Still confused - Lyme, Lupus, something else?
Apologies for the long post....
• Almost constantly light-headed and dizzy which sometimes becomes more intense
• chest pain, stabbing pains in left shoulder, pains in left upper arm, numbness in left arm
• sleep apnoea, waking gasping for breath, waking feeling like the upper part of my lungs are empty, upper chest aches
• pins and needles in left foot and hand
• impaired consciousness and confusion
• constant ringing in ears
• balance problems, feeling like the floor is moving around when I walk, feeling like I am falling when seated
• sweating and feeling breathless
• cold hands and feet
• feeling weak and shaky
• Stiff aching muscles and joints
I have had these symptoms for around 10 years and they have progressively worsened. Over the past 5 years I have developed a lot of anxiety and have had panic attacks and find it very difficult now to relax and am constantly nervous. This nervousness wasn’t there initially with the other symptoms.
I first had symptoms around 12 years ago after spending a day walking around Edale (about 6-7 hours walking). When I got back to the campsite I felt really dizzy and confused and not fully conscious. I lay down and felt worse, as though I was about to pass out, the only way I can describe it is the feeling you get when you have drunk too much and the room is spinning. I was getting tunnel vision and I felt as though I really had to fight to stay conscious.
Around 10 years I was walking to work because I was without a car due to a crash. It was a long walk uphill for around 45 mins. When I was sat at work I suddenly felt as though I was falling backwards off my chair. I also got the same falling kind of feeling you sometimes get when you are falling asleep like losing consciousness. These feelings only lasted a few seconds and I seemed to be able to snap myself out of it. About 2 or 3 weeks after these symptoms I had a really bad dizzy spell, I just felt like I was losing consciousness, felt really confused and scared. This lasted for a few hours. I went home and went to bed for about a week, feeling like I had flu or something. Really weak and shaky and cold and dizzy.
I have also had a lot of chest pain which I first noticed at around age 18 when running for a bus. I also experienced severe chest pain when playing football and running for any distance (all in my early 20’s). I also get frequent pains in my left shoulder, left arm and jaw and tingling in my left hand.
After the first spell of light-headedness I had occasional bouts of dizziness and feeling unsteady on my feet but eventually seemed to return to some normality although I never really felt ‘right’.
A year or so later I started getting dizziness along with feeling flu like symptoms. I could usually tell in the morning if I was going to have a bad day, just a feeling. My symptoms then started with cold feet and lower legs and just feeling generally grotty.
Since then it seem like I have a constant level of dizziness which never really goes away.
I have been to the Emergency Dept about 7 or 8 times over the years because I have felt so bad like I was about to pass out.
I have lost jobs and relationships due to my symptoms.
My symptoms seem to be getting more frequent these days and lasting for much longer periods of time. I have this constant dizziness and light-headedness, as though I am about to pass out, and worse still this feeling of being unreal, dreamlike, numb, somehow detached from reality.
I used to be quite sociable and I like the outdoors life and going to the gym etc, but now I am scared to go anywhere. Looking back, when I used to go out cycling I used to get left shoulder pain but always put it down to my riding position. I also remember going to the gym for the first time when I was around 23. I did a work out, then about 10 mins later at the bus stop I had a really severe stabbing chest pain along with a feeling of extreme dizziness which lasted a few seconds.
Last time I went a decent walk I got the same symptoms again, feeling like I was passing out and feeling numb
I feel terrible 99% of the time and my GP doesn’t seem interested in my symptoms or how scared I am.
During this time I have been checked for Marfans Syndrome
I recently saw a neurologist who suggested I may be suffering from Basilar Artery Migraine. He put me on beta blockers which seemed to help a little bit for a while but then I think I passed out, I was so scared I went to the Emergency dept who said there was nothing wrong with me. I went to see my GP and he took me off the beta blockers.
I went to see a cardiologist and got another tilt test which proved negative. I have had ECG’s, blood tests, exercise tests and echoes of my heart, and tilt tests for blood pressure.
I went to see a specialist in dizziness around 4 years ago but nothing seemed to come of it apart from them finding arteriosclerosis in my neck and near my left collarbone. The specialist seemed to think that while I was fairly young to have it, it shouldn’t cause my symptoms
I have also been to see an ENT and have had balance tests which seemed negative
I took it upon myself to get tested for Lyme disease and went to Breakspear in Hemel Hempstead in May 2012. The consultant there suggested it might be Lyme, so I had my blood taken and sent off for analysis
The results were
Melisa test to ascertain Lyme borreliosis – positive to Borrelia burgdorferi
Lyme lgG/lgM Serology – negative
Lyme lgM Western Blot – positive
They suggested a treatment of strong antibiotics
I was slightly unclear about the findings, so I went to see an NHS doctor of infectious diseases. He basically told me he didn’t think it was Lyme, as far as I could tell because he has some problem with the Breakspear clinic. He mentioned the laboratories they used being not verified. However, when I checked, both clinics are regarded very highly.
He then proceeded to tell me about chronic fatigue syndrome, which I find hard to believe due to the diverse nature of my symptoms and the length of time I have had them.
So now I have 2 doctors telling me different stories and I don’t know what to do. I still have no treatment and still feel very ill.