Thousands could have Lyme disease without knowing

[AndyPR]

A campaign to raise awareness of Lyme disease has found that thousands of people could be living with the condition, having been diagnosed with something else.

Lyme disease is spread to humans through infected ticks. The NHS say up to three thousand people are diagnosed with the condition every year.

It can be treated effectively if it’s detected early enough, otherwise those with the disease may develop severe and long lasting symptoms.

The Fight Lyme Now campaign surveyed Lyme disease sufferers across the UK, and found almost one in five of those who had a laboratory test, on the NHS, tested positive for the ‘infective agent’ of Lyme disease, after receiving a diagnosis of a different condition previously.

Some of the conditions they’d been diagnosed with were Chronic Fatigue Syndrome, psychiatric disorders, autoimmune diseases, IBS, ME, MS, and others, including Alzheimers.

http://www.itv.com/news/wales/2017-02-08/thousands-could-have-lyme-disease-without-knowing/

 

[duncan]

@AndyPR, you may wish to consider posting this also/instead on a ME/CFS subforum since it appears to potentially addresses ME/CFS patients who may have received their diagnoses incorrectly.

 

[AndyPR]

@AndyPR, you may wish to consider posting this also/instead on a ME/CFS subforum since it appears to potentially addresses ME/CFS patients who may have received their diagnoses incorrectly.

I'm not going to duplicate a post, that just causes havoc, and my opinion is that, as it primarily discusses Lyme, then the Lyme sub-forum is the best place for it. But if @Kina or any other mod disagrees then I'm more than happy for them to move it.

 

[Undisclosed]

It should stay in this forum.

 

[Daffodil]

if everyone was tested for lyme via LTT ELISPOT maybe most everyone would have it, like EBV. I tested positive and was a virgin when I got sick, had never lived in a lyme area, had rarely been anywhere really. my parents are from india and had also never been in a lyme area I think, and had never been sick with anything remotely related. if I had it, maybe most people would have it. maybe it usually does very little or nothing?

 

[charles shepherd]

MEA position/information on Lyme Disease testing and treatment here in the UK

Taken from the Differential Diagnosis of ME/CFS section of the MEA purple book:

Lyme disease

Doctors have been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place. Infected ticks are more common in woodland, heathland and moorland in areas, such as Exmoor, the Lake District, New Forest, Yorkshire moors and the Scottish Highlands.

The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans) that spreads out from the bite, usually after about 5-15 days. Other early symptoms can include lymphadenopathy and a flu-like illness. Laboratory evidence should always be sought if the diagnosis seems possible. When the disease is diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neurological complications.

Analysis of cerebrospinal fluid from cases of neurologic post treatment Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Schutzer et al 2011).

Misdiagnosis of Lyme disease

There are well-documented concerns about over-diagnosis and inappropriate management of Lyme disease. A retrospective case note study of 115 adults with suspected Lyme disease, who were referred to a UK infectious diseases clinic, found that only a minority had Lyme disease, one third had ME/CFS and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.

Lyme disease diagnostic services

The autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme disease and about consequent dangers of misdiagnosis. The full statement can be found on the MEA website: http://www.meassociation.org.uk/2009/10/lyme-disease-and-mecfs/

As of 1 June 2012, the Lyme diagnostic service of Public Health England (formerly the Health Protection Agency) is provided by the Rare and Imported Pathogens Laboratory (RIPL), Public Health England, Porton Down.

Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitivity on cerebrospinal fluid, and antibody detection is the preferred first line test on cerebrospinal fluid. PCR is not usually performed on blood as the duration of bacteraemia is short.

RIPL also has the capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.

RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to ripl@phe.gov.uk. There is no clinic at Public Health England, Porton Down, and they are unable to see patients or to give telephone advice directly to members of the public. Their website provides more information for health professionals and a (P2) form that can be downloaded to request a Lyme disease test. RIPL website: www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl

The ME Association has a patient information leaflet on Lyme disease that is written by consultant microbiologist Dr Darrel Ho-Yen.

The American Centers for Disease Control and Prevention website has a list of frequently asked questions relating to Lyme disease: http://www.cdc.gov/lyme/faq/

Additional information:

1 New NHS initiative on Lyme disease: http://www.theguardian.com/society/...yme-disease-in-britain-spurs-ministers-to-act

2 It is worth noting that there are concerns about the reliability of some of the Lyme disease tests that are available in the commercial/private sector here in the UK as well as abroad.

So we have a situation where some people with genuine Lyme diseae may not be diagnosed by conventional NHS tests and then treated

And at the same time there are people being diagnosed as having Lyme disease with unvalidated commercial tests who are being treated with prolonged courses of antibiotics when they do not actually have Lyme Disease.

Worth watching this news video on 'false positive' Lyme Disease testing, and the overlap between Lyme Disease symptoms and ME/CFS, if you are thinking of spending a lot of money on controversial tests and treatments in the private medical sector.

Video: http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

Erythema migrans photo: https://www.cdc.gov/lyme/images/rashes/cdc_em.jpg

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[duncan]

From the article: "...survey found that 16% of people initially diagnosed with CFS eventually tested positive for Lyme disease...If this percentage is applied to the population of individuals in the UK who have been given a diagnosis of CFS, then it is possible that 35,000 of these individuals could be infected with the organism that is responsible for Lyme disease."

