last updated December 2014
I was never a healthy child.
Recent research into my medical history would point to me having had PANDAS. I’ve had OCD since at least five-years-old, Tourette’s Syndrome and Migraine 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 the ME.
I remember it was a Friday, and 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, that didn’t happen. 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 began to emerge were new symptoms that refused to subside. The classic muscle weakness that accompanies M.E. began within weeks, and has stayed with me ever since. Later, I began having 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.
I suppose it could be lightly compared to having the worst flu of your life, but to your absolute horror, it only gets worse. You lose the ability to sleep normally, eat normally, to move without feeling like your muscles are being torn from your limbs; your cognitive abilities — thinking, processing, memory — become extremely dysfunctional; to carry items weighing even a couple pounds becomes impossible; you are out of breath with even the most minor of exertions; the dizziness is overwhelming, and you walk as if intoxicated; dysautonomia immediately settles in, and your body cannot properly respond to any type of environmental change, be it temperature, or even just standing up; anything you do — whether it is thinking, being exposed to light/sound/smells, or walking — causes an exacerbation or “flare up” of all your symptoms, that lasts days, and initially takes 24-48 hours to affect you; the crux of the disease, the muscle weakness, is activity-induced, substantial, and takes days to weeks or even longer to recover from; you experience episodes of transient paralysis as your mitochondria malfunction; you suddenly need to take fractions of any medication affecting the nervous system, or risk being “knocked out” for 16+ hours because gene alterations triggered by the disease affect how your body processes medications. The list could go on, to an unimaginable degree.
But perhaps worst of all, besides the fact that these jump at you within a matter of weeks, is that 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 listened to them, I may have ended up even worse than I have now. I did not have the language to describe that what I felt was so much more than “fatigue.” It was a very delicate balance having to deal with one illness that is made worse by exercise (M.E.), and another such as Fibromyalgia, for which exercise is absolutely crucial.
After about three years of this living 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, 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 exercise again, which helped with 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 they were not accompanied by the substantially-impaired ability to recover that happened while I was still experiencing full-blown ME. Yet after my first semester I had already begun to relapse. By the end of January 2007, I started having severe migratory-type pain that mainly affected my knees, ceasing my ability to walk on its worst days. It only lasted a few weeks, but confused me because I had never experienced it before. This pain responded to anti-inflammatories, so it couldn’t have been fibromyalgia (which does not, since it is not an inflammatory condition). In the following months I also began getting excruciating headaches 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 that 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 this event, I made the revelation that changed everything.
I found out the truth about “CFS” and M.E. Suddenly everything I had been through made so much sense: The illness onset, the course the disease had taken and how long each stage took to occur, the timing of my remission, why no one in my 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 other people experienced exactly what I did, how I did, and I had an answer for why I had so little in common with other “CFS” patients. In addition, I also 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, characterized predominately by muscle weakness and nervous system dysfunction; chronic fatigue syndrome was a title the government created for people with unexplained fatigue and other symptoms. I began to understand why some of my doctors thought they were interchangeable, and especially how anyone could possibly claim that exercise helped my disease. It also began to make much more sense that CFS research was getting absolutely nowhere: If one combines these two very different illnesses under the same umbrella, then studies them, research results will not reflect anything but a mixed group of people having only “chronic fatigue” in common; they may not even contain any people with M.E. at all. (You can read more about how these conditions differ by visiting the links on the right side of this blog, and clicking here.)
New knowledge in hand, I was also finally able to find potential treatments that were actually relevant, which included the immediate addition of Co-enzyme Q-10/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 the one thing in my life that I cannot be without. The expedited progression of my symptoms following any succession of its use is nothing short of terrifying. (I use Vitaline brand–which is available under many product names–as this is the one that has been studied and proven to offer neuroprotective effects.)
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; 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, as well as unaware that in the summer of 2008 I had contracted three other destructive infections which I was unable to fight 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 severe storm.
These additional infections sent me spiraling into decline at an unprecedented rate. Because of my immunodeficiency, 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 permanently reversed. Chest pain, chest pressure, and arrhythmia became a daily, often hourly event. 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 battling dehydration daily. I tried attending university from home in an attempt to complete my degree, but after dropping from a 4.0 to a 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, unable to care for myself at all, and was forced to call my family to come get me from my home, to stay with them indefinitely.
It wasn’t until Fall of 2009 when I realized I had a bunch of peculiar symptoms and symptom patterns that did not match M.E., and 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 immediately 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.
I began a trial treatment for Lyme disease (doxycycline) within just a few weeks, and although I didn’t leave the house for the next three months, I gradually got my life back.
I was able to stand up again, breathe well again, and had “lots” of energy (in comparison to being bedbound, at least), even if I was still hindered by the effects the M.E. had on my muscle function, et cetera. The joy was short lived, however, in what would be the first of countless complications in my quest-to-heal from late stage neuroborreliosis.
Four months after beginning doxycycline for Lyme disease, I “sporadically” experienced a severe flare of some (supposedly unidentified) bacterial infection, sending me to the ER and hampering my immune function so much that I developed candidiasis seemingly everywhere, a fungal infection caused by an overpopulation of the organism candida albicans, something all bodies have but which can become an opportunistic infection under the right conditions. I was forced to stop my life-saving antibiotic therapy altogether, because antibiotics worsen fungal infections (despite having been on preventative measures for this scenario the entire time I was in treatment). This succession of doxycycline resulted in an immediate flare of my bartonella-specific symptoms, effectively marking the beginning of me even realizing I had this infection, as its typical presentation had been masked by the Lyme disease.
