chronic illness

Beyond Calories In and Calories Out

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Since the early 20th century, calories have been equated to health and energy. The assumption is that calories, no matter their composition, equal energy, and energy equals health. Strictly speaking, this is correct. The body will take whatever it is given, and to the best of its ability, convert it into cellular energy or adenosine triphosphate (ATP). That process produces heat and heat is the unit of change underlying the concept of calories. Mathematically, a calorie or kilocalorie (kcal), the unit used in food science, represents the heat or energy required to raise the temperature of 1 kilogram (kg) of pure water to 1° Celsius. This equation is used to calculate the heat content of food and determine the amount of heat energy produced as the food passes through the body. Another simple metric called the basal metabolic (BMR) is used to calculate the energy one requires to survive. From these two metrics, we get the calories in/calories out framework that dominates conversations about health and disease.

According to this framework, if the two numbers balance, we should have sufficient energy to meet the demands of daily living. If we consume more calories than we burn then, we should have excess energy, which can be used to increase one’s activity level or be stored as potential energy for use in the future. In today’s sedentary environment, it is usually the latter. Conversely, if we consume fewer calories than necessary, decrements in energy and weight loss should follow. In either case, energy is simply a matter of physics. Heat energy is transferred from one source – the food, to another – the body, or from the body to the environment at large, as one uses the energy in daily living and it dissipates.

This is the framework that has guided the medical profession, the food industry, and countless weight loss gurus for generations. To that end, it is of little to no concern what these calories are comprised of and very little thought is given to the endogenous processes underlying the generation of heat or energy. This framework allows us to represent health and illness mathematically. It is simple, recognizable, and easily understood, and perhaps that is why we hold dearly to it but is it accurate? What if there is more to this story? What if energy is not just a matter of heat transfer and what if the content of the calorie matters as much or more than the calorie itself? To answer that question, we need to determine what type of energy the body needs to survive and how that energy is derived.

What is Energy?

If energy is not a matter of calories, at least not in the sense that is portrayed, what is it then? In the body, energy comes in the form of ATP molecules, produced primarily by the mitochondria. In broad terms, ATP is the result of a series of reactions that combine oxygen with components of metabolized foods. Part of this process takes place in the cell but most of it takes place in the cell’s power plants, the mitochondria.

If all is going well, derivatives of fat, protein, and carbohydrates, the macronutrients contained in food, are shuttled into the mitochondria, through what is called the tricarboxylic acid (TCA) cycle (also called the Krebs or citric acid cycles), combined with oxygen, and through a series of reactions, collectively called oxidative phosphorylation (OXPHOS), produce ATP. From the oxidation of one glucose molecule, we get around ~30-36 ATP molecules. From one fatty acid molecule, we get over 100 ATP molecules, and from the amino acids, we get either substrates for the synthesis of other proteins, more glucose to metabolize and feed into the mitochondria (amino acids can be converted into glucose via gluconeogenesis), or another compound called pyruvate that may also be used by the mitochondria to make fuel or converted into lactate.

When things are not going as well or when quick energy is needed for certain functions, a number of extra-mitochondrial pathways, are used to break down the various macronutrient components to provide energy. There are two key pathways here. One is called glycolysis and the other is called the pentose phosphate pathway (PPP), which connects glycolysis with the TCA and OXPHOS and performs a few other important tasks like providing substrates for DNA and RNA synthesis. The PPP nets 1 ATP molecule per molecule of glucose, while glycolysis nets about 2 ATP molecules per molecule of glucose. A third pathway, used primarily in quickly replicating immune cells and cancer cells, involves shuttling glutamine, an amino acid, through the side door of the mitochondria to produce ~24 units of ATP per unit of glutamine. Severely stressed neurons use this pathway as well.

Which pathway is used to produce ATP may alternate according to to need, cell type, fuel type, micronutrient, and/or oxygen availability. Some cells metabolize a good portion of their energy in the cytosol using glycolysis while others rely almost exclusively on the OXPHOS in the mitochondria. This flexibility allows cells to adapt rapidly to changing circumstances. If one macronutrient is not available, energy is derived from another. When a micronutrient (vitamin or mineral) is not available, the products are diverted through other pathways, and when there is limited oxygen, glycolytic pathways will take over. All of this is meant to help the body metabolize different compounds and maintain energy homeostasis relative to environmental demands.

Different Energy Pathways for Different Cells

The body requires an enormous amount of energy to meet the demands of life. We effectively turn over our weight in ATP every single day. Every. Single. Day. That is absolutely remarkable. When we exercise, we produce even more – 0.5 to 1.0 kg per minute. Fully 95% of this energy comes from mitochondria, making mitochondrial fitness of the utmost importance. Many cells contain anywhere from 1000 to 2500 mitochondria and can represent from 25% to upwards of 60% of the cell volume. Accordingly, the average cell may use upwards of 10 billion units of ATP per day.

The production of ATP is critically important for survival and so its manufacturing of ATP is inherently dynamic and adaptable. The body will take whatever it is fed and turn it into energy using whichever pathway is available. So even when we feed ourselves garbage food, the body will do its best to manufacture some quantity of energy. The body does, however, have preferences. Importantly, different types of cells favor specific fuel types or pathways.

Skeletal muscles, for example, use fatty acids shuttled through the mitochondria for fuel when at rest but switch over to glucose, creatine, or lactate via glycolysis as exercise intensity and/or duration increase. Creatine, synthesized in the liver from glycine (and taken as a popular supplement in the athletic community), is part of a system that effectively recycles ATP in skeletal muscle during intense bouts of exercise. Lactate, originally believed to be a waste product, is actually an important fuel source. The ability to repurpose lactate, and metabolize it into ATP, whether via glycolytic pathways or via derivatives that will enter the mitochondria, is a major determining factor in forestalling fatigue for athletes and non-athletes alike.

You might be thinking, if glycolysis produces less energy per unit of glucose, why would the body choose to use it? Two reasons. The first is speed. Sometimes the energy is needed more quickly than can be provided by the mitochondria. So the body trades some capacity for speed. This occurs in fast-growing cells like the immune cells that need to replicate quickly during an infection. Similarly, high-energy situations like intense and quick bouts of exertion favor glycolysis. These are normal and adaptive. Secondly, glycolysis and its sister pathway, the PPP, also provide important components for cell building. If that is what is required, those are the pathways that will be used.

Unfortunately, glycolysis is also favored when the mitochondria are struggling. Here, molecules that would normally be shuttled into the mitochondria are diverted into other paths, and energy production is diminished. This is common in patients with metabolic disorders. The excess intake of sugars often paired with a lack of micronutrients overwhelms mitochondrial capacity, and as a result, much of the glucose remains in the cell and is either metabolized into what few ATP the cell can muster via glycolysis or shuttled towards other pathways that will act as waste management and expend rather than create energy. Cancer follows this pattern.

The continuously active heart cells require a huge amount of energy, approximately 6 kg of ATP per day to pump blood, most of which comes from the mitochondria. At rest, ~90% of the heart’s ATP comes from the oxidation of fatty acids in the mitochondria. During exertion, there is a slight shift in substrate preference and more glucose is used. Instead of a 90/10 split of fats to glucose, with activity, the split is closer to 60/40. In either case, these numbers show us that mitochondrial capacity and diet are incredibly important for heart health. Low fat, high carbohydrate diets, as have been recommended for decades, go against the fuel preference of a healthy heart. The result of this type of diet is evident in the cardiovascular disease associated with metabolic syndrome. With metabolic syndrome, which represents nothing more than dietary damage accrued over time, the mitochondria lose the capacity to metabolize fatty acids for ATP and instead must rely exclusively on glucose for energy. The resulting decrements in energy underlie many of the aberrant patterns in rate, rhythm, and pressure. The heart simply does not have the energy to pump effectively at rest but especially under stress. Importantly, with metabolic syndrome, dysfunction expands beyond the heart, and other cells will also lose the capacity to metabolize fatty acids, gradually shifting to a more glucose/glycolysis dominant metabolism.

