Why psychologists need to know about Lyme disease

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Why psychologists need to know about
Lyme disease
Sarah L. Marzillier

People with undiagnosed Lyme disease may pres-        cause a wide range of symptoms, including
ent with chronic fatigue, mental health problems,     fatigue, nerve, joint and muscle pain, cardiac
neuropsychological impairments and autistic spec-     problems, neurological problems, difficulties
trum disorders. This article considers the evidence   with mood, concentration and sleep, and
across each of these areas, before discussing how     other psychiatric problems. The course can
psychologists can recognise and support people        be fluctuating, with periods of improvement
with Lyme disease.                                    and periods of relapse. If Lyme disease is not
                                                      adequately treated, infection often persists
                                                      and affects a wide range of systems within the

L
     YME DISEASE     is a bacterial illness spread    body.
      by ticks. It is found all over Europe and
      North America. It is relatively rare in the     Chronic fatigue syndrome
UK, but the number of reported cases is               Donta (2002) argues that Lyme disease is one
increasing (HPA, 2008). It can be compli-             of several infectious causes of chronic fatigue
cated by co-infections, as ticks often carry          syndrome (CFS). He points out the large
other bacteria and parasites that make the            symptom overlap between the two disorders:
disease more difficult to treat. People with          both consist of fatigue, neurocognitive dys-
undiagnosed Lyme disease may end up in                function, muscle and joint pain. There is evi-
psychological services either because of the          dence that Lyme disease can lead to a
psychological consequences of the illness or          chronic fatigue-type illness. Gustaw (2003)
because the symptoms are mistaken for those           found that over 70 per cent of people with a
of other disorders. People may be referred            history of Lyme disease met criteria for CFS.
for cognitive behaviour therapy for chronic           Treib et al. (2000) tested the blood of over
fatigue syndrome, for the psychological               1000 healthy young males and found that men
manifestations of Lyme disease, for neuro-            who tested positive for the bacteria that causes
psychological investigation of their cognitive        Lyme disease showed significantly more
impairments or for assessment of autistic             chronic fatigue than those whose tests were
spectrum disorders. A purely psychological            negative. However, other studies comparing
approach will not be enough to help those             people with CFS and healthy controls did not
with Lyme disease receive appropriate treat-          find that the CFS group are more likely to
ment. Psychologists can play a crucial role in        test positive for Lyme disease (MacDonald et
identifying these people and referring them           al., 1996; Schutzer & Natelson, 1999).
for the antibiotic treatment that may trans-
form their lives.                                     Mental health problems
     Lyme disease is caused by spirochete bac-        Hájek et al. (2002) screened over 900 people
teria similar to the bacteria that causes             who were admitted to a psychiatric centre for
syphilis. In the early stages of infection,           antibodies to Lyme disease. They found that
around 30–60 per cent will have a character-          33 per cent of the psychiatric population
istic bulls-eye rash (Stricker et al., 2005). This    tested positive for Lyme disease, compared to
may be followed by mild to severe flu-like            19 per cent of a similar sized control group.
symptoms. If untreated, the bacteria can dis-             In a review article, Fallon and Nields
seminate to the central nervous system and            (1994) reported studies linking Lyme disease

Clinical Psychology Forum 194 – February 2009                                                      37
Sarah L. Marzillier

