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lyme disease and visual disturbances
I have chronic lyme disease. Several weeks ago I woke up and everything was bright, brilliant green even my two white dogs! It lasted a few seconds and then normalized. I fell back to sleep and again the same thing happened. For the next 6 days it happened every time I fell asleep and woke up. Two days ago, fully awake, there was a bright green round sphere on my wall that remained there for several minutes. Yesterday, my phone rang, I was in a deep sleep, when I woke up there was a green wall blocking my view of anything and I couldn't find my phone; it dissipated and my vision returned to normal. Normal is a misnomer because for the past 6 months I have developed knat like floaters in my right eye. I went to my eye doctor who told me I had a torn viscus. Two weeks ago, after the green started happening I returned to my physician who sent me to a retina specialist. He had no explanation for the green, but diagnosed me as having bilateral acute narrow angle glaucoma, bilateral torn viscus and a hemorrhage in my left eye. I am now scheduled for laser procedure on both eyes to puncture holes in the narrowing forestalling any escalation in the glaucoma. However, I seem to have a growing number of eye disturbances in both eyes and continue to have this color abnormality. Is anyone else experiencing anything like this and if so do you have a cause and diagnosis? Grateful for any guidance.
Welcome to MedHelp Lyme --
No, I haven't had those symptoms, but I did in the last few days read some similar comments here. If you search for various words, you might find those posts -- I just don't remember who posted them.
Also, you can start a new thread here (instead of tacking on to this three year old thread) and get better visibility for your question.
Have you seen an ophthalmologist (MD specializing in eyes) about your symptoms? I found that ophthalmologists are generally very up to date about Lyme and take it quite seriously. That's where I would go. Let us know how you do, okay?
No, I haven't had those symptoms, but I did in the last few days read some similar comments here. If you search for various words, you might find those posts -- I just don't remember who posted them.
Also, you can start a new thread here (instead of tacking on to this three year old thread) and get better visibility for your question.
Have you seen an ophthalmologist (MD specializing in eyes) about your symptoms? I found that ophthalmologists are generally very up to date about Lyme and take it quite seriously. That's where I would go. Let us know how you do, okay?
Have you ever had evoked potential tests? If yes, and if results all are normal, then MS is highly unlikely.
My neurologists found white matter lesions, and thought MS is one of possibility until my evoked potential tests and spinal tap results show no evidence of MS.
Just my own thought.
My neurologists found white matter lesions, and thought MS is one of possibility until my evoked potential tests and spinal tap results show no evidence of MS.
Just my own thought.
Thank you for your messages -- I am very glad to hear you have such a 'deep bench' of resources on Lyme and its little friends. That perspective makes all the difference in your decisions, treatment and outcome.
We often have visitors here who do what I did pre-Lyme: assume that all docs have open minds and are forever learning and pondering as discoveries were made. Sadly, Lyme does not currently follow that paradigm within the medical community, and that leads to docs who either (1) claim to be experts in Lyme treatment, when they are actually following IDSA standards to the letter (and thus hand over two weeks of doxycycline and pronounce a cure, with no consideration of co-infections or the possibility that Lyme is persistent) or (2) who are so much on the fringes that it makes the hair on the back of my neck stand up (e.g., the so-called "Marshall Protocol") or (3) who actually do have open minds and are pursuing a better understanding and treatment for those of us suffering (the LLMDs, hallelujah!).
When I looked at your doc's website and saw the list of fibro etc. that he treats, I was concerned that he may be in the group of docs who troll for desperate people who are unable to differentiate between cutting-edge medicine and quackery -- or (more favorably) that he posts the catch-all syndromes (like fibromyalgia) to show that he is willing to treat people who have been told they have something like that, but he does not necessarily subscribe to those theories. It sounds from your description and your level of awareness about Lyme+ that he is posting as he does to show open-mindedness. That's as it should be!
We often post here to suggest that people looking for a local LLMD contact referral sources (like ILADS has), and I always do so with a tiny qualm because I worry that some of the well-meaning but over-the-edge docs sign up for those referral lists, and I don't know if there is any vetting going on before these docs get added to the referral list. I don't know, and I doubt there is any 'loyalty' test available or given, because Lyme is so cutting edge. So I worry.
