Re: Our daughter, Lydia...

July 24, 2001

sounds like a plan, and a great one!

Kathy

[ ] Our daughter, Lydia...

> ALL:

>

> I've been hanging around here of late, mostly lurking, but now I have

> something to say.

>

> Lydia is 6 years old and has intractable epilepsy. Onset was sudden

> and unexpected on 8/12/2000. Her seizures are complex-partial, but

> surgery has been ruled out due to their non-dominant, multifocal

> nature. She is now on her sixth different AED combination.

> Monotherapy has never worked. Her medical and developmental history

> was completely normal prior to onset. We suspect the etiology is

> vaccine-related, but UNTIL YESTERDAY, no local physician would agree

> with us.

>

> The bottom line is for the last 11 months we have pretty much stuck

> to mainstream medicine, having been followed by a pediatric

> neurologist here at home, plus further evaluation by pediatric

> epileptologists in Miami, FL.

>

> We felt hamstrung due to a total lack of local practitioners from the

> alternative/complementary side of the house. We had resigned

> ourselves to having to make some difficult decisions as to how best

> to spend our meager resources out of state. As you all know, trying

> to find THE best place to go, or THE best protocol to use for your

> particular situation can be an all-consuming experience in its own

> right. I think I have described our current attitude in a prior post

> as feeling " frozen " , not really knowing what the best thing to do is.

>

> Yesterday, we finally got a little guidance, alot of legitimation for

> the nutritional approach, and some direction, something to try...

> Many of these things you all are already well aware of, and I've read

> discussions regarding them, but without someone to give us a

> kickstart, we were scared to try any of them. After all, so many

> things are so contradictory, and there are so many ways one thing

> will affect another when they are used in combination, that the

> expert kickstart, at least in our case, was exactly what we needed at

> this point in time.

>

> We spent almost four hours in a nutritional consultation. The doctor

> we saw was Blaylock, author of " Excitotoxins: The Taste That

> Kills " . This past February, Dr. Blaylock retired his neurosurgery

> practice to open a clinic called " Advanced Nutritional Concepts " .

> Dr. Blaylock has become interested in epilepsy, autism, etc..., and

> has some very persuasive explanations about the biochemistry

> involved. He was able to tie together, for example, some of the

> complex and intricate relational ties between potential vaccine

> damage to the brain, toxic insults, immune and metabolic reactions,

> the vicious cycle of neuron death or neuron hyper-exciteability that

> ensues, etc..., all based on solid biochemical evidence. It was a

> most enlightening meeting from an educational perspective, most of

> it, in fact, went way over my head, but the big picture was his

> emphasis, so I did comprehend some of it, at least.

>

> His treatment recommendations for Lydia are as follows:

>

> (1) He ordered the following lab tests: (a) gluten/casein peptide

> test; ( candida intensive culture with MIC sensitivities; © amino

> acid analysis - plasma; (d) toxic element clearance profile

>

> When those results are received, we will come back in for F/U, and

> additions, deletions, modifications, and any needed fine tuning will

> be done to the initial treatment recommendations, which are:

>

> (1) massive dietary changes; it seems to be a sort of modified G/C

> free diet;

> (2) Brain Support - his own compound which includes DHA, acetyl-l-

> carnitine, ginkgo biloba, and a small amount of choline;

> (3) Kirkman Labs Super Nu-Thera Powder - includes Vitamin A, Vitamin

> D, Vitamin C, Vitamin B1, Vitamin B2, Vitamin B6, Niacinamide,

> Vitamin B12, Pantothenic Acid, Vitamin E, Folic Acid, Biotin,

> Magnesium, Zinc, Manganese, Selenium,

> (4) Alpha-Lipoic Acid

> (5) Methylcobalamin

> (6) Taurine

> (7) Quercetin

>

> We are anxious and eager regarding this turn of events, and hopefully

> if there is someone else who sees this list who finds themselves in a

> similar dilemna to ours, this post will be helpful.

