Argh, I have Lyme disease! What is it?
Lyme disease is a vector-borne bacterial infection, which is typically spread by ticks. Here is one:
http://www.doh.wa.gov/CommunityandEnvironment/Pests/Ticks/TickPhotoGallery
There is a lot of out of date information about Lyme, for example that ticks are the only carriers, that the tick needs to be attached for a long period of time, that it is geographically limited, that a rash (erithema migrans) is common, that Lyme is easy to diagnose, that blood tests are reliable, that symptoms are mild, and that patients recover well from the recommended antibiotic treatment.
Whilst our understanding of Lyme disease has developed, much of this old thinking still persists, resulting in poor diagnoses, and patients being generally under-treated. It is estimated that only around 60% of people with Lyme disease make a full recovery, with the rest experiencing lingering chronic symptoms. "Chronic" Lyme patients are often in very poor health and left too ill to work.
Generally, the later the disease is treated, the more severe the symptoms and the harder the disease is to treat. Since Lyme affects people so differently, with a range of diffuse symptoms (from rash, flu, joint pain, headache, confusion, fatigue, chest pains), diagnosis and treatment is often delayed, and patients face an unacceptable battle and are commonly blamed by health professionals for being difficult. Since blood tests return false negatives in up to 50% of cases, ill patients are often misdiagnosed as health professionals lack the experience to make a diagnosis on symptoms alone.
Only when a person recalls a tick bite, gets a rash, notices the rash, presents the rash to the GP, the GP recognises the rash, the GP agrees to a blood test, the blood test is done in a timely manner, the blood test comes back positive, there are no coinfections, and the antibiotic treatment is of sufficient duration, will the treatment be successful. As you can imagine, failure in any one of these steps can have a disastrous outcome for the patient.
Borrelia, the bacterium that causes Lyme, has co-evolved with animals for hundreds of thousands of years. Spreading between animals and ticks is essential for its lifecycle. It is a stealth pathogen, well adapted to avoiding the host's immune system, be it a deer, a mouse, a hedgehog, a bird, a lizard or even occasionally a human. Borrelia has the largest genome of any known bacterium, and is far more sophisticated than we first suspected. Through the trial an error of evolution, Borrelia has built up a large arsenal of techniques to survive in our bodies:
- The tails (flagella) of the bacteria allow it to burrow deep into tissues and move around the body
- It moves to places which are scarce in white blood cells, such as joints and the brain
- It suppresses the immune system
- It causes autoimmunity
- It changes its protein coat to evade our immune system
- It hides inside other cells, and between other cells
- It stays dormant for long periods, in an inert (round body) form
- It forms protective biofilms
http://www.ilads.org/media/boston/slides/sapi/sapi.html
- It suppresses body temperature and regulates the immune response
- It adapts to your body
A short course of the antibiotic Doxycycline is generally insufficient to clear a chronic (6-month+) Lyme infection. Yet health professionals are continually surprised by this, or tell the patient that since the treatment has "completed", that they are no longer infected and there must be other explanations for their lingering symptoms. It is also claimed that there is "no evidence" of the effectiveness of antibiotics against chronic Lyme, but that is only because Lyme is so good at tolerating antibiotics, not because there is no infection. In fact, Borrelia can be cultured from all people with "post treatment Lyme disease syndrome" (PTLDS - an unkind and wrong name for Lyme disease), whereas it cannot be cultured from people without Lyme or who are cured. The symptoms of PTLDS are identical to the original disease, PTLDS responds to antibiotics (just not enough to cure the patient), flares in cycles like the original disease, suppresses body temperature, only affects the original infected areas and moves around like live bacteria do. It's the infection stupid.
The main reason antibiotics are of limited use against Lyme is because they generally only kill bacteria as they are dividing.
- Short courses may miss flare-ups
- Borrelia divide very slowly
- Doxycycline converts Borrelia into the dormant round body form
- Biofilms tolerate antibiotics
- Dormant bacteria aren't killed
- Failure to penetrate joints and the brain properly
- Blood levels of antibiotics vary greatly between individuals
- Doxycycline is bacteriostatic at low doses
- Antibiotics never kill 100% of bacteria in any regime
- The immune system is damaged and cannot "finish the job"
- There are more often than not coinfections
- Borrelia's cousin, syphilis, takes months and months of treatment to clear. Why not Borrelia?
Repeated applications of doxycycline are unlikely to clear an infection, leading practitioners with a misplaced faith in antibiotics to conclude that the problem isn't bacterial.
Some doctors treat chronic Lyme disease with long term antibiotics. (I myself am undergoing such a treatment). This is however contentious, as research groups have traditionally focused on autoimmunity, whilst overlooking the possibility of continued infection and failing to follow up their patients. But with such a complex disease, all aspects need to be addressed, and the patient cannot be cured when there is still a lingering infection. The studies which cast doubt on the long term use of antibiotics don't pass the "laugh test", because long term antibiotics help and even cure many patients, just not all of them. The main criticism of these studies is that the tested regimes are too short, and don't evaluate modern treatment regimes involving combination antibiotics with cyst and biofilm busters. Nevertheless, better treatments, and the evidence to back them up, are in short supply.
Borrelia eat collagen in your body, such as joints and nerves. In addition to persistent infection, Lyme causes other chronic problems. The immune system is damaged, with persistent autoimmunity, and it's thought that inert bacterial fragments cause residual inflammation. There can be permanent physical damage left by the Borrelia, such as degraded joints and scarring, nerve and brain damage, arthritis, and organs such as the thyroid can be permanently damaged. Antibiotic treatments themselves can harm patients.
Whilst there are differing opinions on the causes of chronic Lyme, I find the experiments involving "persisters" (round body forms and biofilms that tolerate antibiotics) to be the most compelling. Essentially, patients have symptoms because they are still infected. Many patients do recover on sufficient courses of antibiotics, but not all of them. The current treatment guidelines are too conservative because evidence is lacking, not because the treatments don't work. Of course, open-ended antibiotic treatments are not the answer, as it has to be a treatment plan with a defined outcome. A good Lyme doctor will rotate antibiotics as the condition plateaus, and many people will try herbal and dietary treatments to tame their symptoms.
In conclusion, chronic Lyme disease is very real and can be severe. To add insult to injury, some researchers deny this, and Lyme sufferers are often told it's all in their heads. Tens of thousands contract Lyme disease in the UK each year, and a proportion of those will develop chronic symptoms. Lyme is implicated in many chronic conditions such as fibromyalgia, ME, CFS, rheumatoid arthritis and Alzheimers. The medical community are only slowly waking up to this, but don't have any good answers.
Chronic Lyme disease is complex and is unlikely to be just one thing. It is a combination of factors that can present themselves differently in different patients. Good Lyme doctors understand the different presentations and will work hard with nutrition and immunity, but such a complex and individualised disease does not lend itself to double-blind tests when every patient is different. Such a complex disease requires specialist treatment and knowledge that is sorely lacking.
Chronic Lyme disease is complex and is unlikely to be just one thing. It is a combination of factors that can present themselves differently in different patients. Good Lyme doctors understand the different presentations and will work hard with nutrition and immunity, but such a complex and individualised disease does not lend itself to double-blind tests when every patient is different. Such a complex disease requires specialist treatment and knowledge that is sorely lacking.
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