I have done a search on him, but the search engine is not working.

I know we normally do not use doc names, but steere is known.
hope this is ok.

Is he the doc who does not beleive in chronic pain?
Is he worth seeing? I would appreciate ANY info on him.
You are welcome to email me if you are not comfrotable posting about a doc.

Thanks

quote:

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Originally posted by BJG:

Is he the doc who does not beleive in chronic pain?
Is he worth seeing? I would appreciate ANY info on him.

BJG

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More info: http://www.ilads.org/

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Thanks to these who corrupted themselves and started proclaiming false truth about Lyme disease the effort of healthcare presently is going towards protecting it from Lyme patients instead finding cheaper cure or treatment.

I know this is an uncomfortable post.

I thank those who know me and will respond.
Again, I went to the search, but it is not working.

I am afraid my relative doc is looking at Lyme thru the lens of a traditional doc, which could cause more problems than help, but I do NOT want to close any doors.

Again I am sorry this post is touching.

Besides Dr B guidlines, is there another piece of info that a traditional doc would "get" and respect?

Besides Dr B guidlines, is there another piece of info that a traditional doc would "get" and respect?

"Lyme Disease Update: Science, Policy & Law"

by Marcus A. Cohen

Forward by Brian Fallon, MD
Preface by Amy Tan, NY Times Bestselling author
Published 2004
178 pages
softcover book

Ordering info I believe is on the LDA website: www.lymediseaseassociation.org

I paid $8.00 for mine at a lyme fundraiser. IT IS WORTH EVERY CENT!

If you are being sent in the "other direction" purposely then my guess is that they won't bother reading something so comprehensive...but it would be excellent for you to order and read. I have 3 copies; my pediatrician is going to borrow it and so is my regular doctor. They are both supportive of our lyme/co-infections and happy with our treatment/progress. But that's because they are open-minded...key word there.

(Bumsteere) Run away run away FAST BJG
He's muddied the waters so much thats why people are on here looking for info on Lyme.

I cant even believe Iam talking about this guy.

And I cant believe you even asked about him.

that is one horror movie that should be made.

you could even call it 'seeing dr steere'

BJG,

For information on steere,et.al, please see
sci.med.diseases.lyme
When there, do theses steps:
1. Select 'advanced search'
2. In the field for 'author,' enter,
the name, 'Kathleen'
3. In the field for group, enter sci.med.diseases.lyme
4. In field for 'Subject,' enter RICO

Ignore adhominem attacks, and view the facts.

You'll also find a copy of the RICO complaint w/rt lyme disease on the site for the Department of Justice, and the Food and Drug Admin.

I do not think I had been diagnosed and on Lymenet when the Dr S stuff was going on.

Again, I did a search, it is not up and working.

Thank you for all of your posts.
Many of the sites you all suggested, I have sent to a well intentioned, although ignorant to Lyme, relative.

{ How did you send this post up? I am slow}

i understand about protecting the "good guys"

We are afraid of being savagely attacked and ruined by the Mengeles who control Lyme Disease treatment. It has happened several times.
www.geocities.com/hotsprings/oasis/6455/lyme-links-html

Sorry, apparently that site isn't available anymore.

quote:

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Originally posted by Aligondo Bruce:
I have no problem responding to this question. What are you guys so worried about? We have a right to free speech in this country, especially when it comes to a person who is publically involved in an issue.
As a lyme patient, seeing Allen Steere would be like a jew visiting Dr. Mengele. He's a corrupt human being.

---

The political aspect of it is that for patients being sick with Lyme Disease is an unmitigated disaster both in terms of getting treatment for what is ultimately a fatal disease and in terms of having a totally devasted life. The doctors put you through hell, cost you a fortune and you are no better. Ducks like Steere with their combination of ignorance, arrogance and stupidity and many suspect in his case of having sold out to the insurance racket are the major reason we are in this mess today..

