posted
I have chronic neuro lyme and have been having up to 4 -5 seizures a day now for the past month. I started on Clindomycin IV and oral about two weeks ago and haven't noticed much of a difference. I have been taking primidone every 4 hours also for the past 5 yrs and am wondering if this med is just wearing off or what.
Any thoughts or suggestions would be greatly appreciated.
I do not have an LLMD near me that will see me so I am seeing a naturalpath dr who is willing to try almost anything. In fact he called Dr. L in Baltimore to discuss my case with her.
Posts: 215 | From PA | Registered: Feb 2003
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hiker53
Frequent Contributor (5K+ posts)
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I see a neurologist for the seizures. Is that an option for you?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8911 | From Illinois | Registered: Aug 2004
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posted
It would be if I could find a neurologist who believes me and doesn't tell me it is all in my head and that I am causing them myself.
I used to have a neuro but he closed his office and since then I haven't found anyone who will see me because of my Lyme Disease Diagnosis. As soon as any dr hears LD they say they can't help me. It is very frustrating to say the least.
Posts: 215 | From PA | Registered: Feb 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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What does your LLMD think about this? A short phone call might be of help. Many lyme patients have seizures and perhaps he could tell you if your type matches that or if you need to have further evaluation as not everything is always from lyme or TBD.
Can your LLMD refer you to a neurologist who is LL? As you have learned, if they don't understand neuroborreliosis, they aren't much good. Not everything is lyme, but for the lyme patient doctors really need to know how to determine what is and what is not. They cannot do that if they haven't a clue about lyme - or all the coinfections.
And - have you been properly assessed for coinfections?
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I have been to many neurologists and found them extremely abusive and the tests worthless as the instant I'd fly out of the chair from a slight noise, they would say the EEG would not record that. All the oddities were termed "artifact."
However, 3 different QEEGs, done by 3 different doctors (a Ph.D., an audiologist and an ND/Ph.D.) all showed distinct problems with the same part of my brain and the same brain wave pattern during seizures.
Most MDs do not do QEEGs but a "Functional EEG" is similar and can capture more than a regular EEG.
Also, if an EEG is done and no seizure happens, that does not mean seizures are not happening, but that is the quick estimate of most doctors. AND an EEG cannot measure all parts of the brain.
An EEG cannot measure a seizure that is a result of a toxic overload. (Lyme is very toxic to the liver and to the brain.)
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I deal with seizures from sensory stimuli (sound, light, motion - and from adrenal weakness. I've never been on an ILADS treatment protocol. I've consulted with a couple LLMDs but could never arrange for treatment.
So, I've done the best on my own, with guidance from my ND and D.O. who are somewhat knowledgeable about lyme.
Seizure drugs - and I've tried them all - even at very tiny amounts have always triggered more seizures for me.
I also deal with a liver that does not process out the Cytochrome P-450 liver detox pathway drugs very well. But even drugs (such as neurontin) that do not use that pathway cause extreme muscle weakness, vertigo and thereby always trigger more seizures for me.
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I also deal with elevated mercury. Many lyme patients do. That alone can be a cause of seizures.
So attention to slow and steady metal detox is worth considering.
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I am not saying to avoid seizure drugs or seeing a good neurologist. I just hope you can find one. There must be some out there - if your LLMD does not know of any, ask your local support group leader.
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Avoiding gluten is one of the things that matters tremendously for me, too. If I even get a trace unknowingly, within 3 days I usually take an unexpected flight.
The gluten connection is discussed in the VRP article that I'll post below.
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And . . . after seizures - in addition to ARNICA homepathic . . . be sure to get your blood sugar to normal. Often low blood sugar can even trigger seizures.
After a seizure, often the blood glucose can be dangerously low. Typically, a low or no sugar diet is helpfulf or lyme. However, in an emergency such as in impending seizure or after seizures, it is vital to get sugar into the brain as quickly as possible.
And, if by chance, your cytochrome P-450 liver detox pathway is over loaded and thereby a buildup of porphryrins is a result, sugar can actually be life-saving.
Patients who have porphyria are more prone to seizures.
Thyroid and other endocrine dysfunction can also be connected. Be sure your adrenal support is in place and is supportive but not boosting.
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This is what helps me the most in the order of importance:
Arnica homeopathic 200c Biorin - right after a seizure to help prevent brain swelling and to settle the adrenal shock.
Magnesium to bowel tolerance (or shots or IV)
B-6
Fish oil
L-Taurine
DMG (dimethylglycine): 50-200 mg/day
Calcium and other minerals to balance
B-complex
Weekly massage
Liver support
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Seizures can be caused by many things. Lyme is a common contributor as can be any infection that affect the brain and stresses the liver with toxins.
