CLINICAL DIAGNOSIS - SAY MAKERS OF LYME DISEASE TEST KITS

Trinity Biotech make the test kits for Lyme Disease used here in the UK.

It is interesting to read their recently updated website here


Lyme disease is a multisystem disease caused by the spirochete Borrelia burgdorferi (1). The disease has been documented in Europe since early this century. It was documented in the United States during an epidemic in 1975 among children in Old Lyme Connecticut who demonstrated arthritic symptoms. Steere, et al. recognized the disease as a unique clinical entity (2,3). The symptoms of Lyme disease have been mistaken with many diseases including: juvenile rheumatoid arthritis, lupus erythematosis, multiple sclerosis, Bell’s palsy, rheumatic fever, Reiter's Syndrome, myocarditis and viral meningitis (4).

The spirochete is transmitted by ticks of the genus Ixodes from animal reservoirs such as deer, mice, dogs, horses and birds. The ticks are commonly found on vegetation in endemic regions especially in wooded areas common to the animal reservoir. The incidence of human infection coincides with the tick season from May through September (3,5).

Although the symptoms of Lyme Disease are varied and sometimes unclear, three distinct phases of the disease are recognized. Early manifestations include a single or multiple rash called erythema migrans (EM), a meningitis stage during the next weeks to months is often seen. Late manifestations are recognized to include arthritis or neurologic signs and symptoms. In asymptomatic or subclinical cases, symptoms of infection may not be evident until the later stages of disease (5).

Isolation of B. burgdorferi in culture is definitive evidence of active infection, but is not practical. Detection of specific antibodies is practical but an indirect marker of exposure. Patients produce IgM antibodies within a few weeks of the appearance of EM. Although only IgM antibodies may be detectable during the first month, IgG antibodies increase in most patients after approximately one month. Detectable levels of both IgG and IgM may persist for years (5,6).

B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8).

The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9).

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I don't think this could be put much clearer - negative tests can not be used to rule out the patient having Lyme Disease.

Why then are there so many doctors and consultants still telling patients here in the UK you don't have Lyme Disease your test result was negative?

Well I think the answer is that they are told this incorrect information from the 'expert' or certainly that was the case for me when I consulted a Rheumatologist who was taking an interest in Lyme Disease, he quoted this expert.

Thankfully for me I had a GP who had seen my amazing recovery on antibiotics, from being severely incapacitated with arthritis and muscle weakness and so continued to treat me on long term antibiotics despite the advice issued by our Health Protection Agency 'expert' who said she should stop giving me antibiotics. I continued to recover and can enjoy a normal life once more.

We need more doctors and consultants to be allowed to think for themselves and not be dictated to by a narrow definition which has insufficient basis to be used to restrict diagnosis and treatment of this emerging complex illness.

Whilst the science continues to emerge over this complex illness it is important to do our own research so that we can discuss with our doctors the best treatments for us, bearing in mind our doctors are often too busy to spend the time needed to read the abundant scientific research that shows that for some of us a short course of antibiotics is just not adequate.

PROOF THAT CHRONIC LYME DISEASE EXISTS

Thank you Dr Daniel Cameron for fighting for our health.

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.
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Proof that chronic Lyme disease exists

