Fw: Alternative Health magazine May 2001

[Guest guest]

" Millions of people who are diagnosed with multiple sclerosis, fibromyalgia,

>Alzheimer's, chronic fatigue syndrome and other degenerative diseases could

>have Lyme Disease causing or contributing to their condition.

>

>Forget just about everything you think you know about Lyme disease.

>

>It is not a rare disease, it is epidemic. " (from Alternative Medicine

Magazine May 2001 --- article follows)

THIS IS THE LEAD PARAGRAPH FROM THE ARTICLE FROM ALTERNATVIE MEDICINE

MAGAZINE THIS MONTH (article follows) . THE ARTICLE WAS SCANNED AND IT MAY

MISS A BIT HERE OR THERE BUT THE PERSON TRIED TO GET THE ENTIRE ARTICLE.

THIS ARTICLE MAY BE VERY MEANINGFUL TO MANY OF YOU!! THERE IS LOTS OF

UNDIAGNOSED AND MISDIAGNOSED LYME WHICH CAUSES VARIOUS AUTOIMMUNE DISORDERS.

kathy (RA sept 98 diagnosed with lyme dec 98 AP since jan 99 not well yet

but much better)

>www.AlternativeMedicine.com

>Editorial Office

>21 Main Street

>Upper Level

>Tiburon, CA 94920

>editor@...

>

>

>LYME DISEASE

>

>The Unknown Epidemic

>

>By DJ Fletcher and Tom Klaber

>

>Millions of people who are diagnosed with multiple sclerosis, fibromyalgia,

>Alzheimer's, chronic fatigue syndrome and other degenerative diseases could

>have Lyme Disease causing or contributing to their condition.

>

>Forget just about everything you think you know about Lyme disease.

>

>It is not a rare disease, it is epidemic. It is not just tick-borne; it can

>also be transmit­ted by other insects, including fleas, mosquitoes and

>mites - and by human-to-human contact. Neither is Lyme usually indicated by

>a bull's-eye rash; this is found in only a minority of cases. And, except

>when it is diagnosed at a very early stage, Lyme is rarely cured by a

simple

>course of antibiotics. Finally, Lyme is not just a disease that makes you

> " tired and achy " - it can utterly destroy a person's life and ultimately be

>fatal.

>

>Lyme disease, in fact, might be the most insidious-and least

>un­derstood-infectious disease of our day. " If it weren't for AIDS, " says

>Nick , Ph.D., President of Igenex, Inc., a research and testing

>laboratory in Palo Alto, California, " Lyme would be the number one

>infectious disease in the United States and West­ern Europe. "

>

>Lyme disease was first recognized in the United States in 1975, after a

>mysterious outbreak of arthritis near Lyme, Con­necticut. It wasn't until

>1982 that the spirochete that causes Lyme was identified. It was

>subsequently named Borrelia burgdor­feri (Bb), in honor of Willy

Burgdorfer,

>Ph.D., a pioneer re­searcher. Many now see the disease, also called Lyme

>borreliosis, as more than a simple infection, but rather as a complex

>illness that can consist of other co-infections, especially of the

>para­sitic pathogens Babesia and Ehrlichia.

>

>Lyme is sometimes called " the Great Imposter " because it can manifest such

a

>broad range of symptoms that it is often misdiagnosed as other diseases.

> Ray , M.D., of New Haven, Connecticut, says that many people

>who have Lyme " are thought to have multiple sclerosis, ALS [Lou Gehrig's

>disease], chronic fatigue syndrome, fibromyalgia, Alzheimer's " and other

>debilitating conditions. Dr. has worked with physicians who have

seen

>Lyme complications " ranging from neuropsychiatric problems, such as brain

>fog or even bipolar disorder, to ophthalmological and neurological

problems.

>Headaches and heart problems (Lyme carditis) are common. " Joanne Whitaker,

>M.D., Research Director of the Bowen Research & Training Institute in Palm

>Harbor, Florida, believes that Lyme is at the base of both chronic fa­tigue

>syndrome and fibromyalgia-the difference between the two being related to

>the virulence of the organism and the in­dividual immune response. All

three

>illnesses were " discovered " around the same time in the 1980s.

>

>Katrina Tang, M.D., H.M.D., Medical Director of the Century Wellness Clinic

>in Reno, Nevada, says, " [Lyme] eludes many doctors because it can mimic

many

>other diseases. This poses a public health risk, because doctors may treat

>the wrong disease or not find the true cause, thereby delaying treatment. "

>

>Delaying treatment can be disastrous. In later stages, writes ph J.

>Burrascano, M.D., of East Hampton, New York, " Lyme also includes collateral

>conditions that result from being ill with multiple pathogens, each of

which

>can have a profound impact on the person's overall health. Together, damage

>to virtually all bodily systems can result. "

>

>lynn S. Barkley, Ph.D., M.D., Associate Professor (Neurobiology,

>Physiology and Behavior) at the University of California, notes that

>around 15% of Lyme patient develop " serious problems. For those

individuals,

>chronic debilitation and extreme pain can change their lives dramati­cally.

>A few individuals have committed suicide due to their inability to tolerate

>the extreme pain coupled with the frustration of being unable to obtain

>follow-up an­tibiotic therapy. "

>

>UNACKNOWLEDGED EPIDEMIC

>

>Officially, the U.S. Centers for Disease Control and Prevention (CDC)

>reports that there have been less than 160,000 con­firmed cases of Lyme

>disease since 1980. This contrasts sharply with the estimates of those

>physicians treating patients with degenerative diseases. Says Dr. ,

>who is a director of the International Lyme and Associated Diseases Society

>(ILADS), and whose laboratory employs a number of tests for diagnosing

Lyme,

> " Lyme is grossly under-reported. In the U.S., we probably have about

200,000

>cases per year " W Lee Cowden, M.D., of , Texas, a world-renowned

>consultant and integrative medicine educator; states that " There are very

>few symptoms where you shouldn't consider Lyme, especially given that a

>quarter of the U.S. population may be affected. More than 50% of

chronically

>ill people may have Lyme contributing to their condition. " Dr. Whitaker,

who

>specializes in advanced testing methods for Lyme, suspects that the great

>majority of people in the U.S. are infected with Bb-because the hundreds of

>tests she performs every year now invariably come out positive.

