Justin Bieber’s Diagnosis: The Lowdown On Lyme

Two words I never thought I’d write here. Justin Bieber. 2020 is just full of surprises. The 25 year old Canadian pop star has hit the headlines recently after his Lyme disease diagnosis. Following ample speculation and judgement from the press, rumours ran from drink and drugs to a heavy party lifestyle that had him looking pale and poorly, with blemish-prone skin and unpredictable behaviour. 

Justin Bieber announced on his own Instagram page about some of the challenges he has faced, saying that he was suffering from Lyme disease and a “serious case of chronic mono which affected my skin, brain function, energy and overall health”. 

Lyme disease is a tricky one. Symptoms can overlap with a variety of conditions and diagnosis isn’t straightforward. While the stats suggest 13% in the UK may be infected, I’d estimate the figure may be greater if testing were more accurate and readily available. 

There are a lot of myths and misconceptions around the Lyme. Let’s take a quick look at what it’s all about. 

What Is Lyme Disease?

Lyme disease (aka Lyme Borreliosis) is a type of bacterial infection. It’s caused by Borrelia bacterium and is spread by infected ticks. 

While some people report knowing when and where they were bitten by a tick, others are none the wiser. It’s also worth noting that the majority of tick bites are harmless. A small number of ticks will carry the bacteria that can infect a human with Lyme disease. They get the bacteria from feeding on mammals or birds that have the bacterium in their bloodstream. 

Ticks can be found in many countries, including the UK and particularly in woodlands and grassy areas. You may feel the bite and be aware of it so you can safely remove the tick, but it’s not always felt. It’s important to check your skin after being outdoors and to know the signs and symptoms of Lyme, just in case. 

Symptoms of Lyme

The most prolific symptom is the ‘bull’s eye’ rash soon after being bitten. It’s so called as it looks like a bull’s eye on a dartboard, typically seen as a circular red rash that can appear within the first three months of the bite. It can expand in size to around 12 inches in diameter, appearing anywhere on the body. It’s ironic that it’s representative of Lyme disease when a great number of those diagnosed with Lyme don’t experience it. 

Early symptoms can be somewhat suggestive of a flu, and can include : 

  • The ‘Bullseye rash’
  • Swollen lymph nodes
  • Fever / high temperature and chills
  • Headaches
  • Joint and muscle pain
  • Fatigue 

Over time, the condition can progress with symptoms like : 

  • Rashes on other parts of the body
  • Joint pain and swelling, arthritis
  • Numbness or shooting pains, tinging in the feet or hands 
  • Irregular heartbeat / heart palpitations
  • Neck stiffness
  • Inflammation of the tissues covering the spinal cord and brain 
  • The above inflammation can lead to facial palsy
  • Heart and liver problems
  • Significant headaches 
  • Vertigo
  • Mental confusion
  • Sleep disturbances 

Testing For Lyme

Lyme is a mysterious one that has no conclusive, definitive test that’s totally accurate for diagnosis. Furthermore, standard tests can’t separate a past disease from an active form. This basically means patients can get false negatives, with underdeveloped antibodies not showing on the test to suggest Lyme infection, or false positives, with antibodies lingering in asymptomatic individuals who’ve already been treated, replicating an active disease. 

On the NHS, many patients presenting with unexplained symptoms aren’t unable to get tested; as is common with ‘invisible illnesses’, some may feel they’re being fobbed off by doctors or find that the disease completely overlooked as a possibility. When it is tested for, the test is often less effective in the early stages. When limited to an initial test that may provide a false negative, patients are left between a rock and a hard place, unable to get any further without going elsewhere for testing. 

There are usually two stages employed to testing in the UK. The first is for ELISA, or EIA, screening. Only if this test is positive does the screening procedure usually progress on to stage two. This second part involves a laboratory undertaking an immunoblot test to pick out any false positive ELISA results and confirm the presence of Lyme. 

These tests don’t always get it right, but there’s been no research to suggest how effective they are or how often they get it wrong. There are a few possible reasons for inaccurate negative results, often linked to the development of antibodies and variations to the autoimmune response. In the case of false positives, these are often found in those with other conditions like rheumatoid arthritis and glandular fever. In the case of false negatives, levels may fluctuate or the antibiodies may be underdeveloped. For this reason, it’s common for doctors or patients to request and require more than one ELISA test. 

