Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Have not been here in awhile.....I hope to hear from a few of you that have had long term Lyme and what effects it may of had on your eyes.
My skin rash went to my eyes in the beginning as some of you know, almost taking my sight.
Floaters and such have been in the way for many years now, the problems went away after one treatment but returned several years later.
Now, I have had two bouts in the last month.
Horrible eye pain, tearing, eyes very red. it's not pink eye, they are testing tomorrow for Glacoma (not spelled right.
Thing is last year i had a test like this. I see what looks like black worms and lots of floaters. sometimes its like the worm breaks into pieces and all I see is black dot's.
I can draw on a piece of paper what they look like. Doctors last year had no clue.
Of course I suspect they are the the Spirochete's.
Doctor I saw the other day during an episode said it was extreme inflamation and asked if I knew of any inflamation in my body. Of course I had to advise him of my Lyme.
He put me on 200 mils a day of Doxy which I am surprised i can tolerate this time. first time I couldn't take 50 mils a day. However that is when I was first DX with Lyme and I was very very ill.
Have any of you dealt with the eye problems of Lyme and can you share with me what has happened and what if anything has helped.
It's been 5 years going on 6 (good grief where does time go) when I first logged on here and I hope some of who helped then are still around and of course I'll always be happy to meet the ones.
Thanks a bunch!
Posts: 1092 | From CA | Registered: Sep 2002
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Yes. I noticed that I had trouble focusing on small print & details. My vision gets kind of blurry at times - especially at close range to read small print. I'm not sure if it's a symptom of ageing or Lyme. I always had excellent eye sight. So, I started taking a supplement called Lutein. There are also physical exercises you can do with the eye to support vision.
I noticed when I started taking Cumanda (Cowden protocol) that I felt kind of sandy or gritty feelings in the back of my eye. It seems that the Cumanda may have been effective in killing some spirochetes but I can't be absolutely positive. I'm trying to continue with the Cumanda but it's very strong & I have to go slowly.
My symptoms in my eye are not extremely severe at this time but I don't want them to get worse.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Hi Kathy, I remember when I first went to my duck years ago with a swollen bloodshot eye, off balance, and with ear pain.
I was asked if I was taking any "recreational drugs" I told her to kiss my azz, which did'nt help my case any.
I have had floaters and wigglies along with sparks.
Since treatment they have diminished considerably.
My doc told me I have a slight increase in pressure on my right eye, but that was prior to treatment. I wish you the best! Ken
-------------------- "We can easily forgive a child whom is frightened of the dark: the real tragedy is when men are afraid of the light." Plato Posts: 37 | From OuterBanks NC | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I remember you!!!
Nice to see you again Kathy.. sorry to hear of your eye problems.
Yes.. sounds like it could be a lot of inflammation causing some of your problems.
Look up "mutton fat". That is the term used to describe "blobs" of inflammation that floats around in the eye ball fluid. It may be the dark spots you see?
Docs usually use steroid drops in the eyes to help.. but I take the following instead which worked better than steroids (according to my eye doc).
1 Wobenzyme per day 1 Querectin per day 1 Vitamin E per day, 400 iu 1 Bromelain per day
I am suppose to take Vitamin C also with that combo.... but that doesn't agree with me.
This simple combination has not only cleared up my eyes but reduced inflammation in the rest of my body. VERY noticable improvement.
All can be bought over the counter or online. Wobenzyme is the most expensive of the bunch and a bit harder to find.. but they do sell it online.
By the way... I am NOT a doctor and I am NOT saying what to take.. just letting you know what I take to give you ideas to run past your doctor.
Also check out dry eyes.. as the tearing may indicate a problem in that regard... and LOTS of Lyme patients have VERY dry eyes.
For that I use Bion tears.. a simple eye drop with no preseratives.. which I get over the counter in a drug store. They have some oily ones that are suppose to be even better... but when I use them it looks like I am looking through a blob of mayonaise when I see things.
Have you been tested/treated for any of the coinfections? Some of them are known to cause eye problems. Bartonella is one of the problem infections we see a lot of these days.
I'd chat more.. but I'm tired and need to head to bed.... or off with my head!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I forgot to mention.. that combo above is the lowest dose. I was told to take more but since I am so sensitive.. I don't need to and it makes me feel worse rather than better.
It is also cheaper to do lower dose... which suits me fine and dandy.
You can take the recommended doses of each product.. according to my doctor... if that is too low a dose for you. IF your doctor approves it, of course.
my floaters turned out to be EARLY diabetees RETINOPATHY; I'm beginning to go BLIND.
so you might check that out too! got to get my diabetees under better control to keep this at present level and NOT GET WORSE!
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tailz
Unregistered
posted
I see the same things in my field of vision. Whatever it is, it looks like a dot with something inside the dot. Or it looks like a dot with one or more threadlike 'tails' floating over my eyes. I am most likely to notice them days when I'm feeling especially ill.
I also have very red eyes and greenish-yellow eye goo. Sometimes the undersides of my eyelids burn, too.
My eye doctor did see something when he did took some sort of picture of my eye before I knew this was Lyme, but like with everything else, unless you are growing tumors or going blind, "it's probably nothing".
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posted
Kathy - I have been able to successfully treat my eye symptoms. Floaters, light sensitivity, eye muscle pain and blurred focus all cleared up within 24 hours of drinking mangosteen juice, an anti-inflammatory juice.
I drink the Ultra mangosteeen brand with 70 minerals added. There are lots of mangosteen juice brands in healthfood stores and online. Xango is the strongest - sold multi-level. Some folks drink that one, but it gives me a headache.
If you try the juice, drink a lot of water with it, and go slow, as it can be powerful.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I see floaters and what I believe to be spirochetes as I too could draw them on paper and they look exactly like pixs I have seen. I have even seen cyst forms. I thought I was crazy before others confirmed they too see these.
In Wikepedia on Lyme it stated an OLD!!! govt study that even after "succesful treatments" of Lyme even with arsenic, chetes still found in brain and in EYES!!!! (my spin to make it simple and layman) Look it up on Wikepedia!!!
I see these in certain sunlight only, I cannot see inside only outside when the light is just right. Cloudy days, cant see them.
When first under treatment they increased in volume. I counted 8 one day and 2 cyst forms and it really freaked me out. As I have gotten to about 80% they seem to be less in volume. Now I only see 1 or 2 and an occasional cyst form. To me that is PROGRESS!!!!
It is also a key factor for MYSELF knowing that I am not "c#@!^d"!!! If I can still see these then it is still active inside my body. Period. End of story. And NO ONE could convince me otherwise.
When I hear those words, I just shake my head. If I question my own sanity, as we all know ducks like to do that to us - and others - place that reasonable doubt - I simply go outside and check!
Still there!?!?! YEP!
YOU all are the crazy ones - NOT ME!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Thanks everyone!
Hi Tincup, thanks or stop by
Have any of you tried penicillin shot's?
I'm asking because some of the data I have read lately it appears that it works with certain bacteria's that you could have received during the transmission of the bite.
I'm trying to look back at what worked so well after an out of the box treatment I took and one thing that happen is I got a really bad staff infection in one arm where I received IV's on the day I was to fly home.
Since it was an all day ordeal with 8 hours of flying the hospital gave me a double shot of penicillian.
I felt great to start with comapred to how I went in, but I felt even better after the shot. I never put 2 and 2 together before now.
Now in CA instead of TX and far away from the pathologist I was seeing at the time, I have had to start over.
Long periods I can thankfull for that I have not needed a Lyme doc. My GP is understanding and when I have my bouts she helps with what she can.
I tried Hyperbaric Oxygen treatments a year ago when I stared getting very tired. 14 of them. I couldn't see a huge difference though.
Here in San Diego you can get them for $100 a dive.
This rash seems to be turning brwon again with the Doxy. It would be a miracle if it would continue to do so. Several things that we have tried effect it but never completly clears it. except for one treatment that was heat treatment.
It turned brown all over and flat went away in a matter of days. However, that deal is no longer available. Period. So, I'm hoping someone else that has experianced the rash can stop by too.
I have also read where the eye is an extension of the skin. So I can imagine the rash all over me has to effect the eyes at some point in time.
I think I am experiancing the long term effects of Lyme.
Kidneys banging when I lay down at night. can't sleep more than 2 hours without waking up and peeing. Veins on ankles now swell and itch and one in my wrist as well. Gallblader killing me. Liver enzymes up on the last blood test.
Although all this seems better now that I am on the doxy.
I hate the fact I have to start all over, I have done so well for years.
The eye duck I'm seeing at the moment is old school. His first response was he knows of Lyme and 200 mils should take care of it. At least he knows of it and I got the Doxy.
I have heard Dr. S in San Francisco is no longer accepting patients, does anyone know?
I also hate the fact I'm going to have to shovel out loads of money again to treat myself.
I do have insurance but it still seems like out of the box things is what works and not perscriptions.
I have had all the diabetes test run, all the surface blood test they always do and nothing found except Liver enzymes up on this last one.
Oh, this eye doc ordered and IgG & IgM last week. I don't have much faith in it but he seems to think it will give us answers.
What is everyone going with now for blood test?
Posts: 1092 | From CA | Registered: Sep 2002
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In two seperate threads you've mentioned that you have early DM retinopathy. What makes you think that this is the beginning of going blind? Statistically, the vast majority of people with any level of retinopathy DO NOT go blind.
Have you been told by an eye doctor that you're going blind?
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Hi TuTu !!!!!!!!!!!
So good to hear from you
Well, my doc visit turned out ok. he's letting me stay on the doxy.
