/ Lyme Disease petition

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Janey Cringean - on 01 Jun 2017
Worried about ticks and Lyme Disease? Have you signed this petition for better testing, treatment and public awareness? It's been submitted to the Scottish Parliament but you don't have to be Scottish to sign it.
http ://www.parliament.scot/GettingInvolved/Petitions/lymedisease

Scottish patients are calling on the Scottish Parliament to urge the Scottish Government to improve testing and treatment for Lyme Disease and associated tick-borne diseases by ensuring that medical professionals in Scotland are fully equipped to deal with the complexity of tick-borne infections, addressing the lack of reliability of tests, the full variety of species in Scotland, the presence of 'persister' bacteria which are difficult to eradicate, and the complexities caused by the presence of possibly multiple co-infections, and to complement this with a public awareness campaign.

Please help us publicise it so that as many people affected by Lyme or regularly getting bitten by ticks gets a chance to sign it. Thank you.
subtle on 01 Jun 2017
In reply to Janey Cringean:

Very good - is there also a petition for better testing for Weil's disease?
Skyfall - on 02 Jun 2017
In reply to subtle:

Go start one ? If there isn't, that's not the fault of the OP.
MFB - on 02 Jun 2017
Janey Cringean - on 02 Jun 2017
In reply to subtle:

I would love to help those with Weil's disease too - my grandfather died of it. But the Lyme Disease is a much bigger problem. The largest Facebook group on leptospirosis/Weil's that I can find has 79 members: the Lyme Disease UK group has over 6,900 members, including many patients seeking answers. The numbers speak for themselves.
toad - on 02 Jun 2017
In reply to Janey Cringean:

Its probably more complex than that. Lots of social media noise about chronic lyme that probably doesnt reflect actual cases, but then there is a problem with misdiagnosis. And tick populations are increasing.

However i still dont think you can use social media as a simple proxy for prevalence
Doug on 02 Jun 2017
In reply to toad:

I've been taking an interest since my partner was diagnosed as potentially having chronic lyme disease and its less well known here in France than in the UK (although that is changing). There was an interesting programme on TV a couple of days ago which might be watchable from the UK
Janey Cringean - on 02 Jun 2017
In reply to toad:

A survey of Scottish blood donors concluded that 4.2% of blood donors are infected and that rose to 8.6% in the Scottish Highlands. Because those of us that are chronically ill with it don't give blood for fear of infecting others, the prevalence is likely to be higher. Even if you accept the 4.2% figure, that equates to over 200,000 Scots infected.
Nbrain - on 02 Jun 2017
In reply to Janey Cringean:
just because you have positive Lyme serology doesn't mean you have Lyme disease. Do you have a link to the scientific paper relating to your comments?
Post edited at 17:09
Janey Cringean - on 02 Jun 2017
In reply to Nbrain:

Agreed positive serology does not mean current symptoms - it took three years from my bite and initial rash to symptoms showing. Evidence in a letter which is not open access I'm afraid: http://onlinelibrary.wiley.com/doi/10.1111/tme.12197/abstract
Simon Caldwell - on 05 Jun 2017
In reply to Janey Cringean:

Some interesting findings from a small survey done at the 2014 LAMM, where anyone who found a tick on them during/after the event was invited to have it analysed...

simonridout - on 06 Jun 2017
In reply to Janey Cringean:

While laudable, this is wishful thinking. The nature of Lyme Disease is that it is difficult to diagnose and treat. This is not because of a lack of effort by doctors, microbiologists and allied professions. I am unsure how the Scottish Government can make a difference.
In reply to simonridout:

Very good post.
Janey Cringean - on 12 Jun 2017
In reply to Simon Caldwell:

This paper describes the 2014 LAMM findings in greater detail.
The worrying thing is that there were 7 nymphs with B. valaisiana and 1 nymph with B. miyamotoi. Neither off these species are included in the currents tests used at Raigmore, so anyone with such infection will not be diagnosed.
Janey Cringean - on 12 Jun 2017
In reply to simonridout:

Being difficult to treat does not make it impossible to manage. I was misdiagnosed for 3 years despite numerous GP visits for a clear bulls-eye rash, a symptom which is diagnostic for Lyme Disease. I was then treated for 3 years by Edinburgh Western General before they told me in 2010 that they could do no more for me and discharged me. I was still very ill and thought I was being sent home to die. My GP asked them to reconsider but they refused, quoting the guidelines of the Infectious Disease Society of America (IDSA) which state thst 2-4 weeks of antibiotics are all that is needed to eradicate the infection. I asked for a second opinion in Glasgow but my request was refused. Because 2 consultants refused to help, so did my GP. Being left without any NHS help at all, I found private help. They have treated me for 7 years and helped me gain significant improvement in my quality of life. I have gone from being unable to walk more than 100 yards, to being able to enjoy several mile walks again. Lyme Disease should not be misdiagnosed when there is a clear diagnostic symptom, and just because an illness is difficult to cure, does not give a mandate for abandoning patients. Continued use of the outdated IDSA guidelines is failing patients. I want everyone to experience the improved quality of life that I have been able to achieve through private treatment which recognises the persistence of infection after antibiotic treatment. The petition also asks for more to be done to raise public awareness so that tick bites can be avoided in the first place.
munro90 - on 12 Jun 2017
In reply to Janey Cringean:

> a clear bulls-eye rash, a symptom which is diagnostic for Lyme Disease

Except it's not. Bulls-eye rashes (aka Target Lesions) also occur in Erythema Multiforme, which has myriad causes. While the rash is characteristic of Lyme Disease (ie it usually occurs), it is not diagnostic in itself.
Janey Cringean - on 12 Jun 2017
In reply to munro90:

There is sufficient differentiation of rashes for erythema migrans to be diagnostic - usually more than 5cm across and with a central clearing.
"Erythema migrans is the only manifestation of Lyme disease in the United States that is sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation." - https://academic.oup.com/cid/article-lookup/doi/10.1086/508667
While B. burgdorferi has been implicated as the etiological agent for a number of clinical syndromes of LB, only EM cutaneous lesions are pathognomonic" - http://www.phac-aspc.gc.ca/publicat/ccdr-rmtc/08vol34/dr-rm3401a-eng.php
"Most patients with erythema migrans, the pathognomonic rash of Lyme disease, do not recall a deer tick bite." -
Pathognomonic (definition): A pathognomonic sign is a particular sign whose presence means that a particular disease is present beyond any doubt.
Janey Cringean - on 14 Jun 2017
For GPs, there is a course on recognising and treating Lyme Disease: http://elearning.rcgp.org.uk/course/info.php?id=164

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