted
everything she wrote. So, the rest are just going about their merry
business, none the wiser.

I'm telling you this woman is absolutely crazy. Thank God she doesn't live
in my state because I am honestly afraid of her after what she wrote to me.
It's unbelievable. Not only does she make thinly veiled threats, she tells
me what to do, tells me my son can't be sick if he goes to school, that no
one can force themselves to do anything if they actually have this
disorders, she even refers to "being attacked" by YOU guys and informs me
that if "you have a problem with a post, you must contact the person
directly and keep any disagreement with a post off the boards." Who the heck
does she think she is? Wonder if she has ever heard of freedom of speech and

I just thought you might be interested. I don't know what kind of authority
she has with NDRF, if any-it may all be in her head-but she does refer to
being responsible for having you banned. And now she's after me. You know
why? Because we don't agree with 100% of everything she says or posts, or
because we know more than she does. That and there is a serious addiction

Let me know your thoughts, if you feel like it. I admit I am horrified and
actually terrified.



From:    Kathy Bastasich <> Save Address - Block Sender
 To:   Teresa Betts <> Save Address
 Subject:    FWD: WHo do you think you are?
 Date:   Fri, 15 Sep 2000 00:53:31 -0400 (EDT)

This is what I got after I e-mailed you. I mentioned someone going after me
in response to someone at MGH saying how much I helped them and talked about
how upset I was. As you can see, I am forwarding everything to Linda and
Dan. If I am banned, then so be it. She wins. I absolutely can't deal with
this anymore. And there are more waiting for me to open. Enough is enough.

------Original Message------
From: Kathy Bastasich <>
Sent: September 15, 2000 4:49:02 AM GMT
Subject: FWD: WHo do you think you are?

Dear Linda and Dan:

I am going to forward to you the e-mails I have received from this person
who initiated contact with me. I only wish you had seen the posts she
deleted from the NDRF boards. I am also going to forward the e-mail she sent
me last night, using the NDRF name to threaten me, yes, with being banned,
etc. She is obviously very disturbed. You can easily read by my posts on the
subject of "working vs. disability" or whatever it is called, tha there were
no comments made towards her nor against her.

If NDRF is a discussion forum, why does she not allow us to discuss things
that are posted there?

It has also been suggested to me by an administrator at Lycos that I forward
her e-mails to the administrator of my e-mail system as he felt they are of
a threatening nature.

I don't understand what type of authority she has at NDRF to make the
comments she does and insinuate that she is involved in getting people
"banned." I have never used her name in anything. She has greatly upset me
and I don't think it should be tolerated. She is the last one who needs to
speak of forum etiquette when she constantly uses internet swearing in her
posts. She has invaded my privacy and I do find her e-mails to me of an
extremely threatening, abusive and intimidating nature.

What can be done about this or has she succeeded in having me banned, too?
After she deleted the awful things she said off her posts in NDRF, people
continued on with their feelings and comments, not even knowing that it was
her posts (for those who didn't see them, I should say) that involved a "cat
fight", as she puts it.

I have spent tonight on the phone with my son's attending physician at Mayo
Clinic and am in no mood to have her invade my privacy with this nonsense.
She is upsetting a host of people at NDRF and I have their e-mails to prove
it. There is such a thing as freedom of speech and expression, according to
the Constitution, and yet as you will see in the e-mail that follows this
one, she believes she has the right to take that away from people.

Thanks for your input. This is extremely distressing. I don't appreciate
being sworn at in the privacy of my own home by someone who obviously has a
vendetta against ME and, by what was posted and commented upon, against my
child. She wants to enter into some sort of contest with everyone as to who
is the sickest and that is not the purpose of the forum.

Thank you. You have been wonderful to me, and to Jonathan.


------Original Message------
To: Kathy Bxxxxxxx <>
Sent: September 15, 2000 7:00:08 AM GMT
Subject: WHo do you think you are?

I think NOT! You may not mention me by name but others who read MGH and
NDRF informed me of what you posted and I just read it. I am NOT AMUSED.

I have never threatened YOU or ANYBODY via email or anything else. I
talked with Linda Smith this morning and she was cool about everything
and I told her what I tried to explain in last nights email.

Tonight, I even sent you an  apology saying I was sorry if I was too
harsh and you have the audacity to go around saying I THREATENED
my character on the freaking NDRF BOARDS?????and others at the drop of a

That was before  I heard about the stunt you pulled and are saying on
the MGH boards.

