An update on my Lyme journey

It’s been two years since I was diagnosed with Lyme disease and it feels like a good time to write an update on how things are going. Apologies for the long post; there’s a lot to say.

Lyme disease treatment

For those who don’t know, I have been having treatment for Lyme and coinfections at a specialist Lyme disease clinic in Washington DC. The decision to go abroad was a very big one and, obviously, the costs involved in that are pretty huge. But, as everyone in the Lyme disease community knows, there is an unthinkable lack of disease knowledge and awareness in the UK, particularly in the NHS, but even to a lesser extent in the private sector. Receiving treatment in the UK, certainly with antibiotics, is pretty much impossible unless you see the tick, present with a bullseye rash and flu symptoms and have a positive NHS test, and even then, treatment is by no means a given. I had been ill for years with an array of weird symptoms and had already had many bad and, to be frank, abusive interactions with medical professionals, so I knew that seeking private treatment, and seeking it abroad, was the right decision for me.

I have been under the care of this clinic in Washington for about 18 months and boy, it has been a tough road. A couple of months after I started treatment with them, things got really, really bad. My physical symptoms were flaring left, right and centre; I was gaining new symptoms; and, worst of all, I became very severely depressed. I suffered with really bad insomnia and I spent most nights crying about how awful I felt, how much pain I was in, and how I couldn’t see a way out of it all. I felt like my brain and my body were on fire. Me and my boyfriend were recently reflecting on how things were for us at that time, and honestly, I don’t know how either of us coped. He had to deal with me crying, sometimes for hours at a time, knowing there was nothing he could do to make things better. That guy has the patience of a saint.

But 2018 has, on the whole, been a year of slow, steady recovery, which I attribute to several things.

In terms of my Lyme treatment, I have been treating with pulsed antibiotics for 18 months. That means I take several different antibiotics for a set period of time, followed by a period of not taking them. This approach is believed to “trick” the bacteria, which are very good at hiding from the immune system under conditions of threat, for example when antibiotics are present. The breaks in treatment cause the bacteria to come out of their hiding places, at which point we hit them again with more antibiotics. A pulsed approach is also aimed at improving the host’s (i.e. my) immune system in learning to deal with the infection by itself.

I do believe that antibiotics have a part to play in chronic infections and I am sure they are part of the reason why things are improving for me. But I am also increasingly of the belief that recovery from Lyme disease is about more than just kill, kill, kill.

The Gupta programme

In January 2018, I started a “brain retraining” programme called the Gupta programme, which is designed for Chronic Fatigue Syndrome, Fibromalgia, and other chronic health conditions. In the chronic illness community you’ll often hear people using the phrase “game changer” and for me, the Gupta programme was my game changer.

The overall aim of the programme is to reduce the ongoing fight or flight response that people with chronic illness tend to experience, in order to calm the system and thereby strengthen the immune system and allow the body to heal. It involves several different elements but the core approach is a) a series of techniques to break thoughts that are focused on illness and symptoms (“I’ll never get better”, “I feel so horrendous”, “I can’t cope with this” etc etc), and b) mindfulness and meditation.

This programme was a massive eye-opener for me. When I first started using the techniques, I noticed that I was having negative symptom- or illness-related thoughts ALL. THE. TIME. As in, hundreds of times a day. When I felt ill, the thoughts were about how awful I felt and how long this would last and what might I have done/not done to cause a symptom flare today. When I felt well, the thoughts were about how long it would last, how much I had to do before the next flare came around, and general worry about the illness. Although understandable, these kinds of thoughts serve no purpose other than to increase my stress and anxiety, stimulating the fight-or-flight response and making healing much more difficult.

Within a few weeks of using the programme these thoughts were cropping up much less often and I found that my mental health benefitted enormously, but I also had some huge gains in terms of my physical symptoms. I got a bit lazy with my use of the techniques over the summer but I have started using it in full-swing again, to great benefit. I really believe that this is the key to health and healing for me and that if I continue to use these techniques alongside the other things I am using to both kill the bacteria and support my body, that I will recover.

Meditation, mindfulness & pacing

I have meditated on and off for a long time, but the Gupta programme really helped to show me how important it is for those of us with poor health (and, to be honest, everyone with good health) to take the time to slooooooooow down. I now have a twice-daily meditation practice and whereas in the past meditation could sometimes feel like a chore, it is now something I look forward to each day. (If you are interested to know what meditations I use, I have details of the ones I have found helpful on my new “Resources” page – click here)

As well as sitting down and actively meditating, I am also learning to live more mindfully day-to-day. This is a part of the Gupta programme and this has quite honestly been life changing for me. I never even realised before that I spent every single second of my life rushing. I thought fast, I walked fast, I spoke fast. Cooking dinner – do it quickly. Reading a book – do it quickly. Having a shower – do it quickly. This, my friends, is stressful. It is stressful for the mind and it sure as hell is stressful for the body, especially a body that is trying to heal from years of chronic infection.

