The worst diagnosis of all

A couple of years ago I bought a book called ‘Why can’t I get better’, by Richard Horowitz, and it was all about Lyme Disease. I remember reading it at the time and thinking wow, so much of this sounds familiar. I did some research and quickly discovered that Lyme disease, in its chronic form, is extremely controversial. The NHS in the UK (and the CDC in the US) do not accept that Lyme disease exists as a chronic condition, and the vast majority of doctors work to this effect. In addition, the test that is used in the NHS and in many healthcare services worldwide has notoriously bad sensitivity, meaning it produces a lot of false negatives. There are calls, by researchers and clinicians worldwide, for a new approach to Lyme disease [1 – this is an academic paper, but is only 1 page long and very readable, so I highly encourage everyone to read it!*(see footnote)].

At the time when I read this book, I quickly dismissed the possibility of Lyme disease based entirely on this controversy. Partly I think it was because I thought to myself (naively, I now recognise) that if the NHS doesn’t treat it, it can’t be a real thing. It must be a conspiracy theory and I don’t want to waste my money or time looking into that. And partly I think it was that I just didn’t want the hassle of thinking about something so complex, so put it to the back of my mind.

Fast forward to last month. I had a severe throat infection and after a visit to my GP was prescribed a 10 day course of antibiotics. A few days into the antibiotics, not only had my throat infection cleared, but I felt on top of the world! All of my EBV symptoms completely disappeared. For the first time in years the glands in my neck went down to a normal size. I had so much energy, no sore throat, no headache, no achey joints or muscles, no fever….it was incredible. There’s a funny thing that happens when you are chronically sick. Your level of ‘normal’ changes. You somehow get used to feeling shit all the time. Sometimes you feel a bit shit, sometimes you feel really shit. But always shit. You forget what it’s like to not feel shit and adjust to going about your daily routine feeling this way. Sometimes you even start to question whether you do in fact feel shit – is this just how people feel? Am I just a hypochondriac, or overly sensitive? Chronic illness really messes with your head. So this period of wellness when I was taking the antibiotics last month was like a light had been switched on. “Oh yes, THIS is how it feels to be well!”

Alas, my excitement was short-lived. A few days after the course of antibiotics ended, I came crashing back down to chronic illness earth. All of my EBV symptoms returned and I went back to feeling…. you guessed it, shit. And this was what drew my attention back to Lyme disease. Lyme is a bacterial infection, spread by ticks, and treated with antibiotics. I started doing some digging and once again found so much that made sense to me. Lyme disease suppresses your immune system and can lead to chronic reactivation of viruses like EBV. It can suppress your pituitary gland, the ‘master gland’ that is directly and indirecly responsible for the production of many hormones in the body, including sex hormones. Those who know me or follow my blog will know that my oestrogen and progesterone levels fall within the range for a post-menopausal woman, way below that expected for a 28 year old. Lyme is also said to flare in cycles and many women experience particularly bad symptoms at particular times of their menstrual cycle, which has always been the case for me.

So with all this in mind I decided to get tested. Like many people with chronic illness, I do not have a good relationship with my GP. In fact I don’t even see my NHS GP for anything chronic illness related anymore. Instead I found a private accredited lab that uses a different type of test that has much greater sensitivity and specificity. Yesterday I had the results of those tests back, and it was positive. I have Lyme disease. The one diagnosis I hoped I would never receive. Being caught up in a controversial illness that is so poorly accepted by the UK health service, is not what I ever wanted for myself. For those of us with Lyme (that was a weird thing to write – I am now ‘one of those’), we are pretty much on our own. My next step is to find a doctor, hopefully in the UK but potentially abroad, who recognises Lyme disease in its chronic form and will help support me. The good news in all of this, is that I finally have an underlying explanation for all the problems I have experiened. Chronic EBV never felt like the whole picture. In one of my early blog posts (Relationships, love and infertility) I talked about what sod’s law it was that EBV seems to reactivate when my oestrogen is low, AND that I have chronically low oestrogen. Well, Lyme is an explanation for both of these things.

Nonetheless, there are many emotions associated with this diagnosis. Fear of what lies ahead. Disappointment that I’ve spent so long being ill, fighting the wrong battles and climbing the wrong mountains. Anxiety over the new label attached to my name. Guilt for my loved ones that they too have a new label to consider. But above all, there is huge comfort in the knowledge and understanding I now have, and hope for my future.

 

Reference

[1] Borgermans, L., Perronne, C., Balicer, R., Polasek, O. (2015). Lyme disease: time for a new approach? The British Medical Journal, 351. Available here: http://www.bmj.com/content/351/bmj.h6520

*I have since discovered this paper is sadly not open access so is only available to those who work in academia or related fields – if you would like to read it please let me know and I can send you a copy

Other resources

My story Part 1

My health problems started when I was about 16. I had been on the contraceptive pill Dianette for a couple of years for acne. My skin cleared, but I became severely depressed. I now know that Dianette has been linked to depression, so who knows, maybe that was the cause, or at least a factor.

