HEAR HEAR!! Hyperacusis and Lyme Disease

One of my most debilitating symptoms of 2011/2012 was noise sensitivity (technical name hyperacusis). After the health issues I faced in the first half of 2011 due to (then undiagnosed) Lyme Disease (you can read more about the full story here) I had this ringing in my ears (tinnitus). It felt like my brain was talking to my body saying ‘what the fuck???… something has happened – reboot to safe mode and stay on high alert for the foreseeable. Over….’

Now, the tinnitus was annoying, niggling – especially when you’re on your own in a quiet room, or trying to get to sleep. However, after dabbling in various bands as a bass player over the years I was kind of used to it, so that I could handle.

I don’t recall the noise sensitivity occurring as early as the tinnitus, but I know now that they tend to come hand in hand. I’m pretty sure that it was after the steroid treatment for pericarditis that I developed neuroborreliosis –  and this was when the noise sensitivity hit hard. In a futile attempt to return to work in September 2011 I found that the harder I concentrated or thought, I’d set off this spiral downwards that I can only explain as feeling totally crazy, gone, psychotic, totally detached from reality. screen-shot-2012-04-28-at-19-21-50Noises and conversations would all sound the same volume, all at the forefront of my attention as my brain struggled to filter or tune out of the non-necessary sounds – an automatic process (part of the sympathetic nervous system) that goes on without us knowing.

That high alert state is known as the ‘fight or flight response’. It’s an animal instinct that sends our senses on high alert in response to perceived danger or threat to our well-being. What it means for an individual (or what it meant for me) was that sudden noises such as someone accidentally dropping something, certain frequencies of sounds – such as cutlery, crockery, young kids voices screaming or laughing would send a shooting sense of fear through your body and raise stress levels immediately – like “FUCK – IT’S A LION!!!”.images If you don’t manage this quickly, the stress makes the fight or flight response more acute, which makes you more stressed… so the cycle gets worse. When you find yourself in a busy or echoey place such as a swimming pools, shopping centres, restaurant or pub – there is too much sound for the brain to process so ‘the gates’ (my pet name for the filtering process) are left wide open. At it’s very worst my instinct was to find my bed, shut the curtains, dive under the duvet and sob until it passed. This happened on a few occasions – one time in the middle of Lakeside Shopping Centre (Essex) when ‘the voices’ just got too much.

I read a lot about tinnitus and hyperacusis whilst all this was going on (in a sick kind of way I was fascinated, borderline obsessed, a lot of the time with what was going on with my body). I had read about tinnitus re-training therapy and how you could get treatment on the NHS. The NHS had failed me miserably at this stage so I was determined to get something useful out of them! I saw my GP, who referred me to ENT. A few months later (sigh…) I had my ENT appointment who tested my hearing and (of course) all was fine. I had to push it a bit but I eventually got referred (via ENT) to a Hearing Therapy specialist. When I saw her she was a very kind, understanding lady who herself was deaf with hearing aid implants. She was incredibly understanding and sympathetic to both my hyperacusis and also my Lyme Disease diagnosis. She explained to me about the fight or flight response, and how it is common in chronic illnesses. She explained that hearing aid users also suffer similar (but less extreme) issues of not being able to tune out of non-relevant sounds or noises and how she had to avoid busy restaurants and shopping centres like I did.

I didn’t even mention the White Noise Generators (WNG’s) that I had previously read about before she dug some out of her drawer and gave them to me to try. WNG’s are a hearing device that fit behind or in the ear. They emit a low level white noise (that old TV static sound that goes schchchchhchch…..). 22ma-opentip__13536_zoomYou set the output level to the same level as your tinnitus and wear them for long continuous periods, which (in tinnitus re-training) is reduced over time. She told me that they can be very useful for de-sensitizing the hearing for hyperacusis sufferers so I went away and tried them. The results were amazing – although I still suffered in certain environments I could tolerate much more and more importantly prevent the stress cycle from that snowballing effect – if noise did affect me it was something I could manage. She explained to me how it was important not to wear ear plugs and how it was best not to avoid these noisy environments as facing the issue head on, pushing through it, would benefit more in the long run.

