Saturday, December 9, 2017

DX Severe Osteoporosis: Part IX - Seeing Specific Threads of the Web


This is Part IX of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health.


                        "We all see mountains. It is how we climb them that is different."

                                                                                Crucibles of Will


When the body is injured, the immune system's inflammatory response infiltrates the area cleansing it with blood and scavenging, destroying invading organisms. In situations of injury, inflammation can be the magic to survival, but in chronic disease, it is the destroyer of life as we once knew it. Chronic systemic inflammation, in fact, is the major cause of osteoporosis.

To initiate the inflammatory response, the body's first step toward protecting and healing damaged tissue is to put out a call for prostaglandins. These are naturally occurring chemicals that relax smooth muscle and cause peripheral vasodilation to facilitate blood flow. The body produces a specific prostaglandin called PGE2 from fatty acids found in abundance in red meat and dairy products. In addition to vasodilation, PGE2 is responsible for the fever we get when we are sick. It can also be responsible for muscle and joint pains, and, even skin sensitivity—one of my symptoms. These sensations can happen when there is an imbalance in dietary fatty acids, such as an excessive intake of omega 6 fatty acids, even when we aren't sick. It sure was looking like my discovery that I was low in omega 3 fatty acids, coupled with Gilbert's syndrome, may not only connect the dots to my symptoms, but also to my elevated bone resorption markers...and to my osteoporosis.

There are other prostaglandins not directly involved in the inflammatory response but which help prevent excessive inflammation. These prostaglandins are derived from the omega 3 fatty acids, ones found in oils from flaxseed, algae, and in cold-water fish. The sources of these fatty acids happen to be less prevalent in the typical American diet, and this is part of the reason why deficiency is common. That is, deficiency from terrible diets, which I was now beginning to see, was mine.

I felt like I was on to something important, or at least my forever positive attitude was grasping for something—anything—to shed some light on this thing. I dug deeper into the research about prostaglandins and as it turned out they weren't just important for the inflammatory response, but they were involved in bone metabolism! Prostaglandins are made by osteoblasts and can stimulate both the formation and resorption of bone. This was certainly another huge clue. Here was something that seemed to link my vague symptoms (skin sensitivity, irritability, and intermittent feelings of weakness) to two different body systems: the immune's inflammatory response AND bone biology. In addition, it was my first indication that the chronic hip inflammation and the bone loss could be linked after all. I kept remembering what an endocrinologist from the Mayo Clinic and the one from California had said, that there was "NO connection" between my persistent hip pain and the osteoporosis. They acknowledged the connection between the hip stress fractures and the osteoporosis but not the persistent hip inflammation. I didn't understand how they could be so sure about something like that.

But why was I deficient in fatty acids? The endocrinologist had told me that he had tested for diseases that could interfere with absorption, but that these tests came back normal. Plus, I had none of the symptoms typically seen with tropical sprue, Whipple's disease, Crohn's disease, Zollinger-Ellison syndorome, or any of the other 20 or so absorption disorders described in the medical texts.

When I began to look more closely at my diet I discovered that even Americans eating a fairly "good" diet aren't getting enough omega 3s. If highly processed foods, especially ones made with hydrogenated oils, are a large part of ones diet, imbalances of fatty acids become even more common. Looking back to my intense training years, I was certainly not as vigilant about eating well or for that matter eating at all. At times when money was tight I may have just let meals slide, and certainly processed foods were part of my diet. Even so, I felt there had to be more to this picture than just diet. Currently I was eating more healthy foods, avoiding junk foods, and consuming salmon and other cold water fish that were good sources of omega 3s. I knew that eating healthily and taking in good quality nutrients was only one part of the complex process of nourishment for life and growth. There just had to be more to this story.

I went back to thinking about problems that could interfere with the absorption of nutrients, like poor digestion or malabsorption. The more I read about osteoporosis, the more celiac disease popped up in the writing. But the endocrinolgist had ruled out celiac disease. Or had he? I went over the prior lab work from over a year before and found the test results for anti-tissue transglutaminase IgA (tTGA) (the blood test for celiac disease). The result: 19 U/mL with a reference range of less than 20 units as negative, 21 to 24 units as borderline, and 25 units and over as positive for celiac disease. Yes, it looked like I was negative for celiac disease. But I got to thinking, how can this be a pregnancy "yes/no" type test? It didn't seem like that at all. What was this tTGA test testing for anyhow? When I found out that transglutaminase was an enzyme released by gluten damaged enterocytes (cells lining the intestinal tract) and their microvilli (small appendages for better absorption of nutrients) in the gut it clicked! If my test result was 19 U/mL and 20 is borderline positive, well, there MUST be some kind of damage to my gut taking place. Maybe not total damage to the extent that my gut's microvilli 
were totally atrophied (flattened) (which is what happens in Celiac disease) but damaged none-the-less.

Celiac disease is an intolerance to gluten in wheat, barley, and rye that causes all kinds of abdominal symptoms. Bloating, diarrhea, constipation, these are all symptoms of celiac disease. The more I read about the disorder the more intrigued and excited I got—especially when I came upon the term, silent celiacs. These are people who have celiac disease but have few or no symptoms at all when they eat food with gluten in it. Now I was really thinking, maybe my 19 U/mL for tTGA was significant after all.

I had none of the typical bloating, constipation, diarrhea, kind of symptoms seen with celiac. But I did have intense abdominal pain after hard runs that I was now relating, at least in part, to Gilbert's syndrome. With this elevated tTGA test result it occurred to me that although I may not have full blown celiac disease I sure could have a sensitivity of some kind to gluten. A sensitivity severe enough to cause some loss of absorption or an influence of some kind on my bone health. I knew I needed to do some more testing on my own. The next two tests I did were the antibodies for gliadin (gluten), IgG and IgA. The results: 36 and 42 units respectively. With a reference range of less than 20 units being negative and 20 or more units indicating that antibodies to gliadin were detected, I knew this was significant. I may not have celiac disease with microvilli flattening but there was enough sensitivity to gluten that the enterocytes were "leaking" transglutaminase. These cells were certainly not happy and indeed were causing an immune inflammatory response.

With these results, the possibility of nutrient malabsorption was a concern. And even if the damage from gluten in my diet wasn't severe enough to cause severe malabsorption my research uncovered a little known fact. One that most doctors have no idea exists. Bone loss caused by gluten sensitivity is not simply from the malabsorption of nutrients. A person's sensitivity to gluten can lead to bone loss through two completely different physiological mechanisms. Besides causing damage to enterocyte microvilli which leads to malabsorption, gluten sensitivity triggers a systemic rise in proinflammatory cytokines. These cytokines, along with the release of a protein called zonulin by the enterocytes, causes the tight junctions between the cells to separate forming the condition of "leaky gut". Gluten and other huge molecules enter through these large openings setting off a systemic inflammatory response (thus the elevated anti-gliadin IgG and IgA tests). When this occurs for months and years at a time, it can produce a chronic systemic inflammatory response. Yes, I was now seeing real, specific threads in this entangled web of bone loss. It was one of the most powerful aha moments in my life.



"Hang out with your fear when you're feeling afraid. Follow its movement. Become intimate with it. Fear is an opportunity. Approach it like a tracker in the forest — watch where it goes, what it does, what it eats, where it eats, where it rests, where it turns, where it stops, where it hides. Embrace it. Stay with it."
                                                                                Paul Rezendes, The Wild Within

                                                                                              
 ... Stay tuned for Part X of DX Severe Osteoporosis


Sunday, November 19, 2017

DX Severe Osteoporosis: Part VIII - Implicate Medicine



This is Part VIII of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health.


                              "So the relationship of each moment in the whole of all the
                              others is implied by its total content: the way in which it "holds"
                              all the others enfolded within it."
                                               David Bohm, Wholeness and the Implicate Order



My constitution was fire, according to the acupuncturist. Looking back over my life and the intensity with which I approached things...well, I could relate to that assessment. But the smell of being "scorched"...that was just embarrassing...

