I thought by sharing this information here, it might help others?

Below... way below... is a partial symptom list dealing with my eyes. I don't have all of the symptoms all of the time.. it varies... and now I know there were many things I "wrote off" and blamed on something else.... and they are not listed here on the list.

For example...

I have noticed that now I "hate" to read. I actually LOVE to read.. and I collect books... but not anymore... and it is sad to me that I lost the ability to read.

Normally when I have a "hate" sensation.. it is because I "can't" do something anymore. MY brain responses are off a bit and things like emotions don't register properly all the time...

Actually, I think I like the word "hate" a tad more than "can't" ... keeping in mind, neither word was a part of my vocabulary before Lyme. Both words in my opinion should not have a place in my world.

Anyhow... I was diagnosed with:

Severe something... darn that brain...

Oh.. severe convergence disorder.

Extremely dry eyes.. some of the worst.

Post concusion syndrome (big word for headaches)

No night vision

Bad depth perception

Blah blah blah...

Other things, can't remember them all right now .. but not important to this discussion.

OK...

Convergence disorder-

I started seeing or feeling "foggy" here and there.. and sometimes blurry... and sometimes double.. or what I called one and a half vision. IMPORTANT to note it may not be Lyme brain fog.. or neurotoxins causing the foggy stuff.. but an eye problem. I missed that and so did everyone else.

If I would try to read I would have to strain and squint... and then if I looked up I couldn't see distances.

I got so bad that now I can only read one line before I "blow out my vision" (I don't know what else to call it). So now I turn away from anything I might be tempted to read. This is VERY limiting for me... annoying... and life altering. Hard to shop for food... hard to drive.. hard to walk.. and no fun anytime else.

So... I stopped reading except on the computer.. and my screen was special made several years ago because my vision was so bad. My computer screen is the size of a small car. OK... Not really THAT big.. but close.

I made myself completely stop driving at night for the past few years because it is so bad... which really puts a damper on activities.

What I was told- my eyes are seeing two different things at one time. The right eye sees and tries to focus on one thing.. and the left eye tries to focus on something else because it isn't working WITH the other eye. They won't work together, plain and simple.. but I didn't know that.

This puts a BIG strain on my eyes.. my brain.. my energy limits, my ability to do things, my frustration levels, etc. etc.

What is happening now is... My brain shuts off the images from my left eye and won't forward them to the brain to disect and utilize. Kind of like an eyeball "sit down strike"! hehehe

While doing the tests at the doctors offices, I couldn't do them sometimes unless my left eye was closed. To me that was a normal thing to do... and it was how I was compensating all this time.. but doing it indicated problems.. cause that isn't "normal".

Also when I was testing at the offices I would see what looked like a lunar eclipse in some of the tests...

While looking at something, my right eye would focus and my left eye would get a sort of dark moving ball from the inside of my left eye moving towards the outer side of my left eye.. slowing blocking off my vision. I never saw that before.. it must have been faster or I wasn't paying attention to it?

I only knew something was wrong but no one ever caught that problem before. It was blamed on Lyme but no one ever gave a reason or explanation... or told me I could get help to fix it.

It is actually a BIG problem and explains MANY of my symptoms and inability to do things. It is often seen in folks who have ADD (Attention Deficit Disorder) and other problems.. and can be the CAUSE of those problems.. especially in children.

I have stopped driving at night... had to stop driving in the rain because of the water on the windshiled and the movement of the windshield wipers throwing my vision off.. etc.

My most recent new problem... or one that finally got me frustrated was.. I can't function well on a windy day. DUH.. that seemed stupid to me.

I felt "beat up" after being outside on a windy day... even if I wasn't IN the wind I was exhausted and headachy and icky in a short time.

I now think the moving trees and leaves and everything blowing around made my eyes ... which are focusing on two differnt things at one time, remember... well it made everything worse.

I was trying to focus on everything as nomally I would with this problem... but everything was always moving when the wind was blowing... and it was making it much harder to focus and respond. I even blamed the ragged feeling at the end of the windy days as being sinus related because I though maybe pollen was being blown around. Sooooo... I am pointing this out because I wonder if others are writing off these symptoms as something else also?

I was ordered to do a sleep apnea test, a bunch of blood work to rule out other things, an EEG, and an MRI of my brain. I considered it and made an attempt. My first test was the MRI.

It was a wicked disaster and set me back nearly a month. I reacted to it like some Lyme folks do.. but this was HORRID. I described the pain afterwards in another post as feeling like I was giving birth to a 40 pound bowling ball through my left ear. And I wasn't exagerating. NEVER AGAIN. The next MRI that is ordered for me will be on my corpse! I still have a slight headache and am weak... but I am improving slowly from that diaster.

I am just now getting back to my "normal crummy"... and I am not doing the other tests. BIG time insurance problems involved.. and HIGE stress trying to deal with it all....

OK.. I am sorry this is so long.. but I was able to miss all this in myself.. and all the doctors missed it in the past.. and I wonder now if others are being missed? Hopefully someone will see something they relate to here and will get help.

Good news.. there is help. They think I can do MUCH better functioning and will be much more "normal" if I get the new glasses and do "vision therapy" to retrain the eyes and brain to work together.

