Short version: I live with Myalgic encephalomyelitis (M.E.), and have tested positive for Borrelia burgdorferi (Lyme disease), Bartonella quintana, Bartonella henselae, and Mycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. As of January 2012, I finished treatment for bartonellosis, so that should no longer be a factor!

I was bedbound when I created this journal, but I eventually upgraded to housebound. As of now, I would consider myself partially-housebound. I still use a wheelchair for long trips, cannot drive, and need help preparing meals, but considering the outrageous combination of illnesses with which I’m dealing, I think that to be quite lucky. 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 disabled with severe chronic illness.

Hi, I’m Kit. I’m an artist, universalist, warrior pixie, and optimistic realist. Welcome to my blog, where I always look for the colours in the darkness.

Below you can find an account of how I came to acquire all these diseases, if you are enclined. Thank you for reading, and please don’t be a stranger! I welcome all comments.

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last updated January 2013

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 though I only recently found out about my IgG subclass deficiencies, I have reason to believe I’ve had them since I was a child, due to the abnormal number of bacterial infections I got.

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 50% 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 hearing, I collapsed outside their elevator, and couldn’t continue talking to the judge after I made it into the room. I suppose that’s “good evidence” when you’re trying to explain why your sickness limits every aspect of your 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, and 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 to recover from; by the time you are flaring, you’ve already forgotten what it was that you did to worsen it; you experience temporary episodes of both muscular and neurologically-based paralysis; signals connecting your brain and muscles temporarily disappear; you suddenly have to take fractions of any medication affecting the nervous system, or risk being “knocked out” for 16+ hours. The list could go on, to a disgusting 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 is a very delicate balance when dealing 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, and by August 2006 — four years after the onset of the M.E. — I was officially in remission. I went back to school, even if it required many accomodations to suit the complications of having a chronic pain disorder. 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…

 

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 feelings of near-death and inability-to-recover that happened while I was still experiencing full-blown ME. By the following January, I had slowly begun to relapse, and by the end of that month, 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). During the next few months, I began having excruitating headaches at an alarming frequency, fevers (that, at the time, I didn’t realize were repeating every four weeks), and extreme fatigue. I would later figure out these to be my first signs of having chronic, disseminated, or Late Stage Lyme Disease.

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, I completely relapsed, and the M.E. returned full-force. Once again I was wrought with severe muscle weakness, dizziness, and what is known as “post-exerional malaise,” the (admittedly poor) term coined for our unreasonable flare + extended recovery period from even minor activity. Shortly after this event, in November, 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 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,” if you will, that surrounds the international debate to call them either distinct entities or the same disease. 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. Thus it began to make much more sense about why CFS research was getting absolutely nowhere, and especially how anyone could possibly claim that exercise helped my disease: If one combines these two very different illnesses, research studies will not actually contain people with M.E., but instead include a mixed group of people having only the symptom of “chronic fatigue” in common. The results of such studies, therefore, are going to be terribly construed. (You can read more about how these conditions differ by visiting the links on the right side of this blog.)

New knowledge in hand, I was also finally able to find potential treatments that were actually relevant, which included the immediate addition of Co Q-10/Ubiquinol to my daily regimen. This is the second thing in my life that I couldn’t be without.

 

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 pain 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 occurence with M.E. (The Nightingale Definition of Myalgic Encephalomyelitis, 2007). But I continued to decline for the next two years, still unaware of having ever contracted Lyme disease, and also unaware that, in the summer of 2008, I had contracted two other destructive infections which I was unable to fight off in my immunosuppressed state: Bartonellosis, 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 two infections sent me spiraling into decline at an unprecedented rate. Neither gave me any acute immune reaction to let me know that I had gotten them, but their effects on my nervous system began immediately. I was forced to try attending university from home in an attempt to complete my degree, but after dropping from a 4.0 GPA to a 2.5 GPA the following semester, the reality that I would need to drop out finally caught up with me.

