5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
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
Posts: 212 | From Eastern CA | Registered: Apr 2007
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bettyg
Unregistered
posted
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?
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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.''
Posts: 204 | From ma | Registered: May 2007
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posted
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.
-------------------- 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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That was a great article. It's exactly how I see the data. Thanks for posting it.
-------------------- 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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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
thankyou bystander
from the bottom of my heart for posting that article
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
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!!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Did anyone get all of Halperin's comments? Or maybe it was posted and I missed it.
posted
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
Posts: 364 | From California | Registered: Sep 2005
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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?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
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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