The Whitworths of Arizona, bringing science to you in everyday language.

Friday, April 19, 2013

Research News about LBD

There have been several recent research projects of interest to anyone dealing with a Lewy body disorder. Perhaps the most exciting is the news about a safer drug for acting-out behaviors. But the others are hopeful too. The APOE gene study and the intestinal studies might help us to identify Lewy body disorders earlier, so that treatment might begin even before symptoms appear. Who knows where brain mapping can take us; it may even help to find a cure! And in the meantime, the STAND test makes an accurate LBD diagnosis easier for even primary physicians. Sadly, none of these projects are available to the general public. But watch for news. Any of them could be within the next year!

Pimavanserin, a new drug. Up to now, most drugs used to manage the hallucinations, and general acting-out of LBD have been too dangerous to use safely with our loved ones. Even those that may seem to work well for many PwLBD, such as Seroquel, come with a serious warning.  Pimavanserin treats Parkinson’s disease with psychosis, i.e., the above psychotic symptoms. This oral, once-a-day drug demonstrated significant antipsychotic efficacy with few side effects. It also improved night-time sleep and daytime wakefulness.  Clinical trials are done and researchers are waiting for FDA approval. While this research was done with PD patients, the drug should work equally well with DLB, that form of Lewy body dementia which starts prior to motor difficulties.

APOE gene may also predict LBD: A clinical study done by the University of Washington (2012) found that the presence of the APOE gene, until now most closely associated with Alzheimer’s, can also predict pure LBD. Its presence predicts that there is 10 times the risk for AD compared to 13 times the risk for AD plus DLB (10 to 13). Its connection is stronger with pure DLB than with PDD (6 to 3), and there were no statistics for AD plus PD or AD plus PDD, supporting other evidence that fewer people with PDD have coexisting Alzheimers than those with DLB. The good news about this study is that therapies and especially research aimed at AD may also help LBD, since the two disorders may share more of the same root causes than previously thought.

Intestinal Studies: Researchers have found alpha-synuclein, the precursor to Lewy bodies, in the nerves of gut tissue of people who up to 5 years later, developed PD, but none, or very little in people who were healthy or had other gut disorders. This could mean that PD and other Lewy body disorders could be predicted years prior to the appearance symptoms due to Lewy bodies in the brain. Building on this research, other researchers are exploring the idea that a toxin leaks out of the intestine, carrying with it some damaged alpha-synuclein which eventually travels to the brain and becomes Lewy bodies. If this is true, researchers may be much closer to finding a way to stop Lewy body disorders before they start.

Brain Mapping: President Obama is advocating that we spend $100 million dollars on a brain mapping project and inviting other organizations and companies to invest as well. At present, we can study large populations of brain cells. Brain mapping will be a study of the brain, right down to the individual cell and cell connections. Just as gene mapping has greatly helped medical science, brain mapping will provide information that will generate treatment ideas for numerous neurological disorders, including LBD.

STructural Abnormality iNDex test (STAND) test: Briefly, this is a MRI scan that allows a physician with little LBD experience to make as accurate a diagnosis as a LBD specialist.  As yet, the STAND test is only accessible in large teaching and research centers. However, doesn’t the idea that eventually, a primary physician could order this scan and then do a good job of diagnosing LB disorders sound wonderful?



  1. Hello Whitworths! I've been recommending your book to all the people I talk to. Just wanted to let you know about a new LBD book I just finished that you might want to add, Living with Lewy's by Amy and Gerald Throop. I thought it was pretty good, packed with basic information. Hope you're well. Joy Walker

  2. Thanks Joy. Yes, we agree. Throop's book is very good. It's only drawback is that it is published privately and and not available on Amazon or anywhere except through Cando Publishing.