Lyme disease and co-infections:
Lyme Disease is primarily thought of as a tick borne infection although some authorities also believe it is carried by other biting insects and transferred via sexual contact or in the womb. It is endemic to many parts of the world, but its existence in Australia has not been proven, although many Australians who have not left the country have tested positive for the causative agent and/or the co-infections associated with it and are clearly suffering from a Lyme–like illness.
Caused by the spirochete Borrelia burgdorferi, it can attack the skin, joints, eyes, heart and nervous system, and just like MS may manifest as a neuropsychiatric and/or neuromuscular condition. Just like MS, many patients with undiagnosed Lyme are referred to psychiatrists with the assumption that the multiple symptoms they are experiencing are ‘all in their head’.
The Borellia species known to cause classic Lyme internationally has not been isolated in Australian ticks. However, Australian ticks are already known to cause severe allergic reactions, neurotoxin paralysis, mammalian meat allergy and carry infections such as typhus. Many Australians are sick with a disease that follows a tick bite, and presents exactly like Lyme Disease. A more coherent effort is now finally being made to isolate the infectious agent in Australian ticks that is causing the domestic version of a Lyme–like illness http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
Lyme disease has been called the great imitator and in some areas where Lyme is endemic it is a standard differential diagnosis for MS. In progressive MS, the spinal cord is more often involved than the brain, and this document notes the difficulty of analysing spinal cord lesions as regards to differential diagnosis, and specifically notes that Lyme Disease (neuroborelliosis) is a differential diagnosis http://www.jneurovirol.com/pdf/6(s2)/s130-s133.pdf
It is entirely possible that there is a domestic Lyme–like illness in Australia, or that Australian MS patients could have been infected in a country where Lyme is well known.
It may therefore be wise for those with MS–like symptoms awaiting a diagnosis, or newly diagnosed MS patients to have their Lyme disease status checked thoroughly, as early in the disease course as possible.
This may be especially important where a person has an obviously progressive course of MS that is typical of chronic or late stage Lyme, or where the MS and Lyme symptoms overlap. This may be particularly indicated where there is evidence of Lyme–like symptoms that are not generally thought of as being MS related, such as gastrointestinal problems, sensitivities to light, noise or odours, tinnitus, bruising easily, mottled or blotchy skin, cold hands and feet, chills and/or shakes, flu-like symptoms, low body temperature, painful lymph nodes, night sweats, rapid heartbeat and/or dizziness on standing, often feeling hot or cold irrespective of actual ambient temperature and body temperature, cardiac irregularities, air hunger, muscle twitches, joint or arthritic pain, migratory joint and/or muscle pain, floaters in the eyes, and so on.
The master list of Lyme Disease symptoms is a bewilderingly long list and can be found here http://www.anapsid.org/lyme/masterlymesymptoms.pdf
Not everyone with Lyme Disease will manifest all of those symptoms of course, but they could potentially manifest any of them. Reading through that master list a person with MS can readily identify if there are other symptoms that relate more to Lyme than MS, or Lyme Disease as well as MS. If there is a history of tick bites with or without the classic bull’s eye rash that may account for these symptoms, then consulting a Lyme literate medical doctor (LLMD) may be a wise precaution.
If a person has a diagnosis of MS, but also has a Lyme Disease infection, then the prescription of steroids, or one of the immune modulating or immune suppressing drugs that are routinely prescribed in MS are perhaps not indicated, because they may well help the Lyme Disease to gain the upper hand, by suppressing the immune response to this infection.
The common co-infections associated with Lyme Disease include Babesia, Bartonella, Ehrlichia, Anaplasma, Rickettsia, Mycoplasama and Chlamydophila pnumoniae. This Lyme Disease website lists some of these co-infections, and some of the symptoms associated with them http://whatislyme.com/co-infections/
It is important to note that co-infections may complicate recovery from Lyme disease, or add to the baffling array of symptoms with which the patient presents. Severe neurological symptoms in particular, or resistance to treatment may well indicate the presence of one or more co-infections. It is possible that someone testing negatively for Lyme spirochetes will have one or more of these co-infections from the tick bite, so a negative Lyme test does not rule out another tick borne infection.
In a nutshell:
More detail:
Lyme disease can cause all of the symptoms of MS, including lesions seen on MRI
Lyme Disease has been called the great imitator, since it can present as almost any illness. In terms of overlap with MS symptomology, the person with Lyme Disease can develop intolerance to heat or cold, extreme fatigue after minimal exertion, severe weakness of limbs, paralysis, muscle aches and pain, stiffness, paresthesia’s (numbness, tingling, crawling, itching sensations) in face, head, torso or extremities, stabbing or shooting pains, electric shock – like pains, cognitive decline, tremors, impaired coordination, impaired gait, loss of balance when standing with eyes closed, general balance issues, slowed and/or slurred speech, word-finding difficulty, using the wrong word, constipation, incontinence, blurred vision, optic neuritis, anxiety, depression, sensory changes on the skin and so on.
This site lists some of the literature which examines the similarities between Lyme Disease and MS symptoms http://lymeinfo.net/multiplesclerosis.html
These neurological manifestations of Lyme Disease are known as neuroborreliosis. This International Neurourology Journal article notes some of the late stage Lyme Disease symptoms and discusses the symptom of neurogenic bladder, which is common to both Lyme Disease and Multiple Sclerosis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547183/
If diagnosed and treated early, a quick and full recovery can be made
The American Centers for Disease Control and Prevention (CDC) notes at http://www.cdc.gov/lyme/treatment/index.html that “Patients treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. Antibiotics commonly used for oral treatment include doxycycline, amoxicillin, or cefuroxime axetil. Patients with certain neurological or cardiac forms of illness may require intravenous treatment with drugs such as ceftriaxone or penicillin.” This document notes that recovery ‘usually’ takes place in ‘early’ stages of Lyme only and also notes the existence of ‘chronic Lyme’ which it refers to as ‘post treatment Lyme Disease syndrome’. It also notes that serious neurological and cardiac Lyme symptoms exist, and that they may be resistant to oral antibiotics. It does not refer to late stage Lyme Disease, where the disease is not diagnosed until it is deeply entrenched in the body, and is causing multiple neuropsychiatric issues.
In some susceptible individuals the treatment is not successful and chronic Lyme (or post treatment Lyme) develops with some patients progressing to the point of becoming wheelchair bound or bed bound
Prompt treatment of Lyme Disease can result in complete recovery, or only partial recovery. However, in certain individuals, symptoms can persist or progressively worsen. This is unsurprising because everybody is different, and the simplistic notion that a short course of antibiotics can cure everyone ignores the incredible resilience of the Lyme spirochete, the duration of its lifecycle and the time needed to successfully kill it’s various forms, its capacity to evade the immune system using biological strategies or reinfection from immune privileged areas of the body, the existence of one or more co-infections, the resilience and immune status of the infected person, or the possibility of repeated re-infection.
If not diagnosed and treated early then severe disability can develop (just as in chronic or post - treatment Lyme) but since it has gone undiagnosed and untreated for so long, it is usually referred to as late stage Lyme
Obtaining a diagnosis of Lyme Disease can be difficult even in areas where the disease is endemic. This may be for a variety of reasons including the ignorance or bias of physicians (you cannot diagnose what you don’t know about or don’t believe in), the fact that Lyme Disease can present with symptoms that look like other diseases, and the severe variability of individual immune responses and the unreliability of tests, among others.
By the time neuroborreliosis becomes evident to a physician, or a patient insists on a thorough testing regime and/or a referral to a Lyme literate MD, the disease may be thoroughly disseminated and entrenched and the patient may be suffering severe neurological disability which is manifesting both physically and mentally.
It is obvious that treating a Lyme infection of many year’s (perhaps decade’s) duration is an entirely different proposition to treating an otherwise healthy person who presents to their doctor with a recent tick bite and a bull’s eye rash. However, not everyone with Lyme Disease will get the classic rash, or even remember a tick bite. Some ticks that transmit Lyme are almost too small to be seen, and are easily overlooked on the skin. Others may be bitten in an area that is difficult to examine (like the hair on the head), or will be bitten by another biting insect that does not attach to the host. In Australia, other insects thought to carry Lyme Disease are stick-fast fleas and March Flies.
Late stage Lyme disease is also known as stage three or tertiary Lyme Disease. This Medscape article concisely but comprehensively lists the three stages of Lyme Disease http://emedicine.medscape.com/article/330178-clinical
It is extraordinary that there is any controversy surrounding late stage Lyme. Imagine a disease that has been allowed to run rampant in a person’s body for years or even decades, damaging multiple organs in the process, and then imagine the expectation that the infection will be eradicated in a matter of weeks, and that the severe neurological damage a person has experienced will repair itself without further treatment or rehabilitation. This is extraordinary. The treatment of tuberculosis can take more than two years to treat. This CDC site notes that treatment of Q fever responds best to early treatment (3 days), that, chronic Q fever exists, and that chronic Q fever can take up to four years to treat http://www.bt.cdc.gov/agent/qfever/clinicians/treatment.asp yet with Lyme disease, patients who present with persistent Lyme symptoms are often regarded with skepticism. Why?
This Karl McManus foundation page explains why the lifecycle of Borrelia, indicates why antibiotic treatment over a period as long as three years may be necessary http://www.karlmcmanusfoundation.org.au/what-is-lyme-disease
Late stage Lyme is simply the outcome of a disease that has gone untreated for a long period of time, progressively damaging the body, and which can present exactly like multiple sclerosis.
Like MS, Lyme diagnosis is meant to be a clinical diagnosis backed up by laboratory tests, but in practice the laboratory tests may be held to be the gold standard for diagnosis
The International Lyme and Associated Diseases Society notes in their document “Evidence-based guidelines for the management of Lyme Disease”; “Lyme disease is a clinical diagnosis and tests should be used to support rather than supersede the physician’s judgment.” http://www.ilads.org/lyme/ILADS_Guidelines.pdf
Anecdotally however, many doctors (if they look for Lyme at all) appear reluctant to treat unless laboratory tests are conclusive. In Australia, there is anecdotal evidence of positive Lyme tests being rejected as impossible. This link notes one of these cases, an anecdote from a Western Australian doctor who has treated many cases of Lyme Disease. The link also has an embedded podcast which discusses Australian Lyme–like illness http://blogs.abc.net.au/nt/2014/03/thousands-of-australians-have-lyme-disease-and-dont-know-it.html?program=darwin_afternoons
So, as a result of the notorious unreliability of the tests, the onerous testing regime required to return a positive result, plus physician skepticism, a patient can be in the unenviable position of being untreated if the test(s) are negative, and untreated if the tests are positive.
