CaudwellLyme charity have made a blog post following a survey on UK state health care experienced by Lyme and other tick-borne disease patients.

Even if you’re healthy it’s still worth a look at the graphs and to see that the NHS diagnostic tests are unreliable.

https://caudwelllyme.com/2016/08/30/problems-with-current-uk-care-for-tick-sick-patients/

Edit: would also add that not a single NHS doctor has mentioned Lyme disease despite my stating that I’ve enjoyed outdoor sports for 25 years and providing evidence of this.

It’s patchy I guess. My GP tested me for it, amongst lots of other things, during an unexplained period of poor health a few years ago. It turned out to be something else but the first test was positive for lymes. The second wasn’t…

I was lucky that he had similar interests to me so it occurred to him to test for it.

Is that a truly independent and unbiased survey?

crikey – the charity have clearly not commissioned a regulated opinion poll organisation to carry it out. As for unbiased, well I completed it so does that make it biased or unbiased? It’s the bigger picture here though.

ianfitz – some interesting results there, have they been followed up since?

What do the serology tests involve? If Lyme disease can be unequivocally diagnosed via this route then that sounds significant.

Seems like a tough one for GPs, as they cannot be dishing out antibiotics to treat vague malaise-like symptoms. Lyme is a very serious issue, obv, but it is insignificant compared to that of antibiotic resistance.

Garry_Lager – have a read of this:

EU gives Innatoss €2 million funding to develop a new Lyme diagnostic test

My GP reckons Lyme’s disease is the new ME.

@teacake yes thats exactly the problem, Doctors don’t have a reliable test for example so they have their fingers in their ears – la la la can’t hear you. ME or as the French call it a “burn out” is pretty real as far as the patient is concerned.

Note cases of Lyme now confirmed on outskirts of Arundel having previously been restricted to Whiteways Woods (popular mtb trails) amingst aother Sussex locations

From facebook

***HEADS UP – IMPORTANT WARNING***

We have just received the following warning from one of our members who asked if we would post it on here:

“Lyme Disease in the Arundel area.

I unfortunately contracted it. Bitten by infected ticks here in the Arundel area. It’s not pleasant and I hope by making people aware of Lymes disease and their connection with ticks other people will not have to suffer as I have.”

PLEASE click LIKE to this post to spread the word and share on your own page.

***’AS’ SAYS:
In previous years the woodland around Arundel was a risk area but not as high risk as woodland further towards Fontwell and the Whiteways area.

Looks like it has moved up to our town boundaries and people need to be aware of this especially if you regularly walk dogs in the area as they can carry the ticks back into your home.

Check it out:

http://www.patient.co.uk/health/lyme-disease-leaflet

The photo shows the distinctive circular rash that appears between 3-30 days after contracting the disease. If you suspect you may have this following a tick bite we suggest you contact your GP immediately.

The following is a site which explains how to safely remove ticks:
http://www.lymediseaseaction.org.uk/about-ticks/tick-removal/

Enjoy the beautiful woodland around the town and – BE SAFE!

AS

My GP reckons Lyme’s disease is the new ME.

Sounds like a proper knob.
He should meet my uncle and the 3 other people that I know with it, they would soon tell him all about their shitty diagnosis through local GPs ,about how long it took them to get any treatment that worked. The long term issues caused by bad and missed diagnosis are frightening .
With more and more people doing outdoor activities it’s only going to get worse.

From Facebook today…

Tick fell off a dog & put in the bag, where it lived for 6 wks. It laid eggs and the eggs hatched. This is why you should use flea &tick products on your pets, don’t want that in your house!

Lost a tick off my parent’s dog yesterday. I’m going to have nightmares about that photo.

Managed to pick one up yesterday riding round dalby, only noticed when I got back home in the shower.

Is it true you can only get lyme’s if the tick has been attached for more than 24 hours?

Nope. I got bitten back in march, noticed it the same night. 3days later symptoms started, they became pretty damn debilitating. I genuinely couldnt muster the strength/grip to open a pack of hot cross buns (which is clearly a medical emergency!)

