Excerpt:

17 Sep, 2010 04:00 AM

A LAURIETON doctor says he has “absolute proof” two of his patients have a tick-borne disease that health authorities say does not exist in Australia.

GP Dr Peter Mayne said two of his patients had the bacterial illness Lyme disease.

He urged medical colleagues to keep an eye out for the infection.

“I’ve taken tissue samples at the bite sites, and sent them off for DNA analysis, and they were positive,” Dr Mayne said.

Debate continues about whether Australian ticks can carry Lyme disease.

“There are perceptions that Lyme disease doesn’t exist here in Australia, and the medical profession have been lulled into thinking that they don’t have to worry about Lyme disease,” Dr Mayne said.

In its later stages, the infection can spread through the bloodstream and affect the brain, heart and joints.

Earlier symptoms can include a rash, fever, headaches, tiredness and joint pain.

Lyme disease made headlines this month after an autopsy showed a Sydney man had the disease when he died.

The dead man’s wife planned to launch a class action against NSW Health, The Sydney Morning Herald reported.

Dr Mayne said he had a list of about 30 patients – from Newcastle to Coffs Harbour – with the disease.

Excerpt:

RALEIGH — As the weather warms and walks through tick-laden woods beckon, state officials have confirmed that Wake County is among the North Carolina counties where Lyme disease is a known threat.

The state Department of Health and Human Services said Wednesday that in 2009 two cases of the tick-borne disease were found in patients who had not left the county during the 30 days before they contracted the infection.

Four similar cases were confirmed in the state last year, health officials said: one each in Wilkes, Wilson, Pitt and Carteret counties.

The infection is usually systemic (affecting the whole body) and causes
a sudden fever. In mild cases it lasts a few days, following a pattern
similar to flu but often in two phases – a period of illness lasting a
few days, then a slight recovery, then a second period of illness. In
mild cases the second phase lasts a short time and the patient recovers,
but in severe types the illness develops and progresses rapidly, leading
to organ failure and often death if not treated with intervention and
support.

Incubation time

From the time you were infected with the bacteria, there is a period
where it has to reproduce enough to cause illness – called the
‘incubation time’. With human leptospirosis this is typically 3 to 21
days, with most patients developing illness after about 3 to 14 days. It
does not usually take more than 28 days, but in rare cases very long
incubation periods have been reported. It generally cannot show illness
in less than 24 hours unless the volume of bacteria taken into the
bloodstream was massively larger than normal.

First stage

Leptospirosis starts suddenly, with a severe headache, redness in the
eyes, muscle pains, fatigue and nausea and a fever of 39°C (102°F) or
above. There is sometimes a red non-blanching pinprick rash on the skin,
similar to that seen in meningitis. Young children can be tired or
distressed and may show an aversion to bright light. The severe headache
is almost always present and can be incapacitating. Nausea may or may
not cause vomiting. Muscle pains can be extreme and are often
particularly bad in the calf and back areas – muscles will be sore to
move and to touch. A rapid pulse is also common in the first few days.

The skin rash develops in the first one or two days and often the skin
is warm and pink just beforehand, with the patient complaining of
feeling warm. Rashes can occur anywhere but in some cases are confined
to local regions of skin such as the front of the legs. Sometimes they
will be itchy, but rashes are only seen in about 30% of all cases so the
lack of any rash is not too significant.

Psychological changes are often seen, with patients feeling depressed,
confused, aggressive and sometimes psychotic – with schizophrenia and
hallucinations, personality changes and violence.

This phase lasts between three and five days, then the patient
(temporarily) recovers. During this phase the bacteria are active in the
patient’s bloodstream (so it is sometimes called the septecaemic phase)
and so can be detected by lab tests.

Second stage

In many mild cases this doesn’t happen at all, but where the infection
is more severe, the patient enters a second phase of illness after a few
days of apprent recovery. The initial symptoms and fever return,
accompanied with chest and abdominal pain, some renal problems and
psychological changes. Increased symptoms of meningitis are often seen
with neck stiffness and vomiting, but in most mild cases the patient
will not suffer kidney or liver failure and will eventually recover.
There may be a sore throat and dry cough, with a litle blood. With
treatment, mild cases will recover within a few weeks.

During this second phase the bacteria are only really active in the
tissues of the patient, and so can be difficult to find in the
bloodstream, making lab tests a problem. This second phase is usually
called the ’tissue’ or ‘immune’ phase.

Severe infections

In cases of particularly virulent serovars or patients with poor health,
the infection follows a different pattern and the patient develops very
rapid and severe symptoms from the start, without much of a remission.
Symptoms are the same as for the mild type but more pronounced, and
multiple organs are damaged – liver and kidney failure can occur within
10 days, leading to jaundice and death if not treated. Hemorrhages are
common (including bleeding from the mouth, eyes and other mucous
membranes), plus infection of the heart and significant internal
bleeding. Dialysis is the most important intervention and the patient
will require antibiotics and hospital admission in order to stand a
chance of survival. Death, when it occurs, is usually due to heart,
liver or respiratory failure. Severe infections are often called
‘icteric’ because of the presence of jaundice, and these are the only
cases that can really be called Weil’s disease.

Recovery

Patients with mild infections recover quite quickly, so are usually
feeling OK after a few weeks, but they can suffer from fatigue and
depression for a while and may be at risk from persistent infection.
Patients with the more severe infections can take several weeks to
recover, as removing the bacteria is not the problem – they will have
caused damage to the body’s tissues that take time to heal. Although
some patients can die, with medical treatment the chances of survival
are good – though patients that have had a severe illness may suffer
long-term symptoms due to organ damage that cannot completely heal.
Psychological changes (mood swings, depression, psychoses) are common
for a few months following recovery.
Immunity

Patients that survive infection will develop some immunity, but only to
the serovar that infected them and some closely-related ones. They can
still be infected by other strains, and the immunity lasts no more than
ten years in humans. There is a very small possibility of auto-immune
reactions to the bacteria if patients are reinfected again, but the main
concern of patients is that they can suffer from medium-term symptoms
due to persistent infection which are almost impossible to treat.

Causes of infection – guide for the public

Human infection is always caused by exposure to the bacteria that have
been shed by an infected animal, and in 90% of cases it will be their
urine (although infection direct from blood is also possible). Direct
transfer, where the urine comes into contact with the patient and enters
their bloodstream, is very rare except in accidental exposure when
handling infected animals, and the usual route is via water that is
subsequently drink, or used for recreation such as swimming.

The bacteria have to physcially enter your bloodstream in order to cause
an infection, and as they cannot easily penetrate dry undamaged skin,
they can only enter at certain locations – injuries where the skin is
broken are the obvious places, but mucous membranes lining the airway,
mouth, lungs and female sexual organs are also potential routes – so
breathing in or swallowing bacteria is a risk, and leptospirosis can
sometimes be spread via sexual intercourse.

Dry unbroken skin is a perfect barrier against the bacteria, but cuts
and scrapes need only be tiny for the bacteria to find an entry point.
There is also a suggestion that the bacteria can pass through very
waterlogged skin (such as when skin is immersed in water for a long
time), as the cellular structure of the skin changes slightly. This is
still only a theory and we have no cases on file.

The bacteria are not generally airborne, so the only risks for breathing
in the infection are where water droplets are being created – such as
pressure-washing work or in the spray chambers of some air conditioning
plant. Being “generally close” to an infected person or animal will not
cause an infection!

It’s important to realize that the bacteria are incredibly small, and so
even a pinhead sized drop of water can carry millions of them. In theory
it only takes one to cause illness, but in reality your body’s immune
system will attack them to a certain extent and so the chances of
illness increase as the volume that enters the body (the ‘innoculum’)
increases.
What are the chances of catching this infection from my local
river/pond/cess pit?

Obviously this depends on two things – if the water is infected with the
bacteria, and if you and said bacteria get in close enough contact!

On average in the developed world (Europe, mainland USA, etc.) about 20%
of feral rats carry strains of leptospira that could cause illness in
humans. This of course varies locally – in your area you may have 100%
rat carriers, or 0% – it just depends on the social lives of the rats in
question. It’s therefore sensible to assume that on average 10% of all
freshwater sites are infectious, with more probability for sites which
stand good chances of hosting rats nearby (urban ponds, slow-moving
rivers and canals, lakes near farm buildings, etc.) and less of a risk
for non-rodent-friendly sites such as rapid flowing highland streams or
very large estuaries and river deltas. Obviously any site with a high
water throughput (such as a river) is less of a risk than stagnant
water, as rodent urine will be diluted by the flow. Any water treated
with chlorine or UV-sterilisation will be totally safe. This means that
swimming pools, and many municipal water fountains and architectural
features, are usually of no risk in terms of leptospirosis.

The chances that being exposed to contaminated water would lead to
infection depends on what you do in the water. To become infected you
must actually allow water to enter your body, though that could be as
simple as through an open cut, or by licking a finger. Swimming is the
highest risk activity as there is no way to prevent some ingestion and
skin contact, though other activities such as fishing, waterskiing,
sailing and kayaking can also present risk. Remember that the bacteria
cannot survive in saltwater so there is no possible risk from swimming
in the sea, or in tidal regions of rivers where the water is briny.

In general in the developed world people are wary of open water sites
from general cleanliness viewpoints, and would not drink from a lake
without a very good reason. The chances of infection are therefore quite
low, but these statistics hide the fact that in many cases the infection
is mild, and goes unreported. Despite only a few thousand cases being
reported in the developed world each year, there will be many times more
cases which are simply written off as a cold or stomach bug – we
estimate the total number of cases in the developed world could be up to
100,000 per year.

In developing countries the risks are greater, as rat populations are
more widespread and water use is different. The quantity of untreated
water used for washing, bathing and drinking is far higher, and the
association between hygiene risks and open water is rarely made.
Education in developing countries is the only solution to this issue, as
the bacteria and the rats are there to stay.

Treatment of human leptospirosis – guide for the public

Treatment for acute illness in humans is in two parts – an antibiotic to
control the bacteria and general support of the patient’s internal
organs so they maintain their ability to recover while the bacteria are
removed.

Antibiotics

Leptospirosis can be treated by a wide range of antibiotics, and medical
staff will select the best based on availability, the patient’s age and
any other medications they may be taking. In mild cases the medication
will be given by mouth adn the patient can stay at home, but in severe
infections the antibiotics are often given directly into the bloodstream
via a drip (IV) and so require them to remain in hospital. This is also
important to allow them to be monitored as the infection progresses.

In many cases, penicillin is used – but if the patient is allergic then
a number of alternatives are available as well. It is very important to
take antibiotics as prescribed – do not miss any doses and take all the
doses even if you feel that you’ve recovered. Stopping a course of
antibiotics before the end can lead to resistant bacteria taking hold
and causing very severe illness. The dose of antibiotic will be
calculated based on the patient’s age and body mass, and medical staff
do not need to know the exact strain of leptospira involved before
beginning treatment – indeed it should be started before test results
are returned if the patient has a high probability of being infected.

Other medications

Often patients will have severe headaches, fever and nausea in the first
week or two, and these can be controlled by normal non-prescription
medicines. In some cases medical staff may prescribe additional programs
of medication to help with liver or kidney function, or to support
deficiencies in diet.
Hospital care

In severe infections the patient will be admitted to hospital, and may
need to be intensively supported for a few weeks. Patients can require
dialysis, fluids and painkillers plus help with their breathing. In very
rare cases patients can become psychologically disturbed and may need
sedation for their own safety. The infection is not particularly
contagious and so patients are not usually isolated and can receive
visitors as their condition permits.
General recovery

Recovery can take a while, and a lot of patients find they suffer from
fatigue and depression for a few months after recovery, requiring
support. Maintaining a healthy diet with all the proper vitamins and
minerals is very important during recovery, and patients that feel
fatigued should rest as much as they need to – fighting it off and
continuing to work can make recovery a lot slower.

¶ Minnesota health officials last week reported the state’s first death from Rocky Mountain spotted fever, as well as the state’s second-ever case of brain inflammation from the Powassan virus _ similar to West Nile, but spread by ticks instead of mosquitoes.

¶ Officials are also watching to see if the lone star tick, which can spread a Lyme-like disease, establishes itself permanently. The tick until recently wasn’t often found north of southern Iowa, but about a dozen have been identified in Minnesota this year. So far, no infections have been reported.

¶ Scientists aren’t sure why tick populations are expanding, but many suspect one factor could be that subtle changes in the climate are tipping the ticks’ complicated ecosystems toward expansion. The Minnesota Health Department has applied for a grant to study how climate change is affecting the state’s tick population, and Wisconsin is seeking funding for its own study.

¶ “We think about climate change all the time,” said David Neitzel, a Minnesota department expert in insect-borne diseases. With climate change, he said, “There is going to be a change in all the diseases we work on.”

¶ Deer ticks are a well-known threat to infect humans with their bite. Lyme disease, the best known infection spread by ticks, can result in fever, headache, fatigue and rash, and if left untreated can linger and spread damage to joints, the heart and the nervous system.

¶ Rocky Mountain spotted fever is spread by the American dog tick, also called the wood tick. While the tick is common in Minnesota, the bacteria is considered very rare here. Nationally, most cases are in the southeastern U.S. The symptoms include fever, vomiting, severe headache and a distinctive spotted rash.

¶ While none of the Upper Midwest states do a comprehensive tick census, they track the spread of ticks by following up on confirmed disease cases, doing some of their own sampling and identifying ticks sent in by the public.

¶ In Minnesota, deer ticks have expanded to the northwest from the traditional high-risk areas of eastern and central Minnesota. Neitzel said he’s seen it personally on his property in Becker County.

¶ “I’ve been stomping around up there since the early 1970s, but in just the last few years we’re seeing black-legged ticks up there,” he said. Deer ticks are also known as black-legged ticks.

¶ Canadian health officials report a growing deer tick population just north of Minnesota’s northern border, where there were none in the early 1990s. In Wisconsin, the ticks are marching from the northwest to the southeast. And in Iowa, the deer ticks are moving from the northeast toward the southeast and the center of the state.

¶ “We’re watching it, and certainly we’re concerned,” said Dr. Patty Quinlisk, Iowa state epidemiologist.

¶ The number of Lyme disease cases has been climbing in each state since 1993, according to figures from the Centers for Disease Control and Prevention. The number of cases more than doubled from 2000 to 2007 in all three states, reaching 1,814 cases in Wisconsin, 1,238 cases in Minnesota and 123 cases in Iowa.

