The Crazy Disease Called Lyme
by Amber Davis
I am a member of a Lyme disease support group where medical consultants are jokingly called insultants.
Except it’s not a joke.
We are the considered the pariahs of the medical world. The fakers, the cheaters, the crazy, the insane. Those patients you want to just ‘go away’. Because they have an illness that makes no sense to you. So they must be crazy. And it certainly cannot be Lyme. Because that’s an arthritis-like illness that affects you only directly after a tick bite, and is easily cured with a couple of weeks of antibiotics. It doesn’t look like this.
I fell ill close to seven years ago now, with symptoms so debilitating I could no longer take care of myself. At age 28, at a time I was pursuing a PhD in political science, I moved back in with my parents, after years of feeling exhausted and followed by a sudden collapse. I could not stand light, I could not stand sound, I could not follow a normal conversation. I could no longer read, or follow the story of a television series. I no longer had the mental capacity or energy to decipher a recipe, or the organisational skills to cook dinner. I was too exhausted and overwhelmed to make it to the shops for an errand. I slept most of the day, and often could not stop crying when awake. I sometimes could not distinguish between sounds in the outside world, which hammered me, and sounds inside my head. My brain was fried. I vegetated. My brother – later – described me as a ‘dead bird’.
When I went to see my GP – quite late, because honestly I was too sick to go to the doctor (and I come from a family where you don’t go to a doctor unless you are already dead) – he wrote ‘surmenage’ on his notepad. In other words: ‘stress’. But my symptoms concerned him enough to refer me to a neurologist.
The neurologist was alarmed when I described my case: “Why didn’t you come to see me two months ago?!” I couldn’t say anything about the family thing, as my mother was sitting next to me, so I shrugged. He ordered an MRI and an EEG to be performed. Although he never spoke the words he was obviously worried something was seriously wrong: a brain tumour, or bleeding in the brain maybe? Some exotic form of epilepsy?
Both the MRI and the EEG came back clear. (By now I know that if they had looked at the EEG data differently, they could have seen patterns that showed a physical and infectious, rather than a psychological cause for my collapse. It would be the first step to finally receiving my Lyme diagnosis – six and a half years later.) When they performed the EEG, which involves measuring your brain waves while looking into bright flashing lights, I had some sort of ‘attack’ and meltdown right there. I collapsed into a sobbing heap, though naturally, I tried to hide it, as I am just British enough to suppress anything that might be considered remotely embarrassing or of hindrance. I didn’t manage, and I was a sobbing heap anyway. The nurse was concerned. “This is what I have,” I told her. “I cannot cope with stimuli of any kind. Looking into the lights triggered my meltdown.” She looked at me and said: “That’s not possible.” During the next meeting with the neurologist he gave me an all clear: “Everything is fine,” he said. “You are healthy. Good luck finishing your PhD.” Right. If only I could read at all. Or get out of bed, for that matter.
I must give the man some credit – he did add that if my symptoms did not abate, I should come back to see him. I didn’t. I already had too much experience with the medical world that could never explain my various, always-shifting symptoms, that had plagued me all my adult life, that I had given up on them, mostly. I had heard ‘there’s nothing wrong with you’ so many times, in response to always bizarre and always debilitating complaints. I stopped sleeping for eight months when I was 21. At the same time my arm and my neck froze and the shooting pains in my back got so bad I could barely lie down in bed without a shriek. I could no longer open a carton of milk because my hand was in agony. Repetitive stress injury, the diagnosis was. But no amount of physical therapy helped. When my physical therapist tried to adjust my spine, I would again have ‘attacks’ immediately afterwards, and I would end up so poorly I could not make it home. A friend who lived down the road picked me up once when it was very bad, and I lay on her couch shuddering and sobbing until the absolute worst had past. She too, is a doctor: “You’re just very sensitive,” she told me. “It’s just the way you are built. You react to everything.”
And that’s what I thought for years: “I am just too sensitive. Maybe I can’t cope with life like other people do?” The odd thing was that my symptoms were ever shifting and they normally would resolve at some point. I’d take extremely good care of myself: sleep, eat well, and do things like yoga and acupuncture, and after weeks or months I’d feel well again. See: there was nothing wrong with me. I was just sensitive and maybe a bit crazy. I must be a bit crazy if they can never find anything wrong with me. And why go to a doctor, if actually what is wrong with you is that you are sensitive and a bit crazy?
Another of my crazies was my reaction to antibiotics. When a doctor would prescribe antibiotics to treat one of my ailments I’d get even sicker. I would have to stop the antibiotics after a week or so, because I could no longer function and felt close to death. Sensitive to medication too! When would the sensitivities ever end? (Now, with the Lyme diagnosis, this reaction makes sense. Lyme bacteria are one of the few – together with their cosy cousin syphilis – that exhibit a so-called Herxheimer reaction when they are killed: they release endotoxins that make you much sicker than you were before until the body has cleared them.)
After my sudden collapse I spent years trying to get better, and not understanding why it didn’t happen. I saw countless psychotherapists, physical therapists, stress-coaches, massage therapists, shiatsu therapists, acupuncturists, dieticians, and god knows who else, who would eventually fire me when they too could not make sense of me. At some point I thought I really was going crazy, when I ended up in an Indian Ayurvedic practitioner’s office who suggested my issues were related to trauma in past lives and could be removed if she were to do rituals for me for a month. It would cost a mere €17000. But that’s a small price to pay to get your health back. It didn’t even seem too unreasonable at the time. At least she knew what was wrong with me.
Over time, with hard-core healthy living, slowly, incrementally, I was improving. My fatigue was still out of this world. Enough to make me want to cry and give up while I was fixing breakfast, because I was just too tired to pour the tea or open the jam jar. Enough to be a complete recluse, because conversations were too much for my poor brain, and being around people would knock me out for days. Enough to not want a new day to arrive, because getting through it would be a Herculean task. But. But! Sometimes, here and there, I had a window of clarity. Sometimes I could think again. And how I loved to think. So, after three years of not being able to do anything at all, I did what the neurologist had suggested: I decided to finish my PhD. In one thirty-minute segment a day at first, which would be followed by a day of being completely wiped out. But over time, the minutes became hours. Maybe two or three, for a couple of days a week. Enough to get something done. Yes, crazy indeed. But I did it. I finished my PhD.
Sidenote: When my PhD thesis was short-listed for a prize out of a very thick pile of theses my craziness was once again confirmed. How could I achieve such a thing with a brain not functioning? Impossible. Reading was still a difficult task, it felt like my brain had disintegrated, and I finished the thesis struggling through my paragraphs, without being able to grasp the whole argument at once. Making an argument hurt in an almost physical sense. But I did it anyway, because it is what I do. Nevertheless, how my thesis ended up a coherent piece was beyond me. I was entirely baffled! They must have made a mistake with the nomination process. Could not have been my thesis! That, or maybe my illness wasn’t real or severe? Maybe I am a functioning member of society after all? But I can’t leave the house for more than an hour or two at a time without collapsing into an over-sensitised, awake but near-comatose state afterwards?! That is not normal. Is that normal? I look normal. Maybe I am normal. Just crazy. And I don’t know the difference.
But it wasn’t until a year after my PhD defence, six years after falling ill and after having recovered to a limited extent, that the real crazies arrived. From one night to the next, I could no longer sleep. I got maybe two or three hours a night if I was lucky. Not only that, I was overcome with a complete sense of terror. It felt like I was being attacked. Except there was no attacker. I sat there, shaking in my bed, night after terrified sleepless night, and I knew something was terribly wrong. I got attacks of sea legs during the day: I would feel the world swirling around, as if the ground had disappeared. The crying spells of the early days of my illness reappeared. So did the sounds in my head. So did the blurred vision. I could no longer concentrate on the written word, even for ten seconds. I stopped functioning. Oh my god, I thought. It is starting all over again. My dad came over and I told him that I would rather have my arms and legs chopped off than go through this ordeal again. In fact, I would far prefer it, in the most literal of ways. At the time, I begged my boyfriend to please, please help me jump off a very tall building if things would remain as bad as they were. I am capable of enduring a lot of suffering, but at some point it becomes too much to live through. (Poor man. He is still with me after all those years. He thinks I am ‘fun’.) I thought I had emerged from hell, albeit only partially, but now I feared I would have to face it all again. I was slipping into the abyss, no matter how frantically I tried to keep head above water.
The attacker, I know now, was the evil fucker called Lyme. It was an inside job. Just not in the way I could have ever imagined. The first clue came when I decided to have my brain checked out at a neuro-therapy centre. I had heard they could identify stress-related brain damage using EEG technology, and I thought: well, if I am not cut out for living in this world because I am too sensitive to handle normal life, and if I have terminally fried my brain in the process by trying, I want proof. I want research done, and I want evidence. I want to see the cold hard data. And if that is indeed the case, if I am that unsuited to normality, I will accept my fate and lie down on the settee and will somehow come to terms with vegetating in a state of exhaustion and panic and despair for the rest of my life. Maybe I’ll get a cat to keep me company.