The brain consumes a substantial amount of glucose to meet energy needs (5.6mg of glucose per 100g of brain tissue per minute), with neurons using up to 80% of that energy. While the brain represents only about 2% of the body’s mass, it consumes 20% of the daily energy budget. Since the brain and the nervous system effectively manage all aspects of survival, decrements in energy metabolism have deleterious effects not only on the range of behaviors typically attributed to the brain, thinking, memory, planning, speech, emotion, movement, and the like but also on the automatic or autonomic control of organ function. For example, the parts of the brain located in the back of the head, collectively called the autonomic system (the cerebellum and brainstem, together with the nerves that flow through the spinal cord to the various organs and tissues), are exquisitely sensitive to changes in energy availability. The brainstem especially, because it controls breathing and heart rate, the two most important functions for survival, requires massive quantities of ATP. When energy availability is compromised, heart rate, breathing, and other autonomically controlled systems become dysregulated leading to what is now called dysautonomia.

Although most of the brain’s energy is derived from the oxidative phosphorylation of glucose within the mitochondria, here too, lactate recycling, extra-mitochondrial pathways like the PPP and glycolysis also play a role. Additionally, as ketogenic diets have shown us, the brain may use ketones derived from fatty acids as a fuel source.

Even proteins may be used for brain fuel. This is a relatively new discovery and not widely appreciated, but a set of neurons in the hypothalamus called the orexin or hypocretin neurons (same neurons, different names), require amino acids to fire. Specifically, and in order of potency, glycine > aspartate > cysteine > alanine > serine > asparagine > proline > glutamine induce orexin firing. This is important because these neurons are the primary energy sensors in the brain. They are responsible for maintaining wakefulness, providing the motivation to eat, and monitoring brain energy levels as a whole. Mutations in these neurons are responsible for narcolepsy, but due to their energy-sensing role, any disruption in brain energy, may force sleep and induce anorexia. In other words, these neurons control survival functions that become disrupted when ill. Low concentrations of orexin/hypocretin lead to what is called ‘sickness behaviors’ – the behaviors that every organism exhibits when ill. These neurons are also involved in precipitating migraine implicating brain energy deficiency here too. Interestingly, unlike other neurons in the brain, where glucose spurs activity, in these neurons, glucose spurs inactivity, perhaps through associated inflammation. Glucose, particularly high glucose, will cause these neurons to stop firing, which may be perceived as excessive fatigue, an insatiable need for sleep, and when severe enough, coma.

Of interest, the most important amino acid for the proper activity of these neurons is glycine. Glycine is an essential amino required for protein synthesis and repair. It is also an excitatory neurotransmitter in its own right, affecting other neural systems. Glyphosate, the chemical used on virtually all commercially grown agriculture (and thus, consumed by all commercially grown livestock), is a glycine analog. That means that whenever we consume commercial foods where glyphosate-based herbicides are used liberally, we are substituting natural and endogenous glycine for a synthetic analog. This substitution has a long list of health-derailing effects. Another ill-effect to add to that list may be the inappropriate regulation and responsivity of the orexin/hypocretin neurons.

The Composition of Calories

The section above illustrates the necessity for providing a variety of whole and uncompromised foods to fuel the body and it should fundamentally shift how we perceive the energy capacity of different food types. The body requires a variety of fuel sources to function appropriately. From the calorie-focused perspective of energy, none of this matters. It is assumed that so long as there are ample calories, energy production will be maintained at sufficient levels. The makeup of those calories is inconsequential to ATP output. This is clearly incorrect. For even if we look only at the raw numbers of units of ATP per pathway, it is evident that the composition of the diet matters. Someone who eats a predominately carbohydrate-based diet will produce quantitatively fewer ATP molecules than someone whose diet derives the bulk of their calories from fats. Similarly, the ability to funnel macronutrient components through the mitochondria and to run OXPHOS will produce more energy than if one’s cells are stuck in the glycolytic pathways. When a diet is skewed towards one type of food, the pathways that rely on the other macronutrients will be impacted negatively and this, in turn, will affect the organs that prefer one type of fuel over another.

If we dig a little deeper and look at the composition of consumed carbohydrates and fats, there are even more differences to consider. For example, carbohydrates coming from refined sugars like high fructose corn syrup (HFCS) produce less ATP than those that come from whole and unadulterated grains, fruits, or vegetables. In fact, the metabolism of HFCS requires ATP rather than produces it, and as an added complication, a good portion of the metabolized products derived from HFCS never enter the mitochondria but are instead converted to triglycerides and stored as fat. Similarly, consumed fats that come from animal fats versus seed oils, differ in their ability to produce ATP. Soybean oil, an oil extracted from soybean seeds, not only incites inflammation and a host of other ailments, but it downregulates the enzyme that sits at the entry point to the mitochondria, effectively blocking glucose metabolism and shifting everything to glycolysis for a huge net loss in ATP production. Since all heavily processed foods contain both of these ingredients, consuming these products with any regularity diminishes, and likely damages mitochondrial function. The net result is poor energetic capacity.

And if we dig deeper still, we find that the thousands of chemicals used to grow, preserve, enhance, and package these products, leach nutrients, derail mitochondrial functioning, and in many instances, evoke mitochondrial cell death. Consuming these foods, as so many of us are inclined to do regularly (57% of kcal in the American diet is composed of ultra-processed foods), leads to poor mitochondrial function and limited energetic capacity. It is not just the processed foods that have become problematic though. Conventionally grown produce is less nutritious than what was grown a few decades ago before the adoption of glyphosate-based herbicides and the genetically modified plants designed to withstand these chemicals became so pervasive. As discussed previously, glyphosate-based herbicides like Roundup that are ubiquitous in conventional agriculture (1.8 billion pounds of glyphosate used annually, enough for 4 pounds per person per year), block glycine. These herbicides also chelate (remove) minerals from the soils and plants and from the humans who consume these products. Minerals like calcium, magnesium, zinc, and manganese, which, as we will see later, are critically important for mitochondrial function. Indeed, the original patents for glyphosate involved its industrial descaling capacity, exactly the mechanisms enacted in the human body. It should be noted though, that glyphosate is just one of the tens of thousands of chemical toxins we are exposed to daily, most of which have never been tested for safety but instead are assumed to be safe under the poor regulatory template called GRASgenerally recognized as safe.

Each toxin that we ingest (or breathe), requires an ATP-using response from the body, thus diminishing potential reserves by some quantity. One can imagine, how over time the repeated consumption of these types of products might fundamentally alter mitochondrial function and reduce ATP capacity. Importantly, since the gastrointestinal (GI) system provides the interface between consumed foods and the rest of the body and is responsible for the digestion, absorption, and metabolism of food-based nutrients and excretion of toxicants, reduced mitochondrial functioning e.g. reduced ATP in the GI system is doubly problematic. Not only is GI functioning disrupted and oftentimes damaged by these types of foods, but the ability to derive nutrition becomes impaired as well. It takes energy to make energy and it takes energy to extract and metabolize nutrients and excrete waste products. Commercial foods, while high in calories and non-caloric additives are low in energy. These foods lack actual nutrients and nutrients are what mitochondria need to make energy.

How Do We Fix This Mess

It should go without saying that we ought to eat better and avoid food and other toxins where we can, but the food landscape is such that this can be difficult, especially if one is already ill and reactive to many foods and/or other substances. In those cases, it is important to understand what it takes to make energy from food, determine what is potentially missing from your diet, and replenish accordingly. This is not easy and will take a fair amount of detective work on your part, but it is possible.

