Saturday, 29 May 2010
Thursday, 27 May 2010
My story is similar to many thousands of other patients and their treating specialist doctors World Wide. We are the living proof that Chronic Lyme Disease does exist, how many more thousands must suffer before medicine starts to pay attention to what is going on with the politics in the IDSA which results in their yet again flawed and biased views.
Thank you Daniel Cameron for this well researched article something that should be read by anyone with my symptoms because their doctors are unlikely to take the time to make their own enquiries.
Interdisciplinary Perspectives on Infectious DiseasesVolume 2010 (2010), Article ID 876450, 4 pagesdoi:10.1155/2010/876450
Proof That Chronic Lyme Disease Exists
Daniel J. Cameron
Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY 10549, USA
Received 11 December 2009; Accepted 26 March 2010
Academic Editor: Guey Chuen Perng
Copyright © 2010 Daniel J. Cameron. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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 posttreatment 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%, ) .
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 year20 to 25 percent of all families [in Connecticut] have had at least one person diagnosed with Lyme Disease ever andthree 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. N. A. Shadick, C. B. Phillips, E. L. Logigian, et al., “The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study,” Annals of Internal Medicine, vol. 121, no. 8, pp. 560–567, 1994.
2. E. S. Asch, D. I. Bujak, M. Weiss, M. G. E. Peterson, and A. Weinstein, “Lyme disease: an infectious and postinfectious syndrome,” Journal of Rheumatology, vol. 21, no. 3, pp. 454–461, 1994.
3. M. S. Klempner, L. T. Hu, J. Evans, et al., “Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease,” New England Journal of Medicine, vol. 345, no. 2, pp. 85–92, 2001.
4. B. A. Fallon, J. G. Keilp, K. M. Corbera, et al., “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy,” Neurology, vol. 70, no. 13, pp. 992–1003, 2008.
5. L. B. Krupp, L. G. Hyman, R. Grimson, et al., “Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial,” Neurology, vol. 60, no. 12, pp. 1923–1930, 2003.
6. M. S. Klempner, “Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease,” Vector Borne and Zoonotic Diseases, vol. 2, no. 4, pp. 255–263, 2002.
7. D. J. Cameron, “Clinical trials validate the severity of persistent Lyme disease symptoms,” Medical Hypotheses, vol. 72, no. 2, pp. 153–156, 2009.
8. X. Zhang, M. I. Meltzer, C. A. Pena, A. B. Hopkins, L. Wroth, and A. D. Fix, “Economic impact of Lyme disease,” Emerging Infectious Diseases, vol. 12, no. 4, pp. 653–660, 2006.
9. G. P. Wormser, R. J. Dattwyler, E. D. Shapiro, 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, vol. 43, no. 9, pp. 1089–1134, 2006.
10. N. A. Shadick, C. B. Phillips, O. Sangha, et al., “Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease,” Annals of Internal Medicine, vol. 131, no. 12, pp. 919–926, 1999.
11. E. Hodzic, S. Feng, K. Holden, K. J. Freet, and S. W. Barthold, “Persistence of Borrelia burgdorferi following antibiotic treatment in mice,” Antimicrobial Agents and Chemotherapy, vol. 52, no. 5, pp. 1728–1736, 2008.
12. H. Yrjänäinen, J. Hytönen, K.-O. Söderström, J. Oksi, K. Hartiala, and M. K. Viljanen, “Persistent joint swelling and borrelia-specific antibodies in Borrelia garinii-infected mice after eradication of vegetative spirochetes with antibiotic treatment,” Microbes and Infection, vol. 8, no. 8, pp. 2044–2051, 2006.
13. J. J. Halperin, E. D. Shapiro, E. Logigian, 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, vol. 69, no. 1, pp. 91–102, 2007.
14. G. P. Wormser, R. Ramanathan, J. Nowakowski, et al., “Duration of antibiotic therapy for early Lyme disease: a randomized, double-blind, placebo-controlled trial,” Annals of Internal Medicine, vol. 138, no. 9, pp. 697–704, 2003.
15. H. M. Feder Jr. and D. L. Whitaker, “Misdiagnosis of erythema migrans,” American Journal of Medicine, vol. 99, no. 4, pp. 412–419, 1995.
16. M. C. Reid, R. T. Schoen, J. Evans, J. C. Rosenberg, and R. I. Horwitz, “The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study,” Annals of Internal Medicine, vol. 128, no. 5, pp. 354–362, 1998.
17. M. Vrethem, L. Hellblom, M. Widlund, et al., “Chronic symptoms are common in patients with neuroborreliosis—a questionnaire follow-up study,” Acta Neurologica Scandinavica, vol. 106, no. 4, pp. 205–208, 2002.
18. A. C. Steere, E. Taylor, G. L. McHugh, and E. L. Logigian, “The overdiagnosis of Lyme disease,” Journal of the American Medical Association, vol. 269, no. 14, pp. 1812–1816, 1993.
19. A. L. Hassett, D. C. Radvanski, S. Buyske, S. V. Savage, and L. H. Sigal, “Psychiatric comorbidity and other psychological factors in patients with “chronic Lyme disease”,” American Journal of Medicine, vol. 122, no. 9, pp. 843–850, 2009.
20. D. J. Cameron, “Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients,” Medical Hypotheses, vol. 72, no. 6, pp. 688–691, 2009.
21. S. Silverman, E. M. Dukes, S. S. Johnston, N. A. Brandenburg, A. Sadosky, and D. M. Huse, “The economic burden of fibromyalgia: comparative analysis with rheumatoid arthritis,” Current Medical Research and Opinion, vol. 25, no. 4, pp. 829–840, 2009.
