255722 tn?1452550141

Vertigo, Anisocoria (unequal pupils), three months of weird seemingly unrelated symptoms...and nothing wrong???!!!

I'm back for venting time.  I feel like I'm being forced to be the Doctor in my own medical treatment, so I've come to ask you guys what specific tests may help my GP come to some sort of diagnosis so I can start to move on with my life!!!

For a full story of where I've been and how I got to today, there are other threads out there.  The cliff notes version is that in late July I started to feel ill, and I haven't been okay since.  For the record, there has been no rash, no fever, no known tick--though I live on the Eastern shore of MD, have had multiple bouts of poison ivy in the past couple of months because of geo caching fun, and I have had a history with deer ticks--though no known diagnosis of lyme.

Here's the thing--my symptoms which include some degree of all the issues listed below, not all at once, but all within last few months--all seem unrelated, and all the seriously Holy Crap diagnoses have come back NEGATIVE (THANK YOU GOD!!!!).  But I'm still not okay, and I'm getting frustrated.  Thankfully, my GP is flexible, not overly productive apparently, but will generally humor me with whatever tests I request--(for the record, I've also been to my cardiologist, and a neurologist, both of whom are extremely thorough and informative).

Symptoms have included:

Fainting (prior issue here, not new--but has been a part of this)
fatigue (sometimes extreme)
ringing in ears--isolated but at least three memorable occasions
anisocoria (one pupil not dilating correctly in dim light--all physiologic neurological causes have been ruled out--no tumor, no MS, no hemorhage, no aneurysm, no damage whatsoever)
toe cramps--lots of them
sciatica--right leg
low tolerance for sustained aerobic activity (but passed stress test and imaging with flying colors--so not cardiac related)
unexpected menstrual activity
passing nausea

So--I've had the general lyme titer (negative this year--positive in the past, but with negative western blot).  I've had a stress test, 48 hour heart monitor, general blood work, MRI, complete neuro workup, giardia testing, EKG, ECG--EVERYTHING SHOWS THAT I"M COMPLETELY HEALTHY AND NORMAL.

I found an LLMD not far from me, but am wondering if I should pursue an ENT appointment in the meantime?  The vertigo is exceptionally disturbing--and disruptive!!!  Though I am able to walk straight and do most things I usually do so it could be worse.  If/when I see the LLMD what should I take, say, be prepared with?  I want to make the absolute MOST of my visit and testing--I am tired of wasting time.  (Also--should I ask my GP to run a western blot again even though recent titer was negative?)

THanks all...
1 Answers
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Avatar universal

I'd just go straight to the LLMD.  The ENT may or may not be attuned to Lyme, but why spend the time on a 50/50 chance that the ENT is clued in?  Time's a-wasting.

There seems to be a mania here for people going off to get their own W. blot and ELISA and IGeneX tests, all the while complaining about how expensive the tests are.  I don't understand that approach.  Just go to the doc and let the LLMD decide what tests to have run.  If the doc relies only on W. Blot and ELISA, then I would wonder why s/he didn't order up an IGeneX test, but that's a question to ask the doc.

LLMDs will also know from history and symptoms what coinfections to test for.  

I would also NOT have the GP order up W blot and ELISA, because the LLMD may want to give you a trial run of abx and THEN test, bec. the abx can activate the immune system and give a more positive response.  Your GP almost certainly would not do that.

I would take copies of all the test results you have had run by other docs and give the LLMD a set, keeping a set for yourself, and do so going forward, so that your own files are complete in case you need to switch docs in future.  Docs' offices are simply not, in my experience, reliable in handing over complete copies.  The file clerks hate making copies and copy as little as possible, not giving a rat's behind whether that's the right thing to do.  I've seen it happen more than once.

So the question in my mind is:  what are you waiting for?  Go make that appointment, assemble your files and send a copy ahead to the new doc so s/he can review before your first appointment (if s/he decides to do so), keep your own copy and take it with you to the appointment in case the LLMD's office hasn't gotten around to putting the copies you send into the file (so the doc can at least take a quick look while you are there).  No, you aren't getting paid to be a file clerk, but I've found this is the best way to get everything in front of the doc in the most effective manner.

Sorry to lecture, but my best advice is to go straight for the LLMD, historical documents sent ahead AND in hand, and take it from there.  GO FOR IT!

If the LLMD says "no, no Lyme or other tick diseases," then you can go back to your GP and brainstorm.  

Job #1:  Rule out Lyme and coinfections.

Stay in touch, let us know how you do.  End of lecture.  :)
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