Questions

May 27, 2002

Debbie, my doctor told me " you have a liver disease " but " you are not

ill " (i was on prednisone at the time)....i've been off for two

months. i try not to think about if and when i will have

a " relapse " ...i can't help it, i hate what prednisone did to me-it's

soooo hard! kathy

> > Hi everyone

> >

> > I hope you are all okay today. I have a few little

> > questions to throw your way and would be grateful for

> > any answers. My bloodwork has been fine for a little

> > while but I still get tired a lot - is this normal to

> > feel the tiredness even when liver levels are not

> > elevated. Also could anybody tell me what the liver

> > cleansing diet is. Last question is I have a friends

> > wedding to attend soon and to be honest I havent drank

> > no alcohol at all since being diagnosed with AIH

> > simply because I wouldnt like to add insult to injury,

> > but as you know at weddings there is always a toast

> > and wonder if we are allowed to have a drink or not --

> > I just dont want to be awkward and ask for a non

> > alcoholic beverage but dont know if this will be

> > harmful.

> >

> > Have a happy day all of you.

> >

> > Gill

> > AIH 99

> > UK

> >

> > __________________________________________________

> >

June 4, 2002

Dee-Tea Tree oil is used topically for yeast infections of the

skin/hair/nails and

can be used in diluted form for colonics - I;ve read about using a tampon with

tea tree oil (diluted) and inserting it to help w/vaginal yeast issues.

Good luck - I had you same problem and now the yeast is attacking my scalp

and skin and tongue instead of vaginally. This yeast is really a bear!

Ms. Lib

June 10, 2002

Hiya Mom and

I suggest you get " Prescriptions for Nutritional Healing " by Balch, MD. He

has an extensive protocol for Epilepsy, some of which we use with my son,

Charlie, who is on both Depakote and Lamictal and still not totally seizure

free.

It is a good idea to find a doctor who will support you on this journey

and try to find the underlying cause of 's seizures. Charlie is out of

it for at least two days after a gran mal seizure.

mjh

In a message dated 6/10/02 8:47:45 AM Eastern Daylight Time,

myplace@... writes:

> Hello-

> I am new to this group and searching for other peoples experiences.

> My daughter is 14 years old.

> When she was 12 she had her first seizure-

> I did not observe the actual seizing part, I found her unconscious on the

> kitchen floor and it took her 45 minutes to be able to talk or even

> recognise me.

> We went to a neurologist, she was on Depakote 250 three times a day for 18

> mos. She had no other seizures.

> She had been off all medications with no seizures for a year-

> untill friday. She had a HUGE seizure(well, huge to me!)

> on friday after noon. I saw this one. It scared me. She convulsed, legs,

> arms and head for 2 minutes, she was still and silent(I was afraid she was

> dead) for another 60 seconds, and it took her 40 minutes before she could

> talk again.

> We know the depakote makes her feel like crap.

> She gained 40 pounds in the first year of being on it.

> We would like to try and start with diet, vitamins, or other methods of

> managing this but I just dont know where to start.

> I have been searching on the web and seem to find some references to Vitamin

> B complexes and magnesium.

>

> Anybody got any suggestions?

> Thank you so much.

> Lori

> Mom to !

>

> Living and loving life. Happy, Joyous and free.

>

June 10, 2002

Dear Lori, Start with the book Prescription for Nutritional Healing by Balch. It

has the basics in it,pages 352 to 355. The book says " In older children,

epilepsy is more likely to result from genetic factors, infections of the

certral nervous system, or head injury. " Does any of that ring a bell with you?

Gail Pike

" Lori Ransom " <myplace@...> wrote:

>Hello-

>I am new to this group and searching for other peoples experiences.

>My daughter is 14 years old.

>When she was 12 she had her first seizure-

>I did not observe the actual seizing part, I found her unconscious on the

>kitchen floor and it took her 45 minutes to be able to talk or even

>recognise me.

>We went to a neurologist, she was on Depakote 250 three times a day for 18

>mos. She had no other seizures.