Laboratory tests for Lyme Disease are regarded as being notoriously inaccurate and fraught with uncertainty for many different reasons and anecdotally, even when positive, some physicians can be reluctant to accept the test result
The gold standard for Lyme Disease testing is a ‘two tier’ test. This testing regime appears to have been outlined by the US CDC, and adopted by many countries. On its web page, the CDC notes that “Laboratory testing can be an important aid in the diagnosis of Lyme disease… patients who have had Lyme disease for longer than 4-6 weeks, especially those with later stages of illness involving the brain or the joints, will almost always test positive. A patient who has been ill for months or years and has a negative test almost certainly does not have Lyme disease as the cause of their symptoms.” “Can be an important aid… will almost always… almost certainly…” http://www.cdc.gov/lyme/diagnosistreatment/LabTest/
On its page relating to the two tier test, the CDC has this to say; “CDC currently recommends a two-step process when testing blood for evidence of antibodies against the Lyme disease bacteria. Both steps can be done using the same blood sample. The first step uses a testing procedure called “EIA” (enzyme immunoassay) or rarely, an “IFA” (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate (sometimes called "equivocal"), the second step should be performed. The second step uses a test called an immunoblot test, commonly, a “Western blot” test. Results are considered positive only if the EIA/IFA and the immunoblot are both positive. The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.”
So, if the first test is negative, it is the end of the road for the patient, and if they have the disease it will remain untreated and may rampage through their body, destroying their life. If the first test is positive, the CDC does not accept it and recommends a second test. So, if the first test is positive but the second test is negative, it is also the end of the road for the patient, and if they have the disease it will remain untreated and may rampage through their body, destroying their life. Only if both of these tests are positive does the CDC accept that a person is infected. However, the CDC advises that “if the patient has had symptoms for more than 30 days, the IgG Western Blot is performed. The IgM should not be used if the patient has been ill for more than 30 days.”
http://www.cdc.gov/lyme/diagnosistesting/LabTest/TwoStep/index.html
If a physician conducts both of these tests, the CDC goes on to state that “If you’ve been ill for longer than 4-6 weeks and the IgG immunoblot test is negative, it is unlikely that you have Lyme disease, even if the IgM immunoblot is positive.” ‘Unlikely!’ So, not only must the first test be positive, but the CDC wants both the IgM and IgG Western Blot test to be positive too. So irrespective of your actual clinical disease status, unless you fulfil all of these criteria, a doctor who is aware of this disease and is checking for you, may well rule out Lyme and must necessarily look for some other disease to label as the cause of your symptoms. If that label is MS, the patient will be doomed to ‘live’ with an untreated infection that will most likely progressively destroy their life. http://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/westernblot/index.html
The CDC has set an almost impossible standard for positive laboratory testing for Lyme Disease, which is testing that it first acknowledges is only “an important aid in the diagnosis of Lyme disease.”
This French video (with sub-titles) sums up very succinctly and directly the potentially catastrophic problems created for patients by this two tier testing regime.
https://www.youtube.com/watch?v=ABji9ebeKf0&feature=youtu.be
The report implies that the young person in this video was only eventually diagnosed because there was photographic evidence of the classic bull’s eye rash of Lyme disease. Bizarrely, a history of tick bite (in a Lyme endemic area) followed by Bull’s eye rash is sufficient for a diagnosis of Lyme disease and a patient can be treated without further testing. However, if the rash is overlooked for one reason or another, and the patient fails the first tier Eliza test, then according to the CDC testing regime, they do not have Lyme Disease and cannot be treated. If the person in the video did not have a photo of the rash, who knows what the ultimate outcome of an untreated Lyme infection would have been?
This also illustrates the fact that the problems seen in chronic or late stage Lyme, seem to relate to an aberrant immune response in the host, which in itself is likely to cause testing complications. Every body is different, so why is there an assumption that everyone will respond exactly the same to a test, or to a standard treatment regime? The tests which look for antibodies assume that the patient can produce these antibodies at the right time, and that they do not have a compromised immune system for any reason, and that the spirochete itself has not modulated the immune system to protect itself.
The French video also illustrates the lack of physician knowledge (even in countries where Lyme is endemic), and possible physician prejudice or laziness, seen here as an assumption that psychiatric illness was the cause of this person’s paralysis.
This Australian website discusses the problems with current tests http://www.karlmcmanusfoundation.org.au/testing and here the same website discusses the problems with Australian laboratory testing in particular http://www.karlmcmanusfoundation.org.au/mkf-reply-to-rcpa
This NSW (Australian) Government websites provides advice to clinicians in relation to the testing of patients for Lyme along US CDC lines, and is indicative of the difficulties patients face http://www.health.nsw.gov.au/Infectious/factsheets/Documents/lyme-disease-testing-advice.pdf
This site chillingly outlines the potentially catastrophic dangers of unreliable Lyme Disease tests. This is the story of Dr David Martz. Diagnosed with ALS (usually a death sentence within two years), he realized that his symptoms related as much to ALS as Lyme Disease. He was repeatedly tested for Lyme and found to be negative. After challenging the spirochete with antibiotics and using different tests that looked for DNA evidence instead of antibodies, the Lyme spirochete was finally found. He was treated and eventually made an almost complete recovery. The site also has an embedded video of Dr Martz’ story. http://invisibledisabilities.org/awardrecipients/2011awards/2011-research-award-david-martz-md/
The Borellia spirochete is very difficult to visualise using conventional microscopy. This article discusses the difficulties patients face in getting an accurate diagnosis using CDC testing guidelines, how the cystic form of Borellia allows the spirochete to survive until conditions are favourable again, and a new microscopy test that has been developed in Norway to visualse the spirochete when conventional testing has failed patients http://www.apollon.uio.no/english/articles/2013/2_borrelia.html
People with MS who feel that their history of insect bites (particularly ticks either domestically or overseas), and their list of symptoms indicate a possibility that Lyme Disease and/or co-infections are involved in their neurological distress, may consider contacting a Lyme Literate Medical Doctor for further advice, assessment and testing. Patients may need to insist on a comprehensive battery of tests (including co-infections), and be prepared to consider an antibiotic challenge and re-testing, including sending samples to overseas laboratories to get the best possible testing regime.
Even in confirmed cases, finding someone to comprehensively treat the late stage or chronic Lyme complex can be difficult, even in areas where Lyme is endemic, let alone places like Australia
As discussed earlier there appears to be a bizarre disbelief amongst some physicians that Lyme Disease symptoms can persist after a short course of antibiotics, even where Lyme has not been diagnosed until very late and considerable damage has been done. In America, some physicians who have continued to help Lyme Disease sufferers have been hounded out of business. This site notes the findings of the Connecticut Attorney General’s Office in relation to conflicts of interest on the panel of the Infectious Diseases Society of America's (IDSA) 2006 Lyme disease guidelines http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
Several states in America have now had to write specific legislation protecting doctors who treat chronic and late stage Lyme – summarized here http://archive.poughkeepsiejournal.com/assets/pdf/BK193589818.pdf
Given the situation in countries where Lyme disease is endemic, it is little wonder that the issue of Lyme Disease is little understood in Australia. Lyme disease was not even recognized in America until 1975 and the Lyme Spirochete was not isolated until seven years later in 1982. Many doctors and neurologists practicing today in Australia were therefore not trained about Lyme Disease, and anecdotally, even people who have travelled to Lyme endemic areas and returned with the illness have struggled to receive a correct diagnosis and ongoing treatment. Those who are aware of it may have a superficial knowledge that is detrimental to patient health. The diagnosis and treatment of chronic and late stage Lyme Disease is a subject which requires in depth knowledge, and is becoming a specialty in itself.
Controversy remains about an Australian Lyme–like illness and there is little or no support for those diagnosed with the disease in this country
Australians with clinically and serologically positive Lyme Disease have had to struggle for recognition. Where they have been able to get treatment, the lack of an accepted diagnostic and treatment protocol in Australia means that there is scant support through Medicare. Australians with Lyme Disease are essentially on their own. Just at a time when they are facing losses such as their capacity to work, they are struggling with huge medical bills, and sometimes dealing with official maltreatment from a mainstream medical community that does not accept that their illness exists. Many have been brought to personal and financial ruin.
Part of the problem seems to be one of semantics. Patients are suffering with a disease that is identical to Lyme. But since one of the species of Borellia that causes Lyme disease has not been isolated in Australian ticks to this point, officials deny that Lyme Disease exists in Australia.
To the patient with all of the symptoms of Lyme Disease, this hair splitting by medical professionals is beyond unhelpful and beyond comprehension. They expect better from science and scientists. They just need help, and if it will assist medical professionals to better understand their plight, then the disease needs to be renamed to refocus efforts until the Australian infective agent is isolated. It could be called ‘Australian Lyme Disease-like syndrome’ or ‘Australian tick-borne chronically fatiguing neurological syndrome’ or as one Australian Lyme sufferer put it ‘Pineapple disease’ or anything else, just so long as it is investigated and patients get the help they need.
In terms of direct medical assistance, Lyme patients need safe, appropriate treatments and rehabilitation for as long as it takes them to get better, and they need the infective agent or agents identified, and helpful-to-the-patient information disseminated by the health departments in each state and territory, so that doctors, hospital staff and patients are informed and know what to look for.
Every patient who becomes debilitated to the point of losing their job and needing full time care, may cost the Australian Government upwards of $100,000 a year to accommodate that level of disability. Spending a relatively small amount of money up front on proper diagnostic and treatment protocols will save a fortune and prevent untold misery in the long run.
Given the controversy over Lyme Disease and the lack of knowledge here, Australian doctors may well be unlikely to consider Lyme Disease as a differential diagnosis for MS even if a person has travelled to an area where Lyme Disease is endemic.
There does not appear to be a standard best – practice diagnostic protocol for MS in Australia. Each patient therefore depends on the individual knowledge and skill of their particular neurologist. With the official position being that Lyme Disease does not exist in Australia, and with late stage Lyme Disease manifesting itself years after a tick bite, then it would take a very informed and dedicated neurologist to consider the full spectrum of tick borne infections as a potential causal agent for the chronically fatiguing and neurologically dysfunctional symptoms they are seeing in someone with suspected MS. Even if a patient asked for Lyme and co-infections to be eliminated as a differential diagnosis, the patient would then probably run into the medical dead – end of the Elisa test.
