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Welcome to my blog

Hello. I am iciclehunter and this is my diary. My job title is "osteopath", and my work is hunting for clues, detective work, problem-solving. These things involve reason and science, but are not limited by them. They also involve the eye of experience, and "hunches". Thus, some would regard my activities as those of a quack, a title I assume here with irony. I am writing this blog because I like writing. I am quite opinionated, and perhaps I suffer from a repressed need for expression. I have no particular prior "agenda"; if I have any bees in my bonnet, no doubt they will make themselves apparent by their buzzing. All names and identifying details of any people featuring in these anecdotes have been changed. Thank you for reading.

Wednesday, 22 March 2017

What are experts good for?

I was going to call this article "What is the point of experts?" but I thought better of it. That would be too facetious even for me. The point of experts is quite obvious, but the point I want to discuss here is how well they live up to their raison d'ĂȘtre.

It has long been my observation that in many fields "the experts" are commonly nowhere near as expert as you or I would like to believe, or indeed as they would like us to believe. In fact, of the "professions", the only one I can think of in which the expert is truly an expert more often than not is engineering. That is probably because it is based on the "hard" sciences of mathematics and physics (of the old school, Newtonian variety), which, I am told, are not opinions. And because if they were not, bridges would collapse (sometimes they do) and aeroplanes would drop out of the sky (sometimes they do). But think of the others... accountancy, architecture, business management, dentistry, information technology, law, psychology, economics (most of all economics!), you name it. My own profession, too. Is the expert really all that expert? Too often for comfort, no!

One reason is that most professions, particularly those concerned with human sciences, are dealing with a lot of unknowns, and so opinions and interpretations take the place of facts. Two other important reasons are the way in which "knowledge" is regulated by committee, and sheer laziness.

Take medicine, which is no exception to the general rule (to state it kindly). It is not a pure science, it is an applied science and an art, at the centre of which is the human being. Now, (s)he who says (s)he knows more than a fraction about the human being is a fool. That would be true even if only the physical workings of the body were concerned. But there is a whole area of the human being which is routinely ignored by doctors: the mind. Now, the wise know how to navigate in uncertain waters, knowing that in order to do so one needs to consider all areas of relevant knowledge. These individuals may rightly be called experts, even though of course they do not "know everything". But if one ignores a whole vast field of pertinent knowledge, one doesn't stand a chance.

Another thing one needs to do when attempting to navigate uncertain waters, is to feel comfortable in trusting one's own experience and hunches, something that doctors are increasingly discouraged from doing in favour of applying "knowledge by committee". And a third thing one needs is humility and honesty, in the open admission that one's knowledge is limited. Because without humility, sooner or later you are going to come a cropper. Humility is sometimes in short supply in medicine, particularly in the upper reaches of so-called expertise, where in truth one should be more aware than ever about one's limitations.

Knowledge by committee is a major problem with modern medicine. That means that scientific evidence is reviewed by official bodies, who then publish guidelines for the treatment and management of this or that condition. Increasingly, so-called guidelines are taking on the character of orders, and woe betide the doctor who strays from them. The consequence is that doctors are increasingly disempowered from professional decision making. This is the ugly face of Evidence Based Medicine. It has a pretty face too. It's proponents say that it guarantees that only safe, effective treatments are offered. But it's critics point to the fact that standardised treatment protocols by definition limit individualising treatment, that it favours treatments for which large scale gold-standard research protocols are feasible, that it excludes potentially effective treatments, and that it denies patients choice. But in the context of this post, my main criticism here is that it diminishes medical professionals, turning them into bureaucrats, "experts" in learning and delivering protocols devised by other people. Painting by numbers. This inevitably leads to laziness. Why should I read that research paper? Already from the title I can see that it contradicts the guidelines. Therefore it is of little use to me or anybody else. You see the reasoning? Believe me, this happens.

So, as our example of "experts", what are doctors good for? Based purely on my own impression (which I do not hold to be "the truth"), and offered as such, my assessment is this. 10% of them are good or very good, 20% of them are bad or very bad, and the rest wallow in a wide swamp of mediocrity. In general they are better with acute complaints than with chronic ones. Their worth reaches its peak in A&E and Intensive Care. (There's something about the really critical that focuses the mind, and options become more basic.) It reaches its lowest ebb with some of the loafers working in outpatient specialist care. General practitioners (family doctors) are not what they were. They are comfortable with a restricted range of drugs for a restricted range of conditions. Surgeons range from greedy butchers to exquisitely skilled, highly professional craftspeople, so be careful.

