posted
I seem to have developed some vision symptoms that I did not have throughout my treatment, 2 years. This is a concern for me since there is a questionable MS diagnosis hanging in the balance. My new symptoms are eye fatigue, very tired, very achy. I also have had the floaters, not as much as before and slight blurred vision, only in one eye. Any information you could share would be greatly appreciated.
Posts: 69 | Registered: Jun 2005
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My symptoms are a lot like yours and I don't have an MS diagnosis. A while back I remember reading patients diagnosed with MS were trying antibiotics and getting better.
Not sure if this was helpful or not. Have you been to an LLMD yet?
Posts: 738 | From Colorado | Registered: Oct 2004
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Have you thought that this could be a herx? You're symtems seem to go hand in hand with typical Lyme symtems.
I would ask here under Seeking Doctor for a LLMD and get a different point of view.
Posts: 158 | From PA | Registered: Oct 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Nancy,
I had different eye symptoms on and off through out my treatment for lyme. And when I herxed it would go right to my eyes, blurry vision, eye pain, fatigue, dryness, floaters and light sensitivity. However many of my eye symptoms such as double vision, and bad depth perception are gone. So it gets better.
As was stated above, it would probably be a good idea to see an eye doctor/LLMD just to make sure everything is okay with your eyes. Hang in there.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
I had some symptoms that intensified when I started treatment. My vision was one of them.
Herxing can cause an increase in symptoms. You can also get some new ones as your treatment goes on. Eventually, it should get less.
(I had been checked me a few times for MS, but was told I did not have it)
Be sure to let your doctor know. If they think it could be from the meds, they may want to try something else.
What I have noticed is I go through phases with how I feel. I did before treatment and during treatment. But, a few months after I began treatment, I started to feel a little better.
I would still go up and down. But the ups were better than they had been in a long time.
Posts: 240 | From MA | Registered: Nov 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I have had several problems with my eye since getting lyme. I have optical neuritis, eye pain, floaters, and now I wear glasses. All the docs thought it was MS, but after years of treatment my eyes are much better. Glutathione also helped remove those nasty toxins that build up in your body. After one IV push of that stuff my vision was much better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
My parameters: I think I have Lyme with no co-infections, and I take clindamycin abx.
So, having said that, I am successfully treating my eye problems with Ultra mangosteen juice, which I order online now -- just do a google search for it -- it's a strong anti-inflammatory and antioxidant fruit.
Within the first hour of starting the juice(with lots of water -- it's a detoxer), my eye pain went down and my focus returned. 24 hours later, the dark glasses came off for the first time in over 2 decades! Keep in mind I didn't even know what was wrong with me for 25 years until I was told last spring. If I stop the juice, the eye symptoms start to come back.
If you're up for trying it, healthfood stores carry the juice, also Lymetoo works with a strong brand of it. Start slowly, and drink a lot of water, since it is a detoxer.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thsnks Robin I saw the mangosteen in Sam's. I'll stop and buy a bottle. I was buying pomogranate juice there, but last time they only had the mangosteen.
It's comforting to know you guys are experiencing the same sx, I think I got nervous when they started out of the blue, never had any thing going on with the eyes..everything else, but the eyes. I had slowly been making progress. Would a herx come on out of no where? I hadn't changed abxs in 6 months. The set backs, I've discovered, can be h-ll.
Posts: 69 | Registered: Jun 2005
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posted
I can see how these new eye issues could make you worry.
It is important to realize that eye damage can occur at a subclinical level for years and go unnoticed by the person because your brain seeks to compensate as quickly as possible for the deficit.
This is exactly what happened to my husband. He never noted any eye issues prior to his dx with MS. When he got the results of his evoked potentials it showed damage.
It's possible that you had damage as well and now this damage is being revisited with a herx....scary, but it could all make sense.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
I have tons of eye symptoms - I spoke to my LLMD today and he said they are quite common in Lyme.
I am trying to work out what antibiotics are best for clearing the visual problems. If anyone here had visual problems that have gone since being on ABX, could you please list what ABX you found most helpful.
