LymeNet Flash: My eyes are killing me!

This is topic My eyes are killing me! in forum Medical Questions at LymeNet Flash.

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https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/30830

Posted by Meemer (Member # 6620) on :

Hey Y'all,

The light sensitivity is the main problem I still have. I find I can't watch TV for long, or sit at the computer without feeling incredible pressure behind my eyes. It makes me feel nauseated. Is this ever going to resolve? Is there a cure for this part? Other than this symptom I am doing well on Doxycycline. Does anyone have a happy ending story? I need to know it will go away.

Meem

Posted by 2bostons (Member # 6249) on :

Hi Meem

I sure hope that someone answers your post! I have had consistent eye pain since May, however I was initially undertreated for LD. Now I have a new doctor and I am doing bicillin injections and probenecid..so I am hoping that this is something that will eventually just disappear!!!

Cathy

Posted by Meemer (Member # 6620) on :

Cathy,
Thanks for the post. I'm sorry to hear you have the same problem. If anyone can help us, it's the people here.

Meem

Posted by sarabear (Member # 6530) on :

I'm in the same boat! I haven't found anything that helps--but I recently ordered some NoiR glass and they should be arriving shortly. I've heard good things...

Feel better!

Sara

Posted by Corinne E (Member # 4670) on :

Well Meemer, I am going to weigh in here. First, get yourself to an opthomologist that specializes in glaucoma/irisitis/uveitis. Horses who are often bitten by ticks suffer from uveitis, which left untreated can lead to severe irisitis and glaucoma. After 2 years of being misdiagnosed with lyme and with glaucoma, I came down with a very very severe case of low angle glaucoma. I now have lost about 40% vision in right eye, not loss of sight but suffer from vertical and horizontal double vision and have to wear special yellow tinted glasses with a strong prescription that acts in reverse. Have 2 holes drilled in eye for drainage, have lots of pain, dryness, itchiness, burning and a host of other symptoms I would not wish on anyone. My left eye also has glaucoma and had laser surgery on it.

I expect this operation to be successful for about 5 years, then will have to go through same operation again, not something I am looking forward to.

I was told repeatedly that it was only migraine and dryness. When you see opthomologist, ask for the most extensive tests. Glaucoma is being seen regularly in teens now, not an old person's disease. You do not want to lose your eye sight, having lyme, bartonella and severe problems can really make living difficult, but it seems I have found and am finding inner strength to cope and outer strength from people here on lymenet and canlyme (Canada).

You have to be your own healer and do not take no for an answer. If one opthomologist will not work with you, then go to another.

As for what else can help you. Those noir glasses help a lot, I just bought a portable plug-in light with "daylight" lighting. A friend of mine, his father just died from major eye illness, glaucoma one of them, and when in Vancouver General Hospital in BC they told him about this kind of lighting. It has made all the difference in working on computer, reading and can you believe it sewing. I still have to get someone else to thread my needles and it is a good thing I can't really see to the full extent the quality of my sewing, but hey everything is staying together.

Look up posts by TinCup, she has some really good posts about vitamins, supplements and advice about eye problems. Because of one of her posts, I knew I was in trouble and went to hospital right away, if I had waited a few more days I would have lost my sight entirely in right eye and more in left. I consider her my guardian angel, but then I consider all the people on this site my guardian angels. Even with eye problems, I have been working for past 5 months and have an interview for a new job tomorrow morning. I know I will look strange with my "special" glasses and my particular kind of gait, but I must admit I have more confidence than I have ever had in my life.

Take care,

Corinne

Posted by fish (Member # 4096) on :

Do you know about the lyme-literate neuro-opthamologist in Lancaster, PA (east of Harrisburg)? He treats adults and children.

I just came from his office last week - my two kids had routine eye exams with him this month (their first eye exams ever) They both have lyme and I wanted to make sure lyme hasn't affected their eyes. He was absolutely positively worth the trip. Only took 3 weeks to get appointments with him. If you have an emergency, maybe quicker.

