"Monster's Inside Me", an Animal Planet Channel production, recently aired a synopsis of one lyme disease and babesiosis based on a young girl's case in Maryland. The complete segment is a approachable introduction to the complexity and invisibility of symptoms, diagnosis and treatment of lyme disease.
The episode is Monster's Inside Me - Episode 27 - "Killer in My Neck" (2012). And will air again on Fri 14 Dec & Sat 15 Dec.
Several things I found of note:
DEET bug repellants recommended by the episode, DEET are usless for tick prevention. DEET neither repels or kills ticks. See Prevention... for specifics.
She told the typical lyme story of having doctor's say she was attention seeking not sick.
Physician's Please Note: If you have a pt with mild anemia fitting the malaise and whiney "attention seeking" behaviors... SLOW DOWN!!!!! ...think babesiosis w/ lyme. Because there are NO words English to describe lyme pains, perceptual changes and lyme cognitive issues... lyme sufferers use every day words, resulting in pt communications which almost always sound trivial. This pattern has shown in every of the 30 or so chronic cases I know of personally. (For reference, I also know one person who was completely asymptomic - didn't know she had lyme until the test was done.) See Diagnosis... for ideas on extracting info from lyme cognitively impaired pts.
Antibiotics and antiparasitics were responsible for returning her to healthy function. Antibiotics alone wasn't enough.
The girl was given a short course of antibiotics at the age of 6.
babesiosis - Columbia University - http://www.columbia-lyme.org/patients/tbd_babesia.html
Monster's Inside Me - Episode 27 - "Killer in My Neck" (2012).
Monster's Inside Me Schedule - http://animal.discovery.com/tv-shows/monsters-inside-me/tv-schedule.htm
Monday, December 10, 2012
Tuesday, October 30, 2012
What does lyme Cognitive Dysfunction look like?
When physicians ask patients questions, they listen to the answers and beyond. Speech cadence, recognition of concepts, congruent answers and many other every day, non-verbal motor movements and responses subtly reveal a wealth of detailed data on health condition.
Of all the diagnostic tools available to physicians, only asking questions allows the physician to mine an amazingly rich repertoire of irrational sensations and intuitions designed into humans over countless years of evolution, to help humans survive and care for their health when seeking rational experts wasn't an option.
When lyme has reached the brain, this rich 'human data' becomes saboteur, often misleading patient and physician into finding no illness. Questioning the ill mind is always difficult. As with other illnesses of the mind, the suffer can be giving information which makes sense, but isn't correct. For a physician this is terrifying, their most sensitive specific instrument is faulty and its unclear when it can be trusted.
Cognitive symptoms can be the stuff of nightmares - unable to speak or while being attacked, things appear out of no where, time is lost, the familiar becomes strange and threatening. Understanding how attention, mental tracking, memory, language, reasoning and neurological processing errors can manifest in a normal physician interview may help better identify cognitive defects of lyme.
Affected areas hard to test in a basic physician interview, here are some thoughts:
Attention and Mental Tracking - sustained attention is the key here, look for follow through here over several minutes, over several though/concept transitions. Comprehension of cause and effect can be fragmented. A patient's thoughts may vanish as soon as they become aware they are thinking them.
TEST: Give a series of 5 - 7 things in a cause and effect relationship, then ask a question about one of the relationships - which caused what.
Memory - retaining new information may become difficult after a distinct date/event in the patient's history and/or new concepts, stories or items may be difficult to recall and even recognize. Memory can be a fleeting capability and capabilities vary based on the subject matter. For example some old professional information and new relating information may be normal while, new skills unrelated to the old information may find no anchor point in memory and be unusually difficult to retain.
TEST: Give a short story and ask a detail about a fact in the story.
Receptive Language - understanding spoken or written language processing can be slow or broken, word finding difficult or error prone. Reading multi-line single space, 1.5 space or sometimes even double space may be difficult because attention jumps all over the page and can't track. Listening to speech and taking in the non-verbal communication at the same time may be too much for the brain to process at once.
I once had my brain seize when some one I was talking to whipped around quickly and enthusiastically agreed with me. I lost so much processing power - I nearly lost my balance and fell to the ground. I had barely a concept of the thing I was leaning on for support (a table). I couldn't remember my purpose or the name of the person I was talking to (which was very very important to me). It took me several awkward minutes to recover my ability to speak and when I did I couldn't remember important questions I had brought to the conversation for at least a half hour.