Posts: 263 | From UK | Registered: Mar 2006
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posted
I'm so sorry that everyone has eye symptoms, but I'm relieved to commiserate!
I've had them particularly bad since treatment, but I think they were announcing lyme (especially floaters) years before I knew I had it.
I also have high eye pressure that is in the glaucoma range. When on Rocephin, the eye pressure went back down to normal. Now on Zithromax, it's back up there and the floaters and eye achiness has increased.
I hope to be like a few of you who have said that it eventually lessens and goes away... right now the symptoms are in full tilt.
Just cut an old tree down and the house has more sunlight... so I've got more floaters!
I'll share if I find anything else that works!
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Well, I hope I'm not posting this too soon, but want to share what I believe to be working for me.
I have had blurred vision, grey smokey vision, loss of visual accuity, floaters, dryness, redness, scratchy feeling, blind spots, swelling around one eye decreasing my vision, flashes and probably more.
Pretty frightening especially after having better than 20/20 vision. Well, to cut to the chase, Doxycycline hit me and my gut hard but I noticed some improvement.
My LLMD switched me to Mino low dose ramped to full dose. Since adding rifampin, the eye symptoms are clearing almost daily. Just recently added Plaquenil.
I'm very hopeful on this regimen and don't want to switch any too soon. I've been on many different antibiotics and regimens, but so far this is the best for eye symptoms. Also seems to be hitting the dizziness that has been a problem for four years now 24/7. Hope this helps.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
<---------------- Ahh.. the visual problems. Aren't they great?
The eye problems are the first thing that got me into see a neuro then off to an MRI to look for MS.
If you are worried about MS, OPTIC NEURITUS is the inflammation of the optic nerve. It is usually the first sign of MS. So naturally, lets look for MS when you have eye issues right?
Optic Neuritus usually only affects ONE eye. It very rarely affects both eyes. So this is the first thing you can use to reassure yourself. Do you notice visual disturbances in both eyes?
Next, optic neuritus makes eye movement painful. Does it hurt to move your eyes up/down; left/right? If not, then you probably don't have optic neuritus.
Next, optic neuritus usually clears on it's own within two weeks. Are your visual symptoms lasting longer than two weeks? If so, then you probably don't have optic neuritus.
An MRI will rule out optic neuritus. The optic nerve is real easy to see on the films. Also an eye exam MAY reveal optic neuritus.
Don't let your new symptoms get you down. Lyme related? Probably. Mine are.. Take it from me... Visual Afterimage Man. They are not fun, but they are managable. I'm told that they will improve!
Hang in there.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
Visual problems are no rarety with Lyme. One of them can be optic neuritis. Many drs tend to look at it as a first sign for MS, but it can just as well e Lyme. Optic neuritis does not necessarily affect only one eye. It can start out with one and go on to the other or even afffect both simultaneously. Optic neuritis does not have to cause pain on eye movement. It has nothing to do with eye movement, but with the transfer of nerve impulses from the eye to the brain. Sometimes it can be detected by MRI, but not necessarily. It depends highly on the exact positioning of separate MRI pictures taken. Optic neuritis may, but does not have to clear on its own in 2 weeks /that would have been great!/. An indication of optic neuritis can be given by testing evoked visual potentials /maybe this is not exactly the correct name of the test, but I think it is understandable what is meant/. Neurologists and ophtalmoneurologists are eager to treat optic neuritis with cortisone. Lyme-literate specialists treat with antibiotics. Our experience was that Rocephine worked great and fast, especially for the "eye problems" /vision down to 0,1 and no problem with the eye itself, no correction with lenses etc./ After allergic reaction to Rocephine on the next fallback the alternative was Minocycline,although progress was much slower. Drugs increasing "blood supply" to the eye and optic nerve can also be important and of help - I don't know if the names would mean anything to you, but I'm referring to Nootropil and Agapurin and to Tanakan /Ginkgo Biloba/. Take care! Sofia
Posts: 253 | From Sofia, Bulgaria | Registered: May 2001
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posted
I also have had vision symptoms: floaters, flashing lights, periodic blurred vision. All started about 1 year b/f diagnosed with LD
They have improved, as have many of my symptoms with abx & supplements. My LLMD says vision symptoms are common in LD, particularly floaters.
