Hi new to the group

December 31, 2004

Tropical traditions has a book they have written on the subject. Its alot of the

same informationn that is available on their website compiled in book form.

http://www.tropicaltraditions.com/book_virgin_coconut_oil.htm

My favorite book is the Healing Miracles of Coconut Oil by Bruce Fife

http://www.wildernessfamilynaturals.com/

http://www.wildernessfamilynaturals.com/mall/book_order_page.asp

They have ssome other great books there too

IN NC

>

> Hi I was just wondering if there is a good book about organic virgin

> coconut oil that I can read. I use it everyday. I just want to share

> the info with family members.

>

> ALso a good cream for the face for coconut oil. I know it is very

> good. I also have epilepsy so I am sure it helps that too. But I would

> like more info on that also.

> Thanks

>

December 31, 2004

,

Yes, there is an excellent book on coconut oil. It's called The Coconut Oil

Miracle. It is available at your local bookstore and on Amazon.com.

Bruce

Hi New to the group

>

> Hi I was just wondering if there is a good book about organic virgin

> coconut oil that I can read. I use it everyday. I just want to share

> the info with family members.

>

> ALso a good cream for the face for coconut oil. I know it is very

> good. I also have epilepsy so I am sure it helps that too. But I would

> like more info on that also.

> Thanks

>

January 1, 2005

Bruce,

Are you the one that wrote this book? Also, does this book help with epilepsy?

Grace

Bruce Fife <bruce@...> wrote:

,

Yes, there is an excellent book on coconut oil. It's called The Coconut Oil

Miracle. It is available at your local bookstore and on Amazon.com.

Bruce

Hi New to the group

>

> Hi I was just wondering if there is a good book about organic virgin

> coconut oil that I can read. I use it everyday. I just want to share

> the info with family members.

>

> ALso a good cream for the face for coconut oil. I know it is very

> good. I also have epilepsy so I am sure it helps that too. But I would

> like more info on that also.

> Thanks

>

January 1, 2005

Thanks everyone for your help. I will check it out.

>

> Hi I was just wondering if there is a good book about organic virgin

> coconut oil that I can read. I use it everyday. I just want to share

> the info with family members.

>

> ALso a good cream for the face for coconut oil. I know it is very

> good. I also have epilepsy so I am sure it helps that too. But I would

> like more info on that also.

> Thanks

>

April 7, 2006

Helen, welcome to the group. I am sorry to hear your son is having the trouble that he is in eating. I know it is distressing for you to watch him go through this. Has he had any dilation's or surgery yet? Where are you located at?

Take some time to look over the group site and also try and read some of the past posts. There is a lot of information there. Once again welcome to the group.

in Suffolk

In a message dated 4/8/2006 5:04:54 AM GMT Standard Time, smith5210@... writes:

Hi. I am new to this web page and I and here on behalf of my 14-year-old son who was diagnosed with Achalasia about 18 months ago. When first diagnosed Tom lost about one stone in weight. He has tried Nipedofine(?) to no avail. Now he takes 20-40mg opmetrozole at night, as he can be up all night coughing/choking. Tom has now adapted his own way of eating i.e. putting his hands on his head and 'stretching' his esphogus. He still has lots of trouble eating and drinking so any help or info would be gratefully received.Thanks from a concerned mom, Helen.

April 7, 2006

hi, Helen,

everyone within this group shares same or similar symptoms. before

your son goes to bed, ask him to drink a lot of water. Water won't go

down however, it will go up and clean the esophagus so that he will be

coughing and choking at night.

Quincia

-- In achalasia , " tom210491 " <smith5210@...> wrote:

>

> Hi. I am new to this web page and I and here on behalf of my 14-year-

> old son who was diagnosed with Achalasia about 18 months ago. When

> first diagnosed Tom lost about one stone in weight. He has tried

> Nipedofine(?) to no avail. Now he takes 20-40mg opmetrozole at night,

> as he can be up all night coughing/choking. Tom has now adapted his

> own way of eating i.e. putting his hands on his head and 'stretching'

> his esphogus. He still has lots of trouble eating and drinking so any

> help or info would be gratefully received.

> Thanks from a concerned mom, Helen.

>

April 7, 2006

Hi, Helen. My 14-year-old son Mark was diagnosed with achalasia

two months ago.

I think a stone is 14 pounds, isn't it? We don't use that

measure in the States.