The neuropsychologist said it was not impossible that my symptoms were the result of stress-related brain damage. That, and maybe I had acquired an anxiety disorder of sorts. But, he said, let’s not theorise – let’s measure. When I came back the next day, he said he had never seen a brain map like mine. Anxiety: check. Slowed brain processing: check. Extreme fatigue: check. Hyperawareness: check. High creativity (potential craziness – I might be making all of this up): check. But then: “The Delta wave patterns you have do not correspond with a stress-related disorder. This is a pattern we see with people who are physically ill. I don’t think your anxiety is the primary cause of your problems, I think it may be a secondary effect. In fact, your brain map does not correspond with any known psychological, psychiatric or stress-related disorders. It looks nothing like it.” He got back to me a couple of days later, after he had consulted with colleagues: “Naturally, it is impossible to say from an EEG what the physiological causes of your problems are. But from the literature: it looks like an infection, and one of the more likely options is Lyme disease. You may want to get that checked out. And if indeed it is Lyme, antibiotics will help you get your brain back to normal.”
Lyme disease. That couldn’t be right. I googled. What I found: Lyme disease is an illness you get immediately after a tick bite, characterised by arthritis-like symptoms. I had had tick bites, but that was close to twenty years ago. And I didn’t have swollen joints. I couldn’t possibly have Lyme! But if he said it was an option, I was going to check it out. Working hypothesis. Not one I particularly believed in. The checking it out turned out rather more difficult than I had envisioned. (Cue: this is where the insultant bit starts.)
I went to see my GP, who refused to order the Lyme tests at a specialised Lyme lab the neuropsychologist had recommended. “These lab tests,” she said, “are not something I endorse. These private labs make money off patients.” She frowned and continued: “I don’t think you have Lyme, but we can get you tested at the local hospital if you absolutely insist.” I absolutely insisted. But I also absolutely insisted that I get two separate tests done. Normally Lyme tests are performed in a tiered manner: an ELISA first, followed by a Western Blot if the ELISA is positive. I had done my research and had learnt that in long-term cases like mine ELISAs were highly unreliable (by now I know that ELISAs are highly unreliable in the first place). Would it be possible to do the tests separately? She seemed out of her depth, and said: “If you want that you’ll have to call the laboratory yourself.” So I did. I called them and asked whether they could do both tests. “It’s not possible,” they said. “It’s not the protocol.” I didn’t much care about the bloody protocol. Please, please do both tests. The ELISA alone will not do. “We can’t do it,” they said. “We only do Western Blots, in cases when the ELISA comes back positive.”
So, what was I to do? I could get the ELISA test done, but honestly, I could just as well flip a coin. Moreover, I was not convinced it was Lyme. Maybe it was something else. Couldn’t be Lyme! So I decided to track down the doctor – anywhere – who would know most about the biomedical causes of complex and vague illnesses. It was in this foreign doctors’ office, thousands of euros of tests and four months of agony later, that he told me: “I see many patients with vague complaints, and complex and overlapping pathologies. But your case is unambiguous: You have Lyme disease.” A culture test had shown Lyme DNA in my blood. My symptoms corresponded to late-stage Lyme disseminated in the central nervous system. He suggested a hard-core protocol with intravenous antibiotics, for at least a number of months, followed by more oral antibiotics.
In the months between my latest free fall and the diagnosis, the bacterial friends in my brain had had a party. I could not sleep, I could not think, I was in an acute state of panic, so much you know. But then the internal shaking started. Then the feeling of vibrating and being on fire started. Then the tremors started. Then the pressure in the chest appeared. Oftentimes there was nothing much to see on the outside, but on the inside I was being roasted. I was being attacked. My therapist, who was normally quite charmed by my Alice in Wonderland qualities, was concerned when I sat on her couch sobbing and shaking and panicked and falling apart once again: “I know you don’t want to hear this, but I think you might benefit from seeing a psychiatrist. I have seen you poorly, but I have never seen you like this. Maybe medication will help.” I did not believe for one second that might help. But I tried. I was so desperate I was willing to try anything: tranquillizers, beta-blockers, sleeping pills, anti-depressants, as well as countless other pills and potions and supplements: you name it I tried it. I turned into my polar opposite: a pill popper. As expected, with my sensitive crazy nature, nothing helped and everything made me worse (I ditched the psychotropic medication after a single pill – not for me thanks.) That is, until in a final act of despair I ordered a herbal tincture for Lyme. I still didn’t believe I had Lyme, but it was worth a try. One hour after I took the tincture my symptoms calmed down somewhat for the first time in months. It could not be. Lyme.
