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EMERGING RESEARCH ME/CFS/LYME DISEASE

Postby Marilyn60 on Mon Aug 19, 2013 10:26 pm

I noted the experts opinions on earlier posts about Chronic Lyme Disease but as there are a growing number of patients who are being diagnosed with ME/CFS and then Lyme Disease and make improvements on antibiotic treatment.
I would like to ask the experts opinions on the recent research done by the James Lind Alliance supported by Dept of Health and HPA/PHE which found that there are many uncertainties over treatment of Lyme Disease.
http://www.lymediseaseaction.org.uk/latest-news/there-are-uncertainties/
also http://www.lymediseaseaction.org.uk/what-we-are-doing/research/
and documented on NHS DUETS Database http://www.library.nhs.uk/duets/SearchResults.aspx?catID=15587&tabID=296

I understand that Porton Down are currently looking at alternative testing, acknowledging that the current tests could be improved. As current tests rely on antibody production there can be many reasons why patients have not made the selected antibodies for the specific strain B31 the tests use( + a couple of extra bands for European species). ie prolonged steroid use for other diagnosis.

As the Bulls eye rash or Erythema migrans is diagnostic of Lyme Disease would your experts not agree that if that rash was not treated in the early stages it could cause a person to progress to a chronic late stage infection?

What is your 'expert' opinion of the work of Judith Miklossy who found DNA for Borrelia in the brains of Alzheimer's patients http://miklossy.ch/
and believes
Newer approaches to the treatment of Lyme disease should take into account the frequent co-infection with other pathogens and the need of a more prolonged combination therapy, as it is the case in the treatment of tuberculosis. Even in the doubt of tuberculosis the treatment of the patients with "tritherapy" is necessary for 6 months. It should be an example for the future treatment of Lyme disease. Such treatment, as it was the case in tuberculosis and syphilis, will substantially prevent extensive healthcare costs in the future.
http://miklossy.ch/473.html
and
Chronic or Late Lyme Neuroborreliosis:
Analysis of Evidence Compared to Chronic or Late Neurosyphilis, 2012; 6: Pp. 146-157
Judith Miklossy
Published Date: (28 December, 2012)

Whether spirochetes persist in affected host tissues and cause the late/chronic manifestations of neurosyphilis was the subject of long-lasting debate. Detection of Treponema pallidum in the brains of patients with general paresis es-tablished a direct link between persisting infection and tertiary manifestations of neurosyphilis.Today, the same question is in the center of debate with respect to Lyme disease. The goal of this review was to compare the established pathological features of neurosyphilis with those available for Lyme neuroborreliosis. If the main tertiary forms of neurosyphilis also occur in Lyme neuroborreliosis and Borrelia burgdorferi can be detected in brain lesions would indicate that the spirochete is responsible for the neuropsychiatric manifestations of late/chronic Lyme neurobor-reliosis.The substantial amounts of data available in the literature show that the major forms of late/chronic Lyme neuroborreliosis (meningovascular and meningoencephalitis) are clinically and pathologically confirmed. Borrelia burgdorferi was de-tected in association with tertiary brain lesions and cultivated from the affected brain or cerebrospinal fluid. The accumu-lated data also indicate that Borrelia burgdorferi is able to evade from destruction by the host immune reactions, persist in host tissues and sustain chronic infection and inflammation. These observations represent evidences that Borrelia burgdorferi in an analogous way to Treponema pallidum is responsible for the chronic/late manifestations of Lyme neuroborreliosis.Late Lyme neuroborreliosis is accepted by all existing guidelines in Europe, US and Canada. The terms chronic and late are synonymous and both define tertiary neurosyphilis or tertiary Lyme neuroborreliosis. The use of chronic and late Lymeneuroborreliosis as different entities is inaccurate and can be confusing. Further pathological investigations and the detection of spirochetes in infected tissues and body fluids are strongly needed.

http://www.benthamscience.com/open/toneuj/openaccess2.htm
Marilyn60
 
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Re: EMERGING RESEARCH ME/CFS/LYME DISEASE

Postby Dr Charles Shepherd on Tue Aug 20, 2013 9:46 am

Marilyn

I'm going to leave this one for Dr Miller because I know he has a particular interest in Lyme Disease

I will, however, repost the info on Lyme Disease from the MEA purple booklet
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association
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Re: EMERGING RESEARCH ME/CFS/LYME DISEASE

Postby Dr Charles Shepherd on Tue Aug 20, 2013 9:51 am

Information on Lyme Disease and ME/CFS from MEA purple booklet:

Lyme disease
The Autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme Disease and consequent dangers of misdiagnosis. The full statement can be found on the MEA website: http://www.meassociation.org.uk/ ?p=697

As of 1st June 2012, the Health Protection Agency’s Lyme diagnostic service is provided by the Rare and Imported Pathogens Laboratory (RIPL), HPA Porton Down.

Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirma- tory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitiv- ity on CSF and antibody detection is the preferred first line test on CSF. PCR is not usually performed on blood as the duration of bacteraemia is short.

RIPL also has capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.

RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to Lyme. RIPL@hpa.org.uk. There is no clinic at HPA Porton and they are unable to see patients or to give telephone advice directly to members of the public.

RIPL website:
http://www.hpa.org.uk/Topics/InfectiousDiseases/ InfectionsAZ/LymeDisease/
This gives details of where patients can be tested for Lyme disease on the NHS.

The ME Association has an information leaflet covering Lyme Disease in more detail - this is written by a consultant microbiologist with a special interest in Lyme Disease.

MEA website: http://www.meassociation.org.uk
Dr Charles Shepherd
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Re: EMERGING RESEARCH ME/CFS/LYME DISEASE

Postby Dr Alastair Miller on Thu Aug 29, 2013 10:01 am

I am well aware of the James Lind Alliance work as I was part of that group which met on several occasions and did a huge review of the LD litereature. As you say we came up with a large list of uncertainties and priorities for research. Hopefully, many of those will be taken forward. At present, however there is no evidence that ME/CFS is caused by Borrelia.
Dr Alastair Miller
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