22. A. E. Clarke, J. M. Esdaile, D. A. Bloch, D. Lacaille, D. S. Danoff, and J. F. Fries, “A Canadian study of the total medical costs for patients with systemic lupus erythematosus and the predictors of costs,” Arthritis and Rheumatism, vol. 36, no. 11, pp. 1548–1559, 1993.
23. G. D. Ebel, E. N. Campbell, H. K. Goethert, A. Spielman, and S. R. Telford III, “Enzootic transmission of deer tick virus in new England and Wisconsin sites,” American Journal of Tropical Medicine and Hygiene, vol. 63, no. 1-2, pp. 36–42, 2000.
24. http://www.ct.gov/ag/lib/ag/health/0129lyme.pdf, p. 290, 2008.
25. D. J. Cameron, “Generalizability in two clinical trials of Lyme disease,” Epidemiologic Perspectives and Innovations, vol. 3, article 12, 2006.
26. J. J. Halperin, “Prolonged Lyme disease treatment: enough is enough,” Neurology, vol. 70, no. 13, pp. 986–987, 2008.
27. B. H. Skogman, S. Croner, M. Nordwall, M. Eknefelt, J. Ernerudh, and P. Forsberg, “Lyme neuroborreliosis in children: a prospective study of clinical features, prognosis, and outcome,” Pediatric Infectious Disease Journal, vol. 27, no. 12, pp. 1089–1094, 2008.
28. B. J. Bloom, P. M. Wyckoff, H. C. Meissner, and A. C. Steere, “Neurocognitive abnormalities in children after classic manifestations of Lyme disease,” Pediatric Infectious Disease Journal, vol. 17, no. 3, pp. 189–196, 1998.
29. M. Vázquez, S. S. Sparrow, and E. D. Shapiro, “Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease,” Pediatrics, vol. 112, no. 2, pp. e93–e97, 2003.
Wednesday, 26 May 2010
'One bite from this insignificant looking insect can lead to a disease that can take years to shake off'
Published Date: 25 May 2010
By Ruth Walker
SIX years after an innocent game in the Scottish countryside resulted in excruciating headaches, unbearable fatigue, gynaecological problems, tremors and even a fear that she might be dying, Janey Cringean is almost – ironically – out of the woods.
But along the way she has faced ignorance and disbelief from doctors and a Herculean battle to get the treatment that could cure her.
Cringean, a 48-year-old computer software consultant from Livingston, had Lyme disease, caused by a tiny tick bit she received while playing hide and seek with her niece and nephew in Beecraigs Park, West Lothian, in 2004. "A week later I got a spot on my hip and two days after that I woke up with the most awful vomiting that went on all day. It was endless. It felt like flu. I was really weak and shivering all the time."
Within a few days she was feeling better, but the rash – the size of a small coin – didn't budge. Her GP prescribed steroid creams and, when those didn't work, it was frozen off by a dermatologist. However, it kept reappearing, with accompanying pain. "I developed a multitude of symptoms, including unbelievable headaches, and bad pelvic pain. A year later I was almost incapable of getting out of bed. There were quite a few times I'd be lying thinking, I wonder if this could be the night I die.
"This is Tick Awareness Week (24-30 May), the start of the time of year we are most likely to be bitten. And although the figures are relatively low, we shouldn't dismiss the disease as irrelevant. Indeed, the rates of Lyme are significantly higher in Scotland than the rest of the UK, with positive test rates soaring from 86 in 2004 to 285 in 2008, the most recent available figures, though the number of actual cases could be much higher.
"It is a difficult disease to diagnose," says Stella Huyshe-Shires, chairman of Lyme Disease Action.
"It can look like a lot of rheumatic and neurological conditions and the blood test is not infallible. It's also a disease very few doctors have been aware of so if they see typical symptoms they don't recognise it.
"Caused by the bite of an infected tick – a brown/black eight-legged insect that can be no more than a tiny dot - it can be caught by anyone spending time outdoors, especially in long grass or woodland areas, from foresters and farmers to golfers, gardeners, walkers and orienteers. "I caught it in my garden," says Huyshe-Shires.
"The tick attaches to you and, as it does, it injects an anaesthetic so you don't feel the bite. You tend not to notice it for about 24 hours then the anaesthetic starts to wear off and you get a little itch.
"It's a tiny little thing – it can be as small as a full stop on a page. You can take it off but must not cover it with oil, burn it with a cigarette or do anything to put it under stress or it might regurgitate its stomach contents into you, which is the last thing you need! Pull it out with a fine pair of tweezers or a tick removal tool, which you can get from any vet.
"At this stage, there's no point in panicking because you may not be infected, but if you start seeing symptoms – anything from headaches, stiff neck and muscle pain to sensitivity to sound and light – you should go straight to your doctor.
"You can get cold or hot and have sweats or a kind of facial palsy," adds Huyshe-Shires. "You may get a rash, not necessarily at the site of the bite."
The disease can be treated by antibiotics, but diagnosis often takes time. "In a lot of cases people have gone to their GP and they've said it can't be Lyme disease because we don't have it in this country," says Huyshe-Shires. "I was three years before I was diagnosed."
After repeated requests, Cringean was finally tested for Lyme, and though the results were negative, she was prescribed massive doses of antibiotics – twice the level for anthrax poisoning. Five weeks later, she started seeing an improvement. But the irony is that such a high dose of antibiotics could cause organ failure. "It's terrifying," she says. "I don't know what the future holds.""I've been on antibiotics for more than three years. On the two attempts I made to come off I had such a severe return of symptoms it felt like falling off a cliff. So I'm terrified of coming off them, yet terrified of keeping on them. ."
