Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
So who told you Webby? Is it a local news story in DC? or national? Will I be able to see it Cali?
Posts: 1251 | From california | Registered: Apr 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I have to wait?
Please know that this is very hard for me.
I've been known to use a single edge razor blade to cut the Scotch tape on my Christmas presents so I can slide the wrapping off and peek at my present BEFORE Christmas.
And then retape it.
I am driven to know...
What IS it?!
;-)
Posts: 9439 | From Sunshine State | Registered: Mar 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Webby will we know today?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
AliG
Are you going to have your pic line put in today?
I just wanted you to know I made great progress when I did IV 3/4 years ago.
You'll be in my thoughts & prayers today ~
Healing hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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quote:Originally posted by Tincup: It is big. It will be something YOU will want to put in the news and we will want you to put in the news.. so get your paper and pencils ready.
And yes.. you might hear it on the news first.
You made my eyes water when I read this I can't wait to find out what this is all about! Thanks for giving me back some hope!
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
The release of a certain movie, perhaps?
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Just in the nick of time TC. How'd you do that?
Thanks for throwing out this lifeline.....
I'm gonna guess the Lyme Research Bill being passed.
What do we win if we're right??
Chocolate in any form would be o.k. with me!!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6525 | From Columbus, GA | Registered: Jul 2004
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posted
I think... but I don't know... perhaps it's that a certain paper is finally going to be published. I hope I'm right... but I can't eat chocolate
I'll have to settle for a lifetime's supply of healthy, organic veggies??? Doesn't seem quite the same somehow... Posts: 194 | Registered: Jul 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please, please post it here when it is announced.
I don't get local channels since Katrina.
I will probably miss it unless it is here.
I don't mind being the last to know as long as I know.
I am really wanting a quart of ice-cream from Baskin Robbins now.
Thanks you guys!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
There wasn't anything earth-shattering on the ABC affiliate. So you can forget that.
They talked about how Lyme is endemic in certain neighborhoods and how none of the local jurisdictions is doing anything about tick prevention. At least that's what I think they said!
We'll have to remain in suspense. I am clueless, but that's nothing new.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"You're a big tease, Tinny Teaserpants!"
Flattery won't get you anywhere. My lips are sealed.
And by the way.... you all are crazy! You make me laugh.
And I don't believe I started this post out for it to be 20 questions... just so ya know.
You keep chipping away at me.. and sneaking in little questions.. but I can't play that game cause I am too easy to read. I tried to sneak in the chat one night just for fun and our friend Beverly pegged me right away.
You all know me too darn well.
But I will say it isn't local news for just here... this would be more national related stuff... meaning good news for folks with Lyme everywhere.
You know you are making me feel bad not being able to say... but then I remember being the oldest of 5 kids.. and how FUN it was back then!
nah nah nah nah nah... hehehe
PS. I don't know how/where it will be announced.. but if I hear anything.. I will be here johnny-on-the-spot to share.. and you all do the same thing.
posted
*gets in line for ice cream* Posts: 526 | From NJ | Registered: May 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Marnie: I have to wait?
Please know that this is very hard for me.
I've been known to use a single edge razor blade to cut the Scotch tape on my Christmas presents so I can slide the wrapping off and peek at my present BEFORE Christmas.
And then retape it.
I am driven to know...
What IS it?!
;-)
I'm telling Santa!!!!
I have a friend that used to do that, it was so funny and she was really good at it. You might know her. Do you guys have a club?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Ok, Tinny Teaserpants, hahahah, I missed that first read. (Funny Ali!)
Ok, so we know this much... It will be something national and involves either water, chocolate, ice cream or maybe even Lyme disease.
Am I close?
*goes scavenging for chocolate because the stress is too much* (hey, any excuse works for me)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i think when we hear the good news.whatever it is, that the Queen of Chocolate, Cave 76 (or is it 67?) should shower us all with gobs of Godiva.
just a thought.
dilly (wickedly full AGAIN of local chocolate coconut almond ice cream) Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I just got here, and the anticipation is killing me...or is that just the lyme? From which source might we expect to hear such news...Fox News? Heh. New England Journal of Medicine? HehHEh.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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bettyg
Unregistered
posted
is this what she is referring to that she sent me a litle whiile ago?
