Caudwell LymeCo has just run a survey of over 200 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we reported were based on the responses given by patients and we have not independently verified them with their doctors or diagnostic laboratories.

In this blog post, we publish some comments from respondents to our survey, which we feel gives a good overview of where the guidelines are helping patients, but also where further progress on needs to be made on doctors taking them fully into account when diagnosing and treating potential victims of the disease.

We feel it is important to keep sharing these stories to make more people aware of the progress that is still needed.

A positive outcome thanks to the NICE guideline

“My GP followed the NICE guidelines and was very approachable and sympathetic to my case. However I was the first patient he had ever treated for Lyme so he had to refer to the guidelines.” 

However, this patient is now on a long waiting list for an infectious diseases consultant, after their referral was downgraded form urgent to routine, following two negative ELISA tests.

A positive blood test being ignored

It may seem hard to believe, the following story is not the first time we have heard of GPs discounting a positive blood test for Lyme disease even though it was performed by an NHS laboratory.

“After positive test results my doctors still didn’t connect all symptoms with Lyme disease and are still writing unfair comments in my medical records. It take such a long time to see doctor and it seems like they put me in loop. I need to prove all my symptoms otherwise they ignore it. I feel like much more people complain about symptoms of Lyme and they [are still] not aware what Lyme disease symptoms are. The knowledge of the GP about Lyme is drastically low, I heard, ‘I have a degree, I’ve been doctor for 20 years, I don’t need an NHS web page’”.

The guideline was followed but the patient is still ill

This is perhaps the thorniest problem of all. This respondent to our survey described receiving the full treatment advised in the guideline and more, but still feeling ill. We need more research to tell us how to help these people who are given antibiotics but do not recover.

“I felt that there was no understanding or guidance.  Finished 21 days of antibiotics and symptoms got very bad. Visited GP with a friend to help me walk, very poorly and lots of spasms. Was then admitted to hospital and 21 days intravenous antibiotics. Improved but still suffer 7 months later of very varied symptoms.”

A confusion in understanding the the guideline

“I had to really push to get the second course of antibiotics and to start them straight after finishing the first course. GPs have to justify every antibiotic prescription and myself and my GP found the guidelines for second course quite ambiguous (can be prescribed if the first course has not worked).

There is no clarification if there should be a gap to see if all symptoms go or can second course be prescribed straight after. Also after two courses of antibiotics Lyme is seen as treated and any other symptoms are considered unrelated.“

This charity has been working to help everyone understand the guideline, both patients and their doctors who sometimes telephone to speak to our CEO and ensure they understand the guideline fully. We know that we ave achieved tangible progress in educating doctors and the public but a lot more work needs to be done.