As always, prevention is better than cure. Spray your trousers with a Deet-type product, says Huyshe-Shires. "And tuck your trousers into your socks, then keep away from long grass. Then be aware and check yourself afterwards. Brush off your clothes outside before you come indoors. Look for ticks in places like the groin and behind knees. They'll go for a slightly protected place – they tend to crawl up – and with children, they can get up to the hairline."
To find out more about the disease see www.lymediseaseaction.org.uk, and for information on dealing with ticks, see www.stopthetick.co.uk• This article was first published in Scotland on Sunday on 23 May
Monday, 24 May 2010
Lyme disease tricky to diagnose
Number of cases may be under-reported because blood-testing not always foolproof
By Florence Loyie, Edmonton Journal May 23, 2010 10:00 PM
The number of Albertans with Lyme disease may be under-reported because the illness is often misdiagnosed, says an Edmonton board member of the Canadian Lyme disease Foundation.
Part of the problem is infectious disease specialists won't treat for suspected Lyme disease unless they have a positive blood test from an approved laboratory, said Janet Sperling, who is also a University of Alberta entomologist, and co-author of a submission to The Canadian Entomologist on the presence of Lyme disease ticks in Alberta.
Sperling said many local cases go undiagnosed partly because she believes local labs give out too many false negatives.
In 2005, her oldest son, Ed, then 15, contracted Lyme disease, likely on a family vacation in California. He was tested for a number of diseases ranging from Parkinson's to epilepsy by local doctors. Three tests done in Alberta for Lyme disease came back negative.
When Sperling and her husband sent Ed's blood to a California lab, it came back positive for Lyme disease. But local doctors remained skeptical even though Ed's condition continued to deteriorate, she said.
It was not until late 2005 that a doctor reluctantly put Ed on three months of intravenous antibiotics, followed by six months of oral medication. Ed has since made a full recovery.
Between 1992 and 2006, 19 cases of Lyme disease were reported in Albertans, all who had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Sperling said her son is not listed among the Alberta statistics even though the California lab gave him a positive result and the antibiotic regime cured him. That's because the provincial health office insists a blood test to come back from the laboratory with five positive indicators to define Lyme disease. The European standard requires three.
The disease is rarely fatal in humans but can cause fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
The first sign is often a circular rash, called a bull's-eye rash, where the tick has bitten and burrowed. The ticks start out the size of a freckle, but can balloon up to the size of a grape after a bloody meal.
In 2007, provincial health officials confirmed the western blacklegged arachnid had been found in Alberta. Unlike Alberta's moose tick and other local varieties, the western blacklegged arachnid is known to carry the bacteria that causes Lyme disease.
Last week, Alberta's chief veterinarian, Dr. Gerald Hauer, said he was informed that three ticks found by a provincial surveillance project were positive for the bacteria. One tick was found in the Ardrossan area, just east of Edmonton. The other two were found near Calgary and High River. All were collected in the last three weeks. They were tested at the Public Health Agency of Canada's Winnipeg lab.
Sperling said she disagrees with the government's finding that Alberta's first identified Lyme disease carrying tick was found in 2007. "There had been a positive (Lyme disease) tick found in Grande Prairie in 1994," she said, adding she has supporting documentation. Sperling said the foundation has waged an awareness campaign for years to get the message out that you can contract Lyme disease anywhere in Canada, including Alberta. "Alberta has been a particularly tough spot to get the diagnosis for humans," Sperling said. "This is really strange because the vets don't seem to have a problem with saying we recognize we have Lyme disease in Alberta."
Linda Laidlaw's oldest daughter, Xian, contracted Lyme disease as a four-year-old, but was never diagnosed in Canada. "We had to travel to the U.S. for diagnosis and treatment ... and spent over $50,000 to help her recover, none of which has ever been reimbursed," Laidlaw said in an e-mail. "At the height of her illness, I was told that she had an incurable degenerative neurological illness that was likely a rare form of late onset autism or an unknown genetic illness and that there was nothing more her doctors could do.
"By then she'd been ill for about six months. She had lost her ability to communicate and her cognitive skills as well as suffering from myriad physical problems," she said.
Her daughter spent a month in the Stollery Children's Hospital being tested, although never for Lyme disease, and was seen by over 20 pediatric specialists. She also spent three weeks as an in-patient in the Royal Alexandra's secured child psychiatric unit.
Laidlaw said she was sitting in the hospital reading The Journal when she read a story about Ed Sperling and decided to contact the family.
Once Xian began receiving antibiotic treatment for Lyme disease and tick-borne co-infections, her daughter began to get better and continues to improve daily. Xian is now six years old. "If only one of the many doctors who had seen her had known to diagnose Lyme or even just suggested it to me as a possibility, my daughter and our family would have been spared from the ensuing years of pain and difficulty, from which we are still trying to recover," she said.
Laidlaw said she is not sure where Xian contracted the disease but it was either in Alberta or British Columbia because she has never travelled to any U.S. areas where the ticks are found. "The irony of this story is if I had a dog with Lyme disease, I would be more likely to get treatment for it in Alberta than for my child," Laidlaw said.
Sperling said the foundation's goal is to convince the infectious disease medical community that even if a blood test comes back negative for Lyme disease, the patient should begin an antibiotic regime based on their symptoms and history.
Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, said in a November 2009 news release that the organization's doctors are at the forefront of antibiotic resistance issues and are confronting the overuse and misuse of antibiotics.
"We must consider the potential serious side-effects of inappropriate antibiotic use for unproven (Lyme disease) including: Clostridiumdifficile-associated disease, life-threatening drug interactions and antibiotic resistance," Evans said in the statement, released in response to a CTV W5 investigation into diagnosis of Lyme disease in Canada.
Evans added that in 2005, the U.S. Centres for Disease Control and Prevention questioned the validity of some American laboratory tests for Lyme disease that use a diffe-ent standard for interpretation. The tests costs hundreds of dollars and are billed directly to the patient.