Posts: 213 | From ohio | Registered: Jul 2006
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posted
I'm just putting in my two cents with eye symptoms here.
Visual issues were among my first symptoms--blurriness, general inability to focus, floaters, flashing lights, after images, etc.
I have been to a number of optometrists/opthamologists, including a LL neiro-opthamologist recommended on here.
All say the same thing--my eyes are fine; whatever problem there is seems to be between my eyes and my brain.
Even the LL opthamologist said he doesn't know what to tell me.
I'm worried now because I'm noticing even more vision loss in my weak/lazy eye--I used to be able to read at least a little bit with that eye alone, now barely at all.
I have tried several brands of mangosteen, and none of them does squat for me.
The LL opthamologist said he doubts I am in danger of total vision loss from this;'m starting to think he's full of it.
Don't know what to do anymore and am sooo ready to give up.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Starfall,
This thread is four years old. You offer good advice but I'd not knock yourself out on this one.
However, I see that you are also voicing problems. Don't give up.
It does not look like you have a LLMD but I hope so. It's common knowledge that lyme brings all sorts of vision problems that an eye doctor may not see.
Lyme causes swelling in the brain - in the nerves. That, alone, changes eyesight, even if the eyes themselves are fine.
Also to consider with lyme, when our eyes are said to be fine by an eye doctor, many times the EARS affect the EYES. More about that here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I do have a LLMD, Keebler. One that was recommended here when I was first wondering what was going on.
And I know this thread is 4 years old. I just did a search on vision problems, because I figured why start a new thread if there's already one out there.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
Keebler--Sorry if that last post sounded snarky, didn't mean it to. I am just sooo frustrated with everything.
Going to print off some of the info on vestibular issues for my LLMD and my eye doc to see if someone can direct me.
I've noticed in church, where they post lyrics up on a screen, if I close my right eye to see if I can focus on them at all with the left eye, sometimes the words seem to be vibrating up and down, but ONLY with my left eye.
That to me seems significant.
I also related to the one article about having to look down at the ground when you walk. I've done that all my life and never thought twice about it; everyone thought it was because I had low self-esteem (well, I do, but that's another issue). Turns out I CAN'T walk with my head up.
Lots to consider.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Starfall,
I did not read snarky into that. At times, if I do, I just try to reread it. I'm sure I write a lot that might sound snarky with the right (or wrong) inflection, especially when too tired to add the niceties. Inflection just can't come though most of the time.
Good point about just adding on. Often, I've spent a lot of time and energy combing through a post only to then see the date - when I wonder if they never came back for replies. That's the only reason I mentioned that. Good details can be found regardless of the date, of course.
"vibrating" words or lights is from what is called NYSTAGMUS. The eyes spasm. Now, this can come and go. Rest help, antioxidants help. Addressing all infection but also protecting the liver and kidneys helps. It usually gets much better with good treatment and support.
An inner ear specialist can see this much more easily than an eye doctor, actually, as the ear specialists have special googles they use.
It's not always visible just by looking in a mirror, although, I'm surprised how that is so. As in the dark, the little light on my electric toothbrush is just doing jumping jacks. But I can't see it in my eyes. The ear doctor can.
Often, that comes from the inner ear being irritated by too many toxins (whether from infections, Rx, environmental stuff, heavy metals, etc.). There are other causes, too, such as nerve inflammation but so much is wrapped in in the overall toxin load for the body.
The liver support links in the tinnitus thread may help.
The walking looking down, so as to see where you will be placing your feet, yes that certainly sounds like you are relying on your eyes rather than your inner/middle ear system to guide you.
Vinpocetine is a supplement that you might want to explore. I've been reading more about that having some protective properties for the ears but I've not worked up a post yet to add to the tinnitus thread.