Isosorbide dinitrate (nitroglycerin) helps more people with

achalasia than Nifedipine and takes effect faster. My son tried

it today for the first time, dissolving a tiny tablet under his

tongue, and was able to finish his dinner successfully.

He will most likely have surgery after the end of the school year

in June. This is what all the doctors have recommended.

For sleeping at night, have you elevated the head of Tom's bed?

It helps to put a brick under two legs and use extra pillows or a

wedge pillow. That made a big difference for my son. Some

people even sleep upright in a recliner.

Where are you located? What has your doctor told you about

treatment other than medication?

in Lancaster, PA

Hi New to the group

> Hi. I am new to this web page and I and here on behalf of my

> 14-year-

> old son who was diagnosed with Achalasia about 18 months ago.

> When

> first diagnosed Tom lost about one stone in weight. He has

> tried

> Nipedofine(?) to no avail. Now he takes 20-40mg opmetrozole at

> night,

> as he can be up all night coughing/choking. Tom has now adapted

> his

> own way of eating i.e. putting his hands on his head and

> 'stretching'

> his esphogus. He still has lots of trouble eating and drinking

> so any

> help or info would be gratefully received.

> Thanks from a concerned mom, Helen.

>

April 7, 2006

Dear Helen,

Please tell us what treatment he has already had. I posted last night about my views. There are some experienced Moms here. Achalasia is a very isolating disease, your son may not be able to express that to you. For many of us depression goes along with it.

I'd suggest doing whatever you can to get treatment so he doesn't have to go through contortions to get food down. The danger is that he is packing in the food tighter in his esophagus, making his esophagus stretch, making treatment in the future less likely to be successful.

As I posted last night my opinion, since you asked, is to get treatment ASAP from the best experienced doctors you can find that leaves your son's eating in a somewhat normal way. If he is less than about 70% of normal, then I'd be nagging doctors for surgery, skipping a dialation. He will never be normal again, but the food can go down well with just water. With treatment he should get back to 80%+ of normal, most of us, with successful treatment, are back to 90%+.

If for some reason his eating starts slipping back down, I'd take him back and get more treatment before he gets down to 20% or so. Esophagus removal and feeding tubes start becoming the only option if the esophagus gets so stretched it gets develops pouches and starts twisting. It can get so large it pushes against the lungs and heart. To me the key to long term success is preserving the original shape of the esophagus as long as possible.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

This is my favorite website... it has summaries of all the articles from all over the world. Search for achalasia and anything else you like, even doctors' names.

On another subject... regarding this website, I haven't ever seen any articles about successful treatment for achalasia with herbal drinks and acupuncture. I don't mean this as a confrontation. Lately there has been a lot of posts about non-Western methods. Where would most of us find these articles? I assume there are some studies or something? I would really love to learn more. I mentioned last night I have had some luck w/ yoga and biofeedback for other medical conditions so I am open to learning more.

Quincia, and others, can you find these articles, maybe translate for us? Even if a summary, that would be wonderful. I have to admit concern for some who may put off Western medical techniques while they wait for the other methods to kick in.

Please don't take this as confrontational, I just like to read the original studies rather than rely on anecdotal evidence. My Gramma used to use green mint drops in a special bottle to "cure" ear infections and everything else that ailed us. I swore it worked. I've looked for them in the drug store and haven't found them. Just a drop will do 'ya. It was very magical and I believed. So I'm not opposed to non-Western treatment. Anyone who is using these methods willing to translate?

Sandy in So Cal.... spending the night at a Brownie campover tomorrow night... OH MY... so not me. Even though I grew up in the sticks of Montana, I'm done will all that roughin' it, in other words I know outhouses well even less than outhouses, if you know what I mean. Air mattresses aren't my idea of a night away, but my daughter is thrilled and I'll have a fun time, I'm sure... but OH MY..... No Bravo and HGTV fix it shows on Saturday night, quite a sacrifice.

PS Helen, the coughing and choking at night is probably aspiration. That can be very dangerous, he can end up with a nasty lung infection. Are you seeing a well-informed doctor? Achalasia is very rare and you have to climb up to the heads of departments of large teaching medical centers to get to doctors that have good experience with achalasia usually. In general, you are delaying the inevitable unless you are working with these top experienced doctors immediately. Even gi's in large cities will only see one or two achalasians in their whole career, let alone a teenager. You really want gi's and doctors that see hopefully 50+ patients a year. At least esophagus specialists if you are in a more isolated area, that see Barrett's esophagus and treat esophageal cancer and are comfortable doing surgery on the esophagus.

