Topic: Fraudulent Page Defaming Me With Post NOT Mine
CaliforniaLyme
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Member # 7136
posted
For the first time I became aware of a page that not only disses all Lymies but singles me out and then does worse. On the old sci.med there was ANOTHER Sarah, her posting name was simply, Sarah. She was Sarah Ellen if I remember right. She was not I. I was, at the time, account Sarah_Weiss and email [email protected]. You can see her email, check it, it is NOT ME. I did write the suggestion as follows re getting antibiotics from teh feed store but then the malicious author of this page links to an old post of Sarahs and mixes us up. ANYONE who knows me would know this is not me for several reasons-
A. I didn't have bipolar diagnosis
B. I didn't attempt suicide and end up in a psyche ward
C. I was raised in a different STATE with a different life entirely and
D. my father was deceased by the time I got a drivers license
E. I was never in Fallons study, never broke my leg, never WROTE THAT!! AGH!!!
But this page is a MALICIOUS attempt to defame me and I have to say, I am shaking and upset. I don't know how long it has been up. I am consulting a lawyer- my brother and sister-in-law, Uncle and Aunt are all lawyers- and am very deeply offended by this. This site is horrible, horrible and this write-up is a clear intent to defame me- using a mental health history that is NOT MINE.
Sincerely, Sarah who has NEVER BROKEN HER LEG, who was raised all over the place but never New York, whose father was very dead by the time I had a car, who NEVER attempted suicide to be placed in a psyche hospital and who WAS evaluated by a psychiatrist when I didn't get 100% in 30 days of abx and who was found to be mentally NORMAL
And then there's some barnyard advice from another long-time Lyme nut:
It is what I would do if I didn't have a doctor! * feed stores- tell them you have a goat that weighs as much as you do!!! * animal abx from online
I wonder what kind of doctor this poor wrecked creature has these days? Some quack LLMD or perhaps a New Age California guru? From her own tedious online confessions one learns that she attempted suicide several years ago after her parents threatened to take away her car and access to the Internet. (``When I was in the hospital after the suicide attempt I was in the psych ward. [F]or any who don't know, it is a locked wing of the hospital....'' Thanks. We might have guessed as much.) Despite--as she claims--watching her parents reduced to tears over her and having doctors tell her to her face that she was nuts, she seems to have abandoned a credible diagnosis of bipolar disorder in favor of a self-diagnosis of a permanent tick-borne infection, and abandoned useful neuropsychiatric medications for all the antibiotics she can get her hands on. Probably that includes goat antibiotics.
By herself, this person would be just one more tragic tale of one more misguided fool avoiding reality and a chance at a relatively normal and healthy life. But the greater tragedy is her relentless presence on the Internet, giving unsought advice to equally confused and ignorant people; and providing blithe, pseudo-intellectual interpretations of medical and scientific findings, of which she has absolutely no understanding. The depth of her ignorance and the scope of her mindless commentary are breathtaking. If only her parents had managed to cut off her access to the Internet!
UNQUOTE- and the words in the above- "suicide attempt" are linked to THIS post which was by the OTHER Sarah NOT ME!!! If it was ME there would have been *)!!!!!!!!!!!!!!! I have always written that way-*!*)!*)!!!!!!!!!!!!!!!!!!!!!!!!
She just uses a ~Sarah and at the time I ALWAYS signed off Sarah*) If you know me, read this, this is NOT my life.
AGH!!!!!!!!AS FOLLOWS- the other Sarah (who was really nice but it's HER life NOT MINE!!! I HAVE MY OWN LIFE!)
