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Lyme Disease

(33 Posts)
BijouxBibi Mon 11-Jan-16 11:10:06

Anyone have this? Anyone had it? I'm truly astonished at the lack of Lyme literate doctors in this country.

I believe my husband has it. He was bitten by a tick in late September but didn't realise that's what it was. As a consequence, he just ignored it. He plays high level golf at a club that's based on a Heath and full of deer and it's obviously where it happened.

He started experiencing symptoms in November - racing heart, ectopic beats, feeling off balance, brain fog, tingling sensations, pressure in his head and ears, feeling drained etc. It's worth mentioning that he's not been ill in two decades and is fit and healthy usually, he couldn't recall the last time he'd seen a doctor

Anyway, he had blood tests for everything and heart readings and all same back normal. The doctor refuses to treat him with antibiotics as he says its 'just one of those things' and ' all tests show you're not seriously ill so just see how you go.' It's been 9 weeks, I'm shocked that they'll dismiss someone who's got no history of illness bit is suddenly present in with all these symptoms

Anyway, I knew a little about Lyme and I know that time is of the essence when it comes to treating so I've bought him a two month supply of doxycycline from an online chemist - reputable I hasten to add! He's also takin oil of oregano and garlic along with 40mg of doxy a day. This is with advice from the Lyme disease association who are very good

Anyway, I wanted to know if we are alone in this? The LDA association believe that if you've been bitten by a tick and you have the symptoms then you must be treated. There is only one test available on the NHS for Lyme and it's wildly inaccurate.

Any experiences?

BijouxBibi Mon 11-Jan-16 11:11:31

Oh and LD mimics over 300 other illnesses. I truly believe that there'll be people out there who have it as the result of a bite but have been fobbed off with a diagnosis of chronic fatigue syndrome or fibromyalgia

SnuffleGruntSnorter Mon 11-Jan-16 11:15:19

How do you know it's Lyme disease and not one of the other 300 illnesses it mimics?

The LDA advised you to order antibiotics online without a prescription? hmm no matter how reputable you may say they are, they're not if they're sending POMs without a prescription.

I understand your frustration but please see another GP for a second opinion m. Your current course of action is irresponsible.

BijouxBibi Mon 11-Jan-16 14:16:38

I take it you don't know about LD and haven't had it?

It's perfectly fine to order doxycycline online. Most people use it for when they go travelling as its used for malaria prevention. There really is nothing irresponsible about it, it's very readily available. And the guidelines are this ... If you have been bitten by a tick AND you then develop the symptoms of Lyme, you should treat as if you have it. The only NHS test is not accurate in 70% of cases.

But it'd be great if you could point me in the direction of a Lyme literate doctor?? Or do you not know anything about Lyme?

BijouxBibi Mon 11-Jan-16 14:17:52

And he's seen three doctors. They don't even know the Lyme guidelines set out by their very own governing body, the Royal College of GPs.

SnuffleGruntSnorter Mon 11-Jan-16 14:24:21

Ok, I concede you're the leading expert not only on Lyme disease but all the conditions that can have a similar presentation so you're perfectly able to diagnose, treat and exclude other courses.

Your google search is clearly more valuable than any medical degree.

You're just asking for people who agree with you and your actions then? Not any alternative perspectives.

BijouxBibi Mon 11-Jan-16 14:29:11

As per my opening post, I'm looking for someone who has had it or currently has it.

Of course I'm not an expert but unless you have anything you can add to the discussion about Lyme then there's not much point in commenting is there?

I'm not in the habit of ordering drugs online as a rule

Sometimesithinkimbonkers Mon 11-Jan-16 14:33:53

My husband had all these symptoms ... He was dx with MS!

BijouxBibi Mon 11-Jan-16 14:41:24

The doctor has ruled out MS.. He says its just not even worthy of consideration. I did initially think this myself so he suggested it to the dr who laughed!