"This is cause for skepticism," Evans said. "Furthermore, some American doctors who claim to be (Lyme disease) specialists do so without any requirement or regulatory authority to verify their credentials or any established standards for claiming such a title."
Dr. Andre Corriveau, Alberta's chief medical officer of health, said last week he was alerting the medical officers of health throughout the province of the three ticks recently found. Corriveau said anyone spending time outdoors should wear insect repellent, long pants and enclosed shoes when walking in tall grass, woods or bush.
It is time there was more awareness in our National Press here in the UK too.
An earlier post click here
gives a link into a W5 program
Also an earlier post Research by the Sperlings click here
Abstract: Lyme borreliosis (LB), also known as Lyme disease, is emerging as a serious tickborne illness across Canada. More than three decades of research on LB in North America and Europe have provided a large, complex body of research involving well-documented difficulties at several levels. However, entomologists are well situated to contribute to resolving some of these challenges. The central pathogen in LB, the spirochete Borrelia burgdorferi Johnson et al., includes numerous genospecies and strains that are associated with different disease symptoms and distributions. The primary vectors of LB are ticks of various Ixodes Latreille species (Acari: Ixodida: Ixodidae), but questions linger concerning the status of a number of other arthropods that may be infected with B. burgdorferi but do not transmit it biologically. A variety of vertebrates may serve as reservoirs for LB, but differences in their ability to transmit LB are not well understood at the community level. Persistent cystic forms of and immune system evasion by B. burgdorferi contribute to extraordinary challenges in diagnosing LB. Multiple trade-offs constrain the effectiveness of assays like ELISA, Western blot, polymerase chain reaction, and microscopic visualization of the spirochetes. Consequently, opportunities abound for entomologists to contribute to documenting the diversity of the players and their interactions in this devilishly complex disease.
Thursday, 20 May 2010
In the UK I have been in touch with several parents of young children whose children have fallen between the cracks.
I visited one whose daughter had such terrible head pain that it caused her to scream I was there during one of her episodes which was truly heartbreaking to hear. She had had three major operations on her head including one at the base of her brain in order to control these symptoms and had been ill since she was 15 . Now 10 years later she still suffers and has other symptoms of Lyme including Arthritis.
Her Neuro consultant said we would look a bunch of charlies if it turned out to be Lyme disease.
Well it did and yet even so the denial is still causing problems over treatment.
The saddest case is that of Lewis Jeynes a perfectly normal happy little boy at 2 who was bitten in France whilst holidaying there. Gradually his health deteriorated so that he can no longer use his arms, legs, is tube fed and has seizures. Diagnosed with Lyme Disease and some improvements on antibiotics but still his NHS doctors are in denial. I do hope they can get some specialist attention soon.
One mother had been told there was nothing wrong ( the tests showed this)and if she persisted with her enquiries privately they would be looking at MBP.
Specialist Lyme Doctors are finding in children symptoms can present as Obsessive Compulsive Disorder, Attention-deficit Hyperactivity Disorder or Autism.
Others parents have taken their children to the USA to see the only paediatric doctors available who know enough about Lyme Disease.
It is not safe for them to talk openly about their case because of the very real threat of MBP so I will post something I found on Google Alerts today which so highlights what many parents are experiencing.
What of the children that never get diagnosed ?
Sentimental Journey Sophie's suffering
about 24 hours ago
The daylight was fading from the late winter sky when the phone began ringing.
"Can you talk to a woman from New York who needs help?" my dear friend, Marjorie began. "You see, my sister is the family nurse. Their little girl is very sick with Lyme disease."
How well I knew that scenario.
A few minutes later, I was on the phone with Mindy, a mother I'd never met, whose child, Sophie, was crying desperately in the background. That's when Mindy began telling me her story.
The first tick bite seemed unimportant back in 2008. A second tick found in Sophie's scalp a few months later was not unusual either. Their family physician checked the child and said not to worry. After all, the eastern seaboard is well-known for its tick population. Sophie seemed OK after the two occurrences. Sure there was a rash, but she seemed fine. Until months later when Sophie began having headaches that left her doubled over. Until she was suddenly unable to walk. What happened to their once-healthy child?
Mindy began seeking help immediately, traveling from doctor to doctor. I was not surprised that even in New York state, where Lyme disease and other tick-borne illnesses are more easily recognized, little connection was made between the neurological symptoms Sophie was experiencing and the reported tick bites. One doctor ran Lyme tests when every other test came back negative. The preliminary Elisa test came back only mildly positive. The Western Blot came back inconclusive. But by then, little Sophie was neurologically impaired. She was admitted to a psych unit when the headaches left her screaming, when she could no longer use her legs.
I was called to comfort Mindy, because only a mother knows another mother's pain.
By the time we spoke, Mindy had done her homework. A medical follow-up with an ILADS physician had been scheduled. An antibiotic had been started.
"What can I do to help Sophie?" Mindy inquired, her voice breaking.
"Follow your instincts," I began. "Your child is gravely ill. Don't stop till you have answers. And always pray to God for guidance. He will be there when everyone else walks away." I could hear Mindy crying. Her daughter had finally settled. I wiped away a tear, remembering.
Mindy and I established a routine in the next few months, on the phone and then via e-mail. We told each other our stories. The Lyme-literate doctor she consulted confirmed the tick-borne illness. After all the doctors they saw, even several neurologists, one finally listened. One properly diagnosed the child. With the strange symptoms accompanying the disease, no two cases are ever the same.
Mindy told me about the day Sophie was infected several years ago. How her hairdresser found the first tick. Her husband found the second. I thought about how that insidious, invisible pathogen slowly but surely integrated itself in Sophie's small body, how as the bacterium multiplied, the subtle symptoms were dismissed until the neurological damage could no longer be ignored.