Is this a broadside against doctors? No, it is a general comment about "experts", taking the profession of medicine as a typical example. It is a criticism of the diminishment of true professionalism perpetrated by professional establishments themselves. And it certainly is a broadside against the many loafers and incompetents who coast along in most professions. If you take home one message from this, take this one: don't necessarily trust the "expert".

Tuesday, 21 March 2017

Why do Lyme symptoms become chronic?

A significant number of people with Lyme disease who have been treated with antibiotics according to standard guidelines go on to suffer from chronic symptoms. Why is this? Stephen Harrod Buhner, in his book Healing Lyme (2nd edition, 2015), suggests there are four different potential reasons, all of which may explain persistent symptoms in different patients:
  1. Antibiotic treatment has successfully eliminated the organism that caused the disease (primarily spirochaete bacteria of the genus Borrelia), but damage to organic structures that was caused by the bacteria persists. 
  2. Some people are still infected even after antibiotic therapy. 
  3. The immune response to the initial infection becomes an auto-immune response, that is, the immune system begins to attack the body's own tissues.
  4. Fragments of non-viable ("dead") bacteria remain in the body after antibiotic treatment, maintaining an inflammatory respons from the immune system.
One finds different terminology in the scientific literature. If it is envisaged that chronic symptoms are caused by persistent infection, the term "Chronic Lyme Disease" is often used. If, on the other hand, the view is that continued symptoms are not due to continued infection, one will see "Post Lyme Disease Syndrome (PLDS) or "Post-Treatment Lyme Disease Syndrome" (PTLDS), or some such, instead. If the doctor ignorantly denies the existence of either, he or she will often come up with "depression", "delusion", or some other half-baked psychiatric diagnosis.

Buhner is not just guessing. There are research papers supporting each of these mechanisms. I shall quote some of his remarks verbatim below, and I hope some doctors will read them. If you are a doctor, mark this. Buhner is not a doctor but he is not a quack either: he has done his homework about Lyme, probably to a greater breadth and depth than you have about your special subject, and is possibly one of the most knowledgeable people in the world about Lyme disease.

"I want to be clear here about my own orientation. We have had contact with over twenty-five thousand people with Lyme in the decade from 2005-2015. I have, additionally, reviewed upward of ten thousand peer-reviewed journal papers on Lyme disease, its coinfections, their treatment, and overall outcomes. There is no question in my mind, and none in the literature, that both post-Lyme disease syndrome and chronic Lyme exist. The journal papers, by themselves, leave no doubt for any reader who relies on evidence-based (rather than faith-based) material. The numbers of people who experience either (or both) of these conditions may be a legitimate point for discussion but that they exist is not. I personally find the position of many in the conservative medical community on these conditions (i.e., that they do not exist) to be malpractice of the most egregious sort."

Amen.


Tuesday, 14 March 2017

I've had it with those monkeys - They don't know what they're doing

I've had it with those monkeys. They don't know what they're doing. From now on I'll deal with this my own way. I've just come up against the kind of thing many people with Lyme disease know only too well: the sheer boneheaded stupidity and stubbornness of standardised medical guidelines and (bog) standard medical thinking.

The doctor assigned to my case is a pleasant young lady specialist in internal medicine at the local hospital. I saw her the first time 6 months ago and she was nice enough and seemed competent enough in the little she had to do. At the time my symptoms were improving after antibiotic treatment, so all she wished to do, rightly, was to book a follow up, which was today.

Unfortunately, recently I have had a relapse of my unpleasant neurological symptoms. Doctor was puzzled. I don't blame her. It's a weird, poorly understood disease, not many cases are seen on the island where I live (I have been told I am one of two known cases), and she is young. I don't hold that against her. I prefer the young ones - they're usually less complacent and set in their ways.

