Tuesday, 10 January 2017


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/
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
Aug. 4, 2014: Dogs, horses show high rates of Lyme disease

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

Tuesday, 22 November 2016


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


Published on Oct 27, 2016
This documentary 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.

Wednesday, 26 October 2016


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]


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.


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


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.


Tuesday, 18 October 2016


An excellent documentary shown on IrishTV recently on Lyme disease

Published on Aug 31, 2016
Nicci St.George Smith met James and Brian at the 2016 Irish Lyme Disease Conference organised by Ann Maher in conjunction with Tick Talk Ireland

Here they tell her about their journey toward completing their documentary LIVING WITH LYME

Further information from Tick Talk Ireland http://www.ticktalkireland.org/

Saturday, 15 October 2016


The Internet has been a buzz recently with the news that Willy Burgdorfer found patients with Lyme disease their blood showed a strong reaction for the Swiss Agent ( Rickettsia Helvetica)

The ‘Swiss Agent’: Long-forgotten research unearths new mystery about Lyme disease

'At a government lab in Montana, Willy Burgdorfer typed a letter to a colleague, reporting that blood from Lyme patients showed “very strong reactions” on a test for an obscure, tick-borne bacterium. He called it the “Swiss Agent.”
Now STAT has obtained those documents, including some discovered in boxes of Burgdorfer’s personal papers found in his garage after his death in 2014. The papers — including letters to collaborators, lab records, and blood test results — indicate that the Swiss Agent was infecting people in Connecticut and Long Island in the late 1970s.'
'On the top of a stack of documents in his garage was a mysterious note, penned boldly in red ink in the scientist’s unmistakable handwriting. “I wondered why somebody didn’t do something,” it said. “Then I realized that I am somebody.”'
The STAT article can be read at this link:-
'The STAT article reports that both Jorge Benach and Allen Steere now say it is time to take a closer look at Rickettsia helvetica’s role in Lyme disease. Benach says the research “should be done” because public health concerns warrant a closer look.
For patients, looking into pathogenic factors related to persistence in tick-borne disease is long overdue. The failure to note the existence of the Swiss agent along with Borrelia burgdorferi is bacteria in the initial publication about Lyme disease may have set back progress in understanding the pathogenicity of Lyme disease decades.' From Lyme Policy Wonk :-

An interesting angle is that from Lyme MD 

In 2011 this was published:-

First detection of spotted fever group rickettsiae in Ixodes ricinus and Dermacentor reticulatus ticks in the UK. 

Tijsse-Klasen EJameson LJFonville MLeach SSprong HMedlock JM.


A preliminary study was conducted to determine the presence of spotted fever rickettsiae in two species of British tick (Ixodes ricinus and Dermacentor reticulatus). The 16S rRNA gene of Rickettsia spp. was detected in 39/401 (9·7%) of ticks tested, including 22/338 (6·5%) I. ricinus and 17/63 (27%) D. reticulatus. Some positive I. ricinus samples showed 100% homology with Rickettsia helvetica (10/22), and most positive D. reticulatus showed 100% homology with R. raoultii (13/17). Five other Rickettsia spp. were detected exhibiting 96-99% homology. Ticks positive for rickettsiae were collected from various hosts and from vegetation from eight counties across Great Britain. The distribution of R. helvetica in various engorged and unfed stages of I. ricinus suggests that R. helvetica is widespread. R. raoultii was found in questing adult D. reticulatus in Wales and England. This is the first evidence of potentially pathogenic spotted fever rickettsiae in British ticks.

This study suggests the Swiss Agent ( Rickettsia Helvetica ) is widespread in the UK. More research is required to find out what role this infection is having on people sick in the UK following a tick bite.