YES LYME DISEASE EXISTS IN AUSTRALIA

Dr Peter James Mayne

1.

LYME DISEASE (Chronic)

Dr Mayne has always had an intense interest in the early initial infection that goes on to cause Chronic Lyme Disease, starting in 1992. This interest was sharpened by the dermatology diploma he did in 2005 in terms of early recognition of the disease and also the unique skin manifestation that can occur much later in the disease.

In October 2009 he was approached by a patient who was quite desperate with an advanced presentation after 102 tick bites in one day some years before. Her treatment (specialist directed) was failing after some initial success. Could he help? Could he take on the task of up skilling himself in this sad neglected area of medicine in Australia, where most doctors don't believe the disease exists?

The many pages to follow explore these questions with remarkable findings for both patients and doctors. For the latter this will be mainly for the medical gatekeeper, the patients GP. It is not intended that a patient will necessarily be able to understand the information presented within for doctors.

LYME DISEASE - FOR PATIENTS
LYME DISEASE - FOR DOCTORS
WANTED DOCTORS WHO HAVE HAD ERYTHEMA MIGRANS OR LYME DISEASE Either contracted in Australia or overseas - please email me at LMC@medemail.com.au

2.

LYME DISEASE INFORMATION FOR DOCTORS IN AUSTRALIA

Lyme disease in Australia can now be proven by nested PCR to both

Borrelia burgdorferi (Bb)
and Borrelia Garinii (Bg)

2 Proofs on this link, one by blood the other by tissue

ILADS The International Lyme and Associated Disease Society

Here is the main link to the society
http://www.ilads.org/

and this link is their treatment guidelines page
http://www.ilads.org/files/ILADS_Guidelines.pdf

A key Board member of ILADS is Joseph Burruscano MD a physician. He is the author of

"Advanced topics in Lyme disease"

The 2005 edition is available free on the net at ILADS
http://www.ilads.org/files/burrascano_0905.pdf

The 2008 edition you will have to pay for. I will be using information from the 2008 edition only, so sometimes it may not be in the 2005 edition.

I am going to attempt to give a brief overview on Lyme information. The topic is vast with many tangents and it takes very many hours to integrate this information into a sensible synthesis. I will heavily rely on the above information. Medical Practitioners have enough to do without taking on this subspecialty with its extreme time consumption, unless particularly motivated to learn more. The aim is to arm you with enough information to suspect this diagnosis.

Please follow these links
The precursor erythema migrans. Diagnosis and management from a
dermatological viewpoint.

The disease and its Co-infections. What we are seeing in Australia.
Patient History
Making the diagnosis - a clinical one
Confirmatory Lab tests
Treatment principles and options
Monitoring for successful treatment
Is there an endpoint?"

3.

ERYTHEMA MIGRANS - Its Diagnosis and Treatment

From a dermatological viewpoint this illness is very poorly identified by Australian General Practice. I have to admit I was one of those before 1992.

Forget the classic bulls eye - if you see one of those good luck to you. Borrelia infection following a tick bite is slow to develop, usually taking some 48 hours to produce erythema. Bear in mind your patient probably hasn't noticed it in this time if in less obvious places.

Unfortunately a large majority of bite reactions are described as ALLERGY in Australia. This is rather woeful. An urticarial rash of any description must be gone completely in 24 hours. Even if another forms. That is the fundamental definition of acute urticaria. Now your patient might have a local toxic reaction as in most insect bites, or even a small round induration suggesting trivial infection.

BUT if the lesion around the bite is more than 2cm and persistent more than 2 days then in our country it is either

BORRELIA INFECTION or

QUEENSLAND TICK TYPHUS

And definitely not ALLERGY.

Please review this brief CASE HISTORY presented at Cardiff University in 2004 regarding the distinction.

Induration is also a marked feature and if you remember the early phase of a BCG reaction then it is hard like that.

Removal of a tick within 24 hours is believed to prevent infection with Borrelia, but best within 12 hours.

Safest course of action is to prescribe the correct antibiotic immediately at presentation no matter how long after a tick bite. The case history reviews the use of tissue PCR but also recently I have found sampling the bite site after removal of the tick can return a positive PCR to Borellia
Treatment protocol (ILADS 2008)

Adults the standard is 200mg doxycycline for 28 days, alternatively amoxil 1gm tds for 28 days
Children Amoxycillin at standard dose for age 28 days
In pregnancy use erythromycin 500mg qid for 28days"


4.

DISEASE PRESENTATION

What I see in practice

Two strains of Borrelia are positively identified in the practice case load, Burgdorferi and Garinii. As to whether there is any difference in symptomatology I can not comment. The former is the predominant organism.

There is no arthritic disease as in North America. Rather we follow a disease pattern of marked neurological symptomatology which is the European and Asian pattern of the disease. There is also a biotoxin (refer Burruscano document) produced by the Borrelia which produces sometimes marked asymmetric muscle spasm and twitching. Cranial nerve involvement followed by upper cervical nerves accounts for most symptomatology.

In the same way as AIDS reduces the C3-8 cells there is a specific marker for Lyme disease CD57 (Burruscano again). Only Lyme disease suppresses this marker and like AIDS there is a marked propensity to harbour other important chronic infections in this state.

In practice I am finding Mycoplasma and Chlamydia Pn in a majority of patients. In the US there is quite a long list but I will just present these two here. It is most essential to look for these in every suspect case of Lyme disease. Even the standard IgG and M markers can be negative but the PCR's will be positive.

These infections are called Co-infections and most are believed to be transmitted with the tick bite."

5.

PATIENT HISTORY

A striking feature of Lyme disease is that a lot of patients either don't recall ever having a tick bite or report yes they have had a tick bite in the distant past and removed it themself or had it removed. These patients are not able to describe ever having the large local reaction after a bite that we know as erythema migrans.

The number of of doctors seen and the number or diagnosis made will be proprtional to the time interval of chronic symptoms. I had one at 7 years and another at 10 years. The last had a very impressive list of medical attendances but no mention of possible Lyme disease. She found her diagnosis herself on the Net. Past diagnosis will often revolve around CFS and fibromaylgia. This of course is not to suggest that Lyme is the fundamental underlying cause of these conditions.

Cardinal symptoms of Lyme Disease
Lethargy
Swollen glands – particularly neck
Sore throat
Thoracic wall pain
Dyspnoea
Cough
Myalgia
Muscle spasms- tetany type or twitching
Muscle cramps
Occulomotor abnormalities particularly with retro orbital pain. Also lateral object fixation at speed painful or impossible. Also can induce nausea like nystagmus reaction.
Hyperacusis
Headache
Creaking neck +/- stiffness

Common
Pyrexias – more at night
Abdominal pain
Palpitations
Paraesthesia
Facial paralysis (Bell’s Palsy)
Visual deficit

Less Common
Tinnitus
Vertigo
Imbalance
Gait disturbance
Arthralgia

More general symptoms

Presyncope, tremors, confusion, disorientation, disorientation, memory loss, mood changes, depression, insomnia, irritability"

LINKS TO OTHER PAGES
Making diagnosis
Confirmatory lab tests
Treatment options
Monitoring
Endpoint
Proofs


Dr Peter James Mayne

MBBS Sydney University 1973
DPD (Dermatology) Cardiff University 2005
IDD International Dermoscopy Diploma Graz University 2008 - Distinction
FACRRM Fellow Australian College Rural and Remote Medicine
Certificate Course Diabetes Management Monash University 2000
Honorary Tutor Dept Medicine Cardiff University (Dermatology and Dermoscopy)

Our Contact Information
Telephone 61 2 65599277
FAX 61 2 65597344

Postal address
89 Bold St Laurieton 2443 NSW Australia
Electronic mail
General Information and
Reception e-mail:
frontdesk.LMC@medemail.com.au
Dr Mayne LMC@medemail.com.au

Lyme pages are under development over many months from March 2010
Last update 10th July 2010"

First quote from website http://www.drmayne.com/Lyme.htm

Second quote from website http://www.drmayne.com/Fordoctors.htm

Third quote from website http://www.drmayne.com/em.htm

Fourth quote from website http://www.drmayne.com/disease_presentation.htm

Fifth quote from website http://www.drmayne.com/patient_history.htm

THE NUTS AND BOLTS OF LYME DISEASE - BUSSASCANO

LYME DISEASE THE NUTS & BOLTS
BY JOSEPH T. BURRASCANO, JR, MD
presented July 2010 in DePere, WISCONSIN