The WNG’s were ever present in my ears for months and really enabled me to take a big step in recovery – the stress cycle can exacerbate Lyme symptoms and continually set you back.

One bizarre thing that was going on through all of this was that I was still making music with my band – something I could do with almost complete comfort – apart from the odd unexpected sound from a drum or keyboard which would scare the shit out of me, the actual playing, the loudness of the band playing together was entirely comfortable. Because it’s something I love doing there was part of me that thought maybe a degree of this is psychosomatic? I laughed inside when I thought about what some people might think – complaining of noise sensitivity, wearing WNG’s yet playing loud music in a band…. good job I don’t give a toss about what other people think anymore (smiley face, laugh out loud)….

When I spoke to my Hearing Therapy specialist about the music thing she explained something to me that made total sense. Music is something that your brain can dismiss as non dangerous – when a rhythm or tune starts your brain is so used to hearing music (since birth we are tuned to our western scales) that it knows what is happening next and dismisses the sound as not dangerous. I can’t explain this any better than this document – which explains the cause of tinnitus and hyperacusis, and how music relates in more depth.

I think I wore the WNGs for about 6/8 months in total. At the time I was taking various antibiotics for Chronic Lyme Disease – which got me to a much more reasonable state of health for a while. After the antibiotics had finished I was started on a herbal protocol of Banderol and Samento (by nutramedix). Within a week of taking Samento (I had started Banderol 2 weeks sooner than the Samento) I found that my hyperacusis had relatively gone. I don’t know if it was ending the antibiotics, starting the Banderol / Samento combination or what, but it was a very welcome improvement. I am really interested to know if anyone else has made this connection – maybe Banderol / Samento can more easily penetrate a central nervous system infection? Interesting – and well worth a shot if you suffer from tinnitus / hyperacusis.

Nowadays I can happily have my two young kids screaming round the house without having to disappear upstairs as often. I can go to a busy restaurant or pub and easily push through the noise. I’m not always entirely comfortable – and I still have some trouble tuning in to someone talking to me if there’s a lot of background noise  – but it’s more a case of not being able to comprehend or ‘tune in’ to what they’re saying rather than feeling so uncomfortable.When my symptoms flare up (Lyme Disease is very cyclic in how sick you feel) my noise sensitivity is worse, but I resist wearing the WNG’s these days and just push through it – it’s a personal achievement not to rely on them but when my hyperacusis was at it’s worst, they really helped. Compared to where I was, that lowest of the low, living hell – over the insanity line in a dark room under the duvet…. I’ll take it thanks 😉

Thanks for reading – hope it helps!

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My Lyme Disease Story…. so far…..

OK this one is more just to document my story so far. There is very little humour in it so here’s a random picture of some bad Chinese translation to address the balance:

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The purpose of this is to hopefully help guide newbies of similar symptoms towards Lyme Disease, and also provides me with a means to share a link rather than have to write this bloody thing out every time I need to share my experience. When I started treatment I got my generic story down on file and sent this out to various media contacts and I did this again in May 2013 as part of that year’s Worldwide Lyme Protest.

My view is that it’s every Lyme sufferer’s duty to make their story public – this is the only way things will change. It takes a lot out of you when you’re trying to recover but your voice needs to be heard. The best way to win an argument is to shout louder than everyone else! It’s also very rewarding when you get randomly contacted by someone who heard you on the radio or read your story in the local paper knowing that you directly helped that person improve their chance of a better life. If you are a Lyme sufferer and have not yet done this, stop reading this and JFDI!!

In September 2007 I was bitten by a tick after walking my dog locally (Langdon Hills, Basildon, Essex – which I now know is a bit of a hotspot for ticks – I’ve pulled several ticks off my dogs in the past year).

I had no idea of the dangers of ticks – or indeed what it was so I yanked it out with my fingers and thought nothing of it.
Note – should you ever need to remove a tick follow this guide to do it properly!