At the time, I thought I’d conquer the candidiasis within a short time and be back in treatment soon. So I returned to my own home three months later, with every intention to resume classes, finish my degree, and get on with my life. After all, I had dealt with having M.E. before, and felt confident I could come up with enough accommodations to at least live on my own again. I was completely unaware of how quickly that idea was about to fall apart.
I remained unable to restart treatment even after every “trick in the book.”
With the infections rapidly progressing, I gradually became more and more fatigued, developed full dystonia on the left side of my body, and experienced another severe infection-related relapse only four months after I had returned home. Everything was back, and it brought friends: The chest pain, chest pressure, dysautonomia, arrhythmia, muscle spasms, uncontrollable dehydration, and I had developed pleurisy. I contacted my family once again, this time knowing I would have to move out of my home completely. Upon arrival at “my new home” the next day, they immediately took me to the nearest clinic where, within minutes, I was sent to the Emergency Room for tachycardia (180+ bpm) and low oxygen levels (80%). Because of this my doctor put on home oxygen therapy, and I 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 it does not matter what combination of infections you acquire with this disease, that, like with AIDS, they all contribute to the same outcome: Illness progression. But one good thing that happened in the midst of all 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 IGeneX tests for over 20 possible reactivities, while the CDC version only tests for the 13 most common. Of particular importance was the emergence of band 39, which is the most Lyme-specific of all the bands. I finally had a positive Lyme test, even with my lowered ability to produce antibodies. Subsequent testing has shown additional positive bands, and I also finally managed to obtain a positive bartonella test through a specialty lab, after probably a dozen false-negatives from other labs with extremely poor sensitivity. You don’t nearly die from something that isn’t there! Despite the circumstances, it felt amazing to be validated after so many doctors didn’t believe me, just because I couldn’t produce adequate antibodies to infections that were actively killing me.
It took nine months of antifungal therapy, culminating in a round of Sporanox, to finally beat the candidiasis into submission. Now that things were balanced once again, including my intestinal flora, I was 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. I experienced an extremely rare septic-like reaction to the probiotic supplement, and this was perhaps the most frightening thing to ever happen to me. One should ONLY EVER take what level of probiotic they NEED, because yes you CAN take too many probiotics, especially if you are immuno-compromised. Do not continue taking high-dose probiotics if your condition improves, because this can be potentially fatal. (You can read about the incident here.)
In January 2011, after a full year of not being able to take them, I resumed antibiotic therapy.
And because the infections had progressed so much while off treatment, within six weeks I found myself hospitalized for five days from a severe herxheimer reaction, another potentially-fatal inflammatory response. It left me in a state many “Lymies” only read about, despite my doctor and I doing our very best to avoid this very real and dangerous scenario. 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, aggravating by (but not initially caused by) trying to kill the infections. After a hellish couple of weeks in recovery, the treatment was working: I was out of my wheelchair, able to walk on my own, and soon gave back the supplemental oxygen, for I no longer needed it. I continued to make improvement month by month, and 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 the toll of the very-necessary treatment for candidiasis and bartonellosis proved too much for my body to be able to tolerate any further toxic drugs. Like someone with cancer might become unable to handle any more chemotherapy, I found myself unable to tolerate the chemicals needed to eradicate the deeply-embedded infections I had acquired.
This is no longer a disease I can conquer forever with a few rounds of treatment.
With my immunodeficiency disease and very neurologically-oriented, multiple-years-untreated strain of infection, I now have late stage neuroborreliosis, which Dr. Robert Bransfield says “can best be conceptualized as a disseminated and progressive encephalopathy.” And with my twelve-year history of M.E., fourteen-year history of just trying to stay stable every single day after my reaction to vaccination, and weakened system due to the toxic chemicals needed to kill the other infections, my body has been through too much.
At this point, I will probably never get rid of the Lyme disease. And mid-2013, I found out the bartonellosis has come back out of remission. It took everything I had to make the decision not to treat these progressive infections anymore, because trying to cure myself was all I knew how to do. But I am doing my best to take care of myself in every way possible in lieu of treating-to-cure.
In October 2014 I began non-invasive intravenous immunoglobulin therapy (IVIG) in my home, in hopes of slowing things down. So far so good.
While I was bedbound when I created this journal, I eventually upgraded to housebound. As of right now, I would consider myself partially-housebound. It takes a lot of planning to get anywhere. I use a wheelchair for long trips, cannot drive anymore, and need help preparing meals, but considering the outrageous combination of illnesses with which I’m dealing, I think that to be quite blessed. This blog started as my health diary to track symptoms, but gradually changed into my place to talk about all things related to the life of someone living with and disabled by chronic illness, especially through the lens of Buddhism, mindfulness, and acceptance.
So hi, I’m Kit. I’m an Optimistic realist, Artist, Universalist, Buddhist, and Spoonie. Welcome to my site, where I always look for the colours in the darkness…
♥ a rainbow at night