Message from discussion Kids LD & brains (looong), Qs for Sarah, was Re: one more story
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Sarah View profile More options Oct 19 1999, 11:00 pm
Newsgroups: sci.med.diseases.lyme From: "Sarah" Date: 1999/10/20 Subject: Re: Kids LD & brains (looong), Qs for Sarah, was Re: one more story Reply to author | Forward | Print | View thread | Show original | Remove | Report this message | Find messages by this author
ok first off here I'd just like to start by saying that getting my story out like this does make me happy. Why? you may ask? Well there is a singer/songwriter that has impacted my life very much. Her name is Ani Difranco. One of her lyrics that sticks out to me here that puts the perfect words to what I am trying to say is; "I hope somewhere some woman hears my music and it helps her through her day.." Now put lymie in there instead of woman and maybe you can understand why I am sharing so much of my story.
ok now on to the answers lol. I was actually a part of one of Dr. Fallon's studies, he is a brilliant man! (I can find out the exact name of the one I was a part of if you'd like) I think my family has a lot to do with why I am so strong and well grounded so far. They really have been some of the only ones fighting for me here so I do have to give them a lot of credit. I do have my moments of insanity, as every true lymie does. There are days I cry for hours wondering why I am fighting so hard for something no one can prove to me will ever end. I cry about that a lot. I sit and cry about how emotionally detached from the world I find myself getting.
------- You thank your psychologist for keeping you sane. What does he do that helps you? How is he different from the psychs that DIDN'T help you? I think the main thing he does is admits he doesn't know everything, to me that's key to any doctor I'm with though. I had been to a few before him and one thing I've noticed about myself that I've kinda analyzed myself(though could just all be my views here) is that as a lymie I'm as bad at manipulating people as addicts are. It's sad in many ways I guess, but helped me weed out psychs lol. I've noticed most try to make you feel smaller, or worse than them for even being there. That's not what's going to help a young person with lyme. Especially ones that have gone misdx'ed for so long. I think that's what made me into such a good manipulator.(it's a harsh word but I can't think of a better one) I learned at a young age that the only way to get through life is to be just like everyone else, the more you say you are sick the more they don't believe you.. the sicker you look the more questions people ask. I don't know about any of you as lymies but I just have an urge to slap people who ask how I'm feeling.. or that say "oh you look so much better" .. I know these people don't mean anything by it and don't know any better.. but I still get frustrated. So I've learned how to not look sick and to keep my complaining(to people outside my family) to a bare minimum. What else helps me? well the music I listen to plays a big role of keeping me sane, as does the internet. I have been on the internet as long as I've known I had lyme.. for a while they tried to say I had an internet addiction and it was harmful to my health.. blah blah blah. The don't understand what this does for me. This lets me get out how I feel and not have people laugh. this lets me think out what I want to say so I can get it right. Now more than ever this is the one of the only ways I get to keep in contact with all my friends.. with all the ones that have gone off to college.. even the friends down the street. Art is another thing that helps me. Art is so important to kids.. it lets them express how they feel even when they can't put words to it.. I could go on for hours about this but this is already long enough lol. As for the abx, you will hear a very biased side of the argument from me.. I can only tell MY experiences though. So far every medication I have ever been on has just made me worse in the long run. They've tried pretty much everything. Here I'll try to list as much as I can remember: doxy, IV primaxin, IV rocephin, IV claforan, zithromax, ceftin, amoxacillin, mepron, relafen, percoset, vicodin, zoloft, effexor, nortriptyline, ambien, adderol, antivert, zofran... and more I just can't think of right now. half of those are meds for reactions I had to meds.. it's all just craziness, there have been SO many times I have just wanted to give up, and have. I still try new things though. Next on the list is Merrem. If you want to know about all the medical stuff.. I am known and feared by the medical world for my odd reactions to everything lol. Primaxin worked in the sense that I got o violent herx once, but thanks to the lovely insurance companies we never really knew what would have happened if I stayed on it much longer. How do I help myself? Art. I guess that's how I could sum it up in one word. From listening to music, painting, watching movies, writing, drawing, cooking.. you name it.. anything I can express myself with non-verbally I do. This is also how I think we can help more kids with lyme. When I was in the hospital after the suicide attempt I was in the psych ward.. for any who don't know, it is a locked wing of the hospital where you have a dorm type room you share and are put through all different forms of therapy all day. I was reluctant to it all at first for obvious reasons.. but I slowly got into it.. group therapy and art therapy are what worked wonders on me. The group therapy was nice because it wasn't just lyme patients. While it's nice to talk to people who know the pain.. but it's also important to see how people cope with life in general.