YOUR passive aggressive behavior really hurts some feelings of those
critically ill!!(I have the emails to prove that one,too)

I simply asked you to remove your postings in the thread I started so
that others would not think there is hostility growing on the NDRF
site.How is that a threat???

Spreading malicious gossip about me will NOT be tolerated at NDRF or any
other site you know darn well I visit.

You may think your passive aggressive stuff is FUN and that is how you
'get off': lecturing how others should feel with this illness. You have
NO IDEA how this *&^&%^ illness feels. Yes, your son may be sick but you
have no right to throw bald-face unmitigated lies  all over the place.

If you EVER try to pull this cr** at NDRF, I will raise havoc. And that
is not a threat.  I am sending a copy of this email to Dan Smith to back
myself up so I cannot be held hostage by your fantasies because for
whatever reason, you can't stand me.

So don't think your little fantasy of my sending "hostile" emails is
going to be tolerated. I have saved all my emails to you and will send
them to the website folks at NDRF if you try to pull this stunt there.

It will not be tolerated. Read the FORUM ETIQUETTE at NDRF.

I am simply trying to keep peace on the boards. The nicer the
atmosphere, the better for And maybe, they might get some

I apologized to you tonight in good faith and I meant everyword of it. I
had no idea you have such hostility towards me. I am clueless as to why.


P.S. Don't worry, I shall not be sending you anymore emails
"threatening  or otherwise". You can make up your own stories and whine


From:    Kathy Bastasich <> Save Address - Block Sender
 To:  "Molly Brown" <> Save Address
 Subject:   Re: FWD: WHo do you think you are?
 Date:   Sat, 16 Sep 2000 17:20:53 -0400 (EDT)

Hi, Molly:

Sorry to write back on the same message we've been ending each other but I
wanted to be able to look and see what you wrote so I could answer

I did find out last night that Sophia and Linda are definitely not the same
person. Sophia is not a moderator nor connected with any of them in any way
and I guess there are quite a few moderators. She isn't a sister or cousin
or anything. I got the feeling, and it's a good one based on the 2-1/2 hr.
conversation I had with a good friend of one of the moderators (not the
Smith's but someone 'in the know') that Sophia is known to have some real
"problems" that aren't even associated with ANS problems and she does get
called on the phone every time someone complains about her, and is told to
stop what she is doing. She even e-mailed me ( Sophia did) that Linda had
called her right after she started the crap with me (I did forward every one
of he re-mails to Linda). Of course Sophia said Linda had no problem with
her but watch and see if she doesn't tone down. It happens every time she
starts crap. The next thing you know, she mentions talking with Linda and
then gets better for awhile. I actually feel somewhat sorry for her because
she never mentions friends, family, activities she enjoys. Her illness is
her identity and I feel that most of it comes from articles she reads and
things others post.

Unfortunately, I had this all typed out the computer goofed up so I lost
half of it! Will try again.

If you notice, even on the one ANS test she has had, which is tilt table and
the results of which she recently posted, the only thing it indicated was
tachycardia. And even then she posted that the interpretation stated that
the symptoms don't match the results. What does that tell you? Exaggeration
of symptoms, perhaps? And the reason she posted that scale was so that she
could put herself at the head of the class, worse than anyone else, have
other people comment, and then tell them they aren't as bad. She claimed to
be a "4" in the morning---Barb is wheelchair and bed bound. Would that not
be a 4? Sophia has  posetd in the past about being symptomatic after
carrying 3 bags of groceries up 3 flight of stairs. Well, let me tell you,
I'm not sick and if I did that, I would have a racing heart and be out of
breath, too! Who wouldn't? Doesn't mean I have ANS dysfunction, let alone
the things you guys do! But to her it's a symptom. None of the tests she has
mentioned show anything. She says she thinks she has Addison's and/or
diabetes insipidus for years. Well, if she did, none of us would have ever
heard of her because untreated, she would be dead. I would guess her "endo"
does tests to placate her. The poor guy has to realize what he's dealing
with. Her posts are SO erratic and often illegible, you can tell when she's
taking Valium or Xanax or Klonopin or the other drugs she talks about! And
it's easy to tell when she gets a call from Linda to "cut it out." I wonder
myself why they allow her to have as much power as she does. The forum is
HER podium; in fact it is her life. She never mentions friends or family or
activities she enjoys like reading, crafts, television, movies, etc. Nothing
but cats. Well, what does it take to care for a cat? They're extremely low

