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sophie 66
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/22/2009 9:04 AM (GMT -6)   
Who has been affected in the eyes by Lyme? My vision is really weird...............I can't be on the computer for long and things look out of focus. My eyes feel really tired, sort of like the filmy feeling you have when you wake up. I have not been able to drive at night for weeks! Since being on antibiotics it has improved but it comes and goes. This is really whacky!

Any input?

cleo springs
Regular Member


Date Joined Aug 2009
Total Posts : 76
   Posted 8/22/2009 12:10 PM (GMT -6)   
Hi, Sophie,

I had optic neuritis 2 yrs. ago, which caused a lot of pain around my left eye, "flashing lights",
a blind spot, and fluctuating vision; all of these symptoms were intermittent. An MRI showed inflammation of the optic nerve close to the eye (but not back throughout the brain).

Unfortunately, this was before I knew that I had lyme, so I was treated with high doses of steroids. Apparently, lyme loves steroids. Oh, well, who knew...?

Since that time, I have continued to have fluctuating vision in that eye. I have two different prescriptions of glasses and contacts for that eye. I started oral antibiotics in Feb. 2009 and IV abx in June 2009. I have significantly less pain, haven't had the 'blind spot' in a while, and I seem to see better most days. Before treatment, I also had trouble seeing on the computer and when reading the paper and books. Enlarging the type helped. I haven't driven at night since being on the IV, so I don't know whether my night vision has gotten better, but like you I had noticed quite a bit of trouble driving at night. (Someone told me that the computer screens are the only reading situation where we are looking directly AT light; so that makes your eyes tired more quickly). I have required a lot of light in rooms where I am reading. There is not a "book light" made that allows me to read in bed, with other lights off. This "light" requirement seems persistent. I also turn on all the lights that I can when using the computer. Typing on the computer in the dark (like I'm trying to do right now) is really hard. I need to replace a light bulb and flip on the overhead light. !!!

I have noticed that my reading comprehension has increased; whether that is specifically "eye" related, or cognitively-related, I can't really say.

I have also experienced conjunctivitis, an irritation of both ' eyeballs" particularly, prior to and immediately after starting oral antibiotics. That has reduced quite a bit since starting the IV, but not completely gone away.

Do you wear contacts? Some days my eyes are so dry/irritated that I have resorted to wearing glasses for days on end (which I HATE coz I look dorky). I have some type of eye drops for conjunctivitis, and just regular eye drops for contact lens wearers. I am more comfortable with using either eye drops regularly.

Good luck with your treatment. Yes, it IS wacky!!!! My doctor said, think of it as if you are a glass window, and lyme is a thick film over the window. Your treatment is gradually swiping off that film, but it will take time to slowly remove all of it. Good analogy for me (I'm impatient and want to be better RIGHT THIS MINUTE!) Good luck!

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/22/2009 3:02 PM (GMT -6)   
i was sent to a eye specialist after i found a lesion in my left eye. i have been very sensitive to light for awhile now and cant read anymore as everything is blurry within arms reach.

i was told i had very dry eye, with can be related to my arthritis. then i had a MRI of the eye and brain, this is when they found the lesions in my brain.

all eye test show i have 20/20 vision. but no one can explain why i cant read a book. or anything else unless its across the room from me.

then i started haven a feeling in my eyes as tho they were about to pop out of my head, and everything goes blurry. like walking into a smoke filled room. this will last from a few hours to a few days. i have yet to find a Dr. who can explain this. even my neuro is running every test under the sun and cant figure it out.

is it from lyme? i cant say for sure. but i do believe it is.

i so hope you find relief soon. and answers would be better.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Vitamin Grama
New Member


Date Joined Jun 2012
Total Posts : 8
   Posted 11/19/2012 12:39 PM (GMT -6)   
I suffered with horrible strobing vision/ flashing lights etc for about 15 years before I was diagnosed with Lyme. I called it "Picasso Vision" because it is so fragmented. It would happen at different times and my doctor had me get a brain scan, and try migraine meds. No one new what it was or how to treat it. I would have to pull over if I was driving and if I was at work on the computer, I had to fake it because I couldn't see well enough to work. After I started taking Samento for lyme, the visual disturbances stopped! I also had crawling sensations under my skin that also stopped.
I recently became unemployed and had to back off on the samento, banderol and detox treatments. My symptoms all started returning after a few weeks. I was taking 5 drops twice a day before and now am starting them again. I hope to have relief soon because it is very inconvenient. The Banderol breaks down the biofilms and lyme cysts so that the Samento can kill them. Most recommend a bigger dose but the Herx reaction gets too severe from the die off. I am allergic to antibiotics so the herbal treatments are what I use.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 11/19/2012 2:54 PM (GMT -6)   
I have a ton of vision problems-constant visual "snow"/"static", floaters, seeing yellow light, after-images, occasional shaking lines in my left eye, lower corner of vision, and when I look at a patterned surface, it looks like it's kind-of wavy. I also have sensitivity to the sun and my eyes sting and burn. My LLMD said that this is from Lyme and that he thinks it will go away with treatment. Also, Bartonella can cause eye/vision issues so my LLMD is starting me on Bart. treatment.
I had a brain MRI and 2 eye exams w/ nero-opthamologist, and tried migraine treatment (they thought maybe it was silent optical migraines). All was clear w/ the eye exams and MRI and migraine treatment didn't change a thing, so I think it is due to Lyme.