He is a good talker, listener, thorough, nice nice man. He is very lyme-literate and well-respected.

Email me with contact information if you want it.

Leslie

Posted by lymemomtooo (Member # 5396) on :

Hi Fish! I agree about the neuro-opthomologist..He is great!

Also for Meem, he has prescribed Restatis, 2 times a day..It has also helped my daughter.It would be a good drive from Potomac, but worth the trip..He is very lyme literate and very wise!!! He actually was a contributor to the ABC's brochure if you have seen it.

I have also been told that the eyes are very sensitive to toxins and show effects of the disease..Some detox things may help..I also agree that if you click on the top search button and type in eyes and Tincup that you will find a volume of good info..lymemomtooo

Posted by treepatrol (Member # 4117) on :

Mine did the same thing in the beginning watch sunlight with doxy it makes you light senseitive skin,eyes etcI remember the first year and previous to treatment wife would turn on a light stung my eyes .

Posted by Meemer (Member # 6620) on :

Hey you guys!

Thank you all for all your wonderful information. I do want information on the eye doctor who is lyme literate. You can email me with that info. I'd really appreciate it. Some days are bad, and other days I think it's going away.

You all are so supportive and helpful. I'm glad I found y'all.

Meem

Posted by fish (Member # 4096) on :

Sorry just seeing this now...

Yes I'll email you his info.

Hi Lymemomtoo! Praying for your girl still...

Leslie

Posted by bg (Member # 46416) on :

Meemer,

yes, go to www.noir.net to see what they have. Order from there and mention MARSHALL PROTOCOL and they will give you a 20-25% DISCOUNT!

The 2 pairs you need are AMBER ONLY 901 and 907, which are the adult size wraparound for your perifial, sp.

They were $25 and $48 online.

I had my local eyewear store order a "kit" of 10-12 pairs. They charged me $10 more on EACH pair & NO MP discount! disgusting.

My side bow broke last night. I understand they are very good at replacing FREE those broken or scratched on their PLASTIC frames.

Corrine, would you mind editing your post to shorter paragraphs of 6-8 lines. Too much brain fog & can't concentrate on what you wrote. I don't want to miss out on anything good you have to say.

Thanks to all for breaking up their paragraphs. An ENTIRE screen of text is not good for us w/severe bran fog. Betty G.

Posted by bg (Member # 46416) on :

meemer, here is some more info on NOIRs plus other stuff...don't have time to delete; time crunch of going to dr. Betty

Info galore on NoIR, NO infrared/UV sunglasses:
http://www.marshallprotocol.com/view_topic.php?id=4&forum_id=2&msg=3

Testimonials about going without wearing your NoIR sunglasses after you get them and your extreme herxs!
http://www.marshallprotocol.com/forum2/1743.html
yes, go to www.noir.net to see what they have. Order from there and mention MARSHALL PROTOCOL and they will give you a 20-25% DISCOUNT!

The 2 pairs you need are AMBER ONLY 901 and 907, which are the adult size wraparound for your perifial, sp.

They were $25 and $48 online.

I had my local eyewear store order a "kit" of 10-12 pairs. They charged me $10 more on EACH pair & NO MP discount! disgusting.

My side bow broke last night. I understand they are very good at replacing FREE those broken or scratched on their PLASTIC frames.
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Disability Insurance Issues for getting SS Disability benefits, etc.:
Disinissues website - http://groups.yahoo.com/group/Disinissues

Check their links/files for wonderful info galore especially the link of the female DR. who has a 20 page detailed app showing specific things of what she can NOT do in order to do her job! It's one to print & then use for your own situation.

To fibro/CFS members,
I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, ALS, etc.
Hope you each find some good info there.
Saw it's from Art Dougherty, Calif. in 2001. http://www.geocities.com/lymeart3/misdiag-links.html#disease

from Kara Tyson,
If you are coming off of Cobra then you should be able to get into a pool thru your state.
Almost all the states have this.
I am in the process of doing this.
Here is a link for you. http://www.statecoverage.net/matrix.htm