I am very curious to hear how many with Neuro. Lyme have flashing lights in their side vision?
I had Neuro Lyme treated with IV in 2005 but ever since I have expereinced flashing lights in my side vision - somedays chronic. I have alot of trigger but somedays they can be there all day long...
I also have a rare brain condition called Chiari Malformation (cerebellum herniates into the spinal cord) which restricts CSF flow and can occasionally cause this and other Neuro lyme symptoms as well.
When I see my LLMD she say the lights are from Lyme. When I see my Neurosurgeon (I have had neurosurgery in attempts to correct the chairi malformation but still have the headaches and vision problems..)he says it is from the restricted CSF flow casued by the cerebellum herniating into the spinal cord.
So, I am forever trying to understand what is a symtom of possible under-treated Neuro Lyme and what is a symtom of this structural /congential issue that I have.
Flashing ligths with Neuro-Lyme anyone?
Posts: 376 | From New Jersey | Registered: Jun 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Can't say that I've noticed any flashing lights.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sometimes, I'll get a sort of penlight flashlight sort of flash - just on and off.
Mostly, I get the flickering stuff to the side all the time (both eyes), worse after using computer or watching TV, or being in bright light.
some of this is from inner ear connection, too. It is hard to sort it all out but magnesium and fish oil help. Rest helps the most.
I think BOTH your doctors can be right. Rarely does one symptom ever seem to have just one cause when lyme (& Chiari) is involved. Bottom line, though, when the infection is finally cleared, many symptoms clear, too.
What are you doing now to treat the neuro lyme? Keeping after the infection is vital. And, is your liver protected to protect your eyes?
Are you taking good herbs and vitamins for your eyes? Whatever the cause, there are some things you can do to help provide nutrition to the cells of both eyes and brain.
And, while so much of this is bothersome or seemingly w/o explanation, there are times when flashing lights require immediate evaluation by a good eye doctor. There are other things besides lyme. The book below will help explain more.
--
Are you getting gentle cranial-sacral therapy? That can be helpful. Gentle, though, never snap-n-crack stuff.
Myofascial therapy can help soften scare tissue from surgery. So can an herb called Salvia, if I recall correctly.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Magnesium supplementation to 2,000 mg a day (or just to bowel tolerance). This calms the nerve firings. The links above will round out the supplement suggestions.
In addition to carrots, tomatoes and lots of greens, Goji berries are excellent for eye nutrition:
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
My brother who has Lyme has had flashing lights. He's had a lot of eye problems with Lyme and while a lot of his symptoms have improved with abx....the vision issues have not. He is a professional photographer and is a huge concern for him. He is only 32.
If you find anything out, let me know. If it's caused by something else, I'm sure he would love to get checked out to see if something besides the Lyme is causing it!
posted
I get that sometimes, a neurologist once told me it was atypical migraines. I had one the other day, it lasted for ~40 minutes and left me feeling loopier than usual...
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have a small light blue light that appears in my peripheral vision. It is about the size of a pencil eraser.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I get them in the middle of the night. If I wake up it looks like a strobe light going off. I really bothers me.
Posts: 56 | From Austin, Tx | Registered: Aug 2009
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posted
i know what yer talking about; little phamtom black swooping black figures crossing your periperals its a normal neuro lyme thing. brian
Posts: 217 | From Everywhere | Registered: Nov 2006
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bettyg
Unregistered
posted
i had the colored lights on lymenet when i herxed bad on flagyl; stopped taking them; no more...
my eye specialist had some comments; but neuro lyme won't let me remember them....but i think it had something to do with CORROTED arteries in neck! so i was tested and did have but not enough yet for surgery.
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posted
Dear trigal2, I get glittery little lights. They disappear very quickly. Much of the time, they are light blue. Sometimes, they are gold or light yellow. A lot of people tell me it is not floaters, so I am not sure what it is. I am not certain if Lyme is causing it or not at this point.
Dear Keebler, Thank you so much for the information and links on Salvia and Goji. I have a terrible time with visual issues you mentioned after looking at the computer screen too long. I also see spots easily if I look at lights directly. It was interesting you mentioning the balance issues in the dark, because I always manage to get disoriented in the dark for some reason. Being very near-sighted does not help any. Sometimes it appears that objects are moving when they are not.
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I get flashing lights in my periphial visiton. Mostly in my left eye.
I've been in treatment for 3 1/2 years and JUST got this symptom a few weeks ago.
Posts: 1761 | From USA | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Even the appearance of flashing lights can also be from dry eyes. Be sure to keep them lubricated with preservative-free "liquid tears" or something similar.
