The NICE Guidelines Lyme Research Recommendations IN 3 MINUTES

The Draft NICE Guidelines research recommendations can be read in full here (starting on page 15).

Our version is designed to be read in 3 minutes.

Are you ready?

1. Develop a “core outcome set” for studies of Lyme disease

We need a standardised list of all Lyme symptoms, and a number rating to indicate severity (e.g. from 1 to 5)

Why?

Many studies assessing antibiotic treatments, diagnostic tests etc. only report on one or a few symptoms, such as “neurological symptoms” or “EM rash”, without saying anything about the other symptoms. They don’t use a number scale to measure the severity of each symptom.

What will the result be?

If all research uses a standard measure, it will be more objective, difficult to bias the results reported, and will mean all future research papers can be directly compared to each other.

All the other research (below) will be good quality only if we establish these core outcomes first.

2. Determine the clinical epidemiology of Lyme disease in the UK

How many people in the UK have Lyme disease, how are they treated, how many actually get cured and what are their long-term symptoms?

What happens to people with inadequate antibiotic treatment? What are the different types of immunosuppression associated with Lyme and how does this affect patients’ symptoms and recovery?

Can we find incontrovertible proof of congenital transmission?

Why?

We don’t know how many people in the UK have Lyme, we don’t know how they caught it and we don’t know how many of them actually get cured.

What will the result be?

With actual statistics, the whole scale of the problem will be exposed. We will find out how many people are getting diagnosed late, how many people aren’t getting cured, how many people with Lyme are immunosuppressed, and of the ones who do get cured, what treatment they had.

This objective evidence will prove what needs to change in the way NHS patients get diagnosed and treated.

3. Find out the actual prevalence of Lyme and the co-infections

We need to take a random UK population sample and test how many have Lyme antibodies. We need to do the same with babesia, ehrlichia, anaplasma, bartonella and Q-fever.

Why?

The NHS currently has no information about this at all. Lots of patients say they have co-infections and they should no longer be ignored.

In America some people have Lyme antibodies but no Lyme disease or history of Lyme symptoms. Apparently their immune system fought off Lyme the same way it can fight off flu, for example. We have no information on this in the UK.

What will the result be?

With proper statistics on co-infections in the UK, doctors can get a better understanding of Lyme and co-infections (which this charity calls LymeCo) and patients can get more appropriate treatment.

If Lyme really is a self-limiting disease for some people (i.e. patients get better without needing treatment) and we find out how many, we could start researching what makes them get better while others don’t.

4. What is the correct antibiotic treatment for Lyme disease?

We need proper antibiotic trials, assessing cure using the Core Outcome Set, to find out the best antibiotic treatment tailored for each patient. We need to test different antibiotics, different treatment lengths, and oral vs. intravenous therapy.

Why?

The only research on this is out of date and very low quality, and no research has ever been done on UK patients (who may have different strains of Lyme bacteria from US patients).

Currently patients are not prescribed long term antibiotics, some remain chronically ill and some of them end up costing the NHS a fortune in treating symptoms and complications, not to mention lives ruined.

What will the result be?

The implications for patients are huge. If longer term antibiotics, or higher doses, can get more patients better, then they should start getting treatment on the NHS. If they can’t, then at least we will all know we need to research other treatments.

5. What are the best lab tests to diagnose initial Lyme infection, late-stage Lyme infection and a second Lyme disease infection?

We need to evaluate all tests for accuracy, including the biomarker CXCL13, the lymphocyte transformation test (done by BCA labs, for example) and the ELISPOT test (done by Arminlabs, for example).

Why?

Lyme can present with such a variety of different symptoms that we do need a reliable lab test. The only tests researched so far are the ELISA and Western Blot, but the research is all low quality and not done on UK patients.

What will the result be?

These other tests don’t rely on antibodies so they would solve the sero-negativity question.

They would also mean you can test after treatment, to find out if the patient really is cured.

These tests would become free on the NHS if they are proven to be more reliable than the current tests.

There! We promised it would be brief.

We are very interested to hear what you think about these research recommendations. Please add your comments below.

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4 thoughts on “The NICE Guidelines Lyme Research Recommendations IN 3 MINUTES

  1. why antibiotics only
    my whole family of 5, extremely successfully in remission for well over a year now. with no ANTIBIOTICS.

    1. Yes I agree Martin !
      If I continued with antibiotics, I’m pretty sure I’d still be bed ridden now.

      An intuitive and pulsed herbal protocol and supplement routine has been crucial to my recovery.

      If we start these recommendations with only a focus on antibiotics we aren’t doing ourselves any favours.

      Please include exploration of healing options from the naturopathic and nutritional world as well as conventional medicine. Thank you. and well done in all your work John and team !

  2. Linking to points 3 and 4 in the NICE research recommendations. I found a long dose of Albendazole reduced thigh/abdominal swelling and surprisingly, significantly improved my cognitive ability. I tried antihelminthics when I read that Willy Burgdorferi had discovered filarial worms as 1 of 6 coinfections in ticks carrying Borrelia.

    Therefore, consider helminths/nematodes should be included. As well as longer use of antihelminthics.

    Also seen a few in UK forums diagnosed with FL1953, the protomyxoa, also not really about antibiotics.

    So these may be the more UK indigenous coinfections. They also need to be hit first before you start antibiotics to get to the Borrelia (and the coinfections listed in the research guidelines).

  3. I really like these recommendations (much more than the draft NICE guidelines themselves). The focus on antibiotics may well be most important for those with acute Lyme and as a therapy for preventing chronic Lyme. I have both an underlying chronic infection (for many decades) which over time responded pretty well to dietary and natural therapies, supplements & herbs (anti-parasitic, anti-viral, immune-supporting, anti-bacterial). My current more acute re-infection has been controlled above all by multiple long-term antibiotics. Although I’m taking many supplements and herbs as well, I know this because eliminating/withdrawing the antibiotics proves disastrous for my health. I can therefore form the opinion that the antibiotics are currently essential. I agree though with the ideals above that research should be extended to natural therapies as well but obviously should be carried by taking careful details of symptom history & whether the patient is chronic or acute (or both as in my case). Thanks for your work.

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