"Lyme Disease misdiagnosed as MS"

About: Halton and St Helens PCT The Royal Liverpool University Hospital

(as the patient),

I have been diagnosed with MS. But there is evidence that I have Lyme disease instead – I remember having a red circular rash on my arm a couple of months before the symptoms started, and when I realised what the rash meant (some two years later) I took my pet cat – a feral animal I had taken in a couple of months before I noticed the rash – to the vet and she tested positive for Lyme disease.

All of my symptoms are consistent with Lyme disease – it began with massive pressure in my head, facial numbness, a temperature of 104, and over the years I’ve had everything from joint pains to uncontrollable vomiting and nausea, psychological problems, swelling in my neck, difficulty getting my words out, cognitive difficulties similar to alzheimers (forgetting where I am, being confused), numbness, loss of motor control, visual disturbances like double vision, my eyes looking in different directions, the world constantly moving downwards, dizziness, vertigo, loss of balance – none of which I had prior to the red circular rash on my arm, and ALL of which I had at various times within a year of getting the rash. I have seen several doctors, but no one who is experienced or seems even familiar with Lyme Disease beyond the very superficial.

I was given 4 weeks ceftriaxone in 2002, two years into the disease, and by day 12 all my symptoms had cleared up. The doctors continued to tell me I was deluded and said that any improvements were ‘the placebo effect’. They told me that this was the only time I would be given antibiotics. The effects lasted only for 6 months, and by January 2003 I was getting symptoms again. The last infectious disease specialist I saw around this time said to me that I might be right, but since I tested negative for Lyme, how could they know the antibiotics were working?

In 2009, I was tested for iron deficiency and found to have low ferritin levels, and was prescribed iron supplements, which brought on a massive attack, and I started to have more frequent attacks which continues to this day. I believe this suggests Babesia co-infection, but both the GPs I have seen in this time have not seemed to be aware of the effect of iron supplementation on certain infections. I have not to my knowledge to date been tested for Babesia. I have not been given the actual results of the Lyme tests that were performed, and when I asked to see the MRI scan that led to what I believe is the misdiagnosis of MS, I was told that it had ‘been lost’.

I have been offered MS drugs, basically interferons, which I believe would have no effect (or possibly a deleterious effect), and although a couple of GPs have said to me that they think I’m right, they have said that they have no idea how to find a suitable Lyme Disease specialist to treat me and that I would probably have to go private. I had to give up my job, and indeed my entire life, because of how unpredictable this disease is and how sick it makes me, and I do not have money for private healthcare.

I desperately need long-term antibiotics and a doctor who is experienced in treating Lyme Disease, and I feel that I am constantly ignored and given no choice, no say, no real reasons why antibiotics are being withheld from me, no real reasons why a diagnosis of MS (‘an umbrella term for some symptoms, not an actual disease’ as my MS specialist said to me) rather than a diagnosis of Lyme Disease which is consistent with the symptoms, the circumstances, and the evidence of the remembered erythema migrans rash and the Lyme-positive pet cat.

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