Liver support is vital but I'll not go into that as if you are on a lyme protocol, you probably know all about that.
Be sure to avoid even a the smallest particle of aspartame/Nutrasweet/Equal as that is neurotoxic and can trigger seizures in some people.
MSG, too. Avoid in all its names - you can google for those.
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SLEEP is vital. Rest the very instant you might feel that sleepy feeling hit or any sense of feeling unusual. That alone can prevent a seizure.
Soaking your feet in epson salts/warm water can also help magnesium get into your body.
Calming music can be very good for the brain and help the brainwaves correct themselves. Mozart, Haydn, or 3/4 time waltzes seem best.
Sometimes, playing a musical instrument can help. The harp and classical guitar top the list. Piano, too, or soothing wind instruments. If you can't play, listen.
Most of all, be sure not to over stimulate your senses. If adrenal deficiency is part of this, rest, darkness and quiet can be very helpful.
Listen to your body. This may be very complex, but just remember to first, listen to what your body needs.
I hope you find an easy and quick explanation. It could be something as easy as some new carpeting or paint exposure.
And, another note . . . the stuff just keeps coming (sorry) . . . it may be best to go scent-free for now. Many of the scented products for the house, laundry, shower can have toxic effects on the brain and overpower the endocrine system.
Now, I hope you've not keeled over from the overload here. Seizures can have MANY different causes and many people, around the world have them everyday.
It is very frightening but it need not be a mystery. I hope your LLMD can shine some light.
Effect of magnesium chloride and magnesium L-aspartate on seizure threshold in rats under conditions of dietary magnesium deficiency.
Spasov AA, Iezhitsa IN, Kharitonova MV, Kravchenko MS.
Institute of Pharmacology, Department of Pharmacology, Volgograd State Medical University.
We studied the effect of Mg-L-aspartate, MgCL2, and their combinations with vitamin B6, magneB6, and MgSO4 on seizure threshold in rats with dietary Mg2+ deficiency.
Mg2+ deficiency was followed by a decrease in the threshold dose of corazol (from 79.20 to 49.48 mg/kg), shortening of the latency of the first jerk (by 33.6%, p=0.012), and reduction of the time to the first episode of clonic seizures (by 32.6%, p=0.011).
Seizure threshold and latencies of the first jerk and first episode of clonic seizures increased over 3 weeks after peroral administration of Mg2+ salts.
The combination of Mg2+ salts and pyridoxine was most effective in this respect.
Protective effect of Crassostrea gigas extract on audiogenic seizures in magnesium deficient mice.
Bac P, Pages N, Dhalluin S, Tapiero H.
Department of Cellular and Molecular Pharmacology, CNRS URA 1218, Universite de Paris--Faculte de Pharmacie, Chatenay-Malabry, France.
Audiogenic seizures associated with loss of weight, prostration, piloerection, palpebral ptosis and motor deficiency were induced after sound stimulation of determined frequency and amplitude in magnesium-deficient DBA/2 mice.
These symptoms were maintained when standard diet conditions (1700 ppm Mg2+) were restored.
In contrast, mice were protected from audiogenic seizure in a dose related manner when Crassostrea gigas extract (JCOE) were added to the diet for 10 consecutive days.
Although a rational explanation for this protective effect has not yet been determined, it is assumed that it might be due to a chelating complex formed between Mg2+ and taurine, which enhance the uptake of Mg2+.
This article reviews research on the use of diet, nutritional supplements, and hormones in the treatment of epilepsy.
Potentially beneficial dietary interventions include identifying and treating blood glucose dysregulation, identifying and avoiding allergenic foods, and avoiding suspected triggering agents such as alcohol, aspartame, and monosodium glutamate.
The ketogenic diet may be considered for severe, treatment-resistant cases. The Atkins diet (very low in carbohydrates) is a less restrictive type of ketogenic diet that may be effective in some cases.
Nutrients that may reduce seizure frequency include vitamin B6, magnesium, vitamin E, manganese, taurine, dimethylglycine, and omega-3 fatty acids. Administration of thiamine may improve cognitive function in patients with epilepsy.
Supplementation with folic acid, vitamin B6, biotin, vitamin D, and L-carnitine may be needed to prevent or treat deficiencies resulting from the use of anticonvulsant drugs. Vitamin K1 has been recommended near the end of pregnancy for women taking anticonvulsants.
Melatonin may reduce seizure frequency in some cases, and progesterone may be useful for women with cyclic exacerbations of seizures.
In most cases, nutritional therapy is not a substitute for anticonvulsant medications. However, in selected cases, depending on the effectiveness of the interventions, dosage reductions or discontinuation of medications may be possible.
