neuro lyme, feels like I'm dying

And going crazy all of the time.
Diagnosed in 2006, abx for 3 mos., doctor said I didn't need them anymore, asymptomatic for a year or so, then whapped with illness that has progressively gotten worse.

First, the night issues. Sometimes I wake up from a dead sleep (used to be only when I ate gluten, now happens randomly) and it feels as though my heart, brain and lungs shut off all at once. A terrifying stillness. Then, I get a giant headrush that travels through my entire body and my heart starts racing and I can't breathe very well. It feels like my brain is trying to burst out the back of my head and the pain moves from my neck to behind my eyes to the base of my skull very quickly. I get chest pains. My arms and legs are shaky and weak. My stomach becomes very bloated. My neck makes these tiny little electrical-sounding cracks and I get horrible tinnitus. I hear things in either ear, like shrieking or banging. Also I'm exhausted but every time I fall asleep/pass out I have these racing, terrifying dreams and my brain does that jump/whoosh thing and I jolt awake. This lasts for about three hours and every time I'm thinking "this is the end, this is it." I thought it was a panic attack, but I feel too crazy and my brain is too weird and it lasts far too long for that.
During the day, I feel completely out of my body. Like I am hovering three feet above/behind my head but I am still looking through my eyes, very surreal. It feels like someone else is controlling my mind. My words are not my words, my hands are not my hands. When I speak my voice is far away and unfamiliar. I look in the mirror and feel like the person in there has taken my mind and my healthy life and left me with this scary, unfamiliar and unworking brain. My mind races with thoughts that don't make any sense, and then sometimes I will come out of a daze and think, "did I even have any thoughts at all during those ten minutes?" I have no creativity, Lyme has taken that from me. Regular noises terrify me- the phone ringing, dishes clanking together, a car horn. I have to tell my body to perform simple tasks. Move arm forward. Breathe. Turn head to the right. I have no sex drive, I produce no hormones. I am 23. Lyme can be a lonely place, anyone else feel like this?


Klinghardt protocol- Quintessence, artemesia, mimosa pudica, probiotics, omega 3 fish oil, magnesium, b-complex, chlorella, cistus tea, r-lipoic acid, Core minerals, Intestinal Movement formula, Vitamineral Green, folic acid. Re-evaluating soon, but the appointments are expensive.

I have nero issues also, my life just went downhill with this disease. I am 37, feel like I am 80, and I look like a different person. My eyes are sucked in, I have a rash all the time, I am sick all the time.

This disease will tear us down, try to break us each day. Tom is right, the only people that understand us completely is sick with Lyme.

I hope you start to feel better.

justme

Hanna Rose, I hate you are dealing with this at such a young age. I'm much older and also feel my life is being robbed. Your words sound like they could have been written by me. I have severe neuro problems which has resulted in my living in this bed for too many years now. I pray you get well.

Thank you, everyone. Just to know that I'm not entirely alone is help enough, for now.

Hi Hanna Rose,

I am very sorry to hear how sick that you are. My daughter had many of your symptoms, and she suffered terribly. Tom@Ocala is right- unless you've had the illness, you don't understand what its like. I therefore have to admit that I don't know what its like, but I was forced to helplessly watch her suffer so terribly. That carried its own kind of torment.

I just want you to know that there is hope. My daughter was sick for 5 years, but she is healthy and well today. She is able to resume life as it is intended to be lived. I know that when things are at their worst, that it is hard to have hope. We are here to help you to remember the hope that you have.

Don

Hanna - absolutely not making light of what you're saying. I have neuro Lyme, too, so I understand.

However, a portion of what you're saying could be explained by sleep apnea. Have you been checked for that? I wouldn't discount the idea that Lyme could cause sleep apnea. It screws everything else up.

I have sleep apnea, and if I try to sleep without my CPAP, I get a bit of what you're describing.

Are you seeing a LLMD (lyme literate MD)?

Hi Hanna Rose....................just read your post and I so understand you. I have had the same experience too the neurological stuff is so scary. I sorry you are so young too. I am 49 and it has been 2 years trying to figure out what is wrong with me. Finally into treatment for 7 months and it has been rough. I understand and you can always talk to me cuz I know how scary it can be. It is like a monster is really inside us. I keep you in my thoughts and prayers with every one else on here. Some times my hands don't want to work and of course my brain takes forever to get anything do. Hang in there and cherish the good moments. Thanks for sharing it helps us all that think we are alone. Which thanks to this site you are not!! Andy Cotton Candy

The neuro side of this disease has been the scariest for me. I can deal with my body and joints wasting away, but when it takes six hours to find your car keys, thats when you know the disease is winning.

Tom@Ocala,

No apology needed- I knew what you meant. You sound like quite the jokester, and keep everyone loose around here!

Don

Hanna Rose- I am from Washington State too! I totally understand. I have the same problem with my Drs. I quit and now drive to Oregon. If you want to talk you can email me I have found another WA State person on here too that I talk too........We will hopefully get this state to wake up!! Andy

opugirl- I sent you an email. Thank you!
andy cc- your email isn't available on your member page, how do I email you?

Andy, it still says your email is unavailable!