Fortunately my GP was a locum and focused on being practical and proactive with treatment. Unfortunately the follow up was with a different gp, who offered the opinion that a negative serum result was conclusive and it couldnt have been lymes. This was despite all the evidence pointing to how inaccurate the test is, especially in the early days. Its fair to say I will not be bothering that GP with anything more complex than a pimple from now on.

There does seem to be a big debate raging around “chronic lymes”, which is muddying the water a bit.

@yorkshire89
No, I’m afraid that’s not thought to be true now, but the longer it’s attached the more chance it has of passing it on. [Although it was policy in my NHS area to give prophylaxis antibiotic if the tick had been attached >24hrs, but this has been dropped now – it can affect whether you get the rash, affect future test results].

On the bright side, the overwhelming odds are that the tick wasn’t carrying Lyme. Studies I’ve seen found less 5% most areas, and up to ~10% in hotspots.
On the down side, ticks carry other nasties!!

Keep an eye on the bite site for any kind of rash, and any strange symptoms. If you have any – get to your GP and ask for antibiotics. This will buy you time to train to be your own doctor and find out how it really needs to be treated to give yourself the best chance tackling it.

There are currently 3 government reviews into Lyme, and NICE are reviewing their guidelines.
Here’s hoping they won’t be a whitewash.

The US [IDSA] guidelines have been ‘removed’ from the official ‘repository’ of documents, and are under review.
The EU has given 2m euro to a Dutch company to commercialise a, hopefully, more reliable/sensitive test.

I am still suffering 4 months after tick bite, but the NHS say I never had it, and if I did the antibiotics I’ve had will have fully cured it, despite many papers showing persistence and relapse. A diagnosis of CFS and Fibromyalgia awaits, along with accompanying anti-depressants. I just want to be able to get out on my bike again!!!

Sensitivity of current tests

@Jamb:
It’s worse that that. With Lyme they know the current tests are poor, but not only stick their fingers in their ears, they swear black is blue that the tests are definitive and refuse any further treatment, then call it a made up title of ‘Post Treatment Lyme Disease’ or use the fact there is no test for CFS or Fybro to chuck you into that waste basket and “Oh dear, no cure. Don’t come back”

CG – not followed up for lymes specifically but plenty of follow up from a now sadly retired gp. Got a diagnosis and successful treatment for something else.

I didn’t think lymes was likely as hasn’t been ‘ticked’ at the time. But it made sense to investigate it

MrAdamW got a tick bite – the usual bullseye inflammation and went to the GP. The doc immediately said “lymes” and gave him some antibiotics and it was all fine.

In fact the doctor called in some other doctors and the nurse to take a peek and say “This is what lymes looks like”.

@AdamW: That’s great news. Gives me some hope, as when you get sucked into the Lyme rabbit-hole, you mainly come across people who are suffering, so it’s good to hear a positive story.

@scot thats a shocking photo and nothing to eat in the box either. How do they do that ?

Interesting reads above, and some interesting views too..

Whereas there’s absolutely no doubt that Lymes disease does exist and cause a myriad of symptoms, not every condition with a myriad of symptoms is lymes. nor is it always Vitamin D deficiency. Nor is it always depression. Nor is it always anaemia. Nor is it always thyroid disorder. Nor is it always ME.
But it could be.

Unfortunately, whereas the public opinion/disease du jour can vary, medical professionals still need to consider the likelyhood of it being one illness over another, taking into account the signs and tests.

I think the thing is, you may be 110% certain it’s lymes, but your doctor really DOES have to consider alternatives too – it’s a dangerous place to be, pigeon holed into one disease or another.

My GP reckons Lyme’s disease is the new ME.

I’m sure by that, they mean that wheras ME was ‘all the rage’ (bad phrase, but the best I could think of) at one point, then vit D deff was ‘all the rage’, now the focus is on lymes..?

