posted
I am trying to figure out why some doctors like my doctor, Dr. D from MA who is supposedly a very LLMD, choose not to follow Dr. Burrascanos guidelines if Dr. B is so popular and have helped so many people.
Is it because Dr. B does not cite any sources for his guidelines? I havent been able to find any such sources over the internet on Dr. Burrascano's guidelines. If there are sources that he bases his guidelines on and anyone has a link, I would like to see it.
I am not doubting that his reccomendations are credible, I just think that if he DOES have sources or has done research to back up his claims then it would be easier to get this sort of treatment from LLMDs since they would be more likely to follow suit if there was actual evidence that his protocols worked. I have looked all over pubmed for any such studies, specifically treatments for coinfections and his use of supplements but have found nothing.
Perhaps if Dr. B's guidelines are really from his own research from years of practice and only his own expereince, then could there be no sources because of the political lyme war going on? i just dont get why if his protocol works, i cant find any evidence to back up his claims through any studies surfacing on the internet.
so if anyone has a link to such sources if they exist, please let me know. and if not, any links to studies that will show that what he suggests truly works will do.
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
and how does dr.d from ma treat lyme? so different than burrascano?
Posts: 159 | From Germany | Registered: Nov 2010
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lululymemom
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I think it may be becoming more and more apparent that the treatment guidelines don't work for everyone, especially with CLD. They may still use it as a basis for treatment but doctors seem to be taking a more integrative approach with this illness.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Abxnomore
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Dr. D. has been around for years. His treatment approach is very narrow. Always has been. Years ago he used mainly tetracycline. He is not getting great outcomes because of his approach.
It may serve him well to follow Dr. B's guidelines and serve his patients better, too.
He is one of the early hand few of doctors who started treating aggressively.....that is what was considered aggressive many years ago. It's most probably an ego personality/political thing. He wants to do his own thing but he's not making many well. Wouldn't recommended him for advanced or complicated cases, in fact I would not go to him in any case.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Sammi
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I agree with Abxnomore. I know of many who switched from Dr. D.
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TF
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What I have always heard is that Dr. D is a nice guy but he doesn't get people well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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17hens
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I thought Dr. B didn't cite sources because he IS the source.
I mean it's kinda like me with cooking. No one was around to teach me how to cook. I taught myself and worked on a recipe until it tasted good. Then I wrote the recipe down. No sources needed.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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TF
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Right. Burrascano was the lyme disease pioneer. To help out other doctors, he started writing down what he had discovered. He did this starting in 1984.
Burrasacano was so successful at treating lyme that he became known all over the world for his ability to get people well. People came to him from all over the world.
Now, doctors in many countries follow his Guidelines. One woman in Poland told me that there are 6 lyme docs in her country and they all follow Burrascano.
A guy on Long Island recently told me he is always running into people who got cured of lyme by seeing Dr. B.
In my area, the most successful lyme doctors are the ones who follow Burrascano. They have gotten me and all my friends well.
When a doctor is practicing medicine, he can't at the same time do medical trials and publish studies.
How would you like to be in the group of patients who didn't get what the doc thought was the best treatment? You got the placebo, or the standard conventional (low-dose, known not to cure) treatment, etc.
When a doctor is a researcher, he can get a Government grant, announce a clinical trial and have people agree to participate (and, treat them for free), knowing that they may be getting "dummy" pills. Burrascano wasn't a researcher. He was a practicing doctor all about getting everyone well.
Now, he stopped practicing and is encouraging all doctors to submit their treatment data to him so that he can put it all in the form of a study. This is to satisfy those in the medical profession who keep yelling that there haven't been any studies proving that long-term antibiotic treatment does any good.
The lyme docs I know say it takes way too much time to do what Burrascano wants to do, so they aren't doing it.
Here is what Burrascano says at the beginning of his Guidelines about where his information is coming from:
"Welcome to the sixteenth edition of the �Guidelines�. Amazingly, this edition is not only the sixteenth in the series, but as the first edition appeared in 1984, this reflects twenty four years of effort!
Since the last edition, enough new information has become available to justify this revision. New insights regarding co-infections, tests and treatment regimens are included. Nearly every item has been revised, but despite great effort to condense the information, the huge amount of new information included here has resulted in more pages than ever. Information included here is based on the literature, presentations at scientific meetings, the many valuable observations noted by my colleagues, plus experience from caring for my own patients. I have tried to make this information as up-to-date as possible and as inclusive as is practical. Please use the information presented in this document as an information resource and guide. It can never replace your own experience and clinical judgment.
I once again extend my best wishes to the many Lyme patients and their caregivers whose wisdom I deeply appreciate, and a sincere thank you to my colleagues whose endless contributions have helped me shape my approach to tick borne illnesses. I hope that this new edition proves to be useful." (page 3)
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You have to remember that Dr. B's guidelines are really just his thoughts put on paper. None of them are proven, nothing scientific to it. Another doctor who treats many Lyme patients could have guidelines which are just as credible.
I go to one of the best if not THE best llmd in the country and he doesn't necessarily follow all of Dr. B's guidelines. There just his personal thoughts, opinion, and observation- remember that.
Posts: 306 | From NY | Registered: Sep 2010
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quote:Originally posted by 17hens: I thought Dr. B didn't cite sources because he IS the source.
- I like how you get to the point, hens!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Abxnomore
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nybasketball212 can you provide the first initial of one of the best LLMD's in the country. I'm assuming he's in NY based on your location, if not can you also provide the state.
Thanks.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
ok i mentioned that Dr.B's guidelines might not cite sources because HE is the source. i get that that is the possibility. However, Dr. D was also one of the pioneers in treating lyme aggressively and all of his research he cites and has his research or studies published in medical journals.
With Dr. B, you dont see hardly any of his research published anywhere. Either his research was not valid and therefore couldnt be published, his research was rejected, or he didnt even bother to record his research well enough to be published. I dont know which one of these reasons it could be, but nonetheless it makes his research less credible for obvious reasons.
