If you send it back it can and will be used against you! The insurance companies (and future ducks) would LOVE to see you diagnosed with one of the other conditions to save them big bucks. If you return it and "he" says you never had Lyme, or it has been treated, etc. you will be marked for life with that diagnosis. Unfortunately, he has the power to do this to you and the insurance companies eat it up! If you try to fight it after the fact, you will be referred out as a mental/emotional case. Trust me, please. If you have ever listened to one thing I have said, please listen now.

I don't know how well you know this duck...but he is famous for making Lyme folks miserable. Warning, beware of this duck!

I can't tell you what to do. I REALLY wish I could in this situation! I REALLY wish I could! Since I can't, I will offer my best advise, and hope you will listen to me.

If I was there I would rip that form out of your hand (politely of course on this action), stomp on it, kick it in the mud, burn it or use it for toilet paper. Then mail it back to them. This is a bad situation. BAD BAD!

I would also refuse to go to him and explain to your doc that you will pass on this referal. I will bet your doc has simply been drawn in to the hype and is not intentionally trying to hurt you. This duck sounds good on paper to someone not familiar with Lyme, but don't you believe it! You have already learned enough to see how bad his literature is, for which I am VERY proud of you! But PLEASE forget even going to this duck. Lymies can be hurt by this duck and have been.

PLEASE< PLEASE< PLEASE don't go. And you don't see me react this strongly to many posts. I don't usually like to "beg". But in this case I will.

But of course, do as you wish...it is your decision. I am choking as I say this! (Oh, please don't let her do it, please)

quote:

---

Originally posted by rosespetal:
I made an appt with Siegal a bit back, requested by my Rheumatologist, and was told to fill out what came in the mail, and return it back after I complete it. He was "THE ONE" to see about Lyme and is a SUPPOSED expert in this case. The 'study packet' I recieved was about Chronic Fatigue Syndrome, and was approx 15+ pages. Throughout the whole packet, nothing was mentioned regarding a tick bite or anything Lyme related, as was my reason for making my office visit. I continued reading this packet, only to find mental status questions carefully worded, and some contradictory, mainly grasping onto a patients emotional or lack of status, rather than whole hearted bodily symptoms. Along with this intersting study, was a brochure about lyme disease, a very brief and biased one. It is informative, for people who have suffered from lyme, with symptoms that DON'T respond to antibiotics, but leaves a BIG hole for those who do respond. It also stated that most 'chronic lyme' is due to inflammation of tissues etc, and will resolve after under 6 mos without antibiotics, rehabilitation is the key. It then goes onto fibromyalgia taking place of active lyme. It states many normal people tested + for lyme disease will tset + without having the disease. Its a false +, and that tested often enough, sooner or later a + result will show up even in healthy non infected people (I should HOPE he's talking EIA!) It states Lyme Disease is made up on the basis of a false +, and it's no wonder patients don't improve, the patient did not have LD in the first place. It does have some 'true' facts regarding the tests, why some really have lyme but the tests are - etc, but I find it biased towards those people who DO find abx helping their symptoms, with that nothing is mentioned. I am curious to find can antibiotics soly help with inflammation with no disease?? If that were the case I would guess people with RA would be lubed up on them continously. I am amazed, and disappointed that my Dr, that I actually had some 'faith' in, wants me to goto this duck, and she will be recieving a copy of my booklet I got, along with a copy of this hidden mental status to blame chronic fatigue, fibro or whatever, on LD.
My report is finished lol. Is that amazing??
-Michelle

---

This QUACKERY is truly amazing; unimaginable! The motive is beyond me! I hear all these stories as bad or worse than mine- the real sad thing is, it's not really individual quackery, I believe, but institutionally coerced and sanctioned quackery, imposed by the corporate dictatorship. We need to keep up the activism! Somehow!....

" Myths and facts about Lyme disease" by Leonard"It's all in your mind" Sigal

Cleve Clin J Med 1997 April, 64(4):203-209

"Lyme disease has taken hold in the imagination of the general public and
physicians alike. Although the disease is real, the diagnosis is often
false. Patients demanding an explanation for feeling out of sorts, and
physicians too willing to oblige them with improper use of serologic tests
and useless therapies both foster a mythology that conscientious
physicians should try to combat. This article debunks the myths and
presents the facts."