DrP

I’m sure by that, they mean that wheras ME was ‘all the rage’ (bad phrase, but the best I could think of) at one point, then vit D deff was ‘all the rage’, now the focus is on lymes..?

That was how I read it, or a way to try and explain the unexplained. Upon arrival in Tasmania a few years back the doc was very keen to get my Vit D tested (due to me having gone in with a toe injuy) as due to being so far south I might not be getting enough sunlight… (having just left winter in the North West I reckoned it would probably be fine)

This also probably goes someway to explain why medical people are not allowed to give medical advice in threads like this…

The bottom line is that the NHS hopes that some patients will go away quietly and die.

The bottom line is that the NHS hopes that some patients will go away quietly and die.

Really they don’t, even the ones who make that sort of remark.

The bottom line is that the NHS hopes that some patients will go away quietly and die.

What an appalling, ignorant and insulting thing to say.

I think anyone who assumes that a bite from a wild animal can only result in one ailment is a little hard of thinking.

Whats annoying is that because lymes is “perceived” to be all the rage, theres almost an out of hand rejection of it at the first pass. I dont envy GP’s, but i think failing to acknowledge the inaccuracies in the current testing process does them no favours.

I’m currently reaching the end of a second 4-week course of antibiotics after being suspected of getting Lyme disease, now confirmed as best they can. Took me two doctor’s visits to be taken seriously. I knew I’d had a few ticks hitching a ride recently and I’d been in areas with confirmed cases so I was wary of it anyway. First one said it was too rare to even worry about, probably just worn out as I’d upped my riding through the summer. Rested for a week but just got worse so went back. Thankfully the second one (my regular doctor) is an outdoors type so knows it can be nasty, straight on the pills and bloods sent off. Didn’t even mention Lyme during the consultation, he just asked me straight after listing my symptoms ‘Had any ticks recently and where have you been?’. Had to do two courses of the pills after the first ones weren’t quite enough to clear it, hopefully the second will do it. The doc did a few tests to check it was Lyme as one isn’t reliable enough, most came back positive including the bloods.

It’s like it always is with the NHS, you need to get a doctor/specialist/nurse that cares and is knowledgeable about people with your lifestyle. Sadly, as I’ve experienced twice recently, that is not always the case.

I think they all care.

The difference is that they all behave differently, and they haven’t all read up on everything. That’s what IBM are trying to fix with Watson, incidentally.

I understand that Drs don’t/can’t know everything, but with Lyme/tick-borne infection I feel it’s something more than that.

The standard tests are known to have a sensitivity of as low as 50%, with Lyme neuroborreliosis having a 77% sensitivity – meaning that between 23% and 50% will get an incorrect diagnosis. [Notwithstanding all the other possible reasons for negative test results].
Although Lyme can be clinically diagnosed, and there are no tests to rule it out, Drs seem to rely on these inaccurate tests to rule it out and stop treatment.

There are no primary care guidelines for the treatment of Lyme disease which does not present with the EM rash. GP’s are told to refer to ID specialist or contact RIPL for specialist advice.
After having 2 –ve tests, my GP phoned RIPL, who told him I can’t have Lyme after the –ve tests, and the antibiotics I had had to date would have cured me anyway.

The RIPL stance on the tests is untenable, but also, there is no evidence to support the RIPL’s statement on the antibiotics curing Lyme, but there are numerous papers/studies, that even I as a layman can understand, which show persisting Lyme disease after the short course of antibiotic given by the NHS, and no papers showing a cure after the short course of antbiotics

What is going on?

Even the Public Health England ‘Suggested referral pathway..” states that “Relapse has been documented”, which is an understatement if you read up on other research. But, as soon as PHE acknowledge that “Relapse has been documented”, it puts the RIPL position in doubt.

In my case I was given a single dose of antibiotic straight after the bite, this has a risk of, according to PHE, ”treatment with inadequate antibiotics or immunosuppressants abrogates the immune response and can explain a negative test result”. RIPL and my GP are totally ignoring this additional risk factor of test failure in my case and have decided on no further treatment.

