I am new here. I am 23 dx'ed with MS in 2005 but I have not had a typical course of "MS" I suspect lyme for the past 15 years, though all tests have come back negative for lyme and co-infections...typical.
I am now seeing an LLMD in Mt. Kisco, Ny and being treated with 500mg 3x Daily Amoxicillin. I am 1 week into it and haven't noticed any change thus far.
My main concern is my vision. I have chronic pars planitis "intermediate uveitis" and as a result have cystoid macular edema, retinal vasculitis and posterior uveitis. I have brain lesions and Oligoclonal banding as well as MBProtein in my spinal fluid (negative for lyme). SO as to not get too far into my long list of symptoms...
Has anyone been cured of their chronic uveitis after lyme treatment? I have been on steroid eye drops for 5 years now and I can no longer handle it (high intraocular pressure). I am slowly losing my vision to cystoid macular edema from the chronic inflammation and retinal leakage. Any help would be greatly appreciated.
If anyone can recommend a LLMD/Neuro-opthalmologist I would also appreciate it.
CR
-------------------- 23/m Dx'ed MS in 2005 - symptoms since I was 6. (Questioning Lyme)
Uveitis, Cystoid Macular Edema, Chronic Pars Planitis Posts: 8 | From Upstate Ny | Registered: Jan 2009
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Two things to consider: One, bartonella causes a lot of vision problems too, so you should consider treating that as well (Amoxicillin won't treat it).
Two, I had great results using acupuncture for sudden vision loss from neuro Lyme. It does not work for me for everything but there are specific eye points that worked really well in my case.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Are the tests for Bart. just as inaccurate and unhelpful as lyme tests? I had a whole gamut including bartonella run - all came back negative with an aside saying 30-60 days after infection, the levels go back to normal.. it's been 15 years..
What was your vision loss attributed to? Confirmed ocular inflammation ie. uveitis?
-------------------- 23/m Dx'ed MS in 2005 - symptoms since I was 6. (Questioning Lyme)
Uveitis, Cystoid Macular Edema, Chronic Pars Planitis Posts: 8 | From Upstate Ny | Registered: Jan 2009
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Hi - there is a Lyme-literate eye doctor in PA, a Dr S. I suggest you get in touch with the PA folks here (go to supportgroups at the left here, click on United States/Pennsylvania).
I have been able to help my eye symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice.
My eye symptoms haven't been as bad as yours, but still, I've had outstanding results, as in no more floaters, blurred vision, eye muscle pain. Also less light sensitivity. And it happened immediately upon trying the juice.
There are lots of kinds. I drink the Ultra variety with 70 minerals added. The juice is available in healthfood stores, online, and the strongest version, Xango, is sold multilevel.
If you try it, go slowly, as it can be powerful, and drink a lot of water too.
We've had a couple of mangosteen discussions on here recently. You could do a search for it and read through the discussion.
All the best - Robin
Posts: 13171 | From San Francisco | Registered: May 2006
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