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?
That's great news! Almost like Santa coming early.
I don't know how they detect Lyme-related vision problems, but tell him/her all your symptoms -- not just eye-related, but those are first up in the conversation I'd think -- and when the appointment is over, ask if the doc can recommend a general Lyme specialist because you're coming up dry. Don't want the doc to feel like you're just trying to score a referral.
This is indeed news. Keep us posted--
I don't know how they detect Lyme-related vision problems, but tell him/her all your symptoms -- not just eye-related, but those are first up in the conversation I'd think -- and when the appointment is over, ask if the doc can recommend a general Lyme specialist because you're coming up dry. Don't want the doc to feel like you're just trying to score a referral.
This is indeed news. Keep us posted--
I found an article on PubMed that gave a case study of a patient who had optic neuritis as their only symptom. Somehow, someone figured out this patient had Bartonella, and their vision problems were their only apparent symptom, at least at that point in time.
This is the first I'd read that Bartonella can affect the eyes. I had light sensitivity, worsened near vision, various floaters, and a blurry spot in my right eye, but I'd always attributed these symptoms to Lyme. My ON testing by the MS specialist came back fine, so that's a relief. They couldn't see anything in my eyes to explain my vision issues, which is consistent with Lyme affecting the nerves from the brain to the eyes. My eyes looked fine. It was the signals from the eyes to the brain that were compromised.
A good opthamologist should understand that the nerves could be affected if you're describing vision problems like this but s/he can't see anything wrong. Let us know how the appointment goes.
This is the first I'd read that Bartonella can affect the eyes. I had light sensitivity, worsened near vision, various floaters, and a blurry spot in my right eye, but I'd always attributed these symptoms to Lyme. My ON testing by the MS specialist came back fine, so that's a relief. They couldn't see anything in my eyes to explain my vision issues, which is consistent with Lyme affecting the nerves from the brain to the eyes. My eyes looked fine. It was the signals from the eyes to the brain that were compromised.
A good opthamologist should understand that the nerves could be affected if you're describing vision problems like this but s/he can't see anything wrong. Let us know how the appointment goes.
I have had to wear glasses for a long time---- pre Lyme for reading and close work mostly. Although I'm sure that some of my vision changes are aging related and I know that my eyeballs are shaped/oriented in different ways which causes my astigmatism------ I also wondered if Bart was the reason for other problems with my eyes: photo sensitivity for one.
I happened to be living in a large city then that had a neuro-opthamologist who was very much respected in the medical and patient community. So---- I finally got in with him. I've never had such a long VERY long series of tests before. His nurses warned me about that---- and the fact that he didn't talk much. :) He didn't blow off Lyme and did seem to accept what Bart might do to vision.
Anyhoo----bottom line------ some changes in my glasses but he didn't see optic neuritis or anything that 'proved' an infection-cause. I think I trust his evaluation simply because he didn't seem to have any kind of agenda----- just thorough investigation. But he didn't have me take an MRI of the optic nerve, which might have shown demyelination of the optic nerve----- Maybe because nothing in my health history suggests MS.
I don't think that means that Bart. isn't responsible---- just that nothing presented as if.
@Indigo--- there are non-neuro opthamologists that have found inflammation in the eye----- so, as strange as this may sound, should I hope s/he does? (grin)
I happened to be living in a large city then that had a neuro-opthamologist who was very much respected in the medical and patient community. So---- I finally got in with him. I've never had such a long VERY long series of tests before. His nurses warned me about that---- and the fact that he didn't talk much. :) He didn't blow off Lyme and did seem to accept what Bart might do to vision.
Anyhoo----bottom line------ some changes in my glasses but he didn't see optic neuritis or anything that 'proved' an infection-cause. I think I trust his evaluation simply because he didn't seem to have any kind of agenda----- just thorough investigation. But he didn't have me take an MRI of the optic nerve, which might have shown demyelination of the optic nerve----- Maybe because nothing in my health history suggests MS.
I don't think that means that Bart. isn't responsible---- just that nothing presented as if.
@Indigo--- there are non-neuro opthamologists that have found inflammation in the eye----- so, as strange as this may sound, should I hope s/he does? (grin)
My opthomologist knowing I had Lyme sent me to a Lyme aware Retina specialist where he was able to see the damage to my optic nerves caused by Lyme. We are treating it now.
What is the treatment? antibiotics, and if so, what kind(s)? just wondering.
Glad you found a good doc!
Glad you found a good doc!
Is it a neuro-opthamologist that was able to see the damage? I went to an opthamologist when all of this started going downhill fast and he got the ball rolling on getting to a diagnosis (starting with rheumatology). He referred me to a neuro-opthamologist also, but I instead went to rheumatologist and moved from there. My LLMD asked me today if I ever saw the neuro eye doc that I was referred to and when I said no she was visibly disappointed. I've just seen a billion doctors, so I thought I could skip that one. However my vision is really getting bad. Sometimes double vision, like the world is a collidoscope (sorry worst speller in the world on top of brain fog and a phone that changes my spelling to words I don't even mean to type = a mess). Also, blurry vision is very bad! I can read but it takes a long time for my eyes to switch focus. I write "slow to focus" on all of my medical forms. Do you think I should follow through with the neuro eye doc?
I hope so too! Like I said I have had double vision, blurred vision for a little over a year now. It gets pretty bad some days. I am excited about this appt and I sure do hope he finds something that can prove once and for all that I have Lyme Disease! Wishful Thinking I know..
I have no idea..but I am running low on antibiotics and I was gonna try and to make a possible ER run but then I remembered I had a referral from a couple mos ago due to my eye issues (blurred vision, double vision, light sensitivity). And someone on here(I believe cave..sry if it was someone else my brainfog has kicked in along with my child not listening to me or going to sleep right now, and I can no longer "multitask" like before, and I get irritable with little noises that distract me which just plain ***** bc I feel like it is affecting my parenting) Anyway, I don't know what kind he will give me but I haven't found an LLMD so I am hoping maybe this guy will see signs of Lyme in my eyes..? Hopefully.
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..?
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! :)
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, 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!
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).
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 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.
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 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.
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!!!
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.
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.
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.
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!
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?
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