Hi Tambone,
I'm sorry you are experiencing such a combination of symptoms and frustrations with doctors. I can really relate, as I've been through the same, with all the symptoms you list and more. I first noticed something was "wrong" around the same time as you state, spring/summer of '07.
I went through a lengthy time of going from doctor to doctor, refusing to give up as my "mystery illness" continued to creep in and take more away from me. I thought I was tested very thoroughly for all of the MS mimics, but over time, I realized that was not true.
My regular physician, my neurologists (4 in all), and my rheumatologist all assured me that I didn't have Lyme. I had two ELISA tests, the blood screen for Lyme, that were both negative. I had a lumbar puncture, and my spinal fluid also tested negative for Lyme. I never recall a tick bite in my life, and do not engage in outdoors activities. I also never had the classic "bulls eye" rash, and for about a year my sickness had mainly neurological symptoms that were not typical of early Lyme. I was never given a Western blot, the more accurate test for Lyme, because it is standard practice to only perform them on patients with positive ELISAs. I went so far as to request a Western blot, but my physician refused, based on her opinion that I could not have Lyme.
I was told to repeat my brain MRI, which was abnormal but too non-specific for a diagnosis, every 6 months and to hope for the best. I knew whatever I had was already "full blown," so it made no sense to me that more time was needed. I had become too sick to work full time, to properly care for my home, and was slowly and painfully declining.
Though undiagnosed, my physician put me on a 15 day course of oral steroids. I declined this treatment for months, but finally gave in when I came under too many deadlines at work and felt desparate. The steroids offered a very short term reprieve, but within two weeks all of my problems returned, and then spread and worsened.
Finally, enough people in my life came forward and prodded me to reconsider Lyme. Sadly, Lyme is a contested disease. By that I mean, from how to test for it, to how to treat it, and everything inbetween, there is widespread disagreement in the medical community. Along with Lyme, ticks can transmit other illnesses, called co-infections. The presentation, rashes, and symptoms vary, and they too are very difficult to test for. This further complicates getting a diagnosis and proper treatment, as the co-infections do not all respond to the same antibiotic therapy that Lyme does and cause confusion in symptoms.
In Dec. '08, I got myself to a "Lyme Literate" doctor (often referred to as "LLMDs," these doctors have practices dedicated to diagnosing and treating Lyme in complicated cases). I was diagnosed with Lyme through an Igenex Western blot and 2 co-infections based on blood work, history, and symptoms. I've been in treatment for about 7 weeks. It's been, and still is, a bumpy ride. But I am improving.
In my opinion, your list of symptoms and test results thus far raise a red flag for tick bourne diseases. If you want more adivce, please check out the Lyme forum here on MedHelp:
http://www.medhelp.org/forums/show/148
My regular physician's strong denial that I could have Lyme, along with the *completely inappropriate* use of steroids, confused me and caused my infections to worsen. The longer these illnesses go untreated, the longer and more complicated the treatment becomes. It was only through my LLMD that I made progress with my health.
I would also urge you to watch the trailer for the documentary "Under Our Skin" and to look at the online material for "Cure Unknown" by Pamela Weintraub. Both have websites that you can easily find by searching the titles.
Take care, and be well.