Topic: Iritis anyone? Need input please. Losing vision
Pocono Lyme
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posted
I've been having vision difficulties since lymed, have seen an optometrist frequently over the years and of course nothing was found.
I saw an ophthalmologist nearly 3 weeks ago and was diagnosed with bilateral iritis, with lyme as the culprit as other causes have already been ruled out. Not an ILADS ophthalmologist.
I did steroid drops with resolution of iritis as of this past Monday. Yesterday a.m. woke up with severe eye pain, bloodshot eyes and extreme light sensitivity.
This a.m. woke up to excruciating eye pain, my husband drove home from out of state to take me to the eye doc.
Iritis in left eye only but worse. Back on drops. Will be reevaluated on Monday. I know this is only treating the symptoms and not the underlying cause. Have been off treatment for more than six months. I declined herbs.
I have an appt. with a new LLMD but not for more than a month. I am on the cancellation list as of this afternoon. My PCP may intervene until then, but wouldn't necessarily know which direction to take.
Anyone diagnosed with Iritis and what meds. were effective.?
thanks for any help.
-------------------- 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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timaca
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Pocono Lyme~ Hi! Long time no correspond!!
Listen, have you been tested for CMV? I think it can cause retinitis too! If you google "CMV retinitis" you'll see what I mean.
By the way, I've been diagnosed with chronic viral infections. Go to www.hhv-6foundation.org. Click on "patients" and read posts by "Timaca"
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
so sorry to read this!
also go to directory at top, click it, and then go to line where you type in a name
type ICESKATER, press enter, and then send ICESKATER A PRIVATE MESSAGE.
she's been thru severe things for 1.5 - 2 years; get her perspective as she's been to many drs. now.
have you seen eye specialist, Dr. Singman in Penn? he's extremely knowledgeable!!
i'll send you pm w/details. good luck
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Pocono Lyme
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Hey Timaca my old time Rocephin Buddy! How ARE you? No I haven't been tested for CMV but will check out the info..
Do you do antivirals then? I don't mean to ask the questions on here but my eyes are paining and blurry. Difficult to do research right now.
I'm going to contact my PCP on Monday. I think he'll go along with it. He's been a rock for me Thank God. I believe he will put me on lyme treatment until I see my new LLMD if I ask.
Betty G Thank You. I received your pm. I had/have been in touch with iceskater, that sweetheart. She definitely understands.
Thanks to both of you. Wondering what antibiotics penetrate the eye for lyme.
-------------------- 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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lymednva
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Jellybelly has used abx drops in her eyes. Here's a link to her post about it:
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Pocono Lyme
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Thanks lymedva
This may be an option until I get to my new LLMD. Can't come soon enough though.
I'm shutting down for tonight as both eyes are totally bloodshot and the one is paining terribly with light exposure.
You guys are the best!
-------------------- 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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sizzled
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There is a very good LL eye doctor in your state!
Perhaps you have seen him already??
Posts: 4258 | From over there | Registered: Jul 2001
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They also have a list of specialists listed though you may need to travel if all else fails.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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timaca
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posted
Have no idea whether this will help you, but I'm saving my eyes by drinking mangosteen juice. It stopped eye muscle pain, blurred vision and light sensitivity in 24 hours. I drink the Ultra brand with 70 minerals added, but there are also lots of brands out there. If you do it, drink a lot of water with it too. And let us know if it helps, if you decide to try it.
Posts: 13116 | From San Francisco | Registered: May 2006
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Pocono Lyme
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Thanks all. The pain is gone this a.m. thank God, but the vision is really blurry. Whites of eyes (sclera) is visible again. Not completely cleared but much better.
I haven't seen the LL ophthalmologist in PA sizzled, but may have to. Thanks. Betty sent me the contact info..
Thanks Mamawolf for the link. It IS scarey. I just picked out glasses on Monday and am wondering if they're going to be OK as my vision is worse to me than it was a week ago.
