Re: Digest Number 385

[Guest guest]

Hi,

Okay, why did my primary care doctor dx me with airway disease?? I was

tested four times for my intake of oxygen with very poor results. Told me I

had asthma like symptoms, but was not asthma. Put me on inhaler, pills, and

nasal spray. Why would she not connect this with FMS??

Shari Dodd

RE: RE: Hyperbaric Oxygen Therapy

>

>

>,

>

>> I've been listening in, after 20 HBO treatments I've felt no better or

>> worse. my understanding is HBO (hyperbaric oxygen) is used in addition

>> to other treatment and in and of itself may not be helpful.

>

>Were the treatments for CFIDS or something else? I've read that

>2 weeks of daily treatments is the bare minimum. I think it takes

>more than 3 weeks of treatment for angiogenesis to take place

>(building of new capillaries into tissue).

>

>> my understanding is HBO (hyperbaric oxygen) is used in addition

>> to other treatment and in and of itself may not be helpful.

>

>Yes, from what I've read I believe that's true. I haven't read of it

>being recommended as a monotherapy for anything.

>

>,

>

>> > But if the benefits come from better oxygen

>> > delivery, they are only going to be temporary --

>

>Not necessarily. The partial pressure of oxygen reaching tissue

>has been greatly increased for as many as 3 years after treatment.

>The treatments were long I think a month or more. Long term

>treatments promote angiogenesis. This building of new capillaries

>into tissue increases the amount of O2 reaching the tissue. Once

>the capillaries are made they stay there and don't disappear once

>HBO treatments have stopped, so tissues stay more oxygenated.

>

>> > we haven't fixed

>> > the problem that is causing low oxygen delivery to begin with.

>

>Some random thoughts - all wild speculation:

>If hypercoag was the problem, then it may still be a problem and

>perhaps the HBO therapy will be of minimal benefit. maybe the new

>vessels formed by angiogenesis may be free of plaque (for awhile

>at least). Also, perhaps the extra O2 might reverse the hypercoag

>condition (doesn't Dr. Berg say that the hypercoag condition is

>precipitated by an event such as viral infection?) Even so, it

>doesn't look like O2 can be a monotherapy - unless perhaps it

>can stop some feedback loop.

>

>> > This is the treatment that Cher claims worked for her.

>

>I hadn't heard that. Do you know any details?

>

>> > So if you stoped oxygen treatment and you still had the defective

>> > immune system, the mycoplasma might come back.

>

>Unless the extra O2 in the tissues (because of angiogenesis) keeps

>the oxygen levels too high for myco to multiply?

>

>Well we may have a few data points in a couple months as I and my

>friends experiment on ourselves!

>

>Patti

>--

>

>

>___________________________________________________________________________

____

>___________________________________________________________________________

____

>

[Guest guest]

...on calcium.....I use a nasal spray called Miacalcin.....are you able

to take that? Joanne

[Guest guest]

Crissy, No one has mentioned that if you are that constipated, it might

be a good idea to start with an enema or colonic (Colon Hydrotherapy) to

clean out the colon itself. Laxatves work on the entire digestive

system, an enema will wash out the impacted fecal material. You might

try and find a certified colon therapist for a series of colonics to get

to the root of the problem. Then once cleaned out, go to a maintenance

program of using an enema the moment you feel that you are starting to

get constipated.

[Guest guest]

Chrissy,, try a colon hydrotheripist (colonics). j i have one per month and

i dont see how they can not work.j they are not unpleasant. i dont know

where you are but e-mail me as il may know a therapist near you., fred

[Guest guest]

I have done several enemas. They did not work. I am getting worried, I am

going to find a good doctor who specializes in the colon.

Chrissy

Re: Digest Number 385

>Crissy, No one has mentioned that if you are that constipated, it might

>be a good idea to start with an enema or colonic (Colon Hydrotherapy) to

>clean out the colon itself. Laxatves work on the entire digestive

>system, an enema will wash out the impacted fecal material. You might

>try and find a certified colon therapist for a series of colonics to get

>to the root of the problem. Then once cleaned out, go to a maintenance

>program of using an enema the moment you feel that you are starting to

>get constipated.

>

>

>------------------------------------------------------------------------

>Failed tests, classes skipped, forgotten locker combinations.

>Remember the good 'ol days

>1/4053/1/_/478268/_/960213960/

>------------------------------------------------------------------------

>

>Subscription email: bowel cleanse-subscribeegroups

>

[Guest guest]

Chrissy,

Have you read Dr. Bernard Jensen's book, " Dr. Jensen's Guide to Better Bowel

Care " ? I highly recommend that you read this book and use his therapies,

since you have tried almost everything else.