WHAT IS LYME DISEASE?
Lyme disease is the illness that results from the bite of an infected deer tick

STATISTICS
• Fastest growing vector-borne infectious disease in the USA
• CDC estimates are over 200,000 new cases per year!
• In the USA, rate of new cases exceeds that of HIV/AIDS
• Anyone can get it- affects all ages, both genders, and even our pets

LYME IS NEARLY EVERYWHERE!
• Lyme has been reported in all 50 states
• Present worldwide- every continent except Antarctica
• In many areas, lawns have higher tick concentrations than the surrounding woods
• Ticks can survive down to 17 degrees below zero! (may still get tick bites in wintertime)
• Most people are bitten during usual daily activities
• Tick bite is painless
• Tick is so tiny, it can be missed

BASIC FACTS
• Only 16% recall a tick bite
• “Classic” rash (Erythema Migrans) occurs in only 1/3 to ½ of cases
• Subtle onset of nonspecific “viral-like” symptoms often obscure the diagnosis
• Blood test may miss up to ½ of cases!!!
• Spinal fluid serology positive in only 9%!!! (91% false negative rate!!!!)

MORE NEW STRAINS OF BORRELIA IDENTIFIED
• A new strain of Lyme Borrelia called SCW-30h has been found in the USA, in all areas.
• Another new one, B. americana has been found in the South from Texas to the Atlantic
• These are being investigated to find out if they can make you ill, and if so, how best to treat it.
• ?atypical Lyme; seronegative Lyme

INCREDIBLY COMPLEX!
• Ticks may carry DOZENS of potential pathogens- NATURE’S DIRTY NEEDLE!
• One tick bite can result in simultaneous co-infections by different germs
– Spirochetes (Lyme)
– Parasites (Babesia)
– Bacteria (Ehrlichia, Anaplasma)
– Mycoplasmas (Gulf-War and Chronic Fatigue germs)
– Viruses (T.B.E., West Nile Virus)
– Worms (nematodes)?

XMRV- A New Retrovirus- Is This Another Co-Infection?
• Xenotropic murine leukemia virus-related virus (XMRV) was first isolated from prostate cancer patients
• Dr. Judy Mikovits looked for XMRV in CFIDS patients. She found it in only 3.7% of healthy controls but 95% of CFIDS cases were antibody positive and 68% were PCR-positive. Overall, 98% tested positive!
• Recently, the FDA has independently confirmed this study
• She and collaborating clinicians also found XMRV in Lyme, fibromyalgia, atypical MS and autism
• This is a retrovirus (as is HIV) and theoretically can cause or add to many symptoms and immune defects as seen in these illnesses, as well as in Lyme
• Three avenues of treatment are being studied:
– Anti-retroviral agents, as used in HIV
– Artesunate
– Antiviral herbs

LYME- WHY THE CONCERN?
ILLNESS CAN VARY FROM MILD TO VERY SEVERE
– Early Lyme, if promptly recognized and appropriately treated, can be cured
– Untreated Lyme may progress, causing a very severe illness and disability
– Can be latent for months to years, and later result in catastrophic, permanent damage
– Deaths have been reported
• Most symptoms are non-specific
• Mild symptoms often are dismissed
• Many medical errors due to lack of diagnosis
• More medical errors from incorrect diagnoses and unnecessary or dangerous treatments
– Fibromyalgia, ME/CFS, depression, multiple sclerosis, ALS (Lou Gherig’s Disease), malingering, Munchausen
• Often, patients see literally dozens of doctors and undergo an encyclopedia of tests, Lyme is missed, and they still have no diagnosis
• When medical doctors cannot find a cause for the complaints, they refer patients to a psychiatrist (blame the patient for his/her illness!)
• Can be transmitted from mother to child

TYPES OF LYME DISEASE
• “Classic” Lyme (my definition) includes:
– Early localized
– Early disseminated
– Late disseminated
• Chronic Lyme Disease
– Illness present for one year or longer
– Is a totally different disease!
– May not be curable!

DIAGNOSING LYME A difficult task!
SYMPTOMS
• Headaches, photophobia, stiff neck
• Fatigue, intolerance of exercise
• Aches in and around joints
• Numbness, tingles, sense of vibration
• Poor coordination, imbalance, light-headed, need to sit or lie down, especially in afternoon
• Forgetful, confused, speech errors, ADD-like
• Sleep disturbance
• Neuropsychiatric- anxiety, panic attacks, depression, rage attacks, antisocial behavior
• Intolerance of stress, alcohol, sleep deprivation (any of these will make all symptoms worse)

BLOOD TESTING
• LYME (Borrelia burgdorferi)
– Serologic tests (ELISA, Western Blot)
– Sensitivity is poor: Commercial labs: 50% Private reference labs (Igenex): 70%
– PCR- also poorly sensitive- <30% • Even a spinal tap serology will miss over 90% of cases! • CO-INFECTIONS – Situation is worse- pick up 30% at best!!!! • Conclusion: LYME IS A CLINICAL DIAGNOSIS ERYTHEMA MIGRANS- TYPICAL “BULLSEYE” RASH • Expands over time, Painless, Raised, May be warm RINGWORM – Scaly center – Not raised or warm SPIDER BITE – Painful! – Necrotic center MAKING A CLINICAL DIAGNOSIS: THE POINT SYSTEM • Tick exposure in an endemic region 1 • History consistent with Lyme 2 • Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded): • Single system, e.g., monoarthritis 1 • Two or more systems 2 • Erythema migrans, physician confirmed 7 • ACA, biopsy confirmed 7 • Seropositivity 3 • Seroconversion on paired sera 4 • Tissue microscopy, silver stain 3 • Tissue microscopy, monoclonal IFA 4 • Culture positivity 4 • B. burgdorferi antigen recovery 4 • B. burgdorferi DNA/RNA recovery 4 INTERPRETATION DIAGNOSIS • Lyme Borreliosis Highly Likely: 7 or above • Lyme Borreliosis Possible: 5-6 • Lyme Borreliosis Unlikely: 4 or below CD-57 COUNT (Natural Killer Cells) • Low counts seen in Chronic Lyme when the infection has been active > 1 year
• Reflects degree of infection
• CAN BE A SCREENING TEST!
• Predicts a relapse if low when antibiotics end
• Must use method of LabCorp (normal is >180)
– <20- severe illness – 20-60- most common result in chronic patients – >60- Lyme activity minimal
– >120- Relapse NOT likely after treatment ends

EARLY LYME
• Rapid diagnosis is critical- fully curable at this stage if treated properly
– Start treatment as soon as possible
– If a rash is present, start treatment immediately!
• Do not wait for blood tests- Tests may take weeks to become positive or may NEVER get a positive test!
– If no rash, but high suspicion, treat, observe clinically, and retest serially

TREATMENT OF EARLY LYME
Oral antibiotic for 4 to 6 weeks
• Shorter courses associated with a linear rate of treatment failures
• Be sure to use full doses!
– Lyme has already spread to other areas
– Already in the central nervous system
– Inadequate treatment may worsen later illness (“survival of the fittest”)
• APPROPRIATE TREATMENT OF EARLY LYME MAY PREVENT CHRONIC LYME
DISSEMINATED LYME
• By definition, present for more than six weeks, but less than one year
• Initial non-specific symptoms gradually change to involve multiple discrete organ systems:
– Joints (pain, stiffness, subtle swelling)
– Peripheral nerves (numbness, tingles, weakness, vibration)
– Central nervous system (“brain fog”, impaired short-term memory, confusion, mood disorders)
– Original, general symptoms may persist (headache, fatigue, sweats, etc.)
• Specific patterns develop:
– Monthly cycle of waxing and waning illness
– Symptoms affecting major organ systems “migrate”- move around

TREATMENT OF DISSEMINATED LYME
• Start with orals if possible
• If very ill, pregnant, or cannot tolerate oral antibiotics, then may need IV therapy for 6 to 12 weeks, followed by oral therapy if the infection is still active
• May need combination therapy (co-administration of two or more dissimilar antibiotics)
• Duration of treatment often mirrors duration of illness- treat for 6 weeks to 6+ months
• Must be free of signs of active infection before treatment ends

CHRONIC LYME DISEASE
DEFINITION- ILL WITH LYME FOR ONE OR MORE YEARS

• Is the start of clinically significant immune breakdown
– Decreased function and numbers of all three arms of immunity: B, T and NK cells
– Elevated cytokine levels cause many of the symptoms, and further impair the immune response
– Because most Lyme tests are serologies, which measure immune response to B.burgdorferi, a weakened immune system may result in more false negative tests
• PARADOX: The sicker patient is more likely to have a negative (non-reactive) Lyme serology!

