I still haven't received adequate antibiotic treatment due to living on the west coast and being unable to find a competent LLMD out here. Taking a trip to my hometown in PA in a couple of months and I did make an appointment for that week with Dr. S, neuro-ophthalmologist LLMD, so hoping that will yield some progress.
In the meantime, have others had the eye doc say everything looked normal inside the eye AND have a normal visual field test BUT still have eye pain and gradually worsening visual field defects/blind spots?
Every time I go to the eye doc my eyes check out normal. There is DEFINITELY something going on though. It's frustrating and right now it's really scaring me.
I can't believe my LLMD here in California still thinks I just need to "detox" so that my body can heal itself. It is so obvious at this point that the infection is not under control. Cyclical night sweats are back with a vengeance lately, too.
Just looking for similar experiences. Hope everyone is having a nice Saturday, and I'm sorry for the pessimistic tone... just feeling a little overwhelmed.
Posted by Robin123 (Member # 9197) on :
Hi - I went through a similar experience, going to a neuro-opthamologist and passing all the tests, even though he had to anesthetize my eyes for me to be able to look at light.
You know the adage about being a zebra in a land of horses? We are not the medical norm, not what the textbooks are written about - we are a new medical animal for them.
Sooo, after passing the eye tests and being given a steroid rx, I knew better - I discussed it with my chiropractor and he suggested that I try drinking mangosteen juice,
which then worked beautifully for me - it stopped all Lyme eye symptoms in 24 hours - ended the eye muscle pain, the developing blurred vision, the floaters, and most of the sensitivity to light -
It's an anti-inflammatory antioxidant juice. Remember, we're dealing with a lot of inflammation, so going this treatment direction, whether with mangosteen or other antioxidants, makes sense.
There are lots of brands in healthfood stores and online - I drink the Ultra one made by Trace Mnerals with 70 minerals added. I also like Mango-Xan - a tart flavor.
I now drink about a 1/2 ounce in the am and pm. I think I started with a bit more in the beginning.
If you try it, go slowly and drink a lot of water also, as it can be powerful.
We're all different, and different remedies work for each of us. All we can do really is report on what worked or didn't work for us.
And, last comment - sometimes we're not going to get the answers we need from mainstream medicine.
Many health providers are more naturalistic in their approach, like many chiropractors, alternative healthcare physicians, etc. I got the supplement solution from my chiropractor, not the eye doctor.
Too bad - I wish the eye doctor would also embrace the knowledge of these other solutions too. But I think they listen to the drug companies.
Just saw my post number hit 5000! Yay for Lymenet and Lymenetters doing what we do here - trying to help. Many of my posts here include my discussion about being able to regain my eye health by drinking this juice on a daily basis!
Posted by lajamur (Member # 24593) on :
Thanks Robin.
My doctor is very naturally/holistically minded, actually. He has loaded me up with tons of supplements when in fact I'm now of the opinion that I need ABX!
RE: Mangosteen -- I actually bought some turmeric caps the other day and was going to try those as an antioxidant supp, so we'll see how that goes.
At this point, though, I think I need "real" drugs. I have what seems to be areas of peripheral vision LOSS or at least defect which is not something I'm willing to mess around with anymore.
I just wish someone would give me the freaking antibiotics. All I had were two months of low dose biaxin. I think it MAY have actually started to help my eye, but my doc took me off of it because he felt we weren't getting impressive enough results (too soon IMO).
Lately I have been sweating at night again, having word retrieval/pronunciation issues (minor, but still), weird fleeting sensations of pressure in my right cheek, major muscle twitching, and now the worsening eye stuff... I just can't deal with it anymore, I need someone to give me the "big guns" so to speak. Posted by mattnapa (Member # 26414) on :
Wow Robin never noticed you were going to join the 5 K club. Thanks for the info. I hope we can reference your story with eye issues on threads you may not have time to post on
. And to comment on my situation just in case it has meaning for someone. My eye thing is that I get something like wavy lines, but it will resolve if I close one eye. Also it is somewhat intermittent, usually coming for perhaps months at a time concurrent with other intermittent neurological type symptoms I know wavy lines can be a symptom for maculear degeneration, but I am thinking the fact that mine resolves with one eye closed might indicate this is different. I also have pretty good floaters
I will be trying mangosteen
Posted by Robin123 (Member # 9197) on :
lajamur - I know we're all different and that this is my experience I'm reporting on.
I watch what every tx does for me. I have been on clindamycin abx for almost five years - good for fibro and joints.
