Dr. David Owen
I reviewed current UK medical text books on Lyme disease looking at diagnosis and treatment. Doctors still get a lot of information from textbooks and this may determine the treatment carried out. I reviewed textbooks at my local library in University Hospital of Wales and reviewed what the books said about Lyme Disease.
Many make no mention of lyme disease at all, which is not surprising since it is a fairly newly discovered condition. Comments of most textbooks refer to Borrleia (not co-infections) and most comment has a similar theme. Of those that did mention Lyme, this was what a few of them said:
Clinical medicine 5th Edition, Kumar and Clark: Regarding diagnosis they state that a diagnosis of Lyme disease is confirmed serologically.
Lecture Notes on Clinical Medicine 5th Edition. Also says Lyme disease diagnosis is serological.
Master Medicine 2nd Edition states that Rare false negatives occur in serological tests.
Textbook of Medicine 4th Edition, Zuhani and Moxon diagnosis is made by serological tests for Borrelia antibodies.
Medical Microbiology a textbook which one would hope would be more informed but they too say that Lyme disease is diagnosed serologically.
Churchills Pocket Book of General Practice 2nd Edition. (A lot of GPs have this). This states that acute and convalescent antispirochaetal antibodies confirm the diagnosis which is a strange statement and refers to all spirochaetes not just Borrelia.
New Oxford Textbook of Medicine. 4th Edition in 3 volumes. (last edition 15 years ago so a new issue is a rare event, states that where Lyme disease is endemic (map of where?), diagnosis of Em is purely clinical. But patients with extracutaneous Lyme Borreliosis almost always have diagnostic serum antibodies to Bb. Dr. Owen felt that neither of those statements are right.
The only textbook that was on the right track was Davidsons Principles and Practice of Medicine (2002 Edition) which states that the diagnosis of Lyme Borreliosis is primarily clinical.
Going onto the treatment of Lyme Disease, things get worse, If you have gone to a GP and not got much treatment, well this could be why.
Davidsons Principles and Practice of Medicine is once again perhaps the only one on the right track re treatment as well as diagnosis. Disseminated disease and arthritis requires minimum of 30 days treatmet prolonged or repeated courses may be necessary for arthritis.
Churchill Pocket Book of General Practice states that treatment is 500 mg of Amoxycillin for 10 14 days.
Kumar and Clark late disease 2 4 weeks of Intravenous penicillin or ceftriaxone treatment is unsatisfactory (perhaps they should look at it?)
Oxford 4th Edition - treatment for Lyme arthritis is Doxycycline 100mg for 28 days or 500 mg Amoxycillin 3xday for 28 days. Again leaves a little to be desired. And again in the new Oxford Textbook of Medicine it states that there is no evidence to support that treatment with a combination antimicrobial therapy, prolonged (that is over a month) or repeated courses of antibiotics and also intermittent antibiotic therapy. I think that the fact that this was stated shows that the converse has been suggested as we all know.
The phrase there is no evidence that is written again and again. Recently in the British Medical Journal (BMJ), a GP, Dr. Ken Barraclough, states that he is beginning to find it irritating, that the phrase is used like a spell to negate all opposition.
I want to proceed to the second part of my talk:
It became apparent to me that Lyme Disease is not taken seriously by many of the medical profession and colleagues. I wanted to know the reasons for this and address them and perhaps take the whole thing forward. Firstly there is diagnosis, I wont go into this except tosay it is not an easy diagnosis. Reason?
There are very often many different symptoms, which can lead down many blind avenues of diagnosis. The symptoms are multiple, non-specific, multisystematic and neuropsychiatric symptoms may predominate and this may lead to a diagnosis of no physical illness being present in the patient. Often GPs frequently fail to ask the right questions: for example Have you been bitten by a tick? This is a question that is not asked. Often the symptoms are very common in the population, for example arthritis symptoms, very common especially the older people get. Other diagnosstic difficulties with Lyme disease - as doctors we make a diagnosis based on physical signs - the pointers to a particular diagnosis. However, in Lyme, there is often a lack of clinical signs or the significance of clinical signs is overlooked.
