Sunday, 27 June 2010
29 Apr 2010 by admin,
permission to post from the author.
What is a Lyme ‘war’?
There are a variety of different social and biological factors which threaten to bring an American style ‘Lyme war’ to Britain. Global warming, new farming methods, and changes in lifestyle activities (such as leisure) have all contributed to the rapid increase of cases of tick-borne infections (TBIs) among British people.
A considerable number of UK citizens (including those infected abroad) may be affected by ‘TBIs‘. These types of illnesses are not simple – they are caused by infections from several different Lyme bugs (strains of ‘Borrelia‘) in additional to a number of potential co-infections. They are also not exclusively ‘acute’ illnesses, much to the confusion of the established medical profession, government health departments and medicine licensing agencies.
Many of these citizens will develop chronic symptoms of Lyme disease – a serious and sometimes complex illness, with some similarities to syphilis, its nearest biological ‘relative’. The real impact of these kinds of health problems is slowly being recognised by a number of key players. For example, the London Climate Change Adaptation Strategy (August 2008) acknowledges:
‘the number of cases [of Lyme] in the UK is lower than in mainland Europe, despite similar densities of infected ticks. This may be due to large number of cases not being detected or reported…..it is important that adequate health surveillance is maintained so that the introduction of new infectious diseases or disease vectors is detected in a timely manner.’
Many of the people who become ill will find it extremely difficult, or sometimes impossible, to get diagnosed, or treated.They will suffer the consequences of neglect by the government’s principal agencies – the Department of Health and the Health Protection Agency (HPA – the body in charge of infectious disease surveillance and epidemiology), concerning this increasingly important area of preventative medicine and treatment. This is despite direct lobbying by Lyme groups, their doctors, MPs and carers who have asked for diagnostic and treatment protocols to be examined in a UK context. This campaign is principally led by Lyme Disease Action (1). The background issues to this debate open up a whole set of other issues about how people with chronic illness are treated, particularly those who have undiagnosed illness. The knock-on effect of this debate therefore has potentially very wide implications.
No-one knows what the true incidence of Lyme disease really is in the UK, since the government and NHS have refused to make it a ‘notifiable’ disease (with the exception of Scotland; the armed forces, and when acquired through an occupational activity). The figures provided are using a ‘voluntary system’ relying on laboratory based test results.
The wide range of symptoms resulting from being infected by the two ‘European’ bugs carried by the ticks (classified as Borrelia garinii and Borrelia afzellii), include skin and arthritic problems, neurological and immune or autoimmune dysfunctions, sometimes called ’Borelliosis’ (2). These symptoms, are frequently not recognised by busy GPs, sceptical consultants, or by the patients themselves. The result is delayed diagnosis – and consequently, delayed treatment; misdiagnosis; or lack of any response from the NHS. Patients call this ’Lyme denial’ and their doctors ‘insultants’.
In the United States the situation has been controversial for a long time. Lyme disease is the fastest growing infectious disease there (HIV was the first until recently). In the UK, the HPA’s own figures show diagnosed cases of Lyme disease have more than doubled since 2000 (including a staggering 797 new cases in 2007, and 813 in 2008) in England and Wales. There are concerns that the number of (known) cases may be doubling every five years.
Many people argue these figures are a gross underestimate of the real extent of the illness. Many untreated patients will develop chronic illness, but not be measured or counted as such. They will end up ’lost’ in diagnostic categories such as ‘fibromyalgia’, ‘M.E.’ (Myalgic encephalomyelitis) or ‘multiple sclerosis‘.
The government and various ‘key agencies’ deny there are central problems that need to be resolved. The HPA and the mainstream medical profession cite guidance by the Infectious Disease Society of America (IDSA) as standard (3). This is because they have no specific guidance of their own that is unique to the UK and which reflects the kinds of health problems encountered by people in the UK. It is assumed there is only one standard – a ‘one-size-fits-all’ approach. The National Institute for Clinical Excellence (NICE), for example, does not have a set of specific guidelines for tick-borne diseases.
