FAQ: Lyme Disease Frequently Asked Questions

DISCLAIMER: Caudwell LymeCo charity shares public domain  information, which it believes to be reliable, in good faith. It should never replace the advice of a qualified physician with a licence to practise medicine. If you believe any information on this website to be incorrect, you are invited to contact the charity using the Contact page.

Lyme disease FAQ

Catching Lyme Disease

My doctor says there’s no Lyme disease where I live, so I cannot have Lyme disease. Is this right?

This is not correct. The guideline states that “infected ticks are found throughout the UK and Ireland, and although some areas appear to have a higher prevalence of infected ticks, prevalence data are incomplete”. You could catch Lyme disease anywhere in the UK or Ireland or in many foreign countries as well.

I have all the symptoms of Lyme disease after a holiday when I got some nasty mosquito bites. The doctor refuses to test me for Lyme disease because he says mosquitoes cannot transmit Lyme disease. Is this true? 

There is no evidence that mosquitoes can transmit Lyme disease. However, it is possible you were also bitten by a tick without feeling it or seeing the tick. The guideline states “tick bites may not always be noticed.”

What does the guideline say about sexual intercourse and Lyme disease transmission?

The guideline does not mention sexual transmission of Lyme disease. There is no evidence currently that Lyme disease is or is not transmitted sexually. This question has not yet been researched.

I think I might have caught Lyme disease from a blood transfusion. Is this possible?

It is not currently known whether or not this happens. Some research was done which seemed to indicate Lyme disease bacteria can survive being stored in blood bank conditions, which means theoretically it could be possible. However, so far there isn’t any evidence of this being proven to have happened in real life.

In reality, many of the people who catch Lyme disease do not know when or how they caught it. Remembering a tick bite, for example, can add weight to a suspicion of Lyme disease, but not having knowledge of how Lyme disease could have been caught should not be considered evidence against Lyme disease.

My doctor says that because the tick which bit me can only have been on me for 12 hours, I cannot have caught Lyme disease. Is this right?

Being aware of one tick that was attached for less than 12 hours is not proof that you do not have Lyme disease. This is not stated in the NICE guideline.

It is known that the risk of catching Lyme disease is higher if the tick has been attached for a longer time, but there is not a proven minimum time for transmitting Lyme disease. It is difficult to know the amount of time a tick has been attached.

It is also possible you were bitten by another tick that stayed attached for longer, either at the same time or during the past 3 months, without noticing it.

Can you still catch Lyme disease if you remove a tick correctly?

Yes. Incorrect tick removal may increase the risk of Lyme disease, but correct tick removal cannot prevent it.

Incorrect removal means squeezing a tick’s body while it is attached and feeding. This may increase the risk of the tick ejecting Lyme disease bacteria into your bloodstream.

Delay in removing the tick also increases the risk of catching Lyme disease. The minimum time a tick needs to be attached to transmit Lyme disease is not proven, but the longer it is attached and feeding, the more risky.

Transmission of Lyme disease can only happen if the biting tick carries Lyme disease bacteria, from biting an infected animal before biting you.

Correct removal should avoid squeezing the body of the tick, and should extract the feeding parts of the tick, which reduces the risk of the bite area going septic. (Extracting the feeding parts can reduce the risk of the bite going septic but it does not have an effect on the likelihood of catching Lyme disease.)

Link: How to remove a tick safely

What does the guideline say about women who are infected with Lyme disease while they are pregnant? Will their babies be infected with Lyme disease or harmed in other ways?

There is very little conclusive published evidence on this, but it is believed that Lyme disease could be transmitted to the baby, or that the infection could harm the development of baby.

The NICE guideline states that the risk of these things is thought to be very low. It says this because there is currently no conclusive evidence that the risk is high. However, there is no reliable evidence on how high or low this risk may actually be.

It is extremely important that any pregnant woman with Lyme disease takes the full course of antibiotics to treat it. There are antibiotic options that are safe for developing babies.

If a mother notices anything that could give cause for concern about the baby’s health, the NICE guideline states that the new-born baby should be referred to a paediatric infectious diseases consultant to discuss which Lyme disease tests are appropriate. Babies born to mothers with Lyme disease should be treated for Lyme disease under the care of a specialist, if their Lyme test has a positive result, or if there is any other reason to suspect they may have Lyme disease.

