LymeNet Flash: Paralysis?

This is topic Paralysis? in forum Medical Questions at LymeNet Flash.

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Posted by Andie333 (Member # 7370) on :

On Tuesday (the 4th day of a herx with oral antibiotics), I was typing an email when suddenly my hands started to tingle -- a sensation that quickly spread down to my legs and up my arms. I called my significant other, and by the time I heard the phone dialing, my legs started to go numb. The call ended when the numbness spread into my arms and hands, and I was no longer able to hold the phone. My SO arrived home quickly and found me still sitting in the chair but unable to move at all.

My SO called 911, and the ambulance came in record time, thank God. The guys had to get me down the stairs and into the ambulance. Unfortunately, they took me to a hospital I don't especially love. I could still talk (though by then, I couldn't move my head) and tried to convince them to take me somewhere else, but there were legalties or something. Anyway, in the ER, they put me into a space with the curtain open. It took about 90 minutes for the doc to see me. My SO was out in the waiting room, unable to get back until the doc had a chance to examine me. All I kept saying was: no steroids; I'm a late-stage Lyme patient. No steroids!

I was pretty afraid (and I'm not one who normally freaks with medical stuff), and at one point, it occurred to me that this could end up permanently disabling me. The nurse had put in an IV line in my hand, and after the doctor asked me a few questions, he instructed the nurse to inject something into the line. Another hour or more passed. The whole time, I kept trying to will myself to move my right foot. Or my left. Or my arm...anything! My SO was calling my Lyme doc who is in another state. Finally the LD was able to talk to the ER doctor. I have no idea what they said. But after about 90 minutes (from the time the doctor first came in), I repeated that whole: "move my right foot" thing, and it moved. Gradually, feeling began to be restored to my body. Late that night, I was checked out. It's 2 days later, and I'm still exhausted and feeling pretty awful, but I haven't had any recurrence of this. I have taken some steps to be more pro-active -- finding out how to reach an ambulance company that will take me to the hospital I want, making sure I always have my cell phone available, etc.

I was just wondering whether anyone else has experienced anything similar (with paralysis)? I've read a lot of information about herxes but don't remember seeing anything about paralysis. This was one of the most difficult things I've ever experienced, and I was really scared! I'd be grateful for any thoughts anyone has and especially grateful to hear from anyone who's gone through something like this.

Thanks!

Posted by troutscout (Member # 3121) on :

Woke up that way once...it sucks....I would suggest you try soem anti-inflammatory enzymes or other natural anti-iunflammatories.....Lypronil from Green Muscles...see
www.myremedi.com

Or,...this one works great for me.
www.mangosteenmd.com

The paralysis....will occassionally rear its head for me time and again.

But...its duration is not as long.

Trout

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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

Posted by achey (Member # 6284) on :

so sorry to hear you have had to go there.
I have many paralysis experiences. My LLMD not know why...herx maybe but also long before LD dx.
ER doesn't know what to do with us. My hubby gives me electrolytie and protein in fluid thru straw. rubs my body, gives homeopathic constitutional remedy, and we wait it out.
Went to er once this past winter...total parayliisis , not speach, thought I had had a stroke. Iv fluids and time helped, and O2. Er doc wanted to admit me for psych elval but LLMd called him and said no way.,

Try making sure you get even days. Resting and gentle exercise and good food and good sleep. Take your suppliments and have lots of water and lemon water. Sometimes this all helps me. Sometimes I still crash.

I hope as you heal, this runs away forever. I know it's discouraging. Be thankful for everything you can. Try to stay in the present moment.
I wish you well!

Posted by Andie333 (Member # 7370) on :

Thank you so much -- all of you -- for posting your experiences. I'm sorry any of us have had to go through this, because it really is scary.
Trout and Rask, the thought of waking up that way is humbling. Trout, I will explore the sites you suggested, and I really apprecite your posting them. Rask, I'm so sorry this has had a lasting effect on your feet.
Achey, your experience pretty closely parallels my own (although I'd had NOTHING like this prior to my Lyme diagnosis). Part of my fear, I think, was being sent to the psych ward...or having this move to my lungs or heart. It's just bizarre to not be able to move your body yet still be able to think and talk.
I'm pretty new to all this (just got the test results back about two weeks ago), and at this point, I don't have much energy. But I do try and rest and I'm trying not to be discouraged.
Again, thanks to you all for sharing your experiences.