>

>All the other clinicians with whom the authors spoke agreed that Lyme has

>reached epidemic proportions. How is this possible? Obviously 25% of

>Americans haven't been bitten by one of a select few species of ticks. The

>answer is that Lyme is not transmitted just by ticks.

>

> " Of the more than 5,000 children I've treated, 240 have been born with the

>disease, " says Dr. , who specializes in Pediatric and Adolescent

>Medicine. " Twelve children who've been breast-fed have subsequently

>developed Lyme. Bb can be transmitted transplacentally, even with in vitro

>fertilization; I've seen eight children infected in this way. People from

>Asia who come to me with the classic Lyme rash have been infected by fleas

>and gnats. "

>

> Bach, D.O., presented a study on transmission via semen at the

>American Psychiatric Association meeting in No­vember 2000. He confirmed Bb

>DNA in semen using the PCR test (Polymerase Chain Reaction). Dr. Bach calls

>Bb " a brother " to the syphilis spirochete because of their genetic

>similarities. For that reason, when he treats a Lyme patient in a

>relationship, he often treats the spouse; otherwise, he says, they can just

>pass the Bb back and forth, reinfecting each other.

>

>Dr. Tang adds other avenues of in­fection: " Transmission may also occur via

>blood transfusion and through the bite of mosquitoes or other insects. " Dr.

>Cowden contends that unpasteurized goat or cow milk can infect a person

with

>Bb.

>

>UNRELIABLE TESTING

>

>What is the reason for the discrepancy between the govern­ment's Statistics

>and the experience of front-line physicians? Says Dr. , " The CDC

>criteria was developed only for surveil­lance; it was never meant for

>diagnosis. Lyme is a clinical diag­nosis. The test evidence may be used to

>support a clinical diagnosis, but it doesn't prove one has Lyme. About 50%

>of patients I've seen have been seronegative [blood test negative] for Lyme

>but meet all the clinical criteria. "

>

>Most of the standard tests used to detect Lyme are notori­ously unreliable.

>Explains Dr. , " The initial thing patients usually get is a Western

>Blot antibody test. This test is not pos­itive immediately after Bb

>exposure, and only 60% or 70% of people ever show antibodies to Bb. "

>

>Dr. Cowden favors two tests developed respectively by Dr. Whitaker and by

>Lida Mattnan, Ph.D., Director of the Medical Research Institute in

>Warren, Michigan. However both of these tests have yet to win FDA approval

>for diagnostic use. Explains Dr. Whitaker, " We have developed the Rapid

>Identi­fication of Bb (RIBb) test. A highly purified fluorescent antibody

>stain specific for Bb is used to detect the organism. This test provides

>results in 20 to 30 minutes, a key to getting the right treatment started

>quickly. "

>

>Dr. Mattman's culture test also uses a fluorescent antibody staining

>technique which allows her to study live cultures under a fluorescent

>microscope. " When a person is sick, " says Dr. Mattman, " antibodies get tied

>up in the tissues, in what is called an immune complex, and are not

detected

>in the patient's blood plasma. So it's not that the antibody isn't there or

>hasn't been produced; it just isn't detectable. Thus, the tests which are

>based on detecting antibodies give false negatives. " The tests of Drs.

>Whitaker and Mattman do not look for antibodies but look for the organism,

>in the same way that tuberculosis is diagnosed.

>

> There are several reasons why Lyme is so difficult to test for - and

>difficult to treat. Take, for instance, the bull's-eye rash - called

Erythma

>migrans - that is supposed to appear after being bitten by a tick carrying

>the Lyme spirochete. Every doctor with whom the authors spoke said that

this

>rash appears in only 30% to 40% of infected people. Dr. said that

>fewer than 10% of the infected children he sees exhibit the rash.

>

>A MASTER OF ELUSIVENESS

>

>More importantly, Lyme can disseminate throughout the body remarkably

>rapidly. In its classic spirochete form, the bacteria can contract like a

>large muscle and twist to propel itself forward: because of this

spring-like

>action it can actually swim better in tissue than in blood. It can travel

>through blood vessel walls and through connective tissue. Animal studies

>have shown that in less than a week after being infected, the Lyme

>spirochete can be deeply embedded inside tendons, muscle, the heart and the

>brain. It invades tissue, replicates and destroys its host cell as it

>emerges. Sometimes the cell wall collapses around the bacterium, forming a

>cloaking device, allowing it to evade detection by many tests and by the

>body's immune system.

>

>But the main reason that Lyme is so resistant to detection and therapy is

>that it can radically change form - it is pleomorphic. Explains Dr.

>Whitaker; " We have examined blood samples from over 800 patients with

>clinically diagnosed Lyme disease with RiBb test and have rarely seen Bb in

>anything but a cell wall deficient (CWD) form. The problem is that a CWD

>organism doesn't have a fixed exterior mem­brane presenting information - a

>tar­get - that would allow our immune systems or drugs to attack it, or

>allow most current tests to detect it. "

>

>As a CWD organism, says Dr. Mattman, Bb is extremely diverse in its

>appearance, its activity and its vul­nerability. Adds Dr. Cowden, " Be­cause

>Bb is very pleomorphic, you can't expect any one antibiotic to be

effective.

>Also, bacteria share genetic material with one another; so the offspring of

>the next bug can have a new genetic sequence that can resist the

>antibiotic. "

>

>CLINICAL DIAGNOSIS

>

>The doctors the authors interviewed all had their own testing preferences,

>but each insisted that Lyme was a clinical diagnosis, only supported by

>testing-and retesting.

