This is topic From our fan club? NOT! in forum Medical Questions at LymeNet Flash.


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Posted by Tincup (Member # 5829) on :
 
???? Ran across this searching for some documents.

http://ld-50.blogspot.com/search?updated-min=2006-01-01T00%3A00%3A00-05%3A00&updated-max=2007-01-01T00%3A00%3A00-05%3A00&max-results=48
 
Posted by Robin123 (Member # 9197) on :
 
Wow -- this author deserves to be tarred and feathered, but first put some infected ticks on him/her...
 
Posted by Lymetoo (Member # 743) on :
 
Totally disgusting. [rant]
 
Posted by Jellybelly (Member # 7142) on :
 
I always wonder about people like this. Do they have a life? Are they so bored that they decide to zero in on certain people just for the sake of making life miserable. Sad excuse for a human being if that is all that you can find to do in life.

Where is there connection? Why do they care?
 
Posted by lymedad (Member # 8074) on :
 
I'm fascinated with this guys writings on his blog.

What are his motives?? Why go to all the trouble of posting so many articles and write with such distain for those who suffer from Lyme?

I'm going to join his blog and try to discover what he hopes to gain from this type of animosity for Lyme patients !!!!
 
Posted by meg (Member # 22) on :
 
A one track mind, that goes round and round with no place to go.....written by Hadlyme? sure
 
Posted by Tincup (Member # 5829) on :
 
May I suggest..

Don't play with this dude. NOT a good idea.

REALLY!!!

I'm serious.

Did you hear me?

OK!

[Big Grin]
 
Posted by Katcon (Member # 9812) on :
 
Give him a day in my life, and we will see who has Lyme disease.

What a jerk!
 
Posted by Tincup (Member # 5829) on :
 
Sound familiar?

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=051040

????
 
Posted by Tincup (Member # 5829) on :
 
Now you see some of the stuff we are up against..

sooooooooooooooooooooooooo

Let's get to work and clean up this GARBAGE!!!!

Kids don't stand a chance as long as this goes on!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

ONLY 4 minutes of your time today to drop a CT newspaper a note? Here are the simple steps to follow...

```````````````````````````````````````````

To find newspapers in CT... pick one you like the name of... maybe Hartford.. New Haven.. I even did Yale... your choice.

http://www.50states.com/news/conn.htm

Then- Copy and paste this note below to their contact email.. or feel free to write your own.

```````````````````````````````````````````````

Are you covering the Dr. Jones medical board hearing?

Thursday, January 18th, 9:00 a.m. at the Dept. of Public Health Complex, 410 Capitol Avenue, Hartford, CT, Conference Room C in Building 470.