>She had been off all medications with no seizures for a year-

>untill friday. She had a HUGE seizure(well, huge to me!)

>on friday after noon. I saw this one. It scared me. She convulsed, legs,

>arms and head for 2 minutes, she was still and silent(I was afraid she was

>dead) for another 60 seconds, and it took her 40 minutes before she could

>talk again.

>We know the depakote makes her feel like crap.

>She gained 40 pounds in the first year of being on it.

>We would like to try and start with diet, vitamins, or other methods of

>managing this but I just dont know where to start.

>I have been searching on the web and seem to find some references to Vitamin

>B complexes and magnesium.

>

>Anybody got any suggestions?

>Thank you so much.

>Lori

>Mom to !

>

>Living and loving life. Happy, Joyous and free.

>

June 10, 2002

Lori,

Did the doctor ever determine for you why your daughter has an epileptic

disorder? Has the doctor determined what it is that triggers the

seizures? If not, I highly suggest you seek a second opinion with

regard to your daughter's care. You need to identify the source of the

problem and take steps to resolve it. Too often, in my opinion, the

consequences of the problem (seizures) are addressed rather than what

causes them. Consequently, the REAL problem is not addressed - simply

masked with drugs. Sometimes the drugs used to prevent seizures from

occurring bring with them adverse side effects which can in themselves

be very damaging. It really helps to look at the " big picture " with

regard to one's health and know your options for making things better.

If you haven't toured our Bookmarks section, I encourage you to do so.

You may find a lot of useful help there. One website, s-Reiter ,

treats nothing but epilepsy and does ongoing research into the

disorder. Check out the latest research. You can even submit personal

questions. The head of therapy research responds to all questions.

But, that is not all. If you so desire, the clinic will review your

child's medical records and give you an evaluation at no charge.

There is a lot you can learn online from our Bookmark section. Please

do not hesitate to use it.

Lamar

Lori Ransom wrote:

> Hello-

> I am new to this group and searching for other peoples experiences.

> My daughter is 14 years old.

> When she was 12 she had her first seizure-

> I did not observe the actual seizing part, I found her unconscious on

> the

> kitchen floor and it took her 45 minutes to be able to talk or even

> recognise me.

> We went to a neurologist, she was on Depakote 250 three times a day

> for 18

> mos. She had no other seizures.

> She had been off all medications with no seizures for a year-

> untill friday. She had a HUGE seizure(well, huge to me!)

> on friday after noon. I saw this one. It scared me. She convulsed,

> legs,

> arms and head for 2 minutes, she was still and silent(I was afraid she

> was

> dead) for another 60 seconds, and it took her 40 minutes before she

> could

> talk again.

> We know the depakote makes her feel like crap.

> She gained 40 pounds in the first year of being on it.

> We would like to try and start with diet, vitamins, or other methods

> of

> managing this but I just dont know where to start.

> I have been searching on the web and seem to find some references to

> Vitamin

> B complexes and magnesium.

>

> Anybody got any suggestions?

> Thank you so much.

> Lori

> Mom to !

June 10, 2002

HI Lamar,

Thank you for your response.

****Did the doctor ever determine for you why your daughter has an epileptic

disorder?

Believe it or not- the first neurologist we saw said it was perfectly normal

for a girl her age to have a seizure-he had seen it happen many times. He

said we should be glad that it took 12 years for the first seizure and then

it may be 12 years before we see another one.He found nothing abnormal on

her EEG.

We found that unaccepable and sought out a second opinion.

What an ordeal it was to find a doctor willing to do a second opinion.

FINALLY, we found one in Childrens hospital in Buffalo, and she found

seizural activity on the EEG and prescribed the depakote. We went back to

see her every three months for EEG and script refill. She offered no

explanation as to why the seizure happened. After 18 mos. we decided to wean

her off the depakote and see what happened. One year off all medications

seizure free.

***Has the doctor determined what it is that triggers the

seizures?

NO- The doctors offered no opinion. WE know that the night before her first

seizure and the nite before the second one-two years later, she had less

that normal sleep. Much less.

****Too often, in my opinion, the

consequences of the problem (seizures) are addressed rather than what

causes them. Consequently, the REAL problem is not addressed - simply

masked with drugs.

EXACTLY!!! I agree 100%!!

Her dad and I do not want her to be drugged up again. We think that because

we had a year seizure free, and the sleep being deprived, we

DONT want to get back into that drugs cycle. Of course- If she is having

seizures regularily, we would consider again medication, but at this point

we are not convinced meds are the right choice.

***If you haven't toured our Bookmarks section, I encourage you to do so.

I am doing that right now.

Thank you for all the suggestions.

Take care.

Lori

Lamar

Lori Ransom wrote:

> Hello-

> I am new to this group and searching for other peoples experiences.

> My daughter is 14 years old.

> When she was 12 she had her first seizure-

> I did not observe the actual seizing part, I found her unconscious on

> the

> kitchen floor and it took her 45 minutes to be able to talk or even

> recognise me.

> We went to a neurologist, she was on Depakote 250 three times a day

> for 18

> mos. She had no other seizures.

> She had been off all medications with no seizures for a year-

> untill friday. She had a HUGE seizure(well, huge to me!)

> on friday after noon. I saw this one. It scared me. She convulsed,

> legs,

> arms and head for 2 minutes, she was still and silent(I was afraid she

> was

> dead) for another 60 seconds, and it took her 40 minutes before she

> could

> talk again.

> We know the depakote makes her feel like crap.

> She gained 40 pounds in the first year of being on it.

> We would like to try and start with diet, vitamins, or other methods

> of

> managing this but I just dont know where to start.

> I have been searching on the web and seem to find some references to

> Vitamin

> B complexes and magnesium.

>

> Anybody got any suggestions?

> Thank you so much.

> Lori

> Mom to !

June 10, 2002

Dear Lori,

Depakote was a terrible drug for me. Not only did it not control my seizures I,

too, gained a lot of weight and also lost a significant amount of hair. My

doctor switched me to another drug which was even worse, though I lost a lot of

weight on it, and all I can say is that I'm not eager to get on any more drugs!

What you wrote reminded me of my experience. During the course of my AED's, a

GYN checked my levels of B-12, iron, and did another nutritional panel. My

neurologist vehemently denied that AED's cause nutritional deficiencies, but I

had low levels of B-12, magnesium, chromium, folic acid, manganese, zinc (which

may have been due to too much copper), iron and some other nutrients. All of

this is to say that, I think it would be wise to find someone who will check

these things for your daughter, as well.

B-complex deficiencies have been implicated by many AED's, and it's possible

that your daughter's use of Depakote could have caused some problems that are

not remedied in the normal course of our diet. We also learned that the high

mineral content of our well water may have further upset the balance of minerals

in my system. A further thought is that the estrogenic content of many foods

these days may have upset your daughter's hormonal balance -- seizures often

begin or get worse during puberty.

I hope this is helpful to you. It is awful to have seizures as a teenager, when

peer acceptance is so important!

Best wishes,

Carrol

Lori Ransom <myplace@...> wrote: Hello-

I am new to this group and searching for other peoples experiences.

My daughter is 14 years old.

When she was 12 she had her first seizure-

I did not observe the actual seizing part, I found her unconscious on the

kitchen floor and it took her 45 minutes to be able to talk or even

recognise me.

We went to a neurologist, she was on Depakote 250 three times a day for 18

mos. She had no other seizures.

She had been off all medications with no seizures for a year-

untill friday. She had a HUGE seizure(well, huge to me!)

on friday after noon. I saw this one. It scared me. She convulsed, legs,

arms and head for 2 minutes, she was still and silent(I was afraid she was

dead) for another 60 seconds, and it took her 40 minutes before she could

talk again.

We know the depakote makes her feel like crap.

She gained 40 pounds in the first year of being on it.

We would like to try and start with diet, vitamins, or other methods of

managing this but I just dont know where to start.