>> Hi, Helen. My 14-year-old son Mark was diagnosed with achalasia > two months ago.> > I think a stone is 14 pounds, isn't it? We don't use that > measure in the States.> > Isosorbide dinitrate (nitroglycerin) helps more people with > achalasia than Nifedipine and takes effect faster. My son tried > it today for the first time, dissolving a tiny tablet under his > tongue, and was able to finish his dinner successfully.> > He will most likely have surgery after the end of the school year > in June. This is what all the doctors have recommended.> > For sleeping at night, have you elevated the head of Tom's bed? > It helps to put a brick under two legs and use extra pillows or a > wedge pillow. That made a big difference for my son. Some > people even sleep upright in a recliner.> > Where are you located? What has your doctor told you about > treatment other than medication?> > in Lancaster, PA> > Hi New to the group> > > > Hi. I am new to this web page and I and here on behalf of my > > 14-year-> > old son who was diagnosed with Achalasia about 18 months ago. > > When> > first diagnosed Tom lost about one stone in weight. He has > > tried> > Nipedofine(?) to no avail. Now he takes 20-40mg opmetrozole at > > night,> > as he can be up all night coughing/choking. Tom has now adapted > > his> > own way of eating i.e. putting his hands on his head and > > 'stretching'> > his esphogus. He still has lots of trouble eating and drinking > > so any> > help or info would be gratefully received.> > Thanks from a concerned mom, Helen.> >> >>

April 8, 2006

toomuchclutter wrote:

On another subject...

regarding this website, I haven't ever seen any articles about

successful treatment for achalasia with herbal drinks and acupuncture.

I don't mean this as a confrontation. Lately there has been a lot of

posts about non-Western methods. Where would most of us find these

articles? I assume there are some studies or something? I would

really love to learn more. I mentioned last night I have had some luck

w/ yoga and biofeedback for other medical conditions so I am open to

learning more.

There are some articles on the UTMB page of Dr. Jiande Chen (impressive

resume), "GI Pacing", at:

http://www.utmb.edu/gipacing/

For starter you may want to try:

http://www.utmb.edu/gipacing/Acupuncture.pdf

Which is one of a few at:

http://www.utmb.edu/gipacing/acupuncture.htm

Much of what is done as "acupuncture" now is really a type of TENS. You

can find more articles by searching for TENS and achalasia. Also, a lot

of the acupuncture information that is relevant has to do with lowering

LES pressure and increasing VIP. Searching for these with "acupuncture"

may get some hits. The article I suggested is not achalasia specific

but it lays out some of the basics behind the theory of using it for

things like achalasia, which is shortly discussed. Also, it has a large

bibliography. I have not tried to look for the cited sources. I look

forward to your opinion of what you learn.

So

I'm not opposed to non-Western treatment.

Same here. I do have some concerns and there are some views and

assumptions that some people, not all people, who are into

"alternative" medicine make that drive me a little nuts, but I am open

to the idea that some of it may really work.On the other had some, not

all, of western medicine does not work. I reserve the right to be

skeptical of them all, western, eastern and what have you. As I have

said before, no form of medicine is pure science. Which is not to say

that there is not a medical science though.

notan

July 27, 2006

Meeghan

Welcome

I hope you read my welcome note.

is a disorder diagnosed ONLY via ruling out other disorders.

It does not sound like much testing has been done. Please browse the archives

and check out the file section.

We have seen an increase in some demographic regions where doctors are calling

periodic fever disorders without doing an appropriate work up which takes

MANY months to complete. There is current research going on as mentioned in my

welcome.

Once the other disorders and the genetic disorders are ruled out, then a

probable diagnosis of may be made. As for Prednisone it works on

with pros and cons and it ALSO works on some of the genetic fever disorders.

Please educate yourself here and prepare yourself to teach many people about

PFSs!!

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

July 27, 2006

On Thu, 27 Jul 2006 21:29:22 -0000, Meeghen wrote...

hi,

we all sympathize with your frustration because we have been there.

our daughter has a wonderful rheumatologist who put her on Cimetidine

(Tagamet) and this has worked wonders for her. She has been on it for

6 months now is is virtually fever free. YOu may want to research

this drug and talk to your doctor abut it. Good luck.

