Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
I am experiencing dramatic changes in my vision that none of my doctors, even my lyme doctor, seem to understand.
I'm wondering if any of you have gone through something like this.
It's hard information to find, there isn't much about it in Pam Weintraub's book. All I have to go on is what Rachel Wells wrote about her lyme (http://www.ya-ya.com/lyme) She said she was so sensitive to light she couldn't go outside without a black blindfold.
What wasn't clear, was if that is caused by the Lyme or the excessive amount of time on antibiotics.
I did notice a change in my vision before I started taking antibiotics, but it was so minor that it was impossible to describe. One thing was that I hard a hard time just keeping my eyes in focus.
Right when I started the doxycycline I started noticing that something was different. I seemed to be seeing very faint trails from objects and the white pages of books seemed to be moving or glow in an almost imperceptible way, but I could still read.
I got my eyes fully examined and the doctor said I was fine except for some photophobia, (sensitivity to light) that I figured was a symptom of the antibiotics.
It got worse and worse though and I started noticing halos around digital clocks.
If I played a video game or watched a movie where there was an illusion of motion, when it was over, my vision would be really messed up. Everything would undulate like I was under water and if I focused on an object it appeared to be growing in size or coming closer, or getting smaller.
When I watched tv I could only see the shots where the camera was still. If the camera was moving my eyes couldn't follow and everything was a blur.
Now I can't even watch tv or go on the computer at all half the time the light hurts my eyes so much. (I'm doing this through sunglasses)
I can't go outside without sunglasses either, even on the grayest days.
In cars now I get that same sense of motion with the undulation and things appearing to be getting closer or farther away. It doesn't seem like that can be from light sensitivity, it seems like it's something to do with nerves.
Anyway, thank you for reading all this. I'm really scared and so far my doctor hasn't been very helpful.
So I'd be very interested to know if anyone else experienced something like this, if it was before or after antibiotic treatment, and if it got worse the longer you stayed on antibiotics and if it resolved when you stopped.
Thanks, and good luck with your own lyme.
I'm wondering if any of you have gone through something like this.
It's hard information to find, there isn't much about it in Pam Weintraub's book. All I have to go on is what Rachel Wells wrote about her lyme (http://www.ya-ya.com/lyme) She said she was so sensitive to light she couldn't go outside without a black blindfold.
What wasn't clear, was if that is caused by the Lyme or the excessive amount of time on antibiotics.
I did notice a change in my vision before I started taking antibiotics, but it was so minor that it was impossible to describe. One thing was that I hard a hard time just keeping my eyes in focus.
Right when I started the doxycycline I started noticing that something was different. I seemed to be seeing very faint trails from objects and the white pages of books seemed to be moving or glow in an almost imperceptible way, but I could still read.
I got my eyes fully examined and the doctor said I was fine except for some photophobia, (sensitivity to light) that I figured was a symptom of the antibiotics.
It got worse and worse though and I started noticing halos around digital clocks.
If I played a video game or watched a movie where there was an illusion of motion, when it was over, my vision would be really messed up. Everything would undulate like I was under water and if I focused on an object it appeared to be growing in size or coming closer, or getting smaller.
When I watched tv I could only see the shots where the camera was still. If the camera was moving my eyes couldn't follow and everything was a blur.
Now I can't even watch tv or go on the computer at all half the time the light hurts my eyes so much. (I'm doing this through sunglasses)
I can't go outside without sunglasses either, even on the grayest days.
In cars now I get that same sense of motion with the undulation and things appearing to be getting closer or farther away. It doesn't seem like that can be from light sensitivity, it seems like it's something to do with nerves.
Anyway, thank you for reading all this. I'm really scared and so far my doctor hasn't been very helpful.
So I'd be very interested to know if anyone else experienced something like this, if it was before or after antibiotic treatment, and if it got worse the longer you stayed on antibiotics and if it resolved when you stopped.
Thanks, and good luck with your own lyme.
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I've had some eye symptoms, not as strong as your's, but with some similarities.
I've noticed that my vision has gotten crappier, and it seemed to happen almost overnight. I've seen 2 opthomologists, both saying "You're at that age, where this is expected. It's only going to go downhill from here". Thanks guys :(
I'm very sensitive to light (and sound), but not to the extent you are. I can't go out without sunglasses, or I'll have to pretty much just close my eyes. Regardless of whether it's a sunny day or not, I'm in sunglasses. But I don't need them for reading or teh computer; although I do use readers over my contact lenses now.
I've had a couple more dramatic events - once when the tv "tiled" on me, meaning the picture was broken up into 3-4 inch squares, and a couple of those squares were black. Lasted for about 5 minutes; optho said it was a migraine symptom. I doubt it, but it hasn't happened other than that one time.
