Genetic testing

[Guest guest]

what a beautiful child!

Trish

> has a web page if you want to take a look:

>

http://lesleyd720.homestead.com/home.html

>

> Lesley

[Guest guest]

> Shara,

> My daughter was originally diagnosed with Cerebral Palsy and then

autistic

> stuff cropped up. We were sent to a specialist in autism who

referred us to

> a geneticist who is now testing my daughter for various metabolic

and genetic

> possibilities. This consists of blood and urine testing so far.

Slowly, we are

> focusing in on Rett Syndrome or Angelman Syndrome although the

genetic

> testing so far is negative. Of course, along the way, any other

thing might

> show up in the testing. Like you, I feel the need to know what

has, as

> there can be physical problems that I would need to know about.

Also, some

> syndromes or metabolic issues do shorten lifespans. Also, her

brothers would

> benefit from knowing when planning their families. It is a long

road, all this

> testing, but worth it. Of course, the invasiveness of the testing

is a consideration,

> but bloodwork and urines aren't all that bad.

> has a web page if you want to take a look:

>

http://lesleyd720.homestead.com/home.html

>

> Lesley

Lesley,

Thanks so much for the information. I'm hoping our doctor orders the

tests next week. I was hoping that the tests would tell us something

right away, one way or the other. But it sounds like it may not be

that simple. I hope everything works out o.k. for and the rest

of your family. 's web page was great and you have a beautiful

little girl.

Shara

[Guest guest]

Hi.. my daughter is 8 and we did go through gentic testing when she

was initally diagnosed just to rule out Fragile X and have some

metabolic screens run. They also looked at a few genes that were

making headlines at the time but nothing was found. I think they

know so little about it, genetically speaking, at this point that

basically you are just ruling things out, but I am all for that.

When we went the visit consisted of a blood draw, urine sample, and

quick get to know you with the doctor.

Lyn

[Guest guest]

Hi there, I have a 4 year old daughter with Autism. I live in Canada as

well, when my daughter was first diagnosed I also went to the doctor in

which we had her blood checked to make sure that she did not have Fragile x

or Rhett disorder. Otherwise as of yet they have not scientifically

discovered the gene for Autism or pdd. Hopefully they will soon. .

genetic testing

> I am a new member to this list. I have a 5 year old HFA daughter. I

> am considering going to a geneticist to see if my daughter's autism

> has a genetic origin. Has anyone else done this? I live in Canada

> and there are no DAN doctors in our area. If your family has been

> through this procedure, I'd appreciate hearing from you!

> Anne

>

>

>

>

>

>

[Guest guest]

www.autismresearch.ca/ Hope this helps. .

genetic testing

>

>

> > I am a new member to this list. I have a 5 year old HFA daughter. I

> > am considering going to a geneticist to see if my daughter's autism

> > has a genetic origin. Has anyone else done this? I live in Canada

> > and there are no DAN doctors in our area. If your family has been

> > through this procedure, I'd appreciate hearing from you!

> > Anne

> >

> >

> >

> >

> >

> >

[Guest guest]

In a message dated 5/5/02 11:11:23 AM Pacific Daylight Time,

statement65@... writes:

> . I

> am considering going to a geneticist to see if my daughter's autism

> has a genetic origin. Has anyone else done this?

Dear Anne,

My 9yo granddaughter Kayla has autism and she has a 2q chromosome deletion.

She had the genetic tests before she was a year old. The doctor's really

couldn't come up with a diagnosis, so genetic tests were run. This is when

they discovered that she has a chromosome deletion.

Our family genetic history is going to be studied by the University of

Washington. They were very interested in Kayla because the 2q chromosome

deletion is very rare.

I also have 3 grandsons with a 11q chromosome deletion. They are 7, 6, and

1.

So far, they are not showing signs of autism.

Please feel free to ask any questions that you may have. I will TRY to

answer them if I can. I am not a genetic expert by any means............just

a grandmother trying to find out as much as I can to help my grandchildren.

Beth

[Guest guest]

hi,

we did genetic testing.

especialy because am autistic (am the mom), daughter is autistic, and son is

also.