Was it that you couldn't find the word you wanted, or did you get the words in the wrong order, or use wrong words or what? Is there an all of the above here? lol it was a kind of process, I would know exactly what I wanted to say, I'd have the perfect words in my head.. then when it came time for me to speak I would forget the words, then the ones I would use I would jumble and I would put them in the wrong order. Now I find myself using the wrong word a lot.. not on purpose but I think the word and say something different.. it's an odd feeling.
were there any kinds of tests, any particular subjects or school-related tasks, that were harder for you than others -- especially early on? If so, did the pattern change over time? I have had extensive neuropsych testing done by a local (and brilliant) neuropsycholgist here. She found I have cognitive impairments. Mainly with memory and recall.. stuff like that (if you want me to get more into detail just let me know I can find the report and e-mail you with what she exactly found) As for what I saw as impairments when it came to neuro stuff looking back at my life with lyme? I remember studying as hard as I could for things then drawing blanks when it came time to answer anything. I don't know if it was this or the lyme.. or a combination of that cause it but over the years my motivation has dropped out of sight. I don't have any anymore. Lately I've just been too sick to do anything.. but even when I'm better.. and all through elementary school I just didn't want to do anything (I think I've seen it posted on here as "can't do anythingitus" lol) The lack of motivation is the only thing that has stayed pretty much constant.
My Lyme brain really gets in my way, but, being as I'm on the verge of old, I'm always aware how many years I've had to enjoy having it work just fine. This whole paragraph here of yours has struck something in me. I love to learn. I always have. I have always loved the start of school.. the thought of learning so much just amazes me! I always wonder what I'm going to be when I get older.. what will be my niche? I wish I could stay in a class long enough to find out what I even like to do. It's scaring me now that I'm getting older and I don't see an end here. I love psychology .. but I wonder how I've learned so much about it, I haven't even made it through a semester of classes. If I'm just loving it because I have been through so much I wonder where I'd be if I'd never gotten sick. I am not a religious person if anything I consider myself Taoist because those are the only set of beliefs I've seen where so many match mine (i.e. in order to be truly happy you must have felt true sadness, in order to be well you must be sick, etc.) All throughout this I have thought I was the most sane person in the world.. that I'm just misunderstood. Actually as weird as it may sound I have always thought of everyone else to be less sane than me.. odd I know.. I don't think I can even explain that one. A psychiatrist once told me he thinks lyme makes people developmentally younger than they are. This upset me to no end. Still does irk me a bit... I guess now in retrospect I can see where he was coming from, but in my eyes I think this disease has made me grow up so much faster. Between feeling the actual pain, seeing how the corporate insurance companies just work to screw us over, watching my parents be reduced to tears over me,(and still stayed together through it all) Having doctors tell me to my face I'm nuts.. with everything I feel so much older. I even find myself not able to talk to people my age as well as I can to people much older. This disease gives you quite a good BS detector. I am interested in everything.. I used to LOVE science.. I loved taking things apart, but now not being able to remember how to put them back together poses a bit of a problem lol. I also loved to read as a child.. I still do, but it takes me forever to finish a book now. I don't have and concentration anymore, again maybe it's the lyme, maybe it's being a teenager... but nothing seems to hold my interest anymore.(you'd never guess by the length of this response eh? lol) The one thing that I haven't lost is my curiosity. I still want to know everything!! (if you have a teenager you'll know getting us to admit we don't already know everything is a feat in itself lol)
You mention loving drama. Why? What did you love about it? Simply because I was able to be someone else. No one looked at me as the little sick girl. I was the character. Suprisingly I didn't have much trouble learning lines... getting into character was easy for me, the lines just flowed. I wanted to be an actress for a really long time actually. Another Ani Difranco quote snapped me out of that though.. "everyone is an actor or an actor's best friend. Tell me when it got so bad that we all have to pretend." It just rings so true. What else do I love to do? Again, any type of art. I love to watch movies, new and old.. especially independent movies. I love learning about other people. I love seeing how other people think, how they react.. why they are who they are. If I ever had a wish it would be to walk a day in someone else's shoes.. to see life through their eyes. That's where the independent movies come in... they have the least room between the writers/filmmakers head and what the audience sees.. I love that. I don't know how that relates to lyme. but who knows.
