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12/27/2008 07:51 PM

lyme encephalitis

Posts: 290

Does anyone know anyone with Lyme that turned into encephalitis?

I just got done with a test for it. 72 hour EEG with videotape surveillance in my house over X-mass.

I've been having "seizure" like episodes since last Sunday and back in July when everyone said it was a herx? First my head kills then off I go shaking...sometime I loose the ability to walk or lose my arms? I am on some seizure meds but they still happen????

It gives me such anxiety! Plus for some reason I feel so depressed. I keep crying....

Post edited by: ldsucs, at: 12/27/2008 20:15


12/28/2008 03:02 AM

I do and so does my S.O. as well as a number of people in my local lyme group. Unfortunately, it's a sign, usually, you've had lyme for a long time.

I and everyone I know personally, have been diagnosed using a SPEC scan but they're not available everywhere. You also have to have a radiologist who knows what lyme encephalitis looks like, there's a certain pattern to it.

In case it wasn't explained to you, the blood flow into your brain is diminished (hypo) and things get swollen. Do you know if you have any leisions in your brain as well? Those can be found through an MRI or an EEG. Since you just had a long one, I hope they looked.

How did you get all that gunk out of your hair after 3 days! Yikes.

Personally, I've never had issues with seizures from it. Yours may be quite accute. I don't know which anti-seizure you're on, but there are a handful to try. I have been on anti-seizures, I guess more as prevention, in the past.

Lyme, as you know, is ultimately a neuro disease. Make sure you're on abx with good blood brain barrier protection. When the neuro stuff starts to get that bad, this is when doctors often start using IV ABX because it does get into your brain better through IV.

I'm glad they found it diagnosed it but I'm sorry this has happened to you. Of course it's depressing and scary. Don't hesitate to talk to your doctor about trying a small amount of anti-anxiety meds. In my experience, anxiety makes everything worse.

The running joke with all of us with swollen brains is that if our brains are getting bigger, we must be getting smarter.

If you want me to dig up some more specific data on this, PM me and I'll find something that makes sense.

Please take care!

12/28/2008 06:41 AM


I'd be depressed and crying also-----good reason. I hope you have a therapist or close UNDERSTANDING friend who you can talk to. Depression and anxiety are awful and need to be talked about

A little meds probably won't hurt, but unless you really need them, try to stay away from an anti-depressant. (Of course, if that's what you REALLY need----- then...)

Shorty, if you can, and if you find more specific data on Lyme enceph., could you post them here? I think this membership might get some value from them.

12/28/2008 08:43 AM
Posts: 630

Great idea Cave. Knowledge is power. I'd like to know more also.

Thanks for your time Shorty.

12/28/2008 11:31 AM
Posts: 290

Still really confused!

I have a port and have been on IV Rochepin since Sept.

So shorty what do they do to stop this? How is yrs treated?

Are you in the North East?

I have xantax and that works but the anti-depressants never ever worked for me! Does lyme Encep. make you depressed?


12/28/2008 02:17 PM
Posts: 637

ldsucs, I'm sorry your feeling so sick. It's scary when we can't control our body's. I think antianxiety meds are a good thing, but I heard some bad stuff about xantax. My friends doc told her to get off it because it can damage your central nervuos system. I'm not saying her doc's right, but please look in to it. Lymes enough to deal with as it is.

12/28/2008 07:44 PM
Posts: 290

Is that true? Xantax can do that? I feel like I'm all ready pretty much damaged anyhow.

Should I keep it GREEEN and CLEAN?

If I have to be in this pain convulsing and seizuring up to 7 times per day...the very least they could do is since they can't seem to fix it would to let me get pain free...high on something anything at this point!

My DD who is 3 with Lyme see's this and ask why can't Monny walk anymore. She is scared and wait till she finds out she has it too! It's not right letting me live like this.

I will figure this out but I don't except a DUMB NEURO TO CARE!

My Hubby told My Neuro that he couldn't find my seizure meds and she said well that is not my job! He almost cried! I laughed half dead laying on her table....laughed VERY LOUD!!!!!