The irony here is that in the first few weeks, tests may not pick up on Lyme as antibodies haven’t had enough time to develop, and yet the earlier Lyme is detected and treated, the better. 

In the UK, Medichecks offer the ELISA test, checking for both Borrelia burgdorferi IgM and Borrelia Burgdorferi IgG. Results are interpreted by a doctor and reported on the users online account for to be viewed, saved or printed off, offering patients an alternative to NHS testing that they can do from home (more information on this later). 

There are additional tests that can be undertaken, including the likes of cerebrospinal fluid samples to check antibodies for Borrelia, microscopy and focus floating microscopy, cultures, and polymerase chain reaction studies. 

The big problem for many is getting that first test, the ELISA screening, yet it is so vitally important. Sometimes patients may want it repeated but are refused by their doctors. I’ve also known GPs request tests that the lab have simply refused to undertake, undermining their authority. In my opinion, a mixture of scepticism, ignorance, red tape and budget cuts get in the way between patients and diagnosis. As many of us know all too well, when conditions are ‘invisible’ and symptoms can’t necessarily be seen, it can be hard to be believed, let alone taken seriously. 

Treatment 

The earlier it’s diagnosed and treated the better as antibiotics are commonly used for the early stages with a 90% success rate. For example, Amoxicillin may be used for 3 weeks, or Doxycycline for 10 days up to 3 weeks. With early disseminated Lyme, when symptoms have started to progress as time goes on, antibiotics are usually either oral or IV depending on the situation. Treatment for Lyme in the later stages is often with IV antibiotics and additional therapies for other symptoms, such as pain relief or joint medications for those who may develop joint issues and arthritis. 

Unfortunately, it’s thought that around 10% of those treated continue to experience symptoms, including the likes of mental confusion or memory loss, fatigue and muscle/joint pain, referred to as Post-Treatment Lyme Disease Syndrome.

What Can You Do? 

There are a few things you can do to help prevent Lyme or to help in your journey with testing if you’re concerned about a possible infection.

Prevention

Prevention is one aspect. For example, long sleeves, trousers and socks when you’re outdoors and in woodlands, tick repellant for your skin with eucalyptus / DEET / lemon oil, shower after coming indoors, check your skin, wash and use a hot dryer for your clothes after being in grassy/wooded areas.

Home Blood Testing

Consider home blood testing. Private hospitals are an alternative to NHS GPs but you may be paying a small fortune to see someone and get tested. A home blood test is a convenient, quick and far more cost-effective way of doing it. 

Medichecks in the UK have the ELISA test that you can do yourself, or via a local partner clinic, and you can see your results from the comfort of your sofa on your online account. If this comes back positive, you can show the results to your GP or specialist. Medichecks are a popular and preferred provider of home blood tests so your healthcare provider should, in theory, accept the results and act on them as though they were undertaken on the NHS. You’ll likely find they will be glad they haven’t had to do the test themselves and that you’ve saved the NHS money by having it done yourself. 

You can use this link & the code INVISME10 for 10% off your order. For more information about their service, check out my review. For those in other countries, it may be worth seeing whether similar is available in your area. 

Educate & Persevere 

Make a list of any symptoms, including how long you’ve experienced them for. Note any travel, or any instances where you think a tick bite may have happened (if you feel you’re aware of it happening). Present this to your doctor. 

If you’re concerned about Lyme, educate yourself and don’t give up. If you’ve been through the mill with tests, acknowledge that it’s possible you may be experiencing another condition that shares symptoms with this disease, but having it ruled out to the best extent possible is important. You know your body. If something isn’t right, remember that your health is worth fighting for.

Have you ever had any experience with Lyme disease? How did you find the process of diagnosis? 

Caz  ♥

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56 Comments

  1. January 14, 2020 / 5:12 pm

    We have it. The initial infection was awful.

    • January 15, 2020 / 5:32 pm

      Oh no, I’m so sorry you’ve got it 😢 Did you get the rash, and are you getting antibiotic treatment now? I really do hope the treatment can help xx

  2. January 14, 2020 / 5:30 pm

    This is a first for me. I never thought I’d like a post with Justin Bieber in it. Wonders never cease. I did like the informative information on Lyme disease. The risk is low for me living in a big city, but its good to know what to look for just in case. That bulls-eye rash is scary looking.