The last time Mindy wrote, Sophie had taken a few tentative steps in physical therapy. The headaches were finally abating. The treatment: a long-term antibiotic regimen.
"Sophie laughed today," Mindy told me in that last e-mail.
I knew exactly what Mindy was thinking. Sophie's laughter, a sound she once took for granted, had become the most precious sound in the world.
Remember, May is Lyme Awareness month in Ohio. This disease has grown to epidemic proportions. Most patients don't remember seeing a tick bite or rash. But if you fear infection, contact an ILADS physician for treatment today.
Wednesday, 19 May 2010
The makers of the test kits which are used in the UK are Trinity Biotech.
'The Trinity Biotech EU Lyme + VlsE IgG Enzyme Immunoassay (EIA) Test System is a qualitative test intended for use in the presumptive detection of human IgG antibodies to Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi(B-31) including the VlsE Protein in human serum. This EIA system should be used to test serum from patients with a history and symptoms of infection with Borrelia. All positive and equivocal specimens should be re-tested with a highly specific, second-tier test such as Western blot. Positive second-tier results are supportive evidence of infection with Borrelia. The diagnosis of Lyme disease should be made based on history and symptoms (such as erythema migrans), and other laboratory data, in addition to the presence of antibodies to Borrelia afzelii, Borrelia garinii and B. burgdorferi(B-31) including the VlsE protein. Negative results (either first or second-tier) should not be used to exclude Lyme disease.'
Here are 103 studies on Seronegativity from Lyme Info a very useful resource.
At the IDSA review hearing Steven Phillips presented 25 studies on Seronegativity and Persistent infection after courses of antibiotic treatment. Other presenters questioned the over reliance on tests that some research shows can miss up to 50% of cases.
Details of presentations can be found on ILADS website here
Interestingly of the IDSA review panel 4 out of 8 of that panel had a problem over the blood tests yet what did the IDSA do, rubber stamp the guidelines and disregard the 4 Doctors who were concerned about the science supporting that blood tests could be nearly 100%. The Calda Blog sets out the problems well.here
My symptoms were Arthritis and muscle weakness mainly but also tingling and twitching in my hands feet, legs and face, a constant sore throat for several years and the worst symptom was swallowing problems dysphargia.
I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disorder, Polymyalgia Rheumatica and eventually Lyme Disease.
I never tested positive for Lyme Disease but then 20 months of steroids for the PMR diagnosis would probably have skewed the results as would the antibiotic treatment received. However I did have two bulls eye rashes, the hall mark of Lyme, but sadly missed by the Locum doctor I saw. My GP was advised by Sue O'Connell the Head of the Lyme reference unit to stop antibiotics. When I did my symptoms deteriorated and so GP put me back on them.
Thank goodness the GP followed her own instincts and continued to treat me and I continued to improve, otherwise I doubt I would be enjoying my current good health.
Tuesday, 18 May 2010
Click the picture and it takse you to the video of the show.
You have 36 hours to act after a tick bite. Do you know what to do? Learn proper tick removal technique and lyme disease prevention.
Lyme Disease Prevention Tips
Cover skin in grassy/wooded areas.
Use insect repellent: 10-30% DEET or a natural alternative, oil of lemon-eucalyptus.
Wear light-colored clothing. It will be easier to spot ticks this way.
Check your pets. They can bring ticks into your home.
Shower! Ticks don’t bite immediately; they walk around the body looking for a “perfect” spot. Showering can preempt the bite. .
Monday, 17 May 2010
Images of Borrelia DNA in Alzheimer's Disease brain tissue- Including Specific DNA probes for Borrelia Flagellin DNA( A DNA sequence which is NOT present in the human genome) which glows Green when it finds its Target DNA in Alzheimer's brain tissue.Also illustrated in this short video are the concepts of TRANS SYNAPTIC transmission of infection in Rabies,and in Herpes Zoster/Shingles.Infections INSIDE of a nerve cell are transmitted Across Synapse connections to neighboring Nerve cells. Borrelia spirochetes gain access to the interior regions of nerve cells and are also\capable of "JUMPING' across Synapses to infect neighboring Nerve cells. Networks of Connected nerve cells (NEURAL CIRCUITS) then become infected by Trans-synaptic transmission. This "NETWORK" of infected nerve cells in the brain explains the PATTERN of Sequential destruction of Brain tissue in the Braak Stages of Alzheimer's Disease through the Braak stages I,II,III, IV, V , VI.For more information please visit the Molecular Alzheimer website athttp://www.molecularalzheimer.org
Further research has been done by Judith Miklossy who also found Borrelia DNA in the brains of Alzheimer's patients.
Judith also found spyrochetes(not necessarily Borrelia as there are other spyrochetal infections) in every one of the 14 patients she studied who had died of Alzheimer's, in their blood, spinal fluid and brain. In her control group of 16 who had not died of Alzheimer's she found no spyrochetes.
She goes on to say
'Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention as adequate anti-bacterial and anti-viral drugs are available. Treatment of a bacterial infection and associated viral infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial.
As it is the case for syphilitic paretic dementia, one may prevent and eradicate them'
To read more click here
This is Lyme Disease Awareness month and many will not be aware of the possibility that Lyme Disease, Borrelia could be the cause of their Alzheimer's. Certainly with the state of the controversy over diagnosis and treatment of Lyme Disease they will probably never have been assessed properly.
Pam Weintraube author of Cure Unknown has a lot to say in her book about the cognitive problems associated with Lyme Disease.
The following are two extracts from one of her many articles she wrote in Psychology Today.
Shadowland of the mind.
