I think it is quite difficult for people with ME/CFS to decide whether it is worth investigating the possibility that they have Lyme disease.

I had heard about Lyme disease for around 2 years before I bothered looking into it. I just could not believe that all the tests I'd had could have failed to detect a bacterial infection. On top of which my symptoms met stringent criteria for ME/CFS.

The following article might help some people diagnosed with ME/CFS to identify signs and risk factors for Lyme disease.

Best Wishes,
Peter Kemp

Lyme Disease and ME/CFS

This article is intended for people diagnosed with M.E. and CFS. It aims to help in assessing whether investigating Lyme disease (LD) as a possible feature of their illness is something they might want to do. This is an exercise in possibilities. Only a qualified doctor can diagnose Lyme disease and such diagnosis could be made on symptoms alone, excluding all the factors considered here.

A diagnosis of Lyme disease is not necessarily a simple route to treatment and recovery. Much controversy surrounds testing, diagnosis and treatment of Lyme disease. People who have been ill with ME/CFS who find that they have LD may face lengthy and sometimes gruelling treatment and could have limited potential for recovery. They might also encounter mixed reactions from their GP and other health professionals; this has led some to seek private testing and treatment.

To help with assessing the possibility of Lyme disease featuring in an illness questions are included below. People who find a lot of reading a problem might prefer to skip straight to the section - Summary of Questions. If any of the questions seem relevant, then go back to the main section where the question is found.

Lyme disease is an infection of borrelia bacteria which can present with symptoms similar to those described for ME/CFS and for which routine tests are not always reliable. Even gene studies suggest close similarities between LD and ME/CFS, as Gow et al remark: 'The immune modulation in post-Lyme disease fatigue is remarkably similar to the gene signature presented here for patients with CFS' (1).

UK experts have suggested that the number of reported cases of LD should be multiplied by 10 to indicate its true prevalence. This potentially puts the number of undiagnosed LD patients in the UK at 5-6,000 in 2008. Add the numbers up over several years and there could be a major hidden problem.

Lyme disease has been described as the 'great imitator'. Because of the range of symptoms it has been misdiagnosed as M.E., CFS, MS, Alzheimer's disease, Parkinson's disease, psychological illness etc. It seems likely that at least some people diagnosed with ME/CFS actually have LD.

As well as borrelia bacteria, people with Lyme disease can have coinfections with babesia, bartonella, ehrlichia etc., which can be transmitted by the same tick bite. Information about these and other infections can be found via the links provided below.

Aspects that PWME/CFS could consider in evaluating their risk for Lyme disease:

Tick bite or risk for tick bite
Ixodes ricinus, the sheep tick which also feeds on deer can transmit Lyme disease. The tick larva has a flattened body and is around the size of a poppy seed. It can remain attached to the skin quite painlessly and unnoticed for several days. During this time an infected tick may transmit the bacteria that causes Lyme disease.

Although Lyme disease can be acquired just about anywhere in the UK there are certain places and activities that increase the risk:

Places: Countryside areas, farms, forests, heaths or parks, particularly where sheep or deer are present.

Activities: Forestry or land work, hiking, camping, riding, fishing, hunting, orienteering, birdwatching, etc.

• Q1: Do you recall ever being bitten by a tick?
  
  
• Q2: Have you ever participated in activities in the countryside or other areas where deer could be found?
  
  
• Q3: Do you recall any unusual insect bite that produced an odd rash?

NOTE: Many people with Lyme disease do not recall a tick bite.

Erythema Migrans (EM) rash
Some people with LD have a rash which appears at the site of the tick bite and spreads outwards over days and weeks. It can be so faint as to be hardly noticeable. On light skinned people the rash may be pink to red to blueish in colour, on dark skinned people the rash can resemble a bruise. An EM rash can be misinterpreted as ringworm or allergy and can spontaneously recur years later.

• Q4: Can you recall an unexplained rash or incidence of ringworm that did not respond to treatment?

NOTE: Many people with Lyme disease do not report a rash.

Onset of illness
The Canadian Lyme Disease Association webpage observes:
(http://www.canlyme.com/diagnosis.html)
'Early onset symptoms are fever, malaise (a vague feeling of bodily discomfort or unwellness, possibly nausea), fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia). Many do not get these early symptoms and their first signs may be tingling/numbness, weakness in muscle control, tremors/tics, optic disturbances, memory deficiency (usually short term memory) psychiatric presentations, periods of unexplained anger/rage, headache, neck pain, spinal tenderness, lower back pain, neurologic defined pain/sensations such as hot/cold, either surface or deep, or other such neurologic disorders... '

Wendy Fox describes an interesting concept (2); 'Dr. Burrascano calls it 'the one bite too many theory' as some people can be infected but remain symptom-free until bitten 'once too often' which activates the latent infection.'

This may be of interest to people with ME/CFS who might be able to recall some of the above symptoms occurring before they got severely ill. It is possible that people with a low level borrelia infection are coping with or ignoring low level symptoms but suddenly become severely ill when an extra stressor like an infection or accident occurs.

• Q5: In the months before becoming acutely ill, do you recall any odd illness or vague symptoms similar to those described in 'Onset of Illness'?

Effect of taking antibiotics
When borrelia is killed by antibiotics it releases toxins which can cause very unpleasant symptoms called a Herxheimer reaction. This may be experienced as nausea, headache, weakness, fever, shaking and a general exacerbation of symptoms.

A 'herx' would need to be distinguished from a side-effect of the antibiotic or a chemical sensitivity. If this is possible then a reaction to antibiotics might provide a useful clue.

• Q:6 If you have had to take antibiotics such as Amoxycillin, Doxycycline, Metronidazole etc, since being ill; did they have a very unpleasant effect, much worse than you would have expected or experienced before getting ill?
  

Summary of questions

• Q1: Do you recall being bitten by a tick?
  
  
• Q2: Have you ever participated in activities in the countryside or other areas where deer could be found?
  
  
• Q3: Do you recall any unusual insect bite that produced an odd rash?
  
  
• Q4: Can you recall an unexplained rash or rashes or incidence of ringworm that did not respond to treatment?
  
  
• Q5: In the months before becoming acutely ill, do you recall any odd illness or vague symptoms similar to those described in 'Onset of Illness'?
  
  
• Q:6 If you have had to take antibiotics such as Amoxycillin, Doxycycline, Metronidazole etc., since being ill; did they have a very unpleasant effect, much worse than you would have expected or experienced before getting ill?

If the answer to some of these is 'yes' then it might be worthwhile reading more about Lyme disease. Some links to information are provided below. If the answer to all the questions is 'no' this would not necessarily exclude Lyme disease.

Information about Lyme disease
http://www.canlyme.com (information, includes links to LD testing labs)
http://health.groups.yahoo.com/group/EuroLyme/ (patient discussion group)
http://www.ilads.org (information)
http://www.lymediseaseaction.org.uk (information)
http://www.bada-uk.org (information, includes photo gallery of EM rashes)

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Statement of interests
I have no medical training. I have no affiliation with any organisation mentioned other than being an ordinary member of Eurolyme.
Peter Kemp MA. August 2009.
Comments to: pfkempATSIGNtalk21.com

Thanks to: Denise Longman MSc, PGCE

References
1. Gow, John W., Suzanne Hagan, Pawel Herzyk, Celia Cannon, Peter O Behan and Abhijit Chaudhuri. 2009. A gene signature for post-infectious chronic fatigue syndrome. [Online]. Available at: http://www.biomedcentral.com/1755-8794/2/38. Accessed Aug. 6th 2009.

2. Fox, Wendy. 2005. National Sheep Association, Sheep Farmer. September/October 2005.