last updated October 2015
I was never a healthy child.
Had it been recognized back then, I would have been diagnosed with PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, an autoimmune condition where infections trigger the body to attack the basal ganglia in the brain. I’ve had OCD since at least five-years-old, Tourette’s Syndrome and Migraine Disease since equally young ages, and was born with Primary Immunodeficiency Disease (PIDD).
But the majority of my problems began almost immediately after getting a Hepatitis B vaccination in early 2000; it was preservative free. I now know that over 56% of people who get M.E. post-vaccination, get it after a Hepatitis B inoculation (ME Association Survey Results, 2010). During the next two years, I suffered from constant dizziness, constant nausea, and repeated infections, until in August 2002, I got “the” infection: The one that triggered myalgic encephalomyelitis.
It was a Friday, around noon, when I began to feel unwell. The next two days passed with mild cold-like symptoms, and I figured by Monday I’d be back to normal. However, Monday morning arrived and I awoke with dizziness; I assumed my “cold” had given me a sinus infection. But several rounds of various antibiotics did nothing for me, and I showed a temperature of 96.7, as is custom for severe viral infections. Eventually my initial “cold” symptoms started to fade, but what emerged in their place were new symptoms that refused to subside. The classic muscle weakness that accompanies M.E. began within days, and has stayed with me ever since. Later, I began having constant, terrible muscle pain and showing all the signs of fibromyalgia, a crippling pain syndrome brought on by trauma to the nervous system (such as an infection, car crash, or the onset of another disease).
I saw numerous specialists and tested negative — often twice — for everything as serious as Addison’s and simple as Allergies. A trial run with a steroid injection gave me immeasurable relief from the inflammation that was wrecking my body…until it wore off. Within four months of that fateful infection in August 2002, I was diagnosed with “Chronic Fatigue and Immune Dysfunction Syndrome,” or CFIDS, now commonly known as CFS. A month after that, a rheumatologist diagnosed with me Fibromyalgia Syndrome (FMS, or FM). The advice? There is no cure, nor treatment, but you’ll be fine.
I was unable to leave my house except for doctor visits and the occasional visit to a friend, for the next three years. Once the disability applications were started, I was eventually “validated” by being granted disability payments, after a two-year fight. Like most, I was denied at first. However, on the day of my appeal hearing, I collapsed outside their elevator, and couldn’t continue talking to the judge after I finally made it into the room. I suppose that helped validate that this sickness limited every aspect of my life.
I could never adequately describe the types of symptoms I experienced.
It might be lightly compared to having the worst flu of your life, then, to your absolute horror, it only gets worse. I lost the ability to sleep normally, eat normally, to move without feeling like my muscles were being torn from my limbs. My cognitive abilities — thinking, processing, memory — became extremely dysfunctional. To carry items weighing even a couple of pounds became impossible. I was out of breath after the most minor of exertions. The dizziness was overwhelming and most of the time I walked as if intoxicated. Dysautonomia immediately settled in, and my body could not properly respond to any type of environmental change, be it temperature, or even just standing up. Everything I did — thinking, being exposed to light/sound/smells, or walking — now caused an exacerbation of all these symptoms, but which initially took 24-48 hours to affect me. The crux of the disease is disabling muscle weakness affecting all muscle groups that is caused by exertion and worsens with any and every continued movement. Every activity involving my muscles takes days, weeks, or even longer to return to baseline strength. I experienced episodes of transient paralysis as my damaged mitochondria malfunctioned. Gene alterations triggered by the disease meant I suddenly had to take fractions of any medication affecting my nervous system, or risk being “knocked out” for 16+ hours. The list could go on, to an unimaginable degree.
But perhaps worst of all, besides the fact that all of this accrues within a matter of weeks, is:
No one believes there is anything wrong with you.
The tests that everyone runs, show nothing; the tests that would show something, no one runs. Because I had this “CFS” label, the only things the various “specialists” knew how to recommend were psychological counseling, antidepressants, and exercise. These recommendations are still the Top Three on the CDC’s website for Chronic Fatigue Syndrome. They insisted I exercise — running, biking, swimming — and stop exaggerating my “fatigue”; had I actually listened to them, I would have done irreversible damage to my body. I did not have the language to describe that what I felt was so much more than “fatigue.”
After about three years of this hell, something that happens to many M.E. sufferers happened to me: I began to go into spontaneous remission. Over the course of the next year, most of my M.E.-related symptoms gradually went away, leaving me “only the Fibromyalgia” to deal with. Four years after the onset of the M.E., I was officially in remission. I went back to school to pursue a psychology degree, even if it required many accommodations to offset having a chronic pain disorder. But with the M.E. symptoms out of the way, I was able to walk much more, and this exercise helped the Fibromyalgia.