Anyway, a couple of years after being on Dianette my GP switched me to a different pill called Yasmin. And it was then that my life as I know it now began. For those who aren’t familiar with how the pill works, you take it for 3 weeks and then have 1 week off, during which time you have a bleed, akin to a menstrual period, although biologically speaking it’s actually not a period at all. My first ‘period’ on Yasmin I was sick. Really, really sick. A couple of days before my period began, I got a sore throat, fever, the glands in my neck swelled up like golf balls and I had indescribable fatigue. This got worse over a few days until I was bed-bound. After 5 or 6 days, as I began the next 3 weeks of contraceptive pills, it slowly dissipated and I felt fine again. The next month, the same thing happened again, and the next month, and the next month. It took about 6 cycles before I acknowledged I had a problem, and I needed to speak to a doctor. My GP told me it was nothing to do with my menstrual cycle or the pill – that was impossible. So I continued. In fact, this continued for several years. Every couple of months I’d be at the doctor’s office begging for them to do something, trying to convince them that this was related to my cycle. Looking back, I believe that that doctor really failed me. Every single month on the exact same day, I would get the exact same symptoms, that would last the same length of time. I KNEW this was linked to my cycle, but the doctor said it wasn’t, so that was that. I lived a very difficult life for those few years, in my first full-time job I got multiple warnings for excessive sick-leave. One week out of every four, I was completely bed-bound.

One day I saw a locum GP who suggested we change my contraceptive pill. Overnight, my sickness stopped. I had a normal ‘period’ (those pill-induced periods that aren’t actually periods, but no-one ever tells you that) every month, I wasn’t sick, I had energy, I was well. I was at University at the time, and life was pretty good. I put my previous years of sickness down to some kind of bad reaction to Yasmin, and assumed that was that.

And then one day, a couple of years later, it started to come back. Not as clear-cut this time, not a straightforward one week out of every four. I would still get sick with my periods, but not always as severely, and I started getting sick at other times too.The symptoms were always the same: a sore throat as bad as my childhood bouts of tonsillitis, hugely swollen glands, fever, and fatigue. The word ‘fatigue’ doesn’t really feel like an appropriate description. I always feel frustrated for people who have a diagnosis of Chronic Fatigue Syndrome, because I can only imagine they hate the word fatigue as much as I do. Fatigue is where you’ve done a lot of exercise and feel a bit worn out. Fatigue is when you wake up not quite feeling refreshed. You say ‘fatigue’ and you don’t picture a person who no longer has the energy to speak, who needs to lie down for an hour after making a trip to the bathroom, who as a fully-grown adult requires their mum to be their carer. The fatigue was absolutely unbearable.

These symptoms went on for a few more years, ebbing and flowing in severity, but always there, hiding in the background waiting to pounce at any moment. And then one day at one of my many GP appointments, I was advised to go the NHS walk-in centre in my town which specialises in contraceptive services. I think that in my GP’s exasperation, sending me elsewhere was really just a way to get rid of me; a way of dealing with a complicated case who was just too much trouble to spend time thinking about. But at that walk-in centre, I met the first health professional in all those years who understood. I still remember it now so clearly. She was a nurse. Her name was Penny. When I cried she put her arm around me. She listened to my whole story and wrote down notes on the only piece of paper she had to hand; a sick bag. She got me referred to a specialist GP, who then referred me to the hospital. I wrote her a letter to say thank you afterwards, and she sent me a card back, which I still have now in my drawer of keepsakes.

I was referred to a consultant gynaecologist, who was a lovely man. Once again, I told my story. When I’d finished he looked at me and said “How on earth have you coped with this?” I said “I haven’t”. He was baffled by my symptoms. His plan of action was a stab in the dark, but at least he was trying to help me. He wanted to use progestins (the artificial form of progesterone) to suppress my own cycle, hoping that with no periods I would have no sickness. But in order to get me there without causing me lots of unpredictable bleeding, and therefore unpredictable sickness, he decided to use a severe hormonal treatment called Zoladex. Zoladex is one of many drugs called GNRH analogues, which effectively put your body into a chemically-induced menopause. It is used mainly for women with breast cancer, because it completely shuts down your own production of oestrogen, which feeds many breast cancers. I was put on this drug for 6 months. When I tell people this, I often get raised eyebrows. It sounds kind of severe. It was severe, and it wasn’t a decision I took lightly, but I was sick, and I was desperate.

Read ‘My story Part 2’