The guideline section about infected babies, and Lyme disease in pregnancy, is brief and somewhat vague. Always ask your doctor to test your baby if you have any suspicion whatsoever that you may have transmitted Lyme disease during pregnany.

Diagnosis and Testing

I was bitten by a tick and 10 days later I have various symptoms that could be Lyme disease, but no rash. My doctor says he cannot give me antibiotics without a positive test result. Is this correct?

This is not correct according to the NICE guideline. If a doctor has a very high level of suspicion of Lyme disease, he/she can prescribe a full course of antibiotics to treat Lyme disease before the blood test result becomes available, or even if the blood test result comes back negative.

If the test result is negative, but was carried out less than 4 weeks after the tick bite and you still have symptoms, your doctor should order another test. If you still have symptoms after 12 weeks, your doctor should also order another test. However, your doctor is advised to consider other possible causes of your symptoms at the same time. He may decide to order additional tests and discover another condition which he can treat. If he is still convinced that Lyme disease is more likely than any other diagnosis, he can prescribe you treatment for Lyme disease even if the test or tests had negative results.

I have many symptoms of Lyme disease but my test was negative. What shall I do?

Lyme disease tests can sometimes produce incorrect negative results. The important message in the NICE guideline is that the doctor should not rely just on the test, but should consider a diagnosis based on symptoms, or consider repeating the test under various circumstances.

However, the doctor should consider other possible diagnoses as well. There is a very large number indeed of other medical conditions which have overlapping symptoms with Lyme disease. These include viruses, autoimmune conditions, and other more serious illnesses including various types of cancer. The Lyme disease guideline advises doctors to diagnose and treat Lyme disease with a negative test if the symptoms fit, but he can only safely do this if he has considered, investigated and ruled out other plausible diagnoses.

Don’t hesitate to ask your doctor to talk you through all the conditions he is considering. Doctors will generally have a ranking of how likely they think each condition may be, prior to ordering tests, which you may wish to ask about.

Suggestion: You could write a list of your symptoms, in descending order of how much they are affecting your life, and give this list to your doctor to discuss. Try as much as possible to explain how severe each symptom is by using examples of what you could do before you became ill and what you can do now, rather than just using adjectives like “very bad”.

If you have a lot of symptoms in one particular category, it might be worth discussing with the doctor whether they think it would be useful to refer you to a specialist, for example, a neurologist if you have a lot of neurological symptoms or maybe a rheumatologist if you have joint pains.

My doctor said that my bull’s eye rash is a Lyme disease rash, and he has ordered a blood test. He says I have to wait for the result of the test before he will prescribe antibiotics. Is it right to make me wait for the test before I can start treatment?

The guideline states that if you have a Lyme disease rash, called erythema migrans, the doctor should prescribe antibiotic treatment without ordering a blood test. The only reason to order a blood test would be if the doctor is not certain that the rash is a Lyme disease rash. Although some Lyme disease rashes are very distinctive, they may also look like rashes caused by other diseases so the doctor may not be certain of this diagnosis.

It is believed that people are more likely to recover fully from Lyme disease if they are treated without delay. If your doctor is delaying treatment but he does think Lyme disease is possible, there is a risk the Lyme disease could become more difficult to treat.

You may wish to go back to your doctor and ask whether he is willing to prescribe you a full course of antibiotics to treat Lyme disease before the test result arrives.

Lyme disease antibodies can take several weeks to develop – it is thought up to 6 weeks. If the test was done sooner than this after the tick bite, it may have an incorrect negative result. In this case, the guildeline states that the test should be repeated at a later date, when the antibodies would have had time to develop.

I had a Lyme disease several years ago and recovered with antibiotics. Last week I had another tick bite and have all the same symptoms. I have had a Lyme test which is positive but the doctor says that this will be the antibodies from the last infection and this is probably just a virus. What should I do?

The guideline states that having Lyme disease does not mean you cannot catch it again. If you have the same symptoms as before, it is certainly possible you have Lyme disease again.

If your doctor believes this is not the case, you may wish to ask him/her to explain the reasoning behind the current diagnosis. With a positive Lyme disease test and no positive viral infection test, it could be regarded as reckless to avoid using a standard course of antibiotics to treat Lyme disease.

What is the best test for Lyme disease?

The only Lyme disease test that has been validated, meaning independently evaluated to find out how reliable it is for diagnosing patients, is the one offered by the NHS. It is a two-step test, firstly the ELISA and then a different type of test is done to double check the result, called a Western Blot. Therefore it’s the only test that can be recommended based on scientific evidence.

