If your insurer (or as in some tragic cases your own family) eludes to the fact you are faking it or are exaggerating your symptoms you may want to submit some quotes/sources from this document.
PSYCHOSOMATIC DISEASE, SOMATIZATION
AND
SYMPTOM EMBELLISHMENT
LB- [Reference is made to the many articles on the pathophysiology of the somatic and psychiatric symptoms of Lyme disease. After performing a thorough assessment of the situation, it is then necessary to prioritize which symptoms are the most serious and the ones that contribute most towards preventing recovery.
Effective treatment planning requires combined attention to antimicrobial treatments, psychiatric treatments, healthy lifestyle, exercise, proper nutrition, recuperative sleep, stress management, detoxification strategies, family dynamics, employment or school status, financial issues, legal issues, insurance issues, and sometimes political considerations.
Any highly restrictive or fragmented view of complex disease should be avoided.
There are a number of neuropsychiatric symptom complexes associated with Lyme: cognitive losses, fatigue, circadian rhythm disorders, psychiatric symptoms, and neurological symptoms. Cognitive symptoms, fatigue, and circadian rhythm disorders are often associated with excessive daytime sleepiness and disorders of motivation.
Dismissing patients suffering from any aspect of the chronic tick borne disease illnesses does a disservice to the individual and reflects poorly on the professional.]
~ ~
National Study- “Responses from 2424 patients were included in the [Lyme]study. Half of the respondents reported seeing at least seven physicians before the diagnosis of Lyme disease was made.
Nearly half had Lyme disease for more than 10 years and traveled over 50 miles to obtain treatment. Most respondents experienced symptoms lasting six months or more despite receiving at least 21 days of antibiotic treatment.
A quarter of respondents had been on public support or received disability benefits due to Lyme disease symptoms, and over half had visited an emergency room at least once as a result of these symptoms.” Health Policy. 2011 Jun 13. Healthcare access and burden of care for patients with Lyme disease: A large United States survey. Johnson L, Aylward A, Stricker RB. California LymeDisease Association, Marysville, CA, United States.
“All four NIH sponsored RCTs [Random Clinical Trials] validate the severity of PLDS [Post Lyme Disease Syndrome]. PLDS are as severe as symptoms seen in other serious chronic illnesses, and result in a quality of life lower than for the general population as determined by 22 standardized measures of QOL, including fatigue, pain, role function, psychopathology, and cognition.”
“Studies differ as to the precise cause of PLDS, the most effective treatments, and whether a cure is possible.
But the fact that there is disagreement is not a license for physicians to ignore or turn away patients complaining of PLDS, or to dismiss their symptoms as purely psychosomatic. For physicians, the goal or purpose of treating PLDS should be the same as their purpose in treating other chronic illnesses that result in a poor QOL: vigorous pursuit of a cure, and where a cure proves impossible, amelioration of patients' symptoms and suffering.”
Source: Clinical trials validate the severity of persistent Lyme disease symptoms. Cameron DJ. Med Hypotheses. 2009 Feb;72(2):153-6. Epub 2008 Nov 13. First Medical Associates, Mt. Kisco, New York 10549, USA.
*
“Complex, poorly understood diseases are often considered to predominately have a psychological basis until proven otherwise. Tuberculosis, hypertension, and stomach ulcers were once considered to be psychosomatic.
A failure to make a diagnosis based upon various so-called “objective tests” is not a basis for a psychiatric diagnosis. “
“Many patients are given a psychiatric diagnosis as a result of an inadequate medical exam.”
“Insurance companies are often quick to support the view that an illness has only a psychiatric basis, since they find it easier to evade responsibility for mental illness.“Compensation neurosis,” “symptom magnification,” and “stress” are favorite terms of consultants paid to give so-called second opinions or paper reviews.”
“The mind/body interaction is especially complex when understanding late stage Lyme disease.
Many patients display central nervous system symptoms from late stage Lyme disease; and the cognitive, psychiatric, and neurological symptoms are often the most disabling symptoms. For this reason, this disease was called neuroborreliosis in other places when it was labeled as Lyme arthritis in Connecticut.”