Soooo.. if you are diagnosed with these problems... there is hope.

Unfortunately the vision therapy won't be covered by MY insurance... and neither will the glasses. The doc said most folks have vision training for 12 weeks... about once a week... with instructions to do at home.

He said I would need a minimum of 24 weeks... due to the severity I guess? The trip would be a 2 hour drive one way.. two hours back. VERY hard on me... Soooooo... maybe someday?

But you might have a closer place to help you. So.. do look into it if you think this may be your problem. They are SURE the therapy will work.

Hope this helps someone down the road...

Here are some of my eye problems... just for reference.

By the way... they asked me why I waited so long to get help...

HA! They KNEW I couldn't even park my car between others on the street... couldn't read a book.. was really limited in many areas by the test results.. etc... and wondered how I was functioning alone by myself all this time.

I told them after having multiple tick borne diseases and getting hit by a truck it was taking a bit of time to come back up and I could only address ONE thing at a time.

They smiled.

Sensitivity to certain kinds of light, such as:

A. Flickering light by fluorescent lights- causing panic attacks, misery, violent behavior, craziness, crying, or other inappropriate responses

B. TV or computer screens sensitivity to where I can?t watch them or use them

C. Headlights of oncoming cars or shining reflective lights hurt eyes and confuse me

D. Halo?s around lights, especially headlights, and reflective street signs

Poor judging distances and depth perception

Driving and reading a map- no can do. If straining to see small writing or actually
normal writing (even for only a minute).. my vision is very blurry for about 15-30
minutes and I can?t focus on anything past close up and my eyes hurt and are very
sensitive.

Difficulty switching from near to far vision. Delayed reactions.

Swelling around eyes and eye lids

Eyes water for no reason and light makes them water more and hurt

Pain in eyeballs

Left eye watering only sometimes

Can?t focus if even a tiny spot of dirt is on the windshield or on my glasses

Blurry vision with foggy overcast.

Squinting a lot even with glasses

Double vision

Mashed vision- or distorted words and lettering. Looks like a word was written on top of a mud pile and someone sat on it... that is how it looks to me when I see it sometimes.

Floaters- triangle shaped or rectangle shapes- dark box with dots inside on clear
background- white, silver or black colors

Eyes feel like sand is in them and they ache

Glare from anywhere makes me want to bury my head in a bucket

Yellowish, greenish, or white discharge from eyes sometimes

Foggy covering over eyes

Can?t focus far to near and back again- sometimes all day long and for several days
Like looking through a light white film over everything I see.. no sharpness to images.

Left eye can?t turn to the left sometimes

Dark circles (sometimes purplish color) under eyes and swelling or puffy

Real red on the inside of lower lids

Transient blind spots in the center of my vision

Sensations that the light is fading out or getting dull

Argyll-Robertson pupil- left side

Unequal pupils.. I feel ?out of it? when it happens. Like non-responsive?

Pupils don?t always close together at the same time

Sunlight hurting eyes to the point of pain, tears, dizziness, and nausea

Left 1/2 of vision in left eye gone sometimes

If the room goes dark I fall to the floor. Can?t stay upright. Can?t walk thru a dimly lit room without swaying and tipping over or bouncing off walls. Must lean on walls or
hold on to things.

Red or pink in the white part of my eyes.. sometimes real bright and noticeable.

Eyeballs hemorrhage and fill with blood and it lasts weeks till it clears up.

Most recent... just before a herx and most recent brain swelling my eyes started seeing
things as mashed ...and in general I only had about 1/4 the vision power I normally have.

This continued for about 10 days then cleared up like someone turned on a light switch.

Lines of words on a page curved in the middle... like looking at a straight line but it is in the form of a smile.

Examples of eye problems:

I need at least 3 pairs of glasses for different distances and then 3 more for light/dark use.

My eye sight was 20/10 prior to all this. I can?t focus if even a tiny spot of dirt is on the car windshield or on my glasses. I keep window cleaner and towels in vehicle to
constantly clean windshield. My eyes will focus on the spot of dirt on the windshield
rather than what I am looking at while driving... and then my eyes go back and forth.. like a camera while trying to focus on a close up flower and the background scene at the same time..zoom in and out and in and out... fuzzy close or fuzzy far away.. constantly moving.

I try to ignore spots but it seems I am drawn to them or can?t focus on anything but them?

The Bridge cross bars overhead.. or traffic cones.. I get a weird feeling, hard to describe.. like I am sinking and low to the ground. As if the bottom of the car is
at road level and there are no tires on the car and my feet will start dragging the ground if I don?t lift them up.

Mirrored walls make me fall flat out on the floor or loose my balance. Clear glass
windows in a wall make me loose balance/orientation. I am the life of the party without a drink!

In a shower the balance is lost if printed designs are on a curtain. Can?t stay in shower without getting panicky feeling. Had to change to opening the curtain.. then to solid white walls and curtain. Can?t close my eyes in the shower without falling into the wall.

Sometimes I have to look at my arm to make it move where I want it to go.

Upsetting for some reason to look at small patterned designs or stripes. I get a ?hyper?
feeling or dizzy or both?