with major depression, panic attacks, paranoia,   dence for this theory, reporting several stud-
schizophrenia, bipolar disorder, dementia,        ies that show 20–30 per cent of people with
anorexia nervosa and obsessive-compulsive         autistic spectrum disorders are positive on
disorder. Of course, these problems may           blood tests for the Lyme disease bacteria.
simply be comorbid, or develop as a result of
dealing with an unpredictable complex ill-        Neuropsychological impairments
ness. However, there is reason to believe that    Westervelt and McCaffrey (2002) reviewed the
mental health problems can arise as a direct      literature and found evidence of mostly mild
consequence of Lyme disease. Fallon et al.        deficits in verbal memory (particularly list
(1997) outline three strands of evidence sup-     learning), verbal fluency, upper extremity
porting this view: the frequency of psychi-       fine motor speed/coordination and oral
atric disorders is greater in people with Lyme    agility, and speed of processing – problems
disease than amongst other medical condi-         that are consistent with primarily frontal sys-
tions; many people with Lyme disease              tems involvement. However, people with
develop mental health problems without a          Lyme disease have an idiosyncratic neuro-
prior psychiatric history; and these mental       psychological profile and thus there may not
health problems may improve after antibi-         be a classic neuropsychological pattern asso-
otic treatment alone. Moreover, single pho-       ciated with Lyme disease. These impairments
ton emission tomography (SPECT) studies           seem to be unrelated to the depression often
have shown that people with Lyme disease          found in people with chronic Lyme disease,
typically show multifocal areas of decreased      and evidence suggests that they can improve
perfusion in the cortex and subcortical white     with antibiotic treatment (Westervelt &
matter (see Fallon et al., 1997, for a review).   McCaffrey, 2002).
                                                      In rare cases, Lyme disease can be associ-
Autistic spectrum disorders                       ated with other neurological problems such
Bransfield et al. (2007) have argued that Lyme    as dementia, demyelinating disorders mim-
disease may increase vulnerability for the        icking multiple sclerosis, seizure disorders,
development of autistic spectrum disorders.       hemiparesis, aphasia, ataxia and stroke
They draw on evidence that shows that Lyme        (Westervelt & McCaffrey, 2002).
disease can be passed from an infected                In children, deficits in memory, reading
mother to her unborn child and cause neuro-       comprehension, handwriting skills, speech
logical problems as well as vulnerability to      fluency, mathematics, visual skills and execu-
other infections. These effects on the devel-     tive functioning can all be a result of Lyme
oping body and brain may lead to autistic         disease. Alarm bells may be rung if one or
spectrum disorders. They provide some evi-        more of these problems occurs alongside
                                                  physical symptoms of the illness (e.g. fatigue
                                                  and headaches) or uncharacteristic emo-
                  Resources
                                                  tional or behavioural presentations. Hamlen
     Lyme Disease Action – UK based charity:      and Kliman (2007) note that symptoms often
          www.lymediseaseaction.org.uk            develop in a previously well-functioning
        International Lyme and Associated         child, onset may be gradual, symptoms may
                 Diseases Society:                fluctuate over time and problems can be
                  www.ilads.org                   confused with attention deficit disorder or
     Leaflet - What psychiatrists should know     oppositional defiant disorder.
                about Lyme disease:
     www.ilads.org/PsychiatristBrochure.pdf       The experience of Lyme disease
                                                  The experience of having such a complex
            Eurolyme - Support group:
                                                  and controversial illness can be devastating
         http://health.groups.yahoo.com/          to people and their families. Fallon et al.
                 group/EuroLyme/                  (1992) conducted clinical interviews and
                                                  obtained written descriptions from around

