OK so now it's the eyes!

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springsjean
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   Posted 2/16/2010 8:05 PM (GMT -7)   
Ok so now it's the eyes.  Wondering if anyone else has any eye problems?  I've had incidents of blurry vision, but always returned to normal.  I have flareups of some sort, usually come on with an anxiety or rage or upsetment, my one eye gets extremely bloodshot and irritated and stays like that for a day.  But it always clears up, until now.  I just can't get the blurriness or cloudiness to go away.  I went to infectious disease dr. yesterday and told me to be seen by eye dr. right away.  Went to eye dr. who said is probably irisitis but it looks to be clearing up because not too inflamed.  Couldn't seem to explain coming on quickly or suddenly which is what scares me.  She does want me to come back and run a visual field test.  She didn't seem to know much about lyme other than the fact that irisitis is common with lyme.  Couldn't be a reaction or meds or anything because has been happening off and on for last 5 undiagnosed years.  Gonna try drops and see if clears up.  Anyone else have?

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 2/16/2010 10:30 PM (GMT -7)   
This sounds crazy but do you do liver detox stuff?
hep c , lyme
Dad has lyme


springsjean
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   Posted 2/17/2010 5:56 AM (GMT -7)   
no why?

bucci
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Date Joined May 2006
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   Posted 2/17/2010 10:47 AM (GMT -7)   
springsjean, I ask about the liver detox because toxic liver is connected to so many things. coffee enema take pain away
and clears my brain fog. I remember reading long time ago that eye stuff can be liver stuff , even tears.

Are you on medication? The more I learn about lyme the more I see how our livers are taking a slamming from it just as much as Hep C does. ( I have hep c so I been doing stuff for years for my liver)

My doc wants me doing coffee enema every nite. They're a pain in the butt BUT they always help. I see the difference just looking in the mirror.

Also shot of wheat grass , for me , I feel instantly.

maybe google stuff like eyes and liver? do you know how to do coffee enema?

how long have you had this eye thing going on.?
hep c , lyme
Dad has lyme


bucci
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Date Joined May 2006
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   Posted 2/17/2010 6:32 PM (GMT -7)   
springsjean

I just found this website bacteriality.com and it has lots of very interesting articles and one is on eye inflamation. I'm gonna try to click it on to here but if it doesn't take go to the site and look on right side column for all the articles.tp://bacteriality.com/2007/11/13/eyes/
hep c , lyme
Dad has lyme

Post Edited (bucci) : 2/17/2010 11:47:46 PM (GMT-7)


Tallmom
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Date Joined Feb 2010
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   Posted 2/24/2010 9:12 AM (GMT -7)   
YES!! I am fortunate that the 2 eye specialists that I have seen are both lyme literate. What a blessing. I have the same symptoms that you talked about. This morning I saw a retina specialist who wants me to have a new titer run since it has been about 3 years since the initial lyme showed up. I have a cyst on the back of the vitrus that makes it seem like I am looking thru an old window pane. So his suggestion is to do steroid drops to try to bring the inflammation down and find out what the little lyme buggers are up to in the rest of my body.
Lyme, the gift that keeps on giving...

springsjean
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Date Joined Mar 2009
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   Posted 2/24/2010 9:19 AM (GMT -7)   
Tallmom, thank you so much.  I am going to eye dr. today but she is not lyme literate.  Can you tell me how they tested you and what they found.  My eyes have been blurry off and on since getting lyme but never continuous for this long.  I just can't get left eye to clear.  I have "flareups" of some kind where left eye gets extremely red and then blurry but then goes away except this time it didn't.    Dr. did not see much "going on" but said it was "probably iritis from the lyme".  She said she is being overcautious and doing a visual field test today because of the lyme.  Did you have that and did it help to diagnose?  Can you give me any pointers to ask ?  Thanks again. 