This two-tier test can sometimes produce incorrect results, which is why it is very important that the doctor first considers how likely Lyme disease seems, based on your symptoms. The test is only one part of the evidence that should be taken into consideration.

There are private labs which offer many other types of test for Lyme disease. Some of them may be very promising, and some of them are types of test which are already used to diagnose different diseases, but they have not yet been independently evaluated for diagnosing Lyme disease. This means nobody can say how accurate they are. (There are also other issues to consider with alternative tests, not just questions of accuracy. Some types of test can take many weeks to produce the result, meaning they could be useful for research but are not practical for diagnosing patients who need an answer, and to start treatment, without such a delay.)

Which is the best laboratory for private Lyme disease testing? 

Caudwell LymeCo does not recommend private laboratories for Lyme disease testing. Many private laboratories offer types of test that have been validated for diagnosing Lyme disease. (See Lyme disease testing.) Tests which have been validated are the same tests offered by your NHS doctor, and when done in a private laboratory they are likely to produce the same result.

NHS doctors do not normally prescribe treatments based on private tests. If a patient has a positive test result from a private laboratory, the NICE guideline recommends the doctor ask about symptoms and considers ordering an NHS test to compare the result.

I have read that the NHS Lyme Test was highly inaccurate with a lot of false negatives. Is this true?

Lyme disease tests can get incorrect negative results and also incorrect positive results. The research is not good enough quality to put a percentage on it, but doctors believe it gets the right answer more often than it gets the wrong answer.

There are various scenarios in which the test can get an incorrect negative result.

  1. Test done too soon:
    The Lyme disease tests find antibodies to the bacteria produced by the infected person, not the bacteria themselves. Antibodies to Lyme disease usually take several weeks to develop, so if the test is done too soon after a person develops Lyme disease, the result could be an incorrect negative.
  2. People don’t produce antibodies:
    In all infectious diseases, it is known that some people never produce antibodies even though they are infected. For the diseases in which this has been researched, it is believed to happen very rarely. It is not known how commonly seronegative Lyme disease (Lyme disease without detectible antibodies) may happen. There is some interesting early evidence suggesting that the immune system does not run to the expected course in Lyme disease. There are theories on various ways that Lyme disease bacteria could manipulate or evade the immune system, with the result that antibodies may not be produced for periods of time during the course of an infection. More research is needed on this aspect of the infection, which has serious implications not only for diagnosis but for the effects and the course of the disease.
  3. Test makes mistakes:
    There is the possibility that the test has simply produced the wrong results. Again, we know this happens, but not how often.

The test can also produce incorrect positive results, for various reasons:

  1. Other infections:
    If a person has certain other infections, the second part of the two-step Lyme disease test (western blot) can have an incorrect positive result. These infections include glandular fever, syphilis and other related types of Treponema infection, leptospirosis, HIV and possibly some strains of flu.
  2. Autoimmune and other diseases:
    Some autoimmune diseases, ALS and Multiple Sclerosis can produce an incorrect positive result in the western blot Lyme disease test.

Link to source: Viramed Laboratory Diagnostics

Given that the test is not truly reliable, the only way to go is for the doctor to make a judgement by looking at all the clues together, which would include the symptoms, and Lyme test, and tests to check for and potentially rule out other illnesses. Your doctor may want to consider other potential explanations for your symptoms – many of which can be ruled in or out using very reliable tests – before settling on Lyme disease which has a less clear-cut method of diagnosis. The guideline also advises repeating the Lyme disease test more than once in various situations.

Additional information

For additional information on Lyme disease testing and a detailed testing FAQ, visit our page Lyme Disease Testing

Finding a Doctor

Can you recommend an NHS Lyme disease specialist in the UK?

We do not recommend individual doctors to treat Lyme disease.

On the NHS, Lyme patients in the UK are generally seen by their GP, and possibly referred to consultants in various disciplines (infectious diseases, rheumatologists, neurologists etc). The specialist should be selected based on which symptoms are the worst. Infectious diseases consultants are sometimes chosen when the diagnosis is uncertain, but in dealing with symptoms, a different specialist may be more appropriate. These doctors are specialists in various clusters of symptoms or body systems, rather than in Lyme disease itself.

