Topic: Dr. Baker, former NIH, sides w/PALLONE ...HOLD LYME BILL + all replies to date!
bettyg
Unregistered
posted
...
NOTE: ONLINE ENTRIES ARE 1,000 CHARACTERS TOTAL! DO WORD COUNTS, AND PUT IN YOUR MS WORD or whatever you use, and SAVE ALL so you don't lose it! ***********************************
New Action
Necessary to counteract Asbury Park Press Letter from Phil Baker applauding Congressman Frank Pallone for siding with IDSA
The Asbury Park Press printed a letter 5-21 (click link above for letter) from Dr. Phillip Baker, former NIH Program officer for Lyme and current ALDF Director, in which he purports to feel sorry for Lyme patients and applauds Congressman Pallone's decision to allow the IDSA control over the fate of the Lyme bill.
No where does he mention the IDSA conflicts of interest or that he gave out most of the Lyme research monies to IDSA researchers and now is being paid to direct their organization, American Lyme Disease Foundation, a government mouthpiece whose advisory board consist of many IDSA guidelines panelists
/////////////////////////////////////////
copying this here for us to read, and easier on my low vision eyesight....
wow, it took 2 hrs. to copy this here and another 2 hr. for me to compose my 6 posts. boy was that work! uffda!
MOST CURRENT POST IS AT TOP; oldest posts are at bottom of this post!
Pallone right to wait for proof
Having worked as a program officer on Lyme disease for the National Institutes of Health for 13 years, I have great respect and empathy for patients who seek the truth from members of the medical and research communities. ("Action sought on Lyme disease bill," May 8.)
However, much of the controversy about the treatment of Lyme disease stems from a small minority of physicians who claim their patients suffer from "chronic Lyme disease."
No direct evidence proves this condition is caused by a persistent infection of Borrelia burgdorferi.
This small minority of physicians mistakenly advocates prolonged antibiotic therapy of six months or more, which can do great harm and has been blamed for at least one death.
The NIH has spent more than $ 8 million on four different placebo-controlled clinical trials to examine the efficacy of prolonged antibiotic therapy for treating this condition. None of these studies showed such treatment is beneficial.
The decision by Rep. Frank Pallone Jr., D-N.J., as chairman of the House Energy and Commerce Subcommittee on Health, to delay consideration of HR-741 until an Infectious Diseases Society of America review has been completed; is both prudent and responsible.
The outcome of the review is likely to have great bearing on whether such legislation is necessary and, if so, what form it should take.
NIH-supported studies have shown patients with this condition experience significant pain and require appropriate medical treatment.
However, because there is no evidence their symptoms are caused by a persistent Borrelia burgdorferi infection, antibiotic therapy is not justified.
It is time to consider other possibilities and treatment options.
Pallone's decision is in the best interest of appropriate patient safety and care.
Phillip J. Baker EXECUTIVE DIRECTOR AMERICAN LYME DISEASE FOUNDATION LYME, CONN. /////////////////////
BettyG wrote:
PART 1 OF 7
Baker states, "I have great respect and empathy for patients who seek the truth from members of the medical and research communities".
Funny, but to this CHRONIC LYME patient of 38 years, 34 years MISDIAGNOSED by 40 - 50 DOCTORS, I didn't see anything in your letter indicating that to us!
It's time the IDSA doctors, CDC, NIH, etc. get their heads out of the sand, and FINALLY deal with this controversy! We CHRONIC LYME PATIENTS ARE NOT GOING AWAY!
Our 2 lyme bills, HR 741 and S 1708, have been in congress TEN LONG YEARS with NO ACTION hoping it could be swept under the rug, and we CHRONIC LYME patients with it! No way Jose!
IDSA, infectious drs., do NOT believe in CHRONIC LYME, CL, patients; and UNDERTREAT for LESS than 30 days; and you are CURED! HOG WASH !! Wake up IDSA; get real. **************************** part 2 of 7
Many of us are CHRONIC since you didn't do your jobs of "DOING NO HARM" literally; not LISTENING to the patients describing all their systems; getting them on 3 months of antibiotics at STRONG enough dosages to work on killing off the spirochetes that have entered patient's body, and starting to invade their body!
We CL patients believe we should be symptom free before stopping our antibiotic pills. The IDSA gives from ONE pill up to 3 weeks max. A spirochetes cycle is every 28 days it multiplies in the body. So 3 weeks will NOT kill off ALL the spirochete in the body!! SHAME SHAME!
Thanks to ALL the CHRONIC LYME patients who have supplied MEDICAL/SCIENTIFIC studies below: Itsyb, shazdancer, lymebill741, cave76, and all patients and family members for speaking up for yourselves and loved ones! EXCELLENT evidence. *************************
Part 3 of 7
Too bad the press and IDSA NEVER did their homework and included what YOU found below. They just rejected it dealing with IDSA items only! SHAME SHAME!
Baker states, "Pallone's decision is in the best interest of appropriate patient safety and care." HOG WASH !