At any rate, she isn't worth my while and I probably should not have let
myself get as upset as I did. It was a culmination of things; having just
gotten off the phone with the Mayo doc, my sister being condescending and
unsupportive (she is a big proponent of Eastern medicine, meditation, herbs,
etc., that she swears can cure everything and wants me to give Jonathan
weird stuff when I don't know what it will do to him, then says I'm not
doing anything to help him by refusing. With family like mine, you don't
need enemies. Better that Jonathan and I are totally alone here after all.)
But Sophia did scare me with how hateful her comments were, and before the
deleted her posts, they were really more awful than anything I have ever
seen out of her. Of course the 6-7 e-mails she sent me were pretty ugly,
too. Threatening to have me banned, mentioning in one I don't think I sent
you about how she could easily find out where I am and where I live, ugly
things about Jonathan, etc.) She's very, very sick. I keep wondering if my
phone will ring and it will be her! One person I sent it to is a Lycos
administrator and he said that I could call my local police and the
administrator of my e-mail and they could actually go after her and possibly
bring charges for what she put into the e-mails. Hopefully it has now

Well, gotta go. Homecoming dance coming up pretty soon and all the gooney
kids are coming to my home before hand! I might go grocery shopping after
they leave (can't beat this exciting single life, let me tell you-hehehe!)

Have a great weekend and thanks for your support and interest. I hope this
helps answer some of your questions. Again, very sorry about what happened
to you, but you can see who we are dealing with and the mind she has. I do
know he got into alot of trouble for coming over to Fainter's United to go
after you and Monica.

Take care,


From:   Kathy Bxxxxxx <> Save Address - Block Sender
 To: Save Address
 Subject:  Sophia, what else
 Date:   Mon, 18 Sep 2000 17:14:13 -0400 (EDT)

I'm sorry but if anyone is as utterly sick to their stomach as I am about
this constant "Sophia's Forum" on NDRF, I wish they would write to Linda
about it. Teresa, you make the comment about how you feel about the SCALE,
and you get slammed. Dave posts about how part of the information is left
out (which, were it added in the first place, would have made much more
sense) and then she gets on her soapbox about everyone who has defended her
and written to her and is afraid to post for fear they will be attacked, and
on and on. Who is it that attacks everyone? It isn't me, Teresa it isn't
you, it isn't Chale or Leah, it isn't Anne or Supernurse or anyone else. It
is Sophia.

There is so much information that needs to get out there instead of having
it all squelched by someone who hasn't even had the appropriate testing and
just goes out of her way to try and prove others wrong. I don't get it. And
I can no longer support it, either. I'm glad Linda sent me her telephone
number in the e-mail because I have every intention of calling, whether it
gets me "banned," as Sophia hinted, or not.

Let me know your thoughts. I can't stomach it anymore. I made a POINT of
stating about the DOCTORS who make up the scale and here it comes again.
It's just not worth it. She has spoiled it for everyone, particularly me. I
just wanted info and to share info. But I can't do that as Sophia does not
allow it. What kind of hold does she have on NDRF?


From:    Kathy Bastasich <> Save Address - Block Sender
 To:  "Molly Brown" <> Save Address
 Subject:    Re: FWD: WHo do you think you are?
 Date:   Mon, 18 Sep 2000 20:52:10 -0400 (EDT)

Hi, Molly:

I couldn't help but laugh as I read your e-mail because I think I did a 180
degree turnaround today!! I have come to the conclusion, as well, that there
HAS to be some type of tie in between Sophia and the Smith's. You're right
in what you are saying: Too much drivel, too many hostilities initiated by
her and blamed on others. I am at an extreme disadvantage in not having been
online to see what happened when she went after you and Monica. I feel sure
I would have been banned, as well. I might as well be anyways, because I
can't post ANYTHING to help anyone or provide information or ask a question
without her going after me in one way or another, whether it's blatant or
wrapped up in HER passive-aggressive nature (the term she used to refer to
me; kind of the pot calling the kettle black). When I read how she went
after Teresa's comments today, then made sure to tell Teresa the definition
of "conniption," I about had a cow. She is one of the worst people I can
honestly say I have never met. So, my point of view, I think, was wrong. I
don't feel comfortable there anymore; I wrote to xxxxxx, I think, that a
year ago there were somewhere in the neighborhood of 100-200 people posting
fairly regularly on the forum. Well, how many are there now? Maybe 15
regulars? I do keep in touch with a fair amount of them (probably in the
neighborhood of 18 who used to post) from time to time and they occasionally
"lurk," as Sophia refers to it, just to see what she's up to. And almost
every one of them left because of her, including the actual doctor who was
posting and got nailed a few times as if HE were stupid!!

