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WHY CAN’T I GET BETTER?
SOLVING THE MYSTERY OF LYME & CHRONIC DISEASE
I have a confession to make. I have perused (translation: skimmed) Dr. Richard Horowitz’s book, Why Can’t I Get Better? several times and my sense of it was that he had written the best overview of Lyme disease and how to treat it. I have recommended the book to dozens of my patients.
So finally, I have gotten around to reading this book (with the title of this newsletter) cover-to-cover, and I would like to discuss it in this issue in more detail, as I am impressed and delighted that this book is, indeed, a must-read for both patients and physicians who are wrestling with Lyme disease. Actually, this book is about much more than Lyme disease: Dr. Horowitz clearly explains our current understanding of chronic illness from his many years of work with patients with Lyme disease and coinfections. (This discussion involves just this first book by Dr. Horowitz, published in 2013—his second volume, which came out in 2017 will be noted below).
Most of us began working with Lyme disease as if were merely another (but nastier) infectious microbe. Over time, it became apparent that in order to treat it properly, we had to understand not only how to kill this bacteria, but also to manage the profound toxicity that it created when it was being killed, and to understand and treat the many other body systems that were affected by the persistent inflammation that these infections engendered.
Dr. Horowitz, who has been at the forefront of working with patients with Lyme disease, has done a masterful job of putting all of this information together in this exceptional book. To emphasize the complexity and nature of this process, he has renamed this as MSIDS: Multiple Systemic Infectious Disease Syndrome, and describes this as “a road map for identifying the multiple components” of MSIDS. When patients present to him, he utilizes this road map to analyze the many factors that contribute
to creating their chronic illness and then sifts through this information to create a working treatment program.
Let’s review his sixteen-point diagnostic map, by looking at the overlapping factors that contribute to chronic illness:
- Lyme disease and co-infections
- Immune dysfunction
- Environmental toxins
- Functional medicine abnormalities with nutritional deficiencies
- Mitochondrial dysfunction
- Endocrine abnormalities
- Neurodegenerative disorders
- Neuropsychiatric disorders
- Sleep disorders
- Autonomic nervous system dysfunction and POTS
- Gastrointestinal disorders
- Liver disorders
- Pain disorders/addiction
- Lack of exercise/deconditioning
Each of these subjects receives its own chapter in this book so that Dr. Horowitz can go over each in more detail. Although Lyme disease is the underlying cause for, or major contributor to, a great deal of chronic inflammatory illness, Dr. Horowitz has expanded his understanding of this amazingly complicated illness to encompass a much wider scope. As I have alluded to in many of these newsletters, and my books, unless a medical practitioner can take into account all of these dysfunctional systems to address them properly (allowing for individual variations: we are quite different in terms of our genetics, chemistry and exposures), many patients will not be able to heal completely.
He presents case after case in which simply treating Lyme disease or co-infections was not sufficient for recovery to occur. For some, he needed to look at hormonal imbalances; for others, heavy metal toxicity; for others, emotional and spiritual issues needed to be addressed; for others, looking for sleep apnea, or a dysfunctional liver and/or gall bladder; for others environmental toxins (e.g. mold)….and so on.
This book constitutes a wonderful overview of this complicated field and an excellent starting point for patients and physicians to look at their illnesses in a much more comprehensive way. If I have anything to add, it would be that although mold toxicity is mentioned throughout the book as a contributing factor, my own bias is that it is so important that it should be an integral part of the evaluation for most patients.
For those who have been ill for a long time, and whose physicians have not explored these areas, on page 33 of the book, Why Can’t I Get Better”, readers will find the Horowitz Lyme-MSIDS Questionnaire which can provide a quick assessment of the possibility of a tick-borne illness and give the impetus to dig deeper if the probability of this is high.
