canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
That about sums it up over here...
Nice little quiet(ish) corner here in general support...ahhhh
So...as it is general support...
I've been having a rough couple of days. Yesterday, we drove from Toronto to Niagara Falls NY to get my bicillin shots. Trying to get them in Canada, but you would not believe...
In any event, I've been feeling significantly better with Dr. S.'s prescription of Bicillin. I'm now on shot 6.
So because I'm feeling better, little miss. driven here decides a drive to N. Falls - no problem (passenger, of course).
So...I have unverified seizures. In other words, no doc has been able to tell me what these "attacks" I've been having for the past 3 1/2 years are. 1 apathetic neurologist was useless. 2nd neurologist friend of a friend said, "Yes, they could be seizures, but no don't want you as a patient bc don't know anything about Lyme" 3. My GP requested for me to get an appt. Feb 28 for neuro. Have called and faxed the clinic. No appointment date even, so far.
So, these attacks I have are brought on by too much stimulation. By the time we'd driven to N. Falls and done the border up and down the stairs / fluorescent lights, I should have made provisions to find a room somewhere, or darken up the car somehow and rest for an hour.
No, miss driven with her *new* *higher* seizure threshold thx to Bicillin does not rest, but proceeds directly to Walgreen's. Fluorescent lights / walking through the store. Debit card doesn't work. Back outside. Get cash. Back in the store. Here we go.
I proceeded to have a "different" seizure than what I'd been used to. This time, instead of walking like Quasimoto, I shuffled like an old man. Finally I could barely move.
Things looked distorted as I threw up (throwing up is the usual). Made our way to a Days Inn. Found the public washroom. In the stall and it occurs to me something weird is going on - sort of like I might pass out, but it's not like any passing out I've done before. Get out of the bathroom, into the car, vomiting in a bag (cont'd -
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
pda won't allow me to input more text - I apologize)
don't remember crossing the bridge; remember the border guard. Find a quiet spot. Finally things calm down.
In N. Falls Canada, go to Dairy Queen (and who wouldn't after that). Woman at the counter snidely remarks, "Have a good evening..." I look quite a bit younger than I am, and it makes my partner and I look to the untrained eye as if we're on the sly for a dirty weekend away from his wife and kids! Amusing at best, but didn't feel all that impressed at the time.
Anyway. The whole thing was downright unnerving. I saw my homecare nurse today and relayed the experience. Said, "sounds like a seizure to me - get that neuro appt". So then...
Back to calling neuro for appt. Of course message machine. Call Lyme support doc in Ottawa. What a dear! He called me back. Said, "Stop calling the neuro clinic. Your GP is the only one who can get you to jump cue". Call GP. Not in tomorrow; no appts today.
Receptionist speaks with him. He says, "I won't call - tell her she will have to wait her turn - otherwise she'll just be taking an appt from someone else."
eesh.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow....What a trooper you are.
Maybe you should find a doctor who thinks seizure activity is worth an immediate phone call.
Yikes!!!
I don't even know what to say except I am sending you healing, calming thoughts and prayers.
I am still in awe of your fortitude.
I am also still in shock regarding your GP's nasty comment. What a Jack***!!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
geneal, you took the words right ouf of mouth!
i feel so sorry for you; but you were a real trooper. bed time for me.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Cobweb
Unregistered
posted
Hey Can, that was some misadventure you had there.
I know the feeling. I was so unnerved by these really strange episodes I said something to my GP who referrred me to Neurologist within a week.
Neurologist did his exam, listened to what was happening then had me sit down in his office. When he said I believe you are having Complex Parital Seizures I thought I was in yet another episode of the Twilight Zone.
He prescribed Keppra-which I resisted taking, because,well, I was in denial. This absolutely cannot be happening I told myself.
Long story short- I did start taking the meds-and voila-I'm not strange anymore. I don't come too having entered another realm with people staring at me saying "what the heck was that all about ?"
Fortunately I do not vomit or pee myself. Well, maybe I do pee myself sometimes, but not because of seizures. Now that my bladder's back in place it doesn't happen nearly as much. And the only time I feel like I'm going to vomit is when I take Doxy.
But I love the Keppra. It is one med, among a few others, that I am strict about taking.