PMID: 17397265 [PubMed - as supplied by publisher]
Med Hypotheses. 2006;66(5):969-74. Epub 2006 Jan 24. Links
Might calcium disorders cause or contribute to myoclonic seizures in epileptics?
Thiel R.
Center for Natural Health Research, Down-Syndrome Epilepsy Foundation, Arroyo Grande, CA 93420, USA. [email protected]
Although epilepsy is not rare, many epileptic conditions are considered to be idiopathic and the related seizures of unknown origin. It does appear that different types of seizures are caused by differing mechanisms.
This paper discusses scattered case reports involving problems with calcium metabolism and the thyroid, and/or the parathyroid glands concurrent with seizures that support the position that calcium control mechanisms may have been involved in causing seizures in those patients.
This paper hypothesizes that calcium levels can cause, or at least contribute to myoclonic (jerk) seizures, as well as to possibly infantile spasms.
As these conditions are difficult to treat medically, this paper suggests that nutritional interventions, such as supplemental calcium, magnesium and/or vitamin D, might well be considered as an option as a first-line treatment in those with these types of epileptic disorders.
The nutritional recommendations also would apply for those who have seizures concurrent with Down syndrome.
Seizures can be attributed to a number of causes including metabolic abnormalities, infections, nutritional deficiencies, or trauma. Emotional stress also increases the frequency of seizures. But most seizures occur due to unknown reasons.
-Full article at link.
==========================
This article has many excellent points. I voice only two cautions.
It may just be my unique reaction, but I would be cautious of GABA (for myself, I have tried many times and it seems to lower the seizure threshold) . . .
The article also suggests Kava Kava. Be very cautious and get from the very best source. There have been some reports of liver toxicity - but that seems to have been otherwise explained upon further examination.
Still, as lyme really stresses the liver and the treatment can be hard, too, Kava may not be the best choice. There are better ones for those who have stressed livers. However, since the article above mentions it, here are some things to know about it.
As you see a ND, if you also get acupuncture, be sure to go for the calming approach. Some L.�c's I've seen were so into the "boost" approach. It took years to find one that understood the difference between boost and support. But, then again, they'd never seen anyone with advanced lyme before.
===========
Again, the very best of luck. This can become history. Really.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Ooops. Sorry. I thought I was finished. Promise this is the last one.
Here are two books that really help me.
When I could afford it, the protocol outlined in Dr. Zhang's book stopped seizures for me. The longest I could do that was for a few months here and a few months there. Each time, it was fabulous.
Now, figuring out how to do this on less money, I'm just beginning to explore the Buhner book.
I've been on andrographis for about a month now, finally up to the full dose.
It seems to dampen the seizure threshold, too. I;m much more tired, though. But, if it helps my brain not rocket out with every apt. door that closes around here, I'll go with it for a while.
As you mentioned you have a ND, this may be good to share.
Also, Scullcap tincture helps a lot (but I do get the hangover effect so watch out and start with just a few drops in evening).
I do have a couple of suggestions based on hubby's experiences -- he used to have what I called seizure-like episodes at least 2 or 3 times a day for 3 or 4 years.
In hubby's case I think these episodes were probably mostly due to Babesia and Bartonella although I am sure the Lyme is also a factor.
Myoclonic type movements definitely seem more related to Bartonella in his case.
If you supplement with B6, and especially if you use P5P (pyridoxal-5-phosphate is the activated form of B6), I would suggest adding in Resveratrol. The Resveratrol will prevent the B6 from converting to quinolinic acid which is a neurotoxin. See the Healing Lyme book for more info on this.
I would also test for hypercoagulation -- the HEMEX test is best although expensive. If there is a bloodflow issue this could definitely be contributing to your seizure problem and this will also make antibiotics less effective. There are many items which can be used to help with hypercoagulation -- everything from heparin to systemic enzymes such as Wobenzyme.
Hubby has been on either IV or oral Ativan for over 5 years. Not really that effective as a preventative, but it used to work to stop these seizure-like attacks.
Hubby started Lyrica at a very low dose (25 mg every 8 hours) about 6 months ago. This seizure med seems to be working better than any other one he has tried -- works by a different mechanism. It is my understaqnding that it works like a calcium channel blocker for the brain instead of the heart. Basically it is helping balance calcium/magnesium levels in the brain.
The combination of Lyrica and more effective treatment for Bartonella definitely seems to be making a drastic difference for hubby.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Bea,
Thanks for clarifying this:
" . . . If you supplement with B6, and especially if you use P5P (pyridoxal-5-phosphate is the activated form of B6), I would suggest adding in Resveratrol.