If the sun suddenly goes behind a cloud.. sort of dodododo dodododo freaky feeling. I
get spacy or something?

Venetian blinds and sunlight coming through them make me nauseated and/or
disoriented. I feel as if I will fall over out of a chair.

Barrettes hurt my head after a few minutes (bruised and mushy feeling, severe pain) and
make my muscles spasm and neck pull and messes me up for days. A nickel in my back
pocket feels as if I had a poker sticking me in that spot and then that leg cramps, then
back hurts, feet hurt, and muscles spasm all around that area. Same with a belt, bra,
anything touching my body. Princess and the pea to the extreme.

Earrings and the ear pieces on my glasses make my ears feel as if they are on fire and are
lopsided sometimes.

When the brain swells I can?t stand to have anything touching my head or face. I feel as
if I am cross eyed sometimes but never bothered to look to see. I have to close my eyes a lot to keep the pain down.

Can drive a vehicle with shift knob.. holding onto it all the time to keep more level or
balanced. It is difficult trying to drive an ?automatic? vehicle because I don?t have the
stick shift for balance.

I use an ear plug in my left ear when driving and don?t remember to down shift gears
when needed. I don?t know to shift gears or where they are if I couldn?t hear the engine.
In other words, I must use ?hearing? as an ?automatic? guide as to when and WHERE to
shift?

I LISTEN to TV instead of watch it.. and mostly I listen to old reruns of familiar shows or listen to movies over and over because I can?t follow the new shows by just seeing them. I hear TV... and know the characters that way.

When tested they found out I don?t recognize peoples faces. I notice it because I must
hear or see someone walk or move to know who they are.

I have so many mixed emotions after reading your words...

I am amazed that you are dealing with so very many extremely painful and debilitating health issues-

and yet, you don't seem to whine or complain about the unfairness of it all-

your concern is in trying to help others with similar problems-

you are an inspiration to me!

I also feel so very sorry for your struggles never the less-

even more so- I believe- because of your goodness and kindness.

I wish that I could do something to take your pain all away.

I am afraid that all I can offer is my empathy, compassion, and support.

I do hope that things begin to turn around for you soon-

If anyone deserves it...you most certainly do.

Best as always, Melanie

I think I have most every symptom you describe - I also didn't really relate it to lyme until the past month though.

I had an eeg last week and thought I'd go crazy when they had me close my eyes and they had those flourescent lights going - I was having an anxiety attack, I couldn't figure out why lights would cause that.

I'm printing off your post to show my doc. Please keep us updated, and I do hope now that you know what is going on that it makes you feel somewhat better. You are such an amazing help to everyone here!!!

I love to read and suffer greatly if I lost the ability to do so.

I just recently realised how morose I have been all my life.

I came across a book of Shakespeare's plays. It has 23 of them. I have in the course of my life read several of his plays.

But I just realised I never read one of his comedies. So I have taken it upon my self to read Much Ado About Nothing.

But back to you,(sorry I tend to do that) your info will help keep me aware of the onset of symptoms. I do tend to brush things off.

I did pass out at work three times and once at home before I let my wife convince me to go the hospital.

Sent

Only the things she has mentioned over the years are what I have to go on anymore, since she only talks about dad's issues...
but she has had night vision issues (since I can't remember when)and will not drive at night ever! I also have this problem...

along with the headaches and high blood pressure, asthma, and others I can't recall..
I have had many other Sx's you listed...
TY again, I will make sure not much time elapses before we identify what mom's issues are ....concerning Lyme -co's and treatment!

Wow, what an impressive list you got going there. You truly are the camp leader around here. Look at all you deal with, and I know that is ONLY some of it, yet you continue to share your experiences and knowledge.

I must admit, many of those symptoms I have too. I have real problems with my vision also and have problems with spots that distract me, windshield wipers, etc. seem to distress me too.

When I was having trouble driving there for almost a year, I realized that my eyes were going all over the place and that was why I couldn't drive. I was distracted so easily and I couldn't get my eyes to focus properly on the road.

I am not quite sure what happened that I can again drive. I do know that the anti-virals I am taking do help whatever is going on inside this crazy body of mine.

I hope that you can retrain that ole brain of yours and your eyes to do what they are suppose to be doing, so that you can do the things you enjoy once again!!

I wear glasses to use the computer. When I take off the glasses and look away, my head gets really foggy. LLMD said it's yet another
Lyme/coinfection symptom. Who knows...

How extraordinary a person you are, always there offering hope to others.

You never say, "Why me?"

I feel honored to even be in your company.

Humbly,

I have a lot of the same eye symptoms.

I printed out your list and will return w/

some leads on possible solutions, things to

do, most of which you probably know anyway,

but I'll post them anyway.

For now 1-2 things:

1) Halos around street lamps:

The late Carlton Fredricks, radio

nutritionist, WOR 710, am dial, once spoke

of people seeing halos around street lamps.

He attributed this to a vitamin A deficit.

There may be other causes, but thats all he

said.