Vitamin Grama
New Member


Date Joined Jun 2012
Total Posts : 8
   Posted 11/19/2012 3:37 PM (GMT -6)   
I understand. My vision separates into 3 or 4 sections. One area strobes, another has wavy lines through it, one phantom fades in and out and the other area is mostly flashing lights in my peripheral vision. It is crazy. I was trying to describe it to my sister and she interrupted me and described better than I could! Her doctor called it a Migriane aura. It is not. I have since read about it in CANLYME (Canadian Lyme) and they also describe it better than I could. I don't have Bartonella. My co-infections are Toxoplasmosis, Epstein Barr, Strep and some kind of urinary and liver involvement. I was misdiagnosed for at least 20 years

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 11/19/2012 7:46 PM (GMT -6)   
Vitamin Grama,
How long after starting Samento did your visual symptoms improve? I've been on abx. for 3 months and have seen no improvement.It scares the heck out of me. I get scared I'm going to end up losing my vision.

SkimOrDieGirl
Regular Member


Date Joined Sep 2010
Total Posts : 25
   Posted 11/20/2013 9:57 AM (GMT -6)   
I just started taking Samento two days ago and I have the visual static stuff too!

SleeplessNJ
Regular Member


Date Joined Jan 2012
Total Posts : 371
   Posted 11/20/2013 1:49 PM (GMT -6)   
When this all started for me I had painful, raised cysts in the corneas of both of my eyes. My vision was blurred. To this day I get eye problems on and off with a stigmatism and blurry vision. Then nothing. I have a hard time driving at night due to headlights and I have to wear sunglasses during the day bc my eyes are so sensitive.
Check out my blog and recipes: PaleoLymeGal on Facebook!

desperate4dx
Regular Member


Date Joined Sep 2013
Total Posts : 89
   Posted 11/20/2013 6:28 PM (GMT -6)   
Sleepless...did the doc give you an actual diagnosis? I was dx with PIC...punctate inner choroiditis, where I have hundreds of lesions on both my choroids on my retinas. My vision is blurry near and far that I can blink clear at times, and also causes wavy lines in my central vision and dark shadows in the peripheral vision. My eyes are also very dry and sensitive and tear very easily. Reading is difficult especially for long periods of time or with any speed and driving in unfamiliar places is difficult. I have also been on disability due to my vision and neuro issues. However, all of my Drs can't seem to get on the same page as far as if this eye issue is related to Lyme or not.
1989 dx with Lyme (after being misdx. For 6yrs) -tx with IV abx
2008 rebitten? Tx with IV rocephin til allergic rxn -tx with IV doxy
March 2013 World Gets Rocked following prednisone treatments
Sept 2013 started doxy, supplements, GF, DF, SF
Desperately seeking LLMD & complete diagnosis & treatment for myself and my 3 kids!

Garden Peace
Forum Moderator


Date Joined Sep 2012
Total Posts : 4191
   Posted 11/20/2013 7:58 PM (GMT -6)   
One time I could only see 1/2 of my doctor's face. I just figured I was affected by the sun in my eyes on that side of the car. It was my daughter's appt., so I didn't say anything. My husband insisted on taking me to another doctor after he heard about it, even though it had cleared up. Doc said it was an eye migraine, usually brought on by stress and he may have been right since it hasn't happened since and I was under a lot of stress then.

My problem is forgetting where to turn or other similar things, so I haven't been driving. I can't drive at night since it's harder for me to see. My vision does fluctuate some.

Prairiemomma
New Member


Date Joined Aug 2013
Total Posts : 11
   Posted 11/20/2013 11:28 PM (GMT -6)   
Glad that I found this thread! I have suffered on and off with eye issues since being diagnosed with Lyme 2 years ago. It is reassuring (sadly!) that so many of the symptoms many of you listed I too have suffered from, and I also hope that as I recover from the Lyme and Co-infections, these eye issues will go away. I especially can relate to the difficulty with night driving. I also have experienced the "smoke" type vision at night especially, where it seems as if there is a haze in the room, but there really is not. When I've discussed these things with my eye doctor, he is at a loss, but says my eyes look fine. He is not lyme literate. Thanks for the info everyone!