Little did I know “something” had hitched a ride with me that summer, something I wouldn’t find out about until many years later, when it was too late to do anything about it…
During the first five months of classes, I contracted infections left and right. I got a sinus infection, a bacterial ear infection, a cold, and a stomach virus. All of these made me feel atrocious, but were not accompanied by the substantially-impaired ability to recover that happened while I was still experiencing full-blown ME. Yet after only my first semester, I had already begun to relapse.
I started having migratory-type pain that started in my knees, ceasing my ability to walk on its worst days. This new pain responded to anti-inflammatories, which I found odd at the time since fibromyalgia does not (as it is not an inflammatory condition). In the following months I also began experiencing excruciating vice-like headaches in the back of my skull at an alarming frequency; fevers at regular intervals; and extreme fatigue. I would later figure out these to be my first signs of having chronic, disseminated Lyme Disease, a far-too-common infection transmitted by ticks which spreads throughout the entire body when untreated.
Ten months after the M.E. had gone into remission, I contracted a viral ear infection that, without exaggeration, made me want to die. After that, my relapse was complete, and the M.E. returned full-force. Once again I was wrought with severe muscle weakness, dizziness, and what is known as “post-exertional malaise,” the (admittedly poor) term coined for our unreasonable flare + extended recovery period from even minor activity. Shortly after, once again spending hours and hours in bed, I made the revelation that changed everything.
I found out the truth about “CFS” and ME.
Suddenly everything I had been through made so much sense: The illness onset, the course the disease had taken, how long each stage took to occur, the timing of my remission, why no one in my “ME/CFS” support groups understood what I was talking about when I explained my unique symptoms, even the time of year I fell ill: I was a textbook case of this illness known as myalgic encephalomyelitis. Instead of researching “CFS” or “CFIDS,” I began researching M.E., and by doing so, got clarification for all the little things that never added up whenever I read about Chronic Fatigue Syndrome as it is defined by the CDC. They never added up because I didn’t have “chronic fatigue syndrome.”
Finally I knew I wasn’t crazy. Finally I knew that thousands of others experienced exactly what I did, how I did, and finally had an answer for why I had barely anything in common with other “CFS” patients except fatigue. In addition, I found out the history of both illnesses, including the political “drama” that surrounds the international debate to call them either distinct entities or the same disease.
“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.
The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.
Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.
However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”
Myalgic encephalomyelitis was the disease that had always existed, triggered by a viral infection and characterized predominately by muscle weakness and nervous system dysfunction; chronic fatigue syndrome was a title the government created to study people with unexplained chronic fatigue. I began to understand why some of my doctors thought they were interchangeable; I began to understand how anyone could possibly claim that exercise helped my disease; and I began to understand why research on my disease was getting absolutely nowhere. If these two very different illnesses are combined and studied under the same umbrella, research will not reflect anything but a mixed group of people having only “chronic fatigue” in common; they may not contain even a single person with M.E. at all. (You can read more about how these conditions differ by visiting the links at the bottom of this site, and clicking here. I also feel it important to mention that I discussed this all with my doctor, and that my medical history, physical findings, and lab results confirm a diagnosis of M.E.)
New knowledge in hand, I was finally able to seek treatments that were actually relevant, which included the immediate addition of Coenzyme Q10/CoQ10 to my daily regimen. This protects my muscles from damage, slows the appearance and progression of M.E.-related heart failure, protects against neurodegeneration, and is one of the main treatments I cannot be without. (I use Vitaline brand–available under many product names–as this is the one that has been studied and proven to be neuroprotective.) Even so, it’s not a cure, and as more damage has accrued over the years, I eventually needed to add daily L-carnitine Fumarate in 2009, then D-ribose in 2014. The accelerated progression of my symptoms following any cessation of these medicinal supplements is nothing short of terrifying. Without them, I would be battling paralysis on a daily basis, a reality many of my friends actually live with due to their complete lack of support in managing this lifelong disease.
I cannot recall the exact date that my Fibromyalgia disappeared, but gradually, after having the condition six years, I realized that I no longer suffered from its trademark symptoms.
I had no more chronic, deep aching in all of my muscles and tendons (the muscle pain of M.E. is related to exertion and lactic acid); I no longer had IBS; and I no longer had trouble sleeping, or waking up 10-20 times per night. Imagine my surprise when I found out that this, too, is a very common occurrence specific to M.E. (The Nightingale Definition of Myalgic Encephalomyelitis, 2007). But I continued to decline for the next two years, still yet unaware of having contracted Lyme disease, and also unaware that in the summer of 2008 I had contracted at least three other destructive infections, unable to fight them off in my immunocompromised state: Two strains of bartonella, after sustaining hundreds of flea bites via an infected cat, and Mycoplasma pneumoniae, from the children of a family that came to stay at my house during a hurricane evacuation.
