THE LONG ROAD TO DIAGNOSIS
By Benen Smyth
Benen Smyth, Kinvara, Co. Galway. Ireland.
When I was diagnosed I had never heard of Lyme disease. Never realised the devastation a Tick Bite could do to a healthy man. I never remember a tick bite & never took a tick out of myself less than 50% of people do.
I became ill end of August 2006; it started with a pinch like feel on my instep on my right leg, which gradually got worse A couple of days later the foot began to swell and I had shooting pains from foot to knee, I went to his local A+E department in UH, it was the start of a journey six times in all between 7/9/06 to 2/10/06 when I was hospitalized unable to walk or lift my arm.
The casualty doctor referred me to orthopedic outpatients at Merlin Park hospital where he saw Registrar he referred me back to UH for vascular scan & to eliminate a clot in the leg.
At this stage we had holidays planned & wanted to get go ahead and for to rest and put his leg up. We did take their advice and had a holiday from hell, Doctors, Hospital, Specialists, X-Rays pain medication. On the advice of specialists/doctors in Puerto Rico I contacted my GP and on our return went straight to her.
Back to A&E once again referred to Merlin Park Hospital, Dr xxx Registrar was on duty, (he was the doctor who had had x-rayed the leg previously). He could not believe the deterioration in my condition and admitted me to hospital straight away. At this time I was in a lot of pain and had very little power in leg and was beginning to loose power in right upper arm, and lower leg. I was admitted under an Orthopedic Specialist, who straightaway contacted a Neurologist. I spend 6 days under Orthopedic Surgeon while waiting for a bed in UCHG under Neurologist
Dr xxx Neurologist in UCHG diagnosed me in November 2006 with Chronic Neurological Condition (Neuroborreliosis). I spent 7 weeks in hospital; underwent intensive investigation e.g. MRI scans, nerve biopsy, CT scan on spine, nerve biopsy, multiple blood investigation and Lumbar puncture where antibodies were found in CSF. Before a clinical diagnosis was made. I was on intravenous ceftriaxone antibiotics for 30 days, 14 days after diagnoses in UCHG and a further 16 days when I came home from hospital. I was put on pain management Programme for nerve pain which I am still on (May 2019)
I was a case study in UH “Perineuritis in Acute Lyme Neuroborreliosis”
Chronic Neuroborreliosis Lyme has left me with:
Diseased nerves on his right lower leg and foot and right upper arm.
Diseased nerve in right shoulder upper arm, resulting from this I have weakness on right upper arm and shoulder, unable to reach out and hold objects in his right, severe shake in his hand, muscle wastage on my right shoulder arm, and right leg from foot to knee. Through intensive physiotherapy I have got most of power back in arm.
Right lower leg and foot has a lot of nerve damage resulting in Foot Drop (no feeling or control of right foot) also numbness in right leg and foot.
Leg swells, chronic tiredness, lack of concentration and sleepiness, pain in my joint and muscle, nerve pain in these extremities, and a dropped foot.
Unable to work and has not worked since late August 2006 and now retirement age I have lost 12 years of my working life & 12 years of my pension, missed many family occasions births, celebrations, weddings even funerals.
The Neurologist told me that my condition will not get any better and that the harm that was done to my nervous system due to the delay in diagnoses of the Lyme disease will be permanent. Late stage patients with neurological manifestations may have complicated, especially if the disease is in the late chronic persistent stage especially when they involve CNS infections.
Looking back over the years and trying to figure out when/if I got a tick bite and where we were in around July 2001. My (rash), which we now know, was misdiagnosed in research we have learned that people’s symptoms can re occur in cycles and can flare up after months or years. Also that the rash also can be allergic reaction to Tick Saliva.
So we have to ask where I was in July 01 when all my medical problem began. First visit to GP in July he had large red lumps/spots on his felt arm, I woke up on July 26th lumps on back of neck, forehead, below left eye, right shoulder, right wrist. I took prescription on that day around 2.30 by 10.45 spots were nearly gone, but he was left very tired after that episode. At this time our GP referred us to a Consultant Dermatologist in Bon Secour Hospital Galway, she had tests done 12/9/01. The rash was visible, she told me at this time that she felt that he was at the end of the urticaria and that it would probably just ware away.
My GP had given e a prescription for a course of antihistamines and steroids. I had a couple of very bad recurring episodes one in particular when our GP was going to hospitalize me for very low blood pressure, I was monitored at home and within a few hours when he took antihistamine and steroids my symptoms wore away, but I would be left very tired over next 7 to 10 days. Occasionally through next 3 years I got bouts of the E.M., but always the antihistamines and rest would help too realize his symptoms.
Late 2004 I started having funny feelings in his upper right arm he describes it as a weakness he did get a few physiotherapy. He also had sessions with chiropractor 3 sessions weekly he had approx 22 sessions, he felt after this time there was no great improvement so he decided to get some physiotherapy on his arm, this did help for a short time he had deep message. I even went down the road of alternative medicine and had Vega testing done for allergies. The arm continued to be weak he always knew that things just weren’t right with it, I learned to live with it and compensate using left arm where possible.
April 2006 I had cold symptoms viral like infection tired, sore throat, even after taking full course of antibiotics still felt unwell, tired, and with a persistent cough that lasted for weeks.
Then my condition really kicked off in August 2006, when I started to feel a pinch on his instep in his right leg.
Original Symptoms:
Shooting pain on right leg from ankle to knee (numbness in right leg and foot) sole of foot numb but with a very cold feeling (like it’s a block of ice) and highly sensitive to touch, Leg swelling, weakness in right shoulder when reaching outwards unable to pull back in e.g. reach for glass water unable to bring hand and glass back in towards chest, fatigue, flu symptoms,
August 2006 right foot pinch like feeling on instep, instep started to go numb, leg swelled, felt generally unwell. (29-30 August 2006) after 1 week went out sick from work 6th September and attended our local casualty department in UCHG on 7th September, I never returned to work (April 2019)
Through the years I’ve been unwell under several consultants, thousands of euro, I had a diagnoses & was treated for prostate cancer, I now have bladder issues & Arthritis alongside my Neuroborreliosis!
Myself & my wife Mary raise awareness in our local communities we are volunteers with Tick Talk Ireland an Awareness Group.