CLINICAL FEATURES Very complex disease:
• Difficult to diagnose
• Broad spectrum of illness, from subclinical to severely debilitating, and rarely, can be fatal
• Extremely difficult to treat the infections
• Extremely difficult to manage totality of complaints
• May not be curable in some- why is a chronic illness

CHRONIC LYME
• Primary symptoms of Chronic Lyme are NEUROLOGICAL (nearly every patient)
– Encephalopathy and encephalitis, Peripheral and autonomic neuropathy, Demyelination- central and peripheral
• Inflammatory arthritis in only 5%
• Myositis (muscle inflammation) rare, and Carditis (heart inflammation) also rare
• Immune suppression allows co-infections to flourish, and opportunistic infections (yeast, etc) become more of a problem

CHRONIC LYME IS MORE THAN AN INFECTION
• Immune “Dysregulation”: Immune activation & Immune suppression
• Neurotoxins, Hormonal disturbances, Damage to organs, tissues, cells and DNA
• Nutritional disturbances, Metabolic effects

TREATMENT OF CHRONIC LYME
• Antibiotics, usually in combinations
– Antibiotic synergism, cover all infected tissues, cover alternate forms of Bb, and co-infections
• Nearly every chronic Lyme patient is a candidate for IV antibiotics
• Supportive treatments
– Vitamins, probiotics, exercise, low carb diet, no alcohol, enforced rest
• If neurologic symptoms do not clear, there is the option to treat with IVIG

INDICATIONS FOR INTRAVENOUS THERAPY
• Abnormal spinal fluid (↑WBC, ↑Protein)
• Synovitis with high ESR
• Illness for more than one year
• Age over 60
• Acute disseminated illness in first trimester
• Acute carditis
• Documented immune deficiency
• Prior use of steroids or other immunosuppressants
• Failure or intolerance of oral therapy

DURATION OF ANTIBIOTIC THERAPY- CONTROVERSIAL!
• Restrictive guidelines by Infectious Disease Society of America (IDSA)
– Maximum is one month; rarely will repeat
– No allowance for physician’s clinical judgment or degree of illness of the patient
– No consideration of co-infections
– Under investigation by the Connecticut Attorney General!
• More realistic guidelines by International Lyme and Associated Diseases Society (ILADS)
– Treatment is individualized, based on patient need and response, and may have to be given for months to years

CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse

CO-INFECTIONS IN LYME
Nearly universal in chronic Lyme
• Symptoms more vague, and overlap
• Diagnostic tests LESS reliable
• Co-infected patients are more ill and more difficult to treat
• Lyme treatments do not treat Babesia, Bartonella or viruses
• One reason for “treatment-resistant” Lyme
• Bartonella, Babesia, Anaplasma, Ehrlichia, Mycoplasma, Viruses, Nematodes?
• ?Others

BARTONELLA-LIKE ORGANISMS (“BLO”)

• More prevalent in NJ ticks than even Borrelia!
• Clinically, seems to be a different species than “cat scratch disease” (?Tularemia)
• Persistent CNS symptoms despite Lyme Rx
• CNS symptoms out of proportion to physical
– Irritability, anxiety, insomnia, seizures, rage attacks, encephalopathy-encephalitis, psychiatric syndromes,
– Also gastritis, rashes, tender skin nodules, sore soles, AM fevers, light night sweats
• CSD serologies and PCR tests are insensitive!
– Miss up to 80% of clinically defined cases
• Bartonella FISH soon to be available

BARTONELLA-LIKE ORGANISMS- TREATMENT-
• Levofloxacin (Levaquin) is drug of choice- 500 mg daily, and consider adding a proton pump inhibitor
• Cell wall drugs suppress but do not kill BLO, but may synergize with fluoroquinolone
• Rifampin and metronidazole may be alternatives
• Erythromycins alone totally ineffective, and may inhibit concurrent fluoroquinolone. However, may work if given with rifampin
• Response to doxycycline alone variable but usually poor- may be combined with rifampin
• Combination of rifampin + Bactrim has had some success
• Treat for 1 to 3+ months if tolerated

PIROPLASMS (Babesia species)
• Many different species found in ticks (13+). Can test for only B.microti and B.duncani
• B. duncani more difficult to treat than B. microti
• Diagnostic tests insensitive
• Chronic persistent infection documented
• Infection is immunosuppressive
• Renders Lyme more severe and more difficult to treat, with worse symptoms and more organ damage

BABESIOSIS- ACUTE AND CHRONIC INFECTIONS
• Acute-
– Abrupt onset of symptoms; no rash
– Spectrum of mild to severe presentations
– Can be fatal!
• Chronic-
– Symptoms blend with those of Lyme and diagnosis often missed

BABESIA TESTING
• Standard smears useful only for acute infections !
– Smears universally negative after two weeks
• Enhanced smears-
– Buffy coat
– Prolonged scanning, with digital photography
• Fluorescent in-situ hybridization assay
– Fluorescent-linked RNA probe
– Increases sensitivity 100-fold over conventional Giemsa-stained smears
• PCR and serology
• All methods are of low yield, but may not overlap! Therefore, recommend use all available tests

DIAGNOSING ACUTE BABESIOSIS
• Acute onset of symptoms
– Sweats, high fever, chills, headache, dark urine, acute hemolytic anemia, severe illness
• Blood smear usually reliable
• Serologic tests may convert within one week, but not always reliable
• Rule out other acute infections

DIAGNOSING CHRONIC BABESIOSIS
• Acute onset of initial illness
• Incomplete response to Lyme treatments
• **Symptoms more severe than expected with Lyme alone**
• Also:
– Marked night sweats which may cycle every several days
– Air hunger, cough
– Severe persistent headaches
– Unrelenting fatigue
– Off balance- “tippy”, not vertigo
• ANY positive test in proper clinical setting

TREATING BABESIOSIS
• Is a parasite, so is treated differently than Lyme, but can be treated concurrently while on Lyme medications
• Mepron (atovaquone) 5+ cc bid, plus azithromycin 600 mg daily for 4 to 6 months minimum, but higher doses may be needed, especially with B. duncani
• Oral clindamycin + quinine rarely used as first line
• Malarone (atovaquone + proguanil), 6+ tabs daily
• Added sulfur (Bactrim DS), 2 to 4 daily
• Added metronidazole (Flagyl), 750 to 1500 mg/d
• Always add artemesia or artemesenin but must be given in cycles- 2-3 weeks on, and 1-2 weeks off
• No Co-Q 10
• In extremely difficult cases, IV clindamycin may be helpful

EHRLICHIOSIS AND ANAPLASMOSIS
• Less common than the other tick-borne infections
• Acute and chronic forms
• Acute- rarely, causes a spotted rash
– Abrupt onset, high fever, muscle pain, headache, low WBC count, elevated liver enzymes
• Chronic-
– Headaches and muscle soreness
– Persistent leucopenia
– Test with serology, PCR or smear
• Treat with doxycycline for 2 to 4 weeks
• Fluoroquinolones and rifampin MAY be (poor) alternatives

MYCOPLASMA
• “Chronic fatigue” germ
• Not clear its origin or source
• More often seen in the immunosuppressed
• Test with serial PCRs (still insensitive)
• Treat with doxycycline and/or a fluoroquinolone, and add hydroxychloroquine (Plaquenil)
• Erythromycins & rifampin, with added hydroxychloroquine OK but less effective
• Treat for three years?
• Restoring better immune function is probably the best approach

OTHER CO-INFECTIONS
Especially in the chronic Lyme and immunosuppressed patients
• Viruses: TBE, West Nile, HHV-6, CMV, other herpes, bornavirus
• Chlamydia, Yeasts, Q-fever?, XMRV?, Others?

