posted
Don't know what to do. In a nutshell: My daughter got Lyme while I was being treated, caught it day of rash, was started on ABX that day. Was treated till symptom free (she had ALOT more than 30 day's, so the theory of catching it fast is wrong, lol)...even had several weeks of Larium cuz I was pos for Babs, although her test was neg.
Meanwhile, she runs cross country, is strong, is symptom free, has a after school job,no trouble concentating in school. Life for her is good.
Fast forward to about 10 mo's ago - school calls & say's come get her - 1 eye is stuck in a totally dilated position. No headache, feels fine...(Anyone ever have this symp w/ eyes?)I call eye dr - he's in surg. They call him in surg - he say's bring her in at 2PM. As luck would have it - eye stayed that way for 5 hr's - and of course - when does it go back to normal? - You got it - on the way to that appt. He examines her - orders MRI's & refers her to neurolgist. All said & done - she had 4 different MRI's - eye's, brain, vascular, etc - nothing found. Neuro guy ran some other test's in office - nothing. Bring her back if it happens again...
1 mo ago: stepped outside to trim her hair - she suddenly shudders and I'm like - hay - stay still kiddo, sissors back here. Then she say's "something's wrong" and starts to collapse. I drop sissors & go to grab her & turn her aound so I could see her - I watched all color drain from her face, and BOTH eyes go totally dilalated! Now she's holding on to me telling me that she can't see. I'm screaming for my husband to come help me get her back in the house. We get her inside, eye's go back to normal. Tested w/ flashlight - eye's now responding normally.
I put in frantic call to LLMD & was basically told "No way is it Lyme this far out from treatment". My heart tells me different - but I feel like I'm between a rock & a hard place. Reg Dr's have already done the MRI's and found nothing, LLMD say no way...what am I supposed to do?
Day to day since - she's fine. What worries me is that cross country is starting up again for her, and I'm scared to death running 3 miles a day in this Tenn heat that something's going to happen to her.
So - I guess my question is - those w/ eye prob's - ever have anything like this? Am I crazy for thinking it could be a Lyme symp? Eye's were not a prob when she was having symp's - her symp's ran more in the insomnia, rage, tapping & banging - couldn't sit still like she was speeding.
One other thing I noted recently - she went for her cattle drive school sports exam - and her BP was so low that they did it 3 times - but approved her for sports! (It was something like 60/90) I also have low BP. Don't ever remember reading about low BP as a symptom, but am now wondering if it's possible...Or can low BP cause eye probs?
Does any of this ring a bell w/ those w/ eye prob's? What should I do?
BTW - she's 16&1/2 now.
Thanks for any imput, suggestions...I'm already thinking about new LLMD. (((hug)))
Posts: 176 | From Tenn | Registered: Jul 2004
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pupil dilation isn't uncommon in syncope. by your description it sounds like you caught her fainting and you saw the pupil dilation. It's not uncommon when people have low BP and go to rise quickly.
On another note, the episode where she had a unilateral dilation, that may have been a form of an ocular migraine. You can google these but they're pretty common too. Thankfully you've had the MRI/MRA done to rule out the nasty stuff.
Sounds to me that you have little to truly worry about.
Be well.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I would pursue the low blood pressure route. She could have some form of autonomic nervous system disorder, which can cause drops in blood pressure.
Don't close other possibilities off because of the Lyme history.
I'm saying this part from personal experience. I don't know your daughter at all and I'm not making accusations. Just sharing. A friend of mine as a teenager had her eye dilate for a few days after robo-tripping. Robo-tripping is when you drink 1/2 to a full bottle of the cough medicine robotussin to get high.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks for responces.... EyeBob - yes, ocular migrane is what they chaulked it up to after all tests were neg. Although a headache did not preceed it or come after, but they said that is possible.
Aniek - yes, I will get the BP thing checked out. She's a pretty good kid overall (now that Lyme rage is gone) and hangs with good kids, so don't think she's doing any drugs. Not that I have my head in the sand& think she's perfect - but we live in small town & kinda know which kids fall into which catagory. Thanks for sharing.