The European vs American response to Lyme disease
The biological, social and medical issues in the diagnosis and treatment of Lyme disease are undoubtedly complex, and there are many research questions that have just not been fully investigated yet. Several issues have become controversial including the:
*Accuracy of tests;
*Impact of different treatment regimes and clinical history;
*Impact of multiple infections;
*Access to treatment on the NHS and misdiagnosis;
*Disappearance of patients into different specialities;
*Adequate preventive measures;
*Persistence of the Lyme infection;
*Neglect of basic scientific findings.
The UK government response is to refer back to the IDSA guide, thereby avoiding these issues – rather than finding a distinctly British solution. The HPA suggest that that the European Community Working Group on Lyme disease, E.U.C.A.L.B (European Concerted Action on Lyme Borreliosis) and many European countries have the same guidelines. Patients are frequently referred to the latest NICE guidance on M.E and are denied testing, or treatment, for Lyme disease (5).
A deeper investigation into the connections between European and American policy is revealing. The problem is that the IDSA guidance has only recently been legally challenged. Following an investigation by the Connecticut State Attorney General into their guidelines, IDSA has agreed to review their own Lyme treatment guidelines (without the original people being on the panel) (3). This is because, by legal criteria, the process excluded competing points of view and failed to check for (and reveal) conflicts of interest. IDSA promoted another medical association’s guidelines as corroborating its own, when in fact the two panels shared several members. It was not an inclusive process. Many of the members of the International Lyme and Associated Diseases Society (ILADS) (4) were excluded for the panel leading the review, which took place in July 2009. IDSA and ILADS have rival policy positions in America, however its the IDSA guidance that dominates treatment protocols and practice, across the western world.
The report from this review was due to be presented by the beginning of 2010. All the documents of evidence and videos of the proceedings have been put in the public domain on the IDSA site (3). This openness has enabled detailed and extensive debate, and the different range of evidence relating to the origianal guidance. This would not have taken place had the legal process, instigated by a legal figure, had not happened. There is widespread scepticism, however, that the guide will be changed to help people with chronic Lyme.
An email from EUCALB points out that, strictly speaking, there are as yet ‘no internationally agreed treatment protocols’, and that the guidelines vary for different European countries. They also point out that their (EUCALB’S) guidelines were based on the IDSA guidelines, in the first place. These IDSA guidelines are being re-visited and possibly re-written. It was, quite simply, the same small set of people, writing the same sets of guidelines, with the power to influence another organisation’s policies.
The UK government’s response is, at the very least, evasive – claiming that the IDSA guide is:
‘influential but, as with other medical guidelines, they are not binding on clinicians…..the under agreement the guidelines remain in effect….the view of the HPA is that the IDSA guidelines continue to represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease, and they are in keeping with European expert recommendations…’ (1)
It is just not clear why the UK government uses this guidance. It is also not clear why the NHS uses guidance that is ‘not binding’ while withdrawing or denying treatment options.
The uncertain status of the IDSA guide is NOT the only key issue for the UK. There are important doubts whether any guide from the United States is really relevant to the UK, given the differences in bacterial strains present here. We need UK-orientated policy research and UK-specific guidelines, based as far as possible on UK strains of Lyme infection and the epidemiological patterns demonstrated here.
Patients and their experiences
The HPA has in fact estimated in the past that there could be up to 3,000 new patients per year with this illness in England and Wales alone. Many of them turn to the national charity Lyme Disease Action (LDA) (1) for advice on how to cope. An associated email group received more than 80,000 messages since it was set up in 2001, and the numbers of new members are growing rapidly.
The LDA recently held an e-petition to ask the government to make ‘Lyme disease’ a notifiable disease, so that at least the numbers would reflect true levels of diagnosis. But this request was denied. The net results of the lack of response from government leaves both patients and their GPs (well meaning or not) out in the cold. It is not clear what action, if any, the government or health agencies are planning. The latest (newest) e-petition to No 10 Downing Street, which gathered a total of over 2,000 signatures, led to a disinterested response: the government did not consider it necessary to develop guidelines for the treatment of tick-borne disease for, and in, the UK.
There are limitless social, financial, and medical problems resulting from misdiagnosis and the failure to deliver effective early treatment. For example, the numbers of people with ’generic’ diagnoses such as M.E is high, and growing every year. It is unclear how many of these people may actually be suffering from chronic Lyme disease. The knock-on effects to families, employers, communities and the overall social costs of poor diagnosis are high. This is currently unmeasured, but not unmeasurable. All this provides the conditions for an American-style ‘Lyme War’. However, people enduring these problems in the UK do not need this; what they need is some clear, solid evidence – and swift policy solutions.