Hence my comments to you. I am very glad to hear that you are comfortable with your doc's approach and that you are cautious and knowledgeable. I am however sorry to hear about your family's suffering with Lyme. Sigh. Someday this miserable disease will be like the flu: miserable but avoidable and/or largely manageable. Someday! Someday soon.
Do keep us posted on how you do! Best wishes to you and your family --
We often have visitors here who do what I did pre-Lyme: assume that all docs have open minds and are forever learning and pondering as discoveries were made. Sadly, Lyme does not currently follow that paradigm within the medical community, and that leads to docs who either (1) claim to be experts in Lyme treatment, when they are actually following IDSA standards to the letter (and thus hand over two weeks of doxycycline and pronounce a cure, with no consideration of co-infections or the possibility that Lyme is persistent) or (2) who are so much on the fringes that it makes the hair on the back of my neck stand up (e.g., the so-called "Marshall Protocol") or (3) who actually do have open minds and are pursuing a better understanding and treatment for those of us suffering (the LLMDs, hallelujah!).
When I looked at your doc's website and saw the list of fibro etc. that he treats, I was concerned that he may be in the group of docs who troll for desperate people who are unable to differentiate between cutting-edge medicine and quackery -- or (more favorably) that he posts the catch-all syndromes (like fibromyalgia) to show that he is willing to treat people who have been told they have something like that, but he does not necessarily subscribe to those theories. It sounds from your description and your level of awareness about Lyme+ that he is posting as he does to show open-mindedness. That's as it should be!
We often post here to suggest that people looking for a local LLMD contact referral sources (like ILADS has), and I always do so with a tiny qualm because I worry that some of the well-meaning but over-the-edge docs sign up for those referral lists, and I don't know if there is any vetting going on before these docs get added to the referral list. I don't know, and I doubt there is any 'loyalty' test available or given, because Lyme is so cutting edge. So I worry.
Hence my comments to you. I am very glad to hear that you are comfortable with your doc's approach and that you are cautious and knowledgeable. I am however sorry to hear about your family's suffering with Lyme. Sigh. Someday this miserable disease will be like the flu: miserable but avoidable and/or largely manageable. Someday! Someday soon.
Do keep us posted on how you do! Best wishes to you and your family --
Jackie, my Lyme physician wanted to send me to an eye doc immediately - directly from his office. I was reluctant because his office is 3 hrs away from me and I had a e/doc near home. (At the time, all I had or was aware of was the onset of gnat-like floaters in my R eye.) I surmised that if I did have a problem that required multiple dr visits I'd prefer to be closer to home. To your other question I do have Bartonella. I am fortunate to have w/n my own family a cousin through marriage who has Lyme, passed it on to her 3 children in vitro and has been a very active advocate and educator regarding this insidious disease. She also formed one of the first Lyme organizations and has raised many millions of dollars on research (which is going to result in very positive help for those of us suffering chronic lyme). Back to your assertion that my lyme physician (from your tone, and forgive me if I'm misconstruing your representation), his name was given to me by not one but two national lyme organizations. He's a brilliant man who had made a difference in many lives including mine. I know your heart is clearly wanting to guide me to seek my best advocate/s and knowledgable physicians. I understand truly I do, but I am not of the ilk to idolize physicians. I read, I ask questions, I am in no way a submissive patient, I require and have always required full partnership between myself and my physician. Finally, I am not adverse to changing docs if my care is inferior or the results lackluster. I hope this helps give a better insight into me.
I remain, appreciatively,
Norma.
I remain, appreciatively,
Norma.
Jackie,
Thank you for sharing your remarkable knowledge. I heartily agree regarding my eyes. I've seen two expert ophthalmologists in the same office, one of whom is a long-time friend and my eye physician since 1985 so he is well-familiar with my vision and my eyes. He called in one of his partners and together they sent me to a retinal specialist. Today I had my first of two laser surgeries on my eyes to correct the acute narrow angle glaucoma. However, to date no one has an iota of diagnosis for my green visual problems. I took your lead and recommendation and called the Bascom Palmer Eye Institute and I have an appt on 6/13. I am so grateful for your guidance in this regard. I shall keep you posted.