I gave her some clues. I told her that the persistence of symptoms after antibiotic treatment of Lyme disease is a major problem; that there are two theories: (a) that Borrelia bacteria persist in the system even after antibiotic treatment - proponents of this theory refer to "chronic Lyme disease", and (b) that Borrelia does not persist after antibiotic treatment, and the persisting symptoms must be explained by other mechanisms - proponents of this theory refer to "post-treatment Lyme disease syndrome" or PTLDS for short.

I told her that Borrelia burgdoferi is known to exist in different morphological forms: free spirochetes, round bodies (cysts) and biofilm colonies, that these different forms have different responses to different antibiotics, and that this may explain why the symptoms of Lyme disease recur after antibiotic treatment. I told her what Sapi et al. (2011)* found in their in vitro experiments: that doxycycline reduces spirochetes by 90% but increases the number of round bodies by 200+%; that amoxillin, metronidazole, tigecycline, tinidazole reduce both spirochetes and round bodies; that tinidazole is the most effective, reducing spirochetes and round bodies by 90%; that only tinidazole is reasonably effective against viable biofilm organisms; that furthermore, their results suggest that Borrelia spirochetes transform into round bodies when treated with antibiotics and transform back into spirochetes when antibiotic treatment is stopped; and that this effect is greater when doxycycline is used. I noted that I had been treated with doxycycline.

I told her that of the many species of Borrelia that can infect humans and cause disease, B. burgdoferi, B. afzelii and B. garinii are the most important, that while B. burgdoferi is more common in the United States, the other two are more common in Europe and Asia. I noted that I probably became infected in Asia, but had only been tested for B. burgdoferi.

I told her that in people infected with Borrelia, coinfections are common, the most common of which are Bartonella, Chlamydia, Mycoplasma and Babesia. I noted that I have not been tested for any of these.

She said how interesting. I apologised for my lecture but pointed out that most doctors were unaware of these things. As an aside, even though some of the information might be arguable in the light of other research, most doctors are also unaware that there is something to argue about. I am very much afraid I blinded Doctor with science. Also, I miscalculated. I had forgotten that national health service doctors are not paid to think, but to follow standard protocols.

Anyway, Doctor said she had to confer with her superior, the head of department, and asked me to wait. I waited for half an hour. She called me back. She told me she had spoken to her boss and read some stuff on the computer (I am assuming she meant the relevant health service guidelines on their Intranet). On that basis she told me that I had received the right treatment and therefore I must be free of Borrelia. My symptoms were left-over neuropathic symptoms, and needed to be treated with specific drugs for neuropathic pain.

I tried to reason with her, noting that what she was telling me was not an open and shut case, and there were strong scientific reasons for believing that doxycycline alone may not be adequate treatment for Lyme disease. But her face was set firm, and she flatly said she was not going to prescribe antibiotics and there was no need for further tests.

I saw the lay of the land, so I told her I didn't want drugs for neuropathic pain, got up and left. I was a bit short with her (not to my credit). What got me in this instance (and there have been others), was not being refused antibiotics - I can understand that choice, if it has been properly reasoned through on an individuial basis - but the complete disregard for the pertinent information provided, which might have made a doctor think, "Hang on a minute. This doesn't fit in with what the guidelines say. Hmmm... let's have a think about this", and the unwillingness to have engage in a reasoned discussion based on science. So that's what they call "Evidence Based Medicine". More like Asinine Based Medicine.

But I do not blame the doctor. She is young, could not go against her superiors, and could possibly be disciplined if she went beyond official guidelines. In time I hope she learns that to make a good doctor she is going to have to learn critical thinking, a healthy dose of scepticism towards "standard protocols", to appreciate that where science is incomplete one has to be prepared to move outside the box, and where personal knowledge is lacking, to do some in depth reading in the interests of one's patient, and to use her capacity for reason.

But I do blame a system - both educational and of health care provision - which in its bovine stupidity trains these positive traits out of young doctors. And I point the finger at her superior - and all like him - who should know better; who in either arrogant stupidity or laziness (I know not which), despite evidently not having had to deal much with Lyme disease, believes that what he learned about Lyme at school, and what he thinks he knows about infectious diseases in general, is complete and sufficient.

Anyway, I'm shot of it. I'll deal with this in my own way from now on.


* Sapi et al. Evaluation of antibiotic susceptibility in vitro of different morphological forms of Borrelia burgdorferi. Infection and Drug Resistance 2011: 4 97-113.


