Second progress report
Firstly, I regained the lost hearing in my left ear after 10 days, a relief as I had read that Lyme-related "sudden sensorineural hearing loss" (SNHL), sometimes resolves and sometimes never does. Then I went through a period of mental fog in which attempts at concentration were futile. Time slowed down and I perceived and thought in slow motion. My other symptoms lessened in frequency, intensity, and duration, but persisted.
Doctor would not give me any more antibiotics. He said I had had enough (two courses of doxycycline of about 2 weeks each, and one 12 day course of azythromycin). I understand his point of view: a free and easy supply of antibiotics means a world full of antibiotic resistant pathogenic micro-organisms. He averred that the normal course was that my symptoms would gradually diminish and finally disappear in time. But that, of course, was something he had read on his official medical intranet, rather than something he had learned from experience. I asked him about my blood tests. The first, done after the second course of antibiotics, was positive. The second, after the end of my antibiotic treatment, was also positive.
I asked: Does this mean The Alien Entity is still in my body? No, it just means that its presence has stimulated antibody production. So what was the point of the post-treatment test? (Here some professional back-peddling couched in waffle padding). So, how can we be sure that the antibiotic treatment has been effective? We can't be absolutely sure, but I really wouldn't worry, so long as your symptoms are diminishing.
I decided not to press the matter further: Doctor had obviously come to the far reaches of his pertinent knowledge. He then did a useful thing: he booked me an appointment with Internal Medicine to oversee my case.
At Internal Medicine I was seen by a pleasant young lady who was quite thorough within the common boundaries of day-to-day, run-of-the-mill medical knowledge and practice, but because of those boundaries, similarly limited. She did explain the tests a little more thoroughly. These are antibody assays which test for one or both of two different kinds of antibodies: IgG and IgM. Once infected, IgG will appear and remain in the blood. IgM on the other hand, will rise rapidly on initial infection and remain only as long as an active infection is present. That is, once the micro-organism is eliminated, it will subside and no longer appear at significant levels. I vaguely remembered this information from my own immunology classes way back in the day. So, I asked...
- What did these two antibodies say in my case? Prior to treatment both IgG and IgM were positive.
- What about after treatment? Only IgG was tested.
- Wasn't that a bit pointless, given that it tells us nothing about an active infection? Yes.
- So shall we test for IgM now? There's not much point. If it's positive, it might be a false positive, and if it's negative it might be a false negative.
- So, if I understand you correctly, you will rely entirely on the evolution of my symptoms...? That is correct.
Uhm... you don't need to be a doctor to realise that this confusion doesn't show the actual practice of medicine in its best or its most rational light. And yet my impression is that doctors themselves (or, so as not to unfairly generalise, many of them) do not notice that, or bother to give it more than a passing thought. What if my symptoms, those which characterised my infection or related to it, persist after antibiotic treatment is concluded, and, just for the sake of argument, my IgM test result were negative? This appears to happen to many people. And this is precisely where, I read and hear, a lot of doctors begin to lose interest.
What is my current condition? I have irregular, mild bouts of the old, familiar toe stabbing, usually the same old right big toe, but occasionally other toes or other parts of my feet. A common site for mild pin-prick sensations are the corners of the nail beds of my fingers, mostly the index or middle fingers of either hand. Odd or what? I have occasional, brief waves of very mild pain through my feet. Overall my impression is that these are diminishing in frequency. Yet it seems that every time I have said to someone that my symptoms are leaving me, they hit me again in defiance the very next day. Is that a physical effect or a psychological one? Who can tell?
There are things I have found to make my symptoms reappear or worsen: getting hot, engaging in strenuous activity, over-exerting myself mentally, dehydration, too much alcohol, too much coffee. And things that make me feel generally better: sleep, sleep, sleep... light exercise, cool weather, drinking water.
I have had to come to terms with not doing things I love, in order to conserve my energy. Principally that means reducing my long, rugged cliff, coast and hill walks. I always have a symptomatic day afterwards. But I will not stop them completely, because they lift my mood. It is ironical that I got Lyme precisely because I love rough and forest walking.
The remaining symptom that troubles me most is a constant, pervasive tiredness, and a somewhat depressed mood. I want my energy back. I feel diminished as a person without it, and that affects my mood. I want my old self back. I hear this is a common refrain from Lyme-affected people.
Knowledge and the great divide
From my doctors I have learned an intriguing fact: that, concerning Lyme disease, there exists a vast gulf between the basic official knowledge in the possession of most doctors, generalists and specialists alike, and the experiences, needs, knowledge and beliefs of their patients.
This, to an extent, is inevitable, and we shouldn't blame doctors for this. The field of medicine is itself so mind-bogglingly vast that no doctor can be expected to know more than the basics about all the diseases they are supposed to keep in their mental inventories. The problem comes when the doctor irrationally believes that what he or she knows is all that really needs knowing, or when, even acknowledging that it is not, he or she is reluctant to find out more. Which, I believe, happens quite a lot.
So, I have learned that there is a body of basic common official knowledge about Lyme disease, and another body of somewhat more in-depth and sophisticated unofficial knowledge. Now there is an intriguing idea! "Official knowledge" contrasted with "unofficial knowledge".