I'd hate to stick her with a dirty's not a crime either since chronic lyme DOESN"T EXIST!!!!!!!!!!!!!!!!


12/28/2008 08:12 PM
Posts: 860
Senior Member

ld, I am just beside myself with anguish for you right now. I wish there were something wise and comforting that I could say to you to make things feel better. I know this has to be incredibly frustrating, and in regards to some of the things you have divulged about your how your doctor is handling your care, particularly your pain management, and an obviously lack in compassionate bedside manner, I might consider seeking out a replacement. That's certainly not an easy task either, but you are right, you should not be left in that kind of pain, nor should you (or your hubby) be scoffed.

I just would like you to know that I am praying for you, as I know others are, too. I am so glad you are continuing to come here and share your thoughts and feelings with us so that we can at least provide you with friendship, compassion and understanding.

Shortangle, I too, would be interested in reading more on lyme encephalitis, as I have been concerned about this for myself as well. I have many symptoms of it, and have met with the same dead ends and mockery that I did when I brought up the possibility of Lyme Disease.......... and look where I am now with chronic lyme. *sigh*

ld, back to you,.. please continue to post to us on how you are doing, and please, please do let out your feeling sand emotions. Vent here on the boards. It won't be the solution to the depression & anxiety & anger, but it certainly may help. Bottling up is no good, and only causes further harm, so please know that you can turn to us. And further, you may always PM me or any of the other leaders for added support or private matters, as well.

You are not alone, hun. The road is rough, but you are not traveling it alone. We're right here with you.... lean on us. Wink

(((BIG HUGS)))

12/29/2008 01:10 AM


Hi there. Okay, they've brought in the big guns already. Are you also on orals? I know my doc and the lyme docs in my area are doing that as a matter of course right now so patients are on both IV and orals.

So, on IV since September is 4 months. It really might just take a while. Most people I know have topped out at around 6 months but I know a couple who have gone longer. One about 9 months and she didn't feel better until month 7 and one went 14 months. Neither were able to walk and had lots of those horrible symptoms you experience. They're both fine now. They have to manage their lyme but they're symptom free. Do you have ALS, or MS, or Parkinsonian symtoms? So you have other types?

I'm not in the NE, I'm in CA in a high lyme area so we're very lucky in that we have lots of docs. If you're seizing 7 times a day, I'd say something needs to be done about your anti-seizure meds. Do you have a lyme doc as well as a neuro? You might want to go through your lyme doc for some of this, and if nothing else, a little compassion might come with it. I'm with you, I'd seize a needle right into her behind!

My encehpalitis tends mainly to cause a lot of cognitive issues, word recall, all that. It really hasn't changed all that much over the last couple of years but due to a number of allergies I have with meds, recehpin is out of the question for me. My doctor and I "fight" about it all the time. He's always blaming my allergies (friendly only). So, I'm stuck on orals for it.

Right now, don't worry about the fact that you're taking xanax. If it becomes a problem, then you'll do something about it then. It affects your CNS which is what it's supposed to do. What do they say, don't borrow trouble? Are you sleeping at all?

Have you talked to your doc about a pain med? I know it sounds like I'm pushing the pharmacy at you right now, but you are very accute, way past the stage of getting too worked up over volume. Getting off meds sensibly is not especially hard, I've done it before, but you have to be smart about it. This isn't the time to worry about it unless you're prone to addiction. Many lymies I know are on either ultram or soma or flexeril. They're all low-level pain-killers.

If you can't get any relief from pain from your current doc, you may, depending on your insurance, be able to see a pain management specialist which is actually an anisthesiologist (okay, I can't spell it) with another couple years of training.

I'll check back in tomorrow. I wish you a night of peace.

12/29/2008 01:43 AM

I give up for the day. There really isn't much that's useful for the patient on this. I'll keep looking. Most of the academic stuff I've seen is along the lines of case studies and whether or not and where it exists. You're past this stage!

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