Re: Need article on Lyme in kids to motivate parents to act

[Guest guest]

In a message dated 6/11/02 7:32:26 PM, Worldcom33@... writes:

<< I have some friends whose kids are all around ticks and they are not

taking the lyme thing seriously. I would like a good article

to " Scare " them a bit. Anybody have any ideas?

world

>>

Here is a great article....you can call ALTERNATIVE MAGAZINE and request the

magazine itself.... THAT is concrete proof.

sue in nj

sue massie

Lyme Disease: The Unknown Epidemic

http://mercola.com/2001/jul/25/lyme_disease.htm

July 25, 2001

by D. J. 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.

Animal studies have shown that in less than a week after being infected, the

Lyme spirochete can be deeply embedded inside tendons, muscles, tissue, the

heart and the brain.

" 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 Mattman, 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.

When Dr. treats a Lyme patient who's in a relationship, he often treats

the spouse as well; otherwise, he says, they can just pass the Bb back and

forth, reinfecting each other.

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.

The Lyme spirochete (Bb) is pleomorphic, meaning that it can radically change

form. The photo on the left shows a colony of Bb both in spirochete and round

cell wall deficient (CWD) forms.

In the CWD form, the Lyme organism can lack the membrane information

necessary for the immune system and antibiotics to recognize and attack it.

Dr. Lida Mattman states that cell wall deficient organisms are more properly

called cell wall divergent.

The Lyme spirochete can not only change from the classic spiral into a round

form, but can change back again into a spiral. The middle photo shows this

process occurring in the area shown by the arrow.

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 the 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,

sometimes 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. "

Government Persecution Of Lyme Disease Doctors

Physicians who treat Lyme disease in ways other than the established standard

of care--which means a course of antibiotics lasting no more than 30

days--risk invasive, exhausting, time-consuming investigation by state

licensing agencies, leading to possible loss of their right to practice

medicine.

Activists report that 50 physicians in Texas, New York, Oregon, Rhode Island,

New Jersey, Connecticut and Michigan have been investigated, disciplined

and/or stripped of their licenses over the past three years because of their

approach to healing Lyme disease.

This past November 9th, 500 patients who got well after their doctors used

alternative or complementary methods joined in a protest rally in New York

City. They rose to defend Dr. ph Burrascano, who has treated an estimated

7,000 cases.

As this story was heading for publication, New York's Office of Professional

Medical Misconduct was engaged in what activists call an unjustified fishing

expedition that will probably last for months and will allow state

bureaucrats to hunt for any irregularity that could be used to damage Dr.

Burrascano.

State medical boards seem to be trying to protect the medical insurance

industry rather than patients.

In most cases, effective alternative/complementary treatments require much

more doctor time per patient and often include a broad range of medicines and

supplements consumed over a much longer period of time, costing much more

money than the current standard of care accepted by medical insurers.

But at the rally, patients angrily rejected the medical board's suggestion

that their cases demonstrated anything negative about their physician. In

fact, they all insisted, it was Dr. Burrascano whose knowledge, patience and

care finally freed them from the pain and debilitation that had been ruining

the quality of their lives.

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, prolonged 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 article online 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 7.0. 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]. "

" There are very few symptoms where you shouldn't consider Lyme, " says Dr.

Cowden. " more than 50% of chronically ill people may have Lyme contributing

to their condition. "

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.

Alternative Medicine.com Issue 41

[Guest guest]

In a message dated 6/11/02 7:32:26 PM, Worldcom33@... writes:

<< I have some friends whose kids are all around ticks and they are not

taking the lyme thing seriously. I would like a good article

to " Scare " them a bit. Anybody have any ideas?

world

>>

I also have 6 kids with lyme....would they like to talk with me??? I was

paralyzed from the neck down, had EVERY symptom of lyme except testicular

pain and my husband has nearly died due to severe tachycardia. The depression

is unreal, and the most IMPORTANT fact for children is THEY ARE BEING ROBBED

OF THEIR EDUCATION because they can't focus, have poor memories, are

diagnosed ADD, ADHD, 's disease, Crohn's disease, etc. (these are

PERSONAL stories to me). Another point is their physical health, their

physical bodies that are being ravished due to a bacterial infection.

My kids are now all honor roll students and have a " 504 " diagnosis, which

allows a little extra for them. It is NJ STATE LAW.

I would be more than happy to speak with anyone on this matter.

732 933-4011

sue in nj

sue massie

[Guest guest]

Yes it is NJ state law, and Lyme must be discussed...........and 504

students get special consideration in many areas of education.

So if your child needs that type of classification, go into the school and

get it.

If your child is too sick to attend school, reduce to half days, or go on

home instruction. These are all things a School in NJ MUST DO for their

students in their district...........!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ConnieKrawz nwnj

[Guest guest]

Excellent article, thank you!

NanB

[Guest guest]

I produced a video called " The Children of Dr.. "

Dr. Ray specializes in the treatment of children with severe

Lyme, the video has interviews with the children , who have severe symptoms,

and the parents , along with Dr . The video illustrates the crippling

impact this disease has not only on the children but their parents and

community as well.

Although these children suffer from all sorts of symptoms they still remain

upbeat and believe that they will someday be well again.

The video is over 1 hour and is available.

Send check for $20.00 plus 3.00 shipping and handling to

VBD Video Productions

PO Box 1123

Stratford Ct 06615

Thanks you,

Dan Peck