If you had a bleeding ulcer in your stomach or duodenum, would you go to a doctor who refused to acknowledge and indeed had never even heard of the fact that 90% percent of all such ulcers are caused by h. pylori? If your answer to that question is yes, then by all means go see Alan Steere. If however you want somebody who will diagnose your problem accurately, and even prescribe treatment that might work, the odds are you would be much better off going to somebody else. If there is such a thing as bad karma, after all the misery he has brought into the world, Dr. Steere is in big trouble already.

quote:

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Originally posted by Thomas Parkman:
Ducks like Steere with their combination of ignorance, arrogance and stupidity and many suspect in his case of having sold out to the insurance racket..

---

Does anyone know what is Steere's connection to the insurance companies?

So far I don't see a connection. But I do see a connection between him and the drug companies though.

And for sure the drug companies have an interest in keeping a lid on Lyme.

On the other hand, the insurance companies are reacting no differently to Lyme than they are to any other long-term costly disease.

They never wanna pay out.

And from what I can tell, Lyme is not that expensive compared to many other diseases such as cancer, ALZ, Parkinsons, MS, AIDS, etc.

The problem Lymies face is that it's doctors OUT-OF-NETWORK that prescribes drugs which the insurance companies can decide at their leasure at any point to no longer cover.

And this is no different than if a Parkinsons patient is prescribed drugs by an OUT-OF-NETWORK doctor. In that case too the insurance company may choose to stop paying out at any time.

I'm convinced that it is indeed in the insurance companies utmost financial interest to spread the "truth" about Lyme. Cause in the end they'll save billions of dollars due to the associated reduction, and eventual elimination, of misdiagnosed MS, ALZ, Parkinson, lupus, CFS, etc.

And it is this very same argument that is causing the drug companies to do everything in their power to keep a lid on Lyme. Cause they have every interest to keep the misdiagnosis going strong.

A Parkinsons patient, an MS patient, etc are wonderful revenue pigs to the drug companies who'll be selling drugs to these patients for the rest of their lives.

I admit I don't know where Steere and gang gets their research money from. I know they get some from the NIH. But I can imagine that drug companies also supply funding to Yale one way or the other, or indirectly. I'm also wondering who's on the board of directors of Yale medical school and who their connections are.

Does anyone have insight into these sorts of things?

I'd be so interested in learning all this.

Mule

I didn't have swollen knees so his cohorts doubted I had Lyme even though I already had a positive test. They managed to lose my test results and then made me pay for another test (also positive).

They said my knees looked fine and they had no idea why I was having problems with fatigue, confusion, neurological problems etc. I suggested the problems were due to Lyme and they though I was crazy. Apparently they also thought I was deaf since they yelled at me and told me that if my medication wasn't working I needed to stop taking it.

They suggested doing a spinal tap. I cancelled my next visit and found an LLMD who doesn't shout at me or insult me. He listens, he changed my meds, I'm getting better.

quote:

---

Originally posted by BJG:
Hey
Thanks, you all confirmed what I thought I had heard/read.

Besides Dr B guidlines, is there another piece of info that a traditional doc would "get" and respect?

Thanks
B

---

(The ILADS guidelines are similar to Burrascano's guidelines and Dr B did have a lot to do with the ILADS guidelines.)

The Lyme Disease Association also has the Lyme Disease handbook bu Marcus Cohn, summarizing pertinent, peer-reviewed literature on Lyme, supporting the approach of ILADS and other Lyme literate doctors who diagnose on the basis on clinical symptoms and provide open-ended treatment based on the patient and not on an arbitrary length of time, like 10 days.

Much of the peer-reviewed literature above runs counter to the peer-reviwed literature that Steere has written or others of his ilk cite.

The basic point to present to any doctor who is one-sided against open-ended treatment: There are two sides, and each are supportable with peer-reviewed literature. If you have read one that supports the ELISA as diagnostic and 10 days as sufficient, be balanced and read the peer-reviewed literature that views that approach as not just wrong by harmful.

So this is the choice and risk you make with regard to your patient:

If you go with the 10 day approach only, you will have to declare him/her cured, no matter what symtoms persist or worsen.

If, however, you go with the approach based on clinical judgment and open-ended treatment, you are willing to give an arsenal of antibiotics for as long as the patient's symptoms persists. You continue to treat until the the patient gets better and can function, which can be two months, or two years, or life.