After I had received the Lyme diagnosis and for the first time self-identified as a (gasp) Lyme patient, the day arrived that I was warned about my imminent death if I proceeded down the dangerous Lyme path I had embarked upon. When I went to see my GP (same practice, different doctor) with the inch-think medical folder the foreign specialist gave me, that contained not only the results of the blood test that said Lyme, but a wealth of other evidence pointing in the same direction, as well as evidence that ruled out other possible diagnoses, he was not amused. “I don’t see how foreign doctors can test things we can’t and I am not going to write a referral for you to see a doctor locally to discuss treatment for Lyme disease,” he said. “I will absolutely defend evidence-based medicine here.” Evidence-based medicine? I thought. What evidence? What about the tests you won’t do? What about the evidence on the table? He went on: “You are not going to find a doctor in the country willing to help you with the treatment your specialist suggests.” What? No one will help me? Where is this conversation going? But why? He explained: “Let me ask you: If you die as a result of antibiotic treatment as prescribed by a foreign doctor, who is going to be legally responsible?”
If I die?
Did he just say that or am I going crazy? At least if I die I can go to heaven, and won’t have to deal with idiots like him. “Would you at least be willing to have a look at the foreign specialist’s report? I could come back another time to talk it over and discuss what I could do next,” I said. Nope, not really: “I am busy enough as it is. I hear that you’re not feeling one hundred per cent well, but I don’t think Lyme has anything to do with it.” On my way out, he added: “I had a feeling from the very start this conversation would end badly. Sometimes you have patients who accuse you of not listening to them. But we don’t have to end on a bad note, do we?” No. Let’s be friends. Give me a call whenever you want to hang out. And, if I decide to go ahead with antibiotic treatment, you can come to my funeral. Be my guest. Have a front row seat.
What he was willing to do, earlier on in the conversation before he started going on about the person who would be legally responsible for my death, was give me the name of a local clinic that administered the type of intravenous antibiotic treatment the foreign specialist had suggested. Privately, expensive, and without insurance coverage, of course. I googled them. They had been closed down for some weeks earlier that year by the Healthcare Inspection, as they did not pass routine hygiene tests. So that’s where my GP would prefer me go, rather than seek out a regular specialist in a mainstream hospital. I had officially entered the Lyme underground.
The Lyme underground is a fun place. We hang out on the Internet and we discuss Lyme specialists who we don’t call by their full name because anything we might say might cause them legal problems, we discuss where to buy antibiotics and herbal medicine online and how to get it into the country, we discuss which new treatment to try, how to deal with symptoms and side effects, and where to travel to next in our quest for health. When we think we might be dying, we ask the group: are we dying? And the group either responds: no, that’s normal, you have Lyme. Or: yeah, we think you might be actually dying, you should get yourself to a hospital ASAP. And afterwards there are stories of the most unwell amongst us, who need urgent medical care because they are having seizures or other acute terrifying problems who have learnt not to tell the medical staff at the hospital they have Lyme disease, because having Lyme disease means you are crazy, and will get you back out on the street as soon as they can possibly get rid of you. As long as you don’t mention the L-word medical care is more forthcoming. When someone is in despair we try to cheer them up by virtually holding their hand. We remind each other and ourselves that the absolute worst of it will pass. And we do a group hug.
We also discuss our adventures in the world of the medical mainstream, the place we so wish we would be seen and treated, but which seems to be ruled by a different class. That of the arrogantly ignorant: the insultants. After my clash with my GP I decided I was not going to subject myself to any more abuse. I am sensitive, you know? These things hurt. I would weigh my options and pick my battles. And research the hell out of everything in an attempt to find the best Lyme doctor on the planet if need be, who would hopefully make me well again (I found him. Unfortunately fully booked, years ahead. It’s a sellers’ market, this chronic Lyme business). I would not subject myself to needless aggravation and injury.
The problem with insultants is that they proved difficult to avoid. My circle of friends, or rather, acquaintances, is full of them. In the beginning I was naive. I thought that, because they knew me, they would give me the chance to share my story. That they, because they knew me, and they knew I have a head that is mostly screwed on right, they would listen. That they, because they knew me and knew I am an academic with an embarrassingly impressive list of credentials, they would take me seriously. Of course, I am not a doctor. I do not pretend to be. But unfortunately, when no one in the medical world is willing to take responsibility for you, who else is left other than yourself? I thought my medical specialist friends would understand.
