This month’s guest blog is by LDUK group member and osteopath, Robert Hale who describes the sense of invasion that often accompanies Lyme disease and as a health professional, gives a unique perspective on becoming a patient. He blogs at A Quack’s Diary.
You are lying in bed, as well as well can be, no worries in your head, just falling off to sleep, when an unseen force approaches you with an invisible thick needle and sticks it deep into the right side of the tip of your right large toe. The pain is excruciating but only lasts for two seconds. You shout and jump up and grab your toe to have a look but there is nothing unusual about it. You search the bed for a spider or bug or something that might have bitten you, but you find nothing. You go back to bed and don’t think much more about it, not realising that this is just the start. Not quite the start. You later realise that that mild, dull pain that has cyclically been appearing and disappearing at the right side of the same toe for the past week, about which you had thought little, was almost certainly the forerunner. I have been having a bout with an alien energy configuration, and this is how it started.
But not how it ended. I was violently stabbed in the same place of the same toe roughly every 6 hours over the next three days. Sometimes it felt like a needle prick, other times like a horrible electric shock, always spontaneous, sudden, and never preceded by any warning signs. This kind of sudden, severe, unpredictable pain is psychological torture. The anxiety of expecting the pain to suddenly attack prevents you from sleeping. During the day while you are concentrating on other things it is easier. But still, sometimes it makes you cry out and jump or hop about. It is extraordinary to me that on one of those early occasions, before I knew the nature of the entity that was attacking me, the pain gave me the distinct impression of a small corkscrew suddenly turned in my flesh.
After those first three days the toe stabbing attenuated and became less frequent, finally disappearing altogether. As the toe stabbing reduced in intensity and frequency, I started feeling other sensations. There were pins and needles in various parts of my body. At first it was so subtle I thought I might be imagining it, but then it increased in intensity so there was no doubt. The irregularity and intermittence of this symptom was striking. It would appear at separate times in a foot, a leg, a hand, an arm, a part of my abdomen or thorax, eventually also my face and head. I also had weird sensations of things crawling on my skin. All these symptoms could affect any part of my body, but only rarely all at once. In general I can say that they affected my right lower limb most of all, followed by my left upper limb, and unmistakably worse at night. One night I lay in bed, worrying, pins and needles raging here and there, and realised that if I focussed my mind on any part of my body, I could conjure up the sensation of swarms of tiny ants biting me on that part.
There were waves or pulses of dullish but somehow “bitter” pain. I hadn’t realised pain can have qualities only describable by adjectives of flavour. These affected my feet, my fingers, my legs, my arms. When you are lying in bed at night these pins and needles, these pulses of dull, bitter pain bring you a sense of apprehension, a sense that something is brewing, even a sense of impending doom.
For a while I was also affected by mild, but clear nerve pain in my left arm and hand: a constant aching, cramp-like pain, together with pins and needles. For the clinicians out there I will say that it was predominantly in the C6 dermatomal/myotomal distribution, but not exclusively.
Then all that went away and I had a few days of peace, before the stabbing pains in my right large toe came back. The excruciating pricks were always on the same side of the tip of the same toe, with occasional lesser stabs elsewhere. Notably, this “elsewhere” frequently included exactly the same spot on the other large toe. Thereafter, there was a repeating alternation between toe stabbing, body wide pins and needles with pulses of dull “bitter” pain, and relatively symptom free periods of up to a week or 10 days. So far, this has gone on over several cycles in a period of about 3 months.
I travelled to the UK for a few days to see my parents. The entity went away. I came back home. The entity returned. I went to Italy for 2 weeks to see my children. The same thing. Is this entity in some way locked into my home location?
The last serious toe stabs happened on a Sunday two weeks ago. I hadn’t experienced them for a while and was becoming confident they had disappeared altogether. Then one morning standing at the wash basin in my bathroom, it attacked suddenly and with intensity, just like the very first time. It repeated itself throughout the day and night with gradually increasing frequency, until it was happening every 5 or 10 minutes, but thankfully also with gradually decreasing intensity. On Monday morning it disappeared again. I hoped for good.