¶ In Canada, government health researcher Nicholas Ogden found that in the early 1990s there was only one area infested by the ticks. Now, there are tick populations all along the northern border of Minnesota and the northeastern United States.

¶ “Recent studies have suggested that the risk of exposure to Lyme disease is emerging in Canada because the range (of the black-legged tick) is expanding, a process that is predicted to accele rate with climate change,” he wrote in a June 2009 article of the Canadian Medical Association Journal.

¶ Melissa Kemperman, an expert in tick-borne diseases with the Minnesota Department of Health, said a changing climate can affect many variables for the ticks. “It’s not just the heat and humidity,” she said.

¶ For example, if birds and mammals move into new territory their ticks could hitch a ride. If that new habitat has plenty of food and shelter _ and doesn’t get too cold in the winter _ the ticks could get established year-round, she said.

¶ Also, humans can change tick habitat. To cite just one example, Neitzel said, when timber companies cut down an older section of a forest the new growth is better for ticks. There are more ground-level shrubs to live in and more mice and deer on which to feed.

¶ Public health officials say the changes mean anyone who goes into the woods needs to be extra vigilant. It also means that more doctors need to be on the lookout for tick-borne diseases in their patients.

Introduction

Clinical practice guidelines are now ubiquitous throughout the
United States. The National Guidelines Clearing House, under the
category “diseases,” currently lists 2,126 separate guidelines on its
web site. Clinical guidelines are intended to assist physicians in
patient care by clearly communicating the results of the guideline
committees’ evaluation of available therapeutic options. However,
the processes by which individual guidelines are constructed may be
less clear, leading to disagreements between the issuing committee
and the physicians who treat patients-physicians who may well be
as experienced and knowledgeable as the guideline committee.

The 2006 Infectious Diseases Society of America (IDSA)
guidelines for Lyme disease were released in the fall of that year and
were soon the focus of an antitrust suit brought by Connecticut’s
attorney general. A settlement between the two sides was announced
on May 1, 2008; it called for the seating of a new panel and a
comprehensive review of the evidence, including a hearing to allow
for presentation of divergent medical points of view.

This article reviews the 2006 IDSA Lyme guidelines regarding the impact
various recommendations may have on the use of clinical judgment
in the diagnosis and treatment of patients with Lyme disease
Clinical Judgment in the Diagnosis of Lyme Disease

The IDSA in its 2006 Lyme disease guidelines states:
Clinical findings are sufficient for the diagnosis of
erythema migrans, but clinical findings alone are not
sufficient for diagnosis of extracutaneous manifestations of
Lyme disease or for diagnosis of [human granulocyctic
anaplasmosis] HGA or babesiosis.

Diagnostic testing performed in laboratories with excellent quality-control
procedures is required for confirmation of extra cutaneous
Lyme disease, HGA, and babesiosis.

Initially, the statement appears innocuous; laboratory
confirmation of any diagnosis is always reassuring. But here the
guidelines panel goes a step further. By requiring lab confirmation, it
sets up a diagnostic hierarchy in which testing supersedes clinical
judgment, negative results on indirect laboratory assessments of
infection overrule carefully constructed clinical assessments, and
tests are deemed infallible.

Yet, this diagnostic scheme is fallible. Consider the situation in
which 100 patients with undiagnosed Lyme disease seek medical
attention for evaluation of fever, headache, fatigue, and body aches
occurring at the end of June.

Recall that CDC data indicate that erythema migrans (EM) rashes are reported in 68% of patients
meeting the surveillance case definition, and that the guidelines
recommend two-tier serologic testing of patients lacking the
diagnostic rash. In the two-tier scheme, patients are first tested with
an enzyme-linked immunoabsorbant assay (ELISA) or indirect
fluorescent antibody (IFA) test, and those with positive or equivocal
results are then tested withWestern blotting; patients who are negative
on ELISA are not tested further.

Trevejo et al. found the sensitivity of
two-tier testing in early Lyme disease to be 29%-32%; Bacon et al.
found it to be 38%. As Table 1 demonstrates, the laboratory
confirmation requirement is problematic; as many as 22% of early
Lyme disease patients would go untreated.

Clearly, this is unacceptable; patients would be left untreated at the
stage when therapy is most efficacious. Owing to the potential for false
negative results in these circumstances, Steere et al. suggested that
physicians consider treating patients with “summertime flu”
symptoms.

The need for such a suggestion emphasizes the principal
reason for this challenge-laboratory confirmation requirements
undermine the value and primacy of clinical data and may impede care
as would be the case in this very common clinical scenario.

The same problem with laboratory confirmation holds true for late
neurologic Lyme disease. Starting again with 100 patients who have
undiagnosed Lyme disease and objective, non-EM findings, 43%-56%
would bemis diagnosed because of deficits in laboratory capabilities, as
shown in Table 2

In late Lyme, sensitivity of the testing procedure was
found to be 44% by Ledue et al. , and 57% by Dressler et al.
The low sensitivity of two-tier testing in late neurologic Lyme
disease can be traced back to the original paper by Dressler et al.,
from which the Centers for Disease Control and Prevention (CDC)
took its IgG Western blot criteria.

After identifying the 10 bands on Western blotting that yielded the highest specificity in a retrospective
study, Dressler et al. then tested the criteria in a prospective study. In
that study, the paper reports that 21 of 29 patients with
neuroborreliosis had positive IgG Western blot results, yielding a
sensitivity of 72%.
The ELISA used by Dressler et al. had a sensitivity of 79%. Performing the tests sequentially,
as is done in two tier testing, results in an overall sensitivity of 57% (79% x 72%).
With the two-tier sensitivity for late Lyme disease roughly 50%, a negative
result does not inform physicians, but may easily lead them astray.

Other studies on the two-tier strategy yield different and higher
values for sensitivity. Some studies speak of the “relative
sensitivity” of a test rather than the true sensitivity. The
disagreement between studies investigating the sensitivity of various
testing methodologies for Lyme disease indicates a problem with test reliability, which has been the subject of other papers. If the serologic tests for Lyme disease were equally reliable, sensitivity would be nearly identical across studies of similar, and appropriate, design. (A full
discussion on the limitations of serologic testing is beyond the scope of this paper.)

Other methods available to support or confirm a clinical diagnosis of Lyme disease
in the absence of an EM have low sensitivity (polymerase chain reaction [PCR] of cerebrospinal fluid and blood), may be invasive,or are not clinically available.

With serologic testing being insensitive,clinical data-the history and physical
examination-become even more important.Relying on clinical data to make a diagnosis is
not unique to Lyme disease.

One study on the relative values of history, physical examination,and diagnostic studies found that internists used history alone to establish the correct diagnosis in 76% of test cases.
Another found that in distributing a 100% total relative value between these three types
of data, clinical faculty valued history at 63.3%, physical examination at 19.2%, and
laboratory/imaging data at 17.5%.

Such evidence establishes that the diagnostic hierarchy proposed by the guidelines is inconsistent with the way medicine is practiced. A Lyme disease history begins with the potential for exposure. This history,while a key element, is not always enlightening.

Patients may be unaware of whether they live/work/recreate in a Lyme endemic
area; they may forget about vacations in endemic areas. Questions regarding tick bites may lead to inappropriately ruling out Lyme disease; in one study on erythema migrans, only 14% of the patients recalled being bitten by a tick.

Clinically, and in keeping with its multi systemic nature, Lyme disease has been described as being “symptom rich, exam poor.” Symptoms may be specific or nonspecific, mundane or unusual, acute or chronic; some are prognostic. Some physicians have been
criticized for “seeing Lyme everywhere” in that they recognize scores of symptoms beyond EM rashes, Bell’s palsy, and arthritis as being associated with Lyme disease. Yet, early researchers also noted these symptoms. In a treatment trial on early Lyme disease, Massarotti et al. found that subjects reported the following symptoms: 56% had headache; 42%, stiff neck, with 19% having pain with neck flexion; 14%, dysesthesias; 11%, photophobia; and 4%, facial palsy. Consider these symptoms from Logigian et al.

The wide array of Lyme disease symptoms is consistent with ability to infect multiple organ systems;nervous system involvement creates the potential for varied and atypical symptoms. Common symptoms include: EMrash, fever, fatigue, headache, neck pain, joint or muscle pain, paresthesias, memory impairment, weakness of facial muscles, mood disorders,
neuropathic pain. Acompendium of manifestations by system is given inTable 3.

It is the multisystemic nature of the illness that provides physicians with useful diagnostic information. In fact, with the exception of an isolated EMrash or swollen joint, patients with symptoms restricted to a single system are unlikely to have Lyme disease. Recognizing the
potential for disease is different from “seeing it everywhere.” Failure to recognize Lyme disease may lead to serious harm, as antibiotics are delayed and the infection is unchecked.

The nonspecific nature of many Lyme disease symptoms leads some to suggest that such symptoms hold no diagnostic value. Lyme disease is like many other illnesses that present with nonspecific and often subtle symptoms-symptoms that may go unrecognized by physicians. Examples include hypothyroidism, ovarian cancer, and acute subendocardial myocardial infarction. What gives the individual symptoms of Lyme disease value is their occurrence in clusters; a single symptom means little but four or five may, for all practical purposes, make the case. Just as abdominal bloating, urinary urgency, and pelvic pain raise “red flags” for gynecologists, the combination of fatigue, paresthesias, arthralgias, and memory
complaints presenting in a single patient commands the attention of physicians aware of these potential Lyme disease symptoms.

Steere et al. noted that patients with early Lyme disease who lacked an EM rash presented with an average of four or more symptoms. Fever, chills, malaise, and myalgia, all nonspecific, were present in 46%-71% of the patients with definite Lyme disease alone.

In this group, it was the clustering of nonspecific symptoms in the appropriate setting that led to the correct diagnosis of Lyme disease. Logigian et al. also noted the nonspecific nature of identi-fying symptoms: “The most common form of chronic central nervous system involvement in our patients was subacute encephalopathy affecting memory, mood, and sleep, sometimes with subtle disturbances in language.  Diagnosis of this condition may be difficult because the typical symptoms are nonspecific ” [emphasis added].

To provide a clinical level of diagnostic sensitivity higher than two tier testing, physicians need to recognize the symptom clusters and aintain a high index of suspicion for Lyme disease

Symptoms not only form the basis of disease identification, they ay also inform on prognosis. Dysesthesias, paresthesias, ultiple EM lesions, increased irritability, persistent fatigue,
headache, stiff neck, and increased severity of the initial illness ere associated by various investigators in the early Lyme disease reatment trials with an increased risk of treatment failure. Symptoms wre also used in the trials as indicators that a strategy was working
or needed to be altered.

indings on physical exam are usually subtle and limited; they ay be variably present. The more common findings include: olitary or multiple EM lesions, manifestations of cranial
neuritis (such as extraocular palsies, ptosis, decreased facial ensation, facial nerve palsy, decreased hearing), swollen and ender joints, diminished sensation, andmotor weakness.

Cognitive deficits are usually not readily apparent on mental status testing, but patients may be disorganized or slow to respond to questions. A lack of physical findings does not necessarily indicate that the symptoms in those cases cannot be corroborated with objective evidence. Halperin et al. studied 14 patients with complaints of distal paresthesias; 10 had completely normal sensory, motor and reflex findings on examination, three had only mild sensory loss, and one had moderate sensory and motor losscoupled with decreased reflexes.

All underwent EMG testing; 13 ofthe 14 had “significant neurophysiologic findings.” Logigian et al. also found that detailed neuropsychometric testing could reveal cognitive deficits that were not apparent on routine mental status testing. Cost and time constraints do not allow for such complete testing in a community setting, but the studies suggests that with sufficiently detailed testing, objective evidence may be discovered and the subjective data supported. The absence of findings does not equal absence of disease.

Even the EMrash has a variable presentation that may cause less informed physicians to miss it. An EM lesion may have one or more of the following characteristics: homogeneously erythematous color,prominent central clearing, target-like appearance, central vesicles or
pustules, partially purpuric, and not scaly, unless topical corticosteroid creams have been applied or the rash is old and fading.

An EM rash must be distinguished from: tick bite hypersensitivity reactions, insect or spider bites, contact dermatitis,bacterial cellulitis, and tinea. An interesting study in compared responses from physicians in endemic and nonendemic areas with regard to what percentage of EM rashes in their practices had central clearing. Physicians from endemic areas thought it only 19%, while those from nonendemic estimated 80%. The authors did not give a reason for the disparity; possibilities include strain variation or physician experience. The variable presentation of the EMrash, coupled with the fact that it does not manifest in 32% of patients, makes it unwise to rely on EM as the only manifestation of Lyme disease that has clinical diagnostic utility.

Physicians use pattern recognition as a common diagnostic heuristic. These cognitive “shortcuts,” when used properly, allow physicians to move quickly to the correct diagnosis. Pattern recognition transforms exposure, individual symptoms, and the course of illness into a unified diagnosis; it is why some physicians specifically see “Lyme disease” when colleagues see only a generalized “positive review of systems.” For physicians unfamiliar
with the pattern of Lyme disease, serologic testing, combined with clinical data, offers the potential for reaching the correct diagnosis. However, serology alone cannot confirm or deny presence of infection. In Lyme disease, there is no testing shortcut

Furthermore, diagnostic criteria are situational. Clinical criteria are constructed to diagnose and treat ill patients. Research criteria are constructed to test a hypothesis in a uniform group of subjects; researchers have no duty to those excluded from the trial.

Surveillance criteria are much the same, the goal being selection of a homogeneous patient subset that can be observed over time and treatment. The difference between these situations is an important consideration. This distinction is highlighted by these comments from CDC epidemiologist Dr. PaulMead

Aclinical diagnosis is made for the purpose of treating an individual patient and should consider the many details associated with that patient’s illness. Surveillance case definitions are created for the purpose of standardization, not patient care; they exist so that health officials can reasonably compare the number and distribution of “cases” over space and time. Whereas physicians appropriately err on the side of over-diagnosis, thereby assuring they don’t miss a case, surveillance case definitions appropriately err on the side of specificity, thereby assuring that they do not inadvertently capture illnesses due to other conditions.

Recognition of the differing goals allows knowledgeable physicians the discretion to diagnose Lyme disease in patients lacking the five of 10 bands required for admittance into the surveillance group. Failure to acknowledge the distinction results in many patients with Lyme disease remaining undiagnosed and untreated.

