Illness, Injury and Medical Advice from the Internet

There's a lot wrong in what you're saying, sorry...

It may be 'rare' but in the situation where GP's are commonly giving incorrect diagnosis to patients and testing is unreliable, it's not possible to say with the kind of scientific certainty that you should be aspiring to.

The tests available were developed not as a clinical diagnostic tool but a reporting one: as such it's reliability is at best 80%. Some studies place this lower than 50%. That means even administered correctly, 60 of your GP friends 300 patients have likely been misdiagnosed by a test that was never intended to perform that role and then consequently dismissed and ridiculed by people like you who decide it's your "bugbear": Lyme should primarily be a clinical diagnosis and the test manufacturers explicitly state that it cannot rule out Lyme.

Additionally, the time people are tested is important; within 6 weeks of the bite people may not have produced enough antibodies to be detected, further depleting the value of the test and introducing higher possible misdiagnosis as many GP's don't know this, but against even current NICE guidelines, withold antibiotic therapy as they believe that it is essential to have a positive result prior to treatment even if the patient is symptomatic.

Add in further issues around GP's giving patients off the cuff and incorrect information about treatment duration, symptoms and a lack of need to repeat treatment if still symptomatic after the 7/10/14 days they might have given them depending on subjective belief, and there's enough there to create large online forums of genuinely ill people who are denied treatment by the NHS and face the kind of arrogant, passive annoyance that its staff adopt based on several generations of faulty science and testing, that your rant represents to me.

But yeah. Must be really annoying for you.

I remember you having a tough time being diagnosed with Lymes. How did you manage to get diagnosed in the end?

I appreciate that it seems that I am being dismissive of the disease and how it is treated by the NHS, but really my issue is with the people I know who go for a walk in the woods, find a tick on them and then spend months freaking out that they have Lymes. Its a thing.

@Stonehedge I wasn't having an issue with your statement at all. More a pointless statement in general as it didn't add anything of use.

My Mum self diagnosed with Lymes after having a tick bite and fought the NHS for several years for a positive diagnosis. Turned out to be something unrelated, a non infectious long term condition that happened to coincide with a tick bite.

On the other end of the scale, my friend Ivan contracted Lyme disease about ten years ago and has neurological damage and has had a pacemaker fitted due to the effects. On bad days, he is in a wheelchair.

I don't intend to make light of how serious it can be.

I was bitten on the foot on Saturday. By an insect (presumably). 3 bites.

Now very hot and swollen. Very painful.

A couple of weeks ago, had similar in Spain. Went to A&E (great experience on the EHIC) antihistamines prescribed including an injection in the glutinous maximus.

ah fuck it. This thread is daft.

I paid a lot of money to take my partially paralysed self and very ill gf to Switzerland to see a private doctor.

The tough times don't end with getting a diagnosis, unfortunately if the NHS spends months fucking around telling people it's stress or a virus or a sinus infection the previously easily resolved infection becomes systemic and much harder-if not impossible-to shift.

And, even if or when the borellia and possibly also numerous confections like babesia, Bartonella, erlichia or mycoplasma are treated, many people have residual damage to the nervous and immune systems to live with and develop autoimmune disorders like lupus or hashimotos.

All of this is most likely without NHS support because they didn't get that 'official' diagnosis and they get written off as cranks by people like you...

So, much as I appreciate that it must be really hard for you working somewhere and not getting ill, ask yourself if your annoyance is proportionate and if there might not be a genuine issue creating this situation of fear and mistrust.

.

I do appreciate you taking the time to talk to me about this.

I hadn't fully appreciated that NHS testing is pointless.

I will stand by my observation that there is strong public paranoia about Lymes out there, a potentially serious disease that even if hugely under reported is still rare.

My girlfriend got lymes from a single tick bite (Scottish Island) three years ago. As a family, we are now in the "freakout" group as, even though she got it diagnosed within a few months, its still taken three years to recover and she still has little relapses. It also seems to have helped fuck her immune system in general.

We also know three people local to us who have contracted it from Richmond Park. Two waited so long for a diagnosis, that they are still really ill. They both have young children which they struggle to look after due to the disease. One appears to have had it during pregnancy, and that child has some serious health issues. that could well be connected. Its a fucking grim thing you can catch from a park down the road.