He has no numbness as such and no vision issues.. He has a tingly pressure feeling at the base of his skull and round his ears and sometimes in both his hands and sometimes in one leg.. Not numb .. Tingly. Along with feeling off balance .. Not dizzy, just a tiny bit unsteady but he's not unsteady , he just feels it but that's a little better now

Hmm, should he push for a referral to a neurologist?

The doctor has done full bloods, he doesn't have glandular fever, diabetes, low iron, low B12, no infection markers and no cholesterol or blood pressure markers. Nothing hurts and he doesn't feel sick . He has ectopic beats and his heart races sometimes - this was his first symptom

This is very frustrating as it's been 9 weeks now and it's probably why I sound so pissed off so I apologise

SnuffleGruntSnorter Mon 11-Jan-16 14:45:16

I hope your husband feels better soon. And I hope you're less rude to others who try to help you.

hides thread

BijouxBibi Mon 11-Jan-16 14:45:16

He's 43 by the way and fit and healthy usually. Big gym goer and golfer, not overweight at all and a non smoker/ drinker. Not had a dY off work sick in decades. Until all of this

BijouxBibi Mon 11-Jan-16 14:45:57

Please see my last line of my last message snuffle. I don't mean to be rude , I just need advice

Jellykat Mon 11-Jan-16 14:57:44

I have a young friend who contracted Lymes 14 years ago.
She was passed from one consultant to another, who diagnosed Arthritis, CFS, ME - virtually everything over that time, although we live in a Lymes hotspot and she lives on a farm, the various GPs never looked at Lymes.. I'm afraid that over the 9 years that elapsed, the Lymes has affected every organ in her body.
She started seeing consultants at The Breakspear trust, who sent bloods over to America and confirmed its Lymes. She was on Antibiotics for 3 years, but once Lymes gets hold, it hides and reappears. She is able to function atm with crutches and strict diet management, but things change monthly.
Basically, you have to catch it early for the antibiotics to work, if you suspect it, theres no harm with trying them surely?

Penfold007 Mon 11-Jan-16 15:00:13

My DH had it ten years ago and was critically ill and placed on an external pacemaker in ITU. He was in Kings College Hospital in London, the doctors didn't know a huge amount but they were willing to research and learn. They had to send his blood samples to Southampton Hospital as they are very good with Lymes Disease.

Our DS was bitten by a tick last summer and DH took him straight to Minor Injuries at St Marys in Roehampton. They were very knowledgeable and ensured all the tick had been removed and got antibiotics straight in to him. We were very impressed at how far things had come.

BijouxBibi Mon 11-Jan-16 15:29:39

That is for the messages..

Jelly , this is true. Lyme changes and waxes and wanes every four weeks. The lack of knowledge about it is breathtaking. We loved quickly I think .. Within about 6 weeks. For some reason I knew about Lyme ( God knows how! ) and when he started having all these symptoms that Drs couldn't explain I asked him if he'd had a PM unusual bite that he could recall and luckily he just said ' yes! A really u usual one that I noticed because it was black and shiny and like a lump. ' .. Of course he just bloody ignored it didn't he until one day he looked again and it was gone.

It's very clear when you look for it ... If you have had a tick bite and you have symptoms of Lyme it's vital to get antibiotics as soon as you possibly can

BijouxBibi Mon 11-Jan-16 15:30:53

Pen fold - that's good that they were so good with your son.

We live in a high risk tick area and my husband plays lots of golf on deer Heath land. Despite this, the doctor just said ' Lyme doesn't really exist ..'

Jellykat Mon 11-Jan-16 17:05:37

Absolutely Bijoux, my friend can go on a course of high strength antiBs, immediately testing negative afterwards, then it returns a month or two later, so they try to get it with a different course... My friend describes it as 'hiding'/ lying dormant during the negative tests. Of course, extensive use of antiBs depletes you're immune system, so it really is a juggling act.