Vestibular rehabilitation can be of limited help, mostly with teaching safe ways to walk, where to place your eyes, how to pay attention to your body in space and in busy environments.
However, the vestibular therapist I had was mostly useless as she was just horrified as so many of my symptoms that she just keep saying she had never seen anyone like me before. Every question I had, that's the answer she gave.
When I would have drop attacks right there, I had hope that since she saw it happen, she would know what to tell me. She asked ME what was happening then.
When I said that I had hoped she would be able to explain that to me - just still just said she had never EVER seen anyone who "displayed the kind of symptoms as I."
There was a certain dismissive tone to her voice but I think mostly she just couldn't believe what she was seeing. But, in my state, no professionals accept lyme so none get to learn what it can do.
Still, we managed to focus on a few matters of safety. She taught me to feel the bottom of my feet when I walk and to to look straight ahead as much as I could but, when that was not possible due to a busy environment, to look down in front of where I walk - but only when my visual path was obscured.
You will do far better with a vestibular therapist who is lyme literate.
Qi Gong helped a lot but, again, treating the cause takes time so it's not just about retraining. As my ear doctor said, too, you can't train a broken system. Well, for me, they seemed to know that I did have some problems with the bones in my middle ear.
Still, the ear doctor was not lyme literate and wanted me to take steroids. So, if you go to an ear specialist, a neurotologist, try to find one who is lyme literate. At least you know not to do steroids.
Body work links to come - Feldenkrais is very good, I'll pull out a section about a lyme patient's good experience with that. Other links to help in the Tinnitus thread above.
Good luck. And take care. Really GOOD care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links.
BODY WORK links are also included near the end of this thread. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet ``refused to follow orders.''
Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.
At this point, Sarah's massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.
``In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.
I knew I was walking incorrectly, but I didn't know how to correct the problem--now that I'm walking better, I have more stamina,'' she explains. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might consider adding natural Beta Carotene, Bilberry or Lutein supplements.
While NAC and Milk Thistle are good liver supporters, it is vital to add antioxidants such as those (and fish oil), too. The fish oil can help decrease inflammation but you might also consider Turmeric.
If you can handle vegetables in the nightshade family (tomatoes, peppers, eggplant) . . ..
Eating bright red tomatoes, rich orange carrots and dark berries would be good, too, as long as they are in balance with your proteins and fats. Lots of leafy greens and other greens, too, are excellent. The more color in your veggies, the better for our eyes.
IMO, everyone should have this book. It's very good.
Vision: Natural Ways to Maintain Eye Health - By Jim English
Excerpt:
. . . A number of nutrients have been extensively studied for their ability to treat a wide variety of vision-related conditions by preventing the damage caused by free radical activity and by enhancing the delivery of blood and oxygen to the retina to help repair tissues. . . .
====================================
I can't walk with any kind of eye glasses on my face - far too distracting (probably due to nystagmus). But for when I'm sitting still in a car or watching TV, my distance glasses are non-glare coated, tinted slightly blue. I can do without them most of the time, fortunately, when just moving about in my apt.
My reading glasses are also tinted blue and that helps with the dyslexia symptoms. You can get some tinting done right at your optician's. You can also get certain gels to place over the page.
There is a special lens that helps those with dyslexia - it may also help with lights - and with a variety of color choices, depending on individual choice: -------------
It's nice to see what it's like on You Tube and then purchase for your daily use with your DVD player. You Tube denies him of his rightful due for all his research and work.
The DVD is very affordable - about the cost of one supplement - it's just about $20. and you get a book with it, too. The DVD is also much easier on your eyes - from your TV at a distance. The computer screen is much harder on eyes.
LIBRARIES carry this, too. Or search Google for: Bates "eye exercises" and see if the library has the books those links suggest.
This 1 hour and 15 minute DVD plus 65 page illustrated study guide and eye chart was the surprise hit at the recent New York Yoga Expo and evidently with good reason.
Meir Schneider, PhD, LMT is well known for his pioneering work with self healing in general eyesight improvement in particular. -
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