Information on hearings found here-

http://www.lymesite.com:80/Dr_Jones_hearing_dates_directions.htm

Thank you!

```````````````````````````````````````````````````````````````````````

You are DONE! Good job!!! Unless of course you want to pass this along on an email on to all the folks you know!

[Big Grin]
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by Tincup:
Sound familiar?

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=051040

????

that was MY first thought....It's gotta be him. He can't spell either....sounds just like him.
 
Posted by meg (Member # 22) on :
 
Lymedad,

Tincup is right on with this. Please don't fool with this in any way....sometimes what you see is a game or ploy.

These people are not mentally right and are dangerous, maybe "rabid" would say it all.
 
Posted by kelmo (Member # 8797) on :
 
I'm dumbfounded. What's the purpose of this, and who is going to read it?
 
Posted by northstar (Member # 7911) on :
 
First, I would clean computer cookies, if you have looked at this site.

Second, it is a poor website; graphics, scrolling, etc. are
so bad, it is not worth trying to read.

Third, gee, I have seen all this stuff before, and this blog confirms others' suggestions.

Fourth, the writer has a twisted mission. Not intent on presenting data, but intent on libel, slander, innuendo, etc. More brain messin' purpose, a bait, a taunt, name calling, suggestive of inability to look at the science.

Reminds me of folks who lack cognitive, vocabulary and verbal abilities, to express, and have to resort to swearing, etc.

It is a reminder to all of us to know we support ILADS for scientific reasons and the human consequences of ignorance, and not emotionalism.

Fifth, perhaps some brave soul who can read that site, might pull out the studies, and know that this is what they think is their "ammo". Easily shot down with data.

Gads, to work that long on that blog, and to produce such an illegible, incoherent, patently school yard taunting opus ........amazing.

Northstar

Edit: p.s. I also was compelled to wash my computer screen, keyboard, desk, and spray lavendar essence in the vicinity.
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by northstar:
Reminds me of folks who lack cognitive, vocabulary and verbal abilities, to express, and have to resort to swearing, etc.

It is a reminder to all of us to know we support ILADS for scientific reasons and the human consequences of ignorance, and not emotionalism.

-----------------------------------------
Gads, to work that long on that blog, and to produce such an illegible, incoherent, patently school yard taunting opus ........amazing.


[Big Grin] [lol] [Big Grin]
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by kelmo:
I'm dumbfounded. What's the purpose of this, and who is going to read it?

Others just like himself. Idiots all.
 
Posted by griff (Member # 10253) on :
 
I have a good idea who it is and he posts on the sci.med newsgroup.

It's the same garabge he posted before on there.
 
Posted by Kendrick (Member # 10990) on :
 
I've learned earlier in life, when working 50 hours a week, working out, and going to college at the same time for 7 years, which was prior to having Lyme, that it's useless to argue with someone who is ignorant on an issue, yet opinionated.

If this guy is the guy from Quackwatch, he's fanatical.
 
Posted by bettyg (Member # 6147) on :
 
tincup/others who get regular email from me, here's what i attempted to send, that showed up as NOTHING on your email; don't know why as it was there earlier!! [confused]


tincup/lymenet members,


i skimmed briefly what tincup just sent me! this person has a passion on us chronic lymies!

if you skim thru the entire contents running down the middle, you will discover these things:


they quote tincup's lymenet summary of no. of drs. seen, $$, how long we've had lyme;

many newspaper articles published;

anything from pat smith;

history of ALL LYME PROTESTS/GATHERINGS/HEARINGS;


discusses at the very bottom about UNDER OUR SKIN LYME DOCUMENTARY being made how THIS UNNAMED BLOGGER was asked time and again by PRODUCERS to be in their documentary, but he declined !

check it out a little i read articles i'd not seen; they've spent hours amazing this amount of info. [cussing]

also, i just sent you all earlier something about lyme, to use for insurance purposes! Neurological Complications Of Lyme Disease link/insurance purposes!

EVEN THAT HAD INFO IN THERE and his comments on that!!!
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by bettyg:

discusses at the very bottom about UNDER OUR SKIN LYME DOCUMENTARY being made how THIS UNNAMED BLOGGER was asked time and again by PRODUCERS to be in their documentary, but he declined !


 -
He's so full of it!!! [lol]
 
Posted by griff (Member # 10253) on :
 
I just read on the blog articles about Kathleen Dickson and him being harassed in the sci.med newsgroup, now I am sure its McSweegan (chuck).

It's a clear response to Kathleen's "actionlyme.org" website.

Ed was Busted and sued before years ago using a fake name to harass Karen at the LDF at sci.med and looks like he thinks he can try it again with a blog.
 
Posted by shazdancer (Member # 1436) on :
 
From his profile...