I am pretty sure that Dr. D and other doctors really couldnt argue with Dr. B's guidelines if they were cited, because they could very well become the gold standard for treating Lyme IF HE PROVES THIS. without the necessary proof from Dr. B, unfortunately people arent going to get treated under his guidelines by LLMD"S because the LLMD's can just say " I dont follow Dr. B because there isnt any proof to his claims if he doesnt have his research published"
any doctor can claim that his treatment works the best, and it could very well be the best. but unless hes willing to provide evidence, then his protocol will often not be followed.
Posts: 723 | From boston,ma | Registered: Jan 2011
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quote:Originally posted by Abxnomore: Dr. D. has been around for years. His treatment approach is very narrow. Always has been. Years ago he used mainly tetracycline. He is not getting great outcomes because of his approach.
---------
He is one of the early hand few of doctors who started treating aggressively.....that is what was considered aggressive many years ago.
agree
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
and yes, i agree that Dr. D might be treating his own way out of pride and arrogance to have his own protocol like Dr. B. But if LLMD's doctors choose to ignore research because they want to unique in their own treatment out of pride it will just hinder proper treatment of Lyme patients. I would rather have a doctor that derives pride from his work because hes in for it for the humanitarian part of it rather than the political parts, and the prospect of getting the money and the fame.
Not alot of doctors satisfy my ideal, not by a long shot. but id still like to be treated based on what works rather something seemingly arbitrary.
Posts: 723 | From boston,ma | Registered: Jan 2011
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quote:Originally posted by katrinab: [QB] and yes, i agree that Dr. D might be treating his own way out of pride and arrogance to have his own protocol like Dr. B. But if LLMD's doctors choose to ignore research because they want to unique in their own treatment out of pride it will just hinder proper treatment of Lyme patients. I would rather have a doctor that derives pride from his work because hes in for it for the humanitarian part of it rather than the political parts, and the prospect of getting the money and the fame.
Not alot of doctors satisfy my ideal, not by a long shot. but id still like to be treated based on what works rather something seemingly arbitrary.
-
and that is why so many follow Dr B's guidelines. It WORKS.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
yea, well this definately needs to be proven somehow in order for other docs to follow suit and patients can get the best care. its not like Dr. B is dead and all of his research was thrown in the garbage. Hes a famous guy and smart too, im sure he could put in the necessary work to have his stuff published and if hes choosing not to how can he really care about his patients?
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
So... research is more important than getting patients well??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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jackie51
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quote:Originally posted by katrinab: yea, well this definately needs to be proven somehow in order for other docs to follow suit and patients can get the best care. its not like Dr. B is dead and all of his research was thrown in the garbage. Hes a famous guy and smart too, im sure he could put in the necessary work to have his stuff published and if hes choosing not to how can he really care about his patients?
Not sure I understand what you are trying to infer.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Sammi
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kartrinab, I don't know if you are aware that Dr. B. himself had Lyme disease.
Do you have co-infections? I suggest doing as much research as possible on available treatment protocols so you can make the best choices for your treatment.
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lyme too, i am trying to explain that research is necessary TO get more patients well. without his documentated research, few doctors will treat patients based on a protocol that has nothing to back it up. in order for patients to get their wish of being treated properly with these guidelines, the research will have to come first.
no, sammi, i did not know he had lyme disease. but i dont think that adds anymore weight to his work for the CDC or IDSA does it? if peoole dont want to be treated by guidelines like the CDC that wont help them, than the fight for proper treatment lies in new research. i dont know if i have coinfections, tests came back neg. i have compared the protocols of the CDC, Dr. d, and Dr. B and Dr. B seems the least conservative and most helpful. However, I think I am going to have a hard time getting a doc to
follow his protocol since my current doc has already implied that most of what he rec's are simply claims, at least for now.
Posts: 723 | From boston,ma | Registered: Jan 2011
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quote:Originally posted by katrinab: lymetoo, i am trying to explain that research is necessary TO get more patients well. without his documentated research, few doctors will treat patients based on a protocol that has nothing to back it up. in order for patients to get their wish of being treated properly with these guidelines, the research will have to come first.
- That's very far from the truth. I would say more LLMD's use Dr B's guidelines than ANYTHING else.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
i know many people who have a hard time finding a LLMD. this is part of the problem. yes, there are LLMD's who do use his guidelines, but there would be even MORE if these guidelines served as proof to the government. dont you think that the CDC and IDSA would eventually stop limiting their treatment to patients if there was a public outcry as a result of the gov't ignoring good research on lyme? my point is that far more people could be helped who have lyme if these guidelines that work for alot of people were hard to ignore.
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
That would be nice .. but don't hold your breath for it to happen. There is all kinds of research they are already ignoring and have for years and years.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
17 hens, i totally missed your analogy. so yea if you make a recipe you are the source. the only problem with the analogy is that you wrote down the recipe, Dr. B didnt. well he did he just didnt do it right, and its just useless to those who can get away with ignoring it.
Posts: 723 | From boston,ma | Registered: Jan 2011
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jackie51
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kb--we all know the importance of research, and certainly it is not the holy grail especially in lyme disease.
You need to do a lot more of your OWN research and then decide for yourself.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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17hens
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The only ones who ignore Dr. B's guidelines are the CDC and IDSA. But they ignore lots of excellent cited research too, so obviously they're not wanting to see what's being proven true or what works.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Abxnomore
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Through the years there has been as much public out cry as the Lyme community could muster. Protests in Albany, protests in D.C., bills repeatedly presented in congress and often times knocked down, laws passed in some states requiring a minimum amount of IV therapy, a documentary "under our skin" show in nation wide
movie theaters, an investigation of the IDSA by Connecticuts then Attorney General, lots of books written and tons of research, guidelines presented by Dr. B and updated and revised several times and the emergence of the ILADS and LLMD's.
When an illness becomes political and the organization that makes it so holds huge political clout this is what you get.
Have we made huge progress, yes. Is there a public out cry yes. But any kind of change unfortunately is a slow process when the organization that has the power and official recognized legitimacy are the very ones holding back the research, the education of the public and of its own medical and scientific community.
But we won't stop, ever, until the day comes that Lyme can officially come out of the closet and we can walk into any doctor's office for help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Warning: This is a terribly long response to your thread. lol
Many, including patients on this Board, have been begging for research for years.