TEST: Have the pt read a paragraph and respond with what they comprehended.
TEST: Tell a story. Ask the patient for their most detailed comprehension.
TEST: Does comprehension diminish if eye contact is demanded?
Expressive Language - difficulty using language spoken or written language. Speech difficulties may include odd pauses, word finding difficulties (including using a word which is opposite or sounds like the intended word), not remembering what they are saying to the degree of being unsure they are making any sense, typing errors such as using "c" for "k" or other subtle language mistakes not usually made. Awareness of this symptom varies from being completely unaware to frustration over "not being able to communicate". Encouraging pts take more time to express themselves might help over ride a "need to rush" symptom also associated with lyme. For some lyme suffers, cognitive dysfunctions manifest in a complex similar to being "locked in" - able to walk and talk, but not communicate what they intend.
I, and others with lyme, have experienced unexpected question as akin to being asked "Tell me everything you know.". Clearly its an impossible task. Responses tend to make sense but have more to do with "the closest thing my brain could 'see' " rather than any consistency with intention or belief. The experience feels somewhat like throwing a beach ball on a fire to put out a fire, in a confusion: the beach ball was the first identifiable item; there was an urgent need for response. It was impossible to see what was "beyond" the beach ball,
and the beach ball was applied. Similarly, this response may seem unreasonable, but within normal perameters.
Yes and No Questions -
Lyme can leave much uncommunicated. Words "on the tip of the tounge" is a phenomena with which we are all familiar. Lyme can produce a similar effect with whole concepts and linear thinking. Whole dialogs can be thought but spoken. This is part of the "locked in" experience. Somehow, starting the subject off helps break this "spell" a bit and help the pt get their thoughts to expression. This does requires a higher level of work, attention, persistence, compassion and intuition from the physician and there is a risk of an undesired leading of the patient. Focus should be on only "starting" the patient off, but offering suggestions as long as "something seems off" with the patient's demeanor.
TEST: Name as many words as you can describing one object such as "cat".
TEST: Without offering your own understanding ask "Is this what you intended to tell me?" If a patient responds to this question with "What (are you referring to)?" Avoid offering your own understanding and ask if they remember what they just said.
Visuospatial Processing - making accurate conceptualization of visual space and relations of objects in space
TEST: Watch pt go up and down a flight of stairs. Ask them to turn around 1/2 if its not too dangerous.
Abstract Reasoning - difficulty with decision making, problem solving and planning
TEST: Fibonacci sequence exercises can reveal working memory problems quite sharply in people of all intelligence levels, because it requires numbers to stay in memory to execute the task.
Mental and Motor Processing Speed - difficult keeping up with conversation, moving through space and keeping an accurate idea of time. Deadlines may start being missed.
TEST: Ask what time is it and use a clock with hands and a then a digital clock.
TEST: Ask if there is an every day task which has become difficult. Ask them to mimic the movements of this task and ask if there is premature fatigue or pain while doing the task.
TEST: Ask pt to tap a finger continuously for 30 seconds to a minute. The dominant hand should sound faster.
- reference: Rissenberg, Marian & Chambers, Susan. "Cognitive Impairment in Lyme Disease: Specific functions an the impact of deficits", presentation at the American Psychiatric Association, May 1996
If something feels off, it is...
Whether its the physician, patient or significant other noticing something off, consider lyme if the unusual falls into categories of:
balance problems (I'm bumping into things a lot...)
timing problems (I can't throw a ball, tool, etc like I used to...)
problem solving difficulty (It takes me forever to....)
long lapses between words (the patient might even look frustrated...)
brain blitzes (Concepts of the every day are lost - "what is a table")
Other Questions which can start to reveal the hidden:
Who does the bills? How long does it take?
Add 5 three digit numbers together.
Do you have difficulty dialing a phone? - watch while the person executes the task.
Do you have difficulty driving? Do you have difficulty know if it is safe to drive into an intersection?
Who does the cooking? Is there a change in who does the cooking or the ability to cook?
Ruling out lyme..
