posted
I have late stage cns lyme disease, and one of my symptoms has been blurred vision. At my last eye apt. the dr. noticed something wrong with my optic nerve. She did a vision field test because she thought that it was glaucoma, the test was normal. Now she said we have to keep a close eye on it and she will see me every 6 months. My question is, could it be the spirocetes attacking my optic nerve? I know that they do go to the eye, but I dont have any info on that. Thanks for any information, my eyes were perfectly healthy before lyme. Kim
------------------ THank your for any replies, they are greatly apprieciated, Kim
Posts: 7 | From Peconic, NY, USA | Registered: Feb 2001
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posted
YES. Lyme can cuase blindness in a variety of ways.
There are topical antibiotics made especially for the eyes. GET THEM ASAP!!! I did have a couple names of them but I am blanking on where I have them written down.
I'll post some stuff on Lyme & Eyes on another thread.
Posts: 2641 | From Aptos, California | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I know of a physician who is blind from Lyme. One of my first symptoms of Lyme was elevated pressure in both eyes. I was monitored carefully for glaucoma, field of vision tests at least yearly. After abx treatment the pressure subsided.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes....It can cause eye damage (some permanent and some can be reversed with fast action). My eye doc could see inflamation and knew it to be Lyme. He fought the Insurance company to get me on antibiotics as soon as possible. I had field of vision tests both before and after antibiotics. The difference IS AMAZING!!! And it showed so on the test results. That made the case for getting additional treatments and eye glasses paid for by the ones responsible. The vision I lost permanently will not return.
May I suggest getting help for this. If you e-mail me I will give you the name of my eye doc in FL who is the greatest. He can consult with your eye doc if you would like. Many eye docs miss this for some reason ??? DUH... And regular docs miss it all of the time in my case. Good luck and take care of you.
posted
Yesterday my opthamologist told me the vitreous (layer?) was pulling away in my eye, bumping nerves which causes the light flashes. Says this is why I recently developed very large black squiggle in my field of vision. Says this is caused by age. This process can cause retina to detach and make me a candidate for laser surgery. He perked up when he said that. He does eye surgery. Told me Lyme disease does not affect eyes!!!
A month ago he told me the light flashes were caused by blood vessels. Nothing wrong with my retina except it was "thinning."
Different explanation every time I go. I didn't try to educate him. Seems like the less they know, the more dogmatic they are.
These symptoms started back in the summer when I was taken off antibiotics for several months. They have continued to progress even though I have now had more than 3 months of rocephin. Getting worried.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hi monica, how long were you treated for lyme and did the elevated pressure present at the beginning when you first had lyme or later on? Thanks, Kim
quote:Originally posted by Monica: I know of a physician who is blind from Lyme. One of my first symptoms of Lyme was elevated pressure in both eyes. I was monitored carefully for glaucoma, field of vision tests at least yearly. After abx treatment the pressure subsided.
------------------ THank your for any replies, they are greatly apprieciated, Kim
Posts: 7 | From Peconic, NY, USA | Registered: Feb 2001
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posted
Hi Lou, my eye Dr. didnt think what she was seeing with my optic nerve was due to lyme either. She seemed to think that it waS glaucoma. I was also off all antibiotics for 3 months and the few things that had improved came back in full force. And all of a sudden she see's something with my optic nerve. It worries me because I know that lyme spirocetes can attack the optic nerve. Thats why I wanted to do some research about it and then I figured that I could present it to her. My eye Dr. did say that lyme can affect the eyes, but not in this waY usually. She did ask me if my Dr. said that he didnt think that I had MS. And I told her no, he said I have lyme. It sure is scary, because I dont think they really know. Thanks, Kim Told me Lyme disease does not affect eyes!!!
A month ago he told me the light flashes were caused by blood vessels. Nothing wrong with my retina except it was "thinning."
Different explanation every time I go. I didn't try to educate him. Seems like the less they know, the more dogmatic they are.