Symptoms are long and needs time to go through rash, diagnosing a rash is never easy. Lack of reliable diagnostic laboratory tests and numerous normal lab investigations. The Fact is there is no certain way to make the diagnosis, means it is a diagnosis of exclusion at present. Of course, if there are no physical signs and all investigations are normal they perhaps not surprisingly conclude there is no physical illness in the patient.
Numerous problems for the doctor in diagnosis of the patient.
There is a lack of interest, the doctors are not interested. If they are not interested then they shouldnt be there.
Failure to keep up to date - Always a problem. Continued medical education,
The doctor may
be egocentric, paternalistic or both and inevitable that type of training we have that it does occur.
Some doctors may be reluctant to change their views also if time has gone by. I know a doctor in his 80s who just believes it does not exist. He has gone his whole life not knowing about
this and now he denies it exists.
Perceived lack of harm re: Lyme Disease, we all know that this is completely wrong and that there are recorded fatalities from Lyme disease.
One of the worst things in doctor-patient relationship these days is the atmosphere of distrust which goes both ways. Doctors may mistrust the patient may sue them or has the illness for their own gain, but patients may mistrust the doctor, read about misdiagnosis which the media reports on frequently.
For the patient I couldnt think of many problems with them. Not every symptom is Lyme Disease and perhaps there is a natural tendency to put every symptom down to this, although some may well be.
Problems with the Health care delivery system in the UK and the calls on the NHS. Work overload. Doctor wont be able to give you five to ten minutes, highly inadequate for Lyme Disease patients.
Specialist appointments can take a long time and not many true Lyme Disease
specialists practising in the UK.
Financial pressures in the system.
Problems with Authorities
Fear it could be widespread, a floodgate effect and lead to mass hysteria.
Worried about probable Lyme Disease in UK impact on trade and tourism.
Worry over antibiotic
resistance related to overuse, but this is debatable because veterinary medicine uses far more antibiotic usage than human medicine.
Problems in medical education Undergraduate. With regard to Lyme Disease, when I was a student Lyme Disease was not a recognised condition, it is now, but how much coverage is possible on the curriculum. There are always problems getting enough time for every specialism and teachers want time for their own field. With Lyme disease there is probably a lack of teachers.
Postgraduate. For qualified doctors there are other problems as often it seems pharmaceutical firms have set the agenda. I am tired of going to meetings where only hypertension, diabetes, osteoarthritis etc are discussed and little attention goes to other conditions.
There is again a lack of teachers for postgraduate doctors on Lyme Disease. And there is a failure of journals such as the BMJ to cover Lyme Disease.
Information Problems. Information is more freely available these days but there that brings its own problems. Information overload and seeing the relevant information is more difficult and this can result in a drowning effect. Some information is plainly wrong information. I saw recently on the internet eg Lyme disease was caused by aninsect small mistake perhaps but still wrong information. And worse misinformation states - no evidence for implying it is wrong to treat patients with antibiotics (which is misinformation) and quite mischievous.
Mistrust of information, especially information on the internet. Wheras a healthy suspicion may be a good thing but it goes further - so that all information on the internet is suspect and it is a pity that this is occurring but it does.
Perceived Lack of Scientific Evidence. Also another aspect. Lyme Disease not taken seriously, doctors perceive no scientific evidence - this is completely wrong but there is plenty of evidence.
What type of evidence looking for? Some of the most significant evidence comes from the patient themselves. Doctors dont put that into the equation. The patient is a witness and should be listened to carefully.
There are reasons for the lack of Controlled Trials. There is a lack of contolled trials and for that are reasons are clear. Lyme Disease is very chronic and results may take years and this gives trials timescale problems. Very significant effect on Controls and Trials. Problems with patient selection and problems with finance and the pharmacautical companies setting the agenda. Later on there will be a lot of questions I am sure.
Lyme Disease Action, Registered Charity Number 1100448, Registered Company Number 4839410
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