We briefly covered the macronutrients, here we will look into the micronutrients. Micronutrients are vitamins, minerals, and some metal ions. In generations past, before we sterilized the soils with chemicals and modified the plants to withstand those chemicals, one could consume a complement of these micronutrients so long as one had a reasonably balanced diet. It is here where the concept of calories made a little more sense when food was food and not some commercially derived concoction. That is no longer the case. The advent and escalation of herbicides, pesticides, and the slew of additives, preservatives and other noxious chemicals in the food chain have effectively stripped modern foods of nutritional capacity while retaining caloric content. This means, that for many people, supplements will be required. Which ones and what dosages, however, will vary significantly. For that reason, it is important to understand how the mitochondria work so that you may become your own expert.

Broadly, for foods to be metabolized into energy, for any macronutrients to enter the mitochondria and run OXPHOS, vitamins and minerals must be available to power the enzymes leading to and through the mitochondria. If there are insufficient vitamins and minerals both in general and relative to the concentration of macronutrients (high calorie, low nutrient foods) or demand (toxins, stressors, illness), the TCA cycle does not work, OXPHOS does not work well, the body has to shift to alternate pathways. With this shift, not only is ATP reduced but because these pathways burn dirtier, more endogenous pollutants, like reactive oxygen species (ROS), are released. The oxidative stress that ensues damages mitochondrial membranes, further taxing mitochondrial capacity. This damage simultaneously demands more energy to resolve while reducing the capacity to produce that energy. Over time, the ability to manufacture ATP becomes so disrupted and produces so much oxidative stress that the entire process of extracting and metabolizing foods into energy further damages the mitochondria. Eating the very nutrients the body needs becomes a stressor and the individual becomes stuck in a seemingly never-ending negative cycle of malnutrition causing more malnutrition with any attempts to rectify inducing negative reactions. This is the state I find many people with chronic illness in – in desperate need of nutrients but unable to consume them.

Let us look briefly at the micronutrients involved in deriving energy from proteins, carbohydrates, and fats. Below is a graphic from the book I co-authored with Dr. Derrick Lonsdale. While it focuses on thiamine, it lists many of the other nutrients required for mitochondrial metabolism. Notice that within each pathway, a variety of vitamins, minerals, and metal ions are necessary to power the multiple enzymatic reactions require to produce ATP. The B vitamins and magnesium, in particular, play an important role in the early phases of these processes.

Mitochondrial nutrients

If any of those micronutrients are missing or are in short supply, the enzymes requiring those nutrients will not work as efficiently and the capacity to produce ATP will decline. With that decline comes a slew of compensatory reactions that will reallocate resources based on energy availability. Those reactions frequently involve inflammation, altered hormone regulation, and other adaptive measures, as reduced energetic capacity is a signal to other mitochondria and other cells that something is wrong.

Nothing works without energy and energy is impossible without the vitamins and minerals that drive mitochondrial function. Not even respiration is possible. Cellular respiration, the most fundamental form of respiration, the activity that breathing itself, requires critical micronutrients. Oxygen cannot be used or trafficked appropriately creating a state of hypoxia. Hypoxia, I believe, is what drives most modern illnesses. So let us take a look.

Micronutrient Deficiency Driven Hypoxia: The Root of All Illness

Among the least well-recognized reactions to reduced nutrients is a type of hypoxia called molecular or pseudo-hypoxia. Here, unlike the typical obstructive hypoxia, nothing is blocking or preventing oxygen intake. What is missing are the micronutrients required to power key enzymes involved in oxygen utilization. Specifically, for cells to breathe and to utilize oxygen to produce energy, the mitochondria require adequate thiamine (vitamin B1), magnesium, and riboflavin (vitamin B2). Looking at Figure 1, you will notice that thiamine and its activating cofactor magnesium appear frequently throughout each of the pathways used to convert foods into energy. Indeed, they are what are called rate-limiting co-factors in these processes. Meaning that if their levels dip, everything else downregulates as well.

Importantly, thiamine, magnesium, and riboflavin, along with alpha-lipoic acid, are integral to the functioning of an enzyme complex called the pyruvate dehydrogenase complex (PDC). PDC sits atop the mitochondria and acts as a gatekeeper of sorts. With insufficient concentrations of these micronutrients, the metabolism of glucose into ATP is blocked. The metabolites of other macronutrients, after some processing also utilize the PDC as an entry point, and so they too will be blocked from entering the mitochondria. As a compensatory reaction, the mitochondria initiate a series of reactions that signal danger. Among them is the release of proteins called hypoxia-inducible factors or HIFs for short. Once released, HIFs then signal all of the other changes consistent with chronic illness like inflammation, hormone reregulation, altered immune responsivity, etc. These are meant to be short-term protective measures that reduce energy requirements and increase blood flow and oxygen to the cells. Unfortunately, because these are nutrient-driven reactions, they will not be resolved until the nutrients come back on board consistently. As a result, these patterns become entrenched, and therein lies the root of many chronic illnesses.

Symptomatically, early one and when this set of reactions is limited to specific tissues, injury and inflammation will appear regional to those tissues or organs.  The GI system, both because it sits at the interface between food consumption and nutrient absorption and because the microbes that inhabit the GI tract also require thiamine, will often show disruption first. The poor nutrient landscape not only impacts energetic capacity, disrupts peristalsis, and the movement of foods through the tract, but also shifts the microbial ecosystem towards more pathogenic microbes that adapt more easily to the nutrient-starved environment.

When nutrient deprivation goes on long enough and the HIFs become stabilized, not only do we see all of the compensatory reactions mentioned above, but when severe enough, we will see underlying molecular hypoxia manifest like a sensation that one cannot get enough oxygen, even though oximeter readings are perfectly normal. This is frequently referred to as air hunger.

Whatever the individual response, however, since mitochondria control life and death cycles at the cell level, ailing mitochondria that cannot manage these cascades effectively, die a messy, necrotic death that is highly inflammatory and immune reactive. What little intracellular ATP is available to power cell function is spit out of the cell and used as a danger signal to other cells. High levels of extracellular ATP are indicative of severe mitochondrial stress. When this happens, even less intracellular and intra-mitochondrial ATP is available to power basic survival functions, and importantly, to create more energy.

This begins the downward trajectory of chronic illness where one needs energy to make energy but simply does not have it; where one needs key nutrients to resolve the energy crisis but does not have the energy to metabolize those nutrients.

Resolution and Prevention

Ideally, we would prevent the downward trajectory of mitochondrial illness, but modern life, such as it is, presents innumerable threats to mitochondrial energetics. The biggest, of course, is poor diet. By focusing on the caloric content of foods, and the ease and speed at which we can prepare those foods, rather than their capacity to provide critical nutrients, we have missed the physiological purpose of eating – to provide energy to live and to function. In light of what is required to create energy from food, balanced macronutrients with an array of micronutrients, we must consider the composition of the foods we eat, especially when one is dealing with a chronic and seemingly treatment-refractory illness.

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This article was published originally on July 19, 2022. 

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Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

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I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

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Hysterectomy Experiences: Chronic Fatigue

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A few years ago, I began writing for Hormones Matter about the gross overuse and adverse effects of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern of unwarranted removal of organ(s) without informed consent and ensuing declining health. We are publishing a series of articles highlighting women’s comments. This is the fifth of the series and addresses the common complaint of chronic fatigue. The first article is about lack of informed consent and can be found here. The second one talks about how our “exterior” settles / collapses after the uterus is removed. The third addresses organ dysfunction and the fourth is about loss of sexuality and emotional emptiness. Although the 90% elective rate of these surgeries would imply that they are “restorative” or at least harmless, medical literature and women’s experiences prove otherwise.