It is in the best interest of C.L. patients to be: * promptly diagnosed based upon their symptoms and including IF a tick is embedded or they have the BULLS-EYE RASH, which less than 50% get!
* be given at least 3 month of antibiotics and strong enough dosages to kill off the spirochetes;
* their blood be tested for Lyme using their Western Blot IGM & IGG; or Co-infection testing for: Bartonella, Babsiosa, Erlichia, and others;
by 1 of 5 top LYME DIAGNOSTIC labs in USA:
1. Igenex Labs, California; 2. MD Labs, New Jersey; 3. Fry Labs, Arizona; 4. Stoneybrooke, New York City 5. Central Florida Labs
************* Part 4 of 7
Frank Pallone and his health SUB-committee members should NOT have met with IDSA leaders, their LAWYERS, and others, on May 2, 2008, ONE day after learning Conn. Attorney General Dick Blumenthal's anti-trust claim against IDSA were found to be in the wrong:
CONFLICTS OF INTEREST GALORE: GRANTS, PATIENTS, being on 2 different committees coming up with the SAME LANGUAGE on Lyme disease guidelines, etc..
The Pallone had the audacity to sit on what they decided May 2; 5 whole days before the SCHEDULE PEACEFUL LYME PROTEST May 7, 2008 !!
Do you know how HIS actions of Chair of health sub-committee affected the 100 Lyme patients/family who came that day in wheelchairs and even those receiving IV antibiotics?
It was NOT in their SAFETY AND CARE; but since we C.L. patients have been getting the shaft for decades; it was detrimental, and many have been bed bound for many days trying to regain their strength again.
******************************* Part 5 of 7
They were there in spite of anything to FIGHT for their rights as an American citizen who only wants this .... EQUAL TREATMENT just like those with CANCER, AIDS/HIV, and the many other diseases that health insurances WILL PAY and reimburse! Each of you would want the SAME thing also!
Majority of us C.L. patients have to PAY OUT OF POCKET for: our appointments, treatments, x-rays, blood labs, special testings, hospital visits, IV antibiotics, etc.
Our health insurance agencies FIGHT us galore on reimbursing us when we have GOOD policies that we pay dearly for per month! They use CDC guidelines based on IDSA guidelines. HOG WASH again!
Now let's not forget all those who have been fired from their jobs since we are sick so often; lose our health insurance/all benefits; spouses divorce us; some lose their kids; their family members disown them; they lose their homes, go bankrupt, and end up HOMELESS.
*********** Part 6 of 6....oops; SIX pages not 7 !!
That includes many VETERANS PAST/PRESENT who have Lyme disease and can not get treatment by ILADS, our chronic Lyme literate doctors; only IDSA military Dr's. who treat UNDER 30 DAYS and don't believe in C.L.!! They have FOUGHT WARS for our freedoms that we Americans take for granted, and here they end up HOMELESS since they don't receive the correct LLMD treatment for LYME/CO-INFECTIONS of tick-borne diseases! SHAME SHAME BIG TIME!
I'm very upset Congress members are bought off by medical communities with LOBBYIST money! All our money goes to PAY OUT OF POCKET for our C.L. treatments!! Where is the justice in that? CONFLICTS OF INTEREST BIG TIME!
BettyG, Iowa activist 5/23/2008 3:04:01 AM recommend ..1..
************************** pmervine wrote:
Is NJ Congressman Pallone right to �wait for proof� before releasing legislation to increase funding for Lyme disease research? It depends who his constituents are. Are his constituents the 12 authors of the controversial guidelines on diagnosis and treatment
5-23-08, 2.24.29 AM ***************** magaro wrote:
If the IDSA was in the right here why would they agree to form a new panel.
The issue that Pallone tabled really has nothing to do with the IDSA guidelines.
Whether or not it is chronic lyme or post lyme symptoms, the government should provide for researching the issue to find out why this happens to so many people.
CDC agrees 90% of lyme cases are not reported and testing is extremely inaccurate. That needs research.
Pallone tabled this waiting on the IDSA to revise their guidelines, but there is no reason to hold off research into the testing, prevention, and treatment.
The fact that the Asbury Park Press decided to take a position on this issue with the side that is completely and obvoiusly wrong is appaling.
I will no longer buy your newspaper.
Watch "Under our Skin" and then realize how horrible what you have done is. 5/22/2008 10:48:08 PM
**************************
daphnea wrote:
1. �Dr. Stricker can't devise a definition for chronic Lyme disease that enables one to distinguish it from other non-infectious conditions with similar symptoms (e.g., chronic fatigue syndrome, and fibromyalgia).�
Mr. LD:
IDSA cannot devise a definition for chronic Lyme disease that enables one to distinguish it from
�vague subjective symptoms � since they say chronic, treatment resistent, relapsing, and/or persistent infection does not exist, and ergo, there is no chronic lyme disease.
