Lyme disease, hope, and the power of privilege

I recently read this story of an Irish man who has made a life-changing recovery from Lyme disease:

Full recovery from Lyme disease is something all patients dream of, but for many, months or years of treatment still only result in minor improvements. The fear of failed treatment is something I, and many others, have to battle with every day. I remain hopeful, because hope is the only way illness is bearable. When you get sick with the flu, it sucks and you feel miserable, but you deal with it because you know it will end soon. In chronic illness there is so much uncertainty and unpredictability, and that, for me, is one of the hardest things to deal with. If I feel well today, that doesn’t mean I will feel well tomorrow. But I always hope that tomorrow will be a better day, that next month will be a better month, next year a better year. The lowest and darkest times in my journey with chronic illness have been those times where hope has faded and all I can see is a past, present and future defined by illness. Hope is an essential ingredient for getting through difficult times.

And yet, it is difficult to avoid the sense of impending doom when you read stories of people who are still unwell despite ongoing treatment. I try to avoid spending too much time on those stories because I know it is bad for my wellbeing and ultimately, if I become one of those patients then I will cross that bridge when I come to it, like all the bridges I have crossed before. Nonetheless, when you are caught up in a complex disease you seem to develop a success-story radar. Your nose starts twitching as soon as you get a whiff of an “I’ve recovered” story, because a) it gives you hope, and b) maybe you can learn something that might help with your own quest for recovery.

I approach such stories with an open-minded but cautious curiosity. Sensationalist headlines are all around us and it is hard to work out fact from fiction, especially since everyone has their own agenda. So, I read this news story about the Irish guy with open-mindedness, with cynicism, with curiosity, but also with happiness for him and hope for myself. And then I got to this:

“His family raised the $90,000 cost of treatment and accommodation through an online fund-raising campaign”

Anyone who has ever done any kind of reading or research into Lyme disease knows that successful outcomes are almost entirely reliant on private healthcare. The current NHS treatment guidelines are so unbelievably far behind the latest science that it is truly frightening. I could write an entire essay on that subject (which, as it happens, I’ve been avoiding because I honestly wouldn’t even know where to start). But private healthcare isn’t the full story. Many people will seek private healthcare for many illnesses, for a bunch of different reasons, and so there are private specialists everywhere. But in the whole of the UK there are about four or five private healthcare specialists who treat Lyme disease according to the latest science. In the whole of the UK. I am currently undergoing treatment with the only infectious disease doctor in the UK that I am comfortable seeing, that I believe will offer me treatments with the most chance of success without ripping me off. So, if he cannot help me, the only option left will be to seek treatment abroad.

And this is where Lyme disease discriminates. Those who have no savings and no finances to fall back on have very limited treatment options. Many people with Lyme disease are too sick to work, and have often been ill for some time before being diagnosed. There is one clinic that I know of in the UK that charges very little by private healthcare standards, but you are still talking a hundred pounds or so for a consultation, plus the cost of private prescriptions and travel to the clinic. For people who have very little, a few hundred pounds is an incredible amount of money to try to source.

The next step up is the other small handful of UK clinics that offer more advanced treatment, costing anywhere from a couple of thousand to perhaps £10-15k for a course of treatment. But Lyme disease is a complex illness, especially for those who have been sick for a long time, and there are still no guarantees of a recovery.

The final option is to seek treatment abroad. I know people who have had great success with specialist clinics in Europe, but the clinics with the very best outcomes appear to be in the US. It is hard to estimate how much treatment there would cost since I have not been through it myself, and since every patients’ course of treatment will vary. But you are probably talking a minimum of £10,000 and there really is no top-cap on what you could spend. Some people who do not get better with oral antibiotics have better success with IV antibiotics, which of course requires you to be in constant proximity to a clinic. I have heard of people who have sold their houses and moved their families abroad in order to receive such treatments.

Honestly, if someone told me I would 100% recover and be back to full health if I quit my job, took out a £75000 loan and moved to the US, I think I would do it. But no-one can ever promise a 100% recovery rate, and people are making huge sacrifices for an unknown chance of getting better. And anyway, how on earth would I get a bank to loan me £75k and even if they did how would I ever pay it back?

There are the occasional stories of patients who have recovered from Lyme disease through self-treatment and with very little money, but these stories are few and far between. The vast majority of the success stories seem to be, like the Irish story above, that have enormous financial implications. This might partly be a reporting bias. Perhaps the £75000 recovery stories make much more exciting reading than the £200 recovery stories, so they’re the only stories we hear about. But I know from patient support groups that for Lyme disease patients all over the world, finances are an enormous barrier to getting well and a huge source of strain.

I am very fortunate to have a family who have worked hard and saved hard their entire lives, and who brought me up with the same values. We are by no means rich or well-off, but I know there are many patients in a much worse position than me. The money available to me is not unlimited, but there is enough for me to seek some form of treatment right now. I cannot imagine living with the stress of this illness while knowing the treatment that seems to be helping will have to go on hold because there’s no money left, or having to make the choice between a prescription and food for the week.

