York Conference June 2004 - DR David Owen

Is Lyme Disease taken seriously in the UK?

Laboratory aids to diagnosis:

Serology, how unreliable is it? Well we don’t know.

Western Blot: I’m not going to go into too much detail. It is better than ELISA, no doubt, but it does suffer limitations and a negative test doesn’t exclude Lyme Disease

Other tests:

Polymerase Chain Reaction (PCR) - one of the best tests but very many false negatives occur.

FISH, which is the Bowen test; I don’t know how reliable that is, it may be a very good test for the presence of Borrelia, we don’t have the data really.

I don’t know about the Lyme Urine Antigen Testing (LUAT)

All these tests offer some information but no test can reliably exclude Lyme.

Even if you get a perfect test to detect the presence of Borrelia, the need for treatment will still have to be decided on clinical grounds. This is just trying to illustrate that point; we all carry bugs that don’t do us any harm. Even an enterococcal bug can be carried by people harmlessly but in someone else can cause death from meningitis within a few hours. Why does that transformation occur? Well, we don’t know but we can speculate and there must be many different reasons; to do with the host, to do with the environment, or to do with (and this is important – we know little about it) how microbes interact with each other.

Some factors which determine whether Lyme Disease is symptomatic:

As has already been suggested, you can carry this and be perfectly well. There is a concept of spirochaete load, I think that’s very important. We can’t measure it directly but it’s possible to know it exists partly because of the Herxheimer reaction. Somebody who has strong Herxheimers at the start of treatment probably has a high load, and that’s obviously related to various symptoms. Many host factors almost certainly are and the concept of auto-immunity is also almost an anathema to Lyme doctors, but there’s no reason why auto-immunity couldn’t occur – it’s a long and persistent infection; it’s quite possible.

The presence of co-infections; I’ll not go into these at the moment, but we know they are important in determining symptoms in Lyme Disease. Also co-existing infections, that is infections not carried by ticks but picked up in other ways. The release of neurotoxins, we know that’s important. Although nobody, as far as I know, has identified a definite neurotoxin from Borrelia and the existence of a reversal encephalopathy is highly suggestive of neurotoxins.

How is Lyme Disease treated?

I’m not going to go into too much depth here, but there are a lot of general points to make. I think we can safely say that it’s a complex disease with no simple remedy. If that were not the case, then we wouldn’t be here today. I think we must be tolerant of different approaches and regimens of treatment until we get more information about how to treat Lyme Disease. We shouldn’t have a closed mind in other words.

Other things to bear in mind when I see patients: I like to discuss it at length and be honest about the fact that we might not be certain about Lyme Disease. Often these patients, have had no-one listen to them for a long time and they really appreciate someone who a least has possibly some understanding of what they are going through.

I recommend they keep a symptom calendar. General measures such as smoking, alcohol and stress avoidance are important, no doubt. Some medications, immuno-suppressives of which not just steroids, but particularly steroids, and I think it’s advisable to avoid CNS stimulants and depressants on the whole. Some patients may be so depressed that they benefit from SSRIs or have such severe pain that they need an anti-inflammatory. Hopefully this will be for a short period until antimicrobial therapy takes effect.

I’m not going to go into detail about specific treatments except to say that there are broad treatment categories:

Monotherapy means using one drug.

Combination therapy; more than one antibacterial agent, which may be at certain times and not others, in other words pulse.

Now the rationale for the long- term use of antibiotics in Borrelia. I’ve put a list of reasons here. We know that the doubling time, that’s the time to divide Borrelia, is around 12 hours, compared with 20 minutes for E. coli, one of the other common bugs in the body. We know that dormant forms of Borrelia do exist and we will hear much more about that later. Mycobacter TB takes 9 months of treatment. Also we know, many studies have shown that even after very long courses of antibiotics, including intravenous, Borrelia can still be recovered by culture. Strong evidence that it’s persistent.

In America, some people working on Lyme Disease report that they are less likely to find spirochaetes in those on antibiotics. Also, many patients find that their symptoms improve dramatically after a period of antibiotics but they recur when they are stopped. One of the worries that patients have when they go on antibiotics is whether it will damage their immune system. Well I don’t think there’s evidence for that, but Borrelia certainly can damage the immune system and I’m sure we’ll hear more about that later on.

So those are reasons for, but are there any reasons why we shouldn’t use antibiotics in the long term in Lyme Disease? Well some doctors say there is no proof that it works, but what I would say to these doctors is; “Where is the proof that 4-6 weeks of antibiotics is sufficient to cure Lyme Disease?” Also they may be concerned about resistance. Resistance in the community: well I think it’s unethical to use that argument towards the treatment of an individual. Resistance in the individual: I think if we use wholly restricted antibiotics then we needn’t worry really about resistance of other organisms and resistance of Borrelia doesn’t seem to be a particular problem, although if anyone’s got any more information about that I’d like to hear about it.

Side effects of antibiotics: Usually minor, certainly in the ones I use, and not a major problem.


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