“Late stage Lyme disease has been erroneously diagnosed as psychosomatic,hypochondriasis, malingering, factitious disorder, Munchausen’s syndrome by proxy, Somatoform disorder, hysteria, and conversion disorder.”
“In a typical case of late stage Lyme disease, a person is reasonably healthy throughout most of their life, and then there is a point in time where a multitude of symptoms progressively appear.
The number and complexity of these symptoms may be overwhelming and illness may be labeledhypochondriasis, somatization disorder, or psychosomatic.
However, both hypochondriasis and psychosomatic illnesses begin in childhood and are life long conditions which vary in intensity depending upon life stressors. If a complex illness with both mental and physical components begins in adulthood, the likelihood that this is psychosomatic is very remote.”
Source: All in Your Head? Bransfield, R., MD. Mental Health and Illness, Lyme Alliance. Red Bank, NJ http://www.mentalhealthandillness.com/
*
“Although no single sign or symptom may be diagnostic of Lyme disease in a mental status exam, we instead look for a cluster and a pattern of signs and symptoms that are commonly associated with Lyme disease.”
“Everyone with LE [Lyme] has their own unique profile of symptoms. The assessment of these signs and symptoms is one facet of the total clinical assessment of Lyme disease.”
“There may be difficulty sustaining attention, increased distractibility when frustrated, and a greater difficulty prioritizing which perceptions are deserving of a higher allocation of attention.”
“If we compare attention span to the lens of a camera, we need the flexibility to constantly shift the allocation of attention dependency upon the current life situation. For example, we shift back and forth between a wide angle and a zoom lens focus to increase or decrease acuity of attention depending on the needs of the current situation.
A loss of this flexibility results in some combination of a loss of acuity (hypoacusis), and/or excessive acuity to the wrong environmental perceptions (hyperacusis). Hyperacuity can be auditory (hearing), visual, tactile (touch), and olfactory (smell).”
“Auditory hyperacusis is the most common. Sounds seem louder and more annoying. Sometimes there is selective auditory hyperacusis to specific types of sounds.”
“Visual hyperacusis may be in response to bright lights or certain types of artificial lighting.”
“Tactile hyperacusis may be in response to tight fitting or scratchy clothing, vibrations, temperature and merely being touched may be painful.”
“Olfactory hyperacusis may result in an excessive reactivity to certain smells, such as perfumes, soaps, petroleum products, etc.”
“In LE [Lyme], there is first a loss of short term memory followed by a loss of long term memory very late in the illness. Patients may have slowness of recall with different types of explicit (or factual) information, such as words, numbers, names, faces or geographical/spatial cues. Not as common, there may also be slowness of recall of implicit information, such as tying shoes, or doing other procedural memory tasks.”
“Errors in memory retrieval include errors with letter and/or number sequences. This can include letter reversals, reversing the sequence of letters in words, spelling errors, number reversals, or word substitution errors (inserting the opposite, closely related or wrong words in a sentence.”
“Some LE patients say they feel like they acquired dyslexia or other learning disabilities,which were not present previously. Examples of processing functions that may be impaired in the presence of LE include the following:
Reading comprehension: The ability to understand what is being read.
Auditory comprehension: The ability to understand spoken language.
Sound localization: The ability to localize the source of a sound.
Visual spatial perception: Impairments result in spatial perceptual distortions. One example is microscopia, in which things seem smaller than they really are.”
“A problem associated with visual spatial processing is optic ataxia, in which there is difficulty targeting movements through space. For example, there may be a tendency to bump into doorways, difficulty driving and parking a car in tight spaces, and targeting errors when placing and reaching for objects.”
“Calculation ability: The ability to perform mathematical calculations without using fingers or calculators. Many LE patients describe an increased error rate with their checkbook.
Fluency of speech: The ability of speech to flow smoothly. This function is dependent upon adequate speed of word retrieval.