But it never affected my eyes. Only the mangosteen juice has accomplished that. So I think comprehensively - different treatments get to different symptoms in us.
Also, you mention night sweating - that can be a sign of babs.
Thx, Matt - we all work hard here - well, we play sometimes, too! We do have archived threads on mangosteen. Let us know how it goes for you. Again, when you start, drink lots of water - it flushed me out in the beginning.
Posted by savebabe (Member # 9847) on :
I had many problems with my eyes and I found bart treatment to be the most effective.
Posted by Al (Member # 9420) on :
Thanks Robin , I'll give it a try,
Lyme can also indirectly cause "Hair Follicle Mites" due to an altered immune system.
Same symptoms, They live in the eye lashes and brows.
Posted by Rumigirl (Member # 15091) on :
lajamur, you obviously DO need abx ASAP! Did you see Dr. H in CA? If he was the one saying that you need to detox and not giving you abx, not good!
When you go to PA, if you want, I could refer you to a very good LLMD opthalmologist in NY state. She would definitely say that you need abx ASAP!
mattnapa, the wavy line thing does not sound good. Please get it checked out by a very thorough LL opthalmologist (or at least a very good opthalmologist).
But as was said, regular eye drs often completely miss what we have going on---very frustrating!
Posted by Starfall (Member # 26795) on :
I have the same types of issues, and in fact right now am going through a serious flare of eye issues.
I saw I can't remember how many eye doctors before finding my LLMD, who then referred me to Dr. S.
All the eye docs said the same as yours, the eye itself is fine, we don't know what to tell you. The big disappointment for me was that Dr. S, said the same thing.
He said my eyes themselves were fine; my problem was in the pathway between the eye and the brian, and he didn't know what to do about it.
I went home in tears because I thought that's what a neuro-opthamologist would be able to treat. I felt like he was my last hope.
And I have tried several brands of mangosteen, but it does nothing at all for me.
Posted by lajamur (Member # 24593) on :
Robin -- I think it's wonderful that mangosteen worked for you!
I've taken it before and never noticed any benefits (this was before my eye problems started).
I'm not a fan of bottled juices in general, personally, because of the sugar content and the fact that so many of the nutritional "actives" simply don't survive that kind of processing.
Rumigirl, it's Dr. G I've been seeing, not Dr. H. I know of Dr. H and I was thinking of trying to get an appointment with him if Dr. G won't give me the abx next time I go in.
Thank you very much for the offer to rec a doc in NY and if I don't see some progress out here on the west coast I may very well take you up on that.
I printed out a ton of stuff about borrelia and the eye, ocular bartonellosis, etc, to bring with me to my next appointment with Dr. G.
I'm going to try to persuade him to give me doxy or mino plus biaxin or zith. I have some abx allergies so I'm a little limited in what I can take.
Starfall, I am so sorry to hear that you haven't had more success in treating your eye problems. Are you on abx? I am hoping that getting on abx will help the eye stuff. I know I need drugs that will cross the blood-brain and blood-ocular barriers.
Really sorry to hear that your visit with Dr. S wasn't more productive... I too thought neuro-oph meant they would be better equipped to deal with "brain-eye" issues.
Posted by lajamur (Member # 24593) on :
Up -- anybody else?
The eye stuff scares me.
Posted by paulieinct (Member # 17514) on :
I, too, have bigtime eye issues, mostly blurry vision that waxes and wanes with my cyclical herxes. I am seeing a LL opthalmogist in NY State (she had Lyme herself). Turns out I had dry-eye and conjunctiveitis, both common in Lyme.
The borrelia had actually colonized the surface of my eyeball and the inside of my eyelid in spite of the fact that I was on heavy-duty antibiotics. It appears borrelia can sequester on the eye surface and evade the immune system and abx.
Was rx'd abx eyedrops, 2 kinds. I can best describe eyeball herxes as like someone jabbing sharp needles into your eye. Not for the faint-of-heart.
The eyedrops eventually got rid of the eyeball infection, but it returned later so we zapped it again.
In my case, even tho my optic nerve looks OK, my vision will get very blurry when I herx making it sometimes impossible to read. I believe the problem must be in my brain.
Posted by Razzle (Member # 30398) on :
Yes, I too get the "nothing's wrong with your eyes" thing even though my vision is horribly blurry/fuzzy. It is soooo frustrating! I just got new glasses rx not too long ago, and I already feel like I need a new one! So if anyone knows of an LL ophthalmologist on the West Coast, please PM me - thanks!
