Aa
strange eye question
Hi everyone..I'm still having the same symptoms but still able to live my life the same way.
I have an odd question and I hope it makes sense.
I have a eye problem where I can see my nose all the time. This became noticable at the onset of my tingling/twitching, ect. I wear glasses and I also notice when I look to my extreme right or left there is a tiny area where I see double. It seems to happen because of the fact that I can see my nose and the bridge of my nose when I look to the side. Its like my farthest eye from where I'm looking as trouble seeing past the bridge of my nose so it kind of creates a mild double vision. It's really strange but I'm not too worried about it..I don't think its normal...haha.
Anyways, any thoughts? Anyone experience this? I have become used to the eye/visual oddities but I haven't brought this up yet.
-Sarah
I have an odd question and I hope it makes sense.
I have a eye problem where I can see my nose all the time. This became noticable at the onset of my tingling/twitching, ect. I wear glasses and I also notice when I look to my extreme right or left there is a tiny area where I see double. It seems to happen because of the fact that I can see my nose and the bridge of my nose when I look to the side. Its like my farthest eye from where I'm looking as trouble seeing past the bridge of my nose so it kind of creates a mild double vision. It's really strange but I'm not too worried about it..I don't think its normal...haha.
Anyways, any thoughts? Anyone experience this? I have become used to the eye/visual oddities but I haven't brought this up yet.
-Sarah
It's not crazy at all. I've never seen a tick on me, either! As an adult, I (based on my own preferences) avoid the outdoors, I don't even do picnics. I was living in West Philadelphia when this started, not exactly a forested area. And while it is infested, it's not with ticks!
OK, I think I recall you mentioning your MRI results before, and your neuro's unlikely response. In my case, the MRI did show lesions, and my neuro said that Lyme can't do that. Just goes to show how much universal agreement is lacking in terms of Lyme. (Really though, in all of my research, I've read that a clear MRI can rule out MS in most cases, but it's not a standard diagnostic tool for Lyme.)
The state of affairs with Lyme is such that in the absence of a smoking gun (embedded tick or bull's eye rash, blatantly positive serology), you will not likely get a diagnosis and/or adequate treatment unless you seek out an LLMD. I've never had another serious illness, but I do think Lyme poses certain unique challenges in that so much of the burden is on the patient.
All of my doctors (several specialists, PCP) told me I didn't have it, even though I asked about it here and there. I quite honestly felt like a nut at first for going to an LLMD, and joked to those close to me who knew my situation that I felt as though I was joining a cult. But I had no alternative, as other doctors would not even allow me to do a trial course of antibiotics. (And it's not like I was resorting to that idea hastily, this was about 1.5 years into my obvious illness and after a million tests to rule things out.)
LLMD's are often expensive. I know you've mentioned before that you are a student, so that might be a big obstacle for you. But since you have some time (in that you're still up and running!) you may be lucky and be able to find one that takes insurance, especially if you're on the East coast where there are more in practice.
For me, the initial appointment and some of the specialty testing (also not covered) were expensive, but the followup and oral treatment (IV can be $$$) is not that bad. I guess I eat out less, but ya know, priorities.
I don't know if MedHelp will bleep this link or not, but it has some advice on how to do your search. If it is bleeped, just google "how to find an LLMD" and it's the first hit. I found mine through the Lyme Disease Association Referral service. I chose a physician who is an ILADS member, which I'd also suggest. The site promotes a book that I've never read, so no comment on that.
http://www.chroniclymedisease.com/llmd-referrals
I started to get noticeably sick (I put it that way since I think I had a quiet infection for longer) literally within 2-3 days of completing my last degree. Just over a year and a half later, I had to reduce my work to part time, though my productivity doesn't even live up to that standard. It has thrown a pretty serious wrench in the works. Because of the delay in my treatment (not to mention the horrible effects of a misguided steroid treatment), I'm still very far below my regular level of functioning at 6 months into treatment!
I can blame doctors I saw for a lot of my current situation (and I do). But also, I waited a long time (>6 months) to even go to a doctor (not my LLMD, just my primary physician) because I was still fully functional and found my symptoms to just be curious, not harmful.
So this has taken a lot out of me, and I have a lot of regret!
You need to find your own path and make sure that you're comfortable with what you decide to do. And no, not everything is Lyme disease and we can't be sure that you have it. I just hope that whatever it is, you hunt it down and catch it before it takes over more of your life.
(Stepping off of soapbox, for now...)
OK, I think I recall you mentioning your MRI results before, and your neuro's unlikely response. In my case, the MRI did show lesions, and my neuro said that Lyme can't do that. Just goes to show how much universal agreement is lacking in terms of Lyme. (Really though, in all of my research, I've read that a clear MRI can rule out MS in most cases, but it's not a standard diagnostic tool for Lyme.)
