I have eye problems also and was told by one doc that I had strange opacities on my cornea, also not curable and only could be helped by cornea transplants. BS, my eyes were totally fine until lyme. That doc even made up the name of a disease to give me, went to his library and figured it out and came back and told me.

I would not get too depressed about this because I think most opthomolgists do not know squat about lyme and the eyes.

There's so much they don't know about Lyme.

In my book, there's always hope.
Don't expect them to improve, but on the other hand, don't give up on the possibility of improvement either.
You know, we've gotta believe in miracles!!

Don't have links to the eye info you need, but maybe someone will come along soon who knows where to find it.

but when I was still looking for answers before finally being dx with lyme.....

seeing eye specialist was part of the package.

I saw several. What I noticed is that they all had different things to say about my eyes.

One would say I have this or that. The the other one would say I didn't have this or that.

I was told I needed to see eye specialist because it was thought I had myasthenia gravis.

Also my aunt who is 90 was told 30 years ago she had some sort of dystrophy, fuch's I think, and would be blind by age 70. She now reads without glasses at 90!!

Had a friend who gave me greens soup recipe, had vision improvement after one year of eating this soup everyday,.

Do a search and you will find it if interested.

Sorry you got such bad news, hope you get some answers from others who have seen improvements.

I'm sure you are scared witless with such a prognosis...but as others have said...he could be very wrong. Opthamologists are as much in the dark about lyme as the ducks are.

Maybe Kim could find you a lyme literate opthamoogist for you in your area. Go to www.lymediseaseassociation.org or is it .com? Email them for a referral. You will feel better if you see a knowledgeable
eye doctor who can give you a second opinion. It would be worth it even if you have to travel!

Talking to people with similar conditions, their sight came back.

Have you talked to your LD? He could offer a second opinion.

Lyme has played havoc on my eyes a few times over the years. Each time the sight came back to normal.

Currently there is an infection around my optic nerve causing blurred vision also paralysis of the eye muscles - no eye movement have to move my head to see. By the end of the day, there is soreness in the eyes.

The lyme went nuro this time around, it could be the cause of the eye movement. Based on my past history, both lyme and eye Dr said sight should improve after ABX along with the other nuro problems. If the problem is nuro based, the repairs can take months or even years, nobody knows.

Time only knows, God hope it does.

Keep your chin up.

I was told 18 months ago that my eyes wouldn't get any better that I just plain needed STRONG glasses because I was getting older. My vision varies from day to day.

Last month I was off abx for three weeks. My vision improved so much I could read in bright light without glasses!!! The blurriness came back with re-starting the abx. I KNOW that when I'm finished being treated my vision will improve.

So don't believe the doc. Trust your instints.

For example, two years ago I found out my then-LLMD, who I worshipped, had been flat out lying to me about my insurance coverage. When I called him on it, he yelled across his office, "You'll never get better! No other doctor will help you!" It's true that I'm still sick, but I'm a million times better than I was, or would have been if I'd just continued to believe everything he said.

Also, what someone said about supplements sounds wise.

I remember several years ago I was told by a lady who owned a health store...
that this man that was loosing his eyesight...

used this product... and got better. Product website below. Man did not have lyme, but does not matter.

Was told by the Dr he was to be blind in several months... and this young man, age 35, went on the hunt in the alternative health stores, to see if he could keep his eyesight.

He did. Not overnight though, took about one year.

Using this product played a role in getting his eyes well, as well as SPIRULINA.
I think? I read that LYME does something to our vitamin A, and this could be why somes eyes get worse. Maybe you need some vitamin A, such as cod liver oil?

Here is a site that sells this product. I think he started off with 6 caps a day... which would be quite expensive.

ALSO, not sure if this product would be good to use while on the antibiotics... because it is quite a potent antioxadent... and may render the antibiotics less effective... but I could be wrong, maybe it is fine on antibiotics.

Also, a friend of the families, a man that is 70, takes this product, but only 2 a day, and is now seeing SO!!!!! much better.
he has really bad eyes, getting worse, now they are fine. He does wear glasses, but does well.

Here is a site where you can take a look at the product.
http://www.cdnf.com/item1493.htm

i'm so sorry to hear this. but there is a chance that it isn't permanent. my cousin lost vision in one of his eyes after a dr botched an operation for a detached retina.

he is a fine artist and also deals in rare coins and documents, so this was almost a death sentence to him. for yrs, he wore a patch over one eye.

then he got a cateract in one eye. the eye dr ( this time at a good hospital) told him he needed an operation, or he would be totally blind. added there was not hope he would gain the vision he lost fro mthe botched operation.

he explained the problem as something being folded over and unable to be ironed out. had the operation for the cateracts. and guess what?! his vision was restored. they don't know why. he describes it as being reborn.

i can find out the name of the dr he went to if you email me. also, there is a dr S (?) in lancaster , co. who is a highly recccomended lyme literate optomologist.

also, i went to the "best" when i was having serious problems with my eyes as a result of being at death's door with lyme/babesia. i will retype some exerps (sp?) from "best of philly" UPENN dr grant t. liu. a.k.a. "leaping liu liu". silly silly boy who thinks severe pain and insomnia are hysterical!

the best isn't necessarily even close. especially if money figures in the picture.