I am now being referred to a Rheumatologist, the wait for which takes me way beyond the transition period from acute Lyme to ‘Chronic Lyme’, which in the UK medical establishments eyes, is untreatable – Anti-depressants, CBT and GET.

There was initiative, backed by a NHS body, to identify the top 10 unknowns in the diagnosis and treatment of Lyme disease. Here are a few:
– How common is relapse and treatment failure?
– What is the optimal course of action if symptoms relapse?
– What is the best treatment for children and adults……..presenting without EM rash?
These are recognised unknowns, and the medical establishment are still making definitive statements and stopping treatment.

There are no Lyme specialist in the NHS. [Lyme is the fastest growing disease in the West].

NHS England don’t record all cases of Lyme in England, only positive tests carried out at Porton Down.
[It is a notifiable disease in Scotland, so all cases diagnosed by Drs are recorded].

RIPL use different test criteria to the Scottish test house.

The manufacturers of the test kit state that the tests should not be used to rule out an infection.

The NHS does not follow-up Lyme patients [even those they recognise as having Lyme] to monitor how effective the treatment is.

I don’t know what I’ve got. I was a healthy bloke who knew nothing about Lyme, and 7 days after being bitten by a tick was knocked sideways, and have ongoing symptoms 4 months later. All other ‘bloods’ are normal. I’m not doubting my GP wants me to get better, but I can’t understand his logic, and he can’t explain it to me – I have asked!!

All I am asking for is some evidence based medicine.

The evidence shows that Lyme persists and short courses of antibiotics don’t always cure it.
[Other evidence shows that the Lyme bug can change to an antibiotic resistant form when under attack from antibiotic and stays dormant until relapsing at a later date – The NHS doesn’t follow-up patients or collect data].

I understand that Lyme isn’t fully understood, and there is no recognised catch all cure. More research is needed, but if the UK establishment doesn’t recognise it as a problem, nothing will be done. I read somewhere that we are waiting for an answer to a question we haven’t asked yet.

There are Drs in the US who are treating 1000s of ‘Lyme’ patients, and claim to be reducing symptoms and improving their quality of life. I have seen doubts cast on the practices and motives of these Drs, but why doesn’t the NHS send a few Drs over there to find out if there is anything in it, or whether they are just Quacks – either way it will be a contribution the public health in the UK.

Believe me, in this case, prevention is easier than cure:
CHECK FOR TICKS

The NHS Choices page seems pretty comprehensive to me as lay person. It might be worth pointing your GP in this direction.

The bottom line is that the NHS hopes that some patients will go away quietly and die.

embarrassing. Perhaps you wrote that in haste?

The NHS Choices page seems pretty comprehensive to me as lay person. It might be worth pointing your GP in this direction.

I my case the Dr and RIPL have decided it’s not Lyme, so unfortunately I’d be wasting my time. We are not on that page.
I did provide my GP with independent information, certified by “The Information Standard” as being a reliable and trustworthy source of health information, and referenced by Public Health England, but he did not look at it once he had spoken to RIPL. My GP initially expressed an interest in the information as he was not familiar with Lyme, but chose not to go down that route. So much for patient involvement.

NHS Choices:
“Blood tests can be carried out to confirm the diagnosis after a few weeks, but these can be negative in the early stages of the infection. You may need to be re-tested if Lyme disease is still suspected after a negative test result.
In the UK, two types of blood test are used to ensure Lyme disease is diagnosed accurately. This is because a single blood test can sometimes produce a positive result even when a person doesn’t have the infection.”

RIPL won’t do the second, more accurate, “type of blood test” unless you test positive on the “first type”, which has up 50% false negatives, so you can’t win.

NHS Choices:
“There’s currently no clear consensus on the best treatment for post-infectious Lyme disease because the underlying cause is not yet clear. Be wary of internet sites offering alternative diagnostic tests and treatments that may not be supported by scientific evidence.”

The NHS approach is not supported by scientific evidence.

NHS Choices:
“If you have post-infectious Lyme disease or long-lasting symptoms, you may see a specialist in microbiology or infectious diseases.”