>

> " We look at the patient's history and symptoms, genetic tendencies,

>metabolism, past immune function problems or infection, " explains Dr. Bock,

> " as well as history and duration of antibiotic treatment, co-infection,

>nutritional and micronutritional status and also psychospiritual factors. "

>Dr. Tang uses all of the above, but also analyzes the blood using darkfield

>microscopy-although she cautions that not spotting the spirochete doesn't

>mean that the patient does not have Lyme disease. Dr. Cowden also employs

>muscle testing and electrodermal screening. Dr. Burrascano has developed a

>weighted list of diagnostic criteria and an exhaustive symptom checklist.

>

> " In pediatric screening especially, " says Dr. , " we ask about sudden,

>some-times subtle, changes in behavior or cog­nitive function-such as

losing

>skills or losing the ability to learn new material; not wanting to play or

>go outside; run­ning a fever; being sensitive to light or noise. If one has

>joint phenomena, we know that an inflammatory or infectious process is

>present. A hallmark of Lyme is fatigue unrelieved by rest. "

>

>For women, Dr. Barkley has found that testing around the time of menses

>in­creases the probability of discovering the presence of Bb. " Women with

>Lyme have an exacerbation of their symptoms around menses, " she explains.

> " The de­cline of both estrogen and progesterone at the end of the menstrual

>cycle is associ­ated with the worsening of the patient's Lyme symptoms. "

>

>ANTIBIOTIC TREATMENT

>

>Every authority the authors spoke with considered antibiotics the primary

>treat­ment for Lyme, but that the accepted " standard " antibiotic therapies

>(of a dura­tion and type acceptable to insurance car­riers, HMOs,

mainstream

>physicians, etc.) are insufficient.

>

>Lyme is sometimes classified as having different stages early vs. chronic,

>or localized vs. disseminated. " The biggest distinc­tion is between

>early-stage and chronic, " says Dr. Whitaker. " In the beginning, many organ

>systems are invaded while the pa­tient may experience no symptoms. As time

>goes on we see multiple system symptoms involving the whole body,

especially

>the central and peripheral nervous systems, and the muscu­loskeletal, skin

>and circulatory systems. Many Lyme cases are di­agnosed by psychiatrists.

>Dr. Fallon is studying cognitive and other neuropsychiatric

>manifestations. "

>

>The problem, says Dr. Barkley, is that " There isn't an ade­quate treatment

>model. So if the physician says you have Lyme, and gives you the standard

>antibiotic therapy, and you aren't better; the thinking is that you must

>have something else wrong, such as an autoimmune problem, or else you

didn't

>have Lyme disease in the first place. Short-term oral antibiotics are

>effective in treating localized Lyme, but with disseminated Lyme, the

>requirement for either intravenously administered antibiotics or long-term

>oral antibiotics becomes common. "

>

>In his regular practice, Dr. Bock has always tried to avoid antibiotics.

>But, he says, " If you go back to syphilis, the history of spirochetes is

one

>of being able to hide out and then reappear, causing severe, devastating

>neurological illness. This isn't a risk I would recommend taking with Bb. "

>

>Most of the physicians recommended an immediate short course of antibiotics

>for anyone bitten by a deer tick, or who ex­hibits certain symptoms. " It

>takes a while for the immune sys­tem to produce antibodies, " says Dr.

>Barkley. " So Lyme testing-other than by a skin biopsy from an active rash

>within 14 days following the bite may yield inconclusive results. Symp­toms

>of Lyme include fever night sweats, fatigue or a flu-like illness that does

>not improve within three to five days. " Other symptoms reported by

>physicians include stiff neck, pro-longed joint and muscle pain, heart

>palpitations, brain fog or severe headaches.

>

> " I tally all the initial symptoms and signs, and try to weed them out one

by

>one, " says Dr. . However, he cautions, " Treatment duration varies with

>each individual. If one stops antibiotics prematurely, a more resilient Bb

>infection will de­velop that will cause more brain and body injury. "

>

>ADJUNCT THERAPIES

>

>None of these physicians relied solely on antibiotics; they used immune

>system-strengthening protocols as well.

>

> " The immune system may be less able to respond if the person is having a

>hard time clearing toxins, " says Dr. Bock. " You're going to add to this

>overload by taking antibiotics. For general immune support, we've used

>maitake and reishi mushrooms, ginseng and astragalus.

>

> " Natural medicine approaches include anti-inflammatory eicosanoids such as

>fish oil and borage seed oil; high-potency multivitamin and mineral

>formulas; CoQ10 and other mitochondrial nutrients; cognitive enhancement

>substances such as carnitine and certain herbal extracts. Acupuncture

>combined with physical therapy can often reduce pain. I have posted an

>online article that discusses these alternative approaches in more depth at

>my website, www.PatientsAmerica.com . "

>

>Dr. Cowden recited a litany of natural immunotherapy agents. His

>recommendations include the following: " Transfer factor-ImmuneFactor 2 and

>CellResponse are good products; Thymic Protein A; medicinal mushroom

>combinations such as ImmPower AHCC; glyconutrients like Ambrotose;

>arabinogalactan (Larix), an immune-enhancing polysaccharide; and

As­tragalus

>Supreme. " Dr. Cowden also notes that " if you use a pharmaceutical

>antibiotic, you need to use an herbal antifungal to reduce stress on the

>liver and kidneys. "

>

>LIFESTYLE CHANGES

>

> " Avoid sugars because they feed these bugs, " advises Dr. Cow­den. " It is

>most important to balance saliva pH between 6.7 and 70. Sufficient dietary

>minerals bring pH up if low. Reducing stress will raise pH; so will

>identifying and removing food, nu­trient and inhalant allergies. You should

>identify your meta­bolic type and then follow the appropriate diet.

