Re: Lost

[Guest guest]

> Vaughn, please don't wonder. You might get lost like your

> grandmother.

> Donna

Donna,

I'm like Dan'l Boone who said, " I've never been lost, but I was confused for

three days once " .

Do you know why the Israelites wandered in the desert for 40 years?

Moses wouldn't ask for directions.

Vaughn

[Guest guest]

> Vaughn, please don't wonder. You might get lost like your

> grandmother.

> Donna

Donna,

I'm like Dan'l Boone who said, " I've never been lost, but I was confused for

three days once " .

Do you know why the Israelites wandered in the desert for 40 years?

Moses wouldn't ask for directions.

Vaughn

[Guest guest]

Hi Jodilee,

This site may give you some ideas about treating your daughter's MS:

http://tinyurl.com/grpm9

With best wishes,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

[Guest guest]

Your story truly breaks my heart. Powerless, and watching a loved one

sentenced to the living death of MS.

Prior to my optic neuritis diagnosis I was roofing houses and could

place a couple of tons of shingles onto a roof in the morning. I was

one of those little twerps zipping around on top of a steep roof

carrying an 80lb bundle on my back. Today I'm walking with two canes.

My sickness originally started with optic neuritis. Then came Rebif 4

years later. The Rebif made me measurably weaker. After explaining

my studies of taking walks on and off the Rebif and my decline in

performance while taking the Rebif, my neurologist says " I never heard

of that before...keep taking it. "

Then came Copaxone, which gave me mini exacerabtions after each

injection, I came to fear the Copaxone injections. Then came LDN.

Then came the German intravenous EAP. The EAP did provide some

benefit, then another exacerbation came along and my right hand quit

working :-(((

Now I'm switching diseases to Lyme Disease. Lyme Disease also sucks,

but, there are antibiotic treatments where someone can show improvement.

None of the Lyme tests are terribly accurate. Like MS, a Lyme Disease

diagnosis is a " clinical " diagnosis. This means an extensive history

and a thorough physical exam. FIRST hire a competent Lyme physician.

Use whatever tests the doc wants.

Currently, I'm 4-months into my Lyme diagnosis. When I first started

the antibiotics I did show some strength improvements :-) Then the

" herx " reaction (Jarisch-Herxheimer reaction) This is the bodies

response to the Lyme spirochetes dieing. The biological carnage

causes the decrease in strength. June 10th I started a different

course of antibiotics. Same thing, I got a little stronger, then the

herx reaction :-( I should pull out of this soon.

This sickness is driving my parents nuts :-((( After my MS diagnosis

one of the other church-ladies found my mother crying in the kitchen.

Due to judicious purchase of disability insurance I'm still

self-sufficient. I'm certain that my parents not having to see me

staggering about makes the sickness easier on everybody.

:-(

>

>

> Hello All,

> I sit here looking at the monitor not knowing what to say or where

to start. & nbsp; I've read the stories, thoughts, struggles etc and now

I find the need to write myself. & nbsp; My 20 year old daughter just

had her 2 year anniversary today. & nbsp; That was the first time 'ms'

was whispered in the room. & nbsp; She had optic neuritis and was

immediately sent to the er for testing. & nbsp; Now after 2 years of

steroids, rebiff, avonex and ldn she sits in my home every day in a

wheelchair. & nbsp; No feeling from her hips down. & nbsp; No one to tell

us what to do, where to turn. & nbsp; No ideas. & nbsp; No handbook. & nbsp;

No hope. & nbsp; Different diets don't help. & nbsp; It's so hard to watch

life happen around her. & nbsp; All of her friends left her. & nbsp; Her

siblings are graduating, off to college, off with significant

others. & nbsp; Again here she sits in my home. & nbsp; Alone. & nbsp;

Lost. & nbsp; Any suggestions would be greatly appreciated. & nbsp; Thank

you for listening

>

>

>

>

>

[Guest guest]

Hello Jodilee, many of us on this site have a hint of where you are, thats why

we're here. So we welcome you and hope that you might learn something from us

and we from you. I think it is helpfull to keep a diary from the beginning and

make entries when ever you want, daily, every other day, weekly whenever. It is

better than keeping everything inside. There is always hope, miracles have

happened before. Only the Master knows the plan.� ..RP

[Guest guest]

The grief and despair comes across in your words; I truly feel for

you and your daughter. I wish I had something to say that would

bring you comfort. What can we say to the parents who continue to

care for us, but THANK YOU!! Six and half years into this retched

disease Mom is still reminding me of Tysabri appointments(probably

will be forever) and the only time I see Dad cry is when he has to

describe the toll MS has taken on our family. I have always said it

is harder to be the caregiver than the patient. I tell my mom I get

the drugs and the sympathy all she gets out of the deal are anxiety

ridden feelings of helplessness. I have two children of my own and

never want imagine this kind of physical pain being theirs. They pay

the price in emotional currency.

On an extremely practical level music has been a saving grace for my

emotional stability. When there is nothing else I can do to curb the

pain of MS, I will plug my brain into music and TRY to lose myself.

Your daughter may benefit from a few new CD's. As you know,

sometimes the simplest things make the biggest difference. The NMSS

in your area may be able to set your daughter up with a peer support

counselor. There are more and more young people suffering with this

all the time. : ( There may be a support group in your area with

other young adults. Just an idea. ; )

Try, try, try not to forget about yourself. You need time for YOU!

Remember friendships past and present and call in some emotional

support. Others often will say nothing while waiting for you, not

wanting to over step bounds. Give them the go ahead to be there and

they may surprise you. And if not, you know where you stand now.

Visit the Library, go on a date, take a bubble bath, paint your toe

nails (and her's), rent a girly movie and grab a box of tissues,

anything for you. If " guilt " overrides the first couple of times,

KEEP TRYING. You need it. God speed. Jill

>

>

> Hello All,

> I sit here looking at the monitor not knowing what to say or where

to start. & nbsp; I've read the stories, thoughts, struggles etc and

now I find the need to write myself. & nbsp; My 20 year old daughter

just had her 2 year anniversary today. & nbsp; That was the first

time 'ms' was whispered in the room. & nbsp; She had optic neuritis and

was immediately sent to the er for testing. & nbsp; Now after 2 years

of steroids, rebiff, avonex and ldn she sits in my home every day in

a wheelchair. & nbsp; No feeling from her hips down. & nbsp; No one to

tell us what to do, where to turn. & nbsp; No ideas. & nbsp; No

handbook. & nbsp; No hope. & nbsp; Different diets don't help. & nbsp; It's

so hard to watch life happen around her. & nbsp; All of her friends

left her. & nbsp; Her siblings are graduating, off to college, off with

significant others. & nbsp; Again here she sits in my home. & nbsp;

Alone. & nbsp; Lost. & nbsp; Any suggestions would be greatly

appreciated. & nbsp; Thank you for listening

>

>

>

>

>

[Guest guest]

> I've read the stories, thoughts, struggles etc and now I find the

need to write myself. & nbsp; My 20 year old daughter just had her 2

year anniversary today. & nbsp;

Hi Jodilee,

I can only imagine your pain. I think that having MS myself is far

less suffering than watching one's child struggle with it. I have a

couple suggestions for you. First, you said that the diets don't

work and I'm wondering which you've tried and for how long. Your

daughter seems to have a very aggressive case that has progressed

rapidly. It also seems (just anecdotal stuff here) that the further

one has progressed, the longer it takes for diet changes to bring the

body back in balance and heal. Keep in mind that it took

McDougall ***four years*** to heal from bedridden by going gluten-

free and casein-free. I had the fortune of not progessing very far

before making radical changes, so it took mere weeks for me. But I

also want to point out that it wasn't gradual - it was literally as

though a switch was flipped overnight. I woke up one morning and

proclaimed to a co-worker " I'm back! " . lol So even if it doesn't

seem like a diet is working, I would stick with it. It certainly

can't hurt.

I have also had great success with acupuncture. Like diet, it's not

a quick fix, although I've heard stories of great progess in a single

session. One thing I've read since dealing with my 2nd bout of optic

neuritis is that we don't do acupuncture nearly often enough here in

America. In China, it's typically performed every day for 10-14 days

(depending on the condition), then a break, and another round of 10-

14 days. Of course, it only costs $3 a session there. lol So, if

it's something your daughter is going to try I would encourage going

as often as possible at first. Within a couple months, I was feeling

much stronger, no tingling/numbness, sleeping better, etc.

HTH!

Crystal

[Guest guest]

Jodilee,

My sympathy(ies) to you and to your daughter.

If you would like the only really " likely " answer, please write me directly

at drthreex@...

You may be pleased at what I have researched, and already accomplished with

MS.

Thanks, and God Bless,

Dr. Dan

On Mon, Jun 16, 2008 at 7:47 PM, Jodilee

wrote:

>

> Hello All,

> I sit here looking at the monitor not knowing what to say or where to

> start. & nbsp; I've read the stories, thoughts, struggles etc and now I find

> the need to write myself. & nbsp; My 20 year old daughter just had her 2 year

> anniversary today. & nbsp; That was the first time 'ms' was whispered in the

> room. & nbsp; She had optic neuritis and was immediately sent to the er for

> testing. & nbsp; Now after 2 years of steroids, rebiff, avonex and ldn she

> sits in my home every day in a wheelchair. & nbsp; No feeling from her hips

> down. & nbsp; No one to tell us what to do, where to turn. & nbsp; No

> ideas. & nbsp; No handbook. & nbsp; No hope. & nbsp; Different diets don't

> help. & nbsp; It's so hard to watch life happen around her. & nbsp; All of her

> friends left her. & nbsp; Her siblings are graduating, off to college, off

> with significant others. & nbsp; Again here she sits in my home. & nbsp;

> Alone. & nbsp; Lost. & nbsp; Any suggestions would be greatly appreciated. & nbsp;

> Thank you for listening

>

>

[Guest guest]

Dr. Dan,

I think we would all like to know if you don't mind?

Thanks.

In a message dated 6/17/2008 12:45:31 P.M. Pacific Daylight Time,

enemaguy@... writes:

Jodilee,

My sympathy(ies) to you and to your daughter.

If you would like the only really " likely " answer, please write me directly

at _drthreex@..._ (mailto:drthreex@...)

You may be pleased at what I have researched, and already accomplished with

MS.

Thanks, and God Bless,

Dr. Dan

On Mon, Jun 16, 2008 at 7:47 PM, Jodilee <_jodilees_2001@jodilees__

(mailto:jodilees_2001@...) >

wrote:

>

> Hello All,

> I sit here looking at the monitor not knowing what to say or where to

> start. & nbsp; I've read the stories, thoughts, struggles etc and now I find

> the need to write myself. & nbsp; My 20 year old daughter just had her 2 year

> anniversary today. & nbsp; That was the first time 'ms' was whispered in the

> room. & nbsp; She had optic neuritis and was immediately sent to the er for

> testing. & nbsp; Now after 2 years of steroids, rebiff, avonex and ldn she

> sits in my home every day in a wheelchair. & <WBR>nbsp; No feeling from her

> down. & nbsp; No one to tell us what to do, where to turn. & nbsp; No

> ideas. & nbsp; No handbook. & nbsp; No hope. & nbsp; Different diets don't

> help. & nbsp; It's so hard to watch life happen around her. & nbsp; All of her

> friends left her. & nbsp; Her siblings are graduating, off to college, off

> with significant others. & nbsp; Again here she sits in my home. & nbsp;

> Alone. & nbsp; Lost. & nbsp; Any suggestions would be greatly appr

eciated. & nbsp;

> Thank you for listening

>

> [Non-text portions of this message have been removed]

>

>

>

[Non-text portions of this message have been removed]

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Dr. Dan

A quick Google search of your email address tells me that you also

have interesting cures for Asthma, Severe Menstrual Cramps and Cancer

(see below)

Might I encourage anyone who has been recently diagnosed with MS (or

indeed anything) to be extra vigilant when people make extraordinary

claims regarding treatments and cures Particularly when entering into

private correspondence.

8<-------------------------------------

As a long time health researcher, I am concluding that excess acidity

is a primary cause of asthma -- not attributed to any other specific

cause. If you are interested, please contact me.

Thanks,

Dr.l

drthreex@...

8<-------------------------------------

Actually, there is a reliable, and fairly easy way to get relief from

severe menstrual cramps. It's non-toxic, and inexpensive, and easy to

use.

Any Members needing information may email me at drthreex!gmail.com.

Thanks, and God Bless,

drthreex@...

8<-------------------------------------

The reason that their is so much emphasis on enemas in this message

board is simply that an Alkaline enema is about the best thing for

cancer " control and prevention, " and then, for cancer " fixin' " if and

when that become necessary.

drthreex@...

8<-------------------------------------

Best Wishes

DanW

[Guest guest]

Dear Mr. Wade,

You might believe that you are performing a valuable service to others by

heightening the " vigilance " of anyone " recently diagnosed with MS (or indeed

anything) when people make extraordinary claims regarding treatments and

crues Particularly when entering into private correspondence. " but you could

be wrong to do so. The medical community is so fraught with " No Hope "

prognoses for conditions such as MS, or they can " stall " good actions with

warnings like yours, without ever admitting their own frailities. Admitted

statements from practicing physicians reveal that only about 1 out of 7

really even " know " what they are doing, other than passing on the

" pill-du-jour, " left by their detail man (or woman) the week before YOU

visit them. In addition, about 46% of physicians have publicly admitted to

using and abusing their own prescribing powers to give themselves drugs not

" ordinarily needed. " On top of all THAT, it is well known that Iatrogenic

Disease is now the single-biggest cause of death in America, today --

meaning that more people die each year from illnesses they didn't even

" have " before they entered the American mainstream health-care

(disease-care, really) system.

And YOU propose to tell them to be wary of ME? ? ? ? ?

Where is your public service warning for these ill folks to be WARY OF THEIR

PHYSICIAN?

Oh yes, I KNOW, everybody will tell you, and then tell ME, that " I have a

Specialist, WHO IS REALLY THE BEST THERE IS IN THIS FIELD. " Then, they die

anyway. NO ONE tells me, " You know, Dr. Dan, I deliberately went out to find

the crummiest, least knowledgeable half-as_ _d medical person I could find,

and I am using him/her as my guide through this life threatening illness. "

One question, Mr. Wade, what is YOUR standing which justifies your scaring

away innocent victims of medical care from at least " considering "

alternatives? WE KNOW that the pharmaceutical companies like to sell pills,

and that they like to use the physician complement to help them do so. We

know this, because we KNOW that the major job of any and every corporation

is to enhance profits for the benefits of their stockholders. My own sister

has said, " Your Doctor doesn't care whether you're sick or well, he/she ONLY

cares if you pay the bill. "

I think it's about the same with the phramaceutical companies. They don't

care if you are sick or well, they only care if you BUY their medicines.

How widely studied are you? Or are you merely " suspicious, " or worse, are

YOU a " pawn " of the medical system?

Let's not throw innuendo at each other, though. Let's meet in the open on

the battlefield of health, disease, and death and dying. I'll show you my

cards, you show me your cards.

Let's be open and above board, and see who can support what they promulgate.

Fair enough?

Dr. Dan Kukulka, a PhD researcher, not a medical physician and not

attempting to practice medicine, because I don't diagnose, prescribe, treat,

cure, or heal anybody. Everybody who reads what I write is advised to make

up their own minds about the sensibilities or lack thereof of wondering why

" conventional " treatmens DON'T cure MS patients. Huh? Huh? Huh?

If you feel you need or can benefit from medical advice, seek out the health

professional of your choosing and pay no attention to anything " I " say.

Thank you and God Bless,

Dr. Dan Kukulka, living, working, and saving lives in South Carolina

Do you want to be next?

NOT a medical physician, by God! Physicians have a hard job to do and I

applaud their dedication. IF you NEED a physician, find the best one you

can, by God !

[Guest guest]

What a misguided and unwarranted attack on Dan Wade. How dare you.

In an era where 12 year olds are running scams and falsely collecting

funds for MS and pocketing the money, you attack someone who reminds

us to be careful? I wrote to you a while ago. You have never

answered. Others have written merely requesting your background and

you did not have the courtesy of providing it. You even had the

arrogance to state " Let's be open and above board, and see who can

support what they promulgate. Fair enough? " and still did not

provide any background on yourself' only attacked someone who had the

courage to ask that people be careful. Drthreex@..., an email

you provide, is an email listed belonging to someone named le.

This disease is hard enough to deal with without having to deal with

your arrogance. I myself do not have a degree in a health field but

I have a background in negotiation and can recognize an intimidation

tactic when I see one. Once again, please provide the information on

where you got your Ph.D. and in what field....and apologize to Dan

Wade.

I encourage everyone to run a google search on: Dan Kukulka South

Carolina. Researchers of any type need to publish papers in order to

get funding unless they are merely researching on the internet.

I encourage everyone to ALWAY CHECK THEIR SOURCES especially if

anyone requests money or who claims to have a cure.

I encourage the moderators of this site to not approve Mr. Kukulha's

emails unless he learns how to behave and stops making vague claims

without backing them up.

Lydia

>

> Dear Mr. Wade,

>

> You might believe that you are performing a valuable service

[Guest guest]

Lydia and everyone.

..

Dan Wade was correct in suggesting everyone here research and make their own

informed decisions based on their own research. This is a large group, and

none of us knows the accuracy or intentions of any other person here. Most

of us are here to help each other, but sometimes trolls slip through.

Trolls enjoy causing conflict within close knit egroups. In fact, a troll's

sole purpose is to cause arguments within the group.

Trolls feed of the negativity they create.

Trolls like to start controversial topics, or spew inaccurate " facts " and

then sit back and watch people argue.

The less attention a troll receives from the group, the faster he/she will

back off and stop trying to cause problems.

The person involved is now on moderated. And each one of us is capable or

researching any and all advice we get in regards to our health

Let's not give it anymore attention.

Thanks,

Yvette

Moderator

[Guest guest]

yes there are " TROLLS " out there spewing inaccuracies (LIES?) But it is up to us

to see these lies and recognize them for that and do our own research and trust

that our doctors and caregivers will help us to see these lies as nothing more

than that... we are all in this together and must stay that way and help each

other.

[Guest guest]

 it is up to us (MS or whatever) to see these charlatans for who they really are

and steer away from them... I constantly get email messages that are found out

to be lies but it is up to me to research and come to  My own conclusion --  I

find myself " running " away from anybody who tells me " not " to do something on

their own say!

[Guest guest]

> But it is up to us to see these lies and recognize them for that and

do our own research and trust that our doctors and caregivers will

help us to see these lies as nothing more than that

True, but I'm not sure I'd include doctors (MDs) in the group

of " Recognizer of Truth " . Hey, most of them are victims

themselves...of the pharm. reps. If I put any stock at all in what my

MD had to say, I'd be on a CRAB drug, corticosteroids, eating whatever

the hell I wanted, and generally feeling like crap!

Crystal

[Guest guest]

I don't trust those doctors either! They didn't all graduate at the

top of their class. Some are better than others. Only YOU are

responsible for what you decide to do. You live with the consequences,

the doctor doesn't walk in your shoes. I don't walk in my own! Most

doctors only spend 30 minutes with you and then on to the next in line.

I doubt that many give additional thought to the situation that you are

in. Out of sight, out of mind. Of course, that isn't always the case.

>

> True, but I'm not sure I'd include doctors (MDs) in the group

> of " Recognizer of Truth " . Crystal

>