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One author suffered pain until he had suicidal thoughts because his Lyme disease had been misdiagnosed for two years.
Andrew McGuinness, 52, was wrongly taught that he was suffering from multiple sclerosis, a brain tumor and even that he had been a victim of two strokes.
In reality, he had been bitten by a tick and contracted Lyme disease.
It would be two painful years before he discovered it.
The author of Whitstable, Kent, said, "Often, people with Lyme disease are misdiagnosed because many of the symptoms are identical to those of colds or flu.
"My wrong diagnosis changed my life. All the time, nobody knew what it was.
Andrew lost his ability to read and write and was forced to give up his lecturer position at Kent University, while the bacterial infection seized his body.
There was so little awareness of Lyme disease, even among health professionals, that Andrew's was finally diagnosed after searching online.
In 2010, Andrew noticed a strange skin rash initially diagnosed as cellulitis, a skin condition contracted by an insect bite.
A few weeks later, he began to develop other symptoms that he put under fire from the weather or from the flu.
But instead of lasting a few days, the illnesses would last for weeks.
He said, "I remember being in a supermarket with my wife and almost fainting. I had a fever and I was always exhausted. & # 39;
Then he began to suffer from a stiff and painful neck. He now knows that it is at that time that Lyme disease has infected his cerebrospinal fluid, a bacterium entering his brain and attacking his central nervous system.
But he was told to take painkillers and that he would eventually return to a normal life.
The most extreme reaction occurred about a year after the initial diagnosis of cellulitis, when Andrew suddenly lost sensation in the left half of his body.
He said, "I went completely numb to one side. I was absolutely terrified.
"In fact, I was so terrified that I did not even warn my wife for several hours before thinking it might be something very serious.
"She rushed me to A & E and they said you had a stroke."
Andrew received an anticoagulant and was finally sent home, but seven days later, the same thing happened.
He said: "The other half has become numb. They said "you had another shot". I thought "I could not survive this".
But after several tests and checks, the doctors began to realize that a stroke was not behind the sudden numbness.
Instead, he was seen by neurologists, who began to suspect that Andrew might have multiple sclerosis.
"They did a lot of testing and MS was never explicitly mentioned, but I knew what they were tested for."
When the tests revealed swelling of his brain, Andrew was diagnosed with the fear he had.
He said: "I was devastated. My sister-in-law had multiple sclerosis and I had seen her condition deteriorate. I knew that being diagnosed as a man in his forties probably meant that it would happen fairly quickly.
"I badumed the worst, I saw myself disabled. In fact, it made me very, very depressed. '
But confusion continued when his MS meds made him sicker and he was told that he was not suffering from this disease after all.
Andrew said, "When I stopped treatment for multiple sclerosis, I really thought I had nowhere to go with that.
"Finally, I went online and did my own research, which led to Lyme disease.
"Until then, my symptoms had been treated individually by different doctors – there was no communication or connection between the symptoms.
"It suddenly became obvious that they were all connected."
According to official estimates, the number of cases of Lyme disease in the United Kingdom is around 2000 – but a new study reveals that the actual number of people with the disease could be closer to 8,000.
Lyme disease has been detected in all parts of the United Kingdom, especially in Scotland and southern England.
The researchers hope the new numbers will raise awareness, as early intervention could prevent some of Andrew's long-term problems.
He said: "If the first time I was diagnosed, I would have received antibiotics, which would have disappeared."
Instead, he said he did not know what was wrong with him had left him feeling suicidal.
He said: "I felt incredibly angry and frustrated.The general practitioner and the NHS m against me a lot to want to treat Lyme and find out more about it."
Andrew is still suffering from fatigue and has a constant feeling that his hands are burning, taking powerful medications every day that are prescribed to people with epilepsy.
He spent four years writing a semi-autobiographical novel about his experience in the hope that it would help others avoid the suffering he suffered.
The author stated, "My main feeling is that I wanted people to know that a diagnosis of Lyme disease does not mean that your life is over.
"I'm so happy that it helped others learn more about the disease and helped others with Lyme disease.
"It's a question of awareness. We need to educate as many people as possible, which is obviously much more common than expected. "
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