>

> Tim

>

> _

>

July 24, 2001

Good luck to you tim and your family. It is soooo important to find someone

who you feel can really help you in this feild of alternative therapy.God

Bless your daughter.

Darrell

July 25, 2001

Hi Tim,

I read your Post and also 's Post concerning the problem that both of you are experiencing with your daughter's Seizures and sincerely hope that both of you are able to find out what the problem is.

Arnold Gore mentioned how Extremely important Regular Bowel Movements are to all of us. I once spoke with a Korean Acupuncturist and he told me that when he first began studying Acupuncture in Korea they took Rabbits and squeezed the Bowels a fraction every day which produced Seizures. The more that they continued to squeeze the Bowels the more frequent the Seizures.

After he told me this I went home and looked in the Encyclopedia to see just what the Bowels looked like. After I did it was easy to understand how something like the Bowels with all the "Twists and Turns," could be so important.

In conclusion, "The Medical Doctors," don't study or learn to find the problem that causes Seizures, but rather they study how to "Treat or Mask," the problem. For example children with Seizures may go to a Medical Doctor who runs the standard tests, EEG's, MRI's, etc and discovers that a certain portion of the Brain is not working properly, The Doctor then may even perform surgery and take out that portion of the Brain to remove the symptom which is Seizures. The problem however, may have been in the Diet or Bowels. We can be thankful however, that nowadays people are depending less and less on the Medical Profession and researching problems on their own, which has resulted in people being Drug Free and Seizure Free.

Take Care,

Myers

[ ] Our daughter, Lydia...

July 25, 2001

>We can be thankful however, that nowadays people are depending less

>and less on the Medical Profession and researching problems on their

>own, which has resulted in people being Drug Free and Seizure Free.

JOHN:

I am interested in finding every single case of what you describe

above.

One of my goals, if these nutritional therapies work for Lydia, is to

amass a library of these cases so that people can be armed with

information when they are faced head-on with epilepsy. Even the

staunchest of the staunch in the mainstream medical community can be

forced through sheer numbers to reach a point of recognition, if not

acceptance. And that is what I intend to do in my medical community

when [...prayerfully...] the time comes.

In other words, a single anecdote or two or three is one thing; but

thousands, all neatly compiled in a searchable electronic form is

something else entirely.

Let me emphasize that I'm not interested in a one or two sentence

statement. It has to be in a form that will easily be recognized by

physicians as a CASE REPORT instead of an ANECDOTE. That is their

distinction, not mine, but I can play the game using at least some of

their rules. So anyone and everyone can compose and/or copy these

detailed narrative case reports as they feel led, and email them to

me.

Tim

July 25, 2001

Dear Tim,

If you can dream it; you can do it. Almost all of my life I have depended on The Medical Profession for direction concerning the control of Seizures. Fortunately I have had extremely good luck with my Doctors, and have been Seizure Free on Medication.

However "10" years ago things took a turn for the worse. It was at that time that all indications were my Doctor showed little or No interest in me whatsoever. Finally, one day I went in and picked up my Medical Records which also included my Blood Tests which is required evey "6" months.

As my wife and I headed toward the office of a New Doctor, I began reading the Medical Records and glancing at the Blood Tests. I was SHOCKED!!!!

The Blood Test revealed the following:

1. - My Alkaline Phosphate - Lactate Dehydrogenate were out of range.

2. - My Cholesterol was out of range.

3. - My White Blood Cells were out of range.

4. - My Monocytes, absolute were out of range.

5. - My HDL - Cholesterol and LDL Cholesterol were out of range.

6. - My Phenobarbital was out of range. (Toxic to Liver)

I began to wonder how I could still be alive.

Well, we continued to our appointment with our new Doctor. "1" year later he suggested that I reduce the Phenobarbital (was taking "4" per day) to "3" per day. In the following "3" years he never once mentioned the other items.