>Grapefruit seed extract and certain other substances, including vitamin C,

>can interfere with tissue uptake of the antibiotics and make them less

>effective. Take as few non-essential supplements as possi­ble - consult

with

>a physician knowledgeable about nutrition-and time them as far from the

>antibiotic as possible. "

>

>Dr. Bock reminds us that, " It's also important to support the endocrine

>system. In some cases, cognitive abilities im­proved when subclinical

>hypothyroid problems were treated. Chronic stress can cause suppression of

>the immune system Manage the effects of stress on the body: Use relaxation

>techniques and biofeedback. Find a group for emo­tional support. "

>

>In his practice, Dr. has found that, " Taking acidophilus and other

>probiotics is always important. [Antibiotics kill the intestinal flora

>necessary for digestion and immune functions; probiotics like lactobacillus

>re-inoculate the intestines.] Stay away from or severely limit alcohol

>intake. Develop a health­ier standard of living. Rest is needed. We've

found

>that a parent who has a child with Lyme is often feeling guilty. One has to

>work with these difficult feelings. I emphasize that it's not a parent's

>fault; you can't protect your child from Lyme exposure. "

>

>PRESENT LIMITATIONS

>

>None of the experts the authors consulted claimed to com­pletely understand

>Lyme or to be able to completely cure it in every case. Some people

infected

>with Bb may never manifest the symptoms of Lyme. Others become seriously

ill

>soon after they are infected. Treatment must be customized from patient to

>patient and can vary widely. " Certain people may clear Lyme without

>antibiotic therapy, " says Dr. Barkley. " However; the other extreme is that

>even with antibiotics, some people with Lyme have died from this disease. "

>Says Dr. , " We have seen children from one day old to 18 years of age

>who have re­quired from three months to six years of antibiotic therapy. We

>have had some patients on antibiotic therapy for very long periods, and

>we've done follow-ups for as long as 15 years post treatment. The criterion

>for stopping therapy is that one must be totally Lyme disease - symptom

free

>for two months, with no Lyme flare induced by another infection or menses

>and no 'Herx' [Jarisch-Herxheimer reaction of the body manifesting symptoms

>in response to dying Bb]. "

>

>The situation is quite difficult now. " It's sad where we are with this

>disease, " says Dr. Cowden. " You're supposed to go through the 'standard'

>treatment first before turning to alterna­tive treatments. We need to turn

>this around, into a logical, in­tegrated approach. "

>

>The impetus for this change must come not only from the patients who have

>been classically infected by a tick bite, but by those who suffer from

> " unexplained " muscle and joint pain, unrelieved fatigue and cognitive

>impairment-and by those who are afflicted with degenerative diseases that

>can be caused or aggravated by Lyme. Presently, such patients will find few

>doctors experienced in Lyme, because of the new­ness of the disease and

lack

>of understanding about it-and because those doctors who take a

comprehensive

>approach to diagnosing and treating Lyme are com­monly harassed by state

>medical boards, insurance com­panies and HMOs.

>

>It is up to patients to actually educate their doctors about the inadequacy

>of standard testing and the ne­cessity for using techniques such as

>electrodermal screening and darkfield microscopy. And it is up to pa­tients

>to become politically involved with Lyme advo­cacy groups, such as those

>listed here, to fight for their right to proper medical care. The earlier

>Lyme is diag­nosed, the easier it is to cure. For people with chronic Lyme

>symptoms, the road to recovery can be long. With comprehensive integrative

>treatment, however - a combination of the best of conventional and

>alterna­tive medicine protocols - their health can be continually and

>dramatically improved.

>

>

>

>Contacts:

>

>lynn S. Barkley,

>M.D., Ph.D.

>Div. of Biological Science

>211 Briggs Hall

>University of California,

>

>, CA 95616

>Tel: 530-752-0203

>msbarkley@...

>

> Bock, M.D.

>Rhinebeck Health Center

>108 Montgomery St.

>Rhinebeck, NY 12572

>Tel: 845-876-7082

>Fax: 845-876-4615

>www.rhinebeckhealth.com

>sbock@...

>

>ph Burrascano, M.D.

>139 Springs Fireplace Rd.

>East Hampton, NY 11937

>Tel: 631-324-7337

>Fax: 631-329-0520

>

>W. Lee Cowden, M.D.

>1333 W. , #113

>, TX 75080

>Fax: 972-562-9740

>wlcowden@...

>

>Nick , Ph.D.

>IgeneX, Inc.

>797 San Rd.

>Palo Alto, CA 94303

>Tel: 800-832-3200

>Fax: 650-424-1196

>Igenex@...

>www.igenex.com

>

> Ray , M.D.

>Pediatric and Adolescent Medicine and Lyme Disease

>111 Park St., Suite F

>New Haven, CT 06511

>Tel: 203-772-1123

>Fax: 203-772-0682

>

>Lida Mattman, Ph.D.

> Medical

>Research Institute

>11664 Rd.

>Warren, MI 48093

>Tel: 810-755-6430

>Fax: 810-755-4511

>

>Katrina Tang, M.D.

>Century Wellness Clinic

>380 Brinkby Ave.

>Reno, NV 89509

>Tel: 775-826-9500

>Fax: 775-825-3301

>www.centurywellness.com

>staff@...

>

>JoAnn Whitaker, M.D.

>Bowan Research and

>Training Institute, Inc.

>P.O. Box 627

>Palm Harbor, Florida 34682

>Tel: 727-937-9077

>Fax: 727-942-9687

>www.bowan.org

>bowanresearch@...

>

>Websites:

>

>Lymenet:

>The Lyme Disease Network

>www.lymenet.org

>

>International Lyme and Associated Diseases Society

>P.O. Box 367

>Andover, MA 04216

>www.ilads.org

>ilads@...

>

>

>

>

>

[Guest guest]

rheumatic Fw: Alternative Health magazine May 2001

> " Millions of people who are diagnosed with multiple sclerosis,

fibromyalgia,

> >Alzheimer's, chronic fatigue syndrome and other degenerative diseases

could

> >have Lyme Disease causing or contributing to their condition.

> >

> >Forget just about everything you think you know about Lyme disease.

> >

> >It is not a rare disease, it is epidemic. " (from Alternative Medicine

> Magazine May 2001 --- article follows)

>

>

> THIS IS THE LEAD PARAGRAPH FROM THE ARTICLE FROM ALTERNATVIE MEDICINE

> MAGAZINE THIS MONTH (article follows) . THE ARTICLE WAS SCANNED AND IT MAY

> MISS A BIT HERE OR THERE BUT THE PERSON TRIED TO GET THE ENTIRE ARTICLE.

