Travis--i don't have access to the whole medhelp soite right now so don't recall all your posts, like whether you are seeing a Lyme specialist (LLMD) or not. You could have other tick diseases but not Lyme that won't show up on even an Igenex Lyme test because it tests for just ... Lyme. Or it could be that you have something else entirely. Having a good LLMD is key.
My LLMD told me when my Baronella came back positive from IgenX that there are many co-infections that they may not have tested for so agreeing with Jackie, finding an LLMD is the key and can lead you in the right direction.
Sorry you didn't get any clarity. How frustrating! There are other tick borne diseases that have symptoms similar to Lyme. Have you been checked out for coinfections? Q Fever is one. Rocky Mountain spotted fever is another. Even Bartonella can cause a lot of Lyme like symptoms.
www.columbia-lyme.org has some useful info.
When I talked with my LLMD's PA about testing, she said it is usually their sickest patients who test completely negative. Those are the patients whose immune systems just aren't fighting the disease much anymore. They do an antibiotic challenge in those cases and then test again to see if they can get a response.
There is also a culture test at Advanced Laboratory Services, Inc. in Pennsylvania. They will attempt to grow spirochetes from a blood sample. It supposed to be very accurate.
You would need a skilled LLMD to pursue it further if you truly want to exclude Lyme.
Jackie i have vestibular disorders and diabetes and the combination of these diseases is whats wrong with me but thanks for your concern.What dies worry me is the optho sees nthing wrong with my eyes but they contnue to get worse
Maybe see another eye doc for a second opinion?
I read your older post. I lived in Florida in 1999, and that's when I got really sick. Did it started while I am in Florida? Or when I am in NY, or when I was in Europe? I don't know.
My vestibular disorder, neurological symptoms, and vision disturbances took several months to abate sufficient, but it took two years for me to return to 90% of former self in terms of cognitive function and sense of balance.
I saw neurologist at Mayo Clinic in Jacksonville in 2000, he says-all normal, except, yes you do have hearing loss, and vestibular damage. He thinks it is viral. It won't happens again, it is like getting hit by lightning twice-he says.
He'd tell me to walk on beach, on unsteady surface, so on--to retrain my brain-and shove me out the door.
These symptoms came back this past Nov/Dec, and continues through the winter. I had MRIs done,and all "evoked potential" tests. These potential tests all but VNG(no susprise there, and it also show no changes from test I had in 2000) was normal. MRI show white matter lesions this time. However MS, and other relapsing neurological conditions are ruled out.
I am certain your doctors are overlooking something, just like my doctors back in late 90's and early 2000's.
I have been diagnosed with vestibular damge 30 % hearing loss in my right ear WHICH A HEARING TEST AND A VNG CONFIRMED.My optho is confused on my eye situation cause no signs of diabetic diseasee exsisit and my eyes are still they dont move.I in my opinion have lyme disease i just dont have anymore money for private doc tors and my pcpc refuses to send to me to at least an infectious disease doctor.I was bitten engouraged in Sept 2009 was a healthy human being before all this.Got sick around the time i was bitten suffered with hives for a week which i never had before and headaches and extreme fatigue and sleepiness
For ALL chronic suspected illnesses, that may have an infectious basis and matching many of your symptoms, go to The Institute for Molecular Medicine website for a complete list of the recommended labs.
Pathogenic Mycoplasmas are also very overlooked in chronic lyme disease.
It seems that Lyme disease has all the glory! lol!
Travis. You may have serious deficiencies that have been either
missed or undetected. "You Are What You Assimilate"!