I strongly recommend that you read "Cure Unknown," by Pam Weintraub. From the probing questions you are asking, I'm led to think that you will enjoy this book.
The Lyme Controversy is more complex then most of the population could ever know. Lyme patients have to learn about it in order to save their own lives.
However, most people, including doctors, don't want to take the time to understand the myriad nuances that accompany the history and politics surrounding Lyme Disease.
Pam's book will explain all of that and more.
In order for Doc B to have done any type of "formal" research that would have been acceptable to "the Government" and IDSA sources you bring up, he would have needed money and resources.
Medical Research money these days (as well as in Doc B's days of practicing)comes primarily from Government grants, and the research is usually connected with an academic institution.
The academic institution during Doc B's time that was doing Lyme Research was Yale. The IDSA panel that wrote the dubious and conflicted IDSA Lyme Treatment Guidelines was spearheaded by Yale academic physicians.
That IDSA panel also ghost-wrote the Lyme Treatment Guidelines for the American Academy of Neurology -- unbeknownst to most neurologists, I might add.
I ask you .... when and where on earth was a physician with a solitary medical practice, who was constantly under fire from IDSA and its ever-so-malignantly tentacled and far-reaching arms, going to get a grant for formal double-blinded medical research on Lyme Disease and Treatment?
There are alot more points that could be brought up in response to your queries; however, as I said, the topic is entirely too convoluted (and quite beyond the scope) of a patient support forum thread like this.
From Dr. Burrascano's 1993 Testimony to the United States Senate:
The Lyme Disease Conspiracy by Joseph J. Burrascano, Jr., M.D. Reprinted from Senate Committee Hearing on Lyme Disease August 5, 1993 ________________________________________ There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. They exert strong ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions. They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest.
This group promotes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics. The truth is that Lyme is the fastest growing infectious illness in this country after AIDS, with a cost to society measured in the billions of dollars. It can be acquired by anyone who goes outdoors, very often goes undiagnosed for months, years, or forever in some patients, and can render a patient chronically ill and even totally disabled despite what this core group refers to as "adequate" therapy. There have been deaths from Lyme disease.
They feel that when the patient fails to respond to their treatment regimens it is because the patient developed what they named "the post Lyme syndrome". They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system.
The fact is, this cannot be related to any consistent abnormality other than persistent infection. As further proof, vaccinated animals whose immune system has been activated by Lyme have never developed this syndrome. On the other hand, there is proof that persistent infection can exist in these patients because the one month treatment did not eradicate the infection. Indeed, many chronically ill patients, whom these physicians dismissed, have gone on to respond positively and even recover, when additional antibiotics are given.
It is interesting that these individuals who promote this so called "post-Lyme syndrome" as a form of arthritis, depend on funding from arthritis groups and agencies to earn their livelihood. Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff, even if the patient will suffer. This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
Following the lead of this group of physicians, a few state health departments have even begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diagnosis and treatment than they do. Indeed, I must confess that I feel that I am taking a large personal risk here today by publicly stating these views, for fear that I may suffer some negative repercussions, despite the fact that many hundreds of physicians and many thousands of patients all over the world agree with what I am saying here. Because of this bias by this inner circle, Lyme disease is both underdiagnosed and undertreated, to the great detriment to many of our citizens. Let me address these points in more detail.
UNDERDIAGNOSIS 1. Under reporting: The current reporting criteria for Lyme are inadequate and miss an estimated 30 to 50% of patients. Some states curtailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40%, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline. The reporting procedure is often so cumbersome, many physicians never bother to report cases. Some physicians have found themselves the target of state health department investigators. Finally, to many physicians and government agents rely on the notoriously unreliable serologic blood test to confirm the diagnosis.
2. Poor Lyme disease diagnostic testing: It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases, yet many physicians, including many of those referred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diagnosed clinically, and can exist even when the blood test is negative.
The Rocky Mountain Lab of the NIH, which is the country's best government laboratory for Lyme research had developed an excellent diagnostic test for this illness nearly 4 years ago, yet further work on it has been stalled due to lack of funding. Incredibly, if not for private donations of just $5,000 from the non-profit National Lyme Disease Foundation headquartered in Connecticut, then this reaseach would have had to be abandoned. An additional $30,000 was donated by this organization to allow them to continue other valuable projects relating to vaccine development and disease pathogenesis. Yet, many physicians believe that thousands of dollars of grant moneys awarded by the government to other, outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded.
3. The university and Government based Lyme establishment deny the existence of atypical presentations of Lyme and patients in this category are not being diagnosed or treated, and have no place to go for proper care.
RESULTS: Some Lyme patients have had to see, as many as 42 different physicians often over several years, and at tremendous cost, before being properly diagnosed. Unfortunately, the disease was left to progress during that time, and patients were left forever ill, for by that time, their illness was not able to be cured. Even more disturbing, these hard line physicians have tried to dismiss these patients as having "Lyme Hysteria" and tried to claim they all were suffering from psychiatric problems!
UNDERTREATMENT 1. Because the diagnosis is not being made, for reasons partly outlined above. 2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information. 3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll. 4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae. 5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared. Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative. 6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.
The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease. Thank you. ________________________________________ By: Joseph J. Burrascano, Jr., M.D.
Posts: 503 | From Maryland | Registered: Oct 2007
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17hens
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Have you read Tincup's thread "Past medical testing (crimes) on humans?"
We shouldn't be surprised at what they're willing to "ignore", cited research or not.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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TF
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katrina,
You are obviously new to the lyme disease world. The history of how Dr. Burrascano was persecuted and the attempts to totally destroy him by those whose reputations and financial gain was at stake when Burrascano and Dr. McDonald showed that long-term treatment was necessary (back in the early 80s) to cure lyme disease is evidently unknow to you.
Things are much more complex than what you can possibly think. There are a lot more options than the ones you list in your posts--options you obviously can't even imagine.
To give you an idea of what went on when Burrascano was figuring out how to successfully treat lyme disease, and how he was ACTIVELY RESISTED from the start by the medical establishment, and how they tried to totally discredit him and ruin him, watch this video of Burrascano telling the story:
Quote: " I love listening to Dr. Burrascano..he is talking here how he got started in LD treatment, it really is interesting to hear how he didn't know what was wrong with his patients and didn't know how to treat this new bacteria and doing (then considered) "radical" 3 weeks of IV didn't cure them...and the politics and insurance companies that tried to stop him.