Dry eyes can cause lots of problems with vision. Remember to blink. Oddly, when using computer, blinking gets forgotten.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i've been fighting lyme a long time
once for 2-3 days i had a lot of flashing lights
it was dx as "silent migrains"
sometimes my floaters really put on a show too...its interesteing to watch-as good as tv...
i haven't had them in a long time but have been on tx so don't know exactly what made them go away
i do have 2 closed head injuries and post concussive syndrome
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My twin sis and I both have the flashing lights in the pheriphial vision. It comes and goes and is worse some times than others. We both have neuro Lyme. I've had MRI to rule out Chiari Malformation so I know mine isn't caused by that. (though they did suspect it before the MRI)
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes I get this, sometimes it will be one flashing light, sometimes I see a lot of them. Especially if I sneeze or stand up fast. Sometimes there's no trigger at all. I'll just see one out of the corner of my eye.
posted
Dear Keebler, I do wonder if I have Sjogren's Syndrome. My eyes are extremely dried out. No matter how many drops I put in, they still bother me. The only time they are not dried out is when they tear-up and burn like crazy. This is likely due to allergies.
posted
Dear bettyg, Much of the time, I wake up with what I refer to as "velcro tongue". My tongue actually sticks to the roof of my mouth sometimes my mouth is so dry. I heard Sjogren's can make your teeth go bad. I wonder if that is what is causing them to go bad more recently? Do your lips stick to your teeth because your mouth is so dried out?
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Ocean, I'm like your brother. Everything else has gotten better, but my vision has not.
I have flashing lights all over the place, not just peripherally.
Eye docs (several) have tested me for retinal detachment, macular degenration, cataracts, etc. and find nothing.
What really bothers me is that I feel I am losing vision in my left eye.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had this right after I started treatment. Only 3
times. It was like a light flash from the inside
out. Weird. I told myself "What the heck was that".
It has not happened again.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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LLMD says it is from Neuro Lyme and Neurosurgeon says from Chiari. My bet, as someone else said, is a combo of the two.
Just would be nice (yeah, in the land of ideals..) if both Doc's could work together - especially given the Doxy can cause raised ICP and that in and of iteself could make the vision problems worse in the case of Chiari.
Anyway just wanted to see if others with Neuro. Lyme get this. I appreciate everyone sharing their expereinces and thoughts.. TG.
Posts: 376 | From New Jersey | Registered: Jun 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
My former LLMD ordered an MRI (one of many I have had over the years..) and that one showed a 5mm herniation/Chiari Malformation.
At that point I found a Neurologist that specialized in chiari. He ordered a CINE Flow study ( another type of MRI) to see if the cerebellum herniation was causing a restriction in my CSF flow. That was positive as well.
Hope that helps....TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Jin,
you asked about Sjogren's Syndrome. That is a syndrome, autoimmune and sometimes misdiagnosed as an umbrella dx, like fibromyalgia. I was told a few times I had Sjogren's, based solely upon dry eyes. No special tests were ever run, although I'm sure there should have been.
But one of those doctors never would accept the positive lyme tests for what might be an underlying cause of symptoms - and no one bother to tell me at the time that the antidepressants they gave me for "fibromyalgia" would cause dry mouth and dry eye.
However, Sjogren's Syndrome - if an accurate and separate diagnosis - can be something that needs attention. Regardless, if eyes are dry, they must be attended to as damage can happen from too dry of an eye. Also, severe dental problems can occur from dry mouth.
First, check every medicine you take and see if dry eyes or dry mouth are a side-effect.
Also, ask your LLMD about it as lyme messes with the autoimmune functions. Your LLMD would be best to know what is what and guide you to a LL person in that area.
-
[ 09-18-2009, 04:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Autoimmune Diseases and the potential role of Chinese Herbal Medicine - by Subhuti Dharmananda, Ph.D.
Excerpt:
. . .
Sj�gren's syndrome is a chronic, slowly progressing inability to secrete saliva and tears, and is usually a late-onset disease. It can occur alone or with rheumatoid arthritis, scleroderma, or SLE. About 90% of cases occur in women, most often at or around the menopausal years.
Symptoms: Dryness of the eyes and mouth, swollen neck glands, difficulty swallowing or talking, unusual tastes or smells, thirst, tongue ulcers, and severe dental caries (which occur because of the lack of saliva).
. . .
UNDERSTANDING THE DISEASES
Many times, autoimmune disorders are mistakenly described as excessive responses of the immune system or deranged responses of the immune system (``the immune system has broken down''). In fact, this depiction is misleading.
A portion of the immune system has been targeted to attack specific parts of the body, in the same manner that it would target a pathogen; it may be functioning normally and without disorder, other than the ``target,'' which was established by genetics and certain events.