Tallmom
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Date Joined Feb 2010
Total Posts : 7
   Posted 2/24/2010 10:03 AM (GMT -7)   
If I can remember all that he said!!! And if I can see to type ;-)
He did say uveitis is consistant with lyme but he wasn't diagnosing me as such. Thus his reason for the up dated testing. But it was similar He did a ton of tests - most centered on the macula and retina. He did an OCT ( optical coherence tomography test ) This is a photo of the back of the eye.( Ask for this ) Found a cystoid macular edema - fluid leaking from the lining due to this cyst. Can be caused by trauma, surgery, injury diabetes but I have none of those.
They cad do a dye test later if it doesn't get better.
Paperwork said reddening of the eye is common - sounds like what you describe.
Good luck - wish you were seeing a LL doc tho ;-)

springsjean
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Date Joined Mar 2009
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   Posted 2/24/2010 10:05 AM (GMT -7)   
What symptoms do you have, if I may be a pest?

Tallmom
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/24/2010 10:11 AM (GMT -7)   
Left eye, blurred vision. Dull ache off and on. Very irritating!!!

Tallmom
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/24/2010 10:13 AM (GMT -7)   
Also, he said that the vitrious layer is becoming detatched and when it finally lets go I will have 'floaters' Not sure what will happen after that occurs tho.

springsjean
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Date Joined Mar 2009
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   Posted 2/24/2010 10:15 AM (GMT -7)   
OK thank you so much. It will be a great help when I go today to know what questions to ask etc. Best of luck to you. Thanks again.

Tallmom
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/24/2010 10:21 AM (GMT -7)   
Do you have any light sensitivity? Car headlights appear brighter & can be bothersome? I have found that lately

springsjean
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Date Joined Mar 2009
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   Posted 2/24/2010 10:28 AM (GMT -7)   
Yeah tend to close the eye alot when too much light or it gets really aggravating with using computer or watching TV. The vision is not really that bad in it though, just feels like a cloud or film over it. Gets a little discharge in corner in the morning.

springsjean
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Date Joined Mar 2009
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   Posted 2/25/2010 8:06 AM (GMT -7)   
Tallmom - well I failed the visual field test with numerous defects in both eyes. She said she could do an MRI but would rather refer to neurologist as he will probably want to run more tests to rule out neurolyme. Ugh.

Tallmom
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Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 6:23 PM (GMT -7)   
just saw your post! Not what you hoped for but don't despair - there will be an answer. How long before the next step in the process?

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 2/25/2010 7:45 PM (GMT -7)   
thanks. getting worried as very blurry. wonder if could be herx as I am about 7 weeks into zithromax. Anyway have to call lyme dr. friday see what he says to do. went for blood today. may want to see me before i see neuro

Tallmom
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/27/2010 8:01 AM (GMT -7)   
Ugh...do you know about
http://www.ilads.org/ or http://www.lymediseaseaudio.com/ The second has a live chat as well

When I first showed signs it was July 07 and I had what I thought was the worst flu of my life. Ended up in the ER 2x's in a week. Worst pain & dehydration/light sensitivity
ELISA test was positive so that was how I found out. Memory was affected - thought i had alzheimer's as well. A friend whose teenage daughter has late stage Lyme gave me these two sites plus there is a Lyme Log that lets you keep track of symptoms & meds.

Hang in there - sorry I was off but we had a powerful storm and power was out for 2 days.

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 3/10/2010 6:43 PM (GMT -7)   
Tallmom, went to neuro going to do MRI but seemed very dismissive. Don't think he knows lyme. But hate to be a pest but just how blurry is your vision. I am trying to get it go away with drops but so far no luck. I actually can see pretty well just feels like water drop in my eye. My eye feels heavy if I could say.

Cre
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 3/10/2010 7:17 PM (GMT -7)   
This vision question is very intriguing to me. When I first developed symptoms of Lyme and was diagnosed instead with fibromyalgia (ugh -- something like 20 years ago, it seems), I kept telling my fibro. friends that it felt like whatever it is that is wrong with me is coming a whole lot from my eyes. My fibro. friends had very similar complaints.

Eye symptoms have dominated for me. Over the years I have watched my eyes go from vibrant looking to glazed over or dull. I have had LOTS of floaters for at least the last eight years that every eye specialist has blown off. I have pretty severe eye pain, blurry vision, swollen eyelids (told it was just allergies), extreme light sensitivity, vision that seems to change daily and get worse with brain fog, cloudiness, etc. I could go on and on.

