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In one year my daughter (8 years old) has gone from sighted to legally blind.

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Posted 3/5/2015 3:47 PM (GMT 0)
She has been bounced around from specialist to specialist for over a year. I, as moms do, started studying and with some great circumstantial people in my life was able to figure out it may be Lyme Disease. So I had the Igenex tests run and flew to San Franscico to see a llmd (we are in TX). Diagnosis made, and she is 4 weeks into treatment. She has had arthritis for three years and has lost her vision over the past year. The vision lost includes severe light sensitivity and constant eye irritation.
I was wondering if others experienced this type of vision issue and what type of prognosis I might expect for her.
Thank you!
Posted 3/5/2015 4:09 PM (GMT 0)
hi, welcome to the forum. Arthritis is very common in Lyme. I have a lot of joint and muscle pain. It tends to move around my body. Very strange. I am not sure about the eye issues, but you are in the right place and I am sure you will get some really good insight. Lyme is really very strange and I would not doubt that it can cause those eye issues.

I wish you all the best. You are in the right place to get help and support.

What treatment is your daughter on? How is it going so far?
Posted 3/5/2015 4:45 PM (GMT 0)
Mom:

Yes, Lyme does cause eye issues. There was an article on a man that went blind for...20 YEARS! He got his eye sight back after 20 years, and of course, after he treated for Lyme! Have faith, she can get her vision back, if she is treated properly! Maybe others can find a link to the article--it was posted here a week or 2 ago.

Also, my son's eye prescription doubled within 2 years since the first visit. His first vision test was just around and a little after he was bitten. He didn't have eye problems prior to being bitten. Bartonella can cause eye problems too, so it is important she does get a clinical diagnoses for barto based on symptons, even if the test for barto is negative, which is what often happens with co-infections, even through igenex.

Post Edited (Simela1) : 3/5/2015 2:58:09 PM (GMT-7)

Posted 3/5/2015 4:50 PM (GMT 0)
There are patients at our dr. with eye issues... it does come back with lyme protocol and healing. But, like all this other lyme awfulness, it all takes a lot of time :(
Posted 3/5/2015 9:51 PM (GMT 0)
I'm so sorry that your family is going through this. It must be very hard to see your child go through that. I hope you guys can find a good doctor and that they can help.
sending good thoughts your way.
Posted 3/5/2015 11:03 PM (GMT 0)
Thanks for all the kind words of support.

Her first treatment is 1500 amoxicillin and 250 azithromycin. She has gone gluten free and dairy free. Drinking lemon water daily (which thankfully she loves!). No signs of progress four and a half weeks in. I know it can take awhile, was just hoping for a little something.
Posted 3/5/2015 11:33 PM (GMT 0)
Was she seen by an ophthalmologists, not an optometrist for eye issue(theres a difference). what did her test results reveal about Lyme disease?
Posted 3/5/2015 11:48 PM (GMT 0)
Progress is always slow. Andrew is 9 months in, it took 6 months for him to "come back to us" and not be looking in the eyes of psychosis and raging. In a 16 year old boy, that is very scary and heartbreaking. I understand. We will all be praying and hoping for you and her, time heals....it's SO HARD to wait. Andrew is still not in school full time, but goes part time with continued home instruction. He should have been top 10 in HS, lead in the play and had his Eagle Scout rank by now... lyme is heartbreaking. But, the fact they are alive, in treatment and healing is something for which we need to be grateful (so they keep telling me!).

Hang in there and give her lots of hugs :) That is something I could not do for him, even now he's often yelling just leave me alone :( For the first time in over a year and 1/2, I did get an "I love you too" two nights ago! Something to hang on to these days!
Posted 3/6/2015 12:39 AM (GMT 0)
Mom so sorry to hear about your daughters vision.

I have heard of loss of vision and hearing from Lyme.

I would recommend probiotics and vitamin d3 with calcium. Multivitamins good too.

I used ammox with very good results. My son had no result with Azithromax. Ask Dr to try Cefdinir because my son is late stage and had great results with it. I am using Cefdinir and Doxy with great results.

Godspeed.
Posted 3/6/2015 3:02 AM (GMT 0)
We did see an Ophthalmologist. She has also had two MRI's on her brain and orbits. Everything is perfect, well, except that she can't see.
Posted 3/6/2015 1:18 PM (GMT 0)
A belated welcome to you!!!

So very sorry for the reason you're here. It's bad enough to be an adult battling Lyme but, it's upsetting to know that children are suffering, too.

As a mother, I feel your pain.

Please be rest assured that it's entirely possible for your daughter's sight to return. Lyme does a number on MANY body systems but the potential for healing is great with proper treatment.

We are here to support you throughout this journey. Please visit often and, in the meantime, know you and your daughter are in our thoughts and prayers.
Posted 3/6/2015 2:01 PM (GMT 0)
Mom IV Rocephin also comes to mind.

I know a lot of dr are using oral meds but with loss of vision it may be something you want to investigate for faster results.
Posted 3/6/2015 4:06 PM (GMT 0)
Did the Ophthalmologist tell you the specifics of what they look for in different kinds of vision issues?