Neither of us experienced eye prob's w/ our TBI's but know that others have - so please respond if eye problem's are 1 of your symptoms. Just need input concerning lyme/eye stuff since it's not something that I have personel experience w/.
Posts: 176 | From Tenn | Registered: Jul 2004
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tailz
Unregistered
posted
Eye symptoms were one of my earliest symptoms. I remember being placed on Neurontin, and with the very first pill, my one pupil dilated unexpectedly and abnormally. This happened a couple of times after this, too, while on Neurontin.
I was able to see, but it was kind of blurry like when the eye doc puts drops in yours eyes. Nothing was done though.
My BP was also running low back then. 90/50 and 80/40 were not uncommon.
Now, however, my pupils are always tiny. I think I preferred them the other way. And my BP is high for me, but still within normal range.
I also have had fainting episodes back when I was younger - unexplained. There was a period of time there where that didn't seem to happen as frequently, but in recent years, they have kicked in again - usually I turn pale, and many times my gums or tongue are blue prior to the event.
But PLEASE do some research on electromagnetic pollution, cell phones, wireless, cordless phones - for you and your daughter. We are constantly being BOMBARDED with signals that are harming us, yet we cannot see or hear or smell or touch them.
The author of 'The Body Electric' and 'Cross Currents' attributes the rise in Lyme cases to this new technology (I forget which book), saying there is research that shows these bugs and toxins are able to cross the blood-brain barrier shortly after exposure to ordinary 60hz alternating house current
- let alone the cell phones and wireless that are virtually everywhere today.
I think Lyme WOULD be curable, if we would just get these signals turned off.
You might want to check out www.antennasearch.com and see how many cell phone towers and antennas are around your daughter when she starts to feel faint or show other symptoms of distress.
Also, this article about how kids are basically being used as guinea pigs in a scary experiment - we ALL are - yet our government is doing nothing to stop them - nobody's is:
Also, I have found avoiding high iron and high copper foods to be somewhat helpful - not sure which metal is the problem, but even the 60 hz frequency coming into our homes causes metals to redistribute in the body - especially key organs like the brain.
We use copper wiring in our homes, for example. Imagine what these fields are doing to us each and every minute we are exposed. We're basically being electrocuted and radiated to death, but again, businesses would lose out if our government were to take these studies seriously.
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sounds like she was overheated and ready to faint - drop in BP further.
In addition...where was she at re: her periods? During a period?
That plays a part too - hormonal wise.
I would watch her BP and blood glucose levels like a hawk. Get a diabetic glucose monitor. Learn how to use it. Same with a blood pressure monitor. Get a good one and have a nurse-friend teach you how to use it.
I'm not sure cross country running is particularly healthy for her right now (esp. in the heat) as long distance running depletes us of essential nutrients...glucose first of course.
Runners have switched from carb bulking prior to racing to drinking..get this..chocolate milk for longer endurance prior to races.
Personally, if she were my daughter, she'd be seeing a top notch neurologist at a MAJOR facility after getting a referral from her GP.
A doctor affiliated with Johns Hopkins or Northwestern Memorial would be my choices.
Did they do a FUNCTIONAL brain MRI i.e., MRI WITH MRA?...this tracks blood flowing thru the vessels. It is not a "snapshot" but more like a video.
CT scan and MRI missed right dx. first time for my son. It took a MRI with MRA to find the problem.
" However, standard MRI sequences fail to detect acute infarct in 10-20% of patients. MRI/MRA are often helpful as follow-up studies to evaluate the extent of infarction, presence or absence of hemorrhage, and degree of stenosis of the cerebral vessels.
In patients with persistent transient ischemic attacks, the combination of carotid vascular ultrasonography and MR angiography may obviate the need for carotid angiography."
Neither of us experienced eye prob's w/ our TBI's but know that others have - so please respond if eye problem's are 1 of your symptoms. Just need input concerning lyme/eye stuff since it's not something that I have personel experience w/.