Yet, earlier studies, plus a multitude more, some from IDSA guideline writers themselves, support the hypothesis that there is treatment resistence, there is relapse, and that spirochetes continue to exist within the body after treatment (that is the definition of infection, not the definition of symptomology). 5/22/2008 7:57:56 PM
******************** daphnea wrote:
2. � He has no direct evidence that it is due to a persistent Borrelia burgdorferi infection in the patients he proposes to treat.
� Depends on how you define direct evidence.
If you are saying that verbal comments are not acceptable, then the next time a patient comes to see a dr., they can just say �Guess!!�.
Even pain can be measured if you have developed your own observational abilities...look at the pallor, look at the grimaces (I would go on except for the need to shorten this).
In other words, listen and look at the patient along with other measures. Or, if you need something with numbers, give them a rating scale to fill out. 5/22/2008 7:47:28 PM
************************ daphnea wrote:
3. �How then can he justify any given therapeutic approach, let alone prolonged antibiotic therapy?�
Most medical drs. are familiar with off label use, and treating clinically.
It is appropriate and used in many infectious diseases. Just take a look at fungal infections.
They have worse testing than borelliosis, and less is known about anti-fungals. Often, it is a shot in the dark.
Lyme is the only disease where there is political intervention in the rights of the individual patient-doctor relationship.
Lyme is the only disease where political shenanigans supercede science.
Lyme is the only disease where political stonewalling prohibits funding of research of tick borne diseases. 5/22/2008 7:46:43 PM
************************** daphnea wrote:
4. �Where is the evidence, from the results of published placebo-controlled clinical trials that such therapy is beneficial ?
I challenge Dr. Stricker and his followers to get busy, and address these issues.
�There is no evidence because H.R. 741 has been locked up due to political and lobby pressure.
I challenge Rep. Pallone, LD and his followers to get busy and address their real reason for stonewalling H.R. 741, which is allowing patient and clinician input that disagrees, both in science and experientially, with the IDSA inflexibility, in my opinion.
There is much information that IDSA could gain, from the treatment and experience of complex of tick borne diseases, rather than discrete and isolated pathogens.
I challenge you to find the real reason IDSA does not accept, and fights against, this same input that
******************* patwynn2001 wrote:
Phillip Baker's American Lyme Disease Association is the only Lyme organization that supports the IDSA's guidelines on Lyme treatment.
I know of no Lyme patients who have been helped by the ALDA or the IDSA.
On the contrary, the thousands who are suffering from long-term infection ask for and receive help from all the patient advocacy groups that have support the Lyme bill and doctors from the International Lyme and Associated Diseases Society.
Mr. Phillips may quote his studies, but having been a patient advocate for 10 years, I can attest to hundreds of cases who have been made well by long-term antibiotic treatment.
The real question, however, is why Phillips, the ALDF, and IDSA oppose a bill that would fund more Lyme disease research and education. What do they have to fear?
I suggest we look for an answer in the findings of the Connecticut Attorney-General's investigation of the IDSA. 5/22/2008 6:19:32 PM
************************** larkspur11 wrote:
I am appalled that such an article would be published supporting an organization that was recently found guilty of Antitrust violations and conflicts of interest..
Yes, people with Lyme disease are angry.
Individuals have lost decades of their lives to this illness, their careers, in some cases their families and homes.
Unfortunately, Lyme disease is not going away because it is now in endemic proportions.
It is only a matter of time before the truth about the conflicts surrounding Lyme disease are well known. Documentaries are being made, respected journalists are coming forward with books. And people are continuing to get sick.
If long term antibiotics are not the answer, than why in the world would anyone try to halt or prevent research to find the answer?
The response of the mainstream medical community to the rise in Lyme disease in the last 30+ years will be rememberered as one of the great scientific shames of our era. 5/22/2008 6:16:32 PM
************************ itsyb wrote:
5. Do all of us disbelieve that a post-infectious syndrome is impossible with this disease? Certainly not!
Do all of us believe that you cannot be left with arthritis if there is joint damage? No!
However, many people who say that they are suffering from chronic BB infection (and their doctors) have more than fatigue, fibro, and mild confusion.
Many continue, after 'treatment' to have severe neuropathy, joint pain and degeneritive joint and disc problems, sleep disorders, extreme headaches and stiff necks, eyesight problems, and psychological disturbances just to name a few symptoms.
If treatment even helps some of these people, it shouldn't be held back.
If doctors choose to treat multiple times or long term, they shouldn't be subjected to a witchhunt.
And none of us should be attacking, we should be debating and presenting science. 5/22/2008 5:02:19 PM
************************ itsyb wrote:
4. The controlled studies we do have use the same drugs over and over again. There is plenty of evidence, only a sample listed at the beginnning of this thread, of persistence.
That is established, even if it is ignored, it is the reality.
Do we know what antibiotic, or even HAVE an antibiotic, that will be effective either in long or short term usage 100% of the time? No.