http://www.lymeproject.com/lymenews/lyme_disease_journals/46.html

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) [1]. 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 [2]. 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 [3]. 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 [4]. Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” [5].
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” [3]. 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” [4].
Despite the above documented evidence, the 2006 Infectious Diseases Society of America (IDSA) LD treatment guideline panel questioned the existence of CLD [9]. The IDSA panel concluded, “Considerable confusion and controversy exist over the frequency and cause of this process and even over its existence” [9]. 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 [10]. 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” [13]. 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) [9].
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 [14]. 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 [14]. 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 [15]. In his trial, Fallon noted treatment delays averaging 2 years [4] 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. [16] 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 [16]. Patients in this case series were significantly more likely to fail their initial antibiotic treatment if they had delayed treatment [16]. 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) [17].
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” [18]. 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 [16]. 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) [19]. 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 [19].
The risks to the individual and society of CLD have not been adequately considered [20]. 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 [8].
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 [8], 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 [21], $ 10,716 for rheumatoid arthritis [21], and $13,094 for lupus [22]. 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 [8]. 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” [24].
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 [25]. 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 [26].
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 [27]. Fourteen percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease on followup [28]. Five of these children developed “behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder” [28]. 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 [29].
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.
References
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]
2. Asch ES, Bujak DI, Weiss M, Peterson MGE, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. Journal of Rheumatology. 1994;21(3):454–461. [PubMed]
3. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. New England Journal of Medicine. 2001;345(2):85–92. [PubMed]
4. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992–1003. [PubMed]
5. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923–1930. [PubMed]
6. Klempner MS. Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease. Vector Borne and Zoonotic Diseases. 2002;2(4):255–263. [PubMed]
7. Cameron DJ. Clinical trials validate the severity of persistent Lyme disease symptoms. Medical Hypotheses. 2009;72(2):153–156. [PubMed]
8. Zhang X, Meltzer MI, Pena CA, Hopkins AB, Wroth L, Fix AD. Economic impact of Lyme disease. Emerging Infectious Diseases. 2006;12(4):653–660. [PubMed]
9. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessments treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clinical Infectious Diseases. 2006;43(9):1089–1134. [PubMed]
10. Shadick NA, Phillips CB, Sangha O, et al. Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease. Annals of Internal Medicine. 1999;131(12):919–926. [PubMed]
11. Hodzic E, Feng S, Holden K, Freet KJ, Barthold SW. Persistence of Borrelia burgdorferi following antibiotic treatment in mice. Antimicrobial Agents and Chemotherapy. 2008;52(5):1728–1736. [PMC free article] [PubMed]
12. Yrjänäinen H, Hytönen J, Söderström K-O, Oksi J, Hartiala K, Viljanen MK. Persistent joint swelling and borrelia-specific antibodies in Borrelia garinii-infected mice after eradication of vegetative spirochetes with antibiotic treatment. Microbes and Infection. 2006;8(8):2044–2051. [PubMed]
13. Halperin JJ, Shapiro ED, Logigian E, et al. Practice parameter: treatment of nervous system Lyme disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology. 2007;69(1):91–102. [PubMed]
14. Wormser GP, Ramanathan R, Nowakowski J, et al. Duration of antibiotic therapy for early Lyme disease: a randomized, double-blind, placebo-controlled trial. Annals of Internal Medicine. 2003;138(9):697–704. [PubMed]
15. Feder HM, Jr., Whitaker DL. Misdiagnosis of erythema migrans. American Journal of Medicine. 1995;99(4):412–419. [PubMed]
16. Reid MC, Schoen RT, Evans J, Rosenberg JC, Horwitz RI. The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study. Annals of Internal Medicine. 1998;128(5):354–362. [PubMed]
17. Vrethem M, Hellblom L, Widlund M, et al. Chronic symptoms are common in patients with neuroborreliosis—a questionnaire follow-up study. Acta Neurologica Scandinavica. 2002;106(4):205–208. [PubMed]
18. Steere AC, Taylor E, McHugh GL, Logigian EL. The overdiagnosis of Lyme disease. Journal of the American Medical Association. 1993;269(14):1812–1816. [PubMed]
19. Hassett AL, Radvanski DC, Buyske S, Savage SV, Sigal LH. Psychiatric comorbidity and other psychological factors in patients with “chronic Lyme disease” American Journal of Medicine. 2009;122(9):843–850. [PubMed]
20. Cameron DJ. Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients. Medical Hypotheses. 2009;72(6):688–691. [PubMed]
21. Silverman S, Dukes EM, Johnston SS, Brandenburg NA, Sadosky A, Huse DM. The economic burden of fibromyalgia: comparative analysis with rheumatoid arthritis. Current Medical Research and Opinion. 2009;25(4):829–840. [PubMed]
22. Clarke AE, Esdaile JM, Bloch DA, Lacaille D, Danoff DS, Fries JF. A Canadian study of the total medical costs for patients with systemic lupus erythematosus and the predictors of costs. Arthritis and Rheumatism. 1993;36(11):1548–1559. [PubMed]
23. Ebel GD, Campbell EN, Goethert HK, Spielman A, Telford SR., III Enzootic transmission of deer tick virus in new England and Wisconsin sites. American Journal of Tropical Medicine and Hygiene. 2000;63(1-2):36–42. [PubMed]
24. http://www.ct.gov/ag/lib/ag/health/0129lyme.pdf, p. 290, 2008.
25. Cameron DJ. Generalizability in two clinical trials of Lyme disease. Epidemiologic Perspectives and Innovations. 2006;3, article 12
26. Halperin JJ. Prolonged Lyme disease treatment: enough is enough. Neurology. 2008;70(13):986–987. [PubMed]
27. Skogman BH, Croner S, Nordwall M, Eknefelt M, Ernerudh J, Forsberg P. Lyme neuroborreliosis in children: a prospective study of clinical features, prognosis, and outcome. Pediatric Infectious Disease Journal. 2008;27(12):1089–1094. [PubMed]
28. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatric Infectious Disease Journal. 1998;17(3):189–196. [PubMed]
29. Vázquez M, Sparrow SS, Shapiro ED. Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease. Pediatrics. 2003;112(2):e93–e97. [PubMed]

LYME DISEASE TO A GRAND SLAM FINAL

Much has been in the news recently about Sam Stosur being in the tennis final but many newspapers report about her comeback from suffering with a debilitating case of Lyme Disease.



Lyme Disease Action on their website posted the following.

http://www.lymediseaseaction.org.uk/releases/lda_41.pdf


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 - press@lymediseaseaction.org.uk - 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

DON'T PALLIATATE, STIMULATE!

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.*

BULLY BOY TACTICS WITH OUR HEALTH

During my recovery from my long chronic illness I have like many of us do, turned to the internet for information. When we are well we never think to question health issues and I had always assumed my doctor knows best to a greater extent.

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.

THE DANISH PEOPLE EXPOSE CONFLICTS OVER TESTS

This is rather a lengthy translation and perhaps not particularly good English in parts but certainly highlights our problems and some of the reasons why we have them.

If you have Fibromyalgia, ME/CFS, Polymayalgia Rheumatica, Arthritis or Neurological problems as I did, then do read on.
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The Danish test for the disease Borrelia is very uncertain, says foreign experts. The doctor who has advised the Board of Health on using a particular Borrelia test at home, has developed it and make money on the sale - and he has not disclosed his conflict of interest

When we in Denmark should test for the disease Borrelia - a bacterium transmitted by ticks - doctors use the test called ELISA. It stands for clearly recommended in an article IngentaConnect from 2006, written by Chief Physician at Rigshospitalet - and leading borreliaekspert in Denmark - Klaus Hansen.

In the article writes Klaus Hansen, the ELISA test is preferable when the diagnosis of Borrelia necessities. The rival Western Blot he advises not to use. A similar conclusion appears in the clarification report from 2006, which underlies the Board of Health recommendations. The report has Klaus Hansen as co-author. Klaus Hansen has even developed the version of the ELISA test that is most widespread in Denmark - and he makes money on sales.

According to Klaus Hansen is "irrelevant, " how much money it involved. Information learns that there be between 75,000 and 100,000 ELISA tests in Denmark every year and to Klaus Hansen's version of the test is about half the market. There are so sold up to 50,000 by Klaus Hansen ELISA year alone on the Danish market. Information has not been able to get the price of the test, but Statens Serum Institut is 590 kr. patient to make it.