Kate Bloor (BSc Human Sciences, MSc Sociology of Health and Illness, MSc Science and Technology Policy) is a researcher and lyme patient. She was assisted in the production of this article by a member of a Lyme organisation, and a professional editor.
(1) Lyme Disease Action, LDA (http://www.Lymediseaseaction.org.uk/)
(2) ‘Borreliosis and Associated Diseases Awareness’ – BADA – UK – a charity dedicated to education on the dangers of ticks infection with tick borne infection) detailing experiences of some Lyme patients (http://www.bada-uk.org/). Video by BADA (http://www.dailymotion.com/frontiershowcase/video/x6f2is_onetick-).
(3) Infectious Disease Society of America – IDSA guide (http://www.idsociety.org/)
(4) International Lyme and Associated Diseases Society (ILADS) – http://www.ilads.org/
(5) ‘The European Union Concerted Action on Lyme Borreliosis‘ – EUCALB (http://meduni09.edis.at/eucalb/cms/index.php?lang=en)
Thursday, 24 June 2010
My Arthritis, Muscle Weakness and Peripheral Neuropathies are no more, since following ILADS Guidelines and being treated on long term antibiotics.
In the midst of all the controversy and denial by the IDSA no thought is given for the pain and disability suffered by Lyme patients and what shocks me the most is the children who are left to suffer, when a short course of antibiotics administered at the time of the bite could prevent a lifetime of pain. I posted some months ago about a Rheumatologist in the UK who refused to test a child, diagnosed with Juvenile Rheumatoid Arthritis, for Lyme Disease. The World has gone mad and it is down to the patients to get well informed over this controversial illness because currently most doctors and consultants really do not have sufficient experience to help us.
I post Dr Cameron's article in full with no apologies for the length of it, everyone should read it in full and know that there are many thousands of patients with Chronic Lyme Disease, World wide and probably many thousands more who do not know that their symptoms are as a result of a Borrelia infection and could be relieved by long term antibiotics.
Proof that chronic Lyme disease exists
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgias, neurocognitive impairment, and neuropathy or myelopathy, a mean of 6 years after treatment for Lyme disease (LD) . Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County were found to have arthralgias, arthritis, and cardiac or neurologic involvement with or without fatigue a mean of 3.2 years after treatment . Klempner trials' subjects presenting with “well-documented, previously treated Lyme disease…had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue” and were ill during a mean of 4.7 years after onset . Fallon trial subjects presenting with “well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment,” were ill during a mean of 9 years after onset . Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” .
There is also evidence that symptoms of CLD can be severe [4–8]. The Klempner trials described the quality of life for patients with posTttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction” . Fallon et al. described pain reported by patients with Lyme encephalopathy as being “…similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure” .
Despite the above documented evidence, the 2006 Infectious Diseases Society of America (IDSA) LD treatment guideline panel questioned the existence of CLD . The IDSA panel concluded, “Considerable confusion and controversy exist over the frequency and cause of this process and even over its existence” . The IDSA panel referred to chronic manifestations of LD as Post-Lyme disease syndrome (PLDS), PTLD and CLD. There are shortcomings for each term. The PLDS nomenclature implies that an active LD has been successfully treated, that any remaining symptoms are merely harmless vestiges of previous illness, and that the patient has been cured. The term PTLD merely implies that LD has been treated with antibiotics for 10 to 30 days. The CLD nomenclature implies that chronic manifestations of LD are present with or without evidence of active infection that cannot be reasonably explained by another illness.
There is no objective way to rule out an active infection. Lab tests that can be very helpful in confirming a clinical diagnosis of Lyme disease (such as the ELISA and Western blot tests) are not useful in determining whether the infection has been adequately treated. Common LD symptoms such as Bell's palsy, erythema migrans rash, meningitis, arthritis, or heart block, which are included in the current surveillance definitions, can be useful in “ruling in” Lyme disease, but the absence or disappearance of these symptoms cannot “rule out” an ongoing infection. A population-based, retrospective cohort study of individuals with a history of LD revealed that they were significantly more likely to have joint pain, memory impairment, and poor functional status due to pain than persons without a history of LD, even though there were no signs of objective findings on physical examination or neurocognitive testing . Two recent mouse studies revealed that spirochetes persist despite antibiotic therapy and that standard diagnostic tests are not able to detect their presence [11, 12]. In sum, there are no clinical or laboratory markers that identify the eradication of the pathogen.