Mandatory laboratory confirmation of clinical diagnoses, as advanced in the 2006 IDSA guidelines, reverses the roles of clinical and laboratory data in the diagnostic process and hierarchy. Substituting laboratory tests for physician judgment is not clinically
sound, particularly when laboratory tests lack sensitivity. This recommendation is a change from the 2000 IDSA guidelines on Lyme disease, but the 2006 panel did not discuss the reasons for this change nor cite any references from the literature to support it. Guideline developers have identified the need for reconciliation between new and former versions of the same disease guidelines; the IDSA, itself, endorsed the reconciliation process, yet it did not
occur in this instance.

Clinical Judgment in Management of Patients with Lyme Disease

Clinical judgment is required to appropriately manage patient care. Patient management is an evolutionary process, not a static state; ongoing assessment allows for refinement of the original diagnosis or the search for new one. Lyme disease is no exception to this rule; yet the 2006 IDSA guidelines reduce clinical management to a one-size-fits-all approach quickly chosen from a table. Clinical judgment is especially important when the clinical picture is unclear and laboratory data unhelpful. After careful investigation of other potential diagnoses, physicians may need to perform an empiric treatment trial as a diagnostic modality.The use of such trials extends well beyond Lyme disease. For example, patients with nonspecific
epigastric pain may be offered “GI cocktails” as a means to both diagnose and treat the condition

Clinical decision-making in Lyme disease requires ongoing information; the longitudinal treatment trials on Lyme disease demonstrated the value of this data. Historical and physical
examination data were gathered at defined points; on some occasions the information was used to alter the treatment protocol (investigators withdrew or re-treated some subjects). Followup visits in many of the studies on Lyme disease demonstrated apositive correlation between reported symptomatic changes and subsequent physical findings or test results. Long-term follow-up extending beyond the active treatment phase provides researchers, as
well as physicians in clinical practice, the ability to discern the difference between placebo and treatment effects

Clinical judgment in Lyme disease requires physicians to weigh risk-benefit concerns with individual patients. Treatment risks for the patient include potential adverse effects from antibiotic therapy (including risks associated with medication administration), costs,associated with therapy, and lifestyle changes to accommodate treatment

Patient benefits include improved health with attendant improvement in quality of life and lower medical costs following recovery. Antibiotic therapy, including long-term oral antibiotics, is
generally safe and well tolerated. A meta-analysis on the risks associated with intravenous (IV) access of various types found that peripheral intravenous catheters cause 0.5 bloodstream infections per 1,000 intravascular device (IVD) days while surgically implanted long-term central venous devices-cuffed and tunneled catheters-cause 1.6 infections per 1,000 IVD-days

Data from Lyme disease treatment trials can inform on the risk of IV antibiotic therapy in this patient population. Table 4 reports the complication rates in the treatment groups of Lyme disease studies which used IV ceftriaxone for a minimum of 30 days. Significant adverse events included medication-related events (severe allergic reactions, gall bladder toxicity, Clostridium difficile enterocolitis, renal failure) and catheter-related events (skin infiltration, infection, and thrombosis).

Adverse events in the Fallon study are considerably higher than in the others; reasons are unknown, and the small sample size makes it difficult to draw conclusions. There were three cases of ceftriaxone allergy in the 23 patients; this 13% allergic rate is higher than expected. Thrombi developed in two patients, but the paper does not provide details of the site of the peripherally inserted central catheter (PICC) or its specific type. Additional studies are needed to delineate the risk of IV antibiotic therapy extending beyond 30 days in better detail, and to determine whether there would be opportunities to minimize those factors contributing to the total risk

There are also risks to the patient associated with failure to treat a continuing infection. These include declining health, decreased productivity, a potential for increased costs as more health-related services are required, and costs related to palliative medications (including their potential adverse effects).

The IDSA guidelines raise concerns about the impact longer treatment regimens may have on society. While these concerns should not sway treating physicians who are entrusted with the care of individual patients, the concerns merit some comments. The guidelines authors focus attention on treatment risks to society, citing additional costs and the potential for increased bacterial resistance in the community. However, the authors ignored potential benefits to society from such treatment regimens. These benefits include improved health in the community, increased production from previously ill patients, and potential for success in this patient population to inform treatment decisions in other groups. Additionally, there are societal risks from not treating; these include ever increasing expenses for a chronically ill subpopulation and lost productivity from ill workers

In the individual patient, the decision to treat or to prolong treatment may depend on the length of time between onset of illness and diagnosis; severity of the patient’s presenting symptoms;
presence of neurological symptoms;whether the course of the illness is progressive; whether the illness significantly affects the patient’s quality of life or functional abilities; presence of untreated co-infections; the patient’s immune system status; whether diagnostic tests, symptoms or treatment response suggest ongoing infection; the patient’s response to treatment; which medications the patient can tolerate; the specifics of prior treatment regarding antibiotic type, dose, and duration; whether the patient relapses when treatment is
withdrawn; the risks/benefits of the treatment approach under consideration; and availability of any alternative treatment approaches and their attendant risks balanced against the risks
associated with failing to treat. These highly individualized decisions are best made by the treating physician and the patient

The controversy over antibiotic treatment duration for patients with Lyme disease exists because there is no test of cure, and individual patient responses to specific therapeutic approaches have been highly variable. Lyme disease, in many patients, is marked by
periods when the illness is relatively quiescent. Lacking a test of cure, physicians who do not rely on arbitrary cut-off points are faced with a difficult decision when attempting to determine an appropriate stopping point. Mixed results from the treatment trials add to the uncertainty

The variable response to treatment has been well documented; the causes remain unclear, as scientific evidence in this area is still evolving. Early hypotheses of autoimmune processes have not been substantiated; persistent infection, however, has been demonstrated in case reports and animal studies. Patients with Lyme disease are a heterogeneous group. Genetic variation may play a role in pathogenesis and treatment response. Just as HLA status may be related to treatment response in Lyme arthritis, the response in patients with other types
of Lyme disease pathology may be based on some yet to be discovered genetic subtype

Variation in infecting strains of B. Burgdorferi certainly is a factor. More than 100 strains of Bb have been identified. Certain strains are more virulent and pathogenic than others; instances of antibiotic susceptibility varying between strains is well documented. Coinfections and comorbidities also contribute to the heterogeneity of treatment response seen in Lyme
disease.  Ixodes scapularis is able to carry multiple known bacterial, viral, and parasitic pathogens, and evidence for additional tick-borne pathogens continues to emerge. Different combinations of pathogens require different treatment regimens; failure to identify and treat the specific pathogens causing an illness may partially explain variations in treatment responses

As explained by Kravitz et al., “[h]eterogeneity of treatment effects reflects patient diversity to risk of disease, responsiveness to treatment, vulnerability to adverse effects, and utility for different outcomes.” Kravitz et al. discuss the application of generalized, or averaged, results from treatment trials to the care of an individual patient, and pitfalls inherent in applying them too strictly, noting that “misapplying averages can cause harm, by either giving patients
treatments which do not help or denying patients treatments that would help them.” The individual patient is not a numeric average but, rather, falls somewhere on the continuum of the bell curve and,hence, requires individualized care.

Clinical guidelines should not supplant the judgment of treating physicians. Quality patient care requires the physician to consider management decisions in light of the details unique to each patient. When guideline recommendations are substituted for carefully derived, individualized decisions, there is a potential for harm. The American Academy of Pediatrics policy statement on guideline development recognizes this principle. The document outlines how evidentiary strength and risk-benefit analyses are integrated to yield a specific recommendation level. For example, strongly positive recommendations require benefits to clearly exceed risks, and supporting evidence must be of excellent quality

In this scheme, strong recommendations are not made based on low-quality evidence or expert opinion. Options identify treatment alternatives. Options recognize patient preferences and respect the clinician’s decision-making process. The U.S. Preventive Services Task Force also recognizes scenarios in which the certainty of the evidence is low. In those situations, no recommendation is made, regardless of the perceived net magnitude of benefit or harm.
Additionally, the Task Force advocates shared decision-making between individual patients and their physicians, instead of population-based recommendations, when issues under consideration are highly sensitive to patient utilities.

Guideline committees are not in a position to perform riskbenefit analyses for specific patients. Patient-specific riskbenefit analyses are the essence of clinical judgment. Such
judgments are the domain of individual treating physicians; guideline committees may inform judgments through their evaluation of therapeutic options, but they may not substitute their
judgments for those of the treating physicians. A recent editorial by Shaneyfelt and Centor said as much: “Guidelines are not patient-specific enough to be useful and rarely allow for
individualization of care. Most guidelines have a one-size-fits-all mentality and do not build flexibility or contextualization into the recommendations.” While the 2006 IDSA guidelines contain the typical legal disclaimer that “they are not intended to supplant physician judgment with respect to particular patients or special clinical situations,” formulaic disclaimers cannot overcome the failure of the guidelines to provide treatment options and to recognize the role of clinical judgment in individualized care. These shortcomings cannot be addressed in boilerplate disclaimers; they can only be addressed in the substance of the guidelines.

Available laboratory tests for Lyme disease have poor sensitivity. Treatment trials cited in the guidelines for early Lyme disease were dissimilar, making it hard to compare outcomes;
those for late neurologic Lyme disease involved only 96 patients whose treatment responses can be analyzed. Both the early and late treatment trials yielded poor outcome rates for complete recovery. The prophylaxis recommendation is based on a single study performed under conditions unlikely to be reproduced in community practices, and the list of “not recommended” therapeutic modalities is apparently based on panel opinion. Given the limits
of guidelines in general, and the specific shortcomings of the 2006 IDSA guidelines on Lyme disease, patients and their physicians should be free to act without interference; many may justifiably decide to decide for themselves which strategy to embrace

http://www.jpands.org/vol14no3/maloney.pdf

Elizabeth L. Maloney, M.D. Journal of American Physicians and Surgeons Volume 14 Number 3 Fall 2009

Regards,

Linda

January 15, 2009 News » Cover Story

http://www.csindy.com/colorado/the-tick-and-the-time-bomb/Content?oid=1146343

The tick and the time bomb

While patients wait in pain, a small group of doctors fights for chronic Lyme disease
by J. Adrian Stanley

click to enlarge
Casey Bradley Gent
Bill Rathbun sits in his back room, a storage space for memories from happier times. Even leaning slightly on his elbow causes him to wince.

The back room of Bill Rathbun’s house is dim and small. On this weekday evening, Rathbun is wedged between one side of the room that houses dozens of empty pill bottles, and the other side of the room inhabited by dusty remnants of a past life posters of the Cramps, the Adicts and Frank Zappa withered like bathroom wallpaper.

Rathbun looks strapping. But he can barely lift himself from a chair. At age 40, he sits in the back room, bookmarked between the two chapters of his life.

“It’s very hard to believe this is happening,” he says, cigarette trembling.

Three years ago, Rathbun got sick. His body’s strength and ease of movement was replaced by an incessant, horrific pain. He realized he was in a battle for his health, but didn’t then realize that he had also entered a war in the worldwide medical community. Even after Rathbun tested positive for Lyme disease, he says doctor after doctor looked him straight in the eye and told him he didn’t have it.

Lyme doesn’t exist in Colorado, they insisted. Maybe he had something else. Or maybe he was just crazy.

A cry for help

The scraggly doe appeared frequently on Rathbun’s Manitou Springs lawn. Like many of the town’s deer, she wasn’t skittish. So when Rathbun, moved by sympathy for her pathetic appearance, set out to tame her, he didn’t have too much trouble. Soon she was eating from his hand.

It was 1998, and Rathbun was healthy. He had always worked as a laborer, often putting in long days. But then came one blip in his otherwise stellar health: Around the time he befriended the doe, he broke out in a rash on his chest and came down with flu-like symptoms. After a few weeks, the rash disappeared. It returned a few months later, only to disappear again.

Eight years passed before Rathbun gave the rash any further thought. Hey, the Rathbun men were sturdy. Rathbun’s father and brother were loggers. Early this decade, Rathbun did some logging himself, for about a month in Montana. The rest of the time, he worked in Colorado, where he’d lived since he was 14. Save for a few days in Florida, he didn’t bother to leave the state for vacation.

Time passed peacefully until January 2006, when Rathbun blew a disc in his back lifting a 100-pound door at work. He was treated through workers’ compensation, but couldn’t shake the pain and other, bizarre symptoms that started cropping up. Worried, and finding little help from doctors, he began keeping a journal.

On Dec. 16, 2006, he wrote: “last night, L hand spasming below pinky, on side. Making pinky finger twitch sideways.”

A few months later, he wrote, “Yesterday, sharp pains L ear. On Tues. sharp pains R ear, alternating w/ sharp pain R side of head.”

Rathbun wondered if he had nerve damage. But there were other symptoms. He’d doze off at red lights. He’d get fluttering feelings in his heart, or chest pains so bad they doubled him over. He’d wake up and find that even lightly touching his head caused excruciating pain. He couldn’t sleep. His vision was blurry. His jaw ached and cracked. Sometimes he’d catch sight of something in his peripheral vision, only to turn and find nothing there.

“I thought I was dying,” he remembers. “I thought I was going crazy.”

In early 2007, at the suggestion of friends and his workers’ compensation doctors, Rathbun went to his own doctor to be tested for multiple sclerosis. His doctor sent him to a pain management specialist who ran a bunch of tests and then announced that Rathbun was slightly anemic, had carpel tunnel syndrome and was positive for Lyme disease.

Rathbun didn’t even know he’d been tested for Lyme. He didn’t know what it was. But he was overjoyed.

“I was so relieved,” he says. “I saw a light at the end of the tunnel.”

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Rathbun feeds a deer near his home in 1998.

Roaming the Internet, he stumbled upon a long list of symptoms for Lyme. It described his day-to-day life.

According to the Center for Disease Control (CDC), the Lyme bacteria can cause a red rash, sometimes with a central clearing, within 30 days of a tick bite. If left untreated, the bacteria will spread to other parts of the body, causing a variety of musculoskeletal, neurological and cardiac problems. Over years, it can lead to arthritis, nerve damage or brain damage.

Lyme disease was first noticed in the United States in 1975 when children in Lyme, Conn., began developing arthritis. Doctors later discovered the illness was caused by a tick-spread disease. In 1981, the disease was identified as a bacterial spirochete (a spiral-shaped bacteria similar to syphilis), which was then named Borrelia burgdorferi. The bacteria was found to be spread through the bite of a specific tick, often called a deer tick or a blacklegged tick.