An added bonus for physicians is the inclusion of Appendix A, which provides treatment protocols for MSIDS. Of course, this is only the beginning. This has rapidly become a medical field of specialization unto itself: the evaluation and treatment of complex medical illness. I would strongly encourage all health care providers who have realized that there are millions of individuals who are suffering, undiagnosed and untreated, to avail themselves of the opportunity to study with the various medical organizations that are devoted to teaching these principles: ISEAI, ILADS, TFIM, and AAEM being among the leaders of this effort.
The newest version of this book is “How Can I Get Better? An Action Plan For Treating Resistant Lyme and Chronic Disease.” It contains information that is more up-to-date and has a new chapter on persisters, discussing the use of dapsone and pyrazinamide. The Appendix has been expanded to include more information on medications and supplements/herbals which will be of great help to health care providers.
HOW A DYSFUNCTIONAL LIMBIC SYSTEM IMPACTS CHRONIC ILLNESS
When I first started recommending Annie Hopper’s DNRS (Dynamic Neural Retraining System) 6 or 7 years ago, it was primarily, if not exclusively, in the service of treating patients with MCS (Multiple Chemical Sensitivities). This program was being taught, by Annie Hopper for the American Academy of Environmental Medicine, and Butch Schrader, MD, who developed LDA, had found it really useful in getting his most sensitive patients started.
I, too, found this program to be of great value in helping my most
sensitive patients quiet down their out-of-control reactive nervous systems
and almost all of them were able to move forward in their treatment after using the DNRS program for 4-6 weeks. As my experience with sensitive patients evolved, I began to realize that limbic dysfunction/inflammation was far more common than I had appreciated, and I started recommending this for more and more of my patients with chronic inflammatory illness.
Specifically, those individuals with mold toxicity, Lyme disease with its coinfections, other infections, other toxicities, and/or viral and parasitic infections. At this point, I have now had somewhere between 150-200 of my patients use this program, and it has almost always been extremely useful. (I can’t say that about very many treatment programs.) Benefits range from good to superb, with obvious improvement noted within the first month or two of practice, and continuing to improve with time.
This has been most dramatic for those who are the most sensitive: those who are “stuck” in a state of reactivity such that virtually anything they take, be it a supplement, medication, even a homeopathic remedy, sets them back for days or weeks, before they can even get back to their compromised situation to try again.
I have found that these highly sensitive patients often need to spend several months quieting down their nervous system, using several approaches (which I detail in my new book, see below), but the most effective has been the DNRS program.
In her excellent book, “Wired for Healing: Remapping the Brain to Recover from Chronic and Mysterious Illnesses”, Annie puts forth a very clear explanation of what the limbic system is, and how it fits into our understanding of its role in contributing to the persistence of chronic inflammatory illnesses. I think it would be helpful to review that information here, so that we can bring this whole concept forward.
What Is The Limbic System?
The limbic system consists of several areas of the brain, namely, the amygdala, the hippocampus, the cingulate cortex and the hypothalamus.
The amygdala is thought of as the fear center of the brain, but actually
all emotion is processed by it. When in senses danger, it sends messages to the body in the form of stress hormones (cortisol) and is intimately related to the autonomic nervous system’s sympathetic “fight or flight”.
The hippocampus is primarily involved with consolidation of memory and creating new memories, and connecting those memories to smell, sound and emotion. Damage to this area may make it difficult to create a safe environment for incoming information or sensations.
The hypothalamus is the control center for all autonomic regulatory activites and links the pituitary gland (the “master” gland, which controls most of the endocrine system) to the nervous system.
The cingulate cortex integrates input from the thalamus with the amygdala and hippocampus and is also connected to memory, learning and emotional processing.
What Does The Limbic System Do?
Annie Hopper describes this succinctly as follows: “The limbic system interprets all of our sensory information, which, in turn, decides how our bodies should respond to external stimuli. The limbic system is also involved in our response to stress, in our emotional responses to events around us, and in our involuntary protective mechanisms (like the “fight or flight” response). It is particularly active when we are under stress or we are feeling anxious or threatened……..when the limbic system is not functioning properly, threat mechanisms can overfire and distort the interpretation of sensory information…which can lead to dysfunction and neurological disorganization.”
