It’s taken me a long time to write this post. I wanted to wait until a medical professional told me it was true, and even then it’s taken a while to put my head together enough to talk about it. In short: I have Lyme disease.
I was in shock for a long time. For the four years since I became ill again after a period of remission, I’ve been searching for answers beyond my ME and later my Fibromyalgia diagnosis. The majority of tests that have been done on me have come back negative or been blamed on my ME or Fibro, which means it just gets ignored. Most recently I spent months thinking I might have Sjögren’s Disease. My schirmer’s test, a test where they put a piece of paper in your eye to test tear production, showed I had basically zero tear production. My rheumatologist was shocked by how dry my eyes were. He also found low levels of inflammation in my blood and said it could be normal for me or it could be a sign of the Sjögren’s in action.
But then the bloods came back negative, and so did the lip biopsy, and suddenly my tear production was “probably at the lower end of normal” and my inflammation was blamed on my ME (even though my inflammation levels had always been normal up to this point and continued to stay raised in subsequent tests.)
I’ve technically been ill for 15 years. I was lucky enough to have a six year period of remission in the middle of that. But since I’ve become ill again it’s been a constant rollercoaster of searching for answers, thinking I’d found something, then finding myself back where I started. I’ve collected diagnoses: ME, Fibromyalgia, borderline POTs and hypermobility. Unfortunately none of those has led me to any kind of treatment except psychological ones and the advice to drink more water and eat more salt.
So when, for the first time, I read my test results and saw the word “positive”, my heart leaped. I sat in shock for hours, before breaking into tears over dinner. But now my emotions have settled down I can tell you my main feeling about it is this: hope.
Lyme is by no means easy to treat, or any better understood or respected by the medical community than ME. Let me be clear, I don’t think I don’t have ME, I think that, for me, the Lyme is the cause of my ME. I don’t think this is true of all ME patients, although I do think more people with ME should be being tested for Lyme. These are all just my opinions, unfortunately both illnesses need much more research. But I definitely have the classic symptom of ME: post Exertional malaise.
So why does it give me hope? Because it gives me a focus. If I know what I’m fighting I’ve got a better chance of beating it. Treatment is not easy or cheap to come by. The NHS testing and treatment for Lyme is extremely flawed (the same applies to most healthcare systems worldwide.) As far as they are concerned, if you test positive by their tests it’s a recent infection or a false positive. If you don’t test positive on their tests you don’t have it. You can’t have chronic Lyme, your body will fight it off, and a short course of antibiotics is all you’d ever need to treat it. Unfortunately, as many including myself have found out.. this is not the case.
I don’t have many answers for those in a similar position. After building up my knowledge of ME for years I feel a bit lost discovering I have a disease I know very little about. So, I’m going to answer some of the questions I can..but if you think you might have Lyme or want to find out a bit more about it, I would highly recommend this UK Lyme website, and their Facebook support group.
So here it goes, lets answer some questions…
Did you know you’d been bitten/ when you first got Lyme?
No. I didn’t see a tick. I didn’t have a rash. I have no idea when I was bitten and by what. I think I probably got it before the first time I got ill as a teenager and the stressful event of being hit by a car made my immune system vulnerable and the Lyme took advantage. The first time my immune system was, over time, able to fight it into remission. But when I got ill with a chest infection some years later, I wasn’t able to shake the symptoms. I got another virus, then suddenly one day became very ill again and this time, because of the viruses, I’m not able to fight it off.
What made you get tested?
I’m going to be honest here. I’d seen people in my ME Facebook support groups say you have to get tested for Lyme, and I thought, no way, I don’t have Lyme, I’m not even very outdoorsy.
But recently, I started to question it. A girl I am friends with on Facebook with ME found out she had Lyme, I had a comment on an old photo of me where my face went bright red that this happened to one of their friends and it turned out she had Lyme, and I started a drug called Low Dose Naltroxene which helps boost the immune system and I felt awful for three months. I tried higher and lower doses with no luck. I stuck it out at a pretty low dose for a long time and, while it helped my pain a bit, I couldn’t deal with feeling so ill. Then I read some information on what to try/look into if you were struggling with it as most people will feel worse temporarily on it and then start to see improvements (although very slowly for some). They don’t tend to just get stuck in the feeling awful phase. It said “have you been checked properly for Lyme.” And after all those things nagged in my mind for a bit, I got tested just to rule it out.
How do you get tested?
I’m just going to direct you to this information for this question: Lyme Disease UK’s testing information
So, that’s it, my official announcement: I have Lyme disease. It will, no doubt start cropping up a bit on my blog now and a bit more on my social media posts, but as I mostly post general stuff about chronic illness I don’t think the blog content will change too much. Please, if you think Lyme is a possibility for you, do join the group I mentioned and ask some questions. It is UK based, but I’m sure there must be similar groups for those elsewhere in the world.
Lots of Love,
Laura’s Pen
Hey Laura,
I have just come across your blog and I wish I had found it sooner!! I feel like I want all of your blog posts in a book that I can dish out to family to help them understand. Your comic strip is so accurate to my life I nearly cried reading it. Thank you for taking the time to create it and this blog.
In relation to the Lyme disease- can I ask did you get tested in the UK or by labs abroad? X
Thank you, that’s lovely!
I got mine done at Armin labs in Germany but a company called AONM deals with their uk stuff. There’s a link to them on the page I’ve linked to about testing X
Thanks for this will give it a read! X
Thanks for sharing your story. I had a similar story with a early diagnosis of ME…..good for you for checking for Lyme……not giving up is really the key to our success. We are fighters through and through!
Hi Laura
Found Laura’s pen absolutely fascinating as my daughter has been diagnosed with this disease!! because we live in South Africa, it is called Rickettsia ! I shall get her to chat with you.
