I want to be tested for lyme (UK)

[harveythecat]

Hello,

I had a small itch on the back of my hand today and it reminded me that not long (though I'm not sure how long, maybe a few weeks?) after I first got ill, with ME , I had a round rash on the back of my right hand for a while ( I can't remember how long.) When I look at lyme rashes online, it did look like the inner ring of the classic bullseye rash.

I remember mentioning it as an afterthought (it seemed like nothing compared to my other symptoms) to my GP and she thought it might be ringworm, though antifungal cream didn't clear it up.

That was about three years ago. I am as sure as can be that my symptoms match ME, but should I try and be tested for lyme? Or is it too late anyway? I feel it's quite likely that the rash was unrelated but it seems too much like the typical lyme rash to ignore. Is this something that the NHS would do?

I got ill in the centre of Oxford, which doesn't seem a likely place for ticks but was at home in the countryside four weeks prior to this (moorland in Yorkshire).

Many thanks for any advice and all the best to you all xxx

 

[Skippa]

The NHS does test for borrelia antibodies, but convincing your doctor to order the test is another matter entirely.

I walked around COVERED FROM HEAD TO FOOT with erythema migrans for TWO MONTHS before another doctor saw me by chance and ordered the tests. They came back positive.

I have heard that even if they come back negative, they can be unreliable and it doesn't mean you don't have it.

And even then, you only get 3 weeks of doxycycline which may or may not clear up any acute lyme outbreaks you have, but there is still a chance a cyst form can hide and escape to fight another day...

 

[JES]

I didn't have any trouble obtaining Lyme tests from the few private doctors I went to, complaining about neuro symptoms and mentioning I had a tick once was enough to get the tests done. The other matter is that the standard ELISA test is almost as useless as throwing a dice. The only scenario in which I can see that test useful would be if you have really high IgM+IgG titers, that would be pretty conclusive evidence. And as above post mentioned, typically all you will get even with ELISA test positive would be 2 or 3 weeks of doxy.

 

[brenda]

Having the bullseye rash means it is almost certain that you have it. You will not get adequate treatment from the NHS at this stage, in all probability it would only be successful if you caught it straight away and even then, there is no way of proving that it has been cured as all sorts of things skew the blood tests.

It is safest to assume you have it and start treatment. There are various methods of killing borrelia but it is best to start to clean up your diet, and generally improve the terrain before killing starts when you are past the early stage so that your immune system has more chance when you start killing.

You often have leaky gut with Lyme so starting there is a good idea.

When you get your body improved you can use herbs with or without antibx or use other methods like rife.

 

[Skippa]

Having the bullseye rash means it is almost certain that you have it. You will not get adequate treatment from the NHS at this stage, in all probability it would only be successful if you caught it straight away and even then, there is no way of proving that it has been cured as all sorts of things skew the blood tests.

It is safest to assume you have it and start treatment. There are various methods of killing borrelia but it is best to start to clean up your diet, and generally improve the terrain before killing starts when you are past the early stage so that your immune system has more chance when you start killing.

You often have leaky gut with Lyme so starting there is a good idea.

When you get your body improved you can use herbs with or without antibx or use other methods like rife.

Hi, have you got a comprehensive list or trusted link whereby we can find out all of the treatments you allude to please?

 

[Skippa]

It occurs to me that some lyme patients (myself included here) can have periodic acute outbreaks of erythema migrans (bullseye rash). By this time it is "disseminated".

I believe it is at this point (during an outbreak) that classic plasma swimming (hehe technical term) borrelia is at its most active and therefore gives the best chance of a positive result.

 

[justy]

Even a positive test on the NHS can be shrugged off as a false positive - there are literally thousands of UK people in this situation. A private test from say Arminlabs wont be accepted by the NHS. If you think you had a bulls eye rash, and may have been bitten by a tick - lots in Yorkshire btw and lots in city centres - then you likely have lyme and co infections and could make a complete recovery with the right help. you wont get that help under the NHS.

You could go private. But not much help in the UK, other than Breakspear. many try herbs, diet and self treat. There are Drs in Europe that may help - Germany., Finland, Belgium to name a few.

I suggest if you are on FB that you look up lyme disease UK discussion group - thousands of very knowledgeable members - all let down massively by the NHS.

 

[charles shepherd]

MEA position/information on Lyme Disease 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 rash: http://www1.toronto.ca/City Of Toro...yme Disease/Files/Images/erythema_migrans.jpg

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[duncan]

You may wish to double check, but one of your tests was probably the C6. The C6 arguably has some problems, but it also has some reputed assets, one of which reportedly is - upon successful treatment - to decline by at least fourfold, or return to normal levels in early and early disseminated stages. When the test was first being marketed back in the late '90's, its advocates couldn't speak loudly enough its praises - including about late stage. The late stage hub-bub changed, and I have always wondered why, but the accepted wisdom I think is that, even though a positive C6 can be a highly reliable confirmation of late stage, it cannot always map the infection's decline as the test is purported to in earlier stages (my personal suspicions are that that is because the disease is harder to eradicate in late stage, and the C6 actually works just fine when it can sniff out the strain - it simply isn't showing them that their treatment protocol is working, but I could be wrong, and certainly that is not what organizations like the NIH say).

One important asterisk here: The C6 I know and love so dear is based around a B31 strain of a specific species of Bb, You will have been tested for three species, if I'm not mistaken, so I am not clear how the C6 has been modified, or if it has, to do that.

Also, if someone does have Lyme, sometimes co-infections are an issue, so when tested, ask to be tested for these. In the US they are a real threat - not sure about the UK.

 

[brenda]

Hi, have you got a comprehensive list or trusted link whereby we can find out all of the treatments you allude to please?

This is the most popular herbal treatment:

http://buhnerhealinglyme.com/

For other treatments see:

http://lymeinfo.net/alt.html

and look on the Lyme forums.

 

[brenda]

https://draxe.com/natural-strategies-to-cure-lyme-disease/