So while recovery stories like the one above give me hope for myself and for all of the patients out there who are still suffering and still seeking answers, those stories also fill me with anxiety and sadness. Anxiety because maybe recovery is preserved for those who have £75,000 to spend. And sadness that the hope for a healthy future is limited, like so many other things in life, by the power of privilege.

Popping the contraceptive pill like smarties

Anyone who follows scientific research or health-related news will probably have noticed the recent media frenzy about a study, published in JAMA Psychiatry, that has demonstrated a link between hormonal contraception and depression. You can read the paper here.

The study was the largest of its kind, following over 1 million Danish women aged 15-34 over a period of 13 years, and investigating contraceptive use, diagnoses of depression, and prescription of antidepressant medications. They demonstrated that all hormonal methods of contraception studied, including the combined contraceptive pill, progestin-only pill, contraceptive patch, vaginal ring, and intrauterine system, were associated with an increased likelihood of a subsequent diagnosis of depression, and use of antidepressants. The risk was even greater in adolescents.

Although I take an interest in most health-related research, my eyes are always drawn to anything related to a) hormones and b) mental health, due to my own personal experiences. I was first prescribed the contraceptive pill when I was around 13 years old, due to acne, and my miriad of health problems began not long after. I was severely depressed for most of my adolescence and early adulthood, and I always wondered if my contraceptive pill usage was a factor. I first became depressed around the time that I started taking the contraceptive pill, and this recent research suggests that could have been one of the factors that led to my mental health problems.

I’ve also always been convinced that the contraceptive pill was a huge contributory factor to my physical health problems. My recurring viral symptoms first started when my GP switched my contraceptive pill when I was around 15 years old, and they used to happen every single month when I had the pill-free week. The symptoms then completely went away for a couple of years when the pill was changed again, and throughout my life the severity of illness has been very clearly linked to hormonal changes.

I don’t think it’s sensible to blame anyone or anything for a health condition. It would be easy to slate the GP who prescribed a strong oral contraceptive to a 13 year old. It would be easy to see the pill as the devil, the good-for-nothing evil tablet that may have led me to a lifetime of ill health. Maybe, while we’re at it, I should blame myself for taking them? But ultimately, everyone on this planet is just doing the best they can, and both me and my GP obviously thought, rightly or wrongly, that it was the best option at the time.

Nonetheless, I do have concerns about attitudes towards the contraceptive pill, certainly in the UK. GPs seem to be quite keen to prescribe it to anyone who has a vagina. I don’t remember having to beg for the pill at that tender age of 13. In fact, I’m certain it wasn’t even my suggestion – I wouldn’t have known to ask for such a thing, and certainly not for acne. I subsequently spent the next 12 years or so of my life on the contraceptive pill, absolutely no questions asked, despite the fact that I was very sick for much of that time, with a clear link to my menstrual cycle. These days, I’m much more conscious of what I put into my body, and I honestly wouldn’t dream of touching a contraceptive pill anymore.

But yet, when it comes to contraception, it still feels like there is an underlying assumption that it is the woman’s problem. If a couple want to have sex but don’t want a baby, then surely it is a shared responsibility to achieve that? From my own experiences in my early 20s, I remember thinking that the pill was really the only choice. If I wanted a sexual relationship then I basically had to be on the pill. No-one seems to much like using condoms, and no way in hell was I getting a metal device shuffed up my hoo-ha. So the pill it was, and to be honest, I was quite happy with that. I don’t recall anyone ever explaining to me exactly how the pill works, or the potential risks associated with taking it (including as the research now suggests, an increased risk of depression).

In fact, I remember only a couple of years ago, realising via a book I was reading, that the pill completely suppresses your own hormonal cycle. One of its mechanisms of action is to suppress ovulation. No ovulation, no baby. But ovulation is the primary mechanism by which women make sex hormones (oestrogen & progesterone). So no ovulation also means no hormones (or at least, very low levels of hormones). I couldn’t believe it. For all those years, I had effectively been producing next to no hormones of my own, and was taking synthetic ones instead. How is that ok? How is it acceptable that I was doing that for my entire adolescence, without even knowing it? Perhaps I was just naive and stupid for not doing more research, for not knowing that that was what the pill was doing to me. But I sure as hell don’t think I am the only one to have taken those pills without fully understanding its effects.

I really think this reflects a broader issue in healthcare: patient choice. In research we have informed consent. That is to say, anyone taking part in research must provide their consent to take part, after having been provided with all the information they need to make an informed decision. A patient would not be expected to take part in research without knowing exactly what is expected of them, and potential benefits and risks. Why on earth, then, is this principle not applied to everyday healthcare? Surely a patient, as the end-user of the service, has a right to make a choice about whether or not to take a medication? And surely, that decision, should be informed? I don’t expect that my GP, all those years ago, had any inkling whatsoever that the contraceptive pill could have the potential to affect my health so badly, in the way that I believe it has. But there are clear risks associated with the pill, and I should have been provided with all the information necessary to make an informed decision. That is not to say that I would have made a different decision. I had acne, and that made me miserable, and there’s a chance I would still have taken those pills if I had known the potential risks of doing so. But at least I would have been making my own decision based on all the information available. Maybe, then, I would be able to look back on that decision without the pang of regret that I feel now. It is about time that patient-doctor relationships are seen as a two-way process of communication. Not an expert dominating their authority over a naive layman. After all, the patient is the expert of their own body, and surely that is important too?