Thus, the need for more research. Even the IDSA agrees that this country is sorely lacking new antibiotics! 5/22/2008 5:01:25 PM
************************* itsyb wrote:
1. Do I need to post more even studies for Lymedoc, or will reposting the persisting infections by culture and PCR be enough since he doesn't have time to scroll back to the beginning?
2. DRs Stricker and Cameron, thank you for chiming in as you have, as you have kept your comments professional and non-combative.
3. Joe, thank you. This is NOT a proper forum, folks, to attack the people in question with "you are the enemy" or "shame on you".
Problems with the Lyme community as it stands today stem directly from the personalized attacks against individuals or groups, the threats, the hysteria that abounds.
As Drs Stricker and Cameron are obviously aware, one needs to make a point without resorting to such nonsense.
I didn't see Dr, Stricker personally attack Lymedoc in return for him picking on Dr. Stricker's comments, did you?
Allow that to be a template, please. 5/22/2008
************************* docjen01 wrote:
We should fall on our knees in thanks that Dr. Baker was not at NIH managing watershed research by docs like Semmelweis or Marshall.
If he were, I'm sure he would argue "no evidence that hand washing is connected to the risk of developing child bed fever" or "no scientific evidence linking h. pylori and peptic ulcers."
Dr. Baker is a very loyal - and unquestioning - member of the House of Medicine.
It is fortunate for him that he has had the opportunity to stand on the backs of giants such as Semmelweis who had the *courage* to question organized medicine.
Like Dr. Baker, I was a program officer for the Federal Government.
However, unlike Dr. Baker, I had the moral and ethical fortitude to leave the area in which I worked when I left the government.
The siren call of "feathering your nest" by wielding federal moneys, and then cashing in on your connections and influence is indeed hard to resist. It is very telling of Dr. Baker's character that he did not. 5/22/2008 4:51:02 PM
Rep Pallone is, in effect, saying no to educating parents and teachers about this illness, too many of whom are ignorant of this disease despite NJ having the 3rd highest infection rate in the nation.
No to research, so we can understand this disease better, rather than labeling it a "Post Lyme syndrome" that you're stuck dealing with for the rest of your life, even if you're only 5 years old.
No to hearing the voices of those afftected by Lyme, so that doctors can get a better understanding of what those patients are going through, and LEARN through those experiences.
According to the Blumenthal settlement, the IDSA has one year to rewrite their guidelines.
That may not seem a long time to wait if you or your child do not have Lyme Disease, but for every parent who's child is in a wheel chair, or who's legs are too tired to walk to their bed at night, or who feels sharp shooting pains like being stung by 100 bees, it is WAY to long. 5/22/2008 3:59:43 PM
**************** ckasper wrote:
I am shocked and appalled.
Having suffered with Lyme for nearly 3 years, responding positively to antibiotic treatments-and very poorly when coming off, I can not believe the medical community does not have more hard scientific data.
I am and have been very ill. I am fortunate that I did have a "bullseye" rash when I first contracted Lyme in 2005.
I am unfortunate, that due to lack of accurate information, I was not treated long enough.
Long term antibiotic therapy has been the only treatment to reduce my symptoms effectively.
Please support the Lyme bill. It is for research towards a better understanding of Lyme, and potentially a cure.
As someone who is sick with this and who has responded to antibiotic treatment, I am certain that medical professionals who stand in opposition to Lyme treatment and research are grossly incorrect.
Chris Kasper, NYC 5/22/2008 3:12:54 PM
****************************** joeham wrote:
Replying to loubach:
Dr. Baker,
You are an enemy to public health, worse than the ticks that carry Lyme and other tick-borne diseases.
Lou, your comment is so profound, so full of science and logic that I'm sure you have won over all 800+ members of IDSA.
"We have met the enemy and he is us." -- Pogo 5/22/2008 2:23:11 PM
***************************** rstricker wrote:
In response to "Lymedoc", at the IDSA Annual Meeting in 2006 and the Columbia/LDA Annual Meeting in 2007, I presented the evidence that supports persistent infection and longer treatment in chronic Lyme disease patients, as outlined in the ILADS guidelines and numerous peer-reviewed articles.
Labels like "fibromyalgia" and "chronic fatigue syndrome" do not define a disease.
These symptoms in conjunction with positive Lyme testing and immune markers define persistent tick-borne infection that requires further treatment, not the neglect that Dr. Baker recommends. RS 5/22/2008
********************** loubach wrote:
Dr. Baker,
You are an enemy to public health, worse than the ticks that carry Lyme and other tick-borne diseases.
5/22/2008 11:09:57 AM
**************************** lou00 wrote:
If NIH did a better job with tickborne diseases, we would not need new research money.
Instead, they use their financial clout to support a fraudulent view of a serious disease, and help to promote people like Mark Klempner, one of whose flawed studies is constantly used to show that antibiotics do not help people with chronic lyme.
Sometimes I wonder if we are still in the dark ages.