Doctor's economic interests is not clear from either the articles or clarification report from 2006.

It is a clear example of the problems that arise when doctors have conflicts of interest, says Inga Marie Lunde from Doctors Without Sponsor, a network of physicians that promotes independence from commercial interests:"It is a lucid example of disguised marketing. We are assessing the texts have not an earthly chance to deal with it, "says Inga Marie Lunde ..She particularly notes that Klaus Hansen has also written clarification report without giving any conflicts of interest:»Clarifiers report is indeed the one that underlies the Danish practice in this area - on which we all practitioners inform us after," says Inga Marie Lunde.

Also in Ugeskrift For Doctors believed that Klaus Hansen acted wrong:"He should have shown this interest in his article in Ugeskrift for Physicians," writes science editor, Jacob Rosenberg in a brief email to Information. Doubts about testELISA, as Klaus Hansen and his colleagues recommend is also uncertain, says several experts who have spoken to Information. They prefer typical Western Blot test, which Klaus Hansen fining the report advises against the use of.

Among these are medical and research director Nikolaus Ackermann from the renowned Max von Pettenkofer Institute, Ludwig Maximilians University in Munich:»Western Blot tests are clearly better than the ELISA test. It is more precise. It has been recognized in Germany, where it becomes more and more common to use the Western Blot. The optimum is to use both tests, so you can compare the results, "says dr. Nikolaus Ackermann.

Even the American doctor Daniel Cameron, leader of ILADS - International Lyme And Associated Diseases Society, an international, nonprofit, medical Borrelia organization. Daniel Cameron has worked with Borrelia in 23 years and believes that the Danish doctors oblique collateral to the ELISA test, patients come to evil:"Our frustrations with the ELISA test is that it gives too many fejldiagnosticering er. The Danish doctors rely on tests, and it is a mistake that ultimately goes beyond the fault diagnosed patient. Because if doctors get a negative response from the ELISA test, so start the no treatment of the infected patient, "says Daniel Cameron.

Consultant for the German private hospital for borreliabehandling, Borreliosis Centrum Ausburg, Karsten Nicolaus, believes that the ELISA test alone is useless to diagnose the disease:"ELISA tests are the cheapest - and it is the only incentive to use them as I see it. There is certainly no medical explanations for that user testing, and my suggestion is that you throw it away, "says Karsten Nicolaus. Also in the Statens Serum Institut believe Dr. Kari Mølbak that Western Blot is the best way to diagnose on.'The great strength of the Western Blot is that it can exclude other bacteria that resembles Borrelia. - Which Lyme test is best?"The Western Blot," says Kari Mølbak.

Yet he believes that the Danish practice of using only the ELISA test, is fine:'ELISA test is cheaper and more convenient in a daily context, and for routine use, it will usually be fully sufficient, "says Kari Mølbak who emphasizes that he sticks to the recommendations of the Danish experts - meaning Klaus Hansen and the other authors for clarifying the report. ELISA tests can give both false positive and false negative results. This means that one can learn that you have the disease without it - and to get to know that you do not have the disease, even if you have it. The false-positive results are most common. Both are obviously dangerous - especially the false negative results which may lead to prolonged untreated illness. An untreated Lyme disease can cause severe paralysis and pain from the sick.

No evidenceKlaus Hansen denies that the Western Blot is the best way to diagnose at:"In our industry we are so evidence-based. And there is no evidence that Western Blot is better," says Klaus Hansen.

Regarding conflicts of interest Klaus Hansen admits that he erred:"It's true. And I can only regret that I am not informed about it when we made the clarification report, "he said, adding:"In retrospect should have been that I had a relationship with the company concerned. But there was no ulterior motive behind it was not there. We thought about just not over it. "- How can you not think that even make money at it, you sit and recommend?

"You have to take my word that I have not thought about it. Today I can see that I should have done. And had anyone told me back in 2006, then I should have said 'yes, of course, should we write it', "says Klaus Hansen.

In fining the report is right now - in April 2010 was added to Klaus Hansen has a conflict of interest. Initially, wrote the group behind the report conflicts of interest in, without writing there was a new and updated version. Clarification report named so still '1. edition 2006 '. It is so in other words, as if the conflict of interest had always been included. Only when information again addressed, it will be entered, that there is a new version from April 2010. It was because the group behind the report a "bug, which has now been corrected.

Klaus Hansen wants despite several invitations not to say how much money he earns on the sale of the ELISA tests."It does not matter. And this is my last word on the matter, "says Klaus Hansen.

Borrelia infection, also known as Lyme Borreliosis, is a bacterium transmitted to humans by ticks, a blood-sucking mite.The first danger signals: A growing red spot around the place where the tick bed. The red stain is typically one to four weeks after the bite and the tick is usually gone. Spot becomes progressively larger and larger. Symptoms: fatigue, headache, mild fever and joint pain.

Exacerbations: Approximately one in ten develop so-called neuroborreliose (borreliosis of the nervous system). Symptoms often start with pain typically between the shoulder blades and neck. You may get nerve paralysis, most commonly of the facial nerves. Can also appear as meningitis (meningitis) .