    Good looking out Caz. Thank You.

    • January 15, 2020 / 5:35 pm

      I’m glad it’s not just me that’s been surprised by this turn of events, me having written about him & you having liked it 😂 The rash is very distinctive and it can sometimes affect quite a large area, but it doesn’t always happen. I think that’s a big part of the problem with diagnosis because even a lot of doctors need there to be something to see, not a bunch of invisible symptoms they can easily ignore. Thanks for the comment, Darnell! x

  3. January 14, 2020 / 5:41 pm

    I learn so much here. I’ve never had any experience with this disease.

    Have a fabulous day, my friend. Big hug. ♥

    • January 15, 2020 / 5:41 pm

      I’m glad you’ve been able to learn something new from this post, that’s wonderful. I’m glad you’ve not had any experience with Lyme – hope it stays that way! Have a great week, Sandee xx

  4. January 14, 2020 / 5:48 pm

    Great post Caz with very wise advice.
    Living in the wilds of North Wales we do have ticks as very close neighbours. When we first moved here we lost count of the little critters that latched on to both of us. We now have a ‘tick kit’ and check each other when we’ve been outside. Not sure? then it’s the high power magnifier with led lights. Find one? out comes the tick ‘lasso’ which is incredible for getting them out intact. Any mouth part left in may cause infection. Fortunately ticks in NW aren’t known to carry Lyme but we live in sheep country so we’re not taking chances.
    Our daughter-in-law lost a lot of schooling and was diagnosed with ME. Even 20 years later she would periodically be overcome with exhaustion. Chatting with her a few years ago about ticks she told me when she was about 15 she was bitten by ticks when holidaying in the New Forest. Alarm bells rang. I don’t know if tests could be done, or be any use at this late stage but no-one was really interested in my ‘theory’.
    As you say, knowledge is key. Prevention, protection, vigilance.
    Maz XX

    • January 16, 2020 / 12:04 pm

      Sounds like you need to be prepared where you are, so it’s great you’re aware of it already and have a ‘tick kit’ with checks after you’ve been outside. Very wise because you can never be too sure. I’m so sorry about your daughter-in-law, Maz. Sounds like, if any of those bites did lead to Lyme, that it was a long time ago so I’m not sure how the level of antibodies would look now, though one would like to hope it would be detectable on an ELISA test. I’ve read stories of people that had symptoms from 20 odd years ago and then were recently diagnosed with Lyme, so it is possible, it’s just that frustrating thing of not having definitive and totally reliable results from the current tests available. Has she ever looked into getting tested? Personally – and I’m not a doctor, of course, so I’m just thinking ‘if I were her’ – I’d want to get tested, even if just for peace of mind that I’ve tried it. xx

  5. January 14, 2020 / 6:09 pm

    Fabulous post. It is so important that you get a diagnosis as soon as possible. Keeping out of long grass is a safe bet too. We keep our crass cut all the time now as the dogs bring back horrendous numbers of ticks otherwise.

    • January 16, 2020 / 12:14 pm

      Oh yikes, very good point about long grass and animals bringing in ticks. Glad you liked the post – I think it’s a topic that it’s good to be more aware of. Thanks for the comment! x

  6. January 14, 2020 / 6:18 pm

    The first I heard of it was when someone said ‘Don’t go in the New Forest in shorts and sandals!’ We heard a radio phone in with an older woman in tears describing how her life had been wrecked by it. A very helpful article.

    • January 16, 2020 / 12:21 pm

      I bet the New Forest is probably a haven for little tick monsters. That poor lady, Lyme really does seem to have a pretty destructive impact on a lot of those infected with it. Thanks for the comment, Janet. x

  7. January 14, 2020 / 6:49 pm

    I only know of this disease as I was tested for it while they were trying to find out what was wrong with me in 2011 when I couldn’t walk and had no sensation from just under my arms down to my toes. As a nurse, I obviously researched this disease and the fact that it was caused by a tick made me feel sick – I’m really queasy.

    I was shocked to find that around 8% of the UK population had been diagnosed (some now treated with anti-biotics) with Lymes and as you said Caz, it could possibly be 3 times this. It turns out I had Transverse Myelitis which has similar symptoms.