> THIS ARTICLE MAY BE VERY MEANINGFUL TO MANY OF YOU!! THERE IS LOTS OF

> UNDIAGNOSED AND MISDIAGNOSED LYME WHICH CAUSES VARIOUS AUTOIMMUNE

DISORDERS.

> kathy (RA sept 98 diagnosed with lyme dec 98 AP since jan 99 not well yet

> but much better)

>

> >www.AlternativeMedicine.com

> >Editorial Office

> >21 Main Street

> >Upper Level

> >Tiburon, CA 94920

> >editor@...

> >

> >

> >LYME DISEASE

> >

> >The Unknown Epidemic

> >

> >By DJ Fletcher and Tom Klaber

> >

> >Millions of people who are diagnosed with multiple sclerosis,

fibromyalgia,

> >Alzheimer's, chronic fatigue syndrome and other degenerative diseases

could

> >have Lyme Disease causing or contributing to their condition.

> >

> >Forget just about everything you think you know about Lyme disease.

> >

> >It is not a rare disease, it is epidemic. It is not just tick-borne; it

can

> >also be transmit­ted by other insects, including fleas, mosquitoes and

> >mites - and by human-to-human contact. Neither is Lyme usually indicated

by

> >a bull's-eye rash; this is found in only a minority of cases. And, except

> >when it is diagnosed at a very early stage, Lyme is rarely cured by a

> simple

> >course of antibiotics. Finally, Lyme is not just a disease that makes you

> > " tired and achy " - it can utterly destroy a person's life and ultimately

be

> >fatal.

> >

> >Lyme disease, in fact, might be the most insidious-and least

> >un­derstood-infectious disease of our day. " If it weren't for AIDS, " says

> >Nick , Ph.D., President of Igenex, Inc., a research and testing

> >laboratory in Palo Alto, California, " Lyme would be the number one

> >infectious disease in the United States and West­ern Europe. "

> >

> >Lyme disease was first recognized in the United States in 1975, after a

> >mysterious outbreak of arthritis near Lyme, Con­necticut. It wasn't until

> >1982 that the spirochete that causes Lyme was identified. It was

> >subsequently named Borrelia burgdor­feri (Bb), in honor of Willy

> Burgdorfer,

> >Ph.D., a pioneer re­searcher. Many now see the disease, also called Lyme

> >borreliosis, as more than a simple infection, but rather as a complex

> >illness that can consist of other co-infections, especially of the

> >para­sitic pathogens Babesia and Ehrlichia.

> >

> >Lyme is sometimes called " the Great Imposter " because it can manifest

such

> a

> >broad range of symptoms that it is often misdiagnosed as other diseases.

> > Ray , M.D., of New Haven, Connecticut, says that many people

> >who have Lyme " are thought to have multiple sclerosis, ALS [Lou Gehrig's

> >disease], chronic fatigue syndrome, fibromyalgia, Alzheimer's " and other

> >debilitating conditions. Dr. has worked with physicians who have

> seen

> >Lyme complications " ranging from neuropsychiatric problems, such as brain

> >fog or even bipolar disorder, to ophthalmological and neurological

> problems.

> >Headaches and heart problems (Lyme carditis) are common. " Joanne

Whitaker,

> >M.D., Research Director of the Bowen Research & Training Institute in

Palm

> >Harbor, Florida, believes that Lyme is at the base of both chronic

fa­tigue

> >syndrome and fibromyalgia-the difference between the two being related to

> >the virulence of the organism and the in­dividual immune response. All

> three

> >illnesses were " discovered " around the same time in the 1980s.

> >

> >Katrina Tang, M.D., H.M.D., Medical Director of the Century Wellness

Clinic

> >in Reno, Nevada, says, " [Lyme] eludes many doctors because it can mimic

> many

> >other diseases. This poses a public health risk, because doctors may

treat

> >the wrong disease or not find the true cause, thereby delaying

treatment. "

> >

> >Delaying treatment can be disastrous. In later stages, writes ph J.

> >Burrascano, M.D., of East Hampton, New York, " Lyme also includes

collateral

> >conditions that result from being ill with multiple pathogens, each of

> which

> >can have a profound impact on the person's overall health. Together,

damage

> >to virtually all bodily systems can result. "

> >

> >lynn S. Barkley, Ph.D., M.D., Associate Professor (Neurobiology,

> >Physiology and Behavior) at the University of California, notes

that

> >around 15% of Lyme patient develop " serious problems. For those

> individuals,

> >chronic debilitation and extreme pain can change their lives

dramati­cally.

> >A few individuals have committed suicide due to their inability to

tolerate

> >the extreme pain coupled with the frustration of being unable to obtain

> >follow-up an­tibiotic therapy. "

> >

> >UNACKNOWLEDGED EPIDEMIC

> >

> >Officially, the U.S. Centers for Disease Control and Prevention (CDC)

> >reports that there have been less than 160,000 con­firmed cases of Lyme

> >disease since 1980. This contrasts sharply with the estimates of those

> >physicians treating patients with degenerative diseases. Says Dr. ,

> >who is a director of the International Lyme and Associated Diseases

Society

> >(ILADS), and whose laboratory employs a number of tests for diagnosing

> Lyme,

> > " Lyme is grossly under-reported. In the U.S., we probably have about

> 200,000

> >cases per year " W Lee Cowden, M.D., of , Texas, a

world-renowned

> >consultant and integrative medicine educator; states that " There are very

> >few symptoms where you shouldn't consider Lyme, especially given that a

> >quarter of the U.S. population may be affected. More than 50% of

> chronically

> >ill people may have Lyme contributing to their condition. " Dr. Whitaker,

> who

> >specializes in advanced testing methods for Lyme, suspects that the great

> >majority of people in the U.S. are infected with Bb-because the hundreds

of

> >tests she performs every year now invariably come out positive.

> >

> >All the other clinicians with whom the authors spoke agreed that Lyme has

> >reached epidemic proportions. How is this possible? Obviously 25% of

> >Americans haven't been bitten by one of a select few species of ticks.