Opens to Windows (Pamela Weintraub author of Cure Unknown introduces him - if you want to hear her speak, look further down here in the forum for he link):
Notice how often Burrascano says he did "studies" and notice how the medical community reacted. We all know these things and we watched them try to destroy Burrascano for years.
You really need to delve more deeply into this if you want to know what is really going on in the medical controversy that is lyme disease.
Listen over and over to Burrascano's testimony before the U.S. Congress in which he says that these high-level medical officials had conflicts of interest (money to be made) by supressing his findings regarding lyme disease.
So, we all know that it isn't as simple as publish the studies and everyone will fall down and say, "Oh, you are right!" No way. Sorry, life is more complex and more nasty than that. Truth is often stranger than fiction.
And humble Dr. Burrascano would never tell this story you watch on this video until many, many years later. When I went to hear him speak at lyme conferences, he would not go into this stuff, would not tell people the "dirt and filth," and would just educate all who would hear about lyme disease.
I was so thrilled that he finally told us all what went on in this video. The man didn't try to defend himself all these years. So, when you want to criticize him for what he did, be sure you know what you are talking about.
I know you are upset about something, but really, it should not be about Burrascano not doing perfect studies so that everyone will have to fall at his feet and admit that he was right.
That may never happen in any of our lifetimes, given the fallen nature of human beings.
Also, please know that many other diseases had the same kinds of beginnings, with the pioneers being persecuted and discredited, only to eventually be proven right 50 or more years later.
This story of the lyme controversy is just so very complex and has been going on for such a long time. Look into it a little more.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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17hens
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Member # 23747
posted
katrina,
The truth is, the whole subject for any lyme disease sufferer is a sore one from beginning to end.
I give you much credit for the logical thinking and good questions you have.
Too bad there are no very good, logical answers for us to give you.
I hope you have been able to receive our replies to your questions in the nature they were intended.
I believe everyone tried their best to stay calm and respectful, although it's difficult for us not to get our hairs raised when we talk about the subject.
The whole thing is still so unbelievable to me. Who could do this to another human being? Turn their head to another's suffering? And for what? Money? Power? Unfathomable (although certainly not the first time.)
But just like Abxnomore says, "But we won't stop, ever, until the day comes that Lyme can officially come out of the closet and we can walk into any doctor's office for help."
Woo! Woo! Woo! (with the arm twirl!)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Camp Other
Unregistered
posted
Wow, katrinab, you hit on a topic that is important to me, too.
I have read all that is to follow after your initial post - was aware of these issues years ago. I read "Cure Unknown" twice, and perhaps now that it's been mentioned again, I'll reread it - but as you can see from a recent blog entry, I have quite a list of other books to read at the moment.
Yes, there have been setbacks and roadblocks on the road to getting more research - but one shouldn't give up. There is important work to be done, even if there are detractors and the IDSA disagrees. I say let them disagree, and do your own thing. Conduct research without them.
I think if a doctor does have success, maybe he doesn't have time to document what he is doing and symptom improvement - and with a program like ILADS training program, young physicians learning from someone like Burrascano and others could record the data on patients and anonymize it for sharing with other doctors.
An intern could take the time to document why a given drug is used for a specific pathogen at which dosage how often and back it up with citations. Explain how each medication is associated with an aspect of, say, Borrelia's form and antigenic variation. Even if it is speculative, show the scientific reasoning behind its application.
There is a Lyme Research Center at Columbia University where more research could be funded to focus on issues which are important to us, and Eva Sapi and other researchers have done research outside of Columbia on Lyme disease. With targeted support from the right donors and help from other independent and young researchers - I'm certain more could be done.
What's been done (re IDSA, politics) in the past is terrible. You won't get an argument from me. Petitioning for doctor protection to treat is one way of handling problems in the present and future, and it's good to focus on that avenue, and good to focus on awareness of Lyme disease and other tickborne infections so we can prevent more people from suffering.
But I think the drive for research must continue both in the US and overseas in order to get more data and credibility. I know there is research that has been done in the past and that, too, has to be shared more with the media and people need to be educated about the current state of the science.
I don't know whether you'll find the article below germane to the ongoing conversation here or not. Perhaps you've seen this article during your research.
The issues addressed in this article speak to the many problems inherent in studying and treating this polymicrobial infection.
I'm going to post the article in its entirety, so this'll be long.
Raphael B Stricker & Andrew Lautin Expert Opin Investig Drugs. 2003 Oct;12(10):1609-14
1. Introduction 2. Assertions and comments 3. Expert opinion and conclusion
The Lyme Wars: Time To Listen
Raphael B Stricker* & Andrew Lautin *Department of Medicine, California Pacific Medical Center, San Francisco, CA, USA
Lyme disease represents a public health threat of major proportions. The murky science and acrimonious politics of Lyme disease have created barriers to reliable diagnosis and effective treatment of this protean illness. Two major clinical problems with the disease are the absence of a therapeutic end point in treating Borrelia burgdorferi, the spirochetal agent of Lyme disease, and the presence of tick-borne co-infections such as Babesiosis, Anaplasmosis and Bartonellosis that may complicate the course of the illness. From a pathophysiological standpoint, the affinity of B. burgdorferi for multiple cell types and the presence of non-replicating forms of the spirochete have contributed to persistent infection and failure of simple antibiotic regimens.
Newer approaches to the treatment of Lyme disease should take into account its clinical complexity in co-infected patients and the possible need for prolonged combination therapy in patients with persistent symptoms of this potentially debilitating illness. The risk and prevention of human transmission of Lyme disease merit further study.