Before lyme, I had this, heard Fredricks, and cured it with

dietary supplementation, that included

vitamin A.
Tonight I'm going to stare at some street

lamp(s) to see if I see a halo of light

around a street lamp.

The test I'm going to do:

1) View a lighted street lamp at night with both eyes, then;

2) To test each eye, I will cover the

opposite eye. and see what I see.

See website for Jerry Hickey, pharmacist, of

Hickey Chemists, NYC the url escapes me.

On his radio show he often talks of eye

problems and supplements to take, and

studies on the eye.

I haven't been there to his site in over 2

years, as his site was up and down, and his

radio show was switching stations so I lost

track.

I heard Hickey on the radio one day last

week,so he's back on the air.

Back later, and will post leads to this post in an on-going fashion.

Thanks for the responses..

I have to get to bed ASAP cause I need to get up early in the AM.. sooooo...

I will respond later... otay?

Made it back from long trip..

But now I am too tired to think!

I'm here Huckleberry!

But right now I am on my way out to the docs.

You know.. changes in latitudes..

Changes in attitudes...

Will catch you and this post tonight... otay?

Thanks for the JB thoughts... now I will be singing all day about the one who went to Paris looking for answers to questions that bothered him so...

I thank everyone for their kind and informative posts. Not to worry about me.... I just post stuff here and there so others may get some ideas and maybe be able to get help and do better.

I just got lens put in my old frames for close up seeing. I am wearing them now. I am having some problems if I move or don't have the material at exactly the right spot to see it best... but if I be completely still.. things are much clearer.

I will go back to the glasses place and see if they can adjust them somehow so I can move a bit and still see?? I hope this works...

Hey down under...

Yes... you are right. It IS amazing what you can get use to.... But once problems are identified it helps. I can now figure out some of the whys in my limitations and deal better.... and try to fix them. Keep in mind... I am one of the not so great cases here. Everything a duck could do wrong they did. Sooooo.. hopefully with education and catching stuff early... things won't get so ruff for folks.

Hey mile high in the Rocky Mountains...

What a sweet note. You should write sonnets or poems... you have a way with words. But not to worry...

You said..

"and yet, you don't seem to whine or complain about the unfairness of it all-"

The unfair stuff I see everyday are others who are subjected to the side effects of Lyme... idiot ducks, uncaring family or friends, insurance companies who make you fight while you are down, LLMDs being harrassed and worse, etc. I whine and complain plenty about that... and don't seem to get anywhere most of the time when I do.. but once in a while... there comes some satisfaction and progress.

Lyme will take me kicking and screaming... for sure.

Hey AK...

I went to your place and copied off a symptom list I found under the toaster. You really should check that place out more often. I found 14 dollars, a butter knife, and a pair of scissors too! hehehe

Sorry to hear you can relate THAT well to the list I posted. But now that you know... maybe it will help. That was the goal... so thanks for jumping in to let me know.

You said... "I had an eeg last week and thought I'd go crazy when they had me close my eyes and they had those flourescent lights going - I was having an anxiety attack, I couldn't figure out why lights would cause that."

From what I understand they try to cause a seizure? That is why I said no thanks to the test. I already know the florescent lights bother me in every day circumstances... I REALLY don't want to play that game.

Plus... from what I had heard.. and have not checked into... they can grab up your drivers licence if you have seizures? Hmmmmm... that didn't strike me as something I wanted to experience either. Do let us know how your test came out. I am sorry you were put in that type of stress. Hopefully the results will be positive and you will be able to address whatever is sent to you by way of the results.

Glad you are sharing the post with your doctor... kinda? As long as it helps YOU... go for it. Hopefully they will then be able to ask questions of others too and help them? Let us hope so... Thanks for the kind words... gee whiz...

Hey sent...

Hopefully you can keep a check on your sight so it won't get worse.

HA! You read the man! Woah.... and on purpose? Good for you!

I told my college English/composition teacher... when asked what would you tell Shakespeare if you could... I said I would smack him on the back of his head and tell him to talk right...

I said I would tell him to make sense when he was speaking and folks might actually think he was worth listening to. I am VERY happy to see he wrote stuff and actually made some folks happy with his words... but he mostly gets on my nerves.

But that isn't really hard to imagine if you know my favorite book of all time was....

I do not like green eggs and ham... I do not like them Sam I am.

You said..

"I did pass out at work three times and once at home before I let my wife convince me to go the hospital."

Hmmmmm... good for your wife! Sounds like she is a smart one.... I do hope you still aren't that stubborn... and I especially hope you don't pass out anymore. Not good. You ok now? I do hope so...

You mentioned reading the comedy, Much Ado about Nothing..

Is that the book Bumsteere and Dattwyler wrote about Lyme disease?

Actually... it would be cool if you would do a short translation for those of us who don't speak Shakespearezze. I have no clue what it is about... now you have me kinda curious.

OK... break time...

Thanks to all for responding...

I was going to hit the hay early tonight.. guess I blew that! Just noticed it is after one in the morning... Soooo.. WAY past pumpkin time... and you KNOW I am not responsible for what ever I say after pumpkin time... hehehe

Livinlyme..

Sounds like the whole family is livinlyme... GEEZE! Not fair. I do hope this list will help identify things for your mom and you.. and all the others. Glad it could help. Keep up the good work.. but...