I was afraid I wouldn't be "me" anymore. did you ever feel that way, Sarah? Was there a moment when you just *knew* something was wrong with your brain? Honestly, I don't really see anything "wrong" with my brain. This is me, I have been this way for most of what I can remember. I know I have brain damage, I know I have things physically wrong with me. I just think this is me, it wouldn't be me without all of it. I can't do anything to change it. I also don't think I'd like myself any other way. Whenever I tell people I have brain damage they let out a gasp or tell me how sorry they are for me. I just look in their eyes and wonder if I hadn't told them if they would have noticed anything at all. Even if they knew me my whole life. As for a moment when I knew.. I don't think so like I said, I've been this way for as long as I really remember I don't know how to do anything differently.
I got the impression from your story that your brain stuff was almost too subtle to notice until you got mono. Is that true? Do you know what tests it was that were positive, how they were sure it was mono? I guess I didn't make it too clear here, I'm sorry for that. When they tested me for lyme they also tested me for EB(mono). The tests showed that I had already had mono(around December of 96 we think) and that my lyme titers were positive. We didn't know I had brain damage until I had my first Brain spect scan and saw Dr. Fallon for that study. I probably wouldn't know I have brain damage without people telling me, for the sheer fact (as I said above) that I don't really remember life without the brain damage. Though sadly the tests do show the legions on my brain and the constricted blood flow to my brain are getting worse. One thing I found interesting when I saw a cardiologist for the first time today(this is a lil off-topic here, sorry) was that he said my brain damage could be causing me to have low blood pressure at certain times of the day(something about it effecting the part of my brain that effects the regulation of blood pressure) and that that is what could be causing my reversed sleep patterns.. will be interesting to find out if this is true. (having a tilt table test next month)
any other co-infections? Actually at different points in time I have tested for both babesia and erlichia(sp?) I took my 3 week round of mepron/zithro and it seemed to make the positive test results go away but sadly not the symptoms. Sadly the zithro caused SEVERE GI problems(as everything seems to with me, but this time it landed me in the hospital) Other than all known strains of lyme this seems to be it so far. We're not sure, nor have we ever looked into, if I ever really had mono.. or if lyme makes it positive.. who knows?! lol
He's also said (in an LDF talk, I think) that LOTS of kids with Lyme encephalopathy (was it half?) admit to suicidal thoughts, with some horrifying percentage actually giving it a try. I never knew he said all of this! It's odd, yet weirdly reassuring, that I was right about the impulsivity. I had never admitted to suicidal thoughts.. never even to myself.. I was always the biggest anti-suicide person you could find. They are right for me about saying the one's who talk about it are USUALLY not the ones to do it. No one expected this from me, not even myself.
again, if you made it to the end of this, congrats! lol.. and Jean, please, please feel free to ask anything you'd like here or in private e-mail.. if you want anything more detailed just ask, my mom is meticulous about keeping all my records so I can look up anything you might need! ~Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. AND I DON"T LIKE ANI DIFRANCO!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
This is probably not a real person, but a troll making up the whole thing. Who do we know that writes fiction, has a lot of time on his hands, hates lymies, and has friends that are also willing to defame sick people? Maybe instead of lawyers, you might consult a computer expert who can track down the source of this posting.
Posts: 8430 | From Not available | Registered: Oct 2000
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CaliforniaLyme
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Yeah Lou, I htought that too- this is upsetting. My credibility is attacked through attacking my sanity.
You know, this sucks.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Truthfinder
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Good grief, Sarah. Don't blame you for being upset.
This is a prime example of why we shouldn't be too quick to judge someone based on what we read `about' them on the Internet.
(By the way, congrats on the end of breast-feeding - meant to tell you that when you first posted about it.)
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Vermont_Lymie
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Sarah,
So sorry to hear that you are being harrassed by a particularly nasty lunatic with a blog. Since no one with half a brain (even a lymie brain) could mistake her story for yours, it is libel.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
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Yeah, it's not a mistake.
We had different emails- here is one thread with both of us posting on it. I was Sarah Weiss back then (first husbands name).