Lyme is a CLINICAL diagnosis according to the CDC. No test western blot, ELISA or more sophisticated tests rules out lyme alone. Unfortunately, finding lyme is ultimately based on judgement... if you don't trust your's, call in an expert.
Of all the diagnostic tools available to physicians, only asking questions allows the physician to mine an amazingly rich repertoire of irrational sensations and intuitions designed into humans over countless years of evolution, to help humans survive and care for their health when seeking rational experts wasn't an option.
When lyme has reached the brain, this rich 'human data' becomes saboteur, often misleading patient and physician into finding no illness. Questioning the ill mind is always difficult. As with other illnesses of the mind, the suffer can be giving information which makes sense, but isn't correct. For a physician this is terrifying, their most sensitive specific instrument is faulty and its unclear when it can be trusted.
Cognitive symptoms can be the stuff of nightmares - unable to speak or while being attacked, things appear out of no where, time is lost, the familiar becomes strange and threatening. Understanding how attention, mental tracking, memory, language, reasoning and neurological processing errors can manifest in a normal physician interview may help better identify cognitive defects of lyme.
Affected areas hard to test in a basic physician interview, here are some thoughts:
Attention and Mental Tracking - sustained attention is the key here, look for follow through here over several minutes, over several though/concept transitions. Comprehension of cause and effect can be fragmented. A patient's thoughts may vanish as soon as they become aware they are thinking them.
TEST: Give a series of 5 - 7 things in a cause and effect relationship, then ask a question about one of the relationships - which caused what.
Memory - retaining new information may become difficult after a distinct date/event in the patient's history and/or new concepts, stories or items may be difficult to recall and even recognize. Memory can be a fleeting capability and capabilities vary based on the subject matter. For example some old professional information and new relating information may be normal while, new skills unrelated to the old information may find no anchor point in memory and be unusually difficult to retain.
TEST: Give a short story and ask a detail about a fact in the story.
Receptive Language - understanding spoken or written language processing can be slow or broken, word finding difficult or error prone. Reading multi-line single space, 1.5 space or sometimes even double space may be difficult because attention jumps all over the page and can't track. Listening to speech and taking in the non-verbal communication at the same time may be too much for the brain to process at once.
I once had my brain seize when some one I was talking to whipped around quickly and enthusiastically agreed with me. I lost so much processing power - I nearly lost my balance and fell to the ground. I had barely a concept of the thing I was leaning on for support (a table). I couldn't remember my purpose or the name of the person I was talking to (which was very very important to me). It took me several awkward minutes to recover my ability to speak and when I did I couldn't remember important questions I had brought to the conversation for at least a half hour.
TEST: Have the pt read a paragraph and respond with what they comprehended.
TEST: Tell a story. Ask the patient for their most detailed comprehension.
TEST: Does comprehension diminish if eye contact is demanded?
Expressive Language - difficulty using language spoken or written language. Speech difficulties may include odd pauses, word finding difficulties (including using a word which is opposite or sounds like the intended word), not remembering what they are saying to the degree of being unsure they are making any sense, typing errors such as using "c" for "k" or other subtle language mistakes not usually made. Awareness of this symptom varies from being completely unaware to frustration over "not being able to communicate". Encouraging pts take more time to express themselves might help over ride a "need to rush" symptom also associated with lyme. For some lyme suffers, cognitive dysfunctions manifest in a complex similar to being "locked in" - able to walk and talk, but not communicate what they intend.
I, and others with lyme, have experienced unexpected question as akin to being asked "Tell me everything you know.". Clearly its an impossible task. Responses tend to make sense but have more to do with "the closest thing my brain could 'see' " rather than any consistency with intention or belief. The experience feels somewhat like throwing a beach ball on a fire to put out a fire, in a confusion: the beach ball was the first identifiable item; there was an urgent need for response. It was impossible to see what was "beyond" the beach ball,
and the beach ball was applied. Similarly, this response may seem unreasonable, but within normal perameters.
Yes and No Questions -
Lyme can leave much uncommunicated. Words "on the tip of the tounge" is a phenomena with which we are all familiar. Lyme can produce a similar effect with whole concepts and linear thinking. Whole dialogs can be thought but spoken. This is part of the "locked in" experience. Somehow, starting the subject off helps break this "spell" a bit and help the pt get their thoughts to expression. This does requires a higher level of work, attention, persistence, compassion and intuition from the physician and there is a risk of an undesired leading of the patient. Focus should be on only "starting" the patient off, but offering suggestions as long as "something seems off" with the patient's demeanor.
