What Do You Really Know About Lyme Disease?

[Guest guest]

http://www.canlyme.com/phys.html

 

 

(with many embedded links on this page) to read and use links go to:

http://www.canlyme.com/phys.html

 

 

 

 

What Do You Really Know About Lyme Disease?

Lyme Rash Frequency Fact -- Lyme Testing Fact -- Lyme Treatment Fact

 

Late Stage Lyme Disease: Arguments for an Individualized

Approach...Deborah A. Metzger, PhD, MD

Upcoming Conferences Click Here

 

 

U.S. lawmakers target CDC Lyme researchers as reason for new laws

 

Read here... for an unbiased compilation of Lyme disease, 'two views'

Point / Counterpoint, an examination of the controversial science and

politics of Lyme

Expert Rev Anti Infect Ther 2005; 3: 155-165

U.S. government website outlines in detail the treatment/diagnosis of

Lyme.

 

Lyme is a borderless, more widespread and more complex problem that

will affect your practice, without a doubt in the years to come. Are

we dropping the ball? In many cases...yes. We are not given the facts.

This is not alarmist, but a fact...See " Other Diseases and Lyme -

Relationship "

 

What does a negative Lyme test tell you in Canada?

 

Do a handful of researchers from outside of Canada dictate Lyme

policies that are harming Canadians?

....and why does this seem to occur without evidence being thoroughly

reviewed by those Canadians charged with our care when conflicts of

interest are well known? This group of non-Canadian researchers

continually cite and review each others work while ignoring the larger

global databank of research by independent researchers. Some are/were

involved in large lawsuits brought against them as a direct result of

Lyme disease.

 

Read this, Section XI especially, and then ask why Lyme patients are

very angry with Canada blindly adopting the U.S. policies.

Does treating Lyme disease cause antibiotic resistance?

 

 

Treatable chronic Lyme has been defined away in much of this groups'

research and the global medical insurance/HMO/workers compensation

industry has taken full advantage of this. Lives are destroyed as the

trillion dollar global medical insurance industry off-loads disability

costs back onto the taxpayer. Is their a connection between medical

guidelines and these medical insurers/HMO's?

 

An example of how to use definition to keep numbers down is...

 

" Human population numbers on this planet would be very low if we

counted only those who met both of these two arbitrarily derived

criteria, 1) brown skin and 2) blue eyes' ...all others who did not

meet these criteria would simply be ignored and not studied for their

human characteristics. Why would they not be studied?... Because those

who set the criteria also controlled the funding for the research

necessary to verify the facts. "

 

A similar scenario is used to define away late stage chronic treatable

Lyme and this scenario is given credibility because those defining it

are funded by and then published under the umbrella of, medical

institutions we once trusted without question.

 

Medical guideline writers, publishers and the entire medical business

have come under much criticism and scrutiny in recent years.1 2 3 19

It is a shame but it appears that forensic type

investigation/accounting may have to become routine in all medical

guideline production and publishing to protect public health.16

 

Universities, medical research funding, medical associations, medical

journals, medical leadership, medical governance and medical education

are so interwoven with big pharma, vaccine manufacturers, medical

device manufacturers, and the medical insurance industry it is

impossible to have the medical 'industry' police themselves. Perhaps

the time has come for non-medical oversight committees. Perhaps this

is long overdue. If you think not read this thoroughly and in Canada

we simply rubber stamp this conflicted medicine.

 

What does it mean to have a negative Lyme serology in Canada?

 

The Public Health Agency of Canada would like us to believe late stage

Lyme disease testing is approaching 100% accuracy and they have even

posted that statement on their website. This is a misleading statement

and devoid of explanation and one wonders why such a statement is

made. Testing for Lyme is an inaccurate science.

 

The Lyme ELISA consistently misses at least 50% of Lyme disease cases

due to the insensitivity of the assay and variability with antibiotic

treatment.abstract

 

Serology can only tell us that detectable levels of antibodies in the

blood sera either are or are not found based upon; the lab

technicians' expertise, the quality of kits used to run the test, the

testing methods, the criteria employed in analyzing results, the

patients' immune response or lack of it, and several other factors.

Lyme is very much a clinical diagnosis. Serology is not confirmatory.

 

Osp (outer surface protein) A, band 31, and B, band 34, bands 83, and

94 are very borrelia speific yet are not even reported on in Canada by

our labs nor are they included in the U.S. CDC criteria for a

confirmed case of Lyme 17 19. Subsequently a person showing symptoms

of Lyme may have reactivity to one of these bands but we will never

know using our labs. Physicians will not have that information to

correlate to the patients' symptoms. Lyme is very much a clincial

diagnosis. Serology is not confirmatory.

 

What a negative result truly means is that the bacteria may have moved

from blood sera to other regions in the body making it undetectable by

that method of testing. It may mean that the bacterial load in the

blood sera was too low to detect. It may mean that the criteria our

labs used to analyze the blood sera may have been too restrictive to

give a true picture. It may mean that for whatever reason the person

did not mount a detectable level of immune response to borrelia. So

clearly any result could have been a false negative limited by the

science itself and/or methodology. Lyme disease is very much a

clinical diagnosis. Serology is not confirmatory.

