I have Lyme disease: my discovery after 15 years with ME/CFS and two with Fibromyalgia

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

" Laura Chamberlain : @lauras_pen Laura is a writer blogging about living with chronic illness, namely Lyme Disease, Myalgic Encephalomyelitis (ME/CFS) and Fibromylagia. She likes food, cats, bad jokes. Unfortunately, her boyfriend is allergic to the last two...."