posted
Hi there! For those of you experiencing vision problems, how did those vision problems start?
And how quickly did they progress?
Although I have been having trouble with spots/strings/flashes etc for quite a while, I'd never had an trouble seeing things (just trouble seeing extra things!)
But, about three weeks ago, I started getting headaches behind my eyes, and tired eyes.
When I read things (especially on the computer), after a while, it would be hard to seperate the individual words, and reading strings of numbers was even more difficult.
It wasn't so much blurry vision as difficulty focusing my eyes.
I also am really sensitive to glare. If there is any glare around me when I'm trying to look at something, I'm unable to focus on whatever I'm looking at.
I went to the optometrist, and all she could find was that I had very slight astigmatism (+.25 and -.25).
Apparently, many people have this, and never get symptoms. Well, since then, my vision has detoriorated even more, in ways that do not relate to astigmatism.
I get occasional blurry spots, and (this is going to sound weird, but...) I can see my nose all the time.
It feels almost the same as when you go cross-eye, but not as extreme, and it just happens on its own.
I can see sort of a shadow of my nose in the centre of my vision, and if I look to the side or down, it gets worse and I get double vision.
If I look up, I just get a blind spots in a line along the centre of my vision (where my nose used to be).
I also find I have a hard time looking up- even just looking straight in front of me (like when I drive) makes my eyes tired really quickly.
It's not double vision (I only see one of everything), but there is definitely something weird going on...
And it doesn't helop that my eyes are super puffy and twitchy either..
Anyway, the speed at which this is progressing is making me nervous. All this has happened in 3-4 weeks, but the last 2 weeks have had the greatest change.
Has anyone had similar symptoms? Did they happen this quickly as well?
I'm also curious about the astigmatism thing, since I had more-than-perfect vision prior to this.
Was anyone else diagnosed with astigmatism when they got Lyme?
posted
Hi I want to bump this up for you so others can see it.
But I did have worsening vision with Lyme too. I used to only need glasses to read, now need them all the time. Everytime I go to the eye dr's it is worse. I have troubles focusing too. Can't see well at night. Have troubles with depth perception also. I think I have the astigmatism too?
My son who is 10 developed strange vision problems a few years ago. He has esotrophia (sp?). Most kids get that while very young. So he got it at an older age. He was having double vision too. Also they said his one eye would shut off to accommodate that. Very strange!
They wanted us to do eye therapy on him. But we are hoping it goes away with treatment. Not sure though?
We had MRI's and CT Scans to make sure no brain tumor. Cause it's not normal to develop that kind of eye problem at his age. So it must be from the Lyme.
I heard it can get into the nerve that controls your eye. Hope others can help too!
Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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bettyg
Unregistered
posted
welcome nicole,
sorry, i couldn't read any of your post since it was one long paragraph. severe neuro lyme patients like me/majority here needs short paragraphs and double spacing between each paragraph ok.
please use my guidelines below on how to break this up so we can comprehend, read, and then be able to assist you thanks hugs
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
posted
Dear Nicole, I too experience similar symptoms. I began giggling when I read about the constant shadow of your nose, because this is a more recent development for me as well. It drives you crazy! I also have astigmatism, but have been near-sighted since my teens.
The double vision and difficulty focusing are caused by my overactive Thyroid. However, some of the other symptoms are just plain unexplainable. I see little glittery sparkling things sometimes. Do you see those? They are usually blue, but sometimes they are gold or white. I have asked others before about this, and they say that it does not sound like floaters.
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
My eyes have always been bad.
I was born with a lazy eye, and no one ever tried to fix it till I was in kindergarten, and by then it was too late, and because of being laughed at, I wouldn't wear the patch over my eye.
Anyway, my eyes just kept going downhill until my vision kind of leveled off in my 30s.
Last summer, which was when everything else started going haywire, I started getting a lot more floaters, as well as just genneral vision problems.
I just can't focus sometimes--some days it's near, some days far, some days both.
I get sparkly things too, and although I haven't had this for a long time, I used to get what they called optical migraines, where I'd have a flashing light and a blind spot, but no headache.