Take care of YOU!

OK?

Hey Christmas angel Barb...

I was sorry to hear about your symptoms matching the ones I posted.. but thrilled to hear that some are getting better. Good point about the antivirals.. we need to consider lots of things could be going on.. or on going.

Perhaps you could check into the convergence disorder as a possibility? I am not sure all of what goes with what.. but I think the spots on windshield... wipers, etc are part of this problem. Maybe something could be done to help you? I do hope so. We tend to put up with a lot of weird stuff.. so don't let it get worse if you can help it. Otay?

And I hear ya... that ole brain of mine.. gee thanks. Yes.. I might get it retrained... but I hear they serve the generic brand of puppy chow at the training facility... NOT good....

Thanks for the kind words... goon.

Lymelight..

You said..

"Tin, can you describe what this "retraining" entails?"

First.. I know you are new.. but we do have a number of rules around here. We must address each other respectfully for one.

My name is Tin CUP.. not Tin can.. not tea cup.. not tin foil... not aluminum foil...etc. I have had to boot some of the others out of here for name calling in the past... and Tin can was one of the names I was called when that happened.. so watch yourself. OK?

hehehe

Retraining is some sort of eye brain exercises.. and they didn't say what. I was to get instructions when I started brain training school... but I have not gone.. so I am sory I can't share yet. If I go I will be happy to let you know.

But... my chiropractic neurologist seems to think it is some sort of follow the dots with your eyes things... like with a computer program... and such. He already has me doing some of this... so I will try to find out more later. Sorry I can't say yet.

I was given the test you described too... that was the first one they did. I did a mess more tests... over an hours worth or longer. I can't read the number results on the record I have here... and I was trying to behave myself at first and not beat them into the ground by asking TOO many questions...

Ya know.. take a look see at the links for new members below. Look into a chiropractic neurologist if you want.. they sure help me.. and others. Perhaps with your symptoms they could assist you to function better?

Here goes...

Links for new
members

Good luck Lymelight... Let us know what you find out. OK?

xxxxxxxxxxxxxxxxxxxxxx

Hey all.. I am trying to respond to everyone tonight.. but am loosing ground fast. Just too tired to keep going for some reason.

I am soooo sorry.... but please know I am not trying to ignore the last group that posted.

I will get back and read and think about the responses... and respond to all. But I will need to try that later... I just won't make it now... Hope you understand?

If the creek don't rise... I will check back tomorrow night. And I will come HERE first so I don't wear out before I get done.

Later gators.. thanks for understanding.

Sorry to hear about all of your problems. Hopefully they will start to clear up soon. Do you have Encephalitis by any chance? Just wondering as that is what is causing most of my eye problems. I have no peripheral vision left, both optic nerves are damaged, have glaucoma and the beginnings of cataracts (at age 46 - yikes!). Besides my glasses for distance and bifocals, I now need to get a pair for mid-range so that I can see the computer.

What I wanted to bring up was this. I was recently put on an oral drug called Plaquenil. While on this, I have to have Visual Field tests done every six months. I have already noticed slight problems with my eyes. Anyway, I just wanted to bring that up in case someone else is on the drug and having some eye problems too.

Take good care of those baby BLUES, GREENS, BROWNS? Hope things improve soon.

I have a great many of those symptoms too,
and was recently diagnosed with cataracts. But as you mention, the symptoms come and go (I don't think cataracts come and go.)

I also have one strange symptom that no one else has ever mentioned. When I am reading a book, sometimes the black letters change color. Not all of them, maybe just a few initial letters go red or turquoise. But sometimes the change to a variety of pastels at once - yellow and pink and light blue. The background stays white. Just out of curiousity, does this happen to anyone else?

Anyway, it was only last week while readin this artice http://www.neuraltherapy.com/a_lime_disease.asp
that I connected it to Lyme, (which I was already beginning to suspect for most of my problems.)
Quoting from the cranial nerves section of the article:
"Eyes (II, III, IV, VI): decreasing and changing eye sight (fluctuates during the day), light sensitivity, floaters;"
(I was diagnosed with cataracts, I have floaters, light sensitivity and fluctuating vision; and sometimes I see black and white things in color.)

I do know about eye exercises - in the Western world they go back to Huxley. Deepak Chopra has brought us some from the Ayurvedic tradition. And they do help.

Yes, I'm a newby; I don't have a LLMD; but I'm sure enjoying your board. Thanks, one and all.

First of all, if you don't have a good lyme opthamologist, then send me an email and I will get you contact info for mine. My lyme opthomologist had/has lyme and has helped remove many of the nasty symptoms that I had in the eyes.

I continute to have severe sensitivity to computer screens (CRTs) and flouresant lights. I am even highly sensitive to certain LCD screens, which is almost unheard of. But, most don't know that there are 2 different types of backlights used in LCD flat screens, and they are both flourescent bulbs, so they flicker. So far, the one that causes the least nausea, pain, and anxiety (like I want to look away in a really urgent manner) is the Dell 1900FP, which is made by Samsung (191T under their model) in their Mexico factory. They won't tell me which backlight they use though.