Rathbun’s doctor told him that a routine course of antibiotics would cure him, and referred him to an infectious disease doctor. But the expert looked at Rathbun’s positive test and said it must have been inaccurate, saying there is no Lyme disease in Colorado.

This was the beginning of Rathbun’s nightmare. Suddenly, he was bouncing from doctor to doctor, trying to find one that would treat him for Lyme with long-term antibiotics since a short course of antibiotics given by one doctor was the only thing that made him feel any better. He met with a lot of rejection; even the doctor who originally diagnosed him deferred to the infectious disease doctor. When Rathbun tried to notify the El Paso County Department of Health and Environment of his disease, he was sent away. (Only doctors with patients meeting certain national requirements can report a Lyme case to the health department.)

Dr. David Martz, of Colorado Springs, says this type of scenario is common. Because guidelines for diagnosing Lyme are narrow, many doctors believe Lyme doesn’t exist in many areas, including Colorado.

“If Lyme disease is what the academicians say positive screening blood test, definite tick bite then Lyme disease, if it exists in Colorado, is very rare,” Martz says. “However, if that’s too narrow of a definition of Lyme and a more definitive blood test becomes available, then it may well be that there is lots of Lyme disease in Colorado.”

When local doctors wouldn’t treat him, Rathbun turned to the Internet. And he hit the jackpot.

Victims in the middle

You could spend days, even weeks, reading about Lyme online. There are studies, support groups, forums, medical societies, clinics, patient advocates. But you don’t have to do too much reading to realize Lyme attracts some of the most heated discussions in medicine today even with minimal attention from the media.

There is no disagreement that Lyme disease exists, or that it’s often painful. The debate is about how easily it’s cured, how long it can torment its host, and where and how it may be contracted. And boy, is it spirited, with doctors accusing each other of ignoring patients, or putting patients at risk, or setting up the world for an epidemic.

Most doctors say that treatment-wise, Lyme is barely more trouble than a sinus infection. You get it, you take some antibiotics, case closed. They say one kind of tick can transmit it, and that it’s a problem only in certain parts of the country, particularly the Northeast.

The most famous guidelines on treating Lyme, published by a panel of doctors for the Infectious Disease Society of America in 2006, say that in rare cases, patients can experience something called “Post-Lyme Disease Syndrome” symptoms that linger after the standard treatment. But IDSA doctors say the presence of symptoms in no way proves the bacteria is still alive in the patient’s body. It could be a psychological problem, or a misunderstanding of normal aches and pains, or something else entirely. But, they say, it’s definitely not Lyme.

Dr. Eugene Shapiro, one of the guidelines’ authors and a pediatric infectious disease doctor at the Yale University School of Medicine in Connecticut, says there’s “never been a shred of evidence” that Lyme can survive past the standard 10 to 28 days of antibiotics. If anything, he says, the guidelines probably prescribe more drugs than are needed.

“You don’t continue antibiotics just because someone is tired,” he says.

Shapiro believes doctors who treat Lyme patients with long-term antibiotics are selling their patients hope that they have something curable, or that their symptoms have a name. He also says they’re selling a lot of expensive intravenous antibiotics.

“One of the reasons [patients] get upset is when you say they don’t have chronic Lyme what they hear is ‘You’re full of it,'” he says. “Clearly these patients … are suffering … but there’s something called ‘medically unexplained symptoms.'”

In a 2007 article titled “A Critical Appraisal of ‘Chronic Lyme Disease,'” the New England Journal of Medicine said there is “substantial risk, with little or no benefit,” in prescribing additional antibiotic treatment for Lyme patients who have “long-standing subjective symptoms.”

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Courtesy underourskin.com
The bite of a tick can transfer Lyme bacteria (pictured below). Scientists are discovering that a single tick may transfer several types of bacteria, leading to a range of illnesses. Ticks can be as small as poppyseeds and often go unnoticed.

Then there’s the other camp.

A small, vocal group of doctors say Lyme can sicken patients for years, and even kill them. They say many doctors who are setting standards for Lyme are researchers working too far away from patients and too close to patents. In other words, the mainstream bigwigs are thinking with their pocketbooks, and leaving dissenters open to modern-day witch hunts by state medical boards.

Believers in chronic Lyme tend to be clinicians. They believe the disease is transmitted via several types of ticks, which are all over the country, and the world, for that matter. Left untreated, they say, Lyme bacteria will invade nearly every part of your body, from muscle tissue to the central nervous system to the insides of your cells. They believe the disease can hide in the body and can take months, even years, of antibiotic treatment to kill.

Or it can kill you.

From reading online, Rathbun quickly concluded he had chronic Lyme. He remembered the rash from 1998 and the close contact with the deer, an animal known to carry ticks. And though subsequent Lyme tests came up negative, Rathbun continued to believe the Lyme was there. Hiding in his body. Making him sick.

After searching the Web for support groups and networks of so-called “Lyme-literate” doctors, Rathbun found a doctor who agreed to put him on long-term antibiotic therapy. He’s been on the drugs for over a year. He’s still too symptomatic to return to work his sleep patterns are bizarre, and sometimes his pain is so intense he can barely move. When he’s feeling sick, his body shakes. His memory lapses. A strange red dot appears between his eyes.

Still, Rathbun says, it’s better than it was.

“Occasionally, I feel fairly normal,” he says.

Rathbun now spends his days at home. He tries to force himself to leave the house once a day, however briefly. He says he misses working, and hates that his wife has to support him. Often alone, he spends time surfing the Web. He’s met many friends there, including Tracie Schissel, his “patient advocate.”

“When I found Tracie, it was the biggest relief,” Rathbun says. “It was the first time I’d talked to someone that understood.”

Patients helping patients

Minnesota would curse Tracie Schissel and her family.

But she didn’t know that when she moved there in 1987, toting her 4-year-old son. She was in her early 20s, a vibrant young woman. She entered school to become a cop, got engaged and convinced her parents, brother and sister to join her in Minnesota.

She and her family spent long afternoons gardening. She went camping and hiking in the lake-spotted wilderness. And she pulled tick after tick off her body and that of her son.

In 1989, she started having gastrointestinal problems, chronic fatigue and depression. Then in 1992, she was diagnosed with Crohn’s disease, which strikes the digestive system. It forced her to quit the police force in 1994, after only two years on the job. She suffered through six bowel obstructions.

“I’d be hospitalized for seven to 14 days, until my bowels would open up,” she remembers.

By 2005, Schissel had been working for a medical center for years, and was training to become a sleep lab technician. One day, she noticed what she thought was a spider bite. It was inches across and seeping, and antibiotics didn’t seem to help. Then she noticed a rash when she got out of the shower. Finally, her left knee began to swell.

Tests for Lyme came back positive, and Schissel was prescribed the normal short-term antibiotics. But she still felt sick when the pills were gone, and wanted more treatment. It took her months to get on long-term antibiotics.

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The actual Lyme bacteria is similar to that of syphilis.

She wanted to use her job to reach out to others, and help them recognize their symptoms, get tested and get treated. She started bringing literature to the doctors she worked with.

“Here I’ve got a PIC line in me [for Lyme antibiotics] that’s a catheter that goes all the way to your heart,” she says. “I’m somebody that works there. I would have doctors just look at me in the most arrogant and condescending way, and they would actually throw the information away while I was standing there. That’s when I knew we had a long road.”

A short time later, Schissel was on the phone with her sister, Leslie Wermers, describing the symptoms of her new diagnosis. Wermers had her own symptoms matching the Lyme profile she’d even had the characteristic rash in 1996. Back then, a doctor told her that he couldn’t diagnose her with Lyme because he couldn’t find a tick on her. (That, of course, was false.)

Remembering this, Wermers quickly had her records transferred to her sister’s doctor. Buried in her medical file was a positive test for Lyme disease. Wermers’ doctor had never told her about it.

“She never knew for 10 years that she had a positive,” Schissel says. “What if a patient came back positive for cancer, and they didn’t tell you?”

Wermers’ doctors had long suspected multiple sclerosis and had given Wermers an annual spinal tap for 10 years. By 2006, Wermers had lesions on her spine, brain, lungs and liver.

Schissel’s doctor tested Wermers for Lyme. She was positive. Now, both sisters were on long-term antibiotic therapy. And both sisters were mad as hell.

Together, they started the Minnesota Lymefighter’s Advocacy, with the intention of helping other Lyme patients in their state. But, through the Internet, they ended up helping patients from all over the world. They gave out information on chronic Lyme disease and connected patients with Lyme-literate doctors.

In the meantime, Schissel was slowly getting better. She began having normal bowel movements for the first time in about 17 years. Wermers came to stay with her sister for periods of time. Schissel would dutifully change Wermers’ positions at night to prevent her sister from getting bed sores.

“She would wake up and say, ‘I love you, Sis,'” Schissel remembers.

On Nov. 2, 2008, Wermers’ heart swelled while she slept. She never woke up. She was 41.

The doctor is in

In areas where Lyme is endemic, hunting chronic Lyme doctors seems to be an emerging sport for state medical boards.

Dr. Joseph Jemsek, a chronic Lyme physician who was taking an average of 80 new patients per month, was investigated by the North Carolina Medical Board and given a one-year “suspension with stay,” meaning he could continue to practice as long as he met stipulations.

Dr. Charles Ray Jones is in the midst of two legal battles with the Connecticut Medical Board. In chronic Lyme circles, he is considered the premier expert on treating children with the disease.

The situation has driven many doctors to hide their chronic Lyme practices from the public, according to patients, doctors and Web sites. Many clinics also don’t accept health insurance, fearing the companies will sue them to get their money back.

Martz, the Colorado Springs doctor, entered the fray several years ago when he stared at his own positive test for Lyme disease.

By most people’s judgment, Martz, now in his 60s, had lived a great life. He graduated from the University of Colorado at Denver’s medical school in 1965, followed by an internship and residency in St. Louis, and a year’s training at Stanford University. In 1970, he began practicing in the Springs, where he says he was consistently the early bird in discovering trends from HMOs to specialized cancer treatment. An internist, hematologist and oncologist, he once served as president of the El Paso County Medical Society, and he directed a local hospice program before retiring in 2003.

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Courtesy Ben Petrick
A few years ago, Ben Petrick played for the Colorado Rockies. Now he barely has the strength to care for his daughter.

In addition to a fulfilling career, Martz had a loving wife, Dee, two children and two stepchildren. But in April 2003, his luck changed.

“I suddenly got sick, and I’ve always been a healthy guy,” he says. “I was an 18-hour-a-day person, sometimes jokingly referred to as the Energizer Bunny of the senior citizens.”

Martz took every test his doctors could think of. But despite symptoms that sometimes left him crawling, they couldn’t diagnose him.

“Two months later, my neurologist said, ‘There’s no doubt that you have ALS. And, in fact, it’s moving pretty quickly. And chances are that within six months you’ll probably be in a wheelchair. And your life expectancy is probably just 2 1/2 years or so,'” Martz remembers.

Martz and his wife, practical people, weren’t interested in chasing a miracle cure. Martz worked on his relationships with family members. He went fishing in Canada. The couple traveled to Kenya for the trip of a lifetime.

But as he got sicker, Martz couldn’t shake a feeling of doubt. His arthritis, body pain and profound fatigue weren’t typical of ALS but they were of Lyme disease. So, even though he’d received a negative Lyme test, he sought “sensitive” testing for it at a controversial California lab called IGeneX.

The lab found him positive for Lyme. Martz started dosing himself with antibiotics.

“Within a month, my energy went from a half an hour of conversation to four or five hours being up around and able to go to Circuit City or something like that,” he says. “Within two months, for the first time, I could cross my legs without having to use my hands to pull them up. And within three months, for the first time in a year, I could get up out of a chair without having my wife pull me up.”

He’s never gotten back to 100 percent, and says there was likely some damage that will never heal. But by the end of the year of treatment, in early 2005, Martz says he was 60 percent of the man he had once been.

In February of that year, Martz opened Rocky Mountain Chronic Disease Specialists with a local friend and fellow retired doctor. The two foresaw a part-time gig, helping some Lyme and ALS patients and gathering information they could later transfer into research papers.

They were wrong. Martz found himself working full-time. His buddy went back into retirement, and Martz had to bring in other physicians, physician assistants and staff. He says he treated 850 to 900 patients from all over the nation, as well as Canada, England, Scotland, Norway and Spain. Much to his satisfaction, Martz noticed that 15 to 20 of his approximately 90 ALS patients were showing measurable improvement on antibiotics. Another 20 to 35 stopped declining.

But in August 2007, Martz closed the clinic.

“I could not stand the 50-hour workweek’s effect on my body,” he says. “In the course of four years, I had four heart attacks.”

Not to mention a bloodstream infection and clots in his lungs.

“It was a devastating decision for me,” he says. “Because there’s no other physician in the world that has been successfully treating ALS except our office.”

But now, Martz is planning four papers. Two concentrate on ALS patients. One describes in detail the symptoms and reactions to treatment of all of his patients, including chronic Lyme patients, and those with ALS, Parkinson’s disease and MS. One paper will focus solely on Lyme in rural Colorado Martz had about 45 patients with Lyme who lived in or around Yuma, on the eastern plains.

After treating so many patients, Martz has his theories about Lyme. Starting with this one: Lyme hides in the body, evading the immune system. As the body tries harder and harder to kill Lyme, that makes the carrier sick.

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Courtesy Tracie Schissel
Sisters Tracie Schissel (left) and Leslie Wermers were treated with long-term IV antibiotics. But for Wermers, the controversial care came too late.

He posits that since Lyme is closely related to syphilis, there’s reason to investigate how it could be spread. He says there’s plenty of clinical evidence that it can go from mother to child in the womb (the IDSA would disagree), but less investigation into whether it could spread sexually.

In short, Martz wants the medical community to take a second look.

“I am not a radical,” he says. “I’m not a zealot. I very strongly feel that this must be approached thoughtfully, and scientifically, and carefully, but I do think that there’s something there, and that we need to take more steps to sort out what it is. And those who don’t believe it and those who do believe it both need to set aside their prejudices and say, ‘Look, these are believable people with very disabling symptoms.'”

Dashed dreams

In 1999, when Ben Petrick was in his early 20s, it looked like he was going to make it. And he almost did. For four years, he was in and out of the major leagues, playing baseball for the Colorado Rockies.

But it didn’t last. His batting average began to drop, and then he fell off the baseball planet.

His dad, incidentally, fell with him. Both tested positive for Parkinson’s.

