posted
Both of my eyes are dilated, I am having trouble focusing on things close up, and far, but luckily my glasses help clear things up for the distance vision. My eyes feel weird too like a dull pain or pressure with burnign. I am noticing more floaters lately, I have optic neuritis in my right eye, constant low grade fever....
I am starting to give up, all of this has me super depressed, and scared since my good eye is now effected. I dont know what to do, I just feel like walking into the hospital and making someone figure all this out but I know it is not that simple, I have been sick and almost blind in one eye since August... Still waiting for igenex tests.... I am starting to doubt lyme, but then again I have no idea what could be wrong and nobody is willing to figure it out. I am on antibiotics but seem to be getting worse, the fevers are still there, I know it has only been two weeks on antibiotics but shouldnt it slow down or shouldnt there be a good day if it is lyme once treatment starts? I want to crawl into a dark hole right now......
-Bob Posts: 67 | From New Hampshire | Registered: Sep 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
What Lyme tests have you had done? What were the results? 2 weeks is pretty early to see any progress...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
No results yet, I am still waiting... Diagnosis is clinical so far. The results I am waiting for are Lyme IgG/IgM/PCR and Babesia FISH from Igenex and elisa/wb from LabCorp. I am just not having any good periods anymore.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Maybe your LLMD could give IGeneX a call ... and see if they could get a move on it! Perhaps they left a fax number off the form?
I'm sure it must be scary to have such vision problems.
The hospital would probably not be very much help and would confound you further.
You might have a PICC line in your future. Some LLMD's feel it gives the highest antibiotic saturation possible in your bloodstream.
I will pray your situation turns around soon. Please hang in there and know we are here for you and thinking of you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
It is easy to say "Hang in there," but that is not easy to do. I hope you can report the changes in your condition to your doctor and get some help or reassurance there. Maybe something to help relieve depression would be a good idea.
For what it is worth, some people don't begin to feel better for quite a while. Lots of people feel worse before they feel better with Lyme disease treatment. You may be going through a Herxheimer reaction.
I had lots of visual problems with Lyme, but they did clear up with treatment.
I had low grade fever for a very long time, usually in the late afternoon.
I hope you have friends and family to talk to and to turn to. It might be good to get in touch with some other Lyme patients in your area.
If you go to the menu on the upper right and click on support groups, you should be able to find a group in your area.
I hope you know there are lots of people here who really sympathize with you. I hope you will keep posting here.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
bob-i just sent you a long private message-don't worry about it-i really think you should call me. if you need the number again i will send it to you. it's really good you are seeking treatment-but going into a hospital for lyme can be a mistake. if you are having chest pain or breathing problems thats different. please give me a call.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lyme_suz
Unregistered
posted
Hey Bob,
Sorry to hear that your not getting relief yet.
It can really take quite a while to get feeling better on the antibiotics if you do indeed have lyme.
I have been on for 7mos and have seen dramatic improvement this last month.
It is definitely the it gets worse or at least feels worse before it gets better.
It does get better!
Is there anything you can do for diversion? I know it takes creativity when your health is compromised. Maybe movies or those books on tape. Walking is good. I have to say I usually get annoyed when someone suggests that because I am so tired.
posted
Thanks for all your kind words of encouragement. It really does mean a lot to me. I am just scared that if my vision gets much worse I will not be able to access this site anymore and will become completely cut off.
There are no support groups in my area unfortunately and since I can't drive and my fiance is working her butt off to pay the bills with me being stuck here my options are limited.
I did have the diversion of playing video games before my good eye started having problems. I also started a home business so I could get insurance when the problems started since I knew I would be stuck at home. I was keeping myself busy with that but I am running out of energy since my work for it is computer based.... I had just finished designing the website before things started getting worse.
I think I will make an emergency appt for the eye doctor tomorrow because my eyes feel like there is so much pressure in them, I will have him check the pressure of my eyes, I wonder if lyme can cause glaucoma, or maybe some other part is inflamed....
-Bob.
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
I am on Ceftin, 1000mg twice a day.
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Bob, I am so sorry you're having to go through this hard time.
Like you, my vision has gotten a lot worse since starting abx -- more limited range, more grey peripheral areas and a lot more floaters. For me, it definitely gets worse at night. I had an eye test, and, like so many other medical tests, it showed nothing.
I tested positive for Lyme in June and I'm also on Ceftin. June and July were absolutely nightmarish for me. I track all my symptoms on a daily basis, and looking back at the charts, I realize that in June, I probably had about 7 or 8 functioning days. That's it. Plus a scary herx that left me paralyzed.
Even though I still have bad days (today is one), they're never quite as bad as they were at the beginning. Friends who saw me then and see me now say there's a significant improvement. It doesn't always seem that way to me.
I'll also say that in addition to the abx and many many herbs, my LLMD suggested I take an anti-depressant. At first, Bob, I resisted, but now, I'm glad I followed the suggestion. As it is, I've had some bleak feelings; I couldn't imagine what it would be like otherwise. According to my doc, depression is actually a sympotom of Lyme and needs to be treated like that.
Just my experience.
Hopefully, you'll start seeing some relief soon...or at least a good day now and then.
My thoughts are with you!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Bob: Are you being treated by someone who knows something about Lyme- specifically Ocular Lyme and how it can affect the eyes?
I had a tremendous amount of problems with my eyes with late stage Lyme- optic nueritis, and posterior Uveitis -
Red, eye, dry eye, Pain when turning the eyes left right up or down. One pupil not responding like the other - constant head aches- halos around every light, light sensitivity - sometimes central visual field problem, some times peripheral visual field problems - sometime it looked like I was looking thru a gob of motor oil- I had shimmering of the peripherqal field, and also had so many immune cells in vitreous humor they accumulated & it blocked part of the visual field all together in one eye.
I had to pulse my abx because alot of them made my eye symptoms worse It was probably a herx- but what ever you want to call it, I had to back off on the abx - then restart them when my eyes were a little better -
IMO it's alot more scary, when the major flaring symptom is your vision. There no way I dared stay on abx continually for fear of my eye site.
You really really need a good opthalmologist that hopefully can work with your LLMD and they can pace the abx if needed, and monitor your eyes for you.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
OMG, I just got off the phone with the eye doctor as I was trying to make an emergency visit, he told me to make an appointment with my neurologist if it was lyme related....
This is after I told him all the symptoms of eye inflamation and possible low angle glaucoma I am experiencing (an eye emergency).....
How the hell is the neurologist going to check my inner ocular pressure and see if any part of my eye is inflamed, how is the neurologist going to make sure I don't have uveits, keratitis, etc.......
I am seriously pissed off, I just left a message with my LLMD to see if he knows any good lyme literate eye doctors near me or at least an eye doctor who is not completely ignorant......
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
I haven't had much luck with specialists who looked at the various symptoms of lyme related to their specialty. That includes eye docs. At best, they document the situation. Put a name on it. They don't do anything about it.
I had a lot of eye symptoms. Went off abx for two months to get more testing, vitreous separation in my eye, now I have a black blob that wanders around in my field of vision. This is permanent. Had a lot of flashing lights, still a few even now after several years. Think it was a mistake to take time off from abx when the symptoms were so active, just for more tests.
What this means is that treatment is needed to prevent the worst from happening. But, as Barb said, worsening symptoms can be herx and you might back off briefly if they get too bad. Don't remember how long you have been sick, but if a long time, treatment will also take a long time. Get prepared for a marathon, not a sprint. Mental preparation helps, so that you aren't waiting impatiently for a cure every day, but living every day as best you can, knowing you are doing what it takes to improve.
Posts: 8430 | From Not available | Registered: Oct 2000
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I guess I just want to be sure my eye pressure is not building up to dangerous levels, which I understand lyme can do and is a potential problem if ones eyes are dilated for a long time as it can block the dranage of fluid in the eye.
And low angle glaucoma can cause sudden permanent blindness... But a pressure problem can be fixed with laser surgery or medication before the damage is done....
Since this is effecting the eye that is not almost blind at the moment due to optic neuritis it makes it even more crucial I get it looked at.
I am not being impatient, it is just scary when you are not sure if these eye changes will be permanent. I have been sick with symptoms that grabbed my attention for going on 3 months. I have possibly had less serious symptoms such as fatigue, etc for up to 4-5 years, floaters came on 4.5 years ago and I am 23.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I know there's a Lyme opthamologist outside of Philadelphia. Maybe it would be worth a flight down.
I don't have his contact info, but if you're interested, I suspect you could post this in seeking doc, and someone would be able to help you.
I'd trust this doc more than a non-Lyme-aware specialist and will likely make an appointment to see him, just as soon as I've got the $.
Good luck with this. Interestingly, I had posted last night that my floaters are worse in the evening. But this morning, I was struggling to read the rest of the posts as the floaters wandered all across my field of vision.
Never can keep up with this disease --
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
OK, Bob. Think you know more about this than I do and if anything can be done, it would be worth looking into. I was mainly just passing along my own experience with eye problems.
I can provide the name of the PA lyme literate eye doc, if anyone interested.
(And how come you aren't impatient? I AM, I WANT TO BE WELL NOW!!!)
Posts: 8430 | From Not available | Registered: Oct 2000
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Bob-
I sent you a private message with the name of an Opthmologist at Darmouth Hitchcock. (I see you're in NH).
Barb
PS - you should ahve a little message noting that you have a private message- if you don't see it, click on "my profile" and it'll be in there.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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As fate would have it, today was a "good day" with my eyes and of course it was the day I went to the ophthalmologist..... Everything looks fine he said... Well at least I dont have high eye pressure so that makes me feel better. He said I have dry eyes..... heh
The test results from lab corp came it but since the elisa was negative the lab did nor run a western blot even though the doctor requested it.... What a stupid lab.... Still no word on the Igenex, the llmd called them but they are backed up apparently....
LLMD added doxy to my ceftin for the mean time.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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