Bone has three main functions: it supports the frame, protects organs from hard knocks, and acts as a reservoir for energy (fat) and minerals. I had a hunch that it was the last that would hold the most clues to the cause of my osteoporosis, especially since the biopsy showed that my bones were gaunt, with thin, disconnected trabeculae. They looked totally spent—scorched from years of, well, that was the question. Years of what? Malabsorption of nutrients? But the doctor had said I didn't have any absorption issues. Could it have been all those years of training in athletics? With my eyes focused on making the US Olympic Team since I was 13 years old, I had certainly stressed my body to the core. Had it been all those years of stressing my adrenal glands, stressing the overall functions of my body, that had sucked the energy out of me. Could those years have sucked the reserve function right out of my bones? There are lots of athletes who train hard for years and years and don't end up with osteoporosis. So that, at least by itself, wouldn't make sense either. But there was no denying, from the biopsy, it certainly looked like my bones had given just about all that they could give. And now, at the age of 45, all that was left was just empty chambers. And it looked as if they had been running on empty for quite some time.

The endocrinologist had ordered over 30 lab tests but everything was coming up normal, or at least that was his interpretation. At first I just went along with what he said; after all, his expertise on the subject was obviously considerably greater than mine. But, by a year into this mess (of being diagnosed with osteoporosis) my understanding of the technical aspects of bone loss improved and I began to look back over the lab tests more closely. While they were mostly pretty good, I noticed that some of the results were just a little off, just a little out of the normal reference range. I began to wonder, could these have meaning, as they relate to osteoporosis, that the doctor may not have understood?

Doctors focus on body parts and body fluids to help them understand a disease. But it's really impossible to understand everything...every slight variance in lab test and every "minor" symptom a patient presents with. And even if a doctor did understand these variances, would they try to put all those bits of information together, like pieces of a puzzle, in an effort to understand the patient as a "whole?" For example, I had told my endocrinologist that my skin was sometimes extremely sensitive, at times I was irritable (for me that was really unusual), and my stomach often hurt after long intense runs. I had also told him that I sometimes felt a slight overall body weakness. I couldn't really describe some of these feelings very well and I guess my ability to compete on a high level in road races and triathlons put him at ease that these vague symptoms weren't from something terrible brewing. In fact, he didn't seem to be interested in any of these symptoms, and as for the slightly-off lab work, that was quickly tossed aside.

After my biopsy, several months passed when I thought things might be better, but then I sustained several more rib fractures from very minor traumas. I was getting frustrated. I didn't see any progress in the investigation and now I was breaking again. We didn't seem to be any closer to finding answers to why I had osteoporosis than we were at the beginning. With each visit to UConn there was just a repeat of all the lab tests that had already be done...nothing new and no focus on what lead to follow next. In fact, there just didn't seem to be any leads at all. The only thing that was happening was just a reiteration that I needed to take a bisphosphonate medication which I did not want to do.

With my greater understanding of osteoporosis and my closer look at the lab work (especially those results that were just outside of the normal reference range), I noticed some interesting connections. The "normal" comprehensive metabolic profile (CMP) for example, showed an elevated level of bilirubin, a breakdown product of red blood cells.

My hunch was that each of my symptoms and the "slightly off" lab tests could have some significance. Each of these might hold clues to understanding the "whole" of me, or at least to the source of my severe bone loss. I felt that implicate* within each symptom, within each slightly-off lab test, there could be some view of the whole answer. Like cells that each hold the same DNA map of the complete organism within them, my symptoms had implicate within them the wholeness of my body's dysfunction. In other words, the biology of each symptom was part of the biology of the disease, which was part of the biology of my whole body's functioning. Each symptom was significant to some extent or another. But like DNA, which is nothing without the cell that cradles it, each symptom and slightly off lab test by itself had no meaning. Even the low bone density (bone quantity) meant little without a vision of the whole structure: what my risks for fractures were, what my bone quality was, what my muscle strength was, and how my organs were functioning. Everything had to be, or at least should be, looked at together.

In addition to the high calcium in my urine and the elevated N-telopeptide indicating a high rate of bone loss, I was now aware of this elevated level of bilirubin in my blood. Could this have meaning? When I thought back to the first weeks after my diagnosis, I now remembered that the endocrinologist had said that I had a mild disorder called Gilbert's Syndrome. In retrospect I saw that he was referring to this elevated bilirubin. But I also remembered that he said it didn't have any bearing on my osteoporosis and we had both quickly dismissed it.

Now, a year later, the elevated bilirubin** and my renewed interest in a possible malabsorption issue prompted me to run some lab tests on my own. One of these tests was for fatty acids and the results were startling. I was extremely low in polyunsaturated fatty acids. I didn't understand it, how could I be deficient in these? My diet included oils such as corn and safflower; I ate peanuts and fish and lots of other foods that contain high amounts of essential fatty acids. They were in my diet...but maybe I wasn't absorbing them? The endocrinologist said there was no connection in this either. But I started to think that maybe the fatty acid deficiency was somehow keeping the inflammation going on in my hip. After-all the hip was still hurting, a year now since the hip pain first began and since I had initially been diagnosed with osteoporosis.

Could the low blood polyunsaturated fatty acids and the Gilbert's Syndrome have something to do with the lingering hip pain—or the osteoporosis—or both! Maybe, I was beginning to see what could be the head of a faint trail. All of a sudden it felt as though I had stepped into nature's complex biochemical laboratory where life's continual transformations are fueled and formed. I began to understand chains of biochemical interactions that I never knew existed, and these chains, like strands in a spider web, were being woven by all the biochemical influences of every organ system in the body. The biochemical trails through this web were confusing and seemed infinite.

In an effort to uncover more strands to this yet completed web, I began to think back to the days in high school and college where I had so much abdominal pain after runs that I had to curl up on the floor and wait for the pain to go away. And then I remembered that this pain, although not as frequent or intense, but there none-the-less, sometimes occurred into my 30s...and, into my 40s. Not all the time, but just after hard runs I would sometimes have intense abdominal pains. It had actually just become part of me and I really didn't think about it any more. But now, reading about Gilbert's—nausea, abdominal pain, weakness—especially after the stress of intense exercise and dehydration...well, now things were starting to make sense. The web was starting to take shape.


                              There are things we can only learn about an organism by taking
                              it apart—but to understand that organism we must fully engage
                              with it as a dynamic, interconnected whole. It is no wonder that
                              different parts of the body—the skin, joints, spine, organs—may
                              all be affected by a disease process even when they have no 
                              obvious or direct physical, chemical, or neurological 
                              connection with each other or the process itself.



* "Implicate" (order) is a term developed by David Bohm, a theoretical physicist, who developed a mathematical and physical theory that explored the concept that everything is connected.


** (For more on bilirubin and osteoporosis visit my blog.)


Monday, October 30, 2017

DX Severe Osteoporosis: Part VII -- In Search of the Whole Skeleton



This is Part VII of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health. 


The universe is made up of individual particles that "flow within a continuous energy field encompassing a wholeness much greater than the thought processes which attempt to break the particles from their sea of wholeness."
                                                                                 David Bohm


When I first opened the door into the world of osteoporosis research, it was like walking into an anatomy classroom filled with lots of skeletons. Half of them were broken, missing parts and scattered about, and there was no teacher, just a huge pile of books dumped in a corner. About the only thing I knew was that you were supposed to take calcium supplements and eat lots of dairy. But
it didn't take long, the first book or two on the pile, to make me see that popular ideas about osteoporosis were far from accurate. I had a long way to go and I knew it.

Conventional Western medicine looks for certain signs and symptoms in a patient to match with what are considered the characteristic signs and symptoms of a particular disease entity. The doctor can't consider every physical manifestation that could be a clue to what is really going on because there just isn't time. Where do they draw the line? What physical, mental, or emotional conditions in a patient are significant, and which are not? Western medicine tends to select a small number of symptoms to consider. For each general complaint--headache, back pain, insomnia--there is a brief checklist of questions and a list of diseases to match with the symptoms. In my case, the initial list at the endocrinologist's office was twenty in length. The doctor's objective was not to discover my individual pattern, but to figure out which of a few disease-categories my bones might be dropped into. Having a specific diagnosis, even if it is just called "idiopathic" (meaning "we don't have a clue as to what the cause is...") or "primary," gives us the satisfaction of labeling--satisfaction that the ills are now neatly categorized, ready to be boxed and shipped out for treatment. To categorize is simply a way to feel in control.

The problem is that once we diagnose, it's easy to stop thinking, stop observing. We stop looking for other answers, other possibilities and connections. The pressure is off; the diagnosis is there. But are we really under control...? With a diagnosis, the physician has a ticket to enter the medical superhighway with its trailer-loads of information, and thousands of other physicians and researchers traveling in the same direction. The superhighway feels safe, it's familiar and well marked; but there's lots of country that it passes right by.

