Lyme disease being treated with bee stings (Inverness, UK)

[charles shepherd]

Lyme disease being treated with bee stings

Health warning! - this story comes from the health section of the Daily Mail:

Lyme disease sufferer, 36, gets her husband to sting her 30 times a week with BEES as she believes the venom brings her symptoms under control >>

http://www.dailymail.co.uk/health/article-4480446/Lyme-disease-sufferer-gets-husband-sting-bees.html

MEA position/information on Lyme Disease in the UK

Taken from the Differential Diagnosis of ME/CFS section of the 2017 MEA purple book:

Lyme disease

Doctors have been warned by their 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 on the NHS 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

It is also 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.

Also 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 rash:

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[helperofearth123]

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).

Where can I have this test done? (UK). I was diagnosed with post-treatment lyme disease syndrome and later CFS.

 

[Snow Leopard]

WTF is wrong with the people running the Daily Mail that they choose to publish this?

 

[Marco]

WTF is wrong with the people running the Daily Mail that they choose to publish this?

Why not blame the BBC while you're at it. They ran the original story that inspired her 'therapy'

http://www.bbc.com/future/story/20150327-how-a-bee-sting-saved-my-life

 

[Snow Leopard]

Why not blame the BBC while you're at it. They ran the original story that inspired her 'therapy'

http://www.bbc.com/future/story/20150327-how-a-bee-sting-saved-my-life

*shakes fist*

 

[charles shepherd]

Where can I have this test done? (UK). I was diagnosed with post-treatment lyme disease syndrome and later CFS.

Unless you are part of a research study, it is highly unlikely that a UK based physician would want to carry out a lumbar puncture (in order to obtain cerebrospinal fluid) in relation to the clincal assessment, diagnosis or management of Lyme Disease

CS

 

[charles shepherd]

As someone has just said on our MEA Facebook discussion on this news item: "RIP 30 bees"

 

[helperofearth123]

Unless you are part of a research study, it is highly unlikely that a UK based physician would want to carry out a lumbar puncture (in order to obtain cerebrospinal fluid) in relation to the clincal assessment, diagnosis or management of Lyme Disease

CS

I actually had a lumbar puncture at Addenbrooks hospital a few years ago (while ill with CFS). I felt quite a lot better for a few days afterwards which led the doctor to assume I had some kind of brain swelling.

Is there a chance they could still have my sample stored somewhere? Maybe I should write them a letter asking them to perform this test.

 

[charles shepherd]

I actually had a lumbar puncture at Addenbrooks hospital a few years ago (while ill with CFS). I felt quite a lot better for a few days afterwards which led the doctor to assume I had some kind of brain swelling.

Is there a chance they could still have my sample stored somewhere? Maybe I should write them a letter asking them to perform this test.

Were you involved with the research study that was carried out by Higgins, Pickard and Lever at Addenbrooke's Hospital into the link between ME/CFS and idiopathic intracranial hypertension:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/

If so, the samples may have been archived

Even if they have, I don't know if they would be willing to co-operate here. But you could always ask…….

CS

 

[helperofearth123]

Were you involved with the research study that was carried out by Higgins, Pickard and Lever at Addenbrooke's Hospital into the link between ME/CFS and idiopathic intracranial hypertension:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/

If so, the samples may have been archived

Even if they have, I don't know if they would be willing to co-operate here. But you could always ask…….

CS

Thanks for the reply. I wasn't in the actual study but it was those doctors who did it. I might try asking them just in case, although it still wouldn't lead to any treatment so I'm not sure what the purpose would be.

 

[cigana]

I actually had a lumbar puncture at Addenbrooks hospital a few years ago (while ill with CFS). I felt quite a lot better for a few days afterwards which led the doctor to assume I had some kind of brain swelling.

Is there a chance they could still have my sample stored somewhere? Maybe I should write them a letter asking them to perform this test.

The Schutzer study was brilliant, but If I were you I would save that fluid until something more useful for diagnosis comes up.

 

[justy]

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 Big Tick Project found there is nowhere in the UK that is not at risk from Ticks and Tick borne diseases, you can view it here - there is only one area of the UK listed as low risk

http://www.bigtickproject.co.uk/ticks-in-the-uk/uk-tick-threat-map/

The map is based on actual study where they collected and identified and tested actual ticks.

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.

Less that 30% of people with Lyme disease display or notice an EM rash.

Laboratory evidence should always be sought if the diagnosis seems possible.

By Public Health England's own guidelines to GP's the presence of an EM rash is diagnostic in itself and treatment can be given on this basis alone. No one should be waiting for unreliable tests in these cases - but they still do!

Lyme disease is usually diagnosed on the NHS by serology.

I don't even want to start in on the whole unreliability of testing used by the NHS/CDC. But just wanted to flag it up.

It is also 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.

There are also serious concerns about the reliability of the tests used by the NHS. Not only can the tests be inaccurate, showing many false negatives, but also Porton Down has, on many occasions withheld test results from patients, and reported positive samples as 'false positives' - even on people with known tick exposure and EM rash. This is not uncommon, Many consultants across the UK are also telling people their positive Lyme test is a 'false positive' - even when the patient presents with all the symptoms. They are often then told they have 'CFS' or depression, or even worse, conflate the two.

WTF is wrong with the people running the Daily Mail that they choose to publish this?

BVT has shown to have some beneficial affects for patients with Lyme - I only know this anecdotallyl from Lyme forums etc. Its not one for me, but I do think it is helping some, so its not quite as crazy as it sounds. They tell me the bees are at the end of their life cycle anyway? im not convinced by this and my MCAS precludes any messing about with bees.

 

[justy]

Where can I have this test done? (UK). I was diagnosed with post-treatment lyme disease syndrome and later CFS.

I know we have had this conversation before, but just to say that my opinion ,that I share with many others is that if you have had lyme, proven on testing, had treatment and never recovered fully then you were not adequately treated and could still, with correct treatment improve.

The Lyme Disease UK Facebook group is literally groaning under the weight of people with Lyme who were either misdiagnosed or undertreated who are now getting better with further, correct treatment - even those who have been ill for many years.