Lyme disease: interesting latest stats from Public Health England

For whoever asked about Scotland…It is rare that a couple of DoE groups,ie 12-14 kids don’t have at least 2/3 attached. I now dish out a recognition sheet with the other blurb.

From personal experience of suffering with as yet undiagnosed long term health issues, you get what you pay for with the NHS (i.e. very little).

They are good at patching you up if you’ve been involved with an accident but that’s about it.

Private in the UK doesn’t necessarily get you much better as you still typically have to go through your GP I believe. Difference though I guess is if you push for a referral you’ll get it rather than GP always considering the cost, but if the GP doesn’t know about Lyme disease because they’re an NHS GP, then they could still be dismissive about it.

Duckman, that’s excellent and something we need outdoor providers to do much more of.

Private in the UK doesn’t necessarily get you much better as you still typically have to go through your GP I believe.

Not necessarily. I would say however that some private doctors are still subject to the same regulation as NHS doctors and, as I’ve found out, it can mean that they’re no better due to said regulation.

I’ve not read the links etc but my knowledge of Lymes comes from one of my neighbours, a lady who has lived nearby for about 15 years.

She had all kinds of health issues and no one believed her, GP kept doing tests coming back negative, hospital same, put a real strain on her marriage and the kids, everyone thought she was an hypochondriacte (sp)

After private tests, think she went to the states, it was diagnosed and treated. She is loads better now, but the strain on her marriage is still apparent 🙁

Seems tests often can be false negative due to a number of factors that will hide it.

Tests

@simmy
Now that I’m in the “been bitten by a tick and 7 days later start feeling like I’ve been hit by a truck and been mainlining absinthe” world, stories like your neighbours seem to be tragically common, and it’s what I’m trying to avoid.

My GP has been good, but readily admit they know nothing about Lyme or other tick borne infections, so has come to the end of the line of what they are able to do.

I’m looking for private Drs in UK who know about Lyme, but from what I can gather there aren’t any.
[There are stories of a few being warned by GMC, and have stopped deviating from the inadequate NHS guidelines].
There seems to be one big name clinic in the UK who treat Lyme, but I can’t afford their prices.
Anyone know of a private Dr who is sympathetic to tick borne infection patients?

From personal experience of suffering with as yet undiagnosed long term health issues, you get what you pay for with the NHS (i.e. very little).

devash – that sounds hard. As a starting point I’d suggest obtaining a copy of all of your medical records, you’re legally entitled to this and details here:

http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160

I’m kicking myself for not getting mine earlier but as they proved to be a bit of a revelation.

This website is good and may give you some ideas re your health issues:

http://www.drmyhill.co.uk/wiki/Main_Page

I’m looking for private Drs in UK who know about Lyme, but from what I can gather there aren’t any.
[There are stories of a few being warned by GMC, and have stopped deviating from the inadequate NHS guidelines].
There seems to be one big name clinic in the UK who treat Lyme, but I can’t afford their prices.
Anyone know of a private Dr who is sympathetic to tick borne infection patients?

whimbrel – get in touch, e-mail in my profile.

CG has offered assistance, but I think my neighbour goes somewhere in London for treatment and stays there for a few days.

The Doc who had treated me, and gave me a life back, was jumped on by the GMC for the heinous crime of actually making patients better. Yes, it took a lot of antibiotics. He monitored my condition, as I did subjectively.

I wish I’d kept a diary, as various odd, even unlikely, symptoms fell away during treatment: heartburn for example.

Simmy – YHM.

Now that I’m in the “been bitten by a tick and 7 days later start feeling like I’ve been hit by a truck and been mainlining absinthe” world,

I sympathise. Though I wonder if everyone will experience this.

IME, it started small and built up gradually, in incremental steps. Maybe this varies with the scale of the original infection, and perhaps with a degree or not of an individual’s resistance. The bacteria is said to reproduce slowly, and to spend much time hiding.

The Doc who had treated me, and gave me a life back, was jumped on by the GMC for the heinous crime of actually making patients better. Yes, it took a lot of antibiotics. He monitored my condition, as I did subjectively.