Lifeline...

Jeepers creepers... with all the nice things you said... looks like I might not be able to call you a big old corn fed Missouri mule like the others ones here. Now cut that out!

You said..

"You never say, "Why me?"

Early in the game I did ask that question...

I never got a real answer... I am still checking out the possibilities.

Now I focus on the question...

Why so many others after all this time?

My thoughts are that I really don't think it is the ticks and Lyme causing most of the problems.

I think it is the duckheads that KNOW better and yet they let people suffer while trying to cover their big fat duck tails.

This gives me a direction....

Not standing still... but constantly moving forward to find justice, try to get the ducks to do right, and offer a helping hand as I am able.

It keeps me from stewing in my own broth and feeling sorry for myself. In an effort to help others I am able to help myself sometimes in the process... which is a good thing.

And I see so many others here who continue to reach out to others, learn all they can, and move forward. It does me good to see that happen. I think you will make big things happen. For sure....

Diffy Q-R-S-T-U-V-W-X-Y-Z...

DUH... Vitamin A1... no.. vitamin A.

A1 is a steak sauce don't ya know... silly me.

Why didn't I think of that? GOOD idea. I had taken it a long while back... and completely forgot till you mentioned it... THANK YOU!

I gave mine to a friend with cancer... and for some reason forgot totally to ever get more. I am gald you reminded me... it will be on my shopping list.

How did the halo experiments turn out? Interesting!

Well fiddle.. my head is not happy and I need another break. Back shortly.

You're absolutely right...it is the idiot duckheads that cause all these problems...and a BIG AMEN TO THAT!!!

For treatment right now... I am on doxy low dose. I am doing VERY well on it and getting better. I actually see some of the "old me" starting to surface. It is nice!

But.. I had to stop my Mepron when I doubled the zithro dose back last November and crashed from too much zithro. I had been doing very very good on that also at the lower dose... till the crash of course.

Since the babesia is coming back cause I stopped too soon... and the Lyme is more stable now... I am to start the Mepron/zith combo again this Monday coming up. This time I won't jump up the dose. I will stay at the level that was working and keep smiling. I learned my lesson... big time.

I think cause I am getting better is the reason I am now able to address these od things like the eye problems. Like I told the eye doc when he asked why I waited so long to get help... I was just soooo sick with sooooo many things I couldn't handle it all. Now that I am feeling better I need to take care of some of the damage done years ago and get the most bang I can back in my life.

I was tested by Igenex back about ... hmmm.. I think about 9 months ago or so... can't really remember. I tested positive again... (I am a lucky one who nearly always is positive on tests, ELISA and WB... lucky meaning I can show the ducks proof positive... not that they listen... but I have the positive.. even CDC positive tests)... for Babesia, Lyme, Bartonella... and I think that was all??? I also sent off to Bowen and had L-forms and babesia show positive. I think I had a Quest test positive for Bartonella too within the past year. I had been 2 years with no treatment at all cause I couldn't find myself a doctor to help me... so the bugs had gotten the upper hand.

Good to hear your eyes improved with ICHT! Wonderful news! Eue sight is dear. I am happy you have yours. Keep us posted on the progress when you can. I LOVE success stories... for sure!

Thanks for asking about me. You are very kind.

K-bear..

May I appologise for taking so long to get to you with the email... I just sent it out. I saw both doctors.. but one while they were in DE instead of the regular office. it was closer for me. Both were very good.

I am sorry you are having eye problems. You are right... no fun! I miss reading... and seeing! I am thankful to have a computer now and the fact I can adjust the letter size is fantastic. I would be soooo miserable if I didn't have it.

But.... it would also be nice to be able to read a book or even a magazine for a change... or to be able to see the labels on food I buy or the prices on the shelf... or be able to fill out a form when needed.. or a check... etc.

Hopefully things will improve for me. Please do get help. Don't wait.

And don't listen to the idiot that told you floaters are normal. I have an opthalomogist from the insurance company I am required to use. He insists Lyme "can't affect your eyes"... no way.. no how.

Butthead...

I don't even bother to argue with him...

Good luck! I want to hear back after your appointment. Folks really are happy with this LLMD eye doc... so I would like your opinion too.

Hey me and my...

So nice of you to share and ask about me. Yes... I do have Encephalitis. But it only hurts when I breathe. OUCH!

You said..

"Besides my glasses for distance and bifocals, I now need to get a pair for mid-range so that I can see the computer."

I am the same way. I am afraid the new lens I just got have me too limited and I will not be able to focus unless it is real close or real far. I have been using at least three different pairs of glasses daily. I have to or I just can't function. I hope you can get to a good eye doc. Let me know if I can help.

I am glad you brought up Plaquenil and the eye situation. Good note to add here for others. I am not on it.. but it is a good reminder for everyone. Thanks!

I will take good care of my baby greens/browns (what do they call the color... hazel? I forget?)... if you take care of your eyes too.

Deal?

Hey hey ELFram..

Hang tight.. break time...

Hey hey ElFram...

Welcome to Lyme Net!

Thanks for sharing too!

You said...