AfterTheBite wrote:Mon, 8 Oct 2007 23:24
PRESS RELEASE
Centreville, MD October 9, 2007 --
Members of the Lyme Disease Education and Support Groups of Maryland have joined national and International organizations in voicing concern over a recently published article in the NEJM, "A Critical Appraisal of Chronic Lyme Disease".
The article claims chronic Lyme disease is now a ``misnomer'' and antibiotics are not required to treat this complex infectious disease. They state the physician's role in dealing with patients who remain sick when the author's ``cost-effective'' treatment plan fails should be restricted to only providing ``emotional support and management of pain, fatigue, or other symptoms''.
Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland strongly disagrees. ``Chronic Lyme disease has been described in detail in the medical literature by some of these same authors and many others for the past 27 years.
To suddenly say after 800 scientific articles have been published that chronic Lyme is simply now a ``misnomer'' and in turn eliminate all access to antibiotic treatment for patients whose doctors have prescribed it, jeopardizes the lives of all our residents.
Furthermore, their claims cannot be substantiated by the bulk of unbiased scientific medical literature or by chronically ill patient's clinical outcomes.''
In Maryland, more than 2/3 of the $430 million spent annually on Lyme related costs are attributed to those who are chronically ill and require treatment past the 2-4 weeks currently prescribed.
In fact, up to 60% of Lyme patients have been shown to relapse months to years later when using the short term treatment protocol recommended by these same individuals.
The author's rationale for promoting their new ``no-chronic-Lyme'' theory has not been officially determined; however, patients are concerned about motives since a number of the authors are facing possible charges stemming from the Attorney General's investigation into antitrust, exclusionary conduct and illegal monopolization practices directly related to some of the authors own Lyme disease treatment guidelines (Infectious Disease Society of America).
In addition, several of the NEJM article's creators hoping to wipe out chronic Lyme with a stroke on the keyboard and one journal article (Feder, Johnson, O'Connell, Shapiro, Steere, Wormser) have admitted conflicts of interest by having ties to the insurance industry and patents on Lyme products.
They also accepted Lyme related research grants and/or own equity in or have received funding from pharmaceutical companies.
Some have been paid to testify in civil, criminal and medical malpractice cases involving Lyme disease patients and have reviewed Lyme disability claims for insurance companies.
Three of the Ad-Hoc Group authors are reported to be from Johns Hopkins Medical Institution in Maryland.
One proponent of the no-chronic-Lyme theory, E. McSweegan, was demoted from his position as head of the NIH Lyme disease program after an incident involving the harassment of Lyme support group members.
Two other employees from Hopkins (P. Auwaerter, JS Dumler) are listed as authors or editors on the controversial Infectious Disease Society of America's Lyme disease treatment guidelines which are currently under investigation by government officials for possible illegal practices. *************************
``Unfortunately, there have been major problems [other than the ticks] facing people with Lyme disease over the years,'' Barnes admitted.
``First of all, some of these authors claimed Lyme was a virus and needed no treatment. They also said only deer ticks that were attached for 48 hours could transmit Lyme and nearly everyone with Lyme had a bulls-eye rash. None of that was true.
Many doctors and patients were misled for years by erroneous information and many patients suffered serious consequences from their unsubstantiated theories.
In addition, the Lyme tests the authors recommend and which Maryland residents pay over 2 million dollars per year for, according to the authors own research and other studies, still miss 75-90% of the people who have Lyme disease.
I know of no other medical condition for which these set of circumstances and these inadequate diagnostic tests would be acceptable or tolerated. I can't believe these tests are still on the market and still being promoted by these authors."
"The continued use of their unreliable tests negatively affects studies they have conducted and their conclusions.
Their failed vaccine, based on these same types of questionable studies and lab tests, was pulled from the market after 1,000 adverse event reports were filed with the FDA and now their diagnostic and treatment guidelines are under investigation by the government for illegal practices.