Virtually from the moment of its discovery in 1975, Lyme disease has been a controversial illness [1,2]. The controversy is grounded in the murky nature of the disease, from its protean manifestations and inconsistent diagnostic parameters to its uncertain treatment. In addition to these scientific inconsistencies, the politics surrounding Lyme disease rivals the worst medical defamation in history, from syphilis (always the 'other country's venereal disease') to AIDS (the 'scourge of alternative lifestyles'). Perhaps the political apogee of Lyme disease came in 1993, when Joseph Burrascano testified before the US Congress that Lyme disease was not "hard to catch and easy to cure", as others had reassured the government. Rather, the disease was an underreported and growing menace that would exact a huge toll on the healthcare system if policy did not change [3,4]. For his efforts, Burrascano was prosecuted by his state medical board and the 'Lyme Wars' have become even more acrimonious.
What sustains this controversy?
It is important to recognise that the science of Lyme disease suffers from two major problems. First, there is no test currently available that proves the eradication of Borrelia burgdorferi, the spirochetal agent of Lyme disease, from the human body [5,6]. Conversely, there is growing evidence for longterm persistence of the Lyme disease spirochete in animal models [7-11] and humans [12-14] despite alleged adequate treatment for the disease. The second problem is that Lyme disease likes company, and over the past 20 years we have seen compelling evidence for co-infections transmitted by ticks (which have been called 'sewers of infectious disease' along with the Lyme disease spirochete [15-21]. Thus, the term 'Lyme disease' often signifies a poorly characterised polymicrobial infection with no fixed end point. This nebulous infectious disease presents a nightmare scenario for both the victim of Lyme disease and any rational healthcare provider who must deal with the complex complications of the tick-borne illness. A corollary to this nightmare is the growing recognition of possible spread of the Lyme disease spirochete by human contact [22,23].
With this background, the article by Charles Pavia [24] on current and novel therapies for Lyme disease is yet another trivialising treatise that presents inaccurate or incorrect information about this potential nightmare. In our view, the banality of the article reflects an entrenched and growing ignorance and neglect of the severity of Lyme disease, while its victims continue to suffer. Below is a partial rundown of points presented in the article with which we strongly take issue. We have listed these points in their order of appearance and appended our corresponding commentary.
2. Assertions and comments
Assertion (1): B. burgdorferi can be readily cultivated in vitro using special culture medium.
Comment (1): B. burgdorferi is difficult to culture by routine methods, and virtually no clinical laboratory can perform this basic infectious disease test [25,26]. This clinical drawback has severely limited the diagnosis of Lyme disease. A similar problem is seen with syphilis, an illness caused by the spirochete Treponema pallidum. Since this organism cannot be cultured in vitro, the diagnosis of syphilis (like Lyme disease) is supported by serological testing, prompting the observation that 'any infection for which diagnosis and assessment of treatment response depend on serologic testing is one in which clinical certainty is elusive' [27].
Assertion (2): About 20 - 25% of Lyme disease patients do not remember developing a characteristic 'bullseye' erythema migrans (EM) rash.
Comment (2): According to recent health department statistics from Texas, Connecticut and California, the EM rash fails to appear in 41-65% of Lyme disease patients, and recognition of the rash may be even lower depending on the location of the tick-bite and the awareness of the person who was bitten [28,101]. The published incidence of the EM rash also reflects a type of circular reasoning that pervades Lyme disease research: since the presence of an EM rash is the best evidence for Lyme disease, it has become the most common criterion for admission into Lyme disease studies. Since most patients in these studies have an EM rash, the incidence of the rash becomes inflated in the medical literature. The literature then perpetuates the myth that the vast majority of Lyme disease patients have an EM rash [4,22].
Assertion (3): The Lyme enzyme-linked immunosorbent assay (ELISA) is the preferred method to diagnose Lyme disease due to its sensitivity, adaptability to automation and ease of quantitation.
Comment (3): The Lyme ELISA misses at least 50% of Lyme disease cases due to the assay's insensitivity and variability with antibiotic treatment [101]. It follows that the two-tiered testing system endorsed by the US Centers for Disease Control and Prevention (CDC), which includes an ELISA screening test followed by a confirmatory Western blot, will also miss 50% of Lyme disease cases because a positive ELISA result is required to proceed to the confirmatory Western blot test [28,101]. Parenthetically, the CDC criteria were developed for surveillance of Lyme disease, not for diagnostic purposes. This is an important distinction because it is inappropriate to apply surveillance criteria to symptomatic patients whose clinical picture already suggests the presence of Lyme disease. Thus, there is currently no sanctioned, standardised, consistent serological test for Lyme disease in the US [28,101].
Assertion (4): Only motile forms (of B. burgdorferi) are considered to be viable and capable of replicating.
Comment (4): B. burgdorferi assumes different forms in different hosts [29-35]. The most troublesome is the so-called cyst form that may lie dormant in the human host, thus evading antibiotic therapy that targets replicating bacteria [29-33]. The non-replicating cyst form is undoubtedly the key to persistence of infection with the Lyme disease spirochete, and any antibiotic approach to Lyme disease that fails to recognise this pathogenic entity is doomed to failure [34,35].
Assertion (5): The Lyme disease vaccine was withdrawn due to lack of public interest.
Comment (5): The GlaxoSmithKline Lyme vaccine (LYMErix^TM) was withdrawn in the face of a class action lawsuit involving > 300 patients who claim that they developed a 'Lyme-like' illness after receiving the vaccine.
Assertion (6): Early Lyme disease is readily treatable with a 2-3 week course of antibiotics.
Comment (6): This statement is misleading for several reasons. First, 'early Lyme disease' often goes undetected due to lack of awareness of a tick-bite and absence of an EM rash [28]. Second, recent studies have shown that tick saliva carries immunosuppressive substances that allow tick-borne agents to invade tissues while paralysing the local immune response [36,37]. Thus, the Lyme disease spirochete may rapidly disseminate and become entrenched and resistant early in the disease (see below) [38-40]. Third, co-infections may alter the course of 'early Lyme disease', and these co- infections may make he Lyme disease patient more difficult to treat (see below).
Assertion (7): To date, there is no evidence for the existence of any antibiotic-resistant strains of B. burgdorferi.