The issues can be IN the eye(s), IN the optical nerve (before or after the "Y"), and then where the single end (brain end) of the optical nerve "plugs" into the brain.

I experienced acute temporary blindness in both eyes six years ago. It was the dark type, not focus or "tunnel" type. Daylight was like nighttime outside, not 100% blackened out, but dark like 75%. Luckily, it fixed itself in a very short time frame, I was not on ABX then. I had a lot of other weird things going on with my body then too.

Since it was both eyes, they said it was the optical nerve where it joins to one. I was told focus issues, or the narrow "tunnel" thing is an issue IN the eye, which was not my case.
Posted 3/6/2015 4:10 PM (GMT 0)
I wonder if nerve supporting suppliments would help - for vision?

There is a post here on nerve support supplements (nerves in general) that Mister Mike posted.
Posted 3/6/2015 4:16 PM (GMT 0)
Correction - I posted it about nerve supplements..

Post title on next page:

"Mister Mike - Question"

(Sorry but I can never paste a thread link from this forum, back on the forum. It just goes to the general lyme forum, not a specific thread.)
Posted 3/6/2015 4:19 PM (GMT 0)
Welcome to the forums! You have found a great place for support and info and we are glad you are here!

As others have said, lyme definitely can affect the eyes, but more specifically, Bartonella, a very common co-infection loves the eyes. Has she had any other symptoms of Bart? If so, is her LLMD addressing it?

So sorry you both are dealing with this but you are on the right track to healing. Your daughter is lucky to have such a pro-active mom fighting alongside her!
Posted 3/6/2015 5:24 PM (GMT 0)
Hi MomfightingLyme!!
Welcome to our community!!

I'm so very sorry for all that you and your daughter have been through!

I didn't notice you saying anything about your daughter detoxing, so can I ask what she is doing to help her body detox? Drinking lemon water is helpful, but there are lots of other things that she should be doing as well. Not detoxing is enough to stop progress in her Lyme treatment.

Also, as Lymie mom x 2 has asked - what about co-infections? Has she been evaluated for any co-infections, particularly Bartonella? Bartonella likes the eyes a lot of times and it may need to be treated before the Lyme.

The abx that are being used may not be the right combination for your daughter as well. Most people have to try a few different combinations sometimes before finding the right ones for them.
Posted 3/7/2015 12:24 AM (GMT 0)
My Dr recently gave me antibiotic eye drops. Ive had floaters for a very long time which antibiotics havent stopped. I also have pupil irregularities. I did have blurry and lower vision when first diagnosed but the abx helped. The drops improved floaters.

Post Edited (BarnGurl) : 3/6/2015 5:27:11 PM (GMT-7)

Posted 3/7/2015 2:44 PM (GMT 0)
Hey Barngurl! It's nice to see you back!! How are you doing?
Posted 3/7/2015 4:23 PM (GMT 0)
Hi Trav, Thank you and good to see you as well. I am doing okay overall but have consistently relapsed off medication. I function very well on it, thankfully. Son also still being treated.

And I hope the blessed new addition to your family is doing.
Posted 3/7/2015 7:25 PM (GMT 0)
Hi MomfightingLyme,

Like everyone here, I'm so sory to hear your daughter is going through such a scary experience! I did get an eye infection years ago that the opthalmologist said was Cat Scratch Disease (Bartonella). She did minor surgery (I sat in her chair and had numbing drops put in, then the inflamed infected tissues was removed from inside the upper and lower lids). I also had Lyme at the time but didn't know it.

It doesn't sound like your daughter is dealing with this type of infection, but I wanted to let you know that I also went legally blind for about a month after this experience. I was given antibiotic gel and drops to put in my eyes twice a day, plus an oral antibiotic. Eventually, at least a couple months later, my sight came back as clear as ever.

I hope these responses give you hope! Hugs & good luck to you both!
Posted 3/22/2015 7:56 PM (GMT 0)
Hi All!
Thanks for all the wonderful advise.
Let's see....
Eyes are perfect inside and out (except for blindness/photophobia). The nerves blood vessels all are perfect.

New abx started... Cefdinir and Clarithromycin

Detoxing with lemon juice, baths with Epsom and hydro per., and activated charcoal.

And yes, it is so hard to watch my sweet girl go through this. She is absolutely amazing. Most would be angry and striking out... She is excited to learn Braille. We try to keep everything positive, that helps. I cry alone.
Posted 3/22/2015 8:09 PM (GMT 0)
Our daughter dealt with photophobia and the eye pain caused by it for several years, but her vision has never suffered to any extent. Bartonella/babesia treatment resolved these issues completely.

I pray your daughter's treatment helps with her vision.
Posted 3/22/2015 10:30 PM (GMT 0)
Mom good to hear from you. Thoughts are with you and your daughter. And prayers for a speedy recovery.
Posted 3/22/2015 10:39 PM (GMT 0)
Is she taking anything for inflammation? Lyme is an inflammatory infection, creating inflammation between our cells. It could be that this inflammation is putting pressure on the nerves to the eyes - which means it likely will resolve with treatments.
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