What Symptoms Suggest Limbic Dysfunction?
—Increased perceptions of any or all of these: light, sound, EMF, touch,
smell, or taste
—When exposed to smells, or scents (perfumes, chemicals, new carpets,etc.)
patients have an immediate (within seconds or minutes) experience of
brain fog, fatigue, headache, nausea, or neurological symptoms.
—Anxiety, irritability or panic attacks when exposed to specific scents
—Unexplained brain fog or fatigue
—Unexplained severe pain or discomfort
—Heightened sense of smell or taste
—Inability to tolerate many foods or medications or supplements
—Mood swings or difficulties with focus and/or concentration and/or
If all of these symptoms would also suggest, CFS/ME, or fibromyalgia, or seems similar to the manifestations of Lyme or mold toxicity, that would be correct. If this also seems related to our recent discussion of Polyvagal Theory and how a feeling of safety (or lack of it) profoundly impacts our nervous system, that would also be correct.
So, it becomes increasingly apparent that limbic dysfunction in the form of inflammation and improper “wiring” may play a very important role in contributing to the full spectrum of the issues that underlie chronic inflammatory illnesses.
It also becomes increasingly apparent that including the treatment of the limbic system into our plans for our patients becomes an important component of that treatment, especially when our patients are unusually sensitive.
Fortunately, Annie Hopper has put together a wonderful (and do-able) treatment program to quiet the inflamed limbic system, which she pieced together by studying the newest research on neural plasticity (see my previous newsletter on the books by Norman Doidge, MD) Simply put, it is a series of visualizations and exercises which allows the hypervigilant limbic system to quiet down. Patients can access this treatment program by going to her website and ordering DVDs which will take them through the process step-by-step, or going to one of her 5-day workshops. While the workshops are recommended, my most sensitive patients would be unable to tolerate the hotel environments until they had the opportunity to work extensively with the DVDs first. An hour a day of practice is recommended, but many of my most sensitive patients need to start with 10-15 minutes a day and work up from there.
I hope that this brief discussion of the limbic system and how it impacts the health and well-being of our patients will add to your understanding of this component of chronic illness. I suspect we are just beginning to grasp how essential this is, and by addressing it earlier in treatment (when patients are so reactive that their therapeutic choices are limited), and again, later in treatment when the causes of inflammation have been successfully taken care of, I think this will help patients to heal more quickly and completely.
ALLERGY TO MEAT: A NEW EPIDEMIC?
Just when you thought it was safe to wander through the woods,
along comes a new observation: the saliva of tick bites can cause allergy
An excellent review article by Moises Velasquez-Manoff
(the author of the excellent book An Epidemic of Absence ) from the New York Times Magazine, 7.29.18 describes the evolution of our understanding of this newly recognized phenomenon.
Meat allergy in this form was first described in 2009, and appears to be triggered by a tick bite. Initially, the tick identified was the Lone Star tick
common to the Southeast. It is unusual in that most allergies are set off by
an immune system reaction to proteins or lipopolysaccharides, but this one is triggered by a reaction to a complex sugar named galactose-alpha-1,3 galactose, shortened to alpha-gal, which is present in tick saliva.
To be clear, we are not talking about a tick-borne infection here, but
rather to an allergic reaction to one of the contents of tick saliva. The reactions can be severe and life-threatening but often delayed
(unlike anaphylactic reaction which can occur in minutes) by several hours after the meat has been ingested. Symptoms mainly consist of generalized hives and pruritis (itching) but at times can involve shortness of breath and swelling of the throat. The treatment is similar to that of other intense allergic reactions: injected epinephrine and/or Benadry.
Once sensitized, some individuals find they can no longer tolerate beef, pork, or lamb (even milk or butter). Cases of reaction to kangaroo steaks have been reported in Australia.
It is not only the adult form of the tick which carries this risk, but the
larval (seed) forms as well. It turns out that alcohol or exercise will exacerbate this reaction, and if the meat is grilled, it may be less reactive.
It remains to be seen whether other ticks can contribute to this problem.
