This is topic EEG/mini seizures-need help! in forum Medical Questions at LymeNet Flash.


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Posted by maureen2174 (Member # 11471) on :
 
so i was pretty much in remission for over a year and then starting in december i started having neurological symptoms, mainly a constant internal trembling, a feeling that my nerves are all out of wack. also feel my head bobbing.

i went to my LLMD, had blood test with Igenex again (western blot and babesia FISH- both negative, but she gave me a month of abx. to try, which i didn't yet.

instead, i have been using herbs and in the meantime had an EEG at a neurologist. went back to neurologist for results today and he said EEG is all out of wack, i guess showing mini seizures constantly and that is why i am feeling the constant vibrating/trembling. sent me home with anti-seizure med. said i need to take it forever or i could blackout at any time. i do get lightheaded too, but never faint.

has anyone had this situation? he said 90% of the time we never know what causes this in people. i guess for me it is lyme???? i have none of my other lyme symptoms back, and my LLMD will not commit this symptom to lyme disease either. I am so confused!

The only other symptom i have (and have had for over 2 years now is a constant fullness in my left ear, hearing heartbeat in that ear- blood flow i guess, and a muscle spasm in that ear that comes and goes.) i am really wondering if this is related to the neuro. issues because the EEG showed the abnormal activity on the left side, same side as ear symptoms.

i am going to get an MRI.

any info., help, suggestions, or stories of same experiences would be appreciated as i am not sure what to make out of all of this.

thanks, maureen
 
Posted by Keebler (Member # 12673) on :
 
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I think you need a new LLMD. This can absolutely be connected to lyme. There is a wealth of information about what you describe and lyme. But, even if not, you need someone who is going to look deeper at this and and just sedate you.

Seizure drugs can be very toxic to the liver so you need to get a second opinion. Please do not drive, though, until this is all worked out. My guess is that the doctor discussed that with you.

The ear stuff, too, can trigger seizures - or complicate the matter. I have much more about that but, first, you need a better doctor.

And - I've been there - still are but better to some degrees.

ANDRGRAPHIS is the best help. Magnesium is still required. What is your current level of magnesium supplementation? This is very, very important.

As for the herbs, you posted yesterday that you are taking Pinellia as a single herb (and that is usually used as a single herb).

Who is prescribing your herbs and are they a LL ND or degreed equivalent?

I have many things I could add here but am very tired and I don't really have a composite seizure file so I'd have to pull it all together.

First: you likely still have lyme but it's not being treated. If lyme connected, the infection must be treated. However, it's not clear WHAT herbs you are taking and if for support or for antimicrobial properties. Even then, not all herbs work with lyme.

Are you familiar with Buhner's book? Zhang's? Are you on an alternative lyme protocol or herbs for support.

Are you on good liver support every day?

On a GLUTEN-FREE diet? This is very important, too.

Ingesting even a trace of aspartame/Nutrasweet/Equal or MSG? Even a trace? check even your cough drops, toothpaste, etc.

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[ 02-19-2010, 03:13 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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Not quite organized but some good links from my files:

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http://www.vrp.com/articles.aspx?ProdID=art1066&zTYPE=2

Seizures: A Nutritional Approach

Seizures can be attributed to a number of causes including metabolic abnormalities, infections, nutritional deficiencies, or trauma. . . .

================

Find the link for "Secondary Porphyria" - excess porphryins can trigger seizures and lyme patients often have a type of porphyria due to liver dysfunction and toxin overload.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?

Topic: Porphyria

=================

B-12 shots have helped me tremendously. A special kind is mentioned here:

http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease


============

http://tinyurl.com/5aegv5

Altern Med Rev. 2007 Mar;12(1):9-24. Links

Natural approaches to epilepsy.

Gaby AR.

. . . This article reviews research on the use of diet, nutritional supplements, and hormones in the treatment of epilepsy. . . .


