Friday, 17 February 2017

CANADA FIGHTS BACK - LYME DISEASE Please help.

Ticking Lyme Bomb in Canada. YOU are at RISK. Sign now!




Lyme disease is one of the fastest spreading infectious diseases in the world.

Please sign this petition by March 1, 2017 asking the Canadian Government to reject the current draft Action Plan (Framework) for Lyme disease and FIX IT.

 The Framework must recognize the seriousness of this disease for all of us.

 Time is ticking. Canada has NO Plan.

https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

Sunday, 5 February 2017

A CALL FOR CULTURE TESTS FOR LYME DISEASE AND ALL BORRELIOSIS

Lyme disease, or Lyme borreliosis, in North America is a group of systemic infections which may be caused by Borrelia burgdorferi sensu lato (including B. mayonii) [2], B. miyamotoi [3-5], and other unnamed tick-borne borrelia strains [3, 6]. Currently the diagnosis of emerging or reemerging infectious diseases largely depends on finding evidence of the causative agents, including borrelia, in the host by nucleic acid-based tests [7]. The accuracy of any diagnostic tests must be measured against this standard of microbiological diagnosis. Using a serologic test kit developed for the detection of antibodies against the epitopes of B. burgdorferi sensu stricto strain B31 will fail to diagnose most Lyme borreliosis patients in the first two weeks of acute infection and probably all clinical Lyme borreliosis cases caused by a strain of borrelia other than B. burgdorferi sensu stricto B31 at any stages of the disease. The inherent inaccuracy of serologic tests for Lyme disease can be compared with that of the Widal test for the diagnosis of typhoid or paratyphoid fever (Salmonella infections). A comment extracted from a Centers for Disease Control and Prevention (CDC) document is copied as follows [8]. “The Widal test is unreliable but is widely used in developing countries because of its low cost. It is a serologic assay for IgM and IgG to the O and H antigens of Salmonella Typhi, but is not specific and false positives may occur. Acute- and convalescent-phase titers are more sensitive than a single serum sample. Newer serologic assays for Salmonella Typhi infection are occasionally used in outbreak situations, and are somewhat more sensitive and specific than the Widal test, but are not an adequate substitute for blood, stool, or bone marrow culture.” 

The above is an extract from Sin Hang Lee, F.R.C.P.(C) Director, Milford Molecular Diagnostics Laboratory comments on a recent published article - “The Accuracy of Diagnostic Tests for Lyme Disease in Humans, A Systematic Review and Meta-Analysis of North American Research” by Lisa A. Waddell and colleagues

My earlier post https://lookingatlyme.blogspot.co.uk/2017/01/over-reliance-on-lyme-disease-tests.html also refers to this, which was discussed by Mary Beth Pfeiffer investigative journalist in a Huffington post article http://www.huffingtonpost.com/entry/flunk-the-lyme-test-just-wait-and-get-sicker_us_5873ef2fe4b08052400ee537?


Dr Lee's detailed comments can be read in full at  https://canlyme.com/2017/01/31/canadian-tax-payer-funded-lyme-research-not-good-value-for-dollar/

Dr Lee finishes his comments by saying :-

To overcome the low sensitivity of LD diagnostic tests in patients with early LD at the spirochetemic stage, we must first acknowledge a need to develop direct detection tests for Borrelia burgdorferi and related borrelia species known to cause Lyme borreliosis in North America. To survey the existent useful direct detection tests which may not have been published due to global editorial censorship by the mainstream medical journals, it is recommended that blind-coded simulated blood samples spiked with various species of known borreliae or blank be distributed by government regulatory agencies to all clinical laboratories performing Lyme disease testing for a bacteriology proficiency survey, as routinely conducted by the College of American Pathologists for Neisseria gonorrhoeae. The laboratories which return the correct answers would be invited to further develop a generally accepted diagnostic protocol to be used by hospital laboratories located in Lyme disease-endemic areas. To be of use for timely patient care, the results must be generated within 5 working days, preferably in 48 hours. I believe this technology is already available. The first step to the Lyme disease solution is to cut out the tribalism among the scientists whose careers were built on Lyme disease research. 