“We came down with it within seven months of each other,” Petrick says. “I was 22.”

Petrick played with his Parkinson’s pills in his back pocket. He didn’t tell his teammates. But when a fastball tipped off the edge of his catcher’s mitt, he realized he was losing his speed.

So Petrick now lives in Oregon with his wife and baby daughter. His wife teaches school, and he gives paid lessons for kids and lives off disability. He spends most of his day taking care of his little girl, and calls nearby relatives when his symptoms get so bad he can’t handle her.

Petrick should be waiting to die. But he’s holding on to hope, for one reason: Back in 2006, Martz diagnosed him with Lyme disease and put him on antibiotics.

“Within a week and a half, it was like, boom, I started feeling better,” Petrick says.

He cut back on his Parkinson’s meds until the antibiotics started to make him feel sick a common complaint from chronic Lyme patients, which some doctors blame on increased immune response or toxins from the die-off of the Lyme bacteria. So Petrick went off the antibiotics. But now, at 30, he says he’s ready to start them again.

Petrick’s wife, Kellie, believes the antibiotics will make him better.

“In my heart,” Ben says, “I do too.”

The green persuasion

In most cases, Lyme is easily treated with basic antibiotics like amoxicillin or doxycycline. No drugs have been formulated to treat it specifically.

The first vaccine was released in 1998. It flopped, and some patients sued the pharmaceutical company, saying it made them sick.

Tests developed for Lyme are inaccurate, say people on both sides of the argument. Shapiro, the Yale doctor, says they churn out many false positives. Chronic Lyme doctors say they often produce false negatives, because they don’t test for all Lyme antibodies.

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LAura Montgomery
Dr. David Martz stands in a historical medical exhibit at the Pioneers Museum. Medicine does evolve, he argues.

In 2006, as some companies tried to make a buck, the IDSA gathered experts to update its guidelines on treating Lyme guidelines that are still used by many insurance companies to set policy on what they’ll pay for.

It was 2006, and IDSA fielded a lineup of Ivy Leaguers. According to research by Kris Newby, senior producer for Under Our Skin (see “There’s a lot of money being made,” p. 22), nine of 14 of those doctors had received money from Lyme vaccine manufacturers. Four out of 14 had received money from manufacturers of test kits for Lyme or other tick-borne diseases. Three of the authors and three of their universities had patents on those test kits, including Yale University, Shapiro’s employer.

So chronic Lyme believers like to note that the 2006 guidelines recommend testing for patients if Lyme is suspected, even if the characteristic rash isn’t present despite the fact that the CDC says Lyme should be diagnosed based on a doctor’s judgment.

Asked if he felt he had a conflict of interest, Shapiro replies, “Definitely not. Why would I?”

When Yale’s patents are mentioned, he says, “I had nothing to do with it personally in any way, shape or form. I didn’t benefit from it at all.”

The IDSA is also quick to dismiss any allegations of wrongdoing.

“I really think that this is something that’s been brought up by this group of advocates with not a lot of evidence to back it up,” says spokesman Steve Baragona.

Baragona adds that the IDSA hired an individual in 2006 to oversee selection of panels and ensure there are no conflicts of interest. And the IDSA does have other professional societies backing its conclusions, like a panel with the American Academy of Neurology.

But the IDSA panel and the AAN panel shared several members, and were working on the guidelines at the same time.

It was enough to disturb Connecticut Attorney Gen. Richard Blumenthal, whose state is still ground zero for Lyme disease. An investigation he headed produced an out-of-court agreement in May, with the IDSA agreeing to form a new panel to review Lyme guidelines. An ombudsman whose main responsibility is to root out conflicts of interest will oversee the whole process. The IDSA says it’s close to announcing the new panel’s members.

Meanwhile, several states have passed or tried to pass laws protecting chronic Lyme doctors and/or ensuring that insurance companies pay for chronic Lyme treatment. The issue has even been raised in Congress.

Tracking ticks

Between 1992 and 2006, 248,074 cases of Lyme were reported to the CDC. Reported cases increased 101 percent from 1992 to 2006. But the CDC sets high standards for cases of Lyme disease that can be reported higher standards than those needed to diagnose Lyme, in fact.

Between 1992 and 2006, Lyme cases were reported from every state in the union, with a handful from Colorado a small number compared to states in the Northeast.

The chronic Lyme community believes Lyme is extremely underreported and has spread to every state and many other countries. Bacteria are being discovered that are closely related to the Lyme bacteria, cause the same symptoms as Lyme, and are spread by ticks different kinds of ticks that live in different parts of the country.

Martz says he had six patients who “clearly got sick after a Colorado-based tick bite.” In Boulder County, Mary Parker says she found a swollen bite on her body after hauling wood outside her home. She came down with the characteristic rash and was diagnosed over a year later. Several of her neighbors, and her dog, got Lyme, too, she adds.

In fact, many dogs in Colorado have been diagnosed with Lyme. Results from a single veterinary test facility, IDEXX labs, combined with telephone surveys and results from veterinary clinics, found 571 Colorado dogs with Lyme disease between 2001 and March 2007.

During the same time period, the CDC recorded one human case of Lyme in Colorado.

Back in his living room, Bill Rathbun paces the floor. He’s having a bad day. The inexplicable red dot has appeared between his eyes. His head tremors involuntarily. His mind wanders.

Rathbun feels like a victim, one of many in a worldwide epidemic. And he blames the mainstream doctors, who he believes are sacrificing his health, and the health of others, in the name of profit.

“I just can’t believe these doctors are getting away with it,” he says. “I can’t believe it.”

Suddenly, he is stuck on history. World War II. How the Holocaust went unnoticed by the world for so long, only being revealed when soldiers opened the gates to the death camps.

“When Hitler said people will more easily believe the great lie than the small lie,” he says, “he knew what he was talking about.”

stanley@csindy.com

While it is not unusual for a person to respond to a particular, single treatment, most often what seems to be an incorrigible health problem must be tackled from many different sources at once, say, nutritional, medical, Candidiasis treatment, allergy treatment, chelation therapy, and so on, depending upon the person and the problem.

The unlucky invasion of Borrelia burgdorferi, the spiral-shaped microbe injected by at least one species of tick, Ixodes scapularis, seems to present the unwitting victim with arthritic symptoms that also may require more than one approach for its solution. Thankfully, if diagnosed early enough, antibiotics can easily wipe out the invading population, and bring about swift remission. The antibiotics, of course, should be heavily accompanied with Lactobaccilus acididophilus1, so that while treating the Lyme Disease, we do not also unwittingly bring about a fungal infection of Candidiasis.

There are about 1,200 cases of Lyme Disease reported across the United States each year; there were 1,282 cases reported in 19934.

The disease remains concentrated along the coastal plain of the Northeast and mid-Atlantic region, in the upper Midwest, and along the Pacific coast, although the disease has been reported in 32 states.

In a Science News report, researchers at the University of Connecticut Health Center in Farmington and the Yale-New Haven Hospital examined 70 children diagnosed with Lyme Arthritis Disease and found that only 53% actually harbored the Lyme-causing bacterium Borrelia burgdorferi. The remaining 47% had been misdiagnosed.4

There is some hysteria regarding the incidence of this disease, possibly due to extensive adverse publicity. One thousand two hundred and eighty-two cases out of perhaps several hundred thousand with tick bites is not exactly a national emergency, although for a percentage of those afflicted, the disease can be rather significant and even catastrophic.

Lyme disease has the following symptoms: begins with reddened area that doesn’t itch, resulting from tick bite, but expands over time, measuring several inches across; clearing of bite area begins in center resembling a bull’s-eye; flu-like symptoms: chills, fever, fatigue, joint and muscle pain; may develop a rash which disappears in a few days; may have tingling and numbness; non-symmetrical joint problems; other symptoms may also occur; sometimes sensitivity to light, stiff neck, headache, sleepiness, mood changes and memory loss; swelling and aching joints for months or years at a time; and vague, migrating musculature pains.

The characteristics of Lyme Disease were first laid out in 1975 when two mothers were told that their children had Juvenile Rheumatoid Arthritis. The name “Juvenile” does not distinguish it’s clinical pattern from that of “Adult” Rheumatoid Arthritis, but merely tells the parent that this horrible, crippling disease occurred in their child, a fact that most parents already know. What is new is the diagnoses of “Rheumatoid Arthritis.”

These two mothers soon learned that many other children and adults in their geographical region were afflicted with the same symptoms, and since Rheumatoid Arthritis does not seem to cluster in a regional geography (with some exceptions), Dr. Stephen E. Malawista of Yale University, among others, began to look for a source of this apparently new disease. Dr. Malawista discovered that many of his patients suffered from a range of symptoms among which might be those that resembled Rheumatoid Arthritis.

The cause of Lyme Disease was determined to be a microbe transmitted by a tick, in this first instance, from the species Ixodes capularis. Since this tick was common in the grasses and woods near Lyme, Connecticut, the cluster of symptoms obtained the name “Lyme Disease.”

As Dr. Willy Burgdorfer, who worked for Rocky Mountain Laboratories in Hamilton, MT, identified the damaging microbe, the bacteria was named Borrelia burgdorferi, which is a spiral-shaped bacterium similar in shape to the spirochete, Treponema pallidum, which causes syphilis.

Since this initial set of discoveries, it’s clear that similar diseases have existed in Australia, Africa, Europe and Asia. It also appears in every one of the states in the United States, but seems to be particularly common in northern California, Minnesota and the northeast.

Infection by Borrelia burgdorferi occurs chiefly in the spring, summer or early fall, because of the life cycle of the Ixodes scapularis tick.

Three Stages of Borrelia burgdorferi

There are three stages to the life cycle of the tick, and at each stage they have a favorite host, although they will attach themselves to a range of animals, including the human species.

The larva from Ixodes scapularis emerges in the summer from eggs deposited in the spring, and attaches itself to a small vertebrate such as a white-footed mouse, where it imbibes its first meal. If this mouse is infected with Borrelia burgdorferi spirochetes, the larva feeding on the mouse’s blood will also become infected.

Later, the larva molts into a nymph, and during the spring and summer (usually mid-May through July) this nymph takes a second meal. If the larva was infected, it may very well pass Borrelia burgdorferi onto its second host. This nymph is now about the size of a small seed, say, a poppy seed, and is responsible for most human infections.

The nymph molts again, and by October is the size of a larger seed, like an apple’s. Again this tick feeds, at least by winter or spring, and they also mate to produce eggs that begin the cycle all over again. Usually ticks do their mating on white-tailed deer, which is why they are referred to as a “deer tick”.

In some regions of the United States, between 15 and 30 percent of the Ixodes scapularis nymph and adult ticks are infected with Borrelia burgdorferi — some 50 percent of adult ticks are infected. The adult ticks are more likely to infect humans because they have had more opportunity, throughout their life-cycle, to do so.

About 1 to 3 percent of adults who are bitten by the infected tick contract Lyme disease, meaning that a high percentage of those infected are able to master the infection.

The tick attaches itself to the skin of its host, where it takes its meal of blood. At this time Borrelia burgdorferi begins to multiply in the gut of the tick, whence it crosses into the tick’s circulation system, migrating to the salivary glands and passing with the tick’s saliva through the host’s skin.

A tick must be attached to its host for 36 to 48 hours before an infectious dose of Borrelia burgdorferi is transmitted. This is fortunate, because most folks who are bitten by a tick will find it prior to the infectious event.

Lyme Disease Symptoms

Those infected by the bacteria Borrelia burgdorferi usually have a set of characteristic symptoms:

Stage I Symptoms

About 60% will notice a round rash called an erythema chronicum migrans (ECM), as doctors like to have a nice, neat name for everything they observe.
Three days to a month later there will be a redness at or near the site of the tick bite.
The reddened area does not itch or hurt, but it will expand over time until it may measure several inches across.
There is a clearing that begins in the center, as the rash enlarges, resembling a bull-eye. Some may acquire the rash, but fail to see these characteristics because of the bite’s location.
The rash may disappear within weeks or even days.
Days or weeks later, a variety of other early symptoms affecting many areas of the body appears, and these symptoms are thought to be from the spread of the spirochete to many different tissues through the blood stream. The symptoms will include flulike symptoms, such as chills, fever, fatigue, joint and muscle pains, and loss of appetite.
Stage II Symptoms

Weeks to months later, about 10% of those afflicted will experience transient heart dysfunction. There will be varying degrees of heart blockage. Neurologic abnormalities include headaches, profound fatigue, meningitis, cranial nerve problems (neuropathies), including fascia palsies, and sensory and motor nerve problems.

Cardiac problems occur with 5 to 10 percent of those infected, if they have been untreated. Usually this condition is not noticed by the infected person, but can be detected by a physician. The heart irregularities persist for but a week to 10 days and probably will not require the use of a pacemaker.

Early symptoms may also include mild musculoskeletal disturbances, where patients complain of vague, migrating pain without swelling in muscles, tendons or joints. The jaw, the temporomandibular joint, may be affected. These symptoms, too, will decrease in weeks to months.

However, in about a half a year after the initial infection, 50% of those infected (without treatment) will suffer episodes of obvious arthritis, including the symptoms of swelling and discomfort in one or more joints, but often the knee.

Stage III Symptoms

Ten percent of those who reach the “arthritic” point will go on to suffer chronic Lyme Arthritis. These patients will find joints swelling for months at a time, or certain joints will become enlarged and achy for a year or more.

In these latter stages, joints, the central nervous system and the skin may be involved. Arthritis can develop from a few weeks to several years after Stage I. Sixty percent suffer at least one episode of arthritis if untreated. Usually the joint arthritis is but one-sided, and migration of the joint pain may prefer the larger joints, especially the knees.

Attacks may last for weeks or months, although they may also become less frequent over time and eventually disappear, leaving about 10% with damaged joints.

Sometimes neurological problems also appear, in about 20 percent of untreated patients, including Bell’s palsy. Bell’s palsy is one of our listed “Rheumatoid Diseases,” a collagen tissue disease, and so there must be more than one causation for that affliction2.

Other neurological afflictions include meningitis (sensitivity to light, stiff neck, headache), encephalitis (sleepiness, mood changes, memory loss), and radiculoneuropathy, where the roots of nerves that stem from the spinal cord to the periphery of some level of the body becomes irritated. These regions may be painful, tingle, or even go numb.

In traditional Rheumatoid Arthritis, a joint affected on one side of the body will also have a matching joint affected on the other side of the body. This is not true for Lyme Arthritis where only one joint may be affected on one side of the body.

