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When is Enough, Enough?

28 Aug

One of my best friends lives out of state and struggles with very similar medical issues. Unlike me, she’s lived with some degree of chronic illness since she was a child. We chat on the phone frequently (sometimes multiple times per day!) and keep each other updated regarding the different things we’re trying in order to improve functionality and restore wellness.

Lately, we’ve BOTH been incredibly frustrated at the lack of improvement despite serious overhauls in diet and supplements. I have severely limited my carbohydrate intake in order to squelch the GI issues that my functional MD and nutritionist suspect are related to small bowel bacterial overgrowth. If the little buggers are in there, they aren’t dying fast enough!!

I have achieved marked improvement with my diet overhauls and supplement regimens. Improving my digestion with enzymes, supplements, and HCl has been instrumental in working with my body to restore a state of wellness. Hippocrates said, “All disease begins in the gut” (of course he said it in a much fancier way that certainly made the concept appear novel and sexy), so it boggles my mind that physicians are telling patients “changing your diet won’t help”. How can all of the processed chemicals and foreign substances be GOOD for optimal health?

My friend has reached a point of decision in her healing journey. Food has always made her feel unwell so she has decided to just say “screw it”. To her, there is little point in dealing with the aggravation and frustration of being so limited in her diet when her health continues to decline. I completely understand where she’s coming from. When is enough, enough? When is it time to say, “This is how my body is, let’s accept the reality of the situation and move on“.  For a recovering perfectionist, this is not an easy thing to do. Move on? Give up? Quit?

During the years I struggled with an eating disorder, one of the major hurdles I wrestled with was the fact that the combination of foods my doctors and dietician were telling me to eat made me feel worse – bloated, fatigued, heavy, and every anorexic’s worst nightmare – fat. Recently, my mitochondrial disease specialist said, “I doubt you ever truly had an eating disorder. I think there was more to it.” In hindsight, I suspect he is right on the money. I remember having insatiable cravings for carbs and sweets as young as 12 years old. Not understanding why and feeling powerless to stop my body from this seemingly out-of-control cycle, I started dieting. Food intolerances and gut dysbiosis can cause a wide range of seemingly unrelated and unexplainable symptoms. When you ignore these symptoms – all hell breaks loose. You start to feel out of control and your health deteriorates. A sick GI tract leads to malabsorption and nutrient deficiency which in turn lead to psychological symptoms such as depression, anxiety, worthlessness, and general malaise. Before you know it, you’re sitting in a doctor’s office being labeled as “depressed” or “bipolar” or “just-a-little-stressed-out”. The vicious cycle begins as you start popping the latest and greatest “wonder drug” (or combination of wonder drugs).

Will I ever truly be able to restore my body to wellness? Today is one of those days where I’m not exactly sure. They say that disease rushes in on horseback, but walks out on foot. Maybe I just need to give it more time. Perhaps the lesson to take away from this aspect of healing is that patience is a virtue and putting life “on hold” until wellness is achieved would be quite a waste of an opportunity to enjoy all that is out there.

In a nutshell…

20 Apr

I have a rather…storied…medical history. I saw my endocrinologist today for a follow up to a major health crisis I had about a month ago. “Ah yes, the mystery patient,” he told the medical student, “we don’t really know what’s up with her.”

Complex.
Complicated.
Mystery.
Unusual.
We don’t know.
I’m not sure.
Hmmm.
*silence*

There are all responses I receive from various members of my medical team or consults because really, who goes from normal-healthy to metabolic-trainwreck in 5 years? It doesn’t even make sense to ME and I’m the (supposedly) well-educated patient!

It started with some unusual neurological symptoms in the fall of 2007, approximately 6 months after I weaned myself off of a cocktail of poison that a less-than-ethical psychiatrist had given me to deal with “stress” and “depression”. Because what college student isn’t stressed and depressed? I was bounced around from neuro to neuro and diagnosed with some weird migraine disorder that morphed into muscle pain, weakness, and overwhelming fatigue about a year later. Unable to pinpoint a cause (or just too lazy to bother digging deep enough), I was slapped with the infamous “fibromyalgia” and “chronic fatigue” diagnoses and offered…you guessed it…more antidepressants! I threw them all away.