I'm not saying we shouldn't diagnose. But there are shortcomings in our way of doing it. Other healing practices approach the analysis of symptoms quite differently. In traditional acupuncture, as in my own chiropractic practice, listening to the patient is extremely important. The acupuncturist relies on the patient's description of the problem that brought them in and on observing the patient--noticing how they move, how they hold themselves, the feel of their skin, their smell, their affect, their energy, even the tone of their voice. As the patient describes symptoms, they are encouraged to mention anything that strikes them as characteristic of their normal pattern, and everything they associate with their current problem.

I didn't feel we were ready to label my loss of bone density with a diagnosis yet. I had no idea what the cause of the bone loss was, but I did know that there was an imbalance spurred by something... somewhere. One of the first tests the Dr. from UConn and I had ordered was the bone resorption marker N-telopeptide (NTX) and the results had come back abnormally high. A reading of 123 nmol/BCE/mmol creatinine with a reference range of 4 to 64* showed that I was loosing bone rapidly. What could cause the osteoclasts, the cells that break down bone, to be so aggressive? Was it diet, stress, over-training, or was it hormonal? Was it toxicity from chemicals or heavy metals? After all, the bone biopsy had shown that strange "zebra striping" appearance that the pathologist had said looked similar to cases of heavy metal toxicity that he had observed before. My biopsy slides hadn't stained positive for iron, and blood and hair analysis' didn't show heavy metals...but tests can be wrong. Or, could it be that my kidneys or my intestinal tract were not functioning properly. I felt TOTALLY fine...I did not FEEL sick. How could my bones be crumbling? How could they be loosing so much density so rapidly and I not feel ANYTHING? Had my genetic makeup just written it that way?

The possibilities seemed endless. The endocrinologists wanted to stick my symptoms in the box labeled "idiopathic" with alendronate as the treatment of choice. But I didn't understand. What did they expect me to do?...take a bisphosphonate drug for the next 45 years? I was only 46 years old, and I might live to be 90 (give or take a few). That just seemed ludicrous!

I wanted a doctor who could look at me as a whole, look at both my inner and outer self as one, not just a case of low bone density. It seemed that an acupuncturist trained in the Chinese healing tradition would be a good person to start with. When I asked the acupuncturist what she thought after her initial examination, she said that of the five elements that make up the body--water, wood, fire, earth, and metal--my constitution type was "fire" and that my smell was that of being "scorched." I wasn't quite sure what to make of this information, I didn't know if it was significant in terms of my efforts to track down the cause of my disease and to make a treatment plan, but I added this information to what I had already found out. At this point in the process, it was just another clue as to how the different systems of my body were working...or, more accurately, not working.


          "The whole may actually organize the parts."
                                                                  David Bohm


* With almost 20 years now of observing the bone resorption markers of hundreds of patients, it is my opinion that this reference range is totally useless. A better reference range for NTX (urine) would be 20 to 45. If a person's NTX gets below 20, osteoclastic activity is probably too low to keep bone quality in the healthy range with minimal microfracture accumulation. If NTX gets over 45 then we run the risk of excess bone resorption and a net loss of bone density.

Sunday, October 29, 2017

How Much Calcium Should I Take?

Ninety-nine percent of calcium in the body (and that is 3 pounds of the stuff!) is in our bones. And since bone is in a constant state of being torn down and then being built back (remodeling), let's just say it goes without saying that we NEED adequate calcium for good health. Calcium is important not just for our bones but also for a whole host of other essential functions. Without calcium there would be no nerve transmission, muscle contraction, cell signaling, blood clotting, constriction and relaxation of blood vessels, or secretion of hormones. (1) Studies have consistently found that higher calcium intakes reduce the risk of hypertension, obesity, and type 2 diabetes. (2,3,4). In a 2015 study from the National Osteoporosis Foundation, Weaver, et al. found a "significant decrease in fractures with calcium and vitamin D supplements." (5)

OsteoSustain: three tablets provide 500 mg calcium

The Recommended Dietary Allowance (RDA) for calcium as endorsed by the Institute of Medicine (IOM) is 1,000 to 1,200 mg daily for adults and not to exceed 2,000 mg. (6) People should strive to meet these calcium levels using food sources to the greatest extent possible. A healthful, well-balanced diet should include dairy (especially yogurt and kefir...preferably goat), dark leafy greens, and other calcium sources like sardines, almonds and beans.

Unfortunately, some people are sensitive or allergic to dairy. In addition, although many physicians recommend dairy as a calcium source, high dairy intake may come with other undesirable effects. Besides grave concerns over the dairy industries use of rBGH (growth hormones), milk is acidifying to the body (and not necessarily good for bones as the dairy industry would like you to believe) and casein, the major protein found in milk, has neoplastic (cancer) potential. Also, D-galactose (from the lactose sugar in milk) has been shown to increase inflammation, contribute to neuro-degeneration and reduced immune function. To this point, Michaelsson, et al. observed a link between high milk intake (3 or more glasses per day) and higher rate of both mortality and fracture in women, and a higher rate of mortality in men. "There were positive associations between milk intake and concentrations of markers for oxidative stress and inflammation." The authors concluded, "A higher consumption of milk in women and men is not accompanied by a lower risk of fracture and instead may be associated with a higher rate of death." (7)

We recommend 500 to 800 mg/day of supplemental calcium depending upon your diet. If you have severe bone loss and are sensitive to dairy then a slightly higher dose per day may be indicated.


1) Linus Pauling Institute. Calcium dietary supplemental fact sheet. National Institutes of Health Office of Dietary Supplements website: http://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/. Updated November 21, 2013.


2) Alender, P.S., et al. 1996. Dietary calcium and blood pressure: a meta-analysis of randomized clinical trials. Ann Intern Med 124:825-31.


3) Bucher, H.C., et al. 1996. Effects of dietary calcium supplementation on blood pressure. A meta-analysis of randomized controlled trials. JAMA 275:1016-22.


4) Villegas, R., et al. 2009. Dietary calcium and magnesium intakes and the risk of type 2 diabetes: the Shanghai Women's Health Study. Am J Clin Nutr 89:1059-67.


5)Weaver, C.M., et al. 2016. Calcium plus vitamin D supplementation and risk of fractures: an updated meta-analysis from the National Osteoporosis Foundation. Osteoporo Int 27:367-376. 

6) Institute of Medicine. 2011. Dietary Reference Intakes for Calcium and Vitamin D. Washington, DC: The National Academies Press.

7) Michaelsson, K., et al. 2014. Milk intake and risk of mortality and fractures in women and men: cohort studies. BMJ 349:g6015. 





Monday, October 16, 2017

DX Severe Osteoporosis: Part VI -- Drug Therapy, Fixing Without Healing



This is Part VI of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health. 



"In this country we are brought up to underestimate the power of our own capacity to heal, to be ignorant of how to support and strengthen our ability to recover from illness, and to rely on external substances to counter disease, discomfort, and inadequacies of all kinds."                                 Crucibles of Will



The first endocrinologist had given me two options: either do nothing until I began to self-destruct, or immediately start taking two drugs--thiazide, a diuretic that makes you urinate more but lose less calcium, and alendronate (Fosamax), a drug that stops bone loss, boosts your density, and lowers the risk of fracture. My new doctor from UConn disagreed about the thiazide, because while it may reduce calcium in the urine it can also inhibit calcium absorption from the gut.* The alendronate though, he was in total agreement with, and said that I should start it immediately.


Medications can be incredibly dramatic and effective gifts. But most drugs don't fix things, they just interfere with bodily systems in such a way as to get a desired therapeutic effect--like taking drugs to improve one's performance in sport. Gold medals are often won with the help of chemicals because for some athletes it is simply the color at the end of the chain that is important, not how you get it. The problem with drugs, besides being illegal in sport, is that the athlete never gets to find out who they really are, what they alone can really do. They are robbed of that special feeling of truly experiencing what it is like to give their whole self to a silence, to the unknown territory of their own potential--to an emptiness into which they bring the essence of who they are and offer it to the world. 


I have always thought that it was important to pay attention to the underlying truth of any situation, and the natural integrity of other beings and of ourselves. That's one of the reasons I went into chiropractic, a drugless profession, which tries to discover the whole truth behind a person's injury or illness, and which respects the integrity of the individual's body, including that body's power to heal. Drugs certainly have their place in health care, but I feel that we should try to help people as naturally and wholly as possible--it seems like less of an insult upon the body--more pure and in harmony with the person's whole being. Growing up, I could never understand how anyone could take a drug to make them something that they were not. So being told to take alendronate before we'd even tried natural alternatives was not only difficult for me to accept as the only answer to my health problem, but my resistance also had a practical side. Once a drug therapy is initiated there is no way of assessing the effects of a natural treatment plan. 


