getting closer and closer to a diagnosis.... but need your help! spinal tap??

hi guys!

i was hoping to get some opinions about what i should do next. here's a recap of where im at: sick since january, worsening neuro symptoms including trouble swallowing, burning and pressure in head, tingling/pulsing sensations, perceived weakness, also fatigue, creaking/cracking joints/shoulder, and low grade fevers. plus about a gazillion more symptoms covering every part of my body!

ive recently been trying out garlic tablets, vit B2, and teasel tincture. since returning home from abroad in april i have seen my PCP, a neurologist, an endocrinologist, a rheumatologist, allergist, general surgeon, opthamologist, and rehabilitation therapist!!! i was also sent by my PCP to a psychiatrist who said that i have no underlying psychiatric disorder to the surprise of my PCP. my summer has been spent at the doctors office getting blood drawn and having MRIs. this is what was found: 2 small lesions on the brain MRI, not indicative of MS. cervical spine MRI showed bulging disc and benign intramuscular vascular tumor. i also had a normal EEG. blood tests are all basically normal- ive had a couple borderline high TSH levels, but almost everything checked out as normal. normal cortisol, ANA, ESR, c-reactive protein, heavy metals, mono, vit D, B12 and 2 negative ELISA lymes tests (i had a deer tick bite with no EM rash August 2010).

i currently have an appointment with an LLMD in september, though am waiting to hear back from another clinic with an LLMD that i am more interested in. my insurance is sending me to an infectious disease doctor at the end of september. however, on monday i see my neurologist again and have been debating about getting a spinal tap. back in may i went to the ER for trouble swallowing, slightly stiff neck and had a lowgrade fever but they held off on the spinal tap then given i was seeing my neuro later that week. unfortunately she never ordered tests then. now i have the option to request the spinal tap but ive heard mixed things about them- the risks, benefits? could you help me understand that? given my symptoms are primarily neurological, would it be more likely to find a positive test result in the CSF? and how long does it take to recover from the procedure? im supposed to start classes at the university on sept 2, so im trying to figure this out soon! what other tests can i request??? i know that i will be seeing an llmd in a month but im sick of waiting in the mean time given im getting sicker! any advice of tests that i can have done while i wait?

also, i watched 'under our skin' for the first time last week. i started balling. seeing the film made me really emotional and showed me that i really need to keep at trying to find answers

The dates seem messed up on this site.........not sure who posted what first.
I've been reading up a lot on tests for Lyme disease and most of them are unreliable, at best. Recently read about a PCR test, that tests for the dna of the lyme disease instead of antibodies ( which are slim, especially if you are in later stages). Might be something to look into. I'm going to ask my dr. I haven't seen her yet, but should soon,. Just waiting to move closer so I can deal with the travel time.

I got a spinal tap for my MS dx. Not pleasant!!!


If you do get one, make sure you lay down immediately afterwards for at least 2 hours! And I mean in the hospital where you get the tap done!!! I left the hospital shortly after my tap which was a no-no!

Good luck with your issue! You sound very persistant!

I to have the intolerable pain in my neck and pressure on the back of my head, I was thinking of going and getting a spinal tap to see if there is lyme bacteria present, but from what I have been reading here on this site when you start takeing the antibiotics, and the bacteria are breaking down the headaches are common. I have had menigitis in the past ( about 15 yrs ago) and I remember not being able to get up and function at all because of light sensativity and the pain was unbelievable. I would have to guess that if you are still able to move about throughout a day then a spinal tap wouldn't be of valve because it would probally be negative to menegitis. Only you know how you feel and go with what your body is telling you. Wish you the best of luck and know how you feel stay strong!

Everyones symptoms are different, if you go on the main page and go to the "New to Lmye start here" it will list all the symtoms there. I took my doctors over 6 months going there every week to diagnois me. Also I would ask them to print out all of your lab results and view them for yourself. You would be amazed how much the doctors don't tell you. You can also see what they have tested you for and what they have left out. Best of luck