It was not until August 2015 that a national guideline for overseas-acquired Lyme Disease was disseminated in Australia http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/Aust-guideline-diagnosis-overseas-acquired-Lyme-disease.pdf
The document essentially leaves patients with locally acquired Lyme–like syndrome with almost nowhere to go, since it frankly states that: “classical Lyme disease cannot be acquired in Australia”. It notes that: “An Australian Lyme disease-like syndrome (ALDLS) case description is not part of this document. The use of the term Australian Lyme disease-like syndrome is not a formal acknowledgment or designation of a new disease in Australia. If ALDLS can be better characterised as a chronic debilitating multi-organ illness affecting some Australians a separate ALDLS description can be written.” It provides little guidance for patients with an Australian Lyme–like illness, other than to state: “For patients who present with no history of overseas travel but with a tick bite and systemic symptoms, e.g., fever, contact with your Specialist Microbiologist to discuss test referral and with your Infectious Diseases Physician to discuss antimicrobial treatment of tick borne infections in the Australian context is advised.”
It does not discuss late stage symptoms for domestic sufferers when the tick bite is remote from clinical presentation. One wonders how the patient with Australian acquired Lyme–like disease will fare with their referral to local specialist microbiologists and infectious diseases physicians. Perhaps all the patient can do is go armed with the most up to date information they can acquire, quiz the specialists on their knowledge, and if not satisfied that they understand the complexities of the Lyme Disease Complex, seek out a Lyme Literate Medical Doctor who knows the subject inside out and appreciates the potential pitfalls in this Australian guideline.
It also does not discuss the possibility of other forms of transmission other than tick bite, such as other biting insects, sexual transmission or possibly even blood transfusion.
Given that even this very limited and restrictive guideline was not issued until late 2015, it can be clearly seen that it may take time to alert physicians to this disease as a unique entity, let alone as a differential diagnosis for MS – like symptoms, and then only in the context of international travel.
It can therefore be seen that anyone diagnosed with MS prior to this guideline being issued would be unlikely to have received the consideration of a differential diagnosis for Lyme disease in their diagnostic work – up.
A coherent effort is now beginning to be made to identify tick borne infections in Australia that can explain the Lyme-like diseases Australians are suffering
Through the efforts of groups that have been established to support those suffering with a Lyme–like illness in Australia, the Australian Federal Government is now starting to examine the issue in a coherent manner, but the efforts are very much in their infancy. A scoping study by professor John MacKenzie in 2013 set out certain principles for ongoing investigation, and the government response to that study outlined five areas for further research http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/health-response-scoping-study.pdf
Recent research by Peter Irwin of Murdoch University found: “Borrelia burgdorferi sensu lato was identified in German I. ricinus, but not in Australian I. holocyclus ticks. However, bacteria of medical significance were detected in I. holocyclus ticks, including a Borrelia relapsing fever group sp., Bartonella henselae, novel “Candidatus Neoehrlichia” spp., Clostridium histolyticum, Rickettsia spp., and Leptospira inadai.” http://www.parasitesandvectors.com/content/8/1/345/abstract
This research is promising, but although the government has outlined the research areas necessary to resolve the questions posed by Australian Lyme-like illness sufferers, there does not seem to be a coordinated effort to fund and complete the research that is needed. This leaves sufferers with considerable unmet needs.
The only people making any attempt to understand their situation, and to alleviate their suffering in practical ways are the few Lyme Literate Medical Doctors who are practicing in Australia.
This Karl McManus Foundation document discusses the similarities between classic Lyme Disease and Tick Borne Relapsing Fever, both of which are caused by Borrelia species, and notes that the term 'Lyme Disease' has had a confusing effect in Australia, suggesting the term Borreliosis should be used instead http://www.karlmcmanusfoundation.org.au/lyme-disease-borreliosis-relapsing-fever
This PubMed paper notes that Borellia species that cause relapsing fever are linked to neurological involvement as often as those species causing Lyme Disease http://www.ncbi.nlm.nih.gov/pubmed/9455525
However at this site http://www.oneperth.com.au/2011/09/16/dog-of-a-disease-vexes-people/ the article notes Peter Irwin’s advice that Lyme disease testing in Australia is inadequate, his search for Lyme in Australia, and his openness to searching for a causative agent that is not classic Lyme, but which is novel to Australia and is causing Lyme–like illness. Despite Australian and US testing protocols outlined above, the article notes: “If I don’t find evidence of infection in dogs, then it will suggest that these people who have been diagnosed with Lyme may have something else.”
"Dr Irwin said a lack of diagnostic services for Lyme in Australia meant the disease was nearly impossible to detect accurately. “It’s difficult to diagnose Lyme because there’s no single definitive blood test you can do,” he said. “There are loads of tests which give bits of an answer but nothing conclusive.”
Anyone with MS or neurological symptoms suggestive of MS who believe that their history of insect bites (particularly ticks either domestically or overseas), and their list of symptoms indicate a possibility that Lyme Disease and/or co-infections are involved in their neurological deficits, may raise that possibility with their medical professionals. Patients need to be aware of the pitfalls, and that their physician may not know as much about the Lyme Disease Complex as they do. If the patient is given tests they believe to be inferior, or they are not satisfied that their specialist understands the Lyme Complex completely, they can consider contacting a Lyme Literate Medical Doctor for further advice, assessment and testing of both Lyme Disease and its co-infections. Patients may need to insist on a comprehensive battery of tests (including co-infections), and be prepared to consider an antibiotic challenge and re-testing, including sending samples to overseas laboratories to get the best possible testing regime. This may be expensive, but even in the case of an ultimately negative result, it can be very important to that person to know they have done the best they possibly can for themselves in eliminating a devastating differential diagnosis which can destroy a person’s life, and ultimately kill them.
Links:
The person who made the connection between a collection of symptoms shared by residents in a particular area and a specific but unknown illness was not a scientist, but a mother. If she had not been able to tenaciously withstand the misdiagnoses, psychiatric slurs, fob offs and ridicule of the 'scientists' in the medical profession to whom she turned for help, then the discovery of Lyme Disease may never have occurred and immeasurable suffering, disability and medical mistreatment would have continued. Her story is summarised here http://www.blizzz.nl/index.php?sId=50029&lang=en
An excellent article in The Saturday Paper outlining the issues relating to Lyme Disease in Australia
https://www.thesaturdaypaper.com.au/2015/05/23/australia-ticked-lyme-disease/14323032001890
International Lyme and Associated Diseases Society http://www.ilads.org/
The International Lyme and Associated Diseases Society “Evidence-based guidelines for the management of Lyme Disease” http://www.ilads.org/lyme/ILADS_Guidelines.pdf
Some 700 peer reviewed journal articles providing evidence supporting chronically persistent Lyme Disease divided into several different sections. The first section is a general list of articles supporting the evidence for persistent infection. The other sections support persistence as it pertains to psychiatric symptoms, dementia, autism, and congenital transmission.
http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
A 2012 study showing that Borrelia burgdorferi forms antibiotic resistant biofilms, which may explain the phenomenon of chronic Lyme Disease
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0048277
A 2012 study casting doubt on the initial studies which have been used to deny the efficacy of extended antibiotic treatment for persistent Lyme symptoms
http://www.sciencedaily.com/releases/2012/08/120830135314.htm
A comprehensive backgrounder to Lyme Disease http://www.angelfire.com/biz/romarkaraoke/lymeart.html
A wide – ranging discussion of Lyme Disease and co-infections by an American doctor treating Lyme with natural therapies http://www.newswithviews.com/Howenstine/james26.htm
A document linking Amytrophic Lateral Sclerosis (ALS or Motor Neurone Disease) to Lyme Disease http://www.als-cure.com/ALS.pdf
An article noting the discovery of Borrelia spirochetes in ticks preserved in 15 to 20 million year-old fossilised amber. This post notes that Lyme disease was not even recognised until 1975, and that many doctors are still ignorant of tick borne infections. It also mentions that the oldest documented case of Lyme Disease is the Tyrolean iceman. Nicknamed 'Otzi' the 5,300-year-old mummy was found in a glacier in the Italian Alps in 1991. It's ironic that Lyme spirochetes can be isolated from prehistoric ticks and ancient corpses, but are seemingly very difficult to identify in living humans today http://oregonstate.edu/ua/ncs/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race
This page relates to a study that demonstrates the neurodegeneration and demyelination associated with neurological Lyme symptoms
http://www.sciencedaily.com/releases/2015/04/150416084338.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Flyme_disease+%28Lyme+Disease+News+--+ScienceDaily%29
This page notes that Lyme Spirochetes do not use iron, and so evade the 'iron starvation' method that the immune system uses to combat infection
http://www.sciencedaily.com/releases/2013/03/130321205712.htm
This page explains that the Lyme Spirochete 'hides out' in lymph nodes, triggering an immune response, but not one that is strong enough to overcome the infection
http://www.sciencedaily.com/releases/2011/06/110616193911.htm
This page describes a new scientific study which has found that Lyme spirochetes form 'persister cells' which may explain why the bacterium so often proves to be resistant to antibiotic treatment
http://www.sciencedaily.com/releases/2015/06/150601112236.htm
This page highlights the difficulties of diagnosing Lyme. It describes a teenaged patient who presented with stroke symptoms who was actually suffering from Lyme neuroborreliosis. Interestingly the patient had no remembered history of tick bite
http://www.sciencedaily.com/releases/2015/03/150302182428.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Flyme_disease+%28Lyme+Disease+News+--+ScienceDaily%29
A Lyme literate doctor who is finding MS patients with Lyme and co-infections and treating them successfully http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html
Testing:
Interpreting the bands on Western Blot tests http://www.anapsid.org/lyme/wb.html
Igenex – a specialist Lyme Disease (and co-infections) testing lab in America http://www.igenex.com/Website/
