Lyme Disease: MP says she has just been diagnosed (UK)

[charles shepherd]

News item from the Daily Telegraph

An MP who was bitten by a tick after a weekend away in Latvia was diagnosed with Lyme disease after a chance conversation with a constituent.

Michelle Donelan, 32, the Conservative MP for Chippenham, noticed a rash on her upper arm after she appeared as guest of honour at the Semington village fete in Wiltshire.

She thought nothing of the bite until a week later, when a man suffering from the tick-borne disease came into her weekly constituency surgery to discuss care options.

Full story here:

http://www.telegraph.co.uk/news/201...me-disease-after-chance-conversation-with-co/

 

[duncan]

So, where was she bitten by the tick? In Latvia or the UK?

The way this tale is told, UK experts may well ascribe the tick bite to an incident in Latvia.

 

[charles shepherd]

So, where was she bitten by the tick? In Latvia or the UK?

The way this tale is told, UK experts may well ascribe the tick bite to an incident in Latvia.

Yes, it's not really clear as The Telegraph says:

An MP who was bitten by a tick after a weekend away in Latvia was diagnosed with Lyme disease after a chance conversation with a constituent.

If she was bitten in Latvia it should have said ..bitten by a tick during a weekend away..

So I just don't know if this was a Latvian tick or a British tick!

CS

 

[duncan]

I suppose my question must seem irrelevant to some.

In a way, though, it touches on some of the fringe issues that characterize TBD polemics.

There reportedly has been some reluctance on UK medical authorities to embrace the alleged deficiencies in Borrelia diagnostics and, accordingly, the extent of Bb incidence in the UK.

Where the infection comes from matters if only for that reason (there are others, possibly, like implications stemming from strain and coinfections)

Why does it matter? It matters in a similar fashion to why, for instance, North Carolina clinicians - and patients - must wonder where they were bitten. Even if you test positive on BOTH the CDC's preferred tests in NC, a diagnosis of Lyme might well be challenged, because some Lyme experts claim there is no Lyme in NC. If you come to a Raleigh, NC with a tick in hand and a bull's-eye rash, and you have been anywhere else in the country that has ticks, you MAY get a Lyme diagnosis, but it likely will be qualified by a claim that the infection was not likely gotten in North Carolina. It is arguably more difficult to get and retain a Lyme diagnosis in that state, and perhaps, by extension, more challenging to get appropriate treatment without paying out of pocket.

So, geography seems to matter, maybe with some scientific justification, but many believe mostly for $'s and political reasons.

 

[justy]

I imagine that, being an MP she will get immediate and correct treatment. And yes @duncan - may GP's in the UK claim you can only catch it in one or two geographically small areas. I heard one the other day - a woman was told she couldn't have been bitten by a tick because they only live in sewers!! you cant make this stuff up.

 

[sarah darwins]

a woman was told she couldn't have been bitten by a tick because they only live in sewers!! you cant make this stuff up.

I've personally heard a consultant say that ticks only live in swamps.

 

[IreneF]

CDC map of confirmed cases of Lyme by county of residence, from 2014:
http://www.cdc.gov/lyme/resources/reportedcasesoflymedisease_2014.pdf

Note the lack of Lyme in Louisiana, which is full of swamps. Also note cases in NC.

 

[duncan]

There is actually a researcher - I think he is one of the authors of the new IDSA Guidelines due out this Fall - that has a paper suggesting Lyme cases diagnosed in North Carolina and confirmed via 2T be considered false positives since there is no Lyme in NC.

Cannot make this stuff up.

 

[sarah darwins]

There is actually a researcher - I think he is one of the authors of the new IDSA Guidelines due out this Fall - that has a paper suggesting Lyme cases diagnosed in North Carolina and confirmed via 2T be considered false positives since there is no Lyme in NC.

Cannot make this stuff up.

Guess no one showed him the CDC's latest map of black-legged tick distribution. Or maybe North Carolina ticks have promised not to go anywhere near other ticks, and deer in Virginia have pledged not to cross the border.

 

[justy]

Lyme cases diagnosed in North Carolina and confirmed via 2T be considered false positives since there is no Lyme in NC.

This is common practice in the UK - I have heard of MANY cases of people having tick bites, bulls eye rash, GP starts on antibiotics. Testing is sent to Porton Down. If the test is negative GP is advised to STOP treatment, if the test is positive GP is usually advised test is 'false positive' and STOP treatment.

 

[PennyIA]

Guess no one showed him the CDC's latest map of black-legged tick distribution. Or maybe North Carolina ticks have promised not to go anywhere near other ticks, and deer in Virginia have pledged not to cross the border.

