posted
Hi all I've posted on here awhile ago. I just have a
question about testing.
So I went to a neurologist starting last october
for tingling, all over muscle twitching and
visual problems such as visual snow and seeing
halos/starbursts at night. I had a mri which was
normal, a vep that was normal as well as an eeg.
My neuro exam was normal excpet for decreased
reflexes.
Anyway, I have followed up with him every 3
months and my neuro exams continue to be normal.
But I am now starting to have some knee
pain/cracking when I stand for any length of
time and a few of my joints in the fingers hurt
me. My neck cracks all the time (no pain) and my
ankle is swollen if I've been on my feet for
awhile. I have also had bouts of shortness of
breath and periods where I have tons of heart
palpatations (this has been happening a month or
two a year for the past 2 years, normal
EKG's).I've also had
past problems of vertigo, foot pain and pink
eye. Also
every time I drink alcohol..even small
amounts..i feel sick to my stomache and I get
air hunger.
So I asked my neurologist if I should be tested
for lyme disease and he said "no, since you
don't have any lesions on your brain you don't
have lyme disease". I have another appointment
to see him in 2 weeks. Should I
demand/forcefully ask to be tested or should I
just go straight to an LLMD? I have never
noticed a tic bite so I'mnot sure how likely it
is that I have lyme.
Thanks -Sarah
Posts: 14 | From Southern California | Registered: Mar 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
It sure sounds like you could have Lyme and maybe some coinfections.
I would go over to Seeking a Doctor" and post there for an LLMD--just cut out the middleman and find someone who can help you.
Just for the record, I never noticed a tick bite either, and I have Lyme and Ehrlichia.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I would probably see an LLMD. I saw many doctors over many years who gave me many reasons why I couldn't possibly have Lyme disease when I asked them about it.
In the end only when I saw an LLMD did someone fully listen to me, test me correctly (through Igenex and Fry Labs) and then diagnose me.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Yes, I would defintely seek out a Lyme Doctor. My MRI also showed no lesions and I never saw the tick bite, but my blood tests showed Lyme and co-infections.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
That is the typical kind of nonsense we hear from neurologists all the time.
It does sound like you have lyme, etc symptoms. So why waste time? Go to a LLMD and get it checked out. That neurologist will never properly diagnose you.
Air hunger and sensitivity to alcohol sound more like babesia (a tick borne red blood cell parasite that makes one effectively anemic).
What you describe is how someone might feel if they flew into a town at high altitude. Very high sensitivity to the effects of alcohol.
But also it could be a cardio-pulmonary problem. There are all kinds of nasty lung problems that can cause those kinds of symptoms.
If it were me, I'd go get my lungs checked out just to make sure everything was okay there too.
Good luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
White matter lesions are not a diagnostic criteria for Lyme disease. The neuro saying they are demonstrates his ignorance on the subject.
Specialists don't often diagnose outside of their area of expertise, and even if he did, he may not be educated enough on Lyme/TBI to offer the best treatment.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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