Are all the federal health agencies are working in opposition to patient/public health interests, and if these are not typical, why have they allowed such outrageous behavior in some employees?
5/22/2008 10:32:15 AM
************************** lou00 wrote:
It was not surprising that Dr. Baker moved effortlessly from NIH, where he did his best to sweep lyme under the carpet, to the ALDF, which was set up expressly for that purpose.
The ALDF is a front organization set up to counter a legitimate lyme foundation which has patient interests at heart and works for better research, diagnosis and treatment.
This NIH response is apparently more than an individual position as Baker followed McSweegan in that job.
The latter was removed from the job because of his poor performance and has ever since been stalking lyme patients, reading their internet forums, plastering letters to the editor all over the country's newspapers.
This was because he was given no work to do after this debacle, meanwhile drawing a salary, so he had plenty of time to do this, and getting paid by the taxpayers for doing it. ----------------------------------- 5/22/2008 10:30:42 AM
********************** ectlymevoice wrote:
Pallone should schedule this bill for a hearing, and see how much support there really is.
If it is so certain that this "small minority" is off-base and of so little consequence, the bill won't even pass. Right?
Have the guts to bring the hearing.
5/22/2008 10:03:54 AM
************************** ectlymevoice wrote:
It is unconscionable that a man of Dr. Baker's position should take this stand.
His letter shows that he has little knowledge of the pertinent science which is available, and that he has not taken the time to read the legislation.
The legislation asks for funding for better testing of tick-borne diseases (current testing is about 65% accurate), as well as funding for research regarding tick-borne disease, education, and prevention.
Why would anyone oppose funding for research, education, and prevention of DISEASE?
Dr. Baker has been endowed with a responsibility to Lyme Disease patients; he is not holding up his end of the bargain.
Directly from the American Lyme Disease Foundation's own website,
"Dedicated to the prevention, diagnosis, and treatment, of Lyme disease and other tick-borne infections",
Dr. Baker obviously does not have this sentiment at heart, and his own organization should be gravely concerned.
*********************** Lymedoc wrote:
Replying to rstricker:
Dr. Stricker can't devise a definition for chronic Lyme disease that enables one to distinguish it from other non-infectious conditions with similar symptoms (e.g., chronic fatigue syndrome, and fibromyalgia).
He has no direct evidence that it is due to a persistent Borrelia burgdorferi infection in the patients he proposes to treat.
How then can he justify any given therapeutic approach, let alone prolonged antibiotic therapy?
Where is the evidence, from the results of published placebo-controlled clinical trials that such therapy is beneficial ?
I challenge Dr. Stricker and his followers to get busy, and address these issues.
5/22/2008 9:41:46 AM
************************* mcpepper25 wrote:
Congressman Pallone should not have used the IDSA guidlines as an excuse to keep bill, HR741 in committee.
This bill is not just a "Lyme" bill.
This bill will allocate funds for research for all diseases contracted by a tick bite, many which cause fatalities every year.
Tick- borne diseases are epidemic in this country and the federal government needs to recognize this serious health problem .
Education, research, new testing and treatment techniques are needed. This bill will allocate funding for this.
Mr. Baker and Congressman Pallone should not be using the treatment debate of Lyme Disease as an excuse to hold up this bill. Congress needs to pass this bill now.
5/22/2008 7:59:42 AM
********************** familyconnection wrote:
It's very slick of both Cong. Pallone and Dr. Baker to think that denial of chronic Lyme means that there should be NO RESEARCH FUNDS to seek better diagnosis and cure for Lyme.
It is beyond belief that they cite an incredibly narrow-minded view held by the IDSA, and ridiculous that a medical society like the IDSA should be AGAINST RESEARCH.
Since CT Attorney General Blumenthal found, in his investigation, that the IDSA suppressed scientific evidence, and blocked participation by physicians holding different viewpoints on treating Lyme disease, when they developed their guidelines,
why should Rep. Pallone, an elected representative of the people, wait for the IDSA to revisit their guidelines, guidelines reached through a corrupt process, where there was lack of disclosre of conflicts of interest, in order to clear the way for the funding for much-needed research that will help very ill patients recover. Sandy Berenbaum, LCSW 5/22/2008 7:40:43 AM
******************************* rstricker wrote:
When Phillip Baker worked at NIH, he obviously missed the animal and human studies that demonstrate persistent infection and failure of short-course antibiotic therapy in chronic Lyme disease, and the studies showing benefit of longer antibiotic therapy in Lyme patients.
Of course, he did have time to endorse a Lyme vaccine that sickened hundreds of patients before it was withdrawn by the manufacturer.
Now as Executive Director of ALDF, Dr. Baker will have plenty of time on his hands.
ALDF has a record of doing nothing for patients or physicians who are battling Lyme disease, and judging by Dr. Baker's comments he intends to continue that do-nothing tradition.
NOTE: bolding was Betty's emphasis; not writers!