Comment (7): A serious understatement. B. burgdorferi is an extremely complex organism. The Lyme disease spirochete contains at least 132 functioning genes, in contrast to T. pallidum, the spirochete that causes syphilis, which contains only 22 such genes [41]. Although B. burgdorferi may not be 'resistant' to antibiotics by conventional laboratory methods, we know that the spirochete can enter cells such as fibroblasts, synovial cells, endothelial cells and macrophages [42-47]. In these cells, B. burgdorferi becomes functionally resistant to treatment, partly due to 'camouflage' proteins produced by the organism or adsorbed from the cell and partly due to the altered morphology and replication of the spirochetal cyst form (see above) [34,40,43]. Stricker & Lautin Expert Opin. Investig. Drugs (2003) 12(10) 3
This functional resistance leads to persistent infection despite supposedly adequate treatment for Lyme disease. The immune evasion strategy of B. burgdorferi is reminiscent of mycobacterial infections such as tuberculosis or leprosy [38-40].
Assertion (8): It is unclear whether a concurrent Anaplasma or Babesia infection can influence the outcome of a standard course of treatment for Lyme disease.
Comment (8): Animal models of co-infection with B. burgdorferi and either Babesia microti or Anaplasma phagocytophila (the agent of human granulocytic ehrlichiosis) have demonstrated an altered immune response and clinically worse disease in these animals [48-50]. Similar exacerbation of clinical symptoms and resistance to treatment has been observed in humans [16,51].
Assertion (9): A single dose of doxycycline given within 72 h after a recognisable tick-bite was highly effective in preventing early Lyme disease.
Comment (9): The study that showed the alleged benefit of prophylactic single-dose doxycycline had inadequate follow up to prove the absence of clinical infection following this simple treatment [52]. Furthermore, the authors used development of an EM rash as an end point in the study. Since 41 -65% of Lyme disease patients do not develop an EM rash, the study may have missed more than half the patients who eventually came down with Lyme disease after this theoretically inadequate prophylaxis. The use of single-dose doxycycline also raises concern about antibiotic resistance following this microbiologically unsound therapy.
Assertion (10): Healthcare providers who deal with Lyme disease can be divided into two groups: 'specialists' who are often affiliated with 'large academic institutions', versus 'community- based' providers in 'private (family) practice'. The former group tends to adhere to the guidelines of the CDC and the Infectious Disease Society of America (IDSA) in diagnosing and treating Lyme disease. In contrast, the latter group tends to rely on 'anecdotal reports citing an alarming number of Lyme disease patients who are supposedly co-infected with one or more of the following: Anaplasma, Bartonella or Babesia. Such an unlikely scenario of multiple infections arouses suspicion on the authenticity of these cases and those willing to make such diagnoses'.
Comment (10): We feel that this is a very politically charged statement, featuring two issues that define the Lyme Wars. The first issue concerns the lofty 'academic specialists' who follow the CDC and IDSA guidelines in diagnosing and treating Lyme disease. We have seen that the CDC guidelines give a poor diagnostic yield for Lyme disease, since they were meant for surveillance purposes and not for diagnosis [22,101].
The IDSA guidelines were written by a panel of 12 Lyme disease 'experts', 11 of whom were research scientists with minimal clinical experience in treating Lyme disease. These guidelines have doomed thousands of suffering Lyme disease patients to a lack of therapy based on the opinions of a handful of researchers.
With this knowledge, is it any wonder that 'community-based' providers who deal with the clinical nightmare of Lyme disease have rejected the CDC/IDSA guidelines and formulated their own diagnostic and therapeutic parameters ? [53-55] Pavia raises the second issue based on this clinical dichotomy, stating that Lyme disease treatment outside the CDC/IDSA guidelines represents a provider-driven policy that impugns the integrity of the provider. The reality is that suffering patients seek out 'Lyme-literate' providers because the 'academic' researchers have abandoned them. These researchers and their followers offer nothing in the way of treatment for the suffering of Lyme disease patients other than pseudopsychiatric semantics [4,22] or meaningless labels such as chronic fatigue syndrome or fibromyalgia, which are often manifestations of chronic, poorly treated Lyme disease [56,57].
Pavia also refers to the alarming number of Lyme disease patients who are supposedly co-infected with other tick-borne organisms. Since this number is now ~ 20% or more of all Lyme disease cases [18,20,29], the alarm should have sounded long ago.
Assertion (11): The Pavia paper praises the 'highly significant' results of the study by Klempner et al. [58] that examined retreatment of Lyme disease patients who had persistent symptoms of the disease. The study claimed that it is unlikely that prolonged antibiotic treatment will offer any major benefit to symptomatic patients who are no longer infectious.
Comment (11): The study by Klempner et al. [58] has been analysed in detail elsewhere [55,102]. At the beginning of this article, we noted that one of the main problems with Lyme disease is the lack of a test that proves the eradication of spirochetal infection. Thus, we feel that the design of the study by Klempner et al. was basically flawed, since the culture and molecular techniques used in the study were insufficient to prove that patients were 'no longer infectious' [102]. Furthermore, the choice of 'prolonged' antibiotic therapy for patients with neurological disease (1 month of intravenous ceftriaxone followed by 2 months of low-dose oral doxycycline) was irrational and doomed to failure [55,102]. Consequently, the study simply shows that inadequate retreatment of chronic Lyme disease leads to inadequate results [102]. Unfortunately, because of the widespread publicity given to this article and its prestigious publisher, the flawed data has been widely used to deny care for symptomatic subjects.
Assertion (12): Pavia focuses on hyperbaric oxygen therapy (HBOT), shorter course treatment with antibiotics and evernimicin therapy as future treatment options for Lyme disease.
Comment (12): HBOT is currently being used as adjunctive treatment for chronic Lyme disease [101]. Although in theory it is effective in creating a more hostile environment for the Lyme disease spirochete, HBOT is a cumbersome procedure that probably will never be available to the majority of patients with chronic infection. The cost of multiple treatments is also prohibitive.