In conclusion Tim, I Strongly Recommend that Every person who is on any type of Maintenance Medication to get "Blood Work or Blood Test," done Every "6" months and to tell the Doctor that they want a copy for themselves. After they receive their "Blood Tests," them to review it for themselves. Don't depend on Any Medical Doctor for Advice concerning these Blood Tests. It all sounds so negative but it is the absolute truth.

Take Care,

Myers

[ ] Re: Our daughter, Lydia...

>We can be thankful however, that nowadays people are depending less >and less on the Medical Profession and researching problems on their >own, which has resulted in people being Drug Free and Seizure Free. JOHN:I am interested in finding every single case of what you describe above.One of my goals, if these nutritional therapies work for Lydia, is to amass a library of these cases so that people can be armed with information when they are faced head-on with epilepsy. Even the staunchest of the staunch in the mainstream medical community can be forced through sheer numbers to reach a point of recognition, if not acceptance. And that is what I intend to do in my medical community when [...prayerfully...] the time comes.In other words, a single anecdote or two or three is one thing; but thousands, all neatly compiled in a searchable electronic form is something else entirely.Let me emphasize that I'm not interested in a one or two sentence statement. It has to be in a form that will easily be recognized by physicians as a CASE REPORT instead of an ANECDOTE. That is their distinction, not mine, but I can play the game using at least some of their rules. So anyone and everyone can compose and/or copy these detailed narrative case reports as they feel led, and email them to me.Tim_

July 28, 2001

In a message dated 7/24/01 1:28:43 PM Eastern Daylight Time, timsgolf@...

writes:

<<

We spent almost four hours in a nutritional consultation. The doctor

we saw was Blaylock, author of " Excitotoxins: The Taste That

Kills " . This past February, Dr. Blaylock retired his neurosurgery

practice to open a clinic called " Advanced Nutritional Concepts " .

Dr. Blaylock has become interested in epilepsy, autism, etc..., and >>

Tim,

What state is this doctor in?

July 28, 2001

>What state is this doctor in?

KAREN:

He is in , Mississippi.

Tim

July 29, 2001

Not sure if the following overview of our son, , fits the bill of what

you are asking for, but I trust you will find it of interest. We put this

together for his genetic specialists, at their request. He was diagnosed

with a rare metabolic disorder at 14 months of age, (respiratory chain

complex IV, cytochrome C oxidase deficiency - C.O.X.- mitochondrial

myopathy - French Canadian type we believe!) from a liver biopsy.

Regards,

& Savage.

AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (JULY 2001)

1. WAS: From birth - D.O.B. 19/9/95, (and possibly in the womb, as

commented numerous times about the strange repetitive movements, late in the

pregnancy) had serve uncontrollable myoclonic epilepsy - up to 40+

seizures per day of ½ to 3 min duration.

NOW: is now drug free (no anti-convulsants since June 1998), with the

occasional mild seizure (many so mild, that the casual observer is often not

aware he is having one - mouth pouting, slight rolling of the eyes,

involuntary swallowing or smiling, slight flicking of the head, shoulder or

one hand - an average of 4 to 5 per week), which don't leave him bombed out

afterwards, and he is obviously aware of what is happening around him during

them. At no stage when was on any combination of anti-convulsant

medications, did he have any better control of seizure activity, as compared

to their control since taking him off drugs, (both in terms of number of

seizures over any given time frame and the intensity of those seizures) with

the added noticeable benefit of no side affects. (Esp. more alert and aware

of his surroundings)

BENEFITS: *The intensive rehabilitation program we did for 14 months through

the Institutes for the Development of Human Potential (Glenn Doman program -

Australian contact, Max Britt P.O Box 3 Healesville, , 3777 - Ph 059

623084) - especially the " masking " - rebreathing expelled air for set time,

many times a day. (Check out www.iahp.org or www.nacd.org)

*D.M.G. - dimethyl glycine supplement - the active component of pan agamic

acid (vitamin B15)

*Taurine amino acid supplement

*Diet - particularly no salt, no sugar and regulated fluid intake

2. WAS: For the first 3-4 months of his life, was fed through a

naos-gastric tube. To avoid infections from food getting on his lungs, all

fluids had to be thickened, due to his poor swallowing. He was never able

to successfully breast feed, because he could not open his mouth properly.