The state of affairs with Lyme is such that in the absence of a smoking gun (embedded tick or bull's eye rash, blatantly positive serology), you will not likely get a diagnosis and/or adequate treatment unless you seek out an LLMD. I've never had another serious illness, but I do think Lyme poses certain unique challenges in that so much of the burden is on the patient.
All of my doctors (several specialists, PCP) told me I didn't have it, even though I asked about it here and there. I quite honestly felt like a nut at first for going to an LLMD, and joked to those close to me who knew my situation that I felt as though I was joining a cult. But I had no alternative, as other doctors would not even allow me to do a trial course of antibiotics. (And it's not like I was resorting to that idea hastily, this was about 1.5 years into my obvious illness and after a million tests to rule things out.)
LLMD's are often expensive. I know you've mentioned before that you are a student, so that might be a big obstacle for you. But since you have some time (in that you're still up and running!) you may be lucky and be able to find one that takes insurance, especially if you're on the East coast where there are more in practice.
For me, the initial appointment and some of the specialty testing (also not covered) were expensive, but the followup and oral treatment (IV can be $$$) is not that bad. I guess I eat out less, but ya know, priorities.
I don't know if MedHelp will bleep this link or not, but it has some advice on how to do your search. If it is bleeped, just google "how to find an LLMD" and it's the first hit. I found mine through the Lyme Disease Association Referral service. I chose a physician who is an ILADS member, which I'd also suggest. The site promotes a book that I've never read, so no comment on that.
http://www.chroniclymedisease.com/llmd-referrals
I started to get noticeably sick (I put it that way since I think I had a quiet infection for longer) literally within 2-3 days of completing my last degree. Just over a year and a half later, I had to reduce my work to part time, though my productivity doesn't even live up to that standard. It has thrown a pretty serious wrench in the works. Because of the delay in my treatment (not to mention the horrible effects of a misguided steroid treatment), I'm still very far below my regular level of functioning at 6 months into treatment!
I can blame doctors I saw for a lot of my current situation (and I do). But also, I waited a long time (>6 months) to even go to a doctor (not my LLMD, just my primary physician) because I was still fully functional and found my symptoms to just be curious, not harmful.
So this has taken a lot out of me, and I have a lot of regret!
You need to find your own path and make sure that you're comfortable with what you decide to do. And no, not everything is Lyme disease and we can't be sure that you have it. I just hope that whatever it is, you hunt it down and catch it before it takes over more of your life.
(Stepping off of soapbox, for now...)
I think I would be better off if I go to an LLMD instead of my general doctor. I just don't believe that I have lyme because I have NEVER noticed a tic on me..let alone a rash. But from reading on this forum I have read that a rash ins't necessary. I just wish there was some visible evidence so I would feel better about going to an LLMD. I know, its crazy reasoning but there you have it.
After saying this, I feel better about seeking an LLMD now after all the great advice I have gotten here. I just read in another forum that a bunch of people have the nose shadow thing. They describe it exactly how I did as well as some other issues that I thought had nothing to do with lyme. I guess it's time to look for an LLMD. I have no idea how to go about this.. I live in Southern California so I doubt there are any where I live.
Any advice where to/how to look for an LLMD?
Thanks
After saying this, I feel better about seeking an LLMD now after all the great advice I have gotten here. I just read in another forum that a bunch of people have the nose shadow thing. They describe it exactly how I did as well as some other issues that I thought had nothing to do with lyme. I guess it's time to look for an LLMD. I have no idea how to go about this.. I live in Southern California so I doubt there are any where I live.
Any advice where to/how to look for an LLMD?
Thanks
Good, glad to hear your eyes are in good shape!
Have you considered consulting an LLMD? It seems I hear too often here about non-LLMDs running the basic Lyme tests and interpreting them according to CDC/IDSA guidelines, which are notoriously imprecise, resulting in potentially incorrect diagnoses.
Before finding my way to an LLMD, I went through about 20 highly trained and highly experienced MDs in various fields (infectious disease, endocrinology, emergency medicine, internal medicine, ear/nose/throat, neurology, etc.) over a period of about 3 years.
One of the endocrinologists, a very kindly professor at a first-rate university hospital who wanted to diagnose me with chronic fatigue, finally ran a Lyme test on me, but interpreted it according to CDC/IDSA guidelines -- as a negative result. I took the test result to an LLMD and was, after additional testing and evaluation, diagnosed as having both Lyme and a co-infection, and I began treatment at last.
Treatment has not been easy in some ways, but definitely worthwhile. I don't regret the bumps in the treatment road, because the road is taking back to my real life. I would encourage you to find an LLMD as soon as you can; your regular dr doesn't have to know you are doing that, if you think s/he might be offended and damage the relationship there.