Tuesday, 10 January 2017

OVER RELIANCE ON LYME DISEASE TESTS CAUSES HEALTH BURDEN

Flunk the Lyme test? Just wait and get sicker 


"Sin Lee, a pathologist and scientist, believes the deck is stacked in the quest to air new ideas on Lyme disease.
Too many science journals telling him to take his research elsewhere. Too many deftly worded rejections. Too little inclination to engage in a fair fight over the facts and fiction of Lyme disease.
Dr. Lee’s experience is shared by many researchers I have interviewed, in the U.S. and Europe, in five years of writing about a disease on which scientific debate is limited and tightly controlled. Some 380,000 Americans were infected with the tick-borne spirochete in 2015, leaving 20,000, by conservative estimates, with unresolved joint pain, cognitive lapses, fatigue and other problems. Another 232,000 are estimated to be infected annually in Western Europe. Many suffer because of a poor test and delayed diagnoses, issues that have been largely dismissed in mainstream journals."
Go to this link to read this excellent in depth article in full -
Thanks to the Huffington post for publishing this article written by Mary Beth Pfeiffer investigative journalist who is writing a book, 'The First Epidemic,' on the global spread of ticks and the diseases they carry.

Lyme disease reporting by Mary Beth Pfeiffer
September 7, 2016: CDC Says Fewer Suffer After Lyme Disease. Doesn’t Say, If Treated Early.

July 16, 2016: Go-To Lyme Drugs Don't Always Kill The Bug

May 30: 2016: ‘Quiet Plague’ Claims Another Celebrity
April 5, 2016: Lyme Time Is upon Us Again
Major installments in Poughkeepsie Journal series No Small Thing, 2012-2015
August 19, 2012: Lyme disease: Antibiotics Fuel Debate

October 21, 2012: Flunking the Lyme disease test Dicey path to Lyme diagnosis Centers for Disease Control says tests 'almost always' correct, but the pitfalls are many  

CDC researcher answers questions on disease, tests 

November 18, 2012: Counting the Lyme disease toll; Cases soar in the Northeast; CDC admits undercounting but declines 'epidemic' labelhttp://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-counting-imprecise/6698009/

December 23, 2012: Babesiosis and the blood supply: Tiny tick, big threat http://www.poughkeepsiejournal.com/story/news/health/2014/03/24/lyme-babesiosis-threat/6699087/

December 24, 2012: The next tick scourge:Dutchess at center of rising tick threat http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-dutchess-tick-threat/6699395/
2013
May 19, 2013: Chronic Lyme disease: Is it real? 
Sidebar: Lyme emails request took five years; officials blame scope and fee waiver

Sept. 15, 2013: Doctors Bucking Lyme Protocols

Sept. 22, 2013: Battle shifts over Lyme disease 

Oct. 6, 2013: Lyme deaths: 9 in N.Y., 5 in valley

Dec. 23, 2013: Sudden Death: Beacon father, husband, 38, is 1 of 3 killed by Lyme disease heart condition; warning issued
2014
Aug. 4, 2014: Dogs, horses show high rates of Lyme disease
http://www.poughkeepsiejournal.com/story/news/investigations/2014/08/02/bitten/13313003/

Aug. 5, 2014: Lyme Disease Treatment Cost Soars
2015
May 31, 2015 Review of Lyme disease treatment leaves out patients

Tuesday, 22 November 2016

ARE LYME DISEASE TESTS ACCURATE?

Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy

Michael J Cook,Basant K Puri2

1Independent researcher, Dorset, UK; 2Department of Medicine, Hammersmith Hospital, Imperial College London, London, UK

Abstract: The clinical diagnosis of Lyme borreliosis can be supported by various test methodologies; test kits are available from many manufacturers. Literature searches were carried out to identify studies that reported characteristics of the test kits. Of 50 searched studies, 18 were included where the tests were commercially available and samples were proven to be positive using serology testing, evidence of an erythema migrans rash, and/or culture. Additional requirements were a test specificity of ≥85% and publication in the last 20 years. The weighted mean sensitivity for all tests and for all samples was 59.5%. Individual study means varied from 30.6% to 86.2%. Sensitivity for each test technology varied from 62.4% for Western blot kits, and 62.3% for enzyme-linked immunosorbent assay tests, to 53.9% for synthetic C6 peptide ELISA tests and 53.7% when the two-tier methodology was used. Test sensitivity increased as dissemination of the pathogen affected different organs; however, the absence of data on the time from infection to serological testing and the lack of standard definitions for “early” and “late” disease prevented analysis of test sensitivity versus time of infection. The lack of standardization of the definitions of disease stage and the possibility of retrospective selection bias prevented clear evaluation of test sensitivity by “stage”. The sensitivity for samples classified as acute disease was 35.4%, with a corresponding sensitivity of 64.5% for samples from patients defined as convalescent. Regression analysis demonstrated an improvement of 4% in test sensitivity over the 20-year study period. The studies did not provide data to indicate the sensitivity of tests used in a clinical setting since the effect of recent use of antibiotics or steroids or other factors affecting antibody response was not factored in. The tests were developed for only specific Borrelia species; sensitivities for other species could not be calculated.

