posted
Wow -- this author deserves to be tarred and feathered, but first put some infected ticks on him/her...
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
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?
Posts: 1251 | From california | Registered: Apr 2005
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posted
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 !!!!
Posts: 681 | From California | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm dumbfounded. What's the purpose of this, and who is going to read it?
Posts: 2903 | From AZ | Registered: Feb 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
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.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
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.
-------------------- Never walk through a cornfield backwards.
posted
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!!
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.
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!!!
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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!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
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.
Posts: 40 | From CT | Registered: Oct 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
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.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
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
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
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.
Posts: 40 | From CT | Registered: Oct 2006
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posted
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.
-------------------- Never walk through a cornfield backwards.
posted
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.
Posts: 364 | From California | Registered: Sep 2005
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