Stuttering: The tendency to stutter when speech is begun with certain sounds.
Slurred speech: A slurring of words, which can give the appearance of intoxication.
Fluency of written language: The ability to express thoughts into writing.
Handwriting: The ability to write words and sentences clearly.”
“Imagery functions that can be affected by LE include:
Capacity for visual imagery: The ability to picture something, such as a map, in our head.
Intrusive images: Images that suddenly appear which may be aggressive, horrific, sexual or otherwise.
Hypnagogic hallucinations: The continuation of a dream, even after being fully awake.
Vivid nightmares: A tendency towards nightmares of a vivid Technicolor nature.
Illusions: Auditory, visual, tactile and/or olfactory perceptions which are distorted or misperceived.
Hallucinations: Hearing, seeing, feeling and/or smelling something that is not present. In LE, sometimes this takes the form of hearing music or a radio station in the background. Unlike schizophrenic hallucinations, these are accompanied by a clear sensorium, and the patient is aware hallucinations are present.
Depersonalization: A loss of a sense of physical existence.
Derealization: A loss of a sense that the environment is real.”
“Organizing and planning functions that can be affected by LE include:
Concentration: The ability to focus thought and maintain mental tracking while performing problem solving tasks.
“Brain fog”: Described by many LE patients. Although difficult to describe in objective, scientific terms: it is best described as a slowness, weakness, and inaccuracy of thought processes. Prioritizing, organizing, and implementing multiple tasks with effective time management.
Simultasking: The ability to concentrate and be effective while performing multiple simultaneous tasks.
Initiative: The ability to initiate spontaneous thoughts, ideas and actions rather than being apathetic or merely responding to environmental cues.
Abstract reasoning: The capacity for complex problem solving.
Obsessive thoughts: May interfere with productive thought.
Racing thoughts: May interfere with productive thought.”
“It is difficult to explain exactly how Lyme disease causes cognitive impairments. The variability of these symptoms suggests an episodic release of a endotoxin or cytokine which may contribute to the cognitive dysfunction. This is an area where considerable research is needed, and is beyond the scope of this article.”
“The symptoms described are often very difficult for patients to describe, and are difficult for many physicians to understand. As a result, patients with these impairments are sometimes erroneously viewed as being hypochondriachal, psychosomatic, depression, or malingering. These symptoms are real and must be explained: that cannot be discounted as being imaginary.”
Source: Lyme Disease and Cognitive Impairments. Bransfield, R., MD. Mental Health and Illness, Lyme Alliance. Red Bank, NJ http://www.mentalhealthandillness.com/
*
“Neurologic involvement of Lyme disease typically consists of meningitis, cranial neuropathy, and radiculoneuritis, alone or in combination, lasting for months. Neurological findings of Lyme disease. A. R. Pachner and A. C. Steere Yale J Biol Med. 1984 Jul–Aug; 57(4): 481–483. PMCID: PMC2590042
We reviewed thirty cases of acute Lyme disease in the West of Ireland and found neurological syndromes in 15 (50%), with painful radiculopathy (12 patients; 80%) and cranial neuropathy (7 patients; 46%) occurring frequently.”
Ir Med J. 2010 Feb;103(2):46-9. The clinical spectrum of Lyme neuroborreliosis.
Elamin M, Monaghan T, Mulllins G, Ali E, Corbett-Feeney G, O'Connell S, Counihan TJ. Department of Neurology, University Hospital Galway, Newcastle Rd, Galway.
“Neuroborreliosis is a form of borreliosis that affects the central and/or peripheral nervous system. Although it can mimic neurologic and ophthalmologic disorders such as multiple sclerosis and optic neuritis, visual evoked potential (VEP) examination is usually not used in neuroborreliosis diagnostics. … In 33 (40%) patients the VEPs were delayed: motion-onset VEPs were pathologic in 22 (27%) patients, reversal VEPs in 5 (6%) patients, and both VEP types in 6 (7%) patients. The findings suggest that VEP testing (especially the motion-onset VEP testing) can confirm CNS involvement.”