38                                                 Clinical Psychology Forum 194 – February 2009
Lyme disease

200 people with chronic Lyme disease. They         Know what to look for
found that respondents reported that the           The questions below represent a summary of
fluctuating nature of the illness made it diffi-   issues raised in an educational leaflet aimed
cult for people to make plans, for example to      at psychiatrists (Sherr & Solomon, 2004).
try to return to employment. It can confuse        This is not an evidence-based diagnostic
other people as it may seem as though the          measure; the aim is to aid psychologists in
symptoms are under voluntary control or of         their consideration of Lyme disease. Answer-
psychological origin. Many people are not          ing yes to several of the questions below sug-
diagnosed for several years, and during this       gests that it may be worth referring this
period they may believe that they are going        person on for further assessment for Lyme
mad. This view is often confirmed by a refer-      disease. However, every person with Lyme
ral to psychiatry.                                 disease has a different constellation of symp-
    There is great controversy in the medical      toms, and few will answer yes to all of these
field as to how to treat Lyme disease, with the    questions:
Infectious Diseases Society of America             ■ Exposure: Do they enjoy outdoor activities
(IDSA) producing guidelines that claim that            where they may have been bitten by a
a short course of antibiotics always cures the         tick? Do they have a dog or cat?
illness (Wormser et al., 2000). However,           ■ Medical history: Do they have a history of
symptoms can persist or return many years              many different physical symptoms,
later (Logigian et al., 1990), leading other           perhaps with a fluctuating course? Have
doctors to produce guidelines that state that          they experienced a bulls-eye rash, fatigue,
longer term antibiotic treatment is neces-             joint or muscle pain, severe headaches,
sary for some people (Cameron et al.,                  sound or light sensitivity, burning or
2004).                                                 pricking pain, twitches, heart problems,
                                                       word-finding problems, short-term
What psychologists can do                              memory loss, tremors, Bell’s palsy
Psychologists are likely to encounter Lyme             (temporary paralysis of half of the face),
disease before it is diagnosed, and recogni-           shooting pains?
tion of the disease could radically alter some-    ■ Psychological problems: Are these unusual
one’s life. Therefore psychologists should:            or atypical? Is there a lack of a clear
                                                       stressor or psychological precipitant? Is
Have basic knowledge about Lyme disease                there a lack of personal or family history
■ Lyme disease is a bacterial infection                of psychological problems? Were they
  carried by ticks.                                    over 40 years old when problems first
■ People may not remember the tick bite                emerged? If panic attacks are present,
  or show the bulls-eye rash.                          do these last longer than half an hour?
■ It has a fluctuating course, and                     If depression is present, is there marked
  symptoms may not appear for months or                mood lability?
  years.                                           ■ Cognitive problems: Do they report
■ It can cause a wide variety of physical,             problems with memory, attention, or
  cognitive, and psychological symptoms.               concentration? Do they have problems
■ Diagnosis is primarily based on clinical             with conversation, reading, problem-
  symptoms, as laboratory tests produce                solving, decision making? Do they have
  many false negatives.                                slower processing speed?
■ Treatment is through antibiotics, but the
  duration of this is fiercely disputed.           How to support people with Lyme disease
■ People may worsen on initial treatment           Psychologists can help other professionals
  with antibiotics, before improving.              consider whether a psychological formulation
■ People may continue to have symptoms             makes sense or whether a psychological
  after a short course (2–4 weeks) of              origin has been proposed just because a
  treatment.                                       physical disease is not immediately apparent.

Clinical Psychology Forum 194 – February 2009                                                  39
Sarah L. Marzillier

If Lyme disease is suspected, then the person                  Conclusion
can be referred to an Infectious diseases spe-                 Psychologists might see people with undiag-
cialist for further assessment. However, it is                 nosed Lyme disease referred for help with
important to note that Lyme disease is not                     CFS, mental health problems, neuropsycho-
yet well known amongst the medical pro-                        logical assessment or autistic spectrum disor-
fession in the UK, and so it cannot be                         ders. If Lyme disease is suspected, people can
assumed that all doctors will be aware of the                  be referred to the infectious diseases special-
illness and the issues around diagnosis and                    ity for further assessment. As there are many
treatment.                                                     controversial aspects around the diagnosis
    After a diagnosis is made, people may                      and treatment of Lyme disease, people may
continue to require support as the illness is                  benefit from support from other people with
often long and medical advice is conflicting.                  Lyme disease via internet support groups or
Some people may benefit from being                             from other professionals who may require
pointed towards support groups on the inter-                   education about Lyme disease.
net (see the Resources box). Psychologists
may also be able to work with other profes-                    Affiliation
sionals who see people with Lyme disease or                    Sarah Marzillier: Clinical Psychologist
to work directly with groups of people with
Lyme disease. In this way they could help                      Address
others to provide support and teach psycho-                    Dr Sarah Marzillier, 104 Balfour Road,
logical techniques to help people cope with                    Brighton BN1 6ND;
a long and variable illness.                                   smarzillier@hotmail.com

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Lyme disease

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   Division of Clinical Psychology
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Clinical Psychology Forum 194 – February 2009                                                               41
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