'Then I realized something I had never fully grasped despite my research, despite my own Lyme disease. Unless you have personally encountered the shadowland of the most afflicted patients-a world eclipsed by strange lapses of memory, broken speech, and the struggle to follow the simplest train of thought-you cannot begin to fathom the dense, disabling fog that may accompany the disease.'
'The German researcher Kohler had even reported a staging of the psychiatric symptoms that paralleled progression in the neurological realm. In the first stage, mild depression could parallel a fibromyalgia-like illness. In the second stage, mood and personality disorders often emerged alongside meningitis or neuropathy. Finally, in stage three, with the onset of encephalomyelitis, the clinical picture might include psychosis or dementia.'
To read more from Pam Weintraube see here Shadowland of the Mind in three parts but on the right hand side there are links to many more of her articles on Lyme Disease.
Sunday, 16 May 2010
Galway Advertiser, May 13, 2010.
Dr William Weir
By Mary O’connor
A UK ME expert with 25 years experience will give at a talk in Galway at the end of the month.
Dr William Weir will speak about ME/chronic fatigue syndrome on Sunday May 30 at 2pm at the Courtyard Mariott Hotel, Headford Road, as part of ME Awareness Month. Admission to the talk, which is entitled “25 years of experience with ME: past reflections, present difficulties and future possibilities” is €5. All are welcome.
Dr Weir qualified in medicine in 1972 from the Universities of St Andrews and Dundee. After training in general internal medicine he specialised in infectious and tropical disease, working in Nigeria and Zimbabwe and also as a lecturer in tropical medicine at the London School of Hygiene and Tropical Medicine.
It was at this time that he began to encounter ME patients and his interest in the illness developed from there. He was appointed consultant in infectious and tropical disease at the Royal Free Hospital in London, where he spent 14 years before going to the Middle East. He treats patients privately in London and Belfast and has seen about 1,500 ME patients during his career.
“My first experience with a patient with ME was 25 years ago,” he recalls. “I was working at the Hospital for Tropical Diseases in London and had seen a succession of fit young men and women return from various tropical countries with malaria and other infectious diseases. Almost invariably we were able to make them better with the modern drugs that were available. Nonetheless there were exceptions. The occasional patient did not recover as expected.
“The acute symptoms of malaria were replaced by an overwhelming sense of fatigue, continuing malaise and sleep disturbance. Most particularly, whatever sleep they could achieve was unrefreshing. Sometimes the sleep pattern was fragmentary and interrupted, sometimes prolonged and unbroken, occasionally lasting more than 12 hours. Always the complaint was of ‘feeling worse on waking’. Cognitive difficulties were frequently volunteered and were a considerable handicap. Attempts to exercise and get fit again were invariably rewarded, sometimes after a delay of up to 24 hours, by an overwhelming feeling of malaise, often with severe muscle pains. In my career so far I had not seen anything like it .”
He says he soon realised this was an illness which could follow any acute infectious disease, not just malaria.
“I became increasingly interested not least because of the extraordinary contention it caused among my colleagues. It seemed obvious to me that the symptoms being complained of were entirely genuine, particularly as many of the afflicted had previously been very fit and were desperate to feel well again.
“My view always has been that there is something organically wrong, probably in respect of immune function. Recent work has demonstrated that the immune system of ME patients seems to be abnormally and inappropriately activated, as if dealing with an infection. But frustratingly no such infection has been consistently demonstrated. The relative absence of such evidence allows the alternative, psychological model of the illness to be promoted in a way which seems to repeat itself in a familiar historical sequence.
“For example, both thyrotoxicosis [a condition in which the thyroid gland produces excess thyroid hormone (thyroxine) which results in effects on the whole body] and diabetes were once attributed to psychosocial causes until medical science demonstrated the genuine organic basis of these two conditions. Likewise, the characteristic tremor of Parkinson’s disease was given a number of bizarre psychosocial attributions until the biochemical basis of the condition was properly defined.”
Dr Weir believes experts are close to finding the cause of ME. “To coin a phrase, the future looks bright. This is because I am sure that discovery of the underlying cause of ME is not too far off. Already the genetic basis of the immunological dysfunction seen in ME is beginning to be understood. The role of (XMRV) Xenotropic murine leukemia virus-related virus [a retroviral infection which was recently discovered in humans and evidence of which was found in 67 per cent of a sample of 101 ME/CFS patients] has yet to be properly defined. I look forward to seeing further data concerning the potential role of this virus. Studies are ongoing to find out whether there is evidence of XMRV in other groups of ME/CFS patients. There are also other potential infectious agents which could fulfil this role. With proper elucidation of its cause(s) the magic bullet for ME may become a reality sooner rather than later. Time will tell.”
Orla Ni Chomhrai, co-ordinator of the Galway ME/CFS Support Group, says it is delighted to have such an eminent expert in the field coming to Galway.
“Dr Weir has had many years experience in this area having seen over a 1,000 patients with the condition. With this meeting, we will have a chance to hear him talk about his views of the illness and will have an opportunity to ask him questions, and so gain the benefit of his knowledge.”
Patients often have problems getting a diagnosis and adequate or appropriate support due to misunderstandings and ignorance surrounding the condition, she says.
“Raising awareness helps educate the general public about the condition and the impact it can have on sufferers’ lives. It is also useful for people to find out that there are others out there experiencing similar problems and that there are patient support groups as it helps them feel less alone.”
About 12,000 people in Ireland are believed to suffer from ME, now often diagnosed under the name chronic fatigue syndrome. Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory, and headaches. A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.
The cause of the condition is still unknown but 80 per cent of sufferers report an infectious onset - which is why it is sometimes called post-viral fatigue syndrome.
