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Published Jan 2 2009 by Psychology Today in the blog, Emerging Diseases
Neurological Lyme disease (Part Two): They're dismissed as hypochondriacs, but they have an infectious disease
Adults lost homes and jobs. Children lost their childhoods when cognitive or emotional disabilities forced them to be home-schooled, sometimes for years. The impact was major, but mainstream experts continued to characterize their symptoms as "minor," "nonspecific," and "vague."
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copying this here and breaking it up for us neuro patients like me betty
Doctors unable to diagnose the disease stigmatized patients with psychiatric labels
(Neurolyme, Part Two)
By Pamela Weintraub on January 02, 2009 in Emerging Diseases
If one were to describe all the terrifying and macabre presentations of neuroborreliosis, they would fill a book.
But even added together they are rare compared to the most common neurological problem-the confusional state known as encephalopathy, or, as Lyme patients call it, "brain fog."
Patients routinely reported the experience: a disorienting lapse of memory, an inability to concentrate, difficulty in falling asleep, and profound fatigue.
Lyme encephalopathy was hardly controversial.
John Halperin's colleagues at Stony Brook objectively measured deficits in spatial orientation, short-term memory, concentration, and mathematical and construction ability.
Halperin himself used magnetic resonance imaging, MRI, to scan patients'brains.
In one study he found white-matter lesions, much like those seen in multiple sclerosis, in the brains of seven out of seventeen encephalopathic Lyme disease patients.
The lesions represented brain damage.
Following treatment he rescanned six patients, and found the lesions resolved in three. Even when the lesions resolved, symptoms sometimes did not.
As scary as brain lesions might sound, the academic description of these impairments as "mild" created dissonance between scientists like Halperin and patients on the ground.
Sure, Lyme patients were not usually as impaired as those with bullets in their brains, but the brain fog, the deficits in language and organization, the psychiatric leftovers of anxiety, depression, and OCD, could still disrupt lives.
Adults lost houses, marriages, and jobs and were compromised as parents.
Children lost their childhoods when cognitive or emotional disabilities forced them to be home-schooled, sometimes for years.
The impact was major, but mainstream experts continued to characterize such symptoms as "minor," "nonspecific," and "vague."
The professionals able, finally, to traverse the space between the dismissive labels and the excruciating patient experience were the psychiatrists.
If neurologists and rheumatologists deemed psychiatric symptoms "subjective," the psychiatrists said, it was because, when it came to psychiatry, these physicians were unschooled.
One of the first to enter the fray was Brian Fallon, whose interest had been sparked in the late 1980s while helping a close relative overcome a serious case of Lyme disease.
He had just finished his psychiatry residency and secured a gig as a fellow of the National Institute of Mental Health.
He was stationed at the New York State Psychiatric Institute, adjacent to the Columbia University Medical Center complex in New York City.
The young doctor, whose kempt, longish hair, neat beard, and energetic demeanor made him look like he'd marched off the album cover of Abbey Road, specialized in anxiety disorders, with a focus on hypochondria.
But news of his interest in Lyme disease had traveled through the grapevine to Polly Murray. Some of her friends in Old Lyme had developed psychiatric disorders after having Lyme disease. Could Fallon follow up?
Fallon and his psychiatrist wife, Jennifer Nields, drove out to Old Lyme and spent the day in Polly Murray's living room surrounded by her watercolors, talking to her afflicted friends.
One of the first things they decided as a result of that meeting was to impose formal discipline on the loosely knit reports of psychiatric symptoms made by neurologists and rheumatologists.
Fallon was well aware of the single-case studies and series of anecdotes continually published in medical journals.
The German researcher Kohler had even reported a staging of the psychiatric symptoms that paralleled progression in the neurological realm.
In the first stage, mild depression could parallel a fibromyalgia-like illness.
In the second stage, mood and personality disorders often emerged alongside meningitis or neuropathy.
Finally, in stage three, with the onset of encephalomyelitis, the clinical picture might include psychosis or dementia.
Fallon felt that when it came to Lyme, none of these reports, even Kohler's, was solid enough to vest psychiatry with the same objective underpinnings found in rheumatology or neurology.
Part of the problem was a misperception about what psychiatrists did and what psychiatry was.
Psychiatrists often started their work in the murky, subjective outback of a patient's psyche.
But the scientists among them, like Fallon, were charged with the mission of anchoring thought, feeling, and experience in the firmament of objective data.
Neurologists and rheumatologists often dismissed the psychiatric symptoms of Lyme disease as subjective, but they did so without applying the rigorous methodology that psychiatric research entailed.
And that's where Fallon hoped his contribution would matter most. His labor paid off.
Conducting structured clinical interviews with people from southeastern Connecticut who had histories of Lyme disease he learned that depression or panic could worsen after the start of antibiotic treatment, suggesting a kind of psychiatric Herxheimer reaction that resulted as infection died off.
Speaking to the patients, he found that neuropsychiatric Lyme disease and regular psychiatric disease appeared much the same.