Then a week ago I went deaf in my left ear. The alien energy configuration has decided my interest in learning music must be curtailed. It happened suddenly one afternoon, when I thought that the noise of my mobile air conditioning unit at work should not be sounding in my ear, in view of the fact that it was turned off at the time. By the evening I realised that I was actually deaf, as I could not hear the telephone dial tone in my left ear. Or the automatic answering device’s female voice. Or my clicked fingers if I stopped up the other ear. Or people talking to me from that side, at least not very well. I could hear, with that ear, certain kinds of sounds, but distorted and with much reduced acuity; sounds such as water running from a tap, cutlery clinked together, or the high pitched chirruping of small birds. The air conditioner in my ear changed to the padda padda padda of a helicopter, then the helicopter left and a screaming cicada took up residence. I lost my sense of direction about where sounds were coming from. Noisy environments made making sense out of sounds impossible.
The last day and night the body-wide pins and needles and the waves of dull, bitter pain have returned, with occasional sharp but moderate stabs, but not in my right big toe. Last night the entity stuck a needle into the middle of my back, which made me jump awake and shout.
This is the current state of my bout with this alien energy configuration.
It is a strange parasytic life form which looks a bit like a wiggly worm or the business end of monstrous cork screw, that is when it is viewed through a powerful microscope. It is 15-20 micrometres long, which means that if you magnified it 570 times it would look about a centrimetre long. It is a spirochaete bacteria called Borrelia burgdorferi, borne by ticks, and apparently I have millions of them multiplying inside me. Mine almost certainly come from a tick I picked up on my left lower eyelid, just on the sensitive part where the eyelashes grow, after a walk in the forest in Malaysia.
Borrelia is the infective agent that causes Lyme disease, a disease known as the great imitator, such is the variety of symptoms it may produce and its consequent ability to confound doctors by presenting as other diseases. I do not wish here to write specifically about Lyme disease – see the link above, or this one or this one, for some excellent information if you are interested – but about my particular experience of it, and what I have learned from it.
After 3 days of toe stabbing I saw my doctor, who was bewildered. She sent me out of the room for half an hour while she telephoned colleagues, an internal medicine specialist and a neurologist. Then she called me back in and told me her colleagues had said it was bizarre, but concurred that I should be referred to neurology for assessment.
There are, where I live, three modalities for specialist referral: ordinary, preferential, and urgent. I was “preferential”. I got my neurologist’s appointment a month later. By this time I had been back to “my” doctor and found she was no longer “my” doctor, having migrated. My new doctor is young and enthusiastic. He’s interested. I like him. I do not want a doctor who knows the general medical texbook from page 1 to page 1536. I want a doctor who is a detective and a bulldog. This man seems to have this frame of mind.
My new doctor asks me a question: “Have you had any kind of infection recently?” This brings to mind an idea I had entertained and then discarded. “No”, I say, “But I was bitten by a tick.” Doctor looks at his computer for 10 minutes and starts nodding his head. “It could be”, he says, “There is something called neuroborreliosis“. He is talking about the effects Borrelia sometimes has on the nervous system. I had discarded Lyme disease as an unlikely scenario early on because I had never experienced the typical rash or symptoms of fever and general joint and muscle aches. Then to be honest, I had simply forgotten about it. Doctor wants to prescribe antibiotics but wants the neurologist’s opinion first.
I saw the neurologist 6 days later. He was a useless individual, commanding the exalted position (and salary) of head of neurology at the local hospital. “No”, he pronounced immediately, “It cannot be Lyme disease, because Lyme causes paralysis, it doesn’t cause the kinds of symptoms you have.” (It can cause facial paralysis). This was clearly the one snippet of partial information he remembered from medical school, and as such was his total view of Lyme disease. He didn’t take a history or examine me, or suggest any alternative hypotheses or arrange any tests, or anything else except (hearing that I was anxious, when going to bed, about experiencing sudden toe stabs) offer me a packet of diazepam, a drug used for anxiety. He didn’t want to see me again, at least he didn’t say he did. Instead he asked me if Malaysia was a worthwhile option for his next holiday destination. This man would be better employed tilling the fields. And they call us quacks.
Doctor prescribed an antibiotic anyway, doxycycline, telling me his retired father had advised him that he would have had no hesitation. I felt the effect immediately, the symptoms quickly attenuating to the point where I would have said I was almost cured. I returned to doctor with the good news a week or so after finishing my course of antibiotics. I asked for a second course “just to make sure” and he concurred. During the second course my symptoms came storming back. An overdue blood test confirmed the presence of the alien entity in my blood.
