posted
I have been having blurred vision for days now. The burning has been going on since March. I just thought that it was allergies, that is what the "doctors" have been telling me.
Now, I have been to the Eye ER twice. Friday and today. I feel like someone scratched my eyes out. The Eye Doctor said that the nerves in my eyes are swollen, and because I have been rubbing them I scrated my eyes. They think it is lyme related, but I don't think they know what to do. I am scared I am going to lose my eyesight.
So, I can't research, even typing this post is very hard my eyes are watering because of the glare of the computer.
Anyone have any suggestions?
Thanks, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Contact your LLMD and ask for a referral to a Lyme literate eye doctor.
If you need your ER Eye docs to consult.. have them contact the LLMD (neuro- opthamologist) in PA.
Hopefully someone here can PM the PA docs contact info to you.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I am so sorry Shalome!
First, try to turn down the brightness on you monitor as much as you can while still seeing what you need.
It sounds like you culd have uveitis or optic neuritis or both. I have read a lot of times where if someone had this with Lyme they were put on steroid eye drops to get the inflammation down so they wouldn't lose their eyesight. But they were also put on good doses of antibiotics to counterbalance the steroids.
I wish I could help you more, but that is what I recall from many posts here and elsewhere. Hopefully someone with more knowledge or some experience can come by and help you!
I am really sorry - it sounds awful. Does anyone have your phone number if you need to talk to someone about this without straining your eyes?
posted
Are there any lyme literate eye doctors in Florida.
I just have the worst case of blurriness and burning pain.
I can get the pain to go away breifly with drops, but the bluriness is still there. It is like I need to put my contacts on, but I have them on or my glasses.
And it is a relativly new script.
Thanks, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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bettyg
Unregistered
posted
shalome
i'm so sorry to read this. i see melanie sent you penn eye llmd, but if she did NOT, pm me and ill send you this promptly tomorrow....later this morning.
yes, use menu to TURN DOWN BRIGHTNESS & CONTRAST on your pc; i have both of mine sitting from 0 to 20 at max!! to much glare is painful to my eyes.
best wishes on finding the source and getting it fixed to give you comfort again.
no eye llmds in florida THAT I'M AWARE OF.
call the nearest support group leader, found on left side in support groups, florida ok
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I really didn't think things could get much worse, but I guess I was wrong. I stil can't see, None of the medicines are working......ugh! I can't watch my 6 year old dancing around very well. I am only 37!!!
The eye doctor said that this 5th layer of my cornea is what swells when people have autoimmune diseases. However, I haven't been diagnosed with lupus, MS, or anything other than Lyme.
I am scared, I don't want to be blind, I have thought so about so many things that I won't be able to do blind. I mean, I can't fix my hair, put on any matching clothes, can't dirve, cooking I am not sure how I would do that, and even how would I know if I was off/on my period??
Scary, scary, scary!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Thanks for the information guys. I called this doctor. I was on hold forever and then the lady was really rude to me.
I explained that I was in Florida and I just started having eye issues and I had been to my eye doctor twice. Friday and then again on Monday.
I asked if Dr. S would consider talking to my eye doctor and help him come up with a plan. She flat said no. I said, well, I understand he helps Lyme Patients with eye issues. She said well, he does.
I said, Well can he just talk to my eye doctor to see if what my doctor sees is even consistent with lyme disease. She said NO, you are not his patient, he will not discuss you with anyone unless he examines you.
I said, well I am from Florida, this is an issue that just popped up and people here don't know much about lyme. She said, Sorry, we have patients that come from all over. I told her, I can't even drive. She said sorry.
I mean it was like she didn't care. She never even mentioned giving him a message, or she wouldn't even take my name or number, or my eye doctors information.
So, I hung up crying. I know they don't want to go giving out free information, but it isn't like I could even get there if I wanted to. And, I am surprised that he wouldn't talk to a collegue about what he has seen/done.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I am very sorry that the phone call caused you to become upset. I do understand how frightening this is as I am also having vision issues currently. So, I want you to know that I truly empathize with your situation.
I also would like to make it clear that I am NOT discounting your experience or your feelings about your experience in anyway...
However, it is pretty standard for a physician to refuse a consult w/out actually seeing the patient first. You may recall that this sort of thing is exactly what initiated the ruckus with our dear Dr. J in CT?
It is especially taboo to do this with a patient that is out of state. Many of our physicians have had to set up very strict procedural practices due to the scrutiny they have been under.
