So all day yesterday I felt off. Intense stiff neck and just tingling. Well, last night I was just relaxing on my deck with friends and kids.
I went in the house for the evening and felt VERY dizzy so I immediatly went to my best friends house (right next door)
I have had these attacks before but not like this. I started shaking uncontrobaly while my body was stiff as a board. My fingers and toes were extended in every direction and when trying to talk, I could just mutter.
Well, we ended up calling 911 because my whole left hand was purple! That freaked me out!! Usually I can get through these but the purple hand did it for me. BP was 150/100 and hr was 150ish.
So, I get to the ER and mr young er doc said this was anxiety and not related to lyme. I begged him to keep me. He shot me up with ativan. While I was hailcinating I somehow fell asleep and they were kicking me out.
I call my lyme doc and tell him what happened. He suggested I get a neuro workup. thats where I lost it. I have had to neuro workups!!
I in turn fired back an email telling him I am at the same exact place I was a year ago and that I refuse to go through this circle of madness AGAIN.
Another doc was highly recommended to me but he told my boss that if I hadnt been to New England that I didnt have lyme. That Lyme is only there. Well, I think he may be out because there is a flipping brickwall seperating New England and CT from the rest of the country. DUH!!
I am sorry guys, I am so angry and crying. I knew this wouldnt be easy. My symptoms are ten times worse then they have ever been. My memory is almost fully gone. I talk to people in the morning and then see them in the afternoon and ask the same questions I did that morning. I cant remember and its killing me!!!
Thanks guys!
Posted by Dekrator48 (Member # 18239) on :
I am sorry that you are feeling so ill.
Since lyme is a neurological illness, I am wondering if you are getting the best care from your present LLMD?
It is possible that you could have a new neurological problem also....or it could all be a result of the lyme.
Maybe re-evaluate if you are getting the best care from him, and if not, maybe you should try to see someone else.
Posted by disturbedme (Member # 12346) on :
Are you from Kansas? I ask because it says you are from 'the land of oz'. I was born and raised in Kansas and that is where I was bitten.
I find it kind of odd the LLMD would ask you to see another neuro when you've seen a few already.
Are you sure your LLMD is an LLMD?
Posted by Keebler (Member # 12673) on :
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I've had similar experiences in the ER - I have been studying up so that I will NEVER have to go there again.
One important key is that if you ever have to go again, do not mention lyme. Just ask them to stop whatever is happening but try to keep lyme out of it.
The last time I had to go (paramedics nearly forced me to go), it was about shivering, shaking and non-stop seizures and inability to talk. I only mumbled to the EMTs that I happened to have lyme - and they told the ER. I was refused treatment because the "don't treat lyme and there is none here, anyway."
But, I was not there for that. Luckily, an hour after an infusion of glucose, the seizures stopped. It was likely either low blood sugar (it was 60 when the paramedics found me) or a porphyria attack. My GP later wrote a letter instructing IV magnesium if such an event happens again.
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This sounds like seizure activity (shaking would be clonic; stiffening would be tonic):
" . . .haking uncontrobaly while my body was stiff as a board. My fingers and toes were extended in every direction and when trying to talk, I could just mutter. . . ."
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And . . .
Have you been evaluated for Raynauld's - that purple hand is a clue.
and why would any doctor be talking to your boss?
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as for the stuff that sounds like seizures to me, are you taking magnesium? Was your blood sugar low, too. When I have seizures, my blood sugar is often dropping to the floor.
And Magnesium helps with the shaking, etc. Fish oil, too.
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Especially in light of the seizure activity and the purple hand, your LLMD is correct in suggesting a neuro workup and he may have forgotten that you've been there. A cardiologist may also be able to assess Raynaulds (and that can go along with lyme sometimes - but not necessarily).
Ask your LLMD if he knows of any specialists who are completely LL. This may be something other than lyme but it's good if they are well versed in lyme.
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[ 05-14-2009, 10:31 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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Since you've been on lyme treatment for a year, I assume you are alcohol free, and (hopefully, gluten-free) as both can cause seizures.
AND be sure to check labels for anything you consume, even mints, cough drop, gum, and toothpaste. Be sure there is not even a trace of aspartame or MSG (Google for all the different names).
Aspartame or MSG can trigger seizure (or seizure-like) activity.
Be sure to get a lot of rest now for the week or so and take extra good care of yourself. My guess is that adrenal support is very important right now, as is liver support.
good luck.
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B-12 shots have helped me tremendously. A special kind is mentioned here:
ARNICA - BOIRON homeopathic - I take this right after a seizure and it reduces brain swelling.
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Posted by nenet (Member # 13174) on :
Jaimie, I am so sorry you went through that at the ER. How are you feeling today?
You were within every right to go, and to get proper care. I, and many others here, have had episodes like you describe - minus the purple left hand, and they can be very frightening. Was your hand still like that in the ER? If so, what did they say could cause that?
The symptoms match several that are warning signs for heart attack, or a seizure or stroke episode (the paralysis, slurred and mumbled speech), so you were right to be cautious and be seen. You should never hesitate to be seen with symptoms of heart attack or stroke, or a first or new type of seizure. It doesn't mean you had these things of course, but they need to be looked at and ruled out.
Do you have a follow-up with a cardiologist or someone who specializes in POTS or NMH (Neurally Mediated Hypotension)? Maybe your LLMD thought you were concerned you might have had a brain or CNS event (which can be caused by Lyme), and was suggesting a Neurologist to rule that out? Did your LLMD say why they thought that might be useful?
I am confused about something. I remember you signing up recently, and just starting to see an LLMD and getting treatment in the last few months. But here you say you have been in Lyme treatment for a year. Were you with an LLMD before this new one? I'm sorry if I have somehow confused your history, but I thought I remembered responding to your very first post here.
Anyway, I hope that you feel better today, and try to get plenty of rest. I remember my episodes and ER trips all too well, and they were so exhausting. Be sure to take it as easy as possible ok?