SORTING IT ALL OUT !
• LYME-
– Multisystem, 4-week cycles, afternoon fevers, no sweats, gradual onset of illness

• BARTONELLA-
– CNS out of proportion to skeletal
– CNS irritability, GI, Sore soles, sub Q nodules, AM fevers, light sweats, gradual onset of illness

• BABESIA-
– Sweats, fatigue, global headaches, air hunger, cough, hypercoaguable, cycles every few days, rapid onset, very severe Lyme symptoms

• EHRLICHIA-
– Headaches (knife-like), muscles, low WBC, elevated liver function tests, rapid onset

• MYCOPLASMA-
– Fatigue, poor exercise tolerance, slow or minimal response to antibiotics, lots of neuropathy

TREATMENT
More Than Antibiotics!
• Enforced rest, No caffeine, No alcohol, No smoking at all, Low carb, high quality protein diet
• Daily vitamins and other nutritional support, Maintain hydration, Exercise program, Never any steroids!

CLINICAL MEDICINE IN THE 21ST CENTURY: LYME DENIALISM
• If the test does not show it, it does not exist
• If organized medicine did not discover it, it does not exist
• New illnesses become real only after years or decades of clinical trials
• But– will not perform clinical trials on something that does not exist!

WHAT MUST BE DONE
• EDUCATION: Become your own advocate
• AWARENESS: Keep up with not only the latest medical news, but also the political developments
• ADVOCACY: “We will not go away”; Support those who support you
• NEVER GIVE UP

RESOURCES
www.ILADS.org
www.lymediseaseassociation.org
www.mentalhealthandillness.com

Victorian Mum cries out about child risk of Lyme Diagnosis in Australia

MUM SAYS DELAY IN DIAGNOSING INSECT BITE ILLNESS PUTS CHILDREN AT RISK
Written by Marianne Betts (20 July 2011)

Ailing mum Sherryn Jackson with daughters Caprice, Anneka and Janaya.

A MUM is angry it has taken years for her to be diagnosed with a rare and life-threatening disease, which she may have passed on to her children.

Had Sherryn Jackson been immediately diagnosed with Lyme disease after suffering a tick bite, she says she would not have risked transmitting it to her daughters during pregnancy.

Her NSW GP, Dr Peter Mayne, said he'd diagnosed 20 Victorians with the infection in the past year, but it remained largely unrecognised by Australian health authorities.

Victorian health department spokesman Bram Alexander said the tick responsible for transmitting Lyme disease was not believed to exist in Australia.

"However, if doctors are diagnosing this condition in Victorians we would be very interested in investigating this further," he said.

Dr Mayne said Lyme disease was a bacterial infection that appeared long after a tick bite, and could be cured with antibiotics.

Ms Jackson said she was bitten in Shepparton seven years ago when carrying her first child. The bite vanished after a couple of months, but five years later she began to feel unwell.

"Weird things started happening ... I started getting dizzy spells, I developed balance, co-ordination and speech problems, and headaches," Ms Jackson said.

Many doctors had examined her, blaming an allergy, imaginary symptoms, and possibly multiple sclerosis.

Dr Mayne diagnosed her with Lyme disease last week, and she was awaiting US tests for further details.

She believes at least one of her three daughters contracted the disease from her.

Janaya, 4, has been plagued by health problems, and was admitted to hospital last year with encephalitis, a brain inflammation common in children with Lyme disease. Her twin, Caprice, has had eye problems.

"I'm angry. It should have been picked up. I'd have had three months of antibiotics, and I wouldn't have become sick, and my children wouldn't be sick," Ms Jackson said."

Picture and quote from website: http://www.heraldsun.com.au/news/more-news/mum-says-delay-in-diagnosing-insect-bite-illness-puts-children-at-risk/story-fn7x8me2-1226097836338

Australian Investigation in Lyme Borreliosis and other Vector bourne llnesss

You have been sent this letter and its enclosures by Dr Peter Mayne of the Laurieton Medical Centre.

I would like to invite you, through Dr Mayne, to join a study I am conducting into several vector-borne diseases – Lyme Borreliosis, Bartonellosis and Rickettsiosis.

It is my understanding that you have been diagnosed with Lyme disease by Dr Mayne, and either have a pet dog yourself or have a close association with a dog or dogs (maybe you walk with a friend who has dogs). By way of background to this study, I am a veterinarian who studies vector-borne diseases of dogs, and I also teach clinical medicine to veterinary students at the Murdoch University Veterinary School. As I expect you know, Lyme disease is caused by Borrelia bacteria that are usually transmitted to humans via the bite of an infected tick. In regions of the world where Lyme disease is endemic and well recognised, such as in north-eastern USA, people’s dogs are also often infected by the same organism. This is because dogs, being ‘closer to the ground’ and having ready access to the undergrowth, are even more likely than their owners to be exposed to the vector ticks. Dogs are often regarded in these regions as “sentinels” of infection; in other words the dogs can act as an early warning of potential infection in humans in the area.

I am interested to know whether the dogs in your life have been exposed to Borrelia and/or other pathogens that can also cause illness in people, such as Bartonella bacteria or Rickettsia (another bacterium-like micro-organism).

In order for this research project to be fully informative I need your consent to obtain information about yourself and about your dog(s) and I also seek your permission to examine and take a blood sample from your dog(s). Both aspects of this study have been approved by the Research Ethics Committees (Human and Animal) at Murdoch University. It is entirely up to you as to how much information you permit me access to, and whether you allow me to take a blood sample from your dog(s). If you do not wish to participate, you need not do anything further.

If you wish to participate in the study I suggest that we proceed as follows:

1. You read all the information provided with this letter, sign the consent forms (one each for the Human Ethics and Animal Ethics Committees), and return them to me by mail (self-addressed envelope enclosed) together with the questionnaire, completed to the best of your ability.

2. After receipt of the signed consent form, I will contact you by telephone to arrange a time and location for us to meet and for me to examine your dog(s) and collect a blood sample from them. As you will see from this letter, I am based in Western Australia, so I will be arranging a week-long visit to NSW in March or April.

3. I am also seeking your consent to test samples from you, such as blood or tissues. In many cases these will have been taken previously by Dr Mayne or other doctors and are stored in a laboratory, so I just need your permission to access them. If no such samples are stored, I might need to ask if we can collect another blood sample from you. I should point out that this would be done by your health professionals, and not by me!

The initial results of the blood test on your dog(s) will be available immediately. I will be using a test kit known as the Idexx Snap 4Dx. This provides information on whether your dog has been exposed to three bacterial organisms (Borrelia, Ehrlichia and Anaplasma) and whether he/she has heartworm. So this is a free heartworm test as well!

I will be happy to discuss the significance of the test results with you of course, especially if any is positive, but I would also like to send a report to your own veterinarian as a matter of courtesy.

If you have a close interaction with certain dogs by association, such as those owned by family or friends, but do not actually own a dog, I would also like to examine those dogs and sample them if possible. This will require their owners to agree to me testing the dogs and they should therefore complete one of the enclosed Animal Ethics consent forms. You should still complete the questionnaire and return it to me together with the consent forms (one signed by you and one (for each dog) signed by the owner).

You can decide at any time to withdraw your consent to participate in this research. If you decide to withdraw, any material you have given us will be destroyed. Withdrawing from the research will have no consequences for your ongoing interaction with Dr Mayne.

I am happy to discuss with you any concerns you may have about this study. All my contact details are provided below.

In addition to the blood test results that I will be able to tell you immediately, you can expect to receive feedback from the overall study within a few months of our meeting.

Sincerely
Peter Irwin, BVetMed, PhD, FACVSc (Canine Medicine), MRCVS
Associate Professor in Small Animal Medicine
Registered Specialist (WA) in Canine Medicine
Direct office line: 08 9360 2590
Mobile: 0428 364868
Email: P.Irwin@murdoch.edu.au

This study has been approved by the Murdoch University Human Research Ethics Committee (Approval 2011/05) AND the Murdoch University Animal Ethics Committee (Approval R2385/10). If you have any reservation or complaint about the ethical conduct of this research, and wish to talk with an independent person, you may contact Murdoch University’s Research Ethics Office (Tel. 08 9360 6677 or e-mail ethics@murdoch.edu.au). Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome."