my eye problems included severe pain behind my left eye, very blurry vision, dark shadows, floaters, tiny flashing lights, double vision, eyes going out of alignment[that his buddy upenn punie petie dr peter l. schwartz noted in my records as "slight strabismus" - guess they should have been more clear with each other at what they decided to put in my records. ], trouble reading because the letters wouldn't stay still, print seemed lighter in some spots, darker than others... and so many neuro symptoms, even the town idiot would be able to see i had serious neuro and cardiac problems.

dear sheryl [sherly menacker -langhorne eye assoc. - did my exam with an ernie finger puppet. more intent on humiliating me than whatching what was going on with my eyes],

thanks very much for sending [Caryn]for neuro-opt consultation regarding double vision.

the patient is currently 30 yrs old [nov '98 - my birthday is oct '60] and states she was in a motor vehicle accident in '82 [had double vision for almost 4 mos following tht accident which i told them had resolved . had other things since then i never got an answer for - lots of bad eye drs out there?, but made it clear, that the current severe symptoms i now had i did not have all those yrs]

"has occasional mild headache" i said SEVERE CONSTANT HEADACHE! it was so obvious i had lyme encephalitis and the having to turn my whole body around to back out of parking spaces because i could not turn my head around would give them a clue about the lyme meningitis.

"i recieved copies of your notes and in fact had monocular double vision during your exam" ernie from sesame street is such a brilliant plastic puppet, isn't he? even the "best" go by his dx. so leaping liu liu didn't have to do a real exam. more time for him to make fun of me with his theatrics. he put in the newspapre a patient should never have to wait more than 30 min. for an appt, so there were time contraints to his fun. he also stated he did not much like malpractice suits when quoted in teh "best of philly" article. and looked so "serious" in the photo they took of him.

"at distance and near, i did not see any ocular misalignment with alternate cover techniques. she states that when i covered one eye, the vision was "not clearly one" even with the pin hole, she sstill experienced this." [what i told him was that i no longer had obvious double vision with one eye covered, but that i still could not focus directly on the dot. it seemed to be blurry and moved. i did tell him that for quite a while, i noticed that i would cover one eye in an attempt to be able to read. he thought this was funny. silly silly liu liu. ]

"on neurological exam, she is alert and attentive. facial strength and sensation were normal. she has normal strength, sensation, finger-to-nose testing, gait and reflexes."

i most definately was not alert and attentive. no i didn't have normal strength and sensation. he never did finger to nose testing or any neuro exam. he was having too much fun humiliating me. pretending to see "pebbles on the lenses", and theatrically leaping to the empty exam rm nest door where they had closed the vinly curtain so he could "compare lenses "-as he stated he ws not an expert in lenses. and leaping back theatrically stating "oops wrong call".

not only did he refuse treatment to a seriously ill patient , but the lies he put in my records made it very hard to get med care after i left UPENN's care and therefore also unable to sue him within 2 yrs of finnally getting dx because of the fear of other drs to give me treatment and order tests i needed to show damage, and also because UPENN has this rep as such great drs that many other drs didn't beleive me. the psychological abuse caused me to become suicidal. only still here because of timing. and the psych damage he did....

now i have unearhthed photos of me with text book rash we unwittingly took as well as pos pcr, lyme spciefic bands on w.b......

even if you did not get the abuse or obvious predjudice i got, does not mean you necessarily got competant med care. they can pretend very well that they are caring and doing their best.

also, even the truelly good drs don't know everything , especially about the things caused by lyme/coinfections. they are sincere, but don't really know for sure.

and , in my cousins' case, he went to an extremely competant dr the second time who gave him no hope about the previos damage being fixed, and it was fixed!

i have heard about the greens for nutrition that will affect the eyes. my father in law has been dealing with macular degeneration for 10+ yrs and that was reccomended to him by a will's eye hospital dr. are bodies have been thru a lot and we need to build them up again.

i don't know exactly what your eye problems are, but i would not be so quick to accept that this is perm damage. expecially with how much they really don't know.

take care

However, I had a vitreous separation which is permanent. This happened when I went off meds for a couple months (for yet another test) so I think it was Lyme damage, although the eye doctors (even the one in Lancaster) said it could have been another cause entirely. Not believing this myself. Think it was Lyme.

But it means I am now in much greater risk of retina detachment. Yikes.

I saw your post and have been reading your other posts about being on Ketek. I just started it yesterday.

Ketek can mess up your vision. Read the insert. My LLMD made a point of telling me that the vision is the one side effect that I might notice.

If your eye doc doesn't know about that, it could really effect what he thinks of your current vision.

Sorry about your news, but like the others I agree with talking to your LLMD.

I've seen 2 neuro-opts, Emory and Mayo, and never have found the cause of my vision problems. Had 6th nerve palsy, ptosis and something else I can't remember.

Course now I know it's Lyme related, (Cranial nerve damage). Tincup has posted in medical about cranial nerve damage.

What exactly is your vision problems??

Mine was double vision and then when that cleared slightly have had very blurry vision until treatment for Lyme.

Now my vision is clearer on some days than others. I've noticed lack of sleep makes it worse.

In the interim had a huge eyeglass presciption change. My regular opt asked if I'd been in an accident because of my bad vision.

Don't give up GD. My vision has improved some and I've only been on orals for a month and a half.