The Pavia paper fails to address the hepatic toxicity of evernimicin, and it is doubtful that this toxic antibiotic will ever be marketed for Lyme disease. Shorter course antibiotic therapy was the subject of a recent study [59], and this minimalist approach promises to yield more inadequately treated Lyme disease sufferers. In contrast to these impractical or potentially toxic treatment options, current and future Lyme disease therapy should focus on combinations of antibiotics that are readily available and administered in a rational manner, with monitoring of clinical and immunological parameters [53,60-62]. In this regard, it is important to remember that the current World Health Organization (WHO) recommendation for treating infection with Mycobacterium tuberculosis is a combination of two antimicrobial agents administered for 18 months, while the WHO-sanctioned treatment for leprosy is a combination of three antimicrobial agents administered for 2 years [63-65]. For a spirochete as complex and crafty as B. burgdorferi, these guidelines are probably closer to what is needed for the eradication of chronic spirochetal infection in Lyme disease. As stated previously, recognition and evaluation of human transmission of Lyme disease will also play a role in developing effective treatment strategies [22,23].
3. Expert opinion and conclusion
In conclusion, Lyme disease remains a public health threat of major proportions. Continued trivialisation of this complex spirochetal illness only serves to augment the threat by legitimising ignorance of Lyme disease and neglect of Lyme disease patients. Until this trend is reversed, we will continue to see thousands of patients suffering at the hands of the medical establishment and desperately seeking care from the few providers who will listen. As modern medicine rockets into the 21st Century, this ostracism of suffering patients and persecution of dissenting healthcare providers can no longer be tolerated. For their part, Lyme disease patients and their providers must learn from the AIDS experience, where activism brought change when it was perceived that nobody was listening. And as more people listen, the 'Lyme Wars' may finally reach an end.
Acknowledgements
The authors thank Robert Bransfield, Joseph Burrascano, Kathleen Dickson, David Dorward, Brian Fallon, Andrea Gaito, Julie Gerberding, Nick Harris, William Harvey, Barbara Johnson, Anne Kjemtrup, Robert Lane, Kenneth Liegner, Robert Lull, Daniel Moore, Scott Morrow, Steven Phillips, Walter Prehn, Lynn Shepler, Virginia Sherr, Harold Smith, Gerald Sugarman and Edward Winger for helpful discussion. We also thank Pat Smith of the Lyme Disease Association, Phyllis Mervine, Lee Lull, Peggy Leonard and Barb Barsocchini of the California Lyme Disease Resource Center and Karen Forschner of the Lyme Disease Foundation for continuing support. This article is dedicated to the memory of Paul Lavoie.
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LINDER S, HEIMERL C, FINGERLE V, AEPFELBACHER M, WILSKE B: Coiling phagocytosis of Borrelia burgdorferi by The Lyme Wars: time to listen 6 Expert Opin. Investig. Drugs (2003) 12(10) primary human macrophages is controlled by CDC42Hs and Rac1 and involves recruitment of Wiskott-Aldrich syndrome protein and Arp2/3 complex. Infect. Immun. (2001) 69:1739-1746. 46. GEORGILIS K, PEACOCKE M, KLEMPNER MS: Fibroblasts protect the Lyme disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J. Infect. Dis. (1992) 166:440-444. *Demonstration of functional resistance of intracellular B. burgdorferi to ceftriaxone. 47. BROUQUI P, BADIAGA S, RAOULT D: Eukaryotic cells protect Borrelia burgdorferi from the action of penicillin and ceftriaxone but not from the action of doxycycline and erythromycin. Antimicrob. Agents Chemother. (1996) 40:1552-1554. 48. THOMAS V, ANGUITA J, BARTHOLD SW, FIKRIG E: Coinfection with Borrelia burgdorferi and the agent of human granulocytic ehrlichiosis alters murine immune responses, pathogen burden, and severity of Lyme arthritis. Infect. Immun. (2001) 69:3359-3371. 49. ZEIDNER NS, DOLAN MC, MASSUNG R, PIESMAN J, FISH D: Coinfection with Borrelia burgdorferi and the agent of human granulocytic ehrlichiosis suppresses IL-2 and IFN gamma production and promotes an IL-4 response in C3H/HeJ mice. Parasite Immunol. (2000) 22:581-588. 50. MORO MH, ZEGARRA-MORO OL, BJORNSSON J et al.: Increased arthritis severity in mice coinfected with Borrelia burgdorferi and Babesia microti. J. Infect. Dis. (2002) 186:428-431. 51. KRAUSE PJ, TELFORD SR 3rd, SPIELMAN A et al.: Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. JAMA (1996) 275:1657-1660. *Influence of coinfection on Lyme disease severity and duration. 52. NADELMAN RB, WORMSER GP: Single-dose doxycycline for the prevention of Lyme disease. N. Engl. J. Med. (2001) 345:1349-1350. 53. BURRASCANO JJ: Lyme disease. In: Conn's Current Therapy. WB Saunders Company, Philadelphia, USA (1997):140-143. **An important review of Lyme disease diagnosis and treatment. 54. LIEGNER KB, KOCHEVAR J: Guidelines for the clinical diagnosis of Lyme disease. Ann. Intern. Med. (1998) 129:422-423. 55. BRANSFIELD R, BRAND S, SHERR V: Treatment of patients with persistent symptoms and a history of Lyme disease. N. Engl. J. Med. (2001) 345:1424-1425. *An abbreviated critique of [58], the flawed study of long-term antibiotic therapy for Lyme disease. 56. LAWRENCE C, LIPTON RB, LOWY FD, COYLE PK: Seronegative chronic relapsing neuroborreliosis. Eur. Neurol. (1995) 35:113-117. 57. FRASER DD, KONG LI, MILLER FW: Molecular detection of persistent Borrelia burgdorferi in a man with dermatomyositis. Clin. Exp. Rheumatol. (1992) 10:387-390. 58. KLEMPNER MS, HU LT, EVANS J et al.: Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N. Engl. J. Med. (2001) 345:85-92. 59. WORMSER GP, RAMANATHAN R, NOWAKOWSKI J et al.: Duration of antibiotic therapy for early lyme disease. A randomized, double-blind, placebo controlled trial. Ann. Intern. Med. (2003) 138:697-704. 60. STRICKER RB, WINGER EE: Decreased CD57 lymphocyte subset in patients with chronic Lyme disease. Immunol. Letters (2001) 76:43-48. *Initial description of an immunological defect in chronic Lyme disease. 61. STRICKER RB, BURRASCANO J, WINGER EE: Longterm decrease in the CD57 lymphocyte subset in a patient with chronic Lyme disease. Ann. Agric. Environ. Med. (2002) 9:111-113. 62. STRICKER RB, WINGER EE: Normalization of the CD57 natural killer cell subset associated with prolonged antibiotic therapy in patients with chronic Lyme disease. Clin. Immunol. (2002) 103:S117-S118. 63. SMALL PM, FUJIWARA PI: Management of tuberculosis in the United States. N. Engl. J. Med. (2001) 345:189-200. 64. SHAW IN, NATRAJAN MM, RAO GS, JESUDASAN K, CHRISTIAN M, KAVITHA M: Long-term follow up of multibacillary leprosy patients with high BI treated with WHO/MDT regimen for a fixed duration of two years. Int. J. Lepr. Other Mycobact. Dis. (2000) 68:405-409. 65. GOTO M: Chemotherapy of leprosy: theoretical basis of new guideline in Japan. Nihon Hansenbyo Gakkai Zasshi (2001) 70:151-155.