Then, a couple of months ago, I got what I thought might be a type of Bell's palsy from Lyme. I had an extremely irritating twitch above my eyelid (right eye). It seemed like a facial or cranial nerve irritation. It lasted for several weeks. Saw an eye specialist who was supposed to know about Lyme. He blewn my symptoms off and the more I mentioned Lyme the less he engaged. Told me my eyes were dry. That's all. I got some GenTeal lubricating eye gel and used that. After about a week the twitching finally stopped, but I am not sure that the GenTeal was really what made it go away.

I have always had 20/20 vision, but in the last couple of years I have had to get reading glasses and they barely help. Everyone chalks it up to aging (I am 46). But I know there is more to it than that. The eyes are so much a part of Lyme and co-infections. Pamela Weintraub talks a lot about it in her book (I've been reading that recently).

I have late stage Lyme that was never acknowledged or treated, so I feel a bit screwed on all accounts! Sorry that I don't have any answers, but I can at least validate your symptoms, I hope? Oh, and I am pretty sure that I have taken the visual field test online a couple of times. No doctor needed. You just need a credit card to pay for it. It is actually available on the site of the guy who invented it, if we are talking about the same thing. I failed (slightly) both times I took it. I can look up the site if you are interested.

GWB
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Date Joined Jul 2005
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   Posted 3/10/2010 7:41 PM (GMT -7)   
Interesting, I just posted this on another lyme forum where this discussion is going on. Here's my response:

Several months ago I noticed a big change in my vision. Was worried enough to see the eye doctor three times in four months. He's not lyme literate but was open to learning about it.

Dry eyes are common for those of us who have lyme disease. My eye doctor put these paper strips under by bottom eye lids for five minutes to test my eyes.. He said my eyes were the driest eyes he's ever seen.

He gave me some goop to use at night before you go to bed but I don't like using it because it's like putting vaseline in your eyes. He also recommended I use Refresh Plus Lubricant Eye Drops with no preservatives. Those are individually wrapped packets with about five or six drops of eye drops in them. Best to get preservative free.

Since I've been taking these drops, and drinking mangosteen juice in the mornings, I've noticed less problems with eye blurriness. Not sure if the mangosteen juice is helping, or if it's just the eye drops, or both, but whatever it is I'm doing better now.

Hope you find some answers for your eyes.

Gary

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 3/10/2010 7:50 PM (GMT -7)   
Cre, have you ever had an MRI? I will surely let you know how mine goes. I think it could possibly be a herx of some type of flare but since some of my worst symptoms have been psychiatric, I have always been curious about my brain involvement anyway. Thanks so much for your input.

betterhealth
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Date Joined Mar 2010
Total Posts : 230
   Posted 3/10/2010 8:17 PM (GMT -7)   
springsjean,

I was diagnosed with lyme this past july and have had iritis and blurred vision. I started to get pain in my right eye just as I was concluding my initial doxycycline treatment. My opthamologist put me on steroid eye drops and amoxicilin which quickly knocked out the iritis. When I was on IV-Rocephin I had an incident where the vision in my right eye went totally blurred for about 1/2 hour. It happend right after a dose and flush of my pic-line. It was almost as if the heprin and saline hit my brain all at once. Make sure you see the eye doctor right away if you experience any further vision problems.

Cre
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 3/11/2010 6:40 AM (GMT -7)   
I have had an MRI in the past year, but not of my head, unfortunately (long, Lyme-related story)! Please keep us posted about what you find out from yours. I have always been freaked out about the tracers/dyes/radioactive isotopes that are used with CT scans and MRIs. I have pretty severe multiple chemical sensitivities at this point and worry about how my Lyme-laden body would react. When I had the MRI last year I had to fight like a dog to not have any IV tracers used.
 
I would love to see a SPECT or PET scan study of Lyme brains/heads? Is anyone doing this? I know that the fibro/CFS research world, and even the IC researchers, are hot on this trail. BUT . . . they are not connecting the dots to Lyme and/or co-infections, of course. They are connecting the changes that they are seeing on these scans to abnormalities in the central nervous system (duh). That IS Lyme, right?! Ugh.

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 3/11/2010 8:56 AM (GMT -7)   
Thank you so much for you post.  I will keep you informed.  I myself had ask previously about a spect or mri since I had a headache literally everyday for four years while trying to get myself diagnosed and have rage and personality changes.  But the doctor said "no you have no neurological symptoms."  We shall see.
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