char
Frequent Contributor (1K+ posts)
Member # 8315
posted
My friend "Shizuko" has recently been posting here with a new diagnosis of Ericulosis and more...
She just passed out and is being transported by paramedics to ER. I encouraged her husband to get a hold of her lyme dr. immediately, having read many of your horror stories here.
She has many health issues and started a 2nd antibiotic recently and has been herxing badly, I think. I don't know if that is the problem...
Anyway, wanted to get the word out. Pray-ers, please say a prayer.
Thanks, Char
Posts: 1230 | From US | Registered: Nov 2005
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posted
I'm so sorry to here this!!!Prayers are being sent for Shizuko....Hope everything is OK...I know you'll keep us posted...
Thanks for letting us know!
-------------------- "Life is mostly froth and bubble; Two things stand like stone; Kindness in another's trouble; And courage in your own." TTFN -laserred- Posts: 493 | From MidWest NorthWoods | Registered: Jan 2005
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posted
She is in my thoughts and I will send good energy her way. Love & Light & Healing
Posts: 188 | From NM | Registered: Feb 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Heard last night that she was resting in ER. Evidently stabilized, thank goodness. Her blood sugar was low for one thing.
Will post more today when I hear.
Char
Thanks for prayers. She has has co-infections, positive, and lyme suspected for many, many years.
Posts: 1230 | From US | Registered: Nov 2005
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posted
Going to the ER during a herx is all too common. I did it. Seems like people just aren't prepared for the reaction to kete killing. But then it is unpredictable. If it isn't one thing, it is another. Hope she weathers this storm and is able to continue her treatment. Maybe her doc will want a lower dose.
Posts: 8430 | From Not available | Registered: Oct 2000
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Char,
Thanks for letting us know about Shizuko; I'm glad she's on the upswing, though it sounds like she has had a rough time.
I ended up in the ER during my first major herx (28 days after I started taking abx). I was completely paralyzed, which really was terrifying. Thankfully, after about 5 hours, I started to regain movement.
Nothing was ever as bad after that.
Keep us posted on her condition, will you?
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
prayer sent for best of outcomes. jarisch-herxheimer reactions can be terrifying. been there, too.
Posts: 2708 | Registered: Feb 2005
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bettyg
Unregistered
posted
Shizuko/hubby are in my thoughts & prayers as you go thru this all. I've not had to do that yet, fingers crossed.
Char, thanks for posting. Yes, PRAYER REQUESTS help us all so much during the deepest, darkest days, weeks, & months. What a great friend you are.
Shiz, looking forward to having you back on the boards with us.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Sorry to hear about Shizuko
sending healing prayers and thoughts her way
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi everyone!
Thanks for responses and prayers.
Shizuko is home and feeling decent. Her LLMD is sending her to neurologist to investigate possibilty of seizure. Also will 30 day heart moniter halter.
She is not to drive for now which is hard to handle.
On a very good note, her neighbors and friends from church are there for here and helping a lot with logistics of getting to dr, care of kids and all.
posted
Does anyone know of any LLMD's that follow pts in the hospital? I know Dr C does not.
Posts: 12 | From Missouri | Registered: May 2006
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It is good your friend is being checked out, but I think they are missing the third and most common cause of fainting in Lyme disease and tickborne illnesses.
In my opinion, adrenal fatigue is the most common cause. This can cause orthostatic hypotension.
As for the not driving -- that is a standard ER/hospital instruction for liability purposes. Docs would swear hubby does not have seizures, but then would insist he stay on seizure meds and not drive!
I do let him drive short distances locally by himself, but I drive when we are together and on all trips over 20 or 30 minutes. He is no longer on seizure meds, but this was the compromise we reached during the 2 years he was on those meds.
Of course I start worrying if he is gone longer than I think he should be while doing errands -- he is usually holed up in the library reading magazines or on the PC.
It is easy to set rules for kids, but much more difficult when adults are the patients.
24-hour holter monitors are the norm -- never heard of doing one for 30 days before.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you so very much for all your prayers and thoughts!
It was a scary Friday night for sure!
I actually felt pretty good all day (not much pain, stiffness, etc), so I worked at my office (not my home office) until about 4:15 pm and headed home.
I even volunteered at my kids' elementary school that night for our first annual Japanese Festival (I am Japanese).
My pain was "unusually" low even at night unlike other nights when I sometimes can't even walk due to pain.
So, I got on my computer to check emails, and I passed out briefly onto the keyboard.
My hubby tried to move me to the bed, but I had literally no strength in any part of the body: I just couldn't hold myself up at all.
When the ambulance came, I still couldn't move except my mouth! I could understand what paramedics asked me and even answer them (though very sluggish way.)