Quoted from an information letter PDF distributed by Peter Irwin to Lyme patients.
Image from website: http://www.lymeinfo.com/diagnosisandtreatment-riskfactors.aspx

Tick-borne Lyme disease is curable, but left untreated can become crippling. The government insists it doesn't exist here, yet a growing number of Australians are convinced they have it, and some experts are prepared to back them up. Fenella Souter investigates. If grief and loss crush some people into mute acceptance, Mualla Akinci McManus isn't one of them. Small and rather fierce, Akinci McManus is like a fast-talking, low-slung avenging angel, and what she lacks in height she makes up for in blunt determination. Since her husband, Karl McManus, died in July last year, she has been on a mission to prove that Lyme disease, or a Lyme-like disease, passed to humans by infected ticks, exists in Australia and led to her husband's death. Hundreds, perhaps thousands, of Australians suffering from a constellation of mysterious, painful and debilitating symptoms following tick bites agree with her and say they're being denied treatment because doctors tell them they can't have the disease. Early treatment with antibiotics can generally stop the illness in its tracks, while delay can allow it to progress, invading, in severe cases, every organ in the body. Health authorities insist there is no "conclusive evidence" that Lyme disease occurs in Australia: few people have tested positive in government-approved labs, and our ticks haven't been found to carry the Borrelia bacteria that cause Lyme (which is more correctly known as Lyme borreliosis). Still, the last government-funded research that looked for Borrelia in Australian ticks, and failed to find it, was undertaken 17 years ago. Nothing about Lyme disease is simple. As one US Lyme website argues, there isn't a disease in the past 100 years that has polarised the medical community more than this one - and that's in a country where its existence has been officially recognised for decades. For a start, Lyme can be a notoriously difficult disease to diagnose accurately. The bacteria, or its antibodies, often fail to show up in blood tests, depending on the stage of the disease; it can hide in other parts of the body; false negatives or false positives are common, especially in places where the disease is rare. In known Lyme areas, controversy rages about whether it's being over- or under-diagnosed. There are warring schools of thought about the best treatment. There's division over whether there's such a thing as "chronic Lyme disease": some say the illness from this slow-reproducing bacteria can continue for years, and require years of sophisticated antibiotic treatment; others argue there's no such thing as chronic Lyme and that taking antibiotics long-term is dangerous. The first reported case in Australia, based on clinical symptoms, was reported from the Hunter Valley in NSW in 1982, and there have been a number of anecdotal cases since, mostly from eastern coastal Australia, where ticks are rife. Is it here? The NSW Health Department acknowledges that occasionally tests here for Lyme have been positive, but claims those people were found to have picked up the infection overseas. Anyone who has merely visited an overseas country where Lyme exists - from Japan to the UK - will have trouble proving they caught Lyme here. Indeed, the McManus case is complicated by the fact that the couple went to Italy and Germany a few weeks after Karl was bitten here by a tick, although his widow says they were never anywhere forested or even vaguely green - McManus was a car nut and they spent their time on autobahns, in high-rise hotels and car mus-eums, she says. "It was all metal and concrete." On the other hand, one researcher said Lyme disease is so prevalent in Europe "you could catch it sitting in a Munich beer garden". Good Weekend spoke to several people who have never left Australia but believe they are suffering from Lyme, or a version of it, following bites. A Sydney couple, Jodie and Brett Donnelly (below), believe Brett contracted the disease (and perhaps a parasite infection as well) after coming into daily contact with birds carrying infected ticks and mites at his workplace. Severe rashes and weird skin conditions were followed by extreme fatigue, pain, an atrophying leg, difficulty walking and, recently, cognitive decline and pains in his heart and spine. When Good Weekend met with the couple, it was obvious he was having great difficulty with recall and gathering his thoughts. Jodie says she has suffered a less severe version of many of the symptoms as well. Brett was given diagnoses that included scabies, eczema, delusional parasitosis (a psychosis) and terminal cancer. The couple had to battle to have him tested for Borrelia. "And even then, it's been a nightmare trying to get the results," Jodie says. Brett has tested positive for Borrelia, but through a lab that lacks the accreditation the government recommends. Another recent preliminary test, at an accredited lab, appeared to return a positive result for two strains, but was not later confirmed. As one expert noted, "Borrelia testing can be hellishly complicated, and a negative test doesn't necessarily mean you haven't got the disease. It just means you can't confirm the diagnosis." The Donnellys insist they have since heard of dozens of cases of other people with similar symptoms - including fatigue, rashes, shooting head pains, extremely sore soles of the feet - after some sort of contact with birds. Are these people suffering Lyme, or something else again? And why are they meeting with such resistance? Deadly little bite It's impossible to tell how many australians are experiencing Lyme-like symptoms. The lab at Sydney's Westmead Hospital conducts about 30 tests a week, and Royal North Shore Hospital about 16 a month, but there's no way of knowing how many people go to doctors with symptoms but are never suspected of having borreliosis. Many people who believe they suffer from Lyme told Good Weekend their doctor never asked if they'd been bitten by a tick or been in Lyme-endemic areas. Mualla Akinci McManus is convinced that Lyme, or something like it, is what her husband Karl contracted after being bitten by a tick in 2007, while working on the set of Home and Away in bushland in Sydney's Terrey Hills. He didn't remove it until he came home, and used kerosene to do so, which is not recommended (see The Enemy, page 20). A week or so later McManus had flu-like symptoms. In ensuing months, he developed rashes, a stiff neck, sweats, facial discolouration, mood changes and neurological complications. Three years later, the once healthy 44-year-old had a paralysed tongue, paralysed arms, was wheelchair-bound and being fed through a tube in his stomach. Had he received the proper treatment early enough and for long enough, his widow believes, he'd be alive today. She refuses to accept the specialists' diagnosis of multifocal neuropathy or, possibly, motor neurone disease - "diagnosed after five minutes, with no history-taking, and ignoring so many of his symptoms", she says. (There are no diagnostic tests for these other illnesses, either.) Tests for Borrelia done by government-approved labs here came back negative, while tests the couple had done by labs in Germany and America showed positive, she says. "I know he didn't have motor neurone or multifocal neuropathy because he had three periods of improvement when he was getting the right treatment," she says, referring to his time in a German clinic. "You don't improve when you've got motor neurone. I took him out of hospital because they weren't helping him at all and I managed to get him to put on 15 kilos and build up muscle. That's unheard of with the diseases they said he had." In the end, it was apparently a respiratory infection that killed him. Akinci McManus was awarded a Supreme Court injunction last year to have her late husband's body tested for Lyme. She won't release the postmortem report done here but says it was "inconclusive". She's awaiting results from labs in the US and Austria on postmortem tissue. Meanwhile, she has set up the Lyme Disease Association of Australia and the Karl McManus Foundation to raise research funds. She's also planning to take a class action against the NSW Health Department, joined by more than 100 other Australians, she says, who believe they have Lyme and have not been treated for it. However, the action could take years to get going. First, they have to find a bacterium here that could be the culprit. Akinci McManus is not one to give up. There's only one point in our interview where this tough-talking, recently bereaved woman allows herself to break down. "Karl trusted me and I failed him," she says through tears. "I must not fail him in this ... Nothing in science is black and white, so why can't they just consider it?" Ticks and disease Dr bernie hudson, an infectious disease specialist at Royal North Shore Hospital, is one of several doctors who treated Karl McManus. He can't state categorically whether or not McManus had Lyme, however, Hudson does believe there is Lyme, or an indigenous similar illness, in Australia, carried by ticks or perhaps some other blood-sucking insect, although he's not sure how common it is. Illness following a tick bite is "probably massively under-diagnosed", he suggests. "As to what that illness is, that's more difficult ... For instance, there's a thing called red meat allergy, related to tick bites. People have been known to develop life-threatening allergic reactions to red meat, triggered by tick bite. The tick saliva has got a lot of stuff in it that changes your immune response, because the tick has to be able to stick on you to get a blood meal. It can change what the cells are doing locally and those cells don't stay there - they go to other parts of your body." Tick-borne bacteria can lie dormant in the body and severe symptoms may not appear for months or even years, by which time people have forgotten about a tick bite, assuming they were aware of it to begin with. Akinci McManus, who is also a pharmacist with an honours degree in immunology, a master's in haematology, a PhD in neuropharmacology, and was a postdoctoral fellow at the Garvan Institute, believes tick-borne bacteria could be involved in many more diseases than we realise, because the symptoms mimic so many other conditions. "Say you're diagnosed with Parkinson's. The doctor will say it's an auto-immune disease. You're not going to think, 'Oh, remember that time I was working in the garden and got bitten by a tick?'" On the other hand, a tick bite might have nothing to do with such an illness; the causes of many of these diseases, like Parkinson's, multiple sclerosis and motor neurone disease, are still unknown. Her point is, has it been ruled out in diagnosis? In America and Europe, where Lyme disease is common, the erythema migrans (EM) or bullseye rash, which can be an early symptom of Lyme but shows up in only 60 to 80 per cent of cases, usually sets off alarm bells. Here, it's more likely to be met with well-meaning ignorance. One Sydney woman, who wants to be known only as Kate, told Good Weekend she developed a textbook rash, taking up half her thigh, soon after lunching on Sydney's northern beaches, anecdotally a notorious spot for infected ticks. (Rickettsia, or spotted fever, a less-serious bacterial tick-borne illness, is common in the area, according to Hudson, as well as being found in northern NSW, Tasmania, Queensland and eastern Victoria.) Kate didn't realise it was a tick that had bitten her. When she showed the rash to her local chemist, the staff had no idea what it was and gave her steroid cream. "It went down, almost overnight, and I forgot about it," Kate says. "That was in February. By July, I had some weird things happening in my head - a kind of 'eeeh, eeeh' noise like my brain was stopping and starting. Every time I got a breeze on my hands it felt so freezing. I started feeling exhausted and confused. I was attending a class and couldn't understand what the teacher was telling me." Her symptoms grew worse. Her hand wouldn't work properly, she started to drag her left leg. Her skin burned. It wasn't until she heard a radio report about McManus that it occurred to her it might be Lyme. When she Googled it, there was her rash. The first doctor she spoke to told her the idea was "rubbish". "He said Lyme doesn't exist here and that I'd been spending too much time on the internet." She had to beg and plead to be referred to Bernie Hudson. She says he confirmed she had Lyme disease, or a Lyme-like disease, and is now treating her with courses of antibiotics. Says Kate, "In any country that recognises it, a person presenting with a tick bite and the bullseye rash would have a good chance of early treatment - a few weeks of very cheap antibiotics. Here, a patient has to get really sick, eventually work out themselves what's wrong, rally all their resources at a time when they're largely dysfunctional, and fight for treatment, not just against disinterest but against outright opposition coming from people who should be sympathetic." Many doctors are reluctant to prescribe anti-biotics for a disease that isn't supposed to be here and that may show up negative in blood tests. But early treatment is key and Hudson, among others, believes it's better not to risk letting the disease get a grip. "Whether you believe it exists here or not, if you give someone 14 days of antibiotics [tetracyclines] the first time they appear with what looks like Lyme disease, you'll probably save them a lot of grief," he says. "I've been saying that for years. I think that's why on the northern beaches, even if the doctors don't agree, they will sometimes relent and give the patient the antibiotics." Perhaps jolted