Stakehold

This probably requires clarification.

Thank you for your comment. We have deleted this phrase.
Caudwell LymeCo	7	146- 147	SUGGESTED AMENDMENT Delete "There is controversy over the existence of 'chronic Lyme disease' or 'post- treatment Lyme disease syndrome'." REASON There is no longer controversy over the existence of these conditions, but rather, controversy over what these terms mean. This is because a) they are eccentric terms that don't use standard medical terminology, and b) because there are, regrettably, still many doctors who have failed to keep up to date with newer research and still believe the old assumption that Borrelia is easy to cure with a short course of antibiotics. EVIDENCE There are around 700 peer-reviewed research papers documenting cases of refractory Lyme disease, which are conveniently gathered together by Dr. Richard Bransfield, author of what are currently the only operational Lyme disease treatment guidelines in America (ILADS guidelines) http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection- associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/	Thank you for your comment. We have made edits to this section and removed the speech marks and changed ‘controversy’ to ‘uncertainty’.
Caudwell LymeCo	7	152	SUGGESTED AMENDMENT Delete "Public health England estimates that between 2000 and 3000 people develop it each year in the UK..." REASON This "estimate" by Public health England is actually a guess rather than an estimate. In a freedom of Information request, I asked their methodology and they had none. (the FOI response is online at https://www.whatdotheyknow.com/request/313568/response/773785/attach/html/2/551%2 0FOI%20Lyme%20testing%20reply.pdf.html please refer to item 11.) EVIDENCE On behalf of the Caudwell LymeCo charity I have conducted a survey of close to 500 UK patients, diagnosed the RIPL and in a few selected foreign labs, and extrapolated the results to formulate an estimate which comes to around 45,000 new Lyme disease cases per year in the UK. I plan to publish this research online, explaining my input data and methodology.	Thank you for your comment. The figures provided by Public Health England are an estimate only. We note that the actual number of infections might be much higher context and further acknowledge that the true incidence in England remains unknown. We would encourage you to publish your evidence to inform the debate.
Caudwell LymeCo	7	158- 159	SUGGESTED AMENDMENT It would be useful to add to this the fact that only 10% of patients actually have any idea of when a tick bit them. REASON The majority of tick bites are by nymphs, which are no larger than a poppy seed and patients are unaware of their presence and unable to say how long they have been attached. EVIDENCE I am not aware of any objective, laboratory-based research into the relationship between the duration of tick attachment and the probability of Lyme disease infection in humans, which is the only way to assess this without relying merely on the subjective accounts of patients.	Thank you for your comment. We note that not all patients are aware of having been bitten by a tick. This is captured in an earlier part of the context section. We do not feel that an exact figure should be included in the scope as we are unaware of any evidence to support this.
Caudwell LymeCo	8	167	SUGGESTED AMENDMENT Delete "People with positive tests are treated" REASON This is not true in many cases. EVIDENCE In a Caudwell LymeCo patient survey of roughly 500 UK patients, we asked patients how many weeks of antibiotics they had been given on the NHS after their positive Lyme disease blood test, and 52% of them responded 0. Very few of them were given the full duration of antibiotics currently recommended by PHE treatment guidelines.	Thank you for your comment. This sentence has now been changed to address your comment.
Caudwell LymeCo	8	167 - 168	SUGGESTED AMENDMENT "If the test is negative but symptoms persist, repeat samples are sent 3-4 weeks later." REASON In reality, this very rarely happens. EVIDENCE The typical patients' experience with their GP in Britain is that, after one negative or even equivocal test, they are told they do NOT have Lyme disease and their doctor refuses to contemplate a second test.	Thank you for your comment. The ‘current practice’ section is a standard section in NICE guideline scopes and aims to describe current standard practice (in this case the PHE guidance) rather than level of uptake of guidance. We acknowledge the concerns about repeat testing; however the aim of this section is to summarise the PHE guidance and not comment on its implementation. The guideline will examine available evidence and make recommendations in this area if there is evidence to support this.