Based on feedback from a large number of patients with suspected or confirmed Lyme disease, this charity believes that a significant proportion of infectious diseases consultants in the UK take little interest in Lyme disease and in assessing patients for suspected Lyme disease. More worryingly, we sometimes receive reports from patients who feel “abandoned” by their infectious diseases consultant when standard courses of treatment have left the patient still with very severe symptoms. Comments submitted by their professional body, the British Infection Association, on the draft NICE guideline for Lyme disease unfortunately served to reinforce rather than dispel this belief. This does, of course, not apply to all infectious diseases consultants. If you feel dissatisfied with the assessment of an infectious disease consultant we suggest you consider discussing with your GP the possibility of being referred to a consultant in a different field of specialisation.

If your GP needs help finding someone, he or she may wish to phone the National Reference Laboratory (the Rare and Imported Pathogens Lab) as their experts are well networked and may be the best positioned to suggest a suitable consultant.

The NHS lacks Lyme disease specialists. One of the things we as a charity are hoping to see in the future is a few NHS hospitals become “Centres of Excellence” for Lyme disease, where doctors from various disciplines see higher number of Lyme disease patients and start building up clinical experience.

Can you recommend a good doctor to treat Lyme disease privately?

We do not recommend individual doctors who treat Lyme disease privately, nor doctors who use treatments outside those recommended by the NHS. This is because there is no way we can predict what the outcome will be for any patient. There is currently a completely unsatisfactory situation whereby we know that the so-called “standard” treatments fail to cure lots of patients, but we do not know what actually will cure them.

Treatments for Lyme disease that go beyond the two “standard” courses of antibiotics recommended in the NICE guideline (3 weeks in most cases) have not been formally trialled, or the outcome demonstrated, in published research. This means that they are formally defined as “experimental”.

This definition seems illogical, when the treatment consists of using the same antibiotics as are recommended in the NICE guideline, but prescribing additional courses until the symptoms have cleared up. This is the approach used by NHS doctors in many other infections when the standard length of treatment evidently has not cured the patient.

The reason Lyme disease is different from some other infections is because we already know that some patients can have symptoms for months, years or even permanently after the infection has been eradicated. There is no reliable test that can tell us whether a person still has the infection or not. This means that taking more antibiotics to try to eradicate the infection is a gamble. Some patients have taken additional antibiotics for months or even years, and their symptoms still remain. There is some research suggesting Lyme disease can damage the immune system and create symptoms that will never go away, even if the original infection is eradicated. It is also well known that Lyme disease can cause damage to the nerves or joints in some people, resulting in a huge range of symptoms, which may never heal, or may heal over months or even years after the infection has been eradicated.

We have heard anecdotal reports from patients of a large number of different private doctors. Some people improved with their treatments, which include longer courses of antibiotics and in some cases a variety of other therapies as well, some felt worse and some experienced no change at all. There is no individual doctor, or doctors, who to us seem to stand out as having a higher success rate than the others. Our conclusion from this is that getting a cure is not just about choosing the right doctor. The key question is whether you still have the Lyme disease infection, or if you actually have permanent damage.

We know that this situation is highly unsatisfactory. We would not discourage any patient from seeking the help of a reputable private doctor to try to improve their health after suffering the devastating effects of Lyme disease. We would just like to emphasise that with any doctor you may choose, a successful outcome cannot be guaranteed.

Lyme Disease Treatment

What is the best treatment for Lyme disease and can it be cured?

The conventionally accepted treatment for Lyme disease is antibiotics. In most cases the initial course of treatment is 3 weeks, although in some cases another 3 week course is prescribed, bringing the total to 6 weeks. Your doctor will use the NICE guideline table to select the recommended antibiotic based on your symptoms and on whether or not you may be pregnant. The NICE guideline for Lyme disease contains tables with the details of the treatments prescribed based on symptoms.

According to the published research, a little more than half of patients are cured by these treatments. The statement in the NICE guideline which says “most patients recover completely” is based on this low quality research evidence. We do not really know how many real-life patients in the UK genuinely do recover fully. At Caudwell LymeCo we hear from so many patients who have not recovered fully, and from so few who have done (even though they do exist!), that we sometimes find it difficult to be optimistic about this.

Some patients continue to experience symptoms, for various reasons.

  1. In some cases the infection may still not be gone after 6 weeks of antibiotics, although there is not a test available to check reliably whether this is the case.
  2. Body tissues, including nerves and joints, may have been damaged by the infection; in this case, they may take months or even years to heal, and some symptoms may be permanent.
  3. It is possible to have Lyme disease and another condition at the same time, and so if symptoms do not go away with antibiotic treatment, it is important to evaluate whether there may also be another condition causing some, or even all, of the symptoms.