He struggled with a constant " rattling " in the back of his throat, due to

the inability to deal with his secretions, which required sucking out with a

machine.

NOW: has been drinking unthickened fluids, for nearly 3 years (still

from a bottle, working on cup use), and eats lumpy mashed food, making some

attempt to bite or chew, with encouragement. The " rattle " /secretion problem

has completely dried up.

BENEFITS: *getting him off anti-convulsants

*D.M.G. (as above) - noticed dramatic improvement in 3-4 days when we first

put him on it.

3. WAS: Floppy " rag doll " lying " frog legged " on the floor, unable to lift

his head up (until 15 months) or roll, and often only wakeful 2 to 4 hours a

day.

NOW: Greatly improved muscle tone and weight bearing ability. (We still

notice fluctuations during a day and from day to day, although they are mild

compared to pre supplementation with D.M.G., and despite any fluctuations,

he is always steadily improving in overall strength, especially in the upper

body) He can roll from back to front and front to back (often gets arms

stuck), and when very active, used to move around the floor on his back (we

don't put him on the floor much now that he has a Hart , which he

regularly [2 x 1 or 2hr sessions per day] makes good use of, as energy

levels allow). He weight bears well on his legs, and is able to stand for

extended periods of time with limited support for balance. He will step out

and with encouragement and some assistance, walk across a room in his A.F.O'

s, on good days. He will involve and sometimes initiate meaningful

interaction and games with others. He can reach and hit things, but not

reach and grasp; although he will tightly grasp something placed in his hand

(esp. his spoon in his right hand). If placed on the floor in a seated

position, he is able to remain upright for several hours, using his hands on

the floor, between his legs, for limited support. He now independently

moves around the floor, in this way, pushing any pillows placed around him

for protection, out of the way. For this reason, we have brought him a

football foam protection helmet, to avoid injury. When seated, he often

plays a game of leaning right back and pulling himself upright at the last

minute, before he falls backwards. Sits on a little stool for extended

periods of time, often with out support.

BENEFITS: *D.M.G. supplement

*Co Enzyme Q10 and activated Vitamin B3 supplements - was on these before

discovering D.M.G. While not as effective, they did assist with his energy

levels.

*Diet - higher fat / lower carbohydrate / low acid forming (i.e. Alkaline

forming foods) / all raw vegan diet and freshly juiced vegetable juices for

fluids.

*The intensive rehabilitation program definitely laid a good foundation to

this progress.

WAS: Struggled with chronic constipation, with bleeding, often requiring

suppositories.

NOW: Has very few digestive problems.

BENEFITS: Change of diet.

# Aside from secondary illnesses, the removal of the D.M.G. supplementation

and a major set back after his 18 month immunization, (when he lost 3 to 4

clear words of speech, which he has never regained - the beginnings of word

forming and a greater vocal range has been a recent progression) has

always been steadily improving, especially since coming off

anti-convulsants.

AN OVERVIEW OF ADRIAN'S DIET & SUPPLEMENTS.

Diet: *Fruit - bananas, avocados, pears, apples, kiwi fruit, peaches,

mangoes, paw paws, strawberries, nectarines, apricots, plums, custard apple,

rock melon, water melon

* " Nut Butter " - the following soaked overnight in water in the fridge and

crushed: almonds, lima beans, dates, sunflower seeds, pumpkin seeds

(pepita), sultans, raisins, figs, dried apricots, and prunes.

*Tofu, tahini (crushed sesame seed paste)

(On the few occasions we have given him cooked animal based products - eg

egg custard - we have noticed a return of the " rattles " in the back of the

throat and a swelling up of the old sty scares on his eyelids. had

very bad sties on his eyes when younger, until we introduced this diet.)

