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HI :

Steve still has OCD but it is very manageable and at a sub-clinical level.

He controls it with the CBT techniques, in particular exposure and response

prevention.

Unfortunately for him he has a couple of comorbidities, in particular major

depressive disorder, which seems to require that he keep on an SSRI for

antidepressant purposes. He managed to titrate his Paxil down to 13.3 mg

but then found he had to up it to 15 and then 20 mg to keep the MDD at bay.

The dosage of 20 mg of Paxil for him has never really affected his OCD

symptoms. He had to be on at least 60 mg to get a response for OCD.

Luckily it works quite nicely for the MDD though.

In his case he has a family history on both sides of MDD and it seems that

he has this either as another primary diagnosis or even that he had MDD

before OCD and having MDD increased his vulnerability to developing OCD.

If he did not have the MDD I think he would be coping with OCD med-free.

In fact his psychiatrist has told him (and us) that he may in future not

need any meds for the MDD. Right now when puberty is active we are

sticking with the Paxil.

Good luck with Joe coming off his meds. I have spoken to several

knowledgeable OCD docs who have treated many kids who are now doing well

living med-free, after all CBT only is the first line treatment for

children with mild or moderate OCD. Take care, aloha, Kathy (H)

kathyh@...

At 09:05 AM 01/09/2000 -0600, you wrote:

From: " Ron and Simurdiak " <jax@...>

Kathy H. - I remember your talking about how your son used to be on a lot

more medication than he is currently taking for OCD. I have been hopeful

that this summer we might find that same success with Joe. Question - If

Steve is still quite symptomatic, are you finding that you can still stay

at this low dose? I'm wondering if anyone has been successful with lowering

or coming off meds.

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Daer Patti:

Your symptoms are multi-factorial, meaning that many conditions exist

together.

I constsntly hear of people having their thyroid destroyed...which kind of

closes the door on any rational approach, unless some cells have managed to

maintain activity. In that instance, sometimes a north pole field of a

magnet may induce greater growth of the thyroid tissues when a product

Thyrodine could bring back some form of normal function, probably in

conjunction with natural progesterone.

Your symptoms also suggest intestinal toxicity, low blood sugar and most

likely estrogen dominance.

You may wish to consider consulting with a naturopathic doctor who could

investigate all these potential problems. I don't consider blood tests for

thyroid function to have any validity whatever. And dependence on synthetic

hormones or pig derived leave much to be desired.

In your case, pig [Armour} may be your best bet, until your thyroid could be

assessed for regenerative possibilities by a competent naturopath.

best wishes,

Earl

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Be sure and drink as much water as you can that will help with the side

effects and get ready for a bumpy ride some days can be good and others

really bad so you really appreciate the good days on this treatment when you

get them. Hang in there and good luck.

Winne

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Dear Jessie,

Welcome to the List! My name is , and I was diagnosed with HCV on

10/13/98. I failed Intron A treatment and went off of it in Nov. I'm

currently awaiting my Genotype result. I will more then likely go on the

Combo even if I am 1a. Those headaches are a killer! I was taking so much

Ibuprofin it was ridiculous. Not to mention hard on my liver. Now, I've

learned to live with them. I don't get as many, now that I'm off treatment,

but every once in awhile I get hit with a major one. Do you live in Chino,

CA? I noticed your email address and was just curious. I live in San Diego.

Prior to that I lived in Whittier. Good luck to you.

Love,

Bren

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  • 2 weeks later...

DTT=discrete trail training

NET=natural environment training

[ ] (unknown)

From: " TERESA WATERS " <tlwaters@...>

I DON'T MEAN TO SOUND STUPID, BUT WHAT DOES DTT, ANDNET STAND FOR? I'M NEW

ON THE LIST, AND I'M NOT UP ON THE LINGO.

TERESA

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Please click above to support our sponsor

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Matty,

Yep, I do. Especially, when my blood sugar level gets

too low, or I don't take my meds. If both happen than

it's time for that person to run and hide and get out

of my way until I've cooled off, otherwise they are

likely to get to see me get mad and take it on them

verbally.

Mona

--- Matty O'Shea <mattyoshea@...> wrote:

> Anyone have trouble with inexplicable anger? I seem

> to be overly angry at people for no reason. Seems

> to

> be connected with when I don't feel well (often).

> But

> am so used to being in pain, I don't always see a

> connection. Matty

> __________________________________________________

>

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  • 3 weeks later...

I had my mercury fillings removed several years ago due to an episode of

hair loss. It stopped the hair loss (at the time, anyway) and I am

convinced that there is a connection between my fillings and my

hypothyroidism.

If anyone knows how to clear up the aftereffects of mercury poisoning,

please post.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

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Very interesting. My mother is going to undergo this amalgam removal soon

for similar health reasons - her doctor recommended it.

Sandy

>From: ltldab1@...

>

>Thought you folks might enjoy this post, and maybe find a possible answer

>to our chronic illness problems

>

>On Wed, 9 Feb 2000 15:58:26 EST LmcCoc@... writes:

>> Hi ...YAY!!!! You are getting that junk out of your mouth!!!

>> YAY!!! I

>> felt so much better after I did...I had it all done at one

>> time...there's

>> been some controversy or questions, i should say, about having it

>> done that

>> way but I think it was the best for me...anyway, GOOD LUCK! with it

>> and let

>> us all know how it goes and how you're feeling...here's a copy of my

>>

>> story....

>>

>> Subj: My story: Mercury vs. Multiple Sclerosis

>> Date: 2/3/00

>> LISTSERV@...

>>

>> Hello all,

>>

>> Now that I have acces to be able to post...Here's a summary of my

>> story:

>>

>> In 1982 I, suddenly had a bad pain in my left eye and went blind in

>> that eye;

>> the opthalmologist (graduate of s Hopkins) diagnosed it as

>> retrobuldar

>> neuritis. He told me it could be Multple Sclerosis. I rejected that

>> diagnosis. Steroids were my only option of treatment, which I also

>> rejected.

>> After approx. 2 months of complete blindness, in that eye, pain had

>> subsided

>> as the inflammation subsided, but nerve damage was not correctable

>> (so they

>> said) After using visualization techniques, it started to clear up.

>> (I read

>> many books on these techniques, and other books, like Norman

>> Cousins,

>> " Anatomy of an Illness. " ) The doctors were amazed that I gained

>> sight back.

>> (My theory was, if my brain could tell my hand, for instance, to

>> pick

>> something up, and it would respond, then why couldn't my brain tell

>> my body,

>> internally, to do things, as well. So, I used visualization

>> techniques to

>> tell my brain to send things to blast away the scarred tissue on my

>> optic

>> nerve, so the electrical impulses which allowed me to see, could get

>>

>> transmitted down the nerve, once more. This did indeed work and

>> although I

>> doubt I will ever get full vision back in that eye (I don't do those

>>

>> techniques anymore) I can see out of my left eye, although it is

>> like looking

>> through a screen, there are holes in my vision field, and colors

>> don't look

>> the same anymore.

>>

>> The following year, the double vision abruptly interrupted my life

>> and spinal

>> taps, MRI's, and a barrage of nuerological tests " confirmed " the

>> diagnosis of

>> MS. This time I endured the steroids (and the side effects.) The

>> spinal fluid

>> did not show MS, but the " confirmation " was made by the double

>> vision and the

>> plaque or scarring on my brain shown by the MRI's. The steroids, it

>> is said,

>> do not work for everyone, but I could see the two separate images

>> gradually

>> coming together as one over a period of 3 months, so the doctors

>> claimed I

>> was steroid sensitive and so they did indeed work for me.

>> Next year, my balance was affected and rotary nystgmus (eyes move on

>> their

>> own and shake constantly) set in. Again, steroids, visualization (my

>> idea

>> again, doctors, of course, poo-poo'd that idea) and 2 months of time

>> made it

>> go away.

>> Through the next few years, I endured depression (attributed to the

>> diagnosis) fatique, blurred vision, nervousness, anxiety, weakness

>> in my

>> limbs, tingling sensations, burning sensations and various pain.

>> (All

>> attributed to the MS, but I rejected steroid treatment and opted for

>> just my

>> own method of treatment: distraction in the form of reckless

>> behavior, ie,

>> sky diving, impulsive behavior, drinking to excess, manic behavior,

>> etc.

>> It was around that time, 60 Minutes reported the amalgam/mercury

>> story. I had

>> 11 large amalgam fillings. My cousin was a dentist and removed all

>> of them,

>> at one time, and replaced them with gold (now I wish I had opted for

>>

>> composite material, but the gold doesn't seem to cause me all that

>> many

>> problems). Within 10 days, I had NO more symptoms of MS! Very few

>> people,

>> including my doctors and my cousin, the dentist, believed me. I

>> didn't care,

>> I KNEW it was from the mercury!! (Thank God for that TV report!)

>> MS is said to exacerbate with stress. Well, I have endured much

>> stress since

>> having my fillings replaced: the birth of my son too early, my

>> husband of 15

>> years being suddenly and tragically decapitated in a car accident,

>> losing all

>> my money and assets to a con artist, to name a few. These stressors

>> did not

>> bring on any symptoms, as surely would have if the diagnosis of MS

>> were

>> correct. However, the medical profession will not see it's way clear

>> to

>> UNdiagnose the MS; making health insurance exhorbitant, for one

>> thing.

>> This has been a long, but educational trek. I HAVE NO DOUBT I was

>> mercury

>> poisoned and still endure some after effects. I did not do any

>> chelation, I

>> didn't know about it back then.

>> I feel extremely strong about getting the message out and making

>> " whom ever

>> it is " that approves mercury use to STOP!

>> I would like to go back to school to become whatever I need to to

>> get the

>> necessary credentials (not sure what they are, though) to do

>> research,

>> writing, etc. to get paid for a working against this practice of

>> using

>> mercury, about which I am so passionate, interested and directly

>> affected by.

>> I wish everyone affected by mercury all the best of luck in beating

>> this

>> thing If there are any questions about my experiences, please send

>> me an

>> email or posting and I will be glad to answer.

>> Sincerely,

>> Cochran (lisalmccoc@...)

>

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

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Yes , After ALL metals are removed from the mouth, DMSA is used to

remove the metals from the body. It is a chelation drug. You can

learn more about it by bringing up information on the net " chelation " ,

amalgam fillings ect. Different search engines will have variety of

different information. Infoseek and Dogpile seem to be the best.

T. Dabney

[This message contained attachments]

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Why not go to www.drday.com Here is someone who used the Gerson

Therapy to cure herself of breast cancer and has ample material available as

to exactly how she did it. The experiences of others as related by Charlotte

Gerson Strauss, and the book by Dr. Gerson himself show the root of many

traumatic diseases to be rooted in the functioning or malfunctioning of the

body. No therapy seems to work for everyone. But it is nice to find a

complete system and then to add some of the newer things as you progress.

Dr. Day also addresses many of the qu estions one has about practical

matters such as what do i do about allthese other medications I've been on ?

How do I go about getting on a program sensibly and many other things that

the average person with no doctor who is willing to guide them has no idea

how to cope with. Anyway this is just a thought. Wishing the best for you

and your husband. cherie

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a: 714X was on 20-20, or one of the magazine programs, a few months ago.

Looked very interesting. You can find out more using a search engine on the web.

Also, look up apricot seeds, and flaxseed oil with cottage cheese. In fact they

have a subscription like this one. You can subscribe at:

FlaxSeedOil-subscribeonelist. And the following article might be helpful.

At

least is can't hurt and it doesn't cost a bunch. Has anyone else heard of, or

tried the Grape Juice Cure?

Everyone please notice that I deleted her original message so you don't have to

read it again.

When Fred Wortman of Albany, Georgia, developed an inoperable malignancy of

the intestine, he faced the prospect of long treatments with x-radiation

" therapy " .

" The doctors, " Mr. Wortman said, " refused to operate when they discovered the

condition of my bank balance. "

Being a wide reader, he remembered a simple remedy for cancer that was given

in a book by a ‘Mrs. Brandt’, and looked it up.

It was rather involved and cumbersome to follow, so he reduced it to its

essentials, took the " cure " and was completely cancer-free within a month.

Wortman then had his experience published in " The Independent " and received

hundreds of replies. Over 200 cancer-sufferers reported complete cures--total

recovery. The grape treatment cured lung cancer in two weeks, he reported.

Cancer

of the prostate took a little longer--about a month. Only four cases of leukemia

(cancer of the blood) were treated, but the judicious usage of grape juice cured

them all.

Start the treatment like this:

Begin with a 24 oz. bottle of (dark concord) grape juice the first thing in

the

morning. Do not eat until Noon. Take a couple of swallows every 10 or 15 minutes

(Don’t gulp it down all at once). After 12 o’clock, live the rest of the day

normally, but

do not eat anything after 8 o’clock in the evening...food seems to carry off the

curative agent in the grape juice, which may be magnesium, so stick to the fast

between 8 P.M. and Noon the following day.

Keep this up every day for 2 weeks to one month.

I’d appreciate hearing of the first-hand results of this treatment. The more

cases,

the better the evidence.

Krebiozen is fine, but it racks up only about 80% cures, and is no longer

available

due to the federal injunction suit, the F.D.A., the A.M.A., etc. Ditto

" Mucorihicin " , the

87% -effective cancer treatment from Pittsburgh.

The dark concord grape juice treatment is reported to be nearly 100%

effective.

J.F. Goodavage

Whitefield, Maine 04362

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Hello, ph F. Goodavage and list,

Yes, I have read about the " Grape Juice Cure " several years ago in a book

by Abbot Burke, <Magnetic Therapy> and elsewhere, and I tried to

locate the original article written by Wortman in the Atlanta Independent

newspaper in the early part of the Twentieth Century. (No success). I have

taken his 28 day " fast' several times as a health detox measure. I can say

that it is very pleasant and not too hard to follow. I ate lunch and dinner

and from 8 PM to 12 Noon I drank only water when thirsty. I never had

hunger cravings. The results are really good with an increase in energy and

a good clean out. I am now a bit suspect about where the grape are grown.

Fluoride treated water areas? In depleted soil? Are they made from

concentrates? In which county are they grown? Etc... Nevertheless, the Grape

Juice Cure of Fred Wortman makes good sense because I recall an old Italian

immigrant telling me that if I wanted to be healthy I would have to eat only

grapes for a two to four week period at least once a year. Thanks for this

posting. Mike Cinelli

============================================================

At 11:34 PM 02/21/2000 -0800, you wrote:

>a: 714X was on 20-20, or one of the magazine programs, a few months ago.

>Looked very interesting. You can find out more using a search engine on the

web.

>Also, look up apricot seeds, and flaxseed oil with cottage cheese. In fact they

>have a subscription like this one. You can subscribe at:

>FlaxSeedOil-subscribeonelist. And the following article might be

helpful. At

>least is can't hurt and it doesn't cost a bunch. Has anyone else heard of, or

>tried the Grape Juice Cure?

>Everyone please notice that I deleted her original message so you don't have to

>read it again.

>

>

> When Fred Wortman of Albany, Georgia, developed an inoperable malignancy of

>the intestine, he faced the prospect of long treatments with x-radiation

> " therapy " .

> " The doctors, " Mr. Wortman said, " refused to operate when they discovered the

>condition of my bank balance. "

>

> Being a wide reader, he remembered a simple remedy for cancer that was

given

>in a book by a 'Mrs. Brandt', and looked it up.

>

> It was rather involved and cumbersome to follow, so he reduced it to its

>essentials, took the " cure " and was completely cancer-free within a month.

>

> Wortman then had his experience published in " The Independent " and received

>hundreds of replies. Over 200 cancer-sufferers reported complete cures--total

>recovery. The grape treatment cured lung cancer in two weeks, he reported.

Cancer

>of the prostate took a little longer--about a month. Only four cases of

leukemia

>(cancer of the blood) were treated, but the judicious usage of grape juice

cured

>them all.

>

>Start the treatment like this:

>

> Begin with a 24 oz. bottle of (dark concord) grape juice the first thing in

>the

>morning. Do not eat until Noon. Take a couple of swallows every 10 or 15

minutes

>(Don't gulp it down all at once). After 12 o'clock, live the rest of the day

>normally, but

>do not eat anything after 8 o'clock in the evening...food seems to carry

off the

>curative agent in the grape juice, which may be magnesium, so stick to the fast

>between 8 P.M. and Noon the following day.

>Keep this up every day for 2 weeks to one month.

>

> I'd appreciate hearing of the first-hand results of this treatment. The

more

>cases,

>the better the evidence.

>

> Krebiozen is fine, but it racks up only about 80% cures, and is no longer

>available

>due to the federal injunction suit, the F.D.A., the A.M.A., etc. Ditto

> " Mucorihicin " , the

>87% -effective cancer treatment from Pittsburgh.

> The dark concord grape juice treatment is reported to be nearly 100%

>effective.

>

> J.F. Goodavage

> Whitefield, Maine 04362

>

>

>

>

>

><!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

><html>

>a: 714X was on 20-20, or one of the magazine programs, a few months

>ago. Looked very interesting. You can find out more using a search engine

>on the web. Also, look up apricot seeds, and flaxseed oil with cottage

>cheese. In fact they have a subscription like this one. You can subscribe

>at: FlaxSeedOil-subscribeonelist. And the following article might

>be helpful. At least is can't hurt and it doesn't cost a bunch. Has anyone

>else heard of, or tried the Grape Juice Cure?

><br><b><tt>From:</tt> <tt>

> Rochon & lt;rrochon@... & gt;</tt>

><br><br>

>Everyone please notice that I deleted her original message so you

>don't have to read it again.

><hr>

><!-- begin banner runid: 1782 crid: 854 -->

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href= " 1/1782/3/_/_/_/951205200/ " ><center>

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> alt= " Click Here "

>

src= " http://adimg./img/1782/3/_/_/_/951205200/KeywordSky-468x60.g

if " ></center><center><font color= " white " ></font></center></a>

><!-- end banner -->

><hr>

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><br> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

><p> & nbsp; & nbsp; & nbsp; When Fred Wortman of Albany, Georgia, developed an

>inoperable malignancy of

><br>the intestine, he faced the prospect of long treatments with x-radiation

> " therapy " .

><br> " The doctors, " Mr. Wortman said, " refused to operate when they discovered

>the

><br>condition of my bank balance. "

><p> & nbsp; & nbsp; & nbsp; Being a wide reader, he remembered a simple remedy

>for cancer that was given

><br>in a book by a 'Mrs. Brandt', and looked it up.

><p> & nbsp; & nbsp; & nbsp; It was rather involved and cumbersome to follow,

>so he reduced it to its

><br>essentials, took the " cure " and was completely cancer-free within a

>month.

><p> & nbsp; & nbsp; & nbsp; Wortman then had his experience published in " The

>Independent " and received

><br>hundreds of replies. Over 200 cancer-sufferers reported complete

cures--total

><br>recovery. The grape treatment cured lung cancer in two weeks, he reported.

>Cancer

><br>of the prostate took a little longer--about a month. Only four cases

>of leukemia

><br>(cancer of the blood) were treated, but the judicious usage of grape

>juice cured

><br>them all.

><p>Start the treatment like this:

><p> & nbsp; & nbsp; & nbsp; Begin with a 24 oz. bottle of (dark concord) grape

>juice the first thing in the

><br>morning. Do not eat until Noon. Take a couple of swallows every 10

>or 15 minutes

><br>(Don't gulp it down all at once). After 12 o'clock, live the rest of

>the day normally, but

><br>do not eat anything after 8 o'clock in the evening...food seems to

>carry off the

><br>curative agent in the grape juice, which may be magnesium, so stick

>to the fast

><br>between 8 P.M. and Noon the following day.

><br>Keep this up every day for 2 weeks to one month.

><p> & nbsp; & nbsp; & nbsp; I'd appreciate hearing of the first-hand results

>of this treatment. The more cases,

><br>the better the evidence.

><p> & nbsp; & nbsp; & nbsp; Krebiozen is fine, but it racks up only about 80%

>cures, and is no longer available

><br>due to the federal injunction suit, the F.D.A., the A.M.A., etc. Ditto

> " Mucorihicin " , the

><br>87% -effective cancer treatment from Pittsburgh.

><br> & nbsp; & nbsp; & nbsp; The dark concord grape juice treatment is reported

>to be nearly 100% effective.

><p> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

& nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbs

p; & nbsp; & nbsp; & nbsp;

>J.F. Goodavage

><br> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp

; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

>Whitefield, Maine 04362

><br> & nbsp;

><br> & nbsp;

><br> & nbsp;

><br> & nbsp;

><br> & nbsp;</html>

>

The Pen is Mightier Than The Sword. ' A Timeold Saying "

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i am crawling out from under my lurking rock. dr. roy watkins in

summerfield is terrific and very knowledgeable. he took me on and had never

treated inclusion body myositis before; a comment that he made. am i

better, who knows? i have remained stable. if you are in north carolina,

it is certainly worth a trip to see chip watkins. and now i am crawling

back under my rock.

ann

" Friends are angels who lift us to our feet when our wings have trouble

remembering how to fly. "

rheumatic (unknown)

> From: Dan Hines <paperhanging@...>

>

> a

> The dr I found first was Dr. Roy Watkins he is great and I just believe

> he would treat these other diseases.

> His address is Hwy. 220 North, Summerfield,NC

> Phone: 336-643-7711

> Dr. Watkins sent me to a dr. friend in Charlotte

> Dr. Neal Speight

> Randolf Rd. Charlotte

> Phone: 704-334-8447

> I just went to see dr speight on the 4th and plan to start the IV

> treatment soon.He wants to do a couple more test first. I like dr.

> watkins so much I dont know if I will stop going to see him. It is a 3

> hr. dr from here. I live between Indian Trail and Waxhaw.

>

>

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

> Shop the web for great deals. Save on Computers,

> electronics, Home furnishings and more.

> 1/1559/0/_/_/_/951267222/

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

>

>

>

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Hi Becky,

My daughter , just turned 15 and is a freshman in high school. Her

rheumy said if we ever had trouble with the schools about Jess' illness, she

has systemic JRA, just let them know and they would handle it. She said we

aren't to try and handle it, she and her office staff would. Maybe you

could talk to your rheumy and see if they have a protocol on helping parents

handle the schools and all the problems this disease can cause with our

children's educations. I wish you the best, if nothing else, print some of

the articles Georgina posts to the list and let them read for themselves

just what you and all the other parents of JRA sufferers are living through,

not to mention what the kids themselves are suffering through.

Hope you can get some results soon!! JODI

becky severance wrote:

> From: " becky severance " <BanJsmom@...>

>

> georgina,

> thank-you for the nice welcome!well you had asked me about

> my daugher she is 13years old she was 9-10 years old when she was

> diagnosed with jra she has what the dr. tells me is polyarticularjra

> it took the dr. a long time and i was scared and running from one dr.

> to another and getting very angry why couldn`t someone just tell me

> anything it was like it hit her over night she was always my healthy

> child never sick etc you know and all of a sudden what a big change

> for the little girl that i knew to a different person and it is still

> that way it has changed are lives she is on so much medicine and she

> is getting tired of doctorsthe medicine she is on is a vitamin once a

> day just over the counter, tylenol allowed 3x`s a day

> ,prednisone(which one day i would like to see her off

> of)hydroxychlor,methotrexate shot she gets once a weekthen 12 hours

> afterher shot she gets 2 leucover then the rest of the week she gets

> folic acid. some pretty powerful stuff but you worry but you also

> have to go day by day but anyhow iam getting off track the weather is

> not been kind to her at all iam hopeing spring is right around the

> corner and maybe that will help but she sure has been having a lot of

> bad days lately i try to keep her as actived as i can she goes

> swimming 2 times a week a coach from a program picks her up plus she

> goes to shriners then on weekends she is in a wow group they do a lot

> of nice things for all the kids but even all that i wish there was

> more i could do .well as you see i could keep on going on and on but

> my chidren are telling that they are hungary so i will go feed them

> but i wanted to write back to you sooner but it has been so crazy i

> had to go to another school meeting and it is always the same thing

> over and over i wish i could tell them that yes tomorrow she is going

> to be well but i can not so in the mean time i wish they could stay

> off my back!the school has been a real treat do other parents have

> the fun of the schools riding your backs?? well thank u i hope u are

> having a good day ill write soon and u 2 please becky

>

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>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

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Hi Becky,

When I read stories like yours, I feel very grateful that we've had lots

of support from my children's school. They've been aware of the JRA

since my son first got sick, towards the end of his kindergarden year.

They've tried to be very helpful and accomodating. I worry a little

about Josh's transition to middle school. He'll be changing schools come

August, starting 6th grade, and I'm sure there will be some new issues

to work on. In fact, I just got a call about scheduling for the last IEP

conference of the year. Josh has had an individualized educational plan

in place since 3rd grade. He falls under the heading of special ed, due

to having a health impairment. He doesn't have a learning disability,

and performs above average academically, but his illness-related

absences are sometimes frequent. Although he never needed any special

services, the school personnel encouraged me to set this up. This year,

after being hospitalized for a week and then having more late and

missed-school days because of a flare, he started having a tutor twice a

week in our home. She comes after school for two hours. Just so he

doesn't fall behind in any of the class work he was absent for. In the

past I'd work with him at home, whenever he started feeling better and

was ready to study. Now the tutor does most of this.

I keep in pretty close contact with his teachers and pick up any work he

may have missed and turn in work that he's completed, on a daily basis.

Josh usually feels worse in the mornings. If he starts feeling better

after breakfast and meds, and a hot shower or bath, I'll bring him in to

school a little late. When a flare is more active, he sometimes feels

terribly sick until noon or even later. The fevers are a big problem for

him, as they make him very fatigued and he'll complain that his body is

sore all over, instead of just having pain and stiffness in a couple

joints. Even on the worst days, it's amazing to see the huge difference

in him by late afternoon, early evening.

Becky, you mentioned that your daughter takes leucover. Was this part of

the plan ever since she started taking MTX or was it added later on, to

combat some of the side effects? Josh takes 1mg of folic acid every day

except the day of MTX injection. He's never had any of the possible bad

side effects from MTX, like mouth sores or any of that. Recently though,

he's getting some slight nausea and LOTS of tiredness afterwards.

Lasting to the next morning. I wonder if this is something that could be

helped by trying leucover? We used to give his MTX orally right before

bedtime on weekends and it wasn't a problem but now that the schedule

has changed to right after school on Thursdays, there does seem to be a

problem. Let me know, okay?

Thanks,

Georgina

becky severance wrote:

> georgina,

> thank-you for the nice welcome!well you had asked me about

> my daugher she is 13years old she was 9-10 years old when she was

> diagnosed with jra she has what the dr. tells me is polyarticularjra

> it took the dr. a long time and i was scared and running from one dr.

> to another and getting very angry why couldn`t someone just tell me

> anything it was like it hit her over night she was always my healthy

> child never sick etc you know and all of a sudden what a big change

> for the little girl that i knew to a different person and it is still

> that way it has changed are lives she is on so much medicine and she

> is getting tired of doctorsthe medicine she is on is a vitamin once a

> day just over the counter, tylenol allowed 3x`s a day

> ,prednisone(which one day i would like to see her off

> of)hydroxychlor,methotrexate shot she gets once a weekthen 12 hours

> afterher shot she gets 2 leucover then the rest of the week she gets

> folic acid. some pretty powerful stuff but you worry but you also

> have to go day by day but anyhow iam getting off track the weather is

> not been kind to her at all iam hopeing spring is right around the

> corner and maybe that will help but she sure has been having a lot of

> bad days lately i try to keep her as actived as i can she goes

> swimming 2 times a week a coach from a program picks her up plus she

> goes to shriners then on weekends she is in a wow group they do a lot

> of nice things for all the kids but even all that i wish there was

> more i could do .well as you see i could keep on going on and on but

> my chidren are telling that they are hungary so i will go feed them

> but i wanted to write back to you sooner but it has been so crazy i

> had to go to another school meeting and it is always the same thing

> over and over i wish i could tell them that yes tomorrow she is going

> to be well but i can not so in the mean time i wish they could stay

> off my back!the school has been a real treat do other parents have

> the fun of the schools riding your backs?? well thank u i hope u are

> having a good day ill write soon and u 2 please becky

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Hi,

Jody, I agree with you. It can help a lot to offer printed information

about JRA, to help educate teachers and other concerned parties. In

fact, the Arthritis Foundation has a brochure written specifically for

teachers who have a student with arthritis. They'll send it (or other

informational pamphlets) free of charge, just for asking. This list also

has a lot of good, current information. Unfortunately, I have had some

parents tell me that even though they brought in written information

about their child's JRA, the teacher never even bothered to read any of

it. The info seemed to just sit, unread, in a desk drawer! When certain

issues keep cropping up, unresolved, maybe it's time to call a

conference.

Meeting with the teachers, the school health aide, and the vice

principal, with everyone sharing info and trying to resolve the problem,

may be more effective. Our doctors don't have a problem with providing

copies of their notes from physical exams and lab results, which pretty

well documents that there is a valid health concern for a particular

child. Any recommendations they make based on their exams are turned in

to the health room to be put on file, and I make sure the teachers are

aware of them. It can be something simple like no running or jumping in

PE until the swelling in an ankle is down, or like the most recent note

Josh got from his rheumatologist last week, stating that he should be

allowed to rest when fatigued, at school. If he's not yet 100% but is

well enough to go to school and be part of the class experience, but

feels tired and wants to put his head down to listen, the teacher knows

that it's warranted and he's not acting out because of bad behavior.

Take care,

Georgina

Jodi Giffin wrote:

> Hi Becky,

> My daughter , just turned 15 and is a freshman in high school. Her

> rheumy said if we ever had trouble with the schools about Jess' illness, she

> has systemic JRA, just let them know and they would handle it. She said we

> aren't to try and handle it, she and her office staff would. Maybe you

> could talk to your rheumy and see if they have a protocol on helping parents

> handle the schools and all the problems this disease can cause with our

> children's educations. I wish you the best, if nothing else, print some of

> the articles Georgina posts to the list and let them read for themselves

> just what you and all the other parents of JRA sufferers are living through,

> not to mention what the kids themselves are suffering through.

> Hope you can get some results soon!! JODI

>

> becky severance wrote:

> > georgina,

> > thank-you for the nice welcome!well you had asked me about

> > my daugher she is 13years old she was 9-10 years old when she was

> > diagnosed with jra she has what the dr. tells me is polyarticularjra

> > it took the dr. a long time and i was scared and running from one dr.

> > to another and getting very angry why couldn`t someone just tell me

> > anything it was like it hit her over night she was always my healthy

> > child never sick etc you know and all of a sudden what a big change

> > for the little girl that i knew to a different person and it is still

> > that way it has changed are lives she is on so much medicine and she

> > is getting tired of doctorsthe medicine she is on is a vitamin once a

> > day just over the counter, tylenol allowed 3x`s a day

> > ,prednisone(which one day i would like to see her off

> > of)hydroxychlor,methotrexate shot she gets once a weekthen 12 hours

> > afterher shot she gets 2 leucover then the rest of the week she gets

> > folic acid. some pretty powerful stuff but you worry but you also

> > have to go day by day but anyhow iam getting off track the weather is

> > not been kind to her at all iam hopeing spring is right around the

> > corner and maybe that will help but she sure has been having a lot of

> > bad days lately i try to keep her as actived as i can she goes

> > swimming 2 times a week a coach from a program picks her up plus she

> > goes to shriners then on weekends she is in a wow group they do a lot

> > of nice things for all the kids but even all that i wish there was

> > more i could do .well as you see i could keep on going on and on but

> > my chidren are telling that they are hungary so i will go feed them

> > but i wanted to write back to you sooner but it has been so crazy i

> > had to go to another school meeting and it is always the same thing

> > over and over i wish i could tell them that yes tomorrow she is going

> > to be well but i can not so in the mean time i wish they could stay

> > off my back!the school has been a real treat do other parents have

> > the fun of the schools riding your backs?? well thank u i hope u are

> > having a good day ill write soon and u 2 please becky

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Guest guest

georgina, hi how are you well before i forget everything from your letter my

daughter also has a iep for school and every school year we have had a tutor

this is the first year we didn`t have one because they talked me into putting

her into special ed which was suppost help on all the walking to classes and

on all the writing they would adapt everything but right she is in there

because of her jra not you know because she is a smart girl but anyhow it is

nothing like they said or i though but what they wanted to do was send her to

a different school and i said no she is staying right where she belongs this

school is in our district iam not going to go way acrossed town because they

said they didn`t have room for her at this school its just seem like ever

since she got sick we have had to fight with schools - i tryed to get her ssi

can`t get that till shes 18 they tell me but we finally got a medical card

for her some days are a nightmare then when we go to the store and she gets

tired but not done shopping she will go around in the wheelchair people think

she is playing in it and ask her to put it back so i have to go get it cause

she comes to me crying but anyhow iam getting off of track you also asked me

about the leucover when she first went on the methotrexate we were getting

mouth sores really bad all over the mouth lips inside, down throat , and she

couldn`t eat or even brush her teeth so we went to dr. londino in pittsburg

he put her on the leucovor at first it was just 1 then went to our next

appointment he put her on 2 but we still get them but not as bad ( now that

iam telling you about this she will probaly get a whole bunch) but any how

she also usescarafate and lidocaine she mixes it and swishes and spits , or

dexameth elix one tea. as needed to swish and spit or benadryland maalox we

mix to swish and spit. so i feel iam forgetting to tell you something esle

but i have got to go and also i lost my train of thougt so if i remember ill

let you know so in the meantime i hope i helped you cause you sure have me i

printed some letters for school thank you very much to you and all the others

to i feel like i have known you all forever but what a way to meet uh? things

work out in strange ways don`t they well i better get off of here take care

-- becky

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Guest guest

Hi Becky,

Thanks for all of the helpful information about leucovere. I hope your

daughter's mouth sores start to clear up. Must be so hard for her. Josh

has never had that side effect. I was just wondering if it might help

with the fatigue he gets after having his methotrexate. he gets it

today, as a matter of fact, so I think I'll ask the nurse about this and

see what she thinks. There's a show tonight at the Maui Arts and Culture

Center, with Chinese Acrobats, and Josh's tutor has an extra ticket. She

invited him to go but he's worried that he'll be too tired and not feel

well. I'm hoping that a nap after school may give him more energy later.

Late Thursdays and early Fridays have become a bit of a problem :(

As an aside, I just saw a posting from a rheumatologist on the arthritis

newsgroup about treatment of these mouth sores. I'll post what he

suggests, below.

Take care,

Georgina

it is very important that you get regular blood checks as per your

rheumatologist instructions. This will include a blood count. The blood

count includes a white cell count and platelet count. Patients who have

severe mouth ulcers on methotrexate should ensure that their white cell

counts are OK. If the counts are OK, a useful remedy that was quoted

anecdotally at an ACR meeting 2 years ago (unfortunately I cant remember

which speaker said it), and which I have prescribed, successfully for

mouth

ulcers of methotrexate- is to take 100mg of allopurinol (actually used

for

gout) and mix it in a 50 ml glass of water and rince the mouth, then

discard

without swallowing. This is a method you might want to ask your doc

about,

(and not to do without his/her knowlege.)

The method is outlined on my methotrexate site.

regards

drdoc

www.arthritis.co.za

BanJsmom@... wrote:

> georgina, hi how are you well before i forget everything from your letter my

> daughter also has a iep for school and every school year we have had a tutor

> this is the first year we didn`t have one because they talked me into putting

> her into special ed which was suppost help on all the walking to classes and

> on all the writing they would adapt everything but right she is in there

> because of her jra not you know because she is a smart girl but anyhow it is

> nothing like they said or i though but what they wanted to do was send her to

> a different school and i said no she is staying right where she belongs this

> school is in our district iam not going to go way acrossed town because they

> said they didn`t have room for her at this school its just seem like ever

> since she got sick we have had to fight with schools - i tryed to get her ssi

> can`t get that till shes 18 they tell me but we finally got a medical card

> for her some days are a nightmare then when we go to the store and she gets

> tired but not done shopping she will go around in the wheelchair people think

> she is playing in it and ask her to put it back so i have to go get it cause

> she comes to me crying but anyhow iam getting off of track you also asked me

> about the leucover when she first went on the methotrexate we were getting

> mouth sores really bad all over the mouth lips inside, down throat , and she

> couldn`t eat or even brush her teeth so we went to dr. londino in pittsburg

> he put her on the leucovor at first it was just 1 then went to our next

> appointment he put her on 2 but we still get them but not as bad ( now that

> iam telling you about this she will probaly get a whole bunch) but any how

> she also usescarafate and lidocaine she mixes it and swishes and spits , or

> dexameth elix one tea. as needed to swish and spit or benadryland maalox we

> mix to swish and spit. so i feel iam forgetting to tell you something esle

> but i have got to go and also i lost my train of thougt so if i remember ill

> let you know so in the meantime i hope i helped you cause you sure have me i

> printed some letters for school thank you very much to you and all the others

> to i feel like i have known you all forever but what a way to meet uh? things

> work out in strange ways don`t they well i better get off of here take care

> -- becky

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Guest guest

georgina, hi! i hope josh got to go to the arts and culture center he wasn`t

to tired ? actually i think it is the methotrexate because my daugher is

always tired too or she says she has a stomace ache or feels like she is

going to be sick and either before her shot or after she does vomit we went

for a shot today and came home and went to bed instead of going to school but

it was pretty cold out too and her hips and knees and ankles were giving her

trouble today i keep on telling her and myself that spring is just around

the corner well i just wanted to thank you for writing back i enjoy hearing

from you and also so the information on the mouth sore what to use i never

heard of it iam going to ask next week at dr. so thanks again becky

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Guest guest

Hi Becky,

Unfortunately, he didn't feel like going. He wasn't bummed out. Just

felt more like relaxing at home, and taking it easy. I hope as the

Spring approaches, things get easier for your daughter. I'm glad the

info about how that doctor treats the mouth sores might be of some help

:)

Take care,

Georgina

BanJsmom@... wrote:

> georgina, hi! i hope josh got to go to the arts and culture center he wasn`t

> to tired ? actually i think it is the methotrexate because my daugher is

> always tired too or she says she has a stomace ache or feels like she is

> going to be sick and either before her shot or after she does vomit we went

> for a shot today and came home and went to bed instead of going to school but

> it was pretty cold out too and her hips and knees and ankles were giving her

> trouble today i keep on telling her and myself that spring is just around

> the corner well i just wanted to thank you for writing back i enjoy hearing

> from you and also so the information on the mouth sore what to use i never

> heard of it iam going to ask next week at dr. so thanks again becky

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