By June, 2007, my health had worsened to such a degree that I was confined to bed for days on end.
Over the years I have developed a total phobia of hospitals, due to the poor attitude shown by the NHS doctors and their complete lack of treatment. I had seen many doctors but there was no diagnosis, except for possible epilepsy. Most of the symptoms had landed on me at the same time. For about fifteen days I felt as though I was dying! All the doctors would say was, “We don't know, have you seen a shrink?”
I have now offered to see one, if only to prove that I'm not ill because I'm crazy, but that I'm crazy because I'm ill. Lyme Disease destroys your immune system, and because it is an organic illness it causes mental problems, rages, and mood swings, etc. due to the physical underlying cause. I feel as though I'm on a permanent bad trip! Pure evil.
After that fifteen-day spell in June, 2007 I seemed to regain what I had feared would not happen--a kind of remission. I had changed gyms by this time because I felt there was not enough cardio exercise at my old gym. I became addicted to spinning classes, doing two classes five days a week, along with body pump, bar with weights, and so on. Feeling fitter than I had ever felt-–or so I thought-–I carried on this regime for four weeks. During my last week in the gym, I felt extremely ill. My muscle and heart pains were so bad that my face went as white as if someone had painted it.
I was ill, but I didn't know how ill. By late September, 2007 I had deteriorated again. I could not move or talk properly and everywhere in my body there was pain. Then on one occasion I suffered a massive seizure. My heart stopped, and my friend, a staff nurse--knowing the seriousness of the situation--called 999.
Arghh! Waking up in the hospital AGAIN I was angry but too ill to argue. I realise she had no choice though, because I was virtually dead! Unfortunately, yet again, although my friend explained that we thought I had Lyme, the doctors said that they don't treat it.
I came home so extremely ill that I realised it had finally got me, and that there was no bouncing back this time. Desperate to find answers as to what on earth was the matter and find some urgent help, I looked on the internet and typed in these words: “Help!! Lyme disease.” This produced a web blog written by a lady called Bettine. I emailed her and was so excited to receive a reply asking if I was from the UK or USA (Lyme is even more rife in the USA) and she gave me some guidance as to the experts in the field. Hope maybe?
My son, who is my brick–-I would not be here now except for him--booked an appointment for the 30th September, 2007 and off we went to see Professor Daymond, a Lyme-literate Doctor. During the examination I felt awful. I felt as if something was crawling under my skin, but little did I know what it was. YUK! I was convinced he was going to say I had an allergy because I had once had an allergic reaction. Instead he said, “You have Neurological Lyme disease”.
I slumped in the chair and felt like death! The crawling under my skin was what I now know to be millions of parasites. I asked him if I was having a psychological reaction. I knew far too much about this disease to want it to be that, but he said, “No your body cannot cope with stress and the Lyme loves it."
He went on to tell me that the only reason I had lasted this long was because I was so fit. Exercise helps with Lyme. It gets the parasites out of their hiding places, i.e., the heart, the brain, and other organs, into normal blood flow. But then he told me I was killing myself doing so much as my exercise was all cardio-based! By this time I wanted to die, there and then. I knew the prognosis for this thing, and it wasn't good. He started me on a course of antibiotics immediately.
The return home was horrendous due to a Herxheimer Reaction, and I had yet another massive seizure later that night. In the past I had suffered seizures but I kept quiet about them-–unless it happened in company and then I had no choice. By now my family and friends knew not to call 999 as they have seen how I have been treated. I have made them promise not to call, but to let me die. Silly as it sounds I am more afraid of hospitals than of dying. Since then I have learnt that all people with Lyme have the same fear.
On my umpteenth trip to A&E the doctor, now knowing I had Lyme, said, “Go home and take your antibiotics, and you will be back in the pub in two weeks. Now can we escort you out of the building?" I was not going to make a scene. I was too ill to say or do anything except what I was told. Maybe if I had been addicted to something I would have received better treatment, but that did not shock me. While being escorted out, I overheard the doctor bad-mouthing me to a colleague who replied, "My mum has Lyme." I wanted to hang around and hear that criminal doctor's response but I was far too ill for that. You see, even if the doctors do acknowledge Lyme disease they think it is curable by treating it with a 28-day course of tablets. Not so.
In March 2009 with funds raised, I was privately fitted with a Hickman line (a catheter directly into the heart). I started IV treatment of Ceftriaxone. This was very tough. But the one drug is not enough by far; I need to be treated by a combination of drugs to tackle the Lyme and co-infections.
In May, my personal friend, a dentist, called a consultant at the hospital to ask why I could not be treated. With much persuasion and a letter from the professor who diagnosed me, I was reluctantly given three month's antibiotic treatment, funded by the NHS. On one occasion my brother attended to speak to the doctor, with the aim of asking why this treatment had to stop when it was so obvious that I was still very unwell. It was a pointless exercise, to say the least. I had called the bluff of that same doctor when I asked, “So am I OK to be a blood donor now?” His reply was the most shocking of all! He said, "Yes, Lyme is not passed on in the blood.” Any doctor who knows anything about an infectious disease should know that although parasites hide, they can be passed on in blood! Hence many out there with the wrong diagnosis may still be donating blood.
Things have steadily worsened. I am now housebound 99% of the time. Occasional trips out to son's or mum's in their car mess with my head to such an extent I cannot bear it. Not only due to the pain, the weakness, and the fear, but also the noise. A car driving past my window is like a deafening roar. I find it difficult to go down the stairs most of the time, even calling or seeing friends and family is a painful experience.
Yvonne Forey, England