The Resveratrol will prevent the B6 from converting to quinolinic acid which is a neurotoxin. See the Healing Lyme book for more info on this. . . . " end quote
posted
Wow such great information. I knew I could count on all of you. I have been meaning to get my hands on a copy of the Healing Lyme Book so now I definitly will. I will print out what you said and share it with my dr.
I am presently reading Unknown Cure and just worked my way thru The Lyme Disease Solution. Sometimes you just get an overload of info tho so I am reading a Christian novel in between to relax and balance things out.
Bea: When I looked up HEMEX test all I got was a lab. What specific test are you talking about. Your husband sounds so much like me.
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posted
You are correct -- Hemex is the name of the lab.
The test is the ISAC panel -- Immune System Activation of Clotting. I think it costs around $400 although insurance will pay some on the test.
Many infections -- not just tickborne ones -- can be viral or bacterial -- cause the blood to become thicker. Basically the bugs hide out in the bloodstream.
A cheaper test is simply to test for excess fibrinogen -- this is one of several markers that the ISAC test measures.
Often PT and PTT tests which measure clotting will be normal but either fibrinogen or one of the other markers could be abnormal.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Lynnic,
Wouldn't a neurologist running an EEG be able to tell if you were having seizures or not.
I know that before my lyme diagnosis, I was sent to a neuro and he ran an EEG. He said I was having "mini seizures" when they would flash the lights.
At the time, he said he thought it was "migraine disease". I had heard of migraines but wasn't quite sure what this migraine "disease" was. But he followed it up by saying something else was going on.
With that said, I would think they would still be able to run that test and get a pretty good idea on what is going on for you.
On a side bar, can anyone tell me what the patient feels inside while a seizure is going on? I've had some strange things happen and it wouldn't be a stereo typical seizure 'by the book'. But would be very interested in what you are the person with the seizure is feeling or seeing happen while in your own body. Still trying to sort out some things in my own life.
Thanks for any help.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
EEG's are like any other test -- subject to interpretation.
Hubby has had similar findings to Keebler -- all muscle movement is discounted as artifact on standard EEG's. Hubby has never had "seizure-spikes" on routine EEG's -- has had several abnormal EEG's due to slowing in the temporal lobe though.
QEEG definitely showed much more brain dysfunction than showed up on a standard EEG.
It depends on what part of the brain is involved somewhat -- the deeper in the brain the problem then the less likely it will show on a standard EEG is what I have been told.
Hubby has in the past (5 or 6 years ago before treatment) had the postictal fatigue and confusion following his seizure-like episodes. Also loss of bowel and bladder control on occasion.
What he has now are not true seizures as he can continue to talk and does not lose consciousness. Very debilitating nonetheless.
One bloodtest some docs use to determine if seizures are occurring is to test Prolactin levels. Hubby's levels doubled following seizure-like episodes, but it was still within the normal range -- very high normal I think -- so of course standard docs said it is not seizures.
Marnie's post regarding cortisol and DHEA levels was interesting. I definitely would agree that stress could be a seizure trigger.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Bea,
Thank you for your information. As I said, I was "diagnosed" with "mini seizures" since they were saying I had seizure activity when they flashed the lights in the EEG, but to be honest, that meant very little to me.
I do not feel I've had anything happening that would have me saying that this appears to be seizure like. But this last weekend, I did have a strange episode like none other I've had before, so was trying to figure out if it MIGHT have been seizure since I ended up passed out on the floor by the end with little recollection and just wondering what is going on.
Guess I'll never know for sure, but hopefully that doesn't happen again. I actually was cleaning the bathroom at the time, so wondered if one of the cleaners triggered something.
Thanks again for your input.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Marnie
Frequent Contributor (5K+ posts)
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posted
Bea..."Hubby's levels doubled following seizure-like episodes, but it was still within the normal range -- very high normal I think"
Prolactin (in mice) spontaneously restored the myelin sheath (insulation around the nerves - made of amino acids).
Curious about the spike in prolactin following a seizure-like episode!
Esp. since my son has a hx of seizures (on Lamictil now - depakote caused "fatty liver") and his cholesterol is on the low side.
Lack of enough amino acids? Which one(s)?
...I just remembered...the ketogenic diet...ever see the movie with Meryl Streep called "First Do No Harm"? Son with nonstop seizures cured via this John's Hopkins diet.
And yes...hypomagnesia can be a cause of seizures too (son takes Epsom salt-Na bicarb baths on occasion).
IV Mg is given for the seizures related to the "toxemia" of pregnancy which happen with an hour after delivery.
Re: "thick blood"...did you see my post on prothrombin? It some instances it can sub for heparin! Whoa.
Curious too about Na citrate...esp. as it relates to the malaria parasite...
Remember when Troutscout said Alka Seltzer made him feel better?
[ 20. September 2008, 12:24 PM: Message edited by: Marnie ]
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