(Leonard's definition of improper serologic tests are any tests that are
positive for Lyme disease. Leonard is a rheumatologist and doesn't want to
lose any patients.)

Listen to what happens when Leonard dabbles in psychiatry.

The American Journal of Medicine, April 24, 1995, Vol. 98(4A)
Leonard "I don't get it" Sigal

"Some
clinicians still do not recognize Lyme disease when they see it and do not
consider it when appropriate."(Duh!)" Others recognize the disease but
use drug regimes that are inappropriate in light of current knowledge.
Even more anxiety is produced when a Lyme disease counterculture
is willing to diagnose Lyme disease when others
will not. A seed of doubt concerning the family doctor and the medical
establishment is planted and takes root.
"The absence of an official source .....and the presence of a readily
available counterculture accentuating doubt and apprehension increase
anxiety. The news media in the New York metropolitan area and elsewhere
were quick to identify Lyme disease as a major story. However, the goal
of the media is not always to be a source of education and objective
facts."(I'm not making this up)"Thus, reports emphasizing personal
tragedy, often not factual and not corroborated by unbiased sources,
reinforce confusion and anxiety. Communities organized into support
groups disseminate a mixed product of information and misinformation.
"Many of the endemic areas where anxiety about Lyme disease is
greatest comprise some of the most recently developed communities. Many
of the inhabitants are recent emigres from New York city who are being
told that they can get Lyme disease in their backyards and that the risk
from the ' wilderness'
includes a nearly invisible 'bug' against which there is seemingly no
defense. Previously the only arthropod about which they were concerned
was the cockroach! In escaping from the crime and crowding of the city,
they have exchanged one danger for another, The assault on the concept of
'your home is your castle' does obvious damage to their security. We must be
aware of the mythology
surrounding Lyme disease in our communities and counter with the facts and
the results of scientific studies."

Pseudo-Lyme written by a Pseudo-Lyme expert.

Repost from the dejanews archives--Remember, Leonard "I feel your pain" Sigal
is a board member of the ALDF and is a rheumatologist that tesifies for
insurance companies against LLMD's. He is a storm trooper against Lyme
treatment and diagnosis. He would lose too many patients. He loves to hear
himself talk.
___________________________________
By the person who has said the LD vaccine is 100% effective!

Oh, the humanity!

Rita

PSEUDO-LYME DISEASE

Leonard H. Sigal, MD

From "Bulletin on the Rheumatic Diseases"; a Publication of the ARTHRITIS
FOUNDATION; Vol.44, No.8, December 1995

Retrospective reviews at two Lyme Disease (LD) referral centers showed that
most patients evaluated did not have LD (1,2). Among those seen at our
center for possible LD have been patients with ankylosing spondylitis,
rheumatoid arthritis, osteoarthritis, lupus, anti-cardiolipin antibody
syndrome, multiple sclerosis, amyotrophic lateral sclerosis, Alzheimer's
disease, brain tumors, and various other non-LD disease. On the other hand,
by careful clinical and laboratory analysis we have identified LD in
patients previously thought to have multiple sclerosis, senile dementia,
gout, rheumatoid athritis, and "viral syndromes".

Overdiagnosis of Lyme Disease

Although one cannot extrapolate to general practice, it is likely that
overdiagnosis of LD is quite common. Given the ease with which people
travel, it is common to see a patient who might have LD in nonendemic areas.
The print and broadcast media disseminate incomplete or erroneous stories
about LD. Lyme disease support groups and newsletters spread stories and
speculation as if fact. In this climate, people who don't feel well search
for answers and often consider and occasionally embrace the diagnosis of LD.
It has become a diagnosis of exclusion even in areas where there has never
been a documented case of LD, resulting in therapy-related morbidity (3,4)
and expense (5). Why is LD overdiagnosed?

