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Posted 9/17/2010 3:24 PM (GMT 0)
Hi

I have had some bad days legs being brats

also getting too much tingling and at times electricity like going down them

they are heavy and they are uncomfortable. no matter what I do with them i mean they hurt in this chair, 

anybody else get this?  I used to get electic like shocks a long time ago when Iwas getting very sick with this then it subsided.

How is everybody else doing?  I think im stuck in this chair for the day heavens maybe I will call dr see about upping neurontin.  

anyone know in simple language what the epstein virus count is?  my paper said normal is 18   then it has a parenthesis showing greater than 600. that would be me.

i researched it and high ebv titers is commonplace in both ms and lyme but two things tell me it at leat was originally lyme the rashes and the fact i felt horrible with my last pregancy, MS usually u will feel better in the knocked up state. sorry  to ramble feeling lonely and peed I can't go with my daighter to hair dresser about 30 miles away where there are  stores!!

Posted 9/17/2010 6:10 PM (GMT 0)
I know how you feel - I have been housebound for the most part of three years now. I have terrible leg pain, though it usually only bothers me when my pain medication is due.

I have experienced episodes of what you're referring to as "electricity" but only during sleep. It's a very uncomfortable feeling...started last fall and I was actually too embarrassed to mention it to the doctor, despite how much it scared me (which is surprising because I'm usually not embarrassed about much!). I finally said something to him a few months ago and to my surprise, he knew exactly what I was talking about and claimed he'd heard it from many other Lyme patients. It's like an electric current through your body...I feel like I'm purring like a cat, vibrating very quickly and shaking very strong... I can actually open my eyes and even have a thought process to understand what's happening, but I'm not awake enough to move my body. As far as I know, I always remember the episodes happening when I wake up in the morning. My doctor says this is from Lyme in the brain, interfering with nerve signals. I don't know if this is what you're experiencing, or if it's something different. It's never happened to me during waking-hours, and it only occurs less than once a month.

I don't know about your Epstein-Barr results - you could probably read about titer levels online and figure out where you're at with that... 'Hope you feel better soon...

Rachel
Posted 9/18/2010 6:37 PM (GMT 0)
Hi
I am sorry u are pretty much housebound, I hate it but when i am sick I have absolutely no will in me to even get dressed. I did look up the epstein bar virrus and a "high" count iis linked to both lyme and MS, I don't understand the count. I feel better today I took 2 neurontonins I normally only take at night, and I actually washed and sraightened my hair. I wonder how many people like us benefit from this drug and in what doses. Hope u are having a good day, I might even go for a ride with hubby I love love to go to thrift shops and goodwills and it has been a long time it seems. till later lisa
Posted 9/19/2010 4:27 PM (GMT 0)
Hi Roses,
How are you doing today? Of course I do hope that you are having a better day!!

Neurontin - or gabapentin (the generic name) was first intended for use for diabetic nerve pain - which is something Lymies can experience. It's the heavy, tingly, pins-and-needles type of feelings. Neurontin was & still is the only thing that will help me for that kind of pain. For me that kind of pain can escalate into bone pain & then on to the heavy pain meds - Darvocet, Hydrocodone & even sometimes Oxycodone.

One thing that will benefit you will be to make sure you are taking the gabapentin BEFORE the pain gets very bad. You need to 'stay ahead' of the pain, not try to play catch-up. Now I am not saying for you to up your dosage, but to talk to your doc & see if you need to up your dose - maybe you could put a call in to your doc tomorrow to ask.

On the EBV, are you asking about the numbers on your test, or about the illness itself? I was dxed with chronic/acute EBV back in the late '80's & have done a little bit of research reading on it.

Post Edited (Traveler) : 9/19/2010 1:53:40 PM (GMT-6)

Posted 9/19/2010 6:58 PM (GMT 0)
hi
doc only gave me 2 100 mg pills of neurontonin for bedtime. i am going to ask for 200 or 300 tid. ha ask is the word. she should be getting my lyme records pretty soon that ought to be interesting. on the ebv i am only talking numbers paper said normal less than 18 and mine was 600. i am going to try hard to get pain under control and u are right if i could get 200mg or 3oo (from what I am reading) in me first thing in morning I might be able to get the groceries. and leave the house i know thart's pathetic. I am still alive enough to be curious I understand the nerve conductors not working right but WHY would that cause such pain?

Hope u are having a good one I am in bed but I went to dinner and then barnes and noble last night it made me tired I guess.. I hate to miss church it makes me so much nicer when I go but I missed it. neck shoulders back singin. I did read though mostly about fibromylagia last night I am wondering nowi if late lyme does change its chemistry after the initial infection and settle into the symptooms of fibro, I did not used to think so but maybe.. I'd hate to think I have active lyme back residiue left over is easier for me to accept/ Sorry to witch, not alls bad I love my bed and I have darvicot (thats not even helping much) there I go witchin again but i like my bed and the quiet and alls i have to do before tomorrow is laundry and cat litter, so I am lucky. have a good one a double good one for me :)
Posted 9/19/2010 8:07 PM (GMT 0)
Hi Roses,
I think that's a really good idea to ask your doc about adding 2-300 mgs of gabapentin for mornings!! Hopefully it will do the trick! You know, your situation does not sound at all pathetic, heart-breaking yes. I know exactly what you mean about "might be able to" do whatever. My whole life is based on trade-offs lately.

From what I have read & my understanding of it, that it's not only because the nerve conductors aren't working right, but they are actually sending the wrong impulses!!! Just like having tooth pain where you no longer have a tooth!!

Yesterday was a complete wipe-out for me. Hubby had to have a medical procedure yesterday & although we were home after only about 5 hours - I was totally exhausted!!! I couldn't think straight enough to even fix dinner - good thing I had soup in the cupboard!!!

And we all need the opportunity to witch some!!! I know my hubby needs a break from my witching & constant "thinkings" on Lyem & whatever else I am dealing with in any given day!!!

Rest for now... there is plenty of time to do the things that need to be done around the house.

Now, if only I could that through my thick head!!!!
Posted 9/20/2010 6:29 PM (GMT 0)
Hi guys,

Not sure what testing you had done for EBV. I had a Epstein Barr Virus VCA Antibody IgG that was on a scale of 0-10. Mine came back a 5.00 which my Dr. said meant I had been exposed to EBV (as most of us have been) but that I was not actively sick with it. I think I would ask what the 600 menas as far as exposure vs. active infection.

That said, I've had the electric shock feelings in my arms periodically since 2007. My hands also go numb more often than not and this is starting to subside recently. I think that the combination of detox/intense chiropractic/squeeky clean eating is helping with this. It's too soon to declare it's gone for good, but I'm definitely seeing an improvement.
Posted 9/21/2010 1:21 AM (GMT 0)
Well then, another CONGRATS to you Hippie Hiker!!! I am glad to hear that you are feeling some relief!
Posted 9/21/2010 1:32 AM (GMT 0)
i am also bothered by leg problems. RLS being a major one. I also get a chilling goosebump feeling from my thighs to my ankles...in 2 seconds its gone. seems to be my left one mostly but at time they both do it. I cannot take any types of meds that have a sedative affect or the RLS is 1000x worse. the med that worked for the RLS is Requip. I do not take it now though. if i stay away from drowsy drugs i am usually not bothered by it. i do have constant knee joint pain. i havent found anything that relieves it.
Posted 9/22/2010 3:17 AM (GMT 0)
thanks for reminder I wrote it down its a good question (6oo) ebv and then i should ask how do we know if its active or old as well as share my concerns high ebv counts point to ms lyme and fibro (this is what research shows) I go into doc tomorrow afternoon. lisa
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