And yes, I was tested for MS, retinal detachment and macular degeneration, all fine.
I have been to several optometrists and opthomalogists, and a neurologist, and none of them can find anything.
It seems my vision is normal when i go to the eye doctor.
I do have astigmatism, but I always have.
I also have NO depth perception.
That has always been bad for me, but the past few times I have been to the eye doctor, they do this test on me ("Here are 6 objects; one stands out more than the others. Which one?"), and I can NEVER see one standing out more than the others.
Makes backing the van into the garage interesting to say the least.
So yeah, you're not alone. I just wish there was some magic cure, because I fear going blind with this.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Another one here with Lyme related vision issues.
Started in 2005 with flashing lights in my side vision which now come and go but can become chronic - like all day long and worse wih any sort of exertion.
I also have chiari malformation so not sure which thing causes which thing...
I have 6th nerve palsy which is a "new" finding that came on after my last steriod treatment (post-op inflammation)and could be a lyme issue.
Most eye symptoms you mentioned I get as well.
Computer screens throw my eyes into a tizzy and I try to keep the flicker rate above 75 and use an anti-glare. I can get really bad flashing lights just from looking at a moniter for more then 30 minutes...
Like I said, I don't always know what is coming from the chiari malformation and what is from the lyme as they both have similar presentations.
But I do know that the visual symptoms came on after an undertreated IV treatment in 2005.
Posts: 376 | From New Jersey | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You can search eye here and find lots of clues. Since we are all not the same I am assuming it is a neuro symptom.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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So I have edited my original post. Sorry about that BettyG!
Jin- I do see sparkles. I used to just see occasional flashes, but now I sometimes see colorful sparkles as well.
I see them mostly when I am looking at something that is not directly in front of me (ie to the side, or up)
And anything that flickers is terrible! The LLND I saw had flickering fluorescent lights - it drove me crazy!
But I can forgive her, because that was the first appt I've had in years where the doctor thought my symptoms made sense.
Even the seeing-your-nose thing! (Jin- do you feel as silly trying to explain it as I do?)
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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I have terrible floaters and spots in my vision and this very weird phenomenon, which I get the impression is always present, Its just much more visible to me when I look at something bright, such as the sky on a sunny day or a white wall.
Its.. like... hmmmm... like this spinning moving weird greyish whiteish clear thing in the center of my vision that just distorts what I am seeing. I have never really told anyone about it, just as I have no idea how to describe it.
Perhaps some of you know what I am talking about. If not, I am just crazy, hahah.
I have Esotropia also. I have ever since I was young and we are not sure If my eye problems are related to Lyme or not. I find it really interesting though, Amy C, that your son has experienced both life before esotropia and after. Its interesting he noticed one of his eyes turns off. I was told after many years by an eye specialist my eyes do that, but was never aware of it myself. Most people do not catch that.
I am legally blind, suffering from double vision, pain in my eyes, a visual tracking problem, poor eye muscle coordination which makes reading a much more energy draining task, so I have been told. I have had this ever since I can remember so I do not know or understand how normal eyes see.
In florescent lighting, I can see the flicker of the bulb, as it is not a constant light source. I see everything in weird washed out grey and it looks like its buzzing, or vibrating. I heard other Lymies get this also.
Anything I look at, this gets much more intense in darker light, is grainy. It looks speckled like when you take a photo of a dark room with a bad digital camera.
All of these are things I never actually noticed as a problem or different until I started talking to my friends and found out that it was not normal.
Nichole D, Keep in mind, any changes in vision in both healthy and sick can result in the experience of headache and eye pain. It is possible that the Lyme might be making your eye muscles weaker, effecting your vision. Or that a sudden change in vision might be putting your eyes into over time trying to see correcting which could be giving you eye pain and muscle weakness.
I know, when I was in highschool and taking the SATS or any long test, because of my eye problems, and probably exacerbated by the lyme, when taking those tests my eyes about half way through the 4 hr test would give out.