J Clin Neurophysiol. 2006 Oct;23(5):416-20. Motion-onset and pattern-reversal visual evoked potentials in diagnostics of neuroborreliosis.Kubová Z, Szanyi J, Langrová J, Kremlácek J, Kuba M, Honegr K. Department of Pathophysiology, Charles University in Prague, Faculty of Medicine in Hradec Králové, Czech Republic.
“A total of 2055 consecutive vertigo patients were examined in a prospective study in an area endemic for Lyme borreliosis for clinical signs of Lyme borreliosis or serum antibodies against Borrelia burgdorferi. Of these, 41 patients (2%) had positive levels of serum antibodies against B. burgdorferi. … Eight patients were diagnosed as having Lyme borreliosis. This disease is a rare but possible cause of vertigo. Although Lyme borreliosis seems to be a rare cause of vertigo, it must be kept in mind in the differential diagnosis of vertigo.”Auris Nasus Larynx. 1998 Sep;25(3):233-42. Lyme borreliosis--an unusual cause of vertigo. Peltomaa M, Pyykkö I, Seppälä I, Viljanen M.Department of Otolaryngology, Helsinki University Hospital, Finland.
“Along with or months after erythema migrans, cranial neuropathy or Lyme arthritis, the five children developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder. … Despite normal intellectual functioning the five children had mild to moderate deficits in auditory or visual sequential processing.” Pediatr Infect Dis J. 1998 Mar;17(3):189-96. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Division of Rheumatology/Immunology, Tufts University School of Medicine, and the Floating Hospital for Children, Boston, MA, USA.
“Quantitative EEG, flash visual evoked potentials, auditory evoked potentials to common and rare tones, and median nerve somatosensory evoked potentials were obtained from 12 patients with active CNS Lyme disease and from 11 patients previously treated for active CNS Lyme disease.Abnormal QEEG and/or EPs were found in 75% of the active Lyme disease patients and in 54% of the post CNS Lyme disease patients.
Three different types of neurophysiological abnormality were observed in these patients including QEEG slowing, possible signs of cortical hyperexcitability, and focal patterns indicating disturbed interhemispheric relationships.” Clin Electroencephalogr. 1995 Jul;26(3):137-45. QEEG and evoked potentials in central nervous system Lyme disease. Chabot RJ, Sigal LH. Department of Psychiatry, New York University School of Medicine, N.Y., USA.
“Neuro-ophthalmological manifestations occur during the second stage of the illness in extremely variable clinical forms.” Arch Soc Esp Oftalmol. 2003 Jan;78(1):51-4. [Diplopia as the first manifestation of Lyme disease]. Asensio Sánchez VM, Corral Azor A, Bartolomé Aragón A, De Paz García M. Hospital General del INSALUD, Medina del Campo, Valladolid, España.
“A 15-year-old boy had onset of unilateral facial weakness. A few days later, he experienced mild vertigo, double vision, and headache. Examination confirmed a peripheral right seventh nerve weakness in addition to an internuclear ophthalmoplegia.” Pediatr Neurol. 1996 Oct;15(3):258-60. Lyme neuroborreliosis masquerading as a brainstem tumor in a 15-year-old. Curless RG, Schatz NJ, Bowen BC, Rodriguez Z, Ruiz A. Department of Neurology, Bascom Palmer Eye Institute, University of Miami School of Medicine, Florida, USA.
“This study is a retrospective review of charts from 190 patients with confirmed Lyme disease. The diagnosis of CI is based on decreased fusional convergence amplitudes at near fixation.The number of patients with CI was reviewed as well as information on patient gender, age, and symptoms. Seventy percent of patients in this study were female. Ages ranged from 4 to 80 years old. Fifty-three percent of patients with Lyme disease had CI. Symptomatic patients were treated with orthoptic exercises or vision therapy. Conclusions: Patients diagnosed with Lyme disease seem to develop CI. Symptomatic CI associated with Lyme disease seems to respond well to conventional CI treatment.”