Australian Biologics, an Australian lab now offering Lyme Disease testing http://www.australianbiologics.com.au/
CDC 2011 case definition for Lyme Disease noting that the two tier testing regime is for surveillance purposes and is not to be used in clinical diagnosis https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2011/
Australian Lyme Resources:
The Royal College of Pathologists of Australasia position statement on "Diagnostic Laboratory testing for Borreliosis (‘Lyme Disease’ or similar syndromes) in Australia and New Zealand" http://www.rcpa.edu.au/Library/College-Policies/Position-Statements/Diagnostic-Laboratory-testing-for-Borreliosis-Lyme
" Lyme disease in Australia: Denial and evidence" Well reasoned rebuttal of position statements like the RCPA statement on Lyme (which seems to be that it isn't in Australia, so positive tests are not to be relied on, and if there is an indigenous strain, we don't know what we are looking for so we can't test for it). This document explains essentially that you can only deny the existence of Lyme Disease in Australia if you ignore the scientific evidence that has identified Borrelia species in humans, animals and ticks in Australia, and if you accept one study that purported not to find Borrelia, but which did limited PCR testing, also tested unfed ticks, and which did not test for a multiplicity of Borrelia strains, and failed to test for European strains of Borrelia http://www.lymebook.com/aus_6.pdf
Infectious diseases specialist Dr Bernie Hudson's description of Australian tick borne diseases, noting the first description of Lyme Disease in Australia in 1982
https://sites.google.com/site/ticktransmitteddiseasesaust/
It's only possible to deny there is Lyme Disease in Australia if the studies which have identified Borrelia in our ticks are ignored. Here is a link to a 1991 study that asserts that Borrelia species were indeed found in Australian ticks http://www.lymedisease.org.au/wp-content/uploads/2010/11/Detecting-the-cuase-of-Lyme-disease-in-Australia-Med-Jnl-of-Australia-1991.pdf
“Lyme Disease in Australia” a book by Nicola McFadzean, an Australian Naturopathic Doctor, based in America http://restormedicine.com/lyme-disease-in-australia/
The Karl McManus Foundation website http://www.karlmcmanusfoundation.org.au/
Lyme Disease Association of Australia http://www.lymedisease.org.au/
Lyme Disease Association of Australia submission to the 2014 Australian Government scoping study into Lyme Disease http://www.lymedisease.org.au/wp-content/uploads/2010/11/20140129LDAAScopingStudyResponse.pdf
A podcast of the Lyme Disease roundtable held in Sydney as part of the Australian House of Representatives Standing Committee on Health (Chronic disease prevention and management in primary health care). https://soundcloud.com/lymediseaseau/australian-hor-standing-committee-on-health-lyme-disease-roundtable-sydney-18915
Beyond the Bandaid – a site which examines the underlying causes of chronically fatiguing, neurodegenerative and neurobehavioural diseases http://beyondthebandaid.com.au/
Dr Mayne is a Lyme Literate Medical Doctor (now retired) who has written several scientific papers on the emergence of Lyme Disease in Australia http://www.drmayne.com/research.htm
‘A counter-argument to the Australian Government’s denial of Lyme Disease’ http://www.lymeaustralia.com/uploads/8/0/2/7/8027024/lyme_disease_a_counter_argument_to_the_australian_governments_denial.pdf
A document has been discovered dating to 1990 and issued by the QLD Department of Health, warning of the emergence of Lyme Disease https://www.questia.com/newspaper/1G1-367501658/fears-rise-as-disease-risk-grows
Catalyst video article on 'Toxic Ticks' exploring what might be making people ill when bitten by ticks in Australia http://www.abc.net.au/catalyst/stories/4494187.htm
A new Borrelia species has been detected in Echidna ticks in Australia. It is not know if it causes illness in humans as yet
http://www.lymedisease.org.au/wp-content/uploads/2016/06/Loh-2016-Borrelia-Echidna-ticks.pdf?platform=hootsuite
Australian Government Lyme Disease resources:
Australian Federal Government’s website which is providing updates on the department’s work and relevant research findings on Australian Lyme disease-like syndrome http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
Department of Health’s response to prof. John MacKenzie’s 2013 scoping study into Lyme Disease http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/health-response-scoping-study.pdf
Australian Government’s consolidated list of research projects produced by the chief medical officer’s scoping study of 2013 http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/consolidated-research-projects.pdf
Podcasts of the public hearings of the Australian Senate enquiry into an emerging Lyme-like illness in Australia https://soundcloud.com/lymediseaseau/
Interim report of the Australian Senate enquiry into an emerging Lyme-like illness in Australia http://www.lymedisease.org.au/wp-content/uploads/2016/05/20160504-Senate-Inquiry-Interim-Report.pdf?platform=hootsuite
Some Australian Lyme patient stories:
Australian man receives worker's compensation for Lyme-like illness from tick bites in the workplace https://www.youtube.com/watch?v=ovfZHMFxNks
Hunter woman's recovery from Lyme Disease after overseas treatment http://www.theherald.com.au/story/3747110/hunter-woman-triumphs-over-lyme-disease/
Sam Stosur’s battle with Lyme Disease http://www.samstosur.com/news/my-battle-with-lyme-disease/
Australian woman who has never left the country tests positive to Lyme disease
http://www.gladstoneobserver.com.au/news/disease-claims-quality-of-life/2035687/
Emerging tick borne infections:
Brazil: http://www.scielo.br/pdf/ramb/v56n3/en_v56n3a25.pdf
China: http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(15)00177-2/abstract
Why people with chronic or late stage Lyme may have immune systems that do not react the way the testing regime expects – including seronegative Lyme, and that an IgM response may persist long after infection and treatment:
http://www.differencebetween.net/science/health/difference-between-igm-and-igg/
http://lymemd.blogspot.com.au/2014/04/the-igm-question-is-it-chronic-lyme.html
http://lymemd.blogspot.com.au/2009/12/igm-question-is-it-chronic-lyme-disease.html
http://lymemd.blogspot.com.au/2008/09/all-i-got-was-41band.html
https://lymedout.wordpress.com/2012/04/07/i-dont-think-you-have-lyme-because-your-results-says-positive-igm-and-not-igg/
http://www.nejm.org/doi/full/10.1056/NEJM198812013192203
http://www.ncbi.nlm.nih.gov/pubmed/12189466/
http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=3757
http://www.ncbi.nlm.nih.gov/pubmed/9007597
http://www.karlmcmanusfoundation.org.au/testing
http://www.sciencedaily.com/releases/2014/04/140416171951.htm
http://cid.oxfordjournals.org/content/33/6/780.long
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC423723/pdf/jcinvest00109-0086.pdf
http://www.personalconsult.com/articles/lymeantibioticfailure.html
Australian doctors with an interest in Lyme Disease:
Dr Peter Dobie (Sydney) http://pymblegrove.com/practitioners/dr-peter-dobie
Dr Richard Schloeffel (Sydney) http://emerge.org.au/dr-richard-schloeffel-chronic-fatigue-syndrome-diagnosis-treatment/#.VjV3NDahdzk
http://pymblegrove.com/practitioners/dr-richard-schloeffel
You tube video by Beyond The Bandaid with Dr Richard Schloeffel https://www.youtube.com/watch?v=Vf9TDl5uWqI
Dr Gull Herzberg (Bellingen) http://www.drgull.com.au/
Dr Trevor Cheney (Bellingen) http://www.mncdgp.org.au/practice/bellingen_healing_centre
Dr Hugh Derham (Perth) http://www.healthquest.com.au/clinic.html
New Lyme disease spirochete discovered in the USA
Even though European Lyme disease is know to be caused by several Borrelia species, previously only Borrelia burgdorferi was thought to cause 'classic' Lyme Disease in the USA.
Now the discovery of the previously unknown Borrelia mayonii proves that Lyme symptoms can be caused by other Borrelia. Will this discovery prove useful to Australian sufferers of a Lyme - like illness associated with tick bite in a country where the government denies 'classic Lyme disease' can be acquired?
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(15)00464-8/abstract
http://www.sbs.com.au/news/article/2016/02/09/new-lyme-disease-bacteria-found
https://www.facebook.com/lymestats/photos/a.1555500118055859.1073741829.1555493588056512/1675943579344845/?type=3
Some authorities claim that only Borrelia burgdorferi causes Lyme Disease. This Lancet article relating to the newly discovered Borrelia Mayonii notes that multiple genospecies cause Lyme
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(16)30053-6/fulltext?elsca1=etoc
The Australian Lyme controversy
Several authorities have now agreed that there is something in Australian ticks that is making people very sick. There has been no conclusive evidence to date (2016) that it is Borrelia. Even if Borrelia were found to be endemic to Australia, the Australian medical profession is largely reluctant to accept that Lyme Disease can become a long-term, chronic illness. This is true also in countries where Lyme Disease is endemic. One UK scientific publication suggests that the solution to medical denial of the severe ongoing illness that tick bite victims are suffering is to use an alternative name, "chronic arthropod-borne neuropathy (CAN)", and to create a separate case definition for this condition. The author accepts that although the patients may be seronegative for Lyme, they are seriously disabled following tick bite. Something similar could occur in Australia so that tick bite victims with severely disabling, chronic illness following tick bite can receive mainstream treatment and care http://www.ncbi.nlm.nih.gov/pubmed/24814098
In America there is a tick borne disease that is similar to Lyme Disease, but the causal agent is has not been discovered yet. Crucially, this has not stopped the Americans naming the illness, or warning patients and physicians about it. The disease has been named southern tick-associated rash illness (STARI).
In Australia, people are becoming chronically and progressively disabled following tick bite, with multiple neurological, neuromuscular and arthritic symptoms, sometimes months or years later, yet although the authorities now admit that there is 'something' in our ticks that is making people very sick, no serious effort has been made to name the disease, create a case definition, or alert the community or medical profession of the necessity for early diagnosis and treatment. If the Americans can name and frame STARI when the causal agent is not known, Australia should be doing the same too. The word "Australian" should be used in the title of this illness to give ownership to the Australian medical profession http://www.cdc.gov/stari/index.html
Chlamydophila pnumoniae (Cpn)
Lyme Disease is primarily thought of as a tick borne infection although some authorities also believe it is carried by other biting insects and transferred via sexual contact or in the womb. It is endemic to many parts of the world, but its existence in Australia has not been proven, although many Australians who have not left the country have tested positive for the causative agent and/or the co-infections associated with it and are clearly suffering from a Lyme–like illness.
Caused by the spirochete Borrelia burgdorferi, it can attack the skin, joints, eyes, heart and nervous system, and just like MS may manifest as a neuropsychiatric and/or neuromuscular condition. Just like MS, many patients with undiagnosed Lyme are referred to psychiatrists with the assumption that the multiple symptoms they are experiencing are ‘all in their head’.