Chronic Fatigue and Loss of Stamina

Many women commented on my other articles about chronic fatigue and loss of stamina and vibrancy since their hysterectomies even if they still had their ovaries. Although sleep problems were a common complaint, even absent those, women just couldn’t seem to get past the chronic fatigue and lack of stamina. These experiences match those of the majority of 1,000 hysterectomized women surveyed by the non-profit HERS Foundation. Those results are as follows:

  • Loss of energy:  78%
  • Profound fatigue: 77%
  • Loss of stamina: 69%
  • Insomnia: 61%
  • Unable to maintain previous level of activity in home: 34%

The complete list broken out by hysterectomy only, hysterectomy with one ovary removed, and hysterectomy with both ovaries removed can be found here. Below are comments from some of my articles.

Chris (age 64) says:

“My husband and I had and unbelievable sex life, I had loads of energy and strength and was able to joke about being “37”. I now feel like and old woman. I want to sleep more then move, I have little strength….”

Jacqueline:

“I have no energy at 38. I have more problems now than I did before surgery.”

NJ:

“The Testim has helped my energy levels but I have lowered the dose as my body hair increased.”

Joshua:

“…my finance had a cervical hysterectomy [sic] back in January of this year and she seems to be having issues with mood swings sex drive depression and fatigue.”

BeBe:

“My hysterectomy was necessary due to Essure permanent birth control. One migrated to my uterus and I was sick from that poison…. I’m 11 months post op…. I’m fatigued. Have migraines and have become very anti social.”

Joan:

“I was a very active women, always running around from 6am till 9pm…. I am tired all the time.”

Teresa:

“I’m 12 years post op…. I stay fatigued and have no sexual drive and depression….”

Sue:

“Hysterectomy [sic] in 2007…. Severe fatigue, bloating, pain under rib. No answers…. My life has been horrible since.”

Jill:

“…my energy levels have dropped too.”

Jen:

“I had TAH kept my ovaries (boy, that was a battle)…. I have had so many problems since…. I truly feel awful. My energy levels are just depleted. I’m dealing with idiot doctors rift now plus I am too tired to go to all these specialists…. I also have severe rib pain right and left. I have bowel problems too and the nausea and fatigue is hell.”

Irene:

“Ever since HYSTERECTOMY my whole personality has changed, gone from an outgoing lady to a hermit rarely interested in socialising and I have little energy and gone from 60kg to 70kg.”

Annele:

“Had my surgery in 2010, compared to photos of me and my energy levels, sex live, I have aged about 10 years in a 5 year period. My mother also went for her hysterectomy during 2012, she experienced similar side effects.”

Sharon:

“I can hardly get out of bed. I have no appetite, no energy, and I feel awful.”

Elaine:

“I ache constantly, I still get intense flashes and my energy level has gone from active (pre-surgery) to minimal…..I am so sleep deprived and so sore….I feel I was not thoroughly informed and this surgery was the biggest mistake! I cry and yearn for who I was a year ago.”

Julie:

“Ever since surgery I had so much pain, discomfort, fatigue, and now depression. I used to be real busy with my family going outdoors for hunts, fishing and picnics. Now days I just barely do anything and my whole life has changed. My health has just been going down.”

Lyn:

“After 3 months post surgery, I had to retire my full time profession as a licensed therapeutic massage therapist due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… My balance has been compromised and have had (4) falls since surgery…. I use to enjoy my walks with my dog and make attempts daily, but I become winded and fatigued almost instantly….”

Sue:

“My health just continues to decline. I was the most active person before this surgery, now I do nothing most days. I’m very concerned about my bowel issue and the relentless fatigue.”

Angela:

“I saw my mother destroyed by a hysterectomy at 38. This has been going on for decades and the denial has to stop. Women don’t even have to tell me they’ve had one. I can see it – in their faces, their hair, their figures, their lack of vitality.”

Jacqualine:

“take ambien to sleep”

Marlo:

“I can’t sleep at night.”

KA:

“taking a sleep aide”

Rebecca:

“Can’t sleep, wake up with headaches every day. Having major sweats, Loosing my hair and my mind!”

I caution any woman who is told she needs a hysterectomy and/or oophorectomy or is considering one to heed these comments. With the gross overuse of these surgeries, chances are she’s being sold a false bill of goods. It’s not always a good idea to rely solely on your doctor’s advice as Someone

Who Cares cautions:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the lifelong functions of the female organs. It also has information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or hysterectomy induced loss of ovarian function.

Share your Story

If you have a hysterectomy story, please consider sharing it on Hormones Matter.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was first published in April 2017.

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How Did I Get Here?

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As many of you may know, I have been working on a few books as of late. This has limited my ability to write for Hormones Matter with any consistency. Absent new content, numbers drop. (For all of you who have been contemplating writing for us, now is the time.) In the meantime, I decided that I would share excerpts from the books. This is an excerpt from the first chapter of the book that I have tentatively titled: How to Heal from Almost Anything.

How Did I Get Here?

“And you may find yourself living in a shotgun shack

And you may find yourself in another part of the world

And you may find yourself behind the wheel of a large automobile

And you may find yourself in a beautiful house, with a beautiful wife

And you may ask yourself, ‘Well… how did I get here?’”

–Talking Heads, Once in a Lifetime

Ask anyone who suffers from a chronic and debilitating illness about when they became ill and they will often pinpoint an event or time frame before which they considered themselves healthy but after which they were ill. Sometimes the event is another illness, perhaps something seemingly benign like a cold or flu, or maybe, a particularly stressful period of life, like loss of job, divorce, or death of a loved one. For girls and women, reproductive changes like the onset of menstruation, pregnancy/postpartum, or even menopause often precipitate chronic illness. In many cases, chronic health issues can be linked to medication or vaccine reactions, sometimes acute and other times accumulative. Surgical procedures too might herald the onset of illness, even when the surgery is considered a success. Whatever the cause, however, when speaking with people about their illness, they will inevitably proclaim: “I was healthy before ‘X’ and now I am not.” In contrast, when speaking with people who have recovered from chronic illness, they will often express how they have never been healthier, that they look and feel younger, and that they are doing things that they never imagined possible. This begs the question, do we really know what health is? Probably not. We think we do, but how modern, Western culture portrays health, has very little to do with actual health.

So, how did we get here, or more specifically, how did you get here? How did you get to the point where your health has declined so much that no physician yet has been able to help you heal or even offer hope of healing? How is it that after seeing dozens of physicians, after being given multiple diagnoses, sometimes simultaneously, and each with its own complement of medications, you are no closer to health than you were before illness became your life? In large part, the answer rests in how we conceptualize health versus illness. Think back to when you considered yourself healthy. What did that look like? What was your diet? What was your level of activity? Did you already take medications for minor ailments? Did you drink? Did you smoke? Answers to these questions define whether what you considered ‘health’ was actual health or just an illness waiting to happen.

If we deconstruct what most of us consider healthy, we find that it has nothing to do with actual health. For example, in our work on Hormones Matter, we see case after case of women who develop serious illnesses after a medication or vaccine. More often than not, they considered themselves ‘healthy’ prior to the medication or vaccine reaction, but when we dig in, we find they were not healthy per se, just relatively symptom free. That is, their diets were typical Western diets, full of processed foods, high fructose corn syrup, and chemically laden, conventionally grown produce, if fruits and vegetables were consumed at all. Frequently, alcohol was used regularly, perhaps not in great quantities, but regularly nevertheless, as were various medications, like ibuprofen and other pain killers, sleeping aides, maybe allergy pills or anti-depressants, and often hormonal birth control. All of this, of course, is in addition to, an increasing number of antibiotic, vaccine, and other chemical exposures common in Western countries. Nevertheless, even with this constant onslaught of chemicals, most of the folks we speak with were quite active, some were athletes, scholars, or successful professionals before their current illnesses struck. That is, with the help of medication, they functioned and functioned quite well. The question is, can we call that being healthy?

