Several years ago in the Summer, I got bitten. I didn’t know at the time what bit me. I was in my bedroom in urban Canterbury and had the cat in my arms. I put him down and a few minutes later got into my pyjamas. As I pulled up my pyjama trousers I felt a sharp sting, like a needle going into my thigh. I looked down and there was a little black bug attached to my leg. I flicked it off and thought nothing of it.
A short while afterwards, I got terrible flu. It started with vomiting and then into full blown hot and cold shivers, achy limbs, fatigue and headache. I was in bed for about 10 days and afterwards I couldn’t really shake the malaise. I still didn’t connect the dots.
Several weeks later I noticed a ring-like mark on my thigh. It didn’t hurt, it didn’t itch, it just looked odd and, if I’m honest, slightly alarming. One day at the beach my sister saw it and asked me about the mark. I probably shrugged and told her it didn’t hurt or anything so I was ignoring it. She said that it looked worrying, like a warning. She asked me if I had been doing anything different lately. I had been swimming in the river and we discussed that maybe it was Weil’s disease.
When I got home I looked on google for images of Weil’s disease rash and by chance there was a photo there which looked exactly the same as what I had. It was an erythema migrans rash aka bull’s eye rash and was associated with Lyme disease. I looked on the NHS website. It said to seek medical attention immediately. So, off I trudged to the minor injuries unit in Canterbury where I was told that there is no such thing as Lyme in the UK. Had I been to America lately? No? Then its not Lyme, definitely not Lyme. It was obviously a bruise where I had been hit very hard with a metal tube (because I was incapable of remembering something like that happening?!). I left.
And I left it. For too long it turned out. I told my sister what had transpired and she told me to go to the GP. I rang them up and asked them if anyone there had any knowledge of Lyme to pre-warn them (see, I wasn’t that incapable – yet).
I toddled off to my surgery and saw my lovely GP who not only had a friend in America with Lyme but had also had a patient who came with a Lyme diagnosis. She had that look in her eyes. You know that one of sympathy, pity and concern? She gave me 4 weeks antibiotics and told me not to go in the sun (in August) as they are phototoxic. Just as I had my hand on the door handle her parting comment was to tell me that if I had any strange symptoms or anything unexplained will I please come back? I was a bit perplexed and went home to do more investigating.
I took the antibiotics and was feeling kind of ok, a bit more tired than usual and a bit more lethargic than usual but I put it down to moving house and being a bit overwhelmed. But it wasn’t that. What it was was the beginning of a nightmare.
The first thing I noticed was almost like a veil falling between me and the world. That probably doesn’t make sense to anyone who hasn’t had Lyme. But it really felt like a veil had passed between me and the outside, and also my Self. I was out having coffee with friends and I had to get out of there. Immediately. I thought I might not make it to the car. I felt very suddenly very ill, I couldn’t put my finger on it. (It makes me shudder now to recall it.)
I got to the car and just sat there. Somehow I made it home and I tried to ignore it. Then the headache came. Just the one. It lasted 19 months. The pain was so intense that I cried every day it hurt so much. Crying didn’t make any difference. You know normally if you cry it makes your headache worse well, this one couldn’t get any worse. By this time I was finding it hard to get up. I was finding functioning on a daily basis, doing normal stuff hard work. I used the spoons analogy to explain this. So, every day everyone gets 12 spoons to last them the day. This represents their daily quota of energy.
For most people this is easily enough for the day and they might get to the end of the day and have some spare spoons or they might go for a long walk or a swim or something and find that they need a cuppa and a sit down for a bit but then they would find that they had not actually used up all their spoons. For me getting up out of bed and brushing my teeth would use most of my spoons. Showering was an effort, (you know that feeling when you have the first shower after you’ve had the flu – yeah that’s it, but that was every shower). I had no energy, I had the headache, and then the other symptoms started to appear. Should I list them all?
