WHAT MOST DOCTORS WON'T KNOW

Listen to internet radio with Gab With the Gurus on Blog Talk Radio

Top experts in the field of Lyme on Gab with the Gurus a must to listen too.

Anyone who suffers with symptoms like mine Arthritis, whether it be Rheumatoid or especially if it is Juvenile Rheumatoid Arthritis, Muscle Weakness or even Neurological problems or Psychiatric problems, or if like me you have been diagnsoed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, musculoskeletal disease, Polymyalgia Rheumatica, in fact anyone visiting my blog would do well to listen to this recording, one thing very clear is that the science is not all known about Lyme Disease or other tick borne illnesses.

What the Gurus are saying is that if doctors don't know what is causing your many symptoms and you suspect a tick bite then keep looking until you can find a doctor to help you. So don't stay sick but do something about it and ask the doctor how many cases he has treated of Lyme Disease and how much time he is prepared to spend on considering this diagnosis. This would be a good indication on the competance of this doctor in dealing with Lyme Disease whilst there is so much controversy and two standards of care in treating patients.

Lyme Disease: The Dangerous, Tick-Transmitted Disease -- What it Is & How to Avoid It with Top Gurus

2/06/2010 19:00 - Length:1 hr 30 min

Learn about Lyme disease, the fastest-growing infectious disease, which is transmitted by infected ticks. This show will also help you learn how to identify if you have the disease and how to get treated. We'll also discuss why the medical community is so flummoxed by their patients' ailments.

My guests include Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Disease Epidemic"; Dr. Leo J. Shea, III, vice president of the International Lyme and Associated Diseases Society (ILADS) and Clinical Assistant Professor of Rehabilitation Medicine at Rusk Institute, a division of the New York University Langone Medical Center; Phyllis Mervine, founder of the California Lyme Disease Association (CALDA); and Connie Strasheim, a health Care Journalist and author of two books about Lyme disease, including her latest, "Insights Into Lyme Disease Treatment." Please read my recent op ed piece on AOL News. Learn more at ==== >> http://tinyurl.com/OverlookedEpidemic-Connie-AOL

http://www.blogtalkradio.com/gabwiththegurus/2010/06/02/lyme-disease-the-tick-transmitted-disease--what-it

Dr Leo J Shea will be presenting his new research on 12 June at the ILADS London Conference. see www.ilads.org for details.

PROOF THAT CHRONIC LYME DISEASE EXISTS

I don't doubt that Chronic Lyme Disease exists, I had 6 1/2 years of chronic health with Arthritis, Muscle Weakness, Peripheral Neuropathies mis diagnosed as Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculoskeletal Disease, Poly Myalgia Rheumatica until a chance course of antibiotics improved my symptoms and led my GP to suspect Lyme disease. My story is in the right hand column of this blog.

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.



http://www.hindawi.com/journals/ipid/2010/876450.html

Interdisciplinary Perspectives on Infectious DiseasesVolume 2010 (2010), Article ID 876450, 4 pagesdoi:10.1155/2010/876450

Research Article

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.

Abstract
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.

The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgias, neurocognitive impairment, and neuropathy or myelopathy, a mean of 6 years after treatment for Lyme disease (LD) [1]. Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County were found to have arthralgias, arthritis, and cardiac or neurologic involvement with or without fatigue a mean of 3.2 years after treatment [2]. Klempner trials’ subjects presenting with “well-documented, previously treated Lyme disease…had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue” and were ill during a mean of 4.7 years after onset [3]. Fallon trial subjects presenting with “well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment,” were ill during a mean of 9 years after onset [4]. Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” [5].

There is also evidence that symptoms of CLD can be severe [4–8]. The Klempner trials described the quality of life for patients with 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” [3]. Fallon et al. described pain reported by patients with Lyme encephalopathy as being “similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure” [4].

Despite the above documented evidence, the 2006 Infectious Diseases Society of America (IDSA) LD treatment guideline panel questioned the existence of CLD [9]. The IDSA panel concluded, “Considerable confusion and controversy exist over the frequency and cause of this process and even over its existence” [9]. The IDSA panel referred to chronic manifestations of LD as Post-Lyme disease syndrome (PLDS), PTLD and CLD. There are shortcomings for each term. The PLDS nomenclature implies that an active LD has been successfully treated, that any remaining symptoms are merely harmless vestiges of previous illness, and that the patient has been cured. The term PTLD merely implies that LD has been treated with antibiotics for 10 to 30 days. The CLD nomenclature implies that chronic manifestations of LD are present with or without evidence of active infection that cannot be reasonably explained by another illness.
There is no objective way to rule out an active infection. Lab tests that can be very helpful in confirming a clinical diagnosis of Lyme disease (such as the ELISA and Western blot tests) are not useful in determining whether the infection has been adequately treated. Common LD symptoms such as Bell’s palsy, erythema migrans rash, meningitis, arthritis, or heart block, which are included in the current surveillance definitions, can be useful in “ruling in” Lyme disease, but the absence or disappearance of these symptoms cannot “rule out” an ongoing infection. A population-based, retrospective cohort study of individuals with a history of LD revealed that they were significantly more likely to have joint pain, memory impairment, and poor functional status due to pain than persons without a history of LD, even though there were no signs of objective findings on physical examination or neurocognitive testing [10]. Two recent mouse studies revealed that spirochetes persist despite antibiotic therapy and that standard diagnostic tests are not able to detect their presence [11, 12]. In sum, there are no clinical or laboratory markers that identify the eradication of the pathogen.

The IDSA panel also questioned the severity of CLD symptoms. The panel dismissed LD symptoms that persisted or recurred after their recommended, short-term course of treatment, stating that they were: “more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection” [13]. The panel came to this conclusion despite four NIH retreatment trials that validated the severity of symptoms on 22 standardized measures of fatigue, pain, role function, psychopathology, cognition, and quality of life (QOL) [9].
Denying the existence and severity of CLD will continue to hinder the efforts to find a solution. Even in a prospective trial of LD, 10 to 16% of patients treated at the time of an erythema migrans rash remained symptomatic a mean of 30 months after treatment; the results varied depending on the duration of antibiotics treatment [14]. The actual failure rate in this prospective at 30 months is uncertain, given that 38% of the subjects were not evaluable due to poor adherence, receipt of intercurrent antibiotics, or development of a second episode of erythema migrans [14]. Patients infected with many other kinds of common bacteria—such as those that cause tuberculosis, bronchitis, or UTIs—can experience relapses after an initial course of antibiotic treatment fails or proves inadequate. Doctors routinely retreat patients who relapse in order to achieve a cure and prevent chronic symptoms. Why should patients with Lyme disease be treated differently?