Using bone density as an indicator of success or failure of a treatment regime for osteoporosis is impractical because density builds so slowly. But using specific lab tests to see changes in the body's physiology, changes that would be beneficial in improving bone density, is more practical. If I could see improvement in lab values as a result of natural therapy, then I would know that my biochemical patterns were shifting in a good way, becoming more balanced. Starting the use of alendronate before more information was gathered would eliminate this important guide. 


Alendronate is in the family of drugs called bisphosphonates that work by killing off (or at least making them really sick) all the osteoclasts, the cells that eat old, worn-out, and unstable bone. Normally, after the osteoclasts have resorbed the old bone, other cells, called osteoblasts, come along behind and make new, strong bone, in its place. This remodeling process is what keeps our bones healthy and resilient, and the interaction or coupling between the two cell types is a balancing act that needs to be maintained. It is precisely this coupling that the bisphosphonates disrupt. 

I felt trapped...I knew very little about osteoporosis and even less about drugs. I was concerned, fearful actually, of breaking more bones and I didn't want to fall into what looked like a big dark hole of the unknown. I was 46 years old...what were these doctors asking me to do?...take drugs for my skeleton for the rest of my life?...another 45 to 50 years?! It didn't make sense.

All my life I had tried to respect my body, both to heal and to achieve in athletic competitions, with no help from synthetic chemicals of any kind. The only substance I ever used was what came naturally inside me. Now I was being asked to participate with the doctors in doing something to my body that destroyed part of its natural functioning. If I did this, I felt I would be betraying the body I had always tried hard to respect and improve. 


The problem with bisphosphonates, and the newer drug Prolia, is that they shut down bone resorption but do nothing to encourage osteoblasts to form bone. In fact, it's the osteoclasts that normally signal the osteoblasts to make new bone. With the osteoclasts gone from the scene, new bone just doesn't get made. The overall effect is a decrease in bone remodeling with minimal increase in bone density. The reason bisphosphonates are able to reduce fractures is not from their paltry increase in the density of bone (which, is secondary in nature...in other words it isn't primary new bone, just a secondary sprinkling of minerals onto the old weak scaffolding), but from a reduction in the number of small cuts of gouged out bone that the osteoclasts ordinarily make. Like the perforations that make it easy to tear pages from a notepad, these spots are vulnerable to fracture, even though they are a necessary part of remodeling. Where there is no remodeling, there are no temporary weak spots, and no focal areas where a little crack can get started. In normal bone these small cuts pose no problem, but if the overall density and strength of bone is low, these perforations become the ideal sites for catastrophic fractures to begin. 

Older people are typically more sedentary and place less stress on their skeleton. Leaving the old bone in place by stopping remodeling, seems to work well in reducing the risk of fracture, even though the actual quality of the patient's bone becomes arguably worse. How many years can a person go without remodeling before that old bone becomes so old that it's more fragile than new bone would be with remodeling sites? That's a big question and nobody knows the answer. For an 80-year-old it's probably a reasonable risk. For a 46-year-old, it's a question that hadn't been tested much, and I wasn't sure I wanted to volunteer to be a guinea pig. 

The UConn doctor was concerned that I was going to start getting some major fractures. Besides the two ribs from skiing and the new compression fracture from lifting the couch, I snapped two more ribs just leaning up against a horse to pick out its hooves...heard them snap, as easily as twigs on a dead pine. The literature was daunting; it referred to bone loss such as mine as irreversible. That's one really ugly word, irreversible. It's like saying some runner is
My biopsy with disconnected trabeculae
unbeatable...so there's no point in even trying...no point in even entering the race. The bone loss is considered irreversible because once the trabeculae, the small structural supports that give strength to inner bone are resorbed and become disconnected from surrounding bone, there is no way for new ones to reform. And when the new ones can't form, and old ones don't repair, the density just keeps going down and the risk of fracture keeps going up.


Irreversible...unbeatable...

But everyone can be beaten; maybe not by me, but by someone. I finished back in the pack in a lot more races than I ever won, but even when it looks like you can't win, you don't know till you put yourself out there and run till you drop. It is sure a lot better to get on the starting line even if you only finish second or third, or last, than it is to just sit and think about it. With osteoporosis, it was even hard to tell who was toeing the line, what I was racing against--but I knew I wasn't going to let this "irreversible" hype make me shy away from trying. I wanted to heal my body, not just take some calcium and hope for the best, and not just take some drugs that killed off some of my cells, interfered with my body's natural processes, and made my bones old. 

I knew no one was going to be committed to this program except me. But I was ready to give it everything I had. It wasn't long before I started ordering a lot of my own lab tests and researching osteoporosis using every source I could find.

One of the first tests the doctor from UConn had ordered was N-telopeptide (NTX), a bone resorption marker that measures how much bone collagen is in your urine. When the osteoclasts tear down old microfractured bone, the shards of bone collagen go into the blood and is then flushed out of the body through the urine. If the lab results for NTX come back elevated, it means the osteoclastic activity is excessive and you are loosing bone rapidly. Rapid bone loss is a major risk factor for fracture and the higher the NTX the greater the risk of breaking something. In fact, if you take two people, both the same age, same build, same everything...and they have the same bone density...the one with the higher NTX will have a greater risk of fracture. 

My NTX test result was 123 nmol BCE/mmol creatinine. (Reference range: 4 - 64 nmol BCE/mmol creatinine)  Uh-oh!     



              "Dont' give up. It is still your turn to be in this world."
                                                                   Crucibles of Will


*  Taking a thiazide diuretic didn't seem like a good idea even way back then when I didn't know much about osteoporosis. Now, with about seventeen years of experience with this disease and working with patients with bone loss for at least ten, using thiazides to limit urine calcium loss seems like an even a worse idea. Thiazides interfere with trace mineral absorption, especially magnesium and zinc. Potassium depletion is very common with thiazides and can cause heart arrhythmias and glucose metabolism problems...not something you would want to have, especially if you are running marathons and competing in Ironman triathlons. Simply adding more vegetables to a person's diet and having them supplement with boron, potassium and vitamin K-2 MK-4 almost always lowers urine calcium losses. A much safer approach.



Friday, October 13, 2017

Supplemental Calcium for the Prevention and Treatment of Osteoporosis: New Guidelines by the EMAS


Eye opening stats:
-  Approximately 50% of women and 20% of men will become osteoporotic and suffer some type of fracture within their lifetime.
-  Spine and hip fractures can be debilitating, life changing events leading to long term pain and rehabilitation.
-  Twenty-eight percent of women and thirty-seven percent of men who sustain a hip fracture die within a year.

What can be done?:
These abysmal numbers DON'T have to be that way! Osteoporosis, for the most part, IS preventable. We do NOT have to see such large numbers of fracture rates if we could increase awareness and focus on prevention. Leading a healthy lifestyle is extremely important for reducing osteoporosis risk. This includes good nutrition, maintaining regular physical activity, and not engaging in destructive alcohol, tobacco and/or drug use. Along with eating a healthy diet high in fruits and vegetables and adequate protein, sufficient calcium intake is extremely important for bone health.

But what if a person already has osteoporosis and they are 60, 70 or 80 years old? Is there no hope for them? Is prevention the only thing we can do? NO! In fact I just spoke with an very nice 78-year-old woman tonight who has sustained multiple fractures of her spine and a hip fracture. She was distraught that there might not be anything that could be done for her...that she would simply have to live in fear of more fractures and continued pain. I have been working with patients with osteoporosis for almost 20 years now and have seen other patients with similar scores and in similar situations. And I know for a fact that there IS a lot that can be done to help. That there IS hope and PLENTY of it. But we can't be passive. We need to attack situations like hers from ALL directions. But improvement CAN be had...slow and steady, like putting
At 17,500 feet on Mt K. "Just Keep Going"...and you will get there.
one foot in front of the other. But it will happen. We just need to get up EVERY day and do things to improve. Slowly, slowly...just keep grinding away...but yes, improvement will come. Not to get too off track here but I think this is why I so love challenges like competing in Ironman triathlons or running up Mt. Washington, or Mt. Kilimanjaro. These goals are long and arduous, and rewards come from "just keeping on going".