My friend with diagnosed Lyme disease has been referred to a cardiologist rather than an infectious disease consultant. Why?

In some cases, Lyme disease can cause symptoms in the heart which may be serious. A person with Lyme disease in this situation would be referred to a cardiologist to take whatever measures are necessary to deal with their cardiac symptoms. This may include extra treatments in addition to antibiotics, which could require the specialist knowledge of a cardiologist.

My daughter was diagnosed with Lyme disease with a bull’s eye rash and a blood test and given antibiotics for 3 weeks and then another 3 weeks, but she is still too ill to go back to school. She doesn’t want to play at all and she keeps getting fevers, night sweats, swollen glands, ear and throat infections, “tingly feelings” in her legs, and her whole body hurts. A consultant said she may have “multiple viral infections” but didn’t offer any help. What can we do?

The way your daughter has continued to be really ill after catching Lyme disease is something that happens often, and to our great frustration, there isn’t any scientific evidence or test that can tell doctors what to do.

  1. One possibility is obviously that the infection could still be there, suggesting more antibiotics are the answer.
  2. Sometimes the immune system is damaged in some way and other infections come along, wreaking havoc while the body is weakened.
  3. A third situation that can happen with Lyme disease is tissue damage. For example, the type of tingling that your daughter has can last for months or even years while the injured nerves heal slowly.
  4. There is also the possibility that, although she had Lyme disease, she also had another infection or condition all along that still hasn’t been diagnosed.

One thing that is apparently lacking for you is a proper explanation of everything. Vague answers such as “multiple viral infections” should never be regarded as satisfactory, nor as the “end of the line” for any patient who continues to be very ill.

You may wish to ask your doctor for a high quality conversation, explaining you want a full understanding of their thinking on all of this. It may be useful to write down your daughter’s symptoms ranked by how bad they are, and give this to the doctor to structure your discussion around their interpretation of each of the persisting symptoms.

You may find it useful to ask your GP which specialists may be able to investigate further. Even if you have seen a consultant already, you are entitled to have a second opinion from another NHS doctor, either with the same specialisation or a different one.

The fact that your daughter has constantly inflamed glands and seems to have a weakened immune system suggests it may be worth asking to see an immunologist or infectious diseases consultant, or possibly even a rheumatologist to look at autoimmune conditions.

You are entitled to have copies of the results of every test carried out on your daughter (you can be charged for photocopying) and referral and diagnosis letters written about her. Doctors are aware that patients tend to make such requests when they are losing confidence in their doctor.

My son caught Lyme disease and has just finished a 3 week course of doxycycline. The rash has gone but he still has headaches, fatigue, tingling feelings in his arm and struggles to concentrate on schoolwork. What can the doctor do?

You should take your son back to the doctor without delay and ask him to evaluate whether your son needs a second course of antibiotics.

Unfortunately there is not a reliable blood test that can answer this question. The doctor will look for clues suggesting that the infection which causes Lyme disease may still be present. She will consider how your son’s symptoms have changed during treatment, and should be told about any signs of continuing infection. These might include fevers, swollen or painful glands in the neck or other places, night sweats, and general flu-like aches and pains. 

Various antibiotics are prescribed to treat Lyme disease. If the doctor does think that your son needs more antibiotics, he should prescribe a different antibiotic from the one he originally prescribed.

Some people take time to heal from the type of tissue damage that Lyme disease causes, and may simply need to wait after treatment rather than have more antibiotics.

If a person has absolutely no improvement at all during treatment for Lyme disease, the doctor has to consider whether the original diagnosis was incorrect and perhaps there may have been some other cause of the symptoms that was missed. Some unlucky people may have Lyme disease and another condition at the same time, which the doctor may need to consider. Lyme disease has the same symptoms as some extremely serious illnesses, which is why it is very important to co-operate with the doctor if he orders additional tests. Some patients may find this process frustrating or frightening, and if so it is important to aim to have clear conversations with your doctor to understand what possible diagnoses he may be considering, and why.

The doctor should continue monitoring your son for as long as he has symptoms, and consider whether it is necessary to offer additional treatments or other types of support.

Can a doctor prescribe antibiotics for longer than the guideline says, or different antibiotics, or higher doses?