A week later, my ankle suddenly swelled (within an hour I went from standing fine to needing to elevate it due to the pain), and I had a red expanding rash from the bite site and I had to keep my leg elevated as it was very painful. My GP diagnosed it as cellulitis, and gave me 1 week’s amoxicillin. At this time I also had flu symptoms which lasted for about a week.

I didn’t think anything more of the bite (I had no idea of the dangers of ticks and the disease they carry) but I knew something was up with my health – every time I ate, I would get aching limbs and get minor lethargy and I was realising that when I got ill, I got really ill – like little sick bugs would leave me bed ridden. I spoke to my GP about this, he did the standard tests diabetes, blood count etc all came back OK.

Then, in February 2011 me and my then pregnant wife Kate had a very stressful day – we had a scan and the scan midwife didn’t like one of the brain measurements from our unborn baby. Having previously suffered a stillbirth at 27 weeks (back in 2005), I felt this immense stress and pressure on my body as that horrendous experience all came back to me. Kate was a rock that day, I was a mess! We got referred to Kings in London, drove up there that day, waited all day and thankfully everything was fine with the baby (Rosie is now 2 1/2 years old as I write this).

During that day I felt a pain in my shoulder and chest which got worse when I breathed in or out too far, or when I laid back.  The pain worsened during the following night – so much so that I couldn’t sleep. I had experienced the same chest / shoulder pain before, after working hard on a business trip in Romania in November 2010 – that time it was diagnosed as muscular / skeletal, but it went away after a few days so I thought nothing of it.

The next morning I finally resigned to the fact that I had to go to A&E. By the time I got there I pretty much collapsed in A&E Basildon Hospital and to cut a shambolic story of NHS incompetence short – I was diagnosed with pericarditis and pleurisy. I had a high fever and flu symptoms in conjunction. Throughout the next few months I would again be admitted with recurring pericardial effusions. As the year progress, I developed lots of other symptoms too – severe tinnitus/hyperacusis, severe fatigue and myalgia, IBS, neurological symptoms (brain fog, slurred speech, cognitive impairment). At one stage I was treated with steroids (prednisone) which I can directly link to a worsening of neurological symptoms.

Nobody I spoke to knew what was wrong – I saw countless doctors – even explaining the bite I’d previously had. My NHS test results for Lyme Disease were negative at this time (though the LDA have since told me that a short insufficient course at the time of the bite / EM rash will suppress the antibody response and leave that person seronegative. I also now know that as many as 50% of true Lyme Disease cases are missed but current blood tests. Scary when the NHS rely on these 100%?!?).

By the beginning of 2012 I had read about Lyme Disease, how it can lay dormant and then attack you after an episode of severe emotional or physical stress – along with all the symptoms I was experiencing everything fell into place. I mentioned it to a rheumatologist I was referred to at the time (I was still going round in circles to try and find out what was wrong with me) and he laughed at me and said ‘you don’t have Lyme Disease’.

A month later I was crippled with unbelievable neuropathic pain in my shoulders, neck and back. I was unable to raise my head or make eye contact and was worsening by the day. I went to A & E who diagnosed the pain as neuropathic.  I knew it was Lyme and I knew what stress had done to me before so I decided I did not want to be an inpatient I told them to ‘just give me some morphine and I’ll be on my way’, which they did. I knew I just had to wait for my Breakspear appointment (who I’d previously booked in with as I’d read about them as ‘the place to go to’ in the UK for treating Lyme). I was in so much pain I couldn’t sleep, stand or sit comfortably for about a month. I also suffered trigeminal neuralgia.

Breakspear diagnosed me clinically – Dr S at Breakspear said she knew by the way I presented to her with my neck and shoulder problems that it was Lyme – and my medical history was a 100% certain diagnosis. I can still picture her apologetic face as she told me in her Danish accent ‘You really have it quite bad’. She was shocked my the level of neglect and run around I’d been given by the NHS. I subsequently had supportive blood tests – which were never used for a diagnosis, just to support a clinical presentation, and I began treatment immediately with IV ceftriaxone and a sack load of supplements. I improved immensely and then continued with oral antibiotics. Within weeks I could walk, stand upright and drive again. This aggressive antibiotic treatment continued throughout last year (2012-2013).