The Borellia species known to cause classic Lyme internationally has not been isolated in Australian ticks. However, Australian ticks are already known to cause severe allergic reactions, neurotoxin paralysis, mammalian meat allergy and carry infections such as typhus. Many Australians are sick with a disease that follows a tick bite, and presents exactly like Lyme Disease. A more coherent effort is now finally being made to isolate the infectious agent in Australian ticks that is causing the domestic version of a Lyme–like illness http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
Lyme disease has been called the great imitator and in some areas where Lyme is endemic it is a standard differential diagnosis for MS. In progressive MS, the spinal cord is more often involved than the brain, and this document notes the difficulty of analysing spinal cord lesions as regards to differential diagnosis, and specifically notes that Lyme Disease (neuroborelliosis) is a differential diagnosis http://www.jneurovirol.com/pdf/6(s2)/s130-s133.pdf
It is entirely possible that there is a domestic Lyme–like illness in Australia, or that Australian MS patients could have been infected in a country where Lyme is well known.
It may therefore be wise for those with MS–like symptoms awaiting a diagnosis, or newly diagnosed MS patients to have their Lyme disease status checked thoroughly, as early in the disease course as possible.
This may be especially important where a person has an obviously progressive course of MS that is typical of chronic or late stage Lyme, or where the MS and Lyme symptoms overlap. This may be particularly indicated where there is evidence of Lyme–like symptoms that are not generally thought of as being MS related, such as gastrointestinal problems, sensitivities to light, noise or odours, tinnitus, bruising easily, mottled or blotchy skin, cold hands and feet, chills and/or shakes, flu-like symptoms, low body temperature, painful lymph nodes, night sweats, rapid heartbeat and/or dizziness on standing, often feeling hot or cold irrespective of actual ambient temperature and body temperature, cardiac irregularities, air hunger, muscle twitches, joint or arthritic pain, migratory joint and/or muscle pain, floaters in the eyes, and so on.
The master list of Lyme Disease symptoms is a bewilderingly long list and can be found here http://www.anapsid.org/lyme/masterlymesymptoms.pdf
Not everyone with Lyme Disease will manifest all of those symptoms of course, but they could potentially manifest any of them. Reading through that master list a person with MS can readily identify if there are other symptoms that relate more to Lyme than MS, or Lyme Disease as well as MS. If there is a history of tick bites with or without the classic bull’s eye rash that may account for these symptoms, then consulting a Lyme literate medical doctor (LLMD) may be a wise precaution.
If a person has a diagnosis of MS, but also has a Lyme Disease infection, then the prescription of steroids, or one of the immune modulating or immune suppressing drugs that are routinely prescribed in MS are perhaps not indicated, because they may well help the Lyme Disease to gain the upper hand, by suppressing the immune response to this infection.
The common co-infections associated with Lyme Disease include Babesia, Bartonella, Ehrlichia, Anaplasma, Rickettsia, Mycoplasama and Chlamydophila pnumoniae. This Lyme Disease website lists some of these co-infections, and some of the symptoms associated with them http://whatislyme.com/co-infections/
It is important to note that co-infections may complicate recovery from Lyme disease, or add to the baffling array of symptoms with which the patient presents. Severe neurological symptoms in particular, or resistance to treatment may well indicate the presence of one or more co-infections. It is possible that someone testing negatively for Lyme spirochetes will have one or more of these co-infections from the tick bite, so a negative Lyme test does not rule out another tick borne infection.
In a nutshell:
- Lyme disease can cause all of the symptoms of MS, including lesions seen on MRI
- If diagnosed and treated early, a quick and full recovery can be made
- In some susceptible individuals the treatment is not successful and chronic Lyme (or post treatment Lyme) develops with some patients progressing to the point of becoming wheelchair bound or bed bound
- If not diagnosed and treated early then severe disability can develop, just as in chronic (post -treatment Lyme) but since it has gone undiagnosed and untreated, it is referred to as late stage Lyme
- Like MS, Lyme diagnosis is meant to be a clinical diagnosis backed up by laboratory tests, but in practice the laboratory tests may be held to be the gold standard for diagnosis
- Laboratory tests for Lyme Disease are regarded as being notoriously inaccurate and fraught with uncertainty for many different reasons and anecdotally, even when positive, some physicians can be reluctant to accept the test result
- Even in confirmed cases, finding someone to comprehensively treat the late stage or chronic Lyme complex can be difficult, even in areas where Lyme is endemic, let alone places like Australia
- Controversy remains about an Australian Lyme – like illness and there is little or no support for those diagnosed with the disease in this country
- Given the controversy over Lyme Disease and the lack of knowledge here, Australian doctors may well be unlikely to consider Lyme Disease as a differential diagnosis for MS even if a person has travelled to an area where Lyme Disease is endemic.
- A coherent effort is now beginning to be made to identify tick borne infections in Australia that can explain the Lyme-like diseases Australians are suffering
More detail:
Lyme disease can cause all of the symptoms of MS, including lesions seen on MRI
Lyme Disease has been called the great imitator, since it can present as almost any illness. In terms of overlap with MS symptomology, the person with Lyme Disease can develop intolerance to heat or cold, extreme fatigue after minimal exertion, severe weakness of limbs, paralysis, muscle aches and pain, stiffness, paresthesia’s (numbness, tingling, crawling, itching sensations) in face, head, torso or extremities, stabbing or shooting pains, electric shock – like pains, cognitive decline, tremors, impaired coordination, impaired gait, loss of balance when standing with eyes closed, general balance issues, slowed and/or slurred speech, word-finding difficulty, using the wrong word, constipation, incontinence, blurred vision, optic neuritis, anxiety, depression, sensory changes on the skin and so on.
This site lists some of the literature which examines the similarities between Lyme Disease and MS symptoms http://lymeinfo.net/multiplesclerosis.html
These neurological manifestations of Lyme Disease are known as neuroborreliosis. This International Neurourology Journal article notes some of the late stage Lyme Disease symptoms and discusses the symptom of neurogenic bladder, which is common to both Lyme Disease and Multiple Sclerosis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547183/
If diagnosed and treated early, a quick and full recovery can be made
The American Centers for Disease Control and Prevention (CDC) notes at http://www.cdc.gov/lyme/treatment/index.html that “Patients treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. Antibiotics commonly used for oral treatment include doxycycline, amoxicillin, or cefuroxime axetil. Patients with certain neurological or cardiac forms of illness may require intravenous treatment with drugs such as ceftriaxone or penicillin.” This document notes that recovery ‘usually’ takes place in ‘early’ stages of Lyme only and also notes the existence of ‘chronic Lyme’ which it refers to as ‘post treatment Lyme Disease syndrome’. It also notes that serious neurological and cardiac Lyme symptoms exist, and that they may be resistant to oral antibiotics. It does not refer to late stage Lyme Disease, where the disease is not diagnosed until it is deeply entrenched in the body, and is causing multiple neuropsychiatric issues.
In some susceptible individuals the treatment is not successful and chronic Lyme (or post treatment Lyme) develops with some patients progressing to the point of becoming wheelchair bound or bed bound
Prompt treatment of Lyme Disease can result in complete recovery, or only partial recovery. However, in certain individuals, symptoms can persist or progressively worsen. This is unsurprising because everybody is different, and the simplistic notion that a short course of antibiotics can cure everyone ignores the incredible resilience of the Lyme spirochete, the duration of its lifecycle and the time needed to successfully kill it’s various forms, its capacity to evade the immune system using biological strategies or reinfection from immune privileged areas of the body, the existence of one or more co-infections, the resilience and immune status of the infected person, or the possibility of repeated re-infection.
If not diagnosed and treated early then severe disability can develop (just as in chronic or post - treatment Lyme) but since it has gone undiagnosed and untreated for so long, it is usually referred to as late stage Lyme
Obtaining a diagnosis of Lyme Disease can be difficult even in areas where the disease is endemic. This may be for a variety of reasons including the ignorance or bias of physicians (you cannot diagnose what you don’t know about or don’t believe in), the fact that Lyme Disease can present with symptoms that look like other diseases, and the severe variability of individual immune responses and the unreliability of tests, among others.
By the time neuroborreliosis becomes evident to a physician, or a patient insists on a thorough testing regime and/or a referral to a Lyme literate MD, the disease may be thoroughly disseminated and entrenched and the patient may be suffering severe neurological disability which is manifesting both physically and mentally.
It is obvious that treating a Lyme infection of many year’s (perhaps decade’s) duration is an entirely different proposition to treating an otherwise healthy person who presents to their doctor with a recent tick bite and a bull’s eye rash. However, not everyone with Lyme Disease will get the classic rash, or even remember a tick bite. Some ticks that transmit Lyme are almost too small to be seen, and are easily overlooked on the skin. Others may be bitten in an area that is difficult to examine (like the hair on the head), or will be bitten by another biting insect that does not attach to the host. In Australia, other insects thought to carry Lyme Disease are stick-fast fleas and March Flies.
Late stage Lyme disease is also known as stage three or tertiary Lyme Disease. This Medscape article concisely but comprehensively lists the three stages of Lyme Disease http://emedicine.medscape.com/article/330178-clinical
It is extraordinary that there is any controversy surrounding late stage Lyme. Imagine a disease that has been allowed to run rampant in a person’s body for years or even decades, damaging multiple organs in the process, and then imagine the expectation that the infection will be eradicated in a matter of weeks, and that the severe neurological damage a person has experienced will repair itself without further treatment or rehabilitation. This is extraordinary. The treatment of tuberculosis can take more than two years to treat. This CDC site notes that treatment of Q fever responds best to early treatment (3 days), that, chronic Q fever exists, and that chronic Q fever can take up to four years to treat http://www.bt.cdc.gov/agent/qfever/clinicians/treatment.asp yet with Lyme disease, patients who present with persistent Lyme symptoms are often regarded with skepticism. Why?
This Karl McManus foundation page explains why the lifecycle of Borrelia, indicates why antibiotic treatment over a period as long as three years may be necessary http://www.karlmcmanusfoundation.org.au/what-is-lyme-disease
Late stage Lyme is simply the outcome of a disease that has gone untreated for a long period of time, progressively damaging the body, and which can present exactly like multiple sclerosis.