(3 in one family!)

we went to " ongwanada " in kingston ontario.

it is covered by ohip (our provincial health insurance)

the geneticst there is dr. cyntia forst-gibson.

ongwanada has a website, just search it in your search engine. google finds it.

there is not yet a gene for autism, but they ruled out fragile X, and some other

" crania..somethingsomething " sorry just do not recal the name of it, but it is

something to do with the bones in skull fusing too quickly and apparently gives

also some heart problems.

hope some of it helps.

at least if going to kingston is not possible, maybe by email they can offer

some suggestions on where else to go.

there is canadas leading researcher in genetics of autism there.

dr. jeannette holden.

she has just received several million dollars to do 5 different research studies

on autism in canada.

perhaps thorugh participating in one of more of them you also could get someof

these tests done,.

talked with her at length about these studies when lived in kingston and she is

very interested in autism.

she has autistic brother who is in his 40's

he was not diagnosed autistic until about age 36.

very nice woman.

the geneticst is also.

minna

" The Doctor of the future will give No Medicine, but will interest his

patients in the care of the human frame, in diet, and in the cause and

prevention of disease. " .-Attributed to Alva Edisonn

" Our lives begin to end the day we become silent about things that matter "

Dr. Luther King, Jr

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[Guest guest]

Hi Anne

Welcome to the group. I too live in Canada and have a9 autistic

daughter. I have never had the genetic testing done so cannot help you

there. I just wanted to say hi and welcome.

Tracey

statement65 wrote:

> I am a new member to this list. I have a 5 year old HFA daughter. I

>

> am considering going to a geneticist to see if my daughter's autism

> has a genetic origin. Has anyone else done this? I live in Canada

> and there are no DAN doctors in our area. If your family has been

> through this procedure, I'd appreciate hearing from you!

> Anne

>

>

>

[Guest guest]

Hello ILOVEmySONshine!

Just wanted to say that I hope that things go the way you need them to and you are in my prayers. God Bless! ILOVEmySONshine@... wrote:

Yesterday my son went and had his blood drawn for genetic testing...It tested for Metabolic Disorders and Syndromes-Chromosomal Defects, ect. ...To my suprise the DR indicated to me contrary to what my son's developmental pediatrician's office said that they are more common than thought to be in response to my question about 'I know that these other things may be rare but I want to know and rule them out'...He actually had said that he had diagnosed a child with Fragile X the other day and a child with Angelman Syndrome a few weeks ago...Saying about one or another of them that he diagnosis about 30 times per year....But I had also read that in children diagnosed beforehand with autism that only 4 percent are diagnosed with somethingelse when tested.Anyway, after wondering for a long time whether or not it could be somethingelse I

finally decided to have the testing done.I'm just hoping that either we will eliminate other things or use what we find to help my son.Anyway, we will find out the results in a few weeks.__________________________________________________

[Guest guest]

Hi,

I just wanted to mention that the genetic testing isn't a big deal for

the kids at all. It can either be done by a cheek swab or a blood draw.

Maddie had hers done by cheek swab. But I know the blood draw is not

much.

She gets blood drawn all the time for another condition she has and

it's only 1 tube I think.

Maddie has had light sensitivity when she has fevers but I don't think

she has had pain in her eyes.

She has a lot of leg pain though. Mostly her knees.

I wish you the best of luck and fever free days.

Tracey

mom to Maddie, age 5

Brent, age 9

League city, TX

On Tuesday, February 8, 2005, at 10:10 AM, galaxygaljsv wrote:

>

> Hi ,

> No, we have not had any genetic testing done.  In the 2 1/2 years

> (when fevers first started) we have not had very much done at all. 

> We are seeing a specialist at Children's Mercy (Kansas City,MO) but

> any beneficial information has been received from this website and

> not by the doctor visits.  The only other thing that the doctor

> mentioned that it might be is JRA but she said she wasn't ready to

> explore that route just yet.  She also said that she wasn't ready to

> say that it is either.  Our visits consisted of them ruling

> out Leukemia, putting him on cimetidine and then nothing.  The

> cimetidine helps-it even cut out the fevers for several months but

> then the doctor had me wean his dosage down and they came back. I

> have increased the dosage again and now fevers less intense and

> occasionally skip a month.  The doctor told me to wean him off again

> after I increased the dosage  but I have not-I just haven't been

> back to the doctor at all.  I really don't want to take him off of

> the cimetidine-I feel like we would just be back where we started. 

> When I asked why I need to wean him off again so soon she didn't

> really have an answer.  She(the doctor) said she has dealt with

> many times and once the fever is stopped by cimetidine you can

> take them off of it and it is over.  But that has not been my

> experience and from what I read here that has not been very many

> others experience either.

> I have been reading some of the post about genetic testing but

> haven't decided to call about it because-well to be honest I just

> hate to put him through it-I don't know how much of a guinea pig the

> test would make him.

>   I really believe that it eye problems are associated with the

> but it is nothing that I can prove-just what I believe in my

> heart.

> Any advice is appreciated!  I have seen that some of the best info

> comes from people that are going through the same process themselves.