by the McManus case, and more reports of patients with Lyme-like symptoms, the NSW Health Department is now undertaking an epidemiological study of reported cases. The results will be presented to a panel of experts "to try to figure out what's going on", says Jeremy McAnulty, director of the department's Centre for Health Protection. Does he believe it's here? "The evidence so far doesn't point to the fact that Lyme disease is in Australia, but I can't say categorically that it's not. If it is here, it's not affecting a lot of people. The people who report symptoms, of course, have something. The challenge is to diagnose accurately what they have." Sick or crazy? Lyme disease is rife in america, with a conservative estimate of 16,000 to 20,000 new cases a year, and is also common in Europe, Russia, parts of Asia and, increasingly, the UK - almost every continent, in fact, except Australia, according to health officials here. Some estimates claim it's one of the fastest-growing infectious diseases in the world, although that may be due to more widespread diagnosis. As a condition, it was known about early in the 20th century but it wasn't named Lyme disease until the 1970s, after a group of US children from the town of Lyme, Connecticut, and neighbouring districts, developed strange arthritic symptoms. They were diagnosed with juvenile rheumatoid arthritis. However, two concerned mothers thought the cluster - eight times the national average rate for the incidence of juvenile arthritis - must be related to environmental factors and, through hard slog, managed to get an official investigation under way. The common factor was that all the children lived and played in wooded areas, where ticks were rife in spring. Many had developed a rash after being bitten. Eventually, the illness was traced to Borrelia bacteria carried by ticks. Borrelia is a spirochete, a corkscrew-shaped bacterium from the same family as syphilis. It's passed to humans by ticks that have picked it up from infected mammals, commonly deer, rodents or birds. Those who believe it's in Australia have proposed bandicoots, dogs, wallabies and kangaroos as possible carriers. Like syphilis, Lyme is called "the great imitator" because it mimics many other illnesses and produces a dazzling, painful array of vague but very real symptoms that zoom erratically around the body, coming and going as the immune system wages an internal war on the bacteria. It can lie dormant for years and then appear or reappear. Not everyone bitten by an infected tick will become ill or very ill. It depends on genetic make-up. Although it's rarely fatal, Lyme can cause changes in the brain, produce mild or severe skin conditions and blight almost every organ in the body, from the brain to the heart. Different species of the bacteria produce different symptoms, some more arthritic, some neurological. Early symptoms can include flu-like symptoms, joint swelling, headaches, dizziness, fatigue, depression and the distinctive erythema migrans rash, characteristically circular but not always. The rash can appear anywhere from three to 30 days after a bite, but a rash can also just indicate an allergic reaction to a tick bite. Left untreated, the bacteria can spread through the bloodstream to joints, the heart, the nervous system and other parts of the skin. Depending on the stage, the neurological form can cause facial palsy, meningitis, shooting pains, memory loss and mood swings. Just to complicate matters, people can suffer co-infections from other parasites or bacteria carried by the same tick. This may explain why some people continue to be ill even after receiving treatment to kill off Borrelia. Because it can look like so many other illnesses, people with Lyme often complain of having been misdiagnosed, sometimes for years, with other conditions. One of the dangers of misdiagnosis, of failing to recognise the problem is bacterial, is that patients may find themselves on drugs like immunosuppressants or steroid treatments like cortisone that can worsen bacterial infections. (Conversely, it's argued that people can be misdiagnosed with Lyme and thus not treated for the illness they actually have.) Some Lyme advocacy groups estimate there are about 350 other illnesses it can be mistaken for, but the common ones are depression, fibromyalgia, multiple sclerosis, rheumatoid arthritis, scleroderma, motor neurone disease, Parkinson's disease, lupus and chronic fatigue syndrome - as well as flights of fancy and neurosis. Victorian woman Rosemary Trudeau, who runs the internet site LymeOz, believes she has had Lyme for the past 22 years, 16 of them without knowing what it was. She says she ended up in a wheelchair, barely able to swallow or breathe, weighing 41 kilograms and close to death. She was variously told she had glandular fever, chronic fatigue, MS, depression. At one point she thought it might be lupus. "So I went to the GP and said, 'Can I have a test for that?' I was in my 20s and I couldn't even hold my head up. I had to rest it on his desk. But instead of doing a test for lupus, he thought I was nuts and put me in a psychiatric ward for a week. After a while I said, 'Look, I'm not crazy, I'm just sick', and they agreed and sent me home." (Trudeau believes she contracted Lyme through an ex-partner, who had developed the EM rash after a visit to Queensland. However, there's debate about whether, like syphilis, it can be transmitted sexually, or via the placenta.) Even conditions like ADHD and autism have been linked to Borrelia, although that research is hypothetical. Some Lyme sites tell stories of children undergoing sudden personality changes, or experiencing learning difficulties months after, for example, returning from a camping trip. It's easy to see why a patient would rather think they had a treatable disease like Lyme than, say, an incurable one like motor neurone; everyone wants hope. But it's also possible they actually do have Lyme, or some local version. Could it be that we just haven't pinpointed the right strain of the micro-organism? Could it be that the tests we are using don't suit Australian conditions? Mixed opinions In medical and scientific circles it's not uncommon for opinions to differ about diagnoses depending on various research studies. In Australia, a scientific study carried out 17 years ago forms the backbone of our public-health policy on Lyme disease. That study, led by Richard Russell and Stephen Doggett, two entomologists at Westmead Hospital, the hospital now responsible for much of the diagnostic testing for borreliosis, looked at 12,000 ticks at the time and found "no conclusive evidence" Australian ticks carried spirochetes. Interviewed by The Sydney Morning Herald last year, Doggett maintained that position. "There's not one piece of scientific evidence to say Lyme occurs in Australia. There are reputations built on the existence of Lyme disease in Australia. People are embarrassed ... to admit it's not here." However, several other reputable scientists Good Weekend spoke to had criticisms about some aspects of that mid-1990s paper. For that matter, while its conclusions were firm and the two scientists are experts in their field, the paper itself contained some provisos. Isolating the bacteria is complex and the absence of evidence is not evidence of absence. Around that same time, a PhD student, Michelle Wills, undertook work with University of Newcastle virologist Professor Richard Barry. They found at very least "presumptive evidence", Barry says, of spirochetes in Australian ticks, as had earlier work in the 1950s. Later, in conjunction with Bernie Hudson, they carried out serological tests on more than 2000 symptomatic patients suspected of Lyme and found what appeared to be some positive results. Lack of funding meant they couldn't try to put those two pieces together: it wasn't enough to find a spirochete or find sick people - they needed to show that a spirochete caused that illness. Barry says their findings were overshadowed by the Westmead work, which, funded by the National Health and Medical Research Council, "became the orthodoxy". And medical orthodoxy is slow to shift, notes Professor Tim Roberts, a microbiologist at the University of Newcastle who also believes Lyme exists here, persuaded by clinical evidence and the Wills/Barry work. "New discoveries in science take a long, long time to be accepted, particularly in clinical medicine. Look at the history of gastric ulcers. It took 17 years before the Royal Australasian College of GPs actually acknowledged that one should test for [the bacterium] Helicobacter pylori if someone's got an ulcer. Seventeen years!" Researchers like Barry, Wills and Hudson think it's plausible we have an unknown strain or species of Borrelia here, which may not show up in existing tests, and even Russell and Doggett have acknowledged that possibility, although there's no hard evidence so far and, as their paper pointed out, Australia doesn't have the species of Lyme ticks found in the northern hemisphere. But given that so many strains of Borrelia have found their way around the world, is it so unlikely it has also found its way here? Migratory birds carrying ticks are an obvious source, says Richard Barry. He points out that a common northern European strain of Borrelia, called garinii, is found in ticks carried by birds like shearwaters. "Where do shearwaters migrate in the world?" he asks rhetorically. "They come down from the northern hemisphere and, occasionally, they do a lot of dying off the east coast of NSW. They're also called muttonbirds. "They nest in the sandhills and then prepare to fly back. If garinii occurs in the tick that infests these birds, and these birds nest along the NSW coast, and our tick population is located largely in the eastern coastal region, what if these ticks get into, say, bandicoots and set up a new ecological cycle?" When other ticks bite the infected bandicoot, they pick up the bacteria. From there, it can be passed to humans. "That scenario is more than possible. It's highly possible." Researchers have found at least 18 varieties of Borrelia that can cause Lyme disease, and more may turn up. Different types can cause different symptoms. The US species Borrelia burgdorferi causes mainly arthritic symptoms. Borrelia garinii, one of two major strains in Europe, causes neurological symptoms, from twitching to muscle fatigue, memory loss and panic attacks. Another, afzelii, is thought to cause a severe skin condition called acrodermatitis chronica atrophicans (see Ticked Off, left). For now, in the absence of further research, the mysteries remain. Is Lyme disease in Australia? And if so, how widespread is it? Bernie Hudson remembers being at a conference some years ago and presenting his findings of 12 or 15 positive results for Borrelia out of 150 skin biopsies he had taken from Lyme suspects. Another researcher at the conference said dismissively, "Well, that's not many." Did that comment worry him? "It starts like this. First they say, 'No it doesn't occur.' Then they say, 'Oh, you've got some positives. All right, there's a few there.' Then they go, 'Jeez, it's more common than we thought.' And then the last thing is, 'Shit, everyone's got it.' "No need to panic, however. It's not swine flu. Says Michelle Wills, "You've got to keep it in perspective. You don't want people to be phobic about ticks. It's like mosquitoes: you get bitten but you're not going to end up with Ross River fever unless you're very unlucky, and it's the same with Lyme. Some people are unlucky. It's just a matter of making sure there's appropriate treatment available for the unlucky ones." The first step, however, is agreeing there's something that needs to be treated. The enemy Ticks are most active in spring or summer. They like humidity and can't survive very dry conditions. Prompt removal is important. Use blunt forceps or fine tweezers, grasping the tick behind its head as close to the skin as possible, without twisting. If head or mouth parts are left, don't try to dig them out; they will drop off later. With infestations of tiny ticks (ticks at larval stage - often called, incorrectly, "grass ticks"), try a 30-minute bath with a cup of bicarbonate of soda added. Ticked off Ask Wayne Bowen, a NSW farmer, to describe his symptoms and he sighs. The list includes fatigue, stiffness, muscle twitches, pins and needles, sudden headaches and crushing pain, aching eyeballs, and "feeling like razor blades are slashing my heels". "I sound like a whinger, don't I?" he says. Like many of the people Good Weekend spoke to, Bowen also suffers "brain fog" and memory loss and is highly sensitive to noise and light. A test through Australian Biologics, a private laboratory, found "something similar to" Borrelia valaisiana (a species of bacteria found in Russia and China) and Bowen believes he is also suffering from acrodermatitis chronica atrophicans (ACA), a painful skin condition associated with European Lyme disease. Bowen has never been out of Australia, but he has been bitten often by ticks and three times developed the telltale bullseye EM rash. The diagnosis of ACA, and of Lyme, was made by Laurieton dermatologist Peter Mayne, but Bowen says he has yet to convince his specialists. They've dismissed the positive test as unreliable. Instead, Bowen has been told he has sarcoidosis. He says, "Sarcoidosis seems to be a last-resort diagnosis when they can't find anything else. But I've also read that it can be Lyme-related. The lady who used to live next door also had it. Sarcoidosis is a one in 20,000 disease in Australia, maybe one in 10,000. What are the odds of the woman next door having it? If you Google 'sarcoidosis and rural areas', you find it's much more prominent there. You have to wonder, well, what's out in the bush?" Ticks, for one thing.