    Caz x

    • January 16, 2020 / 12:41 pm

      What you started to experience must have been so scary, and pretty out of the blue I imagine, too. As you obviously already know, it’s tricky when symptoms of different conditions overlap but I’m glad you were tested because you don’t know otherwise. It’s pretty shocking to think so many people could be struggling without any diagnosis or treatment at all, or diagnosed incorrectly with something like ME/CFS, arthritis or fibromyalgia because of similarities in symptoms. Given that antibiotics do seem to have a reasonably good success rate, it’s awful so many probably aren’t getting the treatment needed. Thank you so much for sharing some of your story, Caz. xx

  8. January 14, 2020 / 7:11 pm

    Useful info – especially the Medichecks link. We take our dogs for off-lead walks every day, either in forest or alongside fields, and we’re both of an age when these symptoms are likely to crop up for so many other reasons. Getting an appointment at our local GP involves repeated phone calls until I no longer get the ‘engaged’ tone and then hanging on from being 14th in the queue to being answered. A credible test result would make the eventual phone call much more productive.

    • January 16, 2020 / 1:10 pm

      Sounds like being mindful of ticks is a good idea, Cathy. I know what you mean about those GP appointments. The times I’ve hung up after hearing I’m number 10 in the queue.. what really pees me off is how it seems all practices have introduced this lengthy ‘welcome’ message (getting you to stay on the line and costing you money), after which you’re put on hold, all the while sucking your mobile credit or adding to your landline bill. Do you have an online account where you can make appointments? It does seem the ones for my practice are very limited online so you’re more likely to get something on the phone, but it’s just a thought if/when you next need an appt. xx

  9. January 14, 2020 / 9:02 pm

    Great info.

    Poor guy.

    • January 16, 2020 / 1:12 pm

      It’s pretty sad to have all of this aired in the media where he’s open to so much judgement, so I hope those that so lavishly lambasted him feel at least a bit bad for it now knowing his health challenges. Thanks for the comment, Bo. I hope you’re keeping as well as possible..  ♥ xx

  10. January 15, 2020 / 1:46 am

    great important info – lyme disease I’ve heard is horrible as well as can linger

    • January 16, 2020 / 1:16 pm

      It certainly can have a big impact on life and as you say, it can hang around with lasting effects sometimes. Glad you liked the post – thanks for the comment, da-AL! xx

  11. January 15, 2020 / 3:31 pm

    The Biebs! I hadn’t heard… or maybe I forgot? This was very informative, Caz. I did not realize there were treatment options with a 90% success rate! I’ve been tested for Lyme more times than I can count! Fibro is often thought to be Lyme in its onset do to the extreme fatigue. Great list of symptoms as well as preventative steps. Home testing… I wonder what home tests are available in the US? I have some researching to do! 😉

    • January 16, 2020 / 1:39 pm

      I did try to check out home testing in the US but I get a bit confused because of healthcare and insurance and such so I’m not really sure what’s what! I hope there are options, one would assume so. You’re right about those converging symptoms and it does make you wonder how many have been diagnosed with the likes of fibro or ME/CFS incorrectly. Thanks for the comment, Kimmykimkim. xx

      • January 31, 2020 / 3:08 pm

        Too funny Caazzy CAZ Caz Cazorino! 😆

  12. January 15, 2020 / 6:55 pm

    That’s good information, Caz! And I agree that it helps raise understanding of chronic diseases when famous people speak out about having them. I’m pretty sure Amy Tan also suffers from Lyme Disease, but I could be wrong.