So, while I truly DO sympathize with you... this is NOT an uncommon occurrence, in fact it is quite the opposite... it is exactly the reply you would have received from MOST physicians... and is the reply I would have expected.
I can not speak for Tincup, but my thought was that you were going to try and make an appointment with Dr. S? He is one of the best, if not THE best that we have.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Shalome, I have sent you a PM with all the info on my semi-Lyme-literate MD Opthalmologist in west central Florida. He treats my steroid-dependent uveitis.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Shalome,
I had that happen to me once. I was temporarily blind in one eye, and it was the worst pain I can recall.
The doctors couldn't figure it out. They decided it was autoimmune, but that was an incorrect diagnosis.
Eventually I did energetic testing that showed I had Tuberculosis of the eye!
Fortunately once correctly diagnosed and treated, I got better quickly.
I hope you don't have TB, but I thought I'd share my story, in case you might.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You MUST allow steroids to be injected into your eyes. It sounds a LOT worse than it really is.
I am NOT kidding about this!!!
Too much inflammation will do PERMANENT damage to your eyes....it IS HAPPENING.
Get to a uveitis specialist...immediately!!!
This is what my sister (with lyme) had to do when all she could see was the big "E" on the eye chart.
The shots saved her eyesight.
NORMALLY, I would never, ever suggest steroid shots because steroid make lyme WORSE...fact.
Yes, an "anti-inflammatory" IS needed... in a perfect world...IV MgCl with B vitamins.
In this case, steroid shots, locally given, are the exception.
Note: Humira, shots to reduce TNF alpha (only) must never be given if you have TB (it is absolutely required that TB tests be done BEFORE Humira shots are Rx'd.)
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Needs...
I had inflammation and eye problems from Lyme... from which I was declared to be legally blind due to the damage caused.
May I suggest?
Rather than waiting to do steroids for the inflammation from uveitis, etc... and ONLY because you can't find anyone right now...
This is what I did which worked VERY well for me... recommended by one of my docs.
Vitamin C
Wobenzyme- 3 per day
Querectin- as directed on bottle- max dose
Bromelain- as directed on bottle- max dose
Vitamin E- max dose recommended on bottle.
``````````````````````````````````````````````` I know.. that sounds too simple.. but it has wordked for me and others.
These supplements have anti-inflammatory properties and I was actually found to do better on them than the steroid drops they prescribed .. [doc thought I was doing the eye steroid drops when rechecking me several times].
My eyes cleared up faster than they would have on the steroid drops.
I think I took this combo for about 6 weeks.
If I feel problems coming on... I start the protocol again.
I MUST say you need to check with a doctor before doing anything I am posting about... as I am NOT a doctor.
posted
I wanted to touch basis and let everyone know how I was doing. I was in a tremendous amount of pain. I couldn't open my eyes, they were tearing up at any amount of sunlight, and it felt like I was being poked in the eyes with needles, and my eyes were burning like crazy.
The pain is finally gone, my eyesight is still blurry, but I can live with that as long as the pain is gone!! I went to my eye doctor on Friday, Monday, and Tuesday. He sent me to a corneal specialist on Wednesday. The specialist agreed that I was in a lot of pain and he said that it could be caused by 2 things.
1st, it could be due to my medications. Some medicines are hard on the eyes, and he thinks with the amount of medicine I was on for lyme, I could actually have to medication toxicity. The medicines he was worried about were biaxin and amantidine.
2nd, my problem could be due to a viral infection in my eyes. I didn't know you could get a virus in your eyes, but apparently you can. He said I had 2nd degree burns in my eyes...ouch!!
First he said I had to quit rubbing my eyes, that was a large part of my problem. But, how could I do that when it was the only thing that seemed to help. He said he had only seen one person worse off than me and he put her in the hospital for 3 days. He sewed her eyes shut and put her on a morphine drip. I seriously considered this because of the pain I was in.
I had to do several different things, but I am finally better. I had to take a medicine vacation. Acyclovair for 10 days. Restasis every day twice a day. Rewetting drops every half hour. And for the pain....tea bags!! I was to wet tea bags, put them in the fridge to let them get cold, and then place them on my eyes for 15 minutes. I could do this all day long if I wanted to, and I did for about 2 days because it was my only relief. I kept my eyes closed for 2 straight days because he said the best bandages were closed eyes.
So, I am finally getting better and I am soooo relieved. Maybe this can help some of you before you get as bad as I did....because I was really scared!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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