posted
OK. So, I was just released from a nice little weekend retreat at the hospital after a single episode where I passed out at home.
I'd been having chest pain and abdominal pain since my colonoscopy on Friday, and was getting out of bed to tell him when the next thing I knew, I was on the floor. When I came to, I was still alone, and couldn't get any reponse from my bf in the other room, so I sarted to panic, which lead to more chest pain.
When the EMTs came out, they administered oxygen and told me it was just a panic attack, and said that they advised against going to the ER. So they left it up to me.
Now, I was thinking "duh, it was a panic attack you crackhead, one minute I was getting out of bed one my merry way to tell my boyfriend my tummy ached, and the next I was on the floor and couldn't get any help. Would you not panic if you passed out, woke up, couldn't move, and help wasn't around?"
I told the regional supervisor he could shove it (literally) and sent them on their merry way, there was no way I was paying them for that ambulance ride. The first responders were nice enough to help me out to my boyfriend's ruck so I could be driven in to the ER.
Once in the actual ER, I was hooked up to monitors and told that I was dehydrated after the colonoscopy. As a skeptical Lymie that knows there's always some other underlying problem (and who drinks more than enough water to hydrated a family in Somalia), I opted for a saline drip over the suggestion to go home and drink 2 liters of water.
Sure enough, they get the drip going, and I'm talking with my boyfriend, then WHAM! my head hits the side of the stretcher and I'm out again. When I came to all I remember is the nurse shining one of those little lights in my eyes and them trying to get me to talk.
Little problem after the second episode. My brain would think what it wanted to say, I could make noises because I was in hysterics and hiccup-crying, but I could not make the connection between my brain and my mouth to say what I was thinking. The nurse had the nerve to tell me it was voluntary and I needed to cut it out.... I wanted to grab a pen and paper and write "no, but this is @#$%" (followed by a good right hook to the nose.
After my BF explained to the attending physician that with my Lyme Disease, I have often had trouble finding words and spoke slower, and broken at times, the Dr called the LLMDs 24hr line, and got orders to put me on 1g of Rocephin. I was sent away for CT scans and about 45 minutes after passing out, I was able to tell my BF I loved him. Which was the best moment of my life.
I was admitted to the ER "observation" unit as a cardiac patient and hooked up to a wireless monitor 24hrs to monitor my heart. This was all about 3 AM Sunday morning, and I was asleep by 4. At 5 I was awaked for vitals, and stayed awake because I knew more Drs would be coming, after all, I was in the "Observation Unit" and a Cardiac patient.
I met with the house Dr, who had discussed the possibilities of starting my treatment a little early (I'm due to have my PICC line put in on the 27th), but she said she was rotating out and her colleague would be taking over.
What a monkey's but he was. I kept requesting he call my LLMD, but he wouldn't. Instead, He had the resident ID duck check me out (who I also told to call my LLMD), ordered Lyme Serology, and an MRI, and left. Didn't see the quacks until I requested the patient advocate at about 9PM. Then, they magically appeared.
Said there was white matter in my brain, (duh, that was a real shocker), and that my heart was fine, but I was staying one more night to be "observed" and undergo more extensive testing to my heart in the morning.
He said he hadn't called my LLMD because the serology hadn't come back yet, so he had no info to give... At that time my boyfriend and I about killed him, but I managed to calmly tell him that there was nothing my LLMD did not know about my blood. With 30 vials drawn 3 weeks ago, I could be sure he wasn't going to surprise anyone with the serology. He left the room. And the nurses drugged me to sleep.
When I woke up, I was put through two ultrasounds, one on my heart and one on my carotiod (sp?) artery. Guess what folks, they both came back normal. DUH! Took a real genius, right? 24 yo, with a h/o neuro lyme passes out, is it really going to ber her heart?
They requested I stay and speak to the ID duck one more time to lay out a treatment plan, but I whipped around and told them that since he wasn't reccomended by the LDA, and I had to tell him what Lyme Disease was, I hardly thought he was qualified to "lay out" a treatment plan for me, unless he'd spoken to my LLMD, which they confirmed he hadn't.
At that point I began to pluck the heart monitor pads off of me and peel the sticky tape from my IV. When my nurse came in, she pulled the IV, handed me my discharge and told me I could pick up me MRI films on the way out.
