My 10 yr old DD was dx with LD Jan. 2011 by LLMD. She was probably born it. I am extremely grateful to this site for helping me find our LLMD & am hoping that you can help me again.
She began having visual symptoms June 2010, blind spots, blurry vision, double vision, constricted visual fields, color vision loss, etc. We saw 2 ophthalmologists & 2 neuro-ophthalmologists. None could see any issues until last week. Her optic nerves are now pale.
She has had all of the symptoms of this condition for over a year but since the docs could not see it, they did not believe her.
She is currently taking Augmentin & Azith. We discontinued GFSE per LLMD to see of it might help.
Are steroids EVER used in LD treatment to reduce inflamation? To possibly save eyesight?
Thank you! Barb
Posts: 8 | From Unknown | Registered: Dec 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Morning,
Sorry to hear about your precious one having such a rough time of it.
A number of us have experienced one or all of those problems till we found help from LL eye doctors. I've not heard of the "pale optic nerves" specifically, but the list of eye problems with Lyme and coinfections is quite long.
Yes, in my opinion, steroids can and should be used for this situation IF the doctor orders it. Normally they keep a person on antibiotics during the time steroids are being used.
Two things we don't mess with when dealing with Lyme; the eyes and the heart, so I am glad to see you doing the research. Good mom!
I've personally noted the problems are worse with high inflammation levels and if I am herxing- toxins.
The one thing that helped me the most is the Glutathione IV push. INSTANT better! Amazingly better.
I was so bad at some points that I could only see in shades of gray. And I had several "blind" spots, could not see at night, double vision, etc.
And it was crazy that not many of the eye docs could find anything wrong. ?????
You might want to have your LLMD or regular eye doc consult with one of the LL eye docs.
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Tincup: Thanks for the great information. I know that it will help. The advice about eyes and heart makes sense. I mean they move to the forefront of any Lyme issues.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Please look at the link below...Your child might be suffering from malabsorption of certain nutrients she needs for her eyesight which can cause optic neuropathy.....
I have heard of celiac patients having similar pale optic nerves...
posted
I know we're all different, but you could try this simple remedy and see if it might help:
I drink mangosteen juice to stop Lyme eye symptoms. It's an anti-inflammatory antioxidant juice that scarfs up free radicals produced by inflammation.
There are lots of juice blends in healthfood stores and online. I tried the Ultra one from Trace Minerals, with 70 minerals added.
Within one hour, my eye muscle pain and blurry vision decreased.
24 hours later, those symptoms were gone, along with eye floaters and light sensitivity!
I still drink a 1/2 ounce in the am and pm. If you try it, go slowly, and drink water too, as it can be powerful.
And prior to doing this, I had gone to a neuro-opthalmologist who couldn't find anything wrong with my eyes, even though he had to anesthetize my eyes for me to be able to look at light!
Posts: 13116 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Mangosteen juice is an antioxidant that can reduce inflammation and reduce symptoms. You can also get it in capsule form.
I read the link that Bugg provided...one of the nutritional problems it mentioned is B12 deficiency. Sublingual B12 is easy to try and not expensive...any excess supplement is excreted in the urine.
Another anti-inflammatory is systemic enzymes, like Wobenzym. You can reduce the inflammation without steroids this way.
Is your daughter taking magnesium and fish oil? These are important in reducing inflammation.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
PM sent.
Posts: 8981 | From Illinois | Registered: May 2006
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Robin- that is amazing. I have had eye issues that have always correlated to my health. Like my eyes would start to go as I would start to enter what I thought was a lupus flare. Now I know better.
How interesting! I wonder what the sugar content of the mongosteen juice is.
Carol- good info too! Thanks.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
kt, the juices list varying amounts of sugar. I think one of them with the lowest sugar content I've seen listed is the Mango-Xan one - it's more tart. It works for me too.
But the Ultra mangosteen version is the only one that hardens my nails as well, since it has the Trace Minerals 70 minerals added to it.
Yes, it would be possible to go with the more tart juice and order the minerals separately from Trace Minerals.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Xango mangosteen juice contains 3 grams of natural fructose per ounce. You only need 2 oz a day. That isn't much fructose.
It is the original mangosteen supplement brought to the United States in 1992, and in my opinion, the best.
Yes, I can market it, but I'm not asking for anyone to do anything. This is for information purposes only.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
So sorry your daughter is dealing with this. My three young children have been dealing with lyme for the past 4 years and are doing so much better. One of my sons has had eye issues since he began lyme treatment over 3 years ago. His issue is that he sees orange spots, particularly when it is dark, so that it is hard for him to see.
Lately they had gotten really bad and I think I may have finally figured out that they are related to parasites since we have recently started stronger parasite treatment and they are diminishing. We think that my son's lyme is gone. This is really his last remaining issue, along with the overly emotional behavior that seems to come when his spots are bad.
Your daughter's case sounds different and I would suspect lyme or bartonella or both could be a factor. You would probably want to consider treating parasites as well though.
I wanted to write to you because when this all started with my son, we took him to a lyme literate neuro-opthomologist in Lancaster, PA. He told me that bartonella can cause even more serious eye issues than lyme. He was not able to help us determine the cause of my son's symptoms since the examination was normal. He thought that my son's vision issues were coming from his brain. But he was very nice and seemed knowledgeable about lyme/coinfections.
Since he is familiar with lyme disease and bartonella in the eye, he might be worth a visit or perhaps he would do a telephone consult to start.
As a precaution, in case it is bartonella causing the issues, you might ask your LLMD to presscribe an antibiotic that hits bartonella such as Rifampin. All 5 of us in my family had bartonella, babesia and ehrlichia along with lyme. Most people have several coinfections. Rifampin may hit ehrlichia as well. My son took zith and rifampin at the same time.
Another excellent option for bartonella which helped us all was Cumanda from Nutramedix. You can give you drops in water twice daily on an empty stomach. We stared taking this herb along with our antibiotics and then eventually switched our entire protocol to herbs, which are what are finally healing us.
I hope this helps,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by unknowncause: Thanks, all. We have been working to reduce any inflamation & will be trying all suggestions.
How are your daughter's eyes doing? Have you been able to try any of the suggestions?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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