LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. F at Columbia University Research Question

 - UBBFriend: Email this page to someone!    
Author Topic: Dr. F at Columbia University Research Question
tdtid
Frequent Contributor (1K+ posts)
Member # 10276

Icon 1 posted      Profile for tdtid     Send New Private Message       Edit/Delete Post   Reply With Quote 
Apparently Dr. F (who's on our side, I thought) published a report on October 10th, 2007 indicating that IV ABX was NOT effective against
Lyme Disease.


The details are: Fallon BA, Keilp JG, Corbera KM, et al. A randomized,
placebo-controlled trial of repeated IV antibiotic therapy for Lyme
encephalopathy. Neurology. 2007 Oct 10; [Epub ahead of print].

Still working on insurance appeal and wondering if anyone has any information to combat this. Thanks for any help.

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-


The research team says short term IV of a single drug is not enough. Nothing new there. LLMDs have said that for years.

But it had to be shown in some fancy study so that they can go on now to more complex studies.

Sad, but true, that research comes with many constraints.

In the eyes of most doctors, 10 weeks is long-term. In the eyes of borrelia researchers, 10 weeks is a minor irritation for the spirochetes.

And, heaven help them if they were to have considered the cyst form of lyme and actually treated that, too.


Combination - rotation - treatment for longer courses have been what the LLMDs have said all along.

Also, note that coinfections were not considered here. Or, gasp, liver protection or probiotics.


I don't think the funding was available for the best research project(s).

It had to be short course of a single drug (because that is apparently all the powers that be can wrap their heads around) or nothing at all, most likely.


Bottom line for the study: " . . .Treatment strategies that result in sustained cognitive improvement are needed."


But here's how I see the the REAL bottom line: Research studies simply will never be logical - or complex - enough to consider complete treatment of the tick-borne disease mix.


And, the REAL bottom line, in practical terms, is that this study will be used by less than educated doctors and insurance companies to deny treatment that, if combined, rotated, or used long enough for particular patients, could changes lives for the better.

Most regular doctors and the IDSA will not even consider anything about this beyond the headline. And that is very sad.


=======================================


www.neurology.org/cgi/content/abstract/01.WNL.0000284604.61160.2dv1

Received February 12, 2006
Accepted June 26, 2007


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

. . .

Excerpts:


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.


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good info Keebler.

I think Dr. F. is supposed to be impartial. Not on anyone's side. This would give him credibility with both sides.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

Oh, yes. Dr. F is impartial. I did not mean to say he is not.

If that comes across that way, please let me know what and I will change my words. I am pretty foggy and not sure if my words come out right.

I did not mean to criticize the research team but express sadness that a more complex study was not able to be funded.


It's just that the way studies are designed have to be so simple. Had they been able to do a 6-month study, that might have really shown more.


What this study says is that better treatment methods are needed. True.

But, I sure wish the collected experiences of the LLMDs would count for something. Devising just the right research study may actually be impossible as combination and rotation is a vital key to success and lyme is never just lyme - it's many forms.


And I thank Dr. F and the entire team for their work on this. Mostly, I thank the patients who had to settle for treatment that most LLMDs already knew would not be enough.

But, now they have the research project that says so. Someone has to do the studies.

I only hope that those who FUND the studies will look at the big picture.

[edited to add: and that bigger picture would also include the importance of complementary support measures - and maybe even looking totally outside of the box to treatment such as with the Bionic 880 as its being used in Germany.]


==================


http://tinyurl.com/2dmvs2


From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )


CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpt:


" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


- full article at link.


==================


www.ilads.org/goldings.html


CONTROVERSIES IN NEUROBORRELIOSIS

Audrey Stein Goldings, M.D. - Updated October, 2002

excerpt:


`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``


- Full 2-page article at link above


-

[ 08. September 2008, 05:13 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was responding to this:

"Apparently Dr. F (who's on our side, I thought)"

I think it is a common thought and I understand why but I've read things that indicate that he is supposed to be an impartial researcher and that is what we want so we can find out the truth.

Nothing wrong with what anyone said here in my view.

You made some very good points Keebler.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cathy wrote:
Still working on insurance appeal and wondering if anyone has any information to combat this.

Someone posted this recently but unfortunately I can't find the thread. I re-posting the page in case you haven't seen it.
Public Law 107-116

Look for the sample letter to the insurance company.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't want to divert the post subject but quickly, I think the best way to find out if you might have lyme disease is for you to be evaluated by a top notch LLMD (Lyme Literate Medical Doctor).

I don't think Dr. F. is an LLMD but I could be wrong.

If you don't have one, go to the seeking doctors section of this site and put your location in the subject line. Hopefully someone can help you find someone who can meet your needs.

Terry

[ 12. September 2008, 05:35 PM: Message edited by: Jenifer ]

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
cathy,

do you have a WRITTEN DENIAL LETTER? if yes, please email me at home; i have an idea for you. thanks! [group hug] [kiss]

IP: Logged | Report this post to a Moderator
tdtid
Frequent Contributor (1K+ posts)
Member # 10276

Icon 1 posted      Profile for tdtid     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for all the information here.

Betty their Denial was about 21 pages worth. That's a lot of pages to type into an email by hand.

AFter they denialed, my husband requested all grounds on what they denied my case on as well as the doctor who was overseeing this case. Obviously an IDSA that was hard core by their rules.

My husband has rebuttals for most of it, but got stuck on how to respond about this Dr. F situation since I guess we have to dispute each one of the reasons they are denying.

Just need solid facts on how to take their Dr. F study and put a positive spin on it in OUR favor.

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
cathy, be sure to read the pm i just sent you about the above ok! [Wink]
IP: Logged | Report this post to a Moderator
tdtid
Frequent Contributor (1K+ posts)
Member # 10276

Icon 1 posted      Profile for tdtid     Send New Private Message       Edit/Delete Post   Reply With Quote 
Got it. Thanks Betty.

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.