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As a sufferer with chronic #LymeDisease since mid-2013, LDUK asked me to share my story. The more we can do to raise awareness during #LymeAwarenessMonth, the better. This is my personal contribution to #WakeUpToLyme. I hope it helps anyone, be they a fellow sufferer, or a family member or friend of someone going through this with them.

This is a copy of the post I was asked to write for the Lyme Disease UK blog, May 2019.  It covers some details from my earlier post re the initial crash and struggles with the UK medical profession, an update subsequent to my initial trip to Brussels. The focus is ultimately on what followed that and the impact on those I love. Ultimately, getting to such a low point through destructive behaviour that I had to find a way back.

As you read this, I can only reinforce what I’ve learned in terms of my approach: You do not ‘beat’ a chronic illness like Lyme Disease. Nor do you ‘manage’ it. Personally I have found the best approach and mindset is to “work with” it. 

May 2013:   Body crash, bed ridden & frightening weight loss

I’d been struggling for a period of about 15-18 months prior to this with cycles of feeling really rough. Not quite enough to make me too sick to work but disturbing and puzzling nonetheless. I have always been healthy so it wasn’t normal for me to be struggling like this. I knew something was up but I had no idea what it might be. I did begin to worry I was simply working too hard and my body was reacting. However, in May 2013, my body totally crashed. I went from taking part in running races to this:

  • Bed-ridden for initially 10 days and slept almost constantly for 3 days.
  • Lost almost 14lbs (6.5kg) within 3 weeks!

My wife made me drink fluids and eat what I could during this time. I literally had no appetite for any food or drink and I was unable to think for myself during those 3 weeks. For family, it was a frightening time. I was oblivious until reaching the end of those initial 3 weeks. Then I encountered these symptoms which left me feeling at a total loss, frightened, frustrated and totally inadequate. I didn’t realise then that the last point was the beginning of a much darker chapter mentally.

The Bullseye Rash Myth

Far too much publicity on anything raising awareness of Lyme disease seems to highlight the importance of the ‘classic’ bullseye rash. I did not get this and I later learned that between 50%-60% of Lyme Disease sufferers are the same. And they’re the diagnosed ones! Instead, I tended to get rashes on my chest and in my armpits. Also what I had thought were spider bites but turned out to be very painful nodules that appeared every six weeks, to the day! When that happened I knew there was something more fundamentally wrong with my health.


Navigating the UK Medical Profession

I have to say I was incredibly lucky in having a very understanding and empathetic GP. We left no stone unturned in terms of extensive blood tests, x-rays and the checking of all my organs. Despite this, I found this period to be incredibly frustrating and was in despair in the end. Not knowing what you’re actually dealing with when you know something is fundamentally wrong, is very unnerving. I found myself wishing for a test to identify something, anything that could then be treated. This may sound a bit perverse to wish for anything to be found. I simply wanted to know what I was dealing with so I could be treated. At times like this you start to wonder if you’re losing your sanity and if this is all in the mind. This wasn’t helped at all by a very dismissive Infectious Diseases consultant and his equally dismissive registrar, who I was referred to via my GP. Basically my test results didn’t meet their standard test indicators so I was literally told that it was viral, to go away and to stop my treatment of antibiotics. This was a real blow to me at the time. If it hadn’t been for the help of family taking notes at those meetings, I’d have really struggled to make any sense of what was going on. And I would have blamed myself completely for what was going wrong. Thankfully a Lyme disease specialist in the South West reassured me it wasn’t in my mind at all.

I cannot stress to anyone in the medical profession how important it is to be more open-minded when someone who is clearly in distress, who knows something is wrong, comes to you looking for an answer. Please do not be dismissive when they tell you their story. In fact, allow them to tell you that story and think beyond your own specialisms and bias. Please.

So while I tried to find a way of accessing treatment and a firmer diagnosis I tried holistic treatments like reiki and kinesiology – both of which were very helpful.

Work were also incredibly supportive in allowing me to take extended sick leave followed by a very gradual return to duties. This helped hugely in reducing the guilt and anxiety I was feeling about being off then returning. Anything like this really knocks your confidence.

July 2015:    Brussels and from desperation to hope

Through mid-2013 to mid-2015 I had been on a series of antibiotics that often helped temporarily but I would always relapse and experience a flare up in symptoms. I had also been diagnosed with depression from January 2014 as a direct result of my chronic illness and I was prescribed fluoxetine. More on that later!

Thankfully it was family who were proactive in extensively researching possible options in other countries. We looked all over Europe and America. Ultimately it showed that mainland Europe was a realistic option for me, with medical professionals in places like Germany and Belgium having far more awareness and understanding of dealing with Lyme disease.

So early July 2015, I headed to Brussels to see Dr B. At this point in the process I started to wonder if I would ever have anything positive to work with. I walked in a total shadow of my former self, half expecting to be told it was in my mind again. What followed was a consultation of over an hour where he listened to my story, went through an incredibly extensive symptom questionnaire and examination. To hear him tell me I was suffering from a “multi-systemic infectious disease” was an overwhelming relief!  He also explained to me that I was very likely to be suffering with co-infections and that the Lyme disease had been in my system for so long (since as far back as Nov 2011 – Feb 2012). One major co-infection was Babesia – a malaria-like disease. This was pretty severe by this point. He also explained that my immune system was totally shot and needed rebooting. This came very gradually.

I was put on a multi-faceted treatment plan to tackle the disease and co-infections. The doctor also advised me to take other steps to facilitate good gut health as much as possible, such as going dairy free for 3 months, at least. I am still dairy free to this day! We anticipated I may be on a 5-12 month treatment programme in total. I left Brussels with genuine hope and a renewed sense of purpose which I hadn’t felt in over 2 years! I cannot tell you what good that did mentally, for a period of time. I ended up on medication until December 2016 – far longer than originally thought. Progress with medication was not a linear path either. Sometimes we had to revert to a more extensive programme, at other times it was a case of changing some medication or the dosage. The key was charting my symptoms and ongoing communication with Dr B between appointments. Below is an example of one month. In total I had 4 consultations in Brussels, supplemented by some email, phone, Skype chats.