Unfortunately, Rep. Pallone seems to be following his lead.
Let's hope that Congress can find a way to help the alarming number of patients with this miserable illness by passing HR-741 now.
Raphael Stricker, MD Past President, ILADS
5/22/2008 4:26:33 AM ***************************
dcamer10 wrote:
I was disappointed to hear that the executive director of the American Lyme Disease Foundation, Dr. Philip Baker, supported Rep. Frank Pallone Jr., decision to delay the Lyme disease bill.
Dr. Baker came to this conclusion based on his 13 years of work as program officer at the NIH.
He cited treatment failure as evidence that doctors should no longer treat chronic Lyme disease patients.
He never addressed that chronic Lyme disease patients in the trials were sick for up to 9 years with a quality of life worse than patients with diabetes and heart disease.
The headlines could easily have read,
�Chronic Lyme Disease � A National Health crisis.�
I sincerely hope the Dr. Baker is true to his word that he �has great respect and empathy for Lyme disease patients� to support a bill that brings a diverse group of doctors and patients together to solve the crisis.
Increasing awareness, educating the public about tick-borne diseases, continuing research, establishing an advisory committee.
We need additional research and education NOW to reduce the risk of contracting Lyme & associated diseases.
If awareness, research and the education of our citizens is complete -
Why do so many folks not know the proper way to remove a tick - by using fine pointed tweezers grasp the tick as close to the skin as possible and pull straight up with a steady motion.
Why did the reported cases of Lyme in my home state, Maine, increase from 338 cases reported in 2006 to 529 cases in 2007?
If we are doing such a good job on educational, treatment and research activities, shouldn�t the number of cases be going down, not increasing?
Why are screening tests only 50% to 70% accurate?
Awareness, education, research & establishment of an advisory board are essential to reduce the risk of our citizens contracting the most common vector-borne disease in the United States. 5/21/2008 5:13:39 PM
************************ daphnea wrote:
Like the panel that set up the IDSA guidelines, Rep. Pallone also has not paid attention to those with the other experiences, from both doctors and patients.
Thus Rep. Pallone�s decision is biased, and not in the best interests of the American population who may be infected, misdiagnosed, and inadequtely treated, as seen in the �Under Our Skin� documentary.
Finally, these guidelines infiltrate international health policies both in the America�s and Eurasia.
It is beyond belief that anyone could claim a few seriously weak studies used to develop treatment guidelines for infections from complex and diverse borrelia species, and would discount the effects of co-infections and immune system breakdown, for every single person in this country, on this continent, and this world.
2000 Status of Borrelia burgdorferi Infection after antibiotic treatment and the effects of corticosteroids: an experimental study
Straubinger RK; Straubinger AF;. Summers BA; Jacobson RH; 1998 Clinical manifestations, pathogenesis, and effect of antibiotic treatment on Lyme borreliosis in dogs Wien Klin Wochenschr, 110(24):874-81
5/21/2008 4:22:37 PM
************************* daphnea wrote:
NIH has funded studies that unfortunately have serious weaknesses, that prohibit their generalization to an entire population of patients with tick borne diseases. These include the sole use of a single specific antibiotic, over and over again.
If it did not work the first time, why is it used a second time?
To me, this would beg for H.R. 741 since it would allow input from clinicians and patients, in developing studies using the antibiotics that are effective, instead of repeating the same ineffective treatment.
5/21/2008 4:20:07 PM recommend --2--
************************* itsyb wrote:
Persistence of Borrelia garinii and Borrelia afzelii in patients with Lyme arthritis. Hulinska D, Votypka J, Valesova M. Int J Med Microbiol Virol Parasitol Infect Dis 1999 Jul;289(3):301-18
Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice Antimicrob. Agents Chemother. doi:10.1128/AAC.01050-07 Copyright (c) 2008, American Society for Microbiology and/or the Listed Authors/Institutions. All Rights Reserved.
Emir Hodzic, Sunlian Feng, Kevin Holden, Kimberly J. Freet, and Stephen W. Barthold* Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis, One Shields Avenue, Davis, CA 95616
Straubinger RK. 2000 PCR-based quantification of Borrelia burgdorferi organisms in canine tissues over a 500-day postinfection period. Journal of Clinical Microbiology, 38(6):2191-2199
5.21.08 4.18.12 pm
******************** LishkasMom wrote:
Pallone, I understand your wanting to wait.
My daughter was bit in 93, she nearly died because IDSA 'had no proof there was Lyme in Oregon'.
We (ILADS) asked for inclusion on research then , we asked for inclusion on the new guidelines in question, we asked for legislative help because YOUR CONSTITUENTS ARE SICK .
My daughters proof, (known tick, fever, swelling, positive CDC test, positive PCR tests, etc) was not enough proof for the IDSA .
YOU BETTER PRAY YOUR FAMILY IS NOT STRUCK WITH THIS ILLNESS AND IF IT IS YOU BETTER HOPE YOU HAVE GOOD FRIENDS IN THE IDSA WHO WILL TREAT YOU UNDER THE TABLE.
