This entry marks my third and final installment regarding the book, "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease" by Richard Horowitz, MD. It also marks a progress report as far as putting these ideas into practice and the obstacles for many Lyme Disease patients, particularly those who cannot afford the many diagnostic tests or even the fee to see a LLMD such as Dr. Horowitz.
Far from seeming like the egomaniac that some critics (like on the WP review page) paint him as being, Dr. Horowitz appears like an earnest medical detective, willing to incorporate any and all successful practices or therapies that he has come across in his 25+ years of treating patients. Some of these suggestions may seem radical coming from an MD. He includes discussions with Traditional Chinese Medicine practitioners and gives advice about diet, exercise and (omg) meditation. One could understand if a reader wonders about his medical expertise. He is, however, board certified in internal medicine and in at least one video you can see his medical degree from Northwestern University over his right shoulder.
What remains striking about this book is how interrelated medical dysfunction can be. The tick bite is the spark lighting a fuse, but the fuse for many already exists in terms of other forms of imbalance. Lyme and its co-infections intensify nascent problems ripe for exploitation. The field already was cleared and tilled, prepared for Lyme et al. to be planted, flourish, reproduce and continue to debilitate the human body. This book represents something of an adventure as Dr Horowitz attempts to detangle a Gordian knot. As he prominently asserts, only by addressing all the factors that lead to chronic illness, can the patient get better.
I made the following summary of the book not long ago, in comparing the cases he discusses in it to an episode of "House." In the program, the plot tends to revolve around identifying what is wrong with a patient, usually a singular cause (this follows Dr. Horowitz's discussion of a rule by Louis Pasteur that one disease has one cause). About 50 minutes of every episode follows this pursuit for that elusive, singular cause and the small remainder concerns the patient's cure and release from Princeton-Plainsboro Teaching Hospital. For those chronically ill patients of Dr. Horowitz, the diagnosis, while not simple, is not really the most difficult part. The hardest aspect is finding what does or does not help the patient and what beyond Lyme/co-infections is holding the patient back. It may be more than one thing.
This concept challenges a lot of accepted medical belief because it requires doctors to work together much more collectively and cooperatively. But in taking just one later chapter -- sleep/insomnia -- into account, most of us can innately understand why this approach works. Most of us know we cannot function without sleep and a lack of it makes people feel irritable, among other things. In my case, I have trouble digesting food properly, which can manifest itself in way that will come across as TMI. I had some, if manageable, issues with sleep before my tick bite in 1996. I have developed a full blown case of "Lyme Time" (being awake when everyone else is asleep) and have fully embraced it, because I like the quiet. But for those with stressful jobs or children, sleep is already compromised, and being awake for bathroom use or other problems means insomnia can be a constant issue, keeping a patient from any semblance of restorative sleep.
In my own case, I think some of the more esoteric aid I'm getting is via something called Healing Touch, a practice typically performed by RNs trained in "energy work" (which could be an entry on its own). My situation could best be helped if the doctors I already consult (as per insurance) have some knowledge of this book and its advice. (My Healing Touch practitioner is a Lymie herself.)
My first opportunity to promote this book came a few weeks ago. I see an infectious disease doctor -- that is, from a discipline that many Lymies revile. The reason? Politics. The Infectious Diseases Society of America (IDSA) has stuck to its guns in recent years to claim that Chronic Lyme does not exist. Why people like me test positive for Lyme or a co-infection like Babesia is typically fobbed off as some kind of "false-positive" and, lacking another explanation, patients like me are given diagnoses like MS or CFS. Frankly, one never knows what will happen, but I have shown enough gumption in the past to push back when any doctor even skirts near the "false positive" narrative.
I was reading this book in the Waiting Room and struck up a conversation about it. I kept the book open while waiting in the exam room, too. There was zero drama. As soon as my doctor entered, he said (more or less), "Oh, you're reading that book. I was going to recommend it to you. I just started it myself." He even remarked that "You're farther along than anyone I know." Wow. He KNOWS others are reading it. I'm kinda impressed.
Of course, this may not fully change the limits of what he can do as of yet (doctors have had insurance companies complain and get licenses challenged, even suspended, if they prescribe too many meds), but he'll be in a position to work within his system to the maximum benefit of patients. He will have ideas about potential herbal supplements he can recommend or equipment he can recommend like the portable FIR sauna (pictured above). And perhaps over time he can convince others that the current IDSA guidelines need changing.
Next up for me: my primary care physician. I like her. As with Dr. Horowitz, she is an internist. The integrative nature of Dr. Horowitz's discussion of chronic illness will likely make sense to her, though she does not practice Integrative Medicine. I am thinking she would be in good position to take note of my problems with things like adrenals or estrogen dominance, liver or GI problems. I did not have an appointment with her in the near future, however. Yet I wanted to ensure that she heard about this book. So I faxed a letter. Haven't heard anything as of yet. I am sure I will follow up in 2014. Given the fact that there are substantial numbers of deer populating the area near her office, I am hopeful.
In the meantime, I have bolstered my own supplement regimen with things recommended by Dr. Horowitz -- or as best as I could approximate on my budget. These include supplements like Curcumin, Acetyl-L Carnitine, Zinc and Grapefruit Seed Extract (GSE).
My next doctor to approach is a neurologist who felt I needed to have a lumbar puncture (spinal tap) done. I have always been hesitant about this and Dr. Horowitz discusses its diagnostic limitations. I will likely write the letter after my 2014 health insurance situation becomes clear (story onto itself and my state is at least as responsible as the ACA). I will likely talk to my cardiologist about possible relevance, too.
While it would be great to be able to see Dr. Horowitz or even a more local LLMD, the cost is at least somewhat prohibitive, especially when it would go to a consultation and not actual treatment. It is this problem that makes Lyme/co-infections so difficult to grasp for the average person: the costs with the lingering, insidious nature of this condition make the situation all but intractable.
I subsequently found out (though Dr. Horowitz did not comment on this) that my strand of Babesia (duncani or WA1) is often considered the hardest to treat. I wasn't surprised. It just means I have to hit it in as many ways that I can with as much as I can. This book has given me ideas for ammunition.