More than appreciative,
Norma
Thank you for sharing your remarkable knowledge. I heartily agree regarding my eyes. I've seen two expert ophthalmologists in the same office, one of whom is a long-time friend and my eye physician since 1985 so he is well-familiar with my vision and my eyes. He called in one of his partners and together they sent me to a retinal specialist. Today I had my first of two laser surgeries on my eyes to correct the acute narrow angle glaucoma. However, to date no one has an iota of diagnosis for my green visual problems. I took your lead and recommendation and called the Bascom Palmer Eye Institute and I have an appt on 6/13. I am so grateful for your guidance in this regard. I shall keep you posted.
More than appreciative,
Norma
We are all novices -- it just that some docs don't realize that they too are novices. :)
One major issue in Lyme vs MS is that MS is often treated with steroids, which are contraindicated in Lyme because of immune suppression that results, which is the opposite of treatment for a bacterial infection such as Lyme. That's the problem with docs who diagnose as MS what is actually Lyme: the treatments are exactly opposite in each of those ailments.
I am a bit surprised that your doc, who seems to hold himself out as an LLMD, has not guided you to an ophthalmologist to deal with your eye issues.
Were you tested for coinfections such as bartonella and babesiosis and a few others? Docs usually test for those additional infections based on symptoms, but they need to know the symptoms to do so!
One major issue in Lyme vs MS is that MS is often treated with steroids, which are contraindicated in Lyme because of immune suppression that results, which is the opposite of treatment for a bacterial infection such as Lyme. That's the problem with docs who diagnose as MS what is actually Lyme: the treatments are exactly opposite in each of those ailments.
I am a bit surprised that your doc, who seems to hold himself out as an LLMD, has not guided you to an ophthalmologist to deal with your eye issues.
Were you tested for coinfections such as bartonella and babesiosis and a few others? Docs usually test for those additional infections based on symptoms, but they need to know the symptoms to do so!
Jackie,
I appreciate your wisdom. Several years back I was producing and hosting a television show. I wanted to bring attention to Lyme. The Lyme Foundation directed me to a physician they considered one of the three top Lyme specialists in the country. At the time, I wasn't feeling well I was certain it was my MS acting up again. Every time we broke for commercial he'd query me about my symptoms and finally informed me that he thought I just might have Lyme.
I poo pooed the notion because I had never remembered a tick bite and was heretofore a city girl and my MS was documented back to '74. Anyway, to make a long story short, a year later, I was no better and getting weaker everyday. So, I called this wonderful doctor: Michael Cichon on his private cell and he told me to come right in despite his more than three-month waiting list. I tested positive for Lyme.
Immediately, I questioned my MS diagnosis for so many years, but I did find that there are more than many thousands of MS/Lyme infected individuals. I don't know, Jackie, if it rates equal to the lottery. Frankly, it no longer is important to me to know or convince anyone that I, and many others, can have two such medical maladies, what matters only is that I get well. I have been on IV Rocephin for over 6 months, ditto Vancomycin and a multitude of oral antibiotics. I have received great healthy benefits from a remarkable energy worker: Ruth Golush and I still work with her via the telephone monthly. She has been instrumental in keeping me well,
I immediately contacted the Bascom Palmer Eye Institute and have an appt in early June, thank you so much for this valuable information. I am so very grateful.
Please don't misunderstand me, I am clearly a novice in this disease, but I have a learned a lot from personal experience and the gracious sharing of many other suffering Lymer's. I appreciate your guidance and your heart very much, Jackie.
I appreciate your wisdom. Several years back I was producing and hosting a television show. I wanted to bring attention to Lyme. The Lyme Foundation directed me to a physician they considered one of the three top Lyme specialists in the country. At the time, I wasn't feeling well I was certain it was my MS acting up again. Every time we broke for commercial he'd query me about my symptoms and finally informed me that he thought I just might have Lyme.
I poo pooed the notion because I had never remembered a tick bite and was heretofore a city girl and my MS was documented back to '74. Anyway, to make a long story short, a year later, I was no better and getting weaker everyday. So, I called this wonderful doctor: Michael Cichon on his private cell and he told me to come right in despite his more than three-month waiting list. I tested positive for Lyme.