"When I am reading a book, sometimes the black letters change color. Not all of them, maybe just a few initial letters go red or turquoise. But sometimes the change to a variety of pastels at once - yellow and pink and light blue. The background stays white. Just out of curiousity, does this happen to anyone else?"

You are a strange one... hehehe

I have some symptoms listed in my neuro list that are similar but not exact. I see the line of black letters and they get ... ok ... don't laugh...

Jellyfish like. What happens is they appear kinda opaque like... with neon tints spattered about the borders of the letters?

It only lasts a few seconds when it happens.. but I am not sure as I reply here (you got me thinking)... if it is because I look away... or what. I will have to pay more attention next time.

You said you sometimes see black and white things in color. I do the opposite. I see colors.. and I have no big color vision problem except with reds... but I see color as black and white. NO color.

You posted a reference.. and honest? I am not able to read it tonight but I will.... and I thank you... but... you were talking about the cranial nerves section.

My guess is that the cranial nerves do make a difference.. and you are right on with your conclusions.

I see a neuro chiropractor.. and when my color turns to balck and white... he works with the neck and brain areas and suddenly (instantly) I see color again! Weird.. but it works and makes a HUGE difference.

When I get the no color problems I also can get the problem that I don't see in 3 dimensions. I see flat everthing. No depth to scenery. It is as if my brain makes a color landscape scene turn to black and white and like a photograph... not a live scene.

Now you are making me sound like I am from another planet ya know. hehehehe

Good to hear the vision therapy works! I would love to get help with these things.

Thanks for the information. Glad you joined us.

Can we help you find a LLMD? Lettuce no!

David.. dear David... sooo sorry....

I do thank you for the offer of a good docs name. They ARE few and far between. I am set for now with some good ones finally... but I am glad you posted this because others may want to reach you for help. So thanks for offering to share!

It is terrible to have the light sensitivity that makes you so wicked and nauseated. Many folks don't understand that problem... but I sure do. I actually get panic attacks, a big personality change, and nasty when exposed to these lights... as well as shakey and disoriented to say the least. I am sorry you have to deal with this also.

Have you seen the posts on stores and peppermint and yellow and rose tinted glasses? This stuff does help me and several others. I don't know if you have tried anything like this... so I will close this reply in a minute and find the sites for you just in case. Perhaps it will help?

Also.. have you been tested for Babesia? I found once treated for it these symptoms were reduced. Since I didn't get rid of the babesia... they are back.. but perhaps it will improve when I go back on the mepron/zithromax combo? I hope so. I mention this in case it might help you?

I am a Samsung fan and now.. for the past 10 years or so... I purchase this brand over others.. so it is good to know about the bulbs.

I found I had to turn off the electric stuff in my bedroom.. like electric alarm clocks with the LCD lights, the phone machine, the lamps, etc... or they bothered me. I sleep better with them gone. Might that help you in any way?

OK.. let me get that site for you... and again... thanks for the information and kind assistance.

Here are the sites... night night!

http://flash.lymenet.org/ubb/Forum1/HTML/006315.html

I'm sorry you have all these problems/symptoms.... I don't know how you do what you do, or how you keep going.

I think I have a few too. Dry eyes, burry vision during a headache, yesterday I had a headache and my right eye got a little red and it hurt....so I guess I'm a sicker than I thought? And a little scared now too.

Gee, I always thought I had chronic sinus headaches?? Atleast that is what I don't know how many doctors told me.

I found out last night I have NO night vision. I tried it, I don't know how long I have been walking around in the dark like a blind person?? I really don't?

I have to feel my way, I guess I do this all the time and didn't realize it. How can I not know this? I stopped driving at night a long time ago but figure I didn't have the greatest vision....
If I have to drive at night when the light shines in my eyes I get all panicy.

I also hear stuff.. the TV and radio and it's not on, my ears ring all the time, but I thought it was cuz I took all that apirin during my TMJ. Noise drives me nuts!!!!!!!!

Thanks for posting all this information, it helped me to figure some stuff out.

Hi Tincup,

Sorry for late response. Will do Halo

experiment and get back to this post.

I got distracted and stressed out last week

and so didn't think look at the signs and

symptoms you posted, and to get some leads on

possible solution(s).

Halo Experiment:

1) At night look at street lamp w/ both eyes open.

Question for self-answer: Is there a "ring of light" around the lamp--A 'halo' of light?

2) Next cover one eye while its open and

look at the street lamp with the other eye.
Halo?

3)Do same with other eye.
Halo of light?

quote:

---

Originally posted by Tincup:
Hey... looks like we got more responses while I was away. GOOD!
Lifeline...

Diffy Q-R-S-T-U-V-W-X-Y-Z...

DUH... Vitamin A1... no.. vitamin A.

A1 is a steak sauce don't ya know... silly me.

Why didn't I think of that? GOOD idea. I

had taken it a long while back... and

completely forgot till you mentioned it...

THANK YOU!

How did the halo experiments turn out? Interesting!
.....

---

tincup, this sounds so much like me. I can relate to most of what you say about the weird eye stuff. I don't drive at night, (actually don't drive in the day anymore), but the light thing messed me up so bad, that when another car passed with headlight, I get a huge halo around it and it is like I am blinded. also the other stuff too.