Let us all know if we can help you find someone in your area.
Have you considered consulting an LLMD? It seems I hear too often here about non-LLMDs running the basic Lyme tests and interpreting them according to CDC/IDSA guidelines, which are notoriously imprecise, resulting in potentially incorrect diagnoses.
Before finding my way to an LLMD, I went through about 20 highly trained and highly experienced MDs in various fields (infectious disease, endocrinology, emergency medicine, internal medicine, ear/nose/throat, neurology, etc.) over a period of about 3 years.
One of the endocrinologists, a very kindly professor at a first-rate university hospital who wanted to diagnose me with chronic fatigue, finally ran a Lyme test on me, but interpreted it according to CDC/IDSA guidelines -- as a negative result. I took the test result to an LLMD and was, after additional testing and evaluation, diagnosed as having both Lyme and a co-infection, and I began treatment at last.
Treatment has not been easy in some ways, but definitely worthwhile. I don't regret the bumps in the treatment road, because the road is taking back to my real life. I would encourage you to find an LLMD as soon as you can; your regular dr doesn't have to know you are doing that, if you think s/he might be offended and damage the relationship there.
Let us all know if we can help you find someone in your area.
wonko: I do agree with you on what you are saying. I asked my neuro to test me because everything so far has been COMPLETELY normal..mri, evoked potentials, extensive normal neuro exams except for a decreased reflex in my leg, bloodwork (no lyme test though). When i went back to him for a follow-up and I mentioned lyme, he told me he only tests for it if I have lesions and since I don't he isn't going to test me. Some days I feel fine and other days I have more tingling, all-over twithcing and the halos/starbursts/visual static are ALWAYS there. It is getting harder to workout because my shins start to hurt and I still have bad right foot pain in the mornings. I also get heart pounding at night. It is fusterating because everything so far is normal. I am planning to go to my regular doctor to ask him for a lyme test but when I went to see him for my pounding heart, he told me it was anxiety..EKG and blood pressure normal. So I hope he doesn't tell me this when I mention my symptoms. I will give that a try very soon.
JackieCalifornia: I have had my eyes looked at by an opthamologist and he declared everything to be normal. I also had a VEP which was normal so outwardly my eyes seem to be fine...
Normal tests are great but I need to know what is going on..hopefully a lyme test will help with that.
JackieCalifornia: I have had my eyes looked at by an opthamologist and he declared everything to be normal. I also had a VEP which was normal so outwardly my eyes seem to be fine...
Normal tests are great but I need to know what is going on..hopefully a lyme test will help with that.
No, I don't have that particular effect, and my eyes have not been severely effected by Lyme, but I am absolutely with Wonko in suggesting that you get your eyes attended to very soon, by an ophthalmologist (MD specializing in eyes).
Optometrists are good for some things, but Lyme is a medical condition that needs treatment by an MD -- please don't delay!
Optometrists are good for some things, but Lyme is a medical condition that needs treatment by an MD -- please don't delay!
I'm not sure I can relate to those exact eye symptoms, but I in general have had eye involvement. My mild double vision is one area that has improved a good deal, without backslides, since starting treatment. I still get occasional eye pain and frequent flashing lights.
What I really want to say though (and yes, cue the broken record) is that you are on thin ice. You may be healthy enough to go about normal activities for now, but ignoring the problem is nothing short of a recipe for disaster. I forget the details of what you've shared, but I know you've mentioned a lot of symptoms. Even if they are not severe, the variety indicates that your Lyme (if you in fact have it, which of course I can't determine) has spread and is therefore not in the early, more treatable stage.
Should you suffer an unrelated illness, or a trauma (car accident, etc), personal crisis, or any other malady, it could give an underlying infection the opportunity to bloom. This is what happened to me. I believe patsy10, our community leader, was in a situation where her illness was in remission but came back after a trauma.
Anyway, I don't mean to lecture, but you have an opportunity that I missed, so I can't help myself!
Take care and be well.
What I really want to say though (and yes, cue the broken record) is that you are on thin ice. You may be healthy enough to go about normal activities for now, but ignoring the problem is nothing short of a recipe for disaster. I forget the details of what you've shared, but I know you've mentioned a lot of symptoms. Even if they are not severe, the variety indicates that your Lyme (if you in fact have it, which of course I can't determine) has spread and is therefore not in the early, more treatable stage.
Should you suffer an unrelated illness, or a trauma (car accident, etc), personal crisis, or any other malady, it could give an underlying infection the opportunity to bloom. This is what happened to me. I believe patsy10, our community leader, was in a situation where her illness was in remission but came back after a trauma.
Anyway, I don't mean to lecture, but you have an opportunity that I missed, so I can't help myself!
Take care and be well.
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