The treatment failure rates could be exacerbated by diagnostic delays. Feder described treatment delays of six weeks in LD patients initially misdiagnosed with cellulitis [15]. In his trial, Fallon noted treatment delays averaging 2 years [4] without examining the causes of the delay. In my own practice, 32% of a consecutive case series of LD cases (confirmed by an ELISA and 5 or more positive bands on a IgG Western blot) had an average treatment delay of 1.8 years. [16] Of these, 60% conformed to Centers for Disease Control and Prevention (CDC) epidemiological criteria, presenting with a rash, Bell’s palsy, or arthritis, yet, still had a diagnostic delay [16]. Patients in this case series were significantly more likely to fail their initial antibiotic treatment if they had delayed treatment [16]. Vrethem et al. concluded that patients treated because of neurological symptoms of LD were much more likely to present with persistent neuropsychiatric symptoms (headache, attention problems, memory difficulties, and depression) three years after treatment than a control group with erythema migrans (50% versus 16%, ) [17].

The diagnostic delays could reflect the failure to consider CLD in the differential diagnosis of chronic manifestations of LD. Steere did not include CLD in the differential diagnosis of patients seen in his university-based clinic. Instead, Steere diagnosed three-quarters of patients with “fibromyalgia” or “chronic fatigue syndrome” [18]. Similarly, Reid et al. did not include CLD as a diagnosis in their university LD clinic. Instead, he diagnosed these patients with “arthralgia-myalgia syndrome,” primary depression, asymptomatic deer tick bites, osteoarthritis, and bursitis [16]. Hassett et al. diagnosed PTLD in patients with a history of objective evidence of LD, but withheld it from patients who lacked such a history. Instead, this group was diagnosed with “Chronic Multisymptom Illness (MUI) [19]. Their case definition for Chronic Multisymptom Illness was: “ [having] at least one or more chronic symptoms from at least 2 of 3 categories of symptoms including musculoskeletal, fatigue, and mood cognition” that includes fibromyalgia, chronic fatigue syndrome, and Gulf War syndrome [19].

The risks to the individual and society of CLD have not been adequately considered [20]. As a group, CLD subjects in the four NIH trials had a 4% risk of a serious adverse event in the antibiotic treatment arms [4–6]. Yet, this risk has not been weighed against the risk CLD patients face if burdened with a long-term debilitating illness. The risk to society of emerging resistant organisms also has not been weighed against the societal risks associated with an emerging population saddled with CLD [8].

The economic burden of CLD has yet to be addressed. The mean cost estimate of CLD per patient in the US, of $16,199 per annum in 2002 dollars [8], reflects the toll on human health and cost to society. The annual per-patient cost of CLD is substantially higher than the cost for other common chronic illnesses: $10,911 for fibromyalgia [21], $ 10,716 for rheumatoid arthritis [21], and $13,094 for lupus [22]. Eighty-eight percent of the cost ($14,327) of Lyme disease consisted of indirect medical cost, nonmedical cost, and productivity losses. Cutting medical cost would save, at most, only 12% or $1,872 per annum. In 2002, the annual economic cost of LD in the US, based on the 23,000 cases reported to the CDC that year, was estimated to be $203 million [8]. Considering that the actual number of LD cases is believed to be 10 times higher than the number of cases reported to the CDC, the actual annual cost could be $2 billion [23, 24].
The burden of CLD is also reflected in testimony given by Connecticut’s chief epidemiologist before the state’s Public Health Department in 2004: “roughly one percent of the entire population or probably 34,000 people are getting a diagnosis of Lyme Disease in Connecticut each 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” [24].
No additional antibiotic trials have been planned for CLD patients despite the limitations of the Klempner and Fallon trials. Klempners’ trials were limited by: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) ongoing illness despite a mean of three previous treatments, (3) long onsets of illness averaging 4.7 years, (4) the poor quality of life of the subjects, and (5) small, underpowered sample sizes of 51 and 78 subjects [25]. The Fallon trial had similar limitations including: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) treatment delays averaging two years, (3) onsets of illness averaging 9 years, (4) the severe pain, fatigue, psychopathology, and poor QOL of subjects, and (5) a small underpowered sample size of 37 subjects. The IDSA panel did not suggest any further clinical trials to address these limitations. In an editorial titled “Enough is Enough”, which was published as a commentary on Fallon’s trial, Halperin, an IDSA panel member, actually advised against further trials [26].

There is also an urgent need to address the mixed long-term outcome in children. Eleven percent of children with facial nerve palsy had persistent facial nerve palsy causing dysfunctional and cosmetic problems at 6-month followup [27]. Fourteen percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease on followup [28]. Five of these children developed “behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder” [28]. Children with prior cranial nerve palsy have significantly more behavioral changes (16% vs. 2%), arthralgias and myalgias (21% vs. 5%), and memory problems (8% vs. 1%) an average of 4 years after treatment compared to controls [29].
Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.

References

1. 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.

AWARENESS CHILDREN MIS DIAGNOSED

What I find most troubling about the denial over Lyme Disease is that children are failing to be treated for tick bites, bulls eye rashes and allowed to develop chronic ill health. Worst still our specialist doctors are not picking up on the Lyme Disease because of the problems over denial.



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 ?



http://www.the-daily-record.com/news/article/4829726



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.

DR OZ ON AWARENESS

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. .





http://www.doctoroz.com/videos/avoid-bite-lyme-disease

THE CHALLENGES OF LYME DISEASE: EMERGING RESEARCH-PEDIATRIC CARE

If you click on the above you will be able to read the details.



What an impressive line up of Doctors, Researchers and Advocates.