The IDSA panel also questioned the severity of CLD symptoms. The panel dismissed LD symptoms that persisted or recurred after their recommended, short-term course of treatment, stating that they were: “more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection” . The panel came to this conclusion despite four NIH retreatment trials that validated the severity of symptoms on 22 standardized measures of fatigue, pain, role function, psychopathology, cognition, and quality of life (QOL) .
Denying the existence and severity of CLD will continue to hinder the efforts to find a solution. Even in a prospective trial of LD, 10 to 16% of patients treated at the time of an erythema migrans rash remained symptomatic a mean of 30 months after treatment; the results varied depending on the duration of antibiotics treatment . The actual failure rate in this prospective at 30 months is uncertain, given that 38% of the subjects were not evaluable due to poor adherence, receipt of intercurrent antibiotics, or development of a second episode of erythema migrans . Patients infected with many other kinds of common bacteria—such as those that cause tuberculosis, bronchitis, or UTIs—can experience relapses after an initial course of antibiotic treatment fails or proves inadequate. Doctors routinely retreat patients who relapse in order to achieve a cure and prevent chronic symptoms. Why should patients with Lyme disease be treated differently?
The treatment failure rates could be exacerbated by diagnostic delays. Feder described treatment delays of six weeks in LD patients initially misdiagnosed with cellulitis . In his trial, Fallon noted treatment delays averaging 2 years  without examining the causes of the delay. In my own practice, 32% of a consecutive case series of LD cases (confirmed by an ELISA and 5 or more positive bands on a IgG Western blot) had an average treatment delay of 1.8 years.  Of these, 60% conformed to Centers for Disease Control and Prevention (CDC) epidemiological criteria, presenting with a rash, Bell's palsy, or arthritis, yet, still had a diagnostic delay . Patients in this case series were significantly more likely to fail their initial antibiotic treatment if they had delayed treatment . Vrethem et al. concluded that patients treated because of neurological symptoms of LD were much more likely to present with persistent neuropsychiatric symptoms (headache, attention problems, memory difficulties, and depression) three years after treatment than a control group with erythema migrans (50% versus 16%, P < .0001) .
The diagnostic delays could reflect the failure to consider CLD in the differential diagnosis of chronic manifestations of LD. Steere did not include CLD in the differential diagnosis of patients seen in his university-based clinic. Instead, Steere diagnosed three-quarters of patients with “fibromyalgia” or “chronic fatigue syndrome” . Similarly, Reid et al. did not include CLD as a diagnosis in their university LD clinic. Instead, he diagnosed these patients with “arthralgia-myalgia syndrome,” primary depression, asymptomatic deer tick bites, osteoarthritis, and bursitis . Hassett et al. diagnosed PTLD in patients with a history of objective evidence of LD, but withheld it from patients who lacked such a history. Instead, this group was diagnosed with “Chronic Multisymptom Illness (MUI) . Their case definition for Chronic Multisymptom Illness was: “ [having] at least one or more chronic symptoms from at least 2 of 3 categories of symptoms including musculoskeletal, fatigue, and mood cognition” that includes fibromyalgia, chronic fatigue syndrome, and Gulf War syndrome .
The risks to the individual and society of CLD have not been adequately considered . As a group, CLD subjects in the four NIH trials had a 4% risk of a serious adverse event in the antibiotic treatment arms [4–6]. Yet, this risk has not been weighed against the risk CLD patients face if burdened with a long-term debilitating illness. The risk to society of emerging resistant organisms also has not been weighed against the societal risks associated with an emerging population saddled with CLD .