Certainly, if we define health by one’s ability to function, no matter how many medications it takes to achieve that level of functioning, then yes, this can be considered health. And for most of Western medicine and Western culture, functionality and outward appearances define health. So long as one functions, is able to perform whatever tasks deemed necessary to living, and so long as one ‘looks’ healthy e.g. is of an appropriate body weight, neither the quality of one’s diet nor the environmental exposures, the alcohol, tobacco or medication use, or any number of other obviously unhealthy behaviors matter.

Seriously, does anyone really believe that a diet of chicken nuggets washed down by soda and tempered by a regular cocktail of metformin and statins is healthy?

Until, of course, it does matter and that is where the problems with Western medicine become fully apparent. When there are no more medications or surgical interventions that let us approximate health, when indeed, each new medication only worsens health, and when functioning becomes utterly impossible, that is when we wake up and begin asking some very difficult questions, not the least of which is ‘how did I get here?” In so doing, we often find that how we defined health until this point, was anything but healthy. It was a useful facade, to be sure. It allowed us to ignore what deep in our gut we knew were not healthy behaviors and continue on as if they were. It allowed us to ignore all of the early signs of impending demise, and most importantly, it allowed us to function in an otherwise chaotic environment rather than change the environment.

Admittedly, there are many positive aspects of this approach. Life requires survival, and adapting to a chaotic environment by whatever means possible is the pinnacle of survival. Where we run into problems, however, is when this approach becomes the dominant model of not only everyday life, but also, of medical practice and we forget entirely what health even looks like. That is where we find ourselves now, so enmeshed in this model of medicine, we have forgotten what health even looks like, much less how to achieve it.

That is all for now.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

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Celebrating a Diagnosis of Chronic Illness? You Bet.

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I’m Celebrating Today, but not for the Reason You Would Think

Today is a day of celebration for me! However, my celebration is probably not one that someone would consider a reason to celebrate. You see I have spent years and years being ill, matter of fact looking back to my childhood, I can honestly say that I was never a healthy person. I was always suffering with one painful area after another. Then when I hit my early twenties my health began to spiral out of control. At first it was a slow progression, but with each passing decade the destructive progression of whatever this was began to speed up. I continued to fight like hell to push through whatever this was that was happening to my body. I spent countless hours crying in pain and more trips to the ER for help then I can even count. The doctors would run one test after another on me and find nothing other than inflammation of unknown origin.

As the years went by, I would find myself traveling the country searching out one specialist after another. Many would take a guess as to what was happening to my body and then some would tell me that it was all in my head and show me the door, while others would then label me with one autoimmune disease after another. Each autoimmune disease was based on whatever area of my body was inflamed at the moment. If my skin was inflamed they would label me with psoriasis. If the joints were inflamed I would get labeled with some form of arthritis like Lupus or RA. If it was my stomach or colon I would get labeled with Crohn’s disease and on and on it would go. By the time I hit my forties, I had truly become the queen diseases, yet no one really knew with any certainty what was wrong with me. During these years I would try one drug after another to help quell the progression and ease my suffering but most did very little and many caused more problems.

The First Clue: Ehlers Danlos Syndrome

A breakthrough would come in 2007 when I would be genetically diagnosed with several forms of EDS (Ehlers Danlos Syndrome). This would lead to several answers for many of my problems, such as Dysautonomia, Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, etc.. However, it still did not account for the systemic inflammation, the deterioration that was now being seen in imaging or through other testing. It also did not account for the level of suffering and pain I was dealing with. On top of this there really wasn’t any treatment for EDS or the sub-illnesses it had caused. It would be at this point that my doctors and I would turn to just trying to treat my symptoms as they arose. This included pain pills, anti-seizure meds, stomach meds, etc.. Most of these treatments did very little other than to lessen the pain, but because the inflammation was still raging in my body like an all-out war, I continued to experience further disabilities due to destruction of joints and organs. My life had become a living hell to say the least!

Fluoroquinolone Toxicity Syndrome and Lyme: A Wonderful Combination

By 2011, after another bout with diarrhea, I was once again given another dose of Cipro, only this time combined with my prednisone. This would set off a severe reaction within my body known as Fluoroquinolone Toxicity syndrome. This reaction coupled with my EDS (which is a collagen depleting syndrome), would leave me bedridden for years. I would once again try like hell to fight my way back to some kind of normalcy. I finally had reached a point of being able to get up and take care of myself and began to be able to walk again. Now this is not to say that all my previous problems, pain and disabilities had also gotten better because they had not. As a matter of fact, they had continued to progress. However, I tried to adapt to my abilities, body and life and in celebration of being up and out again. We decided to take a trip to Tennessee. It would be this trip that would once again, throw my life into a turmoil. You see I had been bitten by a tick; one that was carrying a whole host of infections, which it so kindly infected me with.

For the next 8 years, I would aggressively attack all the tick infections I had been positively diagnosed with. It was a long arduous battle that kept me very ill and quite often bedridden again. Then just as it seemed that I was turning a corner with beating these infections, I would go into another “flare”, sending me reeling and back to my bed once again. My abilities and life had forever changed and not to the betterment either. Many nights, as I lied in my bed crying softly to myself, I would wonder if I would ever know a moments peace again. During some of those nights I would literally fantasize about dying and think how glorious it would be to be out of pain once and for all, but not having lived my life to the fullest yet, I would pull myself back from the brink of swallowing a whole bottle of pain killers.

The tick infections would go on for so long that I had lost the sense of who I was and who I once was. I had reached this point in my mind of thinking that if I could just get back to when I was younger, my life would be so much easier, because after all I had been healthy back then, right?! This somehow had become a false fantasy that I had placed in my mind, maybe because my health had become so bad that looking back on my youth made it seem as though I had been truly healthy, but in truth that was not the case. It would take going into cognitive behavioral therapy for me to look back on who I was and how unhealthy I really had been. This would be the dawning moment for me!

Ill Since Childhood

Once I had realized that my health had been going downhill literally from the moment I took my first breathe of life, I quickly realized that everything I was going through and had been through since taking that fatal dose of Cipro was not the end all to my health problems. This included the love kiss I also received from that fateful tick in Tennessee. No, my health problems dated far back into my earlier years and even after the diagnosis of EDS, there was still a sense of something more sinister still taking place within my body. It was something that no doctors had yet been able to place their fingers on, but it was something that was eating my body one cell at a time and leaving me in total and utter grief.

It would be then that I would begin to wake up and question the tick infections as still being viable within my body. I mean after all I had spent seven of the eight years saturating every cell and nook and cranny of my body with every kind of antibiotic, anti-fungal and anti-parasitic drug out there and this was not to mention the numerous alternative therapies. How could these infections still be so alive within me? How?! At this point I would sit down with my doctors one by one and go through my life, chapter by chapter, from one illness and label to another. I would question them on everything they knew and then some. In the end, they too would come to the same conclusion as me, this could no longer just be Lyme and company. No, there had to still be some sinister force lurking within my body; the same damn one that had showed up days after I took my first breathe of air and one that was continuing its ugly assault on my body, with no mercy!

The quest began, I was determined to find this beast and put a name to it. I made a promise to myself that I would not die without first being able to look this beast in the face and name it. I was going to find him within me and level this playing field once and for all! So, I began pouring through every medical book and journal out there. I was so intent on finding the answer that I literally kept a journal of every disease that had any possibility of being my monster. I came close to fitting hundreds of different diseases, but with the help of my doctors we were able to narrow it down to just a few. Once we had settled on a few, we began looking for any kind of definitive testing available for them. Thank God science has been moving at the speed of lightening over the past decade because they made our quest for diagnosing many of these diseases as easy as a DNA blood test. I would drag my ailing body into my doctor’s office week after week, throwing down one more disease to test for, but as each came back negative my hope for an answer slowly, but surely, diminished. It was as if someone had slowly let the air out of my birthday balloon and it left me as deflated as that balloon on the floor. Thank God my doctors were as curious as I was for an answer because they kept giving me encouraging words and propping me up when I thought the quest for the Holy Grail was over.