TEST: Name as many words as you can describing one object such as "cat".
TEST: Without offering your own understanding ask "Is this what you intended to tell me?" If a patient responds to this question with "What (are you referring to)?" Avoid offering your own understanding and ask if they remember what they just said.
Visuospatial Processing - making accurate conceptualization of visual space and relations of objects in space
TEST: Watch pt go up and down a flight of stairs. Ask them to turn around 1/2 if its not too dangerous.
Abstract Reasoning - difficulty with decision making, problem solving and planning
TEST: Fibonacci sequence exercises can reveal working memory problems quite sharply in people of all intelligence levels, because it requires numbers to stay in memory to execute the task.
Mental and Motor Processing Speed - difficult keeping up with conversation, moving through space and keeping an accurate idea of time. Deadlines may start being missed.
TEST: Ask what time is it and use a clock with hands and a then a digital clock.
TEST: Ask if there is an every day task which has become difficult. Ask them to mimic the movements of this task and ask if there is premature fatigue or pain while doing the task.
TEST: Ask pt to tap a finger continuously for 30 seconds to a minute. The dominant hand should sound faster.
- reference: Rissenberg, Marian & Chambers, Susan. "Cognitive Impairment in Lyme Disease: Specific functions an the impact of deficits", presentation at the American Psychiatric Association, May 1996
If something feels off, it is...
Whether its the physician, patient or significant other noticing something off, consider lyme if the unusual falls into categories of:
balance problems (I'm bumping into things a lot...)
timing problems (I can't throw a ball, tool, etc like I used to...)
problem solving difficulty (It takes me forever to....)
long lapses between words (the patient might even look frustrated...)
brain blitzes (Concepts of the every day are lost - "what is a table")
Other Questions which can start to reveal the hidden:
Who does the bills? How long does it take?
Add 5 three digit numbers together.
Do you have difficulty dialing a phone? - watch while the person executes the task.
Do you have difficulty driving? Do you have difficulty know if it is safe to drive into an intersection?
Who does the cooking? Is there a change in who does the cooking or the ability to cook?
Ruling out lyme..
Lyme is a CLINICAL diagnosis according to the CDC. No test western blot, ELISA or more sophisticated tests rules out lyme alone. Unfortunately, finding lyme is ultimately based on judgement... if you don't trust your's, call in an expert.
Saturday, October 20, 2012
What might symptoms look like?
Experiencing lyme symptoms can be maddening and erode self confidence beyond what was thought possible. Symptoms which come and go, affecting systems all over the body in a seemingly patternless way and when described sound like every day "oops". Such characteristics often leave physician and patient at odds or at least confused.
Lyme symptoms, while subtle and sound like every day "oops" events are debilitating to the core and often interfere with the simplest tasks. Unfortunately, the lyme patient often can not communicate the level of impairment to a physician, especially in the face of "...well that's not abnormal, that happens to everyone occassionally". Lyme hides in plain sight and uses many different disguises. When looking for the tell tale signs of lyme, there are patterns: look for what shouldn't be there.
Here are three symptoms I've seen show up in multiple people with chronic lyme. Most of these symptoms aren't a unique symptom of lyme, however when you get these all together in one patient (no these won't all occur at the same time), lyme had better be on the diagnostic "chopping block".
Dropping Things:
Everyone drops things. Its a normal, healthy, every day occurrence which often happens when ones try to do too much at once. This is no different with those with lyme, they drop things because they were doing too much. With lyme, what you'll see is some one holding something perfectly fine for a while, but drop it when they go to do another task, pick up another thing, or change the topic they are thinking about. Healthy people wouldn't drop things under these circumstances, however in the lyme the brain's working memory has become so small, holding 2 things in the hands and talking can be "too much". I have had my working memory get so small I struggled to dial a phone number with the number on a piece of paper next to the key to be dialed. The number to be dialed wouldn't stay in memory long enough for me to dial.
The "working memory" is the mind's work bench, this is where we pull together the pieces in our brain and make something useful of it: talking, solving problems, helping a friend. Without working memory, the world is just a bunch of stimuli and memories which mean almost nothing.