There are lots of pieces to the complex puzzle of osteoporosis. Mineral intake is just one of those pieces. I must admit that I rarely write about supplemental calcium but a newly released clinical guide for the prevention of postmenopausal osteoporosis by the European Menopause and Andropause Society (EMAS) prompted this blog.

We all know that calcium IS necessary for strong bones but recent epidemiological studies linking excess calcium intake with "possible" cardiovascular risk has confused the waters. Many patients and doctors alike are questioning if supplemental calcium is safe and indeed if it is necessary at all. In response to these questions, the EMAS released new, updated guidelines. The following is a summary of the publication's most important points:


Insufficient calcium intake
   increases fracture risk AND an
   adequate daily intake is
   important for preventing 
   osteoporosis.

-  An intake of 700 to 1200 mg of
    calcium every day is important.

-  When possible, dietary calcium
    should be the preferred choice
    over supplemental calcium.

-  If dietary calcium intake is
    insufficient, supplemental
     intake is recommended.

-  Data from the National Health and
    Nutrition Examination Survey
    (NHANES) database shows that
     less than one-third of women 
    consumes enough calcium from
    their diet.

-  Excess intake of calcium does not
    help to reduce fracture risk.

There is no conclusive evidence
    that excess calcium intake causes
    harm.  [It is our opinion at OsteoNaturals that large doses of calcium (over 500 mg)
    should not be taken at one sitting, and that total daily supplemental intake be limited
    to 600 to 1,000 mg over the course of the day (depending on how much calcium is
    obtained from the diet).]

There is no doubt, CALCIUM is VERY IMPORTANT for skeletal health and not just for the prevention of osteoporosis but also for its treatment. The problem with relying on dietary calcium is that absorption of calcium from food does not exceed 35%. For this reason alone, calcium supplementation is a good idea. Adequate calcium intake is important, not just when we reach age 50, and not just when we have been diagnosed with osteopenia or osteoporosis...but when we are young and healthy! It is difficult to obtain sufficient calcium from diet alone, so no matter how you cut it, calcium supplementation is the best way to ensure sufficient intake.

Many patients do not adhere to calcium recommendations by their doctors because supplements are often poorly tolerated. Inexpensive drugstore-brand calcium products are especially difficult to absorb. Constipation, abdominal cramping and bloating are common side effects of calcium supplements. The reason for this is that most of these products contain cheap calcium sources such as calcium carbonate, dolomite, and/or oyster shell calcium. Not only are these forms of calcium not well tolerated but their absorption is low.

Take home message...check labels before purchasing calcium supplements...eat calcium-rich foods...and take quality supplemental calcium. Your bones will be healthier and stronger for it.


Cano, A., et al. Calcium in the prevention of postmenopausal osteoporosis: EMAS clinical guide. Maturitas https://doi.org/j.maturitas.2017.10.004.







Monday, September 25, 2017

DX Severe Osteoporosis: Part V -- A Race of a New Kind




This is Part V of a multi-part essay about my own personal experience with osteoporosis. I will be taking you through the diagnostic and treatment phases of my care in hopes that it provides you a better understanding of osteoporosis in general, and pearls that you can use to better your own bone health. 


"Without struggle, without enduring pain, there can be no full awareness of one's being."
           Crucibles of Will



I had never lost my self-image as an athlete, even as I approached middle age. It's natural for most men in the prime of their life to think they are fairly invincible. I certainly did. My time as an Olympian and decades of competing in triathlons and road races erased any sense of mortality that I may have had. Osteoporosis--my bones dissolving from the core--just didn't fit.

The best thing that could ever happen to me was someone doubting my ability to do something. Ben (not his real name) a close relative of mine once said, "You won't ever make the Olympic Team." And there was another time when I wanted to get into horse racing and he said, "You won't even get a horse to the track, let alone win a race." His words would cut deep; they would linger in the pit of my gut, in the deep recesses of my bones. From that point on, you could try, but you couldn't stop me. I might not be the best in the Olympics and my horse might not have the legs of Secretariat, but I wasn't about to fail and I would just about die trying to succeed.

When I started searching for the causes of my osteoporosis I began to wonder if this trait of mine, my intensity, could have somehow contributed to the severity of the bone loss. Many serious health disorders are caused by multiple factors; life style and stress are certainly major contributors to disease. Whether from emotional or physical causes, stress stimulates a huge release of cortisol from the adrenal glands and it weighs heavy on the immune system. Just a cursory internet search into the causes of bone loss brings up the damaging effects of excess cortisol, the stress hormone, and the involvement of the immune system in bone remodeling.

Many different aspects of who you are and how you live either contribute to health, or lessen its hold. The daily patterns of ones life as it is seen over the span of years can often shed light on who we are...who we have become. Since childhood the dominant pattern for me--and, coincidentally, the cause of why I had to go seek the help of an orthopedist for my hip pain when this whole mess started--was that of my athleticism. I was a hard grinding athlete who believed that it wasn't just the quality of the effort that mattered but it was the quantity of miles that would make me the best. With this erroneous training method, I racked up way to many miles and was constantly in a state of over-training. A ten-mile run usually wasn't good enough...it had to be twenty. And a 75 mile training session on my bike probably wouldn't do when thoughts of my competitors somehow getting an advantage over me during the night as I wasted valuable time sleeping. No, that just wouldn't be enough. I HAD to go 110 miles instead. Usually, this was with no food and minimal fluid and electrolyte replacement. That is how I trained and lived, for decades. It wasn't that I was trying to be foolish or irresponsible; it was just that back then (forty years ago) there weren't a lot of athletes putting in the miles I was and there had been minimal research and awareness into the detrimental effects of over-training and the need to refuel and allow the body to rest. Rest was just a dirty word to me. I was simply totally focused on training hard...not on taking note of the needs of my body. Recovery wasn't in my vocabulary. If I wasn't totally flogged by the end of a training day (and days off were non-existent) then my competitors might be getting a jump on me...or at least that is what I thought.

Throughout high school I ran on the cross-country and track teams, swam on two different swim teams, and rode hunters and jumpers at our farm and in horse shows. Three run workouts a day, even during the "off" season, were more the norm than the exception. A two- or three-hour run, making a bee-line to a distant hill on the horizon, was my fun for an afternoon. Eating, replenishing my bones, was not on my radar. 

Each mile I ran felt like it fueled some magical fire that was deep within me. It was as if my body was
a furnace built to carry this fire and that my earthly life was a burning. I didn't really see my body as a furnace that sometimes needed repairs and maintenance, I only looked forward to the burning. I only knew that the harder and longer I ran the hotter that fire seemed to get until an alchemy of sorts would take place. With the intensity of each run I became a crucible that got hotter and hotter until an amalgamation of all the forces within me and all the natural forces that surrounded me, came together, as one. I knew only one thing as I ran, that the intensity by which I ran nurtured that small burning coal that was in me. A coal that we all have within us, that we are all born with, and which will take us where ever we want to go. When I ran, ran hard, I would blow those coals into flame...into what I thought would be an inextinguishable fire.

Now, it looked like I might have been wrong about the inextinguishableness of that fire. Now I was at the starting line of a new race, one to figure out why I had osteoporosis, and it was a race against time. Sooner or later things were going to start crumbling, and I needed to find a way not only to stop the disintegration but to reverse the damage before the infrastructure started breaking down. And there were bigger threats. Early osteoporosis has a high correlation with other diseases such as diabetes, cancer, heart disease, and Alzheimer's. Once you're caught in an avalanche, once cramps seize up your muscles during a race, once a fire starts dwindling...it's usually all over. The stage was being set in my body; it was easy to see what would happen if I couldn't change the course it was on.
With a T score of -4.3 my spine looked worse than a 100-year old's, but I was determined to put out this metabolic fire that was consuming my bones, and find a way to help them heal, if I could.

Bone densitometry is the gold standard for defining bone loss and determining fracture risk. If your density is low, you are at a greater risk for breaking a bone. When really low, like -4.3, it doesn't take much trauma to break something. A T score of -1.0 or better is normal. Between -1.1 and -2.4 is osteopenia and -2.5 or worse is considered osteoporosis. Anything below -3.5 is considered severe osteoporosis. At -4.3 and as a 46-year-old, I knew I was in for a rough ride.