I have been searching on the web and seem to find some references to Vitamin

B complexes and magnesium.

Anybody got any suggestions?

Thank you so much.

Lori

Mom to !

Living and loving life. Happy, Joyous and free.

June 10, 2002

Patti

Who ordered these tests and which lab provided the analysis?

By the way, I get great control of EBV and CMV and others with

officinalis tincture + l-Lysine.

mjh

In a message dated 6/11/02 12:43:59 AM Eastern Daylight Time, patti@...

writes:

>

> I did have extensive diagnostic tests done for parasites (negative),

> candida (positive), heavy metals (high mercury) and a nutritional profile

> which showed some common deficiencies among those with seizure disorders &

> shy;

> in particular, consistently high eosinophils and low lymphocytes, occasional

> low carbon dioxide and high phosphorous, frequent herpes simplex infections,

> positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen,

> high folic acid and high B-12, low cortisol, low taurine, low tyrosine,

> problems with the Krebs cycle (low citrate, high citric accumulation), low

> glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low

> vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct

> those deficiencies and had several DMPS treatments to chelate the mercury.

> She is much healthier now & shy; fewer respiratory infections, fewer problems

> with allergies, more energy.

>

June 10, 2002

Hello Lori,

I read your message about your daughter¹s seizures and, since my daughter

has had a similar experience, I thought it might be of interest to you. My

daughter also had her first seizure at age 12 grand mal or tonic-clonic

during math class. This was just a few months before menstruation and I

strongly suspect a connection, though her neurologist would only admit that

estrogen might exacerbate a seizure disorder, not cause it. There are many

studies confirming the excitatory effect of estrogen on the brain. The

hormone association is magnified by the fact that my mother was prescribed

DES (diethylstilbestrol- a synthetic estrogen) when she was pregnant with

me, which has had many deleterious effects on the offspring - and there are

studies being conducting now on possible third generation effects. Just

something else to complicate the picture!

Anyway, we had the typical tests - normal CAT scan and MRI, but three

seconds of spike poly-spike activity on the EEG confirmed the epilepsy

diagnosis. She too was on depakote for one year, then slowly weaned and

completely off of it for nine months and then had another seizure. She began

depakote again and had the typical weight gain (20 lbs.) and then began

taking topamax and discontinued depakote. The weight just melted off of her

(she was small to begin with), and she has not had any severe side effects

(she is on a fairly low dose, 125 mg. morning and night), though, of course,

I would prefer that she did not have to take it at all. She is 18 and

driving now and leaving for college shortly, so that complicates the matter

a bit. The fact that she has had so few seizures is, indeed, a blessing,

though it prohibits any experimentation with supplements since I cannot add

this or delete that to see the effect - like your daughter, she may go 9

months or a year before having another seizure.

I did have extensive diagnostic tests done for parasites (negative),

candida (positive), heavy metals (high mercury) and a nutritional profile

which showed some common deficiencies among those with seizure disorders

in particular, consistently high eosinophils and low lymphocytes, occasional

low carbon dioxide and high phosphorous, frequent herpes simplex infections,

positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen,

high folic acid and high B-12, low cortisol, low taurine, low tyrosine,

problems with the Krebs cycle (low citrate, high citric accumulation), low

glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low

vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct

those deficiencies and had several DMPS treatments to chelate the mercury.

She is much healthier now fewer respiratory infections, fewer problems

with allergies, more energy.

I have even thought about birth control pills to suppress her own

hyperactive estrogen levels, but worry about giving her yet another drug,

especially considering my exposure to synthetic estrogens. It is so hard to

know what to do sometimes and I can confirm an oft repeated theme on this

list- mainstream neurologists are interested in finding drugs to treat

seizures not in discovering underlying causes. You have to read (this list

is an excellent resource) and search for doctors who will entertain

alternative ideas, tell them which tests to order and why (bring supporting

literature, etc.). Just keep persevering!

This is probably more information than you bargained for, but I just

remember wishing I could find others with circumstances similar to my

daughter¹s, especially in those early years. Please feel free to email me

privately if you would like any further information.