The meeting was organised for yesterday by Eva Sapi at New Haven University



This is the New Haven Lyme research page here



Dr. Eva Sapi, a professor of cellular and molecular biology has Lyme Disease, and is researching it too.



Because of the dedication of all these people and so many more, patients like myself have been helped to get their health back.



Sadly main stream medicine is way behind on the developments of this emerging disease and so if you have symptoms that could be attributed to Lyme Disease you need to do your own investigations before discussing with your doctors.



The symptoms of Lyme Disease are many, mine were mainly Arthritis, Muscle weakness, Fatigue, inflammation, Bursitis diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica and finally Lyme disease and on long term antibiotics, not recognised by main stream medicine for Lyme Disease I have my health and my life back.



Many of the patients I am in touch with on Eurolyme a chat line have neurological symptoms and some have been diagnosed with MS. The worst of my symptoms was Dysphagia, swallowing difficulties and I did have some Peripheral Neuropathies all resolved on antibiotics.

So a big thank you to all these dedicated Lyme Warriors, hopefully the presentations will be available on DVD so that many more Doctors can be educated into helping the thousands more patients who are given symptomatic medication rather than medication fighting the cause of their illness.

JUVENILE RHEUMATOID ARTHRITIS

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

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

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

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

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

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

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

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

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

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

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

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

DENYING A DISEASE WHILST RESEARCH IS EVOLVING LEAVES PATIENTS WITHOUT TREATMENT

The controversies surrounding Lyme Disease and ME/CFS are both paralleling each other in not dissimilar ways. This leaves thousands of patients struggling with Chronic illness the World over whilst a handful of people have control of their disease refusing to listen to all the emerging science but sticking to the same old biased views.

If you like me have Arthritis, Fatigue, Muscle weakness, Peripheral Neuropathies or like others Neurological illness and have been diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lyme Disease, MS, MN, ALS and the list goes on then click into the following links and read the presentations.

The first is Pat Smith speaking on the subject of Lyme Disease taken from the CALDA blog. Pat is presenting to the Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Reading the list of speakers makes those of us knowledgeable about this illness laugh, if it wasn't so tragic, not one person speaking out from an alternative view, that of ILADS. Pat says it so well. Thank you Pat for all you do fighting the ignorance and denial of Lyme Disease which leaves so many suffering when treatments that can help are denied because those with power choose to close their minds to the emerging science.

Whittmore Petterson Institute Testimony of Annette Whittemore to CFSAC April 25th 2010

Thank you Annette for all your work in fighting for patients with ME/CFS despite our governments efforts to marginalise this terrible illness.

One day the truth will out as science finally catches up with the experiences of patients but until then doctors and researchers and those holding the purse must have an open mind.

Meanwhile as patients we need to get informed, long gone are the days when Doctor knows best, we need to steer our own way through these illnesses with the guidance of doctors prepared to listen and help us.

THE REAL ADVERSARY LYME DISEASE

The following excellent article by Elizabeth Maloney puts a very different emphasis on treating patients like myself on long term antibiotics. I was fortunate that my severe Arthritis and Muscle Weakness diagnosed as Fibromyalgia then ME/CFS, later Polymyalgia Rheumatica was eventually after four years diagnosed as Lyme Disease, my story is on my side bar. On long term antibiotics all my Arthritis and Muscle Weakness resolved. How many patients so sick they are retired early recover so well from Arthritis and Muscle Weakness. How many thousands of patients must suffer whilst our mainstream medicine turns a blind eye.

Thank goodness for doctors such as Elizabeth Maloney how lucky I was to have a thinking doctor who could see the benefits from long term oral antibiotics.

Elizabeth Maloney: We've much to learn about Lyme disease
Assertions in a recent article were based on unreliable evidence.
By ELIZABETH MALONEY
Last update: April 22, 2010 - 7:00 PM
http://www.startribune.com/opinion/commentary/91867889.html?page=1&c=y
The April 12 article about the resolution passed by the Minnesota Board of Medical Practice ("Activists and doctors divided over Lyme disease treatment") brought many questions to mind, including: "When did the Star Tribune morph into Fox News?" The article used buzzwords and themes known to inflame physicians, and it misled readers regarding the professional credentials and capabilities of physicians who recognize that persistent/chronic Lyme exists.
I am a family physician who has spent the last several years researching and developing educational materials and programs on Lyme disease; my current course for primary care physicians is accredited for six continuing medical education credits by the American Academy of Family Physicians.
Lyme disease is a relatively new illness. Our scientific understanding of it continues to evolve, yet basic questions remain unanswered. For example, we lack reliable diagnostic tests and tests of cures. Until we can separate the infected from the noninfected and the cured from the uncured, arguments over diagnostic and treatment approaches will continue.
This is especially true when it comes to the medical management of patients who remain ill after receiving commonly prescribed courses of antibiotics. Persistent infection has been demonstrated in multiple animal models and human case reports, and two schools of thought have developed.
The Infectious Diseases Society of America (IDSA) takes a narrow view, offering limited treatment options. The International Lyme and Associated Diseases Society takes a broad view, believing that doctors can best determine who should be treated and in what manner.
The IDSA is concerned about the "overuse" of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn't support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.
Thus, while the IDSA's viewpoint was emphasized in the April 12 article, it isn't scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.
What we don't know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today's patients can't wait for tomorrow's research.
Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient. Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.
The argument over treatment recently came before the Minnesota Board of Medical Practice. In March, the board passed a resolution placing a five-year moratorium on investigations based on third-party complaints concerning the prescription of long-term antibiotics. While the board was reportedly reluctant to pass its resolution, I applaud its leadership. The moratorium preserves the board's authority and buys time for additional scientific information to come to light. I'm confident we will learn much in the five years the board set aside.
The tone and material of the April 12 article may move papers and search engines, but it doesn't serve the public or medical communities. To my medical colleagues, let me suggest this: Rather than waste energy on what divides us from our patients and each other, let's put rhetoric aside and go after the real adversary, Lyme disease.