Like MS, Lyme diagnosis is meant to be a clinical diagnosis backed up by laboratory tests, but in practice the laboratory tests may be held to be the gold standard for diagnosis
The International Lyme and Associated Diseases Society notes in their document “Evidence-based guidelines for the management of Lyme Disease”; “Lyme disease is a clinical diagnosis and tests should be used to support rather than supersede the physician’s judgment.” http://www.ilads.org/lyme/ILADS_Guidelines.pdf
Anecdotally however, many doctors (if they look for Lyme at all) appear reluctant to treat unless laboratory tests are conclusive. In Australia, there is anecdotal evidence of positive Lyme tests being rejected as impossible. This link notes one of these cases, an anecdote from a Western Australian doctor who has treated many cases of Lyme Disease. The link also has an embedded podcast which discusses Australian Lyme–like illness http://blogs.abc.net.au/nt/2014/03/thousands-of-australians-have-lyme-disease-and-dont-know-it.html?program=darwin_afternoons
So, as a result of the notorious unreliability of the tests, the onerous testing regime required to return a positive result, plus physician skepticism, a patient can be in the unenviable position of being untreated if the test(s) are negative, and untreated if the tests are positive.
Laboratory tests for Lyme Disease are regarded as being notoriously inaccurate and fraught with uncertainty for many different reasons and anecdotally, even when positive, some physicians can be reluctant to accept the test result
The gold standard for Lyme Disease testing is a ‘two tier’ test. This testing regime appears to have been outlined by the US CDC, and adopted by many countries. On its web page, the CDC notes that “Laboratory testing can be an important aid in the diagnosis of Lyme disease… patients who have had Lyme disease for longer than 4-6 weeks, especially those with later stages of illness involving the brain or the joints, will almost always test positive. A patient who has been ill for months or years and has a negative test almost certainly does not have Lyme disease as the cause of their symptoms.” “Can be an important aid… will almost always… almost certainly…” http://www.cdc.gov/lyme/diagnosistreatment/LabTest/
On its page relating to the two tier test, the CDC has this to say; “CDC currently recommends a two-step process when testing blood for evidence of antibodies against the Lyme disease bacteria. Both steps can be done using the same blood sample. The first step uses a testing procedure called “EIA” (enzyme immunoassay) or rarely, an “IFA” (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate (sometimes called "equivocal"), the second step should be performed. The second step uses a test called an immunoblot test, commonly, a “Western blot” test. Results are considered positive only if the EIA/IFA and the immunoblot are both positive. The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.”
So, if the first test is negative, it is the end of the road for the patient, and if they have the disease it will remain untreated and may rampage through their body, destroying their life. If the first test is positive, the CDC does not accept it and recommends a second test. So, if the first test is positive but the second test is negative, it is also the end of the road for the patient, and if they have the disease it will remain untreated and may rampage through their body, destroying their life. Only if both of these tests are positive does the CDC accept that a person is infected. However, the CDC advises that “if the patient has had symptoms for more than 30 days, the IgG Western Blot is performed. The IgM should not be used if the patient has been ill for more than 30 days.”
http://www.cdc.gov/lyme/diagnosistesting/LabTest/TwoStep/index.html
If a physician conducts both of these tests, the CDC goes on to state that “If you’ve been ill for longer than 4-6 weeks and the IgG immunoblot test is negative, it is unlikely that you have Lyme disease, even if the IgM immunoblot is positive.” ‘Unlikely!’ So, not only must the first test be positive, but the CDC wants both the IgM and IgG Western Blot test to be positive too. So irrespective of your actual clinical disease status, unless you fulfil all of these criteria, a doctor who is aware of this disease and is checking for you, may well rule out Lyme and must necessarily look for some other disease to label as the cause of your symptoms. If that label is MS, the patient will be doomed to ‘live’ with an untreated infection that will most likely progressively destroy their life. http://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/westernblot/index.html
The CDC has set an almost impossible standard for positive laboratory testing for Lyme Disease, which is testing that it first acknowledges is only “an important aid in the diagnosis of Lyme disease.”
This French video (with sub-titles) sums up very succinctly and directly the potentially catastrophic problems created for patients by this two tier testing regime.
https://www.youtube.com/watch?v=ABji9ebeKf0&feature=youtu.be
The report implies that the young person in this video was only eventually diagnosed because there was photographic evidence of the classic bull’s eye rash of Lyme disease. Bizarrely, a history of tick bite (in a Lyme endemic area) followed by Bull’s eye rash is sufficient for a diagnosis of Lyme disease and a patient can be treated without further testing. However, if the rash is overlooked for one reason or another, and the patient fails the first tier Eliza test, then according to the CDC testing regime, they do not have Lyme Disease and cannot be treated. If the person in the video did not have a photo of the rash, who knows what the ultimate outcome of an untreated Lyme infection would have been?
This also illustrates the fact that the problems seen in chronic or late stage Lyme, seem to relate to an aberrant immune response in the host, which in itself is likely to cause testing complications. Every body is different, so why is there an assumption that everyone will respond exactly the same to a test, or to a standard treatment regime? The tests which look for antibodies assume that the patient can produce these antibodies at the right time, and that they do not have a compromised immune system for any reason, and that the spirochete itself has not modulated the immune system to protect itself.
The French video also illustrates the lack of physician knowledge (even in countries where Lyme is endemic), and possible physician prejudice or laziness, seen here as an assumption that psychiatric illness was the cause of this person’s paralysis.
This Australian website discusses the problems with current tests http://www.karlmcmanusfoundation.org.au/testing and here the same website discusses the problems with Australian laboratory testing in particular http://www.karlmcmanusfoundation.org.au/mkf-reply-to-rcpa
This NSW (Australian) Government websites provides advice to clinicians in relation to the testing of patients for Lyme along US CDC lines, and is indicative of the difficulties patients face http://www.health.nsw.gov.au/Infectious/factsheets/Documents/lyme-disease-testing-advice.pdf
This site chillingly outlines the potentially catastrophic dangers of unreliable Lyme Disease tests. This is the story of Dr David Martz. Diagnosed with ALS (usually a death sentence within two years), he realized that his symptoms related as much to ALS as Lyme Disease. He was repeatedly tested for Lyme and found to be negative. After challenging the spirochete with antibiotics and using different tests that looked for DNA evidence instead of antibodies, the Lyme spirochete was finally found. He was treated and eventually made an almost complete recovery. The site also has an embedded video of Dr Martz’ story. http://invisibledisabilities.org/awardrecipients/2011awards/2011-research-award-david-martz-md/
The Borellia spirochete is very difficult to visualise using conventional microscopy. This article discusses the difficulties patients face in getting an accurate diagnosis using CDC testing guidelines, how the cystic form of Borellia allows the spirochete to survive until conditions are favourable again, and a new microscopy test that has been developed in Norway to visualse the spirochete when conventional testing has failed patients http://www.apollon.uio.no/english/articles/2013/2_borrelia.html
People with MS who feel that their history of insect bites (particularly ticks either domestically or overseas), and their list of symptoms indicate a possibility that Lyme Disease and/or co-infections are involved in their neurological distress, may consider contacting a Lyme Literate Medical Doctor for further advice, assessment and testing. Patients may need to insist on a comprehensive battery of tests (including co-infections), and be prepared to consider an antibiotic challenge and re-testing, including sending samples to overseas laboratories to get the best possible testing regime.
Even in confirmed cases, finding someone to comprehensively treat the late stage or chronic Lyme complex can be difficult, even in areas where Lyme is endemic, let alone places like Australia
As discussed earlier there appears to be a bizarre disbelief amongst some physicians that Lyme Disease symptoms can persist after a short course of antibiotics, even where Lyme has not been diagnosed until very late and considerable damage has been done. In America, some physicians who have continued to help Lyme Disease sufferers have been hounded out of business. This site notes the findings of the Connecticut Attorney General’s Office in relation to conflicts of interest on the panel of the Infectious Diseases Society of America's (IDSA) 2006 Lyme disease guidelines http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
Several states in America have now had to write specific legislation protecting doctors who treat chronic and late stage Lyme – summarized here http://archive.poughkeepsiejournal.com/assets/pdf/BK193589818.pdf
Given the situation in countries where Lyme disease is endemic, it is little wonder that the issue of Lyme Disease is little understood in Australia. Lyme disease was not even recognized in America until 1975 and the Lyme Spirochete was not isolated until seven years later in 1982. Many doctors and neurologists practicing today in Australia were therefore not trained about Lyme Disease, and anecdotally, even people who have travelled to Lyme endemic areas and returned with the illness have struggled to receive a correct diagnosis and ongoing treatment. Those who are aware of it may have a superficial knowledge that is detrimental to patient health. The diagnosis and treatment of chronic and late stage Lyme Disease is a subject which requires in depth knowledge, and is becoming a specialty in itself.
Controversy remains about an Australian Lyme–like illness and there is little or no support for those diagnosed with the disease in this country
Australians with clinically and serologically positive Lyme Disease have had to struggle for recognition. Where they have been able to get treatment, the lack of an accepted diagnostic and treatment protocol in Australia means that there is scant support through Medicare. Australians with Lyme Disease are essentially on their own. Just at a time when they are facing losses such as their capacity to work, they are struggling with huge medical bills, and sometimes dealing with official maltreatment from a mainstream medical community that does not accept that their illness exists. Many have been brought to personal and financial ruin.
Part of the problem seems to be one of semantics. Patients are suffering with a disease that is identical to Lyme. But since one of the species of Borellia that causes Lyme disease has not been isolated in Australian ticks to this point, officials deny that Lyme Disease exists in Australia.
To the patient with all of the symptoms of Lyme Disease, this hair splitting by medical professionals is beyond unhelpful and beyond comprehension. They expect better from science and scientists. They just need help, and if it will assist medical professionals to better understand their plight, then the disease needs to be renamed to refocus efforts until the Australian infective agent is isolated. It could be called ‘Australian Lyme Disease-like syndrome’ or ‘Australian tick-borne chronically fatiguing neurological syndrome’ or as one Australian Lyme sufferer put it ‘Pineapple disease’ or anything else, just so long as it is investigated and patients get the help they need.
In terms of direct medical assistance, Lyme patients need safe, appropriate treatments and rehabilitation for as long as it takes them to get better, and they need the infective agent or agents identified, and helpful-to-the-patient information disseminated by the health departments in each state and territory, so that doctors, hospital staff and patients are informed and know what to look for.
Every patient who becomes debilitated to the point of losing their job and needing full time care, may cost the Australian Government upwards of $100,000 a year to accommodate that level of disability. Spending a relatively small amount of money up front on proper diagnostic and treatment protocols will save a fortune and prevent untold misery in the long run.
