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

Where I’m at now

Read My story Part 1 and My story Part 2

8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.

But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.

My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.

My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?

In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.

My story Part 2

Read ‘My story Part 1’

So I was taking Zoladex, the menopause-inducing drug, for 6 months. And during that time, something amazing happened. My symptoms went into complete remission. I didn’t have a single day of feeling unwell. In fact, I discovered a new level of ‘well’. I had oodles of energy, I started a bunch of new hobbies and I experienced what it is like to not have to wake up and contemplate how sick you feel today, but to just get up and go, knowing that you’re NOT sick.

Zoladex was a blessing and a curse. GNRH analogues are licenced for use up to 6 months but no more, because of a long list of risks (the big one being osteoporosis). So after 6 months it was stopped, and my cycles were instead suppressed through a double-hit of progestins: the progesterone-only pill (AKA the mini-pill), and the Mirena coil. But a couple of months after my last zoladex injection, I got sick, and this time it was much, much worse. I was permanently sick. There were no periods, no cycles, and no let-up from the symptoms, just a constant existence of sore throats, fevers, swollen glands and fatigue.

It was at this point that I really started to take some control of my knowledge. Working in academia, I used the sources I had available to investigate the scientific literature, to try and understand what my symptoms could be and why they were happening. Since I had got so much worse on high doses of progesterone, my reading led me to some research on progesterone intolerance. Specifically, women with PMS are thought to be intolerant to  progesterone, and oestrogen therapy can be really helpful for them. It didn’t fit my symptoms – I’d never really experienced PMS – but it still seemed like it might be relevant. I asked for my Mirena coil to be removed and stopped taking the mini-pill. I didn’t know what was happening in my body, but I did know that all this progesterone was doing me more harm than good.

I felt at this stage that I had exhausted all the help available from the NHS, and decided to seek help privately. After many weeks of researching, I found a privately practicing doctor who specialises in both women’s hormones and medically unexplained symptoms. At the end of 2015 I had my first appointment with her and instantly felt reassured by her extensive knowledge and understanding. She felt that my symptoms were likely to be viral in nature, and she explained how the immune system is differentially activated and suppressed by different female hormones.

In December 2015, 11 years after first becoming sick, I had a diagnosis. The psychological impact was HUGE. A diagnosis means you can research, you can make sense, you can explain. Prior to that, I felt like I was lost in the middle of the desert, with no idea how to even begin getting myself out.

I had high levels of antibodies for the Epstein-Barr virus, and the combination of antibodies showed that I had been infected with it a long time ago, and that it was reactivating. My bloodwork also suggested that I had PCOS – Polycystic Ovarian Syndrome. My oestrogen levels were that of a post-menopausal woman and my testosterone was high. I was started on a drug called Metformin which is used for diabetes, but is also given to women with PCOS since evidence suggests they are insulin-resistant. In addition, I was given bioidentical oestrogen to try and get my oestrogen levels within the normal range for someone of my age. The hope was that by balancing my hormones, my immune system would be able to take control.

A ‘where I’m at now’ post to follow…