Uncertainty about Danish Borrelia diagnoses

Many Danish patients consider that they have Lyme disease even though they repeatedly tested negative in the Danish test. They fail something else believes Danish experts. In Norway, you are more open to that patients have Lyme disease, although they tested negative

Many Danes believe themselves that they have Lyme disease, although they have been tested negative for the disease at home. But that information today can tell, is the Danish ELISA insecure, and hence we can not exclude that patients are actually sick. When the tests can give a so-called false negative results, due, among other things, that some people are very slow to form the antibodies to test for and therefore will be tested early. A penicillinkur early may mean that the antibodies are hard to find. Foreign researchers also believe that some people never form the antibodies, even if they are sick - but this is a controversial phenomenon - and most experts accept that it is possible. Among them is Dr. Klaus Hansen from Copenhagen University Hospital: "It is true that the test can give false negative results. But only in the first week of the disease. Within three months, all antibodies and therefore be tested positive with an ELISA test, if the infection is active and thus require treatment, "says Klaus Hansen, who is co-author of the Danish decanting report that underlie the Danish practice in this area . It is called the phenomenon of 'occult chronic Borrelia infections. "Klaus Hansen's interpretation is backed up by most of Borrelia-experts, but in eg Norway are beginning to have a more open attitude towards the possibility that you may have chronic Borrelia although it does not produce antibodies. In the Norwegian equivalent of the Danish clarification report that guides practitioners in the diagnosis and treatment of Lyme disease, it encourages an open attitude in this area.

The report provides further that there is much that medical science still does not know about Lyme disease, which doctors must have in mind - especially to those patients who might have a condition, "which later may prove to be overlooked by current health system . 'The report also recommends that you make a scientific study of the phenomenon. Stress or depression At Statens Serum Institut is Dr. Kari Mølbak one of the experts who relate open to the possibility and consequences of developments: "It may be that we in a few years will have a different view of Borrelia. The science is evolving and this is one of the questions that are not scientific consensus, "says Kari Mølbak. In Denmark it is the widespread perception that a negative ELISA test means that you have not Borrelia. Typically patients receive diagnoses stress, chronic fatigue syndrome or depression. Patients myself believe that it is because the ELISA test can not be used to identify their illness.

Patients feel they are faced with great arrogance in the Danish health system.

Information has also spoken with a number of Danes who have made a negative ELISA test in Denmark, but has since been found positive abroad when their own cost, have undergone a second type of test. Health Lawyer Karen Vanderhoof-Forschne r, founder of the Lyme Disease Foundation (Borrelia Fund), deals with many cases of misdiagnosis: "Fault Diagnosis and false negative tests may lead to persistent pain, blindness, dementia, disability - and these are the psychological consequences. Private one can lose his job, a wife or husband and being deprived of education or his social life, "she says.

Patients abroad
Practitioner Claus Hancke is one of Danish doctors who send patients abroad to be investigated because he did not think we are good enough to make the diagnosis at home: "I have had many patients who tested negative in Denmark, and then you have closed the possibility of a treatment. But they may well be sick anyway, and we do not recognize. But the longer you go in the Danish system, the more you become incapacitated, the disease attacks the unyielding, "he says. Precisely therefore invites Claus Hancke his patients to be diagnosed abroad: "Many of my patients are tested positive abroad. And when they receive treatment with large amounts of intravenous antibiotics, they are immediately better, "says Claus Hancke.

But Klaus Hansen from Rigshospitalet believe it if necessary may be a placebo response that is to say that the patient feels that the medicine works, although in reality it has no power: "Placebo effect is an important factor when it comes to this kind of problem," says Klaus Hansen, referring to a study published in The New England Journal of Medicine in 2001. It is carried out among 129 patients who claimed to have Lyme disease but was antibody negative. Half got antibiotics and the other half received placebo, but 40 percent of both treatment groups were better. He also stresses that many of the foreign borreliaklinikker are private and make money on the patients: "It's not impossible to imagine that these clinics are interested in interpreting test results as positive. And it is very inappropriate. This results in the possibility of misdiagnosis, so you do not find the real disease - and an unreasonable over treatment for a suspected and in my view dubious Lyme disease, "says Klaus Hansen.

Claus Hancke believe that the clear rejection of that abroad can be better than in Denmark, is dangerous: "At home you do not let the possibility of Borrelia open, if the ELISA test is negative. In my opinion a mistake. And we do not believe that there can be no overseas are better than us. It would be good with a little humility, 'says Klaus Hanke.

Comments:
Christian Frismodt says: Klaus Hansen unenlightened economic interests in a test involving the package insert says that it can not stand alone - and that some patients do not develop antibodies. Yet he maintains again and again that the test can stand alone - and that everyone develops antibodies before or since?! Several patients - and even doctors - have tried to illustrate that KH was on the wrong track regarding. ELISA test grades. But nobody has met professional curiosity - just a wall of defense (a right unlucky constellation when it is now published that KH receives royalties from the test, he blindly defends). An example: We have both U.S. and German video-recorded Spirochaete activity in patients who were positive with Immuno only test - and negative in the ELISA test. KH will not even watch these videos, because "you can not see the infection in the blood," he says. While he says: "We are working after all evidence-based" ! dear Klaus Hansen 1st infection can be seen in dark field microscopy in sufficient magnification. We can see Spirochaete activity - and the proportionality of the symptoms. This, coupled with immuno Blot, can identify which patients actually false negative! To see - and maybe learn - of filming, you have refused! (USAGE - and without basis). So you can actually keep the truth about Lyme full depth and breadth of life for years, when your views are narrow-minded, without professional curiosity and always protective of the ELISA test. 2nd In your own decanting report included an article describing the discovery of seronegative Borrelia for 10 year old skin changes (in the report manipulated this to be "acute skin lesion" instead. So it fits it's also more into the part - and to test). Uh, "evidence-based work," whom? You? Precisely this fact contradicts yours staunch assertion that all develop antibodies after max. 3 months!? 3.Du exclude evidence based research that has just mdsiger your claims and illustrate the ELISA weaknesses (Ex. Oksi JCM 1995, ... as found that> 50% late dyrkningsverificere de borreliosis pt, were seronegative, and Strle CID 2006, which found that> 70% late (> 6 months) dyrkningsverificere de NEURO-borreliosis caused by B. afzelii were seronegative . Do you work only evidence-based, when conclusions are to the benefit of your ELISA test?