These symptoms started back in the summer when I was taken off antibiotics for several months. They have continued to progress even though I have now had more than 3 months of rocephin. Getting worried.[/B][/QUOTE]
------------------ THank your for any replies, they are greatly apprieciated, Kim
Posts: 7 | From Peconic, NY, USA | Registered: Feb 2001
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Posts: 162 | From Lompoc, California, USA | Registered: Oct 2000
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LymeArtist
Unregistered
posted
When it comes to opthomologists, they can be VERY dogmatic in their opinions. It took me going to see 11 opthomolgists till one actually believed some of the bizarre symptoms that I've been having with my eyes. One spent half my visit arguing that I didn't have lyme at all since he didn't see anything physically wrong with my eyes. I told him I had a positive western blot to which he replied, "Oh that only means you've been EXPOSED to lyme disease." I wanted to expose him to my steel-tipped boot. argh. A neuro-opthomologist bristled when I said my ocular problems were from lyme. He said it was so rare (not true) for lyme to affect the eyes that I must have a virus and that it would go away on its own and I didn't need to see him again. A lot of them are JERKS and very opinionated. I did find a retinal specialist at the Wilmer Eye Institute who was very open minded about lyme and had heard of these symptoms but from other diseases. She was great. There is also a neuro-opthamologist who specializes in lyme disease in Lancaster, PA. E-mail me at [email protected] if you want his number. Good luck, Rob
posted
What an interesting comment. For myself, I've had elevated pressure in both eyes, enough to be watched for it. That was a few years ago before I ever even knew any of this LD stuff. I got the impression that your average 36-37 yr old doesn't normally get pressure problems like that since the eye doc was surprised.
Sal
Posts: 323 | From Michigan, USA | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have been myopic almost all of my life so I had regular check-ups with my opthamologist. Well before I knew I had Lyme my pressure was high. Over 20 in each eye. At its worst it was 36 in each eye. My doctor did not comment either way on whether or not he thought the elevated pressure was caused by the Lyme -- although after the fact he knows I have been on abx. A year ago he performed vision corrective laser surgery on my eyes and I can see better than I have ever seen in my life. However, I use store bought reading glasses for close up work.
I still have floaters and flashes, but my retina is fine and my pressure is below 20.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Hi Kim, Sorry to hear about your difficulties. I am not diagnosed at this point but had a EM in 91 and have never received any treatment was unaware of the symptoms until last spring and have been fighting to get help ever since. Well back to the eye problem. In 95 I started having graying vision even in the daytime. Looked like dusk in the afternoon. Went to MD he said was sinus inf. what a joke, put me on anbx for 1wk. was no better had a terrrible pain in that eye then and went to the optomatrist he told me it was a problem behind the eye and sent me asap to a opthmologist who told me it was optic neuritis(inflammation of the optic nerve) and that it could occur again anytime anywhere in the body. Well he had me coming back to repeat visual feilds every so often also had blurring vision. My rt eye lost some of the peripheral vision. Also they said alot of people who have optic neuritis develop or have MS. 2 yrs later I started having severe motion intolerence (watching out the window of a car would cause extreme dizziness and nausea) I had to give up driving also was very lite-sensative. I cannot even ride as a passenger still and look out the window I have to look down at my lap or purse etc. I have been to many neurologists all kinds of tests had lyme tests finally this last spring and fall when I became aware that my symptoms could be lyme. tests were neg, only 41 band poss. on WB. I have recently went to my 3rd neurologist after no luck with any other doc's, I went from possible ms in 97 to probable in Jan 01. He said it was a clinical diagnosis MS. I mentioned lyme possibility and he said that was provav\ble by tests. I told him I understood LYME WAS A CLINICAL DIAGNOSIS ALSO well he said no way. So I still am working to get help if it is possible but no luck so far. So many things are standing in my way to get help. take care, trish
Posts: 187 | Registered: Oct 2000
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posted
Thrish, thanks for your reply. I'm sorry you are having such a hard time. Did you have a MRI or a spinal tap done? I did and both revieled Lyme. Until then my western blots were neg. also. I thought I had MS. I'm not sure, but I think band 41 is specific for lyme. Have you gone to a LLMD? A LLMD is aware of clinical diagnosis and would look at your background and history. Take care, Kim
quote:Originally posted by yahoo trish: Hi Kim, Sorry to hear about your difficulties. I am not diagnosed at this point but had a EM in 91 and have never received any treatment was unaware of the symptoms until last spring and have been fighting to get help ever since. Well back to the eye problem. In 95 I started having graying vision even in the daytime. Looked like dusk in the afternoon. Went to MD he said was sinus inf. what a joke, put me on anbx for 1wk. was no better had a terrrible pain in that eye then and went to the optomatrist he told me it was a problem behind the eye and sent me asap to a opthmologist who told me it was optic neuritis(inflammation of the optic nerve) and that it could occur again anytime anywhere in the body. Well he had me coming back to repeat visual feilds every so often also had blurring vision. My rt eye lost some of the peripheral vision. Also they said alot of people who have optic neuritis develop or have MS. 2 yrs later I started having severe motion intolerence (watching out the window of a car would cause extreme dizziness and nausea) I had to give up driving also was very lite-sensative. I cannot even ride as a passenger still and look out the window I have to look down at my lap or purse etc. I have been to many neurologists all kinds of tests had lyme tests finally this last spring and fall when I became aware that my symptoms could be lyme. tests were neg, only 41 band poss. on WB. I have recently went to my 3rd neurologist after no luck with any other doc's, I went from possible ms in 97 to probable in Jan 01. He said it was a clinical diagnosis MS. I mentioned lyme possibility and he said that was provav\ble by tests. I told him I understood LYME WAS A CLINICAL DIAGNOSIS ALSO well he said no way. So I still am working to get help if it is possible but no luck so far. So many things are standing in my way to get help. take care, trish
------------------ THank your for any replies, they are greatly apprieciated, Kim
Posts: 7 | From Peconic, NY, USA | Registered: Feb 2001
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posted
[SNIP Diagnosis: The diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs and a known exposure. Serologic testing may, however, provide valuable supportive diagnostic information in patients with endemic exposure and objective clinical findings that suggest later stage disseminated Lyme disease. SNIP
posted
Art,Thank you for the links, I printed some and I will bring them with me to the Dr. Take care, Kim
Posts: 7 | From Peconic, NY, USA | Registered: Feb 2001
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Cathy T
Unregistered
posted
Hi Kim......You've gotten alot of good replies here. I'm no expert, but if your doc saw something with your optic nerve and just wants to sit on it for 6 months.....well, I think its time for another doc, post haste.