During awareness month volunteers will sell blue ribbons with the proceeds going to ME research. For further information contact the Irish ME/Chronic Fatigue Syndrome Association, PO Box 3075, Freepost F4439, Dublin 2 or e-mail email@example.com or telephone (01) 2350965.
Saturday, 15 May 2010
Dr Charles Ray Jones talking on Lyme Disease and Autism.
Dr Horowitz at the Lyme Induced Autism conference.
Lyme Induced Autism Foundation can be accessed here
If your child has Autism, Obsessive Compulsive Disorder (OCD) or Attention-Deficit Hyperactivity Disorder (ADHD) you may find this post interesting. Sadly as Lyme Disease is an emerging disease the controversy is holding back awareness amongst our doctors and so children with these disorders would rarely be properly assessed for a link with Lyme Disease.
Dr Bransfield the President of ILADS has worked in this field for some years and below is an abstract from his research.
The association between tick-borne infections, Lyme borreliosis and autism spectrum disorders.
Bransfield RC, Wulfman JS, Harvey WT, Usman AI.
Department of Psychiatry, Riverview Medical Center, 225 State Route 35, Red Bank, NJ, United States. firstname.lastname@example.org
Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders. A dysfunctional synergism with other predisposing and contributing factors may contribute to autism spectrum disorders by provoking innate and adaptive immune reactions to cause and perpetuate effects in susceptible individuals that result in inflammation, molecular mimicry, kynurenine pathway changes, increased quinolinic acid and decreased serotonin, oxidative stress, mitochondrial dysfunction and excitotoxicity that impair the development of the amygdala and other neural structures and neural networks resulting in a partial Klüver-Bucy Syndrome and other deficits resulting in autism spectrum disorders and/or exacerbating autism spectrum disorders from other causes throughout life. Support for this hypothesis includes multiple cases of mothers with Lyme disease and children with autism spectrum disorders; fetal neurological abnormalities associated with tick-borne diseases; similarities between tick-borne diseases and autism spectrum disorder regarding symptoms, pathophysiology, immune reactivity, temporal lobe pathology, and brain imaging data; positive reactivity in several studies with autistic spectrum disorder patients for Borrelia burgdorferi (22%, 26% and 20-30%) and 58% for mycoplasma; similar geographic distribution and improvement in autistic symptoms from antibiotic treatment. It is imperative to research these and all possible causes of autism spectrum disorders in order to prevent every preventable case and treat every treatable case until this disease has been eliminated from humanity.
PMID: 17980971 [PubMed - indexed for MEDLINE]
I had the privilege to hear Dr Bransfield present on Chronic Lyme Disease and Neuropsychiatric Lyme Disease at the Lyme Disease Action Conference 2008 details here.
Friday, 14 May 2010
Learn the truth about Lyme disease
by Dr. Betty Maloney, Lyme disease education advocate
Published in the Press (MN newspaper)
Thursday, May 13, 2010 2:45 PM CDT
May is Lyme disease awareness month and although the Press has carried articles, commentaries and letters on Lyme disease, many in this community need to hear more about the illness. But first, we need to talk about truth.
Much of what is proclaimed as “truth” in Lyme disease is based on insufficient evidence. There simply are not enough properly performed studies to establish any single approach to the illness as scientifically correct. This is especially true when it comes to the issue of chronic Lyme disease. How did the prevailing IDSA view, that Lyme is easy to diagnose and cure, come to be ingrained? Here Lenin was right, repetition won out.
To read the whole article in the press click here
There are other posts which give links to responses to the IDSA findings here
Knowledge and awareness of the Lyme Debate give us information to be our own best advocates when dealing with our doctors. Without that knowledge I am in no doubt that I would still be suffering with Chronic Arthritis, Muscle Weakness, Dysphagia and some neurological symptoms. I had been diagnosed with Fibromyalgia, then ME/CFS, Arthritis, Musculoskeletal Disease, Polymyalgia Rheumatica and then finally Lyme Disease. Thank goodness I was treated on long term antibiotics and have recovered my health and life.
Having been so ill and having recovered so significantly is it any wonder I try and raise awareness in any way I can.
Thursday, 13 May 2010
If patients with Neurological symptoms are actually tested for Lyme Disease their doctors are led to believe that a negative result means you can't have Lyme Disease. This is quite wrong research shows blood tests can miss up to 50% of cases.
Imagine living with a progressive infectious illness, treated symptomatically when adequate treatment on antibiotics is the way Lyme disease is treated and symptoms can improve and we can regain our health and our lives.
There are many patients with Lyme Disease that I am in touch with who have neurological symptoms and some previously have been diagnosed with MS but on antibiotics are getting better.
The presentation by Lorraine Johnson to the IDSA review panel shows her scans before and after treatment for Lyme Disease she had been previously diagnosed with MS. Her video and presentation can be found on http://www.ilads.org/ by clicking on the right hand side lower down on their home page.
In fact all these presentations are worth taking time to watch and read so that we can all make our own decisions sadly many of our consultants won't have taken the time to consider this considerable body of evidence supporting ILADS guidelines and remain way behind the times following outdated opinions those of the IDSA 2006 guidelines.
Many of the ILADS supporters presented research on the problems over testing but another useful place to look is http://www.lymeinfo.net/lymefiles.html
17 pages of studies on seronegativity
For over 20 years studies have been done regarding Lyme Disease mis diagnosed as Multiple Sclerosis
Why are our doctors still missing the diagnosis well you need to get very well informed of the shenanigans that have been skewing the science and the guidelines that our doctors rely on since Lyme Disease was found to be a bacterial infection in the early 1980's. Of course Borreliosis was recognised in Europe about a hundred years before it was called Lyme Disease and one of the European species is characterised by it's neurological presentations.