I've also had eye pain, like 100 times worse than when you get an eyelash in your eye. That lasted a couple days (never did call the dr, stupid on my part, i know).
My eyebrow twitches sometimes, not sure if that's relevant at all, but thougth I'd mention it. I'm thinking that the Lyme is causing muscle weirdness in my face / eye area, and that's what's causing the vision changes.
I hope I've helped even just a little. But I think you're doing the right thing, keep on your doctors.
Did they say they could do anything about the photosensitivity for you?
Jenn
Sorry to hear you are going through this.
I have been on Antibiotics since February of this year.
I have definitely noticed that my eyesight has been affected and I am also photophobic too.
I find that if I go outside then the light seems to burn my eyes and my skin is very sensitive as well.
This week is has been particularly bad, and I posted a discussion asking the very same situation as you.
I have decided that I am no longer going to take the antibiotics and have decided to try an alternative treatment.
Firstly I am eating lots of Garlic raw ( this is very hard!!) as I understand that Lyme hates garlic and it is good at busting the cyst form of the disease. This is definitely helping to get rid of my lyme. ( It may not cure it though, too early to tell)
Secondly I have been making and eating my own Organic wholemeal bread which is for energy and wholegrains.
Thirdly I have been taking Green Algae is water from the Health food shop, this is good at flushing out the toxins and feeding the body with nutrients.
Fourthly today I am going to try Watermelon, which someone on
youtube claims cured their lymes disease.
Fifth I am making lots of Chichen soup by boiling up the leftovers from roast dinners, to this I am adding leeks, onions, stock, and
rock salt and vegetables.
I have been off the antibiotics for a few days now and I am feeling OK, I don't know if this is a cure, but it sure the hell is better than going blind!!
Hugs and good luck to you.
Dave X
on ... Duh!!!
diseased eyes. ( I sound like a Country bumpkin!!)
I have found this also good for the eyes when they hurt.
Just buy in Supermarket and steam for a few minutes, eat with melted butter on.
Dave X
I am so sorry and hope that you can get answers and feel better soon!
Below is one of many studies on eye symptoms caused by Lyme
:
http://www.ncbi.nlm.nih.gov/pubmed/10711899
I'm also a little surprised that your doc didn't know about this, it's even listed in the infamous Lyme Symptom List (the one that's 1500 pages long, lol). Rest assured, you are not alone. Miserable, I am sure, but not alone. I can assure you, this WILL get better (was one of my first symptoms to leave). I hadn't even thought about it/recalled it until reading your post!
Sometimes it's out of the corner of my eye but sometimes it looks like it's right in front of me but if I try and "look at it" it isn't there.
I'm glad to hear you aren't experiencing it anymore.
I'm wondering though, does that mean for you it started before antibiotics and it got better after antibiotics? I still don't know if this is a symptom of lyme or a side effect of abx. My doctor seems to think it could be either and isn't being very helpful.
I have had light sensitivity a few years ago, when I was not on antibiotics, but it would just come for a day and then not bother me again for months. And it was a little different than this, it was just halos, like around traffic lights at twilight, but not digital clocks.
Thanks so much for your reply!
Dave- Thanks for the reply! Sorry I missed your discussion post I only went back about five pages looking to see if this was covered.
I'm curious, now that you are off the antibiotics, how long it will take for your eyes to go back to "normal" I might message you next week and ask. Thanks :)
Jenn-Thanks for sharing all your eye problems too. Neither my lyme doctor or the opthomologist I saw said they could "do anything" about the photosensitivity. The opthomologist said it happens sometimes and will go away in a few months. I don't know.
AllisonC, your visual symptoms sound awful! I feel for you and really hope they disappear soon!
Hope you are OK,
I wanted to contact you to let you know how I am feeling.
Its been a week now since I went off the Doxycycline.
I have been eating lots of raw Garlic and drinking lots of water.
I have also been eating lots of fruit for Vitamin C and vegetables
but mainly apples,oranges (no Bananas)
which are mainly raw. Its been tough!!
My eyes have stopped burning, photophobia is much less
my Headaches are much less too.
I have discovered too that if I stick to just fruit and smoothies and Garlic and then last thing at night drink 2 pints of water with
half a lemon juice in each and stir in one teaspoon of rock salt then this attacks my lyme big time and makes me feel much better!
I can't believe that the salt and lemon are so powerful, you should
definitely try this. Its my belief that the Garlic busts the Cyst form of
the lyme and then after 3-4 days of this, the salt and lemon bust down the cell wall of the lyme.
I wish you well and hope that things improve for you too
There are two sites I want you to check out one is on Myspace and is called Arnoldsway.com which is where I got the fruit idea from and there is a I cured lyme disease is 72 hours on DS which is where the Salt and Vitamin C lemon idea is from.
Take Care
Dave X