Hi -- I haven't had eye dilation problems. My eye problems have included aching eye muscles, light sensitivity and blurry focus.
When I started drinking Ultra mangosteen juice, within the first hour the blurred vision and the eye pain stopped. Within 24 hours, the light sensitivity was greatly diminished.
Manogosteen juice is an anti-inflammatory, anti-oxidant juice made from mangosteen fruit from the tropics. Lots of companies offer it, usually in combination with other juices. You can find it at healthfood stores, online, and as a multi-level marketed strong version called Xango.
The one I drink, called Ultra mangosteen, also has 70 minerals and vitamins added to it from the Utah sea beds. It is cheapest ordered online, from Vitacost, I think.
If you try it, start slowly(just a little at a time -- it can be powerful), and drink a lot of water.
Posts: 13117 | From San Francisco | Registered: May 2006
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In clinical practice ocular migraines present all the time. The headache doesn't have to follow. It'd be my guess at this point, but if you have not had an MRA yet, you should consider it. It doesn't fit the clinical picture of an aneurisym because if that's what she had, she'd be on her back in pain.
Hope this helps.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Marnie - Yes, MRI w/ MRA was also done. Good idea about getting a home BP, will check into it. Darn, my diabetic Mom was just visiting & I never thought about checking her sugar w/ it. Think it's time to schedule a complete workup as far as bloodwork is concerned also...see if anything else pops out at us. Also, I noticed alot of the runners drinking RedBull before races - she is not allowed.
Robin - not 5 mins before I read your post here I had written down your juice & maker from a different post of yours! I will give it a try - Does the site offer info on the product? Do you perhaps have a link?
Thanks again all!
Posts: 176 | From Tenn | Registered: Jul 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I would contact Iceskater here on lymenet. She has many eye-related problems. I know some folks see an ophalmologist in PA. I will look for his #
His bio states he works with lyme folks with eye problems. Maybe you can put a call into him for guidance.
So many teens in my moms' support group have blood pressure related problems that surfaced with their lyme. Very low is common and needs to be treated.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Sending a PM
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I have the same problems with dilation in one eye. I have photosensitivity and very low blood pressure as well. Eye Dr. cannot find the correct prescription for my contacts as it changes frequently. I also experience eye pain and pressure in the same eye. To date, we cannot find out what is causing the problems. I guess Lyme, as I am WB positive
It also caused my sinuses to run in the first hour, and I don't usually have sinus problems. Then my intestines emptied for three days, and ever since I have been regular like a baby. If I didn't drink the juice, I would be constipated.
Also, four days later, my gums stopped bleeding. So I think the juice is very healing to the entire body.
My nails have gone hard from the minerals added to the juice. I've known about that effect, since I had used another product from traceminerals with all the minerals in it.
We're all different, however. I am reporting my own experience and I cannot know what it will be like for someone else.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Hummm, much food for thought here; maybe my instincts are on target after all. Thanks all for your responces & help sorting thru this.
Valy - I will try to do a phone consult w/ him. Our family is in NJ, so PA isn't impossible if need be... Maybe he would also be willing to take a look at her tests & see if anything pops out at him. Ya know - we learn something new everyday - I have always had low BP, so never really gave it a thought - but never knew there was a TBI connection. I will have to have them go thru her chart when I take her for blood work & see how her pressure has been thru the years - pre lyme & since. Do they treat teens for low BP? If you come across anything that relates, please post for me. Meanwhile tomorrow I will do a search on low BP here & see what I can find out.
LED - I hope you are able to find some answers about your eyes...please share if you do! Hopefully since you are getting treatment yours will clear up. Her contact script changes every yr, but not more that we're aware of.
Robin - Thanks for the link! I will check it out tomorrow, unless of course I don't sleep tonight, lol Posts: 176 | From Tenn | Registered: Jul 2004
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Meanwhile tomorrow I will do a search on low BP here & see what I can find out. ![[group hug]](graemlins/grouphug.gif)
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