With all of the author's incorrect theories floating around unchecked and their unwillingness to incorporate scientific or medical viewpoints other than their own into their recommendations, patients are the ones paying the ultimate price."
Barnes cautions, "At this point I would have to warn people with Lyme to consider credibility and motives when deciding if chronic Lyme disease exists and if it requires more treatment than a pat on the head and a lecture trying to convince people they aren't really sick.
Or better yet, take a look around at the increasing number of people who are chronically ill or disabled from Lyme, as well as those who have died from tick borne diseases after being treated with their protocols. That should tell the whole story.''
Contact person: Lucy Barnes, Director Lyme Disease Education and Support Groups of Maryland [email protected]
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
ahhhhhhhhhhhhhh.. Bad bad BettyG.
Now you KNOW you can't keep a secret.. so I wouldn't tell you the secret!!! If I HAD told you... you'd have blown it for sure!!! HA!
By the way...
No.. that isn't it.. but nice try.
MUCH bigger news than my stuff!
By the way.. I've been all night sending that press release to all the different state legislators. Wanted to say again the list over in Activism is SO helpful!
THANKS to all who contributed to it.
It helps me get the word out!
Ok.. you know the rules.. go to bed early so morning will come sooner.
That is always the SORRY line they would use on ME on Christmas Eve. It took till I was 35 before I figured out that wasn't true!
posted
Wonderful press release, TC, it carefully raises all the issues with the IDSA guys.
Including the failed vaccine, which I think is a key point.
I watched the "Medical Nightmare" videos yesterday (the two half-hour reports from the TV station on Long Island, now available on YouTube). The Burrascano part was great.
But the interviewer kept bringing up insurance companies as the major problem. I don't think so.
Of course insurance is not happy with endless IV antibiotics.
But if the "medical experts" said they were necessary they'd pay, just as they do with cancer treatment.
Our problem is that shoddy science and murky motives are running the show, but most people can't believe that the medical establishment can be that wrong, and that unwilling to correct itself.
Posts: 74 | From MA | Registered: May 2007
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Cobweb
Unregistered
posted
Triumph! I know why the caged bird sings... something something something wings
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Wow, some BIG good news coming our way..... wonderful!
So, maybe this means that Lymie prayers are working? Hey, sure can't hurt.....
anytime during the hour.......... 6 p.m. west US (Pacific Time) 9 p.m. east US (Eastern Time)
-------------------- 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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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
webby- i love that pic LOL
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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quote:Originally posted by lorima: Our problem is that shoddy science and murky motives are running the show, but most people can't believe that the medical establishment can be that wrong, and that unwilling to correct itself.
Boy is THAT true!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi Cobweb
love the pic!
"hope is the bird who sings, while the dawn is still dark"
I'm singing Tinnie even though the dawn is still dark
* Dark meaning all the bad articles out there recently regaurding chronic lyme. Someday soon the truth will come out!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
What can be the hold-up? The suspense is killing me!
I will say one of my LLMD's told me something substantial was going to happen either this year or next at the latest.
You know with all the negative articles popping up in the NEJM & other places, it could be the dying dragon whipping it's tail back and forth trying to do as much destruction as possible in its dying moments.
Oh, please let it be a major breakthrough!!!!!!!!!
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
Was out of the country and came back to that obnoxious NEJM article. It was so frustrating to try to "comment" to all the different news agencies spreading their garbage about chronic lyme that I just gave up.
Now I hope this mystery news will re-energize me, because I am angry enough to take them on, but pretty discouraged with the tenaciousness of their continued attacks. It just seems way beyond reasonable medical practice!
PS to Breathwork--my son is also at UC Santa Cruz--thanks to you, and the "ice cream cure"-- cinnamon chocolate ice cream will be on my "to do" list on our next trip to Santa Cruz!!
Hoping for great news!