Now, I have made a lot of progress but I still rely on supplements and medication (pain relief mainly). I suspect there is more going on because I have good spells, but I still have really bad spells – nerve pain, myalgia, fatigue, brain fog (which worsens after long periods of concentration).  I am employed, but on reduced hours – every time I try building up my condition worsens, though I do have a very understanding employer (Ford Motor Company).

As of Dec 2013 I have returned to Breakspear to begin antibiotic medication again after relapsing. My health was pretty good in the summer (2013), but went downhill from September. My work hours have been reduced to 5 hours a day (which I am working as I write this) because of my brain fog, neurological issues, fluey type pains in my legs and flare ups (which through experience and lots of reading I know is inflammation).

Lyme Disease has had a severe impact on my life and my family. I am lucky to be here – I strongly believe that had I not read about Lyme Disease on the internet and ended up at Breakspear I would be in a wheelchair at best.

Even after all trauma above – I know I’m one of the lucky ones; I have a very supportive family, GP and a supportive employer, fantastic wife and kids – without these my life would have been totally destroyed. I’m able to lead a fairly normal life, yes it’s a struggle and it takes a lot of hard work to maintain my quality of life which continues to be a cycle of remission and relapse.

The real situation is this. Lyme Disease, or Borreliosis and the co-infections that accompany it after being bitten by an infected tick is a highly complex disease. The longer the time between the bite and the diagnosis / treatment the more difficult it is to treat. For these complex infections many other factors can also affect recovery, such as environmental toxins, heavy metal toxicity, immune dysfunction and many other body system disorders.

Unfortunately many medical professionals (in the UK and globally) hold an incredibly stubborn and ignorant view that blood tests are 100% reliable, and that the disease is easy to treat. Unfortunately this has led to possibly millions of people globally being misdiagnosed with MS, ALS, ME/CFS, PVFS, Rheumatoid Arthritis, Alzheimer’s, Parkinson’s, Autoimmune Diseases, psychiatric problems…. and has ended the lives of many prematurely, where an experienced Lyme Literate doctor would be able to return that sufferer to at least a reasonable state of health and quality of life.

There is hard scientific evidence that this bacterium (the genus Borrelia) can change form, protect itself, be resistant to antibiotics and the immune system, and lay dormant then strike again when conditions are right. Additionally there are many species of Borrelia that can be pathogenic and cause Borreliosis, but will not show the correct markers on current tests so will be deemed negative.

This modern research, by reputable scientists and universities continues to be ignored by our Department of Health enabling them to hide behind bullshit, under-reported figures. Even the CDC in the US held their hands up last year and admitted ‘shit – we’ve got a problem here‘. In the UK Lyme Disease remains an un-notifiable disease (doctors do not have to log cases of the disease) so the figures are skewed. I know hundreds of other Lyme sufferers and i’m pretty sure that none of them are included in the official figures.  

From the top down, this disinformation filters to the medical professionals who are left with their narrow minded view that they know more than their patients – even with the abundance of information at everybody’s fingertips these days. Lyme Disease is a global epidemic that is being swept under the carpet here in the UK as it continues to be in many other countries. The disgusting thing is ‘they’ know what they’re doing.  

Tony Bent

Dr Google and a New Life…

“Real knowledge is to know the extent of ones ignorance” (Albert Einstein). I thought I’d start this blog with an Einstein quote to make me come across more intelligent…

I was inspired to write this piece after reading this article that the Countess of Mar mentioned at the Public Health England Lyme Disease Conference, October 9th 2013 (name dropping my mate there). The article, with it’s sweeping statement that ‘we’d all be a lot better off without Dr Google’ niggled me, and also coined a new phrase I’d never heard before – ‘cyberchondriacs’. I guess we’ve all done it by now – felt sick, gone online, Googled our symptoms and worked out what is wrong with us prior to a GP appointment, much to their annoyance. We’ve all been warned about the internet being a minefield of misinformation which can lead to dangerous consequences when it comes to health matters and the temptation to self- diagnose. Unfortunately, when it comes to Lyme Disease, it’s the organsations that are supposed to be there to help us – the one’s that we are supposed to trust, who are largely providing this misinformation (or is it disinformation – by definition it’s the latter). So this is kind of a counter argument to explain where I would be – and I definitely would NOT be ‘a lot better off’ as the aforementioned article (which incidentally has no real evidence to support it) would claim.