So, what are you going to do? She has her little group of 1-3 followers. It
IS Sophia's forum. It is her soapbox, her podium, and she IS in control, can
get away with anything, and does on a daily basis. I don't understand it and
never will. It's hard to believe that the Smith's put up with it but
obviously they do. What I wouldn't give to find out the real reason why.

I hope you do keep in touch. I've enjoyed your e-mails and point of view. I
wish you the best, as well.


From: Kathy Baxxxxxxx <>
Sent: September 26, 2000 5:56:21 PM GMT
Subject: FWD: I have a problem with this....

Well, it would help if I had added the post:

This is from Janet under NCS:
Has anyone heard of marijuana being used to lessen the nausea for
Dysautonomia victims?
I know it's been used for cancer patients undergoing chemo. It supposedly
helps them with the extreme nausea.

IP: Logged

Member   posted September 25, 2000 09:04 PM
I haven't heard of it for that use. Maybe one of the forum members will
experiment, and let you know how it works out.
IP: Logged


Member   posted September 25, 2000 10:26 PM
No, but I would like some access to some
If it helps with other forms of nausea, why not this kind?

When I was first ill I had access to some and it helped GREATLY with
headaches AND nausea.
But since the O.I. worsened in the last few years, don't know anybody that
smokes it and therefore do not have access.

My nausea is really bad and I would LOVE to hear other stories on this
subject, also.

[This message has been edited by Sophia3 (edited September 25, 2000).]

------Original Message------
From: Kathy Bxxxxxxx <>
Sent: September 26, 2000 4:33:13 PM GMT
Subject: I have a problem with this....

Okay, I really want to know if it's just me. Janet asks a question and look
at this answer. In one thread she's telling Mark about mixing Klonopin,
Xanax, melatonin, etc., and NOW talking about having used and wanting to
find someone with access to pot. This crap totally destroys any credibility
in this forum and it really makes me sick. Does she not realize this is
illegal? I can see Janet's question as one of curiosity but I don't really
think it's appropriate to display your DRUG ABUSE so prominently over the
internet, let alone in a forum for sick people. No matter where we live or
what we have, we aren't going to get legalized marijuana except in a few
states for confirmed cancer patients.

This is utterly ridiculous. Something really needs to be done.



From:  Kathy Bxxxxxxx <> Save Address - Block Sender
 To:   "Molly Brown" <> Save Address
 Subject:   Re: FWD: I have a problem with this....
 Date:   Thu, 28 Sep 2000 09:56:17 -0400 (EDT)

Hi, Molly:

Sorry, I didn't mean to upset you. I just thought you might be interested in
seeing the latest turn of events since you can't access the site. I agree
that living with these diseases is not a cartoon, nor a joke and am sick of
seeing all that stupid stuff myself. When I originally found the site and
began posting about two years ago, it wasn't like this. Maybe that is why I
feel determined to return it to its original state, which was pre-Sophia.
However, I don't think that will ever happen. I do know now for sure that
Sophia and Linda are not one in the same person. Sophia does live in Ohio
(just outside Cincinnati), confirmed by someone who has actually met the
creature, and Linda is in Minnesota. What the hold Sophia has on Linda is
still under 'investigation.' NDRF used to provide a valuable service but
Sophia has ruined that and it appears Linda has enabled her to do so.

Again, sorry if I upset you. Just thought you might want to be kept updated.


Kathy, I see you are playing both sides again with these posts at NDRF:

                       posted October 30, 2000 09:34 AM


                    You and I sure got nailed, didn't we? We are such BAD people for not producing
                    something we didn't have. That kind of abuse I don't need. I feel sorry for anyone who
                    is sick and DO live with illness every day, as well, through my son. So I don't think
                    that gives anyone at the other site a reason to judge me as uncaring or knowing
                    nothing about what it is like to be sick.

                    Your husband sounds right; if I'm not mistaken, to print the entire article, you need
                    permission. It's the abstracts that are available for public use.

                                                                                    IP: Logged
                       posted October 30, 2000 10:46 AM


                    I read the entire "argument" about the posting of the entire article, and though I
                    didn't want to jump in to say it (I was afraid I'd get slammed), I'm almost certain that
                    copyright laws don't allow it. If they did, the magazine would have published the
                    entire article instead of just the abstract.

                    I'm very sorry for how you were treated at the other site--you and Stacey. I wanted
                    to jump in and defend but thought that it really wouldn't do anything to help...just
                    add to the issue. I appreciate your posts and contributions to the discussions!