Fluids: Mainly fresh, raw, vegetable juices, esp. carrot with small amounts

of celery, cucumber, beetroot, parsley, or spinach. (Occasionally, 100%

bottled fruit juice, watered down)

Supplements: *Barley green or alfalfa powder - heaped teaspoon per day

(broad range alkalising nutrient) (Check out http://hacres.com on

the Net)

*Selenium yeast powder - 1/3 teaspoon per day (broad range nutrient & anti

oxidant)

*Grain based acidophilus/bifidus concentrate powder - ½ teaspoon per day

*Calcium Ascorbate - 1/4 teaspoon per day (non acid vitamin C anti oxidant)

*Calcium supplement - equivalent to 300mg per day (assist bone density)

*Vitamin B12 - 250mcg per day (because of vegan diet)

*Linseed/flaxseed oil - approx 5 ml per day (essential fatty acids esp.

omega 3)

*Taurine amino acid - 500 to 750 mg per day (assists with epilepsy and aids

liver detox)

*D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. Of all

the supplements we have ever used with , this is the one that has

shown the most obvious, sustained, benefits. The first time we put him on

it, with in 3 to 4 days, we saw a marked improvement in his epilepsy, energy

levels, alertness, and a complete " drying up " of the rattling at the back of

the throat. We did a trial of taking him off it, and with in 10 days,

noticed a return or marked increase in all these things, even reverting back

to not opening his mouth to feed, as was the case in his early months of

life. We again trailed off the D.M.G. recently. He was off it for

over 2 months when we started to notice a return of the " rattles " in the

back of his throat, and an increased susceptibility to secondary illnesses.

We returned him to a 2ml per day maintenance dose, as of the 17th April, and

have noticed a marked improvement in these areas again. (Check out

www.kirkmanlabs.com on the Net)

The transcript of an extensive interview we conducted with a representee of

Queensland Advocacy Incorporated, concerning our experiences in dealing with

the medical system, and other disability services on the journey of caring

for , can be found at www.qai.org.au by clicking on " Learning on line "

and then " Genetic doctors " . Our prayer is that by sharing our story, others

on a similar journey will find encouragement, and that it would be a

catalysts to reforms with in the medical/disabilities services sector.

Trust you find this of interest. There is much more we could share,

concerning why we do what we are doing. Not sure about the " science " of it

all, however the positive results are a testimony to the fact that any

progression of the condition, is gradually being reversed. Though still a

profoundly disabled boy, has good quality of life, and really loves

his life. Though the journey for us has been an extremely difficult one,

is a joy to be around, and we thank God for the blessing he has been

to our lives.

[ ] Re: Our daughter, Lydia...

>

> >We can be thankful however, that nowadays people are depending less

> >and less on the Medical Profession and researching problems on their

> >own, which has resulted in people being Drug Free and Seizure Free.

>

> JOHN:

>

> I am interested in finding every single case of what you describe

> above.

>

> One of my goals, if these nutritional therapies work for Lydia, is to

> amass a library of these cases so that people can be armed with

> information when they are faced head-on with epilepsy. Even the

> staunchest of the staunch in the mainstream medical community can be

> forced through sheer numbers to reach a point of recognition, if not

> acceptance. And that is what I intend to do in my medical community

> when [...prayerfully...] the time comes.

>

> In other words, a single anecdote or two or three is one thing; but

> thousands, all neatly compiled in a searchable electronic form is

> something else entirely.

>

> Let me emphasize that I'm not interested in a one or two sentence

> statement. It has to be in a form that will easily be recognized by

> physicians as a CASE REPORT instead of an ANECDOTE. That is their

> distinction, not mine, but I can play the game using at least some of

> their rules. So anyone and everyone can compose and/or copy these

> detailed narrative case reports as they feel led, and email them to

> me.

>

> Tim

>

> _

>

July 29, 2001

Tim,

I would be interested to know more, concerning listed items 5 & 7 in your

post, namely metylcobalamin and quercetin. What are they?, What are they

particularly given for?, Sources of information about them?, etc.

Thanks in anticipation of your response.

Regards,

Savage.