The IDSA is concerned about the "overuse" of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn't support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.
Thus, while the IDSA's viewpoint was emphasized in the April 12 article, it isn't scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.
What we don't know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today's patients can't wait for tomorrow's research.
Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient. Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.
The argument over treatment recently came before the Minnesota Board of Medical Practice. In March, the board passed a resolution placing a five-year moratorium on investigations based on third-party complaints concerning the prescription of long-term antibiotics. While the board was reportedly reluctant to pass its resolution, I applaud its leadership. The moratorium preserves the board's authority and buys time for additional scientific information to come to light. I'm confident we will learn much in the five years the board set aside.
The tone and material of the April 12 article may move papers and search engines, but it doesn't serve the public or medical communities. To my medical colleagues, let me suggest this: Rather than waste energy on what divides us from our patients and each other, let's put rhetoric aside and go after the real adversary, Lyme disease.
Elizabeth Maloney, of Wyoming, Minn., is a physician and Lyme disease educator.

Elizabeth Maloney, of Wyoming, Minn., is a physician and Lyme disease educator.

ANTIBIOTIC APPROACH TO ARTHRITS FIBROMYALGIA AND OTHER ILLNESSES

The Antibiotic Approach to Rheumatoid Disease - The Road Back Foundation from The Road Back Foundation on Video.

The Road Back Foundation is dedicated to preserving the life's work of the late Dr. Thomas McPherson-Brown, a rheumatologist who believed in infectious causes for rheumatic diseases such as , rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. To learn more about this life-saving, proven, safe treatment and to meet other patients who have reached remission on Dr Brown's antibiotic protocols visit: roadback.org

Dr Brown died in the late 1980's but for 50 years he had successfully treated Rheumatoid Arthritis patients with antibiotics, only in the last few years of his life was Lyme Disease found to be a bacterial infection, he realised that some of his successes may have been related to treating an undiagnosed Lyme infection.

There is a lot of interesting information on this rather long video so many striking parallels to what I have learnt about Lyme Disease and the problems getting the medical profession to be open minded.

I was interested to hear Dr Brown talk about the treatments for Rheumatoid Arthritis prior to 1949 when it was considered that it could have an infectious origin. Sadly the onset of steroids in 1949 changed the treatment protocols significantly. Now most treatments are aimed at reducing the symptoms whilst no longer seeking to cure the cause of the illness, in other words palliative care, again much the sames as is happening in many other illnesses including chronic Lyme Disease symptoms unless you are fortunate as I was to find a doctor to treat as per www.ilads.org

TIGECYCLINE

My illness of 6 1/2 years was diagnosed as Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Polymyalgia Rheumatica and then finally Lyme Disease. On long term antibiotics all my symptoms got better.

Many of the Lyme Disease patients I am in touch with suffer serious neurological symptoms, I was lucky to have just a few Peripheral Neuropathies.

Tygecycline has been much talked about of late as an antibiotic for the treatment of Lyme Disease.

Here blog Spirochetes Unwound posts an interesting discussion on Barthold's very useful study
http://spirochetesunwound.blogspot.com/2010/03/tigecycline-fails-to-eradicate.html

Would prolonging antibiotic treatment eventually eliminate the spirochetes? Curiously, tigecycline was administered to the mice for only 10 days.

Still so many questions.

In the Loop recently posted about the Margulis and Brorsons' study
http://www.umass.edu/loop/talkingpoints/articles/99534.php

What the Brorsons’ work shows is that, unlike other antibiotics, Tygecycline administered at the correct dosage and timing destroys the bacterium even when it has protected itself in this quiescent stage. Other antibiotics, if they do anything at all, simply cause B. burgdorferi to enter its RB propagule state and wait out the treatment. “Tigecycline is, so far, the only known antibiotic that destroys the Lyme disease spirochete in both the growing and the quiescent RB stages of its life history” Margulis notes.

If you enter Brorson in the search in my right hand column you will find I have posted before about their research but I thought these latest articles very interesting.

For an infection that IDSA says is sooo simple to cure on a couple of weeks antibiotics there's an awful lot of research articles proving it is a far more complex bacteria than IDSA or our health authorities will acknowledge.

It is nearly two years since IDSA agreed to review their guidelines and still no result.

How many thousands of patients Worldwide have been infected in those two years and refused adequate treatment?

How many thousands of patients Worldwide have never been properly assessed to see if it could be Lyme Disease and continue to struggle with chronic illness when simple antibiotics could help their condition?

How lucky was I to have two very pioneering doctors who have successfully treated me.

POLY MYALGIA RHEUMATICA

http://ard.bmj.com/content/49/7/521.abstract

Ann Rheum Dis 1990
Research Article
A seasonal pattern in the onset of polymyalgia rheumatica.
M A Cimmino,
R Caporali,
C M Montecucco,
S Rovida,
E Baratelli,
M Broggini
+ Author Affiliations

Department of Rheumatology, Genoa University, Italy.
Abstract
The seasonal distribution in the onset of polymyalgia rheumatica (PMR) was determined in 58 patients with the disease and compared with that in 44 patients affected by rheumatoid arthritis of elderly onset (EORA). Thirty six (62%) cases of PMR developed during May to August; by contrast, only 14 (31%) cases of EORA developed in the same months, this latter disease failing to show any seasonal clustering. The monthly distribution of PMR correlated with outside temperature and hours of sunshine. These data suggest that PMR might be triggered by such factors as actinic damage of superficial vessels or infective agents with a seasonal cycle. Finally, the summer clustering of PMR may be helpful in the differential diagnosis from EORA.

Hmm! May to August isn't that prime tick sequesting time?

What a thought provoking piece of research shame they didn't consider other epidemiological possibilities. My own illness which was diagnosed as Poly Myalgia Rheumatica turned out to be Lyme Disease. In fact reading about Lyme Disease and knowing the many problems with the vascular system I have to question the Giant Cell Arteritis? But then hey perhaps that is just me adding two and two and making five, what would I know about medicine.

I am just glad that my GP finally realised after 4 years of illness with Fibromyalgia, ME/CFS, arthritis and muscle weakness leading to a Poly Myalgia Rheumatica diagnosis that it was possibly Lyme Disease some months later a specialist confirmed her suspicions. I was treated on long term antibiotics in line with ILADS Guidelines and eventually recovered my health.