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I must have seen a hundred doctors, medical students, consultants throughout 2011 – during which I was struck down with a mystery ‘viral’ illness which gave me pericarditis, myocarditis, a pericardial effusion, pleurisy, persistent fatigue, high fever and flu symptoms – which saw me hospitalised five times. I lost count the number of times I told them about my exotic travel with my job that took me to the far corners of the world, how I got sick in these faraway places, and how I hadn’t felt right since I got bitten by something back in September 2007 (make a mental note of that bit)….. The ‘viral’ diagnosis was a diagnosis of exclusion – countless blood cultures in hospital returned no bacteria, so the conclusion was viral.

In-between hospital stays I was still very sick, with numerous symptoms coming and going and then in August 2011 I was hospitalised yet again with pericarditis. This time I was treated with corticosteroids to shut down my immune system for a while. Whilst taking these I’d felt better than I had in years! I was on these pills for a couple of months before being slowly weaned off, and that was it for me. As the pain started creeping back, the all too familiar ringing in the ears, the heightened fight or flight sense and hyperacusis, the fatigue I realised that my more neurological symptoms had worsened.

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Frustrated again I was constantly looking for answers – the NHS’s Post Viral Fatigue / Chronic Fatigue Syndrome was a cop out diagnosis. I was awaiting a Rheumatologist appointment (who suspected Sarcoidosis) when the epiphany occurred…

When my noise sensitivity was getting incredibly debilitating I found it’s official name – hyperacusis. Reading about hyperacusis on Wikipedia (yes… I know…), one of the first things listed as a cause was Lyme Disease – I’d previously ruled out Lyme Disease because I’d been told time and time again I had a viral cause for all my problems (remember the blood culture’s being negative?). This time I decided to look into Lyme Disease anyway as Dr Google kept mentioning it when I asked him about my wide array of symptoms. It was then I found out that the Lyme bacteria (that is of the genus borrelia) did not reside in the blood stream like other bacteria. It’s a spiral shaped organism (known as a spirochete) that has the ability to screw through cells and organs to evade the immune system, wreaking havoc in the meantime.

The bells were ringing already but when I read about the tick bite, and speaking to my wife about the thing I pulled out of my leg 4 years previously (which I know now was a fully engorged tick attached to my leg, picked up in Langdon Hills, Essex, UK) that was it. Like this one that I pulled off my dog this summer from the same area:

I can’t tell you the elation I felt as over the coming days and weeks everything fell into place – there was absolutely no doubt now – it was so obviously late stage, Chronic Lyme Disease giving me all this trouble. Great – I’ll tell the Rheumy, get some meds and get better right?

I was already aware from reading about Lyme Disease on forums and other peoples blogs that this was not going to be straight forward. I’d had the standard blood tests for Lyme by the NHS – based on the negative results of these, they’d ruled it out. The Hospital for Tropical Diseases in London didn’t even consider Lyme because of my negative tests. The LDA told me that the tests were notoriously insensitive and I needed to see a Lyme specialist (known globally as an LLMD Lyme Literate Doctor) as there were many reasons my tests would be negative.

Armed with a wad of A4 print outs I proudly went into the Rheumy’s office, sat down, and began to tell him how I’d worked out what it was. He smiled, laughed a little and said ‘you don’t have Lyme Disease’. We had a heated exchange – but the ignorant twat would not budge. Even though I had medical journals, credible sources of information he would not see the wood for the trees. All because of his ignorance towards using the internet to research symptoms.

