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Hello,

Just to add to that, I encouraged a fellow former classmate from

another club that has HCV to get into a treatment program.

Afer treatment he has now been clear for over a year.

However, a cousin of mine that has HCV was clear for five years and

was recently feeling tired all the time. She thought it was just

aging and work related. I encouraged her to get tested again for

HCV. She found that the HCV has come back in full force.

Hearing good new is great, but those with HCV should always be

watchful of their health. The doctors that I am consulting with have

all told me that HCV is not just a bloodborn liver disease. It is a

systemic disease that is known to attack the kidneys, nervous system,

thyroid, and other organs.

It is certain that at some point a cure will be found. In the

meantime I plan to continue using every reasonable treatment made

available. It would certainly be great if the government could put

as much effort into HCV research as there is in HIV research.

Again, if anyone has any information about peg being used as

maintenance not just treatment from studies or insurance that will

cover peg maintenance please let me know.

Thanks,

Ken

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Dear Ken,

I have searched at http://www.hepatitisneighborhood.com and came up

with a link to a doctor who is supposed to answer all of his email.

Here it is: http://www.hepatitisdoctor.com

It looks to me as though the interferon maintenance is available

only to those who have previously treated unsuccessfully with the

standard regimens, but why not ask the doctor if he has information

for you?

Also, go ahead and join the hepatitsneighborhood. It is a very

informative site and can shed some light on getting financial

assistance for treatment medications. Also, check all the clinical

trial links...you can sign up for email alerts to trials that fit

your personal profile.

Happy browsing!

Suzy

>

> Hello,

>

> Just to add to that, I encouraged a fellow former classmate from

> another club that has HCV to get into a treatment program.

> Afer treatment he has now been clear for over a year.

>

> However, a cousin of mine that has HCV was clear for five years

and

> was recently feeling tired all the time. She thought it was just

> aging and work related. I encouraged her to get tested again for

> HCV. She found that the HCV has come back in full force.

>

> Hearing good new is great, but those with HCV should always be

> watchful of their health. The doctors that I am consulting with

have

> all told me that HCV is not just a bloodborn liver disease. It is

a

> systemic disease that is known to attack the kidneys, nervous

system,

> thyroid, and other organs.

>

> It is certain that at some point a cure will be found. In the

> meantime I plan to continue using every reasonable treatment made

> available. It would certainly be great if the government could

put

> as much effort into HCV research as there is in HIV research.

>

> Again, if anyone has any information about peg being used as

> maintenance not just treatment from studies or insurance that will

> cover peg maintenance please let me know.

>

> Thanks,

>

> Ken

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Well, thanks for the update!

It's always good to hear from sustained responders. I'll be getting

my one-year post tx check up in April or May and look forward to

great results as well.

Don't forget the newcomers...there are several here!

Hugs, Suzy

>

> Hey everybody. I'm a baaaaad boy. I haven't been over here in

quite

> a while. Pam you got to slow down girl. You're typing fingers must

> be tired. LOL. Anyway I just wanted to mmake a guest appearance.

Hi

> LeighAnne. For those of you who don't know me I had HCV for 12

> years. I was pronounced undetectable in Oct. 2002. I am as of my

> last qualitative in Dec. still undetectable. 2 YEARS! YA! The

> ultrasounds are showing marked improvement in my liver. So don't

> dispair kids, there is hope. Listen to those doctors and take your

> meds. Now if I can just trade this back in for a new one I'll be a

> happy camper! GTG SEE YA!!!!!!!!!!!!!!!

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  • 2 months later...
Guest guest

Hi Alia..great to hear from and even better to hear things are on the upside.

I hope the lil one hangs in there a few more weeks for ya. Matt was born at

33 weeks but tried coming from 27 weeks on...finally my water broke and he was

waiting no longer. He was born small and weighed only 4'13 when he came home

but on his 14th birthday 2 weeks ago he checked in at 6'0 and 170 lbs...Miss

Caroline you keep up the good work....hugs and luv to you both and I cant wait

for my order!!!!

Donna

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Don't worry about us and THANK YOU so much for the update!

Hope you 2 are headed in the right direction and will be back to normal soon!

We'll be praying for you both and for the baby to stay put!

Ashlee (Madison 2 ½, Poly)

Hello Again

Hi Everyone....

I know I have been MIA for a very long time and I wanted to check in with

all of you....

First off - Thanks to everyone that has been praying for me and for

Caroline. We soo appreciate it!! We are both actually doing pretty ok right

now. I thought I was having contractions again last night so off to the ER

we went. Turned out to be paranoia so I am just taking it easy for now... I

am now 33 weeks along and I am praying, hoping, that I can make it to 36

weeks. 3 more weeks would just be the biggest blessing in the world! I'm

still very small, I am measuring over two weeks behind, so the longer he can

stay put the better.

Little Caroline is hanging in there. The Enbrel has finally kicked in and

she is doing so much better. The last two nights have been fever filled, but

we are crossing our fingers that it will subside soon. We are on constant

ready stance to make that trip to the ER. Her fevers have only been around

101-102 so we have been holding off taking her in. I dread thinking that

Enbrel won't work. We have cleared the path with our insurance company to

start IVIG treatments, if needed. Luckily, we have a maximum out of pocket

of $750 and we've already met half off that. So, in all likeliness we would

be paying very little or nothing for treatments. We also ironically found

out we are $100 away from meeting out maximum prescription out of pocket of

$600 for Caroline. Kind of sad...