It breaks my heart to see my friend during bad spells, she was such an active girl, now they're talking about fitting her with a pacemaker..All because it wasn't caught in time.

Best wishes to you and your DH, i really hope you sort it!

Sometimesithinkimbonkers Mon 11-Jan-16 17:16:14

Either way it needs investigating further.... My best wishes xx

Whatdoidohelp Mon 11-Jan-16 17:20:42

Often the tests the NHS use give false negatives. There is an excellent clinic in Germany that has an accurate test in sure. Could you contact them and ask for advice. They maybe can link you up with a private gp or hospital who may perform the test.

AnnaBanana11 Mon 11-Jan-16 17:31:01

Thanks all - I'm the op but I've changed my name.

Apologies for the bloody typos in my previous messages. Hope you got the gist

So sorry to read about your friend.. I have a great group I can tell you about full of highly knowledgable people if you think she'd be interested ..

Yes I'm aware of the testing in Germany. The NHS won't take these results seriously though and he can't go for it at the moment because it's just so crucial to move quickly with Lyme and start on the antibiotic treatment ASAP so he started taking doxy as soon as his NHS blood test was out the way. This, I believe, would obscure any result

John Caudwell is a passionate advocate for people suffering with Lyme as his family do and he said something interesting recently. In tests on people with Alzheimer's, ten out of the ten tested had Lyme bacteria in their system. Of course that's a very small test and probably means nothing but makes you think doesn't it?

AnnaBanana11 Mon 11-Jan-16 17:31:23

Oh and JC is the billionaire boss of Phones4U

SirVixofVixHall Mon 11-Jan-16 17:41:30

A friend's dd has Lyme disease. She did have the classic bull's eye rash that some people get, but no-one realised at the time what that meant, and she went some years before diagnosis. She is in her 20s and has lived through much of her teens with increasing illness, misdiagnosed as ME etc. At times she has been wheelchair bound. I agree that there must be thousands of people out there undiagnosed. The nymph ticks that are most likely to pass on the disease are minute, the size of this full stop. So most will never know they've been bitten. DH had a red bull's eye rash last year, and although he hadn't seen a tick, we have a dog, and live in a rural area. His GP gave him antibiotics immediately as a precautionary measure. I worry about Lyme, we walk through fields at times, there are sheep around here, and as I now know how easy it is to completely miss a tick bite, I think that awareness really needs to be raised. Go private if you can op. Can the association give you the name of a Lyme aware doctor? Good luck to your DH.

SnuffleGruntSnorter Mon 11-Jan-16 17:42:47

Ok. I understand you're frustrated. Despite your earlier insults this is actually an area I have some specialist knowledge of. I will put aside my frustrations at buying unknown medications over the Internet and the risks of unjudicious antibiotic usage.

So your husband had this tick bite and now has these unusual symptoms.

if he did not have the erythema migrans rash and has had negative Lyme serology then nice guidance is not to commence antibiotics but to investigate further either via referral to a specialist or to repeat serological testing. IF symptoms are consistent with Lyme disease.

Obviously I cannot comment on having not seen your husband. It seems the three doctors you've seen feel it is unlikely to account for your husbands symptoms which in itself makes testing inappropriate - clinical suspicion massively affects sensitivity and specificity of investigations.

you mentioned yourself there are lots of other illnesses with a similar presentation, you're sure it's none of those, fair enough.

Maybe you should seek a fourth opinion. Or maybe book a double consultation and ask to talk through the test results and your doctors reasoning.

Penfold007 Mon 11-Jan-16 18:02:30

We also live in a high risk area, there are far more than people realise.

SnuffleGruntSnorter Mon 11-Jan-16 18:34:49

If you mean the new forest, yes it's in every medical textbook with an infectious diseases chapter. Higher risk doesn't mean it's definitely what your husband has. I think you and your doctor both need to have an open-minded discussion. It's great joining support groups and things but watch it for confirmation bias.

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