Ann
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
To heck with blackmail........I suggest we resort to bodily harm if tincup doesn't spill the beans SOON!!!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
EMBARGOED UNTIL 4 P.M. ET, WEDNESDAY, OCT. 10, 2007
Columbia University Medical Center Leads First Placebo-Controlled Study of Cognitive Impairment Due to Chronic Lyme Disease
Findings Show Severe Physical Dysfunction Among Patients & Benefit of Repeated IV Antibiotic Therapy to Provide Long-Term Symptom Relief
NEW YORK - Findings from the first placebo-controlled study of chronic cognitive impairment after treated Lyme disease (also known as chronic Lyme encephalopathy) demonstrate that patients report moderate cognitive impairment, physical dysfunction comparable to patients with congestive heart failure, and fatigue comparable to patients with multiple sclerosis. In the study, repeated intravenous (IV) antibiotic therapy was shown to be effective in treating cognitive dysfunction and the debilitating pain, fatigue and physical dysfunction associated with this disease.
The study, titled ``A Randomized, Placebo-Controlled Trial of Repeated IV Antibiotic Therapy for Lyme Encephalopathy,'' will be published on-line by the journal Neurology on Oct. 10, 2007. The study was led by Principal Investigator Brian Fallon, M.D., M.P.H., director of the recently established Lyme and Tick-borne Disease Research Center at Columbia University Medical Center (http://www.cumc.columbia.edu/news/press_releases/fallon_lyme_center.html).
The research was conducted jointly at the Columbia University Medical Center and New York State Psychiatric Institute and was funded by the National Institute of Neurological Disorders and Stroke (NINDS).
``These findings replicate results from a prior placebo-controlled trial of post-Lyme fatigue, which found positive treatment results from repeated antibiotic therapy. They also replicate the degree of physical impairment results demonstrated in another prior study of chronic Lyme disease,'' said Dr. Fallon (*see citations below).
``The door should be left open for physicians to prescribe medications as warranted, after a careful discussion with the patient of the potential risks and benefits.''
Dr. Fallon and his research team identified patients with cognitive problems that developed after being diagnosed with Lyme disease and which persisted or relapsed despite prior treatment, in order to determine whether patients who have already received the ``standard'' course of antibiotic treatment (three weeks of IV antibiotic therapy), would benefit from an additional 10 weeks of antibiotic therapy.
They also set out to determine whether patients relapse when taken off antibiotics or whether the alleviation of symptoms is sustained or enhanced with time.
Study participants (57 subjects: 37 patients with a history of Lyme disease and 20 controls) were divided into three subject groups: patients with a history of treated Lyme disease who were randomized to IV treatment with an antibiotic called ceftriaxone for 10 weeks; patients with a history of treated Lyme disease who were randomized to IV placebo for 10 weeks; and, healthy controls who were tested at the same time points as the patients to help to control for the practice effect on neuropsychological testing.
All patients had to meet criteria for memory impairment at the start of the study and they were also required to have a positive IgG Western blot for Lyme disease at study entry.
Key findings from the Neurology paper are as follows:
Cognition
� There was significantly greater improvement in cognition in the antibiotic treated sample at the primary end point for efficacy (week 12).
� When patients were retested three months after antibiotic treatment, the initial gains in cognition for the ceftriaxone-randomized sample were no longer present.
� Patients lose their cognitive improvement when IV antibiotic therapy is stopped.
Pain, Fatigue and Physical Dysfunction
� Among patients with greater severity at the start of the study, those randomized to ceftriaxone had more significant symptom relief of pain, fatigue, and physical dysfunction at week 12, as compared to those patients who did not receive ceftriaxone.
� Patients initially randomized to IV ceftriaxone who had greater severity of symptoms at baseline continued to show reduced pain and improved physical functioning at week 24. Improvement in fatigue continued, but was no longer statistically different from placebo at week 24.
� Repeated IV antibiotic therapy is effective in improving cognition, and among the more impaired, in improving pain, fatigue, and physical dysfunction.
Safety
� 18.9 percent of the 37 patients had serious adverse effects associated with either the IV line or a reaction to the antibiotic itself. Although all fully recovered, IV antibiotic therapy has the potential for serious risks, such as systemic infection, thrombus formation, or allergic reactions.
Clinical Recommendations
� Repeated IV antibiotic therapy should be considered a valuable option with long-term benefit for managing the disabling symptoms associated with chronic Lyme disease.
� Given the risks and benefits associated with IV antibiotic therapy, physicians and patients need to have a thoughtful discussion prior to initiating treatment.
*Citations from Recently Published Research
� The percentage of patients with meaningful improvement in fatigue noted at six months in this Neurology study (66.7 percent for patients treated with ceftriaxone vs. 25 percent for placebo) was comparable to the improvement in fatigue noted after repeated IV ceftriaxone therapy in a prior placebo controlled study (64 percent for drug vs. 18.5 percent for placebo) (Krupp et al., Neurology, 2003).
� The degree of physical impairment (comparable to congestive heart failure) was comparable to the impairment noted in another chronic Lyme study (Klempner et al., NEJM, 2001).
``Future research needs to focus on identifying a treatment approach that either allows not only for acute efficacy, but also long-term cognitive improvement; or, a treatment that could be given after the IV antibiotic therapy that would allow for sustained or enhanced cognitive improvement over time. Our Lyme and Tick-borne Disease Research Center continues to work towards finding these solutions,'' said Dr. Fallon. ``The most important lesson of this study is that physicians and patients need to collaborate openly to design an individual treatment plan to manage the long-term and complex suffering from symptoms of chronic Lyme disease.''
- ### -
Columbia University Medical Center provides international leadership in basic, pre-clinical and clinical research, in medical and health sciences education, and in patient care. The medical center trains future leaders and includes the dedicated work of many physicians, public health professionals, dentists, nurses, and scientists at the College of Physicians & Surgeons, the Mailman School of Public Health, the College of Dental Medicine, the School of Nursing, the biomedical departments of the Graduate School of Arts and Sciences, and allied research centers and institutions. www.cumc.columbia.edu
PATIENT QUERIES: - To schedule a clinical evaluation for patients with neurocognitive or neuropsychiatric problems from Lyme disease, please call 212-543-6508. - To schedule a research evaluation for possible participation in a diagnostic study, please call 212-543-6510. - Please note: As of June 4, 2007, the center is not currently conducting any active treatment trials.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Bravo!
Isn't the journal, Neurology, the one that published the companion article to the rotten guidelines.????
If for nothing else, Dr.Fallon deserves our everlasting gratitude for this statement:
``The most important lesson of this study is that physicians and patients need to collaborate openly to design an individual treatment plan to manage the long-term and complex suffering from symptoms of chronic Lyme disease.''
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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posted
Yay! Like everyone else, I've been waiting a LONG time for Fallon's research to be published!
Thanks for the news Tincup!
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Hubby needed some good news about now. Hard to believe but 250 mg of Ceftin daily for 5 days has put him in bed and housebound for a week now with what I hope turns out to be a severe herx reaction that he recovers from soon. Looks like Bartonella may be an even nastier bug than Babesia for him.
Looks like I need to get ahold of a copy of the journal article for hubby's PCP -- she couldn't understand why he wasn't well after 6 weeks of IV Primaxin at therapeutic dose. Of course the multiple tickborne infections complicate the picture, but according to the local PCP 7 - 10 days of IV Rocephin kills just about everything. Don't we wish it was true.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Perfect timing for my next LLMD appointment, next week.
I've been thinking about bringing up the topic of IV abx. He may want to wait until I'm done with my Babs treatment, but never know unless I ask!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
quote:Originally posted by Tincup: EMBARGOED UNTIL 4 P.M. ET, WEDNESDAY, OCT. 10, 2007
Does anyone know whether this mean that I shouldn't show this to my neurologist (1st appointment; non-LLMD) when I see him at 9AM tomorrow?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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I can't wait to find out what this is all about! Thanks for giving me back some hope!
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is this what she is referring to that she sent me a litle whiile ago?![[dizzy]](graemlins/dizzy.gif)
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hi Cobweb![[Eek!]](eek.gif)
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Thanks Tincup! ![[bow]](graemlins/bow.gif)
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