Patty

Re: Digest Number 385

>

>

> >Crissy, No one has mentioned that if you are that constipated, it might

> >be a good idea to start with an enema or colonic (Colon Hydrotherapy) to

> >clean out the colon itself. Laxatves work on the entire digestive

> >system, an enema will wash out the impacted fecal material. You might

> >try and find a certified colon therapist for a series of colonics to get

> >to the root of the problem. Then once cleaned out, go to a maintenance

> >program of using an enema the moment you feel that you are starting to

> >get constipated.

> >

> >

> >------------------------------------------------------------------------

> >Failed tests, classes skipped, forgotten locker combinations.

> >Remember the good 'ol days

> >1/4053/1/_/478268/_/960213960/

> >------------------------------------------------------------------------

> >

> >Subscription email: bowel cleanse-subscribeegroups

> >

[Guest guest]

Thank you Patty, I have written the name of this book down and will look for

it.

Chrissy

Re: Digest Number 385

Chrissy,

Have you read Dr. Bernard Jensen's book, " Dr. Jensen's Guide to Better Bowel

Care " ? I highly recommend that you read this book and use his therapies,

since you have tried almost everything else.

Patty

Re: Digest Number 385

>

>

> >Crissy, No one has mentioned that if you are that constipated, it might

> >be a good idea to start with an enema or colonic (Colon Hydrotherapy) to

> >clean out the colon itself. Laxatves work on the entire digestive

> >system, an enema will wash out the impacted fecal material. You might

> >try and find a certified colon therapist for a series of colonics to get

> >to the root of the problem. Then once cleaned out, go to a maintenance

> >program of using an enema the moment you feel that you are starting to

> >get constipated.

> >

> >

> >------------------------------------------------------------------------

> >Failed tests, classes skipped, forgotten locker combinations.

> >Remember the good 'ol days

> >1/4053/1/_/478268/_/960213960/

> >------------------------------------------------------------------------

> >

> >Subscription email: bowel cleanse-subscribeegroups

> >

[Guest guest]

Colonics and enemas do not work for me WHAT SO EVER, unless I do a cleanse.

Which you will learn about in DR. Jensen Book. You must include herbal colon

cleaners, along with fasting or liquidified foods for easy digestion while

cleansing. Cleansing is a period of time set aside in which you stop your

food intake, while taking herbs that scrap out the colon, the colonics then

take the waste and flush it out of your body. It is life changing.

Re: Digest Number 385

>

>

> >Crissy, No one has mentioned that if you are that constipated, it might

> >be a good idea to start with an enema or colonic (Colon Hydrotherapy) to

> >clean out the colon itself. Laxatves work on the entire digestive

> >system, an enema will wash out the impacted fecal material. You might

> >try and find a certified colon therapist for a series of colonics to get

> >to the root of the problem. Then once cleaned out, go to a maintenance

> >program of using an enema the moment you feel that you are starting to

> >get constipated.

> >

> >

> >------------------------------------------------------------------------

> >Failed tests, classes skipped, forgotten locker combinations.

> >Remember the good 'ol days

> >1/4053/1/_/478268/_/960213960/

> >------------------------------------------------------------------------

> >

> >Subscription email: bowel cleanse-subscribeegroups

> >

[Guest guest]

Thanks Laurie and Ron!! Ron, I would appreciate any further information you

can provide about Transfer Factor.

Thanks!

[Guest guest]

Carolyn, your poem was terrific. I should print it out and frame it for my

fridge (you know, that white thing with the old moldy stuff in the back and

the fingerprints all over the front).

Also, some good news (potentially) -- Eli has been on the waiting list for an

appropriate spot with Pegasus Therapeutic Riding, horseback riding for kids

with special needs. And finally, after being on the waiting list, after

having a positive atlanto-axial x-ray, a spot may be opening up. We are

going to a stable on Friday to have him evaluated by their physical

therapist. Depending on his trunk stability he may need to ride with a

physical therapist, he may be okay just riding with an instructor who has

some PT training. We're just happy to get the ball rolling. He'll just love

it (so will I). So fingers crossed.

Hope you are all enjoying the summer.

love debbi mom to Logan (6 today!) Eli (DS) and Milo (4 in sept)

[Guest guest]

At 08:43 PM 8/29/00 +0000, you wrote:

>just took a quick trip to the health food store to pick up a few

>things. on my list was lavender EO for immediate relief of a bad

>headache. i took a look at the EOs in the store, and one brand had two

>different kinds of lavender - regular, and bulgarian. they're both listed

>as lavendula officianalis - can anyone tell me of the particular benefits

>of this kind - or if there are any at all, or if this is a marketing ploy?

