Does this sound like Lyme?

Hi, I'm new here and I'm not sure if this is the right place to post this, but I'm a bit disoriented right now and I apologize. I'll now type a boringly detailed and frantic explanation of my situation. And please read all the way through it. If you do.. Well... I'll be happy. That should be enough. I've been searching for answers for years.. :/

It started about 5 years ago, when I began to start seeing blue spots in my vision. I went to every form of eye doctor imaginable, and they found nothing. I was about 14 then, and It's incredible how much a doctor saying there's nothing wrong make just about everyone think you're just making things up for attention. So, I just decided to try and live with my new flashing friends, and do my best to keep quiet.
They seemed to go away a little (or maybe I just got used to them) and I lived day by day.

about 3 years went by, and I had "Ocular migraines" intermittently. Which, pretty much seems to me like there's an 80's disco dance party going on in my head, whilst my peripheral vision taking a smoke break and coming back an hour later. I was doing horrible in school, so I was diagnosed with ADHD. I was prescribed Aderall, and it did amazing thing for my in school performance. It gave me focus and blahblah. That really has nothing to do with my symptoms, but I feel it's important.

Recently, I've been thinking back to how I used to be. Energetic, with an amazing memory and a love for everyone and everything and always happy. And now, I'm quite reclusive and irritable. I act like an old man, and I'm 19.
I've been noticing irregularities in the way my body has been acting. Most of these things, I've just ignored and thought nothing of. But they've been piling up at an alarming pace and it's actually starting to worry me. Up until this point, I haven't really cared at all about the spots or anything else but.. I guess I'll just outright say I'd like some confirmation. A lot of these are weird and probably have no connection to lyme, or any connection that I seemed to find... But I'll put them down anyway. With of course, the company of my blue spots.

1. When I wake up in the morning, I've noticed that I am incredibly weak. Like old man weak. My bones ache, my muscles ache (Especially the joints in my hands) and the world just seems foggy. I can barely move my hands or grasp anything the first couple minutes after I wake up. Everything from my eyelids, to my toes seem to throb. And my movement seems sluggish and slow motion. This goes away after about 20-30 minutes. Also, I've noticed that my whole body seems to .. Vibrate sometimes.

2. Aside from my friendly "Blue spots"(and sometimes black), my vision altogether has just seemed to be... Fading? Like, I can see perfectly fine. I know my eyes work, and capture every detail of a room. But the way I perceive it seems to just be... dissolving away. I can't explain it. Instead of being able to look at a whole room as I used to, I feel like all of my vision is peripheral except for a very small area. I also sometimes feel a painful pressure in the back of my eyes, which almost feels like brainfreeze, but lacks the semi-pleasant joy that icecream brings me. -Also, I've noticed when my vision is changing from day vision to night vision, I have big 'splotches' of dark grays and blacks that seem to dissolve away as my eyes adjust to the difference.
-I have a horrible sensitivity to light. I used to be able to stare directly at the sun without even squinting.(I know you're not supposed to, and I only did it like twice so shush). But now, I can't so much as walk outside during a cloudy day without feeling as if every surface is made of a heatlamp. I squint wherever I walk, and look at the ground. I usually do this thing where I have one eye closed, and the other partially squinted. If I have both eyes squinted, it's too much light. And um... That doesn't really make much sense to me.
-Sometimes, when I close my eyes, I see a web of white. That looks like veins all strung around and threaded in my eyes. It gives me chills, and I hate it. It's scary..

-Also, I've noticed a lot more of those "swimmy things" in my eyes. Not the normal floaters, but those little tadpole looking squiggles you get when you look at the sky for too long. I remember there used to be a couple of them back a couple years ago. But now I have so many, I can't even bear to look at the sky.