Immediately, I questioned my MS diagnosis for so many years, but I did find that there are more than many thousands of MS/Lyme infected individuals. I don't know, Jackie, if it rates equal to the lottery. Frankly, it no longer is important to me to know or convince anyone that I, and many others, can have two such medical maladies, what matters only is that I get well. I have been on IV Rocephin for over 6 months, ditto Vancomycin and a multitude of oral antibiotics. I have received great healthy benefits from a remarkable energy worker: Ruth Golush and I still work with her via the telephone monthly. She has been instrumental in keeping me well,
I immediately contacted the Bascom Palmer Eye Institute and have an appt in early June, thank you so much for this valuable information. I am so very grateful.
Please don't misunderstand me, I am clearly a novice in this disease, but I have a learned a lot from personal experience and the gracious sharing of many other suffering Lymer's. I appreciate your guidance and your heart very much, Jackie.
Ricobord,
Thank you for writing. This forum has been an excellent experience thus far. I have all the same visual disturbances you mentioned as well. The floaters in my right eye began about 9 months ago, my ID doc, who is one of the three premiere Lyme physicians in the country, was immediately alarmed, as Lyme can affect the retina.
My eye physician carefully examined my eye and pronounced I had a torn viscus. Subsequently, I have a larger floater in my left eye, which he now tells me I have not only a torn viscus in that eye as well, but a hemorrhage and bilateral narrow angle glaucoma! Too peculiar if you ask me. Suddenly, I now have all this going on with my eyes. I'm scheduled for the first of two laser treatments this Thursday on one eye and next week the other eye.
I do so appreciate your concern and willingness to share.
Thank you for writing. This forum has been an excellent experience thus far. I have all the same visual disturbances you mentioned as well. The floaters in my right eye began about 9 months ago, my ID doc, who is one of the three premiere Lyme physicians in the country, was immediately alarmed, as Lyme can affect the retina.
My eye physician carefully examined my eye and pronounced I had a torn viscus. Subsequently, I have a larger floater in my left eye, which he now tells me I have not only a torn viscus in that eye as well, but a hemorrhage and bilateral narrow angle glaucoma! Too peculiar if you ask me. Suddenly, I now have all this going on with my eyes. I'm scheduled for the first of two laser treatments this Thursday on one eye and next week the other eye.
I do so appreciate your concern and willingness to share.
Jackie,
That's interesting what you said about your eye doc being on the ball about lyme disease.
When I was first diagnosed with lyme, my doc made me go to an ophthalmologist and get thoroughly checked, and she also knew all about Lyme disease .... Yes!!!! Mrs. YGB Kidding staggers back in amazement!
So I think your idea about getting the eyes checked first and working backwards sounds like a potentially good one.
What I do know is that Lyme can make you go colour blind, amongst many other nasty things it can do to your eyes. If you are uesd to seeing colours, maybe everything going green is what this feels like???
Floaters are also very common with LYLme and if I remember rightly, not so serious. I have had several periods of extremem floaters, to the point where I could never get a clear view of anything, and just when I was getting really worried, they all went away by themselves.
That's interesting what you said about your eye doc being on the ball about lyme disease.
When I was first diagnosed with lyme, my doc made me go to an ophthalmologist and get thoroughly checked, and she also knew all about Lyme disease .... Yes!!!! Mrs. YGB Kidding staggers back in amazement!
So I think your idea about getting the eyes checked first and working backwards sounds like a potentially good one.
What I do know is that Lyme can make you go colour blind, amongst many other nasty things it can do to your eyes. If you are uesd to seeing colours, maybe everything going green is what this feels like???
Floaters are also very common with LYLme and if I remember rightly, not so serious. I have had several periods of extremem floaters, to the point where I could never get a clear view of anything, and just when I was getting really worried, they all went away by themselves.
You're quite welcome. Ditto what others say above ....
I too got gnat-like floaters, much diminished with treatment for Lyme and babesiosis (a common co-infection of Lyme) ...
Rico mentions infectious disease (ID) docs not being necessarily up to date on Lyme ... I agree fully, and suggest that you find a Lyme specialist. There is a war going on in the medical community, in which any MD who treats Lyme aggressively and for an extended period of time is considered a quack by more 'mainstream' docs.
