Aa
got into opthamologist! gonna try for abx!
I got into an appt for tomorrow ophthamologist! Thankyou for suggesting it! &i Btw u guys are GREAT! THIS COMMUNITY IS AMAZING! &sooo helpful! Will the opthamologist actually be able to tell if the Lyme has affected my eyes? I hope so bc it most definitely has! What should expect or be prepared for? Like how do i get him to give me antibiotics?
Yes, I am extremely light sensitive and have been for years.
It used to be so bad that I had to wear sunglases in shops, and keep the curtains closed all day at home. It's improved a lot since taking antibiotics but I still cannot open my eyes in sunlight without dark glasses on.
This light sensitivity is very common with lyme disease.
It used to be so bad that I had to wear sunglases in shops, and keep the curtains closed all day at home. It's improved a lot since taking antibiotics but I still cannot open my eyes in sunlight without dark glasses on.
This light sensitivity is very common with lyme disease.
I am very light sensitive. Never was until about 2yrs ago when the neurological stuff got HORRIBLE
Not me, but I just search online for
---- lyme disease light sensitivity ----
and got quite a few hits, if you don't get much feedback here. (I think the answer if yes, light sensitivity happens, based on the quick look I took at the sites that popped up in the search.)
---- lyme disease light sensitivity ----
and got quite a few hits, if you don't get much feedback here. (I think the answer if yes, light sensitivity happens, based on the quick look I took at the sites that popped up in the search.)
I was wondering if with the issues with vision if anyone is also more light sensitive?
What "youve" said about finding a different opthalomologist is correct---- that might be the answer. However 'not knowing about Lyme" is often used by docs in the U.S. to deny the existence of Lyme. I know it is in my state.
The next opthal. might take an entirely point of view and actually want to help you. But I don't know how much time, energy or insurance you have to be able to keep on looking.
The next opthal. might take an entirely point of view and actually want to help you. But I don't know how much time, energy or insurance you have to be able to keep on looking.
Indigo---- you may notice that the link I gave you has been modified. MedHelp did that because we're not supposed to send links of outside support groups or external sites without prior permission.
Sorry I can't send that to you.
Sorry I can't send that to you.
@Indigo----- When I was giving you some references to contact I missed this one:
http://****.****/****/IndianaLyme/
It's not very active now---- that's often what happens to on line groups but there is some activity this month. Perhaps you might get a name there---- but my disclaimer as always (and I haven't read that group) there could be some 'strange' people there. :)
There's another woman here looking for a doctor in IN--- it was a few months ago but maybe you could send her a private email asking for information?
http://www.medhelp.org/posts/Lyme-Disease/Need-a-LLD-in-Indiana--or-even-Ohio/show/1884754
http://****.****/****/IndianaLyme/
It's not very active now---- that's often what happens to on line groups but there is some activity this month. Perhaps you might get a name there---- but my disclaimer as always (and I haven't read that group) there could be some 'strange' people there. :)
There's another woman here looking for a doctor in IN--- it was a few months ago but maybe you could send her a private email asking for information?
http://www.medhelp.org/posts/Lyme-Disease/Need-a-LLD-in-Indiana--or-even-Ohio/show/1884754
In case this is any help,. the lady who checked my eyes actually had operating rooms in her clinic where she operates on people's eyes, that was the level of qualifications she had. (laser eye surgery for vision correction, removal of cataracts etc, the whole works).
I think that is the level of person you need to see.
I am so sorry you had this dreadful experience.
I had a similarly upsetting (actualy more so because she also molested me) experience with an endocrinologist a few months ago trying to find out what the lumps in my thyroid gland are.
So I am really with you on the level of trauma this causes.
But please don't just leave it here, take our words of support and encouragement and just keep on fighting, look for a new doctor, and don't give up.
xxxxx
I think that is the level of person you need to see.
I am so sorry you had this dreadful experience.
I had a similarly upsetting (actualy more so because she also molested me) experience with an endocrinologist a few months ago trying to find out what the lumps in my thyroid gland are.
So I am really with you on the level of trauma this causes.
But please don't just leave it here, take our words of support and encouragement and just keep on fighting, look for a new doctor, and don't give up.
xxxxx
Indigo, what level of qualification did that ophthalmologist have?