Posted by DDEC2 (Member # 30313) on :
i have been having these same issues constantly since becoming ill and have worsened while on abx.
I am dealing with blurred vision, insane amount of floaters flashes of lights that are present even when my eyes are closed and light sensitivity.
I had an eye exam early this year and was told my eyes are fine. I want to see a ophthalmologist but am sure i will hit another dead end. My llmd says that its more than likely die off herxing.
I know this thread is a bit old but i was wondering if any resolved they're eye issues and how?
I tried mangosteen with very little success.
Posted by Robin123 (Member # 9197) on :
I know we're all different when it comes to what works. Drinking mangosteen juice stops all my eye symptoms. May I ask what mangosteen brand you tried and how so?
So, being that it's an anti-inflammatory supplement, maybe keep exploring supplements in that category?
And I passed my neuro-opthalmology eye exam, even though he had to anesthetize my eyes for me to be able to look at light.
Posted by Laura_W (Member # 31491) on :
I also have lots of eye issues. It was my first symptom. I pass all of the vision field tests.
I have transient blurry vision, that goes completly blurry one eye at a time for less than 30 seconds at a time.
Then I also have issues with my vision where I simply have issues with dealing with busy text. Some days reading a book or computer is easy. Others very difficult.
I have had conjuntivitis, and retinal hemorhages. I also have swelling on my optic discs.
I'm trying to get into a LL neuro-opthalmologist instead of just a normal one.
Posted by lymeinhell (Member # 4622) on :
Sharon, your eye symptoms could have been mine. And I'm happy to say that all have resolved with treatment.
When you mention the 'headache' that you feel behind your eye - is it really head pain (vs a headache?)
Dry eyes and head pain could very well be Magnesium deficiency, which is caused by Lyme. When it gets to this point, taking oral magnesium has little effect on immediate symptoms (IV or IM is what is needed).
For the pain behind the eye - you need to see if this in fact 'referred pain' from someplace else, most likely the muscles on the back of your skull (I've sooooooooooooooo been there).
Take your knuckle, and poke around the back of your skull, and search for a really sore spot (that you may not have even realized caused pain) - it may even feel like a lump or a knot. Find any of these? If so, this is a muscle spazm - which interrupts blood flow in the area, and causes pain either at the site/and or other places.
If you press really really hard on the spot, the pain behind your eye should go away. (At one point, I had about 6 of these and was pretty much in complete agony 24/7.)
It is possible to get rid of this, but they do need to be addressed - they don't go away on their own, and in fact get worse if left as they are. And then you need to address the cause of the spazms - Magnesium deficiency, brought on by Lyme disease.
Let me know if you find a knot.
Posted by lymeinhell (Member # 4622) on :
So you do suffer from what I had. You probably had trigger point injections (usually just lidocaine, but pain mgt guys like to throw in steroids which is a no no if you have lyme). At least they blissfully numb you for a bit. It takes numerous rounds to work these out - the shots are not an overnight fix. Their results are short lived. I probably did at least 6 rounds of 7-10 injections every 10 days to finally feel like a human being again.
But, if you don't treat the magnesium deficiency appropriately, this will just keep coming back. It's so frustrating because all these docs we see never think of something so basic. My guess would be you'd need IV mag sulfate or chloride, which is really no biggie - 20 minutes, read a magazine - for me it was life changing.
Depending on where the knot is, the pain can go anyplace. Through your jaw, your ear, down your neck into your arm. (In fact, I had such neck issues they gave me a cervical epidural, blaming a slightly herniated disc that I'd had for 15 yrs with no symptoms on all of my head pain.)
Heavy pain meds don't touch this type of pain. It's muscle pain so fix the muscles. Give them what they need. Since you have absorption issues already (again something we have in common), you might try Topical Magnesium Oil, which you absorb through the skin (www.ancient-minerals.com/Mag-Oil). Spray it on thin skinned areas or areas that have the knots, along with taking B vitamins and D3. Epsom salt baths are also helpful, as its magnesium. Warm water only, not hot, 2 cups epsom salt, 1 cup baking soda, no more than 20 minutes.
Another EXTREMELY helpful tool is a rebounder (mini-trampoline). Just slight bouncing and punching and I was able to relieve the mystery muscle pain in my upper right arm in a just a few minutes. The benefits of a rebounder are endless, but are truly life changing for someone with your type of issues.
Hoping you can get to a real LLMD so you don't get stuck with the fibro label - there's treatment for Lyme.
![[Frown]](frown.gif)