Posted by SAK (Member # 7387) on :

You're not alone! I wish you feel better soon.

It's been 3 weeks I stopped Flagyl 1500mg/day. I only survived it for five days. I still feel awful. It's hard to move at all. My legs are yuck, my energy is yuck...

Only thing that helped a bit is www.chitopower.com. I'm getting some more now. I tried chelation to detox- didn't work; I tried Epson salt baths- nothing.

Be well!

Posted by wrotek (Member # 5354) on :

My God. i know this feeling loosing control in face muscles ,hands legs but never lost it totally. Have You heared about Marshall Protocol ? http://www.marshallprotocol.com ? avoidind vitaminum D meybe will help You

Posted by tickalert (Member # 7033) on :

Hello Andie,

Yes it happened to me 3 years ago before a lyme dx. I was feeling fine the day before and woke up one morning with severe numbing/tingling and paralysis.

Made a trip to the ever dreaded ER and they found a white spot on the brain after doing an MRI. Then, I was referred to a neurologist who never figured out what was wrong with me...surprise surprise.

Mine didn't last as long as yours but it's scary I know.

The neuro symptoms have been pretty constant since the inital onset.

Try taking it easy especially since your herxing.

Hope your feeling better soon!

Posted by pq (Member # 6886) on :

i once was swimming laps,and lost control over my lower right leg when swimming "frog-style" with the legs; as i pulled the right leg in, the lower one rotated upward,due to the resistive force of the water against the leg. I felt the pain of the one or both of the inner most ligaments(s)connecting lower leg bones to the femur.

i left the pool immediately.

several incidences of sudden loss of part of the bowel above the rectum. sphinter held the package in the 'mailbox.' Not something good to happen while highway driving.

Posted by Andie333 (Member # 7370) on :

Again, I'm so grateful for people sharing; this really is one nasty and freaky disease!
I'll check out all the sites people mentioned. I'm familiar with chitosan but primarily as a weight loss aid. Alert, I agree this symptom is really terrifying and I still can't imagine how scary it would be to wake up that way. pq, I'm swimmer too, but since the onset of my severe symptoms, I've been too scared to go into the water (a first for me), and I've put my pool membership on hold.
As far as the bowel thing -- Yikes!

Posted by 1tick3victims (Member # 7445) on :

Dear Andie,

I am so sorry to hear what you have gone through. It is absolutely frightening.

This happened to me last year. I was completely paralyzed and even had a near death experience when my throat closed up completely. I saw the light, etc.

Mine started exactly like yours. I first felt like a lightening bolt had gone through my head and I became confused and then the tingling started in my hands. By the time the firefighters arrived at my house I had crawled to the front door and was paralyzed completely. They thought it was a drug overdose because I couldn't explain it and went through my drawers in the kitchen and found all of my medications.

Later with an LLMD's astuteness we learned that I had something called Guillan-Barre Syndrome (do some reading on this and you will probably find some similiarities). Looking back, I do remember feeling very tired the day before, with a sore throat.

My case was related to a root canal and subsequent infection in my jaw that right to my brain.

I recovered, but very slowly. Please be patient with yourself. Months later, I lost the use of my left leg. I have recovered the partial use of it, but it is still in severe pain 24/7 due to neurological damage.

Please let me know if you have any other questions. I hope that you get better soon and I send you my prayers.
Regards
Paisley

I was brought to the

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best regards and blessings,
paisley

Posted by Andie333 (Member # 7370) on :

Paisley,
Thanks for what you wrote. When this happened to you, were you still able to speak and think? Just wondering.
Also, when were you diagnosed with Lyme?

Posted by 1tick3victims (Member # 7445) on :

I was able to think, but unable to speak when the paralysis krept up to my vocal chords. It started in my hands, then from my feet and went upward.

I've had lyme since '85 and was treated for 4 weeks back then. Not rediagnosed until last Dec.