Caudwell LymeCo	DQ1		PLEASE COMMENT ON 1) Is the time period of ‘< than 6 months since tick bite or first symptoms or signs’ an acceptable interpretation for ‘early Lyme borreliosis’? COMMENT No, and "early lyme borreliosis" is not an acceptable term either because it is not useful either for diagnosis or for treatment decisions. Please refer to my proposed category definitions in point 8.	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Caudwell LymeCo	DQ2		PLEASE COMMENT ON 2) Is the time period of ‘> 6 months since tick bite or first symptoms or signs’ or an acceptable interpretation for ‘late Lyme borreliosis’? COMMENT No, and "late Lyme borreliosis" is not an acceptable term either because it is not useful either for diagnosis or for treatment decisions. Please refer to my proposed category definitions in point 8.	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Caudwell LymeCo	DQ3		PLEASE COMMENT ON 3) The use of the British Infection Association1 position paper classification to determine the range of clinical presentations that will be considered. COMMENT This list of symptoms and clinical manifestations is woefully inadequate. it neglects to mention some of the commonest symptoms and focuses instead on those which, as it states, affect around 1% of patients. A proper list of clinical manifestations and symptomatology (with prevalences of each symptom in the UK) needs to be developed by the committee on the basis of evidence gathered among UK patients. Recycled evidence from America that does not apply to UK patients will not be particularly useful.	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Caudwell LymeCo	DQ4		PLEASE COMMENT ON 4) The inclusion of the following strains of Lyme Borreliosis for consideration as part of our review of the evidence: •B. burgdorferi (and the subtype B. burgdorferi sensu stricto), •B. garinii, •B. afzelii COMMENT It would obviously be ideal to test for all known strains of Borrelia Burgdorferi sensu lato which can cause Lyme disease. However, given that this may be impractical within the limitations of current western blot testing, I would propose that the Borrelia Valaisiana be included as a bare minimum since it may be the Borrelia strain involved in around 7% of Lyme disease cases in Europe. EVIDENCE For example, Habálek, Z.; Halouzka, J. (1997-12-01). “Distribution of Borrelia Burgdorferi sensu lato genomic groups in Europe, a review“. European Journal of Epidemiology	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Caudwell LymeCo	DQ5		PLEASE COMMENT ON 5) The appropriate diagnostic tests for consideration COMMENT At the original scoping meeting, a long list of diagnostic tests was presented. There is no logical reason or evidence at this stage that could justify excluding any of those tests from being investigated and evaluated in terms of their sensitivity and specificity. Whether or not they are chosen for use by the NHS, there may be patients who pay for those tests privately. Duly evaluated, objective data on their sensitivity and specificity should be provided to these patients' doctors in a transparent manner.	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Department of Health			Thank you for the opportunity to comment on the draft scope for the above clinical guideline. I wish to confirm that the Department of Health has no substantive comments to make, regarding this consultation.	Thank you for your comment.
Healthcare Infection Society (HIS)	Gener al	Gen eral	The Healthcare Infection Society has received no comments on this consultation	Thank you for your comment.
Lyme Disease Action	1	5	Using a title of Lyme borreliosis, rather than Lyme disease, would bring the guidelines into line with the rest of Europe. European Lyme borreliosis is recognised to be different from Lyme disease in the USA, due to a greater variety of genospecies and strains of Borrelia endemic in Europe.	Thank you for your comment. We have decided to use the title Lyme disease as it is a widely accepted term which we feel is more accessible to non-healthcare professionals than Lyme borreliosis. In addition it directly reflects the commission received from NHS England. The guideline committee will make the final decision on whether to include evidence from outside UK and Europe.
Lyme Disease Action	2	31	We feel that individual consideration should be given to immunocompromised people and pregnant women in whom diagnosis may be more difficult and treatment may be different.	Thank you for your comment. The guideline committee will review the evidence about diagnostic test accuracy and management strategies in pregnant women and immunocompromised people. It is anticipated that these populations will form sub-groups in each of our evidence reviews to ensure that, where evidence exists on these issues, the committee are able to make evidence-based recommendations for the NHS. Where no evidence is available, the committee may be able to make research recommendations. These subgroups have been included in the equality impact assessment for this guideline.
