Our Cognitive Impairments Validated in a Lyme study

Discussion in 'Fibromyalgia Main Forum' started by hopeful4, Jan 5, 2006.

  1. hopeful4

    hopeful4 New Member

    I found this article which describes the cognitive problems I've been experiencing to a "T". I'm not just a little foggy, I am impaired in thinking, talking, focusing, processing, etc.

    When people tell me that they're a little forgetful, too...they just don't understand the impact this has on my/our lives.

    This article could be useful to you to share with your doctor, or your family, or take it to your attorney when filing for SSD!

    To find the entire article go to:

    or google it: "Distinct pattern of cognitive impairment noted in study of Lyme patients" by Marian Rissenberg, Ph.D., and Susan Chambers, M.D.

    It's from the Lyme Times, Vol. 20, January-March 1998, pp. 29-32

    4) Clinical Impressions and Implications for Diagnosis and Treatment in Chronic Lyme Disease

    This study demonstrates that for the majority of chronic Lyme patients with cognitive complaints, there is in fact a measurable and significant decline in intellectual acuity. The nature and severity of the cognitive impairment is such that it interferes with all aspects of normal functioning: employment, home, marriage, social interactions, and general emotional well-being. Rather than the cognitive complaints being secondary to anxiety or depression, as is sometimes suspected, depression and anxiety increase with, and are apparently secondary to, cognitive impairment and the emotional and practical impact of a loss of competence. Thus, while patients with chronic Lyme disease can present a confusing and "psychiatric" picture to the clinician, it is important that their concerns be properly investigated and addressed.

    Patients with Lyme encephalopathy complain of problems with memory and concentration, word retrieval, confusion, problems with thinking, "mental fogginess", a decline in job performance, difficulty with calculations, directions, and judgment. Decreased initiative, manifest as difficulty getting started with or following through with projects is often noted. Mood disturbance is common with complaints of irritability, explosiveness or "a short fuse," sadness, hopelessness or guilt, increased anxiety or mood swings. Sleep disturbance is also common, and can present as initial, middle or terminal insomnia or some combination of these. Fatigue is universal. Headache is common, and of course joint and muscle pain. Increased sensitivity to light and noise, visual disturbance, and tingling in the extremities are also common.

    On interview patients with Lyme encephalopathy tend to be vague and disorganized in the presentation of the history of their illness. This is despite their close attention to their symptoms and having recounted them many times before. Although in most cases memory of discreet events - tests, dates, diagnoses, responses to medications -- is intact, the patient is unable to recall them spontaneously or organize them in temporal order. They may be unclear as to their chief complaint. They may completely lose track of what they were saying, sometimes repeatedly, or of what the question was. They may get off on a tangent and have trouble re-orienting themselves. Frequent prompting and refocusing will be necessary. beginning the interview with an open-ended question like "Tell me what the problem is" will allow these qualities to become clear.

    Often patients with chronic Lyme disease will seem overly focused on their illness, or overly concerned with convincing the clinician that they are ill. The clinician may be tempted to interpret this as evidence of a primary psychiatric disorder. It is important to understand that the frustration many of these patients experience is real, and results from the general attitude of doubt toward Lyme disease as a serious and chronic illness, the invisibility of their symptoms, the difficulty in getting a definitive diagnosis and getting approval for extended treatment from insurance carries. Many have been accused of hypochondriasis or malingering. As with head injury, the patient may "look fin" though they are having difficulty with very basic work, social and day to day functioning.

    The cognitive deficits in chronic Lyme disease involve primarily attention and arousal mechanisms. Patients have difficulty keeping track of external and internal events, retrieval of information from memory and with planning and sequencing, as occurs in attention deficit disorder. However their experience is different from that of ADD, in that rather than having the experience that there are many thoughts competing for attention, the Lyme patient has difficulty bringing any thought into clear focus. They experience difficulty thinking. One patient described it as the universe ending six inches from his face. He can't process information that is not immediately apparent, immediately experienced. Another said that when he tries to think about something, or figure something out, all he can do is repeat the question -- he can't get to the meaning. This is like the idea of "surface" versus "deep" processing in cognitive psychology. Reading a passage for typing errors would be surface processing, while reading for meaning is deep processing. One patient, a physician, described it as a "mental intention tremor" -- the more she tries to focus on something the more out of focus it becomes.