 

[barbc56]

From the article: "...survey found that 16% of people initially diagnosed with CFS eventually tested positive for Lyme disease...If this percentage is applied to the population of individuals in the UK who have been given a diagnosis of CFS, then it is possible that 35,000 of these individuals could be infected with the organism that is responsible for Lyme disease."

Pardon my fog, but which article had this info? The word "survey" piqued my interest.

Thanks.

 

[Marky90]

Well it means nothing if it`s referring to the arminlabs-tests..

 

[duncan]

Pardon my fog, but which article had this info? The word "survey" piqued my interest.

Thanks.

The article @AndyPR provided the link to in the opening post of this thread.

 

[duncan]

Well it means nothing if it`s referring to the arminlabs-tests..

I believe it referred to the NHS's own version of the 2T, i.e., the C6 peptide followed by a western blot.

 

[Hip]

From the article:

But the Fight Lyme Now survey found that 16 per cent of people initially diagnosed with CFS eventually tested positive for Lyme disease.

It is possible that thousands of people given a diagnosis of chronic fatigue syndrome could instead have Lyme disease.

If we assume that Borrelia can cause or trigger ME/CFS, then the initial ME/CFS diagnosis in these patients may not necessarily be incorrect. The ME/CFS diagnosis may be correct, and then only later is it found that the patient has evidence of a Borrelia infection, either a past or ongoing infection, which may have caused or triggered the ME/CFS.

This would be no different to other infection-triggered ME/CFS cases, in which the ME/CFS diagnosis often comes first, and then blood testing for various possible triggering pathogens comes later.



It would also be interesting to see the reverse survey: how many patients given a Lyme diagnosis might in fact have chronic active enterovirus infections when given the appropriately sensitive neutralization test, suggesting that they may instead have virally triggered ME/CFS?

Given the possibility of a certain percentage false positives on some of these non-standard Borrelia tests, there may be ME/CFS patients whose tests incorrectly indicated they had Borrelia, whereas in fact their ME/CFS might have been virally triggered.

 

[duncan]

If we assume that Borrelia can cause or trigger ME/CFS, then the initial ME/CFS diagnosis in these patients may not necessarily be incorrect. The ME/CFS diagnosis may be correct, and then only later is it found that the patient has evidence of a Borrelia infection, either a past or ongoing infection, which may have caused or triggered the ME/CFS.

This would be no different to other infection-triggered ME/CFS cases, in which the ME/CFS diagnosis often comes first, and then blood testing for various possible triggering pathogens comes later.

Nods.

Given the possibility of a certain percentage false positives on some of these non-standard Borrelia tests, there may be ME/CFS patients whose tests incorrectly indicated they had Borrelia, whereas in fact their ME/CFS might have been virally triggered.

True. I'm not sure how that would fit into these circumstances, though, since false positives with the C6 coupled with the western blot aren't all that common - but they do happen.

 

[Hip]

I'd like to see someone perform a study on treating a group of chronic Lyme disease patients displaying ME/CFS symptoms with rituximab; if these patients had the same clinical response as regular ME/CFS patients get from rituximab, it would suggest that Lyme ME/CFS is the same as or very similar to regular ME/CFS.

 

[barbc56]

I'm still trying to find the survey. Was it patients, doctors, self report diagnosed, LLMDs, IDSA? It would help to know yhese factors before speculating. Did I also miss this?

 

[AndyPR]

I'm still trying to find the survey. Was it patients, doctors, self report diagnosed, LLMDs, IDSA? It would help to know yhese factors before speculating. Did I also miss this?

I also had a quick look before posting this here and couldn't find any access to the results of the survey, or even a clear indication which survey it is.

It may well be the same survey as discussed here http://forums.phoenixrising.me/inde...yme-now-campaign-uk-please-take-survey.42094/

 

[justy]

I have a diagnosis of M.E caused by long term, late stage, untreated neurological Lyme disease. At this stage - over 20 years in, possibly more, my case has become so complex that I cant have any treatment and just get sicker, presumably until I die. I have also managed to pass this onto at least one of my children, who has also been sick and has a positive Lyme test.

When are governments and health systems going to stop letting people down and actually do something abouyt the situation with testing, diagnosis and treatment for Lyme.

I'm sick of people saying 'chronic lyme doesn't exist - its PTLD', when this cant be the case for many many thousands of us who have never had ANY treatment for the Lyme or co infections, and are not taken seriously by our Drs.

My daughter saw a specialist in London when she was pregnant, as ked for a course of antibitoics during pregnancy to protect her unborn child, showed them her history and positive Lyme test and was basically disbelieved. They refused to offer her any antibiotics and when she asked to be seen by a specialist Obstetrician in the UK who has written about Lyme disease in pregnancy and even done talks on it, the said obstetrician said she had no knowledge of Lyme disease and also refused to see my daughter, even going so far as to claim she had never spoken on it (the slides from the talk are on the internet for all to see).

The baby appears healthy now - but then so did my daughter at that age. Must we have generations of people suffer in this way?

 

[duncan]

I also have a diagnosis of Lyme and ME/CFS - except my ME/CFS expert thinks I got ME/CFS from a virus - I have all the usual high titers for enteroviruses and HHVs etc. Except he thinks my ME/CFS caused my Lyme to become more entrenched and treatment resistent.

I tend to disagree. I think Bb and company cause my ME/CFS. Chicken and egg, though, so who is to say?

 

[Valentijn]

Chicken and egg, though, so who is to say?

Eat 'em both, that's what I say

 

[Daffodil]

Well it means nothing if it`s referring to the arminlabs-tests..

what is wrong with the armin lab test?