I was wrong.
Whenever I felt well enough to put my heels and lipstick on and go to a dinner or a party, I would be asked: “How are you?” and I would tell them about my foreign venture. Mistake. Instead of the sympathy I was hoping for, the medical friend would squarely side with my GP. Why did I seek medical help outside of the country? Why did I not accept my condition was vague and untreatable? Why did I accept this crazy diagnosis of Lyme? Their questions weren’t questions. They were accusations. It appeared they had no real interest in hearing my answers. Instead, they would tell me they were hesitant to believe that Lyme, in this chronic form, exists. Was I sure I had an infection at all? It all seemed a little too far out.
But their bias and prejudice is not what enraged me most. What enraged me most is that they forgot to be my friend. They could have said: “It sounds outrageous and it sounds like you have a lot on your plate. Let me fix you a drink. Cute dress you’re wearing, by the way.” And I could have replied: “I don’t understand any of it either. It’s crazy this whole Lyme thing, isn’t it? Shall we dance?” Instead they chose the role of the dismissive doctor. The insultant. The one who doubts you and wants nothing to do with your crazy theories and doctor hopping. An internist friend joked with his psychotherapist wife after explaining he does not believe in chronic Lyme: “She is the worst type of patient. Highly educated. Vocal. And doesn’t take no for an answer.” OK, now I really need a drink. Make it a stiff one. And please, somebody dance with me, because I don’t think I am going to survive another minute of this conversation.
After a couple of such encounters I decided to mostly keep my medical journey to myself. Until an opportunity came along that seemed more important than my own sensitivities. A senior figure in one of the larger academic hospitals had heard of my case, and we spent some time emailing. “Why” he asked, “are you going abroad for treatment? Why aren’t you getting treatment here?” He was curious. He seemed genuinely interested. Here was a powerful man in a leading hospital asking me a question. An open question. Now, you must realise that being asked an open question when you’re in the business of Lyme is a triumph all to its own. When I shared the news with my Lyme friends, they were as excited as I was: “Wow. He wants to know?! He is interested? That’s about as close to a miracle as you can get in national healthcare. Maybe things are changing for the better, even only a little.” So, I wrote him. I told him about my case. I told him about the difficulties of diagnosing Lyme in the later stages. I sent him links to books and articles, as well as stories of people who had gotten well with the sort of treatment I wished to pursue. People who had been ridiculed and dismissed by their regular doctors, like me, because their illnesses did not make sense to them.
He got back to me after a couple of days. He had spoken to the head neurologist of the hospital: “Many people who think they have Lyme disease,” the neurologist had said, “don’t actually have Lyme disease. They may have psychiatric problems. Lyme is just an excuse to get a diagnosis. Any diagnosis.” The neurologist couldn’t have given a better answer to the question of why I was pursuing treatment abroad.
In the meantime I had found my Lyme doctor: a German veteran in the field who had been treating the illness exclusively for more than twenty years. When I sat down opposite him in his office, another many months later, and after he had spent close to four hours listening to me, deconstructing my medical history, as well as examining every joint, organ and reflex in my body, he said: “The foreign specialist was right. There is no shadow of a doubt you have late-stage neurological Lyme disease. The testing tends to be unreliable, and serves only as one indicator. Lyme is a clinical diagnosis. The problem with the illness is that any of the symptoms, on their own, do not necessarily point to Lyme. It’s only when you recognise patterns of symptoms that you can diagnose this disease.” In short: Lyme disease is not a disease for reductionists, and not too compatible with modern medicine that focuses on one symptom, one organ system, one test, one diagnosis, one cure. He went on to say that I was in good shape for someone who had had the illness for so long, and that I did not exhibit any of the more severe and potentially irreversible symptoms such as nerve damage. “I do not want to discount the severity of your complaints in terms of their effect on your daily life, but I wish all of my patients were in your condition.”
