Hi everyone! I'm posting this here as I've been positively diagnosed with Lyme by IGeneX and am wondering if this could be related...
Anyway I'm freaking out right now as I woke up a little while ago to use the restroom and noticed I was seeing things like someone flashed me in the eyes with a camera flash. I stayed up a little while because it was scaring me and I wanted to wait for it to go away. But it just started to get worse and worse over a 15 minute period to the point where I was seeing tons of strange glowing lines, flashes, and a huge amount of visual snow like bad reception on a TV. I could still see but there was so much "interference" it made it hard. I had an episode like this back in the late summer and went to the ER because I'd never had it before and it scared me a lot. They said they didn't find anything wrong and it could be just a migraine "aura". However I had no headache and didn't develop one just like this time.
Its since subsided but it lasted well over 30 minutes and was worse than last time. What could this be am I having a stroke or something :((? It just freaks me out to feel like I'm suddenly losing my vision. Could this be yet another strange symptom of Lyme? Perhaps a neurological symptom or could it simply be a migraine aura without the headache? Seems strange that I don't get a headache with a "migraine aura". Has anyone experienced this before?
I'm just so sick of all these strange things I'm experiencing and always feeling sick and tired :(. I'm trying to be more confident in my health but its hard when all this stuff keeps happening :/. Anyway thank you for your help I'm going to try to not worry and get back to sleep.
You are not alone in this. Of course I would check with my doctor first because it could be a migraine aura but it sounds like what my LLMD calls "Lyme blindness" many of my Lyme friends get this and I get it.
Yes, it is very scary, especially the first couple of times but it is only temporary. Most of my friends who get it, as well as myself, also have Bartonella with lesions on our brains.
I can't remember if you were tested for co-infections because Lyme and Bart's causes brain fog. If not, you should be because Bart's is a different antibiotic then Lyme. Bart's causes many, Neuro symptoms and for me is harder to fight then even the Lyme.
Of all the docs I've seen, the only one who took Lyme as seriously as my LLMD was my *ophthalmologist*, an MD who specializes in eyes.
Ophthalmologists seem to be more independent in their thinking, perhaps because they are in an area that is theirs alone and they don't have to contend with infectious disease docs, for example, trying to tell them otherwise.
I would definitely see an ophthalomologist and not put it off.
This is from emedicine. medscape. com / article / 1202521-overview#aw2aab6b5, but fair warning, their treatment guidelines aren't what an LLMD would do. This is typical of most docs and big organizations like the people who publish medscape -- they stay with what they consider the standard (if outdated or questionable) treatment approaches, which in medicine is usually not a bad thing, but in Lyme has outlived the data.
So ... I've pasted this here only for the description of effects Lyme can have on the eyes. The progression of complications is of concern, which is why I would see an ophthalmologist sooner rather than later.
"Ophthalmic Aspects of Lyme Disease Overview of Lyme Disease"
--- Ocular manifestations of stage 1 disease
In stage 1 Lyme disease, the ocular manifestations are conjunctivitis and photophobia. These symptoms are mild and transient, and ophthalmologists usually are not consulted.
--- Ocular manifestations of stage 2 disease
During stage 2 Lyme disease, significant ophthalmic complications first appear. The most common are various neuro-ophthalmologic signs.
Typically, the patient may first present with cranial nerve VII palsy (Bell palsy). Some patients may present with the triad of Lyme neuroborreliosis consisting of cranial nerve palsy, meningitis, and radiculopathy.[7, 8, 9, 10]
Blurred vision also can be noted during stage 2, secondary to papilledema, optic atrophy, optic or retrobulbar neuritis, or pseudotumor cerebri. Optic nerve disease may be unilateral or bilateral and solitary or associated with other neurologic or neuro-ophthalmologic manifestations. Some evidence exists that children are more predisposed to optic nerve disease than adults.
--- Ocular manifestations of late stage 2 and stage 3 disease
In late stage 2 or stage 3 Lyme disease, most of the severe ocular manifestations of the disease are seen. These include episcleritis, symblepharon, keratitis, iritis, posterior or intermediate uveitis, pars planitis, vitreitis, chorioretinitis, exudative retinal detachment, retinal pigment epithelial detachment, cystoid macular edema, branch artery occlusion, retinal vasculitis, orbital myositis, and cranial nerve palsies. Of this group, keratitis, vitreitis, and pars planitis are the most common.
The keratitis usually is a bilateral, patchy, nummular stromal keratitis. Posterior segment inflammatory disease generally presents as a bilateral pars planitis associated with granulomatous iritis and vitreitis. Many of these patients also have granulomatous keratic precipitates and posterior synechiae.
I had the same experienc--camera flash in the eye and white blindness. It was not fun for me because I am deaf, and all of suddenly I also cant see.
Sometimes I experience continuous after-image flashes but I can still see.
Once in while I would wake up everything look blur, and my glasses doesn't make a difference. I also had photosensitivity. They do get better with treatment.
My eyes itself turns out to be fine. The problem originates in the brain. In fact I am being referred for evaluation to assess the extent of visual processing difficulties, and also for cognitive remediation.
The bottomline is Lyme and bartonella are known to wreck havoc on vision, including visual processing (part of cognitive functions) in the brain. Like mojogal I have white matter lesions.
If they are ILADS-related, chances are they are up to date on this stuff. But I would guess that 'cognitive' is different from purely visual, tho of course they overlap at some level. It's beyond my level of understanding, tho.
I would not put LLMDs names here, just as a rule of thumb. If someone wants/needs to know the names, they can PM you through this site.
