posted
So my retina specialist who's treating my uveitis told me that the steroid drops I've been taking every 2 hours for the past few months are not sufficiently controlling the inflammation.
and she's probably going to have to do injections in my eyes on Monday.
I am extremely phobic/terrified beyond description by the idea of my eyes being touched much less being jabbed with NEEDLES.
Has anyone else had to do this for eye inflammation and can tell me what it's like?
It can't be as bad as I think, right? and I can't be the first person to be freaked out by it, right?
I would like to be put under but I don't think she's gonna go for that, especially if it has to be done repeatedly.
Does anyone have any advice for me about how to handle this or what kind of sedative I could ask them to give me or ANYTHING?
If the choice is this or blindness, I guess I have to do it.
but I'm totally freaking out
and I'm afraid that I'm going to completely flip out and flinch or flail or involuntarily smack her hand away and cause her to damage my eye.
Please help! ANY kind of input or advice would be GREATLY appreciated!
Posts: 17 | From Princeton, NJ | Registered: Jul 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Swavle - Oh gosh, steriod drops in the eyes?! And you have Lyme?! Are you on abx tx for Lyme? If so, for how long?
I don't know what the plan is for injections, but if it's steroid based, you won't find any help there; not with a case of Lyme.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
I don't have definitive proof that I have Lyme disease but I was diagnosed with Lyme when I was 12 and treated for it again (with 11 months of antibiotics) 5 years ago after many years of unexplained health problems and eventually a chronic fatigue diagnosis.
Blood tests do not seem to support a Lyme diagnosis.
I've been tested at 4 different labs (including Igenex) in the past 3 months all of which show a high Lyme titer (which I assume is the Elisa) and a negative Western Blot.
The Western blot doesn't even show antibodies to any of my previous Lyme infection(s) but we all know how useless the Western blot is.
Now I've been diagnosed with uveitis (which is deeply frightening) and have fatigue, pain, extreme brain fog and a myriad of other symptoms that have persisted for years (my health really hasn't been good since my first Lyme diagnosis at age 12).
So, I strongly suspect Lyme (and I fear for my sight if it's not properly treated) but all of my doctors say Lyme isn't causing the uveitis because my Western blot is always negative
and they ignore me completely (or look at my like I'm nuts) when I say that I've read that the longer you've had Lyme, the less likely you are to test positive.
The LLMD I saw also said that he didn't think I had Lyme but then when my Elisa came back high two more times, he said he'd phone in a 4 week course of doxycycline (200mg/day), wait a month after it was finished and test me again.
When I saw him in his office a week later, he didn't seem to remember that conversation and asked "didn't I give you refills?"
I want to get treatment so I didn't mention that he had previously said he would only give me 4 weeks of antibiotics.
So, he gave me 3 more months of refills and told me to come back in 3 months.
I don't know what to think of him. He's not very communicative and dodged my question about whether 200mg of doxy is enough to breach the blood-brain barrier and actually reach my eyes.
I asked my ophthalmologist about antibiotic eye drops and she said she'd never heard of such a thing but she would look into it (she also doesn't seem to believe I have Lyme).
So no one believes I have Lyme except me (even though they've ruled out every other possible cause of the uveitis) and now they're going to start sticking needles in my eyes (yes, steroid-based injections) which probably won't even work anyway.
And I don't know what to do and I feel like no one is ever going to help me.
Posts: 17 | From Princeton, NJ | Registered: Jul 2009
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Having my eyes poked and prodded is pretty much my worst nightmare.
I have a synthetic valium for my anxiety problems so I can take that but I feel like that's not gonna be sufficient to prevent me from having a complete and total conniption.
And if everybody out there thinks that I shouldn't be getting steroid injections or drops (which I am currently doing every hour) if I suspect Lyme, then what should I do?
Posts: 17 | From Princeton, NJ | Registered: Jul 2009
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posted
That sounds so horrible, had to respond although herxing badly so forgive errors.