I spoke to a GP at my surgery who asked ‘Lyme Disease… have you been to America recently??’ Honestly the lack of knowledge at the foot soldier (GP) level is astounding. The thing is, it isn’t their fault. I truly believe GPs go into their profession with the best intentions then get moulded into an immalleable shape by the red tape of the Department of Health / NHS – and it is the DoH who are to blame for the mess we’re in in this country.

Anyway…. I half expected all this to happen but I’d read how untreated Lyme can cause serious permanent damage, and in rare cases can be fatal. My wife and I knew then that I had to seek private care urgently – so I booked into Breakspear, at the time this was the place to go for treatment (we would worry about the money later).

By the time the appointment came round, my condition had worsened as I had developed Bannwarth’s Syndrome (Lymphocytic meningoradiculitis). The month of suffering this I’ll talk about another time, but it was a dark time – extremely painful.

Without Dr Google I have no idea where I’d be. Suicide rates among those with Chronic Lyme is a big problem – but how about the rates for those mis or undiagnosed??? It’s hard to imagine how many are out there now, suffering, debilitated so bad and being fobbed off by NHS insultants misdiagnosing them with psychiatric problems (I’ve heard a lot of that by the way) – we’ll never know the real facts about this. In a way I was lucky that my symptoms were serious so my medical history is full of symptoms and conditions that even the most ignorant NHS insultant can’t deny something more than ‘cyberchondria’. Anyway, needless to say that throughout this I have never been suicidal and I never will be – I have the support of my family and friends and my employer – I am one of the lucky ones.

Even with what life has thrown at me and my wife Kate), it’s just life right? It’s a different life to what I/we had before, learning to mourn that previous life and swiftly accept the new is key to a Lyme Disease sufferer….. now from an Einstein quote at the start to a fugazi song at the end which sums up that last sentiment…

You can’t be what you were
So you better start being just what you are
You can’t be what you were
Time is now and it’s running out
You can’t be what you were
So you better start living the life
That you’re talking about
You can’t be what you were
No movement, no movement, no movement
In a bad mouth
It betrays a bad mind

Thanks for reading!!

F8 Safe Mode, fatigue and brain fog….

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F8 Safe Mode, fatigue and brain fog….

I’ve been meaning to do this for a long time. I’ve a lot to moan about, and I’ve a lot to be happy about so hopefully you’ll get something out of this. Warning in advance – my blogs will be centred around my experiences with Chronic Lyme Disease.

So my body is in safe mode. I remember reading about this analogy some time ago – when you have a chronic infection, that the body cannot easily get rid of, you reboot into a state where key survival bodily functions are protected  at the sacrifice of other less important processes. It makes you feel like shit, but you live – and reach equilibrium with the foreign invaders that your body has decided it can’t get rid of.

Throughout 2011 I was hospitalised with recurring pericarditis, pleuritis, pericardial effusions, high fever, flu symptoms….. This was diagnosed as ‘viral’ as blood cultures were persistently negative for bacterial infections – a diagnosis of exclusion. Treated with anti-inflammatories and pain relief, I would return home after these hospitalisations, which is when I noticed this new feeling slowly taking over me. Fatigue. It’s a little word, that people think they understand, that I used to think I understood too. Until you’ve suffered from real fatigue, believe me – you haven’t got a clue.

I was getting a hair cut that summer (2011) and the hairdresser said to me “Fatigue? Yeah it’s weird – I feel really tired after a hard day’s work too”. Nah mate. Fatigue is waking up in the morning aching in every muscle and bone in your body, like you’ve just run a marathon. Everything down to the tiny muscles between the joints in your fingers. Getting out of bed is a chore… you remember how waking up used to feel, refreshing – you stretch your muscles and get up and go. With fatigue you crawl out of bed and everything is a struggle. You know what type of day is coming then. ‘Walking through treacle’ is another phrase commonly used. You struggle to wash properly or do simple household chores because your muscles can’t hold your hands up for long enough.