These additional infections sent me spiraling into decline at an unprecedented rate. None of them gave me any acute immune reaction to let me know I had contracted them, but sliding under the radar, their effects on my nervous system began immediately. I began experiencing everything from facial palsy to the beginnings of dystonia to severe muscle spasms that brought me to the floor. My sleep schedule became consistently reversed. Chest pain, chest pressure, and arrhythmia became constant. The Postural Orthostatic Tachycardia Syndrome (POTS) I had dealt with off and on with the M.E., had become severe to the point that I could not stand up but for a couple of minutes, exacerbated by the fact that I was now anemic and battling daily dehydration. I tried attending university from home in a last-ditch effort to complete my degree, but after dropping from a 4.0 to 2.5 GPA the following semester, the reality that I would need to drop out finally caught up with me. In a matter of eight months I became bedbound and unable to care for myself at all, forced to call my family to come get me from my home to stay at theirs indefinitely.
It wasn’t until Fall of 2009 that I realized I had a bunch of peculiar symptoms and symptom patterns that did not match M.E. After being bombarded with information about Lyme disease just about everywhere I turned, I remembered a tick bite I acquired three years prior. (But “there’s no Lyme in the South!”) I anxiously set out to be tested, asked specifically for a Western blot and, as per usual, requested to see my results. Only one band showed up — band 41 — but I knew this was enough, coupled with my exposure, abundance of left-sided symptoms, and monthly symptom flares, to seek out an LLMD, or Lyme Literate Medical Doctor, for more investigation.
I began a trial treatment for Lyme disease with doxycycline after just a few weeks, and although I didn’t leave the house for the next three months, I starting getting my life back.
I was able to stand up again, breathe well again, and had “lots” of energy–at least in comparison to being bedbound–even if I was still hindered by M.E. The joy was short lived, however, after what would be the first of countless complications in my quest-to-heal from what by then had become late stage neuroborreliosis, what Dr. Robert Bransfield calls “a disseminated and progressive encephalopathy.”
Within four months, I ended up in the ER from a severe flare of an unspecified bacteria. This hampered my immune function so much that I developed candidiasis seemingly everywhere, a fungal infection caused by an organism all bodies have but which can become an opportunistic infection under the right conditions. I was forced to stop my antibiotic therapy altogether while my body fought back. This cessation of doxycycline resulted in an immediate flare of my latent bartonellosis infection, marking the beginning of us even realizing I had this infection, as its typical presentation had been masked by the Lyme disease.
Still, feeling the improvements from the doxycycline, I returned to my own home with every intention to finish my degree and get on with things, thinking I’d conquer the candidiasis within a short time and be back in treatment soon. I was completely unaware of how quickly that idea was about to fall apart.
I remained unable to restart my treatments even after every trick in the book.
With the unrestrained infections now rapidly progressing, my fatigue increased by the day, and I developed full dystonia on the left side of my body. After another four months had passed, I once again experienced a severe infection-related relapse. Everything that had improved with the doxycycline was back, and then some: The chest pain, chest pressure, dysautonomia, arrhythmia, muscle spasms, uncontrollable dehydration, and now pleurisy. In a devastating blow to my independence, I contacted my family once again, this time knowing I would have to move out of my home completely.
I arrived at “my new home” the next day and immediately went to the the nearest clinic, where, within minutes, the doctor called an ambulance to take me to the Emergency Room. With a heart rate over 180+ bpm and an oxygen saturation of just 80%, my organ function was compromised, and because of this my doctor put on home oxygen therapy. I then began requiring a wheelchair whenever I could be out of bed, which, at that point, was literally only minutes at a time. I was effectively bedbound. And that is when I made this blog.
As the infections worsened–the Lyme disease, the bartonellosis, the mycoplasma, the candidiasis–so did the ME. Research has shown that, like with AIDS, it does not matter which combination of infections you acquire with this disease, they all contribute to the same outcome: Illness progression. But one good thing that happened in the midst of this was being retested for Lyme Disease through IGeneX laboratories: This detected multiple bands — five of them! — in contrast to the mere one band that showed with my previous Western Blot. This is because (1) I had previously been on and then stopped antibiotics, which stirred up more antibodies, and (2) IGeneX tests for over 20 possible reactivities, while the CDC version (which was never designed to be a diagnostic test) only checks for the most common thirteen. Similar problems gave me false-negative bartonella tests, for which I also finally tested positive later. Despite the circumstances, it felt amazing to be validated after so many doctors didn’t believe me, merely due to my inability to produce adequate antibodies.