The guideline recommends a specific course of antibiotics, which vary depending on the symptoms but last 3 weeks in most cases, when a patient is diagnosed with Lyme disease. It recommends a second course, following the same treatment lengths, if the first course seems not to have cleared up the infection.

If a patient is not better after being treated with two courses of antibiotics for Lyme disease, there are various possible explanations. The guideline lists them, and one of them is the possibility that the infection is still present. The doctor should evaluate which explanation seems most likely and, if he believes that there is an ongoing infection, he may prescribe additional antibiotics. The guideline advises the doctor not to do this routinely and encourages him to discuss the patient with expert colleagues, however it does not recommend that he does not prescribe any more antibiotics. Therefore if a doctor were to prescribe more than the usual one or two courses of antibiotics, he would not be acting against the guideline.

If this second course also fails to eradicate the infection in the doctor’s judgement, the guideline does not state a specific length of time or any details about additional treatment. This means the doctor may make his or her own decision. Doctors are guided to make decisions like this based on what they believe a responsible group of other doctors would do in the same situation.

The guideline recommends that the doctor discusses the patient’s case with the National Reference Laboratory (which carries out the Lyme disease testing, and has microbiologists and clinical doctors able to discuss individual cases with GPs) and/or discusses or refers the patient to a consultant. The purpose of this discussion should include whether additional types of tests are necessary to double-check if Lyme disease was the right diagnosis, and to consider what other diagnoses may be possible, which may include other tick borne diseases or entirely different medical conditions.

The guideline recommends, first, second and wherever possible third choice antibiotics to treat Lyme disease. It is unlikely that a patient would be unable to tolerate any of these choices however, if a patient had drug allergies or another situation making the use of the recommended antibiotics unsafe, the doctor would be able to consider a different drug option.

Co-infections

I have heard that co-infections are a very important aspect of most Lyme infections and yet the guideline says nothing about co-infections. Why not? What should my doctor do about co-infections?

The NICE guideline advises doctors to consider co-infections in section 1.2.20 and in section 1.3.12.

Doctors should consider co-infections, notably other tick-borne infections, if the second step in the two-step Lyme disease test is negative but the patient still has symptoms. They should also consider co-infections if a patient has been prescribed two standard courses of antibiotics but has not recovered.

The two additional tick-borne that the National Reference Laboratory tests for in the UK are Anaplasma and Q-Fever. Other tick-borne infections may not be tested for unless you specifically state that you have travelled abroad to place where they are known to be a risk.

There is very little published research on any of these infections, and there are no NICE treatment guidelines on them.

Chronic Lyme Disease

I caught Lyme disease and was treated for it some years ago. I have been ill with various symptoms ever since. Why has my doctor referred me to a rheumatologist to investigate these, not an infectious diseases consultant?

It may be helpful to discuss this question with your GP.

An infectious diseases consultant may be the most appropriate specialist in new cases where the diagnosis is uncertain, and the GP would like her patient to be evaluated for the likelihood of Lyme disease against other infections.

However, if you have a variety of longer-term symptoms in different parts of your body which include joint pains and may include immune system problems or other very varied symptoms, a rheumatologist is likely to be the better specialist at evaluating the situation. It is thought that Lyme disease may be able to damage the immune some way, or may be able to trigger auto-immune diseases in people who are predisposed to develop them. Although there is no conclusive research information on this, rheumatologists have a broad knowledge in this field and are likely to be able to offer more insight on this aspect of the effects of Lyme disease.

By the same rationale, a doctor might suggest a patient with ongoing nervous system symptoms sees a neurologist.

There may be other consultants who could help you, depending on your symptoms. You should ask your GP about which would be the best type of specialist for you to see if this has not already been discussed.

I have had Lyme disease for many years. My doctor has treated me with antibiotics but I am still not better. I don’t know if he even believes I still have Lyme disease. I struggle at home because of pain, fatigue and mental health problems and my partner has left me and I am without an income. What can I do? 

This is the worst situation for a Lyme disease patient. We know far too many people in the same situation in the UK, who have been left with devastating effects from Lyme disease and who have given up asking their doctor for more ideas on how to help.

Your first step should be to discuss with your GP if he/she can refer you to any specialists to investigate the knock-on effects that the Lyme disease infection may have had on your body. (This is assuming you don’t have any of the classic signs of ongoing infection such as swollen glands, night sweats or fevers, in which case you should tell the doctor about these and ask about trying additional antibiotics.) Lyme disease can cause permanent damage to the nerves, and a neurologist may be able to gain a better understanding of this and advise on how better to treat the symptoms of it, even if it is not curable. Lyme disease is also believed to be able to damage the immune system in people who are genetically predisposed to problems of this kind, and although this is an area where nothing is proven and we only have theories, a rheumatologist would be able to assess you for a variety of known diseases caused by an immune system that is not behaving in a normal way.

Write a list of all your current symptoms, ranked by how badly they are affecting you, and give this to your doctor to talk through which specialist may be the most appropriate to investigate them.

If you have fully exhausted additional investigations of this kind, this does not mean that your doctor should be offering you no further help. The least he can do is discuss the symptoms that you have, and tackle those individually. This might include being referred to a pain clinic, discussing whether the painkillers you are currently being prescribed are the best you could be using, whether tablets to help with anxiety or other mental health therapy or help could be useful, and any other symptoms which might be relieved with his help.

Appointments with GPs have a standard length of 10 minutes. If you have a lot to discuss and know that you will need more time, ask the receptionist to book a “double appointment” so you will have 20 minutes with the doctor. Write a list of the points you want to discuss and give this to the doctor at the start of the appointment, so he/she knows everything you need to cover.

This discussion should also cover the things you can no longer do for yourself as a result of your illness. The Lyme disease guideline says that your doctor should support you in applying for state help, which might include benefits and help at home. The usual procedure it to get a social worker, who knows which kinds of help are available and can help you apply for what you are entitled to.

The assessments consider what you are able to do, not the cause of your problems. This means it is not relevant whether your doctor believes you still have Lyme disease or not, and Lyme disease does not need to be discussed or mentioned when you are being evaluated.

The NICE Guideline for Lyme Disease

What is the legal standing of the NICE guideline for Lyme disease? Does my doctor legally have to follow the guideline?

Health professionals have a legal, contractual and ethical duty to act in the best interests of the patient, and the minimal acceptable standard of care is measured against responsible medical practice, and not against guidelines. The important question is: would an action that the doctor is considering be supported by a responsible body of colleagues? This means there is not, per se, a legal obligation for a doctor to follow NICE guidelines.

However, NICE guidance carries great weight as it is arrived at by considering the best available evidence and expert professional advice. In reality, it is unusual for doctors to deviate from this advice. It would be most likely in the case of an unusual patient who differed from the usual cases described in the guideline.

Because of this importance attached to the guideline, it does set a minimum standard of care that a patient can expect to receive. It would be very difficult indeed for a doctor to legally justify not prescribing the treatment or performing all the tests recommended in the guideline, for example.

In general, what does it mean if the guideline does NOT say something about a certain aspect of Lyme disease?

To make a treatment recommendation in a NICE guideline, the committee needs to find research evidence from a treatment trial which shows how many patients are cured, and how many patients experience an improvement in symptoms, as a result of taking a specific treatment. In the case of Lyme disease persisting after standard treatment, this would mean evidence on a specific antibiotic, taken at a specific dosage, for a specific period of time.

The guideline does not specify antibiotic treatments for Lyme disease which persists beyond standard courses of antibiotics, for two reasons. The first reason was that there is no reliable test which can establish whether the infection is actually still present in a patient. We know that this can happen but we do not know how to identify which individual patients this happens to. The other reason is that no adequate evidence was found which could tell the guideline committee which antibiotic treatment would be a successful treatment in such cases. Very little research has been done to try to answer this question so far.

For this reason the guideline does not specify what the doctor should do. It leaves the question open for the doctor to make the decision he feels is best for his individual patient.

What are the research recommendations made by the guideline and how will they help future Lyme patients? Could there be any role for current Lyme patients in this research?

You can read a summary of the research recommendations here.

There is a recommendation to gather Lyme disease patient information and notes and start building up a picture of the commonest symptoms in UK patients. This would only include patients who have had a positive NHS test for Lyme disease, however. There is also a recommendation to evaluate diagnostic tests that are currently only available from private labs. They include several recommendations that concern patients who are chronically ill because of having Lyme disease.

So far the government / Department of Health has not pledged any research funding at all for Lyme disease. None of this research will happen unless that changes.

Additional information

For a summary of what the guideline says, and an FAQ on why it says what it does, visit our page What does the NICE Guideline for Lyme disease say?

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