    • January 16, 2020 / 2:07 pm

      You’re right – Mr Google says she’s been struggling with neurological Lyme disease that even the best docs in their field found challenging to diagnose. I’m not really one for celebrity culture but I do think it can help at times with mental and physical health issues to bring about more awareness. Thanks for the comment lovely xx

  13. January 15, 2020 / 10:33 pm

    I’m from the Deep South (Charleston, South Carolina, US) so I know the dangers of ticks well, but I always thought if you got Lyme disease you always had symptoms forever, I didn’t know there was a possibility of recovery after treatment, that’s good news. However, I also thought there was a more accurate test for it, makes you uneasy when you are told you don’t have it because the test said so.
    I hate to hear anyone has to suffer with this, but at least Justin Bieber’s diagnosis got us talking about it. Who would have thought we would talk about him! LOL

    • January 16, 2020 / 2:17 pm

      My thoughts exactly, Wendy – never thought I’d be mentioning Bieber on here! It’s good you’re already aware but you’re right about the testing, it’s rather off-putting to think of the greater possibility of false negatives and the difficulty in getting additional tests like the immunoblot to confirm any presence of the disease. It seems that for some the antibiotics can work quite well but there are sadly a proportion of those for whom symptoms continue to linger. Thanks for the comment lovely – I hope the week is treating you kindly ♥

  14. January 16, 2020 / 4:03 am

    I’m always terrified of getting bit by a tick now. When I was little I’d run through the woods without thinking about ticks, but now they scare me. Thank you for sharing this information!!

    • January 16, 2020 / 2:19 pm

      Aw I don’t want to scare you further, Michelle! Not my intention – I probably should say it’s dangerous to not be aware of ticks and Lyme, but it’s also potentially anxiety-provoking to be ‘too’ aware. The good thing is to be prepared, try to prevent as much as possible, and to know there are antibiotics that can treat it in a good deal of cases. Thanks for the comment lovely xx

  15. January 16, 2020 / 3:28 pm

    I’d never even heard of lyme disease – thanks for putting together the facts for us 🙂

    • January 18, 2020 / 4:38 pm

      I’m glad this post could help you learn something new, Kirsty. That’s fab! Thanks for the comment – I hope you’re having a good weekend so far 😊 xx

  16. January 16, 2020 / 8:19 pm

    I know of people who have trigeminal neuralgia which they believe to be caused by lyme. As you said, it’s one of those conditions which gets overlooked and if a person wasn’t aware of getting a tick bite, they wouldn’t think about it.

    My husband has had a few tick bites. He did get the bulls eye once, and went straight to the doctor. The doctor had no idea about it and was grateful that Ian knew about it himself.

    • January 18, 2020 / 4:41 pm

      Thanks for the comment, Liz. That’s an interesting point, to have a condition like TN triggered possibly by it. Oh wow, a doctor that didn’t know anything about Lyme? I actually find that quite worrying! I’m glad Ian knew enough about it to head straight there & let the doc know what’s what. I often think all we would need is access to tests and medications and we could be our own doctors better than some of the ‘real’ ones! How did he get on after that, if you don’t mind me asking? xx

      • January 19, 2020 / 3:32 pm

        We live out in the country, the doctor was a townie lol. Not used to countryside issues, he said. But, it showed that it’s not something they consider.
        Ian was given antibiotics, I think. It cleared up and he was fine.
        The bite was on the front of his body. Had it been on the back, he’d not have noticed. You don’t feel those ticks which is probably which means they often get missed.
        I agree, if we could organise our own tests and meds, I’m sure we’d all do better.

  17. January 16, 2020 / 10:17 pm

    What an outstanding and informative post Caz! So many people have lived with Lyme disease for years because, as you said, so many of the symptoms overlap with other conditions. Thanks for sharing this information!

    • January 18, 2020 / 4:43 pm

      Aw thank you, Terri. It’s great you found the post to be informative, I hope it can make others a little more aware of the condition, what to look for, the problems with testing etc. I think it’s all the more important when it’s a condition that seems to go very under-diagnosed and the symptom overlap just makes things all the more complex. Thank you for the lovely comment. I hope you’re able to have a chilled out weekend  ♥ xx

  18. January 17, 2020 / 1:49 pm

    It’s so important to highlight these diseases that so often go undiagnosed. Lyme disease is awful and yet it’s another chronic condition so many people struggle with. I think Avril Lavigne also has it, I think that’s why she took such a long hiatus from music. Great post, and informative as always! x

    • January 18, 2020 / 4:56 pm

      You’re absolutely right about it being an important one, and yes, Avril Lavigne has/had it. I’d forgotten about that! Glad you liked the post – thanks for the great comment! xx

  19. January 19, 2020 / 7:09 pm

    What an awful thing to experience, Caz; so debilitating!
    This was an extremely good read; we really can’t have too much knowledge about those things that can potentially cause harm; for ourselves and others. You just never know when this kind of information can prove effective!
    xoxoxo

    • January 20, 2020 / 5:42 pm

      It really must be, so many people have it though and it’s scary to think who may have it without realising the cause of their symptoms. I’m glad you found the post to be interesting – thank you for a wonderful comment, Carolyn. xx

  20. January 19, 2020 / 8:41 pm

    Lulu: “We have a blog friend who had Lyme Disease! She got treated but continued to have symptoms for years afterwards. She used to write about it a lot but has finally been feeling better the last few months, so that’s good.”