How have you coped with the treatment?
Hi Debbie, haven’t started treatment yet so can’t tell you! Hoping to start soon though
HI Laura, I hate to say it, but welcome to the Lyme Club! My experience has been similar to yours as I also was diagnosed after years of searching (my catalyst was chronic EBV) with CFS and FMS. While exploring the CFS dx, I found a doctor who after seeing that I had been tested for just about every other auto-immune disease and dx with Hashimoto’s, but not checked for Lyme decided to test me. Bingo!
I had no rash but I began having weird symptoms about 7-8 years ago. I’ve been treating for 3+ years with some success. Please feel free to contact me anytime. I also run a blog about my personal journey with Lyme at http://www.readbetweenthelyme.com I hope it is ok that I reblogged this post over there.
Not everything is Lyme disease but Lyme is called the “great imitator” for a reason. I wish more people knew about Lyme and pursued ruling it out as a cause. But I had no idea myself. I just got very lucky that I picked a really good CFS doctor and she wanted to rule it out before moving on to treatment! Thank you for your post. It will help many! 🙂
I’ll definitely check out your blog and absolutely find that you reblog fed! It’s very odd going from an expert patient to knowing very little about your illness!
Totally agree. It’s almost like being diagnosed for the first time – again. Thninking of you, friend!
I laura I am a lymee too I did not know for 30 some odd years drudry ugh long sigh
thisis a great post and structure well wishing you well and blesings in all your endeavors
Hi Laura, would you mind if I shared your blog post on the LDUK Facebook page?
Hi Rachel, absolutely fine. Go ahead
Hi Laura. This is a great post. I think we all are in a bit of shock when we are diagnosed with Lyme. I have no recollection of a tick bite, but I was diagnosed last summer. I had a disseminated Lyme rash, and my blood tests came back positive on the first go round. Treatment is different for everyone, but you will have good days and bad days. Hang in there! Sending positive, healing thoughts your way.
-Suzanne
Thank you Laura for sharing your story. I hope more people become aware about Lyme Disease and more money is put towards educating the medical community. And most importantly I hope more money is put towards helping patients. All Lyme treatments (doctor visits, Rx, testing, supplements) have to be paid up front and then submitted to your insurance to MAYBE get part of it reimbursed. It’s nightmare to have to deal with the insurance especially when you’re so sick. I have a stack of “Super Bills” to mail in. I think they named them “Super Bills” because it’s all SUPER expensive. Best of luck Laura on your healing journey.
Thank you for sharing this. I have ME (as far as I know) but will check out the Lyme Disease info to be on the safe side after reading about your experience. We patients have often read more of the research about our illnesses than even the most understanding GPs will have done, so it’s crucial to share information like this. Thank you for doing so in such a thoughtful and measured way. Good luck with pursuing new information and possible treatments. Sam x
I have CFS/ME, Fibromyalgia and JHS. I’m not exactly sure when it all started but have had the diagnoses for around 4 or 5 years now. I remember having a couple of nasty viruses (flu and gastroenteritis) about 15 years ago and never quite feeling recovered. I just felt completely exhausted, like I was sleep walking in tar.
I was told I had burn out and then depression. I soldiered on and was pressured into taking antidepressants which really made things worse. It all came to a head in 2011 when I had a car accident. I was made redundant at the time and was too ill to get a new job so was forced to do nothing – just watch my life disappear. It was as if I’d been running on adrenaline for years and as soon as I stopped it all hit me. It is only now that I am beginning to figure out what happened.
I see an occupational therapist who specialises in ME/CFS every few months and on my first visit they tested for Lymes disease. It was done through my regular GP surgery – does this mean it isn’t an accurate result and I need to pay privately to get a test?
It concerns me because I was extremely outdoorsy as a child and remember coming across a lot of ticks in grass and on pets growing up.
Anyway you sound like you’re doing well and your blog is great. Very informative, well structured and easy to read.
Keep doing what you’re doing.
Jo.S
So sorry for the slow reply, it went into the spam filter for some reason! I don’t know a lot about the NHS test other than getting a negative doesn’t mean you don’t have Lyme as its not completely reliable. I think the link I posted to about testing has more info about the flaws in thr NHS testing and it explains the other options out there. The problem is that the NHS won’t accept the private tests that are most likely to pick up on it.
I’m assuming you didn’t have a bullseye rash at any point? Most people with Lyme don’t get this but if you did its diagnostic of Lyme on its own, regardless of what the test says. Although convincing your NHS doctors of this might be another matter!
Thanks for the reply I appreciate it.
I don’t remember a rash but I was a lively child and covered in scratches and rashes from being outside so often.
I will look into private tests. How is your treatment going? Hopefully it will lessen some of your symptoms. Good luck and thanks for your great blogs.
Thanks Laura for sharing your story as often this can lead others to considering Lyme as a possible diagnosis – I met many friends in the ME/CFS world who tested positive for lyme after reading my blog.
Good luck with your treatment, stand firm it is a marathon not a sprint and hope you can find a good Lyme doctor to direct your treatment
Hi, I am so glad that I found your blog! I have been sick for 18 years with fibromyalgia and CFS. This March, I finally learned that I have Lyme Disease. I was tested through Armin Labs in Germany. It has been such a shock to me to finally have an answer. Treatments for me have been a nightmare so far. I am trying to slow it down a bit. I have a pretty good Lyme doctor. But, I’ve been to the ER a lot due to severity of symptom flares from treatments. I blog over at lilacandlyme.blogspot.com. Wishing you best of luck with your treatment. Valerie
Thank you Lucy, I’ll check your blog. Sorry you’re having such a tough time. It’s still a bit weird getting my head round it. And people keep asking me questions I don’t really know the answers too! 😂