The financial cost to myself and family was enormous. I’m not talking consultations with Dr as they were relatively very good value. It was the cost of some trips to Brussels, the sheer volume of medication, the cost in 2 lost promotions. Literally thousands of pounds. But at that time all that mattered was my health. Again, I know I’m incredibly lucky in having a family able to help out with the funding of the treatment at such a desperate time.

Dealing with lack of understanding

Note that I did not tell anyone other than closest family that I was off medication. People want you to be better. As soon as they know you’re off meds, there is an expectation that you must be over it. In my case – and this is apparently very common with chronic Lyme disease – I will never be ‘cured’. It will continue to lay dormant in my system and can in fact flare up, if I push things too hard. That is hard for me to deal with so I don’t expect family or friends to fully appreciate this. It doesn’t mean I can’t get frustrated with their lack of understanding though. However I have to accept this and not dwell on it.

Dealing with Depression

On this I can only describe myself as a total hypocrite. I have family and friends who have struggled with depression for years. With all of them I have been genuine in believing and assuring them that medication for depression should be thought of in the same way as medication for any other illness. However, on taking medication myself, I found I was branding myself a failure, weak, inadequate. That inner voice became ever more negative and critical.  Never a good place to be heading.

You will instantly recognise this was only ever going to be destructive. I talk about this openly in the Blokeology podcast – from about 25 mins in we chat in raw detail about my Lymes journey, dealing with depression and the awful impact this had on myself, family and friends.

The paradox in all of this was that as my health began to improve, my mental health plummeted to a point where my constantly berating and almost cruel negative voice resulted in very self-destructive behaviour. I actively told myself I was a failure, a sht husband, sht dad, sh*t son, brother, friend and all the rest of it. I ultimately became exactly that by being self-destructive, by actively pushing people away and making other poor life choices. My upbringing was always one of being open in communicating with family and yet through this extremely dark period, I had done precisely the reverse. Ultimately, I reached such a low point and destroyed everything that was dear to me and I came to realise I could either sort things out or things may be permanently lost. I was incredibly lucky that those dear to me where willing to listen, understand, forgive and not forget. I made promises to myself and those around me to return to be a better person but this time, being far more self-aware. Not one day goes by when I’m not thankful to family and friends for the chance they gave me. I do not underestimate the impact this had on them.  And I continue to keep my promises such as reading a verse from Lau Tzu every day (the Tao Te Ching text), meditating every day, and talking openly.

I no longer take any medication for depression. I had been questioning it for some time as I felt, for me, that the daily routine and promises were what were truly helping. What helped me finally make that decision was reading Lost Connections by Johann Hari. A highly recommended read, it’s about how we live in a sick society so it’s no surprise our mental health suffers. He is very clear in his message that medication can work for people. What he is also very clear about is how big pharma has manipulated test results in order to obtain licenses. I have been fine since coming off medication. Again please note that I am not for one second suggesting others do this, or that they are at all weak for taking medication. Whatever works for your mental health, I would wholly support and endorse. You have to find what works for you.

So to finish…

I now have a new normal. I will never return to how I was before May 2013. This I accept thanks to the kind explanations of Dr B, and an Occupational Health specialist and a counsellor who specialised in “Internal Family Systems” – a therapy that deals with the various parts of our personality.

Being Proactive

A few brief points here:

  • I still keep a daily log of my main symptoms, plus wellbeing related things I do to help my health.
  • I meditate daily.
  • I exercise as often as I can. The difference is knowing where my ‘red line’ is and not pushing beyond that with exercise of work for that matter. This helps enormously.
  • I talk openly about my illness and the impact on my mental health. Communication helps not just yourself, it helps everyone around you too.
  • I take daily supplements that are key to helping maintain a healthy immune system – Grapefruit Seed Extract and Berberine.
  • I consider myself very lucky indeed. I am still able to be active, I still have my family, I have very supportive colleagues.

Some key lessons for anyone reading this:

  • Be kind to yourself. You can often be your own worst critic, particularly when you feel you’re not getting anywhere with treatment, or when suffering with any flare ups.
  • Keep a log of your symptoms. This was done while trying to find out what was going on. Then done in much more depth after seeing Dr B. These logs help you identify patterns in your symptoms. Any medical professional you show these to will find these a valuable insight to your story.
  • Maintain a log of your symptoms even when you improve. I still keep a daily log to this day. It helps me identify and even pre-empt lapses. This has been an enormous help with balancing work, family and exercise.
  • Read and research. You may often find you yourself are not capable or simply don’t have the energy or mindset to cope with this at times. If that’s the case ask family and friends if they can help by undertaking this on your behalf. If you don’t have anyone that close to you, seek help from communities like Lyme Disease UK.
  • Talk! As you read with my points about depression. You can very quickly and unwittingly shut yourself off from the very networks that you need. Talking to people who will listen and not judge is an enormous help.
  • Never take no for an answer. Keep pushing if you are struggling for a diagnosis. You know your body better than anyone else possibly can.
  • You may find the book “Healing Lyme” by Stephen Buhner very informative and helpful. He has his own treatment protocol and I have followed some elements of this.

To repeat: You do not ‘beat’ a chronic illness like Lyme Disease. Nor do you ‘manage’ it. Personally I have found the best approach and mindset is to “work with” it. 

I truly hope this helps you and those close to you – be they partners, immediate or extended family, friends and colleagues.

Take care

Jeff

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