Although the skin, heart, joints and nervous system are usually targeted, as the Borrelia burgdorferi bacteria can invade any system in the body, every organ or system in the body can also produce its own variation of symptoms. This ability to invade all human systems, too, is a similarity to the syphilis spirochete.

Traditional and Untraditional Treatments

Thankfully, if diagnosed early enough, antibiotics can easily wipe out the invading population, and bring about swift remission. (The antibiotics, of course, should be heavily accompanied with Lactobaccilus acididophilus1 so that while treating the Lyme Disease, we do not also unwittingly bring about a fungal infection of candidiasis.)

The key to solving Lyme Arthritis is early diagnoses and antibiotic treatment. Early diagnoses can be difficult, especially when the characteristic rash is not present. Since flulike symptoms can arise from many different sources, as described in Dr. Paul Pybus’ The Herxheimer Effect3, it becomes most difficult for a physician to make an early diagnoses. The patient’s history, especially their recent exposure to woods, ticks, and bites, and especially noting the characteristic bulls-eye lesions on the skin, all are most important for early diagnosis.

Although a definitive test for Borrelia burgodrferi bacteria is possible, the test is presently a low-yield procedure. A direct examination of body fluids and tissues is not recommended because there will be so few organisms found. There are no blood tests that can make an early diagnoses of Lyme Arthritis within the time length required for an early diagnosis, although surely someone, somewhere is working to develop such an early test, probably based on DNA of the microorganism. The study of body serums, serology, using indirect immunofluorescent assay or enzyme-linked immunoabsorbant assay has a slow antibody response and is positive in but 50% of Stage I infections, and should antibiotics be used, the test is often aborted.

Since Lyme Arthritis is potentially disabling, extreme vigilance must be taken by those who traverse woods and grasses, but overall, it may not cause serious problems for more than 10 percent of those who have received Borrelia burgdorferi through a tick bite.

Many who think they have Lyme Arthritis actually suffer from other forms of disease states, but among those who are found among the 10 percent seriously affected, there seems to be no good solution to the problem, because, after the early stage of the disease, antibiotics seem to be ineffective.

The primary problems with traditional treatments consists of the following: (1) Inability to diagnose the disease early without specific noting of the bulls-eye lesions, or having at hand an accurate, clear, case history. This delay affects treatment response by use of antibiotics, and often also causes over-extended usage of antibiotics; (2) Over-extended usage of antibiotics increases overgrowth of organisms-of-opportunity in the intestinal tract, such as Candida albicans, which condition also creates additional disease states, including some that mimic various arthritides forms, and also increases food allergies over time; (3) Many treated cases linger with pain, increasing systemic damage, and lessened vigor over many years, often ending up damaged organs and joints.

There is hope, however.

Alternative Treatments

Anti-Amoebic (Anti-Microbial) Treatment

Gus J. Prosch, M.D., Jr. of Birmingham, Alabama suggests a trial of the Rheumatoid Arthritis or Rheumatoid Disease treatment protocol as recommended by The Arthritis Fund/The Rheumatoid Disease Foundation: “I’ve seen Lyme Arthritis Disease clear up after using a course of anti-micro-organism drugs as recommended by Professor Roger Wyburn-Mason for Rheumatoid Diseases.

“Although Lyme Arthritis Disease, and other diseases such as Gout, Carpal Tunnel Syndrome, and Tendinitis are not supposed to be the same kind of diseases as Rheumatoid Arthritis, I’ve seen them all respond one time or another to the same treatment we use for Rheumatoid Arthritis.”19

In the case of Lyme Arthritis Disease, Dr. Prosch will give metronidazole (or one of the other 5-nitroimidazoles described) in heavier doses, for a longer period of time than recommended for Rheumatoid Disease.

Artificial Fever and Herbs

Agatha Thrash, M.D. and Calvin Thrash, M.D. write that “About one-third of patients with chronic infectious arthritis derive substantial benefits from fever treatments, one-third derive only moderate benefits, and one-third little or no help.

“In gonococcal arthritis, swelling and pain is often astonishingly helped. Patients suffering from [Osteoarthritis] receive temporary benefit, and the fever treatments may be used along with general arthritis treatment of diet and physical conditioning.”24

The Case of John Woodworth

Agatha M. Thrash, M.D., Uchee Pines Institute, Seale, Alabama was visited by a 54 year old Caucasian with Lyme Arthritis Disease. John had typical symptoms of pain in the joints, neurologic symptoms and specific rash beginning with a small, raised, red area and spreading concentrically outward with fading in the mid-portion.

Dr. Thrash administered a series of 15 fever treatments in which the mouth temperature was brought up to 1030 Fahrenheit as many times as possible during the 15 treatments, each day. John took five treatments, then skipped 2 days and repeated this schedule 3 times.

Dr. Thrash writes: “Once in a great while a person with Lyme Disease does not clear completely with the first series of 15 treatments and must take a second series. This was the case with John Woodworth. We waited 3 weeks between series to give the body a good chance to reset the immune system. Fever enhances the effectiveness of the immune system, but the body adapts to the fever and the response begins to weaken after about 5 days. For this reason we skip 2 days each week and rest 1 to 3 weeks between series.”

John also was given golden seal and echinacea, the first being anti-bacterial, and the second being a boost to the immune system. “The way to make it is by bringing a quart of water to a gentle simmer, adding 1 tablespoon of golden seal root powder and 1 heaping tablespoon of echinacea (chopped whole plant). It should be simmered for 20 to 25 minutes, cooled, strained, and drunk throughout the day. Make it up fresh every day.

“On the first day in chronic cases, and for 5 to 10 days during the acute phase, the patient should take 2 quarts of the tea daily. The patient should also take Nutri-bioticTM (grapefruit seed extract) obtainable from any health food store. Put 6 to 15 drops in a quart of water or tea and drink 2 quarts a day.”

Dr. Thrash says that “We have had several typical cases of Lyme Disease, complete with the tick bite and rash, which have been treated with a series of artificial fever treatments. None of them, including John Woodworth, has had further illness, as long as 2 years follow-up later.”18

Agatha Thrash, M.D., Calvin Thrash, M.D., Home Remedies, Thrash Publications, available from this foundation.

Homeopathic Remedy

According to Stephen Tobin, D.V.M.

Stephen Tobin, D.V.M.,31 is a veterinarian in a Lyme Arthritis Disease infested region. He’s treated many cases of Lyme Disease in dogs, cats and horses.

After trying a number of homeopathic remedies, he settled on Ledum (Genus Epidemicus) in a 200 or 1M potency, three times a day for three days. Dr. Tobin says, “Every animal treated this way has shown immediate improvement, whether they were only recently infected or have had the disease for years, treated or not with antibiotics. A number of pet owners, on seeing how well it cured their companions, took it themselves, with equally good results.

“As a preventative, I use the Borrelia burgdorferi nosode 60X, giving one dose daily for one week, then one dose per week for one month, then one dose every six months, the same way I administer all the nosodes I give in place of vaccinations.

“I have had only one failure in almost two hundred animals so treated. This is more effective than the vaccine for Lyme Disease used in dogs, which often has the effect of producing symptoms of Lyme Disease, including lameness, swollen joints, lethargy, inappetance (lack of appetite), kidney failure, and cruciate degeneration (cross-shaped as in the cruciate ligaments of the knee)

“I have seen no side effects from the nosode itself.”

According to Dr. Catherine Russell

Although rare in Mexico, Dr. Catherine Russell,30 Guadalajara, Mexico, successfully treats Lyme Arthritis Disease just as she would any other arthritis. She uses proteolytic enzymes, niacinamide 500 mg 3 X daily, and homeopathic symptomatic medicine according to individual symptoms and modalities. Sometimes she also uses herbs, especially stinging nettle which she picks and prepares herself, especially when a lot of uric acid is involved.

Venus Fly Trap Carnivora Treatment

Carnivora is an extract of the Venus Fly Trap plant (Dionaea muscipula) that was developed by the German oncologist (cancer specialist) Helmut Keller, M.D.

According to medical reporter Morton Walker, D.P.M.,22 “Since 1981, over 2,000 patients have been treated with Carnivora. Among them has been President Ronald Reagan who received the substance postoperatively following his operation for malignant polyps of the colon. The President took Carnivora drops for their healing and preventive powers against cancer recurrence.”

“Actor Yul Brynner also received dosages of Carnivora in injections and/or Carnivora drops.” Yul Brynner’s lung tumor’s were rapidly diminishing in size until he foolishly followed the recommendation of a New York City oncologist and failed to keep up with the remedy.”

“Carnivora has a proven 82 to 87% remission rate for most types of carcinoma when the patient’s immune system has not been compromised by conventional, allopathic chemotherapy or radiation therapy.”22

As Carnivora is a relatively new product, no one knows how many different organisms it can inhibit, or kill. In addition to its immune stimulating properties, the Carnivora extract “has been used successfully for the treatment of chronic diseases including most forms of cancer, neurodermitis, ulcerative colitis, Crohn’s disease, multiple sclerosis, all types of herpes infections, primary chronic polyarthritis, and almost any immune deficiency state,” and AIDS.

After it’s use, Harvey Bigelsen, M.D. was so impressed with the reduction of pleomorphic organisms in a patient’s blood that he ordered a supply of Carinvora for his own use.22 Pleomorphic organisms are micro-organisms that change form and function depending upon their surrounding environmental conditions.

Dorothea M. Linley, M.D.

Dorothea M. Linley, M.D. says, “In August 1986, I came down with a flu-like illness: pains in muscles, back, headache, fatigue and even my hair was painful. Fever and migrating arthritis followed by cardiac fibrillation which was controlled by oral magnesium. A blood test for Lyme disease was positive. . . .

“It settled in my knees, the left swelling so severely I needed crutches. I took 1 gram of tetracycline daily for 3 weeks and then 2 grams daily for three more weeks. Then my stomach rebelled and it was stopped.

“I was left with 50% reduced motion in both knees. Three months later I learned that the North (negative, south seeking) magnet would reduce swelling and pain. I applied a North pole magnet to both knees for 30 minutes twice a day5. In one week my knee flexion was doubled. In 6 months flexion was almost normal except for something that didn’t feel right in the middle of the joint.

“Two months later I experimented with germanium sesquioxide6. On a dose of 900 mg daily the right knee returned to normal in 3 days and after reducing the dose to 300 mg daily, the left knee took about 2 months to become normal. . . .

“I was 5 years without any symptoms.

“In May 1992 my left knee started swelling and a blood test was positive for Lyme. Whether this was a new case or a return of the first attack I do not know. What I did know was that I had no desire to take antibiotics again. I had just finished treatment for Candidiasis7.

“In mid-July I learned about Carnivora [Dionaea muscipula, Venus Fly Trap plant extract] from Morton Walker’s article in the Townsend Letter [for Doctors]8. I learned that Carnivora would kill bacteria, yeast, parasites and viruses without harming beneficial intestinal bacteria.

“I believe the Carnivora has killed the Lyme bacteria as well as Candida overgrowth. I lost 10 pounds, my skin is younger looking, my bowels are functioning normally for the first time in my life, my fingernails are hard and growing well, and my digestion is improved, needing fewer digestive aids.

“I hope my story will help those many patients suffering from chronic illness which may be due to Lyme. I was fortunate in that I did not take antibiotics until after a positive blood test. Those who treat symptoms clinically typical of Lyme before developing a positive blood test will never test positive and thus obscure the diagnosis. There are many people out there in this situation.”

Dorothea M. Linley, M.D. can be reached at 220 Banks Rd., Easton, Connecticut 06612.

Neurokinesiological Testing and Herbal Remedies of Louis Marx, M.D.

Louis Marx, M.D. Recommended Treatment

Louis J. Marx, M.D.11 combines neurokinesiology as a research and diagnostic tool with herbal programs.

A simple explanation of kinesiology given by Dr. Marx is that “if you touch a blocked acupuncture point while testing a muscle, that muscle will test weak. . . . Kinesiology is a technique for testing the integrity of the energy supply to an organ, as evidenced by a specific muscle. It uses the concept of organ-muscle linkage. . . . Any muscle can be used.

“Neurokinesiology differs from applied and other forms of kinesiology by not relying on the organ-muscle linkage . . . it tests directly through the nervous system . . . Dr. Calvin Alldredge has developed reflex points for the various known and unknown infections, hormonal system, nutritional status and toxic substance. By testing through the nervous system we are getting responses from the body’s innate intelligence.”

In Dr. Marx’s Neurokinesiological Testing and Herbal Remedies, writing on herbal remedies (tinctures or capsules), he says, ” Most programs last about three weeks. Usually, the patient experiences an improvement from a program within a day or two. However, during the third week after beginning a program, the patient may feel a decline in well-being and may develop new symptoms. It is very important to understand what is happening to avoid discouragement and loss of confidence in the treatment.

Insert Here are more books Icon: Louis J. Marx, M.D., Healing Dimensions of Herbal Medicine, available from this foundation; also Neurokinesiological Testing and Herbal Remedies; 3418 Loma Vista Road, Suite 1-A, Ventura, CA 93003

“What really happens is that the herbals have just about resolved those problems being treated, and the immune system no longer has to concern itself with those specific disorders. Therefore, the immune system starts attacking another group of infections, etc. This can happen a number of times with some patients. However, each group of new programs brings more energy and well-being than the prior programs. Expect this and explain it to the patient so they will not get discouraged.

“Sometimes a patient may present a specific complaint and testing identifies a specific factor as causing that complaint. However, after taking the program for that problem, the symptom remains. If you retest, you will identify another basis for the symptom which was not identified in your first examination. It is like the problem has layers to it, and as one layer is uncovered, a deeper one surfaces. Occasionally, you may need to treat two or three factors before there is a final resolution of the complaint. Usually the response is rapid enough and dramatic enough to leave little doubt about the benefit of the herbal programs.”

Dr. Marx, using neurokinesiological testing and herbal remedies, has developed a combination of herbal recommendations for almost every disease condition. These include, but are not limited to, viruses (assorted, intestinal, liver, herpes, wart, immune, life force), parasites, bacteria, Mycoplasma, rickettsia, yeast/fungi, onco genes (involved in cancer), and even the will to live.

Dr. Marx says, “Once you learn the system, you can apply it to any remedy. You can test your foods, supplements, drugs, etc.”

The drops can be put in water or juice, or taken directly into the mouth. The amount of alcohol ingested is negligible, and many reformed alcoholics tolerate the tincture well without inducing a craving for alcohol.

