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Could this be Lyme disease?

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 climbingpixie 05 Aug 2022

I've been feeling increasingly ropey the last couple of months. Started with intermittent mid-back pain when lying down but I'm now getting severe back pain that wakes me up at 3/4am every night, forcing me to get out of bed and stretch/pace/neck Ibuprofen for an hour or two until it subsides. Also back pain in the day if i sit still for too long. In addition I'm often nauseous and feel feverish when I'm in pain, though I don't have a temperature, plus starting to get the odd bout of diarrhea in the night (don't worry - I've always woken up!).

I spoke to the GP last week and am getting checked out for a couple of autoimmune/inflammatory things as I have psoriasis and family members with psoriatic arthritis (brother) and ankylosing spondylitis (cousin). A friend suggested it might be Lyme disease and I have had multiple occasions this year (and previously) where I've had ticks. No rash though and I'm pretty good about checking and removing them fairly quickly. I know various people on here have had Lyme - could these symptoms be Lyme? 

 mutt 05 Aug 2022
In reply to climbingpixie:

Where did your tick bites happen? Is it an area where lymes disease.

OP climbingpixie 05 Aug 2022
In reply to mutt:

I had a load at the start of June in NW Scotland (the Tollie Crag approach is teeming with them!). But have also had them in the Lakes and locally around Yorkshire. 

In reply to climbingpixie:

For what it's worth, I think you need an answer from a specialist.

From my own experiences, and from the experiences of others I know who've had Lymes, getting diagnosed has been really, really tricky and I don't think you're going to get the answer on here.

As proof of this, I got a tick bite last month which displayed atypical symptoms. I went to see a doctor shortly after who dismissed them, then went to see another a few days on who took it more seriously. It didn't have a bullseye, but did have a rash, and therefore ticked some of the boxes and not others. Thankfully the second doctor was far more familiar with Lymes than the first, so was far more aware of the issues, and that the fact that if it was Lymes it'd be pretty bad in the long run - hence prescribing a course of doxycycline. I'll never know if I actually had it, but I can at least be sure I won't as a result of the treatment.

Whilst I'm aware this is quite different to your case I would highly recommend seeing a doctor again. I would also recommend anyone who has a bite that's even vaguely suspicious not just to see their doctor, but encourage them to take it seriously. 

Apologies for taking your original post on a slight tangent. I've got all my fingers crossed for you.

OP climbingpixie 05 Aug 2022
In reply to Rob Greenwood - UKClimbing:

Thanks. I was in the surgery this morning for blood tests and mentioned the possibility to the nurse, who said it was a very good idea to get it checked out ASAP and that they've been seeing it more and more. So I've got a call with the GP this afternoon to raise the possibility, as well as to ask them if they can prescribe a more effective anti-inflammatory than standard ibuprofen in the hope I might actually be able to get a full night's sleep.

My docs seem pretty switched on about uncommon ailments (e.g. they were straight on it with the possibility of ankylosing spondylitis) but I'm aware that a Lyme diagnosis can be a bit of a nightmare, hence I'm trying to understand whether my symptoms align with those of others who've had it.

In reply to climbingpixie:

Really glad to hear your doctors are interested, open and engaged.

Hopefully there'll be someone out there on the Forums who can offer further advice on their own experiences.

 Doug 05 Aug 2022
In reply to Rob Greenwood - UKClimbing:

As far as I understand, the only reliable test for Lyme is a PCR test for the presence of the bacteria responsible, although in my case I suspect it picked up an old infection as where I now live has very few ticks. But after hearing that I used to live in the Scottish Highlands the doctor wanted to be sure - but this is France, maybe approches to Lyme are different here?

 Offwidth 05 Aug 2022
In reply to climbingpixie:

I hope things improve for you. I'd second Rob's advice as I've ve known people with similar symptoms who ended up with several different separate specialist diagnoses, including most recently long covid (which can disregulate all sorts of bodily functions).

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 dsh 05 Aug 2022
In reply to climbingpixie:

I've had confirmed Lyme twice and babesiosis which is another tick borne disease. Never had a rash. Get a test and don't let them tell you no. It's practically routine here. If you suspect Lyme and the doctors won't listen find one who will even if you have to go private. It's increasingly common in the UK but they don't take it seriously. Left untreated it can cause serious problems.

 Kemics 05 Aug 2022
In reply to Rob Greenwood - UKClimbing:

Given you were quite happy to almost die at home from a ruptured appendix, I would have hoped a GP wouldn't dismiss your concerns! 

To OP, you can get a blood test for lyme, would probably be worth considering. It's called the "Great imitator" as the symptoms are very varied person to person. 

 morpcat 05 Aug 2022
In reply to climbingpixie:

Here is guidance used by NHS doctors to determine the course of action for suspected Lyme: https://www.nhstaysideadtc.scot.nhs.uk/Antibiotic%20site/pdf%20docs/Lyme%20Disease.pdf

You have relevant tick exposure and at least some matching symptoms, so should be able to get tested to confirm. If positive you'll probably get 3 weeks of Doxycycline. 

I'm on the antibiotics myself, haven't had any problems with them except one side effect is that they make you more prone to sunburn. I already get sunburnt on rainy days in Scotland so I guess that means I'm now liable to spontaneously combust whenever I step outside.