 

Serology, by definition is " a medical science dealing with blood sera

and especially their immunological reactions and properties " ,

therefore it cannot be used as a determining factor for late stage

Lyme when ample evidence indicates borrelia do not stay in blood sera.

If borrelia stayed in the blood sera the Canadian Blood Services would

be very concerned about screening donors would they not? They are not.

Lyme disease is very much a clinical diagnosis. Serology is not

confirmatory.

 

It is not feasible to biopsy a persons' bladder wall, synovium,

organs, ligamentous tissue, etc. in most cases. But if it were,

research has shown these locations along with the brain are excellent

hiding locations for the elusive Lyme bacteria. In fact, organ

donation has given the recipients Lyme disease.18 Serology will not

uncover borrelia in these locations.

 

Lyme disease been linked to diseases that comprise over 2 million

cases in Canada alone...including Alzheimer's, ALS (Lou Gehrig's

Disease), Parkinsonism, Multiple Sclerosis, Chronic Fatigue,

Fibromyalgia, heart disorders, psychiatric disorders and many other

chronic illnesses of 'unknown origin' which collectively cost the

taxpayer billions of dollars.

 

Even though factual peer-reviewed published research has found Lyme

directly or indirectly in many of these illnesses, not one cent is

spent making the connection. We do not propose that all these cases

are caused by Lyme....but research has proved that an unknown percent

are. We as a society demand to know what that percent is. (see Other

diseases and Lyme)

 

One reason nothing is being done is because of statements like that on

the Public Health Agency of Canada website touting misleading accuracy

percentages giving a false picture as to the extent of the problem.

 

As representatives of the most vested stakeholders (victims) CanLyme

should have the undeniable right to review relevant data yet

authorities in Canada to date will not share nor pinpoint the

definition of late stage, chronic Lyme on which they make claims

including claims of testing accuracy. Nor do some authorities here

acknowledge the well documented failures of testing using present

methods and criteria.

 

Virtually everyone who has approached us at CanLyme, with symptoms of

Lyme, has tested negative using the U.S. CDC/IDSA criteria which is

followed by our medical authorities.

 

When other independent fully 'certified and accredited' labs identify

Lyme specific antibodies in many of these same Canadians our medical

authorities' reaction to this is to make public statements to the

effect that these highly reputable labs and their scientists are

somehow less than competent.

 

These very sick Canadians are then confidently reassured by falsely

confident physicians that their present symptoms do not fit Lyme, when

the symptoms clearly do in many cases.

 

Those patients, who are lucky enough to have a doctor who ignores the

poorly contrived one-tracked standard of care regarding Lyme dictated

in Canada, will usually get well with treatment while the unlucky

majority stumble through years of misery, questionable diagnoses and

in some cases, finacial ruin and death.

 

The same independent labs who are identifying Canadians with the

disease after our federal/provincial labs give negative results are

given rigorous blinded challenges regularly by government

certification boards. They pass with flying colours consistently.

 

It's time that we, the victims representatives, have a vehicle to

challenge our labs for accuracy/competency the same way the

certification boards test independent labs for accuracy. We need to be

able to participate in blinded challenges of our federal and

provincial labs. We encourage every medical professional in Canada to

support us in this regard.

 

Lyme disease is showing up in other diagnoses in ever-increasing

numbers as research is done. A dedicated Lyme disease research

facility in Canada capable of studying all aspects of Lyme disease and

its role in the many other disease processes linked to it is

desparately needed. The facility will require full pathology

capability including serology, histology, DNA, culture, etc. for both

live sample and post-mortem study. The management of such a facility

should be comprised of CanLyme members and non CanLyme persons to

ensure transparency.

 

-- Multiple Sclerosis Responds to Antibiotics...Why?

-- Emerging Infectious Determinants in Chronic Disease (US CDC EID

July 2006)

-- More reason not to rely on antibody test

-- CME Update on Lyme, Ginger R. Savely

 

U.S. government website outlines in detail the treatment/diagnosis of

Lyme.

Revealing mapped geographical study of Lyme & Multiple Sclerosis

Microbes in tissues living under the Alzheimer Name - Identity Theft?

University of Washington...Can relying on evidence-based medicine be a

flawed and dangerous practice?

Is Canadian Blood Supply at Risk?..you decide Medical Guideline

Writers Corrupt...Report

Nancy's Plea To Doctors - MS / Lyme

Medical Post... 'A twist of Lyme' ...By Carol Hilton

-- Medical Guidelines Writers - Inventing Disease - We must take back

our profession from corporate interests

-- Academic Research Tainted by Commercial Funding - We must question

everything

-- Dr. Stephen Barrett of Quackwatch Exposed In Trial

Collective Intelligence, A New Reality - New Hope

 

See an epidemiology map of what is immediately across our border. Lyme

disease carrying ticks have been found in every Province in Canada.

