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This post is the first of a forthcoming series intended to help explain various aspects of the Draft NICE Guideline for Lyme disease to patients. In this article, none of the views expressed should be assumed to be those of Caudwell LymeCo. They quote and explain what the Draft NICE Guideline says and, where it is explained, this is merely intended to aid patients’ understanding of what the guideline itself means. All of the material in this post expresses the Draft Guideline content and not personal views.
A larger number of posts will be published on this website after the final version of the NICE Guideline is released in April 2018. At that time, this and other posts may be modified to reflect changes made to the Draft Guideline.
This blog post is an explanation of a document published as guidance for medical professionals. It does not have any authority over decisions made by your doctor. It should not be taken as medical advice.
Do the Draft NICE Guidelines acknowledge chronic Lyme disease?
The short answer to this question is YES, although the Draft NICE Guideline does not use that particular term.
The Draft NICE guidelines do acknowledge that long-term Lyme disease symptoms and infection can exist.
Instead of “chronic Lyme disease”, the guideline uses the term “persisting symptoms”.
Why?
The Draft Guideline deliberately avoids the term “chronic Lyme disease” because there is no accepted or standard medical definition of “chronic Lyme”. Different research papers use their own definition, and they also use many other unclear terms.
As the Draft Guideline states:
“The terminology around Lyme disease is varied and many poorly defined terms are used in the literature (such as acute Lyme disease, late Lyme disease, chronic Lyme disease and post-Lyme disease). This guideline has avoided using controversial definitions and has concentrated on providing evidence-based advice on diagnosis and treatment, according to the clinical context, presentation, symptoms and available treatments.”
What does anyone mean by “Chronic Lyme”?
Does chronic Lyme mean persistent infection after standard treatment? Does it mean symptoms which remain after the infection has gone?
The standard medical definition of “chronic” is lasting more than 3 months. So, does it mean Lyme disease that has remained undiagnosed and untreated for over 3 months? Or does it mean any symptoms caused by Lyme disease, that have lasted more than 3 months after standard treatment?
We do not have the practical means to diagnose which category each individual patient would be in, never mind agreement on which category, or categories, “chronic Lyme” refers to.
What does the Draft guideline recommend for people with ongoing symptoms after Lyme disease treatment?
The Draft NICE guidelines acknowledge that Lyme disease infection may persist after standard treatment. They also acknowledge that we have no research evidence on how to cure such cases.
The Draft Guideline says:
Explain to people with persisting symptoms following antibiotic treatment that:
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symptoms of Lyme disease may take months to resolve even after treatment
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continuing symptoms does not necessarily mean they still have an active infection
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symptoms may be a consequence of damage from infection
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there may be an alternative diagnosis.
How can you tell if infection has persisted after antibiotic treatment?
The decision can be difficult with Lyme disease patients.
Lyme disease is a complex illness. Some types of tissue, and therefore some symptoms, can take time to clear up even after the infection has gone (see below), meaning it can be difficult to judge whether the infection really is still present or not.
There is, regrettably, no reliable test to establish whether an infection has cleared up after treatment, or not.
If a doctor wants to evaluate a patient for signs of active infection, some of the clues he might look for could include swollen glands, fevers or night sweats. These might suggest there may be an infection present.
If the doctor believes infection may still be present, trying more courses of antibiotics than the standard two courses seems a logical thing to experiment with. This is what doctors do with most other infections which do not clear up after the initial course of antibiotics.
This is why the Draft NICE guidelines for Lyme disease do allow that to happen – however, not just based on the decision of a GP, but under the care of a consultant as well.
The guidelines make this recommendation because decision to prescribe a treatment that is not scientifically proven in research evidence to work should be undertaken after careful deliberation. This is in line with general NICE policy.
“Do not routinely offer further antibiotics if a person has persisting symptoms following courses of antibiotics. Consider discussion with or referral to a specialist.”
Isn’t there a test?
A direct detection test like PCR would be an ideal way to establish whether active infection is still present, but the current PCR technology for Lyme disease only finds the spirochetes in a small proportion of patients and would produce a false negative for the majority of them.
The National Reference Laboratory (RIPL) does so this test occasionally, though, in unusual cases in which the doctor thinks it could be useful.
What does it mean if there is no infection?
There is no practicable or reliable way currently to establish this, however, once a doctor has concluded persistent infection seems unlikely, he or she should monitor the patient while observing if tissue healing is taking place.
Some injured tissue may heal over months or years, whilst some damage may be permanent.
For example, injured nerves can take years to heal, and sometimes never do. Damaged joints will be very unlikely to heal and will in fact continue to deteriorate due to normal wear and tear – as they do in everyone during their lifespan – even after the infection has been cleared.
The doctor should offer treatments to help deal with symptoms should they remain a problem.
The Draft Guideline also says that doctors should help patients to apply for disability and other allowances and help at home, if they are left unable to function or work as a result of having caught Lyme disease.
I would like to point out the following case study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.
Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d
Abstract
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
Carl Tuttle
Independent Researcher
Lyme Endemic Hudson, NH USA
Dr D Klinghardt prefers to say “insect-borne illness”.
Whatever the terminology used by the guidelines, I know that symptons persist even after extended treatment with anti biotics – I know because I experience them every day.
Sent from Samsung tablet
Is NHS working on a more conclusive test for Lyme disease not one relying on antibodies. Perhaps a urine test which shows spirochetes of borrellia bacteria etc would be a more useful test. Therefore less false negatives etc. Also a patient who has had treatment for Lyme disease but not sure if still having symptoms from it etc can have the test and know for certain it has gone if no spirochetes show up etc. I am not sure but I did read they used to do sone form of urine test with fluorescent where shows up the spirochetes. Maybe spending money on a new better test would be a better way forward. Then obvious treatment for definite positives etc.
The NICE guidelines committee has recommended that this research should be done, but the research is not actually ready to be done yet.
The next step will be when the final version of the NICE guideline is published in April – at this stage, the research recommendations can be forwarded to the Department of Health to consider for funding.
We as a charity are hoping to have the opportunity to advocate to them why we think doing this and all the research recommended in the guidelines is so important. We are also raising money in the hope of being able to contribute something for this research, even though fundraising for Lyme disease is extraordinarily difficult and we have so far raised very little. We are also offering our support to the new All Party Parliamentary Group for Lyme disease and asking them to press for the Department of Health to fund this research, although the MPs make their own decisions and we do not know if this is what the group will ultimately decide to do.
At Caudwell LymeCo we all agree with you that finding a reliable test for Lyme disease is of paramount importance. The Nanotrap urine test, which is the one I think you are referring to, sounds very interesting and we hope to see more research on it in the future.
Unfortunately making scientific research happen is a lengthy process – a lot of the time is taken up simply working out exactly what research needs to be done and how, before it can even begin – but we have been working for a very long time on trying to help things forward.