Lorraine's Story

I'm Lorraine from Montrose, North East Scotland. I was bitten by a tick end of August 2014.  I remember the date clearly as at the time I became ill I was away celebrating my 10th year Wedding Anniversary with my Husband, I spent 4 days in a hotel room bed unable to move. A few days beforehand, I had a little black thing at the top of my leg but I hadn’t realised it was a tick. I did not have a bulls-eye rash, but was completely exhausted with flu like symptoms, high temperature, exhaustion, random stabbing pains and feverish.  I returned home and went to the doctor, who told me it was the flu. I did recover from this briefly but never fully.

From that date, every month I developed this same flu like feeling and then other symptoms started creeping in also between these bouts like ear and eye sensitivities, chills, fever, sweating, and I suddenly started having difficulty walking. That’s when I knew something was very wrong as up until the point when it all started I had been running Olympic distance triathlons and was above average fitness (that’s a 1 mile swim, 26 mile bike ride followed by a 6 mile run). Some change: now I struggled to walk my dog!

I went to the doctor again with all these other symptoms and again I was told the flu. In fact I was told this for 6 months running!  When I questioned this I was told “I was just unlucky”. Like a lot of other sufferers I just had to go home and rest.

For 9 months I held down my business, rescheduling appointments around the 'better days'. However those were fast disappearing and I had to close and stop working as I was just too exhausted.

That’s when things took a turn for the worse. Around the 9 month mark I had severe heart symptoms - my heart would just speed up with no warning. This lasted a few weeks and was again misdiagnosed as a panic attack.

The symptoms just kept increasing. I had a stiff neck, tingling legs, buzzing sensations (felt like an army of ants were running up and down inside my legs). It was really painful, day sweats, night sweats, struggling for a breath, mood swings, twitching muscles and I could sleep 18 plus hours a day and it still wasn’t enough, all on top of feeling this flu thing and a feeling like I had a permanent hangover without any alcohol.  I thought I was going to die I really did!

I remember having about 80 symptoms that were really bothersome and taking it all to the doctor.  The doctors would glance at my bits of paper but couldn’t relate it to anything, all my blood tests came back normal, and I was told there was nothing obvious wrong with me and I was handed a piece of paper and diagnosed with Chronic Fatigue Syndrome (CFS) or ME with no known cause.  A few months later I developed really low blood pressure along with everything else and frequently collapsed in my house in front of my kids. I was also now permanently dizzy.   I was admitted to hospital with this and let out the next day with my mother's help.  No treatment given for blood pressure as it was CFS causing it?

Fast forward to the 18 month mark, when a good friend had seen a TV programme on Lyme disease spreading awareness.  I watched it and that’s when I had the light bulb moment.  I suddenly realised that I could possibly be suffering from it.

My NHS Lyme disease test came back negative, I was told I didn’t have it.  However, I researched Lyme disease symptoms online and as the vast majority applied to me I took it to my GP, who gave me a clinical diagnosis of Lyme Disease and referred to Infectious disease in Ninewells.

This appointment took 8 weeks to come through. I started on oral antibiotics. I was feeling no better as no one told me when you start the treatment for Lyme disease you will suffer from what they call Jarisch Herxheimer reactions which is an overload of toxins released from killing all the bacteria.  This can be severe.

I was offered a Lumber puncture and a western blot of which again both came back negative. No further treatment was given and I was told I had post Lyme disease symptoms!

I sourced a private clinic and further testing in England and I came back positive for 3 different species of borrelia, all very active!

Fast forward a year, I did more testing through Igenex in California and I now have a diagnosis of Lyme disease and other bacteria and parasites (all from the same tick bite).  I am now treating Lyme disease, babesia microti, bartonella henselae and ehrichliosis. I have found a private clinic that specialises in treating all these infections, all private treatment we have funded ourselves as we are left with no choice.