The

> >answer is that Lyme is not transmitted just by ticks.

> >

> > " Of the more than 5,000 children I've treated, 240 have been born with

the

> >disease, " says Dr. , who specializes in Pediatric and Adolescent

> >Medicine. " Twelve children who've been breast-fed have subsequently

> >developed Lyme. Bb can be transmitted transplacentally, even with in

vitro

> >fertilization; I've seen eight children infected in this way. People from

> >Asia who come to me with the classic Lyme rash have been infected by

fleas

> >and gnats. "

> >

> > Bach, D.O., presented a study on transmission via semen at the

> >American Psychiatric Association meeting in No­vember 2000. He confirmed

Bb

> >DNA in semen using the PCR test (Polymerase Chain Reaction). Dr. Bach

calls

> >Bb " a brother " to the syphilis spirochete because of their genetic

> >similarities. For that reason, when he treats a Lyme patient in a

> >relationship, he often treats the spouse; otherwise, he says, they can

just

> >pass the Bb back and forth, reinfecting each other.

> >

> >Dr. Tang adds other avenues of in­fection: " Transmission may also occur

via

> >blood transfusion and through the bite of mosquitoes or other insects. "

Dr.

> >Cowden contends that unpasteurized goat or cow milk can infect a person

> with

> >Bb.

> >

> >UNRELIABLE TESTING

> >

> >What is the reason for the discrepancy between the govern­ment's

Statistics

> >and the experience of front-line physicians? Says Dr. , " The CDC

> >criteria was developed only for surveil­lance; it was never meant for

> >diagnosis. Lyme is a clinical diag­nosis. The test evidence may be used

to

> >support a clinical diagnosis, but it doesn't prove one has Lyme. About

50%

> >of patients I've seen have been seronegative [blood test negative] for

Lyme

> >but meet all the clinical criteria. "

> >

> >Most of the standard tests used to detect Lyme are notori­ously

unreliable.

> >Explains Dr. , " The initial thing patients usually get is a Western

> >Blot antibody test. This test is not pos­itive immediately after Bb

> >exposure, and only 60% or 70% of people ever show antibodies to Bb. "

> >

> >Dr. Cowden favors two tests developed respectively by Dr. Whitaker and by

> >Lida Mattnan, Ph.D., Director of the Medical Research Institute in

> >Warren, Michigan. However both of these tests have yet to win FDA

approval

> >for diagnostic use. Explains Dr. Whitaker, " We have developed the Rapid

> >Identi­fication of Bb (RIBb) test. A highly purified fluorescent antibody

> >stain specific for Bb is used to detect the organism. This test provides

> >results in 20 to 30 minutes, a key to getting the right treatment started

> >quickly. "

> >

> >Dr. Mattman's culture test also uses a fluorescent antibody staining

> >technique which allows her to study live cultures under a fluorescent

> >microscope. " When a person is sick, " says Dr. Mattman, " antibodies get

tied

> >up in the tissues, in what is called an immune complex, and are not

> detected

> >in the patient's blood plasma. So it's not that the antibody isn't there

or

> >hasn't been produced; it just isn't detectable. Thus, the tests which are

> >based on detecting antibodies give false negatives. " The tests of Drs.

> >Whitaker and Mattman do not look for antibodies but look for the

organism,

> >in the same way that tuberculosis is diagnosed.

> >

> > There are several reasons why Lyme is so difficult to test for - and

> >difficult to treat. Take, for instance, the bull's-eye rash - called

> Erythma

> >migrans - that is supposed to appear after being bitten by a tick

carrying

> >the Lyme spirochete. Every doctor with whom the authors spoke said that

> this

> >rash appears in only 30% to 40% of infected people. Dr. said that

> >fewer than 10% of the infected children he sees exhibit the rash.

> >

> >A MASTER OF ELUSIVENESS

> >

> >More importantly, Lyme can disseminate throughout the body remarkably

> >rapidly. In its classic spirochete form, the bacteria can contract like a

> >large muscle and twist to propel itself forward: because of this

> spring-like

> >action it can actually swim better in tissue than in blood. It can travel

> >through blood vessel walls and through connective tissue. Animal studies

> >have shown that in less than a week after being infected, the Lyme

> >spirochete can be deeply embedded inside tendons, muscle, the heart and

the

> >brain. It invades tissue, replicates and destroys its host cell as it

> >emerges. Sometimes the cell wall collapses around the bacterium, forming

a

> >cloaking device, allowing it to evade detection by many tests and by the

> >body's immune system.

> >

> >But the main reason that Lyme is so resistant to detection and therapy is

> >that it can radically change form - it is pleomorphic. Explains Dr.

> >Whitaker; " We have examined blood samples from over 800 patients with

> >clinically diagnosed Lyme disease with RiBb test and have rarely seen Bb

in

> >anything but a cell wall deficient (CWD) form. The problem is that a CWD

> >organism doesn't have a fixed exterior mem­brane presenting information -

a

> >tar­get - that would allow our immune systems or drugs to attack it, or

> >allow most current tests to detect it. "

> >

> >As a CWD organism, says Dr. Mattman, Bb is extremely diverse in its

> >appearance, its activity and its vul­nerability. Adds Dr. Cowden,

" Be­cause

> >Bb is very pleomorphic, you can't expect any one antibiotic to be

> effective.

> >Also, bacteria share genetic material with one another; so the offspring

of

> >the next bug can have a new genetic sequence that can resist the

> >antibiotic. "

> >

> >CLINICAL DIAGNOSIS

> >

> >The doctors the authors interviewed all had their own testing

preferences,

> >but each insisted that Lyme was a clinical diagnosis, only supported by

> >testing-and retesting.

> >

> > " We look at the patient's history and symptoms, genetic tendencies,

> >metabolism, past immune function problems or infection, " explains Dr.

