Hi, I am new here and I was just diagnosed with neurological Lymes and I am lost as to where to go. I live in Suffolk County on Long Island but I am willing to travel for a good doctor. My PCP has no clue how to treat me and wants me to go to a neurologist but I think that might be a waste of time. Any help would be great.
Tina... Welcome.. I also live in Suffolk (as well as a couple others on this board).. Dont go to a neurologist or ID doctor for lyme.. You need to see a LLMD in order to get proper treatment.. Believe me they are hard to find and dont take insurance but its a small price to pay to starting to feel better..I have been sick for almost 3 years and started treatment last month after 25+ doctors were clueless and kept mis-diagnosing me.. I finally found a LLMD in NYC (one of the best) and I feel so much better after getting proper treatment.. believe me we are very fortunate to be as close as we are to him.. His name is Dr. Bernard Raxlen in NYC look him up and give him a call.. You wont get any LLMD's on long island.. Did you have positive tests? have you started any antibiotics? Good luck and keep us posted..
How long have you been sick? 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
To see the neurospsychiatric and cognitive symptoms Lyme can cause, see Columbia University's Lyme Disease Research Studies Overview of Neuropsychiatric Lyme disease.
It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of 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.
There are some excellent Lyme doctors in NY. The ones I know of who come highly recommended are Dr. Bernard Raxlen in Manhattan, Dr. Richard Horowitz in Hyde Park, and Dr. Kenneth Liegner in Armonk. I hope you can see one soon.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
Kelly, I saw your doctor on a Mysterious Diagnosis program...the title was "shooting pains", and yes, the poor girl went to several docs and no
one knew what was wrong with her. She had lyme. Dr Raxlen came on at the end of the episode and talked a bit about lyme disease.
Hi Tina and welcome to the site. I read your post and I am sorry you have been feeling so Ill for so long. I am also from Suffolk Co. and I agree 100% with everything Kelly wrote below. Don't waste your time going to PMD, neurologist or infection control MD's on Long Island. Save yourself the time and headache and call Dr. Raxlen's office and make an appointment to see him or his PA,They work together and share info. I am extremely happy and amazed by his knowledge of Lyme and he really cares about he's patients.
Like you, I spent one year going to all kinds of doctors and having all kinds of tests. I did the math with all the co-payments I spent and was an incredible
$2,240.00. All that for nothing. This site has been a lifesaver for me and I heard of Dr. Raxlen here. Now I am being treated and the future looks bright again. TICKER is extremely knowledgeable and incredibly helpful about Lyme's disease. Do your homework on Lyme's. You'll be a bit overwhelmed but Ticker is just a click away, I don't want to speak for her, but I feel she's very approachable and always willing to help. So, take advantage of her wealth of knowledge, the people in this site and make that appointment with a real Doctor.
Feel better and good luck.