The next few months were, indeed, bumpy. I had difficulty finding ways to educate myself in depth about the disease, and about all the bodily processes skeletal health, or lack there of, seemed to be involved in. I also had to identify the lab tests that would help lead me to the cause of my bone loss and to monitor progress. Then there was the treatment plan, one I felt would have a good chance of success because it would be tailored, individualized. A plan based on healing my whole body, not one relying only on drugs that built up bone density while ignoring or compromising overall health. My plan would be comprehensive, fine-tuned, based on how my particular body works, paying attention to its underlying functional patterns. I wanted to get this ALL figured out before I really started breaking things...but that didn't happen.

The Medical Scene:

After the two rib fractures while cross-country skiing, I sustained a mild compression fracture of a mid thoracic vertebra. In retrospect (isn't that always the way it is) I guess I shouldn't have been lifting that couch. In a medically inquisitive way of thinking, it was an "interesting" experience. It "felt" like a "pfffst"...like air rushing out of a blown tire when the vertebra broke. From a personal way of thinking--it wasn't actually interesting at all--just painful and distressing. When I told the endocrinologist about the fracture he wanted to see me right away. I didn't know why. As a chiropractic physician who has seen lots of compression fractures in patients over the years, I knew there wasn't much a medical doctor could do to help. But I went in to see him anyhow.

Health care should be a little less like processing cattle and more of an investigation of what is happening to real people with real hearts and real feelings. You have probably sensed the same, especially at the beginning of each doctor's visit. Each appointment always begins with allegorical weigh-in and measure. As if they are saying, "Yes, you are NOW at the doctor's office."

Being a doctor, the medical scene was completely familiar to me. (Although I don't weigh and measure patients at every visit unless it is warranted.) At the same time, the assumption was that now I was the patient and I would go along passively with whatever my doctor recommended. In general, this is the expectation of what patients should do, and it works out well much of the time. Most patients either don't actively engage in their own health are, or they just ask a few questions and look up some articles on the Internet. The medical jungle is daunting to the lay person. The amount of information available and the technical language it's encoded in shuts down just about any attempt to engage with it. For most people, it is hard to explore this territory and stay oriented. Amidst the confusion and complexity, it is easier to get lost than to stay on the trail. But I had a major jump on the game. I didn't know much about osteoporosis, but I could speak the language.

The endocrinologist that I had found at UConn seemed more like a coach than a guarded, emotionless physician. Of course he still had his nurses weigh and measure me at each visit--we couldn't do without that--but from the beginning he let me know he was on my bench. He was direct and told me he had never seen anyone with the extreme low bone density that I had who did not have multiple fractures. He never seemed to be rushed and would always take time to listen to my thoughts and concerns. Best of all, he didn't have those invisible blinkers strapped to the side of his head. He was willing to consider things from all angles, and to help me take this to any level of investigation that I wanted. Now with this compression fracture, I realized that he wanted to see me because he wanted to reassure me that we would find the underlying cause of this mystery and that I wasn't alone in this mess. He also explained the surgical procedures, vertebroplasty and kyphoplasty.

Once a person has sustained one compression fracture, the chances of them sustaining another within a year increases 4- to 6-fold! This phenomena is referred to as "vertebral fracture cascade" and he wanted to avoid this at all costs. Once several vertebra collapse a person's posture becomes kyphotic, bent forward, and this can eventually compromise heart and lung function when the kyphosis becomes severe.

Compression fractures of the spine can result from major trauma such as falling backwards onto the buttocks, or from minor traumas such as bending, lifting, coughing, or twisting. When bone is EXTREMELY fragile, fractures can result from simply walking around or, as with the second compression fracture I sustained, bending forward to pick up a stick when running. When the spine structure is severely weakened, it doesn't take much strain at all for the vertebrae to simply collapse.

Both of my compression fractures gave me a fair amount of pain for about a year. But it is not unusual (nearly 50%) for vertebral compression fractures to cause minimal or no pain and may go undetected. In fact, many of these fractures are discovered as "secondary findings" when radiological procedures are being performed for other medical reasons. (Tip: if you have had radiographs taken and read at a medical facility, it is a VERY good idea to have your chiropractor double check them.)

So how do you know if you have sustained a vertebral compression fracture? Typically your chiropractor or medical physician will be able to find a localized area of tenderness when they are examining your spine. He or she may also notice an increased kyphotic or forward angulation in your spine if there is a fracture in the thoracic area. Thoracic and lumbar spine fractures are the most common areas of the spine to sustain compression fractures although they can occur in the cervical region also. If your doctor suspects a fracture, x-rays will be ordered. A bone scan, CT (computed tomography), and/or MRI (magnetic resonance imaging) may also be indicated to determine if the fracture has occurred recently or if it is old and occurred months or years ago. These tests can also help your doctor evaluate any neurological involvement and also to rule out any suspicion of cancer.

The endocrinologist explained to me that if the compression fracture was severe enough they could inject cement directly into the vertebral body to reduce the pain and stabilize the fracture, a procedure called a vertebroplasty, or use a balloon to expand the fracture prior to injecting the cement. This second procedure, a kyphoplasty, attempts to bring the collapsed vertebra back to its original size. After assessing the fracture, he determined that it was not in need of either procedure. (Whew!)

At that time, 18 years ago, these surgical procedures were becoming a common treatment for compression fractures. But more recently, they have come under considerable scrutiny, not only due to the significant risk of adverse effects such as bleeding, infection, allergic reactions, and leakage of bone cement into the surrounding tissues, but also regarding questions concerning their long-term benefit. In fact, many believe that these procedures may increase the risk of the fracture cascade by placing undue mechanical stress on adjacent vertebrae.

In 2010, the American Academy of Orthopaedic Surgeons actually recommended against using vertebroplasty and only gave a weak recommendation for kyphoplasty.(1) In 2013, a study by Martinez-Ferrer et al.(2) published in the Journal of Bone and Mineral Research showed that there was a 30% chance of sustaining another compression fracture after a vertebroplasty. They also found that leakage of cement into the disk beneath the vertebra being repaired contributed up to a six-fold increased risk for developing a new vertebral fracture. When hard cement leaks into the disk this places increased mechanical pressure on the vertebra below. The authors state that other comparative studies indicate a similar problem with kyphoplasty.

As a chiropractor, I wasn't too keen on surgical procedures or drugs. Certainly in the case of the vertebroplasty or kyphoplasty, these would not have been my first choice even if they had been recommended by the endocrinologist. Chiropractors as a general rule are dedicated to the goal of genuine healing. We are not satisfied with eliminating symptoms by suppressing them or by short-circuiting the body's patterns of functioning. Chiropractors support the body's innate ability to heal, and feel that drugs and surgery should be used only as a last resort. Sometimes these interventions are a necessary part of treatment, but even then, there is a lot that can be done to strengthen the body through conservative means. In my case, I wanted to try to find the underlying causes of my disease and to address them. I wanted to give my body the best possible chance to heal itself. Most of the other doctors I saw had different ideas so I always had to reel them back in and get them headed in the right direction...the direction I CHOSE for treatment.

Genetically speaking we humans were only designed to live for thirty-five years or so. After that, after we have procreated, we really didn't have much reason to live...genetically speaking that is. Bone density follows this script and only actively increases up to about age 35; after that bone is still actively replaced, but only maintains the density it achieved earlier. Eventually this density starts to decline, and my density had been declining for years--possibly decades. In terms of nature's plan for my bones, there was nowhere to go but down. I, on the other hand, had other plans in mind.

               "This is why I run: for the sake of the fire; for the burning."


1) The Treatment of Symptomatic Osteoporotic Spinal Compression Fractures ̴ Guideline and Evidence Report. Adopted by the American Academy of Orthopaedic Surgeons Board of Directors, September 24, 2010. http://www.aaos.org/research/guideline.pdf and http://www.aaos.org/news/aaosnow/oct10/cover1.asp

2) Martinez-Ferrer, A. et al. 2013. Risk factors for the development of vertebral fractures after percutaneous vertebroplasty. Journal of Bone and Mineral Research 28(8):1821-1829.

Tuesday, September 5, 2017

DX Severe Osteoporosis: Part IV -- Zebras



The Will

"Sometimes you don't know how deep inside you can go until you put yourself in a place where there is nothing between you and the mirror in front of you to blur the image; a mirror that shows not just your form, but your capacity--what you are made of. To give off light, along with passion you also need will. Will carries you through hard times and loneliness when no one else believes you can accomplish what you have set out to do. The will focuses the flare of passion, it is your navigator, the director of our life force, the hands that tend your flowering. Like the skeleton, will gives you form. It doesn't just support your movements, nor is it just a reflection of your musclular capabilities, but your will defines the absolute raw intensity of your nature, and by this you can bring into being all that lies within you as potential."
Crucibles of Will


This is Part IV of a multi-part essay telling you about my own personal experience with osteoporosis.