SO, my question is, has anyone else become I guess mute????? It was rather scary. I'm still not feeling great, but we're toughing i out until I hear from my LLMD, or I pass out again, in which case, I'll choose a different hospital.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Amazing, how little they know. Passing out, losing your train of thought, poor memory, unable to properly form words, facial palsy, etc. are all part of the lyme gig.
My teenager would simply just fall over but not pass out. We'd hear a thud, race into his room and he'd be laying there, wouldn't call out for help, and didn't move. Just laid there. Needless to say, he didn't get out of our sight for a year until he was better.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Oh what an awlful experience you had. Your courage & fiestiness is admirable.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
AP,
First, can I give you a hug? I think you need one...or a million.
Nothing near your experience, but I had a colonscopy a few weeks ago. While still in the recovery room, just about ready to go, I had all the symptoms of a gall bladder attack. It was my second attack, although my gall bladder appears healthy.
I think our body's may just react badly to any invasion.
On another line, I have never had the mute issue. But I do have some motor control problems. I've had short periods, probably under a minute, when I couldn't get my hand to move to a door knob and open a door.
I've also had myoclonus jerks that have recently increased to more Parkinson's type tremors (or what I think is Parkinson's type tremors). Just today, I couldn't control my hand enough to enter numbers on the security key pad to get into work. My hands wouldn't listen to my brain, but wanted to go to different places.
Again, the lack of control was pretty short in period. And not moving a hand is a lot less scary than not talking. But there is definitely some brain signal thing going on.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Im going to give you some HUGS too :-)
WOW, you handled that so beyond well. Good for you for getting out of their when you knew they werent going to help you. ER's are horrible.
I havent had the passing out or mute thing. Ive come close to passing out though and lost my vision.
Ive had it when i was sleeping and my eyes were awake and i could not wake the rest of my body up, and when i tried to scream nothing came out.
Ive also had motor control problems like today...i felt like i was cross wired.
I agree with what Aniek says, our bodies cant take much stress, the invasion of the colonoscopy probabaly set off the ketes.
Try to relax and get some rest.
sending warm thoughts your way.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Hey AP, You did a wonderful job in a horrible situation...the hospital!
That said, yes, I have gone mute many times and had paralysis.
twice hospitals have referred me for a psych consult. the first time my children tols them that I have LD and this happens..that hospital wouldn't call my LLMD.
The second time, a different hospital who listened to my hubby and called my LLMD! Yeah! that hospital is farther away, but well worth the trip!
Anyway, rest, watch out for all stress..physical, mental, emotional, spiritual and others. AS your pathogen load and herx intensity goes down, I hope these type of episodes will vanish from your life.
Congrats on the wonderful self advocacy. I wish you well!
Posts: 663 | From NH USA | Registered: Sep 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
What an experience! Good for you for sticking up for yourself. Dumb ducks.
I had the dreaded "C" word a few months back. Rather a 'draining' experience, I must say. Hopefully your wooziness will subside shortly but some rest sounds like it's in order. Your BF sounds like a keeper!
Bravo, AP!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks all for your kind words, hugs and support. Not quite sure what exactly is going on right now with regards to my treatment being started a few weeks early, or what, but hopefully, I'll know more tomorrow...
Hey, anyone who reads this that goes to Dr B in Southeastern VA, could you please PM me? I have an important question.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
When my condition was worse I would pass out and or be unable to speak under stress. My system would just shut down, body and mind, when overwhelmed.
I am much better today and can handle more stress. But I still feel it could happen. Naturally I try to avoid stress as much as possible.
Posts: 925 | From California | Registered: Sep 2004
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WildCondor
Unregistered
posted
Gosh, what a story. I have had the same experience more times than I'd like to admit. You were probably dehydrated from the colonoscopy. The meds they give you mess with your blood pressure, drug and sedate you for days. that plus you were already weak from the colonocopy prep. I bet you got low BP and passed out from dehydration.
Lyme is classic for causing hypotension, I have Neurually medicated Hypotension from Lyme inflamming the vagus nerve leading from my heart to brain. I am on Atenolol for it and the ducks at the hospital are so retarded they say no, you have high BP thats why you are on a beta blocker. i say NO, wrong, for Lymies, it does the opposite. Its useless, unless they know, they are so clueless.
Glad you got out of there. Hopefully continued IV treatment at the correct doses for Rocephin 2-4 grams/daily pulsed, and checking for co-infections you should be in a better place. Possibly have a Tilt table test done by a cardiologist. Just some ideas!! Feel better!
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I had to laugh when I read your post. You can really tell a story. Wish I had had as much presence of mind as you did when hubby was going through similar experiences about 4 years ago. Really takes me back.
At that time I did't know enough to ask for the patient advocate. Did try for a 2nd opinion once which got us nowhere.
This reminds me of a couple of the numerous hospital/ER experiences with hubby . Once I walked into hubby's hospital room and just made it to him in time to keep him from falling in a heap on the floor.
By the time the nurses got to the room he had regained consciousness -- they said he had staged the event for my benefit! I couldn't convince them that his back was to the door and he didn't even see me until after I got him back into bed.
When the docs ignore you I did learn one trick to get their attention. At this one hospital the patient chart was kept in a basket on the outside of the door to the room.
The nurse caught me looking at hubby's chart and called the doctor to "report me". It didn't take them long to show up. I told them that I wanted to know what tests they were doing and what the plan was etc.
Hubby has had problems with going mute -- the 1st time this happened it probably lasted a couple of hours -- he was in the hospital and the nurses wouldn't believe it was real.
I still have a piece of paper where he wrote down a few things -- mainly asking for a doctor and wanting to know what was happening. He had probably had a seizure between the time he called me at about 6 am and when I got to the hospital about 45 minutes later -- he didn't know me at 1st and couldn't speak.
The sitter in the room was upset because it was shift change time and the nurses weren't responding to his concerns. Even with the nurse's aide in the room at the time of the episode the doctor's weren't concerned. Needless to say we checked out as soon as possible.
Haven't read too many of your posts so don't know what other symptoms you have been having or how long you have been sick etc.
I do want to caution you that if you are having this many problems before IV's I am concerned that you may have additional problems during treatment with Rocephin.
It was a really good drug for hubby -- about 25% temporary improvement in symptoms over 3 months (went slow and spread out normal 2 months treatment over 3 months).
Hubby was able to briefly resume walking for exercise during this time he felt so much better. However he was also walking into walls (especially at night) and I don't remember how many times I found him passed out on the floor after a "seizure-like episode" in the middle of the night. He was taking Depakote (a seizure med)at the time.
My advice would be to take all the antioxidant support you can and to do whatever you can to support detox. We did a lot of things but it wasn't enough. Think COQ10, Resveratrol, Vitamin C, pychnogenol and Phosphatidylcholine.
Also be sure to take lots and lots of acidophilus as hubby ended up with elevated blood ammonia from overgrowth of G.I. bacteria. Yeast is not the only problem you need to worry about.
Hubby didn't have diarrhea so it took a while to figure out what was going on. It wouldn't hurt to add in some bifido bacteria and s. boularrdi as well or maybe some oregano or olive leaf extract.
And finally if you have not been treated for coinfections expect a very quick relapse when stopping Rocephin -- within a week or two.
I didn't have access to this board at that time and we had to learn all these things on our own with very little help from docs. Be thankful that your doc has a 24 hour emergency # -- don't think hubby has had access to that from any LLMD or PCP in entire 5 years he had been sick.
Glad you are back home and hope you are feeling better.
Bea Seibert
One more suggestion -- be sure to get copies of all records from the hospital. When hubby was at his worst I carried a folder with me everywhere we went that included the most important medical records so if we ended up in an ER or hospital we were prepared.
At the time I wasn't outspoken enough and hubby ended up having way too many MRI's which can get expensive really quickly. We were traveling between doctors and every hospital wanted to do their own MRI. The symptoms may progress or change but it is very unlikely that an MRI will change from one week to the next.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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at the hospital after a single episode where I passed out at home. ![[bonk]](graemlins/bonk.gif)
![[cussing]](graemlins/cussing.gif)
![[confused]](graemlins/confused.gif)
and hooked up to a wireless monitor 24hrs to monitor my heart. This was all about 3 AM Sunday morning, and I was asleep by 4. At 5 I was awaked for vitals, and stayed awake because I knew more Drs would be coming, after all, I was in the "Observation Unit" and a Cardiac patient. ![[shake]](graemlins/shake.gif)
![[loco]](graemlins/loco.gif)
![[group hug]](graemlins/grouphug.gif)
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