Just published by Dover Press with links to full article:-

Thursday, 27 October 2016

LIVING WITH LYME DISEASE - IRISH DOCUMENTARY





Published on Oct 29, 2016
This documentary was aired Tuesday October 11th 2016 on IrishTV.

It is the compelling story of people affected by Lyme disease in Ireland.

Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by bacteria of the Borrelia type.

Lyme disease is a bacterial infection typically transmitted through the bite of an infected tick. It is one of the fastest growing infectious diseases in the world.

2016 Lyme Conference In May 2016, Ireland's 2nd Lyme conference brought together doctors & patients. European speakers attended & was a great success. This 18 min video captures the atmosphere perfectly (including interviews with speakers & patients). https://www.youtube.com/watch?v=iQmeg...

Living with Lyme Disease - Irish documentary team looking for backers, take a moment to watch the video, it's heart wrenching. https://youtu.be/JpYHF43ZG4I

Check out Tick Talk's survey results, now updated for 2016! http://www.ticktalkireland.org/survey...
In May (Lyme awareness month) Tick Talk volunteer Ann Maher hosted Ireland's 2nd Irish Lyme disease conference, plus talks were held in a ladies group in Galway & a school in Wicklow.

Dublin Inst of Technology student Natalia Marzec set her photographic display to the subject of Lyme disease plus a new article written by Tick Talk, has been published by MyKidsTime. https://www.mykidstime.com/for-parent...

From the Health Protection & Surveillance Centre in Dublin: We are planning to hold Lyme Awareness Week 2016 on the week beginning Monday 2nd May. As usual we will be having HSE Communications alert media outlets about Lyme Awareness Week and will be seeking interviews to raise awareness at this important time.
The Lyme subcommittee task force (on lyme prevention & surveillance) will be publishing their full report during Autumn 2016....

New single released by an Irish Lyme sufferer to help raise funds for her treatment & raise more awareness in Ireland http://elainefightslyme.com/

Read also: Councillor calls for signs highlighting dangers of Lyme disease as former Kerry footballer undergoes treatment http://www.independent.ie/irish-news/...

Read also: Kerry may erect signs amid risk of Lyme disease http://www.irishexaminer.com/ireland/...

Read also: http://kclr96fm.com/hse-blasted-lack-...

Latest news: December 1st the Matter Hospital will no longer send bloods to labs for testing for the following : Anaplasmosis, #Babesiosis#Bartonella, Brucella, Chlamydia pneumonia, Q Fever or #Rickettsiae. The reason? Why, its budget of course! https://www.facebook.com/niccistgeorg...

Visit also: http://www.ticktalkireland.org/

See more video's and information about Lyme Disease
here on Lyme Channel: http://bit.ly/1VRWk2j

Wednesday, 26 October 2016

STIFF PERSON SYNDROME AND LYME DISEASE

Stiff Person Syndrome or Stiff Man Syndrome as it was previously called.

From the National Organization of Rare Disorder NORD :-

'Stiff-person syndrome (SPS) is a rare acquired neurological disorder characterized by progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms. Spasms may occur randomly or be triggered by a variety of different events including a sudden noise or light physical contact. In most cases, other neurological signs or symptoms do not occur. The severity and progression of SPS varies from one person to another. If left untreated, SPS can potentially progress to cause difficulty walking and significantly impact a person's ability to perform routine, daily tasks. Although the exact cause of SPS is unknown, it is believed to be an autoimmune disorder and sometimes occurs along with other autoimmune disorders.
Stiff-person syndrome has been described in the medical literature under many different, confusing names. Originally described as stiff-man syndrome, the name was changed to reflect that the disorder can affect individuals of any age and of either gender. In fact, most individuals with the condition are women. Stiff-person syndrome is considered by many researchers to be a spectrum of disease ranging from the involvement of just one area of the body to a widespread, rapidly progressive form that also includes involvement of the brain stem and spinal cord (progressive encephalomyelitis with rigidity and myoclonus).' 