The reason seems to be that when Lyme was first recognized a couple of decades ago, the initial docs to study it (in and around Lyme, CT, hence the name of the ailment) were ID docs and rheumatologists ... those early docs are STILL around, and are high up in the hierarchy of medicine. That would be okay except that these docs and their specialty areas have frozen in time their early understandings of Lyme and what it is and how to diagnose and treat it: in a nutshell, they view it as hard to get and easy to cure.
Sadly, Lyme is an 'emerging disease' that has spread through out North America and elsewhere, in a variety of strains, and the tests and treatment are still in disarray. There is, thankfully, a separate group that has kept doing research and has progressed substantially on the diagnosis and treatment front -- ILADS is their main voluntary group, short for International Lyme and Associated Diseases Society, website at ILADS.org.
Lyme specialists can be any discipline within medicine, but often are NOT found within the ranks of ID docs and rheumies. We patients refer to Lyme specialists who 'get' the broader ideas of Lyme as LLMDs, shorthand for Lyme-Literate MDs. That is not an official title, and LLMDs don't call themselves that.
But in your situation, I'd find myself an LLMD for a second opinion. You do not need to tell your other docs that you are consulting an LLMD, because it too often happens that nonLLMDs will refuse to treat patients who consult LLMDs, on the theory that the LLMDs are committing malpractice by the tests they use (often from a lab called IGeneX) and the length of antibiotic treatment they usually prescribe (months, not weeks).
[[fwi ---- Lyme bacteria have a very slow reproductive cycle, similar to that of tuberculosis and leprosy, and it is when dividing that the bacteria are most susceptible to being killed by antibiotics. TB is commonly treated with antibiotics for ~18 months minimum, and Lyme is similar in that way to TB ... but a nonLLMD does not, for reasons I do not understand, see the parallel.]]
That is why I sent you the links and data above ... because even good and well-meaning regular (nonLLMD) docs do not have Lyme on their radar screens ... except perhaps for ophthalmologists. I mumbled something to my eye doc about being on antibiotics for Lyme disease, and he perked right up (instead of sneering) and took it verrrry seriously.
I can't say all ophths take it that seriously, but they may. In any event, that's the long story of why I sent you the different links.
In your situation, I would find an ophth who understands Lyme and start there, working backwards to a more general doc to handle your overall diagnosis and treatment.
You say your MRIs are showing spots in your brain, but an MRI cannot (to my understanding) differentiate between multiple sclerosis spots and Lyme spots in the brain. They both show up fuzzy on the images.
An LLMD is more likely to use a SPECT scan, which shows areas of low blood flow in the brain, not looking for lesions like MS. So that's another reason to see a Lyme specialist. So ... it's possible you don't have MS. But I'm not medically trained, but wanted to flag that issue for you. (Or maybe you have both Lyme AND MS, but if so, go buy a lottery ticket, given the odds of having both.)
But back to the beginning: your eyesight needs attention, and starting with an ophthalmologist to address your eye condition is what I would do rather than swim upstream through an ID doc's office, which could take forever and possible lead nowhere, given ID doc's tendencies not to take Lyme seriously. Esp since you are already told you have MS.
In your situation, I would find an ophthalmologist straight away, and then work backwards from there. Eyes first! And then the ophth may be able to recommend an LLMD for your more general care.
Your ID doc may be broadminded, but may not be. You might first want to inquire of the ID doc 'What about Lyme as a cause for my eye problems?' and then if you get blown off, find an LLMD on the sly.
You may get lucky with the ID doc, tho, and s/he may be in the closet and really be an LLMD.
I know, this political situation sounds crazy, and it is, but it's for real.
Sorry if this is confusing. Let us know how you do -- hang in there --
I too got gnat-like floaters, much diminished with treatment for Lyme and babesiosis (a common co-infection of Lyme) ...
Rico mentions infectious disease (ID) docs not being necessarily up to date on Lyme ... I agree fully, and suggest that you find a Lyme specialist. There is a war going on in the medical community, in which any MD who treats Lyme aggressively and for an extended period of time is considered a quack by more 'mainstream' docs.
The reason seems to be that when Lyme was first recognized a couple of decades ago, the initial docs to study it (in and around Lyme, CT, hence the name of the ailment) were ID docs and rheumatologists ... those early docs are STILL around, and are high up in the hierarchy of medicine. That would be okay except that these docs and their specialty areas have frozen in time their early understandings of Lyme and what it is and how to diagnose and treat it: in a nutshell, they view it as hard to get and easy to cure.