Mentions “post-infectious Lyme disease” a couple of times, but to be considered as having that you need to have been diagnosed with Lyme, so as I have not been diagnosed, I am referred to a rheumatologist, not infectious diseases or microbiology. They have decided on the basis of insensitive/inaccurate tests that I don’t have Lyme or other tick-borne disease.

I sound that I’ve got a downer on my GP, but I haven’t. He doesn’t know about Lyme, which I see as a fault of the system, and he has listened to me and given be a longer course of treatment than minimum guidelines, but once he had spoken to RIPL I’m guessing his hands were tied, as they are the ‘specialists’.

Something doesn’t seem right about the approach to Lyme.

The bottom line is that the NHS hopes that some patients will go away quietly and die.

What an utterly moronic and fcking stupid thing to say. I came out of hospital Out Patients in York yesterday after two years of injections to save my eyesight. It’s worked and it hasn’t cost me anything except a train fare every month.

My GP surgery is brilliant. In the past 5 years of being one of those diabetic types, they haven’t always got it right, it took longer than I would have liked to prove the statins were causing my problems, but working with the nurse on trialing doses and tablets I’m off them now as exercise is more important.

I have NEVER had the impression anyone working in the NHS wanted me to go away and die for an easy life.

In the spirit of trying to raise awareness, and to help other people who might be bitten by a tick, can I publicise the following to any health professionals on here:
RCGP Lyme Disease e-learning Course

It is FREE to ALL health professionals, and is worth 0.5 CPD credits. .

I’ve no idea what’s in it [it’s not accessible by the public], but its all official RCGP stuff – no conspiracy theories, etc 🙂

A different view from yesterdays Guardian:
Lyme Quackery

Lyme crops up about halfway down, and he goes after it with both barrels 🙂

Article on Lyme’s on the bbc website today

http://www.bbc.co.uk/news/science-environment-37252925

The bottom line is that the NHS hopes that some patients will go away quietly and die.

Every single NHS employee at every level that I have ever encountered* has been devoted to doing the best for their patients, despite services being stretched to breaking point. While it sounds like you have had some issues with the NHS and Lyme disease in some way (reading between the lines), that’s just an imbecilic and insulting thing to say.

*No direct connection to the NHS, just an appreciative recipient of treatment for myself and family across a spectrum of services from A&E and maternity through to oncology and palliative care.

I got the bullseye rash from a tiny tick in Germany – I was home and had almost forgotten the bite by the time the rash occurred.

I mentioned it to my mum and she made me go and demand the same antibiotics they use in Germany from my GP as I picked up the tick in a Lyme area. The doctor was fine about it in a better safe than sorry way. He also said the test was not reliable.

I’m glad I’m not a GP – this sounds like a nightmare to deal with! Patients with vague non-specific symptoms, yet firmly-held ideas of what’s wrong with them, which is counter to essentially every textbook/academic paper on the subject*. It’s often the entitled well-read educated classes who kick up the most fuss who feel they know more than the doctor on this subject.

To provide a bit of insight to those complaining about test accuracy: There are very few 100% accurate tests in medicine. Almost every test has false negative and false positive rates. Following Baysian probability, if you do the test on a wide range of patients (Eg everyone that has vague symptoms that could by Lyme), you end up with a low pre-test probability of disease. In that circumstance, a positive result is more likely to be a false positive than a true positive, and thus the test is meaningless. People requesting the test have to appreciate this and restrict the test accordingly.

*Im talking about “chronic Lyme infection” which is a very contentious issue in the medical literature, not acute Lyme which is well-documented.

superficial. Beautifully put…

There are many people with self-diagnosed illnesses who have a huge amount emotionally invested in the idea of a purely physical illness explaining their symptoms. Who have symptoms overlapping with those of depression but deny any element of any emotional or psychological causation. There are people who issue death threats against researchers who dare explore non-physical avenues. The Guardian link is interesting.