When people get bitten by ticks they need to be concerned and know what to do. Doctors too. I got bitten recently, my GP in Kingston was pretty good, but still recommended I get a blood test there and then, even though its pretty common knowledge that you can't test straight away as it takes time for the signals to appear.

I got a cold at around the same time as the bites. I think it is unconnected, but to be on the safe side, I'm on two weeks of doxycylcine. Anyone who gets bitten and is concerned should just demand two weeks of that from their GP.

It sounds like my opinion was a poor one.

Where do you send off for a Chronic Lyme Diagnosis?

I scanned that blog. Some huge claims being made without much supporting evidence to be honest: the revised NICE guidelines explicitly recognise the science around Lyme has been poor on all sides.

For you as a clinician to so strongly adhere to a 'skeptic' position based on some kind of mythbusting blog is concerning in itself...

ah fuck it. This thread is daft.

Great to have a resident doctor contribute. Perfectly embodiment of thousands of people's experiences dealing with the NHS...

Yeah the paranoia is born from the poor way that the NHS has dealt with the disease tbh as that's where the horror stories are coming from: there's nothing worse than watching your partner/loved one become totally incapacitated over a period of months or years and not be able to do much for them.

blandford fly?

I got bitten by what I thought was a Blandford Fly a few years ago - my calf swelled up to massive proportions and went kind of hard, while I developed flu like symptoms. Then 6 hours later my wife went into labour, so you know, it was bad, but at least it wasn't me giving birth!

I don’t think its is appropriate for me to respond.
Furthermore - this thread is on ignore, and I don’t appreciate you attacking me or the nhs personally.

The only thing I will add is that I’m sorry that you are unhappy with your treatment, and I am deeply unhappy that someone took a lot of money from a vulnerable person. That goes against all our training and beliefs. That is what upsets me, more than anything you could possibly say to me.

Again, thanks for demonstrating the issue at hand here.

If you think that you-or the NHS-should be beyond reproach when there are hundreds and thousands of incidences of malpractice relating to this subject then that is a pretty self-serving position to adopt and it's deeply unhelpful to resolving a situation that is being sustained by such attitudes. The link you posted to is pretty much just confirmation bias made liminal.

I don't know who the vulnerable person is you're referring to-if it's me I can only say that I've got the intelligence and self-awareness to detect bullshit for myself, as well as the scientific academic experience to evaluate multiple sources of data and decide what I think is credible. The money I've paid has gone to two EU accredited labs who could have returned a positive or negative result and not further benefited financially from either decision. They amount of money the Swiss doctor made from my consultation is about 100 euros. Is that enough money for a Swiss doctor to blow smoke up a sick person's arse for?

Your blog poster writes off the few scientists at John Hopkins actually doing in-depth research into Lyme as 'pseudo scientists' despite regularly publishing in peer reviewed journals and again-not profiting from their work beyond the salaries they earn from their research. I can tell you that in the two years since that blog post their work has become increasingly recognised, and has led to breakthroughs in treating systemic lyme disease in evaluating the effectiveness of different antibiotics and their combinations in treating lyme.

You're not interested, and that's fine, but take the same critical eye you're applying to people like me and look at yourself and your own attitudes with it. If nothing else, i would recommend you look at the Royal College of General Practitioner's online Lyme Toolkit, and possibly do their short course for practitioners.

https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/lyme-disease-toolkit.aspx

For the last month or so my feet have felt very strange - sort of numbish, tingly, cold - like my shoes are too tight. All the time. I've probably got MS haven't I

I hope for you that you haven’t

Thanks, i shouldn't joke about these things I know. I had better see a real doctor

Blisters.

I've had a pair of boots I love that I've worn literally every day for the past 5 years. They need repairs so I bought a pair of trainery things in the interim - stupidly wore them out today without breaking them in properly (or maybe they're just too small). My heels are fucked - bleeding blisters and pain up my achilles. Got to drive 8 hours tomorrow, 10 hour shoot Thursday and 8 hour drive back Thursday night.

My suggestion to myself is wrap gaffer tape around my heels, then skull some ibuprofen.

Any advances?

Compeed is your friend.

Inadine dressings if the blisters are weeping too much for compeed. With the inadine you will need to have something else over it, I use tegaderm as it's more breathable than gaffa tape😉.

Then skull ibuprofen.

^ This guy blisters.

Cheers, will pop to 'Boots' in the morning.