The economic burden of CLD has yet to be addressed. The mean cost estimate of CLD per patient in the US, of $16,199 per annum in 2002 dollars , reflects the toll on human health and cost to society. The annual per-patient cost of CLD is substantially higher than the cost for other common chronic illnesses: $10,911 for fibromyalgia , $ 10,716 for rheumatoid arthritis , and $13,094 for lupus . Eighty-eight percent of the cost ($14,327) of Lyme disease consisted of indirect medical cost, nonmedical cost, and productivity losses. Cutting medical cost would save, at most, only 12% or $1,872 per annum. In 2002, the annual economic cost of LD in the US, based on the 23,000 cases reported to the CDC that year, was estimated to be $203 million . Considering that the actual number of LD cases is believed to be 10 times higher than the number of cases reported to the CDC, the actual annual cost could be $2 billion [23, 24].
The burden of CLD is also reflected in testimony given by Connecticut's chief epidemiologist before the state's Public Health Department in 2004: “…roughly one percent of the entire population or probably 34,000 people are getting a diagnosis of Lyme Disease in Connecticut each year…20 to 25 percent of all families [in Connecticut] have had at least one person diagnosed with Lyme Disease ever and…three to five percent of all families have had someone diagnosed with Lyme Disease in the past year” .
No additional antibiotic trials have been planned for CLD patients despite the limitations of the Klempner and Fallon trials. Klempners' trials were limited by: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) ongoing illness despite a mean of three previous treatments, (3) long onsets of illness averaging 4.7 years, (4) the poor quality of life of the subjects, and (5) small, underpowered sample sizes of 51 and 78 subjects . The Fallon trial had similar limitations including: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) treatment delays averaging two years, (3) onsets of illness averaging 9 years, (4) the severe pain, fatigue, psychopathology, and poor QOL of subjects, and (5) a small underpowered sample size of 37 subjects. The IDSA panel did not suggest any further clinical trials to address these limitations. In an editorial titled “Enough is Enough”, which was published as a commentary on Fallon's trial, Halperin, an IDSA panel member, actually advised against further trials .
There is also an urgent need to address the mixed long-term outcome in children. Eleven percent of children with facial nerve palsy had persistent facial nerve palsy causing dysfunctional and cosmetic problems at 6-month followup . Fourteen percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease on followup . Five of these children developed “behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder” . Children with prior cranial nerve palsy have significantly more behavioral changes (16% vs. 2%), arthralgias and myalgias (21% vs. 5%), and memory problems (8% vs. 1%) an average of 4 years after treatment compared to controls .
Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.
1. Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Annals of Internal Medicine. 1994;121(8):560–567. [PubMed]
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Wednesday, 23 June 2010
Already some patients with Lyme Disease are finding they also have XMRV so it will not just be the ME/CFS patients but also Lyme Disease patients following these developments with great interest.
So many of my symptoms of Arthritis, muscle weakness, swallowing difficulties and Peripheral Neuropathies are found amongst patients with Lyme disease but also with ME/CFS diagnosis. I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica as my symptoms deteriorated over several years, until finally quite by chance my symptoms improved on a chance course of antibiotics and led my GP to suspect Lyme Disease. I was lucky and have regained my health after many months of antibiotics, others are not so lucky as myself.
'We ( FDA& NIH )have independently confirmed the Lombardi group findings'
Dr. Alter's presentation at the 2010 IPFA/PEI workshop "Surveillance and screening of Blood Borne Pathogens" (A PDF of his presentation):
Page 10 of 30 pasted below
Comments on the Agent Du Jour -XMRV
•The data in the Lombardi, et al Science manuscript are
extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV
sequences, but they have infected prostate cell lines and
recovered gamma retrovirus particles and have transmitted
XMRV to rhesus macaques by the IV route and demonstrated
•Although blood transmission to humans has not been
proved, it is probable
•The association with CFS is very strong, but causality not
•XMRV and related MLVs are in the donor supply with an early
prevalence estimate of 3%‐7%.
•We (FDA & NIH) have independently confirmed the Lombardi
The above was discussed on Osler's web by Hilary Johnson details found here
and the original press release here
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: email@example.com.
Saturday, 12 June 2010
That was the title of the London ILADS conference today at the Royal College of Obstetricians and Gynaecologists.
Today was an amazing day!
I was asked to help out at reception for the ILADS London conference and living within easy travelling distance I was honored to be asked.