Klaus Hansen, the consequence of your practice is that there are a large number of patients currently living with measly life with injuries from undiagnosed Lyme disease. Denmark need for new legislation (no economic interests of doctors in diagnostic tools. Especially not when they themselves simultaneously vejlleder on electoral test tool). And, Denmark needs, so, to revisit the Lyme diagnosis and treatment! Will our new Health Minister to make sure it qua the malpractices detected now?

3 May 2010, at. 02:11
Christian Frismodt says: It is also fantastic that Klaus Hansen, with his economic inflamed background, quotes the following: He also stresses that "many of the foreign borreliaklinikker are private and earn money from patients. It's not impossible to imagine that these clinics are interested in interpreting test results as positive. It's an almost divine lack of self-criticism, one must say! The new documentation, KH refers to come from doctors and researchers who have had the infection from close quarters (even in a family or circle) - and then vigorously sought the truth about Lyme disease - and THEN have opened clinics to help others searching for help! (For which help is available if diagnosed in time). But at home it is KH himself - and his students, who must respond to research on, for example. the weakness of its own tests. Who believes in incentives for this? - And thus a responsible and careful safeguarding of patients' interests?

Politicians rages over doctors 'forgotten conflicts'Information could yesterday reveal that the doctor who advises Danish physicians in the diagnosis of Borrelia even earn money on the test, he recommends. Politicians now want better oversight of doctors' conflicts of interest

Danish politicians want more transparency when doctors should recommend products to diagnose and treat diseases, such recommendations are not at the background of the individual physician's economic interest. Doctor Klaus Hansen is one of the doctors who advise all practitioners Danish doctors from using the ELISA test to diagnose the infection Borrelia. But what he forgot to say was that he even makes money on the test. It could INFORMATION yesterday show. Klaus Hansen advised the same time around Danish doctors to use the competing tests, Western Blot.In the so-called decanting report in which practitioners find information about treatment and diagnosis, there was until April 2010 is not abandoned, to Klaus Hansen himself has economic interests in the product.

Sophie Hæstorp Andersen, Health Committee of the Social Democrats believe that to be kept a watchful eye on the doctors' conflicts of interest:"There is probably a great many doctors who want to help with inventions and research and then take out a patent on them and thus have a conflict of interest. It is a natural consequence, but it is very problematic when it is notified to the public and practitioners, "says Sophie Hæstorp Andersen.

Must have consequences
Also, Jonas Dahl, who is health rapporteur for SF considers shameful example of the Danish health:"If doctors themselves can not figure out how to give up what is in accordance with the truth, so we must look at how to impose them a penalty. It is direct fraud. One possibility prospectively is to simply ignore the doctors here in Danish research, "says Jonas Dahl from SF.

SF will ask Health Minister's written questions in the proceedings"It is totally unacceptable that this can take place. We will beat SF very tough on it, as it ultimately may have important health implications for patients who do not get the best possible diagnosis, "says Jonas Dahl.

Caught napping
Danish People's Party health spokesman Liselott Blixt, will also further to the Information Ministry articles ask questions about the lack of transparency in the area:"I simply get so indignant about the fact that we constantly see overlap between medical recommendations and economic interests. For it goes beyond individuals, with the lack of transparency, "says Liselott Blixt from DF.S also believes that the example should trigger a debate in this area:
"It is beneath contempt - we'll have to ask the Board of Health on how it can go to Klaus Hansen did not record those interests here. If they sit there and sleep in hours, it is very problematic, "says Sophie Hæstorp Andersen, who nevertheless believes that the ultimate responsibility in this area rests with the health minister.

The Liberal Party's health spokesman Birgitte Josefsen, disagree in. She shoots the ball forward to the Board of Health, which she believes holds the ultimate responsibility:"It is a matter which the Board of Health must take care of. There are very strict rules that doctors must disclose their conflicts of interest. Therefore, they must intervene in this matter, "says Birgitte Josefsen.
-Has the Minister and the Government is not the ultimate responsibility in this area?"It is absolutely sovereign Board of Health's commitment. It is not the minister, because it is a technical agency, and this is a technical discussion. The rules are crystal clear - we're all about the National Board of Health must up a gear, "she says.

Vivi Kier from the Conservative opposition is just as concerned about the overlap between economic interests and recommendations, but generally confident that Denmark leads a sensible practices:"I will still ask the Ministry of Health, why we use the test here in Denmark. Whether it is because of price, or what it is about, "says Vivi Kier from Conservatives.

Like the S, SF, and DF Conservatives will not yet do anything about the situation than to ask the Department questions.

Health Protection Agency does not wish to participate in this article as decanting the report was released for IngentaConnect and not at their level. According to the Health Protection Agency itself, Klaus Hansen used not as an expert and therefore the Board did not consider his legal capacity problems.

Fact: The case brief
The Danish physician Klaus Hansen, Denmark's leading borreliaekspert, in collaboration with a handful of other doctors prepared a guidance paper for the diagnosis and treatment of Lyme back in 2006. In this regard, said Klaus Hansen, that he even makes money on the test, the ELISA test, he recommends Danish doctors to use.

Information has been in contact with a number of foreign experts, who recommend the competing Western Blot test, which they consider more accurate diagnoses. Klaus Hansen advises in the report back in 2006 Danish physicians to use this particular test.