Zebras

After receiving "the diagnosis" I realized I had been getting signals for some time that something was wrong. My hands and lower back ached constantly; I had about as much energy as a dog in August; and felt cold all the time, as if it were perpetually January. My skin, especially on my chest and arms was incredibly sensitive and I hated being touched in these places. I was irritable and I guess I was depressed, although I would have denied it completely. Sharp noises or gentle pokes from my children during play caused a sickening wave of adrenaline response to course through me. The two fractured ribs I sustained while training for the American Berkebeiner, a 50-kilometer cross-country ski race in Wisconsin, now made more sense. I had just been pulling hard on the ski poles going up the hills...no falls, no direct trauma; just intense muscular shear forces on the now obviously structurally unsound bone.

The newly discovered frailty also began to take its toll on my professional life as a chiropractor. Every time I entered a treatment room I felt as if I were taking on a sumo wrestler...heaven forbid if the patient was 6 feet plus and weighed over 200 pounds. Chiropractic treatment in general is very precise and gentle, but it does require some motions that impart more physical stress to the doctor than they do to the patient. Even when treating normal-sized adults, adjusting them would send shock vibrations rattling through me. It was as if my resilience and strength had faded away, and it wasn't the running shoe that was broken down in the morning, it was me.

Lab tests are an important source of information, not only about what is going on inside a body, but also about what isn't going on. Over the next five years laboratory testing would play a huge part in my life as I tried desperately to find out not only why I had osteoporosis but how to fix it.  Severe osteoporosis (-4.3 T score on bone density examination) in a relatively young male is rare. For several weeks after the initial diagnosis the endocrinologist thought there may be a more serious disease process lurking and that it was the source of the unusually severe bone theft from my body. The list of diseases that can cause extensive bone loss is very long. From the common condition where one of the parathyroid glands becomes overactive (hyperparathyroidism), to the deadly bone-destroying multiple myeloma. We had to rule each of them out. Initial lab work helped eliminate most of the dreaded disorders. The only real clues we came up with were that my urine was rich in calcium and had large amounts of bone collagen in it, the result of active bone destruction--way too much of it.

There is an old saying, "When you hear hoof-beats, don't think zebras." In other words, if you hear hooves behind you, don't expect to see a zebra when you turn around...it will probably just be a horse. Dr. Theodore Woodward, a medical doctor in the 1940s, coined this phrase as a way of encouraging fellow doctors not to delay treatment by looking for rare, complex diseases at the beginning of the differential diagnostic process, because in all likelihood, the patient's symptoms are probably being caused by something simple and easy to treat. There is a lot of truth to this...although sometimes, there are zebras.

To rule out the systemic mastocytosis the doctors had to drill a hole through my bone and take out a core sample to look at under a microscope. As an added benefit to this procedure, it was also a good way to see how my bones were really holding together and to assess the quality of my bones. 

Normal bone on the left. My biopsy on the right.
During the two weeks before the biopsy, I took two short courses of oral tetracycline. This would be absorbed into my bones and used as markers for the lab to determine the pace at which my bone was being made. The bone tissue was taken from the right side of my pelvis. The surgeon from UConn Health Center first injected a local anesthesia into the area, made a small incision and then, with a hollow hand-drill called a trephine, began drilling through the bone. The trephine was shiny but still medieval-looking, and had a rudimentary handle on one end with large jagged teeth on the other. The doctor took her time twisting the trephine; I could feel the teeth as they passed through each layer of bone. She explained that it was easy to damage the sample; osteoporotic bone is fragile, especially the trabeculae--the lattice of three-dimensional structural beams sandwiched between the inner and outer cortex that give bone its ability to be light yet strong. Trabeculae are designed to withstand the forces of normal activity, like running, but not drilling. If she used too much force, the trabeculae would snap and the pathologist would not get a good picture of their integrity, their "connectivity."

I must admit, having a hole drilled through my pelvis was unnerving. I know it really wasn't a major procedure, patients have a lot worse things done to them. It didn't even hurt that much except for the injections of anesthesia through my abdomen to help numb the inner part of my pelvic bone. But the whole procedure just seemed crude. My response had nothing to do with the doctor; she was extremely sensitive, caring and competent. Maybe it was the sedative she gave me, but during the surgery I kept thinking about the ancient Indians of South and Central American, and how archeologists have discovered skulls with holes drilled into them. Holes that had healed around their edges, indicating that the people/patients had been alive when the procedures were performed. Although they were performed with the intention to heal, it had to have been excruciatingly painful--such an invasion, an assault upon those individuals. What was being done to me had been done to them long before--the drilling-- the same procedure of a person twisting a tool into the inner physical being of another.

The doctor finally broke through the inner bone cortex to the softer tissues underneath, and pulled out a 3/4 inch, pencil-thick, piece of bone. She placed it carefully into a small bottle of chemical solution and handed it to me. I had never seen a piece of my body like that before. It was all so odd to me.

I had been told that the aftereffects would not be any worse than if I had bumped my hip into a kitchen counter. That description might have been accurate, but only if I had been running twenty m.p.h. through my kitchen when I hit it. For the next three days I dragged my leg around like a lead weight; I couldn't even think about running for two weeks.

Trabeculae in bone should be plentiful, robust, and intact. What we found when we looked at the biopsy slides was that mine were few in number, thin, and disconnected. In a crime lab with just bone to look at, a technician would have pinned me as a 100-year-old malnourished female. Rapid loss of bone does that to trabeculae. When osteoclasts become aggressive, devouring excess bone and leaving large deep gouges in the bone surface, even normal functioning osteoblasts are incapable of fully filling in the holes with new bone. The result is pitting in the cortex of the bone and trabeculae that get thinner and thinner until they separate from adjacent bone.

Looking at my bone biopsy under the microscope, we could see a lot of the trabeculae just hanging there like stalactites and stalagmites giving no strength at all to the bone. It was similar to the beech trees in New England that become weakened by a fungal pathogen. Hidden from view just under the bark, the beech's inner structural core is silently being eaten away. To the untrained eye, the trees appear healthy enough, beautiful majestic giants in the forest, until a small wind topples them over...the result of "beech snap." Osteoporosis is similar. Often silent, often afflicting healthy appearing individuals, but underneath hidden from view are overzealous osteoclasts eating away, like a fungus, at the structural core.

As with the wood in "beech snap," trabeculae, in osteoporotic bone, become incapable of resisting the stresses of everyday life. Hips snap and the spine crumbles, and like the broken beech that can't regenerate, the trabeculae can never re-attach. The manner by which bone forms does not allow for it to develop where there is nothing but empty space. This is where all those articles I had read about severe bone loss being "irreversible," began to make sense. But I did not want to accept that. I wanted to find a way around this seemingly impossible physiological impasse. There had to be a way, not just to gain back density by using a drug, but to gain back both the bone density and the structural integrity of newly remodeled bone.

The biopsy ruled out mastocytosis but actually brought up more questions than it did answers.
Zebra striping. Intermittent bone formation.
Besides having disconnected trabeculae, my bone had an odd appearance. The biopsy report called it "zebra striping," or intermittent bone deposition. There would be up to four layers in some areas, with new bone and then no mineralized bone, then bone, then no mineralized bone. It looked like the layers of different soils at an archeological dig. The endocrinologist estimated that the time-lapse between each stripe was days or weeks, not months. Neither the pathologist who read the biopsy nor my endocrinologist knew what to make of the queer stratification. They had seen this striping before on rare occasions with metal toxicity, but the biopsy had been stained for aluminum and iron and it came out negative. Lab testing of blood, urine, and hair for other heavy metals came up negative as well.