I had the opportunity to spend some time listening to and seeing some of the presentations. They were ground breaking medical presentations from some of the World's top Lyme treating doctors.
Sarah did us proud in organising such a prestigious event and getting so many doctors together from USA, and Europe including the UK of course. The opportunity for these doctors to interact with the Lyme Doctors was I am sure of great benefit to them and in turn one day to the patients.
It was very sobering to see and hear the dedication so many of these doctors have in fighting these tick borne diseases and their co infections. It was quite obvious listening to the presentations how complex an illness most patients have and how multiply infected many patients are as well as noting what a wealth of knowledge is shared amongst the Lyme Doctors.
I am sure there will be some detailed feed back from the conference but I do want to express my thanks to Sarah for all she has done to drive this forward to such an obvious success. Lets hope this will be the first of many more to come.
My own chronic symptoms of Muscle weakness, Arthritis, Fatigue, Dysphagia and Peripheral Neuropathies which as my symptoms became progressively worse were diagnosed as Hormonal, Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo skeletal Disease, Polymyalgia Rheumatica, eventually improved when treated on long term antibiotics for Lyme Disease.
I only ever had a clinical diagnosis of Lyme Disease never had a positive blood test although the research does show that blood tests can miss up to 50% of cases.
Listening to these presentations today two things were apparent to me. One that although we with Lyme diagnosis have so many multi organ/systems affected there are so many similar symptoms. I found myself nodding to the list of symptoms described by Dr Corson and also many Dr Martz described, it had already occurred to me how many of my symptoms are similar to those patients with ME/CFS and other illnesses. In fact the only differences seem to be that I have got well on antibiotics.
The second thing that was apparent was the multiple infections discussed, really not just Lyme Disease but a multi complex illness including bacterial infections, viral infections, immune deficiencies and other co founders.
This ties in well to a post I did a few days ago that of the presentation by Amy Proal DON'T PALLIATATE, STIMULATE!
Perhaps we are at the turning point of moving into a new age in medicine!
Tuesday, 8 June 2010
Lyme Disease Action on their website posted the following.
From Lyme disease to a Grand Slam final...
Saturday’s French Open ladies tennis final will crown an incredible comeback from Lyme disease for Australian Sam Stosur. A late-blooming success, Stosur was struck down by the debilitating illness – which is caused by the bite of an infected tick and can affect the joints,
the heart and the nervous system - for ten months in 2007.
She’s recovered though, to such an extent that after beating Serena Williams and Justine Henin en route, she’s now the favourite to secure her first Grand Slam title against Italy’s Francesca Schiavone.
Stosur’s newfound fame should bring Lyme disease further into the limelight – with regular mention of the problem appearing in recent national newspapers and BBC news articles on the Australian.
Says Stella Huyshe-Shires, the Chair of Lyme Disease Action: “This is a remarkable achievement for someone who was once so weakened by Lyme disease she could barely complete the most menial task.”
Talking to the Press Association, Sam Stosur admits she never could have imagined she would reach a Grand Slam final when she was battling the Lyme disease, which could have ended her career. “When I was out, I never let myself doubt the fact that I would return. Obviously, I had no
idea what was going to happen."
Stosur has come a long way since the illness gripped her three years ago but confesses “I'd never wish to go through any of that ever again. I think I'm pretty fortunate that I was able to come back and be healthy so quickly. It was a long time, but relatively quickly compared to a lot of other stories
I have heard.”
Lyme Disease Action (www.lymediseaseaction.org.uk) is a UK-registered charity striving for greater awareness of Lyme disease and associated tick-borne diseases.
Ends June 2010
Press: Issued by Lyme Disease Action’s press office (www.lymediseaseaction.org.uk).
For more information, or to speak to Stella Huyshe-Shires, the Chair of Lyme Disease Action, please contact
Sue Ockwell or Camilla Colley via email - firstname.lastname@example.org - or ring 020 8891 4440.
A Lyme disease poster, showing how to remove a tick correctly, and leaflets on Lyme disease, are available
for publication if required or for readers to take to their own local GP or veterinary practice
Monday, 7 June 2010
The Internet is a powerful media and patients can no longer be ignored especially when there are such powerful presentations like the ones above. I look forward to seeing the finished documentary.