Sadly, Lyme is an 'emerging disease' that has spread through out North America and elsewhere, in a variety of strains, and the tests and treatment are still in disarray. There is, thankfully, a separate group that has kept doing research and has progressed substantially on the diagnosis and treatment front -- ILADS is their main voluntary group, short for International Lyme and Associated Diseases Society, website at ILADS.org.
Lyme specialists can be any discipline within medicine, but often are NOT found within the ranks of ID docs and rheumies. We patients refer to Lyme specialists who 'get' the broader ideas of Lyme as LLMDs, shorthand for Lyme-Literate MDs. That is not an official title, and LLMDs don't call themselves that.
But in your situation, I'd find myself an LLMD for a second opinion. You do not need to tell your other docs that you are consulting an LLMD, because it too often happens that nonLLMDs will refuse to treat patients who consult LLMDs, on the theory that the LLMDs are committing malpractice by the tests they use (often from a lab called IGeneX) and the length of antibiotic treatment they usually prescribe (months, not weeks).
[[fwi ---- Lyme bacteria have a very slow reproductive cycle, similar to that of tuberculosis and leprosy, and it is when dividing that the bacteria are most susceptible to being killed by antibiotics. TB is commonly treated with antibiotics for ~18 months minimum, and Lyme is similar in that way to TB ... but a nonLLMD does not, for reasons I do not understand, see the parallel.]]
That is why I sent you the links and data above ... because even good and well-meaning regular (nonLLMD) docs do not have Lyme on their radar screens ... except perhaps for ophthalmologists. I mumbled something to my eye doc about being on antibiotics for Lyme disease, and he perked right up (instead of sneering) and took it verrrry seriously.
I can't say all ophths take it that seriously, but they may. In any event, that's the long story of why I sent you the different links.
In your situation, I would find an ophth who understands Lyme and start there, working backwards to a more general doc to handle your overall diagnosis and treatment.
You say your MRIs are showing spots in your brain, but an MRI cannot (to my understanding) differentiate between multiple sclerosis spots and Lyme spots in the brain. They both show up fuzzy on the images.
An LLMD is more likely to use a SPECT scan, which shows areas of low blood flow in the brain, not looking for lesions like MS. So that's another reason to see a Lyme specialist. So ... it's possible you don't have MS. But I'm not medically trained, but wanted to flag that issue for you. (Or maybe you have both Lyme AND MS, but if so, go buy a lottery ticket, given the odds of having both.)
But back to the beginning: your eyesight needs attention, and starting with an ophthalmologist to address your eye condition is what I would do rather than swim upstream through an ID doc's office, which could take forever and possible lead nowhere, given ID doc's tendencies not to take Lyme seriously. Esp since you are already told you have MS.
In your situation, I would find an ophthalmologist straight away, and then work backwards from there. Eyes first! And then the ophth may be able to recommend an LLMD for your more general care.
Your ID doc may be broadminded, but may not be. You might first want to inquire of the ID doc 'What about Lyme as a cause for my eye problems?' and then if you get blown off, find an LLMD on the sly.
You may get lucky with the ID doc, tho, and s/he may be in the closet and really be an LLMD.
I know, this political situation sounds crazy, and it is, but it's for real.
Sorry if this is confusing. Let us know how you do -- hang in there --
Welcome to the Lyme forum!
I don't know much about the visual problems you describe, although I have had some blurry vision, floaters, and sparkles. The gnat-like dark floaters in my peripheral vision were really distracting. I kept think a bug just went zooming past. All of these have gotten better in the last 3 months of treatment.
Jackie is a wonderful source of guidance and information! I am not particularly useful on this subject, but I thought I would ask if are getting treatment for your chronic Lyme. What does your ID doc say about your condition? It is rare for an ID doc to acknowledge chronic Lyme.
I don't know much about the visual problems you describe, although I have had some blurry vision, floaters, and sparkles. The gnat-like dark floaters in my peripheral vision were really distracting. I kept think a bug just went zooming past. All of these have gotten better in the last 3 months of treatment.