We had a CT scan done this week and the results came back abnormal. Her

rheumy indicated to us that means there is some sort of sinus problem, but

that the ENT would be able to read the charts better. We see the ENT on the

6th so hopefully we will get some answers. Her rheumy told us to be prepared

for surgery, but I guess we'll wait and see... We see Dr. Akin on Monday and

hopefully we will get some clarification on where we will be going from

here.

Bracelets/Magnets - I mailed the final orders today. I sent them all

overnight and all except two were guaranteed to arrive by tomorrow. We did

actually run out of bracelets! Can you believe it. Luckily I thought ahead

and placed another order. They are shipping today and will be at my home on

Saturday. I tried to send everyone the majority of their orders. For those

who were shorted I will mail those out Sunday or Monday. I apologize for not

getting these in time for many of your walks, but I do appreciate everyone's

patience. If you want/need a refund please let me know. I will be waay more

than willing to provide you one.

Helen and - thanks for checking in on me. I am not sure why you get a

busy signal. We have a new number. I will send it to you offline...

We are all geared up for the walk on Saturday. We can't wait. I am extremely

nervous to speak in front of everyone, but somehow we'll get through it...

Thanks again everyone. I promise to catch up on some posts sometime soon,

but in the meantime I am thinking of everyone...

Alia and Caroline, age 3, poly and Uveitis

________________________________

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Guest guest

-YEAH!!! phew...I was calling the old house number...Glad you guys

are hanging in there. Dont worry about being paraniod and going to

the ER, i dont think you can ever be tooo careful when it comes to

this little guy.....

Talk to you soon

hugs Helen and Nick 7 systemic

-- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> Hi Everyone....

>

> I know I have been MIA for a very long time and I wanted to check

in with

> all of you....

>

> First off - Thanks to everyone that has been praying for me and for

> Caroline. We soo appreciate it!! We are both actually doing pretty

ok right

> now. I thought I was having contractions again last night so off

to the ER

> we went. Turned out to be paranoia so I am just taking it easy for

now... I

> am now 33 weeks along and I am praying, hoping, that I can make it

to 36

> weeks. 3 more weeks would just be the biggest blessing in the

world! I'm

> still very small, I am measuring over two weeks behind, so the

longer he can

> stay put the better.

>

> Little Caroline is hanging in there. The Enbrel has finally kicked

in and

> she is doing so much better. The last two nights have been fever

filled, but

> we are crossing our fingers that it will subside soon. We are on

constant

> ready stance to make that trip to the ER. Her fevers have only

been around

> 101-102 so we have been holding off taking her in. I dread

thinking that

> Enbrel won't work. We have cleared the path with our insurance

company to

> start IVIG treatments, if needed. Luckily, we have a maximum out

of pocket

> of $750 and we've already met half off that. So, in all likeliness

we would

> be paying very little or nothing for treatments. We also

ironically found

> out we are $100 away from meeting out maximum prescription out of

pocket of

> $600 for Caroline. Kind of sad...

>

> We had a CT scan done this week and the results came back

abnormal. Her

> rheumy indicated to us that means there is some sort of sinus

problem, but

> that the ENT would be able to read the charts better. We see the

ENT on the

> 6th so hopefully we will get some answers. Her rheumy told us to

be prepared

> for surgery, but I guess we'll wait and see... We see Dr. Akin on

Monday and

> hopefully we will get some clarification on where we will be going

from

> here.

>

> Bracelets/Magnets - I mailed the final orders today. I sent them

all

> overnight and all except two were guaranteed to arrive by

tomorrow. We did

> actually run out of bracelets! Can you believe it. Luckily I

thought ahead

> and placed another order. They are shipping today and will be at

my home on

> Saturday. I tried to send everyone the majority of their orders.

For those

> who were shorted I will mail those out Sunday or Monday. I

apologize for not

> getting these in time for many of your walks, but I do appreciate

everyone's

> patience. If you want/need a refund please let me know. I will be

waay more

> than willing to provide you one.

>

> Helen and - thanks for checking in on me. I am not sure why

you get a

> busy signal. We have a new number. I will send it to you offline...

>

> We are all geared up for the walk on Saturday. We can't wait. I am

extremely

> nervous to speak in front of everyone, but somehow we'll get

through it...

>

> Thanks again everyone. I promise to catch up on some posts

sometime soon,

> but in the meantime I am thinking of everyone...

>

> Alia and Caroline, age 3, poly and Uveitis

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Guest guest

Hi Alia!!!!!

So good to hear from you in person. It's just that if we don't hear

from you, we WORRY about you and Caroline with all that's going on

with the 2 of you. We will continue to pray for at least 3 more weeks

in the oven for the little man. I hope and pray that the enbrel kicks

in again soon and provides the results you need. Caroline has had one

tough winter and I hope she stays strong to enjoy the rest of spring

and summer and gains control so you don't have a repeat next winter.

Have a blast at your walk tomorrow and post lots of pictures of your

little star!!

Stacia and Hunter 9 systemic, iritis

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  • 7 months later...

Good to hear the encouragement. I am right now struggling with Prednisone, for

a sinus infection of all idiotic things, and am having breathing problems, and

diarrhea and just feeling very weird. How do all of you survive on prednisone

for long term use? Does one get used to it?