Lavender officianalis is the exact same species as lavender

augustifolia ... both are " lavender vera " ...ie, true lavender.

now, the " same " plant, grown in different countries, will be vastly

different...and the essential oil from the " same " plant grown in different

countries will also differ wildly. I have experienced Lavender from the

USA, from Tasmania, from India, two types from great britain, half a dozen

french lavenders, and two bulgarian... all are different.

it's not hype...there are differences between them. the only way to know

which will be YOUR favorite, is to sample it.

different lavender oils (and we are talking true lavender here, not

lavandin or spike lavender) will have different qualities, and different

therapeutic benefits.

we currently carry four different true lavender oils...from France,

bulgaria, high altitude french, and Himalayan. anyone who has sampled

them knows there's a wide range of difference among them.

Your source for superb Essential Oils, Aromatherapy

Accessories, Information, Books and more!

Visit us at: <http://www.naturesgift.com>

[Guest guest]

Good morning again all~I wanted to ask if anyone has read the book~'The

Complete Book of Essential Oils & Aromatherapy'by Ann Worwood & if

anyone has tried the receipes & how well you thought of them.

Thanks,

~V~

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Marge wrote:

>

> At 08:43 PM 8/29/00 +0000, you wrote:

>

> >just took a quick trip to the health food store to pick up a few

> >things. on my list was lavender EO for immediate relief of a bad

> >headache. i took a look at the EOs in the store, and one brand had two

> >different kinds of lavender - regular, and bulgarian. they're both listed

> >as lavendula officianalis - can anyone tell me of the particular benefits

> >of this kind - or if there are any at all, or if this is a marketing ploy?

>

> Lavender officianalis is the exact same species as lavender

> augustifolia ... both are " lavender vera " ...ie, true lavender.

>

> now, the " same " plant, grown in different countries, will be vastly

> different...and the essential oil from the " same " plant grown in different

> countries will also differ wildly.

Hi Marge,

Why is that? Is it because of the difference in soils, mineral

compositions of the land and things growing nearby, the way different

wines pick up the tastes of other things growing near them?

> I have experienced Lavender from the

> USA, from Tasmania, from India, two types from great britain, half a dozen

> french lavenders, and two bulgarian... all are different.

>

> it's not hype...there are differences between them. the only way to know

> which will be YOUR favorite, is to sample it.

>

> different lavender oils (and we are talking true lavender here, not

> lavandin or spike lavender) will have different qualities, and different

> therapeutic benefits.

>

> we currently carry four different true lavender oils...from France,

> bulgaria, high altitude french, and Himalayan. anyone who has sampled

> them knows there's a wide range of difference among them.

>

> Your source for superb Essential Oils, Aromatherapy

> Accessories, Information, Books and more!

> Visit us at: <http://www.naturesgift.com>

Liz,

'I Love Lucy' in hell, on acid

http://www.geocities.com/wellesley/7368

[Guest guest]

,

Please tell me more about applying ice to the back of your daughters neck to stop the seizures. My name is Cherri and have a nine year old with epilepsy and she is also autistic. My address is luvharmony8@...

Thank You

[Guest guest]

Hi Cherri,

Maya has complex partial seizures and we have been through eight drugs

that have not stopped the seizures but decreased them.

We always felt that we if we could just distract her we might stop them.

Nothing seemed to work, until we tried cold water and she seemed to come

out of them faster. This seemed to work for awhile although Dr's seemed

to scoff when we would tell them it worked.

With stronger seizures the water didn't work as well so we switched to

ice. The one thing Maya hates is ice and I think that hate is stronger

than the seizure. This has been over a year and the breakthrough with

just saying we are going to put ice on your neck, has come in the last

two to three months.

Cherri, what kind of seizures does your daughter have?

>,

>

>Please tell me more about applying ice to the back of your daughters neck to

>stop the seizures. My name is Cherri and have a nine year old with epilepsy

>and she is also autistic. My address is luvharmony8@...

>

>Thank You

[Guest guest]

Our son had a real battle with seizures when he was younger ( as per

the attached overview - he has complex IV mitochondrial myopathy for you

interest!).

Can I strongly encourage you to check out www.iahp.org or www.nacd.org for

more information on seizure control with out drugs. It radically changed

our thinking on the issue and gave our son quality of life that would not

have otherwise been possible.

Regards,

& Savage.

AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (MAY 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)

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: [ ] Digest Number 385

> Hi Cherri,

>

> Maya has complex partial seizures and we have been through eight drugs

> that have not stopped the seizures but decreased them.

>

> We always felt that we if we could just distract her we might stop them.

