posted
Thanks for bringing this up Betty! And for replies.
I am still trying to get to the bottom of when I got Lyme and since either it progressed sneakily until REALLY REALLY BAD neuroborrelia, babs, bart, myco, and all that viral stuff.....diagnosed since 2005.
I can't be sure if
The eye problem I got in Mass. around the time of the tick bite when I was 10 years old ...that's 32 years ago!(along with cracking/popping feet .... sound like arthritis) is from the tick bite, or not.
I'll never know unless I see some scientific correlation. It adds up either way, I guess.
I know Polly Murray wrote in her book The Widening Circle that one of her kids had a roaming eye kind of problem and I believe she attributed it to the Lyme, eventually but I don't know.
What it would mean is, the difficulties I have from the strabusmus/convergence are not the lyme, and at this point, even if the original lyme triggered it, I have a strong feeling it is post infectious result.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Inner Ear disorders can affect vision in MANY ways, too. And it can fluctuate, depending upon variables.
Watch this guy's eyes in the video below. Talk about "roaming" eyes! This is sort of a nystagmus in extreme, though, and not strabismus. But, just in case, it's good to know about this.
And, oh, not everyone with SCD hears their eyes move. And it can come and go for those who do.
AND - not everyone with SCD will have eyes as bouncy as the guy's in the video. A special test may see the bounce but it can be missed even by inner ear doctors and some of their usual tests. A bounce, too, may manifest as more of a "pull" sometimes, depending upon the patient.
If sound sensitivity is part of this, be sure to consider that, as well. And, only very special kinds of CT scans can dx this. Very few doctors know about it.
[My prelim. scans done locally point to SCD. I'm supposed to go to Baltimore for more detailed evaluation when I can get strong enough to travel. What I thought was all lyme - all along - may only be part of the sound/vision mix-up for me.
The thing is, that if surgery for anything is necessary, for lyme patients, that becomes much more complex -- especially regarding steroids which are common with surgery but troublesome for lyme. Lyme/TBD must still be considered along the way.]
Adrian McLeish's Rare Condition Led to Amplified Sounds Produced From Eye Movement, Chewing and More
By ALEXA DANNER - March 12, 2008
Imagine if every sound you heard reverberated right through your brain. . . amplified and distorted, echoing through [his] skull. . . The sound of his own chewing was maddening.
. . .McLeish described the reverberations of his voice as sounding like a cracked loudspeaker or "like somebody humming through a kazoo."
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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On the plus side, if this is basically strabismus and a simple surgery could help, that could ease up so much fatigue and other symptoms from having to deal with this.
Strabismus surgery is pretty simple these days. Safeguards around lyme should be much easier than with other kinds of surgeries.
If it's not too severe, you might consider the book/video YOGA FOR YOUR EYES by Meir Schneider, PhD
It's pretty amazing some of the changes that can bring. Even for those with just minor annoyances, this can be good.
A google search brings other sources and YOU TUBE has many short video clips - some instructional - about him and the technique (based on the Bates method):
It's going to take me some time to look at all this, thanks a bunch for compiling it.
I do have extra supreme sound sensitivity as well, which for a long time I thought was clairaudience, ever hear of it???
My strabismus/convergence won't require surgery.
My eyes are more "fixed" and sometimes the one eye that has the problem gets a little swollen and with a black circle underneath. Comes and goes, and only on the one problematic eye.
It's hard to operate and I think I've realized that this eye problem is a large reason for many of the challenges I have even related to anxiety.
Not being able to figure things out, see properly, etc. does tend to potentially create an anxiety.
It's becoming manageable. My accupuncturist is GREAT and has assigned me some eye exercises to do for now.
So it sounds like for you, your eye (do you have strabismus/etc?, is NOT lyme induced?????
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Turtle,
While I enjoy a few research puzzles to wake up my brain, most of this had been previously compiled in my own effort to get some sort of a life back.
I do not have strabismus but, rather, nystagmus and a bunch of inner ear stuff - including what appears to be some bone missing in one of the circular canals (SCD).
Lyme can be a cause of that - or it can just be congenital and not really show up for years or decades. The ears can have so much to do with the eyes, I've discovered.
Glad to hear that your eye will not need surgery. My brother had that strabismus surgery in college (he had worn black tape on the inside of his eyeglasses in grade school) . . . and a guy I used to date who wore an eye patch had that done, too, and tossed his patch.
So, it's just that I had some familiarity with this and that.
As you mention your acupuncturist has suggested some things (glad you are getting that treatment), Qi Gong or Tai Chi can also be very helpful for eyes. I'm sure some of the exercises she has given you incorporate some of those techniques.
If there is a book or article that you have a link to from her recommendations, I'd love to see it. Although, I assume, it's more experiential in that she shows you; you do it.
I saw one of the authors (an opthamologist) who diagnosed me - He gave me the whole article but I could only find the abstract on line
I had a horrid convergence disorder (so bad that my left eye was shutting down(called "supression") so I wouldn't see double
anyway, I had about 3-4 months of vision therapy (1x week plus a home program daily) and the problem is 98% better
I was very very lucky that the optometrist who was one of the founders of modern vision therapy is located about 20 minutes away from where I live
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
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Member # 12673
posted
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Larkspur,
Great link. And so glad to hear that you have seen such dramatic improvement.
Can you share the name of the vision program you followed or was it just show & tell and then you go & do?
I need to learn all I can as I'm hoping vision training and finally getting the TBD handled will let me avoid inner ear surgery that has to go through my skull. I've not really started the Yoga for the Eyes yet, but am impressed with what I've read about it.
posted
Interesting Larkspur, so it is possibly linked to that tick bite, since they both happened around the same time.
Unfortunately for me, I never wore the patch they gave me because it made me not be able to see to do the things I wanted to do so I think the eye just doesn't use itself,
But it does cause a lot of challenges, more at certain times than others.
I haven't correlated how the eye challenges and the sound sensitivity are related.
Larkspur, I wish they would do more studies like that!
I'm thinking possibly the initial lyme triggered it then I went on my (merry) way until
the %*(*# hit the fan!!!!!!
I don't have references Keebler, the accupucturist just shows me what to do.
I'm definitely going to look at the Yoga for your Eyes.
And I do think it is because of the Brain somehow since the eyes are an extension.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I am thinking that my daughter was born with her issue as a muscle problem, and not an infection/neuro induced problem.
She was crosseyed from the beginning and had her first surgery when she was under two years old.
Are you asking if it can be lyme induced strabismus that could come from a neurological issue?
My daughter's eye problems would never be resolved with eye exercises. She needed to have her muscles adjusted on the eyeball.
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Yes, I am asking if Lyme, or neuroborrelia can induce this as a symptom.
My eye problem is not overt, or obvious and doesn't require surgery.
It makes it hard to function though.
And given the lyme, I am trying to piece all of this together.
I went to a neuro opthamologist who said this kind of thing is always congenital but is "noticed" at times, not until childhood. Personally, my family has reported to me that it was an event that happened when my eye did something. I don't remember so....just trying to go back and piece this together.
Although I don't know what difference it would make....I'm pretty sure antibiotics won't address this particular long standing symptom.
posted
Here's the link to the home vision program the doctor prescribed for me - it's done on your computer http://www.homevisiontherapy.com/
I beleive you have to have an eye doctor "prescribe" the program but I see on their website they have a list of eye doctors who are affiliated
I think vision therapy (like everything else) is controversial in some circles, but it sure helped me!
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