It was becoming clear to me that the only way to track down and destroy the beast that stole my structural strength was to immerse myself deep in the study of osteoporosis. I wasn't about to leave this solely in the hands of doctors who would drop me into a file drawer and leave me there for weeks and months at a time. I began to read everything I could about bone biology, and specifically, osteoporosis. I went to osteoporosis seminars and week-long conventions. I took courses on how to read bone density exams. I joined the American Society for Bone and Mineral Research, the International Bone and Mineral Society, and the International Society for Clinical Densitometry. I had dissected a lot of human cadavers in anatomy class at chiropractic school so I knew what it was like not only to study something intensely, but to pick through each and every part of a very complex puzzle. I wasn't just going to study this disease, I was going to rip it apart, piece by piece, clue by clue. Like a dog kicked into a corner, (s)he will come out fighting. I may have skipped a few beats when I first heard the words "severe osteoporosis" as my diagnosis, but my heart quickly rebounded, pounding like a competition-starved athlete ready to do battle. I was sure this beast wasn't much tougher than some of the big ugly guys I had competed against when I was vying for a spot on the USA Olympic Team. I might not win but I sure as hell would attack with everything I had, even down to the center of my physical being, down to my bones. Or at least what was left of them.

"When you go to the core of anything, you go to the heart of its reality, its truth, its real substance."



Saturday, September 2, 2017

Is Prolia the right choice to help reduce fracture risk ???

When faced with fractures from severe osteoporosis, taking a bone specific medication to gain bone density (and hopefully bone strength) can be warranted, at least in the short-term. Prolia (denosumab), or one of the four available bisphosphonate medications on the market, are typically the options given by medical doctors for treatment of osteoporosis. None of these drugs are great--they can all cause mild to severe adverse side effects and long-term use can lead to atypical femur fractures and osteonecrosis of the jaw (ONJ)--but in some severe cases, when fracture risk is extremely high, we just have no choice but to use a medication. More and more doctors are beginning to prescribe Prolia, and less so the bisphosphonates. The reason for this is that studies show Prolia to increase bone density more so than the bisphosphonates. But...there is a hitch. (There usually is when it comes to drugs.)

Prolia is a human monoclonal antibody that inhibits an immune protein called RANKL. (Dr. McCormick talks about RANKL in his book, The Whole-Body Approach to Osteoporosis.) RANKL stimulates osteoclast cells to
resorb (break down) bone. By limiting the body's ability to produce RANKL, Prolia is able to effectively reduce osteoclastic bone resorption and increase bone density. The problem is that RANKL is also needed for the immune system to work properly. So by limiting RANKL production we see immune related side-effects such as muscle and joint pain (inflammation), nausea, diarrhea, headache, skin irritation, skin blistering, fever/chills, dizziness, numbness, urinary tract infections, abdominal pain, elevated heart rate...etc....etc....

But side-effects may not be the worst thing about USING this drug...it may be from STOPPING this drug. In a review of the literature, the European Calcified Tissue Society (ECTS) found that when Prolia is discontinued there is "a rapid decrease of bone mineral density (BMD) and a steep increase in bone turnover markers (BTMs)". Case studies show "multiple vertebral fractures, after discontinuation of denosumab."

Analysis of the FREEDOM and FREEDOM Extension Trial suggests "the risk of multiple vertebral fractures may be increased when denosumab is stopped due to a rebound increase in bone resorption." "Clinicians and patients should be aware of this potential risk."

This rebound effect makes taking Prolia short-term not an option unless it is backed up by a minimum of 6 to 12 months of a bisphosphonate.

Tsondi, E. et al. 2017. Discontinuation of Denosumab therapy for osteoporosis: A systematic review and position statement by ECTS,
Bone Aug 5;106:11-17.

Wednesday, August 30, 2017

DX Severe Osteoporosis: Part III -- Looking to the "Whole" for Answers




"It is not by sending his awareness out beyond the natural world that the shaman makes contact with the purveyors of life and health, nor by journeying into his personal psyche; rather, it is by propelling his awareness laterally, outward into the depths of a landscape at once both sensuous and psychological, the living dream that we share with the soaring hawk, the spider, and the stone silently sprouting lichens on its coarse surface."


     David Abram, 

     author of The Spell of the Sensuous



This is Part III of a multi-part essay telling you about my own personal experience with osteoporosis.



Part III :  The "Whole"

I knew from the start that I wanted to be informed about, and involved in, every aspect of testing, diagnosis, and the development of a treatment plan for my osteoporosis. Anyone can choose to do this, if she or he is willing and able to put in the time and attention. It was somewhat easier for me because of my medical training but I still struggled and I knew it was important to get the expert help of specialists. The specialists were allies in unknown territory for me. I rounded up the best I could find. I put together my own team to go up against this disease that was my new adversary.


The fourth endocrinologist that I contacted (I found out later) was the "Godfather" of osteoporosis. A doctor world renown for his expertise in osteoporosis and who ended up being not just an amazing doctor to me but also my mentor. I also saw several additional orthopedists because I not only had osteoporosis but my hip pain persisted beyond the time when the micro-fractures should have healed.


While the specialists gave me useful information (especially the endocrinologist) it could be frustrating to try to communicate with them. The very focus that made them experts in their fields seemed to give them a kind of blindness. It was as if they could only see from one point of view, the view given them by their specialty. To me it made sense not to confine my vision to one viewpoint, but to consider my body as a whole. After having been active all my life, I was not used to being shut down physically. Now I had two chronic disorders at once, the hip pain and the bone loss. This got me thinking--could there be a connection between the two? Not that one was necessarily causing the other--the micro-fractures and osteoporosis, yes, but the persistent hip inflammation and severe bone loss?...well...could THEY be from the same underlying mechanism? Could these two entities be caused by the same "poison in the water"?


I put this question to the different specialists I was seeing: a new orthopedist and his in-residency assistant at Boston General Hospital, and also to the endocrinologist at UConn Center for Osteoporosis. But each of them just looked through the eyes of his own specialty. The two orthopedists thought only in terms of bones and joints, focusing totally on the hip inflammation. They ruled out arthritis and Lyme disease, and never once mentioned the word osteoporosis and certainly didn't consider the possibility that there could be a deeper connection between the two entities on the biochemical or body systems level. The endocrinologist thought only about hormonal and metabolic disease processes within the organs that can cause a loss of bone density. He never thought to look at the persistent inflammation in the hip for any clues that might help him find the reason for the osteoporosis.


Like race horses wearing blinkers, if it wasn't right in front of them, if it wasn't in their specialty, then it didn't exist. My suggestion of a possible underlying condition contributing both to the lingering inflammation in the hip and the systemic osteoporosis would have involved crossing lines between specialties. Their minds just could not do that. Modern Western medicine is so bound up in its own laws of associating particular symptoms with particular disease conditions and commonly associated causal factors, that physicians often resist considering any alternate possibilities of connection.


The problem with how the specialists looked at things seemed to be a case of hyper-focus. But when you are looking at your own predicament and trying to find answers, immediate answers, it goes beyond hyper-focus, it goes into desperation. Having that feeling of desperation and focusing too intensely in your effort to find an answer can, and usually does, interfere with your ability to see something that is right in front of you.


Caught in a crisis, desperate for solutions -- solutions now--
it is hard for the mind to let go of the sharp focus. We feel that that intensity of focus is the only way to solve the problem. But in truth, we need to widen our view. We need to stand back--decipher the significant reality that may be cluttered, camouflaged, distorted by dogma and our own hyper-reactive emotions, and take in the "whole" view. In my own practice as a chiropractic physician, I have seen that pushing to make a diagnosis too soon can lead to error. Simply holding the pieces of the puzzle for a few hours or days can help to make the connections between patients' symptoms and my examination findings become clearer. Forcing puzzle pieces together doesn't work. By holding single threads of information, such as the appearance of an x-ray or various results from the lab, and then allowing your focus to widen--to let connections between threads or dangling pieces become clearer--the connections will eventually evolve and become locking pieces to the puzzle. It is by gong back and forth between sharp focus--wide focus--sharp focus, that you allow the diagnosis to develop. It takes time and patience to let the pervasive pattern of energy that runs through each person's system help in connecting the pieces into a whole. All my experience told me that I needed to bring a different kind of vision to the problem of my osteoporosis than that one on which the specialists relied.


I began to see that the trail to recovery would be long. That those moments when I had stood with the two initial orthopedic surgeons looking at the dark x-ray of my hip, that I was standing at the beginning of a long trail through difficult terrain that might (and did) extend for years. Academically speaking, the trail was choked with a tangle of medical information that was hard to decipher. But even more difficult was the psychological challenge of this boulder strewn trail; one where I would stumble and curse through multiple fragility fractures--twelve over the next five years.  

...to be continued...


"The effects of any serious disease ripple throughout our bodies, throughout our lives--throughout everything we think of as the self."
Crucibles of Will





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