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1763947 tn?1334055319

Eye pain warning

I went to the opthamologist this morning. After a long exam I was rushed over to a (lyme literate) retina specialist.  After hours of more tests I was told that I was borderline positive for optic neuropathy which can cause blindness.  This happens to some in late stage Lyme.  I had no idea it existed and I am very freaked out. I hope I caught it in time. I wanted to pass on the info to others.
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1763947 tn?1334055319
Lots of love back to you. Your support is great help!

I want to avoid steroids and the doc thought it was not necessary considering there is another drop that covers inflammation. I hope these 4 drops will stop the pain.

I do have Bart's so who knows which one did the damage. My doc knows Dr Jones very well and had consulted with him on peds cases in the past so I am pretty confident he knows what he is doing.

I have no veins, all my Picc lines have gotten infected and with some heart related Lyme problems, I don't want to risk it again..

I will just pray that it works.
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Avatar universal
I looked at that pubmed article, and two comments:

1 -- It's from 2001, so very possibly out of date

2 -- Alan Steere is a co-author.  He is one of the Great Lyme Deniers.  Beware.
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Avatar universal
My Mum was given the milder treatment and they only stepped up to something strong enough in the very nick of time.

I found this which talks about treatment of optic neuritis in kids with lyme
- it mentions intravenous ceftriaxone plus steroids.
I think perhaps you need to come at this thing with the nuclear warheads out just to be on the safe side.

I also read that bart can cause this as well as lyme - so it may be a question of finding the best combo of abx that may attack both of them.

Finally, I'd ask if going onto intravenous abx for a while could help.

http://www. ncbi. nlm.nih. gov/pubmed/11483820

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Avatar universal
Mojo I'm so sorry to hear this.

I have heard of this but I don't really know anything about it.
The one cosolation I guess is that you got straight to a doctor who knew what it was and knows what to do.
I wish I could do something to help you. I am just sending you lots of love and hope the treatment works.
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1763947 tn?1334055319
Thanks for your well wishes. The doc gave me many drops to help with the pain and an antibiotic drop as well as an anti inflammatory drop.You'vegot's mom had uveitis which is what I was prepared to hear but this is different affecting the nerves behind the eyes. I am seeing the doc again in a month for a progress report.
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Avatar universal
Yikes!  I am so glad you pursued it!  It sounds a bit like Youvegot's mom's story.

What does the specialist plan to do for you?
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Avatar universal
Mojo!  So very glad you went to the doc AND they were wise enough to pick up on this.  Thinking of you, sending you all good wishes and prayers for a quick and full recovery.  Keep us posted --
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