Still sucks. Super sucks. You know, I write letters and among all the newspapers and foundations I wrote to I was writing to the bad guys too- the IDSA folks- and SOME of them were dialoguing with me for a few years until this last year & I wondered WHY they suddenly stopped writing back- I wonder if this is the why. Because some of them answered me in emails until this last year and then, NONE.
Did I mention this sucks? THIS SUCKS!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Oh, and to anyone who explores sci.med archives- it ALSO wasn't a mistake when a troll used my name and created [email protected] which has never been me and pretended to be me and posted obscene pornographic material in my name. That wasn't a mistake either. But just fyi, those postings, check the email addy, those aren't me either. THIS TRIPLE SUCKS!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
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Wow California Sarah, I seem to recall seeing some stuff on net somewhere that I thought the user name sounded like you. But I remember thinking this writing was not your lymenet style?????
Wow, I haven't read all her ramblings that you posted above. I will have to come back to that later.
I just wanted to say even though you and I see things differently sometimes....I can't image how you would feel having someone out on the net, deframing you and mocking you.
I'm sorry you have to use energy trying to clean up messes of vicious net users. Viciousness is pure evil. Good luck trying to fight a demon. I mean that sincerely.
Pam
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Vermont_Lymie
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Sarah,
Lou has a good point. Law enforcement folks have forensic techniques to trace down the computer and person making the posting, and the authority to shut it down.
It is upsetting, but realize also that the blog is so malicious and marginal that any viewers -- if there are any -- should quickly recognize it as a sham/troll.
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
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Dear Real Sarah ,
If you weren't so popular here, maybe someone wouldn't try to emulate you.
As maddening as it is, you obviously have a fan base.
I don't think anyone could emulate me or my life.
It is just too soap box like to be real.
Hang in there.
Those of us who know and love you realize a troll when we see one.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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[ 26. January 2008, 04:10 PM: Message edited by: Nori ]
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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CaliforniaLyme
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SO it's kind of a compliment. McSweegan, eh? Yup, I just checked your link- you are right!!!
McSweegan, scum of scum!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Vermont_Lymie
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Sarah -
I just checked the offending blog again; (McSweegan's it seems -- what a back-handed unwelcome attention to be targeted by that @ss!)
It seems you already won; he has already altered his libelous blog post. (Or am I looking at the wrong entry?)
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
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Did he??? Let me go check!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Keebler
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CaliforniaLyme
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HOLY HOLY MOLY_ you are right!! I had written his site immediately when I read it- threatening whatever legal remedy I could muster- and you are right- he erased it!!!
STILL a scumbag though, for posting it at all.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Vermont_Lymie
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quote:Originally posted by CaliforniaLyme: HOLY HOLY MOLY_ you are right!! I had written his site immediately when I read it- threatening whatever legal remedy I could muster- and you are right- he erased it!!!
STILL a scumbag though, for posting it at all.
Total scumbag. That kind of guy will try to get away with posting whatever fiction he thinks he can get away with -- until he is effectively challenged, as you did!
Kind of creepy to know that he monitors lymenet.... Posts: 2557 | From home | Registered: Aug 2006
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Keebler
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-
Sarah,
If this were printed in ink and you could be identified (which you can - as you run the support group you could easily be IDed) . . .
well, then this would be libel.
I don't know what the current libel/slander laws are as the internet was only a dream when I took my journalism classes.
Still, it's sad that they don't have a concept of what untreated lyme can do.
I wish we could ask all them to some workshop - and I must say I hope everyone here takes care of themselves. If something goes wrong during our treatments, it is a reflection on the whole group. Complementary treatments (in my book) are fine but do it wisely with the best guidance available.
Overall, though, I've never seen a group work so hard to take good care of themselves. As we know, though, if we eat twinkies and drink beer nothing will work and the treatment will be shelved for the next in line.
It is sad with such attacks that patients have the extraordinary burdens from that. And, in the effort to achieve respect, I would like to see the use of lyme patients or persons with lyme - rather than "lymies."
Clearly, the blog uses the term "lymees" in a demeaning way.