Thus, even if the immune system is in all other ways normal, this response gives rise to the disease symptoms. . . .
- Full article at link above.
======================
I tried (but got too tired to finish) a search for: Sjogren's, borrelia. This might lead to something.
Still, your LLMD would know best how to sort this out. As with MS, ALS, and other conditions, lyme can be the cause or co-exist.
posted
Dear Keebler, Thank you for the links and information! I have heard of SSRIs causing such symptoms. I was forced to take Celexa, and am stuck on it. I wonder if I will ever get off of it. The drugs are dangerous and even being weaned off of them can cause extreme withdrawal.
Still, Sjogren's does seem to be a good fit. I particularly was surprised by the mention of smells and tastes. There are times I am smelling something like bananas while I am sitting at the computer. If there had been some there, that would not be odd. However, tastes are also something I tend to develop at odd times. The other day, everything tasted like peppermint.
Sjogren's is supposed to be common with Celiac as well. Doc Dave told me about how it could be causing my dental issues. None of those began until my early twenties. I had healthy teeth before that. At this point, it is difficult to say for certain what causes the trouble. My Western Blots were quite vague, and more testing is really necessary to be certain Lyme is the trouble. The 41 kDa band was positive on the IgG, and was IND on the IgM.
When you said that Sjogren's can cause glands to swell, that was another thing I have trouble with. I thought it was due to my abscessed tooth, but maybe not. You just never know with our bodies! We are all mysteries to everyone. That is why we are stuck dealing with this by ourselves. Sjogren's really does appear to be an issue, considering I have even had gum dissolve in my mouth!
posted
I get the strobe-light flashing in the dark, and the black shadow pulsing things when it is bright. I've had this since I was a kid -- my mother and grandmother both had the strobe-light flashing, as well.
My mom is positive for lyme, not sure about my grandmother (but she lived on a farm for a lot of her life)
I suspect I've had lyme most of my life.
These went away for a while with treatment, but are back now that I can't afford treatment anymore.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Dear minimonkey, I get some of that as well. I am not sure what is causing it. I have had the strobe light flashes in the dark and other symptoms since I was young also. We live in an area with a high deer population. That means more deer ticks.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I read some, not all, of the responses. But, as Keebler said, it's important to see an opthamologist, or a retinologist ASAP.
The flashing peripheral lights can be signs of either a detached retina (an emergency!) or a detached vitreous, which
needs to be checked regularly, to make sure that it doesn't turn into a detached retina.
Of course, there are other possibilities, like the Chiari, etc., but make sure that it isn't an opthamological problem that needs to be monitored.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Dear Rumigirl, My lights are not in my peripheral vision. They are right in front of my eyes. What does that mean? As far as I know, I do not have Chiari. I see them most often when I am just sitting writing in my notebook. It is off and on.
posted
Yes, when I move my eyes from side to side it looks like camera flashes in the corners of my eyes.
This started in May '08 before my diagnosis and persists now at almost 10 months into treatment.
I also get eye pain with movement and sometimes mild double vision, but both of those are much improved now with treatment.
I had very thorough eye exams by optha. and a neuro-optha, and my eyes themselves are fine.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
Please take Rumigirl's advice to have it checked out by an opthamologist or retinologist. The flashing lights can be indicative of many things with Lyme and tick born diseases. In my case, the flashing lights turned out to be a detached retina and blindness ensued. I required an emergency surgery 18 months ago. I am not indicating this to scare anyone nor suggest that this is the cause of all " lights" merely to remind everyone that vision is a very precious commodity. Any abnormality should be evaluated by a trained professional to determine exactly what it is. Best wishes. Iceskater.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Dear Wonko, I have those camera flashes as well. Being very sensitive to light does not help. That makes it worse. Looking directly at lights will cause me to see spots immediately. I sometimes experience my vision lightening temporarily when I blink.
Dear iceskater, My trouble is, I cannot afford to see an eye doctor. I have no insurance. I agree that no one knows how precious eyesight is unless they have had vision issues. Being nearsighted, I wish others knew how fortunate they are to see well. So many take their vision for granted.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have the flashing lights in the side of my vision as well. It comes and goes. When it happens, it's usually only at night or in the morning and it only happens for a few seconds.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Yes I had that last summer before treatment. That went away once I started treatment. I also took a good quality B6 when I began abx. I take Bactrim 2 x per day and minocycline 2 x per day. I no longer have that particular weird symptom. went away in about a month or maybe it was the cold weather. My neuro symptoms were all year round but worse in summer due to heat and humidity possibly.
Posts: 46 | From NE Ohio | Registered: Nov 2008
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