posted
Hi, My 15 y/o daughter has been complaining the lat week or so about dizzy spells, vertigo, and feeling almost "out of body". Sometimes all sound starts to fade out and things feel surreal.Sometimes her vision wil pan out or zoom in when she's dizzy. Or the floor looks like it's tilted. Our GP was puzzled (he's a duck!), and thought it could be lyme. So he ordered stuff like a CBC, etc., and a lyme WB. I was out of town- tried to explain to DH tht I would call Igenex and get a kit, but he went ahead and had the blood work drawn as ordered for now. GP ordred a month of doxy, just in case. I'm going to ask my LLMD, Dr. P, if he would at least consult. I know he doesn't treat kids. Meantime, if daughter keeps on having visual distortions, I wnat her to see a neurologist, maybe get an MRI. For the last few days, she's just felt run down, dizzy once, and very tired. No more funny visual stuff. Keep in mind, this is the baby I had after getting lyme and being misdiagnosed. AND, we've all been bitten here and there. I have not seen any "early" lyme sx in her- the achy joints, etc. Anybody else had visual distortions with lyme? It's probably one thing I have NOT had! Any ideas would be appreciated. Thanks!
Posts: 688 | From CT | Registered: Jan 2003
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posted
Wow hes actually giving a month of doxy as a precuation and susepected lyme? Thats at least s step in the right direction.
Yes, Lyme can cause all that u mentioned. Thats exactly how all my syptoms started and continue to this day. I have lots of visual problems and the"out of body" experience you are talking about is called Depersonalization/Derealization. It is also some i have constantly and is one of the first symptoms i experienced.
Good luck. I hopee she gets the right diagnosis and treatment.
quote:Originally posted by jocus20: Wow hes actually giving a month of doxy as a precuation and susepected lyme? Thats at least s step in the right direction.
Yes, Lyme can cause all that u mentioned. Thats exactly how all my syptoms started and continue to this day. I have lots of visual problems and the"out of body" experience you are talking about is called Depersonalization/Derealization. It is also some i have constantly and is one of the first symptoms i experienced.
Good luck. I hopee she gets the right diagnosis and treatment.
Thanks. How long have you had these symptoms. Do they get worse for you when you herx?
Posts: 688 | From CT | Registered: Jan 2003
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posted
Yes, they definitely can get worse with treatment. I find I have had the most extreme reaction while on doxy as well as minocycline, which are similar antibiotics.
The derealization feeling is simply horrible, and I feel for your daughter. I truly believe it will go away with treatment.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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quote:Originally posted by mazou: Yes, they definitely can get worse with treatment. I find I have had the most extreme reaction while on doxy as well as minocycline, which are similar antibiotics.
The derealization feeling is simply horrible, and I feel for your daughter. I truly believe it will go away with treatment.
Mazou, Was this an earlier or a later sx for you? Was there any particular abx that it responded to the best?
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Keebler
Honored Contributor (25K+ posts)
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posted
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Sorry - I can't read details in your post because I, too, have visual distortion and have trouble separating out some text - but the headline grabbed my attention.
You might find some good information here - especially the VEDA link:
Sorry - I can't read details in your post because I, too, have visual distortion and have trouble separating out some text - but the headline grabbed my attention.
You might find some good information here - especially the VEDA link: Thanks Keebler, I will follow that link.
quote:Originally posted by MirandaVB: Visual distortions and depersonalization were some of my first symptoms!
the floor will look like it is tilted or things just wont look "right."
how long did it last? Did it go away?
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Keebler
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posted
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Have you had you inner / middle ear checked. So much of this could be from that system. If the ears are out of balance, they eyes will think they are in a warped "fun" house at a bad carnival.
Have you had you inner / middle ear checked. So much of this could be from that system. If the ears are out of balance, they eyes will think they are in a warped "fun" house at a bad carnival.
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yes, thanks, my other thoughts were to see a neurologist and an ENT. I know vestibular disorders can have some whacko sx.
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Keebler
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posted
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A neurotologist would be the ideal combination. One who is also lyme literate is preferred.
Most neurologists know nothing about neuroborreliosis and its effects. Some even don't know much about the vestibular system.
An ENT would not have the extensive training as a neurologist but if you can find a LL ENT, it's a good start.
I hope your LLMD can refer you. That way, you know someone is at least familiar with lyme.
posted
When it happens it usually lasts about a day. But it happens fairly regularly. I'm sorry, I know that's not what you want to hear, but it always passes eventually.
Posts: 44 | From Maryland | Registered: Jul 2008
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posted
I should have mentioned that my daughter, like me, has a migraine problem. There is a possibility that she is suffering atypical migraines.
Posts: 688 | From CT | Registered: Jan 2003
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I had them earlier on quite a bit. Especially before I started taking ABX.
I did find that the Amox and Zith combo worked well in clearing those "out of body" encounters.
They were very scary and you sort of feel out of control. I still suffer with dizziness and vertigo, but the brain fog and depersonalization has lifted significantly. I was tested by the Neuro and the ENT and nothing came back out of whack.
I also suffer greatly from Tinnitus that began before the ABX and have a lot of head pressure that comes and goes.
I wish you luck. I am sorry that you are going through this.
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Keebler
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* Autophony - person's own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
* Dizziness/ vertigo/ chronic disequilibrium/ nausea caused by the dysfunction of the superior semicircular canal
posted
Thanks for all your good info, Keebler. I have learned something about vestibular disorders this past year. One of the nursing homes in the chain I work for has started vestibular rehab.
I didn't realize that there was a visual component.
I keep learning....
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Keebler
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posted
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Cindy,
Yeah, even after dealing with this for a long time, I continue to be amazed at the enormous breath of the visual component.
As well, I know there is a connection to elevated cortisol as all the stress from a wacked out inner ear creates havoc with our adrenal and they are so overwhelmed. So, adrenal support is vital.
In additional to vestibular training, Tai Chi or Qi Gong are very helpful as is a book/DVD "Yoga for Your Eyes"
You can check at Amazon for that and see many video clips by the author on "You Tube" at this link:
Hope this subsides very soon with treatment for lyme/TBD. Don't underestimate the involvement of babesia or bartonella. I hope you've been assessed for those.
And - a practical tip: Don't buy anyone striped or checked sweaters for the holidays!
Yeah, even after dealing with this for a long time, I continue to be amazed at the enormous breath of the visual component.
As well, I know there is a connection to elevated cortisol as all the stress from a wacked out inner ear creates havoc with our adrenal and they are so overwhelmed. So, adrenal support is vital.
In additional to vestibular training, Tai Chi or Qi Gong are very helpful as is a book/DVD "Yoga for Your Eyes"
You can check at Amazon for that and see many video clips by the author on "You Tube" at this link:
Hope this subsides very soon with treatment for lyme/TBD. Don't underestimate the involvement of babesia or bartonella. I hope you've been assessed for those.
And - a practical tip: Don't buy anyone striped or checked sweaters for the holidays!
Good luck.
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LOL I love the part about the sweaters!!! Did you know houndstooth check is back in fashion? The large block version??!!
Posts: 688 | From CT | Registered: Jan 2003
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posted
Today starts day 5 of doxy for daughter. She has not had a visual disturbance or out of body thing for about 3 days now. She's just tired, wiped out feeling.
Of course, when she got them, she was on a 2 day hike with scouts, and then off to volleyball practice. Since then, her level of physical activity has gone to sedentary. So we'll see what happens when she starts getting active again.
I'm waiting to see if she gets a herx. Nothing yet.
The WB is not back yet, all other blood work (CBC, sed rate) was normal.
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Keebler
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posted
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An " out of body thing" can also be a bit of a seizure, especially (for myself) at the start of one.
An " out of body thing" can also be a bit of a seizure, especially (for myself) at the start of one.
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Yes I guess you could be right. Another reason why I want her to see a neurologist if the sx persist.
So far, no more strange visual distortions. It's a sad thing when you're actually HOPING for lyme, because the alternatives could be worse. The "devil you know", I guess.
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Keebler
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posted
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Oh, hey, if when you talk of what could be worse, if you mean seizures I did not mean to toss something else on the fire. Seizures (at least in my case and for many others who have lyme and seizures) are an effect of lyme (with inner ear stuff, too).
So, in such cases, treatment for lyme (&/or other infections) frequently sees such seizures diminish and even disappear.
Seizures can happen when anyone gets too many toxins. Besides infections, here are some other things that can contribute: Mold exposure, etc.; Low magnesium; Low or high blood sugar; adrenal stress . . . . all can create an overload on the brain chemistry and endocrine system.
Migraines, too, can be part of this. And, if the vestibular system is overwhelmed, seizures can be connected with the inner ear/brain connection.
While the thought of seizures can bring fear, and no type is a walk in the park - if the cause is found and treated - life can look better all the way around.
If you are considering seeing a neurologist, PLEASE be sure you find one with the recommendation of a good LLMD. Many neurologists know nothing about how lyme short circuits the body. Some neurologists are also in the dark regarding inner ear disorders.
Many of us here (myself included) have gone through near abuse at the hand of neurologists. There are some excellent neurologist who are better educated, of course, it's just that they are not easy to find.
And, of course, not everything is lyme. But unless a doctor knows all about lyme and other chronic stealth infections and their effects, it's impossible to adequately evaluate.
Magnesium to bowel tolerance might help turn things around. Liver support, too, for support and also to help the liver process endotoxins and move them out of the body. I hope you can ask your LLMD about that.
Good luck in working through all this.
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[ 02-05-2009, 12:37 AM: Message edited by: Keebler ]
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