Joint pains and swelling; air hunger; palpitations; chest pains; tinnitus; burning all over body pain (it was so bad that clothes or bed covers hurt); painful hair (how does that even work?); hair loss; night sweats; weight gain; fatigue and tiredness (I slept pretty much all the time, my record was 52 hours in one go); swollen glands; urinary tract infection (yes just the one, passing blood and kidney pain for 8 months); loss of libido; neck pain and stiffness; jaw pain; muscle pains and cramps; burning pain in the soles of my feet; visual disturbances; eye floaters; vertigo; light-headedness; poor balance; difficulty walking; internal tremors; confusion and difficulty thinking, although actually this was complete loss of cognitive function; difficulty concentrating and reading; forgetfulness; poor short term memory; disorientation and getting lost; difficulty speaking and writing; mood swings and irritability; disturbed sleep (in my case too much); anxiety; and, it got into the tubules of my teeth. I had to have one taken out, the root had turned into wobbly jelly, my dentist had it checked and guess what was in there?! I think that just about covers it, apart from the depersonalisation. It felt like I was sitting in the back of my head and someone else was doing “Me”. And, I lost my connection to the Divine.
It was horrifying. I felt so unbelievably ill. It would get to bedtime and I wouldn’t want to go to bed because I really could not cope with another day of feeling so horrifyingly unbelievably awful. I can’t explain how ill I felt and I’m sorry if you know as you probably also have it.
I joined the Lyme forums and they were full of people who were really very sick and most of them had been for a very long time. I began to get depressed and found myself getting into bed at night thinking about how ill I felt and how awful it was. Luckily, I noticed before too long that this was making me feel worse. So I changed tactic. I would get into bed and say out loud to my husband that I feel really ill. Then I would do something to take my mind off it. My mindfulness practice. I’m not calling it meditation here because I had to fill my mind up with something to keep the parasitic nature of the Lyme out of my thinking and at bay. I did So Ham breathing. Every night, and during the day when ever I found myself thinking how ill I felt. The good thing about doing a practice connected to the breath is that the breath never stops – unless you’re dead! I read all the time. I could only read children’s books, Enid Blyton in particular. And I would read a book and then go to the book shelf and pick it out again and re-read it because I couldn’t remember that I had just read it. And some books I just read over and over again. I didn’t take any of it in anyway!
By this time I had been referred to the top parasitologist in the UK. I was hopeful that this would provide answers and most importantly some treatment options. The appointment started off well. He said that my history read like a text book case study of Lyme. So, we will just do a lumbar puncture to check. I told him that no you won’t actually. Why would I want to put myself though that when it was obvious that I had Lyme. I already had a clinical diagnosis, I had the bull’s eye rash for goodness sake and everyone knows that’s definitive. Everyone it seems apart from the top parasitologist in the UK. We compromised on blood tests. I knew it was a waste of time because the bacteria wouldn’t be in my blood stream by this time. (Yeah, so, they are corkscrew shaped and they drill out of your blood vessels and into the collagen rich areas of the body, they especially like the brain, they really liked my brain!) I went home feeling hopeless and desperate again.
A few weeks later I got a phone call from the man and he said how lucky I was that the blood tests were clear so I obviously did have Lyme at some point but its gone. I asked him where and how he thought it had gone, and why did I still have all the same symptoms. He didn’t answer. (I learnt after a few conversations with him that he was a master at avoiding answering questions.) But he did say that he would refer me to someone else so “we” could find out what was really wrong. I said no thanks I know what’s wrong with me. And that was the last of the NHS.
It was shortly after this that I had my lucky break. Someone on one of the Lyme forums messaged me saying she had been treated by an amazing homeopath and she was better. She also gave me the details of another person who had also been treated by the same homeopath. This was my lucky day. I phoned the office and got an appointment for a few days later.
I was in a state when I got there. I was in tears, in pain and desperate and she was lovely and competent and gave me hope. My treatment began. It was a long slow road back to recovery. And it was hard work. I changed my diet, I began eating meat again after being a vegetarian all my adult life (I only lasted a couple of years on that one), I cut out grains, I did epsom salts baths, clay baths, foot baths, yoga nidra every day, constant mindfulness practice, EFT and, talked to the Lyme bugs. I tried to make friends with them, it wasn’t easy. I actually ended up telling them to go away and being a bit rude and sweary, though I think we are friends now. I also had to make sure that I didn’t slip back into depression. I kept telling myself I am not my body, over and over again. And I concentrated on the spark of my Self that I knew was inside and tapped on my thymus. I did that a lot.