Occupation: Microbiologist

Yes, all the signs point to McNutcase. His is a toxic, antisocial personality, judging by his posts and proclamations. Steer clear.
 
Posted by Michelle M (Member # 7200) on :
 
Pathetic.

Notice he has no "comments."

It's too pathetic for anyone to bother reading.

Actually, a nutcase like this is great to have in the Steere camp. Gives em a lot of credibility. Uh, yeah. That's it. I bet THEY'RE even embarrassed by him.

Michelle
 
Posted by lymedad (Member # 8074) on :
 
quote:
May I suggest..

Don't play with this dude. NOT a good idea.

REALLY!!!

I'm serious.

Did you hear me?

Loud and clear !!
 
Posted by griff (Member # 10253) on :
 
Edward McSweegan's story he published, thought some might want to read how insane this man is. He writes books in his "free time".


Obsession
By Edward McSweegan
Honorable Mention


"Are you back online with those crazies?"


"They're not crazy. And neither am I."


"Well, you're making me crazy. And the kids."


I listened to his angry exhale. I could feel his eyes on the back of my
neck as I stared at the computer screen. My skin is super-sensitive
since the disease started.


He said, "The kids are in bed, in case you manage to drag yourself away
from that online loony bin."


I listened to his feet stomp into our bedroom.


The kids are fine. He's fine too. But I'm not. Doesn't he understand
that? It hurts just to sit here and type out my messages to the group.
I don't know what I'll do if I can't type anymore. Who will I talk to
about this endless nightmare?


I shouldn't say that. Frank was a good husband. He went with me to the
doctors. I had all the symptoms. I still do. There's fever, sweats,
chills, sore throat, upset stomach, shortness of breath, joint pain,
headaches, eye floaters, confusion, forgetfulness..., confusion,
irritability--that's mostly Frank's fault--tremors and exhaustion. I
think there are more. They come and go.


The first doctor I saw didn't have a clue. He poked and prodded and
asked about the flu.


"It's June. Who gets the flu in June?" I asked.


"It happens," he said from behind the barricade of his desk.


I tried most of the doctors in town. None of them knew what they were
doing. None of them made a diagnosis I could accept.


***


On grocery day, I was still wondering why I felt so bad when I
overheard two women talking about Lyme disease and the ticks the older
woman said she kept finding in her yard. I backed out of line with my
cart.


"Excuse me," I said. "What were you saying about those ticks?"


"Oh, it's dreadful, dear. Nasty, blood-sucking creatures. Then you get
all those horrible complications that never go away. The doctors never
manage to diagnose it," she said. "It's a nightmare."


I was so excited. I grabbed her arm as if she might suddenly disappear.
"Yes, I think I have that." I told her about all my symptoms and the
doctors' silly ideas about flu and aging.


"My dear, they have no idea." She waved a dismissive hand. "You need
an expert."


"And you need the right information to make sure they give you the
right antibiotics," said the other woman.


"Where can I...?"


"The Internet. There is a whole community of wonderful patients who can
help you get the right treatments for this awful thing."


She scribbled some Web addresses on the corner of her grocery list,
tore off the paper and handed it to me. "You check here before you
waste more time with those HMO docs. We have to help ourselves, dear.
Keep in touch."


Well, she was right. I found everything on the Internet. Some victims
had posted their symptoms, a do-it-yourself diagnostic survey, and
heart-breaking stories about ruined health and indifferent doctors. Now
I didn't feel so alone.


***


Frank took me to another doctor and I got the Lyme blood tests. All the
tests came back negative, but I knew they would. The Internet sites
said the tests were inaccurate so you had to rely on how you felt.


The doctor shook his head and said I was wrong. "Online chat rooms
and newsgroups are not reliable medical sources. You shouldn't listen
to faceless strangers just because they're agreeable and accessible
through a computer."


I saw Frank nodding in agreement. I think that was when he decided I
was obsessed. That was so unfair of him. All I wanted was to feel
better again.


Driving home, he said, "Honey, none of the doctors can find any
evidence that this is Lyme. They did the blood work. I think we need to
re-focus and ask what else it could be."


"No. The tests are unreliable. The Internet says you can be
seronegative."


"Then why'd you take 'em in the first place?" He raked his
fingers through his "Look, a pregnancy test isn't always reliable
either. But you take five of them and if they're all negative it's safe
to say you're not pregnant. Right?"


He had that nodding, eager look on his face. I could see he was hoping
I would just agree. But I couldn't. Other people failed the tests and
still had Lyme. I knew I did too. "I'm not pregnant," I said. We drove
home in silence.


***


The doctor refused to write me a script for antibiotics. I'd already
used all the antibiotics I got from the all the others. It's so
outrageous having to beg for the medicine you need to get well. Lucky