Given the controversy over Lyme Disease and the lack of knowledge here, Australian doctors may well be unlikely to consider Lyme Disease as a differential diagnosis for MS even if a person has travelled to an area where Lyme Disease is endemic.
There does not appear to be a standard best – practice diagnostic protocol for MS in Australia. Each patient therefore depends on the individual knowledge and skill of their particular neurologist. With the official position being that Lyme Disease does not exist in Australia, and with late stage Lyme Disease manifesting itself years after a tick bite, then it would take a very informed and dedicated neurologist to consider the full spectrum of tick borne infections as a potential causal agent for the chronically fatiguing and neurologically dysfunctional symptoms they are seeing in someone with suspected MS. Even if a patient asked for Lyme and co-infections to be eliminated as a differential diagnosis, the patient would then probably run into the medical dead – end of the Elisa test.
It was not until August 2015 that a national guideline for overseas-acquired Lyme Disease was disseminated in Australia http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/Aust-guideline-diagnosis-overseas-acquired-Lyme-disease.pdf
The document essentially leaves patients with locally acquired Lyme–like syndrome with almost nowhere to go, since it frankly states that: “classical Lyme disease cannot be acquired in Australia”. It notes that: “An Australian Lyme disease-like syndrome (ALDLS) case description is not part of this document. The use of the term Australian Lyme disease-like syndrome is not a formal acknowledgment or designation of a new disease in Australia. If ALDLS can be better characterised as a chronic debilitating multi-organ illness affecting some Australians a separate ALDLS description can be written.” It provides little guidance for patients with an Australian Lyme–like illness, other than to state: “For patients who present with no history of overseas travel but with a tick bite and systemic symptoms, e.g., fever, contact with your Specialist Microbiologist to discuss test referral and with your Infectious Diseases Physician to discuss antimicrobial treatment of tick borne infections in the Australian context is advised.”
It does not discuss late stage symptoms for domestic sufferers when the tick bite is remote from clinical presentation. One wonders how the patient with Australian acquired Lyme–like disease will fare with their referral to local specialist microbiologists and infectious diseases physicians. Perhaps all the patient can do is go armed with the most up to date information they can acquire, quiz the specialists on their knowledge, and if not satisfied that they understand the complexities of the Lyme Disease Complex, seek out a Lyme Literate Medical Doctor who knows the subject inside out and appreciates the potential pitfalls in this Australian guideline.
It also does not discuss the possibility of other forms of transmission other than tick bite, such as other biting insects, sexual transmission or possibly even blood transfusion.
Given that even this very limited and restrictive guideline was not issued until late 2015, it can be clearly seen that it may take time to alert physicians to this disease as a unique entity, let alone as a differential diagnosis for MS – like symptoms, and then only in the context of international travel.
It can therefore be seen that anyone diagnosed with MS prior to this guideline being issued would be unlikely to have received the consideration of a differential diagnosis for Lyme disease in their diagnostic work – up.
A coherent effort is now beginning to be made to identify tick borne infections in Australia that can explain the Lyme-like diseases Australians are suffering
Through the efforts of groups that have been established to support those suffering with a Lyme–like illness in Australia, the Australian Federal Government is now starting to examine the issue in a coherent manner, but the efforts are very much in their infancy. A scoping study by professor John MacKenzie in 2013 set out certain principles for ongoing investigation, and the government response to that study outlined five areas for further research http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/health-response-scoping-study.pdf
Recent research by Peter Irwin of Murdoch University found: “Borrelia burgdorferi sensu lato was identified in German I. ricinus, but not in Australian I. holocyclus ticks. However, bacteria of medical significance were detected in I. holocyclus ticks, including a Borrelia relapsing fever group sp., Bartonella henselae, novel “Candidatus Neoehrlichia” spp., Clostridium histolyticum, Rickettsia spp., and Leptospira inadai.” http://www.parasitesandvectors.com/content/8/1/345/abstract
This research is promising, but although the government has outlined the research areas necessary to resolve the questions posed by Australian Lyme-like illness sufferers, there does not seem to be a coordinated effort to fund and complete the research that is needed. This leaves sufferers with considerable unmet needs.
The only people making any attempt to understand their situation, and to alleviate their suffering in practical ways are the few Lyme Literate Medical Doctors who are practicing in Australia.
This Karl McManus Foundation document discusses the similarities between classic Lyme Disease and Tick Borne Relapsing Fever, both of which are caused by Borrelia species, and notes that the term 'Lyme Disease' has had a confusing effect in Australia, suggesting the term Borreliosis should be used instead http://www.karlmcmanusfoundation.org.au/lyme-disease-borreliosis-relapsing-fever
This PubMed paper notes that Borellia species that cause relapsing fever are linked to neurological involvement as often as those species causing Lyme Disease http://www.ncbi.nlm.nih.gov/pubmed/9455525
However at this site http://www.oneperth.com.au/2011/09/16/dog-of-a-disease-vexes-people/ the article notes Peter Irwin’s advice that Lyme disease testing in Australia is inadequate, his search for Lyme in Australia, and his openness to searching for a causative agent that is not classic Lyme, but which is novel to Australia and is causing Lyme–like illness. Despite Australian and US testing protocols outlined above, the article notes: “If I don’t find evidence of infection in dogs, then it will suggest that these people who have been diagnosed with Lyme may have something else.”
"Dr Irwin said a lack of diagnostic services for Lyme in Australia meant the disease was nearly impossible to detect accurately. “It’s difficult to diagnose Lyme because there’s no single definitive blood test you can do,” he said. “There are loads of tests which give bits of an answer but nothing conclusive.”
Anyone with MS or neurological symptoms suggestive of MS who believe that their history of insect bites (particularly ticks either domestically or overseas), and their list of symptoms indicate a possibility that Lyme Disease and/or co-infections are involved in their neurological deficits, may raise that possibility with their medical professionals. Patients need to be aware of the pitfalls, and that their physician may not know as much about the Lyme Disease Complex as they do. If the patient is given tests they believe to be inferior, or they are not satisfied that their specialist understands the Lyme Complex completely, they can consider contacting a Lyme Literate Medical Doctor for further advice, assessment and testing of both Lyme Disease and its co-infections. Patients may need to insist on a comprehensive battery of tests (including co-infections), and be prepared to consider an antibiotic challenge and re-testing, including sending samples to overseas laboratories to get the best possible testing regime. This may be expensive, but even in the case of an ultimately negative result, it can be very important to that person to know they have done the best they possibly can for themselves in eliminating a devastating differential diagnosis which can destroy a person’s life, and ultimately kill them.
Links:
The person who made the connection between a collection of symptoms shared by residents in a particular area and a specific but unknown illness was not a scientist, but a mother. If she had not been able to tenaciously withstand the misdiagnoses, psychiatric slurs, fob offs and ridicule of the 'scientists' in the medical profession to whom she turned for help, then the discovery of Lyme Disease may never have occurred and immeasurable suffering, disability and medical mistreatment would have continued. Her story is summarised here http://www.blizzz.nl/index.php?sId=50029&lang=en
An excellent article in The Saturday Paper outlining the issues relating to Lyme Disease in Australia
https://www.thesaturdaypaper.com.au/2015/05/23/australia-ticked-lyme-disease/14323032001890
International Lyme and Associated Diseases Society http://www.ilads.org/
The International Lyme and Associated Diseases Society “Evidence-based guidelines for the management of Lyme Disease” http://www.ilads.org/lyme/ILADS_Guidelines.pdf
Some 700 peer reviewed journal articles providing evidence supporting chronically persistent Lyme Disease divided into several different sections. The first section is a general list of articles supporting the evidence for persistent infection. The other sections support persistence as it pertains to psychiatric symptoms, dementia, autism, and congenital transmission.