> Nothing seemed to work, until we tried cold water and she seemed to come

> out of them faster. This seemed to work for awhile although Dr's seemed

> to scoff when we would tell them it worked.

>

> With stronger seizures the water didn't work as well so we switched to

> ice. The one thing Maya hates is ice and I think that hate is stronger

> than the seizure. This has been over a year and the breakthrough with

> just saying we are going to put ice on your neck, has come in the last

> two to three months.

>

> Cherri, what kind of seizures does your daughter have?

>

>

> >,

> >

> >Please tell me more about applying ice to the back of your daughters neck

to

> >stop the seizures. My name is Cherri and have a nine year old with

epilepsy

> >and she is also autistic. My address is luvharmony8@...

> >

> >Thank You

>

> _

>

>

[Guest guest]

At the moment I have started treating myself without drugs! This is because

I have found out that I am pregnant! I am now treating myself as a diabetic

where meals are concerned and sticking to a regular meal routine and eating

three balanced meals per day plus if I need a snack before bed I will just

have a piece of lightly buttered toast and an apple or some other fresh

fruit! It has helped me a lot surprisingly enough! I just felt like

sharing this with you! What seems to be working for me may not work for

your son! But it is worth the thought

Lynn-Marie

Re: [ ] Digest Number 385

>

>

> > Hi Cherri,

> >

> > Maya has complex partial seizures and we have been through eight drugs

> > that have not stopped the seizures but decreased them.

> >

> > We always felt that we if we could just distract her we might stop them.

> > Nothing seemed to work, until we tried cold water and she seemed to come

> > out of them faster. This seemed to work for awhile although Dr's seemed

> > to scoff when we would tell them it worked.

> >

> > With stronger seizures the water didn't work as well so we switched to

> > ice. The one thing Maya hates is ice and I think that hate is stronger

> > than the seizure. This has been over a year and the breakthrough with

> > just saying we are going to put ice on your neck, has come in the last

> > two to three months.

> >

> > Cherri, what kind of seizures does your daughter have?

> >

> >

> > >,

> > >

> > >Please tell me more about applying ice to the back of your daughters

neck

> to

> > >stop the seizures. My name is Cherri and have a nine year old with

> epilepsy

> > >and she is also autistic. My address is luvharmony8@...

> > >

> > >Thank You

> >

> > _

> >

> >

[Guest guest]

Dear and ,

Thank you for your great post!!! We are like sponges on this list. We are

already acting on good advice that has been put forth. Zoe has given us a lot

of good direction and we have started neurofeedback. I don't expect miracles

but persistence and constantly pursuing the things that will abate Maya's

seizures is what we are going to do. With Maya's autistic tendencies we have

other issues that complicate things. We are slowly taking her of drugs, and her

seizure activity is about the same if not better, we went from 1200mg of

Trileptil a day to 450 mg. Next is Dr. Reiter...

Thanks again,

& Jasmina

>Our son had a real battle with seizures when he was younger ( as per

>the attached overview - he has complex IV mitochondrial myopathy for you

>interest!).

>

>Can I strongly encourage you to check out www.iahp.org or www.nacd.org for

>more information on seizure control with out drugs. It radically changed

>our thinking on the issue and gave our son quality of life that would not

>have otherwise been possible.

>

>Regards,

>

> & Savage.

>

>

>AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (MAY 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)

>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: [ ] Digest Number 385

>

>

>> Hi Cherri,

>>

>> Maya has complex partial seizures and we have been through eight drugs

>> that have not stopped the seizures but decreased them.

>>

>> We always felt that we if we could just distract her we might stop them.

>> Nothing seemed to work, until we tried cold water and she seemed to come

>> out of them faster. This seemed to work for awhile although Dr's seemed

>> to scoff when we would tell them it worked.

>>

>> With stronger seizures the water didn't work as well so we switched to

>> ice. The one thing Maya hates is ice and I think that hate is stronger

>> than the seizure. This has been over a year and the breakthrough with

>> just saying we are going to put ice on your neck, has come in the last

>> two to three months.

>>

>> Cherri, what kind of seizures does your daughter have?

>>

>>

>> >,

>> >

>> >Please tell me more about applying ice to the back of your daughters neck

>to

>> >stop the seizures. My name is Cherri and have a nine year old with

>epilepsy

>> >and she is also autistic. My address is luvharmony8@...

>> >

>> >Thank You

>>

>> _

>>

>>

[Guest guest]

Hello mdorzech and everyone,

Tea info:

Many premium green teas can be brewed up to three times. I have never had a

bag tea which could in any way come close to the fresh sweet flavor of bulk

tea. Bag tea is the worst grade collected from the pulverized droppings that

occur during the drying process. It is usually old and stale.