In total, it took nine months of antifungal therapy, culminating in months of Ketoconazole and Sporanox, to finally beat the candidiasis into submission. I was then supposed to have stopped taking the ultra-high dose probiotic I’d been on to help battle the candidiasis intestinally. And I did…until two weeks later when, in a moment of foggy brain, I took it out of habit as I’d been doing for the previous nine months. This caused an extremely rare septic-like reaction to the probiotic supplement, and was perhaps the most frightening thing to ever happen to me. It was one of those experiences where the medical professionals speak in hushed tones outside your door instead of in your room. When I asked to go home after six hours of infusing liquids and other drugs into me to stop the fluid loss, their rationale for letting me leave was literally that I was still conscious. My main point: Yes, you can take too many probiotics, and taking high-dose probiotics can be potentially fatal if you are immunocompromised.
Once stabilized, I finally resumed antibiotic therapy in January 2011, after a full year of not being able to take them. We started slow, but because the infections had progressed so much while off treatment, it was only six weeks before I found myself hospitalized again for five days from a severe herxheimer reaction, another life-threatening systemic response that causes inflammation wherever the infection is dying. I presented with having something akin to seizures, but after several weeks of additional doctor visits and symptom charting, the true cause turned out to be autonomic neuropathy, caused by the Lyme disease but aggravated by trying to kill it.
After a hellish couple of weeks in recovery from that, I finally started to see that treatment was working: I was out of my wheelchair, able to walk on my own, and sent back the supplemental oxygen therapy, for I no longer needed it. I continued to make improvements month by month, and a year later, in January 2012, I completed treatment for bartonellosis. Or at least I thought I had…
My doctor and I then made an attempt to begin Lyme disease treatment, but something very unexpected had now happened.
Like someone with cancer might become unable to handle any more chemotherapy, I found myself unable to tolerate any more of the very chemicals I needed to eradicate the deeply-embedded infections. The toll of treating candidiasis, bartonellosis, and others had proved too much for my body, and what started as a few months off to recuperate, turned into my worst nightmare: I became incapacitated by anything we tried against the Lyme disease, antibiotic or otherwise, and just a few months later, the bartonellosis started coming back out of remission. I was beside myself with the knowledge of what these infections would eventually do, all the while knowing that this time, treatment was no longer an option. Every fiber of my being told me that if I tried to continue treatment in spite of what it was doing to me, the treatment itself would kill me long before the infections. My writing, my personality, and my life took on an entirely new direction as I learned to cope with this reality.
It took everything I had to stand firm in my decision not to treat these progressive infections, because trying to cure myself was all I knew how to do. I continued to take care of myself in every way possible in lieu of treating-to-cure, but it took several weeks of lamentation for me to really understand it wasn’t the same as suicide. The first time my immune system awoke to realize I had untreated bartonella, I was bedbound within eight months; the next time, within just four months. I knew from these past experiences that anything activating my immune system would start my accelerated decline, so for the next two years I did everything I could to avoid all things–especially antibiotics–that might activate my immune system. Because of this, some things progressed slowly while others remained somewhat latent.
I focused on enjoying my life to the utmost while I could, learned to be peaceful, and for a while got involved with advocacy again, generally having a good run of the initial energy-burst many experience after stopping toxic medications. I didn’t truly hit the metaphorical wall until a year and a half later when a further relapse resulted in constant pain in lymph nodes scattered around my body, followed by eight weeks of worsening white spots on my tonsils that eventually began moving down my throat. With no positive cultures to anything recognizable, my immunology team decided it was the result of an overburdened lymphatic system and weakened immune system, and used this in combination with my diagnosis of Primary Immunodeficiency Disease to try qualifying me for intravenous immunoglobulin (IVIG) replacement therapy.
A week later I began this non-invasive treatment in hopes of slowing things down.
And it actually worked.
The pain and overwhelm in my lymphatic system resolved within days of my first infusion in October 2014. And after an initial, terrifying flare of all my bartonella symptoms, they are now completely gone. It remains to be seen whether the Lyme disease can be cured or subdued once it has reached this stage, but I remain hopeful. Treating other conditions along the way such as MTHFR (methylene tetrahydrofolate reductase) deficiency, Vitamin D deficiency, and joyously encorporating massive changes to my diet and lifestyle has afforded me even more improvement. I’m no longer living daily in survival mode, and have the privilege of focusing entirely on my continued recovery. We’ll see how this goes.
This site started as my health diary to track symptoms, progression, and progress during the years of grueling treatments to save my life. Gradually it changed into my place to talk about all things related to chronic illness and disability.
Now, it’s my place to express my creative path to wholeness, particularly through the lens of acceptance, authenticity, and Buddhism.
So hi, I’m Kit. I’m an optimistic realist, writer, photographer, artist, Unitarian Universalist Buddhist, LGBT+ spoonie. Thank you for visiting my site, where I try to look for the colours in the darkness…