To read the entire Information coverage of the story go to http://www.information.dk/231920

'No one in Denmark believed in me'Sadet Daniels was in 2006 diagnosed with stress - in fact she had Lyme disease, but the Danish test was negative. In Germany, she found Borrelia, but even if she had a positive test in hand, would the Danish doctors did not recognize her disease and she had to pay for treatment. Today she is well Sadet Daniels paid a high price both medical and economical for poor Danish Borrelia Diagnosis: 'I was even diagnosed by going to Germany, and I even paid £ 35,000 for my treatment there. It has many not allow. Most would probably rely on what their doctor says. It was only because I fought against the system - and indeed the money for treatment - that today I am in good health, 'says Sadet Daniels. Easter morning in 2006 woke up Sadet Daniels with pain throughout the body and one arm felt "heavy and dead '. Shortly after she was hospitalized at Bispebjerg Hospital where she underwent several tests. Doctors could not figure out what she failed, and she was subsequently diagnosed with stress. In fact, she had Lyme disease, and doctors also found that she had all the symptoms - also fit it with the fact that she had been bitten by a tick on a holiday in France a few months earlier. But the so-called ELISA test, which you use in Denmark, gave a negative result and therefore excluded the possibility doctors: "I was told that when the test was negative, it could not be Lyme. So I'm obviously on, "says Sadet Daniels.

Over the next two years, her condition got worse and worse. She went to a psychologist for his stress: "I was recommended to take antidepressant medication. This I refused. But after two years gave me after. It helped, of course not least, "says Sadet Daniels. She has her husband and children - and work at the time as a stewardess in SAS. But Sadet Daniels might soon ill join because the disease had begun to take real hard on her: Was as stunned "It was terrible. It felt as though I had tight rubber bands on arms and legs. I had big stains on the back, where I could not feel anything, even if you stuck a needle in. And left side of my face was completely stunned, "she says.

A late night hours at the computer took Sadet Daniels realized that the ELISA test can give false negative results - so that you can have Lyme disease, although the test is negative. Since there was no help from the Danish doctors, she went to a German private hospital that specializes in Lyme. This user Mon several tests, including the so-called Western Blot test. It was positive. Yet she could not get treatment in Denmark: Rescued by German hospital 'The Danish doctors did not believe that I had Lyme disease, even though I had a positive test from Germany. 'The test is not approved in Denmark', they said. So they would not give me any treatment.

In general, doctors in Denmark was very arrogant. They talked to me as if I did not understand something - and my doctor at Bispebjerg flatly rejected the possibility that the German tests were correct, "says Sadet Daniels. Therefore, paid herself 35,000 dollars to be treated with large amounts of antibiotics in the German private hospital: "There was a completely different mood in Germany. For the first time in the entire process I felt that one took me seriously. And the treatment was extremely effective. It is the best money I ever spent in my life. I dare not even think about what had happened if I had not come into treatment, "says Sadet Daniels, who is now almost well again. "I have always been in good shape and trained a lot and I feel that my muscles will never be as they once were. But I have full feeling in the body, and the genes I have today is nothing compared to how I felt when I was sick. "

Since Sadet Daniels had gotten over his Lyme disease, she contacted the Danish doctors and told them that she was healthy: "I thought that now would you then listen to me, but they still denied that I had been sick. If treatment with antibiotics had worked, it had to be psychosomatic, said my doctor at Bispebjerg. Because I had not Borrelia when I was tested negative. " The combination of the arrogant Danish attitude and lack of knowledge about the disease and diagnosing it is very dangerous, consider Sadet Daniels: "They trust blindly in test results, but you must not - so by the U.S. and Germany '. And it is according Sadet Daniels only because she was stubborn, she is now healthy: "It was myself who found out that the Danish test is unreliable. I was even diagnosed, and I found and paid even for my treatment. There are many who do not have the opportunity. Most would probably rely on what their doctor says. It was only because I had the strength to fight the system - and indeed the money for treatment - that today I am in good health. "

Information submitted Sadet Daniels' history of the Danish Borrelia expert Klaus Hansen, but he would not comment on a specific patient case. He says, however, that when we in Denmark have not always rely on foreign test results, it is because they are performed in private hospitals and earn money on treating a patient - and who therefore have an economic interest in having many positive results.
__._,_.___

TALK THE TALK

A recent published review from head of Lyme Reference unit talks the talk but does not walk the walk.

Curr Opin Infect Dis. 2010 Apr 17; [Epub ahead of print] Lyme borreliosis: current issues in diagnosis and management.O'Connell S.Lyme Borreliosis Unit, Health Protection Agency Microbiology Laboratory,Southampton University Hospitals Trust, Southampton, UK.

'SUMMARY:Greater efforts are needed to provide education for prevention and early diagnosis to avoid late complications. Further improvements in diagnostic tests would be welcomed. More research is required to assess the causes and management of post-Lyme symptoms.'

So what action to increase awareness, well so far not a lot, updating the HPA website is not exactly going to do much to raise awareness because first of all we need to be aware before even looking at the website.

Be tick aware when visiting the great outdoors

5 May 2010
The Health Protection Agency is advising people to take care when visiting areas where ticks are present, to prevent tick bites and reduce the risk of catching Lyme disease.
Late spring, early summer and autumn are peak times for tick bites and coincide with people venturing into the great outdoors for the warmer weather.
One of the measures the Health Protection Agency (HPA) has taken this year to raise awareness of tick bites has been to provide advice to The Royal Parks for their leaflet on Lyme disease. The Royal Parks are responsible for looking after 5000 acres of historic parkland in London, including Richmond Park and Bushy Park. Several of these parklands have large deer herds, one of many animals that can carry the hard-bodied tick which can transmit Lyme disease.
The Royal Parks leaflet warns of the dangers of tick bites and what visitors should look out for. Leaflets are available on the HPA and The Royal Parks websites, with paper copies available at the information centres at Richmond Park and Bushy Park.
Ticks can be found in forests, heaths, moorland areas and in suburban parkland. Any area, large or small, in which ticks are present should be regarded as having a potential risk of Lyme disease. In recent years according to HPA figures there have been around 800 laboratory-confirmed cases reported annually in patients from England, Wales and Northern Ireland, with an estimated 2000 to 3000 cases a year in total, (this includes cases that are diagnosed without the need for laboratory tests and cases that are so mild that people do not feel the need to consult a doctor).
The majority of Lyme disease cases reported in the UK are acquired here rather than overseas, often through recreational activities including walking, trekking and mountain-biking. Areas where the infection has been acquired in the UK include popular holiday destinations such as Exmoor, the New Forest, the South Downs, parts of Wiltshire and Berkshire, Thetford Forest, the Lake District, the Yorkshire moors and the Scottish Highlands. Most cases are reported as coming from the southern counties of England, especially from the south-east and south-west.
Ticks are very small (about the size of a poppy seed), and can easily be overlooked, so it is important to check regularly. Most ticks do not carry the infection. If one is found it should be removed promptly, as infected ticks are unlikely to transmit the organism if they are removed in the early stages of attachment. Ticks can be removed with tweezers or special tick hooks, pulling gently upwards away from the skin.
To minimise the risk of being bitten by an infected tick:
Wear appropriate clothing in tick-infested areas (a long sleeved shirt and long trousers tucked into socks). Light coloured fabrics are useful, as it is easier to see ticks against a light background
Consider using insect repellents, e.g. DEET-containing preparations,
Inspect skin frequently and remove any attached ticks
At the end of the day, check again thoroughly for ticks, especially in skin folds
Make sure that children's head and neck areas, including scalps, are properly checked
Check that ticks are not brought home on clothes
Check that pets do not bring ticks into the home on their fur