3: I feel as if I am constantly in a mental fog. And, I can't really explain this one. But for all of those who've never had this happen.. The most I can say is it feels as if there is a physical goo inside my brain, through which my thoughts are transferred. And this goo is slow moving, viscous and takes up a lot of space. I can't seem to find my sentences sometimes. I feel lightheaded, and everything around me feels distant. Like I'm in a dream. Like nothing is real. Like, I'm just not even here. I feel as if I could do anything and it would have no consequence. But if even there was a consequence, it wouldn't matter because nothing is real. Or, so it feels.
And this has gone from sometimes, to all the time. And it seems to be going down the same line as depression. But, there is no reason I should have to feel depressed. I graduated high school and I have a good paying job. I'm about to move out, and I have a bunch of money saved up. I've had the same girlfriend for 4 years who I love, and I'm about to start college for nursing. Physically, I could not be on a better track. It's exactly what I've always wanted. And I'm just not happy. But I'm not sad either. I feel as if, just... Nothing. No happy, no sad. Just hi.
-I get bored of everything easily (I didn't used to be like that)
-I find 99% of everyone intolerably annoying.
-I've been so cynical and just.. bleh
-I'm so irritable 80% of the time.
-Whenever I get interested in something, it only lasts a maximum of about a week, then I move on.
I don't feel like me. I don't like this. I feel like nothing. about 4 months ago, I went to Island Of Adventure.
Rollercoasters have always been my favorites thing in the world. But now... They bore me. I found myself sitting on the hulk with a straight face, wondering when it was going to end so I could go buy a Dr. Pepper.
***? I remember having a battle with myself in my head, going "WHAT THE HELL ARE YOU DOING. YOU'RE IN YOUR FAVORITE PLACE, WHY DON'T YOU FEEL HAPPY. PLEASE FEEL HAPPY, FEEL SOMETHING PLEASE"
The only emotion I've been able to feel for months is.. Anger. I feel happiness sometimes but.. I don't know. Nothing seems worth anything to me. Even though it is. Factually, I know it is. But I just don't.. 'Feel' that. I can't seem to act against my instincts of this horrid feeling. Mood swings, all the time. From incredibly happy(rarely) to terribly depressed, to energetic to just feeling crappy. I can never sleep when I need to, and never wake up when I need to and.. It just always seems like my mind is working against me no matter what it is I need to do. Like right now. I need to wake up in 5 hours for work, but I'm here posting this regardless of what I know I need to be doing.
And aside from this gooey mental crap, I get constant head rushes. I feel like I'm seeing stars half the time. When I sit down, stars. When I stand up, stars. When i'm laying down, Oh, Look. Stars. Also, sometimes I get this weird itch in this one part of my scalp when I get chills. Weird.

4. Cold hurts. If it's too cold, instead of just making me shiver, it stings. It feels like millions of pricks all over my body with every cold breeze. And I've noticed, that my hands and feet are ALWAYS cold. Always. It freaks my girlfriend out. They feel as if they have no circulation whatsoever.

-Cuts hurt when I wake up from naps. Like if I have a scab or something on any part of my body, it'll hurt after I take a nap. A stinging without any touch necessary. My eyes also always sting after any naps. And my body as a whole stings for a bit too.

5. Random twitches. I have these sometimes, in my hands or feet or arms or.. Well body. Sometimes, my eyelid will just start and not stop for days. Sometimes my hands, fingers, toes. My face sometimes does it too. And my scalp. And occasionally, I get big jerks from my arms or legs or midsection that wake me up. But none of these ever happen frequently. Maybe once or twice in a couple months? I also notice, that sometimes my heart beats so hard I can feel it through my fingertips and toes. Like a pulsing. And I can see with every beat, there's just a pulse of a black vein in my vision.

6. Joint pain. All over. My joints hurt randomly. Usually my arms, and my wrists. And fingers and toes and tingling sometimes. For so long, I just dismissed it as that "Growing pains" crap that doctors and parents and relatives try and shut me up with. But there is no reason, at 19 I should be feeling this much discomfort all the time. I also get bunches of random chills.

7. The longer I sleep, the worse I feel. I can sleep for just 3 hours, and feel 100% better than if I've had a full 11 hours of sleep. If I sleep for those 3, I'll feel like my normal crappy self. If I sleep for longer, then I feel lethargic and disoriented all day. And just basically, retarded and achy. Shouldn't more sleep make me feel better?

At this very moment, my eyes feel like they're about to pop out of my skull, my head hurts, my wrists and fingers ache and my body is tingly. I feel this lingering energy in my back, and chest. And have this annoying ring in my ears. I'm seeing blue and black spots and blotches more. And white streaks. I feel as if an ocular disco party is about to begin, So I guess I should stop typing.. For now. I think I left a lot out, which I surely will add later. But for now, please. Answer me. Even if it's a "Shut up and read the other posts on the forum", at least rudely send me a link.. Or something.

I've been searching for answers for years, and this is the first time I'm publically asking anyone for help. I have a doctors appointment in 2 weeks (It's the soonest I could get) so please don't go and tell me "o u ned a dctr k."
I need some direct advice, that someone can give me reading what I just wrote up there. ^^^

I'm getting steadily more frantic as I type this because the white background of this website is making my eyes do all sorts of crazy. Please help...

Thank you in advance for all your responses, it means so much. (See? Now you're committed)

Post Edited (Carlelly) : 3/15/2013 1:17:36 AM (GMT-6)

It means a lot to me that someone would read all the way through that.
You were mentioning it could be other things too? Well, what could those be? It's so hard to find anything related to my symptoms anywhere, but I can assure you they're godawful.

And yes, I'm in Florida. I used to go to IOA all the time, and it just cheered me up no matter what. And now bleh, I live within driving distance of 5 famous amusement parks and I'd really like to actually 'like' them again.