=================

http://www.vrp.com/articles.aspx?ProdID=art1734&zTYPE=2

Vinpocetine: Cognitive Enhancer's Role Expands to Incontinence and Epilepsy

==================

http://www.vrp.com/articles.aspx?ProdID=art2168&zTYPE=2

The Liver: Detoxifying This Vital Organ Nourishes Overall Health and Vitality

====================

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Hypomagnesemia, seizures - 90 abstracts

Magnesium, seizures - 723 abstracts

Calcium, seizures - 1782 abstracts

Fish oil, seizures - 14 abstracts

Also search: Corydalis - and Gotu Kola

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ARNICA - BOIRON homeopathic - I take this right after a seizure and it reduces brain swelling.

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[ 02-20-2010, 01:18 AM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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In addition to magnesium and Gotu Kola, Andrographis has helped calm seizures for me. Andrographis has been the best thing I've used. As in Buhner's book "Healing Lyme"

Two major strengths of Dr. K's protocol that can help diminish seizures (in addition to treating infection) are addressing heavy metals and exploring if excess porphyrins are connected due to liver dysfunction from toxicity.

==================

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf

A Treatment Guide: Lyme and other Chronic Infections

by Dietrich Klinghardt, MD, PhD

October 2009 - 87 pages

===================

For andrographis:

http://tinyurl.com/5vnsjg

Book: Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

website: http://planetthrive.com/2009/08/buhner-healing-lyme-program/

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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86857

Topic: Buhner Healing Lyme Q & A links have changed
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Posted by maureen2174 (Member # 11471) on :
 
thank you. i am not actually taking the pinella. the herbs i am taking are samento, cumanda, and burbur. also taking the herbs from myherbs.net- 100 day lyme protocol, but i have to see what is in it.

i am not really having full blown seizures, it was basically told to me my neurologist that the abnormal EEG shows constant irregular activity and he may have described what i am feeling is like mini seizures.

as far as not driving, that isn't even possible for me, because i work almost 2 hours from where i live. i have to take the anti-seizure meds to drive so i could get to work i guess. yes, it was mentioned by neuro. that i should not drive without the meds.

as far as the ear symptom, i have mentioned it to both the neurologist and the llmd. the llmd never really comments about it. the shakiness she thought could be anxiety, but then when she saw me again in january she said that it could be from lyme and gave me a trial of abx, which i did not take because i was not at all sure it was lyme myself and i knew i had the EEG scheduled in february at that point.

i just got the results from the EEG today, so my llmd doesn't even know about them. she just wasn't sure that what i was describing was lyme, although she didn't say it definitely wasn't lyme.

i am not even certain it is lyme. i am wondering if the fullness in the ear and spasms there is what is causing my whole nervous system to be out of wack. it seems like i can find noone who even has a clue about that though.

i do have antibiotics to treat the lyme, but i also have to stop this feeling. it is very hard to function feeling this way and obviously i need to drive, so i think i need to try the meds.

i am using mg. cream at this point. i tried shots, but the last shot caused an awful burning feeling in my thigh for a few weeks afterwards, so i am leary about trying the shots again.

i am getting my b12 levels tested- but i do take folgard which is folic acid, b12, and b6.

i will take more mg. i do already take fish oil.

does this sound like mini seizures (whole body internal trembling/vibrating feeling)? i am planning on treating the lyme at this point in case this is all from that anyway, but i don't have the other lyme symptoms i once had like the muscle and joint pain.
 
Posted by seibertneurolyme (Member # 6416) on :
 
From a neurological perspective I would suggest a SPECT scan rather than an MRI or in addition to the MRI. That should give you a better idea of how bad the brain inflammation is.

Bea Seibert
 
Posted by maureen2174 (Member # 11471) on :
 
who orders the spect scan? your llmd? where do you get this type of test? i know i have heard it mentioned before, but i am not sure if you go to the same place that would do an MRI. thanks
 
Posted by Keebler (Member # 12673) on :
 
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Yes, Bea has an excellent point. A SPECT is often more informative as it can show if the brain is getting good circulation.

