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 Post subject: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 10:47 am 
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This is really bothering me and this is a symptom that appeared in the last year or so.

When I wake up in the morning, many times I don't just peacefully open my eyes, I jerk awake, like a bomb went off, heart racing like I have been running. Then I feel shaky and strange.

I don't know how else to explain it....Danny said it has happened to him too.

Does anyone else experience this? I would assume that it is a nervous system "glitch". Our LLmd explained that our nervous systems don't "react" correctly because of Ld. I have not mentioned this symptom to him.

Anyone else?

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 11:00 am 
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Yeah Dana, This is neuro Lyme for sure, Lyme really attacks the nervous system and brain reactions. I was trying to describe this on another blog but i can't quite explain it. you feel like a complete disconnect, almost like you are out of body, feeling of losing control and somethings about to give. No one can understand like a fellow Lymie what you are going through that's why they think we are nuts because of the bizarre symptoms we describe.

Hang in there and remember to do things that are calming like music etc. and keep your mind off it as much as possible. I try to breath deep and steady and relax and put on some christian music or soothing background music, i have some stuff with singing birds and water falls etc. very soothing stuff that seems to work. I do my light karate stuff exercises but can't do what i used to do anymore but exercise does help a lot.

Peace Johnny


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 12:45 pm 
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This has happened to me but mostly when I nap not so much in the a.m.

It just feels nasty. Almost like a panic attack. Does it happen to you every morning?

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 1:37 pm 
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Thanks Johnny - you are right no one could understand but another lymie.

Molly - no, thankfully not every morning and YES naps (if I ever get them) I will jerk awake over and over, like my body can't relax...I can't stand this feeling.

I am having a mentally "off" day - so tired of this - so tired of living like this...just miserable.

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 2:20 pm 
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I hear that, tired is not even coming close to describing how long and how much we have to put up with. The only plus with Lyme is some do get better and even though it's a long and winding road there is light at the end of the tunnel. Everyone i talked to that got better said to me that you have to be strong and fight with all your might and don't give up.

Lord i agree right now in Jesus precious name that you give my sister a word and touch from above. Let your spirit move and let your anointing flow on Dana today and we give Satan notice that Dana is a Kings kid and that he has no power over us not today or tomorrow or forever because you paid a awesome price on the Cross for us. AMEN!

Peace


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Mon Jan 19, 2009 4:34 pm 
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Oh, thanks for the awesome prayer Johnny!!!! :angel2:

I was reading some of Brian Rosner's 2nd book, Ten top lyme treatments last night.

He mentions over and over how long the road is and that our immune systems ultimately win the battle. One lyme patient was quoted saying something similar to this, "Many lyme patients I knew as the years went on, weren't getting well so they'd seek other diagnoses, I kept on pursuing Lyme and eventually overcame it". I think I said this already but my LLMd said, "Lyme is a marathon, not a race" Another LLMd is quoted as saying "The turtle wins the race".

Yes there is hope - but in the moment sometimes it 'feels' so hopeless...but "We live by faith, not by sight"..gotta keep casting down those wrong thoughts and speak scripture truth.

You are in my prayers Johnny - God will prevail through us and we will shout it from the rooftops!

:hands:
Dana

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Tue Jan 20, 2009 6:42 am 
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well, we already talked about this on the phone, but I'll add it here too. yup, I get this too, not every morning, but ever since I can remember. Even back in my school days as a youngin. I'd jolt awake before my alarm clock, not like I WANTED to get up, I just want to sleep anymore, I'm soooo tired. and with naps too, I just can't rest. and the worst part of it is, that our body needs peaceful rest to heal.

BUT, we are all Christians here, we all have a wonderful faith and I KNOW God is with us, and HE IS healing us. We WILL all prevail and tell our stories. and I'm sure we'll all continue to fight for those who come after us.

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Tue Jan 20, 2009 8:48 am 
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I have this, too. Thanks for the good reminder of why i have it. My tendency is still to blame myself for some hidden anxiety. Helps so much to remember truth!!! Appreciate you guys!
polly


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Thu Jan 22, 2009 3:03 pm 
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Could you guys explain this a little better? I wonder if this is the same thing that happens to hubby? Except his happens soon after he falls asleep at night. All of a sudden he's awake with what he says is adrenalin surges. Wonder if its the same thing.


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Fri Jan 23, 2009 11:55 am 
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Gina,
Yes, that sounds similar - it is like an adrenaline surge. It can happen once when waking up in the morning (for me) or it can happen multiple times...like I will drift off asleep and bam wake up with a jolt, drift off and again and then again the jolting awake feeling.

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Fri Jan 23, 2009 5:31 pm 
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Dana, I have the answer, but I don't know why.

When I had my sleep study, they said I had no events. I hounded the kid for answers. I said I woke up and my heart was racing. My brain was firing

I was waking up with a jolt. I would feel instant terror. My brain would feel like electricity. It was so disturbing.

The manager heard me crying and said he would show me.

He said I was waking up then my brain waves were going nuts and heart was following. It was amazing to see the lines go off the graph. He said that I was having some sort of adrenergic response to what he didn't know.

I personally wake up and dip right into the klonopin or the feeling will take hours of my life.

This can be neuro lyme I am sure, but sometimes it coincides with my babesia symptoms which jump back everytime I go off of artemesia.

I hope this helps.
Thanks for everything,

Michelle :jumpy:


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Sat Jan 24, 2009 9:53 pm 
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If we say that Lyme can be passed, can the co-infections also be passed? I do not test positive for babesia. So don't understand why hubby would be doing this if it's babesia related. I don't have any of the babesia symptoms either. Just wondering?


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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Sun Jan 25, 2009 12:43 am 
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Symptoms overlap way to much to divide what is what. I get this and don't have babesia....I think the division of symptoms lists are good guess work. My son seems to have Bart - yet his LLMD says, "Nope this or that symptom that seems like Bart is actually Lyme" Confusing... :dizzy:

This is so funny Gina...I was just wondering about transfering of co's myself. Same boat. My husband has Babesia. I have been tested at least 4 times through Igenex everywhich way possible and I am negative every time (Praise God) yet tonight, I have to admit, when he kissed me, I wanted to rinse my mouth with peroxide fearing babesia will be passed.

A very well known ILADS LLMD told me you can ping pong these diseases.....through kissing!!! Scary! :faint:

But I have tested pos for ehrlichia and bart and he did not...hmmm...I gotta find out, I will ask in the future.

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 Post subject: Re: Weird symptom - do you have this?
PostPosted: Sun Jan 25, 2009 9:35 am 
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I posted to this and it got erased so here it is again.

Dana i don't really have this now but i use to, noe i take 900mg of Neurontin at nite and it helps.

My 5 year old on the other hand has had nite terrors since he wz 1. His IGeneX test have come back positive, as u all know. His nite terrors r better now but they use to be HORRIBLE. He would sit up in his bed screaming mumbling stuff and calling my name but i could not console him he would hit me and push me away.

Now he does not scream a lot but he constantly wakes up and sites in his bed, with his eyes closed jerking, rubbing his head, pulling at his clothes and the air. He had an EEG sleep study done and what did it tell me, UHH that he ahs night terrors and abnormal brain waves at nite. I already knew this.

Now i know its all related to the Lyme. He has been out of control for the past month.

please pray i can handle him.

I have an appt. for him this week at Children's Hospital here, one of the best in the Country, with and Infectious Disease doc. I talked to her myself and asked if she believed in Lyme and Her words were very consoling. So I will update you'll and let u know how the visit goes.
I told her I'm not a dumb mom who knows nothing about this disease, I told her i am very educated and know the proper treatment.

pray for us

:prayer:

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