The Documentary film Under our Skin has also done much to highlight the plight of patients with Lyme Disease and the controversies surrounding diagnosis and treatment to view that trailer click here or find it in my side bar.
When the ground swell is sufficient the balance will tip and we are not far from that tipping point with ME/CFS and/or Lyme Disease. The thousands of patients World wide will not be ignored for ever their voice will be heard and some physicians, who have marginalised these two illnesses for their own financial gain, will be 'hung out to dry'. The OPINIONS of these physicians have caused science to stand still or be ignored and resulted in thousands of patients un necessary suffering.
Symptoms of ME/CFS and/or Lyme Disease can be many and similar to each other. Arthritis, Muscle Weakness, brain fog, headaches, fatigue, Fibromyalgia, neurological symptoms twitching, tingling, psychiatric, palpitations the list is endless.
Sunday, 6 June 2010
Below is a copy of their first post on Facebook but there are many more to read at http://www.facebook.com/home.php?#!/pages/Lyme-Disease-Action/122058224483868
Lyme Disease Action You thought the IDSA guidelines were unequivocally upheld? What no-one is telling you: LDA has issued a press release highlighting what the IDSA Review Panel actually said and how they recommended changes to the guidelines.
Lyme disease review panel : the truth is in the detail
The Lyme disease review panel of the Infectious Diseases Society of America (IDSA) has released its long-awaited final report following an enforced review of the controversial 2006 Lyme disease guidelines, which are also used in the UK.
If you have like me Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica diagnosis then do follow the above links and have a good read because who knows doctors could be missing other cases of undiagnosed Lyme Disease as they did with me for 4 years. Now diagnosed with Lyme disease and after many months of long term antibiotics I am nearly 100% with no pain, no disability, no Arthritis or Muscle Weakness and able to enjoy my garden again.
Lyme Disease can present as Neurological symptoms and be mis diagnosed as MS, MN, Parkinson's, Autism, ADHD, OCD.
It can also cause problems with the heart and the brain and any organ or system in the body depending where the infection goes.
Saturday, 5 June 2010
DON'T PALLIATATE, STIMULATE!
DrTrevorMarshall — 30 May 2010 — Amy Proal speaks at the Ljubljana International Congress on Autoimmunity, on May 6, 2010. Her topic is "Metagenomic Symbiosis between Bacterial and Viral Pathogens in Autoimmune Disease."
This is a fascinating presentation on Auto immune illnesses. Not just Lyme Disease but all auto immune illnesses.
Rheumatoid Arthritis another auto immune illness was being treated on antibiotics and patients were having a response long before Steroids were developed. With the introduction of steroids in 1949 medicine thought they were a wonder drug and now how many thousands of patients around the World are put on these drugs. In my case with Arthritis and muscle weakness steroids clearly worked in reducing inflammation and enabled me to struggle on a little longer in working although at reduced hours and pay. All the time my symptoms progressed through my body not rapidly but insidiously.
Once my doctors realised that it was a bacterial infection Lyme Disease causing my arthritis, Muscle weakness, peripheral Neuropathies, and worst of all Dysphagia then on antibiotic treatment I was eventually able to reduce and then stop steroids and gradually over many months of treatment on just antibiotics I regained my health although I had been retired early on ill health grounds.
It is quite likely that the treatment on steroids suppressing my immune system would have allowed my infection to get a greater hold and thus making my recovery more protracted.
I posted about Dr Brown's work at his clinic here he was treating patients who had Rheumatoid Arthritis for 50 years before his death in the late 1980's. He found that antibiotics long term improved the symptoms of Arthritis. In fact there was research done at Charing Cross Hospital some years back.
I came across Dr Brown's work through www.roadback.org
Road Back foundation says the following on their home page
You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.*
Friday, 4 June 2010
Top experts in the field of Lyme on Gab with the Gurus a must to listen too.
Anyone who suffers with symptoms like mine Arthritis, whether it be Rheumatoid or especially if it is Juvenile Rheumatoid Arthritis, Muscle Weakness or even Neurological problems or Psychiatric problems, or if like me you have been diagnsoed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, musculoskeletal disease, Polymyalgia Rheumatica, in fact anyone visiting my blog would do well to listen to this recording, one thing very clear is that the science is not all known about Lyme Disease or other tick borne illnesses.