    • January 20, 2020 / 5:44 pm

      Oh no, your poor blog friend. Sounds like she was in the estimated 10% of people who experience symptoms even after treatment, which must be so frustrating. It’s brilliant to hear she’s been feeling a bit better lately though, I hope things continue to improve for her! xx

  21. Susan Scott
    January 20, 2020 / 7:22 am

    Excellent post – very informative. I’ve got a couple of friends who’ve had Lymes who say it was just the worst and lasted for several months in spite of treatment. Thanks for this 🌺

    • January 20, 2020 / 5:46 pm

      I’m sorry for your friends who’ve dealt with Lyme disease, Susan. Must be awful and then to continue to be symptomatic after treatment… that I can imagine being frustrating and pretty disheartening. I hope they’re doing a little better now. Thank you for the comment  ♥
      xx

  22. January 20, 2020 / 2:08 pm

    I had no idea what this was nor have I ever heard of it! I’ll certainly keep my eyes open after reading this.
    Thank you for sharing and educating me. It’s true what they say; You learn something new everyday.

    • January 20, 2020 / 5:51 pm

      I’m so glad this could help you learn about something new! That’s exactly what I’d hoped to do, just to bring some awareness to it. Thanks, Nyxie! xx

  23. January 22, 2020 / 5:09 am

    Everyone always thinks that celebrities are somehow different than we are, but not. Remember Annette Funicelo on TV I think in the 50’s or 60’s? Didn’t she get MS? And lots of others have had some dreadful things. It is too bad that the first thing people think of is drugs or something like AIDS. Thank you for the good post. You have showed that we are all human.

    • January 29, 2020 / 9:58 am

      Oh absolutely, Anne. We’re all human, we’re all vulnerable and susceptible to all sorts of illnesses and diseases and disabilities. Sometimes that stardom can just help bring light to an issue and raise awareness for it an a way that us ‘regular folk’ can’t. Thank you for your comment! x

  24. January 24, 2020 / 2:51 am

    Very informative! I know a couple of people that have lyme, but learned a lot here.

    I’m not a fan of the Biebs, but lyme is a tough diagnosis. Feel bad for the kid.

    • January 29, 2020 / 10:06 am

      I’m not a Bieber fan either, but it’s good the news has been able to raise a little more awareness of Lyme, especially for those who hadn’t heard of it before. I hope those you know with it have been able to get adequate treatment. Thanks for the comment, Linds  ♥ xx

  25. January 24, 2020 / 4:08 am

    I was so shocked when he mentioned this! I think it is so important for the lyme community that more people are talking about it now! Thankyou for raising more awareness <3 Lots of love

    • January 29, 2020 / 10:08 am

      I totally agree, it’s great it’s been able to open up the conversations on Lyme, though obviously sad that he’s had to experience it as so many people sadly do. Thank you for the comment, Susie! I hope you’re having a good week so far.xx

    • January 29, 2020 / 10:24 am

      You’re welcome – thanks for reading & the comment, Bette! xx

  26. January 27, 2020 / 9:01 pm

    I’ve missed so many great posts while I’ve been away, Caz! I especially love this one and all the great information you’ve packed in it. Lyme is a very tricky condition to diagnose and treat. Lyme disease often causes MCAS, so of course I’ve been tested more than once, but you really can get a lot of push back from ignorant doctors. Thanks for this great information. I’ll be sure to share it!

    • January 29, 2020 / 10:27 am

      Welcome back! I’m glad you liked it, Mykie. It’s a good one to raise awareness of but it’s so, so frustrating knowing how many struggle to get the tests and support they need from, as you’ve well put, ‘ignorant doctors’. Thanks for the great comment! 😊 xx

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