I posted here once or twice before and I still do not know if I have Lyme Disease or not???? Been sick for over five years with a lot of really strange symptoms. I had blood work done through Igenex last September and on the one test it came back with three indeterminate bands and on the other one it came back with two indeterminate bands. I just recently (July 11th) had a spinal tap done. The lyme test in the spinal fluid was negative, but it did show obligenal (spelling???!!) bands. I have six of these bands in my spinal fluid which my doctor says is usually indicative of MS, but I don't have any of the other "markers" to support MS (my MRIs are without lesions, my VER was "probably" normal and my ENG showed just a slight delay in the one leg muscle). I AM SO CONFUSED and FEEL SO SICK.
Can someone PLEASE tell me if EXTREME head pressure and EXTREME diziness (to the point of almost falling over or passing out). Pressure changes inside head going from standing to sitting and vice versa and head noises and burning sensations and "fluid feeling" in head and ears (even having your ears wet), ears feeling full and ringing, plus difficulty walking and muscle twitching and EXTREME vision problems. Difficulty lying down - feeling as if you are falling even while lying down and so much more .... are these symptoms of Lyme Disease?????
Sorry for all the questions - but I NEED HELP. I am not sure what to do next. The doctor is waiting for some more test results to come back on the spinal fluid ... but I think that he FINALLY believes that there is a problems because of these bands showing up in my spinal fluid because up until now I think that he thought I was crazy.
I would GREATLY APPRECIATE anyone's input especially regarding the symptoms and the bands in the spinal fluid.
Thank you so much for listening to me "go on and on"!!
Please overlook my typos - my vision is so messed up!!
I'm going to a Lyme Literate Doctor (LLMD) who is very knowledgeable and sees people from around the country. He told me that even if the Western Blot comes back w/ a "blip" on it, then the person has Lyme's. He treats based on symptoms and only uses the tests as a guide (seeing how it's so common for tests to come back w/ false negatives).
You're symptoms sound very similiar to Lyme Disease and if you've had 2 tests that have come back with some abnormalities, then I would recommend to find a Lyme Literate Doctor in your area and seek treatment. If you can find which bands were indeterminate and post them, I'm sure Ticker can give you a lot of great info.
Lyme is a great imitator of other illnesses (i.e. MS, Parkinson's, Fibromyalgia, Chronic Fatigue Syndrome, ALS etc). Not only that but you have to deal w/ coinfections too (other diseases ticks can transmit).
Also, read through other posts b/c there is a wealth of knowledge. After studying Lyme Disease for less than a year, I know more than my General Practitioner does! You'll find that knowledge is truly power and you'll have to take your health into your own hands.
Hi Lucy's Daughter. I Am sorry you still have no answers. Spinal taps are not reliable tests for Lyme disease. I believe they show Lyme in less than 5% of cases.
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
It is very important to see Lyme knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. In my opinion, this is the most important thing anyone who has Lyme or may have Lyme can do. Not doing so is like seeing a podiatrist for a cardiac problem.
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. Yes, it is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
To me your symptoms sound like they could be tick-borne related (Lyme and possibly Babesiosis). There is a Lyme doctor in Temple Terrace (near Tampa). Would you like his name?