If he didn't know about lyme disease I would say you just didn't find someone sufficiently qualified.
I seriously would try to find someone good enough to help - i don't know the classes of qualifications in the US... can anyone else help?
If he didn't know about lyme disease I would say you just didn't find someone sufficiently qualified.
I seriously would try to find someone good enough to help - i don't know the classes of qualifications in the US... can anyone else help?
If you can't find an LLMD get a holistic md! That's the only way I was able to get abx til I got in with the LLMD. Make sure they are an actual md first. You will still have to pay out of pocket, but you will get what you need. They can fit you in quickly, so no wait list and they can work with you on herbs for treatment as well. They usually won't do IV abx or Igenex testing, so still look for an LLMD, but I think holistic is the best way to go in the meantime. I found mine when I was desperately searching for NDT back when I just thought I had Hashimoto's. google NDT holistic doctor in [your state] and see what pops up. The reason why is usually if you can find a doc that will prescribe NDT then they are a very understanding, willing to do anything for you, doc - will treat Lyme as well!
Don't worry about the crying bit! I cry in every doctors office. I was told by one a-hole that I was suffering from postpartum depression when I started to cry. I just grabbed my purse as soon as she said it and walked out of the office. I can't wait to rub Hopkins' biopsy findings in her face!
Hang in there and get thee a holistic med!
Don't worry about the crying bit! I cry in every doctors office. I was told by one a-hole that I was suffering from postpartum depression when I started to cry. I just grabbed my purse as soon as she said it and walked out of the office. I can't wait to rub Hopkins' biopsy findings in her face!
Hang in there and get thee a holistic med!
Bummer. You mentioned double vision. Had that problem when I was going through an encephalopathy. Nothing like driving in the city and seeing up and down doubles of all the lights. Luckily had my brother with me and let him drive. You need something. Although there's not a bunch of medicinal chemicals in them, try some strong mint tea for now.
That's too bad! :(
But don't give up trying to find a doctor (of any kind) who might treat you. Some (all?) osteopaths (D.O.) might be able to help and some of them aren't as into Lyme denial as a regular M.D. They can rx drugs just as an M.D. does.
In NM a chiropractor can rx antibiotics. But the licensing varies widely from state to state. You might have to check your state but it's not common at all.
But don't give up trying to find a doctor (of any kind) who might treat you. Some (all?) osteopaths (D.O.) might be able to help and some of them aren't as into Lyme denial as a regular M.D. They can rx drugs just as an M.D. does.
In NM a chiropractor can rx antibiotics. But the licensing varies widely from state to state. You might have to check your state but it's not common at all.
No luck at ALL! All he did was give me an eye exam and told me I need a new Rheumatologist since mine wont treat me(he didn't know much about Lyme). I started crying and he probably thought I was crazy. I was trying soo hard not to cry but I couldn't help it. I was just so disappointed and I started thinking about how hard this all is! Which makes me just so sad, hurt, angry..etc.
Well here goes nothing!(well hopefully SOMETHING). Leaving for opthamologist now! Read all of your advice thankyou soooo sooo much! Please pray he is open minded and educated about lyme! Wish me luck! Ill update when I am done!!!
I am still being treated. Going back for a follow up end of May. The fact that this guy is very Lyme aware makes me feel much better.
Glad to hear you've got improvement with the drops.
Are you still being treated? Or are your eyes OK for now?
Are you still being treated? Or are your eyes OK for now?
I think the specialist is the way to go. The regular opthomologist doesn't have the equipment to see the nerves at the back of the eye which is where the damage was from.
Mine was not called a Neuro opthomologist but just a Retina Specialist. Since I am on antibiotics, he didn't get me more but I was getting intense pain in my eyes like there was glass in them. Also floaters and blurry vision.
My problem was extreme inflammation in addition to borderline optic neuropathy which can cause blindness. After trying different things I was helped with a steroid drop. Even though we are not suppose to have steroids , the amount and kind hasn't bothered me but has helped a great deal. It feels so much better! If I had not been on abx, he would have given it to me.