Am Orthopt J. 2006;56:147-50. Lyme disease and convergence insufficiency: is it a near fit? Matta NS, Singman EL, McCarus C.
*
Mayo Clinic- Conversion disorder symptoms usually appear suddenly after a stressful event. Common symptoms can include:
*Poor coordination or balance
*Paralysis in an arm or leg
*Difficulty swallowing or "a lump in the throat"
*Inability to speak
Vision problems, including double vision and blindness
Deafness
Seizures or convulsions
Other conversion disorder symptoms include:
*Loss of balance
*Numbness or loss of the touch sensation
*Inability to feel pain
*Hallucinations
*Difficulty with walking
Urinary retention
Source: Conversion Disorders. Mayo Clinic Staff. Mayo Foundation for Medical Education and Research (MFMER). February 3, 2011. http://www.mayoclinic.com/health/conversion-disorder/DS00877/DSECTION=symptoms
National Institutes of Health- “This paper catalogs previously unstudied long-term auditory system sequelae resulting from PTLDS. Our most significant finding was the dramatically reduced loudness tolerance in the presence of either normal or minimally impaired hearing. The clinician is encouraged to consider PTLDS when confronted with these or similar findings in patients having history of Borrelia burgdorferi infection and continued complaints.” Ear Hear. 2003 Dec;24(6):508-17. Audiologic manifestations of patients with post-treatment Lyme disease syndrome. Shotland LI, Mastrioanni MA, Choo DL, Szymko-Bennett YM, Dally LG, Pikus AT, Sledjeski K, Marques A. Hearing Section, Neuro-Otology Branch, National Institute on Deafness and Other Communication Disorders, National Institutes of Health, Bethesda, Maryland, USA
“Typical clinical manifestations of Ménière's disease (vertigo, sensorineural hearing loss and tinnitus) were found in 6/11 patients (54.5%) in the Lyme disease group. The ECoG results indicated that there were 65/91 patients (71.4%) with Ménière's disease and 5 patients (45.5%) with Lyme disease who presented with EH. No statistically significant difference was found between the incidence of different symptoms of Ménière's and Lyme disease. On the basis of these results, patients with Lyme disease should undergo careful examination and investigation, especially in endemic regions. The presence of EH does not exclude the presence of infection with borreliosis as a cause of Ménière's disease-like symptoms.” Acta Otolaryngol. 2002 Mar;122(2):173-8. Use of electrocochleography for assessing endolymphatic hydrops in patients with Lyme disease and Ménière's disease. Selmani Z, Pyykkö I, Ishizaki H, Ashammakhi N.
Department of Ear, Nose and Throat Diseases, Satakunta Central Hospital, Pori, Finland.
“The most prominent unfavourable side effects of adjunct bright-light therapy as compared with trimipramine monotherapy were aggravated sedation, persisting restlessness, emerging sleep disturbance and decreased appetite as well as the worsening of vertigo.” Eur Arch Psychiatry Clin Neurosci. 1997;247(5):252-8. Side effects of adjunct light therapy in patients with major depression. Müller MJ, Seifritz E, Hatzinger M, Hemmeter U, Holsboer-Trachsler E. Depression Research Unit, Psychiatric University Hospital Basel, Switzerland.
“Although research on the use of colored filters or lenses does not appear to support Irlen’s theory of color sensitivity the use of colored lenses has been shown to be effective in treating some cases of convergence dysfunction and may help hypersensitivity to pattern glare (visual fatigue createdby viewing repeated patterns like lines of text) for some readers.46”
In cases of convergence dysfunction, letters can appear to blur, move around on the page orwaver. In addition, visual fatigue occurs when reading.
Because the auditory nerve and the vestibular nerve join to become the 8th cranial nerve in the brain, anything that damages this nerve or the areas of the brain that it innervates will be affected. Therefore it is common to find both auditory perception and vestibular problems together.
Source: Dyspraxia, Apraxia and Dyslexia http://www.braintraining.com/Dyslexia.pdf