I wonder how many patients suffering with Poly Myalgia Rheumatica are properly assessed for Lyme disease especially with the testing being so unreliable.

THE MEDICAL RELATIVE FROM HELL!!

The Medical Relative from Hell!

I suppose when a doctor finds themselves or their loved ones with Lyme Disease they must become the Medical Relative from Hell, there is so much that our doctors are not aware of with Lyme Disease and it's multitude of symptoms and misdiagnosis MS, Psychiatric, ME/CFS, Fibromyalgia, Arthritis other neurological illnesses just a few that come to mind all well documented in the Lyme Disease literature, if only doctors had the hours to look, which of course we as sick patients and carers do have the time to get informed, from sheer desperation and we are often very well informed.

Interestingly Lyme Disease awareness in the UK has a number of medics in the forefront, clearly their training has helped them to their or their family's diagnosis, but sadly they too have trouble with their doctors over Lyme Denial.

During my recovery I passed a few interesting research articles along to my GP, she always received them well, in fact even said 'you are educating me'!! What an open minded doctor and how lucky was I.

I doubt she has many patients who spend years with debilitating painful arthritis and muscle weakness, having difficulty standing and walking across a room who over time and long term antibiotics fully recover and cycle again.

So to read more about the Medical Relative from Hell there is a new quirky Lyme blog I came across recently on doc2doc blogs Secret diary of a Lyme Warrior, I look forward to reading more posts on this new blog.

LYME DISEASE IN THE MEDIA

A message posted on Can Lyme recently says that Dr Mercola will be talking on the Oprah Winifred show about Lyme Disease on March 2nd.
Lets hope the program does justice to the subject.

Dr Oz interviewed Kathy Fowler and Andy Abrahams Wilson Director of Documentary film Under Our Skin in November 2008, details can be found on Under Our Skin website with links into the first part of the radio interview.

Dr Oz talks about Chronic Lyme disease in the Oprah Magazine in November 2009.

"There is absolutely no doubt chronic Lyme disease [CLD] exists," says Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation. What's more, he adds, many of those who contract Lyme disease can also have tick-borne coinfections like babesiosis, caused by parasites, and their symptoms can easily be mistaken for those of other ailments such as chronic fatigue syndrome and fibromyalgia. "Like syphilis, chronic Lyme disease is a great imitator," Horowitz notes. He has seen more than 11,000 patients whose CLD he has helped to pinpoint using his own broad differential diagnosis, which looks at all possible causes of symptoms. Along with specific treatments for any overlapping conditions, he often prescribes a combination of targeted antibiotics to beat the infection, and says he has seen dramatic recoveries.
----------------------------------------------------

Whilst the controversy rages on, I was one of the few lucky people whose chronic illness 'presumed' Lyme Disease was improved by long term antibiotics. After 6 1/2 years of chronic arthritis and muscle weakness affecting nearly every joint in my body and many of my muscles I am now 100% recovered.

How many people with diagnosis like mine of Fibromyalgia, ME/CFS, Arthritis and Muscle weakness, Poly Myalgia Rheumtatica can say after 6 1/2 years chronic ill health that they are recovered.

My medication, just antibiotics.

When you look at the list of medications many people with Fibromyalgia, Arthritis, Poly Myalgia Rheumatica take, all far more aggressive than mine, one has to wonder how many of them like me have Lyme Disease, undiagnosed and how many on simple antibiotics could find their symptoms improve.

ME/CFS XMRV DR MIKOVITS

Before I was diagnosed with Lyme Disease I had been diagnosed with Fiobromyalgia and then ME/CFS and then Arthritis and muscle weakness leading to a Poly Myalgia Rheumatica diagnosis, so I watch with interest how things are developing with new retrovirus XMRV. Like many I was disappointed to hear of the two UK studies finding no XMRV but remained sceptical about the method of those studies, below is an insight into those methodologies.

Dr. Mikovits - Dr. Cheney on XMRV and CFS Transcript (2/20/10)
extracts
I’d like to start with Judy and ask her a couple of questions having to do with how hormones might interact with XMRV, specifically androgens &/or estrogens, or even any other hormones. Judy, can you answer that?Judy – We know from work in the laboratories of Bob Silverman and Steven Goff from Columbia University that the retrovirus XMRV has what’s known as the cis-acting element, literally the on/off switch of the virus, two androgen and hormone responsive elements. And that means that when that virus, when the on/off switch sees certain hormones, it can turn it on &/or off, so what you would want to do is have a balance of hormones and not spikes. And we really don’t know a lot of how exactly they control the expression of the virus or the reservoirs that might be involved given the hormone sensitivities or switch of the virus, but there is a hormone responsive element to the virus that we think will be critical in understanding how it might cause disease. Cheney – I see. We’ve been looking at hormones here for several years now using the Echo Terrain Map technology which allows us to look at redox shifts, very sensitively in CFS patients. And we see, in cases of hormone testing, both on the scan or under the tongue, a rather transient and immediate responses from a redox perspective, both positive and negative. And my concern about that is that it may not necessarily reflect what happens downstream in case of a virus, but certainly redox shifts, positive or negative, might influence the virus. In that regard, my sense, over time, has been that, perhaps, a balancing act of hormones may be the best way to go and not to rely on one particular hormone to suppress it or worry about another particular hormone activating it. But it’s more about balance than any specific hormone.

