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Hi all,
I am a bit of an enigma to my doctors and consultant. For many years I have been through the medical treadmill of trying to find answers as to whats wrong with me. I have had numerous possibilities thrown into the pot, MS, Brain Tumor,
fibro, so on and on, right now I am under investigation for Lupus. I went to a private consultant and paid for tests to be done for SLE etc. Today I had a letter from my consultant with the results of the tests, wich unless your a biochemist, I don't have a hope in hell of interpreting them.
I would like to go back for a moment and explain, firstly I have a positive Lumbar puncture, Oligoclonal bands were found to be present in both my CSF and Serum. Because the O bands were in my serum aswel, MS has totally been ruled out. So even though its positive, they don't know what its positive for, my neuro said it could just be an infection!!!! I then had a Lymes test done and that was borderline, they did it again, it came back negative.
I have numerous symptoms, but because the symptoms of Lymes and Lupus can be similar in some aspects I am in limbo here.
When I read my results today, the Lupus anticoagulant came back negative, my DNA Double stranded Abs ELISA said <10.
The Cardiolipin Ab IgG 7.9
The cardiolipin Ab IgM 7.8........what does this mean?
Before I go any further I do realise I am posting on a Lymes board here but I am still suspecting I have Lymes. I am not anemic, however my Iron levels are terribly low.
I have what I call Flares and have ended up in emergency (ER) more times than I care to remember. I am told each time it looks inflammatory but we just don't know.
I have become ALOT worse since last November. Physically there are days, or weeks when I am just so ill. I suffer terrible gastro problems and I become alot worse before my menstrual cycle.
Last month I suffered a physcotic episode, this has NEVER happened to me before and it came from knowhere. I had been quite low for many months due to feeling permanently ill and being told by my neuro I should just think myself well, this didn't help, but I am rational enough to know he is a very limited arrogant man and obviously has tunnel vision.
However, I told my GP I felt low and he put me on Prozac, 3 weeks into it I flipped. I tried to kill myself and became paranoid and manic. I was immediatly admitted to a physciatric ward for my own safety, they took me off the Prozac, but said I have suffered a breakdown.
The emotional scars of that episode will be with me for a long time and I am trying to take each day as it literally comes.
I get a fair amount of urinary infections, I get chest infections, however I CANNOT tolerate the antibiotics I am always given for them. I usually get to around 3 days and thats it, the trouble starts. I vommit, get diorea (can't spell that word!)....and I just want to die, I feel so ill. Im getting cluster headaches again, Iv lost two stone in weight in two months. keep describing what I call brain fog to my GP, thats the only way I can describe it, its awful, but he says he just doesnt know what to give me for that.
My GP is fantastic and says any phscological issues I have are secondary to the primary cause, my neuro thinks its all in my head.
I don't know what to do now or what to think. Any help on the above test results would help me greatly, although I do appreciate they were done under the umbrella of Lupus. All other basic bloodwork was normal.
Thanks to anyone who reads this and appologies for my bad spelling.





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