The last test, the very last test that we thought I might have was done and when it came back negative too, I collapsed on the floor, sobbing as if someone had stolen my new puppy. I cried for days on end, setting off my mast cell so bad that my face had swollen to a nearly unrecognizable state. I had been beaten and defeated and as I laid in my bed envying the people in the obituary columns. I began to think maybe this was still Lyme. What would it hurt to go back and try antibiotics once again? So, I set up an appointment with a new Lyme doctor and set off to see him. This doctor sat there listening to the story of my journey with wide eyes open and as my story continued I could see his facial expression go from “I think I can help you” to “I’m not going to be able to help you”. As I finished my story, this kind man sat back and explained to me that I still may have Lyme, but that there was something more at play here, maybe it was the EDS and all the sub-illnesses it causes, or maybe it was the floxing from the Cipro, or maybe it was this dark lurking beast that no one could pin down, but in any case, he was not sure that more antibiotics were going to bring me any further than I had already come. However, he was more than willing to administer them, but warned me that they would make me very ill again, worse then what I already was, and once I recovered, I would more than likely be right back to my baseline; the same baseline I was at sitting in front of him that day. Now, I thought for sure that I was going to fall on the floor and begin balling like a baby, but after a moment of thought, I realized this man just gave me the vindication that this more than likely was no longer Lyme and company, so there still had to be some sinister force lurking within me. So, I told the doctor to please run every Lyme and company test on me again, and while I waited for the results, I would go home and think about re-entering the world of antibiotics and Lyme.

Time to Regroup

I went home that night not as upset as I thought I would be and called my regular team of doctors. I told them what the new Lyme doctor had said and explained the route we were going to take with the tests and my thinking about treatment again, although my mind was already pretty much leaning toward not going down this road again. My team of doctors were thankfully on the same page as me and were quite supportive in whatever my decision was to be and in helping out in any way they could. Over the next few days, I would sit in complete silence going over every chapter of my life, page by needless page. I would recount every conversation with every doctor I had seen and mull over every test that had ever been done on me. Then it was as if a light bulb had gone off in my head. No, actually it was more like the finale to a great fireworks show on the fourth of July that burst from my brain! I quickly grabbed my notes and poured through them, I knew what was going on for the first time, it was all coming to light, the beast was being exposed and I had him cornered!

You see, I vaguely remembered a rheumatology appointment that I had had shortly after being diagnosed with IBD. The rheumatologist who I had been working with for over a decade had brought up this disease, but because he had given me so many labels of autoimmune diseases over the years, all of which I would now find out went along with this illness, that I took what he had said with a grain of salt and then threw it out like the baby with the bath water. Instead, I went back to my GI doctor who had just diagnosed me with IBD and felt this is where I needed to focus my attention and just maybe if we conquered this illness the rest would just fall into place. I never did go back to the rheumatologist and soon after that appointment, I would also be diagnosed with Lyme disease, a disease that could account for all my inflammation. This then quickly put the rheumatologist’s theory of a new diagnosis out of mind. I thought between the IBD diagnosis and the Lyme disease that I had finally found my holy grail and all would be well soon. Unfortunately, at that point in time it never dawned on me that my long standing systemic inflammation had started long before the tick bite and even the IBD diagnosis. Now, I don’t know if I just wanted it to be this easy (not that treating either of these illnesses was an easy walk through the park, but compared to what I had been through already it seemed like this was going to go smoothly from here on out) or if I just wanted to live in a state of denial and pray like hell that this was all there was. If I had only had a crystal ball way back when, so as to see that nearly a decade later I would still be suffering terribly, dealing with more body wide destruction and once again searching out the horrible beast that would still be lurking inside me. Maybe then I would not have thrown the baby out with the bath water, but instead took each new finding as being one step closer on my journey to meeting the beast face to face.

Eureka Moment

So, coupled with this vague memory and some new found information, I set out to look up the diagnostic criteria for the disease that I was sure this time was it. I sat there reading it line by line checking off each criteria I had met, and by the time I had reached the last point of criteria I realized that I had checked off every box! I looked up from my computer, while sitting there on my bed and felt as though the heavens had opened up and the sun’s rays came shining down on  me, all I needed now was a chorus of angelic singers to fill the room, like you see in some religious kind of movie where God opens the heavens down on to you and delivers the miracle you had so desperately prayed for!

Now as elated as I was, I knew I had to get my ducks in a row before once again bringing another disease to my doctors. So, I looked up the overview of the disease along with the symptomology, as well as any other testing needed to determine if someone had this illness. There was my choir of angelic singers, every note on the page poured out my life’s story of existence. Starting from the very early days of symptoms to the progression of the illness throughout my young adult life, to where I was at now. Not only could I see myself within these symptoms but also other family members, many who like me were in search for the mysterious beast lurking within themselves too. I would go on to see the sub-illnesses often associated with this disease and again like pages in the novel of my life there was each disease one after the other laid out in the succession I had so exhaustedly exhibited. Finally, the diagnostic criteria used in determining this illness would go on to show the systemic body wide destruction this beast would cause over a life time, the same destruction imaged and seen so often in my own health records. With all this knowledge now in hand you would think I would run off to the phone to call my team of doctors, but before releasing the congratulatory balloons, there was one more thing for me to check. I needed to know if and how this disease was related to EDS. So, I looked it up and there in plain sight was my answer, it was one of several sub-illnesses often seen alongside of EDS. Once again it was stated that people with EDS often suffer with this illness and as of yet like so many of the other sub-illnesses associated with EDS, there was no known reason or verifiable scientific connection as to why. Well, I had all I needed now, so it was time to let the team in on this one.

The Diagnosis: Ankylosing Spondylitis

I tried to stay calm as I called and messaged each doctor. I went through each bullet point I had made in my notes and then brought up the prior raising of this illness many, many years ago now. I laid out my case, like an eager new lawyer, I presented all the evidentiary evidence that had been collected over thirty years of living with this illness. I was precise and on point, I was ready for any of their questions, yeah I was in this to fight like a lawyer who was trying to save their client from the electric chair! When I finished pleading my case, I sat there in silence as each of my doctors took the information in and then there it was, those glorious words “OMG! You hit the nail on the head” They had never thought of this diagnosis and were unaware that a rheumatologist so many years ago had hit on this disease. Each of them had some vague knowledge of the disease and some had even treated other patients with it, but none had thought about applying it to me, mostly because I came to them without the diagnosis and my symptoms seemed to manifest over decades, leaving everyone bewildered. Once they had heard me plead my case point by point right down to this last flare which once again encompassed a part of my spine they knew I had hit the right diagnosis. I would then go in and get formally diagnosed. A week later the choir was singing my praises as the heavens opened to shine down on me. I was officially diagnosed with this disease. Okay it was time to tell the family and throw the celebratory party, you know the one that screams with pure joy “That I have a progressive inflammatory disease and it has a name, it’s called Ankylosing Spondylitis!!!!”

I had found the beast, I had finally seen his face and from here on out we were going to be on an equal playing field. I know to most people finding out that you have an awful progressive disease that is going to limit your abilities and turn your world, your hopes and dreams upside down and inside out, would be devastating to say the least, but for someone who has been chronically ill for years on end, it came as a sweet relief. You see chronically ill people live somewhere in between getting sick and death. What I mean by this is that we are all taught from an early age that if you get sick you just simply go to the doctor, who then runs his tests and diagnosis’s you. You then get a prescription which you take and within a few days to a week you are back up and rejoining the living world. Or we are taught that you get sick and you go to the doctor who then runs his tests and with sadness in his voice he explains to you that you have some awful deadly disease, which in turn you go home to prepare for your death. However, there is this place in between that getting sick and death and that place is known as chronic illness. It is a place where you go when your illness decides to never leave. It is place of fear, isolation, and loss of job, finances and quite often even family. It is also a place where patients often find themselves being abused at the hands of the very people who are supposed to be helping them find their way back to health: the doctors!

