I am SOOOOOOOOOOOOOOOOOO happy! You will be too! See page three and break out the party hats!
We're gonna dance tonight!!!
In the sea of pollution that we are forced to wade through... I believe there is finally some relief on the way.
I think we will see it this week.. but don't throw me in the septic tank if we don't... ok?
Please be ready with pen and paper.. or key board if you prefer... as we will need to put on our dancing shoes and do a real nice rendition of the funky chicken when it is announced.
And IF I was able to announce it now.. you know I would.. so don't ask! It isn't MY place to do so... and I need to be respectful. I HATE secrets.. why do people tell me stuff I can't share! grrrrrrrrrrrrrrrrrrr...
But I am sooooooooooooo excited. And right now I see so many disappointed folks here.. and it breaks my heart. So I wanted to let you know there is some good stuff on the way.
We all need some hope... and I think the tide is turning in our favor.
Stay tuned.
[ 09. October 2007, 09:37 PM: Message edited by: Tincup ]
Posted by Jellybelly (Member # 7142) on :
You know Tinny I hate it when people do this Especially when it looks to be good news!!! Are you less likely to pop now? Now I want to pop, but don't know why!
Posted by tdtid (Member # 10276) on :
I obviously don't know what this is about, but I have to admit that it made me smile and give a positive vibe flowing through me.
And coming from YOU makes this very very credible, so thank you for the hope. Will look forward to hearing some good news for a change.
Cathy
Posted by nan (Member # 63) on :
I already did the funky chicken dance....hubby thinks I've lost it totally.
Posted by Lymetoo (Member # 743) on :
OH please, let the good news come true!!
Thanks, Tinny. I'll have to apologize now for referring to you as "Goofy." Posted by Tincup (Member # 5829) on :
Yes.. do the dance dear ones. Please enjoy.
As I said I don't like having to say I can't tell... but it wouldn't be proper to let the cat out of the bag.. as it isn't MY bag and it was years in the making.. so those responsible should have the pleasure.
I just KNOW how depressing it can get with bad news popping up all around... so MAYBE this will lighten your hearts and keep your spirits up.
Posted by Geneal (Member # 10375) on :
I am anxiously waiting with baited breath....
How wonderful it must be to be the one who can brighten other people's days....
TinCup-Your cup surely runneth over.
You always make my day anyways.
Hugs,
Geneal
Posted by CaliforniaLyme (Member # 7136) on :
I hope so. We need something.
Posted by Skyler (Member # 11549) on :
Thank you for the heads up on good things to come!
i am very excited! and in a better mood now!
Posted by Cobweb (Member # 10053) on :
Even the IDSA can't hold back the tide... of truth.
I hope it has something to do with the IDSA eating crow.
Then again, I also hope it has something to do with Dr. J.
Posted by Melanie Reber (Member # 3707) on :
It will be so nice to hear the good news! Are we guessing for now? If so...here is my wish-list!
1. Dr. J in CT was cleared of all charges, and a full apology is on the way?
2. Blumenthal has won the anti-trust suit, and the IDSA will be forced to withdraw their guidelines?
3. Dr. J in NC is opening a new clinic in a state that has more sense?
4. Dr. F has finally published his ground-breaking study that necessitates long-term ABX usage?
Posted by breathwork (Member # 567) on :
OK, not to be too pushy....but....
Are we talking hours, days weeks, months?
The anticipation is killing me....a rough estimate would be dandy...
I'm not very good with suspense...
Carol Ann
Posted by Michelle M (Member # 7200) on :
Truth WILL win.
I just can't wait!!!
Michelle
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by Melanie Reber: It will be so nice to hear the good news! Are we guessing for now? If so...here is my wish-list!
1. Dr. J in CT was cleared of all charges, and a full apology is on the way?
2. Blumenthal has won the anti-trust suit, and the IDSA will be forced to withdraw their guidelines?
3. Dr. J in NC is opening a new clinic in a state that has more sense?
4. Dr. F has finally published his ground-breaking study that necessitates long-term ABX usage?
5. All of the above plus
6. CanLyme has a booth in San Diego?
7. LDA has a booth in San Diego
8. ILADS guidlines supplant IDSA guidlines
9. ALL LLMD's are given immunity from prosecution.
10. Long term consumption of ice cream cures lyme disease.
Cobby
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Melanie Reber: 2. Blumenthal has won the anti-trust suit, and the IDSA will be forced to withdraw their guidelines?
This would be the one I'd want for sure!!!!
But she said "years in the making." hmmmm
Ice cream cures Lyme disease. That would be my second choice!! Posted by Tamera (Member # 13309) on :
I'm soooooo new to all of this, but I find I can share in the excitement of the anticipation of good news with all of you that I know have been suffering for so long. I've had the symptoms for a long time, but am still waiting on a diganosis...pending igenex results. I don't know much, ok, nothing about all the "political" aspects of lyme...I'm reading though through my brain fogged memory...but can I enter a vote for the one thing I DO understand? The ice cream cure??????? Posted by Parisa (Member # 10526) on :
How about a clue?
A) Wonder pill that cures the nightmare of Lyme B) Wonder pill that makes the IDSA go away?
Of course, A would also make B go away.
Posted by sometimesdilly (Member # 9982) on :
good news? YAY! we could use some of that flavor.
to add to the hope-it-is-this list;
1. at least a dozen other AG's have signed on to sue IDSA too, so it is not just poor Blumenthal duking it out with those bad guys all alone.
2. Some rich patron has given Dr. J. a million dollars so he doens't have to worry about dwindling monies in his legal fund anymore.
3. The White House is going to issue a press release saying Pres Bush has chronic Lyme, that he is being treated by one of our LLMD's,and that by executive order, henceforth in the kingdom everyone with Lyme will be treated with antibiotics until they are well, no matter how long it takes and whether or not they have insurance.
But you know what, TC? Any good-good news would be good enough.
dilly
Posted by Lymetoo (Member # 743) on :
Hey dilly....You're GOOD! Posted by Cobweb (Member # 10053) on :
I count 15 possibilities at this point-and would like to add
16. the opening of a treatment center just for lyme(which was mentioned a long time ago by none other than TC)
And if I'm right, I get to be the first patient , all expenses paid.
Are you enjoying this TC.?
Any of us close?
Cobby
Posted by bettyg (Member # 6147) on :
years in the making list....
17. the federal and state lyme bills being signed off; PRES. BUSH MAKING IT OFFICIAL!!