Cheney – Okay. Why do you think peptide-T would actually inhibit XMRV? Is there a scientific basis for that? Or is just hoped that it will?Judy – Actually, no. On that note, Candice Pert who actually developed, discovered it and runs the company that has run clinical trials with peptide-T in HIV disease had actually, more than a decade ago, run a clinical trial in men with CFS and they saw improvement. And when our paper came out, she said – and I understand why now – she contacted me immediately and said, “We have an opportunity, we have some drug that is ready and certified by the FDA, so it’s a limited amount now, but we could run some small studies and actually follow XMRV. Peptide-T is known to interact with the monocyte, which is a cell type in your innateimmune response, that’s known to be infected in, and actually play a role in retroviral diseases. And as we mentioned, that was my PhD thesis. So, we actually had some sound scientific rationale to actually use peptide-T in this cohort with XMRV.Cheney – I’d like to explore another sort of generic issue and that has to do with testing. And beyond that, the recent reports out of the United Kingdom of negative results for the testing by PCR of blood in CFS patients. And beyond that, the fact that some patients who have been tested at VIPdx Laboratories in Reno using the WPI, Whittemore Peterson validated testing procedures are also negative. And so, I’d like you to comment a little bit about the reasons why you can get negative results and importance of methodologies.
Judy – The methodologies are really critical in studying XMRV because there’s as much that we don’t know about it as we do know about it. It is apparent from the UK studies as well as the German study in prostate cancer who looked at more than 500 samples and didn’t find XMRV either by PCR and some other techniques, it is clear that what we don’t know about the virus with regard to is – it’s reservoirs – what cells it’s living in, where it is in the body. As much as we do know about the virus, so unless you use all four techniques in the Science paper for isolating it and determining the presence of the virus - in that case, failure to detect it by PCR does not mean it’s not there. And even by the culture method that is used by VIPdx right now, we are working very hard to get the serology, which means that the patient would have had an immune response to the virus and we can detect that serologically in our paper, but we don’t have that test online yet as a diagnostic or a clear certified test yet, but we hope to have that test within the next month or so, as I’ve said, maybe within weeks, to be validated for clinical use. If you went just by the virus – that is, I can’t isolate it or VIP can’t isolate it by the techniques in our paper, and you have the antibody, it is evidence that you’re infected and since the retrovirus is a lifelong infection, we simply then just don’t know the reservoir where this virus is. So this is a very low copy number, meaning it is very low level in peripheral blood. And really, unless you use all four techniques that are described in our Science paper, and go to the WPI website where we have detailed the differences in the methodologies in the different studies to give you an idea of the complexity of the issues, but also what’s necessary to detect the virus. So, we will, very shortly, have all of the testing available.

Videos worth watching if you have Neurological, Phsychiatric or Rheumatological symptoms

If you have, like me been diagnosed with Fibromyalgia do have a look at the following videos through the links I have posted. With all the controversy over many of our illnesses and especially Lyme disease we need to be well informed.

The same can apply to patients with a ME/CFS diagnosis, especially as research shows that many of them do indeed have Lyme Disease complicating their illness.

Poly Myagia Rheumatica was another of my mis diagnosis and as my post of yesterday explains can indeed be a mis diagnosis of Lyme Disease.

Lyme Disease has been found in patients with most Neurological illnesses ALS, MN, MS, That is not to say the reverse that everyone has Lyme Disease just how many are properly investigated for it in view of the problems over testing.

Lyme Disease can be found in Rheumatolgical illnesses it can be the cause of Arthritis in the young and the old. It was the high numbers of Juvenile Rheumatoid Arthritis in a group of children in Old Lyme Connecticut that led Polly Murray to get doctors to investigate the strange illness which in turn led to the discovery of what we now know to be Lyme Disease.

Lyme Disease can also cause Psychiatric symptoms from mild depression to major psychiatric disorders. Dr Bransfield the current President of ILADS has presented much research in this field. His research on Lyme Induced Autism is ground breaking. See Lyme induced Autism Foundation


Thanks to Marlyn Kerr of Lyme Advocate blog for posting the videos from the Boston Chronicle Feb 14, 2010

http://www.thebostonchannel.com/video/19245192/

http://www.thebostonchannel.com/video/19245218/

http://www.thebostonchannel.com/video/19245302/

The videos include old a new footage a lot of which I have not seen before.

POLY MYALGIA RHEUMATICA

I was diagnosed with Fibromyalgia, ME/CFS and then Poly Myalgia Rheumatica after a sudden illness left me with severe arthritis and muscle weakness starting in my upper arms and upper legs. My GP suspected Poly Myalgia Rheumatica and a gave me steroids which immediately relieved the symptoms thus supporting her clinical diagnosis. My SED rate was 27 although earlier tests the year before were 8.

The rheumatologist I eventually saw whilst on a high dose of steroids (so was much more able to move), did not agree that it was Poly Myalgia Rheumatica he said my Sed rate would be about 75. He wacked a steroid injection in my hip before I quite figured out what he was doing. (It did not improve my symptoms).When I asked if my illness could be stress related he said, give up work. Yeah like on 1/5 of his income I could afford to just give in my notice, especially as I had already reduced my hours to cope.

He was the most arrogant and the rudest man I had occasion to talk to in my life. He did not accept my symptoms were all over in every joint and my body felt heavy and weak. He treated me for a sprain in my hip which he said could affect other joints causing Fibromyalgia and that I should come straight of steroids in very large reductions, within just a few weeks. What had I done wrong that made him so cross with me, perhaps it was me being on steroids or was it just his lack of understanding. I didn't ask to go on steroids and now I understand more, I wish to goodness I had not been put on them but I realise it was an honest mistake on behalf of my GP.

The result of even the first reduction of steroids was I had difficulty standing again or walking across a room. My GP said it was possible to have Poly Myalgia Rheumatica and a low SED rate, so she continued treating me on steroids.

It was a year later whilst still struggling to get off steroids, really struggling that a chance course of antibiotics improved my symptoms and led my GP to suspect Lyme Disease. The records showed when I had attended the surgery with Bites, bulls eye rashes and summer flu followed by migrating arthralgias and there had been other cases of Lyme Disease at the surgery confirmed by NHS blood tests.

Two other Rheumatologists had failed to diagnose my illness one insisting I had ME/CFS and the improvement on antibiotics were imaginary! I think not.

I came across an article written by Dr Virginia Sherr All-Overish-ness what a brilliant way to describe how I felt and many of you with ME/CFS or Fibromyalgia or Arthritis or Poly Myalgia Rheumatica will be able to also identify with what she says. (Her website has been hacked so link not available)

'It's the All-overish-ness, Virginia, the All-overish-ness."
A cadre of medical specialists thought his might be a case of Polymyalgia Rheumatica but the usual blood work was normal. With a sense of finality he insisted that I be satisfied with his version of a diagnosis whenever I asked him what was wrong. He always spoke as if I, a physician, certainly should understand as meaningful, this obvious, accurate label. At that time I could not; 10 years later I believe I do understand because I have experienced the All-overish-ness, myself.'
and
'I thought about the All-overish-ness Syndrome again. I had been sure that the new mattress that my husband and I had purchased was defective. It was so firm, I thought, that it made my hips ache. But when the aching spread to my hands and to my ankles, it became more difficult to blame the mattress.'