I don’t normally post in threads on these topics. There is sometimes something of the Conspiracy theory addict amongst some people with medically unexplained symptoms. A perception that all Drs are part of an industrial complex which is trying to subborn them. Or don’t care if they die it appears.

I’ve started to write a post on this thread several times but deleted them. And I won’t post again on this thread because I’ve been sucked in that way before. There are, I am absolutely sure, things to be learnt and improved. But that won’t necessarily be helped by people crusading with conviction and a closed mind to establish that they are right.

Two of the best posts I’ve read on this subject.

I’m one of those ‘complaining’ about test accuracy. although I didn’t think I was complaining, more just saying what is happening.
I put my experience up here in the hope that it encourages other like-minded outdoorsy types to check for ticks, and if someone more knowledgeable than me [and my GP] could chip in and give me some advice or shed some light on it, that would be a bonus.

The tests have been found to be least sensitive with early/acute Lyme. The sensistivity, i.e. how many times it gets the correct answer is around 50% at the early stage, i.e. in the realms of tossing a coin. The sensitivity increases as the disease progresses, and then, I think, drops off again.
The way the tests are tested for accuracy is infected blood/serum from animals and/or humans [infection confirmed by culturing the virus from the blood/serum] is tested and the number of correct, i.e. positive results counted.
So the test relied on by the NHS, and most other health ‘services’ around the world, mis-diagnoses around 50% of the time in the early stage. ~50% false negatives.

Also, in the very early stages the test can be useless as the body may not have produced any antibodies against the bug. The test measures the body’s reaction to the bug, not for the presence of the bug.
There are also a multitude of other reason why the test can give incorrect results.
This is why the guidelines say that Lyme is a clinical diagnosis, and the serology test should not be relied on.
Anecdotal evidence suggests this is not happening.

I was bitten by a tick and 7 days later started to experience a set of symptoms I’d never had before. A few options:
1. I picked up something from the tick.
2. The symptoms are totally independent of the tick bite.
3. The symptoms are psychosomatic [is that the right word? – all in my mind].

My preference would for it to be 3 then 2 then, a long way back 1. This would mean I haven’t got little bugs swimming round my system that can get into, and stuff, my joints, brain, eyes, heart, etc. i.e. I’m not looking for a Lyme disgnosis. I hope it is all in my mind.

The trouble that I face is that I have tested negative, but continue to have symptoms. The symptoms responded to a change in the antibiotic dose.
My GP/RIPL are ruling out Lyme disease based on a 50-50 test and stopped treating me.

My GP has referred me to a rheumatologist, ignoring the nausea, headaches, twitches, skin sensations, mind going blank, etc.

He has ruled out it being something other than Lyme I picked up from the tick – no referral to infectious disease/microbiology.
. Awaiting results.
.

The upshot is that I have had Lyme ruled out and treatment stopped on the basis of a 50-50 test.
The symptoms are ongoing. If I do/did have the Lyme bug, I’m now in the Post Treatment Lyme Disease Syndrome stage.
At some arbitrary point in the future this may become the unrecognised ‘Chronic Lyme’.

What would you do?
[The longer the bugs, that I may or may not have, remain untreated, the harder they are to treat……….do I feel lucky?]

So, if you don’t want to get sucked into the ‘Lyme Loonie’ world…..
CHECK FOR TICKS……..and your dog too!!!

If I’d definitely been bitten by a tick, and had the sort of hit-by-a-bus fatigue symptoms people describe for Lyme, and the GP told me to do one, then I’d just get on a course of the appropriate antibiotics myself.

I think, though, that it would be unusual to have to consider this sort of action as you would not get the stiff arm off a GP if you’d for sure had a bite. Like others on this thread, I’ve had ticks on me for prolonged periods, no bulls eye rash, and in both cases the doctors have been excellent [once for a tick on me for over 24 hours in Pennsylvania where Lyme is very prevalent].

That doesn’t quite sound like your situation, though, as you’ve already had a course or two of antibiotics? So I don’t really know what the second line of treatment would be here. I hope you get better in any case.