He asked what I had done in the past years and months to improve my plight. I told him about my healthy living boot camp style. I explained about my anti-inflammatory diet: no sugar or other simple carbohydrates, no alcohol, limited dairy, a litre of freshly pressed vegetable juice daily. I told him about the herbal tinctures I was taking. Through the Internet – doctor Google again – I had found an American herbalist specialised in Lyme. After my initial random success with the herbal tincture, I had decided to book a phone consultation, and with her protocol of more than fifteen different herbs and supplements, personalised to address my specific symptoms, the absolute worst of my symptoms had receded. The tremors had gone, the anxiety had gone, I no longer had the desire to jump off buildings, I slept better, my mental clarity and energy improved, and on most days I was well enough to work from home for an hour or two, maybe a bit more. I saw people now and then. I went to parties and dinners every once in a while. I was far from well, but I was no longer scrambling around in the valley of agony. He had been impressed with my muscle tone during the musculoskeletal exam. “Hot yoga,” I replied enthusiastically. “I go five times a week. It’s doing yoga postures in a heated studio for an hour and a half at a time. You drip with sweat. I love it. They say it’s good for the immune system.” My doctor seemed both interested and amused: “I haven’t heard of it. Some of my patients do the craziest things to get well. But whatever you’re doing that helps you, please keep doing it.”
Another month later I started antibiotic treatment. Even a relatively low dosage sent me into outer space. I lost my mind: my friend the Herxheimer reaction had arrived. I sat on the settee too spaced out to string a sentence together, and I no longer answered the phone: conversations require complex brain activity. It wasn’t really happening. Not that I was too unhappy – I just sat there feeling sedated, intoxicated. I forgot the time and spent hours gazing into space. I could, once again, no longer follow a recipe, or put together a shopping list. I did not have the organisational skills to do the simplest tasks around the house (which wasn’t too inconvenient as I am not much of a housewife to start with. My boyfriend complained, as I was not lifting a finger, and said I should not play the illness card. “But I really am ill, darling. I remember your name, but that’s about it. Doing the laundry is not within my current range of capabilities. Maybe it will be one of the longer-lasting symptoms.”) I knew what was happening and tried to keep a sense of humour about it. I’m tripping, I thought. Some people take drugs to feel like this. Or maybe, this is what dementia feels like. The only truly terrifying moment was when I felt suddenly disoriented. I didn’t know where I was! And that was at home! It only lasted a couple of seconds, but the intensity of disorientation came as a shock. I had heard about it from other Lyme patients, but as with most symptoms you can’t really know what it’s like until it happens to you. I debated not going to yoga class because I might get lost. It’s a five-minute walk just across the bridge from where I live. The most interesting thing that happened is that I for the first time got ‘classic’ Lyme symptoms once the worst of the neurological symptoms calmed down. Every muscle and joint in my body cracked and ached: here were the ‘arthritic symptoms’ every doctor looks for in this disease. I was in pain. Everywhere. This is Lyme. The disease that always surprises you. There’s always a new, fun, debilitating symptom around the corner. Before it disappears temporarily or morphs into something else, making people think you are crazy and making things up.
So, here I am. I am three weeks into open-ended antibiotic treatment and I am not dead yet. Will it help? I think so, yes. Will it cure me? I hope so, but likely not. Will I become asymptomatic? That, would be an absolute miracle. It is my only prayer, my only dream. Please, please, please, make me well again. (I have a few back-up requests in terms of clothes and shoes and Chanel lipstick. Oh, and maybe the ability to have a career, a child, and fully enjoy fiction again. But honestly, I realise it’s a lot to ask. I can do without if need be). Yes, I know people who have completely recovered. One of them is a PhD student who did not get better after her four-week course of a single antibiotic, which is the mainstream protocol for treating Lyme disease. She fell further into illness for months after her regular treatment stopped. She too knows the valley of agony that has become my second home. The doctors said she was untreatable. She had had the standard course of antibiotics, and that should have fixed her. If it hadn’t fixed her, it couldn’t be Lyme! It certainly couldn’t be an active infection. More likely that she suffered from post-infectious autoimmune issues, and there was nothing they could do about it. My Lyme doctor, her Lyme doctor, begged to differ and put her on a prolonged course of multiple antibiotics. Two years later she was fully well again. She has been off antibiotics since, and she considers herself fully recovered.
Others I know have not been quite that lucky, but they have improved greatly on long-term antibiotics. One case, eerily similar to mine, is of a woman who crashed while writing her PhD. She, like me, did the unimaginable and finished her PhD while in the midst of the disease. She, like me, has now started an online business because it allows her to work from home, whenever she can. She, like me, was left to her own devices as mainstream medicine could not understand what was wrong with her. The diagnosis she got: chronic fatigue syndrome. She tells me about the nights she would wake up in pain and frightened to her core, convinced this disease would finish her off. Five years after she fell ill, through chance, by chatting with another patient in the chronic fatigue specialist’s waiting room, she heard about Lyme disease and decided to investigate. In her country, Canada, like in mine, chronic Lyme is not treated. In fact, in Canada doctors who treat chronic Lyme are prosecuted, and their medical licenses are under threat, because they dare go outside mainstream protocols. So she, like me, travelled abroad, in her case to the United States, to find a doctor and get treatment. Two years of antibiotics later, and she tells me she is about 80% well. Of her list of more than fifty symptoms only two remain. I think my guardian angel sent her to cheer me on. Whenever I doubt there is hope for me, whenever the symptoms and the suffering and the knocks and the defeats get too much to handle I think of her, my Lyme twin. I think of our parallel lives: she is more than two years ‘ahead’ of me, and who knows, maybe I too will be so much better in two years time. I have just got to hang…in…there.