One very clever student some years ago correlated a map comparing incidence of Lyme Disease and Multiple Sclerosis you can see her work here.
Canada has the highest incidence of MS in the World, but patients with Lyme Disease probably have the hardest job getting diagnosed with Lyme Disease and there are no Lyme Literate Medical doctors practising in Canada, not every patient can afford to travel out of state for treatment.
Scotland I believe also has a very high incidence per population of Multiple Sclerosis, it has been a known endemic area for Lyme Disease for many years.
Some recent research on Rare infections mimicking MS.
Brinar VV, Habek M.University of Zagreb, School of Medicine and University Hospital Centre Zagreb,Department of Neurology and Refferal Center for Demyelinating Diseases of the Central Nervous System, Zagreb, Croatia.
The diagnosis of multiple sclerosis (MS), despite well defined clinical criteria is not always simple. On many occasions it is difficult to differentiate MS from various non-MS idiopathic demyelinating disorders, specific and infectious inflammatory diseases or non-inflammatory demyelinating diseases. Clinicians should be aware of various clinical and MRI "red flags" that may point to the other diagnosis and demand further diagnostic evaluation. It is generally accepted that atypical clinical symptoms or atypical neuroimaging signs determine necessity for broad differential diagnostic work up. Of the infectious diseases that are most commonly mistaken for MS the clinician should take into account Whipple's disease, Lyme disease, Syphilis, HIV/AIDS, Brucellosis, HHV-6 infection, Hepatitis C, Mycoplasma and Creutzfeld-Jacob disease, among others. Cat scratch disease caused by Bartonella hensellae, Mediterranean spotted fever caused by Riketssia connore and Leptospirosis caused by different Leptospira serovars rarely cause focal neurological deficit and demyelinating MRI changes similar to MS. When atypical clinical and neuroimaging presentations are present, serology on rare infectious diseases that may mimic MS may be warranted. This review will focus on the infectious diseases mimicking MS with presentation of rare illustrative cases. Copyright (c) 2010. Published byElsevier B.V.http://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=20439131&retmode=ref&cmd=prlinksPMID: 20439131 [PubMed - as supplied by publisher]
Whilst the science is still emerging about Lyme Disease and doctors badly misled by all our health authorities it pays to become well informed and do our own research before accepting at face value everything our doctors tell us, they are after all human and can make mistakes.
Wednesday, 12 May 2010
Thank you Laurel for all the effort and precious energy you spend in raising awareness of these truly awful illnesses.
I was one of the few to be diagnosed with Lyme Disease after 4 years of being diagnosed with Fibromyalgia, then ME/CFS, Arthritis and Muscle Weakness and then Polymyalgia Rheumatica.
I was one of the lucky to be treated on long term antibiotics and recover from debilitating and painful symptoms of Arthritis and Muscle Weakness but also some Peripheral Neuropathies.
Coincidentally today happens to be the bimonthly meeting of patients local to me in Guildford Surrey. Although we don't all get to the meeting there must be about 20 people I am in touch with all with Chronic Lyme Disease, many previously diagnosed with ME/CFS. So much for our HPA saying Lyme Disease is so rare and without a doubt there will be many more that I am not aware of or they are not aware their symptoms could be as a result of Lyme Disease.
If every person with a diagnosis of ME/CFS or Lyme Disease could spare just a small amount of money to donate to the Whittemore Peterson Institute it could make a differnece in supporting their work in moving forward with research on XMRV whilst our governments remain in denial.
Links to donate here.
Tuesday, 11 May 2010
So many symptoms of Multiple Sclerosis are the same as Lyme Disease and patients with Lyme Disease are diagnosed with Multiple Sclerosis, but actually get better on long term antibiotics for Lyme when properly diagnosed.
Of course I did a try with Google and it was interesting except the second one referred me back to the possibility of Lyme which made me chuckle that at last we are becoming more aware of Lyme Disease, on the Internet at least.
I asked permission to post a further post in that thread because I think it so clearly shows the problems we have with our doctors investigating our illness.
The same can be said for so many illnesses but especially Fibromyalgia, ME/CFS, Arthritis and Neurological illnesses such as MS but also Parkinson's and ALS or Motor Neurons.
Actually, I think that's one of the problems. So many conditions include what we consider "Lyme symptoms" (e.g. crushing fatigue, sleep disturbance) I think docs find it overwhelming. Especially once they've ruled out the ones they're used to. Eg thyroid issues, anaemia, raging viral infection.
I've lost count of the number of times consultants have come to the conclusion that I must have HIV. (I don't. Tested twice, at their insistence.)
Funny isn't it... at one point they think it's likely that you have a life-threatening, treatable but currently incurable disease. Then when they find out you don't have it, they decide whatever it is can't be that serious, and just label it CFS. That's quite a leap.
The very first doc I saw thought I probably had a lymphoma. I've kind of gone backwards in how seriously ill they consider me, because if they can't diagnose it, they don't think you can be ill with *anything*.
As my symptoms got progressively worse, they decided I was getting better!
Doesn't this sum up our experiences so well in just a few words.
However my symptoms were not so much Neurological apart from a few Peripheral Neuropathies and the scary Swallowing problems Dysphagia, they were mainly Arthritis and Muscle weakness. Other patients find the infection affects different areas causing all sorts of symptoms including Psychiatric, ADHD, Autism, OCD as well as Alzheimers. For all these of course a different Rosetta Stone would be needed but better still perhaps we should just stick with Burrascano Guidelines found at www.ilads.og
Perhaps ILADS will be the Rosetta Stone for so many of our health problems.
Monday, 10 May 2010
If you have Fibromyalgia, ME/CFS, Polymayalgia Rheumatica, Arthritis or Neurological problems as I did, then do read on.
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.
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.
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.
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.