The moral of this story: Check yourself for ticks after every hike; if a tick is removed early before actually biting and injecting saliva, this risk is clearly minimized.
This is the current working title of my new book, scheduled for
release on October 9th. I am really excited about this project—-I have
enjoyed this creative endeavor more than any other book I’ve written and
feel that the information will be of great use to both health care professionals and
consumers. As it evolved, I asked a number of cutting-edge integrative
practitioners to add to sections of the book to provide their perspective, and
in doing so it has taken on a sense of a shared experience which has made it
Essentially this book is about unusually sensitive and toxic
patients that have struggled with all kinds of treatments: how to understand
the causes for this extreme sensitivity/toxicity and then how to approach
treatment using the Rebooting Model as a new paradigm of healing. Writing
about this material has been a true labor of love, and I am delighted that the publisher,
Victory Belt, has fast-tracked its release.
I would like to provide one of the last chapters in the book, a story of
healing provided to me by a woman (whose name I’ve changed) with whom
I consulted, as a message of inspiration and hope:
ENDING ON A HOPEFUL NOTE
While I had thousands of stories to choose from, I think Betty’s Story is of particular interest as she went from housebound to getting her life back. Here she tells her story in her own words:
“I was 48 years old and had been sick for over sixteen years. Before I became ill, I had been a researcher at a national lab, an adjunct professor, and a member of a local dance company. I had been diagnosed with Lyme disease, suspected I had been exposed to mold, and had an extreme level of light sensitivity triggered by the antibiotic treatment for her Lyme disease. The light sensitivity manifested as a deep, sunburn-like burning on my face and the backs of my hands. Initially I was only affected by sunlight, but eventually regular room lights began to burn me. When I found Dr. Nathan, I had been living completely housebound and in the dark for seven years. I hadn’t seen the sun in fourteen years. I used modified (to be dimmer) flashlights to navigate daily life, and all my windows were covered with blackout fabric that was taped at the edges. Even a few seconds exposure to the light from a television or computer screen burned me. My husband had to remove the light bulbs from our refrigerator, dryer, and oven. My house was so dark, I couldn’t see my hand in front of my face. It would take months to recover from an accidental flick of an untaped light switch. Just getting access to medical care was a challenge.
My problems started in 1996 with bilaterial achilles tendonitis that made it difficult to walk without pain. This was followed by chronic dizziness after a minor car accident in 1998, followed by bilateral carpal-tunnel-like nerve pain that disabled me to the point where I was no longer able to work as an electrical engineer in 2001. In 2003, I tested positive for Lyme and the coinfections, Ehrlichia, Anaplasma, Bartonella, and Babesia. After a 3-day course of Zithromax for a diagnostic test, I developed a deep sunburn with minimal sun exposure. Three months after this initial reaction, the burning still had not resolved, but I began Lyme treatment and took antibiotics for 4 years while avoiding outdoor light. This resolved my carpal-tunnel symptoms, but did not resolve my chronic fatigue and joint pain. I never felt like I got well on the antibiotics, and I eventually discontinued them, hoping my light sensitivity would go away. It didn’t.
I also tested highly positive for mold antibodies. In 2007, I moved and got rid of all of my belongings, but did not experience any improvement. In 2010, I experienced a six-week-long excruciating period of burning on my face. In this time period, I also had to take a week of antibiotics for an infection, and that worsened my light sensitivity to the point where I had to avoid regular room lights and live in the dark, becoming completely housebound. In 2013 my vision began to oscillate. Any movement made the world look like it was bouncing up and down. In the spring of 2016, I began to experience crawling sensations on my skin. Daily life had been hard enough, but this symptom felt like my breaking point.
I tried supplements to help my methylation cycle, and I tried binders and glutathione in what I thought were small doses. I tried one sip of one drop of low dose naltrexone in a glass of water. They all made me feel worse and I had to discontinue them. Herbal treatments were tolerated better, but I was still sensitive and didn’t recover. I was often puzzled that something would help initially, but ultimately make me feel worse. Everything I tried seemed like a false start and a dead end. Nothing budged my light sensitivity. It felt like banging my head against a brick wall.