    The clinician should proceed with empathy and reason. Specific cognitive complaints in previously high functioning individuals are unusual and indicative of serious illness, either psychiatric or neurologic. Comprehensive neuropsychological evaluation will most often differentiate the two.

    Where the neuropsychological exam is normal or there is a significant psychiatric component, a psychiatric evaluation is advised. Psychiatric symptomatology is not uncommon in Lyme and the presence of depression, anxiety, obsessive compulsive symptoms, flat affect and so on may cloud the issue of significant cognitive decline. Both the cognitive and psychiatric symptoms would be expected to improve with antibiotic treatment in Lyme encephalopathy. However sometimes concurrent treatment with psychotropic medication is necessary.

    Unfortunately for some patients significant cognitive impairment persists even after years of antibiotic treatment. These patients may never be able to return to their premorbid level of employment, or be gainfully employed at all. Cognitive remediation can help them learn strategies for improving memory and concentration and relieving stress. Support and advice in regard to living with a chronic condition is equally important. Strategies include reducing work hours when possible, taking regular rest periods during the day, limiting the number of outings in a week, and using a calendar to stay organized and structure their time.

    5) Cognitive impairment in Lyme disease: specific functions and the impact or deficits

    1. Attention and mental tracking: includes directed and sustained attention: the ability to direct and maintain one's focus on a particular event or idea, whether in the environment or internally; and divided attention: the ability to simultaneously attend to two events, or dot two or more things at a time, or to retain awareness of one thing while doing another.

    Impact: difficulty functioning effectively in many situations, remembering what one was doing before a distraction, keeping track of conversation, taking notes while someone is speaking, remembering that someone is on hold or what you were about to say.

    2. Memory: Retaining new information.

    Impact: secondary to impaired attention, slowing of processing and the retrieval of stored information, but not storage per se, a tendency to lose or forget things, miss appointments, repeat oneself.

    3. Receptive language: understanding spoken or written language

    Impact: secondary to impaired attention and speed of processing, difficulty participating in meetings or social conversation, difficulty with reading comprehension.

    4. Expressive language: Using spoken or written language to express ideas

    Impact: difficulty finding the right word, using the wrong word and not noticing, not being able to express oneself or communicate

    5. Visuospatial Processing: Efficient scanning of the visual field, making sense of how things are related in space, visuospatial conceptualization and problem solving.

    Impact: a tendency to get lost, difficulty with reading comprehension.

    6. Abstract reasoning: The ability to generalize from the particular, to identify the common factor between related concepts, to compare and contrast two things or ideas, to see the "big picture", to identify the critical factor in a situation, to anticipate consequences and make inferences regarding cause and effect.

    Impact: difficulty with decision making, planning, and problem solving.

    7. Speed of mental and motor processing: the ability to think and respond quickly, critical to understanding speech which occurs at a fairly constant rate.

    Impact: difficulty understanding or keeping up a conversation, functioning in a timely manner in day to day situations, meeting deadlines.

  2. victoria

    victoria New Member

    Describes my son almost to a 'T' who does have chronic and active Lyme... describes a lot of symptoms I have too altho I don't have a formal dx as I don't have the $$ to spend on the testing for me; but he and I overlap on a lot.

    Wonder how seriously the Lyme Times is taken... wonder if something like this could be published in a journal like JAMA where physicians would sit up and take notice?

    Thanks for posting this!
  3. Jen102

    Jen102 New Member

    i used to be so smart. now i am a bumbling idiot. jen102
  4. hopeful4

    hopeful4 New Member

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