You see for most doctors, they are taught that if you cannot see the beast within the blood work or on imaging, then the beast does not exist. In cases like this, the doctors then turn on their patients and quite often blame the victim for their own suffering. The worst part is that in 2019 we know enough about autoimmune diseases and genetic defects to know that many if not most diseases can often take years to decades to fully present themselves and in the meantime, the patient can go on to suffer the low level of inflammation that is still not able to be detected through our archaic testing. Yet instead of working with the patient, however long that may take, most doctors show the patient the door and blame them for their own suffering. The world of chronic illness is like the black hole where frightened ill people get sucked into against their will, to never be seen as human beings and a part of society again.

Being Chronically Ill

The unfortunate fallacy propagated by the healthy and even some doctors is that the chronically ill are lazy, they just don’t want to work or they like the attention and so on and so on. Well, I can tell you that anyone who is chronically ill works harder on a daily basis then even the hardest working healthy people. You see we work hard at “faking it” for the healthy so they will believe us and not leave us. We work hard at trying to manage our finances so as to be able to afford our multiple doctor appointments and medications. We work hard at searching for that one doctor, the one who will finally draw the beast out of us and name it and work even harder at convincing a doctor that we truly are sick and in pain. We work hard at doing daily necessities like showering and shopping, things most people do without a second thought, but for us it can leave us wiped out only to pay for days on end. We work hard to keep hope, so that one day we will find the answer and slay the beast, because if we didn’t work hard at this we would have ended our life after the first doctor showed us the door! We spend countless hours with doctor Google, praying we get lucky and hit the mystery medical jack pot! On top of all this many must still care for their children, while facing family ridicule for not getting well. We live through guilt and shame and fear and ostracization from society as a whole. Many are accused of being mentally ill and for many of us, myself included, spend countless hours questioning our own sanity. We are accused by doctors, family and friends alike of being attention seeking, malingering, or suffering from somatization disorder, or worse yet drug seekers! Yet none of this could be farther from the truth. We, just like anyone else, want nothing more than to get better and return to our healthy lives or at the very least have the beast named so we can set out a plan of attack to assault the beast who has raged this war within our bodies. We don’t want to spend one more minute in pain, we don’t want to see one more crass rude doctor and God knows we do not want to swallow one more pill or supplement that leaves us with awful side effects, no we want to be like you, healthy and full of hope and joy for the future, only this time with a new found compassion for those who are fighting a silent beast within!

So, yes after years of being ill, after years of being tormented by our bodies, our doctors, our family and friends and after years of losing everything we have come to cherish in life, when that elusive miracle of facing the beast actually happens and we have found our Holy Grail, we rise to our feet and do the happy dance, we shout from the roof tops that we are “really” ill and no matter what the diagnosis is or what the prognosis of the disease is we are ready to celebrate and celebrate hard! For no matter what the diagnosis brings in the future, it surely cannot be as bad as the journey itself was to finding the beast. We once again find a new kind of strength, only this time we are not fighting ourselves, the doctors or the ones around us, but instead we are finally fighting the beast and we do it with a glorious smile on our faces and little spunk in our steps! So, today I am celebrating my disease, Ankylosing Spondylitis, matter of fact I think I will even get some balloons and a cake, do you think they can write on the cake “Congratulations on your progressive disease!” LOL!

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The Disease – Medication Model of Modern Medicine

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As we begin analyzing the data from our studies and I search for ways to quantify the value of our data, I am repeatedly struck by how the business of modern medicine, especially modern pharmaceutically based medicine, has been conceived of, constructed, and is evaluated on a false and outdated premise of separateness. The notion that a disease is a completely discrete entity, that the disease process is linear and that one medication or set of medications impacts only the specified disease, predominates. This is just not so. Life is complicated, disease is even more complicated, and with the exception of perhaps the outright physical trauma of a limb or the need for immediate decision-making in acute or emergent care, nothing is as simple as the one drug, one organ system perspective from which we measure modern healthcare.

As an example, data from our studies are showing complex clusters of adverse reactions that are multi-system and often evade existing diagnostic categories. The symptoms themselves appear to cluster in ways that are unique and will inevitably lead to a deeper understanding of medication reactions, and hopefully, illness itself. For now, however, they appear to defy the logic of current diagnostic categories. The symptoms never quite fit neatly into a single diagnostic box that defines the disease course or guides a treatment plan.

Instead, the symptoms fall into multiple and sometimes contradicting disease categories, and rather than drill down to an appropriate diagnosis, the individuals in our studies have been assigned a long laundry list of apparently, co-occurring diseases; none, accurately characterizing the scope of their illness. When one disease does not capture the full breadth of symptoms, the trend is to add another. If that doesn’t work and when the interaction between the medications creates more unexplainable symptoms, add yet another diagnosis or three or five. Soon the patient has many active diagnoses, with multiple medications to go with. One has to wonder, how so many individuals can have so many diseases at once. Since, I suspect the laws of probability, and indeed, human physiology are contrary to the current multi-disease trend, it leads me to believe that the western model of defining and treating illness, as anatomically and genetically discrete entities, has reached the limits of utility. A paradigm shift may be in order.

Paradigms, especially in medicine and science, are often guided by forces that determine the limits of what can be known, or more cynically, what are considered acceptable pursuits of knowledge and science versus the flights of fancy of fringe scientists. In this case, I would argue that the forces controlling what can be known are those who profit directly from the current diagnostic system – the pharmaceutical industry. The deeply entrenched conflicts of interest between these corporations, policy makers, regulators, politicians, academic institutions, academic journals, medical societies, patient organizations, media organizations – the very ‘thought leaders’ that determine what is valid and what is not – lends credence to these suspicions.

And by every measure, what is currently valid, are the simplistic and discrete categories, with easily identifiable lists of medications for each, where additional diagnoses equal more medication possibilities or in economic terms more product sales opportunities. Whether the symptoms within these disease categories overlap with each other or even represent a true disease process seems to have little bearing on whether a medication can be fit to match a certain set of symptoms and linked to a diagnostic billing code. The diagnostic billing code becomes at once the arbiter of defined diseases and of what can be known about a particular disease. If there is no billing code, read no product or medication opportunity, the disease doesn’t exist, but if there are multiple, overlapping disease categories, no matter how poorly defined or distant from what the patient may actually be experiencing, there is product opportunity, and therefore the disease, or more likely, the diseases he or she is experiencing, exist.  And, if the criteria for defining a particular disease can be relaxed to include more patients and to maximize prescribing opportunities, well then, that is even better.

Consider the most recent recommendation by the American Heart Association and the American College of Cardiology to reduce the risk level for heart attacks necessitating a need for increased prescriptions of statin drugs. The change in guidelines will mean more Americans will be diagnosed with heart disease necessitating prescriptions for the cholesterol lowering drugs, a boon to the drug industry. In a few years, epidemiologists and those who study healthcare trends will report a predictable increase in the number of Americans with heart disease, more money will be poured into preventing heart disease with more medications prescribed and so on. It’s a fantastic business model, control the definition of disease to control the market for products. Will more Americans have heart disease? Not likely, but changing the diagnostic criteria, changing the billing code, to open product markets will give illusion of increasing illness and this benefits the manufacturers of these products.

