Marc -
Your description of the "diagnostic process" your doctor has employed is
strikingly similar to the one I went through several years ago. At that
time, I was passed back and forth among my primary care physician, an
infectious disease specialist who claimed to be a Lyme disease expert, an
otolaryngologist (ear/nose/throat), a psychologist and a neurologist. My
lyme disease serology was negative at the time. My MRI's showed several
white matter lesions. My lumbar puncture showed slightly elevated protein.
My evoked potentials test was unremarkable in that the nerve impulse
propagation on the right side of the brain was the same as that on the left
side.
Like you, I had headaches (crushing near-daily migraines), numbness,
tingling, awful brain fog, neck locking and crackling, overwhelming fatigue,
etc. My neurologist decided that I was suffering from some obscure variety
of migraines and wanted me to try amitryptiline. My infectious disease
specialist was convinced it couldn't be lyme disease and that I likely had
MS. The otolaryngologist decided that it was probably some kind of chronic
sinus infection.
I was bounced around by these guys, on and off, for several years. In the
meantime, I never received a meaningful diagnosis, and I lost about a decade
of my life. About 2.5 years ago, I finally saw a couple of true lyme
literate doctors. I was examined thoroughly, tested again in several ways,
and it became clear that I had, indeed, been suffering from undiagnosed (and
therefore untreated) Lyme disease for more than a decade.
I've been treated extensively since then for advanced neuroborreliosis.
Wonder of wonders, my arthritis of 12 years is largely improved. My short
term memory has returned to a great extent and I am capable of functioning
again at a level almost comparable to where I was more than a decade ago. At
this point, having been sick and untreated for so long, I don't expect to be
fully "cured" in the sense of completely eradicating the infection from my
body. I still have some distance to go before I can say that I feel 99%
better -- I'd guess that I'm more like 85% or so. But that is dramatic
indeed after what I've been through.
I hope that you have the fortitude to pursue a correct diagnosis, regardless
of what you are dealing with. Based on my experience and your description, I
believe it is quite possible that you do, indeed, have Lyme disease. White
matter lesions are a common byproduct of neuro-lyme (neuroborreliosis) and
are NOT part of a differential diagnosis for MS in this case. If you
neurologist doesn't understand this, you're seeing somebody who is just not
sufficiently informed to make a valid diagnosis.
Regardless of the lab you use, Lyme disease serological testing is only
partially useful. The incidence of false negative results is alarmingingly
high, and I'd guess that you may have something like a 50-50 chance of
getting an accurate result on any of them. However, as you note, your best
shot at a meaningful result will be with a good lab. I would personally
suggest that you have your tests processed by IGeneX. You can find them
online at www.igenex.com, or call them at 800-832-3200. Before meeting with
your doctor, you may want to call the lab in advance or have your doctor
call the lab to make sure that your doctor is ready to take the tests and
process them properly for IGeneX.
Ideally, you should find a true Lyme literate doctor to diagnose you or at
least consult on your case. This may be the only way to knowing for sure if
you do, indeed, have Lyme disease. Contrary to what some may tell you, good
lyme literate doctors will *not* be trying to label you with Lyme disease
unless your complete presentation is consistent with the illness. However a
non-lyme-literate doctor will most certainly have problems recognizing
anything less than an obvious case of Lyme disease. Please try to get a real
lyme literated doctor on your case if possible!
If you need to find one, I suggest that you post a note here to a new thread
with a new topic such as "Need a Lyme literate doctor in <your location>".
You should receive at least a couple of responses that will put you on the
right track.
Best of luck to you. Please understand that your actions here may well
determine the quality of the rest of your life. It is worth holding out for
a truly knowledgeable specialist who can either confirm or rule out Lyme
disease as part of your diagnosis.
- Jon
Quote:
> I could use a little help with a lab.
> I live in the south. My neurologist will probable diagnosis me with MS (he
> wants to wait 3 months and do a second MRI with contrast of the brain to
> confirm). I am almost certain it is lyme. Headaches, numbness in hands and
> feet, brain fog, stiff neck that is almost as musical as rice crispies,
> extreme fatigue which is worse after a work outs, just to name a few that
> don't fall squarely on MS game board.
> He has done all the tests he should have for lyme. Three MRI two of the
> brain one of the c-spine. The one of the brain (with contrast) shows
lesions
> which I think is why he is leaning toward MS. The spinal and {*filter*} tests
> showed negative on lyme.
> Here comes the part where I need help..(soon, not quite there yet!)
> When I asked the nurse where the tests where sent (I was most interested
in
> the western blot) she told me and the labs are local (in Georgia). So I am
> thinking that who ever is reading the test has had little or no experience
> with lyme.
> So, then I am thinking that I need to go a different route. I have an
> appointment with an infectious disease specialist. He probable doesn't
have
> an a great deal of experience with lyme either, it is just to rare in my
> area. But if the {*filter*} work is sent to a lab that is experience with lyme
I
> will get a result that I am more comfortable with and confident in (I do
> recognize that I may need this done several times to confirm).
> Okay, here then is where I am asking for assistance. Does anyone have
> information on labs that specialize or have experience with lyme?
> Thank you!
Need a Lab (not the dog)