Re: Digest Number 96

[Guest guest]

I have lived most of my life in the suburbs of Flint, MI. I read with

interest the news story Carr did on Immunex. I recently moved from

that area to Worcester, Mass area. I know that channel 12 news would not do

a news story that they did not feel would be good for the community to know.

But the first thing that came to my mind when I read this article in the RA

digest was it is a supplement that a well known doctor in that area is

selling as a treatment for RA in the area. This is a doctor that is not a

rheumatologist but treats many patients in the area with autoimmune symptoms.

There are not enough rheumatologists in that area to see all the patients

that have autoimmune problems. I know because I lived there for 37 years of

my life and only saw a rheum dr. 3-4 times a year. Family practioners handle

the day to day care and flare care of autoimmune patients. This doctor that I

am wondering if is hawking this new supplement is known for his questionable

treatments. He does not take any forms of insurance and all his patients pay

out of their pockets for his treatments. His practice is thriving because

many people see him while waiting for a diagnosis of an auto immune disorder.

I waited close to 10 years for a diagnosis of RA. Now for 6 years I have

been on meds and not gotten worse. I am one of the lucky ones whose disease

has not progressed because of progessive trmt from the beginning. I

considered seeing this doctor, who prescribes supplements for disease while

waiting for a diagnosis. Thankfully, my doctors talked me out it, because

they knew what this guy was doing and cashing in from desparate people. I

believe supplements, and eastern meds can help with traditional western meds

and trmt. PLEASE get more info and check it out with your own team of

medical care providers before trying this supplement. I considered not

posting but I think everyone should know about this. There are lots of

places one can go to get help with this disease. Call your local arthritis

foundation and see what they think of this supplement before ordering it.

[Guest guest]

Thank you for your post. I only inquired to the

article because I had not seen it. Having had this

disease for most of my life I am always a little

skeptical when it comes to " miracle " cures. I trust my

rheumy very much, we have a very good rapore, he

actually listens to what I have to say regarding my

treatment & sometimes lets me have my way even if he

does not agree with it. I guess just to let me know he

does not think he is God & isn't alway right either.

I'm glad you did post, its good to see that not

everyone thinks the same way.

God Bless you,

Barbara

--- Suzyq48449@... wrote:

> I have lived most of my life in the suburbs of

> Flint, MI. I read with

> interest the news story Carr did on Immunex.

> I recently moved from

> that area to Worcester, Mass area. I know that

> channel 12 news would not do

> a news story that they did not feel would be good

> for the community to know.

> But the first thing that came to my mind when I read

> this article in the RA

> digest was it is a supplement that a well known

> doctor in that area is

> selling as a treatment for RA in the area. This is a

> doctor that is not a

> rheumatologist but treats many patients in the area

> with autoimmune symptoms.

> There are not enough rheumatologists in that area to

> see all the patients

> that have autoimmune problems. I know because I

> lived there for 37 years of

> my life and only saw a rheum dr. 3-4 times a year.

> Family practioners handle

> the day to day care and flare care of autoimmune

> patients. This doctor that I

> am wondering if is hawking this new supplement is

> known for his questionable

> treatments. He does not take any forms of insurance

> and all his patients pay

> out of their pockets for his treatments. His

> practice is thriving because

> many people see him while waiting for a diagnosis of

> an auto immune disorder.

> I waited close to 10 years for a diagnosis of RA.

> Now for 6 years I have

> been on meds and not gotten worse. I am one of the

> lucky ones whose disease

> has not progressed because of progessive trmt from

> the beginning. I

> considered seeing this doctor, who prescribes

> supplements for disease while

> waiting for a diagnosis. Thankfully, my doctors

> talked me out it, because

> they knew what this guy was doing and cashing in

> from desparate people. I

> believe supplements, and eastern meds can help with

> traditional western meds

> and trmt. PLEASE get more info and check it out

> with your own team of

> medical care providers before trying this

> supplement. I considered not

> posting but I think everyone should know about this.

> There are lots of

> places one can go to get help with this disease.

> Call your local arthritis

> foundation and see what they think of this

> supplement before ordering it.

>

>

__________________________________________________

[Guest guest]

Suzy:

I like your style. It takes courage to step up to the plate with some real

personal advice for those of us who are RA patients and targets for those

doctors who are less than " pure of heart. " Thanks for the tip, but I too

depend on a specialist and have received cutting edge aggressive treatment

from the git-go and have stopped the progression and am pain free.

RA patients don't have a minute to waste on supplemental treatments, they

need to get to a specialist ASAP. If supplements prove helpful, then I'm

sure we'll hear about it from the specialist.

Best of health to you, Suzy!

Beatrice

>From: Suzyq48449@...

>Reply-Rheumatoid Arthritis

>Rheumatoid Arthritis

>Subject: Re: Digest Number 96

>Date: Mon, 12 Nov 2001 11:00:40 EST

>

>I have lived most of my life in the suburbs of Flint, MI. I read with

>interest the news story Carr did on Immunex. I recently moved from

>that area to Worcester, Mass area. I know that channel 12 news would not

>do

>a news story that they did not feel would be good for the community to

>know.

>But the first thing that came to my mind when I read this article in the RA

>digest was it is a supplement that a well known doctor in that area is

>selling as a treatment for RA in the area. This is a doctor that is not a

>rheumatologist but treats many patients in the area with autoimmune

>symptoms.

>There are not enough rheumatologists in that area to see all the patients

>that have autoimmune problems. I know because I lived there for 37 years of

>my life and only saw a rheum dr. 3-4 times a year. Family practioners

>handle

>the day to day care and flare care of autoimmune patients. This doctor that

>I

>am wondering if is hawking this new supplement is known for his

>questionable

>treatments. He does not take any forms of insurance and all his patients

>pay

>out of their pockets for his treatments. His practice is thriving because

>many people see him while waiting for a diagnosis of an auto immune

>disorder.

>I waited close to 10 years for a diagnosis of RA. Now for 6 years I have

>been on meds and not gotten worse. I am one of the lucky ones whose

>disease

>has not progressed because of progessive trmt from the beginning. I

>considered seeing this doctor, who prescribes supplements for disease while

>waiting for a diagnosis. Thankfully, my doctors talked me out it, because

>they knew what this guy was doing and cashing in from desparate people. I

>believe supplements, and eastern meds can help with traditional western

>meds

>and trmt. PLEASE get more info and check it out with your own team of

>medical care providers before trying this supplement. I considered not

>posting but I think everyone should know about this. There are lots of

>places one can go to get help with this disease. Call your local arthritis

>foundation and see what they think of this supplement before ordering it.

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Supplement hype and claims are the last, 'great', vast unregulated patent

medicine snakeoil system that is allowed by law. Cleverly, influential US

Senators from major supplement-producung states have actively de-coupled and

prohibuted FDA and other regulatory guidelines in re claims, etc. for this

industry. As a result, you can claim ANYTHING in the supplement sale, from

DHT blockage by herbs to cures for cancer from shark cartillage to RA

'cures' from Borosage oil, etc.,etc.

Jon W.

----- Original Message -----

From: " Beatrice L. Fleming " <ladibugs@...>

<Rheumatoid Arthritis >

Sent: Tuesday, November 13, 2001 2:12 PM

Subject: Re: Digest Number 96

> Suzy:

>

> I like your style. It takes courage to step up to the plate with some

real

> personal advice for those of us who are RA patients and targets for those

> doctors who are less than " pure of heart. " Thanks for the tip, but I too

> depend on a specialist and have received cutting edge aggressive treatment

> from the git-go and have stopped the progression and am pain free.

>

> RA patients don't have a minute to waste on supplemental treatments, they

> need to get to a specialist ASAP. If supplements prove helpful, then I'm

> sure we'll hear about it from the specialist.

>

> Best of health to you, Suzy!

>

> Beatrice

>

> >From: Suzyq48449@...

> >Reply-Rheumatoid Arthritis

> >Rheumatoid Arthritis

> >Subject: Re: Digest Number 96

> >Date: Mon, 12 Nov 2001 11:00:40 EST

> >

> >I have lived most of my life in the suburbs of Flint, MI. I read with

> >interest the news story Carr did on Immunex. I recently moved from

> >that area to Worcester, Mass area. I know that channel 12 news would

not

> >do

> >a news story that they did not feel would be good for the community to

> >know.

> >But the first thing that came to my mind when I read this article in the

RA

> >digest was it is a supplement that a well known doctor in that area is

> >selling as a treatment for RA in the area. This is a doctor that is not a

> >rheumatologist but treats many patients in the area with autoimmune

> >symptoms.

> >There are not enough rheumatologists in that area to see all the patients

> >that have autoimmune problems. I know because I lived there for 37 years

of

> >my life and only saw a rheum dr. 3-4 times a year. Family practioners

> >handle

> >the day to day care and flare care of autoimmune patients. This doctor

that

> >I

> >am wondering if is hawking this new supplement is known for his

> >questionable

> >treatments. He does not take any forms of insurance and all his patients

> >pay

> >out of their pockets for his treatments. His practice is thriving

because

> >many people see him while waiting for a diagnosis of an auto immune

> >disorder.

> >I waited close to 10 years for a diagnosis of RA. Now for 6 years I have

> >been on meds and not gotten worse. I am one of the lucky ones whose

> >disease

> >has not progressed because of progessive trmt from the beginning. I

> >considered seeing this doctor, who prescribes supplements for disease

while

> >waiting for a diagnosis. Thankfully, my doctors talked me out it,

because

> >they knew what this guy was doing and cashing in from desparate people.

I

> >believe supplements, and eastern meds can help with traditional western

> >meds

> >and trmt. PLEASE get more info and check it out with your own team of

> >medical care providers before trying this supplement. I considered not

> >posting but I think everyone should know about this. There are lots of

> >places one can go to get help with this disease. Call your local

arthritis

> >foundation and see what they think of this supplement before ordering it.

> >

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

>

>

>

>

[Guest guest]

Thank God Suzy spoke up. Because of her courage and knowledge level she will help many people. This is why I joined this support group. Thank you, Lin Vautrain,

[Guest guest]

Karla:

The word is being Positive. I followed what the group said and the doctor. I

pushed like I have never pushed before and so it goes. I walked three houses

today.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

yes, I would like to hear about new products!

Funny this email came today---I had a gluten nightmare last night (Does

anybody else get those?) Usually I dream that I eat something, and then

realize too late that it's glutinous. Last night, I dreamt I was in a

church, waiting for the free church supper. I was really hungry. By

the time I got to the serving area, there was nothing left

except...bread!

I have to stop going to bed hungry...

Lori

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

" I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it. "

---Elwood P. Dowd

[Guest guest]

Hi ,

There you go, off on another marathon trip! I am so sorry to hear you are not

able to participate. I have fond memories of your visit to the Rock and Roll

Marathon here in Phoenix. It must be a disappointment for you not to do the 1/2

marathon. I hope the blood clot clears up for you in fine fashion. That is a

bit scary!

When first diagnosed, it was May 5. I had school in Minnesota June 11-30. I

called ahead and got the name of a hospital and used the emergency room as my

weekly draw station while I was there. They faxed the results to my doctor and

of course, I could not hear the results until I was home, but at least my

Oncologist had my cell phone to leave any alarming results for me. Thank God he

never needed to. It worked pretty good. He just wrote up an order for the time

I was gone. I took the order into the draw nurse. They didn't even know I was

coming. I hope this helps. You might contact the organizers of the marathon for

the name of the closest hospital or place where you could do this. It might be a

good thing to contact them ahead of time and find out what they need you to do

also.

Good luck.

Barb in AZ

Message: 1

Date: Sat, 11 Jun 2005 17:18:40 -0500

From: " jennifer g " <jenniferg@...>

Subject: Gleevec & DVTs

Hi all,

For this one, I thought I'd turn to the list that's always so helpful.

:-)

I was diagnosed this week with a DVT -- deep vein thrombosis (blood

clot). I may also have thrown some smaller clot(s) to my lungs. I had a

rapid CT test on Friday but haven't gotten the results yet. As good as

this test is, it's not really able to pick up smaller clots. I have so

far declined an angiogram (the definitive test) because my treatment

wouldn't really change anyway. It's an uncomfortable, invasive procedure

and I just don't want to do it.

Now I'm on heparin and warfarin. I'm doing the heparin injections until

the warfarin starts working. Tonight will be my fifth night of heparin

injections. I know of at least one other of you other CMLers on

warfarin, but I don't recall the reason.

I have two issues now. One is the cause, as I don't have any risk

factors for DVT. Although I have a desk job, I am up *all* the time, so

that's not really a risk. I believe that DVT is listed as a rare side

effect of Gleevec. It would be odd for it to happen after 4.5 years on

the drug, though, and my vascular specialists and heme don't believe

that's the cause. Anyone hear anything about this potential link with

Gleevec at all?

The other issue is that I am traveling this week for 11 or so days in

Alaska. I was going to do the half-marathon for the Leukemia Society's

Team in Training, but my docs have said it wouldn't be safe for me to do

that, for a number of reasons related to this incident. The main problem

with the travel is that I'm not stabilized yet on the warfarin and will

have to get my blood checked while I'm traveling (not to mention that

little problem of traveling while having a DVT!). Through all my years

of CML, I have never gotten my blood tested while traveling. I know

others of you have.

So I'm wondering if you have tips for how to get your blood checked when

you're out of state and possibly in a remote location (within the US).

Have you tried to prearrange the tests with a clinic you know is in the

area? Did you have some sort of letter from your doc? Have you run into

hassles? What has made it easier for you? How easy was it to get your

results?

As always, I appreciate any advice you can offer!

jennifer g.

www.cmlsupport.com

[Guest guest]

Hi I also like Svetlana's work in that it emphasizes the natural way in which our bodies ultimately "know" these movement schemes BUT the connections were not quite formed. To start, have someone work the reflex with you, the caregiver. I find that once I show the parent what it is like they understand better how to work with their child AND they also get the benefit of feeling better Thank you for your everything you are doing. JOY Daphne wrote: There are 7 messages in this issue.Topics in this digest:1. Upcoming Dyslexic Classes for AdultsFrom: "Ann Farris" 2. Neurokinesiology exercise program options - new filesFrom: "valeriefreitas" 3.

Reflexes 1 course flyer - new fileFrom: "valeriefreitas" 4. Re: Exercise repetitions *BettyFrom: Freitas 5. RE: Reflexes 1 course flyer - new fileFrom: "mike polehna" 6. Re: Reflexes 1 course flyer - new fileFrom: Freitas 7. Re: Neurokinesiology exercise program options - new filesFrom: "Dee Dee Hornbeak" ________________________________________________________________________________________________________________________________________________Message: 1 Date: Fri, 24 Mar 2006 16:42:25 -0800From: "Ann Farris" Subject: Upcoming Dyslexic Classes for AdultsDyslexiaA different perspectiveFree Introductory Sessions East Bay:Date: Monday, April 10th at 7:00 pm Place: Women's Health

Center1676 N. California BlvdWalnut Creek, CAFree SessionThis uplifting informative class presented by a dyslexic, Ann Farris, explores new research and shares personal experiences about dyslexia. Series of Five Classes for Adult (age 16+) DyslexicsDates: Thursdays: May 11, 18, 25, June 1, June 8Time: 6:30-8:45 p.m.Place: Women's Health Center1676 N. California BlvdWalnut Creek, CACost: $145 for five classes To register call 925 941-7900, option 3This class is for dyslexics or those who feel they have dyslexia. In afriendly, interactive atmosphere, Ann Farris, author and dyslexic, willdiscuss tools for managing dyslexia, such as diet, exercise, color, thesenses and more. These tools can minimize the emotional discomfort andconfusion that those with dyslexia often

experience.Ann Farris, author of The Other Side of Dyslexia, learned she was dyslexic when she was Director of the Opera-Musical Theater Programat the National Endowment for the Arts. This discovery gave her the impetus to learn more and change within herself whatever was necessaryto improve her quality of life. _______________________________________________________For more information call Ann Farris at 415 552 6330 or e-mail atann@... or visit http://www.dyslexiadiscovery.comIf you do not wish to receive any further e-mails please type unsubscribein the Subject box and return to ann@...[This message contained attachments]________________________________________________________________________________________________________________________________________________Message: 2 Date: Sat, 25 Mar 2006

07:11:05 -0000From: "valeriefreitas" Subject: Neurokinesiology exercise program options - new filesI've added two files in a Neurokinesiology Exercise Programs folder in our group's Files section off the home page. The neurokinesiology program options file lists three ways you can begin a program. I'll include the base list here:1. Follow the home program given by Svetlana after a private session2. Sequence for reflex work in manuals3. Work on group of reflexes according to child's challengeThe second file is the reflexes by challenge chart that is from Svetlana's Children with Challenges class. It shows the top group of reflexes that were found to be non-integrated for children of various challenges, e.g. Agression, Autism, Cerebral Palsy, etc.If you'd like to get started working with a child, these files can help you get started with the manual until you are able to take a

course or have your child treated by Svetlana.These files can also be used to help you start a practice group in your area, more on that to come...Val________________________________________________________________________________________________________________________________________________Message: 3 Date: Sat, 25 Mar 2006 07:24:00 -0000From: "valeriefreitas" Subject: Reflexes 1 course flyer - new fileI've uploaded the course flyer that we used for the Reflexes 1 course in San Francisco last month into the Files section.The flyer might be useful as an informational sheet to those who want to have a handout to give to friends or family to explain the program.Also, for those of you sponsoring courses, if you're interested in using a premade flyer for the Reflexes 1 course, you can use it as a ready-made template. It was drafted with the

intention of explaining to potential registrants the importance of reflexes, providing examples of non-integrated reflex consequences, and listing benefits of the course/program and providing a bio on Svetlana. I think its useful for parents or others who are unfamiliar with reflexes and need to know why this course is important for them. I've uploaded the MS Word document and the last page is about the details on the information meetings we held prior to the class and a registration form which I edited and made generic.If you're sponsoring a course, also could you please download the Children with Challenges Group Flyer which describes the group and how to join and distribute these to your class.Thanks,Val________________________________________________________________________________________________________________________________________________Message: 4 Date: Sat, 25 Mar

2006 00:36:20 -0800From: Freitas Subject: Re: Exercise repetitions *BettyHi Betty,In the file on program options that I posted in the group's File section, I've included a note based on my course notes regarding frequency, etc. (if anyone has something different in their notes, please let me know). I hope Svetlana will have a chance to confirm if necessary.Note: Exercises are conducted as instructed in the home program given by Svetlana or in the following manner. Select from one to three reflexes to work on, but not more than three, as to not overwhelm the brain's need to process these activities. Complete the repatterning activities for the (up to three) selected reflexes until integrated, or for three days, and then you can select new reflex patterns to work with. Alternatively, you can work the selected reflexes three times per week, if you are unable to work on them

daily. You can conduct balances once per week or month.I think every child differs as to how much they need to repeat a reflex exercise and each reflex could differ within one child. One of the things I really like about Svetlana's method is that it provides parents a "tool kit" that they then can apply according to the child's need. The Integrating Dynamic and Postural Reflexes course manual really provides you the knowledge to identify which reflexes aren't integrated in your child and then how to integrate them.As Svetlana once said in class, she doesn't want clients to have to continually return, she wants their bodies to take over responsibility for their own development. So, you may just have to work on a reflex once and then its integrated or you may have to work on it for awhile more depending on the child or their life circumstances. By that I mean that since a person may anchor or switch off a reflex in times

of stress or trauma, you may have to come back to that reflex and come back for a "tune up" or it may be a different reflex that gets anchored, but you can have confidence in knowing that you have the tools to address it.Well, I hope that helps. That's just my opinion, but I'm not an instructor or anything, so if someone wants to add their take on it, please do.ValAshlin, Betty wrote:I have not taken one of Svetlana courses, but I have the manual and have been guided through it by a friend. I was wondering once the reflex is integrated into the body do I have to continue doing the reflex on the child or do I have to complete the exercise more than once on the child?Thanks,Betty[This message contained attachments]________________________________________________________________________________________________________________________________________________Message: 5

Date: Sat, 25 Mar 2006 07:44:59 -0600From: "mike polehna" Subject: RE: Reflexes 1 course flyer - new file;Thanks for all your work on this group site. I'm not able to open the newfile. thanks Joni-----Original Message-----From: [mailto: ] On Behalf Of valeriefreitasSent: Saturday, March 25, 2006 1:24 AM Subject: Reflexes 1 course flyer - new fileI've uploaded the course flyer that we used for the Reflexes 1 course in San Francisco last month into the Files section.The flyer might be useful as an informational sheet to those who want to have a handout to give to friends or family to explain the program.Also, for those of you sponsoring courses, if you're interested in using a premade flyer for the Reflexes 1 course, you can

use it as a ready-made template. It was drafted with the intention of explaining to potential registrants the importance of reflexes, providing examples of non-integrated reflex consequences, and listing benefits of the course/program and providing a bio on Svetlana. I think its useful for parents or others who are unfamiliar with reflexes and need to know why this course is important for them. I've uploaded the MS Word document and the last page is about the details on the information meetings we held prior to the class and a registration form which I edited and made generic.If you're sponsoring a course, also could you please download the Children with Challenges Group Flyer which describes the group and how to join and distribute these to your class.Thanks,Val