Websites 101. www.geocities.com/HotSprings/Oasis/6455/lyme-links.html - Lots of links on Lyme disease - over 12,000 categorised links on Lyme disease (2001). **The most extensive collection of Lyme disease references in existence. 102. http://www.ilads.org/stricker.htm - PHILLIPS SE, BRANSFIELD R, SHERR VT et al.: Evaluation of antibiotic treatment in patients with persistent symptoms of Lyme disease: an ILADS position paper (2003). **A comprehensive critique of [58], the flawed study of long-term antibiotic therapy for Lyme disease.
Affiliation Raphael B Stricker MD1 & Andrew Lautin2 Author for correspondence 1Department of Medicine, California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA, USA Tel: +1 415 399 1035; Fax: +1 415 399 1057; E-mail: [email protected] 2Department of Psychiatry, New York University School of Medicine, New York, NY, USA
Posts: 503 | From Maryland | Registered: Oct 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Here, here TF and others!!
Dr. B told me that immediately after he testified before Congress, the IDSA guys said to him, "We're not through with you!" And right after that the state Medical Board tried to take his license away. He won that case, which was a miracle. Then they tried again to to take his license away---yet another long legal battle. It is nothing short of a miracle that he won that one, too.
These guys were (and are) out for blood.
And Dr. B is doing research now. There was no way he could do it when he was in practice; he was swamped with the sickest of the sick patients. The research he is doing now is more complex than testing his guidelines. Stay tuned (as he often says).
Posts: 3792 | From around | Registered: Mar 2008
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Camp Other
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Rumigirl,
How much do you know about the research Dr. B is doing now - can you tell us anything? Who is helping him?
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FuzzySlippers,
The paper you posted was published in 2003, and in it the authors cited one of their own papers regarding the possibility of human transmission (23. STRICKER RB, MOORE DH, WINGER EE: Clinical and immunologic evidence for transmission of Lyme disease through intimate human contact. (Abstract, submitted).)
Do you know what happened to the paper now and where it's been published?
A little research turned out it was supposed to be in a 2004 issue of the Journal of Investigative Medicine, but when I run a search on the journal using:
golly, I don't know what happened to the paper now. I had pasted the article into a research folder here at home and didn't even keep the original links.
I'm having some issues with my eyes today. If they decide to cooperate a little later, I'll have a crack at trying to track it down for you. If you don't hear from me, that means that my eyes are still in rebellion from treatment. lol
By the way, have you tried having a look at the ILADS website? The have links to not all, but some published articles.
Also, since you mentioned that reading is difficult for you at the moment due to your symptoms, perhaps you'd get useful information from viewing/listening to the ILADS presentations and slide shows given by ILADS members at the IDSA Guidelines Review Hearing.
ILADS also submitted a veritable tome of scientific rebuttal information to the IDSA Guidelines Review Panel. I'd love to get my hands on it and read it myself. I honestly don't know whether it's possible to get copies of it or not.
Since the IDSA Guidelines Review process was a result of the charges placed against IDSA by Attorney General Blumenthal, presumably, all submissions filed during the public comment phase would be public information and would be covered under the United States Freedom of Information Act.
In addition to perusing the ILADS website, you might also find additional sources at the Turn The Corner website and the websites of CALDA, Lymeinfo.net. The Canadian Lyme Canadian Lyme Disease Foundation website also has a good medical research page.
Of course, there's the ubiquitous Pubmed, Google, etc. And, Pam Weintraub's book, "Cure Unknown," is fully sourced and will help you with some of your questions, I think.
Since this topic is so complex, one has to spend a fair amount of time reading information was many sources. That's not an easy thing for one to do when one is feeling sick.
Anyway, hope this helps.
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
doh! I forgot to also mention that Lymenet has a Medical Abstracts section. It's got some good information that might help save you some time as you continue to research.
Methinks I might change my name to FuzzyBrain. lol
Posts: 503 | From Maryland | Registered: Oct 2007
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
For me what stands out is the word "guidelines". This is not the holy grail of lyme for everyone and there needs to be variations and flexability in tx as everyone is different.
Alot of Dr. B.'s recommendations work/ed for me and some did not. Specifically his recommendations re; cardio during tx.
Take what works for you and leave the rest. It is okay to modify the "guidelines" and allow for some individual variations in tx.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Katrinab, did we chase you away? Hope not.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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momlyme
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I think one of the most important thing to remember is that guidelines have to be flexible. Our bodies, individual toxins and species are different and a therefore our treatment plans must be individual.
Most doctors don't see an array of symptoms fitting into one of their cookbook cures: "Take two asprin and call me in the morning" does not work for complex disease.
The conventional medical community has been treating symptoms so long they don't know how to find the source of illness. They are so used to looking inside their own "specialties" they have forgotten that the body is a whole.
My own toxic soup that lives inside my body is not the same as my son's or my neighbor's... even though there are similarities, each person is different.
The disease is like an onion... or GiGi's anaolgy of Dolls that nest within each other.
Molds, metals, bacteria, viruses... and who knows what else-- the ideal LLMD must be able to diagnose the toxic soup and treat as each layer appears. That means throwing out the idea of a set in stone 'one size fits all' treatment... and customizing to fit the individual.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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