Disclaimer: I work in the NHS
I’m not dismissing either long-term/late/chronic Lyme as a disease state, or these doctors as clinicians but it’s a real shame that they don’t seem to publish – even some case series would be a start and might drive better acceptance of their methods.
(If they do publish, I’d be really (as in ‘genuinely’) interested in a linky or two)

s-p I suggest you try the LDA website…

Home

… I hope that’s a start.

PS

http://www.ncbi.nlm.nih.gov/pubmed/27440843

(I can only see the abstract)

This is what doctors can be up against:

http://www.heraldscotland.com/news/13492970.display/

Also a Scottish GP called Dr Skinner who successfully treated thyroid patients was reported to the GMC by a GP. He faced countless Fitness to Practice hearings where patients wrote many letters of support crediting him with getting their health back. Dr Skinner had a fatal heart attack, guess who contributed to that.

And there’s more. 😐

Thanks for info.
C_G: Will email you later today.

SOG:
In one way I am lucky as I saw the feeding tick and got symptoms a week or so later, so have been able to connect the two and have opportunity to try to do something.
I understand that people can go months/years with no symptoms, or mild symptoms that they overlook until it starts to get serious.

I have been in touch with LDA[/url] who are accredited by the ‘Information Standard’ for giving health information. They operate an email advice service for the public.
They advised that there can be the full range of symptom severity and timescales.
Every symptom I had/have could be explained individually by something else other than the tick bite, but I feel I had a lifetimes worth of aliments/pains in a day. Individual symptoms lasted for hours to days – it was/is weird.
At the moment I’m still on antibiotics [run out next week] and the symptoms are less severe and I only have two or three at a time, but the combination of pains still change on a day to day basis, and I will get shooting pains in one place for an hour, then joint pain somewhere else for 10 minutes.

This is a good reason to CHECK FOR TICKS, as you can monitor how you or your kids feel, and note if there are any patterns of even mild symptoms after a tick bite, and can mention this to your GP. If you don’t know you have been bitten, a tick borne infection will probably not even be considered or tested for.

One for SP

US oncology Doc talk of his LD experience. Stick to the end for the heart transplant story, one of the most heart-warming things I’ve ever seen.

(edit) – Every day’s a learning day, I can add Really Wierd dreams to the list of symptoms.

c_g – do you know Dr Myhill’s story about the pig?

whimbrel – Member

Viable spirochetes found in genital cultures

quote from one of the referees that didn’t approve the article

“The design of these experiments to test the hypothesis that viable spirochetes exist in genital secretions is appropriate. However, the implementation of the experiments, presentation, and interpretation of data is questionable”

c_g – do you know Dr Myhill’s story about the pig?

Yes sog, I really do despair!

I looked for that story earlier, but couldn’t find it. It might be worth sharing, if you know where to look.

sog – have tried but no luck. Would strongly suspect that the regulator has insisted on its removal due to their stupidity! They don’t like Dr M, to put it mildly.

I’m looking for private Drs in UK who know about Lyme, but from what I can gather there aren’t any.

I vaguely remember reading about a centre that had opened (or was due to be opened) in the UK which would offer private testing and treatment for Lyme. I can’t find the link though.

This website is good and may give you some ideas re your health issues:

http://www.drmyhill.co.uk/wiki/Main_Page

Cheers, I’ll have a read of that website tonight. I’ve had loads of tests done over the years (heart workup, blood tests, vitamin levels, thyroud, CT scans, MRI scans etc) and had started to think of exploring the possibility of Lyme having lived in a high risk area for a while where our dogs used to pick up two or three ticks every walk unless we had them on Frontline tick spray. I’ve been bitten a couple of times but never remember a rash though.

In the interests of balance, it would be an idea to look at the interactions of Dr Myhill and the GMC and the surrounding controversy.

Caveat Emptor.

Cheers, I’ll have a read of that website tonight. I’ve had loads of tests done over the years (heart workup, blood tests, vitamin levels, thyroud, CT scans, MRI scans etc) and had started to think of exploring the possibility of Lyme having lived in a high risk area for a while where our dogs used to pick up two or three ticks every walk unless we had them on Frontline tick spray. I’ve been bitten a couple of times but never remember a rash though.

devash – you need to find out where in the range your blood results fall. My experience is that some of mine were so low that they weren’t even in the range, were highlighted by the lab and ignored by the doctor. Sorry but you need to put the work in to find out what’s going on.

http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing

– is a good read.

