introducing myself

December 27, 2005

In a message dated 12/27/2005 1:47:42 PM Eastern Standard Time,

netsuke@... writes:

<And, I recommend against providing information verbally..... do

everything in writing>

There is time later on to change things. This on-the-phone biz is

just to get you started and also establish contact between the

individual and the local Soc Sec office. They usually are very

helpful on an individual basis.

Is that what you were thinking of, Marilyn, or were you thinking

of " saying things on the phone " in the current political climate we

have?

Sometimes verbal stuff can be misinterpreted and then that becomes part of

the record. Do it right and completely the first time, in writing.

Understand also how the information may be interpreted.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

December 27, 2005

as far as disability goes; two things...first join another group

called disinissues; I may have spelled it wrong but its something close to that;

they are a group that deals with hard to define illnesses like ours and getting

social security for it. Second is to do a ton of research on the best ways

to get it. People with fibro are denied all the time cause it is hard to

prove.

If it were me I would find a good lawyer (by calling support group leaders

to find an honest & good one) and use him/her. they only take 25% and let you

pay it only if you win the case.

Joe

December 27, 2005

Hi Jennie,

I have a long story but here's the short version.

There is a place called the firbromyalgia and fatigue center that claim to

have cured 99% of people. And those few that don't get fixed, do with more time,

up to a year. They now have 10 centers in the US.

I'll guess sense there is no definitive test that proves a person has this,

and so there is none to proof they are fixed, other doctors have told me there

is no provin fix.

They recommended I take 8 supplements. It seems proboost is the one that is

doing me the most good.

I tryed one a day for a month and got some help, so I tryed the recommend 3 a

day for 6 weeks.

(I do much worst when its cold and the doors are windows are closed. On the

worst days I would do a few extra proboost but I guess I ended up taking to much

because after 5 weeks I had to stop. I will start again in a few days, and this

time only take 3 a day.

I am doing a lot better, but until I'm 100% and able to work, its not going to

be enough.

A good way to get lots of information is to look at the old post.

It seems a few in this group have tryed it with mixed results.

If you know of a simple problem, like for me when I drank orange juice I get a

blister, then its easy to see the proboost working.

(I'll guess a lot of the problem is most people don't believe its an

immune-system problem, but I do, because after taking immune suppressants bye

mistake I went form 10-30% bad to 70-90% bad.)

Good luck,

Ron

http://www.fibroandfatigue.com/index.php

Here are the other 8 supplements the center recommend to me. Others have said

they recommend similar ones but not these exact same ones.

CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably vitamins),

ProBoost, Enzyme Rx, Rest & Restore. (Here is one place to get them, there are

many others.)

https://www.immunesupport.com/shop/

The thymus gland, which is the centerpiece of the immune system, gradually

decreases in size and functionality beginning at age three. By age 40, the

thymus gland is no longer capable of producing sufficient levels of a critical

protein, thymic Protein A, needed to program T-cells to jump-start an immune

response. http://www.proboostmed.com/faq.html#1

Message: 1

Date: Mon, 26 Dec 2005 23:20:53 -0000

From: " luvmyfirefly " <luvmyfirefly@...>

Subject: Introducing myself

Hi all-

I'm Jennie. I am a 45 year old mother to a 2 1/2 year

old. She is a

wonderful girl, but unfortunately the

pregnancy/Csection/newborn phase

seems to have been the trigger for my fibromyalgia.

I have been unable to work for more than a year (at a

job I loved -

film preservationist) and I am beginning the

disability application

process. It just became clear to me that I didn't

have the energy for

the job and my daughter and I had to make a choice,

and now I'm very

happy with the decision. Getting to spend more time

with Priya is a

joy, though I wish I had more energy to play with her

more

rambunctiously! And I wish I had the energy to

maintain the house

properly at the same time!

I would appreciate any pointers on the disability

process. I am

meeting with my boss on Wednesday to submit the

application to my

employer (the federal government) and then I'll apply

with Social

Security.

I am also looking into the guaifenesin protocol. Has

anyone has

success with it? How do you eliminate all the

salicylates?

Thanks for any info you can provide and I look forward

to getting to

know the people here!

Jennie

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

Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

December 27, 2005

Jennie, About the SS app, give them everything you've got...Medical reports,

journals, diarys...anything that documents/illustrates your functioning. A

neuropsychological exam would be a great help. This is a tool that documents

functioning/impairment of cognitive abilities. Do it right the FIRST time of the

result me be appeals and attorneys. Good luck, Mel

December 27, 2005

> I am also looking into the guaifenesin protocol. Has anyone has

> success with it? How do you eliminate all the salicylates?

>

Hi Jennie,

I have some success with guaifenesin, but it seems not so easy to handle

continuously for a long time. I have more energy, less brain fog and feel a

little better fit to everyday life when I am on it. But I had to stop after

6 weeks because I had pain in my kidneys (could have been stones). Now that

my kidneys are better, I can take it again.

For the salicylates, I avoid mint and aspirin, I don't really pay attention

if I eat any or not, it seems to work however. There is something you will

notice: hypoglycemia. Be prepared to face it. I happened to have

hypoglycemic vertigo in the street, I could have fallen (better know it

before!)

Sylvie

December 27, 2005

Jennie, I did all that Mel suggests and still failed. I have records

dating back 25 years. People who had either been the route or else

knew someone who had told me that the best course is to get a Soc Sec

attorney right off the bat and not waste time, as so high a percentage

are rejected as a matter of course. A Soc Sec attorney will take a

percentage of the eventual award for back pay, but I guess that's all?

Luckily in Illinois, the first interview is now held by telephone.

This helps if you are functioning so badly you cannot even figure out

the forms, which was my case the very first time I dealt with this.

Which state are you in?

Champaign IL

>

> Jennie, About the SS app, give them everything you've got...Medical

reports, journals, diarys...anything that documents/illustrates your

functioning. A neuropsychological exam would be a great help. This is

a tool that documents functioning/impairment of cognitive abilities.

Do it right the FIRST time of the result me be appeals and attorneys.

Good luck, Mel

>

December 27, 2005

<And, I recommend against providing information verbally..... do

everything in writing>

There is time later on to change things. This on-the-phone biz is

just to get you started and also establish contact between the

individual and the local Soc Sec office. They usually are very

helpful on an individual basis.

Is that what you were thinking of, Marilyn, or were you thinking

of " saying things on the phone " in the current political climate we

have?

>

> In a message dated 12/27/2005 1:19:29 PM Eastern Standard Time,

> netsuke@a... writes:

>

> Luckily in Illinois, the first interview is now held by telephone.

> This helps if you are functioning so badly you cannot even figure

out

> the forms, which was my case the very first time I dealt with

this.

> Which state are you in?

>

> .

> And, I recommend against providing information verbally..... do

everything

> in writing and make sure you have at least two copies. That way,

there is no

> question as to what the issues are.

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

December 27, 2005

Well, rightly or wrongly interpreted, in IL now, you MUST do it by

phone first, I'm pretty sure (although I don't know what happens if

you have no phone and need to file). In fact, they did get one

thing of mine incorrectly, but I changed it when the initial

paperwork came. Whatever you say on the phone is not permanent. You

can change it when the paperwork gets to you.

>

> In a message dated 12/27/2005 1:47:42 PM Eastern Standard Time,

> netsuke@a... writes:

>

> <And, I recommend against providing information verbally..... do

> everything in writing>

>

> There is time later on to change things. This on-the-phone biz is

> just to get you started and also establish contact between the

> individual and the local Soc Sec office. They usually are very

> helpful on an individual basis.

>

> Is that what you were thinking of, Marilyn, or were you thinking

> of " saying things on the phone " in the current political climate

we

> have?

>

> Sometimes verbal stuff can be misinterpreted and then that becomes

part of

> the record. Do it right and completely the first time, in

writing.

> Understand also how the information may be interpreted.

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

December 27, 2005

I am in Ohio. Boy, this process would be daunting even if I didn't

suffer from Fibro fog!

> >

> > Jennie, About the SS app, give them everything you've got...Medical

> reports, journals, diarys...anything that documents/illustrates your

> functioning. A neuropsychological exam would be a great help. This is

> a tool that documents functioning/impairment of cognitive abilities.

> Do it right the FIRST time of the result me be appeals and attorneys.

> Good luck, Mel

> >

December 27, 2005

That's the first " filter, " pragmatically speaking. How they keep

applications reduced. However, I found that if I could even get to

the first hurdle, the individual people are very good with helping

you out.

I have a friend in NM who hired a lawyer first, but then was so good

with documenting every single thing in terms of her FUNCTIONALITY

that she received her entire compensation, and the hired lawyer took

nothing. It's important to explain everything in terms of your

FUNCTIONALITY.

> > >

> > > Jennie, About the SS app, give them everything you've

got...Medical

> > reports, journals, diarys...anything that documents/illustrates

your

> > functioning. A neuropsychological exam would be a great help.

This is

> > a tool that documents functioning/impairment of cognitive

abilities.

> > Do it right the FIRST time of the result me be appeals and

attorneys.

> > Good luck, Mel

> > >

December 28, 2005

On Dec 27, 2005, at 8:32 AM, Ron R wrote:

> Hi Jennie,

>

> I have a long story but here's the short version.

>

> There is a place called the firbromyalgia and fatigue center that

> claim to have cured 99% of people. And those few that don't get

> fixed, do with more time, up to a year. They now have 10 centers in

> the US.

As an FFC patient, I'll chime in here. Their record is impressive: I

think the actual number is around 94%. However, this number doesn't

represent a total cure, but rather of people who see " significant

improvement " in their condition. Their website is

<www.fibroandfatigue.com>,

> I'll guess sense there is no definitive test that proves a person

> has this, and so there is none to proof they are fixed, other

> doctors have told me there is no provin fix.

I'm not sure my FFC doctor even believes CFS exists, frankly. He said

some things in our last meeting that suggest that he thinks it's just

a grab bag of misdiagnosed conditions (low thyroid, endocrine

problems, out-of-whack energy processing, etc.) that have somehow

been piled in together under one tent -- mainly so that other doctors

can wash their hands of their failures to properly identify and cure

them. (This may leave some of you aghast -- but I can see where, if

you look at it in the right light, he might not be totally wrong

about this.)

Or maybe I just caught him on a bad day.

No matter: the things he's done have added probably 25% to my overall

health level since last summer; and as Ron notes, I continue to get

better as the months go by.

> They recommended I take 8 supplements. It seems proboost is the one

> that is doing me the most good.

> I tryed one a day for a month and got some help, so I tryed the

> recommend 3 a day for 6 weeks.

> (I do much worst when its cold and the doors are windows are

> closed. On the worst days I would do a few extra proboost but I

> guess I ended up taking to much because after 5 weeks I had to

> stop. I will start again in a few days, and this time only take 3 a

> day.

Wow. That's a LOT of ProBoost!

I started off with two a day, then backed off to one. I'm getting

ready to taper down again to one every other day. I know the stuff is

working, because my parents came up to Vancouver to have Christmas

with us. Starting around the 21st, my husband got sick with the flu,

followed by one kid, then the other one, and then my stepdad (who

missed Christmas, and just got out of bed today). Through it all,

though, I'm standing tall!

I did wake up on the 24th feeling like I'd been run over by a truck

-- so I upped the PB to 2x/day for a couple days, and the flu never

took hold.

> I am doing a lot better, but until I'm 100% and able to work, its

> not going to be enough.

I'm at about 85%, and getting ready to go back to school to finish a

masters. FFC gave me the margin that made that attempt possible. As

far as I'm concerned, every day I'm no longer living at the 25-30%

level is something to be grateful for. Being this well is something I

never expected -- and therefore, it is way more than enough.

> Here are the other 8 supplements the center recommend to me.

> Others have said they recommend similar ones but not these exact

> same ones.

> CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably

> vitamins), ProBoost, Enzyme Rx, Rest & Restore. (Here is one place

> to get them, there are many others.)

> https://www.immunesupport.com/shop/

Thanks for the link; I'll check it out.

They gave me Enada, Mirac, ProBoost, and Diaxinol, along with The

Shot (did you get The Shot?). That's the B12/glutathione/AMP

cocktail. I get it twice a week; some people get it once, others as

much as three times. All on its own, it was worth the price of

admission, AFAIC.

Sara

June 18, 2006

Oh I know where you are coming from! My son was well (not vaxed) for his whole

life then got (what I consider to be) really ill - and it made me question

everything I thought that I believed about vaccines! In fact, I am still

questioning it. I am trying to arm myself with as much info as possible because

once you vax, you can't undo it, but you can always decide to do it if that's

what you feel is best in the end. But I totally know what you mean, my views

changed SO much after he was sick, it is so hard to see your baby like that. He

also had an unnamed illness and we never figured out what it was but I do not

want to go through that again! Anyway, welcome! And goodluck with the bfing

next time! You can find support for that here too if you find that you need it

when the time comes - there is also an off topic list. The people here are

great!

) ~ http://www.thelucastribe.com

~ KUSTOMIZED KIDS ~ http://www.cafepress.com/kustomizedkids

Featuring Personalized Baby & Children's Clothing + Natural

Parenting/Breastfeeding Advocacy Products

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http://rachellucas6.livejournal.com

introducing myself

hello, i'm new.

here's a little bit about me. i've been married for 2 1/2 years. we

have a 15-month-old son, isaiah, and another on the way, due in

december. i'm a student midwife and also studying various

complementary disciplines, such as lactation consulting, massage

therapy, holistic nutrition, and herbalism. we're very focused on

conscious parenting. we've adopted as many of the attachment

parenting ideals as we could, considering that i had major issues with

breastfeeding. hopefully that problem will be resolved with the next

one. we're planning a homebirth.

we are not uninformed about the vaccination issue, but we feel like

it's hard to find unbiased information and we feel very confused by a

lot of the information we've received. i was bullied into the first

set of vaccinations for my son and since have not returned to that

pediatrician and my son has received no further vaccinations (or

checkups, for that matter, since we cannot find a doctor who is

sympathetic to our lifestyle). our main objections to vaccinations

fall under the headings of issues with manufacture & trade, and

contents. we also believe so strongly in healthy, natural family

living, with specific emphases on a good diet (organic vegan) and

exercise, and vaccinations don't seem to fall under that ideal in a

reasonable fashion. but as our son gets older the vaccination issue

comes up more frequently and we find it difficult to explain our

reasoning -- " intuition " is not considered a very good reason to forgo

what most people consider an absolutely essential component of good

health. we live in utah and we've found next to no support from

family, friends, or doctors on most issues we consider important.

i found this list by just looking up " vaccinations " under

groups. he's had an undefined illness in the last week that has sent

us scurrying to the books to find out if it's something that could

have been prevented by a vaccinations. it isn't, but it really made

us doubt ourselves to see him so sick and wondering for a time if it

was something we could have prevented. we really want to create a

definitive decision and belief one way or the other about

vaccinations.

thanks,

chandelle' bates

--

see of pictures of isaiah at www.futurerevolutionary.blogspot.com.

see more pictures at www.namesanddatesandtimes.blogspot.com.

June 18, 2006

Welcome, Chandelle' ! You've come to the right place for information and

support.

Kay

introducing myself

>> i found this list by just looking up " vaccinations " under

> groups.

we really want to create a

> definitive decision and belief one way or the other about

> vaccinations.

> chandelle' bates

June 19, 2006

Chandelle,

Welcome to the group!

I hope you'll find a wealth of info on here. It is indeed hard to find

unbiased information because everybody, me included, I suppose, has some kind of

agenda.

I did want to gently warn you about blaming yourself if your child does get a

disease that is " vaccine preventable " . Please remember that just because you

choose not to vaccinate does not mean that your child won't get sick. All the

great diets and healthy living will do wonders to keep his immune system going

strong, but we all still get sick - fact of life. I just worry that you might

beat yourself up unnecessarily if you do find yourself facing a sickness one day

and hope that you won't.

Funny anecdote that relates to this just happened today. My oldest son cut

his arm on a fence while playing tennis (jumping up to catch a ball - goofing

around). He played a while with it bleeding and then when he came home we got

it all washed up, put peroxide on it and called it done. (I do wish that we had

cleaned it right away.)

But he looked up at me and said, " It's OK, right, Mom? Cuz I've had my

tetanus shots. " Evidently somebody in the class must have mentioned it. I said

that yes, in fact, you did have your tetanus shots but I would not have been

worried if you had not since I'm not totally convinced that the shots would

prevent the disease. The wound was bleeding and that is a good sign. But if it

had been my youngest daughter, who is only partly vaxed? I hope that I would

react in the same manner.

So.... just trying to say that your child will get sick and it might or might

not be an illness on the list of vaccines to get - but it all depends on whether

or not you believe that the vaccines work or not.

Sheri's web pages have a ton of info on this.

: )

Sheri B. (not to be confused with the head honcho, Sheri N.)

earthmother <earthmother213@...> wrote: