Equipping People To Make Sense Of What They Are Told
Evidence for Change -There is evidence of a widespread lack of awareness of Lyme
disease. UK GPs don’t recognise the rash and think Lyme doesn’t occur in their area;
Consultants don’t recognise the symptoms and the Lyme Reference Unit (at Southampton)
relies on the tests but doesn’t seem to apply them correctly and never sees the patient.
Although awareness amongst people is increasing, this is no good unless health professionals
are also aware because if you open the floodgates then primary and secondary care
will become swamped and will be seen to be failing.
What are the consequences of this lack of knowledge? Patient distress, cost to the
State and people buying antibiotics on the internet. All this damages the reputation
of the NHS.
Stella quoted a recent discussion with a vet who knows how difficult Lyme disease
can be. Because vets know it works, they are treating donkeys at the local donkey
sanctuary with long term high dose antibiotics. Donkeys!
Mrs Stella Huyshe-Shires worked in IT for the NHS for many years until she had to
take early retirement on the grounds of ill health because of her Lyme disease. She
is now an active participant in Lyme Disease Action, aiming for an improvement in
the diagnosis and treatment of Lyme disease in the UK.
Spirochetes may "love the brain to death"
"Chronic infection of the brain is a prominent feature of spirochetal infections.
These include syphilis, caused by Treponema pallidum; Relapsing Fever, caused by
different Borrelia species worldwide; and Lyme disease, caused by Borrelia burgdorferi
in Europe and North America. The word "spirochete" comes from the characteristic
spiral morphology of these bacteria under the microscope. Lyme disease and relapsing
fever are transmitted to humans by ticks in endemic areas, while syphilis is sexually
transmitted.
As early as 1822, dementia was recognised as a prominent complication of syphilis.
Soon it became apparent that multiple other neurological complications could occur.
Examination of the brain revealed the presence of spirochetes, in cases of dementia
20 to 30 years after the initial infection.
As with Treponema pallidum in syphilis, chronic brain infection is also prominent
with the relapsing fever spirochetes. During relapsing fever, people have recurrent
periods of fever separated by periods of well being. The fever is caused by the presence
of large numbers of spirochetes in the blood. Studies in relapsing fever showed that,
like in syphilis, the brain could remain infected with spirochetes for years after
the infection disappears from the blood.
In the earlier 1980's, Lyme disease was identified as a previously unrecognised spirochetal
infection with prominent neurological manifestations. These include headache and
stiff neck from meningitis, back pain and weakness from radiculitis, paralysis of
the face, and problems with attention and concentration. Lyme disease is today the
most common vector-borne disease in North America and Europe, with an estimated 5-40%
of cases developing neurological complications.
Although spirochetal infections are readily treatable with antibiotics, severe and
permanent neurological damage can occur if they go undiagnosed or if the treatment
is inadequate or delayed. Studies with Treponema pallidum and Lyme disease spirochetes
are limited because of the paucity of animal models featuring neurological infection.
In contrast, several animal models of relapsing fever show prominent neurological
infection. The majority of research has been done in laboratory mice infected with
a strain of relapsing fever spirochetes from South Western United States. The data
indicates that not all spirochetes are equally capable of entering into the brain.
The antibody response to the infection is critical for elimination of infection from
the brain.
The localization of spirochetes in the brain is mainly in the membranes covering
it, known as the leptomeninges. Spirochetes are also found in the brain tissue itself,
although in much lower numbers. Infection of the inner ear results in prominent vertigo.
Different serotypes vary in their ability to infect the brain. The main route of
entry into the brain appears to be the blood-brain barrier. However, alternative
routes of entry may be used.
Spirochetal entry into the brain results in infiltration of the brain tissue by large
numbers of inflammatory cells, known as microglia, and increased statement of inflammatory
molecules, like Interleukin 6. We are currently investigating whether chronic inflammation
could result in damage to brain cells and in neurological disease.
Using monkeys infected with Lyme disease spirochetes, we confirmed that the localization
of spirochetes in the brain is leptomeningeal. In this monkey model of Lyme disease,
the number of spirochetes in the brain is very low compared with peripheral tissues
like the heart or skeletal muscle, even in immunosuppressed animals. About 10% of
infected monkeys examined 4-24 months after infection show evidence of inflammation
in the brain, which is mild ..."
Lyme Disease Epidemic Causing Healthcare Crisis - USA
Under Our Skin Documentary Reveals Impact of Lyme Disease on people and Physicians
An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne
illness, is pitting health professionals against health professionals, prompting
health insurance companies to deny medical claims at an alarming rate, and leaving
suffering people stuck in the middle.
Transmitted through the bite of a tick, the number of Lyme disease cases in the United
States has doubled since 1991--with at least 27,000 new cases reported each year.
But because of inaccurate tests and under-reporting the actual numbers may be up
to 12 times higher, according to the CDC, making Lyme disease an epidemic larger
than AIDS, West Nile Virus and Avian Flu combined.
Tens of thousands of those suffer from what they say are the debilitating effects
of chronic Lyme disease, which can lead to lifelong disabilities or even death. Yet
many health professionals deny that such a disease even exists, and health professionals
willing to treat it using long-term antibiotic therapy have faced losing their medical
licenses.
The award-winning documentary Under Our Skin takes an unflinching look at the controversy
surrounding Lyme disease and its impact on the national healthcare system, with billions
of dollars of insurance claims, health professionals' medical licenses and people'
lives hanging in the balance.
The implications are staggering. Irwin Vanderhoof, PhD professor at the New York
University Stern School of Business, in 1993 estimated that Lyme disease cost society
nearly $1 billion per year. That estimate has since skyrocketed to about $2 billion
per year, including diagnosis, treatment, and lost wages, according to Contingencies,
an actuarial trade publication for the insurance industry.
"Given the CDC's admitted underreporting bias, the ultimate cost to society may prove
to be even more alarming," said Dr. Joseph Jemsek, a Charlotte-area physician featured
in Under Our Skin. "The cost in lives unfulfilled by an illness that today's medical
profession refuses to acknowledge is incalculable."
In a landmark prosecution announced last year, Connecticut Attorney General Richard
Blumenthal brought charges against the Infectious Diseases Society of America (IDSA)
for abuse of Lyme disease treatment guidelines and conflicts of interest for guideline
committee members. In response, the IDSA agreed to restructure its committee and
revise its controversial Lyme Disease Guidelines.
Meanwhile, as shown in Under Our Skin, people continue to suffer through misdiagnosis
while seeking treatment for a disease they're often told is just in their heads.