This is a part of the Gupta programme that I still struggle with. I have days where I manage to slow things down and other days where I don’t even realise until I get into bed that I’ve been rushing, mentally as well as physically, all day. I will get there, but this is a habit of a lifetime I am trying to change!

Fertility & hormone balance

Ok, this is a biggy and I suspect it will have its own blog post in the near future. For now, let me just say that my 15 years or so of infertility appear to be reversing. At age 27 I had oestrogen and progesterone levels of a post-menopausal woman. I haven’t ovulated once (as far as I know – but I’m pretty certain) since I came off the pill about 4 or 5 years ago. That is, until last month. I ovulated for the first time in ~15 years, just a few months after my 30th birthday. And, my hormone levels are now normal. This is absolutely HUGE and a sign to me that my body is healing, little by little.

Other symptoms that are changing

There are various symptoms that I am slowly losing and it’s nice to actually write this down because often we get so caught up in the symptoms we still have to work on, that we forget how far we have come. I am gradually gaining more energy. I still have crashes, mostly when I have done too much or allowed myself to get stressed. But on my “good” days I now have what I consider to be the energy levels of a normal person. Woohoo!

I sleep about 9 hours a night. This is more than I’d like but a healing body needs a lot of sleep, and I am letting myself sleep as much as I need, as often as I can. Still, 9 hours of solid sleep is so much better than the 1-2 hours I was getting last year.

I am not depressed. In fact, my mood is probably better than it’s ever been and I feel genuinely happy and contented with my life right now, even with the remaining symptoms that I have. There aren’t enough words to describe how amazing that is.

I am gaining weight. When I first started treatment last year I lost a lot of weight, and got down to 7st 10 (108lbs), which is the lightest I’ve been since I was a teenager. Over the last 6 months or so I have been gradually regaining weight and am now firmly within the “healthy” weight range for my height (though a few more pounds for some extra padding would suit me just fine!).

Most of my other symptoms (headaches, fevers, joint pain, muscle pain, swollen glands….) are still there, but are less frequent and/or less severe than they once were.

What does the future hold?

I will soon be going onto a maintenance protocol with my Lyme treatment, which involves lower doses of antibiotics, taken less often (i.e. the “off” periods of the antibiotic treatment get longer and the “on” periods get shorter). I am very much looking forward to this!

I have been doing some pretty extensive research recently into herbal treatments for Lyme disease, as I would like to support my healing longer-term with the use of herbs. I have been reading Stephen Buhner’s Lyme and co-infection books and I have learned so much, they really are fantastic books. I am developing my own herbal treatment protocol and plan to add this in, with the agreement of my Lyme specialist, when I move onto maintenance. The thing that I like most about Buhner’s approach is that it is less focused on killing the infection(s), and more on supporting the body (reducing inflammation and the cytokine cascade, strengthening the immune system, and repairing damage to organs and systems). Also, they’re from plants, which is awesome. I am attending a local “Make your own herbal medicine” course in a couple of weeks which I am VERY excited about.

There is no question in my mind that I will keep using the tools in the Gupta programme to support my continuing recovery, and I really can’t imagine a life without daily meditation and mindfulness.

As I move towards reduced doses of antibiotics, I plan to get my gut microbiome tested. There is a fantastic company that will test your microbiome via a sample (read: poo), to learn what species of bacteria/yeast are under- or over-populated in the gut. They then provide dietary recommendations to optimise your microbiome. Gut health has huge implications for chronic illness (good books on this – The Paleo Approach by Sarah Ballantyne; Gut by Giulia Enders) and I hope that this will help my journey to recovery.

Mostly, though, my future is about continuing to heal and recover by whatever means necessary. I always assumed that health meant being symptom free, and this was initially my goal for treatment. But now, as I am learning more about health and healing, I want to be so much more than symptom-free. I want to be truly healthy inside and out. I want to thrive. And I honestly believe in my heart that I will get to that place, when the time is right.

Thanks so much for reading my blog and listening to my story.

Katie x

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:

http://www.irishtimes.com/news/health/lyme-disease-patient-freakishly-well-after-us-treatment-1.2982020

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.