July 4th marks my one year CDC positive lyme diagnosis. I am doing much better than I was when I first started treatment however I have ONE symptom that has been my biggest plague and refuses
to go away. Its hard to explain but Ill give it my best, its not my vision because I have had my eyes checked and I actually have 20/10 vision but I still cant see the way I used too. Its like my image
processing is off. I can see everything but its almost like my brain wants to focus on one thing and not the big picture. It makes me constantly blink my eyes to try to refocus them and then I end up
getting headaches because of it after a while. In the back of my head Im always worried to myself that I am going blind.
If this one symptom went away I'd be golden at 99% again and ecstatic. Aside from the joint damage it caused all of my other symptoms are gone. I have until August to get into tip top shape because I will be joining the police academy. Fingers crossed.
Back story and treatment
I am 22 years old. Diagnosed last July with a super positive CDC lyme test however it was 2 years prior to that that I was bitten by a tiny deer tick, no bullseye rash. I started doxycycline in July and
immediately began to feel worse. Went to see a ID, big mistake, more doxy and anxiety meds were prescribed. I developed the vision thing symptom sometime in September and thats when I said
enough is enough. Found you guys and you led me to my LLMD, basically the only reliable one in massachusetts.
Treatments: Minocycline Bactrim DS Tindazole
nystatin 50bil Probiotic
ATP fuel for fatigue ( Worked wonders, back at the gym 4 days a week now)
Travacor Calm CP/PRT Balanced D All of these for adrenal support
Detox: Cholesteramine Green Vibrance Pinella Lemon water
also supplement with magnesium and Transfer Factor LymPlus
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Google and YouTube Search:
get the book from library: Bates, "Better Eyesight Without Glasses"
that book serves as a basis for this nice video / book set:
YOGA FOR YOUR EYES -- training -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Nystagmus? Could be. If so, MAGNESIUM is the number one helper there.
and Berberine has helped my eyes tremendously. Although, I still have issues with light, nystagmus, brain focusing, etc. A short time on berberine and my distance glasses no longer worked - at all.
I did not need them. I could see TV even subtitles just fine. Still need readers, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I dont believe its my eyes as the eye doctor said I have beyond perfect vision. Im pretty sure its my brain. Maybe a sensory or a processing issue. Will this help? Just hoping its not permanent.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This holistic doctor's site and his book are excellent:
Book & website: THE EYE CARE REVOLUTION - by Robert Abel, Jr. M.D. (Ophthalmologist)
Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
ASTAXANTHIN - an antioxidant that has great promise for the eyes
Also be sure to get your FISH OIL - Many here really like OmegaBrite - just Google.
TAURINE is an essential amino acid for the eyes. Be sure your diet includes plenty. Vegetarians MUST supplement as it's primarily in muscle meat, fish and eggs (from the cleanest sources). - -----------------
If you any degree of nystagmus where the eyes can spasm . . . be sure to avoid stuff below as it all adds to spasms:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just saw your last post.
yes, it makes sense about central processing. All kinds of processing issues can come from lyme, still, the health of the eye tissues can really improve with certain supplements . . . and that can also help the BRAIN.
INNER EAR issues can also be related. - and that's a whole separate deal. If the inner / middle ear is compromised in any way, the brain can be "slower" to connect and the eyes can also have trouble. The inner / middle ear system really affects how we see, think, put it all together.
Some of the drugs used with lyme, and lyme, itself, can damage the inner ear / vestibular system. It can take a while to get that back and most of the things here help.
Ginger, too, is especially good for the inner ear system, and the brain, circulation, inflammation.
Inflammation can be the connection to when things don't work quite right for various reasons. Call it "processing" or whatever . . . the kinds of herbs that help the eye tissue also help neuro tissue . . . and help reduce inflammation and oxidation issues. They are "free radical quenchers" -- it's worth looking into.
As for retraining. The Yoga for the Eyes can also help if it's the brain not quite in synch.