>

> Sincerely,

> Janet Vail

>

>

>

>

<image.tiff>

>

>

<image.tiff>

>

>

[Guest guest]

I can only suggest maybe calling the MDA and they should be able to lead you

where you need to go in your area for the genetic counceling and all. I do know

the tests aren't cheap. I had to pay I think $300 just for Ians test to say he

does have SMA.

I hope that helped you some.

Missy

<childcaregirl01@...> wrote:

Can someone tell me how to go about getting genetic testing and

counseling? Does MDA provide this for people in relationships

involving MD? We have been informed that insurance won't pay for it. I

would like more information before my bf and I even consider the

possibiblty of a family in the future. I know the time isn't right

right now anyway, but for in the future, I would like to make sure I

am not a carrier of something. Thanks.

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[Guest guest]

You can appeal that insurance decision. If you present it to them in a form that

best suits their interests, aka " the bottom line " , they will more than likely

pay for you to have SMA carrier testing. Basically, if you present them with

the amount that they would most likely pay over the years for a child who does

have SMA and then the amount they could pay to find out if you are a carrier

they will see that they get off much cheaper by paying for the carrier testing.

I know this sounds harsh, but it's the reality of insurance. They'd rather go

the cheaper route anytime!

Hugs

Jeni

<childcaregirl01@...> wrote:

Can someone tell me how to go about getting genetic testing and

counseling? Does MDA provide this for people in relationships

involving MD? We have been informed that insurance won't pay for it. I

would like more information before my bf and I even consider the

possibiblty of a family in the future. I know the time isn't right

right now anyway, but for in the future, I would like to make sure I

am not a carrier of something. Thanks.

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

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[Guest guest]

: The carrier test for SMA cost is in the @ to

$250 to $450 range I believe. This does not include

the cost of a visit with a Neurologist or Genetic

Counselor. To my knowledge the Insurance Bastards

don't cover the cost of the test. Not sure if MDA

provides counseling, but they just might - MDA,

despite the oppinions of many, is a very good

organization that has done a lot more for SMA than

most would think...Mitch

--- <childcaregirl01@...> wrote:

> Can someone tell me how to go about getting genetic

> testing and

> counseling? Does MDA provide this for people in

> relationships

> involving MD? We have been informed that insurance

> won't pay for it. I

> would like more information before my bf and I even

> consider the

> possibiblty of a family in the future. I know the

> time isn't right

> right now anyway, but for in the future, I would

> like to make sure I

> am not a carrier of something. Thanks.

>

>

>

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[Guest guest]

Hi, Sue.

One of the main drivers for the study of genetic variations is that

it is recognized that people respond differently to drugs, depending

on which ones they have. I suspect that the pressure is coming from

the FDA to evaluate these connections, so the drug companies are

putting money into it. The " one size fits all " approach to drugs

contributes to the large number of fatalities from the use of drugs.

Rich

>

> There's lots of interesting detail in this San Francisco

Chronicle

> called " New age of medicine: Treatment tailored to your DNA,

enzymes. "

>

> The article says that " About 40 of the 50 psychiatrists at the

Mayo

> Clinic use genetic tests to help choose which drugs to prescribe,

said

> Dr. A. Mrazek, chairman of psychiatry at Mayo. "

>

> But most doctors are resistant to this testing. For example,

> " ...Recently, when she had an emergency appendectomy, she advised

the

> doctors to use a low dose of anesthesia based on her genetic test

> results. 'My husband had to go home in the middle of the night to

get

> the material, bring it back and make it clear to them that this

was an

> important issue,' she said.

>

> This might interest Rich: " Since June, the label for Camptosar,

a

> Pfizer drug for colon cancer, has advised doctors that a lower

starting

> dose may be appropriate for the 10 percent of people who have a

> particular version of a gene called UGT1A1. The variant makes them

more

> prone to a side effect: a serious decline in white blood cells. "

>

> http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/11/13/

> MNGD5FLESA1.DTL

> =================================

> Some companies are now offering testing directly to consumers, so

I

> googled around and found this: " ...the idea that people who have

> 'chronic conditions' are likely to benefit from genetic testing

is

> preposterous. If you noticed which words are in quotes, maybe you

can

> guess which website the quote is from:

>

>

http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/genomics.html

>

> Quackwatch seemed particularly hard on a lab that many on this

list

> have used: Great Smokies Diagnostic Laboratory (GSDL), of of

> Asheville, North Carolina, claims that its Genovations test line

> " empowers physicians and patients to realize earlier, more

effective

> preventive interventions -- years before disease develops;

precise,

> customized therapies that truly address each individual's needs;

and

> improved clinical insight into patients with treatment-resistant

> 'chronic' conditions. " Again, note the quotes around chronic.

> ==========================

>

> Here's a website that may have a more balanced view of DNA

testing,

> with basic information:

>

> http://www.geneclinics.org/

>

> Sue ,

> Upstate New York

>

[Guest guest]

Whoops. I meant April not November. Not sure what I was thinking!

>

> Just had a talk with an autism-oriented pediatrician who has a

> Californi and New Jersey state license and will be coming to do a New

> Jersey outreach in November. She feels Yasko is the best at

> interpreting the genetic picture. In terms of saliva or blood,

> apparently testing4health is going to switch to blood spot soon

> because many folks in Europe are asking to be tested. I will check

> this out. Also the organic acids test from Great Plains Lab is

> obviously important.

>

> I guess testing4health is the one I can get now in NY State, but this

> doc is coming to New Jersey and she is willing to see me. We also had

> a nice, if somewhat brief, but fascinating, talk about the autistic

> kids. She has seen kids who had diarrhea for a year or two, and no

> pediatrician ever did a stool test on them to see what the pathogen was.

>

[Guest guest]

Jill,

Who is this doctor and how can I get an appt? Please contact me directly if

you feel that's necessary.

Frustrated in New York,

Ellen

> I guess testing4health is the one I can get now in NY State, but this

> doc is coming to New Jersey and she is willing to see me. We also had

> a nice, if somewhat brief, but fascinating, talk about the autistic

> kids. She has seen kids who had diarrhea for a year or two, and no

> pediatrician ever did a stool test on them to see what the pathogen was.

>

>

[Guest guest]

What is the sample for these tests? Saliva? So no dr's lab slip is necessary?

I notice that some of the panels have more SNPs that are tested for one 'gene'

(I hope I am using the correct term), such as one or two SNPs for CBS. Is having

more SNPs tested necessarily better? Does it provide needed info for treatment,

or more precision in pinpointing what is amiss? thank you, les PS: Is the

narrative explanation that is provided with the results very in-depth?

Genetic Testing

Just had a talk with an autism-oriented pediatrician who has a

Californi and New Jersey state license and will be coming to do a New

Jersey outreach in November. She feels Yasko is the best at

interpreting the genetic picture. In terms of saliva or blood,

apparently testing4health is going to switch to blood spot soon

because many folks in Europe are asking to be tested. I will check

this out. Also the organic acids test from Great Plains Lab is

obviously important.

I guess testing4health is the one I can get now in NY State, but this

doc is coming to New Jersey and she is willing to see me. We also had

a nice, if somewhat brief, but fascinating, talk about the autistic

kids. She has seen kids who had diarrhea for a year or two, and no

pediatrician ever did a stool test on them to see what the pathogen was.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hey, feel free to email me privately.

>

> Jill,

>

> Who is this doctor and how can I get an appt? Please contact me

directly if

> you feel that's necessary.

>

> Frustrated in New York,

> Ellen

>

> > I guess testing4health is the one I can get now in NY State, but this

> > doc is coming to New Jersey and she is willing to see me. We also had

> > a nice, if somewhat brief, but fascinating, talk about the autistic

> > kids. She has seen kids who had diarrhea for a year or two, and no

> > pediatrician ever did a stool test on them to see what the

pathogen was.

> >

> >

>

[Guest guest]

The whole point of me going to this doctor IS to get a dr's lab slip.

I don't know the answer to your other questions. Sorry!

>

> What is the sample for these tests? Saliva? So no dr's lab slip is

necessary?

> I notice that some of the panels have more SNPs that are tested for

one 'gene' (I hope I am using the correct term), such as one or two

SNPs for CBS. Is having more SNPs tested necessarily better? Does it

provide needed info for treatment, or more precision in pinpointing

what is amiss? thank you, les PS: Is the narrative explanation that

is provided with the results very in-depth?

> Genetic Testing

>

>

> Just had a talk with an autism-oriented pediatrician who has a

> Californi and New Jersey state license and will be coming to do a New

> Jersey outreach in November. She feels Yasko is the best at

> interpreting the genetic picture. In terms of saliva or blood,

> apparently testing4health is going to switch to blood spot soon

> because many folks in Europe are asking to be tested. I will check

> this out. Also the organic acids test from Great Plains Lab is

> obviously important.

>

> I guess testing4health is the one I can get now in NY State, but this

> doc is coming to New Jersey and she is willing to see me. We also had

> a nice, if somewhat brief, but fascinating, talk about the autistic

> kids. She has seen kids who had diarrhea for a year or two, and no

> pediatrician ever did a stool test on them to see what the

pathogen was.