For years my hips were so painful that even two duvets between myself and the mattress did not enable me to lie on either side. So much in Virginia Sherr's article, I can identify with.

I recently posted my story on a Poly Myalgia Rheumatica patient support website here

I received an interesting reply, the story has not yet been uploaded because of work being done on the website but what the person said was much food for thought.
'What an interesting story. There was a survey done last year in Devon and Cornwall by a rheumatology clinical research Fellow of all people diagnosed with PMR. Less than 50% had PMR!will put your story on the web.'

Why so many different diagnosis and yet one possible cause Lyme Disease?Lyme Disease is ruled out by blood tests that can miss up to 50% of cases that is if you are lucky enough to even get a blood test. Well when you have read much, much more about Lyme disease from www.ilads.org you will start to understand that it can be the cause of many chronic health problems but because of controversies our health departments are only looking at a small part of the available research and missing out on the considerable research that supports ILADS views.

Science Journalist, Author Pamela Weintraube has written some very insightful articles on Lyme Disease links found on my side bar but also she wrote an amazing book Cure Unknown Inside The Lyme Epidemic. This book helps us to understand how the controversies have allowed medicine to be so skewed, that thousands of patients are not being diagnosed properly or receiving timely treatment that can help them, usually in the form of simple but long term antibiotics.

Pam Weintraube also interviewed Dr Virginia Sherr it is in three parts
part I https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-i
part II https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-ii
part III https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-iii

A local woman I spoke with recently, a nurse, raised her eyebrows when I mentioned Poly Myalgia Rheumatica. She said it is the 'in diagnosis there are so many people now in Surrey being diagnosed with Poly Myalgia Rheumatica'. Well I wonder how many of them too could in fact have Lyme Disease especially as I now know about a dozen other people in my town of Guildford being treated and getting better from Lyme Disease following ILADS guidelines.

MAD,BAD WORLD OF ME/CFS AND LYME DISEASE

Mad bad World of Lyme Disease was an expression I heard recently, it was in connection with Alex Wade's diagnosis of Lyme Disease, details on Alex Wade's blog Surf Nation.

Alex has had 4 positive NHS blood tests for Lyme Disease over recent months, 7 months of EM rash photos posted on his website and 2 months Doxycycline on NHS, way beyond the standard two weeks recommended.

Alex's rash is still visible, according to my understanding the EM rash is diagnostic of Lyme Disease by CDC. Even by IDSA standards, with Alex on going Neurological symptoms this should mean 1 month of IV antibiotics, which as the HPA guidelines follow these guidelines should be what Alex is given.

Once again Alex is given the run around, now the HPA are suggesting that perhaps all his 4 positive tests done by them in their labs, which are considered the gold standard are all false positives. (no other labs test results are accepted by HPA in the UK for Lyme Disease other than HPA ones).

As Alex grapples to understand what is going on it is painful for those knowledgeable about Lyme Disease to stand back and watch without trying to help. Alex's recent post says he is getting about 150 e mails a day mainly about Lyme Disease. No one who has struggled with Lyme Disease would want another person to struggle untreated through what we have struggled through.

I was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica and then eventually my GP suspected Lyme Disease which was later confirmed by a clinical diagnosis. On long term antibiotics I have my health and life back.

I joined a chat line Euorlyme and regularly 'converse' with other people who like me were diagnosed with ME/CFS but then found that it was in fact Lyme Disease.

I also follow other ME/CFS blogs but time and again I see that patients have so many symptoms that could be Lyme Disease, but are either refused testing or get negative test results and so their doctors and they dismiss the possibility of Lyme Disease, without properly getting checked by Lyme Literate Medical Doctors (LLMD). It is such a waste of lives to go undiagnosed properly and not treated for a condition that can be treated and symptoms relieved. Many top Lyme doctors and ME/CFS doctors recognise the overlap with these illnesses, something I have posted about before.

For many of us who have beaten Lyme or helped our loves ones through this illness it is heartbreaking watching others fall through the cracks,(more like chasm) knowing all we can do is raise awareness and advise about the considerable research available that supports ILADS treatment. Sometimes it can take months before people listen and do indeed follow up, by seeking a diagnosis from doctors specialising in Lyme disease. Those wasted months can be crucial in fighting this illness, which was described at the IDSA review hearing last July as a formidable bug.

Don't be fooled by Lyme Disease, extract from Scratching the Surface 'The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.' Who ever heard of treating either of these illnesses with two weeks antibiotics?

Judith Miklossy research says 'Even in the doubt of tuberculosis it is obligatory to treat patients with "tritherapy" for 6 months. It should be an example for the future treatment of Lyme disease. Such treatment, in analogy to tuberculosis and syphilis will substantially prevent extensive healthcare costs in the future.'

One day those who have a stranglehold on this illness will be exposed and medicine will at last move forward saving thousands of lives from carnage, meanwhile be your own best advocate and get informed.

For more information visit Lyme Disease Action charity website

HEALTHY EATING

During my extensive reading about Lyme Disease and ME/CFS I have often heard mention of Dr Sarah Myhill and have occasionally looked at her site but only briefly.

I am well aware that attention to diet is important particularly when suffering with Lyme Disease and or ME/CFS and have read Dr J J Burrascano Guidelines many times although I have not been good at following his advice about diet. My LLMD tries very hard to encourage me to follow a better diet particularly low on carbohydrate and sugar two of my worst weaknesses. My third weakness dairy may well be the reason for my many years of sinus problems which are currently improving since reducing my dairy intake.

I came across a link into Dr Myhill’s website today thanks to Hedge http://www.tiredofme.com/
The first thing I read was about allergies and colicky babies, how I wish I had read this 30 years ago when I desperately tried to calm my colicky daughter. Food for thought as she spent her childhood with sinus problems which caused sleeping problems up to the age of 8 and now as an adult constant allergies.
http://www.drmyhill.co.uk/
There is much wisdom, we can all benefit from looking at Sarah Myhill’s website.