The first kind is in the possession of the Common or Garden GP, and even the Common or Garden Mr Consultant. It consists in the few notes they learned at medical school. This is what it says, in a nutshell:
- Lyme disease is caused by a spirochaete bacteria called Borrelia burgdoferi, borne by ticks.
- It begins days to weeks after a tick bite with a characteristic bulls-eye rash spreading around the bite, high temperature, malaise and joint pains.
- Then other symptoms can develop and become chronic if the disease is left untreated.
- It is easily treatable with a short course of antibiotics.
- That's about it.
The second kind, the unofficial knowledge is a little more difficult to define or encapsulate. It is the knowledge owned by the person who also owns chronic Lyme-related symptoms. It consists of perceptions, experience, interpretations of that experience, and beliefs based on reading, interactions with other affected people, and personal reflection. It has many facets. Here are a few, just by way of example, that are ignored, elude or denied by common official knowledge:
- The range of symptoms that can be "caused by" Lyme disease is almost as wide and varied as the range of unpleasant human experience.
- Many people are affected by constant or recurrent symptoms long after normal antibiotic protocols are completed.
- Effective antibiotic treatment may require courses much longer than the conventionally recommended ones, and repeated treatment.
- Many people are affected by these symptoms after tick bites but in the absence of positive antibody tests.
- Many people experience aggravations of their symptoms in response to various triggers or stimuli, pharmacological, dietary, behavioural or environmental. (Chronic Lyme patients call this kind of phenomenon a "Herx", a term their doctors do not know that refers to a process they do not know of: the Jarisch-Herxheimer reaction.)
- Borrelia burgdoferi can hide in the body, undetectable to the normal blood tests, either by living inside the blood cells for a part of their life cycle, or by forming little cysts around themselves within the person's tissues.
- The toxins released by dying spirochaetes can be taken up and stored in fat cells, and can be released later under certain conditions, causing a bout of symptoms.
- Several other tick-borne infectious microorganisms may be picked up at the same time as Borrelia burgdoferi. They too, can cause unpleasant symptoms and serious illness, but are unknown to or ignored by most doctors. They are not usually tested for.
I wish to state that the fact that I have enumerated these points of both official and unofficial knowledge does not necessarily mean I endorse their veracity. For the moment, I am still too ignorant to differentiate between the true and the false. I strongly suspect that neither of these two kinds of knowledge is the whole truth and nothing but the truth. Both require unbiased critical examination. I intend to engage in some of this in another post, not this one. My objective here has been simply to illustrate the divide great that exists between, on the one hand, the effective sum of medical knowledge as it is applied by the vast majority of practitioners, and on the other, the conceptual corpus of their patients. To be honest, as far as debating concepts is concerned, the average medic is out of his or her league here, compared with the average chronic patient.
What's in a name?
What do we understand by the terms "Lyme disease", "disease" even, and "chronic"?
I ask this because some doctors (of those who, to give credit where credit is due, have at least got as far as having thought about it) deny the existence of chronic Lyme disease, whereas many patients with chronic Lyme-related symptoms vehemently affirm its reality. So it seems to me that as stumbling blocks to mutual comprehension, the concepts, definitions and semantics may be worthy of consideration.
To the medical scientist (and consequently to those doctors of mindsets more rigidly shackled to the principles of modern science) physical "disease" means, for all intents and purposes, "symptoms which can be related to detectable abnormalities in the tissues, physiological fluids or physiological processes of the affected person". Or increasingly nowadays (and controversially), just "the presence of detectable deviations from the statistical norm in the tissues, physiological fluids or physiological processes of a person" even in the absence of any symptoms. ("High" total and LDL cholesterol in an otherwise healthy person is a case in point). What is not covered by either of these definitions is the presence of symptoms without detectable abnormalities - precisely the predicament of many of those who believe they are affected by chronic Lyme disease.
To the medical scientist (and the more rigidly shackled doctors) "Lyme disease" means, for all intents and purposes, "active infection by B. burdoferi". This working definition seems to me to be of little practical value at present. On the one hand, conventional testing practices for B. burgdoferi are currently very imperfect and of limited value. On the other, co-infection by other tick-borne parasites, which are rarely tested for, seems to be common. Until or unless this situation is improved, perhaps it would be better to retire the term "Lyme disease" in favour of a term such as "tick-borne infection". But then, what of chronic symptoms arising from a primary infection?
A "chronic" disease is a persistent or recurrent disease. Many people who believe they have chronic Lyme disease also believe that their persistent symptoms must be attributable to the persistence of the initial infection. Many doctors deny this. I must confess, I can think of several alternative explanations. I have read writings by affected people that the belief in a persistent infection, validated by a positive test result, is felt to be somehow necessary for their mental well-being. That is, if we can prove the existence of an active infection by finding a test that will demonstrate it (never mind the possibility of false positives), then our symptoms are justified. I have the greatest sympathy with those affected by the emotional impact of distressing, unexplained symptoms. But nobody should feel they need to provide concrete justification for very real experiences - and all experiences are "real" -from any kind of moral or ethical standpoint. From a practical one yes, if, and only if, it will lead to appropriate treatment. But we should be wary of our own biases. My position has always been that it is more beneficial in the long term to look in the eye and come to terms with uncomfortable truths than to slumber under comforting untruths. What is needed here is open-mindedness all round. Yes, chronic infection is a possibility. Yes, there are other equally likely explanations for persistent symptoms. We do not yet know enough.