Beyond that, you might look into: QEEG Brain mapping . . . neuro-feedback. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Cranial Sacral Therapy could help. Find someone trained in UPLEDGER INSTITUTE method. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Qi Gong &/or Tai Chi can be especially good to help the brain processing system. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Just a guess if it is your eyes, as my eyes also tested fine even though I had eye symptoms. I stop all my eye symptoms by drinking mangosteen juice, an anti-inflammatory juice. I like the Mango-Xan version as it's the most tart. It's in healthfood stores and online.
If it's your brain, you will need to keep treating Lyme disease somehow.
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Here's an article on Lyme and vision. I'm not sure if any of it applies to you:
Something I find I have trouble with is image tracking (not covered in the article, but I saw a baseball player who had Lyme and described how he couldn't track the ball anymore which is what I experience).
Posts: 2839 | From California | Registered: Jul 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Lyme affected my vision. I noticed it when using binoculars. Had them set to normal for me, was no longer normal. Had to adjust. And when I took them away from eyes, one eye took more time to refocus.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
It's not like the baseball player tracking issue Judie but it is similar to poppy to an extent . Bare with me guys I'm sorry it's hard to explain lol
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
ASTAXANTHIN does me well..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
My weird eye symptoms, blurry, dry eyes, can't focus have to blink to try and make clear.... are all related to when I am super low on B12.
It's happen for years and I've had blood tests to confirm when I'm low and have the eye weirdness.
It's one way I know it's time for another shot. Right now that's every 3 weeks. I've been doing this for over 14 years now.
Might be worth a try? B12 pills do not help... only thing that helps is the shot form of it.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Ruzzle though the symptom is somewhat similar stuff being to close is not the issue. In fact if anything when things are closer
it's easier to see because I'm focusing on one thing and not Trying to look at several. For example sitting here typing on my
phone was fine but earlier at the mall and grocery story, looking far away at all the images caused me to keep trying to Auto focus my eyes and gave me a headache.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Tbrown2...
I have a background in visual impairments.
You are right...what you are experiencing is a sensory processing (brain) issue, and likely has very little to do with your eyes themselves.
It requires a tremendous amount of brain power to process visual information, as it is very complex (more of our neurons are devoted to the sense of vision than the other 4 senses combined).
It takes less brain energy to focus on a small field (like your phone pad) than a large, complex field (like the aisles in a grocery store).
Because of Lyme's impact on the brain, it can become overtaxed interpreting complex visual information, and fatigue easily (which you experience as visual "meltdown").
It takes time to heal the brain...be sure to let it rest when you are experiencing visual fatigue by switching to an activity that is less visually demanding for a little while. Since you are improving overall, you should gradually notice you are able to handle longer periods of complex visual input without overwhelm...
I had severe sensory/visual processing issues (e.g., couldn't even look at a plaid shirt or a moving ceiling fan), but in my case, all resolved with mHBOT...
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posted
Yes Phoiph thats pretty much whats going on. Every morning like this morning I wake up expecting to be able to see normal but nope greeted by constant blinking and already eyes and head hurt. I am also wondering if keebler is on to something with suggesting Nystagmus or maybe its a coincidence.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Since this is a persistent symptom and seems to be neurological does that mean my meds are not crossing the blood brain barrier well enough or am I just impatient?
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Phoiph
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posted
Tbrown2...
Nystagmus is a neurological condition that causes the eyes to move rapidly back and forth uncontrollably...you don't describe this symptom, and your ophthalmologist would have noted it (assuming you have seen an ophthalmologist...you didn't actually specify who checked your eyes...).
If you haven't been seen by an ophthalmologist, I would start there, just to rule out anything else physically obvious, but they likely won't give you any suggestions if it is a cortical (brain) sensory perceptual processing issue.
Besides a limited ability for the brain to handle complex visual stimuli, other related issues that can contribute to the visual fatigue you describe are a perceptual difficulty with "figure/ground" (distinguishing objects in the foreground from a complex background), and a limited ability to rapidly change focus from near to far (accommodation).