If you decide to go and see him,presumably for joint related problems. PLEASE ask him what ever happened to the original "lyme " kids in old Lyme Ct.

quote:

---

Originally posted by BJG:
Hi
I have been contacted by a family member/doc
who suggests I see Dr Steere.

I have done a search on him, but the search engine is not working.

I know we normally do not use doc names, but steere is known.
hope this is ok.

Is he the doc who does not beleive in chronic pain?
Is he worth seeing? I would appreciate ANY info on him.
You are welcome to email me if you are not comfrotable posting about a doc.

Thanks

BJG

---

You're welcome to read the following post and decide for yourself if Dr. Steere or any of his colleagues are worth seeing:
http://flash.lymenet.org/ubb/Forum1/HTML/009785.html

Linda

I wonder what happened to the ORIGINAL group, not some randomized, manipulated, unable to contact the really bad or dead ones group.

The problem with papers is that you can tilt the conclusions any way you want with some cleaver wording and study group selection criteria.

It is amazing what a single word in a 6 page paper can do. The "Pro's" who write this type of crap all the time are experts at this type of thing. I got so fed up with this type of science that I left the paper writting community...

Please send me a copy if you don't mind

email [email protected]

So, instead of sending you the critique, I am posting it here. It is shorter than the original article, points out a lot of those defects, and might help some of the newbies understand what is going on with the publishing of lyme articles in scientific journals.

I don't suppose it is restricted to lyme, either. You, being in the field, would undoubtedly do a better critique, but as you can see, even a layperson can find defects, the lyme science is so sloppy by Steerites wishing to prove their point.

______________________________

FOLLOW UP: LYME, CONNECTICUT PATIENTS......10 TO 20 YEARS LATER

Lyme disease became a clinical entity in the United States as a result of investigations into a number of unusual arthritis cases among children in Lyme,Connecticut, in the 1970's. Now, an article in the Journal of Infectious Diseases (2001; 181: 453-60) describes the long-term impact of Lyme disease based on a follow-up of those patients 10 to 20 years later.

You will be pleased to learn that the overall current health status of each patient group was good. This is another in a series of articles telling us that Lyme disease isn't serious. If this kind of research had a theme song, it would be,"Don't worry, be happy!"
"How can this be?" you ask. "lt doesn't describe what is happening to me or others I know." In Lyme disease support groups, patients have had eye, knee, and heart operations. Some members of support groups are in wheelchairs. Other members are still getting treated years later to fend off the worst symptoms. When treatment stops, the symptoms return. A man in his 40's has dementia. Some people are no longer able to work. However, the worst outcomes do not seem to get into print, and it is hard to avoid the conclusion that science can be very subjective.... depending on who is doing it.

The Lyme, Connecticut, follow-up was carried out by researchers at Tufts University and the New England Medical Center in Boston. They included Alien Steere along with Robert Kalish, Richard Kaplan, Elise Taylor, Lisa Jones-Woodward, and Kathryn Workman.
Here is what they say:

"To determine the long-term impact of Lyme disease, we evaluated 84 randomly selected, original study patients from the Lyme, Connecticut, region who had erythema migrans, facial palsy, or Lyme arthritis 10-20 years ago and 30 uninfected control subjects. The patients in the 3 study groups and the control group did not differ significantly in current symptoms or neuropsychological test results. However, patients with facial palsy, who frequently had more widespread nervous system involvement, more often had residual facial or peripheral nerve deficits. Moreover, patients with facial palsy who did not receive antibiotics for acute neuroborreliosis more often now had joint pain and sleep difficulty and lower scores on the body pain index and standardized physical component sections of the Short-Form 36 Health Assessment Questionnaire than did antibiotic-treated patients with facial palsy. Thus, the overall current health status of each patient group was good, but sequelae were apparent primarily among patients with facial palsy who did not receive antibiotics for acute neuroborreliosis."

The research patients were selected from a pool of 582 people entered in the initial studies of Lyme disease at Yale from 1976 through 1983.This is a 14% sample of the original group. A larger number, 22%, were excluded because they had been lost to follow-up for reasons of death or moving away from the area. About half of the 152 patients contacted declined to participate, but about half of the decliners did agree to fill out a questionnaire. Most of the study patients, when first enrolled 10 to 20 years ago, were CDC positive, although not all of them were treated. Nearly all later obtained treatment, but some obviously had missed their window of opportunity because now they continue to have health problems. Does this sound like a good outcome to you....?

58% of the facial palsy group report memory problems

38% of the Lyme arthritis group now have chronic or episodic knee pain

23% of the facial palsy group now has residual deficits of facial nerve function, as determined by physical examination.

To evaluate and find meaning in this article requires a combination of statistician, experimental design expert, Lyme-literate physician or researcher, and logician. But even to a layperson reading it, several things leap out."Subtle" and "mild" are favored adjectives for symptoms described by these researchers. How could chronic knee pain be subtle? Is degenerative arthritis a mild condition? Also, the control group was small and was said not to differ in health problems from the Lyme patients - a conclusion that is hard to believe.

The control group they used was composed of friends or neighbors of the patients in this endemic area. One of these volunteers was found to be CDC positive! It seems possible that others in the control group may also have had undiagnosed Lyme. Without a reliable test, we will never know.One begins to wonder about the concept of control group. No information is given as to current treatment status. Nor are we told how long the patients were treated over those intervening years.The patients with continuing problems are said to have post-Lyme disease syndrome, not active disease. No proof of this is offered just the opinion.

The article states: ``The pathogenesis of post-Lyme disease syndrome is unclear. This syndrome is similar to fibromyalgia and CFS [chronic fatigue syndrome]. A higher lifetime prevalence of pre-morbid psychiatric illness or stressful emotional or physical events, including certain infectious illnesses, has been noted in patients who subsequently develop fibromyalgia or CFS. Perhaps diffuse or prolonged CNS [central nervous system] infection with B. burgdorferi in susceptible people triggers immunologic or neurohormonal processes that perpetuate this post-infectious syndrome. However, we do not know whether this is a direct effect of CNS infection or an indirect effect of a particularly stressful event. People who do not have this underlying susceptibility, those who are treated promptly with antibiotics or children in general may be less likely to develop subsequent fatigue, pain, or psychological distress."

These are fighting words to people suffering from such ailments, and they raise the blood pressure of Lyme patients receiving "psychological" explanations from doctors who don't take their illnesses seriously. Apparently, pop-psychology is more appealing than germ theory to some workers in science and medicine.

The researchers have lumped together people who got early treatment, late treatment, and no treatment, and compared them to a suspect control group. This conglomeration in the whole is then used to demonstrate a good outcome. Furthermore, they don't specify when active infection stops and post-Lyme syndrome begins. When, one wishes to know, do people who get no treatment or late treatment arrive at the post-Lyme condition? Does any amount of treatment at any point in time, whether it removes symptoms or not, transfer a patient automatically to the post-Lyme disease category?

The whole concept of post-Lyme disease is ridiculously fuzzy and unaccompanied by any objective proof. lt is interesting to note that most of their patients with "post-Lyme disease syndrome" did not fulfill the complete criteria for chronic fatigue syndrome or fibromyalgia.

Another aspect of this study that attracts attention is the current antibody status of these patients:

28% of the EM group are still IgG positive

45% of the facial palsy group are still IgG positive

63% of the arthritis group is still IgG positive.

The study states that current seropositivity is correlated with lack of antibiotic treatment early in the illness, but does not predict current symptoms.

The article concludes with a comparison of other studies of this type, which are said to be consistent in reporting symptoms of post-Lyme disease in antibiotic-treated patients, particularly if treatment was delayed after the onset of symptoms. The emphasis in all is on the post-infectious nature of the symptoms and the "good" outcomes, in which control group symptoms were not statistically different.