Getting Lost:
Everyone gets lost occasionally or disoriented. Most people while traveling have experienced of waking and not knowing where you are. This next symptom is almost exactly the same experience except it happens all of the sudden, during waking hours usually while doing something habitual or very familiar such as driving somewhere very very familiar. What's unique is this happens when it shouldn't. Getting lost on a routinely traveled route to work shouldn't happen to the degree of making some one turn around 3 times. Episodes of this occurring can be predictable and constant or come and go. Sufferers may start to compensating with an extra 1/2 hour or hour get somewhere on time.
Walking into Walls:
Everyone has made a misstep and put their foot where they didn't mean to, or stood up under a cabinet they forgot was there. However the lyme experience is different and because of the decreasing working memory space mentioned above, is seen more often when doing multiple things at once or an every day task, which is repeated without thought, but is now "too much". With lyme seems to be a pattern of being undsteady on one side. This may feel like "pulling to the left" or repeatedly banging a hip while walking around a cabinet.
When a basic neurological exam is done it probably won't reveal a problem unless the test time on the balance tasks is extended. Maybe this is because the balance "error" lyme suffers experience "multiplies itself" as time goes on. In other words, as the seconds tick by, balance and "the understanding of balanced" gets increasingly worse. Its as if a repeating calculation is just a little "off" but the error isn't pronounced until the calculation is "run" many times.
If extra time on the balance tasks are given, one should see an increasing slow response to correct imbalance, the patient fails to compensate in a timely manner. Slow reactions to an unbalanced state, looks different than not having great balance. Doubling the basic balance test times should be enough to highlight this error, (any more than tripling shouldn't be required).
Recognizing Neurological and Cognitive Lyme Symptoms:
Lyme symptoms might appear most similar to traumatic brain injury symptoms common with athletes. Such subtle symptoms may allow lyme sufferes to pass the basic physician neurological exam but not pass the Postural Stability Assessments and Balance Evaluation Scoring System or more sophisticated cognitive and neurological tests now being used to assess athlete's fitness to return to athletic after a potential concussion impairment. These more sensitive tools may play an increasing a large role in diagnosing the difficult to diagnose lyme patient.
The key is looking for what shouldn't be there. Look for "oops" which shouldn't be there, like getting completely disoriented while driving to work. Finding "too much" unexpected or unusual should point to thinking about lyme.
Robert Bransfield, MD, Lyme Disease and Cognitive Impairments http://www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm
New York University School of Medicine - Coordination, Gait and Rhomberg Test http://informatics.med.nyu.edu/modules/pub/neurosurgery/coordination.html
Ohio State - Wexler Center, Neurological Exam http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/about/exams/Pages/index.aspx
Boston University - Recovery from TBI (Traumatic Brain Injury) http://emt.bu.edu/em610/em610_ol_spring_2008/mtoda125/recovery.html
ImPACT http://www.impacttest.com/
Lyme symptoms, while subtle and sound like every day "oops" events are debilitating to the core and often interfere with the simplest tasks. Unfortunately, the lyme patient often can not communicate the level of impairment to a physician, especially in the face of "...well that's not abnormal, that happens to everyone occassionally". Lyme hides in plain sight and uses many different disguises. When looking for the tell tale signs of lyme, there are patterns: look for what shouldn't be there.
Here are three symptoms I've seen show up in multiple people with chronic lyme. Most of these symptoms aren't a unique symptom of lyme, however when you get these all together in one patient (no these won't all occur at the same time), lyme had better be on the diagnostic "chopping block".
Dropping Things:
Everyone drops things. Its a normal, healthy, every day occurrence which often happens when ones try to do too much at once. This is no different with those with lyme, they drop things because they were doing too much. With lyme, what you'll see is some one holding something perfectly fine for a while, but drop it when they go to do another task, pick up another thing, or change the topic they are thinking about. Healthy people wouldn't drop things under these circumstances, however in the lyme the brain's working memory has become so small, holding 2 things in the hands and talking can be "too much". I have had my working memory get so small I struggled to dial a phone number with the number on a piece of paper next to the key to be dialed. The number to be dialed wouldn't stay in memory long enough for me to dial.