He's not happy about my rash, my eyes he said showed no nerve damage and didn't even go into the glacoma thing.
He called a doc friend of his who is the Infectious disease head of the board for ID and resident doc for scripps in San diego.
Not that I have had any luck with this type of doc in the past but I'm hoping he may have some test i have not been thru or even better yet have knowledge of Lyme.
I am glad to see that the inflamation is exactly that. It's so scary dealing with your eyes. I'm sure it has something to do with Lyme or the damage left from the Lyme.
Either way I'm glad you guy's are still around.
Thanks for all the private messages as well. A few I need to call.
Thank you all so much!
Posts: 1092 | From CA | Registered: Sep 2002
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posted
my husbands was dx with glaucoma 6 yrs ago..his pressure was 24, witch is extremely high..well after getting a pos for lyme 16 mts ago and on abx for that time his last Eye Dr visit the pressure has droped to 12 witch is normal...he asked could the lyme be causing the pressure and not glaucoma..of course she said no....seems to me with having had head and eye pain for 6 yrs back when he was bit it not glaucoma..but i'm not the DR
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
I saw someone said something about blurriness in the eyes. I wanted to say that when I went to my Eye doctor last year (shortly after diagnosis) because of bluriness (and floaters). My blurriness wasn't all the time, but popped up occasionally. It would last seconds up to hours.
My Eye doctor said she did not know a whole lot about Lyme (of course), but since she didn't see anything physically wrong with my eye that what she thought was happening that Lyme gives you inflammation in other parts of your body why not the eye too since all the eye is really is a muscle.
She asked me if the blurriness went away when I was on Celebrex (before diagnosis). I hadn't thought about it at the time, but indeed it had. I went back one month later just to make sure that my eyes weren't deteriorating more than the standard deterioration and they weren't.
So I had my new glasses ordered and As my treatment has gone on, the blurriness has decreased. On my worst days, my eyes are the worst. I get more floaters and increased blurriness. Those are often the days that my joints and muscles ache too.
Posts: 18 | From NC | Registered: May 2007
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Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
How long did you take the celebrexa and in what dosgae?
Posts: 1092 | From CA | Registered: Sep 2002
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posted
OK The 21st of Feb I go see a Neuro Opthamologist. I had to set an appt up with the Opthamologist part first but since she is a Neuro it hopefully will kill two birds with one stone. (Hate to use that phrase) My eyes are very gritty, however; my left eyeball at times gets real red (flag red) and sometimes actually the eyeball swells. I have taken pictures to show this Doctor whom I was referred to by someone on this web. Many systemic diseases manifest through the eyes. When I lay down they will also turn red. Vasculitis? I don't know if anyone out there eyeball actually swells but it surely doesn't make my day. Hopefully something will get resolved other than "here are some eye drops and see you in a month." Pressure in the eye for glucoma seems fine but something is irritating them. Two optho's totally clueless. When I mentioned to one lyme, he said he wasn't familiar and told me I should go see Steere who has an office accross the river. I wonder does Steere puts the glove on when he checks you out? He may want to give me a second opinion and I am not sure I'm ready to switch teams. Anyway anyone had this problem?
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Holy Oldie!!!! Kathy Boss!
Well I am NOT glad you are back with symptoms vs just saying hello.
As for the spirochetes, NO...your eyes are not microscopes...the bacteria are too small to see with your eyes.
Rather than spend unnecessary $$$ on remedies that might of might not work, running repeat tests sounds like the smart way to go.
Not a hell of a lot has changed...except ICHT is no longer a topic!
I too have floaters and black dust-like stuff. many people without Lyme have these as well.
I forgot...were you tested for co-infections?
We now know that viruses can also be a part of the Lyme equation, check out the post by Timaca...she is part of a study at Stanford, run by Dr. Montoya, who is using IgG titers to treat viral infections with Valcyte (NOT VALTREX).
Sorry for your symptoms...I am sure they will go away...they do for me.
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
Could you please explain what you mean by your rash going to your eyes?
Recently, this weird painful finger rash reappeared, and very soon after the vision in my right eye started rapidly going. My right eye is now constantly blurry and I'm afraid of losing my sight. I see halos around lights as well. I am trying to get an opthalmologist but it's really complicated as I'm homebound and have severe MCS.
I'm in treatment for Lyme and bart right now.
The vision loss has been going on for a couple of weeks now, and it is really scaring me.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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bettyg
Unregistered
posted
eye bob,
i didn't get back to this for 2 wks; sorry i missed your note above.
the eye specialist gave me written literature which stated this, and she also stated this, that i had early diabetes retinopathy.
i asked her if this meant also i'm beginning to go blind? YES.
BUT she said too if I get my diabetes under control and A1C's down to 6.0 or near there; I have a good chance of maintaining my present eyesight as is.
now since you were an eye dr., what does it mean to YOU? did you diagnose any patients with this? thanks for asking!
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