Dr. Nancy Shadick and others carried out one of these studies on Nantucket Island. The journal article, published in 1999, states that,"Because persons with previous Lyme disease exhibited no sequelae on physical examination and neurocognitive tests a mean of six years after infection, musculoskeletal and neurocognitive outcomes seem to be favorable. However long-term impairment of functional status can occur." Yes, you read that right. It is definitely contradictory.
Upon reading the entire article, one finds other peculiarities: persons who did not have Centers for Disease Control (CDC) positive tests were enrolled as controls in this endemic area (a category which would include a lot of Lyme patients);some patients were still being treated; 37% reported a previous relapse; 36% reported continuing symptoms despite previous treatment-early neurologic dissemination correlated with persistent symptoms and with longer duration before treatment was received. Yet, these people are described as having had "previous" Lyme disease, not current disease.

The references cited in all these studies are predictably heavy on Steere articles and reference each other to such an extent that it appears to be a coordinated effort. Could these studies be repeated by other people and arrive at quite different conclusions? It seems likely. The simplest, most commonsense explanation for persisting symptoms is persisting infection. Like syphilis, if left untreated in early stages, late stage Lyme may be treatable but difficult to cure. Why conjure up a new syndrome instead? Science should be as complicated as necessary but not more complicated.

The greatest irony in the article that describes the Lyme, Connecticut, follow-up is a final discussion about sources of bias. It does not include any bias that comes from the assumption of the post-infectious nature of persisting Lyme disease symptoms. Also, treatment practices in the 70's and early 80's are compared with those of today, and the authors state that,"...some patients remained untreated for years, which would be rare today,"and"...antibiotic treatment of those patients was often less than is recommended today."

Many readers will vigorously question both conclusions. Patients who are not CDC positive on tests are still being denied treatment. In some states, there are no doctors who will treat or report Lyme disease cases. The on-going persecution of doctors is guaranteed to put more patients into the delayed treatment or no treatment category. In addition, antibiotic treatment for the early Lyme, Connecticut, cases, when given, was most often for 10 to 14 days. The new IDSA (Infectious Diseases Society of America) guidelines (with Dr. Steere as a co-author) now recommend 14 to 21 days for early cases or 14 to 28 days in cases of acute neurological disease or arthritis. Even treatment for late neurological disease is only recommended for 28 days. In other words, treatment by the Steere group has really not changed much.

This kind of research will make you skeptical of science. If such articles keep getting printed in important journals, how accurate is the other material they print? Comparing the results of this study with the reality of Lyme disease experienced in "chronic" cases may make you think that there must be a parallel universe. Maybe, if we could all go there, we would all have good outcomes with minimal treatment.

(From Spotlight on Lyme newsletter, May/June 2001)

The situation for Lyme patients is not the same as it was, although I have never visited Dr. Steere. Although I'm still getting started in the search, I've been shocked at how much more understanding doctors have become. There aren't many like this, but the situation is no longer hopeless. Even more important, the camps are not so black and white anymore.

Here's what I would do if I were starting out again.

Call Igenex labs in Palo Alto, California, see if there's a way to get low cost testing on your own, without a doctor.

Call the Lyme Foundation, ILADS, and Columbia University's chronic Lyme clinic, and ask for recommendations. Call local Lyme doctors, and instead of asking if they do all of Dr. B's protocol, ask if they will treat Lyme and the co-infections. If they say yes, they may be more sympathetic than you think.

Try and get different doctors to help you with different aspects of your treatment, instead of relying on just one person. For example, I now have a primary care physician who won't treat Lyme, but will write referrals for anywhere I want to go. I am blessed with a neurologist (also in my insurance network!) who can't treat Lyme, but will say that I absolutely do not have MS or ALS. In two weeks, I will visit a doctor who used to be very conservative, but now says that if you come in with co-infections, he'll treat them.

Most important, remember that there is a LOT of money involved in this. An LLMD can cost up to $750 a visit. Once you pay that, you'll be much less likely to keep shopping around. You increase your chances of being taken seriously and getting the right treatment if you do tons of research first, and know exactly which symptoms you have, and what the strongest treatment is. I've been shocked to discover that my Lyme and co-infections respond better to some new, strong drugs on the market, than to a combination of weaker ones.