Positive Igenex for lyme and babs in april. Had appointment LLMD end July who ran tests.
My Chronic fatigue doc helped me out with 500mg of doxy and then both cfs and physc doc gave me perscriptions for biaxin 700mg. So that filled the time between finding llmd and appointment.
Don't know excactly when but within the last month or so had what I thought was eye infection. ER 6am gave me antibiotics, back to er 10pm the following day. I could not open my left eye and even though i kept it closed the light from my right eye was causing tremendous pain in left eye.
eyes started tearing like mad so went back to er and they froze my left eye and wow within 10 min i could open both eyes no pain.
This is maybe what they will do for you.
Given steroid drops every hour saw opthamalogist next day and confirmed ilitis, finished steroids about 10 days ago but weekend thought it was coming back so steroid drops three times a day for ten days.
I read Ilitis is an auto-immune mmmhh to me auto-immune means that there is something there that they can not find = lyme disease!
I have never had any eye problems before so I am thinking that the lyme was/is in my eyes and with treatment of antibiotics the eyes are reacting to hopefully the killing of borelia. Maybe the same thing is happening to your eyes.
I am now terrified of ilitis so I know how you feel. I am thinking that as they froze my eye so quickly and easily in er they must have a really good way of injection.
The only good thing I can see in all this is the fact that something is going on in your eye and the chances are pretty good that it is lyme.
I told the opthamologist I was being treated fo lyme and she wrote a note to my llmd stating to check for the following: Lyme, Seronegative arthritis, Sarcidosis, Syphilis, TB and Crohn's/UC.
This stunned me, regular opthamologist, regular hospital and she was willing to write lyme as a possible cause.
I agree steroids are bad but not when you may loose your vision.
I wish you all the very best, maybe thier is more information on the net re injections.
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
kitty9309: Would you mind posting what treatment they offered you. Just wanting to make sure I am doing it right.
Swalv: Hope you have had some helpful information.
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You only got 2 of these. I think I would get a second opinion with a LLOP.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Steroids are sometimes indicated in lyme disease. However, I would be worried about doing this unopposed by antibiotics.
A search of the national library of medicine using the terms lyme disease and uveitis brought up 95 articles.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
wow, I am currently being treated for lyme by an excellent llmd. (long term abx)
I have had chronic uvitis for the last ten years ever since my first bout with lyme. Spent the first 8 years thinking it was several of the usual misdiagnosis.
My question is a special arthritis opto told me that my uvitis was a from the arthritis.
she tried many different drops, nothing helped.
she told me that I would loose my sight if I did not find something that worked.
Restasis seems to help but my eye remain inflamed.
should I wait to see if the abx treatment helps or should I go to llop. I do not want to loose sight.
only been on treatment for 4 months.
Posts: 6 | From arcadia, ok | Registered: Sep 2009
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have uveitis, and a Lyme-literate Opthalmologist.
I still had to use steroid drops 3 times daily until I found Benfotiamine, a lipidized form of vitamin B1 that works just as well. I take 150 mgs. daily.
It normally takes 12 wks. to work, but worked for me in just 3 weeks.... I had taken the drops for over a year and was able to stop.
If you hold your finger over your tear duct for two minutes when putting in the drops, they cannot go systemic like steroid shots or pills.
It is dirt cheap at www.vitacost.com. $11.77 for a 4 month supply. There is a research study from the Univ. of Texas on Benfotiamine you can look up on line, print out and take to your eye doctor.
However, if drops aren't working, shots are sometimes needed, and I understand they numb the eye first and inject at the side of the eye, though I've not had it done myself.
You might want to PM Marnie, who posts here. I believe her sister's eyesight was saved by steroid injections. I think she had two shots in each eye and the uveitis has not come back again. Her sister has Lyme, not her.
Certain eye problems are common with Lyme since even the immune system can't reach some parts of the eye.
Good luck,
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
That sounds worth trying but the link is dead could you repost the link to the vitacost.com
Posts: 6 | From arcadia, ok | Registered: Sep 2009
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