More of my posts on Lyme disease

Why can't I relax my muscles during treatment?

The thing is this: you are lying on the treatment couch and I am trying to move your arm, or your head, or whatever, but when I do so I find it difficult because you cannot “let it go”. When I ask you to relax, you say: “But I am relaxed.” Why is this?

The unconscious inability to "let go" of a bodily part in order to let the therapist move it freely is common and is most usually psychological. It is an unconscious attempt to maintain control of oneself. Fundamentally, it speaks of fear - and its attendants, defence and control.

What fears could attend “letting go”? Fear of revealing oneself, fear of doing the wrong thing, fear of disapproval or non-acceptance? What is being defended? The sense of worth, to self, to family, friends and associates, to society, going back in time to parents, crystallising in the here and now to me, the therapist? I emphasise once again that these feelings are not conscious, but subconscious.

From where would such fear be born? These things can be almost as old as the individual. For example, things such as early perceptions of an over-controlling and/or overly censorious family or cultural environment. That is one common scenario, I believe, but there are of course others: various kinds of past trauma, for example.

The point is, the unconscious resistance to letting go is not necessarily only a response to the here and now, it is a long-ingrained habitual pattern. As such it is impossible not to think of it as part of the problem, even perhaps at times the major part. Therefore, and this is the crucial thing, the therapist's attempts to promote “letting go” are not just a means to allow deeper access for manipulation, they are in themselves an important part of the therapeutic process.

“Letting go” means letting down your defences, which won't come easily. But if you feel you are in an environment of calm, trust, support and safety, it will come gradually in response to coaxing from the therapist. Only by our signals, coaxing, encouragement, suggestions, and illustrations can you begin to recognise how tension feels and how relaxation feels, and how to go from one to the other. It is important that you know that this is part of the treatment and that the therapist's signals to relax are not meant or to be taken as rebukes. Sometimes such verbal encouragement actually makes things worse, as you make ever greater and ever more futile attempts to let go. But we can work around that by using more subtle signals than words, and your "need to please" response will assert itself less and less as trust grows.

Nevertheless, this is just in the treatment room. Will this education in “letting go” remain just a conditioned response to the treatment room, only to be blown away by the blustery winds outside it? Not necessarily: I think its generalisation to the circumstances of the outside world is possible, although it won't necessarily occur automatically, but require on your part some self-awareness, and a willingness and capacity gradually to adjust your perceptions of yourself in relation to the world, particularly in regard to such things as values and what constitutes "threat".

Friday, 10 March 2017

The wind that jangles the nerves

It has become very evident to me that I have relapses of my chronic Lyme symptoms when it is very windy. I have asked myself why should they be exacerbated in windy weather? I can only speculate.

My symptoms are primarily sensory: pins and needles, stabbing sensations, and brief waves of pain which I would describe as not severe but somehow "bitter". Mostly my hands and feet are affected, but these sensations can occur anywhere, or indeed body-wide. Evidently, the functioning of the sensory side of my peripheral nervous system has been affected by this invasion of my body by Borrelia burgdorferi, the micro-organism responsible for Lyme disease.

I think of Vata, one of the three Doshas, or physiological principles, of Ayurvedic (ancient Indian) medicine. Abnormal nervous activity is a symptom primarily produced by Vata. Vata is the principle of movement and activity. (Of the others, Pitta is the principle of heat, and Kapha of mass.) Intriguingly, Vata is the only principle of which the element Air is a component, and wind, of course, is air in movement. Mine is at times storm-driven!

Traditional Chinese Medicine, in contrast, has no element Air. However, it has "Wood", which is said to be associated with movement, activity and wind. Moreover, Wood disturbances can lead to "nervous" ailments and unstable, shifting pain, which characterises my pain very well.

An orthodox doctor who took the time to think about it (a rare thing, these days) might say that a persistent strong or blustery wind could trigger an anxiety response, and that anxiety in itself could be sufficient to bring on symptoms. Especially so if I had become conditioned to expect them owing to one strong past association of the wind with the appearance of symptoms.

Although I don't fully buy this tidy, convenient, utterly rational explanation, I realise there may be something in it. It don't fully buy it because I can predict, by my symptoms, when it is going to become windy imminently. This means that one cannot say it is necessarily the wind that first sparks my anxiety, although it is certainly true that once the wind is blowing hard it jangles the nerves.