Jackie is a wonderful source of guidance and information! I am not particularly useful on this subject, but I thought I would ask if are getting treatment for your chronic Lyme. What does your ID doc say about your condition? It is rare for an ID doc to acknowledge chronic Lyme.
I had made a decision this morning to request a brain MRI from my doctor. I also have MS and had been getting brain MRI's yearly until I developed Chronic Lyme 5 years ago. I'll let you know how it turns out. Thank you so much for the advice and concern.
Jackie, I'm overwhelmed with the quality of information you forwarded. My Infectious disease physician has been greatly concerned about my visual disturbances, but your guidance trumps his. Thank you so much! Tomorrow I will get on this ASAP. I'll let you know the outcome. I'm very greatful.
I have chronic Lyme and also have had the visual problems. I have barts which causes many neuro symptoms. My Brain MRI showed problems. I would be interested to know if you ever had a brain scan? At first my visual problems started out as what my LLMD calls Lyme Blindness, I would actually not be able to read or watch TV and I sometimes passed out afterwards. I also have had the color problems.
Did your LLMD have any guidance on the subject? You very well could have this condition that the eye doc says but I would get another opinion before letting them laser your eyes especially if it could be related to Lyme or a co-infection
Did your LLMD have any guidance on the subject? You very well could have this condition that the eye doc says but I would get another opinion before letting them laser your eyes especially if it could be related to Lyme or a co-infection
Sorry to hear what you are dealing with -- Ophthalmologists seem to be one of the few specialties that overall take Lyme seriously. If you don't feel like your ophth. is in the 'takes it seriously' group, then I'd find another one for a second opinion, esp. since it sounds like you may have other symptoms/conditions complicating the diagnosis.
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Send an email to
contact [at] ILADS [dot] org
and tell them you need an ophthalmologist in whatever part of Florida you are in or can get to. ILADS is the main group for Lyme specialists, and they give referrals at that email address.
==========================
Also:
I just googled:
lyme ophthalmologist florida
and found a number of leads, some of which are below:
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Bascom Palmer Eye Institute -- Florida locations
Here's an abstract of an old article (21 years ago!) that mentions the Bascom Palmer Eye Institute, and its interest in Lyme. 21 years ago there was very little interest in Lyme, so these guys were ahead of the game. Their current website says they have 4 locations in Florida, and I would look into a consultation there if you have not done so already:
J Clin Neuroophthalmol. 1990 Dec;10(4):255-60.
The Bascom Palmer Eye Institute Lyme/syphilis survey.
Smith JL, Crumpton BC, Hummer J.
Source
Bascom Palmer Eye Institute, Department of Ophthalmology, University of Miami School of Medicine, Florida.
Abstract
Serologic screening of patients for Lyme borreliosis began at the Bascom Palmer Eye Institute (BPEI) in September 1987. This report reviews the data on 641 sera from that date up to January 1, 1990. Initially only immunofluorescent (IFA) IgG and IgM titers were obtained. Because of increasing numbers of borderline and positive IFA tests, a Lyme enzyme linked immunosorbent assay (ELISA) was added in April 1988. Also, because of significant serologic cross reactivity in patients exposed to Treponema pallidum, rapid plasma reagin (RPR) and fluorescent treponemal antibody absorption (FTA-ABS) tests were added to the serologic screening panel. Of all sera tested, 10% showed reactive RPR tests and 22% showed reactive FTA-ABS tests. Lyme IFA IgG titers were greater than or equal to 1:64 in 17% of the sera, and Lyme ELISA tests were greater than 1.25 in 15% of the sera. Our experience agrees with reports that serum RPR or VDRL tests are nonreactive in Lyme borreliosis, and that false positive FTA-ABS tests can occur in Lyme borreliosis. The importance of getting all four tests--RPR, FTA-ABS, Lyme IFA IgG and IgM, and Lyme ELISA--in all patients suspected of spirochetal disease is emphasized.
PMID: 2150843 [PubMed - indexed for MEDLINE]
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Gerald Zaidman MD:
There is an ophthalmologist in or around Valhalla NY, Gerald Zaidman, who seems to have been writing on Lyme disease for many years and seems to be pretty well known in the field from what I see online. You might call his office and see if he can recommend someone in Florida near you. Docs are sometimes aware of others who share their views on such things.
