help

March 10, 1999

Dear ,

Once you are a registered member of the group (go to: /

and enter as the name of the group you want to join), you

may post by simply addressing an e mail to: onelist.

The messages all go to the control center where I moderate them (for profanity

or other unpleasantness). Once the messages are approved _ and I have

approved all but one - and he was a spammer trying to sell stuff- you get it

in about ten minutes!

Hope to see you on the list soon.

May 14, 1999

Shell

I have been living with PA for 30+ years and a couple of years ago, my toes

were so bad that I was having a real problem getting around. The DR. cut and

straightened one toe on each foot -- just a little bit. The help was

dramatic. He explained that straightening very much was a real risk on small

bones. The risk is in losing blood supply followed by amputation. Press on

if you need it, but don't expect too much help from the Dr.

[ ] HELP

>From: " Michele Dutson " <dutson1@...>

>

>Hi everyone,

>

>My name is Shell and am 28 yrs old. I have had PA since 21. My toes look

>like bent chippolatas, fingers look like their broken and extremely

swollen,

>knees and feet shot away, I could go on but it just gets boring.

>

>The reason for writing is, I am having real problems with my hands/wrists.

>I have been to many specialists asking if there is something they can do

>straighten the fingers, and so far I am told that vanity is no reason for

an

>op, nice little ????, I have lost my rag many a time with them. I need

some

>help, mobility is getting worse and the pain is getting unbearable where I

>even have to get the hubby help me dress/undress some days, I am popping

>more pills than I care to remember.

>

>Does anyone have any information to help. I live in Middlesex in the UK.

>

>Any help would be appreciated.

>

>Shell

>

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

>Did you know ONElist has over 300 Star Wars lists?

>http://www.ONElist.com

>Join one today!

>

May 14, 1999

Michele,

I am so sorry that your doctors are such unsympathetic a_ _ holes. They

should try to experience just a pinch of what your going through and

feeling. Im sure they would sing a different tune.

It is so hard to put your trust as well as your pocketbook into a doctor

whom just " doesn't get it " . I wish I had some sort of helpful advice for

you. I do have however, emotional support .

Good luck, I'll keep my eyes and ears peeled for any info.

Dez

July 22, 1999

Hi Shell

My name is . I am due to have the knuckles

replaced in my left hand next spring. I saw a hand

surgeon a few months ago and he would of wanted to get

right to work but I'm the primary caretaker fo my 3 yr

old daughter and couldn't face a month or so of being

one-handed(especially since I'm left-handed). My Mom

will be able to come and help out next spring thus the

wait. From what I undestand joint replacement is the

only way to correct damaged joints. My current dose of

17.5 mg MTX(methotrexate) has pretty much eliminated

my pain but my left hand is pretty deformed. If I were

you I would definitely see a hand surgeon at least for

an opinion. Mine couldn't guarentee what my results

woould be but did seem confident I could be helped a

lot(but then it it his job to cut on people).BTW(by

the way) no need to tell people your from the UK when

you use the word arse in your post<g>.

--- Michele Dutson <dutson1@...> wrote:

> From: " Michele Dutson " <dutson1@...>

>

> Hi,

>

> My name is Shell and have been reading all mails

> with regards to PA. I was

> diagnosed at the age of 21 and it has been a pain in

> the arse since. I am

> now 28 and have been married for 6 years, and feel

> this PA is now finally

> putting the strain on.

>

> My main problem is my hands. Apart from one finger

> all my fingers are bent

> and swollen, and are obviously in extreme pain. Not

> having much joy with

> docs and specialisits. Been seeing an alternative

> medicine person, not

> really helping either.

>

> My question is, does anyone out there know of any

> operation that is

> available to help straighten the fingers. They are

> not only painful and

> ugly, but very difficult to use in a normal day to

> day life.

>

> Any suggestions are welcome. By the way I live in

> the UK.

>

> Thanx

> Shell

> Any suggestions or names would be very grateful

>

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

May 4, 2000

Hi,

I haven't a clue as to a consultant, but wanted you to know that if anyone does

they will let you know. These are a great bunch of people. They have a world of

information to pass on to you. I have benefited from their knowledge for a

couple of weeks now.

We do understand the pain, depression and are here for you. Anytime you need to

talk, we are as close as your computer.

Donna

la-b44b@... wrote:

I am a 53 year old teacher with psoriasis and PArthritis. Since

November last I have been experiencing more pain and been unable to

work since Xmas. Although x-rays show little or no evidence of

damage, I am in extreme pain. I take Sulfasalazine and Tramadol. My

G.P. has limited knowledge and consultant is a rhuematoligist. Can

anyone suggest a helpful consultant or contact. Bouts of depression

follow spells of great pain. My wife and family are wonderful, but

worried. I am in Gt. Manchester area, thanks Gordon

October 2, 2001

You'll find lots of suggestions in the archieves and you can use www.drday.com,

www.hacres.com and www.betterwayhealth.com and www..com for more

suggestions.

May God bless and keep you.

Sands <sandeep_mall@...> wrote: Hi all,

Unfortunately my mom have been diagnoised with breast

cancer and had 15 out of 18 nodes effected. She had

gone thru surgery and 4 chemos already. She will have

4 more chemos to go.

Side by side we want to start alternative therapies

also.

We are joint family with four generations leaving

together from my grandfather to my son who is 10 years

old. My mom is 53 years. We are vegetarians.

Can any of u suggest what diet we should take and what

are the alternate therapies we should take.Also what

foods should be avoided

We will be obliged to u all for this.

Thanks and Regards

Sandeep Mall

LNM Exports Pvt Ltd

Shed no. 221/D , HSIDC Indl estate

Sector - 59

Faridabad - 121004

India

Phone - 129- 523-6545

Fax- 129- 523-7986

Email - sandeep@...

=====

I am today what I am because of the choices i made yesterday

NEVER ASSUME - U MAKE AN ASS OF U AND ME

October 2, 2001

:

Look here for many many alternative treatments:

http://www.alkalizeforhealth.net/cancerselftreatment.htm

Floyd

October 11, 2001

In a message dated 10/10/2001 12:57:10 AM Eastern Daylight Time,

magicpaints2001@... writes:

> My girlfriend has epilepsy and gets grand mal seizures

> only in her sleep, and petit mal seizures when she is

> awake. She is 26 and gets them once a year, this year

> she has had three and we are wondering what the

> problem is. Her idiot doctors just keep recommending

> more dilantin, but when she has her seizure, her

> dilantin level is around 7 which is odd considering

> she is now taking 500 mg a day. We started massage

> therapy with jasmine oil and we'll see if that works.

> Could you recommend anything for us. Thank you

>

I know a lot of people with epilepsy including my boyfriend. If her

dilantin level is so low, that's why she is having a lot of seizures. She may

need to take a different type of medication like Tegratol. My boyfriend had

the same thing happen to him and he found out that the Dilantin was to weak.

He never got another seizure again once he was on Tegratol. He use to have

Grand Mal seizures while he was awake and sleeping. I know they are going to

tell you some alternative medicine, which I truly believe in, but I also

believe in mixing alternative with modern medicine to get a real good effect.

Please take your friend to a Doctor, don't mess around, she could die.

October 11, 2001

What causes the seizures?

Foggs

In a message dated 10/11/2001 4:10:40 AM Eastern Daylight Time,

JFA1298@... writes:

<< I know a lot of people with epilepsy including my boyfriend. If her

dilantin level is so low, that's why she is having a lot of seizures. She

may

need to take a different type of medication like Tegratol. My boyfriend had

the same thing happen to him and he found out that the Dilantin was to weak.

He never got another seizure again once he was on Tegratol. He use to have

Grand Mal seizures while he was awake and sleeping. I know they are going to

tell you some alternative medicine, which I truly believe in, but I also

believe in mixing alternative with modern medicine to get a real good

effect.

Please take your friend to a Doctor, don't mess around, she could die.

>>

In a message dated 10/10/2001 12:57:10 AM Eastern Daylight Time,

magicpaints2001@... writes:

> My girlfriend has epilepsy and gets grand mal seizures

> only in her sleep, and petit mal seizures when she is

> awake. She is 26 and gets them once a year, this year

> she has had three and we are wondering what the

> problem is. Her idiot doctors just keep recommending

> more dilantin, but when she has her seizure, her

> dilantin level is around 7 which is odd considering

> she is now taking 500 mg a day. We started massage

> therapy with jasmine oil and we'll see if that works.

> Could you recommend anything for us. Thank you

>

October 12, 2001

I agree here. , shouldn't we also direct ourselves to what

causes seizures, then go about finding the least harmful treatment to

remove the cause? Have you looked up the side effects of Tegratol? And

what is it made of?

Leo

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

>

> What causes the seizures?

>

> Foggs

>

> In a message dated 10/11/2001 4:10:40 AM Eastern Daylight Time,

> JFA1298@a... writes:

>

> << I know a lot of people with epilepsy including my boyfriend. If

her

> dilantin level is so low, that's why she is having a lot of

seizures. She

> may

> need to take a different type of medication like Tegratol. My

boyfriend had

> the same thing happen to him and he found out that the Dilantin was

to weak.

> He never got another seizure again once he was on Tegratol. He use

to have

> Grand Mal seizures while he was awake and sleeping. I know they are

going to

> tell you some alternative medicine, which I truly believe in, but

I also

> believe in mixing alternative with modern medicine to get a real

good

> effect.

> Please take your friend to a Doctor, don't mess around, she could

die.

> >>

>

> In a message dated 10/10/2001 12:57:10 AM Eastern Daylight Time,

> magicpaints2001@y... writes:

>

> > My girlfriend has epilepsy and gets grand mal seizures

> > only in her sleep, and petit mal seizures when she is

> > awake. She is 26 and gets them once a year, this year

> > she has had three and we are wondering what the

> > problem is. Her idiot doctors just keep recommending

> > more dilantin, but when she has her seizure, her

> > dilantin level is around 7 which is odd considering

> > she is now taking 500 mg a day. We started massage

> > therapy with jasmine oil and we'll see if that works.

> > Could you recommend anything for us. Thank you

> >

September 26, 2002

you're living in a shelter and you have a computer.....?....hmmmmm

September 26, 2002

I've heard that shark cartilage will stop blood vessels from forming

on the tumor and by taking it the tumor would starve to death. I'm

not an expert but maybe that would help .

- In Dr@y..., " " <kevin_g97209@y...> wrote:

> I have had cancers removed from my tounge last year and all seemed

> well untill May.I have a tumor growing on the side of my neck it

> covers most of my right side there.Im in a serious way here,...I

have

> no health insurance,very limted resources as Im living in a

> shelter,and the hospital cannot do anymore without payment(and I

dont

> want to be cut on either).I need to know if this treatment has any

> success,Im afarid I dont have time to try more then one so if

> you'vehad luck with please let me know.

>

> Thanks,

September 27, 2002

Thanks for the info Ill check into it. Im still looking for someone

that used this first hand,.....and to the other comment,..yes the

shelter has a computer I can use.

> I've heard that shark cartilage will stop blood vessels from

forming

> on the tumor and by taking it the tumor would starve to death. I'm

> not an expert but maybe that would help .

September 27, 2002

have you seen this website yet

http://www.trunkerton.fsnet.co.uk/essiac.htm

> I have had cancers removed from my tounge last year and all seemed

> well untill May.I have a tumor growing on the side of my neck it

> covers most of my right side there.Im in a serious way here,...I

have

> no health insurance,very limted resources as Im living in a

> shelter,and the hospital cannot do anymore without payment(and I

dont

> want to be cut on either).I need to know if this treatment has any

> success,Im afarid I dont have time to try more then one so if

> you'vehad luck with please let me know.

>

> Thanks,

September 27, 2002

In a message dated 9/26/02 7:27:59 PM Eastern Daylight Time, kevin_g97209@... writes:

I need to know if this treatment has any

success,Im afarid I dont have time to try more then one so if

you'vehad luck with please let me know.

Thanks,

Dr. s treatment has had it's successes.....on others it has had no effect. There is only one way for you to know if it will work for you.......try it. If you do decide to go for it...do it all, the whole program. No compromises.

I believe there are tesimonials at some of the sties litsed at the bottom of the message. And for sure at www.save.net

At the bottom of the page called "Do 's Theories and Programs Work?" is a link called "Testimonials" along with the necessary disclaimer......

Khepri

FWIW

Khepri

September 27, 2002

In a message dated 9/26/02 10:02:19 PM Eastern Daylight Time, digirg46@... writes:

you're living in a shelter and you have a computer.....?....hmmmmm

Or is it access to a computer?

Khepri

October 31, 2002

JR,

Many states have High Risk Ins Pools to provide ins to individuals denied

frequently by other carriers.

I have HIV/AIDS and I have ins under Texas high-risk pool...it's

administered by Blue Cross/Blue Shield and premiums are based upon age.

Good luck,

OR eon

October 31, 2002

Why do you think someone with Kleinfelter Syndome should be

considered HIGH RISK?

> JR,

>

> Many states have High Risk Ins Pools to provide ins to individuals

denied

> frequently by other carriers.

>

> I have HIV/AIDS and I have ins under Texas high-risk pool...it's

> administered by Blue Cross/Blue Shield and premiums are based upon

age.

>

> Good luck,

>

> OR eon

October 31, 2002

JR,

I was in no way implying you are high risk. What I was addressing was the

issue that you cannot obtain insurance and simply that some states have

" high risk pools " mainly individuals that have a potentially terminal

illness and are uninsurable by most carriers.

Kleinfelter's Syndrome may not be terminal, but it might be worth inquiring

with Florida's high-risk pool if they have such.

Perhaps you will obtain feed back from other Kleinfelter's members of this

group, what their insurance situation was.

Again,

Good luck,

OR eon

November 1, 2002

LesMeans you wrote:

" I am XXY but I'm not gay or weird or any thing else. "

Perhaps as a gay man, I was a little over sensitive to your statement. I

felt is was derogatory to gays, weirds and anything elses.

OR eon

64 yo gayman

December 8, 2002

Regarding the message below from aniko1000@..., six things to suggest:

1. Here's the biggest issue of all. Is she open to using alternative

approaches? Nobody can make that decision for her. Her doctors will no doubt

be against the idea and do what they can to talk her out of it. Is she the

type who will stand her ground? How open minded is she? How determined is

she to beat it?

2. After seeing that scary list of drugs she is taking, which don't seem to

be doing much good from what you say, her digestive tract is probably

damaged, especially if she has had chemotherapy. This is serious. A large

percentage of cancer patients actually die of malnutrition.

The products Seagest and Seacure (the same product, differrent label) are a

fermented fish protein in pill form proven for many years now to restore the

lining of the digestive tract. This little-known, unusual protein source

has also proven superior for all kinds of digestive conditions like

diverticulitis, IBS, leaky gut etc. It is easily absorbed and used for a

variety of healing purposes throughout the body. Much success has been had

in South America treating cancer patients. Just 3 - 6 grams per day. The

better news is it is still inexpensive. Do an Interent search for best

prices.

3. Modified citrus pectin has proven very useful in halting the spread of

cancer (metastasis). The Journal of the National Cancer Institue has

published a study on its success. Recommended dose is 15 grams, or about

three rounded teaspoons a day. Source: Advanced Nutritional Products, West

Palm Beach, Florida 888-436-7200. Note - this is not the same as

conventional citrus pectin sold in health food stores.

4. Immune system builders .... key-ripes! There are all kinds of them these

days. AHCC is a hybrid mushroom compound developed in Japan and now used by

hunderds of hospitals there and in Asia. It is one of the world's best.

Other popular ones are MGN3, Immunocal, Transfer Factor Plus, Graviola (see

N-Tense at www.rain-tree.com) and BioChoice Immune. New and imporved ones

seem to be showing up weekly.

5. Shark Cartilage has proven to fight the growth of tumors, but when used

as the only alternative treatment for cancer results are mixed. Very useful

when used with other alt. treatments like immune system builders and potent

enzymes preprations like Wobenzym or Megazyme Forte.

6. Finally, Null PhD, the high profile 'celebrity' natural healing guru

was featured on our local PBS TV station the other night during a fund

raising drive. He briefly touched upon alt. cancer treatments stressing

every cancer patient should be taking one form or another of chlorophyll.

Barley grass and alfalfa tablets are excellent sources. Lorraine Day MD of

www.drday.com, beat her cancer using natural means. She was so impressed

with barley she now sells it from her website.

- Art

[ ] help

> Hi!

> A friend's mom has been diagnosed with adeno-carcenoma of upper right

> corner of liver last week. She also diagnosed with adeno-carcenoma of

> pancrease since 1992. Current condition : nausea, vomiting, abdominal

> pain, constipation(often) and diabetis. She had her gold-bladder

> removed also in 1992. She is 75 years old. (her medications

> include:Duragestic,Endocet, Metaclopromine, Prevacid, Phenergan,

> Laxatives..

> At this point what can help the immune system to fight? (The doctors

> are recomending another surgery for the liver...)

>

January 14, 2003

Hi, , how far from Pittsburgh are you? I go to a group of rheumatologists

at the University of Pittsburgh Medical Center. They have patients who come from

Ohio and Virginia. These doctors are very good and I am very pleased with the

care I receive from them. Maureen

" celticangyl <celticangyl@...> " <celticangyl@...>

wrote:Howdy,

I know we cannot discuss physicians onlist... but if there is anyone

in ohio that is seeing a rheumatologist, I desperately need help.

Finding one here is becoming impossible. Any help you can give would

be appreciated... email me privately if you wish.

Blessings

January 15, 2003

> Howdy,

> I know we cannot discuss physicians onlist...

> but if there is anyone in ohio that is seeing

> a rheumatologist, I desperately need help.

> Finding one here is becoming impossible. Any

> help you can give would be appreciated...

> email me privately if you wish.

>

> Blessings

>

Hi ,

There is no proscription against discussing doctors on the list as

far as I know. In fact, we have a short list of " recommended "

and " NOT recommended " doctors in our database at:

http://snurl.com/lby

One of the recommended doctors is even in Ohio. Unfortunately he is a

dermatologist rather than a rheumatologist, but perhaps he could

recommend a good rheumatologist to you. His name, address and phone

number are:

Dr. LePage Dermatologists of S.W Ohio

Dayton and Troy, Ohio

937-339-8380

Please go to http://snurl.com/lc0 to read the information about him.

-- Ron

P.S.

You may notice the very short URL's I've posted above that link to

pages within our forum (normally these links are very long). I

recently tried out an *excellent* and free service that I read about

in PC World Magazine. It allows users to " Snip " a long URL and

convert it to a very short one. The way it works is that

the " SnipURL " website automatically creates a forwarding address on

their own website for you when you " Snip " the URL. The free service

is called " SnipURL " and the website address is:

http://snipurl.com

It appears to be perfectly legitimate as far as I can tell and there

isn't even any advertising. So far at least, I don't hesitate to

recommend the service. It makes it possible to convert very long web

site addresses to very short ones, so there's no worry of the

address " wrapping " around to multiple lines of text and not

being " clickable " because of it. You can even put a " bookmarklet " on

your browser's toolbar that does the conversion from long URL to

short URL with one click! Note: I am not affiliated with the SnipURL

website in any way shape or form.

January 16, 2003

Help! The idiot that my pcp wants me to see (only one in Dayton Ohio area that

takes caresource) is listed on the ones NOT reccommended... I was told by my pcp

that he does breast exams on every female who goes to see him!!!!

Help- Need Rheumy in Ohio pronto!

> Howdy, > I know shouldn't discuss physicians onlist...

> but if there is anyone in Ohio that is seeing

> a rheumatologist, I desperately need help.

> Finding one here is becoming impossible. Any

> help you can give would be appreciated...

> email me privately please!

>

> Blessings

>

Hi ,

There is no prescription against discussing doctors on the list as