Unfortunately or fortunately, depending upon which side one is on, lowering the threshold for prescribing opportunities does more than simply increase the number of patients to be given a particular diagnosis, it opens up additional product markets or diagnostic opportunities when the side effects of the primary drug kick in and necessitate treatment. In women, for example, statins increase the risk of Type 2 diabetes. By lowering the criteria for diagnosing heart disease and prescribing statins to more patients, not only will we see an increase in the rates of heart disease in a few years, but because the research tabulating disease rates rely on the diagnostic billing codes, we will also see a corresponding increase in the rate of Type 2 diabetes, most likely created by the increased use of statins. Similarly, because the medication used to treat Type 2 diabetes elicits a corresponding reduction in vitamin B12 levels, which present as a heterogeneous set of neurocognitive symptoms, in a few years, we’ll also see an increased rate of mental health conditions indicated by the growing rates of psychotropic medication prescriptions. And so on.

To be both the arbiter of what is known and can be known, to control the definition of disease and the guidelines for prescribing, is a brilliant business model, but one that does nothing to improve human health, further medical discovery or scientific understanding. Indeed, the survival of this model relies entirely on maintaining the facade of anatomical separateness in disease processes and on not recognizing the totality of medication effects across an entire physiological system. This model relies on remaining ignorant of the inter-connectedness of disease processes and by association the possibility of broad based ‘complicated’ medication reactions.

If diseases remain separate entities and medications work only on specified disease targets, then disease categories remain entirely under the purview of those who stand to benefit from prescribing opportunities. Data that link the onset of a disease to the use of a medication or redefine the scope of a disease process and medication target beyond a specified anatomical region can be easily dismissed. And that is where I find myself, having collected data that questions the accuracy of the current model of anatomically discrete, one medication-one target model of disease. Our data question a paradigm. What does one do with that?

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This article was published originally on November 18, 2013. 

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Shattering the Mirror: Becoming More than the Reflection of a Disease

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While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me?  I suppose not. But who really needs a Freudian slip to guess that one?  Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

What Can I Do To Help?

Hormones Matter is unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research, and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. And perhaps most importantly, contribute.

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This post was originally published in November of 2013. 

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Becoming the Person I Hoped I Was

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When life changes its mind about the size of the mountain you’re climbing, you will suddenly find that you have some decisions to make.  My husband got sick.  He was hit, badly, with long term side effects stemming from a short course of Ciprofloxacin (Cipro), a fluoroquinolone antibiotic. The side effects from Cipro can be a horrific and long term, but are often invisible. Blood tests come back normal, neurological exams reveal nothing of note, the sufferer often looks fine, and worst of all, most doctors are completely unfamiliar with these adverse reactions. This of course means that most people are completely unfamiliar.  We certainly were.  But without a doubt my husband was sick, and I had some decisions to make. The biggest decision I at first didn’t know I was making (daily, even minute by minute) continues to be this: what kind of person am I going to be?

I have unknowingly been faced with this decision before. Two years ago, James, the husband of a coworker got sick. Really sick. He had stage four esophageal cancer, and it was very unlikely that he would survive long after the “last hope” surgery.  His wife was not in a position to stay home and take care of him and she had to continue working full time. They also had two elementary age girls. Not much could be worse.

After his surgery, James had trouble getting enough calories. I like to bake so I made him some cookies, and a couple of chocolate cakes. Actually, what I really did was make cookies and cakes for my future husband and for parties, but I made sure to double the batches so I could give some to James. This was the extent of my support. James and his wife expressed their gratitude far beyond the reality of the gesture. This attention embarrassed me a little, but mostly made me feel rather pleased with myself. Yes! I am one of those people who bake when my acquaintances are ill!  What an amazing, empathetic, wonderful person I am. I did not go so far as to credit myself with James’s survival and subsequent return to health, but I allowed for how the chocolate probably helped.

I had made the decision to act on my compassion. A little. Well, not so very much actually. Almost literally the crumbs from my kitchen. Yet I now understand the level of gratitude around a few cookies. Today similar small gestures from the people around me stun me with appreciation of my own. I understand it now. My friend makes enough extra soup so that I can have lunch for three days. My coworker orders the annual holiday craft for my students without bothering me with the details. Another friend texts to see if I need anything at Trader Joes. “I’m going later, what can I get you?”  These moments stick.

Cipro toxicity isn’t like cancer. It isn’t something that people already understand to be a struggle. Like many chronic conditions, it can become invisible to those not suffering. It is easy to ignore something (or someone) who disappears from daily life, without any official medical diagnosis. So easy in fact that this is many people’s natural inclination. To ignore or minimize. This was my inclination.

On the best days the gratitude I now feel for small acts of kindness can seem a fair trade for the unawareness that formerly accompanied our good health.  The rarity of these acts makes them more powerful. Many people who know our story ask my husband how he is, but more often people don’t. Ever. I suspect these people do care (or at least I am deciding to believe they do). So what is the disconnect?

From my own experience, reaching out to help anyone in need takes an ability to look beyond, briefly, the ever present squawk from the needs of your own life. That was me.  Since my husband has been sick I have heard from many people about their own struggles. How did I not notice my sister has been fighting through horrible digestive issues? How did I miss my friend having constant headaches for four months (after taking Cipro, by the way!)? How did I miss my coworker’s father passing away?

When I did used to look beyond my life, I would often be immobilized by anxiety. There is a real courage involved in moving past the fear and discomfort of saying something wrong. In the past I lacked that courage. I justified with thoughts that generally began, “I don’t want to remind her of….”  Really? Did I think there was a moment that she had forgotten that her father had died, her husband had cancer, her head was pounding, whatever? No. It may hide for a moment but she always knows it’s there. What she does not know is that I remembered it’s there. And that I cared. It is the rare person who can push past these obstacles and offer something anyway.  It is the rare moment when they do.

I am also grateful because I believe acts of compassion, small as they may be, give me a glimpse into the very best selves of those around me. My father and sister could not be more supportive. My aunt has been lovely. Our closest friends have rallied throughout. Although I already knew this information about my family, many of the friends I have chosen in my life are turning out to have a depth to them that has not been apparent to me before. Perhaps this was always true and I just never had occasion to see it. Or perhaps this is something that my friends are deciding about themselves, in the same way that I am deciding about myself. Maybe with every decision we make there is an associated change in ourselves. I don’t know. I do know that the way this has deepened my feelings for these people is as if, from the mountain, I thought I was looking at the edge of a lake in the distance. But now after climbing a little higher, it turns out it is the beach of an ocean. What a dazzling view.

Since my husband’s illness began 6 months ago, every person in my life has been presenting me with an unintended gift the moment I started paying attention. The gift of example. Everyone has and is modeling the kind of person I want (and don’t want) to be.  Who do I want to be when the people around me are in need?  Do I want to be the person who texts from the grocery store?  The person who takes over chores without being asked? Or the person who is so unsure of what to say that she says nothing at all? (How many times have I been that person? Too many to count.)  It’s an obvious decision once you’re aware of it. It’s a choice that I did not even know I was making before this experience. Non-action is a decision. Generally it’s the worst decision.

I have come to believe more and more that it is our actions that define us, not our thoughts, our intentions, or even our feelings. Still, I wish I could go back in time two years and smack the feelings right out of myself. The silent self-satisfaction over a chocolate cake… how very shameful. There is no way to go back and offer to babysit, or cook a meal, or shop, or just ask (frequently) how things are going, and what can I do for you today to help? Or better, just do something that needs to be done, without asking. I can’t go backward and do that. Most disgraceful for me is that cancer is a very “visible” disease and I did my best to not see it. There is only one way to atone. Open my eyes for the rest of my life, and act on what I see, and even what cannot be seen. It is not a coincidence that every time I see James, he asks if there is anything he can do for us. My husband is sick and I am here now. Life is full of decisions. Today I am deciding to be grateful for the chance to have a do over. From now on I get to decide to be the kind of person I always hoped I was.

 

What Can I Do To Help?

Hormones Matter is unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research, and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. And perhaps most importantly, contribute.

To support Hormones Matter and our research projects – Crowdfund Us.

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License to use Creative Commons Zero – CC0

This post was originally published in December of 2013. 

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