I have been so interested in the mechanism of my daughter’s illnesses that I find any books on the topics to be extremely intriguing. For reviews of books on Lyme Disease, PANDAS/PANS, and Autoimmune Disease click here. My daughter’s pediatrician (who has now left to start her own practice elsewhere) recommended the book “Infectious Madness: The Surprising Science of How We ‘Catch’ Mental Illness” by Harriet A. Washington. Another book that took my interest was “Brain on Fire: My Month of Madness” by Susannah Cahalan.
“Infectious Madness” starts with a passage that hooks you. I had no idea of the facts that she presents and I wonder how many people actually do. She states, “The earth alone holds five million times more microbes than there are suns in the universe. It is home to five nonillion infinitesimal beings–that’s a 5 followed by 30 zeros.” Did you know that five million bacteria and fifty million viruses are present in every teaspoonful of sea water? It makes you wanna go for a swim in the ocean, right? Most astonishing, however, is the fact that MICROBES DO NOT JUST INFECT US, “THEY ARE US,” explains Washington. WE, AS HUMANS, HARBOR MORE MICROBES THAN HUMAN CELLS. Our intestines alone are home to one hundred trillion viruses, fungi, protozoans, and–mostly–bacteria. “THESE SINGLE-CELLED GUESTS OUTNUMBER YOUR CELLS TEN TO ONE” Were you aware of that?
Washington goes on to explain how fetal exposure to infection has a correlation with one’s psychiatric fate. There is a “seasonal” pattern in that children born in the winter months (in which infection is more rampant) have a higher likelihood of developing Schizophrenia or MS later in life. She describes the connection between Syphilis and Pareses, infection and Schizophrenia, Strep and PANDAS, and even retroviruses and Multiple Sclerosis. In the author’s search for a causal connection between infection and mental illness, she came across historical evidence. Patients with syphilis once filled one in every five beds in the mental asylums of New York City. When scientists discovered that penicillin cured syphilis, they also discovered a cure for the common mental disease of paresis. For those who struggled long with the illness, however, some of the effects were irreversible. Why is it so hard for doctors today to believe that infection and microbial imbalance can cause chronic physical and mental symptoms? It is a fact that microbes can trigger cancer (e.g. HPV- human papillomavirus); hepatitis (e.g. hepatitis C virus); ulcers (e.g. H. Pylori bacteria); and heart attacks (e.g. Chlamydophila pneumoniae bateria). Many of my daughter’s symptoms looked like SLE (Systemic Lupus), which is the reason she was misdiagnosed and, in my humble opinion, if we had not caught the lyme and co-infections, she would have continued on the path to severe, chronic autoimmune disease. And that would be because the doctors told us she had a psychological condition called “Somatoform Disordrer” and the only treatment options were SSRI’s, psychological counseling, and ignoring her complaints.
Scientists are making connections between autoimmune diseases and infections. For example, an article in the Journal of Translational Immunology describes “The Role of Infections in Autoimmune Disease.” Another example is in The British Journal of Medical Practitioners titled, “Bacterial Infections and the Pathogenesis of Autoimmune Conditions.” In fact, if you google “infection and autoimmune disease,” tons of health articles will appear such as these from “Science Daily” and “Everyday Health.” It’s a real-life War of the Worlds–humans versus microbes. The ironic parallel is that in the book, “War of the Worlds,” by H.G. Wells, it is the earth’s microbes–those which are of little harm to us and likely a part of our being–that kill the martians in the end.
This relationship with microbes is important to human life. It is one reason why probiotics and herbal microbial balancers are so important. We need to fight the “bad” bacteria with the “good” bacteria. We also need to re-balance the immune system instead of suppressing it to address the symptoms. To do this, doctors need to think out of the box. My daughter’s current long-term treatment plan includes 2 different antibiotics, 1 anti-fungal, 1 anti-parasitic, 1 anti-inflammatory, 2 different probiotics, 3 different herbal tinctures, and 4 different vitamins/supplements. This is the plan that is, so far, keeping her well and hopefully curing her. She is doing much better but still has some complaints so her specialist changes things up as needed.
It is interesting to note that modern medicine does have in practice the procedure of “Fecal Transplantation.” Fecal transplantation (or bacteriotherapy) is the transfer of stool from a healthy donor into the gastrointestinal tract for the purpose of treating recurrent C. difficile colitis. I do believe it is being used for other diagnoses as well and it is working!
A fantastic film to watch is the documentary, “Life on Us: A Microscopic Safari,” which you can find on Amazon Prime and on Youtube. “Just like planet Earth, our body is composed of diverse landscapes and habitats for a surprising array of wildlife. ‘Life On Us’ offers a unique perspective, encountering the creatures that live, thrive, compete, feed, breed, are born or die on or in our bodies.” This film also discusses fecal transplantation and a host of other topics related to bacteria and chronic illness.
Moving on, to the book by Susannah Cahalan, “Brain on Fire.” The author was an up-and-coming reporter at the New York Post whose world spiraled out of control leading to her waking up one morning in a hospital room with no memory of how she got there, strapped to her bed and unable to move or speak. It was 2009 and she almost slipped into the darkness of being misdiagnosed with a debilitating and progressive mental illness that was, in reality, caused by an over-active autoimmune response in the brain which had been in response to an infection. It was fortunate for her that Dr. Souhel Najjar joined the team and tested her and diagnosed her with Anti-NMDA Receptor Encephalitis. Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.
I do give credit to the doctors at the children’s hospital for actually testing my daughter for this condition when she was hospitalized. It was negative of course. I am dismayed, however, that they did not give the same credence to the Cunningham Panel, which tests for antibodies in the brain as a response to infection, which causes PANDAS/PANS. She had a blaring strep infection and ASO titers that continued to go up even with treatment. Six months later, my daughter tested positive on that test. I look at Susannah’s story as a reflection of what these kids with PANDAS/PANS are going through because the mechanism of the disorder is the same. (Some kids with PANDAS/PANS are actually diagnosed with having post-infectious encephalitis and many wonder if that is actually the correct term for the disorder. Plus insurance covers treatment for encephalitis but not necessarily for PANDAS/PANS).
An exciting thing about this book is that it is soon to be a major motion picture starring Chloe Grace Moretz. Brain on Fire, the movie, will be in theaters this year!
In closing, I have to link to this story that my dad has told me a few times since I was young. I feel like it is a good analogy of what goes on in the medical community when their belief systems are challenged. Take the handle off the pump!!