My poor family. Sorry. I disappeared from their lives. I had gone from being a hands on busy mum to being a zombie. I tried to hide it and pretend that I was ok, but I don’t think I really managed.
In the September after I got the tick bite, I started a yoga teacher training, I wasn’t that ill at that stage and didn’t realise how much worse it would get. Its a level 4, five hundred hour training. One day a month. At first I was ok driving myself down to do my day’s training but by Christmas I could no longer drive. So the huzzer drove me down (thank you Hannes). I would say how the f**k I managed it I don’t know but that would be swearing. But yeah, I do not know how I managed it. On some days I would turn up in tears, but in hindsight I realise that it was one of the components in my recovery. I would go at the weekend and then during the week every morning (mornings were my best time) I would sit at the computer and attempt to do my homework. It was painstaking and often ended in tears because I would get the letters of a word in the wrong order and couldn’t for the life of me remember how they were supposed to go, I just knew they were wrong and I just couldn’t get my brain to function. The training was for 3 years. I passed.
At the end of the training I went into panic, I knew I needed to keep doing things so that I kept some purpose going. So I picked up the guitar and then I started a pregnancy training, my heart wasn’t really in it but I did manage to get my qualification. Then I did a teen yoga training and a cancer yoga training. Then I realised that I might never be able to commit to being able to stand up on a regular basis once a week to teach. So, inspired by my amazing homeopath, I decided to do my professional homeopathy training. Luckily I found an online course. I worked extra hard. I passed. Shortly afterwards I applied to do a homeopathy degree conversion. The degree is a 12 module course normally done over 4 years, but with the conversion 4 of those modules are taken from existing professional training, the remaining 8 were done over 10 months. It was ridiculously hard work to be honest, and inspiring. One of our assignments was an oral exam. We had to learn about 15 or so different conditions, the signs and symptoms, how they are diagnosed and any tests used, conventional treatment and side effects and how to treat them homeopathically. At the beginning I felt swallowed up by it. My poor brain! But as I began revising I started to notice something. It felt like the more I tried to remember, the more I was able to remember. I could feel my brain literally stretching. I must have been building all those lovely new neural pathways. I had noticed this before when I decided to start learning to play the guitar for this exact reason. I knew that I was repairing my brain.
All this time in the background, the homeopathy was working its magic. I also tried lots of other things along the way. Chinese herbs (this put me back in bed), cranial osteopathy (this really helped), having 3 amalgams removed (that was a really good thing, although with the first one I didn’t put proper detox in place in advance and yes, back to bed!) and also a root canal removal which was horrible. Luckily I found a very sweet and kind dentist who held my hand (literally), Bowen therapy (nope, more time in bed) and then the Buhner herbs. This was a big game of trial and error. Samento, one drop put me in bed for weeks and I learnt my lesson – take it slowly. It took me months to get the herbs in place at the correct dosage and then to realise that potentising the herbs and making them into low dose homeopathic remedies was the way to go. And they were the perfect compliment to the homeopathy. The yoga nidra and the epsom salts baths and the diet and the mindfulness practice were all chugging along in the background then I added the Wim Hof method (cold showers and a breathing technique) another quantum leap in my healing, and now 8 years down the line I find myself writing a piece that I have imagined myself writing for the last 8 years.
I’m doing an hour’s yoga every day and pretty much fully functioning, though I do still have to pace myself to a degree. And, most importantly I’m able to treat other Lymies and those with similar conditions.
Just to clarify, I’m not writing this for congratulations but rather for encouragement. Lyme is a delicate game of surrendering to the process and allowing it to happen without giving up. It’s like a dance with a devil that I had to make friends with. I do actually feel honoured and in awe of these little bacteria (in my case borrelia, bartonella, mycoplasma and the occasional appearance from EBV) with whom I share my temple. And they are welcome (provided they behave themselves!). I share my body with a highly evolved, super intelligent, parasitic explosion. And I really am much, much better.
I suppose what I’m trying to say is if you have Lyme, don’t give up. Although its hard, I know that, It really is so hard, it is possible. I believe in you.