Although it's rarely fatal, Lyme can cause changes in the brain, produce mild or severe skin conditions and blight almost every organ in the body, from the brain to the heart. Different species of the bacteria produce different symptoms, some more arthritic, some neurological.

Early symptoms can include flu-like symptoms, joint swelling, headaches, dizziness, fatigue, depression and the distinctive erythema migrans rash, characteristically circular but not always. The rash can appear anywhere from three to 30 days after a bite, but a rash can also just indicate an allergic reaction to a tick bite.

Left untreated, the bacteria can spread through the bloodstream to joints, the heart, the nervous system and other parts of the skin. Depending on the stage, the neurological form can cause facial palsy, meningitis, shooting pains, memory loss and mood swings. Just to complicate matters, people can suffer co-infections from other parasites or bacteria carried by the same tick. This may explain why some people continue to be ill even after receiving treatment to kill off Borrelia.

Because it can look like so many other illnesses, people with Lyme often complain of having been misdiagnosed, sometimes for years, with other conditions. One of the dangers of misdiagnosis, of failing to recognise the problem is bacterial, is that patients may find themselves on drugs like immunosuppressants or steroid treatments like cortisone that can worsen bacterial infections. (Conversely, it's argued that people can be misdiagnosed with Lyme and thus not treated for the illness they actually have.)