A year later I woke up numb on the right side of my body. I had had this before, a weird stroke-like presentation that caused me to slur my words, stumble around like a drunken idiot, and prevented me from feeling whatever side of my body my CNS had suddenly cut off blood flow to. After a few days, I called my neuro, who promptly ordered steroids and told me it was “just a migraine” and “not to worry”. After a few more days of no relief (and the side effects of the steroids piling on), I called my dad (a physician) who pretty much lost his marbles wondering why no one had bothered running bloods or getting an MRI. He made a few phone calls, and nearly 14 days after the symptoms began, I was sitting in Dr. A’s office.

I felt immediately at ease when he seemed to know exactly what was going on. How could this be? Other doctors and neuros had written me off as “stressed”, “anxious”, “depressed”, “mentally ill” and here a well-renowned specialist not only believed me, but thought he could HELP?? He explained that I had something called Benign Angiopathy of the Central Nervous System, a less serious form of CNS vasculitis that was essentially Reynaud’s Phenomenon of the brain. He gave me a prescription for nimodipine, a calcium channel blocker, and within 2 days, I was feeling better. In a week, I was back to my baseline self.

While in his office for the consult, he mentioned that I was rundown a lot. Sure, but I have fibromyalgia, I explained. Without missing a beat he said, “No you don’t. I think you have mitochondrial dysfunction.” I had no idea what he was talking about, but when I went home and started doing the research, I realized it made a lot more sense. The mitochondria are the powerhouses of the cells. If energy production is compromised, the whole body becomes compromised and organ systems begin shutting down which leads to widespread systemic issues. I agreed to bloodwork and a biopsy that would confirm a diagnosis of mitochondrial myopathy, and I was referred to a neurologist for follow up regarding the CNS component.

For about 2 years, things would spiral and then stabilize. Winters have probably been the worst, especially with the snow and cold weather. Then in the fall of 2011, a switch in the cocktail Dr. A prescribes for mitochondrial health threw my system out of whack. I was paranoid, depressed, crying all the time and couldn’t function. Since the regular cocktail was unable to be obtained, I tried to tough it out and for about 3 weeks I had friends on speed dial coaching me through the madness. Fortunately, there was quite a bright light at the end of that tunnel and I emerged with infinite amounts of energy that carried me through the holiday season. I was planning a future and convinced I had been cured…until the old cocktail came back in stock and I had to wean off the power juice. I convinced my insurance company to pay for the power juice and after only a week of being off it, I was back on and ready to conquer the world. There was only one problem, I never fully bounced back from the slump that followed the week off of it. I kept waiting patiently reminding myself that it would take time. It never happened, and at the end of January 2012, my neurologist (Dr. G) sent me for an EEG to rule out seizures. The test was incredibly grueling on my system and I spent nearly the entire month of February in bed.

February brought with it a sinus infection and a round of antibiotics, and that’s when all the crazy really went down. I suddenly couldn’t eat. My plethora of dietary intolerances that I had accumulated steadily over the years suddenly jumped by 3 seemingly overnight. I couldn’t keep down water and all I wanted to do was crawl into a hole and vaporize. Then I went for a follow up with Dr. G where I learned my EEG was abnormal, she was suspecting epilepsy, and planned to hospitalize me for a long-term monitored study. I spent the rest of the day in tears, overwhelmed by the news and wondering how the hell this could be happening. And then I got angry. Really, really angry. Dr. A kept referring to my dietary intolerances as “leaky gut” and “intestinal permeability”. I pulled up the library account on my university’s webpage and started researching intestinal permeability and its causes and treatment.

Fungi, bacteria, parasites, protozoa, stress, poor diet, NSAIDS, aspirin, prescription drugs, antibiotics. The more I read, the more I wanted to read. What had caused my GI tract to stage a coup over the course of 4 years? Could solving the mystery of my intestinal permeability solve the whole puzzle? What if whatever had caused the intestinal permeability was leading to the spillage of toxins or byproducts into the rest of the body and causing the mitochondrial dysfunction? Allopathic doctors treat symptoms – what they can see – but my team was in agreement that my mitochondrial issues were secondary. Secondary to what? I am determined to find out.

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