What the Gurus are saying is that if doctors don't know what is causing your many symptoms and you suspect a tick bite then keep looking until you can find a doctor to help you. So don't stay sick but do something about it and ask the doctor how many cases he has treated of Lyme Disease and how much time he is prepared to spend on considering this diagnosis. This would be a good indication on the competance of this doctor in dealing with Lyme Disease whilst there is so much controversy and two standards of care in treating patients.
Lyme Disease: The Dangerous, Tick-Transmitted Disease -- What it Is & How to Avoid It with Top Gurus
2/06/2010 19:00 - Length:1 hr 30 min
Learn about Lyme disease, the fastest-growing infectious disease, which is transmitted by infected ticks. This show will also help you learn how to identify if you have the disease and how to get treated. We'll also discuss why the medical community is so flummoxed by their patients' ailments.
My guests include Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Disease Epidemic"; Dr. Leo J. Shea, III, vice president of the International Lyme and Associated Diseases Society (ILADS) and Clinical Assistant Professor of Rehabilitation Medicine at Rusk Institute, a division of the New York University Langone Medical Center; Phyllis Mervine, founder of the California Lyme Disease Association (CALDA); and Connie Strasheim, a health Care Journalist and author of two books about Lyme disease, including her latest, "Insights Into Lyme Disease Treatment." Please read my recent op ed piece on AOL News. Learn more at ==== >> http://tinyurl.com/OverlookedEpidemic-Connie-AOL
Dr Leo J Shea will be presenting his new research on 12 June at the ILADS London Conference. see www.ilads.org for details.
Tuesday, 1 June 2010
It wasn't until my experiences of incompetent doctors and arrogant consultants that I really started to question my illness, Arthritis, Muscle weakness, Peripheral Neuropathy Dysphagia. The more I have read, the more amazed I am at how little is known about the cause of most illnesses.
Oh yes medics know that if you suppress the immune system with this steroid or that anti inflammatory then symptoms subside but what of why that inflammation is there in the first place? Is it all in my head because the tests don't show anything? Can one mentally make ones body produce inflammation selectively joint by joint and muscle by muscle not to mention the tingling, burning and twitching? Well that is what some doctors suggest. Has the Immune system gone wonky and is attacking it's own body? Well there is no direct proof of that, it is only an assumption.
I left a comment recently on some medical blog and was told in no uncertain terms that my improvements were placebo or anti inflammatory effects of antibiotics and couldn't possibly be that they were dealing with a long standing infection. One wonders if they treat their TB, Leprosy or Syphilis patients in the same way, because Lyme Disease is as complex as Leprosy and TB and even more complex than Syphilis.
I have been astounded at the Shenanigans the IDSA has got up to. 4 out of 8 of their panel were not happy with the Blood tests for Lyme Disease. What did IDSA do? Nothing!
It seems that all the evidence and research presented to them details of some can be found on www.ilads.org was dismissed as not relevant. Why? because they were not Randomised Placebo Controlled Trials. The only four ever done all had serious conflicts and were open to very different interpretation.
Now the latest from the IDSA seems that in fact Practise Guidelines are not as most medics believed based on “evidence based medicine”.
At the last IDSA annual meeting, two poster sessions said that most of the IDSA guideline recommendations were not based on good evidence, but on opinion. It turns out that while the IDSA gives very strong recommendations, they are not supported by much actual evidence.
Do read what Lorraine Johnson has to say on this matter on her blog Lyme Policy Wonk by clicking here
So while certain peoples' opinions are keeping the lid on the extent that Lyme disease is affecting so many thousands of patients World Wide it is best to get well informed and if like me you are told you have Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Muskulo Skeletal Disease or Polymyalgia Rheumatica then do your own research because who knows like me it could turn out to be Lyme Disease, but don't expect too much help along the way from your doctors, unless of course they have spent many years treating patients with Lyme Disease.
Remember the doctors claiming Lyme Disease is so easy to cure on a few days antibiotics don't see their patients again, they are turned away to put up with their symptoms for evermore, or the really savy ones find a different doctor, one that knows that longer courses of antibiotics can help. But the opinions of the doctors having real successes are unimportant to the Bully boys of the IDSA.