At present I am halfway through a 12 day course of another antibiotic, azithromycin. We’ll see.
I write this as a health professional who has not hitherto suffered a great deal himself from physical symptoms. I have learned first hand some things that I thought I knew. Learning first hand rather than second hand, I have taken ownership of this knowledge. The themes that have developed are anxiety, frustration and irrationality.
I have learned first hand that unexplained symptoms cause anxiety in the person directly concerned and in their loved ones who are in daily contact with them.
I have learned first hand that sudden, unpredictable, intermittent pain is a kind of psychological torture. It is the lack of control, and the waiting for the inevitable but unpredictable unpleasantness that accentuates the distress.
I have learned first hand that you would like people, especially your health professionals, to understand the intensity and quality of your pain, but that there seems to be a wall of understanding which separates you from them, or your subjective experience from any faithful description of it. You would like your health professionals at least to do their best to understand, or even pretend to do so, by engaging in the simple act of listening well.
I have learned first hand that unexplained pain makes you irrational, or should I say, even more irrational. One looks for explanations, and not finding a credible rational one, one considers the irrational to be more credible. Among the less reasonable things I thought or did were:
- Think that the line of tiny black ants running across the headboard of the bed were exerting some sort of psychic ant-bite influence upon my energy body.
- Think somebody who hates me must be sticking pins into a Voodoo doll of me at random moments.
- Believe that a recent meal of tuna carpaccio might have tipped my mercury levels over the edge. (Mercury toxicity can cause sensory symptoms).
- Wear a flip-flop on my right foot every night, in the belief that the pressure of the bit between my toes inhibited the pain. For the same reason I even put an elastic band around my toe at night, just tight enough so I could feel the pressure, but not so tight as to cut off the blood supply. It transpired that it didn’t make any difference. The relief I had at first attributed to this was coincidental with the natural waxing and waning of the symptoms.
I have learned first hand that you can develop psychological techniques to endure pain (will power, distraction, concentration, meditation, slow abdominal breathing). Just as focussing the mind on pain heightens it, focussing the mind elsewhere dulls it and even reduces the probability that it will occur.
I would also like to mention the peculiar phenomenon of intuition. Our minds, I think, can sometimes use perceptions in extraordinarily intuitive ways, resulting in a certain “direct knowledge” of phenomena which would otherwise remain obscure. I am thinking of the corkscrew sensation in my toe and the shape of this organism. Of course it is absurd to think that my sensation was an adequate picture of what was actually happening physically. There was no specific little worm there burying itself into the flesh of my toe. I don’t know exactly how it works but I think it is probable that the sensory symptoms produced by this infection are caused by their influence on the peripheral nervous system more proximally (nearer the spine) than the site of the sensation itself. Nevertheless, that perception was extraordinary.
It is my philosophy in life to try to take lessons from just about everything, negative as well as positive experiences, and this is no exception. Other than the things I have previously mentioned (see “The mind” above), here are some other things I think I’ve learned.
- Causes, triggers and influential factors can be extremely difficult to pin down. What seems to be the case for a while often comes up against contradictory evidence down the line.
- Everybody you know has well-meaning but largely ill-informed advice.
- The expert often is not as expert as he or she would have you believe, or as expert as you would expect.
- Disease cases are not always textbook cases.
- Doctors like to put things in boxes. It is quite common medical knowledge that a frequent symptom of Lyme disease is joint pains, technically “arthralgia”. I do not have joint pain, but my doctors keep wanting to classify my pain as “arthralgia” in the little boxes on their computers. I find this curious.
- There is a lot of information and advice about Lyme disease on the Internet, and among this there is quite a large amount of claptrap and pseudoscience.
- Many Lyme disease patients feel misunderstood by their doctors and by the medical establishment. Science is one thing, experience is another, and frequently the former provides inadequate explanations and solutions for the latter.
- Lyme disease, like a number of other complex health conditions, attracts alternative health gurus like bees to a honey pot. It is its very difficulty and complexity that makes it easy for alternative medical practitioners to sell hope where conventional medicine comes up short of patients’ expectations. Not all the alternative ideas and approaches are claptrap, but I am fairly sure that quite a number of them are. I intend to go into this a little more deeply in another post.