Best of luck to you and your daughter,

Patti

June 10, 2002

Patti -- Thanks for sharing your experience! Just

curious, how and where did you get such extensive

testing done? Even visiting several naturopaths, a

homeopath and a holistic doc, we've not had many of

these tests done.--D

--- Patti <patti@...> wrote:

> I did have extensive diagnostic tests done for

> parasites (negative),

> candida (positive), heavy metals (high mercury) and

> a nutritional profile

> which showed some common deficiencies among those

> with seizure disorders

> in particular, consistently high eosinophils and low

> lymphocytes, occasional

> low carbon dioxide and high phosphorous, frequent

> herpes simplex infections,

> positive Epstein-Barr mono spot, high

> anti-thyroglobulin, high estrogen,

> high folic acid and high B-12, low cortisol, low

> taurine, low tyrosine,

> problems with the Krebs cycle (low citrate, high

> citric accumulation), low

> glutathione, low sulfate/creatinine ratio, low

> magnesium, high copper, low

> vitamin E and Coenzyme Q10, low EFAs.

__________________________________________________

June 10, 2002

Hello DeEtte- I guess I have been fortunate to have a somewhat compliant

primary care physician who has ordered some of the tests (at my urging). He

monitored the usual chem 28 plus CBC values but also ordered the serum

hormone tests for thyroid, estrogen, progesterone, etc., and has ordered

separate tests for B12, folate, iron. The other, more esoteric tests were

ordered by an environmental doctor. He is D.O. and had experience with a

patient who was literally poisoned with mercury (from a lab directly above

her office). Anyway, that's why we connected with him originally - and he

ordered the toxic elements tests from Doctor's Data (www.doctorsdata.com)

as well as the candida test (not sure which lab, I'll have to look this one

up- may have been Great Smokies) and an extensive vitamin-metabolic profile

/ oxidative stress profile / fatty acids / amino acids analysis / urine

organic profile - all of this performed by MetaMetrix Clinical Laboratory.

He ordered all tests based on my daughter's history and symptoms and every

one of them revealed some problem that we were able to address. I live in

Texas, but he seems very " well-networked " - it may be possible that he knows

of a " likeminded " physician in your area??

Patti

On 6/10/02 11:47 PM, " DeEtte Person " <annarebecca85259@...> wrote:>

Patti -- Thanks for sharing your experience! Just

> curious, how and where did you get such extensive

> testing done? Even visiting several naturopaths, a

> homeopath and a holistic doc, we've not had many of

> these tests done.--D

>

> --- Patti <patti@...> wrote:

>

>> I did have extensive diagnostic tests done for

>> parasites (negative),

>> candida (positive), heavy metals (high mercury) and

>> a nutritional profile

>> which showed some common deficiencies among those

>> with seizure disorders ?

>> in particular, consistently high eosinophils and low

>> lymphocytes, occasional

>> low carbon dioxide and high phosphorous, frequent

>> herpes simplex infections,

>> positive Epstein-Barr mono spot, high

>> anti-thyroglobulin, high estrogen,

>> high folic acid and high B-12, low cortisol, low

>> taurine, low tyrosine,

>> problems with the Krebs cycle (low citrate, high

>> citric accumulation), low

>> glutathione, low sulfate/creatinine ratio, low

>> magnesium, high copper, low

>> vitamin E and Coenzyme Q10, low EFAs.

June 11, 2002

Patti!!!!

Thank you!

Lots of great information.

I have a couple questions for you-

Has your daughter only had 2 seizures?

Any idea where I can find a doctor with an open mind?

or where to start looking for one?

Also-

We did put on low dose birth control 3 months ago becvause her LC?

hormone was 3 x's higher than it should be. She had had one period then a

year without and dr said the depakote would do that. She has had 3 regular

ones now and is feeling better in that part.

How did you get the dr to change to topamax?

Thanks so much.

Lori

Living and loving life. Happy, Joyous and free.

-- Re: [ ] Re: Questions