It takes time for the brain to heal, and the visual system is complex, requiring many different components working together in concert. As I mentioned, if you are improving overall, you should notice gradual improvement over time. (And, since it was one of your first symptoms to appear, it may be one of the last to go, as healing often takes place in reverse order.)
For me, mHBOT was key, specifically because it reduces inflammation, releases stem cells, and promotes vascular and neural healing. I would strongly consider mHBOT if you don't see gradual improvement over time.
I would also make sure your diet has enough good fats to provide building blocks for nerve/brain repair.
Also, if you are interested, I can contact an optometrist/vision therapy specialist friend to see if she knows of anyone in your area who can evaluate your vision issues and make recommendations...
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posted
Wow phoiph you hit the nail on the head with that one . I have seen an opthamologist but that was a few months ago just like every other doctor telling me everything was normal. Couldn't hurt to see another one though.
As far as diet goes I eat pretty well. Any other suggestions on what i should take/ eat? Should I continue with my current protocol and wait it out a little longer? Thank you for your help I highly appreciate it
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- Re: nystagmus diagnostics -- neither an eye doctor nor a typical ear doctor will likely be able to help. Best to see a
neurotologist (neuro-otolgist) . . .
one most specifically expert with nystagmus issues. It can be from inner / middle ear, certain toxins, liver damage / neurological damage, etc.
A neurotologist can also evaluate with special tests to know if you have any balance issues that could be causing this and if they are more brain or more inner ear related.
The nystagmus test is with a specific test with specific equipment. SOME eye or ear doctors can see it but most cannot. They just do not have the equipment that is sensitive enough.
See the SCD link. As you don't describe sensitivity to sound / light, it's NOT at all likely (emphasis on not) that you have SCD. Still, study the
video on YouTube by ABC a few years ago: "The Musician Who Heard Too Much" See the kinds of tests they do to see his nystagmus.
Relax, though, regarding what they did to fix his kind as it had other causes than what yours probably does if you have any kind of nystagmus.
You should be able to have identified the KIND of nystagmus that might be going on for you.
But some of the tests where they spin you around can actually be rather rough, even damaging for those with lyme (or not yet in a strong solid remission).
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
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posted
I do have some sensativity to light but attributed that to the minocycline
-------------------- T. Brown
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Catgirl
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Member # 31149
posted
I had nystagmus and vertigo sometime after I got bit. My neuro wanted me to do further tests, but I had a feeling it was lyme related and passed. Lyme and parasite treatment got rid of it for me.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
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posted
Tbrown2
The type of nystagmus that is described above is vestibular in nature, and would likely also present with balance, dizziness, or tinnitus issues...and you didn't mention having those symptoms.
I will PM you some nutrition information, as well as a possible contact for a functional vision specialist in your area for recommendations that might help.
Again, I would give it some time as you are still improving overall, but you could look into these suggestions in the meantime...as well as considering mHBOT to enhance the healing process...it is really the best thing for treating neuro issues.
Also...remember, it is important to give your visual system a rest when it becomes overtaxed by switching to a less visually demanding activity for awhile...
I have a couple more questions for you:
-How is reading?
-When you focus on something at near for a few minutes, do your eyes stay in focus, or do they start to lose focus also?
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Phoiph
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posted
Tbrown2...
Your PM box is full...
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Keebler
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posted
- Phoiph
Would you be able to add some of that detail to the ear thread, too. It sounds like it would be of help to others, too, as they try to figure out what is what.
"Yoga for the Eyes" may also do some of what a functional vision specialist does -- or at least could try that until you find someone better suited. It incorporates "cupping" the eyes in darkness with frequent rests for healing.
Thanks. -
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posted
Reading is relatively easy. When focusing on something close off a while it's normally ok but I just habitually keep moving my eyes and blink a lot to try and compensate so I guess you cold say ya
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Phoiph
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posted
Keebler...what thread are you referring to?
Tbrown2...I just PM'd you...
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