An all body stiffness was one of my many symptoms which lasted years. The worst was that of rigidity on waking with a reduction in symptoms when painfully flexing every joint large and small. Once diagnosed with Lyme Disease and given long term antibiotics this stiffness gradually went away. I had always assumed it was something vascular maybe inflammation but was interested to read information on SPS and see the two studies published which associated Stiff Man Syndrome with Neuroborreliosis,  Lyme Disease. 


[Syndromes of continuous muscular activity: report of a central case (stiff-man) and a peripheral case (neuromyotonia) associated with neuroborreliosis].

[Article in Spanish]

Abstract

We describe two cases of continuous muscular activity: one which is central (the stiff-man syndrome), and another which is peripheral (neuromiotony), the latter in a patient suffering from diabetic neuropathy and with positive Borrellia burgdorferi serology in the bloodstream, as well as CSF. Both cases reacted favourably to medical treatment. In the first case botulinic toxin was used as a simultaneous treatment for focal pseudodystonia in one foot. Response was good. 
  

 1990 Feb;237(1):51-4.

Borrelia burgdorferi myelitis presenting as a partial stiff man syndrome.

Abstract

Eight weeks after a tick bite, a 33-year-old male patient presented with stiffness of one leg together with spasmodic painful jerks resembling stiff man syndrome. Isolated myelitis of lumbosacral segments of the spinal cord, apparently confined to the grey matter, was diagnosed and its spirochaetal aetiology confirmed by serology and CSF findings. Oligoclonal IgG bands in CSF specific for Borrelia burgdorferi were found. Thus, there is evidence that B. burgdorferi ist able to cause a localized myelitis, probably of spinal interneurons, presenting as a partial stiff man syndrome. 

Saturday, 22 October 2016

NOT ALL ANTIBIOTICS PULSED DOSED ERADICATE BIOFILM LIKE BORRELIA

Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-like Microcolony B. burgdorferi Persisters Which Are Sterilized by Daptomycin/Doxycycline/Cefuroxime Drug Combination without Pulse Dosing

Jie Feng1Shuo Zhang1Wanliang Shi1 and Ying Zhang1*
  • 1Department of Molecular Microbiology and Immunology, Bloomberg School of Public Health, Johns Hopkins University, USA
Although the majority of Lyme disease patients can be cured, at least 10-20% of the patients continue to suffer from persisting symptoms such as fatigue, muscular and joint pain, and neurologic impairment after standard 2-4 week antibiotic treatment. While the causes for this post-treatment Lyme disease symptoms are unclear, one possibility is due to B. burgdorferi persisters that are not effectively killed by current antibiotics such as doxycycline or amoxicillin used to treat Lyme disease. A previous study showed that four rounds of ceftriaxone pulse dosing treatment eradicated B. burgdorferi persisters in vitro using a relatively young late log phase culture (5 day old). In this study, we investigated if ceftriaxone pulse dosing could also eradicate B. burgdorferi persisters in older stationary phase cultures (10 day old) enriched with more resistant microcolony form of persisters. We found that ceftriaxone pulse dosing could only eradicate planktonic log phase B. burgdorferi spirochetal forms and round body forms but not more resistant aggregated biofilm-like microcolony persisters enriched in stationary phase cultures. Moreover, we found that not all drugs are suitable for pulse dosing, with bactericidal drugs ceftriaxone and cefuroxime being more appropriate for pulse dosing than bacteriostatic drug doxycycline and persister drug daptomycin. We also showed that drug combination pulse dosing treatment was more effective than single drug pulse dosing. Importantly, we demonstrate that pulse dosing treatment impaired the activity of the persister drug daptomycin and its drug combination against B. burgdorferi persisters and that the most effective way to kill the more resistant biofilm-like microcolonies is the daptomycin/doxycycline/ceftriaxone triple drug combination without pulse dosing. Our findings indicate pulse dosing may not always work as a general principle but rather depends on the specific drugs used, with cidal drugs being more appropriate for pulse dosing than static or persister drugs, and that drug combination approach with persister drugs is more effective at killing the more resistant microcolony form of persisters than pulse dosing. These observations may have implications for more effective treatment of Lyme disease. Future studies are required to validate these findings in animal models of B. burgdorferi persistence.

http://journal.frontiersin.org/article/10.3389/fmicb.2016.01744/abstract