My symptoms were phototoxicity, oscillating vision, a feeling of eye pressure, chronic fatigue, body ache, joint stiffness in knees, toes, and fingers, heart pounding, dizziness, light-headedness, history of fainting and pre-syncope, chemical sensitivity, post-nasal drip/chronic dry cough, intermittent low grade fever, feeling of head/sinus pressure, low resistance to colds and flus, and crawling sensations. I also had low thyroid and adrenal hormones, high rheumatoid factor, and I was low in two IgG subclasses.
In late 2016, a friend told me about a book written by a woman who had also been living in the dark. I contacted the author and learned about MCAD. I started consulting with the author’s nutritionist in England, who linked my light sensitivity with a histamine problem. I started on a low-histamine diet, histamine-reducing probiotics, and Neuroprotek. And they helped! I was able to get back on the computer, where I found Dr. Nathan. As soon as I watched an interview of Dr. Nathan’s, I felt like I was one of his “sensitive patients.” I emailed him, and his office’s (Cheryl’s) reply was so quick and so kind it brought tears to Betty’s eyes. Most doctor’s weren’t even willing to talk to me if I couldn’t come into their office, but I could tell Dr. Nathan had read my medical history thoroughly, and he answered all of my questions. I was also very grateful that my local doctor was extremely open to working with Dr. Nathan.
I started with Annie Hopper’s Dynamic Neural Retraining System and found it tremendously beneficial. I immediately felt like my fatigue reduced by about 80%. I continued with Neuroprotek, the diet and probiotics, and gradually added in Claritin, ketotifen, Perimine, Allqlear, DAO, Chinese skullcap, ToxEase, Renelix, Itires, Viscum, and Psy-stabil. And—to my amazement—I started to recover. My light sensitivity improved and the crawling sensations lessened. After my RealTime test came back positive for ochratoxins, tricothecenes, and gliotoxins, I started Saccharomyces boulardii, chlorella, and bentonite clay. For several months, I could only tolerate one drop of the bentonite clay, but from the first dose my oscillating vision started to go away. The idea that “less could be more” was a revelation to me. Eventually I was able to add in cholestyramine and charcoal, and the nystatin spray.
At first, I couldn’t tolerate even the small doses that Dr. Nathan suggested. But slowly I was able to take more, and at about six months into treatment things really started to shift. I started with a string of red Christmas lights, then began to open my blacked-out window shutters a minute earlier every day. I became able to exercise. I was able to take some of the burden off of my husband who was also severely ill with Lyme and mold illness. I cried from pure joy the first time I saw the sun again (while listening to The Cure).
As of today, I have the lights back on in my house and I am able to go for sunset walks in the park. I have been enjoying going out to dinner with my husband and reconnecting with old friends. I went to a movie and a play for the first time in seven years. I saw myself in the mirror for the first time in seven years. I can see her family again. I can see again. I have met her neighbors after living in my house for five years without ever having been seen. I figured they probably suspected my husband of making me up! I will never tire of looking at the sky.”
There are, unfortunately, thousands of people, like Betty, whose lives have been disrupted completely by their illness. Because the description of her symptoms are unusual and vivid, few physicians were able to listen to these symptoms without dismissing them out-of-hand as being “obviously” psychological. The only thing obvious to me was that they did not understand what was being communicated. This was not a psychological illness, but rather a consequence of mold exposure and infection with Lyme and coinfections, that created this debilitating sensitivity. Once understood, it could be treated. It is heartwarming for me to be able to help the Bettys of this world to get their lives back. Just yesterday she sent me this picture of herself frolicking on the beach at Point Reyes!
I hope and pray that patients and health care providers, alike, can listen to this story and appreciate that no matter how disabled a patient gets, there is real hope that they can fully recover and get their lives back.
May this information resonate for you and enable you to find your path for complete healing.
Betty at the beach!!