I wonder if the writer would have some of us over to dinner to get to know us - how else can he really know what he's writing about?
And this is a reminder to EVERYONE. We are in a public place. Anyone can overhear a conversation. We must be aware how our post would sound to ANYONE reading it, not just the few in the circle of replies.
I actually sometimes wish doctors would read some of our posts so they would better understand how the lack of proper testing and prompt medical care has left us so much on our own to figure this out.
--
If you see a post in question, copy it with the URL to your file, but also print it directly off your computer with the URL showing and the date. This could serve as a record.
CaliforniaLyme
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posted
It is deleted- the part about me citing someone else life history- is gone-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi Sarah Try not to be upset. Nobody would believe that crap anyway. We know you...and love you Monica
Posts: 422 | From CT | Registered: Oct 2007
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posted
We know Eddie stalks lyme patients. He reads this forum and has used quotes from it in letters to newspapers, which were published. The bigger question is why the NIH still has him on the payroll.
Posts: 8430 | From Not available | Registered: Oct 2000
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RoadRunner
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This is what the now deleted posting said - I still had it up on my screen. Got a printed copy to in case you want to frame it, Sarah What a truly sad and mentally sick individual that has so much hatred and spends so much time in bitterness and stalking sick people. A good psych evaluation is in order
January 23, 2008 Lymees: Hard to Kill, Harder to Comprehend Well, the online Lymees continue to bear up under the kinds of microbial assaults that quickly would kill a horse. Literally. What's remarkable about the adamant assertions below is that these people really seem to believe they have all of these concurrent infections. Clearly none of them have ever had a real infection of any kind. The Internet Lyme disease groups and websites seem to be populated largely by people who have no understanding of infectious agents, their associated symptoms, or how antibiotics work. Yet, they insist that they're infected, often with numerous agents; that th ey know more about medicine and infectious disease research than anyone else; and that if they can just swallow or inject enough antibiotics for long enough they'll be just fine again. One suspects, however, that this population of online patients was never really fine to begin with. Rejecting the reality of idiopathic pain or emotional and psychology problems, they instead have latched onto a minor infectious agent, turned it into a personal micro-demon and set off in search of an antimicrobial holy grail that will make them whole and happy again.
* I'm a life-long (nearly) Lymie. I've had it since I was three years old- over twenty years. I also tested positive twice for RMSF prior to the return of my symptoms.
* I am co-infected with Bart, possibly also still RMSF, and maybe Babs. I am IgeneX positive for an old but active Lyme infection.
* When my wife got sick in the summer of this year, she had her blood tested and it came back positive for Ehrlicia, Babesia, Bartonella, and Lyme!
* ...tested positive for babesiosis, bartonella, and lyme the one and only time I was tested for co-infections,
* I also had Lyme, bart, ehrlicia, babs, rickettsia, EBV for over a year before any treatment.
* I was diagnosed with mycoplasma, bartonella, babesiosis, ehrlichiosis as well as Lyme - in Maryland.
* i tested pos for lyme, erlich and babs...but later was pretty sure i had bart also.
* In spite of testing positive for Babs WA-1, EBV, Q Fever, H.Pylori and tapeworms, I quickly bounced back and currently am living a normal life. I'm still in treatment.
* i was dx'ed with bb, babesia microti, bartonella hensalae and mycoplasma fermentans in 2002. then i had three or four strains of candida, yipee.
* As someone who had lyme, bartonella and babesia (babesia went undiagnosed through five tests), I know exactly what it all feels like.
* It turned out to be a Mycoplasma coinfection! This also fits with the 19-21 day cycle of the supposed Herx reactions, because mycoplasma has a 21 day life cycle.
On that quest for a cure, these ``chronic'' Lymees can always depend on plenty of online drug pushers ready to offer therapeutic advice. Below is one such genius suggesting the use of aquarium antibiotics.
Maybe these are not on the list of drugs you want, but if you google "fish antibiotics" you will find doxy, tetra, amoxocillin, flagyl, and others inexpensive and without a script. They are safe and effective....
Well, maybe they'd be safe for Aquaman, but probably not for the average middle-aged woman tired of doctor-shopping and looking for a quick fix.