SHame on you for not listening to the public who have hired you and have no problem FIRING you!
Yes, we are mad. 160K to treat our daughter over the last four years, but she is no longer disabled.
Would do it again if I had to.
BUT WHY SHOULD I HAVE TO?? Because the IDSA/ Insurance company who give you $$$$ are more important! SHAME SHAME
5/21/2008 4:18:07 PM Recommend (2)
****************************** daphnea wrote:
Long term antibiotics is used in numerous infections, and there are always caveats and potential for problems incurred while using antibiotics.
A quick internet search will turn up many forums with drug reactions. Many use them with no problems.
The continual reference to this �one death� ( IV infection) is constantly repeated by proponents of IDSA, when over 200,000 people per year are treated for lyme and other tick borne diseases without this devastating consequence, using orals, and that no reference is made to the overall occurrence of IV infections overall.
We hear you, but we also know the overall rate, so this becomes a scare tactic and misuse of statistics, rather than sound science.
5/21/2008 4:17:37 PM daphnea Recommend (3)
************************ daphnea wrote:
There is plenty of evidence showing persistence of the spirochete after treatment.
However, it is magically disallowed by saying it is not enough to cause symptoms. Yet this statement has no evidence to support it.
How many spirochetes does it take to cause symptoms?
Persistence is also disallowed by saying the symptoms are a simple post infection syndrome.
Again, there is no evidence to support this statement. It is circular reasoning.
A syndrome is just a cluster of symptoms, of unknown etiology, yet the evidence showing presence of the spirochete, is disallowed.
5/21/2008 4:16:00 PM daphnea Recommend (2)
********************** itsyb wrote:
Sure! Be glad to! Want some from Europe and some animal studies. too?
Persistence of Borrelia burgdorferi sensu lato in patients with Lyme borreliosis Honegr K, Hulinska D, Dostal V, Gebousky P, Hankova E, Horacek J, Vyslouzil L, Havlasova J. Infekcni klinika, Fakultni nemocnice, Hradec Kralove. Epidemiol Mikrobiol Imunol. 2001 Feb;50(1):10-6.
2001 Isolation and polymerase chain reaction typing of Borrelia afzelii from a skin lesion in a seronegative patient with generalized ulcerating bullous lichen sclerosus et atrophicus.
144(2):387-392.
Cimperman J; 1999 Lyme meningitis: a one-year follow up controlled study. Wien Klin Wochenschr, 111(22-23):961-3 Maraspin V; Lotric-Furlan S; Ruzic-Sabljic E; Strle F.
5/21/2008 4:09:23 PM itsyb Recommend (3)
********************** shazdancer wrote:
Emir Hodzic, Sunlian Feng, Kevin Holden, Kimberly J. Freet, and Stephen W. Barthold, 2008. Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice. Antimicrob. Agents Chemother.
In this mouse study, mice were "adequately" treated for Lyme, previously uninfected ticks fed on them, then fed on "naive" mice.
The naive mice tested positive for Lyme via PCR, though they did not create disease in the new mice (judged by heart and joint defects).
No knowing if they might have produced disease later, under the right conditions.
Krupp et al, 2003. Study and treatment of post Lyme disease (STOP-LD) :
A randomized double masked clinical trial . Neurology
Another of the "4 NIH studies." Fatigue improved, cognitive impairment did not.
It should also be noted that, in both of these studies, the subjects were those who had already failed IV antibiotic treatment in the past, and length of treatment was less than might have been prescribed under ILADS protocols for a severe infection.
In other words, the worst patients you can find, inadequately re-treated, still showed signs of improvement on antibiotics.
Did they get better due to Lyme killing, or from anti-inflammation? We do not know.
But they DID get better from something, which for many meant being able to return to their lives.
And I have to wonder if they were instead treated with pain prescriptions, sleep aids, and antidepressants, if the risk might have been even worse.
There are more recent studies, but take note that many of the older studies cited by itsyb were confirmed by PCR.
Some were even written by panelists of the IDSA guidelines.
Did they even read what they signed their names to? One wonders.
BA Fallon et al, 2007.
A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology
This is one of the "four NIH studies" cited by Baker. Despite his assertion that, "None of these studies showed such treatment is beneficial," this study pointed out that the patients regained cognitive skills temporarily (they relapsed) but sustained improvement in fatigue, pain, and physical function.
5/21/2008 3:34:55 PM shazdancer Recommend (2)
***********************
lymebill741 wrote:
Oh, one more thing, you keep parroting the 8000 IDSA members who totally agree; I know five past IDSA members who were removed from the association when they questioned the IDSA guidelines and treated clinically longer than your guidelines.
I also know that while 8000 membership in the IDSA only a handful of those actually personally reviewed the published works prior to diseminating them, and that all 8000 members have not seen the 16 pages of "Seronegativity in Chronic Lyme" with 97 studies showing chronic post treatment infections by PCR and culture.