                                                                                    IP: Logged
                       posted October 30, 2000 11:46 AM

                    We did get slammed! Geez, after the first response in that discussion I was confused
                    because I thought I was doing a good thing. Thanks for defending me and the others.
                    I had not cheked the discussion in a few days and all of a sudden there was 38 posts.
                    I was amazed but I hope that through my effort and your effort to post the link to the
                    abstract that someone got some information.
                    On another completely different note about Jonathan have they tested the motility of
                    his intestines. 2 years ago I was 140lbs a year later I was 84 lbs. They finally found
                    my dysmotility after doing a small bowel manometry(sp? sorry)They stuck a tube
                    through my nose down into my small intestine and it came back very abnormal. I was
                    placed on TPN and gained back to 127. I have slowly trained myself to eat enough to
                    keep my weight which is 114 but it is a struggle. Lots of ensure and cereal and
                    shakes. I hope your trip goes well and they find some more answers for your son. I
                    think it is wonderful that you contribute what you know and experience for others and
                    I want to thank you for that. Sorry for this ramble but I have been meaning to say
                    this to you Kathy for awhile and haven't figured out exactly where. :0 Thank you to
                    Stacey :-)

                                                                                    IP: Logged
                       posted October 30, 2000 11:52 AM

                    Notice the 'problems' at the other site used to be here?

                    Think of the initials for that site;  The two letters can also stand for something else,
                    obviously!? LOL!

                                                                                    IP: Logged
                       posted October 30, 2000 12:17 PM


                    I didn't think it would take you very long to figure it out!! Yes, I did notice the
                    connections, as well. And to think I wasn't online at home yet that particular weekend
                    of the infamous "banning", and missed the whole thing. Darn!

                    There are alot of really nice people at that site. But name calling and the conspiracy
                    thing are WAY too much for me. If one allows their illness to consume their entire life
                    and have no other identity besides their illness, people fall away, both friends and
                    family. Of course, sometimes they do anyways when confronted with an illness, as
                    most of us are aware...

                    No matter what ever happens to Jonathan, to me, or even to any of you, I hope none
                    of us EVER becomes so terribly bitter that it destroys us totally and completely. And
                    those around us, as well. There is still an identity in helping others and CARING for
                    those besides ourselves, as well, such as we see here (even if we do get bashed for
                    it)-by that I mean elsewhere...!

                    And I do kind of like those initials!

                    [This message has been edited by Kathy (edited October 30, 2000).]

                    [This message has been edited by Kathy (edited October 30, 2000).]

                                                                                    IP: Logged
                       posted October 30, 2000 12:29 PM


                    He did have a gastric transit study in January at Mayo; they had him fast all night and
                    then gave him a very small breakfast followed by a tracer, and then x-rayed him every
                    hour for 7 hours. It did show delayed gastric transit time through the small bowel. He
                    also has steatorrhea (excess fat eliminated in the stool). Now he appears to have
                    blood in the stool, as well.

                    When he initially began losing weight, he was an athlete and ate like a PIG, but lost a
                    little over 30 lbs. on a high fat, high carb, high protein diet with a typical 4-6
                    meals/day and snacks, just eating all the time. Then he did slack off on eating and
                    they found the delay and steatorrhea. Naturally, he is no longer active since he can't
                    participate in the 3 sports nor weight training and lifting, and is wiped out after being
                    up for an hour. So, of course he would have less of an appetite, and lose more from
                    loss of body fat and muscle. However, he does eat enough to at least maintain a
                    steady body weight, not continue to lose. He has lost quite a bit in the past few
                    months (over 20 lbs. since the end of January).

                    It's certainly strange. Hey, thanks for the kind words and I'm sorry you got nailed in
                    that mess, too!! At least I wasn't alone; in fact, there was you, me, Faith, NDRF,
                    whoever the "vultures" are, and everyone in the world who doesn't publish and make
                    available for free every bit of information on ANS disorders, etc.,


                    Don't worry about not getting involved. I don't blame you one bit! It was nasty and I
                    admit it really made me upset for a few days because I think 99.9% of us have very
                    good hearts and want to try and help others. Like I said, no matter what EVER
                    happens, I will never allow myself to become that bitter, so that it really hurts other
                    people and gives me pleasure. That is sick in itself.

                    Have a great day and thanks again!

                    [This message has been edited by Kathy (edited October 30, 2000).]

                    [This message has been edited by Kathy (edited October 30, 2000).]

Well, Kathy, you said, But name calling and the conspiracy  thing are WAY too much for me.  I guess that only applies when you are in the daylight not when you can hide in emails behind the scenes!