Notes for editorsFor further information please contact the HPA Centre for Infections press office on 020 8327 7097/6217/7080For further information about the symptoms of Lyme borreliosis and tick bite prevention visit our website: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/LymeDisease/Lyme disease leaflets produced in conjunction with The Royal Parks are available at: http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1271256716650Lyme disease figures are available athttp://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/LymeDisease/EpidemiologicalData/
Members of the public should seek advice about their specific travel health needs from their GP or local travel clinic.

http://www.hpa.org.uk/NewsCentre/NationalPressReleases/2010PressReleases/100505Betickaware/

' Further improvements in diagnostic tests would be welcomed.'

Is that someone acknowledging tests can miss cases of Lyme Disease? Trinity Biotech the makers of the test kits used in the UK acknowledges that a negative test does not rule out the possibility of Lyme Disease. So why are doctors led to believe it does?

'More research is required to assess the causes and management of post-Lyme symptoms.'
Durr!
well yes saying is not doing, sadly and meanwhile can we be treated on our response whilst the science is still evolving?

UK PETITION PLEASE HELP

Lyme patients and their carers, families and friends are organising a petition to present to the UK government, asking that clinics and specialists dedicated to the treatment of Lyme and other tick-borne diseases may be established. There needs to be more research and monitoring of tick-borne infections, and more skilled treatment for those afflicted.The infections transmitted by ticks are: Borreliosis (Lyme), Babesia, Bartonella, Rickettsia, Anaplasmosis, several viruses and possibly several other as yet undetermined species/parasites.Tick-borne diseases are increasing throughout Europe. One example: Sweden has some regions where there have 400 cases per 100,000 of the population. This year, 2010, a petition by Dutch Lyme patients has collected 65,000 signatures which they are presenting to their parliament because they believe there may be as many as 500,000 people in the Netherlands, out of a population of 17 million, afflicted by the disease. We are hoping to collect many tens of thousands of signatures to have an effect on our government. Even if it takes years, we will eventually speak with enough voices behind us to be able to insist that the government and the health agencies tackle this problem.By collecting signatures, we will at the same time raise awareness of the dangers of tick-borne infections and thereby prevent many thousands of people becoming ill.How has this situation arisen, that people are infected and chronically ill and yet receive only a short course of antibiotics? There are many questions that demand answers, but which will only get answered when there is a huge increase in awareness of Lyme and the co-infections carried by ticks.

http://uklymepetition.atspace.com/index.htm

I do hope those of you who visit my blog will consider signing this petition and asking friends and family to do so too.
Although it asks for a donation it is not necessary to donate in order to add your names to the petition.

http://uklymepetition.atspace.com/our_petition.htm


Our petition

We draw your attention to Lyme disease, or borreliosis, which is increasing in incidence dramatically across Europe and the USA. Lyme disease is a real and present danger for those working or recreating in woods, parklands or even their own back gardens. We ask that the government acts now to increase public awareness of this tick-borne infection, that better diagnostic tests are designed, that specialised treatment is developed to help the many thousands suffering from the chronic effects and that the disease be made notifiable.

Every year tens of thousands of European and UK citizens contract Lyme disease and because of the difficulties with awareness and testing, many go undiagnosed and untreated. Those who receive late or inadequate treatment become partially or completely disabled, with a high cost to themselves and to society. In some cases the disease can be fatal. It is far better to tackle this problem before it gets worse; in some areas it has already reached epidemic proportions. Resources must therefore be devoted as soon as possible to improve diagnosis, treatment and public safety.

Specific demands:

1: That Lyme borreliosis be made a notifiable disease, so that the true incidence becomes apparent.
2: That better methods are actively explored, to test for and diagnose both acute and chronic infections..
3: That doctors are trained in the treatment of borreliosis and other tick-borne infections. Given the number of patients who may now be infected, we ask that special clinics are established where the diverse range of the effects of the disease can be acknowledged and treated.
4: That treatment is extended for as long as necessary, and to include the use of high dose, combination or long-term antibiotics, especially in those patients who have been ill for a long time. Even in those patients who appear to have recovered, a 5-year follow-up would be advisable to monitor the condition.
5: That medical schools and practising physicians are made aware of the research and latest knowledge in diagnosis and treatment of Lyme disease, as well as the other emerging infectious diseases carried by arthropods which may cause co-infections in patients with borreliosis. 6. That all government agencies for the Environment, Health, Sport and Tourism use their resources to make the general public in the UK aware of the potential risks from tick bites and the best ways of avoiding them.