Thank you all :) its good too know Lyme could cause this guess I could chalk it up to another strange symptoms of Lyme :/.
Hopefully it doesn't happen again. My sister actually gets migraines so I'd also not be surprised if it really isn't just a migraine aura but being me of course I don't ever get things by the book... ever :/ and I didn't get a headache with it maybe a pain here and there but not a headache. So that's kinda strange. That's why it freaked me out more cause I couldn't just think to myself "oh I have a headache and an aura so I have a migraine."
I also didn't know you could get brain lesions from Lyme? Are they dangerous? I mean that doesn't sound good do they go away if I were to end up getting them from chronic Lyme cause my appointment is still over 2 months away?
Anyway thank you all for your help that puts my mind at ease that I wasn't having a stroke or something and that it could really be caused by Lyme. Its really quite amazing and unfortunate that Lyme can cause such a wide variety of symptoms.
As for brain lesions, they can go away, sometimes they remains. One of my LLMD explained that lesions can be just scar, but brain can functiion normally again. Here is an analogy. I have visible scars from my left wrist reconstruction surgery but my left wrist and hand functions normal.
The lesions are not from Lyme per say but from one of its co- infections, Bartonella.. Since you have the " Lyme blindness" I think you should get an igeneX co-infection test because if you do have Bart's, you will need a new set of antibiotics.
The brain lesions can also cause reduced motor function. I could hardly walk and couldn't open the fridge door at the start of Bart's.
Stargazer is correct, the can go away and just leave scars in your brain.
If within those 2 months if you experience any more funky things, perhaps your LLMD can get you in early?
I didn't have bartonella, so don't have anything specific to contribute on that point, but would encourage you *not* to freak at the idea that there could be some sort of lesion, scar, mark, whatever as a result of illness. I like Star's comment about her wrist working just fine despite a scar. The body is an amazing thing, and the brain incredible in its 'plasticity' -- the ability to re-route and re-wire after damage.
If you're up for it, there's a fairly readable piece on wikipedia under 'neuroplasticity', the first two paragraphs of which are:
Neuroplasticity (from neural - pertaining to the nerves and/or brain and plastic - moldable or changeable in structure), also known as brain plasticity, refers to changes in neural pathways and synapses which are due to changes in behavior, environment and neural processes, as well as changes resulting from bodily injury. Neuroplasticity has replaced the formerly-held position that the brain is a physiologically static organ, and explores how - and in which ways - the brain changes throughout life.
Neuroplasticity occurs on a variety of levels, ranging from cellular changes due to learning, to large-scale changes involved in cortical remapping in response to injury. The role of neuroplasticity is widely recognized in healthy development, learning, memory, and recovery from brain damage. During most of the 20th century, the consensus among neuroscientists was that brain structure is relatively immutable after a critical period during early childhood. This belief has been challenged by findings revealing that many aspects of the brain remain plastic even into adulthood.
I think of it like the public works guys being able to route traffic around a damaged bridge -- there are others ways to get from A to B than over just one bridge ... and at some point, that bridge may be fixed and be usable again ... but if it's not, the other bridges can carry the extra traffic and even be widened and strengthened.
Okay, enough metaphor for the day. But don't worry -- partly because I don't think it's necessary to worry, partly because it won't do any good to worry, and partly because it's just Lyme messing with your head -- so don't let it get the better of you. You're doing well to work your way through these concerns, to surface them, talk about them, read up on them, and come to terms -- that way lies peace of mind, and the defeat of Lyme.
Google "painless migraine" or "silent migraine" and you'll a lot of info which I believe is relevant to these headaches when caused by lyme, as well as to people who don't have lyme.
They are partly caused when lyme bacteria start doing the wild fandango inside your brain. Lyme loves attacking nerve cells.
The best thing you can do to make them go away is to heat your head up!!! This increases blod flow and lyme hates heat. You may get some people, even doctors, suggesting you use an ice pack but that is the worst thing you could possibly do as it encourages the lyme bacteria to breed.
I sometimes just make a hot water bottle and lay on it as a pillow but I also use a cushion, filled with rice or something, that I heat in the microwave. It's long and thin so I can basically wrap it around my head.
There's also a drug called lyrica which acts on nerves., It's usually used as a painkiller but for people with lyme disease or bartonella it calms down a lot of nerve problems including itching, tingling, pins and needles and this nasty visual thing. So if you get more of this type of painless migraine then I'd talk to teh doc about getting some.
I passed out and then went completely blind for 24 hours from Lyme or one of the confections. I also threw up 20 times very violently just before it happened. I am in the hospital recovering for the past 5 days. After being completely blind, my vision slowly came back but with lingering images, letters changing before my eyes, cartoon like images racing through my brain when I tried to sleep, the whole wall in front of me having bright images of wall paper designs appear that weren't there. I am very scared for this to happen again. I have been given Rochephin and Vancomycin intravenously since being in the hospital. The doctors here think they are treating a potential heart infection I might have. They are not Lyme literate. I am lucky the drugs they are giving me are also good for treating Lyme and Bart.
Welcome to MedHelp -- but so very sorry to hear what you are going through.
There are many, many excellent Lyme physicians in NYC and the surrounding areas -- if you go to the ILADS website, there is a referral function that can help you find a doc nearby.
We try NOT to put the names of Lyme specialists here in the open, because in some states, the medical boards don't much believe in the serious nature of Lyme, and so they try to crack down on Lyme docs who treat Lyme aggressively. Using private messages through this system will keep the docs' names private, and allows you to communicate under your lisaanday name here, so everyone is protected but the information needed can be passed along in private messages through this site.
Best wishes! Let us know if we can help further --
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