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talkhealth forums • Chronic Lyme
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Chronic Lyme

Posted: Thu Aug 15, 2013 6:28 pm
by bearingup
I was diagnosed with CFS in 2000 but have a number of symptoms that do not appear to be consistent with CFS/ME. As a child I lived in an area of the UK where Lyme carrying ticks are endemic, had many removed with a cigarette end after playing in the woods, and have clear memories of having the distinctive bullseye rash of Lyme on two separate occasions between the ages of 10 and 14. I was also treated for headaches and had a lot of fatigue from the age of 10 until 16 and was treated as anaemic, though no blood tests were taken. (I am 54). Is there any point in being tested for Lyme disease now, or will any indicators have disappeared long ago?

Is it possible that I may be suffering from some other tick borne illness? I lived in Nigeria for several years and picked up several ticks whilst over there, and suffered an acute illness at one point which was never properly diagnosed.

Re: Chronic Lyme

Posted: Thu Aug 15, 2013 9:56 pm
by bearingup
Thank you for your response, Dr Miller.

I am rather confused. If, as you say, Chronic Lyme does not produce the symptoms of CFS/ME, then how would you explain the following statement on the NHS website?:
Chronic Lyme disease

Chronic Lyme disease is a syndrome (a collection of symptoms) that is experienced by some people who have had Lyme disease.

The symptoms of chronic Lyme disease are similar to those of fibromyalgia or chronic fatigue syndrome, and it is thought that it might be triggered by late-stage Lyme disease. More research into this form of Lyme disease is needed.
http://www.nhs.uk/Conditions/Lyme-disea ... ptoms.aspx

I have a range of symptoms that are not consistent with CFS/ME, but may be consistent with Lyme or conversely some other disease I know nothing about. However, since my diagnosis in 2000 everything I have approached my GP about, from chest pains to skin rashes to swollen joints to migraine has been attributed to CFS and results in the statement 'there is nothing we can do, I'm afraid.'

Re: Chronic Lyme

Posted: Thu Aug 15, 2013 10:17 pm
by Dr Charles Shepherd
Information on Lyme Disease from the MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues

Lyme disease

Doctors have been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place.

Infected ticks are more common in woodland, heathland and moorland in areas such as Exmoor, Lake District, New Forest, Yorkshire moors and Scottish Highlands.

The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans), which spreads out from the bite, usually after about 5-15 days. Other early symptoms can include lym- phadenopathy (= enlarged lymph nodes) and a flu-like illness.

Laboratory evidence should always be sought if the diagnosis seems possible. Diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neuro- logical complications.

Analysis of cerebrospinal fluid from cases of early disseminated Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Angel et al 2012).

Misdiagnosis of Lyme disease: There are also well documented concerns about over- diagnosis and inappropriate management of Lyme disease. A retrospective case note study of 115 adults with suspected Lyme disease who were referred to a UK infectious diseases clinic found that only a minority had Lyme disease; one third had ME/CFS; and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.

Lyme disease diagnostic services

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 confirmatory 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 sensitivity 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 a patient information leaflet on Lyme disease.

Re: Chronic Lyme

Posted: Fri Aug 16, 2013 5:32 pm
by bearingup
Thank you very much for the information, Dr Shepherd. I will show it to my GP and request a test.

I wonder, what are your thoughts on the statement on the NHS website (URL and text in my previous post) that CFS/ME may be triggered by late-stage Lyme?

Re: Chronic Lyme

Posted: Fri Aug 16, 2013 5:51 pm
by Dr Charles Shepherd
I have always taken the view that, where appropriate, Lyme Disease should form part of the differential diagnosis of ME/CFS

Re: Chronic Lyme

Posted: Fri Aug 16, 2013 10:38 pm
by Dr Charles Shepherd
Thanks Alastair

Just to be clear, I am not advocating that Lyme Disease testing should form part of the routine clinical assessment in ME/CFS. Only where appropriate...

And I obviously share your concerns about some of the Lyme Disease tests (and resulting inappropriate use of antibiotics) that are/were available in the private sector