The capsules are best taken after meals. The capsules and tinctures do not need to be taken at the same times of day. All the tinctures or extracts can be taken together. If there are six bottles of liquids to be taken, they all can be put in a small amount of juice. Shake and drink followed by some extra juice to chase down the taste. It is actually better to squeeze the dropper top and squirt out one dropper full. It is more accurate than counting out the drops. That’s because some of the liquids are thicker, therefore, have larger drops.

If the extracts or tinctures are too thick, just add a few drops of water to the bottles.

Most herbal programs contain three bottles — one bottle of cut dried herbs in capsules. There are 70 caps to each bottle. The other two are one half ounce bottles of liquid extracts or tinctures. On each of these bottles are letters AO, RVO, VO, JRVO just before the program name. These letters stand for the extractants used in making the formula. A stands for alcohol, O stands for oil, R stands for rice water, V stands for vinegar, and J stands for fruit juice. T stands for tincture, and so (T)-(AO) stands for tincture of oil in an alcohol base. SPIRO- (L) would stand for the Lyme Spirochete.

Louis J. Marx, M.D. recommends that herbal remedies be ordered from Monastery of Herbs, PO Box 3123, Granada Hills, CA 91394; (800) 352-4372; (818) 360-4871. There are other good sources, but best one check through a health professional, as many herbs are either not what they are supposed to represent, or have been degraded throughout its cycle.

In the case of Lyme Arthritis Disease, Dr. Marx recommends the use of:

(T)-(AO)     SPIRO-(L) @ 30 drops/day for 1/2 Fld. Oz.

(T)-(RVO)     SPIRO-(L) @ 30 drops/day for 1/2 Fld. Oz.

Herbal Blend SPIRO-(L) @ 4 Capsules/day for 50 Caps.

The Case of Pearl Bennette Atkin, R.N., M.A., C.S.

Where Carnivora extract helped one person, it seemed to become a burden for another. Pearl Atkin, RN, MA, CS, Briarcliff Manor, New York, fought against Lyme disease, to win. Healer Atkin10 wrote to Townsend Letter for Doctors for advice in November 1992, saying:

In June of 1984 I attended a professional conference in the wooded town of Armonk, New York. Within a couple of weeks I had flu-like symptoms — aches and pains all over my body, especially a headachy feeling each afternoon, and discomfort in my coccyx area. After the summer cold the aches and pains subsided, but I continued to experience a ‘hypoglycemia-type’ of late afternoon problem, which I took care of with a fruit and nut snack, and sometimes with an ounce or two of vodka.

But even after that, I was still left with an aching coccyx, and at that point I decided my mattress had to be traded for a softer, more luxurious type — such as deep innerspring, or foamy and waterbed types. I had always thought that a waterbed was decadent — until that summer. When I first tried out a waterbed, I was able to get comfortable on it in a second — and my coccyx felt good in any position!

Then, after about six weeks of these unpleasant symptoms, as I was finally sleeping a little more comfortably at night, . . . an official from the conference that I had attended 8 weeks before called to ask how I felt, and asked if I had [any of about 40 symptoms] — and I’d experienced many of them. I had recently turned 50, and felt that [age] was the reason — now I knew differently — I had Lyme [Arthritis] Disease.

I was given the name of a Westchester Lyme [Arthritis Disease] specialist. I called him, then went for a consultation, and told him about my symptoms. Blood was drawn, and I was put on 7-10 days of tetracycline 240 mg 4 times a day. I was informed that, although I had not had the classic bull’s-eye — I had had a rashy welt initially on my forehead that I thought was poison ivy — two weeks later it had spread down to my neck and chin areas — I would know it was ‘Lyme’ if, after taking each tetracycline capsule I would have an exacerbation of the headachy, flu-like symptoms. That’s exactly what happened. I continued taking the capsules until the exacerbation experience stopped — and then for a few more days — which was a total treatment of about 10-12 days. Yet the blood work was negative.

During and for some time after the treatment period, I continued to be troubled, frequently, by the peculiar headaches, though I had hardly ever had headaches before. And these felt different from any I had experienced before. As they were miraculously cured, almost instantaneously, by a shot of vodka, it was my treatment of choice whenever they returned.

That was the summer of 1984. Very gradually, over many months, the headaches became less frequent and less intense. But two years later, in 1986, my headachy symptoms flared again, and I again went on tetracycline 500 mg 4 times a day for 7-10 days. It did the trick this second time also.

Two years later, in 1988, there was a third episode. I had the headachy feeling again, and the doctor gave me a choice of 7 days in the hospital with an intravenous (IV) drip of penicillin (which was the treatment of choice at that moment in time) — or I could try 7-10 days of tetracycline 500 mg again.

I opted for the oral treatment, and took more vodka every afternoon with my snack parties!

The headache receded to a low level that was tolerable and I went on about my life. [During these episodes, the first two measurements for Lyme antibodies (titers) were negative — but I understand that false negatives are common; then a third sample was taken, but that one was lost.]

But now I’m right in the middle of it again — my fourth serious episode. This past summer I went to Eastern Europe on a genealogical tour and when I returned home I had a protracted case of ‘jet lag.’ One day I noticed a rashy welt in my pubic/groin area, and the next day I had 1030 F temperature. I called my gynecologist — but he was on vacation. His ‘covering’ doctor called back, and we ran through the ‘could be’s — and came up with my fourth recurrence of Lyme Disease.

He prescribed 500 mg of tetracyline 4 times a day again for 7-10 days. The temperature and rash were gone immediately! When I called my gynecologist the next week, he said I should continue on the tetracycline for 1 month — that was the protocol for Lyme this year.

By the second week, however, the tetracycline was giving me nausea, queasiness, stomach and abdominal discomfort, and I was having headaches around the clock. So I called a doctor friend (an internist), and he changed me to Amoxicillin (straight penicillin 500 mg 3 times a day), for another 2 weeks.

That treatment gave me back my appetite, and took the worst of the headaches away. But what else is it doing to my poor system? I’ve been taking Lactibaccilus acidophilus1 to counteract the killing of the good intestinal microrganisms.

“. . . I’ve paid no attention to Lyme Disease therapies the last few years, because I’ve had other things to deal with personally and professionally that seemed more important than a ‘hypoglycemic headache’ but now my spotlight [is] on Lyme Disease, . . .”

On December 1993, Pearl Atkin12 described the great help she’d gotten, particularly from Lous Marx, M.D. of California. She wrote:

“I want to let you know how well I’ve been since you published my last ‘Letter [in Townsend Letter for Doctors and Patients] . . . regarding my plea for help with my fourth Lyme Disease attack. Each time I have had a Lyme infection I have been treated with massive doses of antibiotics, but have nevertheless been left with a pattern of recurrent headaches identical to those experienced during the initial acute Lyme episodes. This last time the headaches were so severe that they were disorienting as well as disabling. For several months I could not remember what it was like to have a clear-thinking and pain-free head.”

One of your subscribers, Dr. Dorothea Linley from Connecticut, contacted me with information about treatment that had been successful for her own chronic Lyme infection. She had been working with a nutritionist who advised Carnivora22 (Venus Fly Trap extract) as part of a program that also included many vitamin supplements and glandulars. After I began this program my headaches cleared up about 70%. But each time I opened [and began using] a new bottle of Carnivora I had a recurrence of devastating flu-like symptoms3 — high fever, and head and full body aches for 3 days. After three rounds of this (approximately 3 months) I stopped those treatments, as I decided to accept the 70% remission and live with it!

At this time a physician — Dr. Louis Marx11 — sent a copy of his herbal book to me, having earmarked the page on ‘Spirochetes; Lyme Disease.’ Reading this book, I was impressed with his work of the last 10 years on ‘designer herbals’ (with Dr. Clifford Alldridge), and called him to discuss my situation. He encouraged me to order the Spirochete-Lyme program — but told me to expect that it might not give me 100% relief, and also that I might need to do several more herbal programs, as one layer of disorder after another required attending to. . . .

“Within three days my headachy feeling that I have lived with for years was gone — and my head was clear as a bell! It was unbelievable, and extremely pleasurable.”

Pearl Bennette Atkin, RN, MA, CS can be reached at 85 Aspinwall Road, PO Box 950, Briarcliff Manor, New York 10510, telephone (914) 941-8926.

Nutritional and Immune Support

The Case of Sarah Statesmyer

Sarah Statesmyer, age 16, came to the office of Robin Ellen Leder, M.D.,29 in Bronx, New York, complaining of severe fatigue and episodes of debilitating joint pain, especially in her knees. Low energy made it extremely difficult for Sarah to do her work at a law firm on her bad days. She felt like she could barely walk. Her symptoms, she reported, had been ongoing since childhood.

Sarah’s parents thought her problem stemmed from a tick bite years earlier, but a blood test was only suggestive of Lyme Arthritis Disease, and was not conclusive, probably because of the time that had passed since Sarah’s first exposure to the Borrellia burdorfi organism. However, because of the described symptoms and probable history of Lyme Arthritis disease, this condition was considered to be the most likely cause of Sarah’s problem.

Dr. Leder discussed traditional, possibly long-term, antibiotic therapy with Sarah, and also the importance of supporting the immune system in chronically symptomatic Lyme Arthritis Disease patients.

Sarah and her family chose to begin treatment using the nutritional approach offered by Dr. Leder.

To help design a diet that would benefit Sarah, Dr. Leder began by having Sarah take a six hour glucose tolerance test and a special blood test for food allergies. She was found to be quite hypoglycemic (tendency to low blood sugar), and also to have sensitivities to a number of foods.

Sarah’s diet was changed and she was required to eat a minimum of five to six times per day, and every meal or snack was to include some form of protein. All foods that Sarah was allergic or sensitive to, according to her blood test, were eliminated from her diet.

Dr. Leder, according to her custom, also asked Sarah to eliminate other common foods that have a history of being allergenic, even though they were not on Sarah’s list, and, in addition, to cut out any other foods that had any remote history suggestive of allergy.

A broad spectrum of nutritional supplements and plenty of water completed Sarah’s program.

“With the help of an exceptionally supportive family, Sarah’s symptoms literally disappeared, her energy was restored to a level normal for a healthy young woman, and, during several months of follow-up, no further flare-ups of her joint pain occurred.”

Universal Oral Vaccination

When former Iowa Congressman Berkley Bedell13 testified before the U.S. Senate Health Appropriations Subcommittee Chaired by Senator Tom Harkin, also of Iowa, on June 24, 1993, he gave witness to a powerful and obviously safe method of solving Lyme Arthritis Disease. (See beginning of this chapter.)

He described a procedure whereby the killed bacteria, Borrelia burgdorferi, was injected above a cow’s udder, above the base of the teat, (where the antigen or allergen is sure to reach the cistern) prior to the birth of her calf. Colostrum — the cow’s first milk after the calf is born — is processed into whey — the liquid left after milk has been coagulated by the aid of a coagulating enzyme called rennet.

Congress Bedell also gave witness to the effects of an over-powerful, suppressive governmental organization that would prevent people from trying every 1-1/2 hours for a few weeks the whey of this milk to learn if their Lyme Arthritis Disease will disappear. He reports that the company that cured him “dares not sell such a medicine, because of FDA regulations.”21

Later the same farmer that cured Congressman Bedell of his Lyme Arthritis Disease prepared a homeopathic remedy which, Bedell reports, had 80-90% success in treating patients for whom conventional treatments had not been effective.

When specific personalities in the U.S. Department of Agriculture were shown in court to have falsified data regarding this patent — apparently as part of governmental suppression (although according to one source there may have been personality conflicts also) — it became only the second patent in U.S. history to receive by vote of U.S. Congress an additional 16 year lifetime protection.

On April 2, 1968, a patent number 3,376,198,23 “Method of Producing Antibodies in Milk,” was granted to William E. Petersen, St. Paul, MN and Berry Campbell, Monrovia, California, assigned to Collins Products, Inc., Waukon, Iowa. Other patents for additional discoveries have since been granted to Mary E. Collins and Robert A. Collins (Patent No. 4,402,938; September 6, 1983; Gregory B. Wilson and Gary V. Paddock (March 28, 1989); Robert A. Collins and Philip F. Weighner (Patent No. 4,843,065; June 27, 1989); Robert Collins K (Patent No. 5,102,669; April 7, 1992)

The original work on development of the cows’-milk vaccine was performed at the University of Minnesota, School of Biochemistry under the direction of the patent assignees. (Porter: Biological Abstracts 1953, p. 951, par. 10, 185). In August, 1951, Dr. Porter, then “working on his doctoral thesis, suggested the possibility of manufacturing antibodies in the cow’s udder by infusion of antigen into the udder of a lactating cow.” (Patent No. 3,376,198)

A spokesman for a group that prefers not to be identified, says that the protective element “seems to be a system of peptides that is produced by the cow. . . . Basic research beginning in the late sixties was directed to identify the active products (biological and chemical) in the whey product. This has proven very difficult and especially because the activity is not an antibody per se, but appears to be the action of a low molecular weight material.

“Several important activities can be found in the product that is produced by infusion of specific antigens into the udder (above the udder into the cistern) of a cow after collecting the colostrum and milk for the final product production. These are being researched.

Many people have used the product, and it seems not to matter whether the cow’s colostrum is used, made into whey, the cow’s milk is used, or a homeopathic remedy is prepared, whether or not pasteurized, whether or not lypholized, or pasteurized and lypholized — all are effective, although transfer factor, an additional protective substance, as described in one patent seems to be of higher yield in the colostrum.

Reminiscent of what has become the routine human use of dimethylsulfoxide (DMSO) or antibiotics restricted by law to veterinarians and those practicing husbandry, marked “Not For Human Use,” some dairy farmers purchase products for their animals’ disease protection, but use the products on themselves with success.

Those with access to a cow can purchase standardized antigens (killed) or allergens from biological supply sources which can be inoculated through the cow’s udder or into the base of the udder (into the cistern) at the proper time before calving. A variety or blend of organisms or substances — pollen, cat, dog, or cow hair if one is allergic, or specific antigens against a given disease condition — will result in a milk product that will cure and protect from an equally large and varied number of pathogenic organisms or allergens, respectively.

In homeopathic remedies produced by Beaumont Bio-Med, Waukon, Iowa, conditions aided are Rheumatism, Rheumatoid Arthritis, coughing, respiratory, sore throat, skin conditions, acne blemishes, upset stomach, cold and flu, diarrhea and impetigo.

