My Story: Lynsey Toner

​"Hello? Yes I'd like a refund on my body. It's kinda defective and really expensive!" 

Hello there, thanks for coming to read my story of ups and downs through a crazy invisible illness. After 15 months of torture, I have finally received a diagnosis that is supported with an actual blood report and not just on some ‘expert’ opinion on my condition. Pity we had to go all the way to Germany to get it though!

After a ridiculous amount of expert opinions, clear blood work, hospital stays etc etc, I began trying to come to terms with the diagnosis of Fibromyalgia. (or Fibromagillia is what we referred to it as, thanks for all the donations in Tesco Helen :L) Finding it hard to do this and with all the controversy around Lyme Disease and it’s misdiagnosis here in Ireland and England, myself and family decided to send my blood off to Germany to get reliable and accurate blood tests done for Lyme Disease and it’s Co-Infections. It turns out that I have 3 bacterial Co-Infections of Lyme and 1 viral infection. The main one causing most of my problems is called Ehrlicia/Anaplasma and is contracted through the bite of an infected tick. (Don’t ever remember getting bit by one of the sneaky little feckers!)

I never thought I would EVER be so delighted to have a chronic illness in my life! It sounds bad, but after being ‘invisibly’ sick for so long and then being told I had fibromyalgia (possibly for the rest of my life) which I had to manage myself with diet, exercise, sleep (& debilitating medication that I refused to take as had bad experiences with the likes before), which is hard to do when in pain all the time and extremely tired and dizzy etc. I felt that at least a diagnosis of Lyme and/or the Co-Infections gives me hope of some actual treatment for curing and eradicating this potentially deadly bacteria from my system and hopefully move on with my life. I am only 25 for God’s sake and I feel like I'm in the body of a 90 year old woman. Hopefully I will be going to Germany soon for treatment so fingers are crossed that I hear from the hospital soon. With NO help from this disgraceful joke that we call a health system here in Ireland. I am actually terrified of it now. But more on that later……

I would like to say a massive thank you to my family. My two sisters and bro-in-law’s who always try to take my mind of things and keep me happy, My niece and nephew who’s cuddles can cure any awful feelings, My brother who always cheers me up with his crazy comments, example (“I have something called Ehrlicia”, “Eureka more like…”) Especially my parents for everything over the last 15 months. Well for everything my whole life but let’s keep it recent or this will no longer be the short story!(kinda turned into a long enough one) (“,) All the support, the worrying and stress, expense and time off work for doctors appointments and treatments, all the alternative treatment appointments (there was a few mad ‘oul therapies along the way) and all the cuddles and everything else in between, thank you so much. I am a very lucky chronically ill girl… but not for long, thanks to you guys. Also my wee handful of lovely friends, there may not be many of you but your a great wee bunch. Thanks for listening to the complaining and cancelling of plans and excuses, making me do stuff anyway and just plain being there really. And last but not least my amazing boyfriend of 9 years, Anthony. You are a saint to put up with all this illness stuff and not a complaint, nothing but support, care, love and understanding. I love you very much. Let’s get rid of this stupid bacteria and start our lives together (“,)

Bring it on you *!!@*! Bacteria. Roll on Germany!

Oh and just one more thing. Thank you to all the people who have talked about their stories online and who have made themselves available to me for advise and support. If not for you, I would still be battling with Fibromyalgia, ignoring my doubts and never questioning it because “the specialist told me so”. That is why I would like to share my story also. 

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Lynsey Toner is a Lyme survivor living in Ireland and receiving treatment in Germany. Her Lyme website is called Longing For Lyme. I encourage you to check it out and she would be more than happy to speak with you about her experiences with Lyme and serve as a supportive ear during treatment, whether you are a survivor, caregiver or someone who loves someone with Lyme.