[ ] Hello again

Hi , and everyone

I was not able to post for the past while, my husband is ill and is

still off work. So between trips to the hospital, working and trying to

get ready for Christmas I have been offline for about a month or so. I

spent a good hour this morning reading the back posts and was saddened

by some of them. I have always felt that everyone was very caring and

showed genuine concern for our fellow suffers - we all know that this

disease has its own agenda and we just have to follow the course where

it leads us. I understand that like everything there will be good and

bad, I hope that the New Year brings a new start. To all our new

members I'm glad you found us, its a HUGE relief to be able to chat

with people who understand this mess we are in. I am now down to

quarterly blood work, still on 100 mg Imuran, tests were normal in

December...YESSSS even after all the stress lately! Semi annual visits

with the Gastro doc and annual visits with the Hep doc... 1 1/2 years

after diagnosis.. life is good.

Hope you spend time with those you love and best wishes for the New Year

Hugs

Marie (Ont)

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Marie I am so glad you are doing better. It is so nice when we get good news.

I hope the holidays were good for you and your family. You sound alot happier

and less stressed now and I am glad.

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  • 2 months later...
Guest guest

,

I would recommend Nordic Naturals Omega Complete (3-6-9) Fatty Acids or even

their Cod Liver oil and you can supplement with Borage Oil (Omega 6). This

does work well or attention issues! I would also recommend supplements just

as if you would be treating you 4 yo with autism. Many believe the ADD is

also on the spectrum. As a teacher, the rise in ADD over the last 15 years

that I have been in and out of the classrooms has dramatically increased!

B6 (P5P) and magnesium help too. Have you read on the ARI's website

regarding B6/magnesium therapy? This was the second plan of attack that we

began when my son was 4. This year, for anxiety, we added 5-HTP (a natural

'prozac') and this has help him overall since it is a precursor to

serotonin. Keep reading and learning. But when starting any protocol,

begin one thing at a time to see how she adjusts to it. If you add too much

too fast and have problems, you don't know what the culprit is.

Jackie---

>I posted earlier about my 4 year old daughter with Autism. I would

> like to get some advice about my 12 1/2 year old daughter. She is

> severely learning disabled and the doctors say she has ADD. I do not

> want to medicate and am not a firm believer in ADD as a diagnosis. I

> believe there is some underlying problem. She is in all special ed

> classes at school. She is out of control, impulsive, and her grades

> are terrible. She says she is overwhelmed and gets stressed all the

> time. I do have five children so I know that can be chaotic. I just

> realized maybe I shoud try some of the things I do for my 4 yr old.

> The problem is any diet change would be very hard to explain to her

> and I have a hard time controlling what she eats or does in middle

> school.I thought maybe somebody would have some recommendations.

>

> Thank you

>

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Guest guest

Here are the notes from Diane Craft's audio tapes. She has a wonderful

protocol below. 8 weeks of adding things. Maintain for 3 months and

then begin removing them 1 at a time. The 5HTPT is on week 9 for her

plan.

I started her protocol 2 weeks ago for both of my boys and ordered all

the products from her web site and emailed her with a couple questions.

She responded within 12 hours to all of my questions. Very impressive.

Diane Craft

Biology of Behavior

Exploring the Physical Causes of

Behavior and Attention Problems in Children

Dianecraft.org

This is Diane Craft's tape series. She gives the latest brain and

nutritional research plus a proven step-by-step program of natural

supplements designed to help your child's body heal, and have ample

supply of the important calming neurotransmitters available. You will

learn of " natural medicines " you can discuss with your doctor, that are

free of side effects that accompany many prescription medications.

Notes from her lecture on tape.

* 80% of these kids had -mult infections/antibiotic use

* 99% have allergies

* If it's mental, it's physical.

* Dr. Crook-Help for Your Hyperactive Child--hyperactive

child book-replacing bacteria in stomach

* Dr. Leo Gallend-pediatrician-Super Immunity for Kids (need this

book to do the 8 week protocol for dosages)

* Neurotransmitters are made in the gut so that can affect

behavior

* Keep colonies of yeast down to a good amount

* 300% increase of Ritalin over last 3 years

I. Biological or Psychological

* Jay Lombard-The Brain Wellness Plan

* Serotonin-recirculated by antidepressants (Ritalin, prozac,

etc.)

* Body can make serotonin

* Fat in milk-good

* 50% didn't crawl

* over 80%--mult. Infections

* 99-100%--allergies-uncontrolled reactions to common good

things; immune system has gone array

* emphasis-building immune system rather than pulling away foods

* repeated antibiotic use causes and irritated neurological

system

II. Common characteristics of kids with upset body

chemistry

* Trauma reduces serotonin in body

* Fat is just as satisfying as sugar-so try to find some

substitutes that are satisfying-nuts, seeds, tuna, mayonnaise, beef

jerky-try to keep a balance

* Brain is a mirror of the gut

* Will see subtle changes within 1st week-look for subtle changes

* It takes about 3 mos. to change a child's body chemistry

* Will be adding other things-i.e. antifungal preparations, oils

* Take it yourself and add something different/new the next week

and continue with the previous

* Acidophilus sweetens the stomach & makes it feel very good

* Don't try to cut back on sugar until after the 2nd week b/c

they'll fight you on it b/c it's a craving

4/18/05

Changes in.