The "working memory" is the mind's work bench, this is where we pull together the pieces in our brain and make something useful of it: talking, solving problems, helping a friend. Without working memory, the world is just a bunch of stimuli and memories which mean almost nothing.
Getting Lost:
Everyone gets lost occasionally or disoriented. Most people while traveling have experienced of waking and not knowing where you are. This next symptom is almost exactly the same experience except it happens all of the sudden, during waking hours usually while doing something habitual or very familiar such as driving somewhere very very familiar. What's unique is this happens when it shouldn't. Getting lost on a routinely traveled route to work shouldn't happen to the degree of making some one turn around 3 times. Episodes of this occurring can be predictable and constant or come and go. Sufferers may start to compensating with an extra 1/2 hour or hour get somewhere on time.
Walking into Walls:
Everyone has made a misstep and put their foot where they didn't mean to, or stood up under a cabinet they forgot was there. However the lyme experience is different and because of the decreasing working memory space mentioned above, is seen more often when doing multiple things at once or an every day task, which is repeated without thought, but is now "too much". With lyme seems to be a pattern of being undsteady on one side. This may feel like "pulling to the left" or repeatedly banging a hip while walking around a cabinet.
When a basic neurological exam is done it probably won't reveal a problem unless the test time on the balance tasks is extended. Maybe this is because the balance "error" lyme suffers experience "multiplies itself" as time goes on. In other words, as the seconds tick by, balance and "the understanding of balanced" gets increasingly worse. Its as if a repeating calculation is just a little "off" but the error isn't pronounced until the calculation is "run" many times.
If extra time on the balance tasks are given, one should see an increasing slow response to correct imbalance, the patient fails to compensate in a timely manner. Slow reactions to an unbalanced state, looks different than not having great balance. Doubling the basic balance test times should be enough to highlight this error, (any more than tripling shouldn't be required).
Recognizing Neurological and Cognitive Lyme Symptoms:
Lyme symptoms might appear most similar to traumatic brain injury symptoms common with athletes. Such subtle symptoms may allow lyme sufferes to pass the basic physician neurological exam but not pass the Postural Stability Assessments and Balance Evaluation Scoring System or more sophisticated cognitive and neurological tests now being used to assess athlete's fitness to return to athletic after a potential concussion impairment. These more sensitive tools may play an increasing a large role in diagnosing the difficult to diagnose lyme patient.
The key is looking for what shouldn't be there. Look for "oops" which shouldn't be there, like getting completely disoriented while driving to work. Finding "too much" unexpected or unusual should point to thinking about lyme.
Robert Bransfield, MD, Lyme Disease and Cognitive Impairments http://www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm
New York University School of Medicine - Coordination, Gait and Rhomberg Test http://informatics.med.nyu.edu/modules/pub/neurosurgery/coordination.html
Ohio State - Wexler Center, Neurological Exam http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/about/exams/Pages/index.aspx
Boston University - Recovery from TBI (Traumatic Brain Injury) http://emt.bu.edu/em610/em610_ol_spring_2008/mtoda125/recovery.html
ImPACT http://www.impacttest.com/
Wednesday, October 10, 2012
ILADS
What You Should Know About Lyme Disease http://www.ilads.org/lyme_research/lyme_articles6.html
Basic Information About Lyme http://www.ilads.org/lyme_disease/about_lyme.html
Diane Rhem
Columbia University
Current and Recent Research http://www.columbia-lyme.org/research/cr_research.html
A Message from the Director - Dr. Brian Fallon http://www.columbia-lyme.org/about/director_message.html
CDC - Centers for Disease Control
Symptoms http://www.cdc.gov/lyme/signs_symptoms/
What You Should Know About Lyme Disease http://www.ilads.org/lyme_research/lyme_articles6.html
Basic Information About Lyme http://www.ilads.org/lyme_disease/about_lyme.html
Diane Rhem
Diagnosing and Treating Lyme Disease - Wednesday, February 29, 2012
Columbia University
Current and Recent Research http://www.columbia-lyme.org/research/cr_research.html
A Message from the Director - Dr. Brian Fallon http://www.columbia-lyme.org/about/director_message.html
CDC - Centers for Disease Control
Symptoms http://www.cdc.gov/lyme/signs_symptoms/
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