An MRI would show possible lesions (which are common with lyme).

A SPECT is best ordered by a LLMD and best reviewed by a LL doctor. Your LLMD should know the exact way to order it, etc.

Normally, the SPECTS and MRIs are in the same buildings or wings as both are imaging services/radiology. And, with all tests, best ordered and reviewed by LL doctors as those who are non-LL often miss important clues or patterns.
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Posted by maureen2174 (Member # 11471) on :
 
okay, thanks. i will call the llmd on monday and ask to see if she will order a spect scan based on my symptoms and the abnormal EEG results I just got. thanks
 
Posted by maureen2174 (Member # 11471) on :
 
even if the spect scan comes back abnormal- what would that really prove- that it is probably lyme? i mean would it show other things that may need to be addressed? does it only show inflammation basically?
 
Posted by Pinelady (Member # 18524) on :
 
You are probably low on vitamin D and thyroid may be out of whack too.
 
Posted by Keebler (Member # 12673) on :
 
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Along with thyroid, adrenal function is all out of whack with lyme. Seizures can be a result of adrenal fatigue, too.

Many libraries carry this book and you can read 95 customer reviews here (average 4.5 star out of 5) AND see inside the book:


www.amazon.com/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152/ref=sr_1_1?ie=UTF8&s=books&qid=1263516913&sr=8-1

Adrenal Fatigue: The 21st Century Stress Syndrome

~ James L. Wilson, ND, DC, PhD, Johnathan V. Wright, MD

About $10. And qualifies for free shipping with a total $25. Purchase at Amazon

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Also see this thread for an article on a special form of taurine used to stop seizures:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/91243

Topic: Taurine - Helps Liver Excrete Biotoxins/HPU Related

=================

Lack of good sleep can also lower the seizure threshold.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements

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Posted by maureen2174 (Member # 11471) on :
 
thanks guys. thyroid test was normal. getting tested for vitamin d (should it be specified which one), vitamin b12, and ferritin levels- will go to lab next week for test.

how do you get adrenal tests?

my husband told me that the neuro didn't actually say seizures, but more like seizure activity. the EEG showed short irregularities throughout and if it gets longer, it could cause blackouts. wanted to know if i get lightheaded, which i do, although i have not fainted.

he seems to think the internal trembling will be helped with antiseizure meds and then avoiding a potential blackout.

thanks
 
Posted by Keebler (Member # 12673) on :
 
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"Internal trembling" is so a symptom of magnesium deficiency. Are you up to about 1,000 to 2,000 mg a day (just below bowel tolerance)? You may need shots or IV to get intracellular levels up and then orals would take over from there.

Have you been assessed for NMH:Neurally mediated Hypotension - or for orthostatic hypotension? NMH, especially, goes along with lyme and causes lightheaded episodes.

Is this worse when you exercise? Or immediately after you get up from a sitting position - or after a few minutes of standing?

A Tilt Table Test is one used for NHM but your LLMD should know more about this. NMH can also be connected to adrenal function being exhausted.

Do you feel better after consuming salt?
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Posted by Keebler (Member # 12673) on :
 
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If I don't get enough protein, I can feel the seizure threshold lower big-time and what you call "internal trembling" is one sign of needing more protein.

Protein helps our bodies make glutathione and that helps the liver detox . . . protein's amino acids help our brain, our hearts, our muscles, etc., etc., etc.,

Taurine (found mostly in muscle meats) is vital, too. Vegetarians and vegans should consider supplementing taurine, as well as B-12 and L-Carnitine. Taurine is extremely important.

Even a supplement of Taurine can calm what you call "Internal trembling" but it is also important to come in a package with food.


http://icmr.nic.in/ijmr/2006/august/0804.pdf - 20 pages


THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .


Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.

Excerpt:

" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."


