The Johns Hopkins team cautioned that their study was small, and whether or not the results apply to all people with post-treatment Lyme disease syndrome-such as those with chronic pain but not cognitive symptoms-must await far larger and broader studies. "We thought there might be certain brain regions that would be more vulnerable to inflammation and would be selectively affected, but it really looks like widespread inflammation all across the brain," says Coughlin. On average, when all brain regions were combined and the data was adjusted for genotype, brain region, age and BMI, there was a mean difference of 0.58 between the TSPO levels of controls and patients with PTLDS. The scans revealed that across eight different regions of the brain, PTLDS patients had significantly higher levels of TSPO compared with controls. All had reported the presence of fatigue and at least one cognitive deficit such as problems with memory or concentration.Ĭontrols and cases were all adult men (18) and women (13) over age 18 and did not differ significantly in age or body mass index (BMI).
The PTLDS patients all had a history of confirmed or probable Lyme disease infection, documented evidence of treatment and no history of diagnosed depression. In the new study, Coughlin's group teamed up with Johns Hopkins Lyme disease researchers and compared PET scans of 12 patients with a diagnosis of PTLDS and 19 without.
They've used it previously to see inflammation in the brains of former NFL players as well as to study brain inflammation in autoimmune diseases such as lupus. With this type of PET scan, Coughlin's team says it can visualize levels of TSPO-and therefore levels of inflammation, or astrocyte and microglia activation-throughout the brain. In the brain, TSPO is released primarily by two types of brain immune cells-microglia and astrocytes-so levels of TSPO are higher when brain inflammation is present. Over the last decade, Coughlin and her colleagues optimized a positron emission tomography (PET) imaging technique in which specially labeled molecules-or radiotracers-bind to a protein called translocator protein (TSPO).
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Little is known about what causes PTLDS or how to treat it, and while studies have shown that people with PTLDS have elevated markers of inflammation-such as the chemokine CCL19-in their bloodstreams, it has not been clear where that inflammation may be occurring. Doctors diagnose PTLDS if treated patients report fatigue and brain fog for at least six months after treatment. are diagnosed with Lyme disease each year, and their infections can be successfully treated with antibiotics. Lyme disease is a bacterial infection transmitted to humans through tick bites. "There's been literature suggesting that patients with PTLDS have some chronic inflammation somewhere, but until now we weren't able to safely probe the brain itself to verify it," says Jennifer Coughlin, M.D., associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, and one of the first authors of the study report. Thank you.Results of the study, published in Journal of Neuroinflammation, suggest new avenues for treating the long-term fatigue, pain, sleep disruption and "brain fog" associated with PTLDS, the researchers say. If you have any advice on providers/treatment centers that could address a complex set of neurological symptoms probably stemming from multiple diagnoses I would be grateful. Oncologists, neurologists and my PCP don’t seem to know what to do with me other than to say that I’m an outlier with a lot of neurological issues from different diseases and they’ve never worked with someone like me before. I’m not sure if it’s Lyme-related or chemo-induced.Īfter Lyme treatment and a recent partial colectomy and until chemo began last month, I felt I was in good health- still able to run, ski, play tennis, etc and on no meds post surgery except a daily vitamin and a calcium supplement. Now with Stage III colon cancer in my early 50’s, I tried Capox but have severe sensory and motor neurological side effects and brain fog after the first cycle. Does anyone have experience with having neurological Lyme disease first then getting CRC? I had many neuro symptoms from undiagnosed Lyme and Epstein Barr for 5 years that finally improved as my immune system got stronger after several months of antibiotics in my 30’s.
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