Green tea should always be brewed with water at 70-80 degrees centigrade

(158 f -176 f) for just a few minutes. Japanese tea is much more fragile

than Chinese and steeping is often one minute or less. The tea should be

slightly sweet- if bitter it has been steeped too long, or in water that was

too hot. Make sure to drain off all the water when serving (leave it in the

strainer to 'dry') as otherwise it continues brewing. Each subsequent

brewing time is less and usually with slightly cooler water.

A good outlet for bulk green tea of all price ranges is www.upton.com. or

stash.com They both ship and have a great variety of delicious teas.

Best wishes,

mm

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Queenie --

Congrats! Let us know how the first day goes.

Sue --

WOOHOO! Proud of you! 103 yesterday? I am so sorry. It's a little cooler

here, but Thursday was the last day of that. Calling for rain and high temps

this weekend. Bummer.

Have a fab Friday ladies!

Sherrie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm on my way!

<A

HREF= " http://www.fitday.com/WebFit/PublicJournals.html?Owner=sher%5Ft " >http://ww\

w.fitday.com/WebFit/PublicJournals.html?Owner=sher%5Ft</A>

[Guest guest]

Man, the weather's really wacked lately! My mom was saying there were

100+ degree temps all up and down the eastern seaboard. I'm in Texas,

and it's been relatively comfortable here (Meaning it's only been in

the mid 90s compared to the 105+ we've gotten the last two summers. One

summer, we'd had 30+ days of 100+ degree weather by mid-MAY).

K.

> Queenie --

> Congrats! Let us know how the first day goes.

>

> Sue --

> WOOHOO! Proud of you! 103 yesterday? I am so sorry. It's a little cooler

> here, but Thursday was the last day of that. Calling for rain and high temps

> this weekend. Bummer.

>

> Have a fab Friday ladies!

> Sherrie

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> I'm on my way!

> <A

HREF= " http://www.fitday.com/WebFit/PublicJournals.html?Owner=sher%5Ft " >http://ww\

w.fitday.com/WebFit/PublicJournals.html?Owner=sher%5Ft</A>

>

>

>

>

>

>

>

>

[Guest guest]

Is it too late to try to get into Splash and Bash? I had a previous

commitment that weekend but my husband talked me out of it and he wants us to

go to Seattle.

Cheri

[Guest guest]

kindly wrote:

>

> Date: Sat, 26 Mar 2005 13:49:05 -0000

> From: " " <cox58asthma@...>

> Subject: Re: Pain in Arms, Numbness in Hands

>

> Thanks for that note, it is important to people who may be

> considering Xolair.

>

> I have found that I now have more aches, joint pain, stiffness. It

> IS NOT FROM THE XOLAIR. I have been in a slow taper off prednisone

> since I started Xolair and am now completely off. The Dr says the

> joint aches, etc are because the pred controlled inflamation

> everywhere and now it is not, therefore I ache. Makes sense.

Hello, 'n' everyone. Thanks for your contribution to this little

thread. Your posting makes an important point about how to figure out

cause and effect: Remember that the cause of an effect may be the

*absence* of something else. But it's hard to notice things that are not

there.

You gave an excellent example, one that Kathy and I have also observed in

her medical history: After a course of prednisone, when she stops the

drug, a problem sometimes pops up. Why? Perhaps because it was there all

along but masked by the prednisone.

Here's another example, which I learned from the medical literature: After

surgery requiring anesthesia, some patients suffer a headache. Is the

headache caused by the anesthesia? No. It's caused by the absence of the

coffee from their diet on the morning of the surgergy - that is, the

patients were instructed to skip breakfast, so they didn't get their usual

dose of caffeine.

Best wishes, everyone.

Gordon

My original message:

> >

> > Dear Xolair people:

> >

> > A few months ago, on behalf of my asthmatic friend Kathy, I

> reported that

> > she had developed pain in her arms and numbness in her hands soon

> after

> > her first injection of Xolair. I asked whether anyone else had

> experienced

> > such pain and numbness, and one person kindly replied (offlist).

> >

> > Let me now offer an update: The pain and numbness were due to

> carpal

> > tunnel syndrome, and it was apparently just a coincidence that they

> > started after that first shot. A neurologist diagnosed the carpal

> tunnel

> > problem on the basis of Kathy's verbal description and then in a

> series of

> > nerve-conduction tests definitively demonstrated it.

> >

> > Because the postings to this helpful group are archived and

> searchable, I

> > thought it important to provide this update.

> >

> > Best wishes to everyone.

> >

> > Gordon

> > Ramsey, New Jersey