I just love that they think that sampling the population (and not sampling them often)... is justification for denial of medical treatment. I, myself, have asked for Lyme testing (still undiagnosed, though I think I have ME/CFS)... just in case, to rule it out. I lived for YEARS and YEARS in a dense timber area and dealt with many tick bites as well as finding ticks repeatedly. But because I can't remember a bullseye rash, well... then it would be a waste of money to test for it (per the doctor who frustrates me to no end). Because OBVIOUSLY, ticks know that they have to bite us in areas we can see, not like in the scalp or back or anything.

 

[duncan]

Patients get squeezed from both sides.

On one side are stringent requirements to qualify for a positive diagnosis, justified by claims of virtual diagnostic infallibility of the 2T in the US, and the C6 in the UK. Dismissed in this process are concerns that strains are missed, well-documented immune trickery by Bb, persisters and their implications, co-infections and more.

On the other side are caveats for the few who actually earn their way into the Lyme fraternity - the unending parade of excuses for dismissing the rare positive as a false positive.

Geography can appear to many to be one of the latter.

@PennyIA , I would suggest your doctor bone up on Lyme studies. Or, perhaps, he actually knows a lot about the recriminating politics that pervade Lyme, and is acting accordingly. Either way, you are left on the outside looking in, wondering, and that should never be acceptable.

 

[Valentijn]

But because I can't remember a bullseye rash, well... then it would be a waste of money to test for it (per the doctor who frustrates me to no end). Because OBVIOUSLY, ticks know that they have to bite us in areas we can see, not like in the scalp or back or anything.

The rash only occurs in about half of people who test positive. Lack of a rash is not a reason to rule out Lyme.

There are also non-Lyme infections transmitted by ticks which might cause similar symptoms, and are not associated with a rash.

 

[charles shepherd]

For those who are not aware of what is being discussed here:

The characteristic 'bulls eye rash' in Lyme disease has a central red area,

which is surrounded by clear skin,

which is then surrounded by expanding red ring:

 

[parabola]

Let's hope she got treatment in time, and doesn't end up with chronic Lyme, needing DSA....

 

[PennyIA]

The rash only occurs in about half of people who test positive. Lack of a rash is not a reason to rule out Lyme.

There are also non-Lyme infections transmitted by ticks which might cause similar symptoms, and are not associated with a rash.

I had already heard that... my doctor is the typical Lyme skeptic indicating that the basic tests ARE accurate and that Lyme experts are just trying to line their pockets... following the hard line of Lyme isn't as broad as some folks think...

:-(

That's why I thought it would be good to get tested just in case...

 

[Snowdrop]

Guess no one showed him the CDC's latest map of black-legged tick distribution. Or maybe North Carolina ticks have promised not to go anywhere near other ticks, and deer in Virginia have pledged not to cross the border.

It's sad that people who need a diagnosis and treatment can't get it. On the flip side it's somewhat hilarious that these medical science types expect an email or something from the ticks telling them they've expanded there habitat area.

Most creatures habitats change over time--but the official line is ticks stay within CDC boundaries. How can anyone actually believe this?

 

[sarah darwins]

Most creatures habitats change over time--but the official line is ticks stay within CDC boundaries. How can anyone actually believe this?

It's very strange, especially when biologists / zoologists etc are rigorously documenting spectacular rates of animal population shifts and declines, habitat loss and alteration. The combination of climate change and habitat loss, and the consequent devastation of small bird populations in many areas is having profound and rapid effects on tick populations, birds being the main natural check on their numbers. It's not any kind of a secret, and certainly not the theorising of crackpots. It's well documented and inescapable.

I've been predicting for a while that at some point the IDSA's lyme mafia are going to use the term 'epidemic', but not until they've got the lucrative vaccine on which some of them have component patents bodged up to a plausible level of efficacy. Then we'll have an epidemic.

 

[duncan]

@sarah darwins , the part I am having trouble understanding is why chronicity creates a hurdle for the vaccine effort. Weintraub alluded to it, I think, and Carl Tuttle's petitions refer to it.

I just cannot get my head around how refractory Lyme prevents or makes more difficult the acceptance of a vaccine by the FDA.

I think it has something to do with the validation of the vaccine's efficacy - it would/will be hard to validate without a restrictive and narrow definition of Lyme. Chronic Lyme runs counter to this. But I'm not clear on the why's. Even reading Weintraub and Tuttle, my brain won't cooperate.

Sorry @charles shepherd, for the digression. I hope this isn't too off topic. This is how Lyme discussions go sometimes - there is a political nexus ( read that "money trail") that seems as undeniable as gravity.

 

[worldbackwards]

This woman is on BBC 5Live NOW!
Edit: mentions severe impact of non-treatment, but doesn't really go into Chronic Lyme.