And then there's some barnyard advice from another long-time Lyme nut:
It is what I would do if I didn't have a doctor! * feed stores- tell them you have a goat that weighs as much as you do!!! * animal abx from online
Posted by HadLyme at 13:38
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is one of the few times I am posting without reading the information here.
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Please note-
When you go to a web site you not only give the owner the attention they are craving and then you get stressed over the hateful comments that might be posted there... but the owner also then has access to your ISP number .. which can potentially cause problems.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Thank you all you guys- today was really hard reading that and WORST, my 10 year old, almost 11, is very much a Mamas Girl, and she often comes in and sits on my lap when I am on LN and tells me what to write sometimes or has me hunt down MagicAcorn postings (who she has been disappointed not to see much lately! that is her favorite poster because of any squirrel graphic)- but she was sharing my chair (used ot sit on my lap now she slides in the chair next to me) when I discovered it and she was very upset about the things it said. So I had to talk to her about The INternet and for the first time I really think she GOT what a weird world this world can be. She has been very protected. I was glad it was retracted. Anyway, thank you all sincerely!!! Goodnight- Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Late to this thread, out all day.
Sarah, I wouldn't give it a thought.
They imitate themselves and others all the time over there.
Tincup's advice is right-on:
Don't go there.
Any normal people who accidentally find themselves over there would see quickly it's an unhealthy place.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I doubt I'd visit mc sweegan's site.
and I can't imagine anybody taking anything on that sci-med creepo site seriously.
For some reason when I first started calling it 'lymeland's dumpster' the name stuck.
For me it would be a compliment to get beat up on by those nut cases.
Don't let it get to you Sarah. JMO.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
(((((((((((((DEAREST SARAH)))))))))))))
I'm so sorry that those freaks have put you through such emotional torment.
Rest assured that you are loved by those who know you.
From what I understand of that site, they are in the habit of using cut & paste "artwork" to make serious people look foolish. They are hurtful, hateful, sad, pathetic people, who's opinions and farcical nonsense would not even be considered by those who know you.
I understand just how hurtful this must be for you, especially because you are such a gentle, sensitive soul. It hurts me to see you hurting.
I will not even waste my energy on that site, though I must say, to have attracted the ire of McSweegan, you know you're doing something good!
I would fear that he must actually have some undiagnosed neurological disease of his own & truly hope that some day he will get the help he seems to so desperately need. It's really quite sad if you think of it.
If you are being targeted by McSweegan, I think you are actually being honored for your efforts. I guess he also sees just how helpful you are!
PS- Sorry I missed this yesterday, when you were still struggling, I've apparently had my head up my butt!
[ 27. January 2008, 01:03 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
this is edward mcsweegan. ld50 is his blog.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi Sarah. Don't be too upset about it or take it personally...new research is coming out from mice and rhesus monkeys confirming the dog research, that no matter how soon the treatment with abx, the spirochetes persist, they are found in the tissue on autopsy. I doubt that research will end up on this blog but it is definitive.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Charlie and Tincup have it right Sarah. Not a one of us would believe for a minute that the other poster was you! Your history is known and also your writing style.
What it says to me, is that he's DESPERATE and losing the battle, which means of course, WE are winning!
* The Internet Lyme disease groups and websites seem to be populated largely by people who have no understanding of infectious agents, their associated symptoms, or how antibiotics work. Yet, they insist that they're infected, often with numerous agents; that th ey know more about medicine and infectious disease research than anyone else; and that if they can just swallow or inject enough antibiotics for long enough they'll be just fine again. One suspects, however, that this population of online patients was never really fine to begin with. Rejecting the reality of idiopathic pain or emotional and psychology problems, they instead have latched onto a minor infectious agent, turned it into a personal micro-demon and set off in search of an antimicrobial holy grail that will make them whole and happy again.*
quote:
WT..... ???
That is horrible!
Just a horrible troll. Sorry you had to *clear* your name! Lyme is something that the person claims to have.....but someone who is truly suffering from this debilitating disease would never make light of anyone else's suffering.
Sidenote: I also didn't appreciate the George Bush comment to the side!
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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