Hi lplancher, welcome to the board!
I am sorry you have had symptoms for so long. From what I understand, a spinal tap shows Lyme in less than 5% of cases so you were lucky it showed up there. This test is not typically ordered to test for Lyme.
What antibiotics and doses are you taking? Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possiblity, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Please make sure you are getting properly treated or the infection will not be eradicated. The doctor you mentioned does not overtreat, he is well-respected just like Dr. B. is.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Were you tested for the co-infections? If you need a doctor recommendation, you can email me at email@example.com
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne lllnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. He discusses antibiotics and doses starting on page 18. I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.
Good luck with your treatment!