Lyme seems to have an attraction to the cranial nerves. That's why people with Lyme get so many facial, hearing, visual problems, Bell's palsey, etc. Please, try to find an opthamologist who will pay attention to you. Keep us posted.
P.S. The comment Lou made about the less the docs know, the more dogmatic they are.....is so true! I think this is true of most people, whatever profession they are in.
[This message has been edited by Cathy T (edited 16 February 2001).]
posted
Im just wondering if anyone has eye problems from lyme other then blurriness. I always hear about blurriness, but thats not what i experience. Ever since i got sick one of the first things i had problems with were my eyes which i got examined and looked fine. the sensation i get is that my right eye is not working properly with the left one. it feels almost like the muscle in my left eye is weak and not coordinating with the othere eye. the most accurate way i can explain is that its like the feeling u get when u put on a eyeglass lens that isnt right for u. Its not the blurriness from it but the way the nerve and muscle feel from not having the right lens. I did have an evoked potentials test which said that there were minor assymitries between the tracking of the right eye and the left, but that it was within normal limits still. just wondering if anyones eye probs sound like mine. Thanx
Posts: | From Washington, DC | Registered: Sep 2016
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posted
Lyme can affect the eyes (my left eye wandered to the left, although I didn't know it until I went to an LLMD who took a photo and showed me -- said it was sixth cranial nerve palsy, I think).
Babesiosis also can affect the eye muscles. The first time I went on Mepron I suddenly had less myopia and could read numbers on a bicycle chain combination lock that for the previous 3-4 years I needed reading glasses to see.
You need to see a neuro-ophtalmologist who understands tickborne diseases. I know the name of one in Lancaster, PA. email me if you want it.
quote:Originally posted by kimsak: Thrish, thanks for your reply. I'm sorry you are having such a hard time. Did you have a MRI or a spinal tap done? I did and both revieled Lyme. Until then my western blots were neg. also. I thought I had MS. I'm not sure, but I think band 41 is specific for lyme. Have you gone to a LLMD? A LLMD is aware of clinical diagnosis and would look at your background and history. Take care, Kim
Dear Kim, I have only had westernblot done using blood. No spinal tap. I had a MRI but not for lyme has been over 3 yrs since that. I thought I found a llmd in Nov. but he was not any help. I have been given a couple names of dr that may help but am having trouble getting a referral at this point. I was left with only the option to return to a neurologist who told me it was probable MS now. I am very distressed at this point. I do really appreciate your replies. I hope you get the help you need. Prayers for you++,trish Posts: 187 | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
up
Posts: 20353 | From The Moon | Registered: Jun 2004
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quote:Originally posted by Tincup: Yes....It can cause eye damage (some permanent and some can be reversed with fast action). My eye doc could see inflamation and knew it to be Lyme. He fought the Insurance company to get me on antibiotics as soon as possible. I had field of vision tests both before and after antibiotics. The difference IS AMAZING!!! And it showed so on the test results. That made the case for getting additional treatments and eye glasses paid for by the ones responsible. The vision I lost permanently will not return.
May I suggest getting help for this. If you e-mail me I will give you the name of my eye doc in FL who is the greatest. He can consult with your eye doc if you would like. Many eye docs miss this for some reason ??? DUH... And regular docs miss it all of the time in my case. Good luck and take care of you.
Posts: 80 | From atlanta, georgia | Registered: Oct 2000
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Up, to SAVE.
Posts: 4563 | From TX | Registered: Sep 2002
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Up.
Posts: 6639 | From Michigan | Registered: Jun 2001
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