Frontotemporal Dementia Misdiagnosed for Post-Treatment Lyme Disease Syndrome or vice versa? A Treviso Dementia (TREDEM) Registry Case Report.
We describe the case of a 61-year-old woman diagnosed with Borreliosis at the age of 57. Subsequently, the patient developed depression, anxiety, and behavioral disturbances. A lumbar puncture excluded the condition of Neuroborreliosis. The diagnostic workup included: an MRI scan, a 18F-FDG PET, a 123I-ioflupane-SPECT, an amyloid-β PET, a specific genetic analysis, and a neuropsychological evaluation.
Based on our investigation, the patient was diagnosed with probable behavioral-frontotemporal dementia (bvFTD), whereas in the previous years, the patient had been considered firstly as a case of Post-Treatment-Lyme Disease and, secondly, a psychiatric patient.
We believe that, in the present case, such initial symptoms of Borrelia infection may have superimposed on those of bvFTD rather than playing as a contributory cause.
Here we have a woman with an actual Lyme diagnosis who goes on to develop depression, anxiety, and behavioral disturbances. (All common symptoms with neuro-Lyme: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/, https://madisonarealymesupportgroup.com/2018/08/25/neuropsychiatric-lyme-borreliosis-an-overview-with-a-focus-on-a-specialty-psychiatrists-clinical-practice/, https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/)
Despite mainstream knowledge of absolute proof of abysmal testing, they state they ruled out infection despite a prior diagnosis based on a lumbar puncture.
In this informative read from Columbia University, we learn that there are specific steps to be followed for lumbar punctures regarding Lyme as well as the fact that patients may have neurologic Lyme Disease but still test negative on the Lyme index (an index used with cerebrospinal fluid in a lumbar puncture) https://www.columbia-lyme.org/diagnosis.
So this woman was handed a label and told, “Go home and be well.”
This scenario has played out so many times it’s like a skip in a record.
How about a clinical trial of antimicrobials known to have action against borrelia and then retest her (called a provocation test)? Clinicians in the field understand how elusive this organism is. A full work-up needs to be done on symptomology as it could possibly be a different pathogen altogether known to be transmitted by ticks and other bugs. How about also testing for other tick borne pathogens known to give behavioral symptoms like Bartonella? https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/ (It could be one of 18 and counting pathogens spread by ticks)
You see, something is causing this “probable behavioral-frontotemporal dementia (bvFTD).”
All they’ve done here is slap a name to it but they haven’t found the cause. Without the cause they will not treat appropriately.
Somebody get this woman to Columbia University!
How many more are going to slip through the cracks and loose their minds due to poor testing?
For more on the abysmal testing: https://madisonarealymesupportgroup.com/2017/08/15/reliability-of-lyme-testing/
More on the relationship between Alzheimer’s, Dementia, ALS and Lyme: https://madisonarealymesupportgroup.com/2016/06/09/alzheimers-byproduct-of-infection/ Kris Kristofferson was wrongly diagnosed with Alzheimer’s but had Lyme Disease. For years doctors told Kristofferson it was either Alzheimer’s or dementia, and may have been the result of blows to his head from boxing, football and rugby. The medication he was given gave him bad side effects and didn’t help. Since starting treatment for Lyme Kristofferson “has made remarkable strides.” His wife Lisa said,
“all of the sudden he was back.” Although he still has some bad days, there are other days when he is “perfectly normal,” she said.
https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/ Bacteria are usually ignored despite its historical and current significance in dementia research. Today, the main bacterial threat to acquiring dementia comes from Lyme disease—a bacterium borrelia burgdorferi.