Q: I was in a life-threatening car accident 15 years ago that resulted in multiple pelvic fractures, a burst bladder, several other fractures and a mild TBI (traumatic brain injury). There have been a number of other physical and emotional traumas throughout my life and I have received MANY treatments, including years of physical therapy, psychotherapy, medications, osteopathic treatments, acupuncture, herbs, homeopathy, prolotherapy, and others. Recently, my osteopathic doctor (who is also an acupuncturist) suggested that I read Total Recovery. I found this book extremely helpful, mostly as it helped me feel not quite so isolated.
My doctor is proceeding through many of the protocols you suggested that we have not already tried. He recently found that my C4a result was 5 times the normal high limit. We are continuing further testing based on this result, but I wondered what next steps you would suggest. I have a diagnosed gluten intolerance, IBS, fibromyalgia, tested negative for Lyme disease, and positive for Epstein Barr (not currently active). I take magnesium (glycinate and threonate), calcium, fish oil, pantothenic acid, prebiotics, probiotics, etc. I also take Cymbalta. I believe most of the other tests you recommend I have had, and there does not appear to be an issue. Thank you for your time and attention, keep up the great work!
Gary Kaplan, D.O.: This is a very difficult and challenging case and fortunately it sounds like you have had some excellent care. It takes a great deal of courage to persevere in circumstances such as yours. The approach to dealing with a case like this is to first identify all of the issues that are fueling the fire in your brain. Once those are identified you can then work towards putting that fire out.
What I mean by this is that you have to address all the factors that are continuing to cause damage to the neurons in the brain, such as infections, mycotoxins, hypoxia secondary to sleep apnea, etc. These factors stimulate cells called microglia. Microglia are immune cells in the brain and central nervous system that respond to stressors by producing inflammatory chemicals designed to help with healing. Once the stress is resolved, the microglia should return to a resting state until the next time they are needed. If too many stressors occur, the microglia can remain in an up-regulated state, producing unwanted inflammation that can be the cause of your symptoms. So, addressing any infection, injury or other physical stressors should allow the microglia to down-regulate. The microglia up-regulation can also be addressed with meditation, exercise, low dose naltrexone, turmeric, and other supplements.
At this time in your treatment process, I would step back and reassess. I would begin with the gut and make sure that any issue with leaky gut is resolved and that there is no evidence of bacterial overgrowth. Specifically, I would get an Organic Acid Test (OAT). The OAT is a metabolomics test from Great Plains Laboratory that assesses a number of metabolic pathways in the body, as well as checks for any bacterial and yeast overgrowth in the GI tract.
The elevated C4a suggests mycotoxins and I would recommend contacting a lab that is proficient in this type of testing. If your C4a is persistently elevated despite the elimination of all mycotoxins then I would consider the use of Vasoactive Intestinal Peptide (VIP) spray which has been helpful in reducing brain inflammation for people suffering from mycotoxicity. I would also recommend that you cultivate a regular meditative practice as this has been shown to decrease inflammation as well. There is more that can be done but I hope this will offer you some insight into your next step.
There is still a great deal that we need to learn about neuroinflammation and to this end, I have created a charitable foundation for education and research dedicated to finding a cure for individuals such as yourself who are suffering from chronic pain. To learn more about The Foundation for Total Recovery, please visit www.BrainOnFire.org. I hope you will consider participating in our efforts to find a cure.
With my best wishes for your optimal health,
– Gary Kaplan, DO