The great imitator. One reason for LD's overdiagnosis is the misapplication
of the concept of LD as the great imitator: Early in the delineation of the
syndrome(s) caused by Borrelia burgodorferi, LD's spectrum was thought to be
so broad as to mimic many medical and neurological syndromes. Thus the
definition of LD was open ended. The spectrum of LD is now well described
(6). The diagnosis of LD is made all too frequently in patients with
"symptoms compatible with LD" but whose examinations lack objective
findings. In such patients, a seemingly common missed diagnosis is
fibromyalgia (7-9). They may have cognitive dysfunction, thought to be
central nervous system (CNS) Lyme disease, and achiness, ascribed to Lyme
arthritis. There are no objective findings, no spinal fluid analysis or
neuropsychologic testing to establish CNS LD, and no true inflammatory joint
disease to suggest Lyme arthritis. Nonetheless, the diagnosis is late Lyme
disease and antibiotic treatment follows. The lack of response heightens
anxiety about the purported incurability of LD.

Poor reputation of serologic testing. A second reason for LD's
overdiagnosis is the poor reputation of serologic testing in LD. Recent
studies have instilled realistic confidence in serologic confirmation of LD
(10). However, tests should not be sued to make the diagnosis of LD (see
the sidebar), only to confirm a clinical diagnosis. False-positive
enzyme-linked immunosorbent assay (ELISA) results are common, seen in 7% or
more of the general population (2,11). Because the incidence of LD is well
below 1% even in hyperendemic areas, most positive ELISAs are false
positives. All positive or equivocal ELISAs should be corroborated by
immunoblot.
False negativity in real LD is relatively rare. "seronegative LD" is a
common explanation for poorly described complaints without objective
evidence of disease - ie, diagnosis by exclusion. Seronegativity in
patients diagnosed by a process of exclusion, or by viewing clinical
practice through the peculiar prism of "everything is LD", is incorrectly
viewed as proof that the tests are inaccurate. In reality, the tests are
good; it is the compulsion to diagnose LD that is in error.
No diagnostic criteria. A third reason for LD's overdiagnosis is the
absence of verified criteria for diagnosing LD: The epidemiologic Centers
for Disease Control and Prevention (CDC)LD criteria cannot be used to
diagnose LD. The absence of set standards and the persisting, incorrect
concept of LD as the great imitator causes the diagnosis of LD to fill the
void of non-disease (12). Additionally, anger focused at the "needlessly
regid" CDC criteria fans the flames of LD anxiety.
Slow resolution of symptoms. A fourth explanation of LD's overdiagnosis is
the slow resolution of symptoms related to LD: In true LD, resolution may
be delayed for months (13). Further antibiotic therapy will not hasten the
steady response. If the initial diagnosis of LD was incorrect, lack of
response to antibiotics is predictable. A lack of response is often
misinterpreted as indicating that the organism is refractory or dormant.
There is no evidence that B. burgdorferi is resistant to any of the standard
antibiotics used for LD. Lack of response to appropriate therapy should
suggest the original diagnosis was erroneous (13).

Lack of response to appropriate antibiotics is a rare event in true LD.
Worsening of true inflammation, extension to a new area (developing
arthritis ina previously unaffected joint), or progression to later features
of LD (development of peripheral neuropathy in someone previously treated
for erythema migrans) might suggest that prior therapy had not been
effective. Ticks that spread LD can also transmitotherpathogens, including
Babesia microti and a newly described Ehrlichia. Patients acquiring
symptoms after tick bites not responding to standard therapy for LD might
have another infection.

Effects of the media. A fifth explanation of LD's overdiagnosis lies in the
effects of the media, lay and medical: Exciting stories tend to sell
advertising in the broadcast and print media. Spectacular but
unsubstantiated accounts of the pain and suffering of LD are printed without
verification, and the public accepts them as fact. The medical literature
has compounded our problem by publishing peculiar cases of LD without
defining the universe from which these rare cases are drawn. Describing
"numerator" without "denominator" gives the false sense that these clinical
outliers are common, reinforcing the impression of LD as the great imitator.

Pseudo -Lyme Disease

Although these are all explanations for overdiagnosis and treatment of LD,
the real reason for this phenomenon is a lack of rigor in making the
diagnosis and following the patient. An LD alternative reality has been
accepted in some communities: LD can cause any picture in clinical
practice, the serologic tests are worthless, and therapy does not eradicate
the bug - ie, LD cannot be cured. A new diagnosis has emerged,
"pseudo-LD", to coin a term. It describes the certainty that LD is present
when there is no verifiable evidence of disease. Antibiotic therapy is
given for this"LD", followed by more treatment when symptoms do not resolve
promptly.