Some Lyme advocacy groups estimate there are about 350 other illnesses it can be mistaken for, but the common ones are depression, fibromyalgia, multiple sclerosis, rheumatoid arthritis, scleroderma, motor neurone disease, Parkinson's disease, lupus and chronic fatigue syndrome - as well as flights of fancy and neurosis.

Victorian woman Rosemary Trudeau, who runs the internet site LymeOz, believes she has had Lyme for the past 22 years, 16 of them without knowing what it was. She says she ended up in a wheelchair, barely able to swallow or breathe, weighing 41 kilograms and close to death. She was variously told she had glandular fever, chronic fatigue, MS, depression. At one point she thought it might be lupus. "So I went to the GP and said, 'Can I have a test for that?' I was in my 20s and I couldn't even hold my head up. I had to rest it on his desk. But instead of doing a test for lupus, he thought I was nuts and put me in a psychiatric ward for a week. After a while I said, 'Look, I'm not crazy, I'm just sick', and they agreed and sent me home."

(Trudeau believes she contracted Lyme through an ex-partner, who had developed the EM rash after a visit to Queensland. However, there's debate about whether, like syphilis, it can be transmitted sexually, or via the placenta.)

Even conditions like ADHD and autism have been linked to Borrelia, although that research is hypothetical. Some Lyme sites tell stories of children undergoing sudden personality changes, or experiencing learning difficulties months after, for example, returning from a camping trip.

It's easy to see why a patient would rather think they had a treatable disease like Lyme than, say, an incurable one like motor neurone; everyone wants hope. But it's also possible they actually do have Lyme, or some local version. Could it be that we just haven't pinpointed the right strain of the micro-organism? Could it be that the tests we are using don't suit Australian conditions?

Mixed opinions

In medical and scientific circles it's not uncommon for opinions to differ about diagnoses depending on various research studies. In Australia, a scientific study carried out 17 years ago forms the backbone of our public-health policy on Lyme disease. That study, led by Richard Russell and Stephen Doggett, two entomologists at Westmead Hospital, the hospital now responsible for much of the diagnostic testing for borreliosis, looked at 12,000 ticks at the time and found "no conclusive evidence" Australian ticks carried spirochetes. Interviewed by The Sydney Morning Herald last year, Doggett maintained that position. "There's not one piece of scientific evidence to say Lyme occurs in Australia. There are reputations built on the existence of Lyme disease in Australia. People are embarrassed ... to admit it's not here."

However, several other reputable scientists Good Weekend spoke to had criticisms about some aspects of that mid-1990s paper. For that matter, while its conclusions were firm and the two scientists are experts in their field, the paper itself contained some provisos. Isolating the bacteria is complex and the absence of evidence is not evidence of absence.

Around that same time, a PhD student, Michelle Wills, undertook work with University of Newcastle virologist Professor Richard Barry. They found at very least "presumptive evidence", Barry says, of spirochetes in Australian ticks, as had earlier work in the 1950s. Later, in conjunction with Bernie Hudson, they carried out serological tests on more than 2000 symptomatic patients suspected of Lyme and found what appeared to be some positive results. Lack of funding meant they couldn't try to put those two pieces together: it wasn't enough to find a spirochete or find sick people - they needed to show that a spirochete caused that illness.

Barry says their findings were overshadowed by the Westmead work, which, funded by the National Health and Medical Research Council, "became the orthodoxy". And medical orthodoxy is slow to shift, notes Professor Tim Roberts, a microbiologist at the University of Newcastle who also believes Lyme exists here, persuaded by clinical evidence and the Wills/Barry work. "New discoveries in science take a long, long time to be accepted, particularly in clinical medicine. Look at the history of gastric ulcers. It took 17 years before the Royal Australasian College of GPs actually acknowledged that one should test for [the bacterium] Helicobacter pylori if someone's got an ulcer. Seventeen years!"

Researchers like Barry, Wills and Hudson think it's plausible we have an unknown strain or species of Borrelia here, which may not show up in existing tests, and even Russell and Doggett have acknowledged that possibility, although there's no hard evidence so far and, as their paper pointed out, Australia doesn't have the species of Lyme ticks found in the northern hemisphere.

But given that so many strains of Borrelia have found their way around the world, is it so unlikely it has also found its way here? Migratory birds carrying ticks are an obvious source, says Richard Barry. He points out that a common northern European strain of Borrelia, called garinii, is found in ticks carried by birds like shearwaters. "Where do shearwaters migrate in the world?" he asks rhetorically. "They come down from the northern hemisphere and, occasionally, they do a lot of dying off the east coast of NSW. They're also called muttonbirds.

"They nest in the sandhills and then prepare to fly back. If garinii occurs in the tick that infests these birds, and these birds nest along the NSW coast, and our tick population is located largely in the eastern coastal region, what if these ticks get into, say, bandicoots and set up a new ecological cycle?" When other ticks bite the infected bandicoot, they pick up the bacteria. From there, it can be passed to humans. "That scenario is more than possible. It's highly possible."

Researchers have found at least 18 varieties of Borrelia that can cause Lyme disease, and more may turn up. Different types can cause different symptoms. The US species Borrelia burgdorferi causes mainly arthritic symptoms. Borrelia garinii, one of two major strains in Europe, causes neurological symptoms, from twitching to muscle fatigue, memory loss and panic attacks. Another, afzelii, is thought to cause a severe skin condition called acrodermatitis chronica atrophicans (see Ticked Off, left).

For now, in the absence of further research, the mysteries remain. Is Lyme disease in Australia? And if so, how widespread is it? Bernie Hudson remembers being at a conference some years ago and presenting his findings of 12 or 15 positive results for Borrelia out of 150 skin biopsies he had taken from Lyme suspects. Another researcher at the conference said dismissively, "Well, that's not many." Did that comment worry him?

"It starts like this. First they say, 'No it doesn't occur.' Then they say, 'Oh, you've got some positives. All right, there's a few there.' Then they go, 'Jeez, it's more common than we thought.' And then the last thing is, 'Shit, everyone's got it.'

"No need to panic, however. It's not swine flu. Says Michelle Wills, "You've got to keep it in perspective. You don't want people to be phobic about ticks. It's like mosquitoes: you get bitten but you're not going to end up with Ross River fever unless you're very unlucky, and it's the same with Lyme. Some people are unlucky. It's just a matter of making sure there's appropriate treatment available for the unlucky ones."

The first step, however, is agreeing there's something that needs to be treated.

The enemy

Ticks are most active in spring or summer. They like humidity and can't survive very dry conditions.

Prompt removal is important. Use blunt forceps or fine tweezers, grasping the tick behind its head as close to the skin as possible, without twisting. If head or mouth parts are left, don't try to dig them out; they will drop off later. With infestations of tiny ticks (ticks at larval stage - often called, incorrectly, "grass ticks"), try a 30-minute bath with a cup of bicarbonate of soda added.

Ticked off

Ask Wayne Bowen, a NSW farmer, to describe his symptoms and he sighs. The list includes fatigue, stiffness, muscle twitches, pins and needles, sudden headaches and crushing pain, aching eyeballs, and "feeling like razor blades are slashing my heels". "I sound like a whinger, don't I?" he says.

Like many of the people Good Weekend spoke to, Bowen also suffers "brain fog" and memory loss and is highly sensitive to noise and light. A test through Australian Biologics, a private laboratory, found "something similar to" Borrelia valaisiana (a species of bacteria found in Russia and China) and Bowen believes he is also suffering from acrodermatitis chronica atrophicans (ACA), a painful skin condition associated with European Lyme disease.

Bowen has never been out of Australia, but he has been bitten often by ticks and three times developed the telltale bullseye EM rash.

The diagnosis of ACA, and of Lyme, was made by Laurieton dermatologist Peter Mayne, but Bowen says he has yet to convince his specialists. They've dismissed the positive test as unreliable. Instead, Bowen has been told he has sarcoidosis.

He says, "Sarcoidosis seems to be a last-resort diagnosis when they can't find anything else. But I've also read that it can be Lyme-related. The lady who used to live next door also had it. Sarcoidosis is a one in 20,000 disease in Australia, maybe one in 10,000. What are the odds of the woman next door having it? If you Google 'sarcoidosis and rural areas', you find it's much more prominent there. You have to wonder, well, what's out in the bush?" Ticks, for one thing.
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