 65 05 Aug 2022
In reply to climbingpixie:

Hi Pixie. I’ve had less than 5 ticks in my entire life but I made a hash of getting one out and the ‘bullseye’ rash appeared. I initially thought it was infected but then I started to develop odd symptoms; random trembling and palpitations being two I remember which alarmed me. This was c.20 years ago when the prevalence of Lymes was not given much credence by GPs in general. I had a couple of tests which came back negative but the symptoms were getting worse so I was escalated to a consultant who said Lymes case numbers were increasing, that the tests were not entirely reliable (I suspect they might be better now) and that he thought I had a good chance of having it so he put me on a strong dose of antibiotics. He also thought the symptoms might possibly have been a result of my caffeine/insomniac/relationship angst/work stress lifestyle at the time, but he didn’t want to dither about with potential Lymes, hence the antibios. The symptoms cleared up soon after, no lasting damage I can think of.

Fingers crossed for you that it is resolved quickly.

Post edited at 22:02
 Holdtickler 05 Aug 2022
In reply to climbingpixie:

I think Lyme can present in lots of different ways symptom-wise and there can be a lot of cross-over with other conditions like ME/CFS and Fibromyalgia, amongst many others. I'm also glad to hear you've found an interested GP as I've also had poor experiences finding one who knew anything about it, or apparently cared (in some cases). I'd second what others have said about being assertive and I'd even go so far as to say be prepared to "educate them" to a degree about the condition, or else find another who's had better training. If you've had a lot of bites it's wise to be cautious and be seeking profession advice (for what little it's worth, I'm no expert but your described symptoms don't have me convinced) I'd absolutely say don't wait for or even expect the rash. It doesn't always present, it's merely a tell-tale sign if it does. Chances of a good recovery improve with early treatment I believe as once it gets deep into your system it can be much harder to shift so don't hang about as Chronic Lyme is a life wrecker and not something to be trifled with.

There is some sort of higher level test, memory fails, Western Blot I think it was called. But getting one of those done can require tracking down and getting referred to a rare specialist and a lot of pestering. They told there was something like a 20% false negative rate though and refused a retest so I still couldn't really rule it out for sure.

There are private tests that you can have sent over to a lab in Augsberg, Germany which will also test you for all kinds of other co-infections that go along with Lyme. The problem is that you'll be very lucky to find an NHS doctor who will even read the results let alone discuss them with you regardless of what they show so again this can leave you none the wiser, at least that was very much my experience.

My info may be a few years out of date however so things may have changed and developed in the diagnosis and treatment so I'd advise continuing your own research.

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OP climbingpixie 06 Aug 2022
In reply to Holdtickler:

> I'm also glad to hear you've found an interested GP as I've also had poor experiences finding one who knew anything about it, or apparently cared (in some cases).

I may have spoken too soon. My consultation was with a different GP and she seemed pretty convinced it wasn't Lymes because my pain was localised to my back and I hadn't had the rash. However, she seemed to think that my blood tests (though not for lyme) would flag up if there was anything weird going on that needed more investigation. On the plus side, she did prescribe me some stronger anti-inflammatories (500mg naproxen) and I slept all night for the first time in 3 weeks! Stiff as owt this morning but worth it for a decent night's kip.

Will see what my initial blood results say and how I'm feeling on the new drug and seek a second opinion if need be. It's a shame that private testing isn't more widely available, I'd be happy to pay to get checked out but there's no point if the docs won't believe it.

 Holdtickler 06 Aug 2022
In reply to climbingpixie:

You may find private practitioners who will consider and discuss results from private tests however. The Optimum Health Clinic for example.

1
In reply to climbingpixie:

Although not this condition my wife had pyrexia if unknown origin (unexplained fever) mystery inflammatory condition, completely atypical of anything for 3 years and was very sick indeed. All the various docs, and there was a revolving door or them, said was "it's not a typical presentation of one of my specialist conditions, so I'm discharging you". No diagnosis or any treatment for years of debilitating illness.

Fortunately there *is* private testing available, you need a private GP appointment and the GP might refer you for tests and referral to a specialist (obviously depending on test results). As a self funded patient this isn't cheap!! In my wife's case we say the top person in what we and the private GP suspected might be the case and he immediately diagnosed it and he was certain (with very clear evidence from test results and the pattern of the last few years) and started treatment - which has been an absolute blessing!

Private testing for anything and everything *is* available, if you have the cash

 Jenny C 06 Aug 2022
In reply to climbingpixie:

I know I'm not alone on here in suffering from long covid - 18 months and still counting:  Chronic fatigue, difficulty sleeping, breathlessness, tingling in hands, dizziness, poor memory and attention span (brain fog), irritability, depression, anxiety, bone and muscle aches, loss of hair, loss of appetite, loss of taste.

Many of these are the same symptoms as for chronic Lyme Disease and I'm now clutching at straws for other potential causes of why I'm still feeling so rubbish. 

I've never knowingly been bitten by a tick, but my parents are keen hill walkers, so I've been out in The Peak since before I could walk and back in the 80s/90s when sheep populations were far higher nobody thought to check for them after a day out.

Post edited at 13:31
 Holdtickler 09:31 Sun
In reply to silent dislikers

This isn't a bun fight thread. It's thread aimed at seeking and sharing information which could help people. If you disagree with any advice given by someone or know better then use your words and share it and it might just help someone...

Silent disliking on a thread like this isn't just pointless and unhelpful, its a bit creepy tbh!


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