CFS is Lyme Disease

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Cherrypie
Posts: 3
Joined: Wed Aug 14, 2013 4:48 pm

by Cherrypie on Wed Aug 14, 2013 5:13 pm

CFS is Lyme Disease

I have been failed by Medical care provided to CFS patients, and I am finally feeling better after treatment for Lyme Disease, I wasn't even tested for this by the CFS clinic I was lucky enough to get refered to despite the symptoms being the same. It's a shame it took 4 years. Also the CFS clinic failed to inform me of a Vitamin D deficiancy or prescribe Vit D for me. Is anything being done to improve care? The clinic failed to tell me about any of the treatments listed on the me association website as well.

Cherrypie
Posts: 3
Joined: Wed Aug 14, 2013 4:48 pm

by Cherrypie on Wed Aug 14, 2013 5:30 pm

Re: CFS is Lyme Disease

No evidence? When the symptoms are the same and treatment works??

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Dr Charles Shepherd
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Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Thu Aug 15, 2013 9:24 am

Re: CFS is Lyme Disease

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.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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