* Inappropriate behavior

* Loudness

* getting in people's faces

* disperceptions-overreaction to regular things

* mood swings

* attention problems, memory

* can be used with medications-in fact helps with absorption rate

* anemia, diabetic, lead

* kids will act how they feel

Biological Characteristics

* Sleep problems

* Stomach aches; indigestion

* Bloating; gas

* Canker sores-same lining in stomach as in the mouth

* Eczema; rashes; dry, itchy skin

* Thrush, athlete's foot, canker sores, vaginal infections,

warts-all outward symptoms of yeast overgrowth in stomach

* Allergies (esp. to molds-penicillin, amoxicillin, etc.), food

allergies, environmental allergies

* Leg pains

* Constipation; enuresis (bedwetting)

* Sugar cravings-real cravings where they take sugar and hide it

to eat it

* Trying to heal mucosal lining of stomach

Behavioral Characteristics

* Angry, Aggressive

* Irritable " touchy "

* Inappropriate Behavior

* Mood Swings

* Temper Tantrums

* Attentions Problems

* Depression

* Hyperactivity

* Restless, Nervous

III. Nutritional Intervention

How to.

* Outlined in Leo Galland's Superimmunity for Kids

* Go week by week and keep a journal

* Go at it slowly

Discuss this plan with your Doctor 1st

You add onto the existing plan each week, so by week 8, the child is on

all of the supplements. Stay on all of it for 3 months and then remove

each item, one at a time as they were added.

Week 1: Acidophilus-Refrigerated Kind

* Breakfast, Lunch and Dinner

* Primadophilus Junior by Nature's Way. Parent's report this is

the best

* Watch for Herxheimer effect-as yeast is dying off, it will put

off toxins and have a " flu " like effect-if this happens, cut back on

amount

This is the good bacteria that needs to be in the child's gut in order

to be healthy. It is wiped out by antibiotics and steroids. Only buy a

refrigerated brand. It can be put in cold drinks.

Week 2: Grapefruit Seed Extract, (NOT Grape Seed) Anti-fungal agent

* Breakfast, Lunch, Dinner

* DianeCraft.org has this for sale

* Oil or capsules

* Oil-2-3 drops 3x/day (follow directions on package)

* Put in Welch's Grape Juice-strong enough to mask taste

* Could use Caprylic acid instead of grapefruit seed

extract-another antifungal agent-2-3x/day-

If you child has symptoms of yeast, it would be worthwhile to give this.

It is taken 3x a day, with the Acidophilus.

Week 3: Reduce sugar & carbohydrates

* Increase protein especially at breakfast and snacks

* Breakfast-eggs, protein shakes, smoothies with protein powder,

butter, meats,

* Excess sugar causes irritability

Week 4: Mineral Rich (has more Magnesium and Calcium, Cherry flavor)

1Tsp a day until loose stool.

* Check SuperImmunity for Kids for dosage. Book for sale on

Amazon

* Magnesium-in citrate form or asporatate form

* Magnesium is " Nature's Tranquilizer "

* If not taking lots of calcium, get a magnesium with

calcium-unless they're battling constipation-then no calcium

* Takes about a year to build up magnesium

* Too much magnesium can cause diarrhea

* Can go in a smoothie; doesn't have a taste

* Check fingernails for white spots before starting-is a sign of

zinc deficiency

* Zinc runs 200 enzyme systems in body

* Hair, blood, saliva-test everything

* Check health food store for zinc

* Can add zinc, calcium, and magnesium in one week

* When no more white spots, you can stop the zinc

* Mental & Elemental Nutrients by Phifer talks about zinc

Week 5: 100 mg. of B Complex Vitamin, YEAST FREE.

* " Calming vitamins "

* Alan Gavy-B6: The Natural Healer-found that B6 is in serotonin

loop in brain (compared with taking Ritalin)

Week 6: EFA 500mg of DHA (Fish Oil); 1300 mg Evening Prim Rose; 1-200

Vitamin E

Choose from.

1. Efalex Focus by Nature's Way-combines Dr. Stordy's whole recipe

into one capsule-take 8 capsules/day for kids over 6

2. Or Coromega (pudding) Fish Oil, Vit E, and Borage Oil for

younger children

3. Or do Dr. Stordy's recipe

o 500 mg DHA (fish oil) daily

o 1000 mg of evening primrose oil-Efamol brand from England or can

interchange it with borage oil

o 200 i.u. vitamin E

* change chemistry of body-powerful stuff

* society that is deficient in serotonin

* essential fatty acids change to serotonin-come from fish, flax

seed, and butter, nuts & seeds, whole grains

* Beyond Prozac- Nordin-uses essential fatty acids to

build serotonin

* Signs of lack of essential fatty acids: Dry hair, cow lick,

dry skin, bumps on back of arms, chapped lips

* Need to change gut flora first to build good bacteria

* Boys have 3x higher need for essential fatty acids than girls

* Corpus collosum, vestibular system, myelin sheath-all made of

fat

* Brain is made 60% of fat-30% is DHA-made only from fish oil and

mother's milk

* Kids will crave fat

* Left hemisphere-judgment, right brain-emotional-when corpus

collosum is deficient, kids can't cross over hemispheres effectively

* Impulsivity, hyperactivity, anxiety, sleep problems-kids have

lower amounts of omega 3

* Omega 3 oils lift depression, reduce effects of FAS

* Lecithin (another fat) also calms mania

* Stordy, Dr. 1998 England study-2 groups of

students-dyslexia, dyspraxia, or ADHD-placebo vs. fish oil, vitamin E,

and primrose oil-found remarkable difference-published in Lancet-can be

drawn up on internet-found connection with these problems and lack of

essential fatty acids

* Symptoms of essential fatty acid deficiency vs. yeast

overgrowth-very thirsty, dry hair, dry skin, warts, chapped lips, glare

sensitivity-don't like bright lights,

* Vitamin A, D, E, & K-D comes from sunshine, K comes from

parsley

o Can be taken at same time-gelatin capsule

o Alternative product: Learning Factors (Natural Factors)-cheaper

b/c it's generic

o Max DHA-2 capsules

o Evening primrose oil-Efamol brand-2 capsules (500 mg each)

o Vitamin E-200 i.u.