I haven't read the site yet but what I have read somewhere was the underlying cause must be treated.
Thanks Timaca. I hope you are making great progress. You sure have jumped hurdles and gone through hoops to get well. Robin, I did try Xango a while ago and for some reason got a wicked headache within minutes. I usually don't get headaches. I was on antibiotics then and heavy so maybe yeast was a factor.
Thanks for the replies and PMs all.
-------------------- 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
Pocono, I believe Xango is the strongest mangosteen juice version, but I too get a headache and am wondering whether it's a herx symptom.
I can handle the Ultra just fine and always could.
Posts: 13116 | From San Francisco | Registered: May 2006
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tailz
Unregistered
posted
My eye doctor found something in my one eye, but he wasn't concerned, and I forget what he found.
Eye pain has been an ongoing problem with me. I also have trouble with bloodshot eyes and sometimes green or yellow eye goo. I also have to cover my eyes with my hands when I'm outside.
It's horrible driving because I've had to wear my glasses instead of my contact lenses, and therefore, cannot wear sunglasses.
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Pocono Lyme
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Bea,
I believe it may be Bartonella also. This is part of my frustration as the treatment I was on was helping the worst of my symptoms(neurological) when my treatment was halted.
I had done Cipro a couple of years ago and it did seem to be hitting something as it sure did hit me hard. I was only on it for ten weeks though. I had quite a bit of relief in two months with the Rif. combo.
Levaquin didn't seem to have an effect on me.
Rifampin combo definitely helped and I wish I could've stayed on it. I'm going to ask my PCP Monday if he'll approve it until I get to the LLMD. The steroids are pretty much a bandaid approach and then the bandaid gets infected. I know they're necessary, but getting at the root of the problem is vital.
Thanks Bea and I sincerely hope answers will be found for Steve soon. Keep up the fight like we all have to. We're gonna win eventually.
Robin, I wondered about the herx thing too. Thanks
-------------------- 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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Pocono Lyme
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Tailz,
Have you tried a different eye doc? I stayed with the same one for the past five years. He didn't find much of anything.
My first visit to the ophthalmologist revealed the Iritis. I'm finding the longer I go on, get second and third opinions.
The second ENT I saw retrieved the CT report of my sinuses from two years earlier. I was told it was negative. The second ENT told me "by no means was it negative, you had one he//uva serious infection going on.
I needed surgery, but then had to hold off until the lyme was better controlled.
Maybe you're dealing with Bart too as it causes conjunctivitis which is what you are describing with the discharge. Maybe a culture would be of help. I feel for ya' pal.
Mamawolf and Timaca, I checked out your links today. Iritis.org is a wealth of info. I was also put on drops to dilate, so according to that site, anticipation of adhesions is the reason for ordering them. Timaca, The antivirals don't sound like much fun to go through either. Sounds a lot like lyme herxing. I hope it turns out to be worth it for you friend.
-------------------- 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
Pocono-sorry to hear that you're going throught his!
I had the same experiences years ago. I thinkk that a heavy dose of shrimp and garlic sauce triggered it. My opthamologist was called out of church as an emergency and gave me a cortisone shot in my eye. It resolved very quickly. The predforte eye drops will also help if you use them every hour. The drops can also raise your eye pressure.
I hope you can get this resolved as quickly as possible! Don't let it get out of control because it can cause permanent damage.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Pocono Lyme
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Thanks Sunnymalibu. I was given the PredForte drops to use twice daily when diagnosed with mild iritis three weeks ago.
On my followup two weeks later, the pressure Was up in my eyes and I was to continue the drops only once a day for the third week.
During the third week, was when I had the severe flare of Severe Iritis of the left eye. Now on a dilating drop twice a day plus the PredForte every fifteen minutes to start then every two hours until reevaluated tomorrow.