Lyme Disease Action	2	38	Consideration at assessment should be given to ‘red flags’ such as severe neurological, cardiac and ophthalmic complications requiring specialist referral, and also special groups such as pregnancy and immunosuppression. See also comment on line 50 of the scope.	Thank you for your comment. We will pass the detail of your comment related to severe neurological, cardiac and ophthalmic complications to the guideline committee for their consideration as they develop protocols linked to the appropriate management for different presentations being considered The guideline committee will review the evidence in pregnant women and immunocompromised people. It is anticipated that these populations will form sub-groups in each of our evidence reviews to ensure that, where evidence exists on these issues, the committee are able to make evidence-based recommendations. These subgroups have been included in the equality impact assessment for this guideline.
Lyme Disease Action	2	39	In addition to clinical assessment mention should be made of the value of including assessment of risk of tick exposure and tick bite in the period prior to onset of symptoms, including assessment of travel history.	Thank you for your comment. This guideline will include assessment of risk of tick exposure and tick bite in the period prior to onset of symptoms as part of the topic area on assessment (history and examination).
Lyme Disease Action	2	40	Remove "confirmatory" as it implies this leads to a diagnosis and it may not. Perhaps “first and second tier serology testing and the use of PCR” instead	Thank you for your comment. We believe that the term ‘confirmatory’ is a widely accepted term for second line tests after initial testing. We do not feel any change is necessary.
Lyme Disease Action	2	40	Suggest that item 2 is Testing (first and second tier tests) and that an additional point “Diagnosis” is introduced. Diagnosis is the result of assessment, investigations and tests which are building evidence to inform a diagnosis. 2nd line serology tests may yield false positives, especially in areas where seroprevalence is high, and may give false negatives, so it is important to separate diagnosis from testing.	Thank you for your comment. The guideline will look at the role of second-line tests as part of diagnosis as well as assessment and investigations. We feel that this is adequately captured in the “key areas that will be covered” section and have not made any changes. The exact review questions to cover the key area of ‘diagnosis’ will be developed by the Guideline Committee at a later stage. An evidence review on diagnostic test accuracy will look at the likelihood of a test being false negative, for example. The Guideline Committee will take this into account and the findings from its other evidence reviews (for example, on assessment) when formulating recommendations.
Lyme Disease Action	2	41	This specifies Management to be “for example” treatment using antibiotics. It is unclear what other aspects to treatment might be covered - eg neuropathic pain relief, anti- inflammatories, treatment for unresolved facial palsy, physiotherapy for arthritis, pacemaker insertion etc. See our comment on section 3, Context.	Thank you for your comment. We have used the example of antibiotics as an illustrative example. The guideline committee will consider which other treatments of Lyme Disease are of relevance for the evidence review. This guideline will not address the management of conditions secondary to Lyme Disease although other NICE guidance is available in some of the areas that you mention such as in the management of neuropathic pain (https://www.nice.org.uk/guidance/cg1 73).
Lyme Disease Action	2	48	The information, education and support needs of healthcare professionals requires consideration.	Thank you for your comment. The information, education and support needs of healthcare professionals will be considered by the guideline committee and acknowledged as part of the work linking evidence to recommendations rather than as a formal review question. It is anticipated that the publication of the guideline will provide helpful information for healthcare professionals which may then be further developed by relevant groups.
Lyme Disease Action	2	50	Although this guideline will not cover management of other tickborne infections, it is important to mention somewhere in the guideline that co-infections eg. Anaplasmosis, may lead to more severe symptoms, interfere with test results and possibly also response to treatment as a result of immune suppression. See comment on line 38 re Red Flags. Public Health England Porton have identified cases of Anaplasmosis, and Lyme Disease Action has had experience of some cases via the help desk.	Thank you for your comment. The focus of this guideline is the diagnosis and management of Lyme Disease. We will bring your comments on the issue of co-infection to the guideline committee’s attention to ensure that this issue is appropriately addressed as part of our evidence reviews or in our sections where we link the consideration of the evidence to the recommendations made as appropriate. We will not however address the specific management of any co-infection and as such have made no change to the scope.
Lyme Disease Action	2	51	It is not clear why CFS is specifically named as fatigue due to Lyme borreliosis does not equate to CFS/ME. Other conditions such as multiple sclerosis, rheumatoid arthritis, Sjogrens Syndrome, etc are not mentioned, so why CFS.	Thank you for your comment. The remit of this guideline is the diagnosis and management of Lyme disease.The reference to the chronic fatigue syndrome /myalgic encephalomyelitis (or encephalopathy) guideline has been included to make it clear that the guideline will not cover management of fatigue as part of the CHF/ME. It is provided as an example of another NICE guideline that is available and is not intended to be an exhaustive list.
Lyme Disease Action	3	68	This should state “What symptoms, clinical signs and history”. A person’s clinical history and tick exposure is an important factor in acute Lyme borreliosis when symptoms plus history might indicate immediate treatment should be started. History is also important in late Lyme borreliosis.	Thank you for your comment. The diagnosis and management of Lyme disease will be covered in this guideline. The Guideline Committee will make recommendations based on the evidence identified. History taking is part of the draft question on in whom Lyme disease should be suspected and as such will inform the relevant recommendations made in the guideline.
Lyme Disease Action	3	68	Consideration should be given to adding development of a weighting table. This was one of the Top 10 James Lind Alliance Uncertainties ‘What key questions (clinical and epidemiological) should be considered to help make a diagnosis of Lyme disease in children and adults in the UK and would a weighting table be useful?’ This was also raised as a key area of uncertainty during the American Association for the Advancement of Science AAAS InnovationsX conference in Washington, USA 17/18 November 2015.	Thank you for your comment. After reviewing the evidence, the guideline committee will consider the most appropriate way to present the information. The committee can also make a research recommendation if this is considered appropriate.
Lyme Disease Action	3	69	Rephrase to simply “Diagnostic testing.” There is no current test which can confidently rule out Lyme disease and no test which can confirm currently active disease.	Thank you for your comment. This has now been amended to ‘Diagnostic testing for Lyme disease’.
Lyme Disease Action	3	7	Transmission should be included in the guideline. Clinicians need to know what evidence there is as this question will be raised in consultations.	Thank you for your comment. We have discussed your comment in detail and reviewed the decision to exclude other ways of transmission. Person-to-person transmission is now included as a key question in the scope. The review question and protocol will be developed by the Guideline Committee.
Lyme Disease Action	3	72	See answers to the directly posed question 3 re clinical presentations.	Thank you for your response to this question. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Lyme Disease Action	3	77	We do not see how someone would be considered to have late disease without symptoms or signs.	Thank you for your comment. We had intended for ‘without symptoms or signs’ to refer to the absence of either clinical signs or symptoms, and not the absence of both. For example a person could have a clinical sign (something than can be easily measured by someone else, e.g. a rash) but no symptoms (something that cannot be easily measured by someone else, e.g. feeling unwell or a headache) or vice versa. This was to reflect the issue around the difficulty of diagnosing or ruling out Lyme disease using clinical signs only. However, we now propose to present the guideline committee with the stakeholder feedback on the issue of clinical scenarios and presentations to allow them to determine the best approach for the guideline to take. As such, we have removed the detail linked to the definitions of different clinical scenarios and presentations.
Lyme Disease Action	3	79	The phrase “full course” is subjective. Currently many clinicians appear to believe that a 10	Thank you for your comment. The term ‘definitive’ has now been removed.
			day course is “full”. There is no “definitive” treatment (see James Lind Alliance
			uncertainties) for anything other than perhaps early Lyme borreliosis with erythema
			migrans and given trials in progress it is unlikely that this will change in the near future.
			Suggest rephrase to “early or late disease where an initial course of treatment has been
			completed but symptoms or signs have recurred.”
Lyme Disease Action	3	82	As above: there is no definitive treatment so suggest re-phrase to “…have not resolved despite an initial course of treatment.”	Thank you for your comment. The term ‘definitive’ has been removed.