NOTE: Betty bolded this for emphasis!
Further, how many of those PhDs have asked Cornell University Veterinary college and other veterinary research facilities IF THERE IS CHRONICE LYME??
If they had, would they still concur that there is no chronic lyme?
5/21/2008 3:32:55 PM lymebill741 Recommend (3)
**************************** lymebill741 wrote:
As laypeople, we have found many articles in favor of Chronic Lyme.
We dont get paid to go either way on this issue.
So what is your motive IDSA???
The proof IS there, please don't pretend just because we don't carry PHD behind our name we are stupid.
American 1997 Lyme encephalopathy may surface despite antibiotic treatment.
Hudson BJ; 1998 Med J Aust, 168(10):500-2 Lyme borreliosis. Culture positive for Borrelia garinii, despite repeated prior treatment with antibiotics.
Lawrence C Lipton RB; Lowy FD; Coyle PK.995 Seronegative chronic relapsing neuroborreliosis. European Neurology, 35(2):113-7
Branigan P; Rao J; 1997 PCR evidence for Borrelia burgdorferi DNA American College of Rheumatology
Wittwer CT; manifestations and serologic responses. 105(5):647-54 Litwin CM; TD; as detected by PCR. Deterction by polymerase chain .. partially treated and seronegative chronicdisease
5/21/2008 3:20:53 PM lymebill741 Recommend (3)
******************************* ReefRoamer wrote:
itsyb...anything more recent than ten years ago? 5/21/2008 1:29:09 PM
******************* cave76 wrote:
" Clinical case reports and large clinical series indicate that some patients benefit from longer and repeated courses of antibiotic therapy.
Published reports indicate that, even after antibiotic therapy, persistence of the spirochete Borrelia burgdorferi may be demonstrated by either culture or demonstration of Bb DNA by PCR analysis in animals and humans.
The mechanisms of persistence and immune evasion are thought to include sequestration in intracellular or other immunologically privileged sites, antigenic variation,....[edit]
Much evidence now exists to demonstrate that Bb can lodge intracellularly in human endothelial cells, astrocytes, fibroblasts, and macrophages. [edit]"
I could go on and on...and post studies from Europe and asia as well.
This 'myth' that there is 'no proof' just keeps getting parrotted by folks who didn't do their homework.
And it is a shame, really, to perpetuate this information as nauseam.
The press has the reponsibility to do real journalism to investigate the truth.
5/21/2008 11:40:06 AM itsyb Recommend (2)
***************** itsyb wrote:
Dattwyler RJ; Halperin JJ. 1987 Failure of tetracycline therapy in early Lyme disease. Arthritis & Rheumatism, 30:448-450
Berger BW. 1986 Treating erythema chronicum migrans of Lyme disease. Journal of Am Acad Dermatology, Sep;15(3):459-63
Culture-confirmed Treatment Failure of Cefotaxime and Minocycline in a Case of Lyme Meningoencephalomyelitis in the US. Liegner KB, Rosenkilde CE, Campbell GL, Guam TJ, Dennis DT 1992 V Int Conf Lb abs #63
Persistence of Borrelia burgdorferi Antigens in Patients receiving Long-Term Antibiotic Therapy. Drulle J, Eiras E. 1992 V Int Conf Lb abs#70E
Steere AC; Duray PH; Butcher EC. 1988 Spirochetal antigens and lymphoid cell surface markers in Lyme synovium and tonsillar lymphoid tissue. Arthritis & Rheumatism, 31:487-495
Dattwyler RJ; Volkman DJ; Luft BJ; Halperin JJ; Thomas J; Golightly MG. 1988 Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine, 319(22):1441-6
Schmidli J; Hunziker T; Moesli P; et al. 1988 Cultivation of Borrelia burgdorferi from joint fluid three months after treatment of facial palsy due to Lyme borreliosis.
5/21/2008 11:36:51 AM itsyb Recommend (2)
*********** itsyb wrote:
Reik L Jr. 1993 Stroke due to Lyme disease. Neurology, 43(12):2705-7
Dinerman H; Steere AC. 1992 Lyme disease associated with fibromyalgia. Annals of Internal Medicine, 117:281-5
Agger W; Case KL; Bryant GL; Callister SM. 1991 Lyme disease: clinical features, classification, and epidemiology in the upper midwest. Medicine (Baltimore) Mar;70(2):83-90
MacDonald AB; Berger BW; Schwan TG. 1990 Clinical implications of delayed growth of the Lyme borreliosis spirochete, Borrelia burgdorferi.
Logigian EL; Kaplan RF; Steere AC. 1990 Chronic neurologic manifestations of Lyme disease. New England Journal of Medicine, Nov 22; 323(21):1438-44
5/21/2008 11:35:57 AM itsyb Recommend (2) **************************
[ 23. May 2008, 03:24 AM: Message edited by: bettyg]
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic