Re: Digest Number 249

[Guest guest]

Aloha, Everyone!

I have just started reading the list again. although i have a huge backlog

of " issues " to go through. so I don't know what's been going

on--especially the controversy over Ampligen.

I have just been extremely tired lately--I had had more energy for the past

year or so. I don't know what brought this on--nothing different in my

life. I do have far less pain and my brain fog has greatly diminished,

although it isn't gone. I credit Klonopin for improved sleep and better

concentration/memory, etc.

Someone asked about Dr. Jay Goldstein. It has been about 4 years since I

went to him, so I don't know what he's up to now in the way of treatments.

I really liked him personally, and spoke to a number of other patients who

really thought he'd helped them a lot. I went to him for about 6 weeks,

once a week and took all the meds he thought were most likely to help me.

None of them helped and in fact one of them (I think it was Wellbutrin)

made me MUCH worse. He certainly is knowledgeable, but after that bad

reaction to the medication I didn't go back to him. If I lived near his

clinic I think I'd give him another try.

It's the same as everything else with this illness--we all seem to react

differently to different treatment/meds. I'm super-sensitive to

medications and only take 1mg. of Klonopin per day and 1cc of Kutapressin,

and my old standby, extra Strength generic Excedrin. I also still take

various supplements/vitamins Dr. Cheney recommended. but I haven't seen

him in over a year.(haven't tried Immunocal yet--can't afford it).

Love and prayers to all,

Teeza in Honolulu

P.S. I understand that there's supposed to be a product that's essentially

the same as Immunocal but costs less. They carry it, or are going to carry

it (I don't know if they have it yet) at Sun-Ray Supply. Don't worry-I'm

not affiliated with them....

[Guest guest]

At 10:29 AM 8/12/99 -0000, you wrote:please remove me from list

>

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

[Guest guest]

LaRita -

Hey! Thanks for the info. I hope I don't have to have the surgery period.

But you know how those things go.

I had the ultrasound on Thursday. The tech said it wouldn't hurt. And it

didn't, except when she pressed the thing on my liver. OUCH! Wasn't

expecting that at all. Anyway, I kept asking her what she thought but she

said she couldn't tell me! Against hospital policy. Not even any facial

expressions! Had to have gone to card school or something! :-)

She did say something to the effect of why the Dr.'s thought the liver count

was high. So I read between the lines and figured she didn't see anything.

So if that's true I will have to have a biopsy. ERRRRRRRRRRRR. I'm not

happy about that.

But I'm keeping my fingers crossed!

How's everyone's weekend going?

le

[Guest guest]

I took Arava for 6 weeks. Had to stop because of it bothering my

stomach, but in that short time I did notice alot of extra hairs in

the brush. The info in the Arava starter kit my RD gave me did list hair

loss as a side effect. I am very " tuned in " to hair loss as I lost alot

of hair last May due to a severe reaction to Sporanox, an antifungal,

Turns out my nail fungus is psoriasis. I also had a torn tendon in my

right foot. It was the posterior tibial tendon and I had surgery last

Dec. It is doing much better now. It had just started to swell and hurt

for no reason. My foot was starting to turn outward and it has corrected

that. At least for the moment! Anyway the foot problem was a blessing in

a way because the surgeon recommended getting to a rheuatologist and I

was finally diagnosed with PA after a couple of years of trying to

convince the docs that something was wrong with me. Just wanted to share

this with you. Good luck! By the way my RD said not to throw my Arava

away because we might go back to it. She said she is seeing great

results with it. Said that I was the only one that told her it bothered

their stomach!

[Guest guest]

Welcome Hale!!!

As you might already realize, I am a social worker with 3 kids and a

husband with ocd and depression. I have dysphimia. My son, now 16, sounds a

lot like yours.

Perhaps you can share some examples and I, and the others, will give our

humble opinions on what might work! I agree when you say that you love your

son soooo much. Tom (pronounced tome) went through a period that I couldnt

touch him. It was so hard for me. His father still cant touch him. Now, I

can put my hand on his shoulder, and the other day, he gave me a hug!!!! His

sisters are very cautious around him. He used to beat us when we didnt give

in to his demands. Controlling the household morally, physically and dealing

with his emotional needs, were high on his list!

Tom also takes anafranil and zoloft. They dont work with his rages

though. We have him in a group home until he can control himself. He has 3

assault charges against him and is on probation as a young offender. Once he

is 18, the record will be erased, but if he offends again, he goes to adult

jail. This makes ME very nervous!

Tom was born in Israel, and speaks with a slight lisp. His first few

years here were awful. Kids called him a & *%$# immigrant, smashed his head

into lockers, teased him about his vocabulary, etc. I always encouraged him

to read and speak in english, but this doesnt seem to have been enough to

prepare him for school and socially in Canada. My girls dont have this

problem, I think because they were younger.

I am going to the Behavioural Therapy Institute's 3 day course on

Cognitive Behavioral Therapy for ... OCD in New Orleans this weekend. My

plan is to open a private practice for families of ocd kids, and begin

working with cbt for ocd using the ERP method as much as possible. Perhaps

you could suggest this to the therapist that is working with your son??

There is another course in Feb. in Florida. Locally, the doc's tend to go

for meds and keep the kids drugged, but do not do therapy as such.

A word for the future: please, delete unnecessary messages at the end of

your replies!! Please feel free to comment and remember rule #1: TAKE CARE

OF YOURSELF!!

best wishes, wendy in canada

[Guest guest]

I'm new to the list - having spent about 3 weeks just reading and finding out

that amazingly I'm not alone out here. While I am a doctoral level

psychologist, all that know-how seems to go out the window when I'm dealing with

my 16 year old that we just diagnosed as OCD. He's had various diagnoses since

childhood - add, adhd, depression, central auditory processing deficit (very

real learning problem - though bright!)etc, etc. He is on meds for the

depression (zoloft) and meds for the ocd (anafranil). He had therapy for rages

and acting out as a youngster (about 5th grade), but refuses to go now. We're

going to a psychologist to help us through the trials. The explosive child is a

good book and I'm almost through it. I'm afraid I get sucked in to the deep

depression and frustration of my son and make things a lot worse. We're dealing

with the " no one likes me " , " I'm ugly " , I'm dumb, I'll never get a girlfriend.

He sets goals for himself and then obsessively works toward them (a functional

approach) but is devastated if he doesn't reach the perfection he's set for

himself. Add to allllll of this: he's adopted and Korean in a small Oklahoma

town. We have to deal with the comments from idget teens about his being

" chinese boy " or " chink " and other lovely comments. My husband and I spend a

lot of time walking on eggshells so that we don't set him off, while trying to

balance making him accountable for chores, etc. My son is the love of my life,

but I get so frustrated with not knowing what to do to help him be more positive

about his daily life. I hear " I hate myself " at least daily and we just keep

working minute by minute to convince him that he's an ok kid. Enough. Thanks

for listening.

>>> <onelist> 10/03 5:37 AM >>>

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There are 6 messages in this issue.

Topics in today's digest:

1. Re: Digest Number 247

From: Jackie48hr@...

2. Re: Home

From: Knod <kelly@...>

3. Re: A New Milestone

From: Kathy Hammes <kathyh@...>

4. Re: re: new book

From: Kathy Hammes <kathyh@...>

5. Re: haircuts, enabling and groups!

From: Kathy Hammes <kathyh@...>

6. Re: Special E & RP Session Today

From: Kathy Hammes <kathyh@...>

[Guest guest]

Can you give me some info. on the workshop that is New Orleans this weekend.

Are there guidelines on who can attend, where is it going to be and who do

you contact? Thanks, h512@...

[Guest guest]

Brain, I just wanted to respond to your letter. I also live where they act

like they never heard of candidacies! But I hope and pray for you and all of

us, health and happiness. Hope you feel better.

[Guest guest]

Hi ! I'd like to know if anyone has tried the thymic formula ?

[Guest guest]

In a message dated 07/22/2000 4:09:17 AM Eastern Daylight Time,

egroups writes:

<< He expresses himself

through facial expressions, some vocalizations that are starting to

become more consistent. He will reach for things he wants. I would

really appreciate any direction you could give! Thank you so much.

>>

Hi. My son started with aba at age 8.5 yr. and did very well. At age 12 we

switched over to more NET using DTT only for very new material. He is doing

very nicely with it. I trust it will help your child. It is just a good way

to teach. Goodluck. Carole

[Guest guest]

Dear Sharon:

You are absolutely right about drawing from the pen barrel and using

it as a " vial " , and I was not thinking of taking it FROM the pen into

something else, and I should have. I was thinking of alternatives to the

needles and hubs that are screwed onto the pen, but, still using the pen

as the injection instrument. Also, if anyone ever gets stuck like this,

and you can get needles and syringes, you want to get the highest gauge

as possible, and it should not be any longer than 3/4 of an inch, (the

higher the number on the gauge of the needle, the thinner it is. For

example, a 25 gauge needle is much thinner than a 22 gauge. So, if

possible, try to get a 29, 30 or 31 gauge needle.) Marty

Sharon writes:

Actually, Marty, I have used a regular needle to draw up the interferon.

What happened was, my husband and I separated and I lost a huge income.

Since I have a huge co-pay on all of my families Meds, I had to make a

choice

one month, pay the mortgage on my home, or get my combo Meds. So, you

can

imagine which one I chose!

I had to wait an extra week to gather my funds together before I could

get

the next months Interferon/Ribivarian package.

During that week on my regular scheduled shot days, I bought 3 needles,

27

gauge insulin needles, and just used the pen to draw from, just like a

vial.

It worked but I don't recommend doing it every time!

Since I am not much of a needle person, I was terrified that I would

" break

off the needle " or something like that, but I got over it on the second

day!

Here in Arizona you can buy needles at any pharmacy. I know it's

different

around the country, so you would have to check with your states laws.

Necessity is the mother of all invention.

Sharon Nicholson

[Guest guest]

Dear Winnie:

Did you get to see the sites I posted to figure out who is your

Congressman/Senator, their addresses, and email contacts? Marty

[Guest guest]

Dear :

Your platelets are too low, in general. I am not sure why they have

not tried a transfusion, of something to stimulate your production. I

think the reason they won't place you on the therapy is that it surpress

platelet production in everyone by itself, in your case, it could place

you into a deadly situation.

Have you seen a hematologist for suggestions? They deal with all

aspects of blood and products related. They may have some suggestions

and you deserve the chance. No promises, but it's worth another

perspective. This is something also seen in treating people with cancer

where their body is surpressed in producing certain aspects, or all

types of blood cells. If you haven't, I would push for that, and see if

they can get you into a range that would allow some treatment. Marty

[Guest guest]

Dear maureen

I would like to add another competency to your ever growing list - skills

in community development. What's been suggested so far is excellent but

does really centre on HV-client interactions. There is another dimension

to the role (only one?!) - working to promote health in the community, and

CD skills are vital in this area. Hope this is helpful and not too

heretical.

Gill Newell

Digest Number 249

[Guest guest]

>To answer ICDanRokky, I switched from sotalol to amiodarone because the

sotalol caused " profound fatigue. " I didn't get zapped, but I always felt

like I was dragging an elephant around. Like everyone here, it seems it's

hard to tell what part of how you feel is your medical condition and what

part is from the meds. The doctor told me I would get used to the sotalol,

but that never happened even after three years.

[Guest guest]

Janet,

Does your ICD regularly pace you so your heart beats at a normal minimum

(~60)? My doctor told me sotalol does slow the heart down (hence fatigue)

but that can be overridden by the ICD routinely pacing.

> I switched from sotalol to amiodarone because the

> sotalol caused " profound fatigue. " I didn't get zapped, but I always felt

> like I was dragging an elephant around. Like everyone here, it seems it's

> hard to tell what part of how you feel is your medical condition and what

> part is from the meds. The doctor told me I would get used to the

sotalol,

> but that never happened even after three years.

[Guest guest]

Hello Rae Ann and All,

Gosh, since September (we did a joint North/South Soup Night at Southgate

Mall) and October was a Jessie's (very special in home event), and we didn't

have a Soup Night in August (Tijuana Bandster Bash that month), so I'm

thinking back to July! I would guess around 15 people were there. The

meeting on Monday night at 6:30 PM is at a new place that quite a few people

have never been to before, Third Place Books in Lake Forest Park Shopping

Center. However with the evenings now in the dark and rainy season I'd

guess we'll get at least that many to come on Monday. I hope so, I need a

bandster boost!

I checked the Third Place Books web site, and they do have a author speaking

that night at 7:30 but if we grab the large tables in the front of the store

it should be quiet enough for us. Many times their speakers go to a quiet

corner within the book store itself and talk and the stage is totally empty.

The speakers only talk for maybe a 1/2 hour and then go sign books a lot of

times as well.

For information on Third Place Books:

http://www.thirdplacebooks.com/NASApp/store/IndexJsp;jsessionid=CBB62388B9E1

291F5E089BB57B202957.t1

For directions click:

http://datebook.seattletimes.nwsource.com/datebook/?MIval=ae_lit_vdetail & ven

ue_code=1776

I hope this helps.

Barb F.

Bothell, WA

12/14/01 Dr. Kuri (Tijuana)

323/244/less

>

> Message: 3

> Date: Fri, 15 Nov 2002 06:49:50 -0800 (PST)

> From: RaeAnn <raeannscott@...>

> Subject: Soup Night on the 18th of Nov.

>

> How many people usually come to the north end soup

> night? My sister would like to talk to some banded

> folks.

> Thanks

> Rae Ann

>

[Guest guest]

In a message dated 1/1/2003 6:47:57 AM Eastern Standard Time,

writes:

> I want to give flowers but right now she's too

> drugged to notice. This is new to me to see my grandma as " old " !

I'm having that problem with my Mom. She's always been so youthful and on the

go. But for the last year or so she's been slowing down and very forgetful.

My Grandmother lived to be 92 and had a quadruple bi-pass at 88. She lived on

her on until the week she died. Don't worry about flowers right now. I'm sure

just knowing you're thinking about her means more than anything. Love and

peace to all, Vickie 0:)

[Guest guest]

Thank you very much for the info Duncan. You mentioned getting set up as a

distributor to access better prices. How would I go about doing this?

I appreciate the help.

Sincerely,

Jocelyne Hoare

>Message: 3

> Date: Mon, 17 May 2004 10:21:26 -0700

> From: Duncan Crow <duncancrow@...>

>Subject: Re: VCO vs Expeller pressed - Questions

>

>> I am new to coconut oil, and was wondering which of the virgin

>> coconut products they like best. (I did NOT ask this question on the

>> other forum, as I expected it would not be allowed).

>

>Jocelyn,

>

>You missed one quality in your question - definitely, the wet milled,

>centrifuged, cold-process virgin oil is much better than oil

>extracted by either the expeller or fermented method. It is preferred

>in a taste test by everyone I've tested, and 9 out of 10 on this list

>or better. I'm a western wholesale representative, and I use and

>retail " Virgin Oil de Coco Creme " from Quality First International,

>the inventor and patent holder of this method and equipment. This oil

>is sold by only a few companies, who are quick to point out the

>different process used for this oil.

>

>I also sell their 'regular' expeller pressed virgin coconut oil at a

>very good price; QFI refers to it as " virgin 2 coconut oil " . It costs

>only about $50 US per gallon delivered, about $22 per kilo (about a

>quart, 35 ounces) depending on the US dollar exchange rate. This is

>the oil sold by Mercola for example and nearly all the rest of the

>companies at a much higher price.

>>

>> I am also thinking about an expeller-pressed CO for cooking and

>> baking, but had some questions about the effects of the manufacturing

>> process on the oil. Does the steaming diminish the beneficial quality

>> of the oil, or cause a change in the likelihood of rancidity? I know

>> that in tropical regions, the oils are naturally exposed to higher

>> temperatures than in more temperate climates, but they are certainly

>> not exposed to steamlike levels.

>

>To my knowledge it has not been established that the volatiles, that

>are definitely lost due to the heating or steaming steps in the

>expeller or fermented method, have distinguishing properties such as

>health effects, so " as far as we know " we can only cite the flavour

>difference. Of course, for cooking sometimes you don't want the

>flavour anyway so you can settle for a lower grade, flavourless oil.

>

>There is indeed a rancidity issue. Virgin oil made by either the

>expeller or fermented method has detectable rancidity in just a few

>months (though you will never hear this straight answer from TT).

>Quality First International says they have to sell their virgin 2 as

>quickly as possible because there is measurable rancidity in less

>than four months from the date it is extracted. Virgin Oil De Coco

>Creme however has at least a three year shelf life due to the

>superior method.

>

>Note that QFI has nothing to gain by revealing the rancidity issue

>and I praise their integrity for doing so. They know all of these

>processed intimately and they do not hide data or science. They are

>the largest importer and wholesaler of coconut oil in North America

>and they sell far more virgin 2 and lower grades than the gourmet

>Virgin Oil de Coco-Creme.

>

>>

>> Of course, for therapeutic reasons, I understand the need for virgin

>> coconut oil, but need feedback on oil for other purposes.

>>

>> Thanks for any help you can give me.

>>

>> ~~ Jocelyne

>>

>

>They also have three or four grades below that; we would suggest one

>of those for soap making. They also have other oils, shea butter,

>waxes, palm oil etc that might interest you. Contact me Duncan Crow

>for distributor information so you can access the best price, which

>goes considerably lower than the retail price on virgin 2 I just

>quoted.

>

>regards,

>

>Duncan Crow

>http://members.shaw.ca/duncancrow/

>

>

>________________________________________________________________________

>________________________________________________________________________

>

>

>

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

>

[Guest guest]

I am very slowly getting the hang of this. I don't have a clue as to

what my soft spot is. I just know that all of a sudden my throat

thickens up and the food comes up. Now yesterday, I did ok with the

1/2 cup except in the evening where i snacked on crackers before I

could heat my dinner. I thought that they would not matter. Also had

some water. Then I was hungry so i tried to eat it all and it just

would not all go down. Please explain, does the extra food get stuck

in the esophagus? The pb was very slight, but there none the less. I

am not getting this. Should I call my surgeon about enlargement or

dislocation of the pouch? I feel fine otherwise. Up until two weeks

ago, I had no restriction. Even though I thought I was practicing good

bandster habits, i guess I was not.

Sage

On Saturday, April 16, 2005, at 03:09 AM,

wrote:

[Guest guest]

Hi all. My name is Tina. I'm not the typical heterochromia case. I have two different colored eyes but they are both brown. I was born this way. One is light brown and the other is a very dark brown...so dark that the pupil isn't very noticeable. Mine may not be a true case of heterchormia. I may just have hyperpigmentation in the darker eye. I say this because the white part of the darker eye, the slcera, has flecks of dark colors in it, while the lighter eye's sclera is clear. What I'm trying to say is that my eye color may not be a genetic thing as is the case for true heterochromia. In any event, I'm happy to join up with other unique folks who were blessed with the same eye color condiiton! heterochromia wrote: There are 2 messages in this issue.Topics in this digest:1. HelloFrom: " (Mel)" 2. Re: HelloFrom: "Jo H." ________________________________________________________________________________________________________________________________________________Message: 1 Date: Wed, 15 Feb 2006 00:12:27 -0000From: " (Mel)" Subject: HelloHi there,My name is and I am a 22 year old from Ontario Canada...I joined this group to learn about heterochromia...as long as I can remember I have had one blue eye and one green eye...but didnt know there was a name for it until I was watching CSI the other night...lol...any info you can give me will be much appreciated..thank

you.________________________________________________________________________________________________________________________________________________Message: 2 Date: Wed, 15 Feb 2006 02:44:57 -0000From: "Jo H." Subject: Re: Hello,that's exactly why I joined this group, too, because of CSI mentioning it the other day. My husband is the one with one blue eye and one brown eye with some of the blue from the other eye bleeding in. His eye colors are very subtle and not noticed by most. I thought I'd join here and read a bit more about it if I could. I looked on Google images to find some more of these beauties and there were some especially one somber looking young boy that had very gorgeous

eyes.Jo________________________________________________________________________________________________________________________________________________------------------------------------------------------------------------

[Guest guest]

Hi Tina,

My left eye is also very dark brown so that the pupil isn't noticeable. My right eye is hazel,but when I was a child it was light brown,but gradually changed.

Jeff in Ohio

Re: Hello,that's exactly why I joined this group, too, because of CSI mentioning it the other day. My husband is the one with one blue eye and one brown eye with some of the blue from the other eye bleeding in. His eye colors are very subtle and not noticed by most. I thought I'd join here and read a bit more about it if I could. I looked on Google images to find some more of these beauties and there were some especially one somber looking young boy that had very gorgeous eyes.Jo________________________________________________________________________________________________________________________________________________------------------------------------------------------------------------