My problem was extreme inflammation in addition to borderline optic neuropathy which can cause blindness. After trying different things I was helped with a steroid drop. Even though we are not suppose to have steroids , the amount and kind hasn't bothered me but has helped a great deal. It feels so much better! If I had not been on abx, he would have given it to me.
I haven't read all the posts as I am on a hurry, so sorry if I'm being irrelevant, but here's what hte excellent ophthalmologist tested me for when I mentioned Lyme (It wa partly guided by my lyme doc who wanted the whole run of tests done).
test of peripheral vision (I had to stare into goggles focusing on an X and click a thingy every time I saw a little light flash in the periphery. It took ages and was an exhausting test)
test of colour vision (colourblindness) which lyme can cause
You do one eye at a time as usually you get one eye that stops seeing colours properly, they all go a bit grey, that means something serious but I cannot remember what. What I'm trying to say is, you usually get this problem in only one eye and you can detect it by comparing to the other eye which may be normal.
standard eyesight test/astigmatism etc
photos of retina to look for retinopathy of any kind - this detects damage to optic nerve
drops in eyes to stain and check state of corneas
exam of vascularisation in eyeballs (I have vascularised left eyeball, means lots of blood vessels growing into cornea where they should not be, cannot remember how lyme causse that, it's the standard check they do when you're getting contact lenses.)
asked lots of questions, I particularly remember being asked abotu floaters, light sensitivity and pain.
I also think they did something to monitor the contraction of my pupils to make sure it was normal, I am not so sure about this as I was exhausted by this point - I was there over 3 hours.
Hope this is helpful.
BTW the two most important thigs were peripheral vision test and photos of retinas, these are the ones that check for the most serious damage you can get (ie damage that can make you go blind).
test of peripheral vision (I had to stare into goggles focusing on an X and click a thingy every time I saw a little light flash in the periphery. It took ages and was an exhausting test)
test of colour vision (colourblindness) which lyme can cause
You do one eye at a time as usually you get one eye that stops seeing colours properly, they all go a bit grey, that means something serious but I cannot remember what. What I'm trying to say is, you usually get this problem in only one eye and you can detect it by comparing to the other eye which may be normal.
standard eyesight test/astigmatism etc
photos of retina to look for retinopathy of any kind - this detects damage to optic nerve
drops in eyes to stain and check state of corneas
exam of vascularisation in eyeballs (I have vascularised left eyeball, means lots of blood vessels growing into cornea where they should not be, cannot remember how lyme causse that, it's the standard check they do when you're getting contact lenses.)
asked lots of questions, I particularly remember being asked abotu floaters, light sensitivity and pain.
I also think they did something to monitor the contraction of my pupils to make sure it was normal, I am not so sure about this as I was exhausted by this point - I was there over 3 hours.
Hope this is helpful.
BTW the two most important thigs were peripheral vision test and photos of retinas, these are the ones that check for the most serious damage you can get (ie damage that can make you go blind).
Yes, do see the ophthalmologist -- no other doc knows enough about eyes to be able to treat them. Of all the many docs I saw when I was pre- and post- diagnosis, the ophthalmologist was right at the top (with my LLMD) in taking it seriously. Call tomorrow for an appointment, okay?
Keep us posted -- you're on your way!
Keep us posted -- you're on your way!
That is amazing u are getting it treated now!!! Awesome! I hope this leads me in the right direction or something good comes from it! I just need to get this ball rolling bc I cant keep being a "antibiotic seeker" that I am..they are catching on..lol. But they help soooooo much! Ugh why does it have to be so hard. Just hoping this will be a step in the right direction!
Yes..It is like santa is coming early! An LLMD is what this girl REALLY wants tho! :( But I am thankful and just praying this guy knows a little something about lyme and wont blow me off like everyone else! Thanks for the Tips! Will do! :)
YES go to the eye dr for SURE! And oh man I sure can relate to everything u say! Our medical history and issues in general really seem to be in sync! I have a hard time reading bc its hard to get the words to come into focus. and so yeah, I have become a slower reader due to my vision issues. But yes, see that dr for sure! I have heard they take lyme seriously(u are soo lucky u have an LLMD! I wish I could find one!) and can maybe tell u have Lyme from your eyes..I am hoping..?
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