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best regards and blessings,
paisley

Posted by seibertneurolyme (Member # 6416) on :

Hubby doesn't have much problem with numbness and tingling but he has frequent seizure-like episodes -- generally 3 - 5 episodes a day -- for about 2 1/2 years now.

About 1/2 the time he ends up in what I call transient quadriplegia. Basically he has horrible muscle spasms and his muscles get really tight and freeze in all sorts of weird positions -- I have some lovely pictures I show to doctors sometimes.

Usually when he has the freezing up spells he can't talk -- sometimes he babbles nonsense (kind of like baby talk) and other times he tries to talk but says the wrong words.

If he is confused he usually calls me his night nurse (and does not recognize that I am his wife) and he has several other phrases such as the Fireplace man (a former doctor had Firesprings Rd as an address) that I have learned to decipher.

I have never taken him to the ER for these spells since we started seeing LLMD's because of too many bad ER experiences before the Lyme diagnosis.

The freezing up started when he initially tried to come off Depakote -- a seizure med. He does not take that anymore because it is so liver toxic and it never stopped the seizure-like spells or tremors anyway.

I use IV Ativan in his PICC line as needed to stop the seizure-like episodes and to relax the frozen muscles. Even so I have to massage and move his muscles for 10 - 15 minutes before he can move them himself.

I have been thinking about taking him to another neurologist -- have not been in about 1 1/2 years now but not really sure that would do any good. Have had brain MRI's about every 6 months and basically number or white spots have been unchanged for a couple of years now.

In my personal opinion hubby's spells are the best indicator I have of how much his brain is disturbed and unfortunately just about every antibiotic he tries causes these episodes to be more frequent.

Hubby has often said he wishes he could open up his brain and wash all the toxins out! I am sure there are a lot of you out there who are looking for a brain transplant!!!

Just don't get talked into electroshock therapy -- we have had to refuse this option a couple of times during psych admissions before the Lyme diagnosis.

Bea Seibert

Posted by seibertneurolyme (Member # 6416) on :

At least the doctors weren't arguing over whether you were unconscious or not. We have run into this before in ER's and hubby's disability insurance company told him he might have felt like he passed out but there was no record of his loss of consciousness. The Rescue Squad notes never make it into the ER records and there were several visits where hubby was carried out on a stretcher.

Be prepared is the best you can do, because I have learned that you never know what is around the corner.

Bea Seibert

Posted by can not remeber (Member # 6520) on :

Andie333

I am sorry you went through that. But I want to thank you for your post. This is very scary. I lurk on this website and usually just look on search when I have a question. I live alone, and your post helps so when/if something like that happens I do not panic. Alot of what I read on here has saved me alot of co-pays from the ER and I haved learned just to go with it, it will subside.
I hope you are feeling better.
Bea, sorry to hear about your husband I e-mailed you
Be well,
Teri

Posted by Andie333 (Member # 7370) on :

Bea,
You and your husband have really been through one heck of an ordeal; I'm so sorry all this has happened, but I also agree that this disease is really unpredictable.
Terri, I appreciated your post. This paralysis episode really was a wake-up for me to take some addition precautions. Nothing radical, just a bit more careful. I now have the number for an ambulance company on speed dial on my phones, and I carry extra anti-anxiety meds with me, in case anything like this ever happens when I'm out or by myself. I've subsequently found out it was a double-dose of Atavan that went into the IV. And I've gotten a bit more careful about being sure my cell phone is charged and with me.
I've really appreciated everyone's posts.

Andie

Posted by Andie333 (Member # 7370) on :

I just wanted to add that it's been a week now since the paralysis and the ER trip. For five days, I felt awful -- tired, spent, my physiological symptoms exaggerated. Then yesterday, it was weird, but sometime around Noon, I realized I was feeling better than I had felt in about three months. I had energy, I could concentrate and focus and even get some work done. So, of course, I did too much. But even today, the good feelings held. My Mom (who's almost 80) called yesterday and said she wants me to hurry and get well, so we can go to Machu Piccu (sp?). That's a sweet and pretty compelling incentive.

Andie

Posted by 3greatkids (Member # 3838) on :

Hey Andie,

That sure is incentive!Your Mom must be wonderful.You have a great attitude,something needed to take on this monster of a disease.

Hang in there and start packing!!

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