Background Information

The first outbreak of modern-day borreliosis disease occurred in the small town of Old Lyme, Connecticut in the mid 1970s. Since then, in the US and Canada, it has become the fastest growing infectious disease, with more cases than AIDS. In Europe, countries such as Germany, Norway and the Netherlands have reported that cases have been doubling every few years. This year, 65,000 Dutch people have signed a petition to their government; they estimate that up to half a million are suffering from chronic Lyme in their country, and they know that tens of thousands are newly-infected each year.

The numbers are likely to be as bad as this in Britain, but because surveillance, diagnosis and blood tests are all proving inadequate, many Lyme patients end up being told they have Fibromyalgia, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis and may suffer from a host of other chronic symptoms which can manifest as arthritis, bipolar disorder, palpitations and other heart arrhythmias, sudden onset schizophrenia, polymyalgia rheumatica, sudden weakness or even paralysis, heart failure, stroke, back pain, skin lesions etc. Lyme has been shown to pass from a mother to the unborn child and has caused stillbirths and birth defects.

When diagnosed early, antibiotic treatment stops the disease, but if treatment is inadequate, the bacteria may lie dormant, as in TB and syphilis, only to reoccur months or years later. Initial infections are missed because tick bites are painless, and the characteristic bull’s eye rash, called Erythema Migrans or EM rash, only occurs in 50% of patients and may be atypical and hidden from view or even misdiagnosed as ringworm or eczema. Other initial symptoms, such as chills, ‘flu-like fevers and joint aches and muscle pains, may be dismissed by patients and doctors.

While the disease is deemed to be rare, many cases go undiagnosed, and this will perpetuate the myth that Lyme is rare. Many patients will visit several specialists before Lyme is suspected, and this late diagnosis reduces the success with short antibiotic treatment and increases the chances of chronic, difficult to treat symptoms. When patients are undiagnosed, and untreated, the official surveillance statistics are not giving a true picture of how many people have been infected, which makes a strong case for making Lyme a notifiable disease, even though it is not as highly contagious as are other notifiable diseases.

Diagnosis is difficult. It is normally done by testing for the presence of antibodies for the Borrelia bacteria in the blood. Across Europe there is no real standardisation of tests and most of them are based on looking for 1 species, whereas there are many different species of Borrelia causing Lyme disease. Borrelia bacteria can avoid and suppress the immune system, so that patients, some of them the most severely ill, are not making antibodies. Also, there are many documented cases of other bacteria and viruses being passed on in tick bites, and this complicates the clinical picture and the treatment. Some other diseases, e.g. TB, are difficult to diagnose, and scientists sometimes take many weeks culturing the TB bacteria in the laboratory. Given the serious and long-term effects of Lyme, culture and other methods should be considered, even though they are at first sight costly and time-consuming.

Treatment of Lyme and the possible co infections carried by ticks is known to be far from straightforward. Scientific research showed as long ago as 1988 that the bacteria could survive antibiotic treatment so that the patient might relapse afterwards. There are problems in that some people bitten by ticks carry the infection without showing symptoms, so that the diagnosis and decision to treat has to be based on clinical expertise. As in TB, extended treatment with combined or pulsed antibiotics has been shown to be successful, but there is controversy over use of prolonged antibiotic therapy in borreliosis, stemming perhaps from the cost of the medicine and the cost of care during treatment, and from not knowing the end-point of treatment.

The ramifications of not solving this problem, and leaving people to suffer, are far-reaching, with serious implications for the public’s confidence in medicine and the health services, as well as the cost to society of the increasing numbers of people disabled by Lyme disease.

http://uklymepetition.atspace.com/our_petition.htm

JUVENILE RHEUMATOID ARTHRITIS

Juvenile Rheumatoid Arthritis and Juvenile Arthritis are both subjects I have posted about here and here writing Juvenile Arthritis and Juvenile Rheumatoid Arthritis in the search box on my right will show other posts on this subject.

In summary the incidents of Arthritis and Juvenile Rheumatoid Arthritis in UK and USA are increasing yet because of the problems over diagnosis and treatment of Lyme disease children and adults are not adequately assessed to see if their symptoms could be as a result of a bacterial infection Lyme Disease.

Research shows that blood tests can miss 50% of cases that's even if the child is tested for Lyme Disease.

The Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Details of presentations are being posted on the CALDA blog click here

Especially interesting is the speech by Diane Blanchard, Co-President of Time for Lyme, who addressed the issue of scientific bias and the importance of separating fact from opinion. She also emphasized that it was important to listen to patients drawing the parallel to the discovery of Lyme by Polly Murphy, a mother in a local community. Read her speech here

Thank you Diane for your informative speech lets hope it doesn't fall on closed ears.

I suffered chronic painful arthritis and muscle weakness and was put on steroids, yes steroids did reduce the inflammation and enable me to continue part time work but my health problems continued to deteriorate. Eventually my GP considered the possibility of Lyme disease an illness grossly overlooked and marginalised here in the UK. You can read my story in the right hand column but suffice it to say that on long term antibiotics I have my health back and my life and have no pain or disability.

Many illness are ASSUMED to be auto immune and patients rather too quickly given steroid treatments, if infact the illness is a bacterial infection then even long term antibiotics can be far less harmful than steroids and yet because of the biased outdated views doctors are mis led into believing Lyme Disease tests are 100% accurate when in fact 50% is nearer the mark.

Lyme Disease was named after a town Old Lyme in Connecticut, Polly Murray was the person who alerted the Health Authorities because of an increased incidence in Juvenile Rheumatoid Arthritis in a small area in her town.

How come nearly 30 years later doctors are not paying attention to the evolving science on this complex disease?

Well the answers are there in part if you have time to look at the many charity websites links found on the top right of my side bar, but if you read nothing else do read what Diane Blanchard has to say.