In practicing medicine we must demand objective findings to diagnose
patients; we must develop and use diagnostic criteria; and we must include
the possibility of intercurrent disease or evolution of the process in our
ongoing analysis of patients. With certain points in mind, pseudo-LD can be
identified (see sidebar).

Pseudo- LD is more common and more insidious than LD and more difficult to
treat. It is often quite difficult to dissuade the patient from belief in
pseudo-LD as the explanation of all problems. Pseudo-LD is the most recent
in a long line of explanatioons that are acceptable to patients who feel
"out of sorts". We must not overdiagnosis or underdiagnose real LD. We
must identify and debunk pseudo-LD whenever we find it.

--------------------------------------------------

Sidebar 1
Diagnosing Lyme Disease

*Lyme disease (LD) cannot be diagnosed by serologic testing - one can only
use testing to confirm the diagnosis. Of relevance to the use of diagnostic
testing is Bayes' theorem, which describes the predictive value of results
based on the pretest (clinical) likelihood of diagnosis. This is especially
important in LD, in which there is a high frequency of false-positive test
results.

*If the pretest likelihood of LD is high, the predictive value of a positive
test is very high - ie., a positive test confirms the clinical (pretest)
impression of LD.

*If the pretest likelihood of LD is low, the predictive value of a positive
test is quite low - ie., a positive test is much more likely to be a false
positive than to indicate the patient has LD. Thus, screening serologic
testing in a population with a low incidence of LD is not only useless, it
can create a serologically based diagnosis of pseudo-LD.

*The term "LD test" is incorrect. We measure antibodies binding to Borrelia
burgdorferi, which may not be specific and do not necessarily have
intrinsic diagnostic value. Seroreactivity is neither proof of the
diagnosis of LD, nor of active LD.

----------------------------------------------------
Sidebar 2

Identifying Pseudo-Lyme Disease

*In the absence of documented objective evidence of Lyme disease (LD) (eg.,
rash, arthritis, neurologic findings, cardiac arrhymias), the diagnosis of
LD should be questioned.
*Be skeptical if the diagnosis hinges on the presence of "symptoms
compatible with or suggestive of LD". The symptoms of LD are nonspecific
and can be found in many other diseases.

*Immunoblotting is necessary to confirm positive or equivocal enzyme-linked
immunosorbent assays (ELISAs). In 1995, a positive ELISA without
corroboration does not denote seropositivity. Equivocal ELISAs are often
incorrectly imbued with diagnostic weight.

*Be wary of the diagnosis in a patient who has had multiple tests, all (or
all but one) negative. "Seronegative LD" (which does occur, albeit rarely)
in the absence of historical or physical findings suggesting LD should be
questioned.

*There is no role for "urinary antigen tests" in evaluating LD. Polymerase
chain reaction (PCR) is a technique that allows one to identify the DNA of
the organism. The results are highly dependent on the quality of the
laboratory doing the testing. PCR is experimental and should not be used to
diagnose LD.

*Repeated courses of oral or intravenous antibiotic therapy, especially if
given for nonspecific complaints not corroborated by objective findings,
should raise suspicion about the original diagnosis.