Were you on antibiotics at the time? And yes I'm definitely worried about permanent damage. I think there may already be some as I need glasses now with power for distance and closeup. Thanks for your reply.
-------------------- 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
Pocono-it sounds like you had the flare up when you reduced the drops to once per day. That may be what caused the flare up. day.
I was not on antibiotics at the time because I had no diagnosis at the time. I was subsequently diagnosed with sarcoidosis but recently had a positive Igenex test.
The shot in the eye get the cortisone to the back of the eye. The drops only reach the front of the eye. The other alternative is to take systemic steroids which would be my last resort.
I would try to get a shot in your eye. This gets the cortisone to the back of the eye and it stays back there and is slowly abosrbed. You need a doctor who has given the shots many times before because if not done correctly it can cause problems.
One of the best doctors in the world is C. Stephen Foster. He has done several surgeries on my eyes and given me several cortisone shots. I used to travel from N.J. to see him and have traveled from Calif. to Boston to see him. I don't know how far you are from him but he is worth the travel. His web site is http://www.uveitis.org/contact.html. He has been listed as one of America's Best Doctors.
The hourly drops should keep the iritis at bay but I would try to get a shot. You also need to address the pressure increase. Your doctor can give you drops while you're using the predforte drops and/or check the pressure after the shot.
I wish you a speedy recovery. Please let me know if I can help you in any way. I've had 23 eye surgeries and "have been around the block" with eye problems.
Best wishes!!!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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CaliforniaLyme
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Pocono, I wrote you back regular email. Yup, local guy has had normal vision again for years after 400 mg of Doxycycline a day for 3 years or so. His Lyme induced uveitis went away within first 3-4 months and it had been vision threatening so it was a real relief. Take care, Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Pocono Lyme
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Sunny,
Wow you've been through a lot. I'm kind of expecting to get the old needle in the eye trick tomorrow.
I did read about Dr. Foster on iritis.org after Mamawolf posted. He sounds great.
I hope after all you've been through, your vision is excellent. You should be able to see for miles and through walls after all of that.
Thanks for your help and support. It is so appreciated.
And California, thank you as I think my PCP will back me on that until I get to my new LLMD. I wonder if Minocycline would be OK as I couldn't tolerate the Doxy I had been on Mino for a year when it was stopped in May. It is such a relief to know his vision came back.
Thanks everyone. You guys are great.
-------------------- 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
Pocono-thank you so much for all of your kind words! They are very much appreciated!
People can't imagine the fear that loss of vision brings into one's life. I think it's so inconceivable that it's very difficult to really try to imagine the fear.
Please keep us posted!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Jellybelly
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Hi Pocono! So sorry to hear things aren't getting any better. My eyes are flairing at the moment too.
Did you see my post on the NEW Azythromycin eye ointment? It is out there now and it is for humans!!! No need to try the animal stuff. My eye doc just let me know about it 3 weeks or so. That could be a huge step in the jright direction for people like you and me.
Posts: 1251 | From california | Registered: Apr 2005
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Pocono Lyme
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Sunny, You're welcome.
Everyone has been so helpful. Yeah the vision stuff is really scarey.
Had my follow-up with the ophthalmologist. No needle in the eye, for now anyways. Inflammation resolved. I'm down to PredForte 4x/day x 1 week then 3x/day etc.. The dilating drops were discontinued.
The pressure in my right eye remained elevated, but she said it usually takes about ten days for the pressure to go down following the drops and it's only been 5 days for that eye. The left eye pressure went up significantly but not yet dangerously high.
Then got a call from optometrist, glasses came in. Won't be able to see properly with the glasses for about 5 days due to the discontinued drops. Never smooth sailing.
Hey Jelly. Boy the dog/goat/cow ointment looks promising though. Especially since it lists that it's effective against spirochetes and much more. Too chicken to mess with the eyes. Are you using the Zith eye ointment and does it help?