The eyes not working together I have had since forever. i had eye surgery as a kid for lazy eyes, when I started taking myself to eye doctor as an adult they told me my eyes take turns looking at things and I can really relate to closing one eye, when symptoms are bad. I also don't read much anymore. That stopped about 18 months ago, I used to read alot. Tv too, I barely watch and can relate to what you are saying about concentrating to hearing and seeing at the same time.

Sometimes I think people think I am a snob, because if you don't come up to me and say something, good chance I won't be sure who you are unless I see you everyday. I have the argyll-robertson pupils, but they do respond to light. Different times they are worse. Earlier in disease, I had 2 different sized pupils and they would change alot and eyes would change colour alot, like be really green one day over another.

I have had a lot of eye symptoms. I may go for 2 weeks like I can't funciton without my glasses and then not need them.

You mention something which seems like you mean MRI-painful. If that's what you meant that would explain my first one, where all my nerves started to burn and felt like my head would explode and they had to stop it., when they did I was shaking and sweating. I didn't know I wasn't the only one who reacts badly to MRI's like sensitive to energies. I don't stand close to the window in a storm cause I can feel the ligtning.

once i was watching a storm and lightening struck across the street, didn't feel right for a couple of days. Considered going to doctors saying I was affected by lightening but thought he'd think me nuts.

I thought I would respond to this, have been researching eye stuff, considering going to specialist again, didn't get any answers last time, except allergies???

You have made my day--not because of anything but the fact that you have confirmed that I am not coco-loco as I have been suffering with most of those symptoms and didn't have a clue that anyone else had so much of the same.

Had almost resigned myself that-ok-this thing will just make me blind--a dog ?

Don't apologize for a lengthy post--you have helped bring to light things that may have haunted many for a long time--

and all those tips you gave to help correct. I, for one, am so grateful for a fascinating and enlightning post.

You have really helped me not feel so alone and have given me courage to look into more help.

I had *accepted* it as part of this long-term-crappy disease and my age. Now I will forge ahead and fight it---would never have known.

Thanks so much for bringing all of this up.. I have been *in the closet* with it for several years-don't have an LLMD ophthomologist--but one who helps as much as he can.

Bless you and keep up that spunky attitude.

I am sad...very sad to hear you are having ongoing problems with your eyes.

I happen to be looking into sunglasses that block ALOT of the harmful rays of the sun that can lead to further damage of the eyes.

Perhaps, they can help you?

Here is the site for information:
http://www.noir-medical.com/index.htm

1-800-521-9746 (toll free)

Quote from a nurse who uses them:
"All NOiR sunglasses are not created equal.
You need the type that blocks the infrared as well as the UV rays and you need them to block 90% (indoors) to 98% (outdoors) of the visible light.

Spectrashields model havea model for those who don't wear Rx specs and one for those who do. Ask for the protective coating to prevent scratching.

I suggest ordering #11 40% Light Amber ,

#01 10% Medium Amber

#07 2% Dark Amber

That way, you will have a range of choices for inside and outside.

The 2% are VERY DARK, only good for bright sunlight."

Hope this helps.

P.S.

Does Dandelion tea help????

I was having the same exact problems and went to a LL-eye doctor also. He also diagnosed me with a pretty bad covergence disorder.

Well, when I started feeling better, before this last relapse, i went for an exam and it was gone!
Well, guess what? IT'S BACK.

This doctor was amazed, saying that non-lyme related convergence disorders don't just come and go. But this was obviously the lyme.

I got special glasses to wear for computer work; but it makes getting through my work day really tough. :-( i use the computer all day. well, at least, when I feel well enough to work all day that is. which isn't often!

I spoke with our lovable Moonbeam yesterday, and she is actually going to the eye doc again today for new problems.

I am sure she could use all the well wishes, prayers, and support from her LymeNet family right now that we can spare...

Melanie

The eye Dr. attritubed all to lyme disease, the floaters, convergence problems, double vision, light sensitivity etc.

Our insurance covered one of the vision educators but not others. I think the one we saw and now wait for is in Lancaster and Wilmington. Wilmington might be closer than the 2 hour drive you mentioned.

Becky's lyme Dr., Dr. A. C. near Longwood Gardens said the eye dr was very knowledgeable and he has been a presenter at lyme conferences, or so I think she said.

The darn symptoms also scare me, I have some of them but refuse to have lyme...NaDa..Don't want to be a + or even a -/+ Must get my babe well first before I can even think of this possibility.

Bologna it isnt normal, I have lived that way since I was a wee kid!!!!

Actually how funny, I have the same thing and was the first person documented with this! EXACTLY the same.

It was discovered by my eye doctor when I was a wee child of 2 yrs old. (lack of depth perception and blurry or double vision causes certian issues...so as you, I compenstate by using ONE eye. You probably noticed when I saw you...I kept an eye on you...who knows where the heck the other eye was off too!!! LOL

Anyway, welcome to my club. (Eye excercises will keep you from totally supressing and loosing the vision in the bad eye....I still have to do those....40 yrs later...).

karen