I havent posted here a for a while. I am now with Dr H in NY. He has me on bicillin, levaquin, malarone, plaquinel and nystatin.
I have been struggling with bad Uveitis in my left eye for 2 years now. I started with the levaquin and flared badly for about 3 weeks then. The malarone had no effect really.
Then I had felt really good for about week, loads of energy, brain fog lifted, mood was fine but my eyes stared to flare badly.
I have since added the bicillin and plaquinel and me eye is in really bad shape. OPthamologist said I have a cateract forming (probably due to the steroid drops) and that I have very bad vitritus. He wrote me a script for systemic steroids.
I called my LLMD and he is trying to get in touch with my doctor here I think to recommend IV ricephin.
Has anyone heard of eye symptoms flaring as a herx?? My LLMD says it should not flare like that if the treatment is working,
I am really discouraged and I really felt this treatment was going to work.
Any ideas what is going on?
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Has your eye always been a week spot - a vulnerability since becoming ill?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Yes. always. It is how I got diagnosed through a uveitis screening. Of course after I failed the standard treatment I was told it wasnt lyme and got no more help from the hospital. 2 years now.
I fear if I dont get these bugs out of there I will loose my sight. I am only 28.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I can actually see the organisms swimming around on the lense on my eye. It appears as sparkles in my peripheral vision and when I stop and focus on them I can see worm like things as if on a peetrie dish through a microscope.
Could they all be running for the safe haven of my eyeball? Does Bicillin penetrate the eye?
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Don't even know what uveitis is. My vision went from a -400 to a -850 in two years. now I'm getting all sorts of vision problems. today the left eye went very dark. Like you I actually see the critters some times. I have a lot of very black floaters which obstruct my vision. I have had chronic Lyme for at least 35 years I live in California so it has been untreated so far. I am now doing alternative treatments on my own.
Posts: 2 | From California | Registered: Aug 2008
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
A couple of points,
The symptoms will usually get worse on flareups. The reason is that the body reacts to the fragments of the bacteria that come off when the abx kills the bug. This effect can be minimized with steroids. Short term Steriods in theory are OK during abx treatement. Why? The bug has adjusted its self over time to not be seen by the body, this is how it survives long term even though it grows slowly. This is why abx is needed. The stealth mode of the bug is only for the completed bug, and not the abnormally produced body fragements that come off with ABX treatment. These fragements can produce a vigorous reponse (the Herx). Steriods will mute the response to the fragements.
Prednisone works very fast. It can take effect in less than an hour and lasts about a day. The thing with steriods is not to stay on them for a long time (weeks or longer). Short term doses to reduce the side effects of the abx should be OK. There have been animal studies that tested if steriods had an effect on abx treatment of lyme. No adverse effects were seen as far as I can see from the paper.
I also see those string like things but I don;t think they are the bacteria. A lot of people see (ie no lyme) these and it is thought to be red blood cells that swell up and clump together.
FYI- with some spirocete diseases (like lepto spirosis), the eye is thought to be a resorvoir site.
Forgot mention- rochephin is likely better for eye infections but if you are bicillian already don't expect the super herx you normnally get with rochepin as the first drug.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Good input David thanks. My LLMD is trying to confer with my eye doc right now so I am sure between the two of them they will work out the best way forward.
If they decide to go ahead with the predisone then I will.
As for the red blood cell theory I am not convinced. These transparent worm like organisms are wriggling at all times quite fast and look alive to me.
Is ricephin that much better at penetrating the eyes than bicillin? I did 3 weeks IV ricephin 16 months ago when all this started and it cleared it all up straight away. no herx just got well. I relapsed 2 week later of course.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i have to disagree about the steroids.
unless you are going to die or are going to lose your vision, etc, id steer clear of them, even prednisone.
prednisone is one of the major reasons i am as sick as i am now. it shuts off your immune system, allowing opportunistic bacteria, etc, to get a much better foothold in your body.
i hope you can avoid it but if you need it to avoid long term damage, do not hesitate.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I hope this doesn't sound too ignorant... I'm new to Lyme treatment. But I don't know if you should be on Plaquenil if you are already susceptible to eye probs.
I have just switched to a new llmd and she immediately took me off the Plaquenil that my first doctor prescribed. She said she only uses it as a last resort because of the concern for retinal toxicity and permanent vision loss.
Posts: 345 | From East Coast | Registered: Apr 2008
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Yes I was advised to stop taking it by my LLMD. I dont think it is plaquinel related and neither does he. He thinks he is going to try to get me on IV and sort the eye infection out then go back to cyst busting later in the treatment.
N
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
My LLMD managed to get in touch with both my eys doc and my GP and they are finally all reading off the same page for the first time. Eye doc agreed to hold off on the steroids and I go back to him on Monday.
A decision may be made on IV then I hope. My eye doc has the power to arrange it. Fingers crossed for me.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I'm glad to hear you have a plan.
If I had a very good LLMD guiding me, if I were on the proper abx and if my vision required steroids to get over a temporary emergency, I would not blink twice: I would consider steroids to save my vision.
It can be done safely - if done correctly. I also think there are other methods to consider. Still, do whatever you need to keep your eyes safe.
posted
I know we're all different so I can only speak for myself.
I am able to successfully all my Lyme eye symptoms by drinking Ultra mangosteen juice everyday. Mangosteen juice is an anti-oxidant.
Within an hour of starting it, eye muscle pain and blurred focus ended. Within 24 hours, no more light sensitivity. Also, no more floaters.
Various juice blends are sold in healthfood stores and online. Also multilevel as Xango, maybe the strongest form. All the blends are different. The Ultra has 70 minerals added to it from Utah seabeds. If you try it, drink a lot of water with it and go slowly, as it can be powerful when first starting it.
If anyone tries it and you have a good response, let us know!
Posts: 13117 | From San Francisco | Registered: May 2006
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