You can’t do anything that requires effort without feeling discomfort or paying the price later. Sometimes you won’t even feel the repercussions until 1, 2, 3 days later. It’s something you manage over time, you work out what you can and can’t get away with. For me it’s a constant battle of mental vs physical. If I’m finding that my symptoms are restricting me too much, it’s easy to get down or depressed – so I’ll go out and do something that I shouldn’t, like a long walk, work on the house, throw the kids around….then all is better mentally, I’ll worry about the physical effect tomorrow.

Unfortunately for me in late summer 2011 after another stint in hospital I was treated with prednisone, an immunosuppressant steroid to treat the pericarditis. I was weaned off of this medication after a couple of months I felt the fatigue creep back in with a vengeance, and it’s at this time I think I developed neuroborreliosis – where the Lyme bacteria penetrates the brain / spinal chord and gives serious neurological symptoms (resulting in Encephalomyelitis in March 2012 – something I hope none of you ever have to experience).

For me fatigue affects the brain too –especially after the onset of neuroborreliosis. Most Lymies suffer from ‘brain fog’ – this feeling is so hard to describe…. It’s a kind of dizzy feeling where everything has slowed down – you struggle to talk for long periods as you can’t process the words quick enough. Simple calculations seem like advanced calculus. It’s a kind of hang over feeling but without the satisfaction of making an arse of yourself the night before. For me – pushing this mental fatigue to the limit ends up in total mental breakdown. I remember the first time it happened, before my Lyme diagnosis – I was attempting to return to work after being off sick for 6 months. The tasks I used to at work (I won’t bore you with the details) were all of a sudden beyond me, it was very hard to recall things stored in my brain somewhere – like trying to run GTA5 on a ZX81…. Confused by this my brain fog would spiral out of control, my already present noise sensitivity got acutely worse so that distant conversations couldn’t be filtered out – a heightened fight or flight response. I had visual disturbances where my brain couldn’t process the images my eyes were sending my brain – the final result being tears, going home and hiding under the bed covers until it passed. This happened a few times to me until I understood what I was dealing with (most embarrassing was in the middle of Lakeside shopping centre with my wife Kate and baby daughter Rosie – who was born amongst all this going on in June 2011).

After my diagnosis, LOTS of reading and research and meeting people in the same fucked up situation as you (I’ll get to that another time –but let’s just say for now that you cannot believe the anger that burns down inside of me) I worked out that pushing yourself to this threshold of being counterproductive is a skill you develop as you want to feel better, you want some quality of life, but you don’t want to go backwards. I’m convinced that pushing myself in this way has speeded up my recovery.

It’s now nearly November 2013. My physical fatigue has improved – I can pretty much do anything that a ‘normal’ person can do, apart from cardiovascular (my diagnosed cardio accelerator problem is a bit of an issue – my SNS is a bit screwed, something called Dysautonomia). Days out with the wife & kids, playing in my band, walking the dog – all things that mean a lot to me, I’m grateful to be able to do.

Mentally though, it’s still a struggle. I was doing very well in the summer, but have taken another downturn recently – currently I’m disappointed that I can’t seem to do more than 4-5 hours’ work without my brain fog spiralling down again. I’m grateful to have not had any serious symptoms for 18 months – and by serious I mean pain like you wouldn’t believe, trigeminal neuralgia, pericarditis, pleurisy, encephalitis, myelitis….. Lyme at its worst can wreak havoc.

They say what doesn’t kill you makes you stronger. When it comes to Lyme Disease, I say that’s bollocks.

Shit, this turned into more of a rant than a blog….

Anyway….. this bit is for the Lymies who are struggling. Someone told me when I started treatment that this would be a long journey – and it’s one you just can’t prepare for – when it’s going well you think ‘YES!! I’ve finally made it’, when it’s going bad you think ‘SHIT!! I’ve not made any progress at all – AARRGGHHH!!!’… but this is how I see it; my chart below is a rough plot of my health over time – starting from the tick bite & EM rash, steadily going downhill until my serious (aforementioned) problems started. The important bit is the red line – which starts at my diagnosis and treatment, it’s a trend line that (after the initial herxing) has a positive gradient (for all you maths fans out there *high five*).

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Thanks for reading – more soon!