Since very ancient times the weather has been observed to affect the mind and health. The wind, specifically, has a long folk association with madness. "Prairie madness" afflicted settlers in the Great Plains region of the United States in the latter half of the 19th century and the beginning of the 20th. Symptoms commonly experienced were depression, withdrawal, changes in character, and violence. The harsh weather conditions encountered were one factor, and some spoke specifically about being disturbed by the wind. Indeed this was the theme of Dorothy Scarborough's 1925 novel, The Wind about a young woman who is driven to homicidal madness by the unceasing wind, the hardships of prairie life, isolation and an unsatisfying marriage.

An interesting article by Bulbena and colleagues (2005), published in the International Journal of Biometeorology, reviews previous research on links between meteorological variables and mental health, and reports on their own attempt to link panic and anxiety to weather variables, among psychiatric emergency cases at the general hospital in Barcelona. The authors report that episodes of panic (but not of non-panic anxiety) were significantly more frequent with the "poniente" wind (hot west wind), less frequent with rainfall, and more frequent in autumn than in other seasons. Other correlations were found too, but these did not reach statistical significance.

It is as I say. The wind jangles the nerves.


More of my posts on Lyme disease

Thursday, 9 March 2017

Lyme disease and dubious treatments

Lyme disease is a difficult disease to treat. For currently unknown reasons a considerable number of people with Lyme disease who have received conventional antibiotic treatment protocols, go on to develop chronic symptoms. There is controversy about what causes these chronic symptoms and what to call Lyme disease that has become chronic. Let me resolve this in my own way here by using the term "chronic Lyme-related symptoms".

Medical treatments for chronic Lyme-related symptoms are unsatisfactory or controversial (repeated and extended courses of antibiotics), and frequently both. For this reason these symptoms, like other difficult to treat conditions, are a magnet for dubious practitioners peddling dubious treatments, sometimes undoubtedly in good faith, and sometimes probably not.

One such dubious treatment, I believe, is the salt and vitamin C "protocol". I have been unable to identify where this originated, or indeed identify any standardised protocol, but this site, which appears to back the treatment, advises taking 8 to 16 grams each of salt and vitamin C per day for adults. Now, excessive salt intake makes the kidneys work hard and may be a factor in the development of hypertension. Hypertension, in turn, is a predisposing or triggering factor in heart disease, stroke and kidney disease. The American Heart Association recommends taking "no more than 2,300 milligrams (mgs) a day and an ideal limit of no more than 1,500 mg per day for most adults". 2300 milligrams of sodium is the equivalent of 5.85 grams of salt, about 1 teaspoonful. So the salt/vitamin C protocol can take your sodium intake well above that upper recommended limit.

In order to allay our fears, the "Stop The Lyme Lies" website I have linked to above states, "We at lymephotos have tried consuming more salt than we recommend and have had no ill effects". But the subjective experience of a few people is absolutely not a credible way to test for harmfulness, so this affirmation is as good as meaningless. *

Another concern is that among the 29 purely speculative reasons given on the site to explain how the protocol could work, many are either scientifically inaccurate or rely on unsubstantiated assertions.

Further, the authors suggest that people in modern societies are deficient in salt. They say: "We are making up for decades of salt deficiency." I suggest this is not only untrue, but implausible. The consumption of salt is first likely to have become widespread with the development of agriculture and trade, and the consequent need to preserve food. The first recorded evidence of agriculture is from about 11,700 years ago. Yet Homo sapiens has been around for between 100,000 and 200,000 years, having evolved from a line of archaic humans going back at least 500,000 years. During all that time of human existence until the beginnings of agriculture, it is unlikely that salt played a great part in most human being's diets. Therefore, for the greatest part of human evolution, salt was irrelevant to the evolutionary process of natural selection. Simply stated, we have not evolved to be salt-dependent. It therefore seems unlikely to me that the abscence of any added salt at all in most people's diets would have any negative consequences. The naturally occurring sodium and chlorine present in foods is enough for our physiological needs in normal circumstances.

