Lyme disease

elaine

thank u for the info, most helpfull for my dla application. so the cooking test relates to that i see.

may i ask what test were done by ur gp in order to get your lyme diagnosis though please?

many thanks

martin

I was diagnosed by a private doctor in Bolton, who used live blood microscopy to see the borrelia spirochaetes in my blood. I went to see him because I had lots of thyroid symptoms (fatigue, depression, brain fog etc) but as far as the NHS was concerned my blood tests were within range and they weren’t going to offer anything other than thyroxine; I knew the Bolton doc was willing to prescribe alternatives.

I have never asked the NHS to diagnose Lyme, I think their view is it’s rare so they won’t test for it (slight flaw in the logic there!), and, if they do, the test they use is unreliable (lots of false negatives) and the lab in Southampton that does the analysis doesn’t believe chronic Lyme exists. Probably you know this and that’s why you’re asking the question.

Personally I’m not sure a Lyme diagnosis is that helpful when there’s no definite cure. None of the huge doses of antibiotics etc I have been prescribed to ‘reduce my bacterial load’ have actually improved my health. I have had a slight (but at this level still worthwhile) reduction in the symptom of fatigue from D-ribose and Low Dose Naltrexone.

You may be aware of the Eurolyme yahoo group, and websites for Lyme Disease Action and Borreliosis and Associated Diseases Awareness UK.

With DLA, I’d say don’t get too hung up on cooking – as far as I understand they’re not so interested in cooking per se, but how your inability to do the tasks involved in cooking shows how generally disabled you are.

Elaine

Many thanks for ur reply. Well done on getting diagnosed, its unfortunate that u had 2 go private tho & yes thats why i asked the question. my gp or the nhs as a whole have no time for Lyme as u know.

to b honest tho id love a definate diagnosis of either lyme or me/cfs (not that i want 2 b ill, but just 2 prove im not mad) ur right in saying its not really the diagnosis that counts but more how u live & manage the symptoms in ur everyday life. i just feel that without the backing of my doctors how am i ever going 2 convince the DWP.

I am a member of the chronic epstine barr forum, they deal with me/cfs, lyme, mono etc but they r either mostly in the states with private healthcare, its good just 2 talk 2 others in the same position sometimes.

i wish u & Susan all the health in the future & hope some of the medications will soon give u some relief.

cheers

Martin

There is a ‘NHS map of medicine healthguide’ for Lyme Disease which might (or might not) help inform/persuade your GP. The BADA website has a useful page on bacterial infection, and the LDA website has resources for doctors.

Many people on the Eurolyme forum are having, or wishing they could afford, private treatment, or self-treating, but they are in UK and Europe not the US.

The DWP does actually accept the existence of Lyme, amazingly – they have it officially listed as an industrial disease (for forestry workers only – which I’m not); the last IB medical I had the doc had even heard of it – I put it down on the form and I don’t think they ever got a report from my GP or private doctor (they certainly didn’t get one for my DLA claim).

Hope this helps. All the best.

thanks elaine x

Hi Martin

So sorry, I've not responded to your query on how I was diagnosed, I've been v ill on antibiotics - never again!

I asked my GP to refer me to a specialist to investigate the possibility of Lyme disease to see if that was the cause of my arthrits/neurological symptons. I'd lived in America and Canada where Lyme disease is prevalent, for some time, 20 odd years ago, and could remember, what could have been, a tick bite. I'd suffered some symptons for years which had all been diagnosed and treated separately ie jaw problems/pain, IBS etc.
It was a huge help to get a diagnosis as I too thought I was going mad even though there is no cure.
Good luck to you and take care
Susan