See Universal Oral Vaccine, Anthony di Fabio, this foundation.

A few homeopathic remedies based on the described principles can be obtained from Beaumont Bio-Med, PO Box 6, Waukon, Iowa 52171; (800) 332-2249.

As a general principle, this method will vaccinate safely against any allergen or antigen — any substances which when introduced into the body create antibodies such as allergenic pollens, house dust, animal hairs, or micro-organism proteins.

According to Patent Number 3,376,198, antigenic protections can be developed against “bacteria, viruses, proteins, animal tissue, plant tissue, spermatozoa, rickettsia, metazoan parasites, mycotic molds, fungi, pollens, dust and similar substances. . . . exemplary antigens include: bacterial — Salmonella pullorum, Salmonella typhi, Salmonella paratyphi, Staphylococcus aureus, a Streptoccus agalactiae, g Streptococcus agalactiae, Staphylococcus albus, Staphylococcus pyogenes, E. Coli pneumococci, streptococci, and the like; viral — Influenza type A, fowl pox, turkey pox, herpes simplex and the like; protein — egg albumin and the like; tissue — blood and sperm.”

Protected, according to this and a later patent, were mice, cows, goats, chickens and pigs.

For allergy prevention, one can use a mixture of hair (cats, dogs, cattle), making a vaccine. (Many milk-producing farmers become allergic to cow’s hair.) Other allergens, such as pollens, can also be introduced, such that many other allergies can be beneficially affected.

It’s also good for chickenpox, cold sores, genital herpes, Cryptocides sporidium, and for anti-inflammatory conditions, as it is heavy with complement and anti-complement (C3B), substances that assist in the destruction of invasive organisms.

In work supported by the National Institutes of Health and by Philip Morris Cos.,27 “A modified version of a protein extracted from whey blocked the AIDS virus from infecting cells in the test tube,” according to Dr. Robert Neurath, head of the laboratory of Biochemical Virology at the Lindsley F. Kimball Research Institute of the New York Blood Center.

“Scientists modified a whey protein called beta-lactoglobulin to produce a substance called B69, which they discovered latched onto a protein structure called CD4 on the surface of cells.” This prevented AIDS virus from using CDS as an entryway into the cells.

Dr. Jeffrey Laurence, an AIDs researcher at Cornell Medical College in New York, cautioned that HIV can infect some cells without using the CD4 gateway.

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According to a source,23 “One North Dakota support group uses this substance for multiple sclerosis with beneficial results.”

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In a 1984 study reported in Medical Microbiology and Immunology32 IgA-rich cow colostrum containing anti-measles lactoglobulin resistant proteases was orally administered to patients with MS. Measles-positive antibody colostrum was orally administered every morning to 15 patients with multiple sclerosis at a daily dosage of 100 ml for 30 days. Similarly, measles-negative antibody control colostrum ( < 8)was orally administered to 5 patients. Of 7 anti-measles colostrum recipients, 5 patients improved and 2 remained unchanged. Of 5 negative (< 8) recipients, 2 patients remained unchanged and 3 worsened. These findings suggested the efficacy of orally administered anti-measles colostrum in improving the condition of MS patients (P < 0.05).

The Case of Dorothy Johnson

Dorothy Johnson,28 49 years-of-age, was diagnosed at the Mayo Clinic with multiple sclerosis, a slowly progressive Central Nervous System disease characterized by patches of demyelinated nerve tissue of the brain and spinal cord. Demyelination is the loss of insulative protective tissues that surround nerve tissue.

Dorothy suffered from varied and multiple neurological symptoms and signs, such as shakiness, numbness in legs, difficulty in climbing stairs, tingling in hands and feet, cramping of legs, and other symptoms.

Although multiple sclerosis may go into remission and then recur, often with greater severity, over a period of four years Dorothy became progressively worse, until she met Herb Saunders, a farmer who had been treating people for various conditions by the use of specially prepared colostrum from a cow.

Dorothy took 4 tablespoons of colostrum a day for two years, and gradually improved, until all of her symptoms disappeared.

When some symptoms did reappear after a period of time without the colostrum, her husband obtained three more bottles of specially prepared colostrum, and again the symptoms disappeared. She has continued without symptoms for several years.

The Case of Judith Toliver

Dorothy’s experience was repeated by that of Judith Toliver,28 26 years-of-age, who was wheel-chair bound. Her blood was injected into the cistern of a cow, and the prepared colostrum given to her in the same manner as that described for Dorothy. After one year of treatment, she was able to walk upstairs with a cane.

Other Diseases

Early work using the described principle for Rheumatoid Arthritis involved staphylococcus and streptococcus killed organisms injected as antigens into the cow’s cistern, the successful results thus strongly supporting the infectious nature of Rheumatoid Arthritis. As many forms of Rheumatoid Diseases and related diseases seem to have an infectious and/or allergenic component, such as Ankylosing Spondilitis, candidiasis, Crohn’s disease, Fibrositis, Fibromyalgia, food allergies, rhinitis, and so on, this form of protection may be all-inclusive, inexpensive, and all-important.

According to one spokesperson,23 “The homeopathic remedy derived from this process has been found useful for various forms of arthritis.”

One hundred gallons of milk is taken from an inoculated cow, casein and fat separated by ultra-centrifuge, and pasteurized. It is then lypholized — frozen — that is the water is taken out under cold temperature. The resulting powder can then be used sub-lingually, or made into homeopathic remedies, or any other reasonable means for introducing it into the human or animal body.

The suppression of safe, workable treatments continues: The Minnesota diary farmer, Herb Saunders, 66, who cured Congressman Bedell, was prosecuted in St. James, Minnesota by the state prosecuting attorney for practicing medicine without a license. Herb was selling bovine colostrum (“first milk”) as a potential cure for cancer. “Saunders would sell each patient a cow for $2,500, but keep the cow on his farm. He would inject a sample of each patient’s blood into the cow’s udder [cistern], and then sell the colostrum to the cow’s owner for $35 a bottle. Saunders told an undercover state agent who posed as a cancer patient that he would ‘cough out’ his cancer within months if he would take colostrum, [and] refrain from chemotherapy.

“After two weeks of [court] trial — the longest this small community had ever seen — the result was a hung jury. The 6-person jury voted 5-1 to convict, but the last holdout, a part-time social studies teacher, apparently couldn’t decide whether Saunders was practicing medicine without a license or offering an alternative type of care that is not medical practice.”26

Berkley Bedell provided $21,000 for Saunders’ defense.

“The Watonwan County attorney’s office stated that it plans to retry Saunders.” Herb Saunders was indeed tried a second time, resulting in a hung jury more pronounced than the first time.26

To make these kinds of obviously safe treatments available to all, avoiding great costs and suffering under ineffective traditional treatments, each person is advised to write to his/her U.S. Senators and Representatives in support of freedom-of-choice-in-medicine legislation, and also to support similar bills at each state level.

Vaccines

There has been considerable interest in developing a vaccine against Borrelia burgdorferi, and so far the research looks quite promising, but there are years of work ahead before such vaccines are to be declared both safe and effective. Rather than inoculate humans with appropriate vaccines, possibly mice in nature can be vaccinated, thus breaking the Lyme Disease cycle9.

To develop any kind of effective vaccine against Lyme Disease, however applied, will surely provide knowledge on how to protect folks from the invasions of the syphilis spirochete.

According to reports in the Journal of Longevity Research, Dr. Henry Jay Heimlich, who developed the Heimlich maneuver, and who also pioneered successful organ replacement using part of a patient’s stomach to construct an esophagus, is investigating (in China) the use of a curable malaria organism as a cure for AIDS and possibly also Lyme disease. Malaria is said to stimulate production of TNC (Tumor Necrosis Factor), Interleukin-1, and other regulators of cellular immunity which has been associated with Lyme Disease14.

Royal Raymond Rife Technology

Superb technology was developed by Royal Raymond Rife under sponsorship of Timken ball-bearing funding. According to 1930’s reports by physicians associated with the University of Southern California, cancer and other diseases were being cured.

After the FDA persecuted and destroyed Rife’s work, his technology languished until James E. Bare, D.C. retraced Rife’s path, using modern technology. Dr. Bare and others have now produced results that seem to match, and in some respects exceed, Rife’s work. As they cannot build or sell these devices without incurring the ire of FDA, they have made circuit diagrams, video tapes and internet data available to those who would like to build the device themselves.

According to internet information, using this newly developed Rife instrument, frequencies 432, 484, 610, 790, and 864 will kill off the bacteria that causes Lyme disease.

Information can be obtained from James E. Bare, D.C. (505) 268-4272; fax (505) 268-4064; Email: rifetech@rt66.co m

References

1. See Anthony di Fabio, Friendly Bacteria — Lactobacillus acidophilus & bifido bacterium, The Arthritis Trust of America/The Rheumatoid Disease Foundation, 7111 Sweetgum Road, Suite A, Fairview, Tn 37062-9384, 1989.

2. Anthony di Fabio, Rheumatoid Diseases Cured at Last, The Arthritis Fund/The Rheumatoid Disease Foundation, Op.Cit., 1985.

3. Dr. Paul K. Pybs, The Herxheimer Effect, The Arthritis Fund/The Rheumatoid Disease Foundation, Op.Cit., 1992.

4. “Picking Out the Lymes From the Lemons,” Townsend Letter for Doctors, 911 Tyler St., Port Townsend, WA. 98368-6541, May 1993, p. 408; reprint from Science News.

5. See, William H. Philpott, M.D., Magnetic Resonance Bio-Oxidative Therapy for Rheumatoid and Other Degenerative Diseases, The Arthritis Fund/The Rheumatoid Disease Foundation, Op.Cit., 1994.

6. See Anthony di Fabio, Germanium, The Arthritis Fund/The Rheumatoid Disease Foundation, Op.Cit., 1989.

7. See Gus J. Prosch, Jr., M.D., Candidiasis: Scourge of Arthritics, The Arthritis Fund/The Rheumatoid Disease Foundation, Op.Cit., 1994.

8. See Morton Walker, D.P.M., “The Carnivora Cure for Cancer, AIDS & Other Pathologies — Part II, Townsend Letter for Doctors, May 1992, #106, p. 329.

9. See Fred S. Kantor, “Disarming Lyme Disease,” Scientific American, 415 Madison Avenue, New York, NY 10017-1111, September 1994, p. 34.

10. Pearl Atkin, R.N., M.A., CS, “My Experience With Lyme Disease,” Townsend Letter for Doctors, Op.Cit., November 1992, p. 997.

11. Louis J. Marx, M.D., Healing Dimensions of Herbal Medicine, 3418 Loma Vista Road, Suite 1-A, Ventura, CA 93003, date unknown.

12. Pearl Atkin, R.N., M.A., CS, “Treatment of Lyme Disease,” Townsend Letter for Doctors, Op.Cit., December 1993, p. 1220.

13. Congressman Berkely Bedell, “Bedell Testifies Before U.S., Senate,” Townsend Letter for Doctors, Op.Cit., December 1993, p. 1229.

14. “Malaria Therapy: A Cure for Cancer and Aids?” Journal of Longevity Research, Vol.1/No.2, December 1994, p. 8.

15. Anthony di Fabio, “Lyme Disease: Arthritis by Infection,” The Art of Getting Well, The Arthritis Trust of America/The Rheumatoid Disease Foundation, 7111 Sweetgum Road, Suite A, Fairview, Tn 37062-9384, 1994.

16. Textbook of Internal Medicine, J.B. Lippincott Company, East Washington Square, Philadelphia, PA 19105, 1989.

17. Burton Goldberg Group, Alternative Medicine: The Definitive Guide, Future Medicine Publishing Co., Inc., 10124 18th St., Court E, Puyallup, WA 98371.

18. Personal communication from Agatha M. Thrash, M.D., November 2, 1995.

19. Personal communication from Gus J. Prosch, Jr., M.D., November 20, 1995.

20. Jwing-Ming Yang, Arthritis — The Chinese Way of Healing and Prevention, YMAA Publication Center, Yang’s Martial Arts Association (YMAA), 38 Hyde Park Avenue, Jamaica Plain, Massachusetts 02130, 1991.

21. Personal letter from Berkley Bedell July 18, 1994.

22. Morton Walker, D.P.M., “The Carnivora Cure for Cancer, AIDS & Other Pathologies — Part I & II, Townsend Letter for Doctors, 911 Tyler St., Port Townsend, WA, 98368-6541, #95, p. 412; #106, p. 324.

23. Personal interview with, and correspondence from a scientist who chooses not to be identified.

24. Agatha Thrash, M.D., Calvin Thrash, M.D., Home Remedies, Thrash Publications, Rt. 1, Box 273, Seale, Alabama 36875.

25. United States Patent 3376198.

26. “Minnesota Milk-Cure Case Ends with Mistrial,” Townsend Letter for Doctors, 911 Tyler St., Port Townsend, Washington, 98368-6541, August/September 1995, p. 81; from Minneapolis Star Tribune, 3/16/95.

27. Malcolm Ritter, “Whey Could Prevent HIV Infection,” Wisconsin State Journal, January 31, 1996, quoting the February Nature Medicine.

28. Personal interview with Dorothy Johnson.

29. Personal communication from Robin Ellen Leder, M.D.

30. Personal interview with Dr. Catherine Russell.

31. Stephen Tobin, D.V.M., “Lyme Disease,” Townsend Letter for Doctors, 911 Tyler St., Port Townsend, WA, 98368-6541, January 1993, p. 63.

32. T. Ebina, et. al., Med Microbiol Immunol, Springer-Verlag, 173:87-93, 1984.

Supplement to The Art of Getting Well
http://www.garynull.com/articles/whichArticle.php?article=209
 
responsible editor/writer Anthony di Fabio
 
contributed by:
The Arthritis Trust of America,
7111 Sweetgum Road, Suite A
Fairview, TN 37062-9384
www.arthritistrust.org
Sources are given in references.
Authors of contributions\quotations are alphabetically arranged; major author, if any, is underlined.
Dr. Clifford Aldridge, Pearl Bennette Atkin, RN, MA, CS, Congressman Berkley Bedell, Dr. Willy Burgdorfer, Dr. Dorothea M. Linley, M.D., Stephen E. Malawista

Copyright ©1994
All rights reserved by The Roger Wyburn-Mason and Jack M. Blount Foundation for the Eradication of Rheumatoid Disease AKA The Arthritis Trust of America

Discovery of Lyme Disease