HealthBoards (
-   Lyme Disease (
-   -   Still confused - Lyme, Lupus, something else? (

jools182 12-25-2012 05:54 AM

Still confused - Lyme, Lupus, something else?
Apologies for the long post....

General symptoms

• 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.

jenj770 12-25-2012 06:54 AM

Re: Still confused - Lyme, Lupus, something else?
If you tested positive for lyme (and with your symptoms!) then you have lyme. You need to find a qualified lyme specialist, an LLMD - lyme literate medical doctor - to treat you. From what I understand from past posts from people living abroad, this is very hard to come by. These other docs you have been seeing do not understand lyme disease; therefore, they are not in a position to advise you about your symptoms.

Clinical symptoms are the primary means of diagnosis, testing is secondary as many people test negative who are actually positive. That you have both clinical symptoms and positive testing I would not delay any longer in trying to find a practitioner. You may have to travel to get proper care, unless there is someone in your area, but this would be well worth it. If you haven't already, you might read the sticky post above titled Lyme Newbies.

I hope you can find the help you need soon.

All the best with this,


All times are GMT -7. The time now is 10:26 PM.