Better safe than sorry.

Craghoppers ‘Nosilife’ is my choice of clobber for any outdoor excursions, especially at this time of year when the bracken’ s at its peak.

I’ve bought their largest size shirts on the basis that any ticks will end up on the shirt sleeves but not live to make it past the Nosilfe wicking layer, underneath.

I’d even wear some some velcro’d trouser clips on both legs to keep the b£@@:;s out in conjunction with the Nosilife trousers in a longer leg length.

They also have convertible cargos so you can wear them as shorts when free of the ‘junglies’

I haven’t completely cornered the market, and as well as eBay and Amazon, the odd bargain can be found at;

Outdoor Look

Jackson Sports

Hawkshead Outdoors

Purple Turtle

Uttings

Though, going back to the op, the relatively higher incidence of Lymes among women could be due to the manner in which they relieve themselves.

Maybe the ‘She-wee’ would be a good idea?

@poah: OK, I retract my bllx statement. I was wrong.

I don’t want to detract from what I assume was c_g’s intent when starting the thread – to highlight the increase in cases as a PSA to everyone (as was the intent behind my contributions)
KEEP CHECKING FOR TICKS

Also Permethrin Spray

The despicable Sports Direct have some cheap prices on ladies Nosilife clothing.

We are fully Nosilife and permethrin and smidge kitted out now.
Horse/bolted I know 😳

rWe live in a wood. We have a lot of deer, and they leave a lot of ticks on the undergrowth (horrible ground elder). Vast amounts of glyphosate has cleared a lot of the undergrowth, but we get a lot of ticks still. The boy can’t even play football without checking himself after retrieving the ball from a hedge.

Rather than buy a permethrin spray, just make you own solution and put clothes (and shoes) in – let them drip dry. You can make a bucket, and treat loads of clothes in one go.

Murcan Stuff

make sure you get the 10% rather than the 35%, which is in petrol basically.

The other idea is to make your own tick spray. Deet just hides the body from the insect/arachnid. It doesn’t kill them. Something like Cedar oil will (and having seen it in action on a caught tick, it does).

So make a solution up – 50ml Witchhazel, 50ml water, then a few ml of cedar, citronella, tea tree, lavender, Oregano etc. Some of the oils mask your scent, others kill on contact. Smells a bit mind! Really does work though.

slowoldgit: Would be interested if you have info on possible private drs, etc. Contact details in profile

They’re just horrible things. I was fell running in the Lakes on Saturday and at one point I had to beat my way through chest high bracken thinking it was probably tick city. Checked my self, showered, etc but today I’ve found one on my leg. Being a dentist I have dexterity and instruments available to remove it (and a microscope to view/photo it!) but yuck. Pretty sure it’s just been crawling about my hairs for a couple of days and has only just latched on but I feel all itchy now. Still, it amused the staff 🙂

Ticked off![/url]

How on earth do you notice them if they are that small? I always check myself as often cycle through overgrown common land but had always assumed I’d see them by just looking in shower, think my hair would hide them.

Whimbrell – you have mail.

Paul – if they’re amused at your problem, ask them to check you where the sun doesn’t shine.

PS I’ve had a little one under my watch. It looked just like I’d stabbed myself on a sloe thorn. Except for where it was. You know the way that blackthorn pricks and scratches always look red and angry.

Just got home and found another one. I don’t think I’ve ever found one before it bit me but I’ve got to know what the itchy spot feels like now when they do bite. I make sure I get them off ASAP.

You’re right slowoldgit, it’s no laughing matter. Also my wife is away so I could do with someone to check there……might get struck off though so probably not worth it.

Thanks for the links and video (slow) all very interesting. The Welsh doctors story is appalling, “misplaced letters” classic CYA / coverup stuff.

Education education education .. plus NHS / GMA pulling their fingers out.

That Dr Myhill is tough, but in the right way. She wrote somewhere about falling off her horse, the injury process and her recovery. She’d be no pushover.

I know of a couple of keepers who wear flea collars like bicycle clips. Reckon it works well for them.