References

1. Sigal LH: Summary of the first 100 patients seen at a Lyme disease
referral center. Am J. Med. 88:577-581, 1990.
2. Steere AC, et al.: The overdiagnosis of Lyme disease. JAMA
269:1812-1816, 1993.
3. Ettestad PJ, et al.: Ceftriaxone-associated biliary complications of
treatment of suspected disseminated Lyme disease - New Jersey, 1990-1992.
MWR 42:39 - 42, 1993.
4 Sigal LH: Editorial: Lyme disease: primum non nocere, J. Infect Dis.
171:423-424, 1995.
5. Lightfoot RW, et al.: Treatment of "possible Lyme disease". A practical
policy of the American College of Rheumatology and the Infectious Disease
Society of America based on cost-benefit analysis. Ann Intern Med
119:503-509, 1993.
6. Steere AC: Lyme Disease, N Engl. J. Med 321:586-596, 1989.
7. Sigal LH, Patella SJ: Lyme aarthritis as the incorrect diagnosis in
fibromyalgia in childern and adolescents. Pediatrics 90:523-528, 1992.
8. Hsu V, et al.: "Chronic Lyme disease" as the incorrect diagnosis in
patients with fibromyalgia. Arthritis Rheum 36:1493-1500, 1993.
9. Dinerman H, Steere AC: Lyme disease associated with fibromyalgia. Ann
Intern Med 117:281-285, 1992.
10. Dressler F., et al.: Western blotting in the serodiagnosis of Lyme
disease. J infect Dis 1677:392-400, 1993.
11. Bakken LL, et al.: Performance of 45 laboratories participating in a
profeciency testing program for Lyme disease serology. JAMA 268:891-895,
1992.
12. Meador CK: The art and science of nondisease. N Engl J Med 272:92-95,
1965.
13. Sigal LH: Persisting complaints attributed to Lyme disease: possible
mechanisms and implications for management. Am J. Med. 96:365-374, 1994.

quote:

---

Originally posted by rosespetal:
I am curious to find can antibiotics soly help with inflammation with no disease?? If that were the case I would guess people with RA would be lubed up on them continously.

---

Siegal is absolutely a quack, but let me say that it is possible that antibiotics can act as an antiinflammatory and in some cases it can complicate trying to determine how the body is reacting. There are also reasons in Chinese Medicine that explain how these have an antiinflammatory effect - some women with certain bladder conditions do better on antibiotics as antiinflammatories than NSAID's -- I can't remember the explanation exactly. I believe that there are a number of RA doctors that treat with antibiotics -- I don't know the theory, since I just browsed through those pages without reading them.

All of this however, does not take away from the fact that Siegal is to be avoided at all costs.

If you're willing to make the drive from Pompton Lakes to New Brunswick and don't mind driving another 45-50 minutes further south, I can provide you with the name of an LLMD. Email me if you're interested.

Linda

Does anyone have those reports for Rosepetal? The ones of how many times and how much $$$ steere and sigal were paid on consulting fees by various insurance companies? It adds up to quite a bit of money for a couple of less than top rate researchers.

Those would be good to show your doc along with a copy of that form they sent you. If she still recommended him after that, I'd run.

What I find pretty disheartening - is that I've been following the tratments for autoimmune diseases for over 25 years, and the whole Med. profession really has not moved one foot forward to find the root causes... and treatments are immunosuppressive.

Now, over the last 3 years, I've seen the emergence of the "Post Lyme SYndrome" (PLS)theory. Which basically is an autoimmune theory, and it's being pushed by people like Seigal and accepted by main stream docs including by LLMDs....

And they're trying so hard to prove cross-reactivity for protein bands 31 and 34 . That becuase, if you read the research - people who had the Lyme vaccine (made from Osp A/B) got pretty sick - and then expressed a boat load of bands on a western blot..... now either these people had latent Lyme, which was activated - or it was an autoimmune reaction - it's looking like they're going with the autoimmune activation theory.

Once PLS is accepted... which it looks like it's well on it's way to being - for Lyme there'll be a course of abx - for some lenghth - if you're still symptomatic, then you'll be told you have PLS.

I am in an OFFICIAL study with Brown University on weight loss. It follows people who have lost a large amount of weight and kept it off (in my case 150 lbs).

I have to fill out HUGE packets of information. Many times. Plus they sent me a statement of their ethics that I had to sign (showing that I was given a copy).

If this is all in our heads then how do you explain the burning pain total fog etc...

I mean if i was just trully depressed then I would be able to drink. I have an alcohol intollerence.

How does this doctor explain the herx reaction. I was very doubtful b4 the herx.

THIS IS A VERY OLD POST!!!!! DATED posted 01 April 2001 11:46

BUT, When my son, despite abx and no breastfeeding, tested positive for lyme (whole blood PCR) at six months of age last April, with symptoms (hypotonia), it made me realize, it wasn't in my head at this point....this darned bug was still in my body!!!

How could I have passed Bb to him, if I had killed it all off already, and this was just some "auto immune" thing?

It's just logical to me....

Thanks for the great thread!