This was of particular concern since so many patients failed to notice a rash or register positive on standard tests, making it likely that the true cause of their psychiatric condition-Lyme disease-would be missed.
The patients were in psychiatric trouble, to say the least.
Surveying 193 patients testing positive for Lyme, Fallon found that 84 percent had mood problems; of those reporting depression, 90 percent had never had an episode prior to Lyme disease, which suggested the two were linked.
As for children with Lyme, Fallon showed they resembled accident victims with head injuries.
Like adults, they had trouble with short-term memory, word-finding, and concentration. Their performance IQ and spatial reasoning were particularly impaired.
The children could still remember and learn-but they processed the information slowly and needed more time for tasks.
Though selected for the study because of their cognitive disabilities, the children also suffered anxiety, mood, and behavioral disorders at higher rates than healthy children.
Especially notable was the increased risk for depression and suicidal thoughts.
The findings were important because children with Lyme disease could be "misdiagnosed as having a primary psychiatric problem," while the root issue-infection with the spirochete B. burgdorferi-might never be addressed.
It was a dilemma that transcended Lyme disease. Time and again, Fallon, an expert in hypochondria, had seen frustrated doctors dismiss medically ill patients as psychiatric due to their own inability to diagnose the disease.
In Lyme the mistake was especially damaging, he said, "since a delay in treatment could turn a curable, acute infection into a chronic, treatment-refractory disease."
The solution, Fallon the scientist knew, was to gather objective evidence of physical damage to the brain.
Working with radiologists at Columbia, he found one useful tool was the SPECT (single photon emission computed tomography) scan, which generated a moving picture of the brain.
A radioactive "tracer" solution was delivered intravenously, and was thereafter tracked to measure blood flow through the brain.
Even when MRI scans appeared normal in Lyme disease patients, SPECT could show something amiss.
In symptomatic Lyme patients, decreased blood flow, known as hypoperfusion, could often be documented in the center of thought and higher functioning, the cerebral cortex.
After treatment, many of the patients showed improvement on SPECT.
More on Neurological Lyme disease to come *******************************************
(Follow this link to read my personal story.)
Excerpted from Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008
Pam, Thanks again for another insightful article on our chronic lyme disease.
I'm so glad you addressed, "encephalopathy, or, as Lyme patients call it, "brain fog."
Patients routinely reported the experience: a disorienting lapse of memory, an inability to concentrate, difficulty in falling asleep, and profound fatigue.
We are so tired of people with NO chronic lyme knowledge claiming that, "it's ALL in your head"! What a demeaning statement to make about your loved ones or friends.
The 08 lyme documentary, UNDER OUR SKIN, by Andy A. Wilson, did a great job and showed some good examples of this in our daily lives.
Your quotes here were right on the money as well,
"Adults lost houses, marriages, and jobs and were compromised as parents.
Children lost their childhoods when cognitive or emotional disabilities forced them to be home-schooled, sometimes for years."
In addition, by losing their jobs, they lose their HEALTH insurance, and most insurance companies REFUSE to pay anything towards our lyme dr. appointsments, treatments, and meds in many cases!
I know in 2005, I had $5,000 out of pocket for my out-of-state lyme literate md, LLMD, appts., body lab testings, and meds plus $1,000 TRAVEL expenses.
Lyme is a terribly EXPENSIVE disease to have, and it's hard to find LLMD doctors without traveling/flying across country.
"The German researcher Kohler had even reported a staging of the psychiatric symptoms that paralleled progression in the neurological realm.
In the first stage, mild depression could parallel a fibromyalgia-like illness.
In the second stage, mood and personality disorders often emerged alongside meningitis or neuropathy.
Finally, in stage three, with the onset of encephalomyelitis, the clinical picture might include psychosis or dementia."
Again, Pam gave wonderful, educational info here for the public to learn what we chronic lyme and/or co-infection patients go thru daily. WE STRUGGLE to exist many days.
Pam, keep up the good work writing these to educate the public, IDSA/Infectious Disease Society of America, CDC/Center of Disease Control, our health insurance companies, congress, family, friends, and lyme and co-infection patients.
I look forward to your weekly columns! Thanks again! xox
Vermont_Lymie
Frequent Contributor (1K+ posts)
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Pam
Thanks so much for your important work. Your book explained so much to me! I am so glad that you are reaching this audience.
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bettyg
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up for reading and sending FEEDBACK COMMENTS to online site !! thanks everyone
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kam
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Oncea gain I tried to sign in for an email reminder and got an error message.
My brain is not working well enough to read the text.
Thanks for spacing it and hoping to be able to read it when I have that window of opportunity.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
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pam, would you let me know when this is put on YOUR BLOG, and then i'll copy my broken up version to your blog and leave it in REPLIES, and link it back here, and delete my broken up version there!
big thanks! i did copy part 1 there in replies; behind in other work; i'll look if kam or i broke up your other work there, and post it as replies!
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