At what point is the disease not the disease? If, (capital IF) chronic symptoms, related to an initial infection, can no longer be explained by the continued presence of those parasites in the body (we will say, just for the sake of argument, that the antibiotics worked and the alien entities are vanquished), what then is the explanation for their persistence? And crucially, in that case, if the infection is no more, is it to be considered the same "disease" as before, or is it a different "disease", one that sometimes develops out of the first one? In a shorter phrase, do we still call it "Lyme" or do we not? And there, I believe lies the dissonance between patients and doctors.
Patients want to say: "I have chronic Lyme disease."
Doctors say: "But you have no active infection now, so it is not Lyme disease any more." If he or she is more aware, he will say, "You have Post-treatment Lyme Disease Syndrome". The doctor, believing this, has no choice but to treat the patient symptomatically. This difference in concept and terminology is the cause of a lot of resentment and entrenched positions. But entrenched positions are exactly what are not needed if we want to get to the bottom of all this. It is an unnecessary argument. We do not yet know enough.
I have spent a little time in the support forums, and have developed positive feelings about them, but with reservations. On the one hand they provide valuable social and emotional support. There's a lot of nice tending and befriending. They can also are useful sources of information, so long as one does not take every piece of advice as gospel. On the other hand, I am a little apprehensive about a certain tendency I suspect exists in us to attach excessively to the sense of group belonging, and to our identity as a Lyme sufferer. A fellow Lymie. The danger is that we begin to identify with our disease. We label ourselves. Once we are labelled we are trapped. We possess and converse in a lexicon of esoteric jargon incomprehensible to the outside world. There is an assumption that we are in it for the long term, which can be a powerful conditioning agent to the newly diagnosed. All this shared social and cultural structure, the edifice we build around our condition, by subtle psychological mechanisms can help to bind us into a state of chronicity. But I want to say, "I wish you well with all my heart, but hey, I'm outa here!"
I do not wish this to be taken personally by anybody involved in online support groups, as indeed I am myself. It is a personal observation, not a criticism. Just a thing of which I wish to be to be a little wary, while benefiting from the practical help and encouraging words, and contributing too, in my way. Dependency, once acquired, is a difficult thing to shake off.
We Lymies tend to attribute all our ailments and discomforts to our special disease. In my case, apart from the primary presenting symptoms which took me to the doctor in the first place, I could cite: general tiredness, depressed mood, heat intolerance, disturbed sleep patterns, and a new difficulty in controlling my blood pressure (my hypertension preceded my Lyme by years, but was until recently under reasonable pharmacological and lifestyle control). Goodness knows there are a great many people with far more chronic, extensive and unpleasant lists than me. Yet the kind of relationship that many of the reported chronic symptoms have with any initial B. borrelia infection is unclear, and remains for the time being a matter of assumptions, conjecture, beliefs.
Lyme disease is rapidly increasing in incidence and prevalence. Climate change has been suggested as one cause of this. Another is increased awareness. Suddenly everybody knows somebody with Lyme disease. A lady friend of mine was out to lunch in London with three girl friends, all of whom told her they had Lyme disease. I have little doubt that many of those who claim the disease do so with solid justification. But it is becoming fashionable, too! Others, with only the flimsiest foundation, will clutch at the straw Lyme offers, as the latest in-vogue disease, to explain any persistent, undiagnosed symptoms. The upside of this raised profile will hopefully be more funds, more research, more knowledge, wider understanding, better diagnostics, improved treatment.
I have made a list of a number of questions which, in another post, I would like to critically appraise:
- First and foremost, I would like to come to an educated guess as to the likely processes behind chronicity. The assumption by many affected by chronic Lyme-related symptoms is that these are due to continued infection. This may or may not be true, or may be true in some cases but not others. I would like greater clarity on this.
- The assumption by many affected by chronic Lyme-related symptoms that any sudden acute aggravation is due to the Jarisch-Herxheimer reaction has, I think, a shaky foundation. Sometimes it is likely to be the correct explanation, other times there are other, equally or more likely explanations. I would like to understand better what is going on.
- There is clearly a problem with testing for B. burgdoferi. Conventional methods come up short. Valid and reliable alternative methods may not be widely available. Other alternative methods may not be any more reliable than conventional methods, or may lack any objective validity at all. I would like to understand more about this.
- B. burgdoferi has been accused of devious methods which enable it to survive attack and avoid detection whilst in the body (e.g. entry into blood cells, encysting). I would like to know whether these mechanisms have been reliably demonstrated, or whether they are simply a part of the folk mythology surrounding a mysterious disease.
If any readers can help me with these questions, I would be grateful. Thank you for reading.
To be continued.