posted
I have had a really bad 3 weeks. Today, I had one of my episodes where my right leg doesn't work.
I get to a table and hang on and yell for hubby to help me sit down. When he got there I was stiff and couldn't move a muscle in my body.
I also couldn't speak. I was trying and could get a short word out like "no" but even that was difficult.
It scared hubby to death and he had our son to call 911. So I was sitting there in a chair after they got there and fell out in the floor.
I passed out but one of the guys kind of caught me. Hubby thought I was having a stroke or something.
Got my first (and last I hope) ride in an ambulance. Saw the dr and told him about the lyme (was dreading that) and he ordered a ct scan and blood work.
It all came out fine and the ER dr came back in and said he thought it was from lyme. Big shock there for sure. He does want me to follow up with a neuro but I'm not going to.
I'm sure it is the lyme although I've never not been able to talk before or not move. That was so scary.
So has anyone else had trouble speaking or moving or anything similar?
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes, many do. Sorry you had it so bad. When I got that way when I first started treatment, I just went to bed. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I'm very sorry you went through such a traumatic time. Like many here, and many more that no longer come here due to remission, I have had similar episodes. I lose all my energy, can't talk, can barely think a single thought, can't move, can't open my eyes. Then later, next day or a few days later, my symptoms skyrocket.
Infections of the nervous system can cause all manner of odd and frightening symptoms like this. You are not alone, and what you experienced is within the norm for neuro-Lyme. It doesn't make it less scary when you are going through it, I know.
You might want to make sure you are keeping your blood sugar normalized, as blood sugar drops can adversely effect you neurologically. Major blood sugar drops can even bring on seizures, especially in vulnerable folks (like us).
Also try to rest more, do less. Your body needs all the energy it has to fight this disease for you, so try to help it out.
I have been trying to look at Lyme treatment as similar to TB treatment, where they have you in hospital or other high-care maintenance, for many months, where you just rest and let others take care of you.
I know it's not always an option, but you have to do your best to rest when there is a choice.
Another thing to look at trying might be forms of stress management, like controlled breathing, or meditation, so that you can keep your hormones normalized.
I know when I get upset, my adrenaline surges like crazy, which in turn drains my energy, and I crash bad (symptoms flare up for days or weeks afterwards).
I hope some of these tips might be useful, if you haven't already applied them.
There are of course many things that can help you, supplements, food, and lifestyle-wise, besides the main Lyme treatment (antibios), but these are a few tools that were very important to me to help me get through the traumatic times.
posted
Thanks Pinelady and Nenet. Lots of good tips.
I'm feeling some better this morning but still having a difficult time walking. It's wearing me completely out to walk across the floor.
I'm so short of breath and I haven't had that in a long time like this. I just keep having to take a really deep breath.
I'm just so sick of dealing with all this crazy stuff like I'm sure you all are.
I'm the caregiver for my 77 yr old mother that has alzheimers. We built her an apt. next to our house but it's still so hard to care for her.
I have to cook her meals and take her meds to her 3 times a day. I don't know how I'm going to accomplish this now. My hubby and kids do help when they can.
Don't know what I would do without them. Anyway, it's hard for me to rest like I need to since I take care of her. Hopefully this won't last long and I can walk again without so much difficulty.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
sapphire, sorry you had such a scary experience. This illness can do so many weird things to each and everyone of us.
I've never had the ER run but believe me there were many times I thought I needed it.
I hope at the end of the day you are doing something for you...taking a nice hot soaking detox bath. It would help relieve some stress both physically and mentally.
Take care of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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btmb03
Unregistered
posted
Sapphire, though I've never actually lost consciousness, I've had so many similar episodes I've lost count.
I just wanted to add that nenet (as usual) and others have excellent points. I truly think we should be in a place where *others* looks after us, like a clinic and we slowly start to regain our strength.
Does sound like you have a lot on your plate, hope you rest when the 'household' rests and maybe a 'do not disturb' sign on your bedroom door or which ever room you rest in may not be so bad either!
I can only imagine how scary this was for you. Let's hope it was an isolated incident and not having read the other posts in detail perhaps even a herx 'gone bad'?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
They are right. Stress can make you worse. If she
is in her 70's you may want to get home health to
come in to do the hard stuff till you get better.
Just a thought.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks to you all. It helps so much to be able to talk to others that understand this crazy disease.
This wasn't a herx, I'm not on anything at all at the moment. Wish it was.
Hubby has given me strict orders to stay put today and rest. It's hard for me to let others do what I feel like I need to be doing but I don't have much choice.
I sure hope this leg thing clears up quickly. I can't be out of commission like this.
Pinelady, that's a good idea. We did have home health set up but after talking with someone about it we changed our mind.
From what we were told they will come check on her once a day and give her her meds but that's about it. I need help with meals, etc.
She's on a low salt diet so she can't eat just anything like we used to do when I was sick and couldn't cook.
Seems nothing is easy when you have lyme.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
Just wanted to reassure you. I have had many stroke-like episodes during my treatment that scared the hell out of me. Went to the ER many times and they scanned me so many times, I would rather forget.
I had moments where I couldn't speak, think, pains in my head and confusion, wild blood pressure swings, dropped foot, etc...
It is much better now as I continue treatment.
Be well.
Posts: 770 | From USA | Registered: Jul 2006
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posted
Thanks Myco. I have had a few similar episodes but not where I couldn't talk. I was trying so hard to speak and it wouldn't come out. Just sounds. Very very scary.
At least if it happens again they won't call the ambulance. That's the good news.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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