Lyme Disease Action	3	83	Insert  What tests for other tick-borne infections should be considered. See comments on lines 38 and 50.  What factors to consider if the pre-test probability is raised and the test results are negative or equivocal. Given the limitations of current tests, it may not be possible to make a definite diagnosis of Lyme disease, so it would be useful to give guidance on ‘probable’ and ‘possible’ Lyme disease.	Thank you for your comment. The remit of this guideline is Lyme disease and therefore other tick-borne infections will not be covered. Whilst we do not feel that any change to the wording of the scope is required, we will bring the detail of your second point to the committee’s attention as part of their consideration of evidence and classification of any management recommendations.
Lyme Disease Action	3	83	Is antibiotics intended to be an example of treatment or the only type of treatment to be considered? Consideration should be given to management for arthritis, neurological pain, facial palsy and endocrine, auto-immune, cardiac and ophthalmic sequelae. Some of this might depend on whether this guideline is concerned with Lyme Borreliosis (ie active infection) or with Lyme disease in its potentially wider context.	Thank you for your comment. The remit of this guideline is the diagnosis and management of Lyme disease. Antibiotic treatment is the only established treatment for Lyme disease. We acknowledge that where complications of Lyme disease occur referral for specialist NHS opinion may be desirable if the evidence supports this. The Guideline Committee will consider clinical scenarios where there is a need for specialist referral for management of complications. This guideline will not however, consider in detail the management of these complications.
Lyme Disease Action	3	84	See answers to the directly posed question 3 re clinical presentations.	Thank you for your response and detailed comments on our questions. We will bring the detail of your response to the Guideline Committee's attention. The information will be used to inform the Committee's decision making as they develop the review protocols that guide the searches for and review of the evidence for the questions outlined in the guideline scope.
Lyme Disease Action	4	104	Insert an additional outcome “Continuation of symptoms or signs”. It may seem a question of semantics, but evidence showing a reduction of clinical symptoms may be viewed as evidence that a treatment is “successful” whereas evidence showing a continuation of symptoms should be viewed as indicating a potentially unsuccessful intervention.	Thank you for your comment. For the purpose of the scope, we believe this is covered under the outcomes ‘reduction of symptoms’ and ‘cure’. The guideline committee will agree the key outcomes for each review and will use their expertise to determine whether the results of relevant studies are significant.
Lyme Disease Action	4	90	replace the phrase “a full course of definitive treatment” with “initial treatment	Thank you for your comment. The term ‘definitive’ has now been removed.
Lyme Disease Action	4	93	replace the phrase “a full course of definitive treatment” with “initial treatment”	Thank you for your comment. The term ‘definitive’ has now been removed. No further edits have been made.
Lyme Disease Action	4	96	The information needs of other healthcare providers requires consideration. A significant barrier to diagnosis and to effective, safe care is currently the lack of experience amongst UK clinicians. Lyme borreliosis can cause many complications and a patient may be seen by a rheumatologist, endocrinologist, neurologist, gynaecologist, physiotherapist, psychiatrist, psychologist, cardiologist and immunologist. These clinicians may not recognise the possibility of Lyme disease and have no quality, experienced resource to consult. The information and education needs of infectious diseases consultants also needs consideration. Lyme Disease Action has received many comments indicating that some do not believe Lyme borreliosis can be contracted “in their area”, that negative serology means that Lyme borreliosis cannot be present and that Lyme borreliosis cannot relapse. This despite Public Health England’s referral pathway for GPs which counters each of those statements. Whatever other recommendations are made during the course of this guideline development, the context section of the NICE guideline must attempt to address these issues in case this is the only resource that any clinician refers to.	Thank you for your comment. The information, education and support needs of healthcare professionals may be considered by the guideline committee as part of its reviews of evidence in the scope areas and acknowledged when linking evidence to recommendations. It is also anticipated that the publication of the guideline will provide helpful information for healthcare professionals and this may then be subsequently taken forward by appropriate providers as a resource for professionals. The NICE guideline context section will be drafted in light of the recommendations made in due course.
Lyme Disease Action	4	97	A key issue with the potential to improve outcomes is the provision of a network of regional centres of expertise. These require access to specialist diagnostic facilities a multi- disciplinary approach with a variety of healthcare professionals (nurses, physiotherapists occupational therapy etc) to meet the potential complex needs of patients with Lyme disease. This was supported by the Minister, Lord Prior, in a debate in the House of Lords in October 2015.	Thank you for your comment. The point you have raised concerns service delivery, which is unfortunately outside the remit of this clinical guideline.
Lyme Disease Action	4	97	A key issue to improve knowledge and outcomes and reduce ineffective care would be research to include follow up of patients after treatment. Consideration should therefore be given to follow up as a specific key issue, rather than just including it under treatment when symptoms or signs have not resolved. This could include consideration of diverse points such as removal of temporary pacemakers, and consideration of treatment for incompletely resolved facial palsy, in addition to consideration of further antibiotic treatment in case of relapse.	Thank you for your comment. Follow up of patients after treatment is an important part of the management of a condition and this has been identified as a specific outcome. We acknowledge a specific key issue around the management of Lyme disease when symptoms or signs have not resolved. We will bring the detail of your comment to the committee for their consideration when developing protocols. The committee is able to make research recommendations where evidence is lacking or inconclusive.
Lyme Disease Action	5	111	NICE guidance on treatment of neuropathic pain CG173 is relevant.	Thank you for your comment. This section only details NICE guidance whose recommendations support overarching principles of patient management rather than recommendations for specific symptom management. . As such CG173 is not included here in line with the NICE template.
Lyme Disease Action	6	130	If this context statement is to be used in the final guideline, it is imperative that it is clear and correct. This may be the only resource consulted by a busy clinician.	Thank you for your comment. The purpose of the context section in the scope is to set the scene in terms of epidemiology, nature of the condition and current practice. It is not intended to be included as part of the narrative of the published guideline. The scope is usually included as an appendix to the full published guideline.
Lyme Disease Action	6	132	It is not just B burgdorferi. Not enough is known about B miyamotoi infections, but this, and infections caused by other as yet unidentified genospecies, should not be excluded. See comment on Q4.	Thank you for your comment. The context section of the scope is intended to give a short overview of what is currently known. As such, it cannot outline all areas that are potentially being researched. Lyme disease itself is currently only linked to Borrelia burgdorferi-group. The management of co-infections is outside the scope of the guideline.
Lyme Disease Action	6	134	Where is the evidence (evidence, not personal opinion quoted in a paper) that Lyme disease can be asymptomatic? This trivialises the disease and has no place in a guideline dealing with symptomatic infection.	Thank you for your comment. We have amended the text in the scope to distinguish between asymptomatic infection and Lyme disease as a symptomatic infection.
Lyme Disease Action	6	135	There is evidence of longer incubation periods tan one month (eg Logar et al 2004).	Thank you for your comment. It is widely accepted that the incubation period ranges from a few days to about a month. However, the course of a disease is different for each individual and some people might experience a much longer incubation period. People who experience the onset of symptoms after more than one month from the time of infection will be included in the relevant reviews.
Lyme Disease Action	7	137	erythema migrans may not be centred on the bite and there may be multiple erythema migrans. People have been refused initial treatment because the rash was elsewhere and therefore “could not” be erythema migrans.	Thank you for your comment. We have changed the wording in the scope to read: “...in some people this is followed by a circular, target-like rash centred on the bite, known as erythema migrans…” to reflect the uncertainty about the proportion of people affected in this way.
Lyme Disease Action	7	141	Where is the evidence that Lyme disease is frequently selflimiting? It can resolve without treatment, but frequently? A statement like this is unsafe and runs the risk of encouraging a clinician to delay treatment.	Thank you for your comment. We believe our current wording is sufficient to describe the disease trajectory.
Lyme Disease Action	7	142	Suggest replace “risk of later symptoms” with “risk of chronic infection”.	Thank you for your comment. We have chosen to maintain the wording linked to later symptoms as this does not rely on definition of chronic infection.
Lyme Disease Action	7	143	Remove the phrase “post infectious Lyme disease” as this implies infection has been eliminated and we do not currently have the means to know this, as there is no reliable biomarker for disease activity and no test of cure.	Thank you for your comment. We have deleted this phrase.
Lyme Disease Action	7	145	Add “frank arthritis” because this is what the pathology shows in late Lyme borreliosis.	Thank you for your comment. This