posted
I'm lucky, I've been treating for 3+ years and have almost returned to a normal life. I had serious neuro problems with hallucinations, eye problems like the bark of trees vibrating rapidly and the backs of chairs and vertical blinds would move back and forth as well.
After 3 months of a rocephin IV, I went on Biaxin, Plaquenil and rifampin and have taken that every day for three years. The last of my brain fog went away 6 months ago but my problem is this: I still see vibrations or ripples in my vision from time to time so I know I am not yet fully in remission.
Has anyone cleared up their eye problems with another drug? I'm thinking about asking my doctor to put me on leviquin instead of the Rifampin. He is reluctant because of the tendon rupture side effect.
Any thoughts or comments on what might help? Thanks!
Posts: 54 | From New Mexico | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not your eyes but your inner ear system.
Not hallucinations at all, though, a whole paragraph can seem to jump right off the page - or objects can appear to jump far from where they should appear.
It's called NYSTAGMUS. It should get better when lyme & co. are in remission and you are off the strong meds and the liver is happy again.
Some meds stress that system. Look at all the med Rx instruction / mfg. list and see if nystagmus is a side-effect. But it often comes with lyme.
Most drugs will make nystagmus worse, not better.
MAGNESIUM is the number one helper for nystagmus.
Liver support, too (as one cause is toxicity). See the "Tinnitus" thread for more discussion.
Avoid fluorescent lights. Get ride of your blinds and opt for a different kind of window cover (or just don't open your blinds but those vertical ones that move are just way too much distraction.
Such vestibular distractions and stress only stress the brain (as it fights to find a center of balance) - and the adrenal stress response - even worse than just the lyme and treatment.
Do whatever you can to dial down the distractions.
I put a large king sized sheet where my patio window vertical blinds used to be.
I took the blinds down, one by one out of it's little pocket at the top, bound them and put in the closet for when I move.
Then carefully slip the sheet edge into the groves where the blinds were held. Takes a bit of doing and maybe some help. It needs to be lightweight - no more heavy than a normal sheet or lightweight curtain panels.
Be sure the design is not high contrast and consider all light coming through in your pattern choice. No pattern is best. Certainly NOT strips, checks or any lines. Curvy, subtle design perhaps.
If you do this, be sure there is play enough to open and close the curtain but it will appear rather flat when open.
I really just never close them, though, unless a really hot day with blasting sun.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Some kinds of VESTIBULAR REHABILITATION can help with Nystagmus. This is also discussed here. -
[ 06-10-2012, 12:33 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, this nystagmus will likely clear when you get off the lyme treatment and your liver has less stress.
However, if after watching the first video below that "rings" to you somehow, then . . .
SCD should also be considered.
If you might be tested for this, a CT scan is required with extremely specific instructions from the group below. Not just any CT scan can find this, and not even most CT machines will work.
Most doctors have never heard about it. Not even all neurotologists. Get advice from the group below for diagnostics if your LLMD thinks this might need to be explored.
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