posted
My husband had severe neurological damage from Lyme. Once we found the correct antibiotic for him he quit having seizures and was pretty much his normal self.
That was in 2003. We were going to a wonderful doc in Pa. He stopped participating in medicare. We had no option but to stop going to him because of the expense. 500 miles, two nights in a hotel, and the entire doctor bill was more than we could do.
We found a doc in Chicago who treats Lyme. He is ok. About 6 months ago my husband began having episodes that were different than what he had before so I didn't think he was having seizures.
However one day he had one when I was home before and after. I was convinced it was a seizure. Our primary care doc had said all along they were seizures. EEG's have not revealed seizures.
He is being worked up at the Movement disorder clinic at Rush University Hospital in Chicago. He also has developed marked tremors of his hands.
It suddenly occurred to me that his symptoms may be a flair up of Lyme. He has been totally off of antibiotics for several months. any opinions?
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Breaking up the text for easier reading for many here -
posted
I'm not a doctor, but it sure sounds like it, and that he may be in need of further Lyme treatment at this point.
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sounds like lyme to me. I deal with seizures that never showed on an EEG (or made the EEG nearly fly to the moon so they figured the machine must have been broken - it wasn't.
That was my overstimulated brain but most regular doctors, even specialists no NOTHING about the kind of seizures that lyme and other tick-borne infections can bring.
Three different QEEGs (done by three different doctors at different times), though, showed exactly the same place in my brain for the trigger of seizure activity.
The couple LL doctors who I was able to see for consult said the kind of seizures I had in their office (from some sudden sound or flash) . . . were what they've seen in other lyme patients, too.
Yet, I can't tell you how many ERs or specialists dismissed me as making this all up.
UNLESS lyme literate, your husband is not likely to get any help from the regular world of medicine. Sure, lyme does not cause everything but if lyme is there, ONLY someone very well versed in it is able to sort it all out.
Those who are not LL are just clueless and often cause more damage, even with testing methods being literally abusive for someone with lyme.
If your husband can't be treated by a LLMD due to costs, he will have to figure out some other way. See the articles and books in the "LL ND" thread to follow.
First action to stop or reduce seizure activity: MAGNESIUM, FISH OIL & BERBERINE are my best helpers.
LL ND (Naturopathic doctor) links here, too, with articles & books for various approaches. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to RIFE, IMO, the other top avenues to consider if there is no way to afford a LL doctor:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When I hear that someone is being "worked up" at ANY medical center, there is some cause for concern.
Of course, certain imaging and vestibular tests can be of great help. Best if a LL actually knows who best to both DO and READ, though. So, if there is anyway he can see a LLMD first, the LLMD might have some particular specialist to recommend.
With lyme, how a test is done -- and how it is read can matter and many who are not LL, just miss a lot. Lyme can cause lesions in the brain (and treatment can help reduce them often) . . . but, so often, some of the clues are missed.
That it is at the movement disorders clinic, though, could point to some of the places in his body that get tripped up (and be sure the consider the inner and middle ear, too, especially if he is sensitive to sound).
If no LLMD is able to be consulted first, still, certain imaging or other diagnostic tests can be valuable, though. Be sure to get your own personal copies of the test parameters and results.
Still, if they find some things, the cause may not hit them on the head. Lyme can cause all kinds of movement disorders.
Two things that can clobber a person with lyme when being "worked up" with non-LL staff: Spinal Tap & Steroids
AVOID SPINAL TAP Not at all needed to diagnose lyme or other tick-borne infections. Not a good test at all.
He does need any more lyme tests, actually. And you don't need to even get into all that with the doctors he's with now, really.
Contact your area lyme support groups to see if anyone has been assessed at the same clinic where your husband is going. This can give you invaluable insight.
Topic: what do STEROIDS actually do to those with lyme? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Added Glutamate or glutamic acid in any supplement should be avoided as added phenylalanine and one other (see details below).
Anything that promises to "boost energy" should be avoided.
Aspartame can cause seizures & movement disorders. So can gluten, especially in someone with lyme.
Many times, unaware, I've had seizures even up to 3 days after consuming gluten. And I learned to never trust anyone's memory as to what went into a dish for a potluck.
"Spanish Rice" in a restaurant also sent me flying. Come to find out gluten is added. See "Hidden Gluten" posts here:
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Three more last thoughts (I hope) of triggers.
- not exactly causes but triggers as once the "kindling" that is sensitizing the brain to the "short circuit experience" has been set a variety of things can trigger but they would not necesarily be the underlying cause.
Most often, for those with lyme who can avoid certain triggers, treatment for lyme and all the issue that go with it can remove seizures from their lives:
1. Any recent vaccination? Dental work with amalgam fillings? Mercury and preservatives can trigger seizures in those predisposed (and lyme predisposes one, for sure).
2. Chemical exposure that triggered a cascade?
Lawn or farm chemical exposure? This stuff can drift from blocks away.
A new vinyl shower curtain? Any new textiles or environment changes with vinyl, glues, carpet, paints? New personal or household care products? Best to go scent free.
Mold exposure?
3. Fluorescent lights?
Best to avoid ALL fluorescents, even the new energy saving bulbs, even in your kitchen, use regular light bulbs in lamps with shades. No "naked" lights of any kind. Find what you can of the old kind of incandescent lightbulbs (some are still sold at Home Depot, etc., though hard to find). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I would love the name of a good Lyme doc in ILL. The one we go to is ok, but I can't call him great. We have an appointment with him tomorrow. Ann
-------------------- Ann Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If going tomorrow, might he be able to arrange an IV magnesium (with other nutrients) drip while in his appointment? It's too late to call today but maybe if you can reach them first thing in the morning, they can have it all ready for him.
These magensium combination drips made a world of different to me.
I'm glad he has at least an okay lyme doctor now and hope you can seek out one better suited for his case. I must have misinterpreted as I thought there was no way to see any LL anymore - so you may not need all that is posted above, then.
Good luck to you both.
DOXYCYCLINE & THE SUN - don't mix, serious burns can occur. Just in case he goes back on doxy - but he's need more than just that as it does not address the cyst form.
Whichever treatment is considered, the cyst form is important to target and that requires additional Rx, or other specific supplements:
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