LearnLyme
Regular Member


Date Joined Aug 2013
Total Posts : 332
   Posted 11/21/2013 6:46 AM (GMT -6)   
I think most of Lyme patients have eye issues. I suffered phantom vision, snow fall vision, light streaking, blurred vision especially when over heating like a hot shower or cutting the grass. I still experience some snow fall vision every now and again.
08/12 - LabCorp WB Lyme positive for bands 23/41, but CDC negative
12/12 - Diagnosed with RRMS
10/13 - Igenex/CDC Lyme Positive - 23-25, 31+++, 34, 39, 41+++, 83-93

My Story: http://www.learnlyme.wordpress.com

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 11/21/2013 7:01 AM (GMT -6)   
Gardenpeace,
 
I think your dr is right in saying it's eye migraine, or also called a migraine aura. I had it the first time this summer, and am dealing with it now about 4 times a week, together with cluster headaches (stabbing pain in 1 eye). My neurologist says they are like brother and sister, they often come together.
 
When I feel it coming up while driving (I never think of it, it starts by rubbing my eyes cause I feel something is covering them, and then it starts full force, sometimes switches from one eye to the other halfway) I need to pull over and wait for about 45 minutes for it to go away. Driving while have an aura is suicide.
 
I tried Topamax, but I had too many side effects, now I will be trying Propranolol. It lowers blood pressure, and works like a betablokker (confirmed by my neurologist this morning), so not suitable for everyone.
 
For the other posters: aside from the above, I have floaters (MANY of them), blurred vision, after-images, flashing lights in peripheral vision (half moons passing by, or white waves in the corners of my eyes), pressure on eyeballs. I'm severely myopic, and get my eyes tested every year, and the dr says that they are in great condition, apart from the fact that I'm almost blind smilewinkgrin

aurora0
New Member


Date Joined Oct 2013
Total Posts : 7
   Posted 11/21/2013 8:59 AM (GMT -6)   
My 8 year old son has eye symptoms.  He is also positive for Babesiosis and Bartonella.  Both lyme and Bartonella can cause eye symptoms.  He is on herbal treatment.  We found 2 things that helped with eye symptoms.  Houttuynia (we used Zhang HH) was effective in the beginning.  Improved his eye fatigue/pressure by 20% in 3 days.  After that it had no effect on eye symptoms.  Then acupuncture helped.  It took 8 weeks of acupuncture before we see any improvement.  But then it has been pretty steady improvement, although very slowly. 
 
 
 
 

Garden Peace
Forum Moderator


Date Joined Sep 2012
Total Posts : 4191
   Posted 11/21/2013 1:43 PM (GMT -6)   
MarieLS said...
Gardenpeace,
I think your dr is right in saying it's eye migraine, or also called a migraine aura. I had it the first time this summer, and am dealing with it now about 4 times a week, together with cluster headaches (stabbing pain in 1 eye). My neurologist says they are like brother and sister, they often come together.

When I feel it coming up while driving (I never think of it, it starts by rubbing my eyes cause I feel something is covering them, and then it starts full force, sometimes switches from one eye to the other halfway) I need to pull over and wait for about 45 minutes for it to go away. Driving while have an aura is suicide.

I tried Topamax, but I had too many side effects, now I will be trying Propranolol. It lowers blood pressure, and works like a betablokker (confirmed by my neurologist this morning), so not suitable for everyone.

For the other posters: aside from the above, I have floaters (MANY of them), blurred vision, after-images, flashing lights in peripheral vision (half moons passing by, or white waves in the corners of my eyes), pressure on eyeballs. I'm severely myopic, and get my eyes tested every year, and the dr says that they are in great condition, apart from the fact that I'm almost blind [img]/community/emoticons/smilewinkgrin.gif[/img]


You're the first person I've come across who has had that happen. I've only had it that one time, knock on wood! It was a stressful day when it happened and I think the muscles in the upper part of my eye socket tensed up a lot, so now if I feel that happening I try to massage it and focus on relaxing it and that helps. It was scarey.

SleeplessNJ
Regular Member


Date Joined Jan 2012
Total Posts : 371
   Posted 11/21/2013 9:58 PM (GMT -6)   
Desperate -- he said it was due to Lyme. Gave me a steroid which I didn't realize at the time was bad..but it did clear it up and dull the pain but it kept coming back for years..then stoppers. I still have vision problems but no cysts anymore.
Check out my blog and recipes: PaleoLymeGal on Facebook!

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 11/22/2013 1:15 AM (GMT -6)   
Hi Garden Peace,
 
It can be triggered by stress. Let's hope it'll stay by that one time, knock on wood.
It's pretty scary. During that first time I was thinking 'ok, this is it, I'll be loosing my sight' - lol.
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