o Young child-can open with pin and squeeze them or get liquid cod

liver oil; add vitamin E to it-check in SuperImmunity for dosage

o Be careful with vitamin A-can get toxic

o Can rub primrose oil on wrist-one capsule for infant

Week 7: Lecithin, 1 Tablespoon a day " The Mother of all good fats "

Refrigerated portion of health food store or vacuum sealed can (2T. for

adults)

* You can bake this into mini muffins and freeze them.

* Emulsifies fat, lowers cholesterol

* Component of myelin sheath

* Helps us digest & utilize oils

* Helps balance, coordination, auditory processing, calms nervous

system

* In Dr. Feingold's work, too

* goes well with fatty foods-p. butter, mayonnaise, yogurt, choc.

Pudding, shake

* soy product

* will see results in one week

Week 8: Pycnogenol (pick-noj-in-ole), 1 mg per pound of weight.

Helps focusing tremendously.it's the 'clean up committee

* Will help if child has a lot of allergies

* It's a bioflavinoid-comes from grapeseed extract

* It's an antioxidant, antihistamine, and anti-inflammatory

* can buy in a bottle

* will see results in one week

Other helpful things: Possible Week 9

* Liquid Trace Minerals-copper, lithium,

etc.-Concentrase-brand-can be very calming-SPD stuff-jump at sound,

labels bother them

A. Natural Medicines-cannot be taken with psychotropic

medicines-b/c they will immediately boost serotonin in brain

1. 5HTP, 2 mg per pound of weight from Nature's Way or

Futurebiotics at Healthfood stores

for aggressive kids-big behavior problems

* could do it right at the beginning or wait until the end if

child needs a little something more

* 5 Hydroxy Triptophan-Dr. Murray-5HTP

* B3 & B6 convert to triptophan (from turkey & milk) and

triptophan converts to serotonin

* Dr. Atkins-don't take if asthma is present-VitaNutrient Solution

* Used to reduce aggression, ADHD, OCD, Tourettes

* 2. Lithium Orotate, 5mg of Elemental Lithium.Don't take this

if on 5HTP

Natural mineral found in our soil. The supplement contains only a trace

amount. The calming mineral.

* Natural salt in body

* Dr. Carlton Fredericks-Psychonutition

* Essential trace mineral-can be found in health food stores

* Lithium is a transporter of minerals

* Helps with kids with high yeast overgrowth

* Talk to Dr. first!

* 5 mg capsules-no more than 3/day

* prescribed amount is 500 mg

* don't give with 5HTP

* brand: Atrium in health food store-if they don't have it, ask

them to order it

Re: hello again

,

I would recommend Nordic Naturals Omega Complete (3-6-9) Fatty Acids or

even

their Cod Liver oil and you can supplement with Borage Oil (Omega 6).

This

does work well or attention issues! I would also recommend supplements

just

as if you would be treating you 4 yo with autism. Many believe the ADD

is

also on the spectrum. As a teacher, the rise in ADD over the last 15

years

that I have been in and out of the classrooms has dramatically

increased!

B6 (P5P) and magnesium help too. Have you read on the ARI's website

regarding B6/magnesium therapy? This was the second plan of attack that

we

began when my son was 4. This year, for anxiety, we added 5-HTP (a

natural

'prozac') and this has help him overall since it is a precursor to

serotonin. Keep reading and learning. But when starting any protocol,

begin one thing at a time to see how she adjusts to it. If you add too

much

too fast and have problems, you don't know what the culprit is.

Jackie---

>I posted earlier about my 4 year old daughter with Autism. I would

> like to get some advice about my 12 1/2 year old daughter. She is

> severely learning disabled and the doctors say she has ADD. I do not

> want to medicate and am not a firm believer in ADD as a diagnosis. I

> believe there is some underlying problem. She is in all special ed

> classes at school. She is out of control, impulsive, and her grades

> are terrible. She says she is overwhelmed and gets stressed all the

> time. I do have five children so I know that can be chaotic. I just

> realized maybe I shoud try some of the things I do for my 4 yr old.

> The problem is any diet change would be very hard to explain to her

> and I have a hard time controlling what she eats or does in middle

> school.I thought maybe somebody would have some recommendations.

>

> Thank you

>

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Guest guest

> The problem is any diet change would be very hard to explain to her

> and I have a hard time controlling what she eats or does in middle

> school.I thought maybe somebody would have some recommendations.

She can use enzymes before eating. If you buy the HNI chewables, she

can just carry them around and chew one or two before eating anything.

http://www.houstonni.com/

Dana

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Guest guest

No,I am not sure. I thought about that.

Thanks

renee030670@... wrote:

My son says he feels like that and he was just dx with Asperger's. Are you

sure that your daughter is not showing signs of that?

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  • 3 weeks later...
  • 1 month later...
Guest guest

Hi Ann,

After my MGB I was extremely tired all the time. Dr. Underwood, my

gynecologist did testing on my hormones and found that I had no testosterone.

The DHEA piles and cream I take has made a big difference. I just thought

maybe your gynecologist may be able to check a little more into you hormone

levels.

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  • 2 months later...
Guest guest

How much CO do you take daily? Have you changed anything else?

Best Regards, & Chloey Ratliff

La Chorrera De Panama

From: Coconut Oil

[mailto:Coconut Oil ] On Behalf Of Stuck

Sent: Friday, July 21, 2006 9:15 AM

Coconut Oil

Subject: hello again

I have recently finished reading Coconut Cures and cooking with Coconut

Flour. I can't find CO with Lecithin ) anywhere near me. I am in

Connecticut. I have a couple of Bruce's books coming from the library.

Should be fun to read more. I am really looking forward to reading " The

miracle of Coconut oil " I am getting a new nick name of " Coconut Woman " LOL.

Hey it works :)

I have lost 22 pounds since the beginning of the year, but only been using

CO for about 2 months I think. and have lost most of my weight in that time.

still have a LOT to loose, but one day at a time. :)

Nice to be back. :)

S.

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Virus Database (VPS): 0629-1, 07/19/2006

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Guest guest

Even though I havnt read the book,does it really matter if the coconut

flour doesnt have lecithin?

Just have it seperately.This may save some bother.

Why it it recommended that to have lecithin IN the flour.

I wouldnt mind finding out how the better brands of coconut flour are

made.

Do they extract as much milk out of the meat before drying/grinding?

Or is it cut/dried/ground?

If the latter,this means that there is still a lot of oil in the

flour,which if you had enough every day,would be better than trying to

have the oil on its own as some have troubles with this.

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Guest guest

Coconut flour is made of the residue of coconut meat once all the oil has been

extracted.

s

Re: hello again

Even though I havnt read the book,does it really matter if the coconut

flour doesnt have lecithin?

Just have it seperately.This may save some bother.

Why it it recommended that to have lecithin IN the flour.

I wouldnt mind finding out how the better brands of coconut flour are

made.

Do they extract as much milk out of the meat before drying/grinding?

Or is it cut/dried/ground?

If the latter,this means that there is still a lot of oil in the

flour,which if you had enough every day,would be better than trying to

have the oil on its own as some have troubles with this.

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  • 3 weeks later...
Guest guest

Dennis,

Has your doctor talked about disabilty with you? I too have had three surgeries

including a fusion, and it's been 6 years since my last i'm now trying

everything i can to eleviate the pain. I see my spine specialist next monday and

i'm just going to tell her plainly and to the point " I just can't take the pain

no more " I'm tired of not sleeping, hurting the minute i get up, if i can,

until the minute i go to bed. There has got to be something that can be done in

this technology age.. you would think

Tonja

hello again

Hi everyone. I have been a member of this group for some time and

honestly haven't paid much attention to it. I do apologize for not

cooperating more. I really could use some support. I am also not

familiar with groups and postings and how to even effectively use this

forum. Before I write anymore, I guess any response would help. I

have had surgeries, fusions, treatments etc., etc., and have

absolutely no idea what to do or where to turn next. Nothing has

worked, I have lost my job, home, savings and just about everything

else at this point. I really need advice with medical, social service

and lots of issues. Any help or response would be greatly appreciated

and hopefully I can help as well! Thanks in advance.

Dennis

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Guest guest

Dennis, Mark from Boston here have you filed for SSDI? Has your doctor said

if your are permanently disabled or not? There are a ton of programs but

actually being qualified for any of them is the problem! You essentially have

to

be destitute and living on the streets to be able to get anything especially

if you have worked all your life and have saved a bit of money they shit on

you for actually trying to make a living. I also have had 7 surgeries over the

past 17 months and have had a bitch of a time with SSDI even after the

doctors all agree I CAN NOT GO BACK TO WORK PERIOD!!!

Good luck,

Mark from Boston

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Guest guest

I know exactly how you feel, it really sucks when you work all your life you

get hit with this and you look for help and there's nothing there unless

your living on the street or a drug addict!!

stop by and check out my journal page it will give you a little more insight

of what I've been through the last 17 months!!

As always good luck,

Mark from Boston

_http://journals.aol.com/immort1/PAININTHENECK/_

(http://journals.aol.com/immort1/PAININTHENECK/)

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  • 1 year later...

Jill,

No, you do not have to be fused to the sacrum to have flatback!

Many people who had their original scoliosis fusions, who were fused

to L3 or L4 have developed flatback. I was fused from T4-L4 with

Luque rods and developed it, in spite of the fact that Luque rods

are curved at the bottom in an effort to prevent flatback!!

If you get xrays again, be sure to stand with your knees locked

straight during the xray, regardless of how the technician may be

pushing and pulling you to a more upright position. If your knees

are locked, and you are unable to stand perfectly upright, then just

tell the tech that you cannot stand all the way upright and leave it

at that. The doc should be able to tell from the sagittal (side

view) xray if you have flatback. If you get your hands on the

xrays, you can try to look for it too. Find your C7 vertebra (don't

ask me how, but look up online how to find it!) and measure straight

downward and see if it lines up right over your S1 vertebra. If it

does not, then you likely have flatback. Or at least this is the

best way that I understand it from my flatback experience and from

looking it up on various websites. I had a forward lean of 13-15 cm

before my revision 6 weeks ago. Now I have a forward lean of about

4 cm, meaning that a line dropped straight down from my C7 vertebra

will fall 4cm in front of my S1 vertebra. So technically I still

have flatback, but because of some equilibrium and balance issues I

have from another medical condition (multiple sclerosis) my surgeons

thought it best to let me lean forward a little bit still.

Hope this helps!

>

> Jill from Florida here again. I sought you all out a couple of

years ago when I started having

> hip pain. I bypassed all the ortho's in my immediate area and

zeroed in on a revision

> surgeon in Miami to rule out Flatback and hopefully, get some

help. He, Dr. O'Brien, told me

> that I did not have Flatback. He could see plenty of DDD in L4

and L5 which are not fused--

> they are the poor ones beneath my current hardware that have taken

the brunt of twenty plus

> years. However, because of the hardware, the MRI was inconclusive

and basically offered to

> remove my rods. Not wanting to opt for surgery that had no

promise to actually give me pain

> relief, I said so long and found a pain management doctor in my

area. I've tried a couple of

> epidurals and just today had a facet denervation. My pain has

progressed especially since I

> sat at a baseball game for 6 hours one day...had crippling " pain

locks " for days after and still

> haven't been the same. I can walk upright for a short while in

the morning, then it's knuckle-

> dragging for the rest of the day, unless I can sit in my recliner

for a while. So...that said, I

> think I'd like to see that Dr. O'Brien or someone else qualified

and ask again, " Do you think I

> have Flatback? " I sure look like I do.

>

> My question for you: Do you have to be fused down to the sacrum

in order to have Flatback

> or can you have it and only be fused to like L3?

> Thanks. Sorry for the long post!

>

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Jill,

Any time you have lost some of either your upper arch or your lower

arch in your back - it throws you off balance and then you

have " flat back " . Your body was designed to have your body in

allignment - with your head directly over your shoulders - your

shoulders over your hips....and when you stand you should

be " sitting " on (or in) your pelvis and it should be effortless (not

counting your body naturally aching from standing from long periods

of time) It's not supposed to be the hardest thing in the world to

stand because you feel like you are going to topple over! When you

go to the grocery store - you have to lean on the cart to just hold

yourself up...when you empty the dishes from the dishwasher - you

have a hard time reaching where you used to be able to reach to put

the dishes in the cabinet and you stand on your tiptoes and use your

arms to stetch as high as you can - and your upper back aches because

all of your muscles are worked to capacity trying to do all the work

of your lower back!!

I'm not sure how it feels to have lost your curve in your upper back -

but I know how it feels to lose your curve in your lower...I had my

surgery 7 weeks ago and I am sooooooo happy I could cry!!! I LOVE

being able to stand with my legs straight and be nice and tall! When

I walked before with flatback - I leanded forward and took short

quick steps and my knees sort of went out and I used my arms a lot

which were swung away from me when I walked. I can NOT wait to get

out of my brace so I can see how I am supposed to walk again! I

can't wait to take normal or long strides (I'm tall and have long

legs) and actually use my hips and back the way they were intended to

walk! I was so tired of always having to bend my legs at the knees to

try and get comfortable when I stood over 1 -2 minutes! If I wanted

to stand up straight - I was forced to bend my legs! When I

straightned my legs I was thrown way forward. I went from a 13 degree

arch to a 56 degree arch! I just had my 6 week appt. and so far so

good - can't really tell how I am fusing yet - but everything is

still in the right place and my arch is still there as beautiful as

ever - as when they put it in 7 weeks ago! I love to stand without

my brace and look at my arch in the mirror and to be able to stand up

straight with straight legs!

I hope this helps you understand a little more about how someone

feels with flatback. From what I understand - even a little bit of

your arch being a little bit " flatbacked " throws off your whole

allignment of your body.

I had so many hurtful....hateful....mean comments said to me when

people saw me walking the way I did.

I went on my first cruise last February and was in San P.R. and

was having a VERY hard time walking to see the shops and things. We

only had a few hours to see it before we needed to get back on the

ship - and I wanted to see it all so bad - but was so limited because

I hurt so much when I walked or stood - and I walked like a " duck "

(was told that by several people in the last 15 years (yeah I laughed

but it hurt me)

Well, we were trying to get back to the ship because of my pain and I

was walking fast with my legs out and forward and hunched over and

holding my husband's hand as he was trying to hold me up...a lady in

one of the shops kept yelling for us to go in her shop and look at

her things - and I smiled and said " no thank you " and kept walking

and I guess she was upset because we didn't go in her store and just

walked by, because she yelled " what's wrong with you? Why you

walkin' like that? Did you get too much " d " last night with your man

or a bunch of men? "

We just kept walking...but as dumb as it is to listen to a stranger

with no morals or tact or sense of being civilized...I was so hurt by

that! That was the meanest anyone has ever said to me about the way

I walked - but several times - in fact - lots of times - people have

said things that really hurt me because of the way I walked or stood

or looked. I guess I didn't have a brace on or wheelchair or

crutches so people didnt' consider me handicapped from so many

surgeries...but so many times I heard comments like " what's wrong

with you? Why are you standing like that " or " are you o.k.? you look

like you're about to fall over from being so tired " or " I could tell

that was you coming a mile away from that walk you have " or " stand up

straight - you look prettier when you stand up and have good posture "

or " ha ha ha ha - you look like you're about to attack me or

something walking so fast toward me with your arms out like this and

your fast walk ha ha ha " (and then they would imitate me) or the best

is because I work with kids and they imitate the adults for a skit or

something in fun and the person who immitates me walks like me and

acts like me when I am standing....I KNOW most really meant NO harm.

I am a VERY happy go lucky, joking, great sense of humor person who

is really outgoing - so I guess a lot of times from friends they just

didn't realize what they were saying or expected me to just laugh it

off with them and agree with them. But a lot of times they were from

the cashier at Wal-mart or a stranger in the parking lot.

The comments hurt - but I knew that they didn't know what I had been

through with 6 surgeries and a LOT of pain in the last 15 years that

they would NEVER understand nor could I ever put into words - and I

was trying to make the best of things. I let it roll off my back (no

pun intended)most times - but the comments hurt still! I didn't feel

pretty or young that's for sure. Here I have this HOT looking

husband - and beautiful boys and I felt like I somehow got off the

train and our family just didn't match with me in it. I dealt with a

lot of self esteem issues with how I looked- the weight gain and body

issues of my flatback status.(which to be honest with you - I didn't

even have a name to call my problem until this past year when my

doctor said it...I thought it was just ME from my big fusion surgery

in '94. I found this website after that and realized there was a

name to all of this.

I am sooooo happy now though - obviously not just for cosmetic

reasons - but because my pain is so much better and I don't ache all

the time in my upper back from trying to stand up straight. This

past year my friends (this didn't hurt me I promise because of who

these people were and I know they were my biggest supporters of my

back) nicknamed me " flatback " . These were people who had been by my

side with the last couple of surgeries bringing me food and visiting

me at the hospital and cleaning my house etc....so they said it

in " love " and I actually like the name because I finally had a name

for it and I was scheduled for surgery to get rid of it! My friends

tell me now they can't call me flatback anymore and have to find

another nickname for me....maybe " swervy curve " or something ha ha.

I'm sorry this is so long - but just airing out my feelings and

showing you all how I happy I am with my surgery and feeling a lot

better (NO not perfect and NO not great yet at all) from my surgery 7

weeks ago. Right now I am dealing with issues from having lost so

much blood and having 7 blood transfusions. I got bloodwork done

this week and I am pretty low in all the areas - so I am going to try

and build up my blood more and take more iron and vitamins - I am

just exhausted all the time - I guess I should feel that way after a

12 hour surgery though huh? It will take a while I'm sure!

So Jill - everyone is different I know - but I hope this helps you

see if maybe you are flatback? You may feel worse than I did or

maybe not as bad - but you could still have flatback if you have lost

some of your " swerve in your curve " ha ha

- glad that you are home - take it slow - hang in there!

Debbie Warren

> >

> > Jill from Florida here again. I sought you all out a couple of

> years ago when I started having

> > hip pain. I bypassed all the ortho's in my immediate area and

> zeroed in on a revision

> > surgeon in Miami to rule out Flatback and hopefully, get some

> help. He, Dr. O'Brien, told me

> > that I did not have Flatback. He could see plenty of DDD in L4

> and L5 which are not fused--

> > they are the poor ones beneath my current hardware that have

taken

> the brunt of twenty plus

> > years. However, because of the hardware, the MRI was

inconclusive

> and basically offered to

> > remove my rods. Not wanting to opt for surgery that had no

> promise to actually give me pain

> > relief, I said so long and found a pain management doctor in my

> area. I've tried a couple of

> > epidurals and just today had a facet denervation. My pain has

> progressed especially since I

> > sat at a baseball game for 6 hours one day...had crippling " pain

> locks " for days after and still

> > haven't been the same. I can walk upright for a short while in

> the morning, then it's knuckle-

> > dragging for the rest of the day, unless I can sit in my recliner

> for a while. So...that said, I

> > think I'd like to see that Dr. O'Brien or someone else qualified

> and ask again, " Do you think I

> > have Flatback? " I sure look like I do.

> >

> > My question for you: Do you have to be fused down to the sacrum

> in order to have Flatback

> > or can you have it and only be fused to like L3?

> > Thanks. Sorry for the long post!

> >

>

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Debbie,

Thanks for writing out your feelings about that. I'm sorry to hear

that people have made such fun of you. I guess some people just

have no idea how their words/actions can hurt others so deeply.

I've gotten made fun of " jokingly " from some of my husband's family

and it really hurts. Especially since they're family. Because of

severe leg weakness, spasticity, and balance issues, I would often

have problems when I tried to stand up from a couch. Especially if

I had been sitting for a while - I'd have a lot of stiffness and

look more like I was 90 instead of 30. I'd either fall back down,

or when I got myself up my legs would twitch and bounce (from

spasticity) and about knock me over. A few times they would laugh

and jokingly copy me and say " funny " rude things. I smiled and

pretended to laugh, but it really hurt bad that they would make fun

of me for it. Or a few times they made comments that my 2 year old

walks better than me. That one hurts a lot too. I also have

problems with bladder incontinence - so I wonder if they find that

out if they'll laugh that my 3yr old has better bladder control than

me? They think it's funny and that it's all in jest, but it really

does hurt.

So anyways, thanks for writing so passionately about your feelings

on this. I haven't been walking much yet since my revision, but I

hope that I too will be able to show off my beautiful new curvy

body :) I've already had a few people comment on how much

straighter I am and what beautiful posture I have. I love it! It

inspires me to work harder on getting well :) When will you be done

with your brace? Be sure to post some pictures when you get the

chance - especially if you have " before " and " after " ones to compare!

>

> Jill,

> Any time you have lost some of either your upper arch or your

lower

> arch in your back - it throws you off balance and then you

> have " flat back " . Your body was designed to have your body in

> allignment - with your head directly over your shoulders - your

> shoulders over your hips....and when you stand you should

>

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