18. LYME BILL WILL MAKE SURE WE DO NOT HAVE TO PAY OUT OF POCKET FOR OUR LYME DISEASE APPTS., TREATMENTS, MEDS, ETC.
19. insurance companies will have a GRANDPARENT clause and will REIMBURSE US BACK FOR ALL MONEY SENT OUT OF POCKET!
well, tincup said we'd get the NEWS SOMETIME THIS WEEK....will be a long 6 days!! Posted by sometimesdilly (Member # 9982) on :
aw shucks, toot-toot- you;ve made me blush.... Posted by trueblue (Member # 7348) on :
quote:Originally posted by breathwork: OK, not to be too pushy....but....
Are we talking hours, days weeks, months?
The anticipation is killing me....a rough estimate would be dandy...
I'm not very good with suspense...
Carol Ann
I'm with Carol Ann! (but am also smiling)
I like everyone's guesses and wishes but would the ice cream cure override the chocolate cure? I hate these 2 standards of care things. Posted by 5dana8 (Member # 7935) on :
Thank God...some good news
I can't wait to hear, would a bribe do it? How about a years supply of icecream?
Thanks a head of time Tinnie Posted by meg (Member # 22) on :
Well, it's been a Rocky Road, but perhaps a chocolate ice cream cure?
....I'm so ready for good news!
Posted by sometimesdilly (Member # 9982) on :
geez, i'd feel deprived listening to all this talk of ice cream, BUT
i bought a quart of chocolate coconut almond ice cream from a local creamery this afternoon.. whew.
i'm raising a spoon full of incredibly smooth rich dark chocolate fresh nuts freshly grated coconut good stuff to all of you and to happier days-
dilly
Posted by Tincup (Member # 5829) on :
You guys are good! And goofy too! HA!
This is MY personal favorite.. although any of the others would be PERFECT too.
"Long term consumption of ice cream cures lyme disease."
Hint? You want a HINT?
Ok.
ONE hint only!!! I already feel bad I can't say.. so don't make ME feel worse.
I don't know how many guesses you all listed.. but it is listed on the post.
That's it! I say NO more!
PS.. I think you ought to make bets to see who is the goofiest Lymenetter here. WHO can guess the right answer?
Posted by Tincup (Member # 5829) on :
Oh.. and when will we know?
Suppose to be this week.. but again.. I am not responsible for any delays.
Posted by artraveler (Member # 12764) on :
Alright, alright everyone!!! Enough talk about ice cream!!! Especially chocolate ice cream!!!
I'm sitting here with a qt. of bunny tracks ice cream in my freezer, that has learned my name!!!
I'm trying so hard to be good!! I only took my abx an hour ago!!!! Posted by sometimesdilly (Member # 9982) on :
ok- so logic leads to only one or two places already named.
and since in any case any one of the possibilities already named would be deliriously happy news, aaaahhhhh..
thanks, TinCup...
dilly
Posted by sunnymalibu (Member # 9586) on :
It must be one of these per Tincup's post which was: (This is MY personal favorite.. although any of the others would be PERFECT too.
"Long term consumption of ice cream cures lyme disease."
Hint? You want a HINT?
Ok.
ONE hint only!!! I already feel bad I can't say.. so don't make ME feel worse.
I don't know how many guesses you all listed.. but it is listed on the post).
These are listed on that post that I (think) Tincup is referencing...
6. CanLyme has a booth in San Diego?
7. LDA has a booth in San Diego
8. ILADS guidlines supplant IDSA guidlines
9. ALL LLMD's are given immunity from prosecution.
10. Long term consumption of ice cream cures lyme disease.
Any thoughts? #8?
Posted by trueblue (Member # 7348) on :
Not to sound greedy but can we have all those things AND ice cream?
Kidding, any one will do and I will do the happy dance. (Be afraid, very afraid... you guys have never seen me dance!)
Ok, I'll sing in the meantime...
The waiting is the hardest part Every day you get one more yard You take it on faith, you take it to the heart The waiting is the hardest part...
(btw, my singing is only marginally better than my dancing)
Posted by Boomerang (Member # 7979) on :
OH my gosh!! I can't wait to hear the good news. Soon? Soon? Oh please, soon?
I'm guessing it is #8?????
[ 08. October 2007, 12:37 AM: Message edited by: Boomerang ]
Posted by 5dana8 (Member # 7935) on :
Hi Tinnie
"The hint is listed on the post"
On your first post or someone else's post?
Your post I got 3 references to water "Septic Tank" "sea of pollution" "the tide is turning in our favor" if it has something to do with water I am really clueless...
or just plain ole clueless Posted by trueblue (Member # 7348) on :
quote:Originally posted by 5dana8: Hi Tinnie
"The hint is listed on the post"
on your post or the whole thread?
Your post I got 3 references to water "Septic Tank" "sea of pollution" "the tide is turning in our favor" if it has something to do with water I am really clueless...
or just plain ole clueless
Posted by Boomerang (Member # 7979) on :
lol dana,
I think we are all clueless. After reading your post, I'm wondering about water also. Posted by trueblue (Member # 7348) on :
Oh, fine, all this talk of water, now I have to pee! Posted by GardenLymer (Member # 6008) on :
Curious...(not really asking for a hint here....BUT!!!) LOL
Is this so big that we might hear of it on the news before reading it here?
That wouldn't be letting the cat out of the bag in any way for you! Posted by sunnymalibu (Member # 9586) on :
I'm betting on #8. Although it would be great if all LLMD's were given immunity from criminal prosecution there would have to be lenghty hearings and I don't think that has happened.
Posted by Jellybelly (Member # 7142) on :
Something that involves research would be years in the making. Melanie's last one on the list would take years.
quote:Dr. F has finally published his ground-breaking study that necessitates long-term ABX usage?
Posted by Lymetoo (Member # 743) on :
[QUOTE]Originally posted by trueblue: I like everyone's guesses and wishes but would the ice cream cure override the chocolate cure? I hate these 2 standards of care things. Another AMEN!! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Jellybelly: Something that involves research would be years in the making. Melanie's last one on the list would take years.
quote:Dr. F has finally published his ground-breaking study that necessitates long-term ABX usage?
OOOOOO... Good one!! Posted by cbb (Member # 788) on :
I'm betting Melanie has it on her Wish List.
And concerning ice cream - I believe it has curative powers, especially when it contains chocolate. My own personal research seems to prove it's true.
Tincup, we'll be staying on LymeNet a lot this week....checking for the big announcement!! Posted by bettyg (Member # 6147) on :
well, i'm guessing on TWO WINS
NO. 1...DR. J IS CLEARED, ETC.
NO. 2 ... BLUMENTHAL WINS ...ILADS VS IDSA ducks!
Posted by Tincup (Member # 5829) on :
Well you've got me laughing now.
Yes. Chocolate and ice cream. What a choice!! HA!
Sunny... and others who don't know I am not the brightest bulb on the tree...
PLEASE don't try to read into my posts for hidden clues. You give me too much credit (but thank you). I have to admit I am not nearly smart enough to plant hidden hints in them... but I am glad you thought I MIGHT have been!
Garden said.. "Is this so big that we might hear of it on the news before reading it here?"
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.
Posted by breathwork (Member # 567) on :
After visiting my daughter at college today, I picked up a half gallon of cinnamon chocolate hand made ice cream at Mariannes, the best ice cream parlor in Santa Cruz, CA...or any where near abouts!
I think it has curative properties for sure!
Carol Ann
Posted by Robin123 (Member # 9197) on :
The Detroit tap water cure for Lyme mentioned by the IDSA in the NEMJ article this week actually has been found to work???
Posted by AliG (Member # 9734) on :
Please tell me that it's something that means I don't have to have the IV jammed into my arm today.
I'd much rather have chocolate or ice cream or chocolate AND ice cream or chocolate ice cream.
I know if it was anything regarding easier Tx or cure you wouldn't hold that back.
I hope it's something that means less fighting with ducks and insurance companies.
Of course I also hope it means Dr.J is safe from persecution and they'll update that pediatric "Red Book"!
OH please!!!!!!!! I need good news today!
Did I mention in my post about not hearing from the infusion company that I DON'T HANDLE SUSPENSE VERY WELL?!
PLEASE tell me!!!!!PLEASE!!!!PRETTY please!!!! Pretty, pretty please with chocolate & ice cream on top!!!
What if I get taken out by a herx & can't crawl to my computer all week? Please tell me.
I NEED GOOD NEWS!!!!!!!!!!!!!
You're a big tease, Tinny Teaserpants! Posted by Jellybelly (Member # 7142) on :
TC, will it make the NATIONAL news or will it be something in a local news mostly?
Posted by Cobweb (Member # 10053) on :
I know I know I know pick me pick me pick me OR
Watch the ABC news cast tonight-WJL out of Washington DC.
Tinny can't tell us until after the broadcast-and neither can I.
Gee, I'm getting my smarts and my good looks back all at the same time.
Just so no one gets their hopes up too high-it does not involve ice cream-
but there's still time for us to have an ice cream party before the broadcast-
everybody bring their favorite flavor-with toppings.
Cobby
Posted by Jellybelly (Member # 7142) on :
So who told you Webby? Is it a local news story in DC? or national? Will I be able to see it Cali?
Posted by Marnie (Member # 773) on :
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?!
;-)
Posted by cantgiveupyet (Member # 8165) on :
Webby will we know today?
Posted by 5dana8 (Member # 7935) on :
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
Posted by Lymetoo (Member # 743) on :
OK, OK....I think this entire thread should be deleted or moved to Off Topic because of all the discussion of chocolate and ice cream!
I can see lymies the world over heading to Baskin-Robbins!
Such a disgrace that some are trying to lead others to walk the plank!
Posted by Soleilpie (Member # 8481) on :
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!
Posted by shazdancer (Member # 1436) on :
The release of a certain movie, perhaps?
Posted by aklnwlf (Member # 5960) on :
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!!
Posted by BorreliaBrain (Member # 7603) on :
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... Posted by Geneal (Member # 10375) on :
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
Posted by meg (Member # 22) on :
I only get generic ABC, will THAT work?? Oh my! Posted by lymednva (Member # 9098) on :
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. Posted by Tincup (Member # 5829) on :
"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.
In the meantime..
ICE CREAM and CHOCOLATE for all!!!
Posted by radfaraf (Member # 11909) on :
*gets in line for ice cream* Posted by trueblue (Member # 7348) on :
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?
Posted by trueblue (Member # 7348) on :
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) Posted by sometimesdilly (Member # 9982) on :
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) Posted by LocalMan (Member # 11648) on :
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
Posted by bettyg (Member # 6147) on :
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] Posted by Tincup (Member # 5829) on :
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!
Night all.... sweet dreams.
Posted by breathwork (Member # 567) on :
It's not true?
sniff sniff....
Posted by Geneal (Member # 10375) on :
The suspense is about to do me in.....
Please say it is today for the good news.
Hugs,
Geneal
Posted by lorima (Member # 11925) on :
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.
Posted by Cobweb (Member # 10053) on :
Triumph! I know why the caged bird sings... something something something wings Posted by Truthfinder (Member # 8512) on :
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)
webby- i love that pic LOL
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tincup: No.. that isn't it.. but nice try.
MUCH bigger news than my stuff!
Good!! I'm glad there's MORE to come!! Posted by Lymetoo (Member # 743) on :
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!!!!
Posted by 5dana8 (Member # 7935) on :
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!
Posted by Tincup (Member # 5829) on :
So far not today... MAYBE tomorrow?
Posted by Kayda (Member # 10565) on :
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
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tincup: So far not today... MAYBE tomorrow?
You're such a tease!
Kayda....it better NOT be NEXT year!!!! Posted by Kayda (Member # 10565) on :
Lymetoo,
That was too hard for me to hear, so I promptly put it out of my mind.
Kayda
Posted by Kayda (Member # 10565) on :
Tincup,
If they don't tell us by the end of next week, will you tell us?
Please, please, please........
Kayda
Posted by ByronSBell 2007 (Member # 11496) on :
Tincup, I am going to have to start blackmailing you if you don't hurry up and post whatever the excitement is! Posted by Lymetoo (Member # 743) on :
She likes ice cream and chocolate chip cookies, Byron! Posted by Ann in CA (Member # 97) on :
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
Posted by Boomerang (Member # 7979) on :
To heck with blackmail........I suggest we resort to bodily harm if tincup doesn't spill the beans SOON!!!
Posted by Tincup (Member # 5829) on :
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.
Posted by Ann-OH (Member # 2020) on :
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.''
Yippee and thanks, TC!
Ann - OH
Posted by Geneal (Member # 10375) on :
I saw the post and thought Darn! I'll be one of the last to see it.
Happy that I was able to view it early.
Happier with the study results!
Hope they use the NEJM article for toilet paper for a few days
While smiling at our "great" news.
Thanks for being the bearer of information that is in "our" collective favor.
Hugs,
Geneal
Posted by Ann in CA (Member # 97) on :
Thanks for the early peek at the study! Hope it gets some minds a little more open.
Ann
Posted by artraveler (Member # 12764) on :
Holy smokes!!! Thanks Tincup! Posted by Soleilpie (Member # 8481) on :
Yay! Like everyone else, I've been waiting a LONG time for Fallon's research to be published!
Thanks for the news Tincup!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: Hope they use the NEJM article for toilet paper for a few days
Ditto! Whew! It's about time that thing was published!!
Posted by seibertneurolyme (Member # 6416) on :
Thanks TinCup!!!
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
Posted by GardenLymer (Member # 6008) on :
Bravo, Tincup!!! I'll say it again...
The tide is changing... The tide IS changing... THE TIDE IS CHANGING!!!!
Posted by meg (Member # 22) on :
Wow, great news TC!
Whew! It's about time that thing was published!!
And a Double Ditto and Amen to that!! Posted by lymednva (Member # 9098) on :
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!
Posted by canbravelyme (Member # 9785) on :
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?
Posted by Skyler (Member # 11549) on :
Oh thank god!
Finally a win for the Lymies! Thank god.
Funny that this week the new england medical journal released something much different.
Thank god we got this though!!!
oh and canbrave, I am in the same situation. I have an apt with my LLMD at 9 am...hmm
Posted by Tincup (Member # 5829) on :
I see happy faces!! That's great!
Good news, eh?
BUT..
someone asked..
"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?"
Let me tell you something. Oops!
I got this info just as another bad storm was rolling through and was so anxious to get it to you... as you all have waited LONG enough.. and truth is I didn't have time to even READ it myself cause I had to post it quickly and shut down the computer to avoid the power surges and lightening... which DID occur so I am glad I posted and ran!
Sooooooooooooooooooooo...
Guess who just got fussed at for sending it out too soon?
Yeah.
Soooooooooooooooooooooo.. since I am already in the dog house... I'd say go ahead and give your good news to your LLMD tomorrow. I'll have to take the heat on it.. but the news is too fantastic NOT to share.
And you are right. Punishing me as a kid was tough. If I KNEW I was gonna be in trouble for something... I figured why not go ahead and be in more trouble and get it over with while I had a chance.
HA!
But I am glad you all like the news. More info about it later.
Sleep well.. the sweetness of this report should be enough to make us all have nice dreams.
Posted by Dawn in VA (Member # 9693) on :
Tincup, you are friggin AWESOME!
May your cup always runneth over.
Dawn
Posted by bettyg (Member # 6147) on :
tincup posted in OFFICIAL GOOD NEWS that the are going to work on something for US LYMMIES TO PUBLICIZE this to the media, etc. since no onne is hired to do that sort of thing.
personally, i'd make a copy of his official statements and have there with me.
i'd give one to LLMD; ///////////////////
NOT to non-llmd
UNLESS TINCUP LETS YOU KNOW DIFFERENT OK!
Posted by breathwork (Member # 567) on :
Tincup...
Asking for forgiveness is often easier than asking for permission...and in this case, I think you'll be forgiven...Your rep precedes you....
Thank you...
Carol Ann
Posted by LocalMan (Member # 11648) on :
Does anyone know if there is any comparable study in the works re: use of oral antibiotics?
And, I hate to ask this, but...did all the patients relapse once off the IV, or did any have lasting success?
I know this is VERY important from the medical case-building perspective, I just find it discouraging from the individual-with-lyme perspective.
LM
Posted by Geneal (Member # 10375) on :
Dear TinCup,
I'll gladly post your bond to get you out of the doghouse.
You did much better at holding it in than I ever would.
If it is a good suprise I just can't hold it in.
So....what is bail?
I can get my hands on some chocolate from Germany (absolutely sinful ).
Hugs,
Geneal
Posted by canbravelyme (Member # 9785) on :
Thank you TC
It's actually a non-LLMD. I'll keep it to myself unless I actually think it will produce results with my treatment for seizures. IOW, most likely: kept to myself.
xoxoxox
CBL.
Posted by roro (Member # 13383) on :
wow, this is great news!!! Didn't the columbia university research just start this year? how can this be "years in the making"
I was told many LLMD's didn't want to do studies because then they would have to have a placebo group, and they didn't feel comfortable giving someone a placebo if they were very sick and needed medicine.
localman - I think that if someone is kept on oral after they finish the IV they probably won't relapse. even if they just stay on low-dose of doxy. i know a guy been on 100mg doxy twice a day for three years now and he never relapsed. he said he will probably be on it the rest of his life. and he had such bad heart damage, he had to be on IV and has a pacemaker now.
Posted by Truthfinder (Member # 8512) on :
Wow, this is great news, and talk about perfect timing in view of the other junk being published....
I hope somebody makes sure AG Blumenthal has a copy of this sitting on his desk at the earliest possible moment.....?
Tracy
Posted by tdtid (Member # 10276) on :
Outstanding News!!!!! Finally clinical trials to support what we've always known, that abx really work for lyme.
One question: In the article is the following paragraph ``These findings replicate results from a prior placebo-controlled trial of post-Lyme fatigue, which found positive treatment results from repeated antibiotic therapy."
The question is, what is this other study? IDSA is constantly quoted as saying there is no clinical data to support long term abx use is effective for lyme disease, yet this quote suggests there has been data.
Certainly this NEW clinical study will get wide spread attention, particularly based on the increasing lyme awareness, but has there been evidence to support abx's effectiveness against lyme prior to this?
Thanks again, TC!!!!
Cathy
Posted by CaliforniaLyme (Member # 7136) on :
They need to have a Press Release about this sent to all the places that did articles re NEJM-
Good for Fallon- hope it gets write-ups somewhere- !!!
Posted by Aniek (Member # 5374) on :
Tsk tsk TC! Breaking the rules like that!
I was very excited to receive the press releaes via email this morning. This is truly wonderful news.
I'm looking forward to reading the paper and being able to counter the evil study in my article that I promise to edit and try to publish before next summer.
Posted by ldfighter (Member # 9405) on :
quote:Originally posted by tdtid: One question: In the article is the following paragraph ``These findings replicate results from a prior placebo-controlled trial of post-Lyme fatigue, which found positive treatment results from repeated antibiotic therapy."
The question is, what is this other study? IDSA is constantly quoted as saying there is no clinical data to support long term abx use is effective for lyme disease, yet this quote suggests there has been data.
It's the Krupp study ("STOP-LD"), I think it was also published in Neurology. 4 weeks of repeat IV for patients who had severe fatigue after lyme. They found statistically significant improvement in fatigue (not cognitive symptoms, but the patients didn't have significant cognitive symptoms to begin with), then the authors said don't use IV because fatigue is a "nonspecific symptom" and it's too risky.
The IDSA distorted the actual findings by saying there's no evidence abx helped. ???? The kind of stuff we can't let them get away with.
So there are now 3 NIH-funded controlled clinical trials: Klempner, Krupp and Fallon. If you just look at whether or not abx helped people vs. placebo, 2/3 of the studies say YES!!
I'm glad Fallon has the guts to take them on. Can't imagine what he's been through to get this work published.
Ann - OH
Posted by Michelle M (Member # 7200) on :
Holy MOTHER!!!
GO, Dr. Fallon!!
And his study was so rigorous and so tightly controlled that even the freakin IDSA couldn't argue with it --- unlike THEIR slipshod studies and suspect conclusions. For which I grovel with gratitude!!!
Michelle
Posted by lymednva (Member # 9098) on :
Ann-OH, it's embargoed until this afternoon. That means it is released to the press, but is not to be published/announced until 4 PM. That's why you can't find it yet.
My ex was a journalist, so I'm privy to the lingo! Posted by 5dana8 (Member # 7935) on :
Thanks Tincup for posting this great news
yeah!!!!!!!!!!!
I always knew from personal experience that IV abx helped me alot.
Now I hope he does a study that shows orals will help KEEP a person in remmission that the IV's brought. Because in the study the gains where lost after stopping the IV treatment...Did I read that right?
Hope I am making any sense at all.
Posted by Ann-OH (Member # 2020) on :
Thanks, Lymednva. I know about embargoed press releases and understand that the press release is not allowed to be published until 4:00 today.
I was talking about the publication of the study in the journal, Neurology. This is what the press release says:
[quote] 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. [end quote]
If you go to the website for Neurology, you will find that the current issue was published yesterday - October 9th, and there is no reference to the study.
That is what I found confusing.
Ann - OH
Posted by Melanie Reber (Member # 3707) on :
This has been a LONG time coming! Zippity-do-dah!
(BTW...what do I win?) Posted by Mo (Member # 2863) on :
aaaah, now we're cookin' with gas.
..at the very least, at this point, the guidelines seem medically biased and baseless at best.
(they do also by their small and skewed research pool)
this greatly reinforces your basic freedom to choose your medical care, and that there are clearly two standards of care.
i'm hoping the attorney general will uncover critical info in his investigation regarding IDSA guidelines for treatment, it's authors, and anti-trust issues.
mo Posted by BorreliaBrain (Member # 7603) on :
Yay! I guessed it, i guessed it... maybe I'll break down and have just a *little* ice cream...
But I am also confused by why it's not showing up in the table of contents for the Oct. 9th edition of "Neurology". It really should be there, press blackout or not.
Is it going to be published online first, and in print only in the next edition of "Neurology?" Anybody know?
A
Posted by Tincup (Member # 5829) on :
AH! More happy faces!!!
I LOVE IT!
As for any more info on what is what.. or why it is so.. or not...
Ya don't think they are going to tell old blabber mouth anything else here, do ya?
HA!
And thanks for the offer for bail money to get me out of the dog house. And for the offer of chocolate.
But do note.. I had NOTHING to do with this study... I couldn't even be in it.
I'm just bringing the good news to folks who REALLY deserve to have some. And YES.. I almost BUSTED at the seams trying to keep my big mouth shut.
Oh.. and I DO believe Melanie wins the prize for guessing right first off the bat.
Yippee to Melanie!!! But I guess SHE gets the chocolate?
Posted by Beverly (Member # 1271) on :
WTG Tincup!!! yay!!!
Posted by Tincup (Member # 5829) on :
Dang, to see it, you gotta pay up.
Posted by Melanie Reber (Member # 3707) on :
It looks as though one must have a subscription to get the whole thing. Can anyone help us here? ..........................................
A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy
B. A. Fallon MD*, J. G. Keilp PhD, K. M. Corbera MD, E. Petkova PhD, C. B. Britton MD, E. Dwyer MD, I. Slavov PhD, J. Cheng MD, PhD, J. Dobkin MD, D. R. Nelson PhD, and H. A Sackeim PhD
From the Department of Psychiatry (B.A.F., J.G.K., K.M.C., E.P., I.S., J.C., H.A.S.), Department of Biostatistics (E.P.), Department of Neurology (C.B.B.), Department of Medicine (E.D., J.D.), and New York State Psychiatric Institute (B.A.F., J.G.K., K.M.C., E.P., I.S., J.C., H.A.S.), Columbia University, New York; and Department of Cell and Molecular Biology, University of Rhode Island, Kingston (D.R.N.).
* To whom correspondence should be addressed. E-mail: [email protected].
Background: Optimal treatment remains uncertain for patients with cognitive impairment that persists or returns after standard IV antibiotic therapy for Lyme disease.
Methods: Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment. Healthy individuals served as controls for practice effects. Patients were randomly assigned to 10 weeks of double-masked treatment with IV ceftriaxone or IV placebo and then no antibiotic therapy. The primary outcome was neurocognitive performance at week 12--specifically, memory. Durability of benefit was evaluated at week 24. Group differences were estimated according to longitudinal mixed-effects models.
Results: After screening 3368 patients and 305 volunteers, 37 patients and 20 healthy individuals enrolled. Enrolled patients had mild to moderate cognitive impairment and marked levels of fatigue, pain, and impaired physical functioning. Across six cognitive domains, a significant treatment-by-time interaction favored the antibiotic-treated group at week 12. The improvement was generalized (not specific to domain) and moderate in magnitude, but it was not sustained to week 24.
On secondary outcome, patients with more severe fatigue, pain, and impaired physical functioning who received antibiotics were improved at week 12, and this was sustained to week 24 for pain and physical functioning. Adverse events from either the study medication or the PICC line were noted among 6 of 23 (26.1%) patients given IV ceftriaxone and among 1 of 14 (7.1%) patients given IV placebo; these resolved without permanent injury.
Conclusion: IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed.
Okay! This solves my questions. It is a weekly, which they publish on Tuesday and then publish "E-publish" ahead of print on Thursday. When does this come out on paper???
Melanie, Thank you for the abstract!
Now for Halperin. How do we get that piece of inspiration?
Ann - OH
Posted by Melanie Reber (Member # 3707) on :
Hi Ann,
I thought that what was provided on page 3 was a press release ABOUT the study, and not necessarily THE study itself.
Am I mistaken? (It wouldn't be the first time) Posted by Tincup (Member # 5829) on :
"Now for Halperin. How do we get that piece of inspiration?"
I have a copy down at the outhouse... but it is being used right now for the only thing it was meant for.
Posted by nan (Member # 63) on :
I think you are correct, Melanie. What we have seen is an Abstract.
Posted by Melanie Reber (Member # 3707) on :
Hahaha...OK, I was answering a comment on Ann's post above mine...but now it looks like her post was changed???
(either that or I am really loosing it!)
No need to comment on that, TC!
Posted by BorreliaBrain (Member # 7603) on :
Uh oh uh oh, what is a Halperin article doing in the same edition????? What's going on?
Is the esteemed journal trying to hedge its bets by publishing a pro and con at the same time? What's going on here?
Can anyone get a copy of this latest piece of pure inspiration from the esteemed *Dr.* Halperin? I gotta see it...
Posted by Ann-OH (Member # 2020) on :
Yep, Melanie, I saw my error and repaired it. Don't know what I was thinking.
Ann - OH
Posted by AliG (Member # 9734) on :
ALL HAIL TINCUP!!!!
You can't imagine how much I needed this news! (OK, maybe you can )
It was even worth dragging my very, very sorry butt back and forth to my computer for a few days.
Also, my compliments on that magnificently worded press release.
I must say, Tincup ******YOU ROCK!!!!!******
Thank you SO much!!!!!!
(great big(no)) H U G E hugs, Ali
Posted by 5dana8 (Member # 7935) on :
Kelmo
I don't think you have to pay ~ First click on Tinne's link on page 4 "Well Looky here".
Then scroll down to where Dr. F's study is & click( check the left hand box next to it) or any other study you want to view
Then scroll back up & click on the box that says Get "All Checked Abstracts Box" Thats should get you in.
Unless you where referring to the Halperin Study...Seems to be the only study or article that can not be viewed. Hummm.....kinda strange
Posted by 5dana8 (Member # 7935) on :
sorry, double post Posted by nan (Member # 63) on :
AAN Practice Parameter: Antimicrobial Therapy of Neuroborreliosis Experts provide evidence-based recommendations for the treatment of Lyme disease and discuss the evidence against persistent infection in "post-Lyme syndrome."
Ongoing controversy surrounds the choice of antibiotic for the treatment of neurologic Lyme disease, the appropriate duration of treatment, and whether or not chronic symptoms of "post-Lyme syndrome" are due to persistent or relapsing infection.
A panel of experts from the U.S. and Europe, who have published extensively about Lyme disease, developed this evidence-based review of the treatment of neurologic Lyme disease for the American Academy of Neurology.
The panel performed a literature search of studies published from 1983 to 2003. From the resulting 353 citations, 122 potentially relevant articles were reviewed in detail, of which 37 ultimately were used for the analysis.
There were sufficient data to conclude that neurologic Lyme disease in adults and children age 8 years is effectively treated with a 2- week course of parenteral penicillin,ceftriaxone, or cefotaxime.
There was no evidence of antibiotic resistance in Borrelia burgdorferi. European studies provided substantial evidence that oral doxycycline is as efficacious as parenteral antibiotics in patients who have Lyme-associated meningitis, facial nerve palsy, or radiculitis.
Evidence from three trials suggested a lack of benefit from prolonged antibiotic treatment of "post-Lyme syndrome" (symptoms persisting or recurring after appropriate treatment in the absence of evidence of ongoing infection).
Comment: Misunderstanding of Lyme disease has created a demand by patients with pain, fatigue, and perceived cognitive trouble to seek prolonged parenteral treatment for Lyme disease and "post-Lyme syndrome."
This study provides evidence-based recommendations for appropriate types and duration of antimicrobial therapy for neurologic Lyme disease. It also provides reassurance that the disease can be treated and highlights the lack of evidence that post- Lyme syndrome is due to active B. burgdorferi infection that would require prolonged antibiotic therapy.
-- Karen L. Roos, MD
Dr. Roos is John and Nancy Nelson Professor of Neurology, Indiana University School of Medicine, Indianapolis.
Published in Journal Watch Neurology October 2, 2007
***Keep in mind that this Journal Watch is sponsored by NEJM, and the editors pick their favorites. Klempner is one of the Associate Editors.***
Anyone smell a rat?????????
Posted by Boomerang (Member # 7979) on :
Great news!! Thanks tincup!
Posted by gwenb (Member # 7217) on :
I was sorry to hear this . . .
"Fallon said he does not believe live bacteria persist in patients and cause their symptoms, but that certain antibiotics have properties beyond killing bacteria and act on neurotransmitters in the brain."
Maybe he was mis-quoted? Posted by bettyg (Member # 6147) on :
gwen, for the link you posted, i read it.
we can rate article and 2 comments are below!
3 votes for 4. of FALLON'S STUDY *******************************
COMMENTS Showing posts 1 - 2 of 2
Eli Palo Alto, CA Reply � |Flag |#1 5 hrs ago
I have serious doubts about the appropriate context of opinions contributed to Brian Fallon about the persistence of Lyme infection.
The patients in his study were all documented to be INFECTED, all after having had at least three weeks of IV antibiotics prior to the study - that's what the whole business of meeting the CDC surveillance criteria is about, demonstrating in very strict terms that the patients are still infected. The CDC admits that their surveillance criteria catches only a small percentage of cases and that the true incidence is anywhere from 6 to 12 times higher.
So if that's not "chronic" infection, what is? All of the patients in this study had at least 3 weeks of IV antibiotics prior to the study, some had more, all were proven to be infected by CDC surveillance criteria. How exactly do you get that Fallon doesn't believe live bacteria persist when he narrowed his study only to people he could prove in strict terms had persistent infection?
Patients then improved with ten weeks of antibiotic treatment as compared to a placebo. They relapsed OVER TIME, not immediately, when the drugs were withdrawn.
Wormser, Dattwyler, Sigal, et al, are well known for their A PRIORI views about Lyme. How about looking at the evidence and writing something that doesn't hammer readers with their flat earth bias?
Can you imagine a ten week double blind study for any other infectious disease? In spite of more evidence that with just about any other disease that longer treatment helps patients with Lyme disease (mainly those who are infected for a long time before diagnosis), the media continue to let the usual suspects twist the facts to the detriment of patients.
allmine Huntington Station, NY Reply � |Flag |#2 4 hrs ago
i have had lyme for 15 years. i hsd it for over 2 years before they figured out what was "wrong" with me. it is horrible what the disease can do to your body. i am in constant pain and have vision problems. i want to be in that study so maybe i can get some help and relief.
Showing posts 1 - 2 of 2
Posted by dontlikeliver (Member # 4749) on :
As I recall, it was said at the Columbia Research Center's opening that they weren't SURE that the bacteria persisted or if the antibiotics had some otehr quality that improved people's lives.
I am glad this study has come out, but not sure it will help a lot of us who are continually trying to convince our docs to prescribe abx for us after longer than 12 weeks for instance...............this study says nothing about abx after 3-4 years and more, etc...
So, on the one hand, I want to show my GP (who writes my rx's under LLMDs guidance) but on the other hand, I don't want to show him as he might just point out that the study does not say that abx are beneficial after 3+ years.
Posted by Soleilpie (Member # 8481) on :
quote:Originally posted by gwenb: I was sorry to hear this . . .
"Fallon said he does not believe live bacteria persist in patients and cause their symptoms, but that certain antibiotics have properties beyond killing bacteria and act on neurotransmitters in the brain."
I don't know about that statement because in his study he states:
Ceftriaxone upregulates the expression of glutamate transporters on the astroglia of rat brains with neuroprotective effects30--presumably because of reduced extracellular glutamate, a potentially neurotoxic neurotransmitter. This could explain short-duration improvement in that continued exposure to ceftriaxone would be required for sustained upregulation of the glutamate transporter.
Another explanation for the observed relapse is that the course of ceftriaxone may have killed some borrelia, but it exerted little effect on other organisms in sequestered sites.31,32 There is one North American report of persistent B burgdorferi by culture after antibiotic therapy,33 and there are several such European cases.34-38
Dr. Fallon is just voicing a couple of theories. The article you quoted appears to have left out the second theory Dr. Fallon postulated. I did not find anywhere in the study where he said he didn't believe live bacteria persisted in patients. That statement is opposite what he put in his study. I'll have to reread the study to make sure I didn't miss it, but it's obvious from what I cut/pasted above that he believes it's possible that antibiotics may not have reached Bb's that were secluded elsewhere.
Posted by Soleilpie (Member # 8481) on :
Bettyg,
That comment left by that reader was right on! I mean it states right in the study that the subjects had to be CDC positive for IgG and had to have been treated with at least 3 weeks of IV Ceftriaxone.
It would be a contradiction for Fallon to make such a statement when his research subjects were positive for Lyme after at least 3 weeks of treatment. I guess someone could say that being IgG positive doesn't necessarily mean current infection. But it also doesn't mean it's necessarily past infection either.
But you and I both know that if you're positive for Lyme AND have clinical signs of Lyme, then you probably have spirochetes swimming around. And since the research subjects had to exhibit subjective and objective memory impairment (though many exhibited other Lyme symptoms as well, but this study mainly concentrated its efforts on memory and cognitive domains), I'd have to say they clearly showed clinical symptoms as well as laboratory confirmation.
Posted by lorima (Member # 11925) on :
Sorry to say this, but: the patients weren't proven to be "currently infected".
The only way to do that would be to culture out the bacteria, or maybe by PCR show that the Bb DNA is there (although some have said that the PCR remains positive for a while after live spirochetes have all been killed, presumably due to dead spirochetal DNA still being present).
Also sorry to say, the study is disappointing. Just rehashes that if 3 weeks of IV abx didn't "cure", neither will 1o weeks. And that the IVs themselves are risky, so not the first choice for treatment.
That's totally unsurprising, and it doesn't help us out. We all know it (often? usually?) takes longer than 10 weeks, and probably addition of cyst-busters, etc. And then, probably re-treatment anytime symptoms reappear.
For that reason I favor high-dose, long-term orals whenever possible. If IV was saved as a last resort, we wouldn't get so much resistance to long-term treatment (or at least not the reasonable resistance, just the political kind ;-)
I'm not saying people shouldn't be able to get IV! Just that it shouldn't be considered necessarily better than orals. For heart block or seizures, starting with IV makes sense to get it in there fast, but after a few days orals can get in there too.
Just my opinion, I'm a scientist but not an MD.
Posted by nan (Member # 63) on :
This is EXACTLY why we need research and production of gold standard testing. Without that, neither side can conclusively say one way or the other.
Not sure whether a test can be developed that would actually show ongoing infection. Wonder if that would be possible.
Posted by aklnwlf (Member # 5960) on :
Yeah TC!! Thanks for getting us this great news!
Posted by Aniek (Member # 5374) on :
The most important part of the study is he states the need for more research.
It's also important to note the study showed continued improvement in reduction of pain.
Posted by 5dana8 (Member # 7935) on :
I was so excited to hear some good news & waited.
Now I am more depressed than ever ~ I am sorry to be such a downer but that Dr. F would even elude to the fact that it isn't a chronic on going infection is devastating to me. Why would he bother to even use CDC positive patients like the above poster mentioned?
How will his statement effect patient care with long term abx if it sounds to me like he's saying it's a neuro responce rather than a chronic infection.
What can be done now? I am so devastated, I can't stop thinking about it.
Is there no way of someone contacting him to see if his quote was taken out of context & could have been mis-quoted?
Tinnie where are you? What do you think?
Posted by LocalMan (Member # 11648) on :
I too would like to know...I seem to be seeing the cup as half-empty, and being poured at my feet by the medical establishement... LM
Posted by bettyg (Member # 6147) on :
you asked about contacting brian fallon!
read the above again; it shows HIS EMAIL ADDRESS THERE IN THE STUDY!
I sent him a congrats note on FINALLY gtting this published; how about you? Posted by bystander (Member # 11893) on :
Fallon said, however, that even if -- for the sake of argument -- he agreed to yield on the issue of chronic infection, his study and others still show that people with Lyme symptoms get better if they take antibiotics.
"We should be asking: 'Who are these patients? Who could benefit?'" Fallon said. "Just saying chronic Lyme disease doesn't exist doesn't help anyone. We know we have these patients with these symptoms. We need more research to find out how to help them.''
Posted by Soleilpie (Member # 8481) on :
You guys the data wasn't bad. The positive thing is that there was cognitive improvement but it wasn't sustained after they stopped antibiotics for 14 weeks. We all know that that's what happens with many patients. Now, if the research subjects were on it longer, then maybe it would be sustained.
That data did show that for current pain and physical functioning the improvement was sustained to week 24. Fallon said that "Ceftriaxone may have both short- and long-term benefits for these symptoms.
Dr. Fallon set narrow requirements for his research subject, like having a CDC positive IgG, in order to "enhance diagnostic confidence." He didn't want anyone to find any cracks in his data.
I think it was Dr. Burrascano that basically said that long term antibiotics many not be the best treatment, but it's the best we've got right now. I totally agree.
Fallon's research shows exactly why we need HR 741 and S 1708 to be passed. We need to find better treatment. One that actually cures and not in 2-3 years but days. We also need to find better testing.
Dr.Fallon did say that one limitation of his study was the small sample size.
Posted by Soleilpie (Member # 8481) on :
Bystander
That was a great article. It's exactly how I see the data. Thanks for posting it.
Posted by 5dana8 (Member # 7935) on :
thankyou bystander
from the bottom of my heart for posting that article Posted by Tincup (Member # 5829) on :
Right! Dr. Fallon's study didn't give us ALL of the answers to these complex questions. It couldn't possibly do that... if it cost $5 million or $25 million. It was impossible to do that in one study.
What it did though was VITAL to our cause.
It PROVED what we and our LLMD's have been saying for years... in a government funded study, using only the most stringent duck tests and rules... so they can't say their normal blah blah blah bull... WE WON!
We are RIGHT!!!
Dr. Falllon's study proved beyond a doubt that long term antibiotic treatment DOES help many symptoms and without antibiotics we go downhill.
Can or should EVERYONE use the same time/length of IV Rocephin in that controlled study? No.
Can we say exactly why it helps? No.
The study was ONLY designed to see if extending treatment past 30 days would help. It did.
Even though we all KNOW that already... we needed that documented scientifically and so the ducks couldn't come back in our face with their tired old garbage.
NOW we have a leg to stand on.
PLUS.. it backed up what the duck studies did but the ducks didn't share. Long term treatment DOES help.
Period.
Not to mention... HELLO ATTORNEY GENERAL... do we smell even MORE rotten eggs in that antitrust mess? Now he has PROOF that they are full of it... and they can't worm their way out of it.
The question is now.. how far down in the swamp can we bury the idiot ducks.. and do we REALLY have to give the poor alligators indigestion any more when we dispose of them in the pit?
Remember.. like it or not.. we must fight this fight in the scientific arena and medical literature.. NOT behind the Ya'll Come Back Saloon. Although, I WOULD like to grab a few ducks by their ears and drag them out back and make them read the facts.
And to expand on MY feelings about this study and great effort... I wrote this little note earlier about Dr. Fallon and about what is involved here.
Maybe this will explain more to those who feel this isn't enough and not what THEY wanted it to say.
``````````````````````````````````````````````
To me, Dr. Brian Fallon is the "bridge over troubled waters".
As we all know, there are two very different opinions in regards to Lyme disease diagnosis and treatment. Those who have been wounded, who have been sucked into this nightmare through no fault of their own, can't keep sitting in the corner with their backs against the wall ready to fire at anyone who approaches them with different thoughts, especially IF we ever expect to move forward or eventually end this war.
At some point we must give and take (compromise) and Dr. Fallon is one of a very few who are out there trying to bring the two sides together. I give him a big thumb's up for his efforts.
Personally I wouldn't want his job nor could I do it.... as I am still too angry to even THINK about crawling ONE step toward the other side after what I have seen others go through over the years.
That is why we all NEED Dr. Fallon doing what he can to be that vital link. He has to play both sides of the fence.... or we are stuck with the alternatives... which would be for him to join one side only and spend his efforts firing at the other side... or he could walk away and leave us all high and dry.
I really wouldn't blame him if he did as I am sure he doesn't need all this stress.
My true hope through this painful bridging process is that we don't suffer any more casualties before we can come together to make positive changes for everyone.
And that is all I have to say about that!
Posted by Tincup (Member # 5829) on :
HA! You KNEW that wasn't all I had to say about that!
Who did I think I was fooling?
One more point.
I really really wish that Dr. Fallon's study results said something like this...
"The idiot ducks were wrong and they stink and we were right and they caused horrible harm to many and they should have listened to us and they are nasty pigs and they all should rot."
But we will just have to accept Dr. Fallon's version of the same thing... and RUN with it!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tincup: I really really wish that Dr. Fallon's study results said something like this...
"The idiot ducks were wrong and they stink and we were right and they caused horrible harm to many and they should have listened to us and they are nasty pigs and they all should rot."
Sounds very good to ME!!!! Actually, that IS what he's saying "between the lines!!" Posted by Ann-OH (Member # 2020) on :
Did anyone get all of Halperin's comments? Or maybe it was posted and I missed it.
In any case, I would love to see it.
Thanks, Ann - OH
Posted by Anneke (Member # 7939) on :
One of the bottom lines to me is the following:
We now have a study which proves that longerterm antibiotics improve all the primary symptoms of Lyme. The study also illuminated what many of us have experienced - we relapse when treatment is stopped.
OK - so the great news is that the treatment works to greatly improve the quality of life of thse with chronic Lyme. A big percentage from what we know from our support groups and drs are even cured.
The point now is: if these drugs greatly improve the quality of a patient's life, that patient should have the right to receive that treatment with all the risks in mind!!
Doctor's would NEVER stop giving AIDS patients antiretrovirals because they are not effective in terms of a cure!!
Anneke
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Anneke:
The point now is: if these drugs greatly improve the quality of a patient's life, that patient should have the right to receive that treatment with all the risks in mind!!
Doctor's would NEVER stop giving AIDS patients antiretrovirals because they are not effective in terms of a cure!!
A big "hear, hear"!! Why are we second class citizens? Posted by bettyg (Member # 6147) on :
ditto what tutu said; why are we considered 2nd CLASS CITIZENS?
WHY DO ANIMALS GET BETTER/QUICKER SERVICE THAN WE DO? hog wash!
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Please tell me.![[Frown]](frown.gif)
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pick me pick me pick me OR![[group hug]](graemlins/grouphug.gif)
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