Bock,

> > " as well as history and duration of antibiotic treatment, co-infection,

> >nutritional and micronutritional status and also psychospiritual

factors. "

> >Dr. Tang uses all of the above, but also analyzes the blood using

darkfield

> >microscopy-although she cautions that not spotting the spirochete doesn't

> >mean that the patient does not have Lyme disease. Dr. Cowden also employs

> >muscle testing and electrodermal screening. Dr. Burrascano has developed

a

> >weighted list of diagnostic criteria and an exhaustive symptom checklist.

> >

> > " In pediatric screening especially, " says Dr. , " we ask about

sudden,

> >some-times subtle, changes in behavior or cog­nitive function-such as

> losing

> >skills or losing the ability to learn new material; not wanting to play

or

> >go outside; run­ning a fever; being sensitive to light or noise. If one

has

> >joint phenomena, we know that an inflammatory or infectious process is

> >present. A hallmark of Lyme is fatigue unrelieved by rest. "

> >

> >For women, Dr. Barkley has found that testing around the time of menses

> >in­creases the probability of discovering the presence of Bb. " Women with

> >Lyme have an exacerbation of their symptoms around menses, " she explains.

> > " The de­cline of both estrogen and progesterone at the end of the

menstrual

> >cycle is associ­ated with the worsening of the patient's Lyme symptoms. "

> >

> >ANTIBIOTIC TREATMENT

> >

> >Every authority the authors spoke with considered antibiotics the primary

> >treat­ment for Lyme, but that the accepted " standard " antibiotic

therapies

> >(of a dura­tion and type acceptable to insurance car­riers, HMOs,

> mainstream

> >physicians, etc.) are insufficient.

> >

> >Lyme is sometimes classified as having different stages early vs.

chronic,

> >or localized vs. disseminated. " The biggest distinc­tion is between

> >early-stage and chronic, " says Dr. Whitaker. " In the beginning, many

organ

> >systems are invaded while the pa­tient may experience no symptoms. As

time

> >goes on we see multiple system symptoms involving the whole body,

> especially

> >the central and peripheral nervous systems, and the muscu­loskeletal,

skin

> >and circulatory systems. Many Lyme cases are di­agnosed by psychiatrists.

> >Dr. Fallon is studying cognitive and other neuropsychiatric

> >manifestations. "

> >

> >The problem, says Dr. Barkley, is that " There isn't an ade­quate

treatment

> >model. So if the physician says you have Lyme, and gives you the standard

> >antibiotic therapy, and you aren't better; the thinking is that you must

> >have something else wrong, such as an autoimmune problem, or else you

> didn't

> >have Lyme disease in the first place. Short-term oral antibiotics are

> >effective in treating localized Lyme, but with disseminated Lyme, the

> >requirement for either intravenously administered antibiotics or

long-term

> >oral antibiotics becomes common. "

> >

> >In his regular practice, Dr. Bock has always tried to avoid antibiotics.

> >But, he says, " If you go back to syphilis, the history of spirochetes is

> one

> >of being able to hide out and then reappear, causing severe, devastating

> >neurological illness. This isn't a risk I would recommend taking with

Bb. "

> >

> >Most of the physicians recommended an immediate short course of

antibiotics

> >for anyone bitten by a deer tick, or who ex­hibits certain symptoms. " It

> >takes a while for the immune sys­tem to produce antibodies, " says Dr.

> >Barkley. " So Lyme testing-other than by a skin biopsy from an active rash

> >within 14 days following the bite may yield inconclusive results.

Symp­toms

> >of Lyme include fever night sweats, fatigue or a flu-like illness that

does

> >not improve within three to five days. " Other symptoms reported by

> >physicians include stiff neck, pro-longed joint and muscle pain, heart

> >palpitations, brain fog or severe headaches.

> >

> > " I tally all the initial symptoms and signs, and try to weed them out one

> by

> >one, " says Dr. . However, he cautions, " Treatment duration varies

with

> >each individual. If one stops antibiotics prematurely, a more resilient

Bb

> >infection will de­velop that will cause more brain and body injury. "

> >

> >ADJUNCT THERAPIES

> >

> >None of these physicians relied solely on antibiotics; they used immune

> >system-strengthening protocols as well.

> >

> > " The immune system may be less able to respond if the person is having a

> >hard time clearing toxins, " says Dr. Bock. " You're going to add to this

> >overload by taking antibiotics. For general immune support, we've used

> >maitake and reishi mushrooms, ginseng and astragalus.

> >

> > " Natural medicine approaches include anti-inflammatory eicosanoids such

as

> >fish oil and borage seed oil; high-potency multivitamin and mineral

> >formulas; CoQ10 and other mitochondrial nutrients; cognitive enhancement

> >substances such as carnitine and certain herbal extracts. Acupuncture

> >combined with physical therapy can often reduce pain. I have posted an

> >online article that discusses these alternative approaches in more depth

at

> >my website, www.PatientsAmerica.com . "

> >

> >Dr. Cowden recited a litany of natural immunotherapy agents. His

> >recommendations include the following: " Transfer factor-ImmuneFactor 2

and

> >CellResponse are good products; Thymic Protein A; medicinal mushroom

> >combinations such as ImmPower AHCC; glyconutrients like Ambrotose;

> >arabinogalactan (Larix), an immune-enhancing polysaccharide; and

> As­tragalus

> >Supreme. " Dr. Cowden also notes that " if you use a pharmaceutical

> >antibiotic, you need to use an herbal antifungal to reduce stress on the

> >liver and kidneys. "

> >

> >LIFESTYLE CHANGES

> >

> > " Avoid sugars because they feed these bugs, " advises Dr. Cow­den. " It is

> >most important to balance saliva pH between 6.7 and 70. Sufficient

dietary

> >minerals bring pH up if low. Reducing stress will raise pH; so will

> >identifying and removing food, nu­trient and inhalant allergies. You

should

> >identify your meta­bolic type and then follow the appropriate diet.