Lyme cases have been confirmed Canada wide.

 

Even soft shell ticks can transmit Borreliosis to humans. 7 B. Hermsii

has novel presentations possibly assisting in avoiding detection.10

 

Nobel prize nominee links Parkinson's to Lyme - May 2005

 

Read this from the Lancet -- Oct. 04 Lyme borreliosis: perspective of

a scientist–patient.

 

Read -- " Lyme Disease - Two Standards of Care "

 

With close to 300,0008 cases of Lyme Disease having been confirmed in

United States in the past twenty-eight years (under estimated 10 fold

(1,2,3) according to the CDC putting the likely number of cases at 2

to 3 million), and considering many of these cases are from states

that border Canada it is remarkable Canada reports it has only had a

few hundred cases. Lyme borreliosis is now acknowledged as the most

highly prevalent arthropod-borne human disease in northern temperate

regions of the world 13. Canadian medicine and science, due to the

lack of recognition of the clinical diagnoses, combined with lack of

surveillance and research, places us at the bottom of the scale in

dealing with this serious disease. We are years behind.

 

Why are the CDC Lab Testing Criteria for Lyme Disease so Poor?

U.S. government website outlines in detail the treatment/diagnosis of

Lyme.

Prophylactic treatment, considering that Lyme has been found in

cerebrospinal within hours, may be good medicine

(use early Lyme treatment protocol).

ELISA and Western Blot (WB) testing will miss most Lyme cases 4.

Many more cases were testing positive under the old CDC criteria which

was changed with very little scientific explanation or input. This

below will illustrate why there was astonishment in the scientific

community when the old criteria were changed...but the prescription

insurance lobby were happy...no diagnosis no treatment (now several

states have enacted legislation protecting doctors who treat Lyme

based on clinical presentation only as per CDC recommendations).

Lyme Disease in Canada, rheumatoid arthritis society in canada, JA

National Institute of Allergy and Infectious Disease of the NIH states

" symptoms is considered to be the most reliable diagnostic indicator

of Lyme disease; such a history is sufficient to justify antibiotic

therapy in the absence of further serological tests, since only about

30 percent of such individuals would usually be seropositive by

Western blot and ELISA assays. " 4

SAFEST TICK REMOVAL METHODS CLICK HERE

Lyme Disease In Your Province:

British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Québec,

New Brunswick, Nova Scotia, P.E.I., Newfoundland

See also - Lyme Disease in Non-endemic Areas of Canada Linked to

Borrelia burgdorferi-positive Blacklegged Ticks, Ixodes scapularis

Dispersed by Birds - Canadian researchers

 

 

Many Lyme patients were firstly diagnosed with other illnesses such as

Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis,

Psoriatic Arthritis, Infectious Arthritis, Osteoarthritis,

Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome,

Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth's Fisease,

Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers

Disease, crohn's disease, ménières syndrome, reynaud's syndrome,

sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis,

psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep

disorders, thyroid disease and various other illnesses.

These diagnoses need to be revisited with Lyme as a differential

diagnosis in many cases. See Diagnosis

Early onset symptoms may be fever, malaise (a vague feeling of bodily

discomfort or unwellness, possibly nausea), fatigue, headache, muscle

aches (myalgia), and joint aches (arthralgia). Many do not get these

early symptoms and their first signs may be tingling/numbness in any

area or other such neurologic disorders which then progress to other

systems in the body.

The bull's-eye rash (erythema migrans) occurs only in some cases

(30%+) but is often missed or unrecognized and does not rule out Lyme

Disease in its absence. It is not always a bull's eye and can be more

generalized in appearance.

Click - Compilation of Peer Reviewed Literature - Symptoms and

Characteristics of Lyme

 

Physicians who use Lyme titers to yea or nay a diagnosis, and monitor

them during and after antibiotic therapy, and pronounce their patients

'cured' when their test becomes negative (if lucky enough to have had

a positive), do not understand what they are measuring and are wasting

the patient's/governments/insurers money and doing them a disservice.

The Controversy, the Collusion

The tide turns: On November 27, the New York Assembly Health Committee

held a public hearing on the Lyme disease controversy on in Albany. A

hearing room seating 400 was nearly packed with Lyme patients, and

while the NY health department did not show up to testify or observe,

the insurance lobby was likely very sorry it did. The members of the

Health committee asked very pointed questions of the insurance

representative, Alan Muney of Oxford Health Plans -- such as

Assemblyman Joel Miller's " just how many patients will it take? " to

satisfy Oxford that long term Lyme disease exists. While most of the

testimony centered on the science of diagnosis and treatment, many

presenters pointed to collusion between insurers and OPMC in

suppressing the real truth about long-term illness and the

appropriateness of long-term treatment. FAIM's Howard Hindin, and Pat

Smith of the Lyme Disease Association, both honed in on this theme

with great success. The hearing was covered by New York NewsDay, the

Poughkeepsie Journal, the Legislative Gazzette, and the public

television journal, Inside Albany.