UKC

A friend of mine has been diagnosed with Lyme Disease but is struggling to speak with doctors with knowledge of the disease and treatment.

Can anyone recommend a specialist, ideally in the north of England but i guess anywhere as long as he can get the right treatment.

In reply to geordiepie:

Ask these guys https://www.uclh.nhs.uk/OurServices/ServiceA-Z/HTD/Pages/Home.aspx

In reply to geordiepie:

The GP should extremely easily be able to refer your pal to an Infectious Disease Consultant.

In reply to geordiepie:

Don't delay with this - I've heard of several people (including climbers & runners) who've developed chronic Lyme disease - which many GPs still don't believe in! - similar to ME/CFS, & have had their lives all but ruined. Prompt intervention is key.

In reply to geordiepie:

Hi Geordiepie,

I was bitten by a tick back at the end of May. I had no classic bulls eye rash (only 2/3rds of cases actually have this) but began to feel very unwell shortly after. The blood test is known to be unreliable and my test came back negative, which is not uncommon. My GP eventually treated me for suspected Lyme anyway. I'm still not 100% but gradually improving thankfully. The NHS is all but useless when it comes to Lyme. I had to do a lot of research on my own and make a nuisance of myself to be taken seriously. Lyme can be life-altering for some people - get your friend to take it seriously and don't let the Dr's fob them off!

If your friend has had the bull's eye rash or a positive from the blood test then they need to be given Doxycycline at a high dose (400mg daily) for a minimum for 4 weeks. If caught early, Lyme is treatable, but if left it can become chronic.

My best advice is to do a lot of reading on the Lyme Disease UK website : https://lymediseaseuk.com/
Lyme Disease UK also have a very helpful and active facebook group - it is worth joining. I think I'm right in saying they can also provide a list of Lyme Doctors on request. I had to show my Dr information from them before he would treat me.

Feel free to PM me if you want more help.

Ben.

In reply to Phil Murray:

Agree, my partner is suffering badly at the moment with what might be chronic Lyme (difficult to get a diagnosis here in France). She's been off work for some 14 months & doesn't seem to be getting better. If you have even the slightest doubt, get treated

In reply to broc:

Crikey, I've just dipped into that website and have been drowned under a wave of dodgy science. Talk of "dirty electricity" and "WiFi can cause the release of 600 x more biotoxins than normal". Impressive considering their claim that their community contains "some of the kindest, most intelligent people on the planet." "Disclaimer: We are not doctors or medical professionals." Indeed!

It seems clear that there is a lack of awareness of Lyme disease in many GPs, and (at least) anecdotally Lyme disease seems to be increasing in prevalence in the UK. However, we now seem to be reaching a point where a large number of people who are advocating the existence of chronic Lyme disease are happy to go all-out on the weird pseudoscience front.

In reply to Mike Peacock:

Absolutely agree! Read everything with a pinch of salt. However, once past the dodgy science, there is also some very good advice.

The facebook group I mentioned above is full of hypochondriacs advocating all sorts of bizarre supplements for self treatment. These can safely be ignored. However, the group does allow you to access some excellent notes on treatment and information that you can present to a GP to help fight your case.

In reply to broc:

Fair enough. Seems a shame that the two can't be separated!

In reply to geordiepie:

Your friend will struggle to get much help unless it is a very recent case of Lyme. Knowledge of longer term Lyme in the UK medical system is extremely poor. My wife has Lyme due to insufficient early antibiotic treatment which led to the disease lying dormant only to surface years later. She had the bullseye rash, positive blood tests and the early symptoms, a lot of sufferers have none of the above. She has Lyme carditis, which has been highlighted recently by rugby player Matt Dawson.
It took over a year of seeing many doctors before we got a diagnosis. She is loads better now, but only after two years of antibiotics ( paid for privately).
Lyme effects everyone differently, common misdiagnosis include CFS, fibromyalgia, MS, and many more.
I agree that the Facebook group may sound pretty mad but there are a lot of ill people in it willing to try anything after being shat upon by many health professionals.
I recommend your friend gets researching with a very open mind, treating long term Lyme is more about management rather than a cure, symptoms will come and go unfortunately

In reply to Phil Murray:


There's a very good reason for that - other than quacks and the self-diagnosed, there is zero evidence that such a thing exists.

Undiagnosed and untreated "normal" Lyme disease is another matter of course.

In reply to Doug:

I got Lymes in France and the doctor gave me out of his surgery a antibiotics and sent me for blood test that same day and got the result the following morning as positive and subscribed 2 Week
of antibiotics I picked up at the chemist total cost doctor 25e blood test 40e tablets 8euro
I had Lymes 3 weeks before doctors visit and it affected my left ear drum hence nearly deaf in that ear
Keith s

In reply to geordiepie:

Thanks for the replies and advice all I'll pass it on. Unfortunately it wasn't an early diagnosis but hopefully the right treatment can be found

In reply to broc:
Hi Ben

Thanks for the advice. Hope you're back to 100% soon.

In reply to keith sanders:

France seems OK if you get checked immediately after being bitten (although apparently this varies from place to place) but my partner had no symptoms for several years but then fell ill. Although her symptoms matched Lymes (but also some other illnesses) it took a couple of years before anyone suggested a test, which was positive. But the usual antibiotic treatment, although giving some short term benefit, didn't work in the long term. Latest idea is that she's been cured of Lyme, but is now suffering from damage to nerves due to the infection. Although much depends on which specialist she speaks to.

In reply to Doug:

Yes I'm with you on knowing the symptoms as they do hide themselves on so many others and that is the problem
I can understand not noticing I just had a hunch it was more than just severe pains in my old joints and then a day or so I was back climbing feeling ok and then back with the aches this went on for about 3/4 weeks so I googled my symptoms and Lymes popped up
Damaged nerves can be a result of Lymes

Keith s

In reply to geordiepie:

I hope you guys find someone. I got Lyme Disease from a tick bite kayaking in Canada in August. Luckily a friend recognised it and packed me off to the doctor and 2 weeks of antibiotics knocked out the worst symptoms...but 2.5 months on and I still can't do any of the things I enjoy like trail running, kayaking, heading to the hills, swimming, ummm, a full day at work, dinner with friends (getting my strength back at the bouldering wall finally! woo). The hardest part has been feeling really useless and exhausted, but needing to pester the doctors to get any follow up. They keep saying that I should go to the tropical diseases clinic but haven't referred me, and as Canada doesn't count as a tropical country the clinic won't see me without a referral. It's really frustrating and demoralising but I'm going to take what people have said here and keep mythering as I want my life back!

In reply to CuenteradelDesierto:

Keep pestering your doctor to refer you to the clinic. Be really persistent.

In reply to geordiepie:

Raigmore Hospital in Inverness specialise in it. They see so many cases.

In reply to Simon Caldwell:


I missed this reply.

So I'm curious - there's also no 100% firm evidence that CFS/ME "exists" either - do you think that's also quacks and self-diagnosed people? and disbelieving GPs are right in their view? (Mine wasn't, nor was my consultant - didn't stop me having the illness severely for 6 years though)

I know of two people with chronic Lyme who've had their lives ruined; the patient voice is actually crucial; there was no lab test for illnesses such as M.S. in the past, and many sufferers were told they had "hysteria" at the time. Absence of (current) evidence is not evidence of absense.