I woke up feeling slightly more rested today, my shoulders and neck even hurting a bit less and allowing me to undertake this written blog post. The one particularly shitty thing so far is that I also woke up quite anxious. In the last few days I had been feeling that internal physical shakiness that accompanies anxiety and today it seems to have finally gotten to my head, so to speak. This, too, is part of the cycle of my illness and I have had to learn to deal with the motions. Feeling anxious and uncomfortable in my own skin (atop the physical discomfort) often quickly makes way for feeling depressed about my situation and I sometimes end up with some delusions.
On days like these, I can easily feel that I am very alone, that all my efforts are not good enough, that I am useless (here at home doing nothing), that I will always be this sick or even that I somehow deserve to be sick. Luckily I have some practice with these impostor thoughts and do my absolute best to stare them in the face and laugh at their expense. I’ve got bigger and better things to do, like this little introduction to what chronic Lyme disease is. The one advantage of anxiety is that it makes my brain sharper and more focussed than other days, so it’s the perfect opportunity to spend some time writing. 🙂
Let’s first have a look at what Wikipedia has to say about Lyme disease, as it is, after all, the number one link appearing after a search and likely the one people will visit:
“Lyme disease (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Borrelia burgdorferi is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer. Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”).”
So far so good, everything seems clear here. Borrelia burgdorferi is a bacteria of the spirochete class, meaning it looks like a corkscrew. You know what else is of that same class? Syphilis. I bet you just went “ewwwww”, didn’t you? Even if most of us know very little about syphilis, it’s one of those things you grew up knowing you wanted to avoid in life. Syphilis is hard to detect and is a great imitator, meaning that it takes on the form of many illnesses. B. burgdorferi is the same.
After a tick bite, some will develop a bull’s-eye rash, the classic sign of possible infection, but it is becoming clearer and clearer that only a small portion of infected people develop this rash. Some will go on to develop flu like symptoms such as fatigue, fever, headache, joint aches, stiff neck, backache, swollen glands, but many will not. If the infection goes unnoticed or is left untreated, the Lyme disease bacteria can settle into the body, infect many organs, go dormant for some time, flare up again and again, and degenerately affect all bodily systems (digestive, nervous, muscular, circulatory, respiratory, endocrine, lymphatic, urinary, reproductive…), can lead to paralysis and eventually even death. That’s pretty darn scary. Especially given the fact that the medical authorities in Canada have denied the gravity of the issue, while our southern neighbours along the Eastern portion of the border, like Vermont, New York, Connecticut, have identified this as a real threat and epidemic.
For some people, a B. burgdorferi infection caught rapidly can often be treated successfully with a short course of antibiotics, no longer than 1 or 2 months. However, others continue to be sick even after completing treatment. Also, many people are not aware of a tick bite and do not realize that the infection occurs, and become ill days, weeks, months or even years later (as yours truly). The long term presence and infection of the illness is what many call chronic Lyme disease. Treating it requires an unnaturally high quantity of antibiotics (I’m currently building up to 5 different ones) taken for many months, ranging anywhere from 6 to 24, or even more. There are also herbal supplements and natural protocols. There are many specialized Lyme doctors who have had great clinical success with thousands of patients. The protocol I am on also includes plenty of good quality probiotics and herbal supplements to help strengthen the body during this fight, as well as a proper adapted diet (essentially the GAPS diet that I have been on for a year already).
Now let’s get back to Wikipedia for a moment. The page’s introduction goes on to explain some basic infection info and finishes on this: “The term ‘chronic Lyme disease’ is controversial and not recognized in the medical literature, and most medical authorities advise against long-term antibiotic treatment for ‘chronic Lyme disease’.”.
This is not only Wikipedia’s opinion, this is a stance shared by the the official medical establishments of both Canada and the United States. Well isn’t that great, I thought when I first got diagnosed and read this, just what I needed after 10 years of being sick: an illness whose very existence and whose treatment is controversial.
However, I rapidly realized I had missed the point and it was actually the other way around: it’s not the illness that is controversial, it is the way the medical system is looking at it that is: doctors are dismissing its existence and most importantly not looking for it! Due to the fact that chronic Lyme disease is a multi-systemic illness, the present medical system is simply not made to help patients like me: generalists don’t know which specialists to send us to (it’s much easier for them to conclude it’s in the patients head and psychosomatic after routine blood work), and specialists are not looking in the right direction (they look to the finger pointing at the moon, not the moon, and they are blaming the finger… sort of, you know).
Are these the reasons why I slipped through the cracks all these years? How many others are in my situation, and for how long? After a month of reading about Lyme disease and watching specials on it, it is clear that this is a big public health issue, so why is it not being better addressed? This, and many other frustrations towards the medical system, will be the topic of many entries to come. But let’s move on for now, shall we?
Here is some much more sensible information about chronic Lyme disease from CanLyme, the Canadian Lyme Disease Foundation. This site provides a comprehensive information source for Canadian Lyme sufferers, such as a page debunking myths about Lyme disease, information about specialized Lyme testing labs in the United States, about treatments, about common co-infections, and tons of other really useful info. If you check out CanLyme’s symptoms page, I have had about 90% of those symptoms and currently have about 85%, in a very real way. It’s no joke. All in all, the entire site is a very good starting point and the information is very well presented and organized.
Unfortunately, even with all this information in hand, there is the enormous issue of actually finding a doctor that is willing to take a patient’s suffering seriously, willing to believe his symptoms, willing to play detective and do the right diagnostic tests (in the States), willing to step outside the medical establishment frame and potentially risk professional repercussions. The doctor must act as a knowledgeable partner in a patient’s healing and must be willing to intelligently test for illnesses like Lyme disease and many other infections and imbalances. The vast majority of Canadians getting treated for chronic lyme disease are doing it out of pocket, easily 50 000$ yearly for treatment, with American doctors.
For 12 years I roamed the desolate corridors of the Quebec medical system hoping to find such help and I found none. Then I realized I had approached the situation all wrong: I actually trusted the medical system to take care of me, or to care about me! Epic doh! And when it failed to do so, I didn’t always fight back, I often just walked away furious, helpless and with my tail between my legs. That has been, I believe, my one truly big mistake in this path.
But you live and you learn, right?
Through much intensive research, my own and Jan’s (always by my side), I found my way to the wonderful world of gut flora health and diet-based healing, which has brought about many positive changes. It allowed me to discover a whole community of health fighters, doctors, naturopaths, nutritionists, and many more, who make it their life’s work to help treat chronically ill patients who have been abandoned by the system. And most importantly, thus far in the journey, all this has led me to my wonderful new doctor, whom I knew to seek out personally.
For the first time in my long life as a patient, a doctor actually shook my hand, looked me in the eyes, smiled with genuine kindness and compassion and said: “How may I help you?”. And he really, really meant to help me. And he listened to me. Really, truly listened. And he heard me. He did not make me feel judged for being sick and having so much wrong with me, he did not doubt the severity of my many symptoms, and he asked the right questions. And subsequently did many of the necessary diagnostic tests. And instead of adding to the weight of a decade’s suffering he made me feel lighter.
In the suffocating world of chronic illness, that has been a much needed breath of fresh air.