My eye muscles would become so weak they could not longer function and my pupils could no longer focus on anything. I would loose my vision, and a friend would have to escort me to my mother's car after the tests were finished.
Don't push your eyes right now. This could just make things worse. And you do not want to end up in a situation where your eyes just can not keep up with you.
See an eye doctor, and talk to your Lyme Doctor about it. Your eye doctor will probably not be knowledgeable on Lyme at all, so bring his results to your Lyme Doc.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Yes I had vision problems. My eye doctor said lyme can hop onto the optic nerve. UGH
It came and went during treatment, but I am still VERY sensitive to light and glare.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Dear Starfall1969 and Skyler, I get most of those symptoms as well! It is really bothersome. Sometimes you get very worried. Any light at all (if I look directly at it) may cause me to see spots. I do have migraines, but know some of this is from another source. The eye doctors do not seem to have any idea.
Dear Nicole, The colorful sparkles usually are by themselves, but occasionally there are several at once. I do not get blurry or blob-like items in there, though. It is not like a cataract. My sparkles are directly in front of my face, not at the side. By the way, I do feel strange trying to explain the nose thing! Mentioning it to other people makes you feel like a weirdo!
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Nicole_Denise: I also find I have a hard time looking up- even just looking straight in front of me (like when I drive) makes my eyes tired really quickly.
A cyst on the pineal gland can cause difficulty looking upward.
This is if it grows too large....many people have cysts that seem to cause no problems.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Hey Nicole. I had vertical double vision, spinning/flashing yellow circles when I closed my eyes, blurry vision, 'torn out' field of vision in upper center of left eye, and watery lines at times in my field of vision. Also, a lessening of color sense and differentiation ('grayed out' vision), and major problems with dark/light contrast.
I realize these are not your symptoms, but I wanted to say that the symptoms that I had all came on very suddenly, and they went away very quickly with treatment. I really have no re-occurence, although I'd say I experience more 'after-images' than I ever did pre-Lyme, and I have retained some serious light sensitivity.
But otherwise, my vision is totally back to normal, after going completely haywire pre-diagnosis and treatment.
So, treat and hang in there, hopefully you will have improvement.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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That's really been what's worrying me the most. I've gone from perfect vision to wondering when I'm going to be blind in one eye in less than a month...it's kind of scary!
I'm starting to wonder if the nose thing is just a pre-cursor to seeing double, because I've started to get episodes of double-vision.
And my floaters are terrible now! I spent a good 10 minutes trying to catch the non-existent spider at work!
But of course- when I have a real spider, I can hardly see it to kill it!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Dear Nicole, I do not seem to have floaters. The nose thing could be my face swelling from allergies, though. Double-vision is very distracting at times. Fortunately, I make sure to refocus and take breaks a lot. As far as seeing bugs goes, I have super radar for insects and spiders. I am as near-sighted as a bat, but I can spot a spider in my peripheral vision from halfway across the room!
Have you started treatment recently? or changed up your treatment?
The kill off of these bugs makes us weak, and can cause muscle weakness. That can effect the muscles in your eyes too. It is possible that might be causing your eye problems. It might not be your eyes going irreversibly bad or anything like that.
posted
Dear Starfall1969, That is exactly the way I am! How strange is this? It is like some bug radar detection device is implanted in our eyes. I am glad to have it lately, since spiders have been getting in like crazy! The hot weather always welcomes the creepy crawlies! I need to be able to see them so I can yell for others to kill them for me!
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![[Smile]](smile.gif)
thanks hugs![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ![[lol]](graemlins/lol.gif)
It drives you crazy!![[confused]](graemlins/confused.gif)
I see little glittery sparkling things sometimes. Do you see those? They are usually blue, but sometimes they are gold or white. I have asked others before about this, and they say that it does not sound like floaters. ![[loco]](graemlins/loco.gif)
![[bonk]](graemlins/bonk.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Eek!]](eek.gif)
The hot weather always welcomes the creepy crawlies! I need to be able to see them so I can yell for others to kill them for me! 
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