> >Grapefruit seed extract and certain other substances, including vitamin

C,

> >can interfere with tissue uptake of the antibiotics and make them less

> >effective. Take as few non-essential supplements as possi­ble - consult

> with

> >a physician knowledgeable about nutrition-and time them as far from the

> >antibiotic as possible. "

> >

> >Dr. Bock reminds us that, " It's also important to support the endocrine

> >system. In some cases, cognitive abilities im­proved when subclinical

> >hypothyroid problems were treated. Chronic stress can cause suppression

of

> >the immune system Manage the effects of stress on the body: Use

relaxation

> >techniques and biofeedback. Find a group for emo­tional support. "

> >

> >In his practice, Dr. has found that, " Taking acidophilus and other

> >probiotics is always important. [Antibiotics kill the intestinal flora

> >necessary for digestion and immune functions; probiotics like

lactobacillus

> >re-inoculate the intestines.] Stay away from or severely limit alcohol

> >intake. Develop a health­ier standard of living. Rest is needed. We've

> found

> >that a parent who has a child with Lyme is often feeling guilty. One has

to

> >work with these difficult feelings. I emphasize that it's not a parent's

> >fault; you can't protect your child from Lyme exposure. "

> >

> >PRESENT LIMITATIONS

> >

> >None of the experts the authors consulted claimed to com­pletely

understand

> >Lyme or to be able to completely cure it in every case. Some people

> infected

> >with Bb may never manifest the symptoms of Lyme. Others become seriously

> ill

> >soon after they are infected. Treatment must be customized from patient

to

> >patient and can vary widely. " Certain people may clear Lyme without

> >antibiotic therapy, " says Dr. Barkley. " However; the other extreme is

that

> >even with antibiotics, some people with Lyme have died from this

disease. "

> >Says Dr. , " We have seen children from one day old to 18 years of

age

> >who have re­quired from three months to six years of antibiotic therapy.

We

> >have had some patients on antibiotic therapy for very long periods, and

> >we've done follow-ups for as long as 15 years post treatment. The

criterion

> >for stopping therapy is that one must be totally Lyme disease - symptom

> free

> >for two months, with no Lyme flare induced by another infection or menses

> >and no 'Herx' [Jarisch-Herxheimer reaction of the body manifesting

symptoms

> >in response to dying Bb]. "

> >

> >The situation is quite difficult now. " It's sad where we are with this

> >disease, " says Dr. Cowden. " You're supposed to go through the 'standard'

> >treatment first before turning to alterna­tive treatments. We need to

turn

> >this around, into a logical, in­tegrated approach. "

> >

> >The impetus for this change must come not only from the patients who have

> >been classically infected by a tick bite, but by those who suffer from

> > " unexplained " muscle and joint pain, unrelieved fatigue and cognitive

> >impairment-and by those who are afflicted with degenerative diseases that

> >can be caused or aggravated by Lyme. Presently, such patients will find

few

> >doctors experienced in Lyme, because of the new­ness of the disease and

> lack

> >of understanding about it-and because those doctors who take a

> comprehensive

> >approach to diagnosing and treating Lyme are com­monly harassed by state

> >medical boards, insurance com­panies and HMOs.

> >

> >It is up to patients to actually educate their doctors about the

inadequacy

> >of standard testing and the ne­cessity for using techniques such as

> >electrodermal screening and darkfield microscopy. And it is up to

pa­tients

> >to become politically involved with Lyme advo­cacy groups, such as those

> >listed here, to fight for their right to proper medical care. The earlier

> >Lyme is diag­nosed, the easier it is to cure. For people with chronic

Lyme

> >symptoms, the road to recovery can be long. With comprehensive

integrative

> >treatment, however - a combination of the best of conventional and

> >alterna­tive medicine protocols - their health can be continually and

> >dramatically improved.

> >

> >

> >

> >Contacts:

> >

> >lynn S. Barkley,

> >M.D., Ph.D.

> >Div. of Biological Science

> >211 Briggs Hall

> >University of California,

> >

> >, CA 95616

> >Tel: 530-752-0203

> >msbarkley@...

> >

> > Bock, M.D.

> >Rhinebeck Health Center

> >108 Montgomery St.

> >Rhinebeck, NY 12572

> >Tel: 845-876-7082

> >Fax: 845-876-4615

> >www.rhinebeckhealth.com

> >sbock@...

> >

> >ph Burrascano, M.D.

> >139 Springs Fireplace Rd.

> >East Hampton, NY 11937

> >Tel: 631-324-7337

> >Fax: 631-329-0520

> >

> >W. Lee Cowden, M.D.

> >1333 W. , #113

> >, TX 75080

> >Fax: 972-562-9740

> >wlcowden@...

> >

> >Nick , Ph.D.

> >IgeneX, Inc.

> >797 San Rd.

> >Palo Alto, CA 94303

> >Tel: 800-832-3200

> >Fax: 650-424-1196

> >Igenex@...

> >www.igenex.com

> >

> > Ray , M.D.

> >Pediatric and Adolescent Medicine and Lyme Disease

> >111 Park St., Suite F

> >New Haven, CT 06511

> >Tel: 203-772-1123

> >Fax: 203-772-0682

> >

> >Lida Mattman, Ph.D.

> > Medical

> >Research Institute

> >11664 Rd.

> >Warren, MI 48093

> >Tel: 810-755-6430

> >Fax: 810-755-4511

> >

> >Katrina Tang, M.D.

> >Century Wellness Clinic

> >380 Brinkby Ave.

> >Reno, NV 89509

> >Tel: 775-826-9500

> >Fax: 775-825-3301

> >www.centurywellness.com

> >staff@...

> >

> >JoAnn Whitaker, M.D.

> >Bowan Research and

> >Training Institute, Inc.

> >P.O. Box 627

> >Palm Harbor, Florida 34682

> >Tel: 727-937-9077

> >Fax: 727-942-9687

> >www.bowan.org

> >bowanresearch@...

> >

> >Websites:

> >

> >Lymenet:

> >The Lyme Disease Network

> >www.lymenet.org

> >

> >International Lyme and Associated Diseases Society

> >P.O. Box 367

> >Andover, MA 04216

> >www.ilads.org

> >ilads@...

> >

> >

> >

> >

> >