Below are extracts from Burrascano Guidelines http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
found through www.ilads.org

‘If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention
must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise
programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food
sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no
immunosuppressants, even local doses of steroids (intra-articular injections, for example)’.
‘INTESTINAL TRACT: An overgrowth of yeast here will ferment dietary sugars and starches, forming acids, gas,
alcohols and a variety of organic chemicals. Symptoms include gas, bloat, heartburn and/or pain in the
stomach area, and because of the organic chemicals, there can be headaches, dizziness, lightheadedness,
wooziness and post-meal fatigue. To clear intestinal yeast, first the tongue and mouth must be cleansed so
yeast does not reenter the system with every swallow. Next, since yeast germs feed on sugars and starches,
follow the low carbohydrate diet outlined below. Finally, to replenish the normal, beneficial microbes, eat PLAIN
yogurt daily, drink Kefir, 4 ounces daily, and/or take acidophilus, 2 capsules three times daily after meals.
YEAST CONTROL DIET- restricted carbohydrate regimen
UNRESTRICTED FOODS
All protein foods, such as meat, fish, fowl, cheese, eggs, dairy, tofu
RESTRICTED FOODS
FRUITS
Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of
fiber, this may make up for the sugars to some degree. Thus:
· Fruits are only allowed at the end of a meal, and never on an empty stomach
· Only high fiber fruits are allowed
· Only very small amounts!
EXAMPLES:
ALLOWED IN GENEROUS AMOUNTS
Grapefruit, lemons, limes, tomatoes, avocado
ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially
makes up for the carbohydrates)
Pears, apples, strawberries, cantaloupe, etc.
NOT ALLOWED (These soft fruits do not have enough fiber)
Oranges, watermelons, bananas, grapes, etc.
No fruit juices either!
VEGETABLES
Green vegetables and salads are O.K. Avoid or limit starchy vegetables (potato, rice, beans, etc.) and avoid
pasta.
STARCHES
None!! If it is made from flour- any kind of flour- it is not allowed. (No breads, cereals, cake, etc.)
SWEETENERS
NOT ALLOWED
No sugars at all, and no fructose or corn syrup
ALLOWED (if tolerated)
Stevia (safest), honey, and Splenda,
Aspartame (NutraSweet, Equal) may not be tolerated by some patients
Saccharin products are not recommended
DRINKS
ALLOWED
Water, seltzer, caffeine-free diet sodas, coffee and tea without sugar or caffeine, vegetable juices
NOT ALLOWED
Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups
No Alcohol at all
OTHERS
Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small
portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken,
must be totally carbohydrate free!’

Now I have recovered so well from my ME/CFS which turned out to be Lyme Disease I should really start to take my diet in hand and follow the advice of these two excellent doctors.

Below is a link into Rachel’s blog Raising awareness for ME/CFS in May 2010
http://meaware.wordpress.com/2010/02/15/blogging-for-mecfs-awareness-2010/

BRAIN FOG TO COGNITIVE DYSFUNCTION

From Brain Fog to Cognitive dysfunction and many stages in between, a quick look through Google will show the many possible causes such as chemical sensitivity, allergies, hormonal, infection and many more.

ME/CFS NICE guidelines say - Concentration and memory difficulties (‘brain fog’) are, however, typical.
http://www.nice.org.uk/nicemedia/pdf/CG53FullGuidance.pdf page 176

Arthritis and Fibromyalgia Arthritis Today - Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that can occur with fibromyalgia.
http://www.arthritistoday.org/conditions/fibromyalgia/all-about-fibro/fibro-fog.php

MS According to the Mutiple Sclerosis Resource centre ‘It is reported that 50% of people with MS admit to experiencing cognitive problems to some degree or another, rising to 80% if we include the most severe cases.’
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1272

ALS or Motor Neurons also known as Lou Gehrig’s disease an interesting case study. In 2003 Dr Martz fell ill and some months later was diagnosed with ALS and given 6 months to live. Diagnosed and treated for Lyme Disease he recovered and opened a clinic specialising in patients with ALS. Details of his story can be found on Canadian Lyme Disease Foundation
http://www.canlyme.com/gazette_martz_2006.html
Dr Martz presented at the 2009 ILADS conference and in June 2010 he will be presenting at an ILADS conference in London details to be announced.
www.ilads.org

Autism Charity Lyme Induced Autism ‘The goal of this organization is to provide education, awareness and research into an infectious based cause of autism. Yes..Lyme/borrelia is our PRIME suspect, but we realize that this is multiple infections happening on a disabled immune system and these infections can be triggered by many factors including but not limited to vaccines, chemicals/pesticides, electromagnetic frequency and a whole host of environmental factors. When we consider all options, only then will our kids be able to begin improving.’
http://www.lymeinducedautism.com/

Alzheimer’s Much interesting research has been done by Judith Miklossy Alzheimer's Disease -Emerging role of Infections.
‘The realization that pathogens can produce slowly progressive chronic diseases has resulted in a new concept of infectious diseases.’
‘It has also been known from a century that chronic bacterial infection can cause dementia’
‘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.’
http://www.miklossy.ch/401/index.html

I heard Dr Robert Bransfield President of ILADS present at the Lyme Disease Action conference in 2008 and his comments on brain fog and cognitive dysfunction were particularly revealing and well worth reading whatever illness you happen to have.
http://www.lymediseaseaction.org.uk/conf2008/bransfieldneuro.pdf
http://www.lymediseaseaction.org.uk/conf2008/bransfieldchronic.pdf

I write this to be thought provoking, not to suggesting that everyone with the above illnesses are as a result of infection.

Certainly with the state of the Medical Controversy over diagnosis and treatment of Lyme Disease and it’s many co infections most people are clearly not being properly assessed to see if they are infected. If blood tests for Lyme Disease are taken most doctors are led to believe that they are 100% reliable when research shows that they can miss up to 50% of cases. http://www.ilads.org/lyme_disease/lyme_slides.html

Then there are the other known pathogens and what of those pathogens yet still unknown?