Does the salt and vitamin C "protocol" work? Nobody knows, and my own hunch is that we probably never will. That is because there is little chance of it being tested properly before it is lost beneath the growing rubbish heap of once-fashionable alternative treatments. Some people say they have benefited from it. That is not a recommendation. Many people say they benefit after being given a placebo.

I have no difficulty at all with people trying things out for themselves even when the scientific and medical establishments tell them they are useless. However, it is sensible to do so only if it is a low-risk strategy. If you ask me, this protocol is not low-risk.

* Lymephotos appears to be a sister site of Stop The Lyme Lies.


More of my posts on Lyme disease

Friday, 3 March 2017

Lyme disease: cure or remission?

I hear or read more and more frequently that there is no cure for Lyme disease, only remission. I wondered whether this assertion is based on any good science and have failed to find evidence to that effect. I therefore assume it is based upon the opinions of certain doctors. But in the absence of reliable supporting evidence, taking authority opinion to be the truth is an error of reasoning. That is because even experts, when interpreting their own experience, no matter how extensive that experience is, are prey to biases of various different kinds. I find it is always a good idea to take anything "the experts" say with a pinch of salt, all the more so where Lyme disease, about which there are so many unknowns, is concerned.

Let me now insert a declaration of interest and a disclaimer. Declaration of interest: I have (had) Lyme disease and my understanding is that I am recovering from it. Disclaimer: Any opinions or thoughts of mine that I express here I do not regard as "the truth": they reflect my current thinking, but they may of course change in the future. I say this here because I know there are many people who suffer terribly over long periods with symptoms that are or may be in some way "Lyme-related", and I have no wish to cause offence to anybody, least of all those who are suffering.

So, to go on...

The assertion that "there is no cure for Lyme disease" derives from the definition of Lyme disease as "active Borrelia infection", combined with the belief that that organism, once present, can never be effectively eradicated from our bodies. But here, unfortunately for purveyors of entrenched opinions, we come up against three unresolved problems: (1) The confusion and disagreement about what constitutes Lyme disease and whether this is the same or a different entity to Post-Treatment Lyme Disease Syndrome / Post Lyme Disease Syndrome. (2) Whether chronic Lyme-related symptoms are or are not caused by persistent infection. (3) That there is at present no reliable way of demonstrating whether or not Borrelia can be definitively eliminated from our bodies.

Some uncomfortable facts:
  • All testing for Borrelia lacks a degree of reliability in which we can be reasonably confident. If you don't look hard enough, you may not find anything even if something is there (false negatives). But importantly, if you look hard enough, you will get a test result sooner or later which says it's there, even if it isn't (a false positive). Thus it is easy (but not necessarily justified) for one "expert" to say such things as "I have never had a fibromyalgia case without finding evidence of Borrelia infection".
  • Asymptomatic borreliosis seems to be common. Similarly, common symptoms that appear with Borrelia infection also occur without reliable evidence of infection. If this is the case, what rationale do we have to relate our chronic symptoms to a positive Borrelia test?

Some other "diseases" for which it could argued there is no cure:
  • The common cold. One cold will pass, but you're always going to get another one. Remission and relapse?
  • Cancer. A tumour may be removed or shrunk to nothingness, but your cancer-proneness is unlikely to change. Which is the problem, the tumour or your proneness to cancer?
  • Major depression. Again, a depressive episode can be "cured"... but can a depressive tendency?
  • Alcoholism. Alcoholics are taught to label themselves as such no matter how long they have consistently stayed off alcohol (thus demonstrating that they are de facto not currently alcoholics), the theory being that one cannot be cured of addictive behaviour patterns, so to label oneself as an alcoholic keeps one on one's guard.

From all this I am getting the idea that we need to rethink our notions of what constitutes "disease", "cure" (or even do away with these words altogether), and "health". In this context the oft-repeated idea that there is no "cure" for Lyme disease, perhaps unwittingly, approaches a general truth under a new paradigm of health and illness. After all, what is there a "cure" for? If on the other hand we take it at face value within the mindset that chronic Lyme disease equals continued Borrelia infection, I suspect it has gained traction because it appeals to some psychological need, rather than for any good objective reason.

A final reflection: rather than the ambiguousness of "cure", perhaps it would be a truer thing to speak of "feeling fit and well". Common language is often nearer to real experience (truth?) that medically-led jargon.


More of my posts on Lyme disease