I'm going to go look for a picture to cheer you up. Back in a flash. Carol
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Cobweb
Unregistered
posted
oops-this one might not be too reassuring. But it fits your subject title.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Guys...guys...guys...
I can't thank you guys enough for this
Here is the short:
Welcome to the Canadian Medical System - still so sure it's better? I can get into the "whys" at length later.
In car right now. Neuro clinic called me back. Lovely fellow. Said, ah...you need to be seen as soon as possible. "If this happens again, you have to go immediately to emerg."
I said, "Happens again? This happens to me 4-5 times / week!"
"I was afraid of that", he said.
Couldn't find my initial doctor's request. Asked me to fax everything in and he was going to talk to the doc to see what she wanted to do. He said, "You need to be seen ASAP."
Why has this taken so long? This has been going on 3 1/2 years. I suspect I've had 1000's of seizures from simple to various levels of complexity.
I have to say a person gets ground down after a while, with all these doctors minimizing my symptoms due to their own laziness. Thank you for your response and being so incensed. Geneal - you're right. It's time for a new GP. What I would really like is to move down to SF and be near Dr. S. That's what I really would like.
I thanked the nurse for finally taking me seriously. He took what I was saying _really_ seriously, let me tell you. I guess we'll see what the doc is made of now depending on how seriously she takes it being urgent.
I'll keep you up to date. With best wishes, prayers and blessings,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Left a message 1 1/2 hours ago. Still haven't heard back...trying again...I feel quite lonely, and know that all works out in time at it's own time more correctly than if I were to have resolution NOW. However, I would sure like to know what the *plan* is...I'm pretty wobbly today; easily weakened...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Venting: 4:30PM EST...Still no call back from Neurologist's office...and here I thought, finally! Finally! I was going to see some relief! in having someone take these attacks seriously...same old same old here it seems; no call back - wait until Monday? Tues? Next Month?
If doctors here were paid by the hour for their work, rather than by the number of patients seen, like a lawyer, things would be a lot better right away.
But I digress...Wish they would call...
5PM...guess I won't be hearing from them...this is exhausting
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
How are you dong today? Keep in touch. We're thinking about you.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks bejoy and all for all your wishes and prayers,
I did have another seizure attack yesterday, but I couldn't bring myself to go to Emerg. It's just not the place for this kind of complexity.
Mind you...I felt like I'd been hit in the head until just a few hours ago - and the seizures - I'm guessing I had between 3-6 partial seizures in a row last Wednesday in Niagara Falls. That's 4 days; I still don't feel quite right. More "teetery" ITO more on the edge of having an attack.
Anyway, between "moments" of feeling unstable, I'm enjoying? my life...
I'm kinda sorta hoping the Cilantro I just started on Thurs. is going to detox my brain, and this is going to stop "naturally"...that and with Dr. S.'s help, of course.
With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Neuro's office just called, thank goodness. Man, that intake person is kind and proactive! Thank goodness! (did I say that already?)
I'm indeed supposed to go to Emerg because the "attacks" escalating in their seriousness. Apparently doesn't matter which emerg. We'll see if I get myself to emerg next time (as I mentioned not convinced ER is generally the best place to get help for anything other than heart attack, detached retina,stroke, broken xyz, flu, etc.).
I've been put to the top of the cancellation list, which means I should get in next week at the latest. I'm a bit apprehensive for the reasons Bea mentioned in medical (not being taken seriously -- again!), but I am tentatively optimistic that I am going to get some aid. Like I said, I feel newly apprehensive about these "attacks" since they are changing.
With best wishes xoxo for a lovely day to all,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I am so very sorry you have had to endure all this crappola!
I have suggestion. This has worked for me.
I got very tired of waiting 3 or more months for appt. with a specialist (many times.) SO, when I had symptoms that were visable and frightening, I called 911 and got an ambulance (my medicare HMO luckily pays for it.)
That gets me right into an ER bed with no waiting. And for some reason it gets the staff's attention and they get to work right away.
I have only done this 3 times but I was treated and was given next week appts. with specialists! That is what you need. DO NOT hesitate to go to ER. Just catch a ride with an ambulance and you will get help right away. Plus if you are having symptoms they can see, I believe you will get help.
I will be praying for you to have the kindest and best treatment that you DESERVE!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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