Kris (mom to age 6 Pfapa for 4 yrs)

July 27, 2006

Hello,

My son Blake now 3 1/2 has been on Cimetidine for nearly a year and fever free

as well, we love it! I am so glad I found this group and an Infectious Disease

doc that believed me that my son was sick, more than the usual virus/childhood

sickness.

Felicia

, CO

Blake 3 1/2

Caitlin 10

Alec 11 mos

Krisandra Warren <kwarren@...> wrote:

On Thu, 27 Jul 2006 21:29:22 -0000, Meeghen wrote...

hi,

we all sympathize with your frustration because we have been there.

our daughter has a wonderful rheumatologist who put her on Cimetidine

(Tagamet) and this has worked wonders for her. She has been on it for

6 months now is is virtually fever free. YOu may want to research

this drug and talk to your doctor abut it. Good luck.

Kris (mom to age 6 Pfapa for 4 yrs)

---------------------------------

Music Unlimited - Access over 1 million songs.Try it free.

July 27, 2006

Hi Meeghen,

Your daughter's story so far is my daughter's to a

tee. She started her fevers at 23 months - she was

the healthiest child up until then and I thanked God

frequently for my luck. It took about 5 episodes

before anyone was willing to look beyond the " it's a

virus " theory but finally we were referred to an ID

doctor who took blood samples during and after an

episode. Her SED rates were high during the episode

and this is pretty much all they went by when they

diagnosed her with .

It has been over a year now since her first episode

and we are still trying to make sure every rock has

been turned regarding her diagnosis. We are now in

the midst of pursuing genetic testing. She has been

on Prednisone since her diagnosis which has changed

our lives. The episodes come much more frequently now

but she is MUCH less bothered by them. My daughter is

very small as well - I think she weighed about 19 lbs

when she was diagnosed. She is now 37 months and

25lbs.

I know I'm not much help but sometimes it is just nice

to know that there are others out there who know

exactly what you are going through because they've

been there!

I wish you good luck in receiving the proper diagnosis

for your daughter.

Best regards,

--- Meeghen <meeg@...> wrote:

> Hi, My name is Meeghen and my23m old daughter was

> recently

> (tenetively) diagnosed with and I'm trying to

> find some info.

> She's on her 5th fever now. We saw the peditrician

> for the first

> time with the last episode 3wks ago and have not

> taken any action as

> of yet. We have consulted with an immunologist but

> have not had an

> appointment with him, though he didn't seem terribly

> helpful on the

> phone I'm not sure what an actual visit will do for

> us. His basic

> summation was " Its a mystery " .

>

> She has been very healthy up until the fevers

> started, she's hardly

> had a cold! I have 4 other children who were plagued

> with ear

> infections, stomach viruses, etc so I was pleased

> not to have a

> single sick child visit to the peditrician until

> now. She acts very

> ill when she has the fever and refuses to eat or

> drink anything-

> she'll even say it doesn't taste good if she does

> take a bite/sip of

> something. This is my biggest concern as she is tiny

> for her age

> (20lbs now at almost 2yrs).

>

> She had a full panel of blood work done during the

> last episode

> which revealed nothing. Our peditrician suggested

> prednisone but I

> wanted to look into that further before giving

> steroids to such a

> tiny girl.

>

> Sorry this is long and rambling, this is all new to

> us! I am

> wondering what is the next step?

> Meeghen

>

__________________________________________________

August 9, 2008

Welcome, ask lots of questions and someone will have an answer. I know

nothing of making milk. But check with www.tribestlife.com. They have a

soymilk maker that also does raw almond milk. Call 888-254-7336 and ask

for a catalog. In the mean time go to www..com and there is

info to sprout most anything.

ew

Hi new to the group

Date: Sat, 09 Aug 2008 16:49:43 -0000

Hello to everyone, I am new to this group and sprouting. I bought a

book called " The Raw 50 " By Carol Alt, after reading an article about

her and eating raw. In the book she has a section on germinating and

sprout and how to make almond milk. I had no idea you could make nut

milk. I have yet to sprout anything and I have a book coming in the

mail to help me. I have made almond milk several and not sure if I am

doing it right. I soak almonds over night and I am wondering if the

almonds supposed to be soft and mushy? Because mine still feel pretty

hard. I am looking forward to sprouting and learning from you all.

Sunshine makes the flowers dance.

Anon.

--

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August 9, 2008

PS: If you want to know about the different sprouting devices, ask.