Even on my darkest days I know I am one of the lucky ones. My doctor tells me the stories of patients who are so much worse off than I am. He told me of the patient whose light and sound sensitivity, a symptom I am all too familiar with, was so bad that she would have to be blindfolded during the daylight hours. She spent her days in a psychiatric hospital, drugged to the eyeballs to make it through the day. My doctor got her out of there. Now, on antibiotics, she no longer requires blindfolds. She still wears sunglasses, but she can get out of her bedroom again. That, my doctor tells me, are the small miracles of life.
My belief in miracles keeps me going. But truly, all of medicine needs a miracle when it comes to Lyme disease. We need to remain vigilant, always, when it comes to our blind spots, and frankly, mainstream medicine with its over-simplistic Lyme protocols, outrageously inadequate testing and diagnostic methods, and dismissive doctors is not doing a very good job. A short lecture on some of the things that go wrong:
Yes, this disease is a tick-borne illness, but no, sometimes you don’t fall ill immediately. The immune system can suppress the disease for months or years, if it is strong, and you may only collapse once you hit a stressful period in your life that takes the immune system down. Lyme bugs love that. In my case, I did fall ill after my tick bite, but the connection was never made. My GP at the time thought it was something to do with my hormones and prescribed a different birth control pill. I recovered mostly, until my crash many years later.
Yes, Lyme often presents with arthritic symptoms, but no, its main symptoms are not necessarily arthritic in nature. The reason everyone seems to think this is the case, is because one of the first and (unfortunately) leading scientists in the field, the person who set the diagnostic criteria for the disease, is a rheumatologist. The disease criteria have more to do with his bias than with the clinical presentation of the disease. Specialised Lyme clinics often use symptom lists with well over a hundred symptoms, that when all put together show patterns that may lead to a clinical diagnosis. Lyme likes the joints, but it also likes the nervous system, brain, skin, and heart. Lyme likes all the best bits of us, unfortunately, and doctors need to catch up with this reality.
No, testing is absolutely not accurate, but yes, it makes sense to include more than just the ELISA and the Western Blot to diagnose the disease. These serology tests turned out negative for me, once I got them done, a phenomenon that is described in the scientific literature as ‘common’ for people with the disease, but ignored in the medical protocols. But my culture test (PCR of the blood) is positive. So are my lymphocyte transformation tests. Plus I have a list of fifty-odd symptoms that add up to Lyme. Plus I suffer from a Herxheimer reaction when I take antibiotics. Plus I have an EEG that shows abnormalities corresponding with Lyme disease. I have this stupid disease. We need to develop a test that tricks it, tracks it down, and allows for better diagnosis.
Yes, short-term antibiotic treatment, as the mainstream protocol prescribes, is often sufficient to cure acute cases of Lyme disease, but no, it is not sufficient for about 30% of acute cases. For chronic cases, short-term antibiotics are seldom going to cut it. Lyme bacteria can persist despite short- (or even long-) term antibiotic treatment. Again, this phenomenon is described in the scientific literature, but ignored in medical protocols. Long-term antibiotics are no panacea, but it is better than doing nothing. People get better. Not always, not always fully, and there is no easy protocol to follow. But there are brave, compassionate, excellent doctors out there who are doing a good job in getting people back to functioning again. We need doctors to start working together to share their knowledge and help us, instead of insisting there is nothing they can do.
Yes, taking long-term antibiotics has serious risks associated with it, but are you seriously going to suggest these weigh up against losing your mind, your body, your health in its entirety? I lost my home, my job, my income, my social life and my independence. I do not know whether I will ever be well enough to have even the beginning of a career or a family. Lyme disease can be transmitted from mother to child (again, described in the literature, ignored in the protocols), so even if I do get well enough to be able to take care of a child there are tremendous risks involved. I know people who have unknowingly passed it on to their children. Their stories are any parent’s worst nightmare. And I know people who have lost even more to this disease: their partner and even the custody of their children. Without the financial support network provided by a spouse, and unable to work, they often have no financial resources to get treatment of any kind. The physical realities of Lyme disease are stark. The social and financial tolls are unreal. And the emotional suffering I cannot even begin to describe. We are in pain. It is a heart-wrenching business, Lyme disease. It destroys lives. Why not give us a chance to get better? Which side effects could possibly be worse than the disease we have?
May is Lyme disease awareness month, which is why I wrote this essay. I normally try to steer clear of the topic, as everything to do with it causes me distress. A friend emailed me a newspaper clipping a few weeks ago about the increase in suicides among Lyme patients. I told him to never, ever, send me something like that again. (He replied: “It was just FYI.” Which I thought was funny, despite everything.) I have absolutely no intention of topping myself, but it hits too close to home. I understand why people would take their life. I know what it’s like to have your body, brain and life fall apart. I know what it’s like when the world seems to give up on you. Unfortunately, most of my Lyme friends do too. We need a better perspective. And for that, we need you. We need the world to know that the way Lyme disease is defined, diagnosed, and treated is severely lacking. If you are our family member or our friend or our neighbour we need your support. We need you to know about our struggles to get diagnosed and treated. We need you to know about our suffering. At times, we may need you to hold our hand to get through the crazier and more unbearable patches of this ordeal. We may even need you to open your wallet, as insurance companies tend to side with the four-week protocol, not with the patient who needs long-term treatment, currently only offered at private clinics. If you are our doctor we need you to take us seriously. We need you to open your mind and expand your thinking beyond the current protocols. Most importantly: the crazy disease of Lyme has to go mainstream. It has to be straightened out. It will, I have no doubt, over time. In the meantime, please be nice? Come over to the dark side. Listen to us. Stick up for us. Help us get diagnosed. Help us get treated. And please, I know it’s hard, but could you try to not insult us?
For more information on Lyme disease:
Must-read: Pamela Weintraub’s ‘Cure Unkown’ on the intense controversies surrounding Lyme disease. The politics, the legal battles, the scientific disputes, the treatment uncertainties, the history of why everything Lyme is such a mess. And the heart-wrenching personal stories. I was anxious before I started the the book, as it is such an upsetting topic for me, but so glad I read it. It reads like a thriller. Except, unfortunately, as I know all too well, true. Once I read this book I knew for sure: I am not crazy. I also realised: I may get better. It helped me tremendously.
On the medical side: Dr. Richard Horowitz’s ‘Why Can’t I Get Better? – Solving the Mystery of Lyme and Chronic Disease’. He is the top U.S. doctor I talk about in my piece. For doctors and patients only, this book, I suppose, it does get quite technical. Very good book on why the current protocols do not even come close to addressing the problems of Lyme disease, plus an alternative approach. Unfortunately not a prescription that reads: 1 antibiotic pill for 4 weeks, but rather a 500-page road map that addresses the complexities of Lyme. It does not promise a cure, but it promises progress. From what I have learnt about him, he is about the most thorough Lyme doctor currently practicing.
Also on the medical side: Stephen Buhner’s ‘Healing Lyme’ – He is considered one of the leading herbalists in the Lyme world. I consulted with his partner, Julie Mcintyre, who helped me out of the very deep hole I fell into in 2013. Technical book, again, and sound, scientific approach.
If you think my story is crazy, know that it is the norm in the world of Lyme. It came as a shock that my story is typical, not unusual. I was used to being the crazy one, not to being normal! Worse, the situation has been like this for decades. Do you not believe me? Read Amy Tan’s eloquent version of my story here. Or, watch basketball superstar Elena Delle Donne’s story here. Or watch Real Beverly Hills Housewife Yolanda Foster’s story here (I was diagnosed by the same doctor). Or watch this group of Australian Lyme patients’ stories here. Or, get to know my Lyme twin, and read the wonderful Alison Smith’s story here. I will stop, but I emphasise: We are not crazy. We are sick. We have Lyme disease. It will likely not go away with four weeks of antibiotics if it’s been in our system for too long. We need long-term treatment. Open your eyes. Open your heart. Help us.
Finally, there is a terrific film on Lyme Disease: Under Our Skin, but I cannot give a review as it disturbs me too much to watch it. I can manage about 15 minutes before I start crying uncontrollably. The realities of Lyme disease are too dark. I can live it, but I cannot watch it. I have heard from my friends that everyone who loves me should watch this film. So that’s what I recommend if you do, or if you love or know someone else with the disease. You can watch it here.