http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
A 2012 study showing that Borrelia burgdorferi forms antibiotic resistant biofilms, which may explain the phenomenon of chronic Lyme Disease
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0048277
A 2012 study casting doubt on the initial studies which have been used to deny the efficacy of extended antibiotic treatment for persistent Lyme symptoms
http://www.sciencedaily.com/releases/2012/08/120830135314.htm
A comprehensive backgrounder to Lyme Disease http://www.angelfire.com/biz/romarkaraoke/lymeart.html
A wide – ranging discussion of Lyme Disease and co-infections by an American doctor treating Lyme with natural therapies http://www.newswithviews.com/Howenstine/james26.htm
A document linking Amytrophic Lateral Sclerosis (ALS or Motor Neurone Disease) to Lyme Disease http://www.als-cure.com/ALS.pdf
An article noting the discovery of Borrelia spirochetes in ticks preserved in 15 to 20 million year-old fossilised amber. This post notes that Lyme disease was not even recognised until 1975, and that many doctors are still ignorant of tick borne infections. It also mentions that the oldest documented case of Lyme Disease is the Tyrolean iceman. Nicknamed 'Otzi' the 5,300-year-old mummy was found in a glacier in the Italian Alps in 1991. It's ironic that Lyme spirochetes can be isolated from prehistoric ticks and ancient corpses, but are seemingly very difficult to identify in living humans today http://oregonstate.edu/ua/ncs/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race
This page relates to a study that demonstrates the neurodegeneration and demyelination associated with neurological Lyme symptoms
http://www.sciencedaily.com/releases/2015/04/150416084338.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Flyme_disease+%28Lyme+Disease+News+--+ScienceDaily%29
This page notes that Lyme Spirochetes do not use iron, and so evade the 'iron starvation' method that the immune system uses to combat infection
http://www.sciencedaily.com/releases/2013/03/130321205712.htm
This page explains that the Lyme Spirochete 'hides out' in lymph nodes, triggering an immune response, but not one that is strong enough to overcome the infection
http://www.sciencedaily.com/releases/2011/06/110616193911.htm
This page describes a new scientific study which has found that Lyme spirochetes form 'persister cells' which may explain why the bacterium so often proves to be resistant to antibiotic treatment
http://www.sciencedaily.com/releases/2015/06/150601112236.htm
This page highlights the difficulties of diagnosing Lyme. It describes a teenaged patient who presented with stroke symptoms who was actually suffering from Lyme neuroborreliosis. Interestingly the patient had no remembered history of tick bite
http://www.sciencedaily.com/releases/2015/03/150302182428.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Flyme_disease+%28Lyme+Disease+News+--+ScienceDaily%29
A Lyme literate doctor who is finding MS patients with Lyme and co-infections and treating them successfully http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html
Testing:
Interpreting the bands on Western Blot tests http://www.anapsid.org/lyme/wb.html
Igenex – a specialist Lyme Disease (and co-infections) testing lab in America http://www.igenex.com/Website/
Australian Biologics, an Australian lab now offering Lyme Disease testing http://www.australianbiologics.com.au/
CDC 2011 case definition for Lyme Disease noting that the two tier testing regime is for surveillance purposes and is not to be used in clinical diagnosis https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2011/
Australian Lyme Resources:
The Royal College of Pathologists of Australasia position statement on "Diagnostic Laboratory testing for Borreliosis (‘Lyme Disease’ or similar syndromes) in Australia and New Zealand" http://www.rcpa.edu.au/Library/College-Policies/Position-Statements/Diagnostic-Laboratory-testing-for-Borreliosis-Lyme
" Lyme disease in Australia: Denial and evidence" Well reasoned rebuttal of position statements like the RCPA statement on Lyme (which seems to be that it isn't in Australia, so positive tests are not to be relied on, and if there is an indigenous strain, we don't know what we are looking for so we can't test for it). This document explains essentially that you can only deny the existence of Lyme Disease in Australia if you ignore the scientific evidence that has identified Borrelia species in humans, animals and ticks in Australia, and if you accept one study that purported not to find Borrelia, but which did limited PCR testing, also tested unfed ticks, and which did not test for a multiplicity of Borrelia strains, and failed to test for European strains of Borrelia http://www.lymebook.com/aus_6.pdf
Infectious diseases specialist Dr Bernie Hudson's description of Australian tick borne diseases, noting the first description of Lyme Disease in Australia in 1982
https://sites.google.com/site/ticktransmitteddiseasesaust/
It's only possible to deny there is Lyme Disease in Australia if the studies which have identified Borrelia in our ticks are ignored. Here is a link to a 1991 study that asserts that Borrelia species were indeed found in Australian ticks http://www.lymedisease.org.au/wp-content/uploads/2010/11/Detecting-the-cuase-of-Lyme-disease-in-Australia-Med-Jnl-of-Australia-1991.pdf
“Lyme Disease in Australia” a book by Nicola McFadzean, an Australian Naturopathic Doctor, based in America http://restormedicine.com/lyme-disease-in-australia/
The Karl McManus Foundation website http://www.karlmcmanusfoundation.org.au/
Lyme Disease Association of Australia http://www.lymedisease.org.au/
Lyme Disease Association of Australia submission to the 2014 Australian Government scoping study into Lyme Disease http://www.lymedisease.org.au/wp-content/uploads/2010/11/20140129LDAAScopingStudyResponse.pdf
A podcast of the Lyme Disease roundtable held in Sydney as part of the Australian House of Representatives Standing Committee on Health (Chronic disease prevention and management in primary health care). https://soundcloud.com/lymediseaseau/australian-hor-standing-committee-on-health-lyme-disease-roundtable-sydney-18915
Beyond the Bandaid – a site which examines the underlying causes of chronically fatiguing, neurodegenerative and neurobehavioural diseases http://beyondthebandaid.com.au/
Dr Mayne is a Lyme Literate Medical Doctor (now retired) who has written several scientific papers on the emergence of Lyme Disease in Australia http://www.drmayne.com/research.htm
‘A counter-argument to the Australian Government’s denial of Lyme Disease’ http://www.lymeaustralia.com/uploads/8/0/2/7/8027024/lyme_disease_a_counter_argument_to_the_australian_governments_denial.pdf
A document has been discovered dating to 1990 and issued by the QLD Department of Health, warning of the emergence of Lyme Disease https://www.questia.com/newspaper/1G1-367501658/fears-rise-as-disease-risk-grows
Catalyst video article on 'Toxic Ticks' exploring what might be making people ill when bitten by ticks in Australia http://www.abc.net.au/catalyst/stories/4494187.htm
A new Borrelia species has been detected in Echidna ticks in Australia. It is not know if it causes illness in humans as yet
http://www.lymedisease.org.au/wp-content/uploads/2016/06/Loh-2016-Borrelia-Echidna-ticks.pdf?platform=hootsuite
Australian Government Lyme Disease resources:
Australian Federal Government’s website which is providing updates on the department’s work and relevant research findings on Australian Lyme disease-like syndrome http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
Department of Health’s response to prof. John MacKenzie’s 2013 scoping study into Lyme Disease http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/health-response-scoping-study.pdf
Australian Government’s consolidated list of research projects produced by the chief medical officer’s scoping study of 2013 http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm/$File/consolidated-research-projects.pdf
Podcasts of the public hearings of the Australian Senate enquiry into an emerging Lyme-like illness in Australia https://soundcloud.com/lymediseaseau/
Interim report of the Australian Senate enquiry into an emerging Lyme-like illness in Australia http://www.lymedisease.org.au/wp-content/uploads/2016/05/20160504-Senate-Inquiry-Interim-Report.pdf?platform=hootsuite
Some Australian Lyme patient stories:
Australian man receives worker's compensation for Lyme-like illness from tick bites in the workplace https://www.youtube.com/watch?v=ovfZHMFxNks
Hunter woman's recovery from Lyme Disease after overseas treatment http://www.theherald.com.au/story/3747110/hunter-woman-triumphs-over-lyme-disease/
Sam Stosur’s battle with Lyme Disease http://www.samstosur.com/news/my-battle-with-lyme-disease/
Australian woman who has never left the country tests positive to Lyme disease
http://www.gladstoneobserver.com.au/news/disease-claims-quality-of-life/2035687/
Emerging tick borne infections:
Brazil: http://www.scielo.br/pdf/ramb/v56n3/en_v56n3a25.pdf
China: http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(15)00177-2/abstract
Why people with chronic or late stage Lyme may have immune systems that do not react the way the testing regime expects – including seronegative Lyme, and that an IgM response may persist long after infection and treatment:
http://www.differencebetween.net/science/health/difference-between-igm-and-igg/
http://lymemd.blogspot.com.au/2014/04/the-igm-question-is-it-chronic-lyme.html
http://lymemd.blogspot.com.au/2009/12/igm-question-is-it-chronic-lyme-disease.html
http://lymemd.blogspot.com.au/2008/09/all-i-got-was-41band.html
https://lymedout.wordpress.com/2012/04/07/i-dont-think-you-have-lyme-because-your-results-says-positive-igm-and-not-igg/
http://www.nejm.org/doi/full/10.1056/NEJM198812013192203
http://www.ncbi.nlm.nih.gov/pubmed/12189466/
http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=3757
http://www.ncbi.nlm.nih.gov/pubmed/9007597
http://www.karlmcmanusfoundation.org.au/testing
http://www.sciencedaily.com/releases/2014/04/140416171951.htm
http://cid.oxfordjournals.org/content/33/6/780.long
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC423723/pdf/jcinvest00109-0086.pdf
http://www.personalconsult.com/articles/lymeantibioticfailure.html
Australian doctors with an interest in Lyme Disease:
Dr Peter Dobie (Sydney) http://pymblegrove.com/practitioners/dr-peter-dobie
Dr Richard Schloeffel (Sydney) http://emerge.org.au/dr-richard-schloeffel-chronic-fatigue-syndrome-diagnosis-treatment/#.VjV3NDahdzk
http://pymblegrove.com/practitioners/dr-richard-schloeffel
You tube video by Beyond The Bandaid with Dr Richard Schloeffel https://www.youtube.com/watch?v=Vf9TDl5uWqI
Dr Gull Herzberg (Bellingen) http://www.drgull.com.au/
Dr Trevor Cheney (Bellingen) http://www.mncdgp.org.au/practice/bellingen_healing_centre
Dr Hugh Derham (Perth) http://www.healthquest.com.au/clinic.html
New Lyme disease spirochete discovered in the USA
Even though European Lyme disease is know to be caused by several Borrelia species, previously only Borrelia burgdorferi was thought to cause 'classic' Lyme Disease in the USA.
Now the discovery of the previously unknown Borrelia mayonii proves that Lyme symptoms can be caused by other Borrelia. Will this discovery prove useful to Australian sufferers of a Lyme - like illness associated with tick bite in a country where the government denies 'classic Lyme disease' can be acquired?
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(15)00464-8/abstract
http://www.sbs.com.au/news/article/2016/02/09/new-lyme-disease-bacteria-found
https://www.facebook.com/lymestats/photos/a.1555500118055859.1073741829.1555493588056512/1675943579344845/?type=3
Some authorities claim that only Borrelia burgdorferi causes Lyme Disease. This Lancet article relating to the newly discovered Borrelia Mayonii notes that multiple genospecies cause Lyme
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(16)30053-6/fulltext?elsca1=etoc
The Australian Lyme controversy
Several authorities have now agreed that there is something in Australian ticks that is making people very sick. There has been no conclusive evidence to date (2016) that it is Borrelia. Even if Borrelia were found to be endemic to Australia, the Australian medical profession is largely reluctant to accept that Lyme Disease can become a long-term, chronic illness. This is true also in countries where Lyme Disease is endemic. One UK scientific publication suggests that the solution to medical denial of the severe ongoing illness that tick bite victims are suffering is to use an alternative name, "chronic arthropod-borne neuropathy (CAN)", and to create a separate case definition for this condition. The author accepts that although the patients may be seronegative for Lyme, they are seriously disabled following tick bite. Something similar could occur in Australia so that tick bite victims with severely disabling, chronic illness following tick bite can receive mainstream treatment and care http://www.ncbi.nlm.nih.gov/pubmed/24814098
In America there is a tick borne disease that is similar to Lyme Disease, but the causal agent is has not been discovered yet. Crucially, this has not stopped the Americans naming the illness, or warning patients and physicians about it. The disease has been named southern tick-associated rash illness (STARI).
In Australia, people are becoming chronically and progressively disabled following tick bite, with multiple neurological, neuromuscular and arthritic symptoms, sometimes months or years later, yet although the authorities now admit that there is 'something' in our ticks that is making people very sick, no serious effort has been made to name the disease, create a case definition, or alert the community or medical profession of the necessity for early diagnosis and treatment. If the Americans can name and frame STARI when the causal agent is not known, Australia should be doing the same too. The word "Australian" should be used in the title of this illness to give ownership to the Australian medical profession http://www.cdc.gov/stari/index.html
Chlamydophila pnumoniae (Cpn)