Neither the ophthalmologist nor the optometrist had any interest in treating other than with the steroid band aid, though necessary.
May do nonsteroidal drops when finished with the PredForte. I hope, as to not be messing with the pressure.
Thanks everyone for your help and support. I've been really afraid and upset. You're there as always. And so comforting.
Oh BTW California Lyme. I Like your name too.
-------------------- 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
Pocono-I'm so glad that your inflammation has resolved. Can you think of anything that may have triggered it? I hope that it never happens again and you can get on with your recovery!
It soujnds like you've had a very bad time with this as far as being bedbound. I'm glad that you have progressed to being able to drive and wish you continued progress and a full recovery!
You mentioned non-steroidal drops. Did a doctor give you those? Do they work? I haven't heard of those. I'm seeing a cornea doctor today and will ask him about the azith drops. Thanks and best wishes!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Pocono Lyme
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Hey Sunny Honey
I didn't get the nonsteroidal drops, she mentioned that we may go that route following the PredForte so as to avoid the pressure issues.
They're not as strong, but can be effective. I didn't get the name of the drops darn.
Yep this has been a nightmare for me. Undiagnosed for nearly three years. Bedbound for 18 months with severe cognitive issues, couldn't turn some faucets as I couldn't remember which direction to turn it, didn't remember to eat, couldn't carry on much of a conversation, needed help getting dressed as I fatigued with the thought of it and would get confused.
I remember sitting trying to figure out which sock went on which foot. hmmm.
And 24/7 dizziness, vision loss, hearing loss, severe balance issues and the list is pretty long. Depersonalization and Derealization also were awful.
I am far from remission, but still chipping away at symptoms. I am so happy to be able to drive again. I can't go far or for long, but sure beats being in bed all the time.
Good luck at your appt. today. I'm sorry. I wish I would've gotten the name of the drops.
The eye doctor told me to watch for when I have a flare of lyme symptoms as the iritis flare may follow within a few days to a week. The iritis is a symptom of a systemic issue.
I never feel well so tough to tell. good luck friend.
-------------------- 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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CaliforniaLyme
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Hey Pocono*)!*))!
AT lEAST you KNEW that socks went on FEET!!!!!!!!! That's pretty good*)*)!*)!*!!!!!!
Sincerely, Sarah who spent quite some time wondering what things like socks were FOR at a certain point in her life!*)!)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lyme in Putnam
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Hi. I'm sorry to hear about the iritis condition. My son, who is 12 now was diagnosed with iritis about 2 years ago. He had no pain, but due to his irregular bloods and was on zithromax for lyme, Dr. J. suggested I take him to an opthomologist. I'm glad he did. He had a few floating cells in one eye. She gave me steroid drops for about 2 weeks. I had to go every 3 weeks to see if all was clear. He's been off the drops for some time now, and I take him every 3 mos. to see if any cells have come back. The coast has been clear so far, but he just went back on zithromax for symptoms. The symptoms have subsided since hes on zithro, and the iritis hasn't come back yet. Have to keep on top of this for him. Lyme has been the culprit of this for him. Hope you're doing better and the steroid drops did it for him. Hope it clears for you,
Be well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Pocono Lyme
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Yep I know what you mean California.
Then there was the knife and fork thing to cut up food was Definitely out of the question.
Thanks Lyme in Putnam. I'm glad your son didn't have the pain. My first visit revealed a few cells floating, started the drops, it resolved in two weeks, was weaning the drops when I had the severe flare.
That's when the pain came in. Ice pick through the eyebrow to the back of the eye, my sclera totally red and unable to open either eye due to pain with light. Lots of cells this time.
Official diagnosis: Recurrent Iridocyclitis suspect lyme
It's feeling much better now thanks. I'm glad your son's resolved. The drops raise my eye pressure quickly (not good) and with extended use could cause cataracts. We just can't win with these diseases.
Thanks all for your support. Definitely frightening.
-------------------- 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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