for me, someone in Lyme Chat said you could buy antibiotics online.
They were for aquarium fish, but so what. I bought three hundred
dollars worth before Frank saw the credit card bills and went
ballistic.


A week later, Frank suggested we see a specialist at the university
hospital.


Well, he seemed nice enough. He read through my charts and asked me
about my lab work. I didn't tell him about the aquarium antibiotics.


He made a temple of his fingers and said, "You know, these ticks are
clever little vampires. They have tiny saw-toothed heads to cut through
your skin and burrow in." He jabbed two fingers onto the desktop. "Then
they secrete a cement that holds them in place. That's why they're so
hard to pull out. Now once they get themselves anchored they release
various chemicals to dampen your immune system and keep your blood from
coagulating."


I felt faint.


"And the bacteria they sometimes carry, they're sort of shaped like
microscopic worms or snakes. A lot of people imagine these things
wiggling through their skin and corkscrewing into their nerves and
joints."


I scratched at a sudden itch on my arm.


"These can be very powerful and disturbing images for many people.
Sometimes they can be overwhelming, even when there is no tick. No
parasite. No bacteria."


"What?" I asked. "You mean, not real?"


He drummed his fingers on his desk. "It's a condition called
'delusional parasitosis'. Lyme disease fits this paradigm for a lot of
people: some of whom are often so desperate for a physical explanation
to an illness when, in fact, it may be more appropriate to explore an
emotional or psychiatric...."


I was out of my chair and out the door before he finished telling me I
was nuts. In the car, I screamed at Frank for tricking me. "I'm not
crazy."


"Look, you need help," he pleaded. "You need to get well. Who cares
how that happens as long as it happens? Those hypochondriacs on the
Internet are just re-enforcing your belief in something no one else can
see."


"Then I'll have to show you," I said.


***


On Saturday, I got myself out of the house and drove over to the kids'
school. Where the playground backed up to the woods, I unfolded one of
our queen-size white sheets and dragged it over the uncut grass. I saw
a tick expert do this on the Discovery Channel. Then I turned the sheet
over.


"There they are." I started laughing. Reluctantly, I knelt down and
counted the tiny black dots clinging to my sheet. I used a stiff blade
of grass to flick the little monsters into an old baby food jar. I
jammed the lid and hurried home.


I showered and shampooed. Then I went into our backyard with a fresh
white sheet; I had to throw the first one away. How could I ever sleep
on it again? I dragged the sheet around the yard until I found a tick.
Thank God we didn't have as many as the school. I showered again,
threw away the other contaminated sheet, and waited for Frank to come
home.


When he came in I waved the jar in his face and said, "Here's your
proof. We're infested."


He took the jar and peered at it. "What's this?"


"Ticks. Nymphal ticks. The kind that infect you. They're loaded with
Lyme bacteria and God knows what else."


He rolled his eyes. "Oh, please. I'll spray some pesticide if you're
afraid of the backyard. Is there any dinner or do we have to eat
ticks?"


I stormed upstairs and got back online to tell my fellow victims about
the ticks I found.


Later, Frank came upstairs to nag me about my Internet sessions, but I
ignored him. After he went to bed I found my jar of ticks in the
kitchen and brought it upstairs.


The boys were asleep. I straightened out their sheets and blankets. I
know I haven't been the best mother to them lately. But I'm so
tired from having to fight this disease alone. I need help.


I unscrewed the jar's lid and sprinkled the ticks into their hair.


Someone has to listen to me.
 
Posted by meg (Member # 22) on :
 
How disgusting and insulting.... [cussing]
 
Posted by Kendrick (Member # 10990) on :
 
It appears as though he may be dissociative(in some form), with abrasive tendencies, based on his writings.

Sometimes diabetes, PTSD, and other things, cause this behavior.

I wish that he may find happiness, in order for us(those) who are trying to fight to survive Lyme as opposed to laying down and accepting defeat(because of doctors who don't want to actually treat Lyme), to be allowed to do so without ridicule. I wish that he may find his POSITIVE purpose in life.

Man, these abx are starting to clear my head more and more. I can think again!(at least a short period of the day).

And you're right, stay away from him. That story was pretty scary.
 
Posted by Beverly (Member # 1271) on :
 
Emailed CT newspapers, I hope it helps.
 
Posted by Lymetoo (Member # 743) on :
 
That was CRAZY!!!
 
Posted by Anneke (Member # 7939) on :
 
I am so curious on a human level what would motivate this guy to devote his time and energies to attack patients with a chronic illness???? It is sooooo odd! I think a prior poster is right... There's a DSM diagnosis in there somewhere.

It's interesting that he turned down an interview with the documentary crew- if that indeed is true.
 


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