LymeNet Flash: Bad Neuro Appt (again)

This is topic Bad Neuro Appt (again) in forum Medical Questions at LymeNet Flash.

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Posted by LisaS (Member # 10581) on :

I know, I know, it is my fault for going to a mainstream dr. Now my opinion is even more serious to never go to any Dr other than an LLMD.

I was referred to this neurologist for a second opinion on what's causing my neck pain by my primary care dr. Usually I don't even go there anymore but I got so bad I was in bed three weeks and thought I had to do something.

So anyways, this neuro says, well you have a lot of paper work. I'd have to read through all this before I know anything. (Shouldn't she have read that out BEFORE my appt?

Then I said can you please just give me another lyme test. I want to know if it's Lyme or something else causing all these symptoms. I told her my symptoms were:

neck pain, which they gave me steroids for
which since steroids, I have joint pain in my fingers, wrist, neck and shoulder and knees.
an internal vibration
balance problems and dizziness
too weak to get out of bed
and my legs and back burn, i don't know if its muscle or nerve or what...
I get lost while driving
my right eye keeps going blurry

So she tells me those aren't lyme symptoms. And that I haven't convinced her or any of the other drs that that's what I have! Why is it up to me to convince them?

I'm the one who's sick, if they don't think it's lyme shouldn't they be looking for something else?

Then I tell her I haven't been the same since years ago when I tested Positive for lyme, and could I just get another test. She said no, once you have a postive test you will always have one???

So I said, well why don't you think I have lyme then? And she said cuz my second test two months after abx was negative. Well isn't that contradicting herself?

Then I said, well I haven't been tested for co-infections yet and she said it don't matter, doxy treats everything. Grrrr! She said you think you know about lyme so tell me what you think you know. It got ugly.

I ended up just storming out of there, which didn't help my case, now I just look crazy. But I was so mad! I can't stand these local drs anymore. Now I got an appt with my LLMD.

But I'm so frustrated cuz I get too sick to be on abx. I think I just give up on all of it.

Thank you for letting me vent. Seriously! [bonk]

Posted by knobs (Member # 21928) on :

You said it yourself. No point in going to these doctors if they've already checked for reasons other than Lyme for your symptoms (which can all be attributed to lyme). If you already tested positive you need to find a way to treat. Glad you have an LLMD appointment! Take comfort in knowing that doctor will listen.

Posted by gemofnj (Member # 15551) on :

lisa,

good for you!

well, not that you are sick of course [Smile]

i had a similar incident and sent the ID doctor's office of copy of Dr. Burrascano's guidelines with a lethal letter attached.

probably didnt do any good, but it made me feel better since it appeared i was more educated that they were.

dont give up and good luck at your LLMD visit. [Smile]

Posted by bettyg (Member # 6147) on :

lisa, still get a copy of medical notes for this visit.

things wrong, CHALLENGE it by writing a letter and requesting it go in your medical file too.

if they send a copy of drs. report to someone; by HIPPA LAW, they are required to send yours too.

so sorry .... but glad you gave them a piece of your mind and then some. xoxox

Posted by LisaS (Member # 10581) on :

Thanks everyone. I knew it was a mistake to go. I just thought maybe something besides lyme was making me worse, but I'll never know cuz these drs in Lake Geneva just won't consider anything if it don't show up on an MRI!

Betty, I have been fighting for 8 months to get my records from this HMO.

Posted by Tincup (Member # 5829) on :

It's ok that you went to a duck. Please don't feel bad about your decision to do that.

Some of the smartest people I know go to ducks thinking they will get what they need and what they pay for.... help for their medical condition.

Ducks are suppose to be smart.. but they aren't always...

http://www.youtube.com/watch?v=MtN1YnoL46Q&feature=browch

However, since you've gone to a duck.... and you have been ducked...

The LymeNet rules state that you will need to do the duck dance.

http://www.youtube.com/watch?v=mLUV74hxa34

[Big Grin]

Posted by LisaS (Member # 10581) on :

Thanks for the laugh Tincup! Consider the duck dance done!

Actually I think the way I walk nowadays I probably look like I'm doing te duck dance.

Posted by greenbow (Member # 21463) on :

been there too..now, i found a LL neurologist...she is a GEM!

Posted by LisaS (Member # 10581) on :

I wish I could find an LLneuro and an LLpsychiatrist!

My friend who has the same symptoms as me just went to the same neuro, who told me my symptoms werent like lyme, she is one of my neighbors, and she tested her for lyme. How can she refuse a test for me but give one to my friend.

My friend has a meningioma. So she has a reason for her symptoms but she still got a lyme test. Unbelievable!

Posted by karenl (Member # 17753) on :

Betty,
do you still believe in Hippa?
I sent a letter to Mayo but they never add it when they send my reports out.

But it is very good advice. Thanks Betty.