I had begun experiencing a host of new symptoms, 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, even hourly event. The Postural Orthosatic 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. In a matter of eight months I was bedbound, unable to care for myself at all, and forced to call my family to come get me from my home, to stay with them indefinitely.

It was Fall of 2009 when I realized I had a bunch of peculiar symptoms and 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 via 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 weeks, and though I didn’t leave my family’s house — rarely even looking outside! — for three months, I gradually got my life back. I was able to stand up again, breathe again, and had “lots” of energy (in comparison to being bedbound, at least) even though I was still hindered by the effects the M.E. had on my muscle function, et cetera.

The day before Christmas that year, I sustained a severe flare of some (supposedly unidentified) bacterial infection, that not only sent me to the Emergency Room but hampered by immune system so much that I developed a disastrous candida overgrowth; I was forced to stop my antibiotic therapy altogether despite having been on measures to prevent this scenario the entire time I was in treatment. Stopping the Doxycycline resulted in an immediate relapse of my bartonella symptoms, and marked the begining 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 several months and be back in treatment relatively soon. Because I had improved so much on the antibiotics before having to take a break, I felt I would be able to talk care of myself. So, completely unaware of how quickly things were about to fall apart, I returned to my home three months later, with every intention to resume classes and finish my degree. After all, I had dealt with having M.E. before, and felt confident I could come up with enough accomodations to at least live on my own again.

 

But still, I remained unable to restart treatment even after every “trick in the book.”

With the untreated 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 flare just four months after I had returned home. Everything was back: The chest pain, the chest pressure, the severe POTS, the arrhythmia, the muscle spasms, the uncontrollable dehydration, and I had “sporadically” developed pleurisy. I contacted my family once again, this time knowing I would have to move out of my home completely. They drove for hours and picked me up the next day. Upon arrival at “my new home,” 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%). I was soon put on home oxygen and required a wheelchair whenever I was out of bed, which was literally only minutes at a time. I was effectively bedbound. That is when I made this blog.

As the infections got worse–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 showed the existence of multiple bands — five of them! — in contrast to the mere one band that showed with my previous Western Blot. 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. (Subsequent testing still has shown additional positive bands, and I also finally managed to obtain a positive bartonella test, after probably a dozen false-negatives; you just don’t nearly die from something that isn’t there!)

After a round of Sporanox and beginning high dose Vitamin C, the candida overgrowth was finally beaten into submission. But due to the yeast no longer being there, I experienced an unforeseen and extremely rare reaction to my usual probiotic supplement. This was perhaps the most frightening thing to ever happen to me, but definitely serves as proof that one should ONLY take what level of probiotic they need, and not continue taking high-dose probiotics out of habit, like I did: Yes you CAN take too many probiotics, especially if you are immuno-compromised. (You can read about the incident here.)

 

In January 2011, after a full year of not being able to tolerate them, I finally resumed antibiotic therapy.

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. 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, brought on by trying to kill the bugs. It was the closest I’ve ever come to needing a feeding tube. After a hellish couple of weeks in recovery, I realized that at least the treatment was working: I was out of my wheelchair and able to walk on my own, and I 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. My reward for winning that war, was my Life itself.

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. With my immunodeficiencies and very neurologically-oriented, six-years untreated strain of infection, I now have late stage neuroborreliosis. And with my ten-year history of M.E., twelve-year history of just trying to stay stable every single day, and weakened system due to the toxic chemicals needed to kill the other infections, my body has been through a lot. This is not a disease I can conquer forever with a few rounds of treatment. At this point, I will probably never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I was bedbound when I created this journal, but I eventually upgraded to housebound. As of now, I would consider myself partially-housebound. I still use a wheelchair for long trips, cannot drive, and need help preparing meals, but considering the outrageous combination of illnesses with which I’m dealing, I think that to be quite lucky. 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 disabled with severe chronic illness.

Hi, I’m Kit. I’m an artist, universalist, warrior pixie, and optimistic realist. Welcome to my blog, where I always look for the colours in the darkness…

♥ a rainbow at night