Facing the fear: Low dose naltrexone

When I started this blog, I was unsure whether to include posts on specific treatments. By writing on a public blog, you are inviting opinions from anyone in the world who decides to read what you’ve written. I have surprised myself at how willing I’ve been to blog about quite personal topics, like my recent post on infertility, but writing about medications/supplements really frightens me, and I’m not completely sure why.

Perhaps its because I worry that someone will get in touch with evidence that a treatment isn’t as effective as I think it is, or that it has potential side effects I’d not considered. Then what would I do, if I realise that my original decision was misinformed? Or perhaps it’s because, in letting the world know what treatment I am trying, I open myself up to giving the world the disappointing news, somewhere down the line, that the treatment hasn’t helped. I’ve tried a few things over the years to help my health and honestly, most of it has only had a small effect at best. I’m kind of used to this disappointment now and when I try something new I always go in with equal doses of hope and realism. But the rest of the world may not be so accustomed to such disappointment, and how sad I would feel to have to break the news to all those who are rooting for me, that a treatment I’d posted so publicly about has not helped.

Then I think there’s a degree of shame when it comes to drugs. Somehow you are a failure if you have to resort to medication. People frown upon drugs, tutting at the thought of someone so young and apparently healthy on the outside popping pills at night. Similarly, I feel a huge sense of embarrassment about anything ‘alternative’ like supplements or dietary changes. They are so massively unaccepted by so many people in the medical community that I think we are programmed to believe that if it’s not powered by a drug company, it’s useless. I am a huge believer in holistic health and in the importance of nutrition for a healthy body, but somehow I still feel like I have to convince people that this is common sense and not hocus-pocus.

Anyway, whatever the reasons behind my fear, I am trying to follow the attitude I always set for myself, which is – feel the fear and do it anyway. I have lived most of my life with varying degrees of anxiety and many years ago I firmly told myself that I would no longer let anxiety rule my decisions. That’s why I’m in a job that requires me to give presentations, despite being incredibly socially anxious…I’m sure my brain must swear at me on a very regular basis.

So here I am, posting about a new treatment: Lose Dose Naltrexone, or LDN. Naltrexone is an opioid antagonist, and it’s licensed for the treatment of alcohol and drug dependence. Preliminary research has shown promising use of low doses of naltrexone (1-4mg; about 1/50th of the dose used for drug dependence) in treating a range of chronic conditions including chronic pain, autoimmune diseases like Crohn’s disease and Multiple Sclerosis, and viral infections including HIV/AIDS. Unfortunately, since LDN is no longer under patent, no pharmaceutical company stands to make any great profit from it. This means, in turn, that no drug companies have any motivation to fund clinical trials into its use. There are some small-scale studies that have found it to be successful in treating a range of conditions, but none big enough or conclusive enough to say that LDN should be used as a first-line treatment. It is therefore up to patients like me to stumble across it themselves, and find a doctor that is willing to prescribe it. It is perfectly legal, but requires an open-minded doctor that is happy to prescribe off-label.

Because of the lack of definitive research, it is not entirely understood how or why LDN works. But it is believed that its main mechanism of action is in its ability to increase endorphin release. Endorphins modulate the immune response. I am yet to read enough science to understand exactly how this happens, but interestingly I read today about a link between oestrogen and endorphins. Apparently oestrogens increase production of endorphins (*fascinating tidbit: the soaringly-high levels of oestrogen at the end of pregnancy mean that endorphins are super high during childbirth, right when they’re needed for pain-relief. Isn’t the human body incredible?). So, this potentially provides an explanation for my EBV-oestrogen link. I have always had more frequent and severe EBV reactivations when my oestrogen is low, which could be because when oestrogen is excessively low, my endorphins will be low too, and low levels of endorphins impair the immune response.

Anyway, I first came across LDN about a month ago, and have had it in the back of my mind since then. After a few weeks of poor health, I decided to pursue a consultation with a UK doctor who prescribes it. Today, I had that consultation, and she agreed to support me in a trial period of LDN. So, as of next week, I will be taking LDN. I have been given all the warnings that a sensible doctor should give: that it’s not a miracle cure, it’s not guaranteed to help, and I could experience side-effects. Generally LDN is being used for autoimmune diseases, and the only evidence I have found for its use in EBV is completely anecdotal (confession – most of it is actually on a Facebook group, which in the academic world of ‘knowing your sources’, really is about as unreliable a source as you can get). Nonetheless, it has a good side effect and safety profile as far as the evidence goes, and having weighed up all the evidence I am pleased to at least be giving it a go.

Here’s hoping, with my ever-realistic hat on, that I may see at least some small benefits from LDN. 

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…