Re: Digest Number 844

[Guest guest]

Hi, Radha,

>i want to have the hemex test done, but want to know first if there r any

>specific characteristics or symptoms that one has with this

>anti-coagulation,

When I was at a talk by Berg, the first thing he did with anybody wanting

the test was shake their hand - if the hands are cold, that is an indicator

of poor blood flow, and maybe overactive coag pathways. Also periods of cold

fingers that come and go, and patchy mind fog, are potential indicators of

sometimes reduced blood flow.

Jerry

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[Guest guest]

Hi group:

I don't know whether anyone remembers (or cares about) an earlier discussion

about the B-cell depletion treatment that is being tried quite successfully

for RA patients in London, England. But in case anyone is interested, I

wanted to pass along some recent correspondence from Jo , the

rheumatologist and university professor who is pioneering the treatment. It

is approved for non-Hodgkins lymphoma but at this point is " off label " for

RA.

Following is a recent email to me from Dr. :

I am only treating people referred to me through the UK health service.

That may change, but not for a month or two. I am generally treating people

who have failed to respond to other medication, but my restrictions are

becoming looser. We have treated 10 people and 8 are essentially completely

well. We probably have enough information already to say that this is the

most effective treatment for any RA patient (at least RF positive) but we

have to move forward cautiously. Other physicians will take an interest

soon, but they are still having difficulty understanding the background

science at present!

This treatment is pretty radical. It consists of zapping all or nearly all

of the body's B cells, the ones that go awry and attack the joints. When the

new B cells grow they are healthy ones that don't view the body as an enemy.

Anyway, I know some people are interested in hearing about new treatments

and their progress, so thought I would share.

Rhonda

(RA since June 1999, doing well on RA SPES, waiting for the day I can get my

B cells destroyed!)

[Guest guest]

Thank you for the information, Rhonda. Do you know if this treatment is

as dangerous as bone marrow transplant? It sounds great, but can it

seriously injure of kill people? Please let us know anything you hear as

the study goes on.

thanks,

Gloria

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[Guest guest]

Dear Rhonda,

Delighted to hear of some new treatment in England. Can you let me know

where Dr is based so that I can get in touch with him. The

treatment sounds fairly drastic but I'd be interested to know more.

Especially as I can't even get my rheumatology consultant to put me on

teracycline!

na Rostas

RA 2 years

Methotrexate ..... & Volterol ( & sulphasalazine being staged out)

On Fri, 2 Jun 2000, Rhonda wrote:

> Hi group:

> I don't know whether anyone remembers (or cares about) an earlier discussion

> about the B-cell depletion treatment that is being tried quite successfully

> for RA patients in London, England. But in case anyone is interested, I

> wanted to pass along some recent correspondence from Jo , the

> rheumatologist and university professor who is pioneering the treatment. It

> is approved for non-Hodgkins lymphoma but at this point is " off label " for

> RA.

> Following is a recent email to me from Dr. :

>

> I am only treating people referred to me through the UK health service.

> That may change, but not for a month or two. I am generally treating people

> who have failed to respond to other medication, but my restrictions are

> becoming looser. We have treated 10 people and 8 are essentially completely

> well. We probably have enough information already to say that this is the

> most effective treatment for any RA patient (at least RF positive) but we

> have to move forward cautiously. Other physicians will take an interest

> soon, but they are still having difficulty understanding the background

> science at present!

>

>

>

>

> This treatment is pretty radical. It consists of zapping all or nearly all

> of the body's B cells, the ones that go awry and attack the joints. When the

> new B cells grow they are healthy ones that don't view the body as an enemy.

> Anyway, I know some people are interested in hearing about new treatments

> and their progress, so thought I would share.

> Rhonda

> (RA since June 1999, doing well on RA SPES, waiting for the day I can get my

> B cells destroyed!)

>

>

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

> Old school buds here:

> 1/4057/0/_/532797/_/960007450/

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

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

mmmm

[Guest guest]

Hi Rhonda,

I would also like to know the name of Dr. and also where one can

contact him as my brother has RA and is in England right now. He could

contact Dr for the antibiotic treatment who would also explain to

him what it's all about.

With kindest regards,

Zanash

[Guest guest]

I could download the file, it opened in Word with symbols and boxes and no text. What am I doing wrong? Is there another way to send this?

[Guest guest]

Dear List,

When you purchase a lotion base (for example) from another company and sell

it as your own, what are the label requirements? Any advice for a

toiletries newbie on sending cosmetic samples to a lab for testing?

Thanks, Amy

NetZero Platinum

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[Guest guest]

At 08:09 AM 3/21/2002, you wrote:

>Message: 3

> Date: Thu, 21 Mar 2002 14:08:25 -0000

> From: " kathleenstokes2000 " <kathleenstokes2000@...>

>Subject: Pregnancy

>

>Dear Group:

> Maybe an important question: Did any of you mothers of girls

>with autism have any of the following during pregnancy:

> 1. Interuterine Growth Restriction (baby didn't grow normally)

> 2. Migraine headaches

> 3. Urinary tract infection

> 4. Weight loss during pregnancy

> 5. Pitocin, or other inducing drugs during labor

> 6. Prolonged labor

> 7. Prolonged prodomal labor (non-productive, before actual

>dilating labor commenced)

> 8. Muconeum present at birth of child

> 9. Lower APGAR scores for child

>

> Thank you in advance for your responses.

>

>Kathleen Stokes

>

Dear Kathleen,

I have been a lurker on the Autism in Girls list for a number of months,

but I have never responded to any of the posts until now. I was interested

in this post for two reasons, 1) I have always wondered if the delivery

process contributed to, or perhaps even caused, my daughter's problems. 2)

your last name, My maiden name is Stokes.

I am the 60 year old mother of Malena. Malena is 36. She went through a

diagnostic work-up at the Children's Health Council in Palo Alto,Cal in '67

or'68. I was never shown the exact diagnosis. I went to a meeting where the

various proffessionals who had examined her presented an over-view of their

findings. The psychiatric social worker who had recommended the diagnostic

work-up met with me later to try to help me make sense of it all. Most of

what was discovered was what was NOT present. I never heard anything said

in either meeting that told what WAS THE MATTER. Near the end of the

meeting with the psychiatric social worker she suggested I go to the

library and do some research on AUTISM. This was my first exposure to this

word in relation to my daughter.

Over the years she has been in programs in public schools mainly in Cal. At

first the programs were geared to what was called emotionally disturbed

children, but over the years the designation changed to programs for

autistic children. However, there has never been a specific diagnosis of

autism. In the last 14 years, since she left school, I have not sought

treatment or diagnosis. I have spent my resources trying to find the most

productive way to live with the situation. A way that would give her, and

the rest of the family the best quality of life possible. I explain all of

this because I am not sure if we fit within the requirements of your sample.

That said: I was given pitocin during labor; the labor was prolonged ( she

is the youngest of my three children and presented the most difficult

delivery of the three);

and I had periods of " false labor " for one-two weeks before delivery.

Malena was the largest of my three children weighing in at 9Lbs 13oz.

I don't know if this information is useful to you, but, I thought I would

throw it out there just in case.

Sharon (Stokes) Giles

[Guest guest]

From: "Margaret" <zztinau@...>

Subject: pain

I found a page on total joints that I thought people might

be interested in.

http://www.totaljoints.info/pain_THIP.htm#4

Thank you Margaret that site is very helpful. I have bookmarked it so when I have time I can read more.