- Full article at link (or google the title if it does not go through).

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Posted by Keebler (Member # 12673) on :
 
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Also to consider since inner ear stuff often goes along with lyme, when you feel lightheaded, is that coming from the inner ear/balance center?

http://www.vestibular.org/vestibular-disorders/symptoms.php

VESTIBULAR SYMPTOMS

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Posted by Vermont_Lymie (Member # 9780) on :
 
Sounds like my symptoms before treatment for lyme and babesia.

Babesia can be a major culprit in these type of neurological symptoms and I found relatively quick relief from treating babs.

Best wishes for your recovery.
 
Posted by karenl (Member # 17753) on :
 
Mauree,

" the abnormal activity on the left side, same side as ear symptoms "

I had the exact same diagnosis and the MRI added small vessel disease and many white dots.

But the MRI made the situation a lot worse. The gadolinium what they give you is toxic ( look up class action lawsuits) and after the MRIs I had blurred vision and many other problems. Then I got really sick.I did not take the meds as my tongue got very swollen.

I also have very low magnesium and I have porphyria.

Keebler, thank you so much, we have to read all your literature.

This could be also from mold, mold causes seizures!! I moved. You need to be 100% sure you have no mold at all.

Estrogen was very bad for me and you can do an adrenal saliva test, I think it is Genova. My adrenals are doing great.

My internal vibrations are gone since I am on mino.Was already better with flagyl so I think it might have been more a parasitic problem than a nerve problem.
 
Posted by maureen2174 (Member # 11471) on :
 
I haven't been assessed for anything.....i was just shown the EEG report, basically told that 90% of the people with this sort of activity do not find out the reason, and sent away with a pill to take the rest of my life.

thanks so much keebler.... i will read all the links and look into the suggestions.

i wish i could do the mg. shots- i have a script, but the one shot i did resulted in my whole thigh having a horrible burning pain that lasted for 3 weeks, so i am scared to try it again.

right now i am using the mg. lotion, i guess i should also add some oral mg. too.

the internal trembling is worse after exercising, right after. also, on the eeg report it showed that it was a lot worse after taking deep breaths. actually while i was taking the breaths i could feel the trembling getting worse and worse during the test.

any ideas on that?
 
Posted by Keebler (Member # 12673) on :
 
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Whoever gave you the magnesiums shot prescription and did not tell you to add B-12 needs a thump on the nose. I, too, started with the shots in my thigh but it was painful beyond belief. Finally, I found out that B-12 takes away 90 percent of that burn/sting.

I did 1 cc. mag. sulfate and 1 cc B-12 (see Dr. B's notes for the kind of B-12).

If the "internal trembling" is worse after exercise, you are doing WAY TOO MUCH. If you are dealing with active infection aerobiic exercise can damage your heart. Dr. B advises no aerobics until nearly all better.

In a previous post you said you "walk 7 miles on the treadmill" - I don't know how fast and if that is all at once, each day or over the course of a week. But, if you feel your nervous system both shoot to the moon and shred all at the same time, following exercise, something is wrong with that picture. The exercise sound like too much.

If you have porphyria, aerobic exercise can dump way too much toxic stuff at once and overload your liver. If you have adrenal problems, aerobics may be way too much, etc.

Whatever the reason, that it is worse after exercise indicates something is wrong. It could be mitochondrial dysfunction which is huge with lyme and other chronic stealth infections.

It could be some vasovagal stuff going on. I suggest stopping whatever makes you worse. Gentle exercises, yoga, Tai Chi, walking can still be helpful - but only to the point where you don't get worse.

Lyme also can destroy the outer sheath of the nerve fibers (myelin sheath). Hard exercise can make that worse.

Take it easy. Your body is trying to tell you that. You may not understand all the processes but the message is clear, slow down. Then you can assess nutritional needs, infection status, mitigating conditions, etc. But your body really needs a rest right now.

Hope this feels better soon.
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