I would suggest you get an MRI/MRI with contrast. General 'pressure' on the spinal column,
or brain case can cause all the optical and migrane issues you mention.
Classic migraine (which I beleve I've had) consisted of sensing the issue coming on before any actual visual issues; the precursor sometimes just felt like a coldness in the upper forehead, and strong wish bright light. Instead of 'blue' spots, I would tend call them small 'blank' spots,; and with 'lights off' I would see zig-zaggy like bright border patterns around my view- no physical (headache) pain.
For an unknown reason, I found daily kelp pills, and Mg-Ca Vitamins kept issues down. Leave off the supplements, and in about three days the 'issues' would surface.
I say, unknown reason because after 20 years of intermittant issue as described, things got worse. Eg.: Numness, and mild paralysis on my left leg. There was no reason to connect the leg issues, and the other issues; how I 'sat' (posture) had an impact; some car seats (toyota trucks) would, in a delayed fashion, makes these worse. The 'posture' could be described I believe as putting your spine in a 'Shape' with your head forward, shoulders forward, and your belly back... kind of a 'compression' top to bottom on your spine would do it.

So what did the MRI show? After a regular x-ray showed NOTHING, and after doctors wanted to give me a lower spine shot, to treat (what they figured would be a pinched nerve around L1). Blood flow in my skull showed a HUGE amangioma; a benign growth outside my brain, like a large fried egg was sandwiched between my upper rear skull bone and the brain case. Thus, the entire area was under pressure. Putting my spine in an 'S' pattern would increase the pressure. What was being 'compressed'?Everything. Nerves that left the braincase at the bottom of the skull were being impinged, and, probably nerves heading for the eyes.
Have you had an MRI with contrast?

Hi Carlelly,

I've had all the symptoms you mentioned.  For instance,  my eyes have seen it all...back spots, white spots, zig-zags, bursts of light, white shadows, black shadows, peripheral vision, jumping eyeballs, eyelid twitches, stabbing pains, etc.  My in depth eye exams shows nothing unusual.

I'm sorry you are not able to afford good exams.  Breaks my heart.

From my experience, taking a fluoroquinolone antibiotic (ie; Levaquin, Cipro, etc.) or taking a benzodiazepine (Xanax, Ativan, Klonopin, Valium, etc.) can also cause your type of symptoms .... almost exact symptoms as lyme's disease and the co-infections.  It is easy to find out about the side effects of these meds online via forums similar to this one.....that is if you have taken either of those drugs.

There are 2 groups of LLMD's.  Make sure you only see an ILADS lyme doctor.  There is more info on pages 1 and 2.  I made the fatal mistake of seeing an IDSA LLMD and was shown the door AND wasted my money. 

Good luck.  There is great support on this site.

Patty

 

Hi Carelly,
No, the 'posture' thing is not "blood flow" so much.

Your brain and your spinal nerves are actually 'together' in a protective 'sack'; a sack that, besides being 'immunologically' privileged ( meaning: the usual antibodies in lymph etc. cannot go there), and means that 'pressure' put on the 'sack' in your spine also puts pressure on your brain. It's all connected.
Anti-inflammitories (eg. Ibuprofin, 4 at a time) helped me alot; ringing in the ears also subsided. Your brain can take the pressure, but at various nerve 'exit' points and constrictions, nerves in entire packets can be squished. Squish points, as I said, are typically around optic nerves and the constriction right at the base of the skull where the nerves enter the spine. Memory issues- intermittant- mood issues- ALL are on the table. Apathy, and sometimes zero-to-***** mode was common.
My tumor was not 'inside' the brain sack but was sandwitched between the skull and the sack at the top, rear right of my head; as I said, like a very large fried egg. Amangioma's are common on children's faces; but are not uncommon in the location of mine. They always start on the outside of the brain, but can 'push' or 'spread' anywhere the brain tissues allow deformation. The volume of mine was larger than a lemon. They are benign and very slow growing; but similar to Lyme's, if it goes on and on - undiagnosed, then it is NOT really not benign. I have no doubt it was their since birth, as some of my symptoms (un-able to be coordinated e'nuf to pull my feet together correctly in a frog-kick for instance when I was 12 years old). Had zero to do with Lyme's.
It was remove surgically when doctors gave up trying to find 'pinched nerves' in my spine causing numbness to my left side, and when I was insured to the hilt. $300k and a year and a year later I was back to work.
Uninsured huh? Hmmm. Please pick the best University Medical University in your hood, and present your self to the emergency room on a tuesday morning. If you have to hop a train for 100 miles: do it. Do not spare ANY of your symptoms- eg. if you have ever been weak, or numbish, the place to reinact, fall down is there. Head aches ever? That would be the place to groan in agony. (Get the picture?). Hospitals or Institutions that have the term "Stereotactic Radiosurgery" have the equipment, deep pockets, and brain surgeons to easily deal with you.
Don't forget what the Republican front runner offered up in place of Obama Care: "If they get sick, they can go to the Emergency Room, and they will be treated".