Google his name and you'll find him.
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here's a bit from an article online:
http://www.healthguidance.org/entry/10113/1/Eye-Disorders-Eye-Ache-Coloured-Vision.html
Coloured Vision (Chromatopsia)
It can be extremely unnerving to get up in the morning with coloured vision. There are various causes of the vision getting coloured. However, mostly they are of a short duration and usually a treatment of the causative condition or a discontinuation of some drug is sufficient. The following are only examples to show how even frequently-used drugs can cause this remarkable change.
Barbiturates (sleeping drugs): yellow vision
Streptomycin (antibiotic): yellow vision
===>>> Griseofulvin (anti fungal drug): green vision
=====================================
Your current docs may be on top of the situation, but maybe another opinion is worth having.
Best wishes to you --- let us know how you do, okay?
=======================================
Send an email to
contact [at] ILADS [dot] org
and tell them you need an ophthalmologist in whatever part of Florida you are in or can get to. ILADS is the main group for Lyme specialists, and they give referrals at that email address.
==========================
Also:
I just googled:
lyme ophthalmologist florida
and found a number of leads, some of which are below:
======================================
Bascom Palmer Eye Institute -- Florida locations
Here's an abstract of an old article (21 years ago!) that mentions the Bascom Palmer Eye Institute, and its interest in Lyme. 21 years ago there was very little interest in Lyme, so these guys were ahead of the game. Their current website says they have 4 locations in Florida, and I would look into a consultation there if you have not done so already:
J Clin Neuroophthalmol. 1990 Dec;10(4):255-60.
The Bascom Palmer Eye Institute Lyme/syphilis survey.
Smith JL, Crumpton BC, Hummer J.
Source
Bascom Palmer Eye Institute, Department of Ophthalmology, University of Miami School of Medicine, Florida.
Abstract
Serologic screening of patients for Lyme borreliosis began at the Bascom Palmer Eye Institute (BPEI) in September 1987. This report reviews the data on 641 sera from that date up to January 1, 1990. Initially only immunofluorescent (IFA) IgG and IgM titers were obtained. Because of increasing numbers of borderline and positive IFA tests, a Lyme enzyme linked immunosorbent assay (ELISA) was added in April 1988. Also, because of significant serologic cross reactivity in patients exposed to Treponema pallidum, rapid plasma reagin (RPR) and fluorescent treponemal antibody absorption (FTA-ABS) tests were added to the serologic screening panel. Of all sera tested, 10% showed reactive RPR tests and 22% showed reactive FTA-ABS tests. Lyme IFA IgG titers were greater than or equal to 1:64 in 17% of the sera, and Lyme ELISA tests were greater than 1.25 in 15% of the sera. Our experience agrees with reports that serum RPR or VDRL tests are nonreactive in Lyme borreliosis, and that false positive FTA-ABS tests can occur in Lyme borreliosis. The importance of getting all four tests--RPR, FTA-ABS, Lyme IFA IgG and IgM, and Lyme ELISA--in all patients suspected of spirochetal disease is emphasized.
PMID: 2150843 [PubMed - indexed for MEDLINE]
================================================
Gerald Zaidman MD:
There is an ophthalmologist in or around Valhalla NY, Gerald Zaidman, who seems to have been writing on Lyme disease for many years and seems to be pretty well known in the field from what I see online. You might call his office and see if he can recommend someone in Florida near you. Docs are sometimes aware of others who share their views on such things.
Google his name and you'll find him.
================================================
here's a bit from an article online:
http://www.healthguidance.org/entry/10113/1/Eye-Disorders-Eye-Ache-Coloured-Vision.html
Coloured Vision (Chromatopsia)
It can be extremely unnerving to get up in the morning with coloured vision. There are various causes of the vision getting coloured. However, mostly they are of a short duration and usually a treatment of the causative condition or a discontinuation of some drug is sufficient. The following are only examples to show how even frequently-used drugs can cause this remarkable change.
Barbiturates (sleeping drugs): yellow vision
Streptomycin (antibiotic): yellow vision
===>>> Griseofulvin (anti fungal drug): green vision
=====================================
Your current docs may be on top of the situation, but maybe another opinion is worth having.
Best wishes to you --- let us know how you do, okay?
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