I came home on Saturday, and I was tired but okay on Sunday and Monday.
Then, early Tuesday morning (around 3 am) while I was still sitting on a toilet, I started feeling very dizzy.
I managed to stand up only to pass out right there.
I was going to drive that morning to see a NP at Dr. Z's office for a follow-up on my ER visit, but mu hubby decided to drive me because of the early morning incident.
It was my NP who told me not to drive until I see my neurologist and rule out any seizure disorder.
I am going to see him this afternoon.
I did 24-hour Holter monitor soon after I started seeing Dr. Z, and it was normal.
Now my NP told me to see a cardiologist and do 30-day Holter monitor, which Dr. Z had planned to do if 24-hour one came back normal anayway.
The NP said that 24-hour one might not always pick up everything, and we definitely need to see if my repeated fainting/dizziness is heart related if not seizure.
When I am done with 30-day one, I might need to do a Tilt Table test for the evaluation of orthostatic hypotension.
At ER, they did check my BP while lying down, sitting up and standing but didn't see any significant change.
My NP did the similar thing yesterday - sitting and standing. No significant change again, but she noted that the Tilt Table test is much more accurate as the body position will be changed little by little.
Could fainting and dizziness be part of Herxing?
Well, at least my NP thinks we need to rule out any "organic" causes.
Thanks again for all your support! shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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bettyg
Unregistered
posted
Shiz, SO HAPPY YOU ARE OUT, and reporting back to duty here. Best wishes on finding out what caused this to happen.
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I saw my neurologist today, and he wants me to do 48-hour EEG.
WWith many electrodes on my head for 48 hours, I will not go outside!
Anyway, he didn't think I had a seizure, but he didn't rule that out either.
Also, from a legal point of view, I am not supposed to drive for 6 months after fainting unless the cause is obvious AND can be eliminated easily/quickly (stopping certain medication that caused the fainting, for example,) according to my doctor.
He did say that realistically, I should be able to drive if my EEG is normal and I feel well for some time. I shall hope so.
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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Sorry to hear about your troubles. I had similar problems only I didn't pass out, just fell down. They did the 30 day heart monitor, tilt table, EEG etc. and finally decided I have myoclonus which are small seizures or muscle jerks that can cause you to fall down (and my head feels weird). They do not measure on the EEG, though.
I am on seizure meds and do drive. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10222 | From Illinois | Registered: Aug 2004
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My first symptoms of myoclonus started in bed. You know how you sometime jerk right before going to sleep?
Then I began to get jerks sitting up during the day and my head would feel weird.
Then I would suddenly fall down while standing or walking. A friend pointed out she thought it was a seizure. But I never passed out. I could comminucate easily, but then had trouble walking afterwards. So I guess I jerk and lose control of my legs. Sometimes my whole body jerks.
Sometime my jaw quivers or it will jerk and my teeth will slam together, so I often wear a mouth guard to bed.
I had all kind of tests run on me--heart monitor, tilt table, MRI, ultrasound of carotid arteris, 48 hour EEG with videotape at Northwestern. Because the EEG did not change when I jerked, the doctor at Northwestern concluded I had myoclonus.
I take Keppra and Klonopin and although they may me very tired and slightly off balance I don't have as many seizures--unless I am herxing.
Good luck with your tests. Let us know the results. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10222 | From Illinois | Registered: Aug 2004
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posted
I don't have the severe jerking that make me fall, though my muscles (one location at a time) occasionally twiches (sometimes like a big wave.)
I do know I have Periodic Limb Movement Disorder (involuntary movement) found through a sleep study. I don't know how big the movements were, but they were numerous.
I also have Restless Legs Syndrome (voluntary movement urged by uncomfortabe sensations.)
When I pass out, I think my muscles are losing the strength to hold me up - at least that's how I see it.
Interesting that you mentioned about jaw quivering and teeth slamming together. It sounds very similar to what I was experiencing while being taken by an ambulance last Friday.
The funny thing is that it was only the left side of the mouth. But I remember it was a very fast "movement."
I know I grind my teeth often at night during the sleep. When I start getting a TMJ headache, I wear my night guard to go to sleep.
I have been taking Klonopin every night to help me sleep for a few months now though.
What is Keppra? Is it a seizure medication?
I think we have endless questions!
Take care. shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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posted
Keppra is a seizure medication--usually used in conjunction with another seizure medication. There are 2 types of myoclonus. One type is where the muscles jerk. The other type is where the muscles relax when they shouldn't and then you could fall down.
Hang in there. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10222 | From Illinois | Registered: Aug 2004
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bettyg
Unregistered
posted
Char, may I suggest a change of topic heading since "Shizuko is home; progress update"?
Shiz..glad to see you posting more & comparing notes with someone else who shares your problem.
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