>

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested in

any treatment discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

I had suspected that this might be the case; however, their website does not

indicate that a slip, or any type of dr's involvement, is necessary; seems like

the test can be ordered, and results sent, straight to the patient. This is what

surprised me.

Also, when I read that testing4health was going to SWITCH to blood spot soon, it

made me wonder if some other 'medium' was being used presently, other than

blood.

Thank you for the clarification. Les

Genetic Testing

>

>

> Just had a talk with an autism-oriented pediatrician who has a

> Californi and New Jersey state license and will be coming to do a New

> Jersey outreach in November. She feels Yasko is the best at

> interpreting the genetic picture. In terms of saliva or blood,

> apparently testing4health is going to switch to blood spot soon

> because many folks in Europe are asking to be tested. I will check

> this out. Also the organic acids test from Great Plains Lab is

> obviously important.

>

> I guess testing4health is the one I can get now in NY State, but this

> doc is coming to New Jersey and she is willing to see me. We also had

> a nice, if somewhat brief, but fascinating, talk about the autistic

> kids. She has seen kids who had diarrhea for a year or two, and no

> pediatrician ever did a stool test on them to see what the

pathogen was.

>

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested in

any treatment discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

Saliva swab is being used now, but that degrades over time. I assume

it takes time to get here from parts of Europe which is why they may

be switching.

> >

> > What is the sample for these tests? Saliva? So no dr's lab slip is

> necessary?

> > I notice that some of the panels have more SNPs that are tested for

> one 'gene' (I hope I am using the correct term), such as one or two

> SNPs for CBS. Is having more SNPs tested necessarily better? Does it

> provide needed info for treatment, or more precision in pinpointing

> what is amiss? thank you, les PS: Is the narrative explanation that

> is provided with the results very in-depth?

> > Genetic Testing

> >

> >

> > Just had a talk with an autism-oriented pediatrician who has a

> > Californi and New Jersey state license and will be coming to

do a New

> > Jersey outreach in November. She feels Yasko is the best at

> > interpreting the genetic picture. In terms of saliva or blood,

> > apparently testing4health is going to switch to blood spot soon

> > because many folks in Europe are asking to be tested. I will check

> > this out. Also the organic acids test from Great Plains Lab is

> > obviously important.

> >

> > I guess testing4health is the one I can get now in NY State,

but this

> > doc is coming to New Jersey and she is willing to see me. We

also had

> > a nice, if somewhat brief, but fascinating, talk about the

autistic

> > kids. She has seen kids who had diarrhea for a year or two, and no

> > pediatrician ever did a stool test on them to see what the

> pathogen was.

> >

> >

> >

> >

> >

> >

> > This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are interested in

> any treatment discussed here, please consult your doctor.

> >

> >

> >

> >

[Guest guest]

Hi, Katrina.

***I think these are very valid concerns.

>

>

>

> Have those who are being tested and excited about being tested,

studied the field of genetics?

>

> Issues such as

> Your genetics being on record...and implications of that.

Employment, Govt. Child-bearing, etc

***It's hard to know at this point how that will shake out. People

certainly have the right to privacy about their genetics, but if

they choose to make them public, they are free to do so. We are

currently looking at an extremely small part of the total genome.

The entire human genome is estimated to code for perhaps 35,000

genes. Within these genes, it is now estimated that there are

perhaps 10 million different SNPs. Looking at 20 SNPs in a small

number of genes is kind of a drop in the bucket by comparison,

though the ones being looked at appear to be very important for CFS.

>

> Tailor made pharmaceuticals...with all of the corruption and

damage of drugs already?

***As I think you know, I am not big on use of pharmaceuticals,

except when really necessary. But I think the use of

pharmacogenetics will actually be beneficial in decreasing the

number of deaths and deleterious responses to pharmaceuticals as a

result of genetic diffences. I think that liability issues will

drive the drug companies and the doctors in that direction.

>

> Mandatory drugging, based on genetics?

***I hope not. There is mandatory drugging going on in mental

institutions now, I think. But for people who haven't been declared

incompetent, I don't think this is going to happen, regardless of

knowledge of genetics.

>

> All of the uncertainties at this stage, according to geneticists,

themselves?

***Yes, there is uncertainty, and we do have to take things

carefully.

>

> Quality control of the labs

***This is very important. I will say that in cases where people

have sent me SNP testing results from different labs and I have

compared the same SNPs from the different labs, I have yet to see a

discrepancy. I think this type of testing can be done pretty

accurately.

>

> Unscrupulous labs, testing, rip-offs, etc being reported?

***So far, I haven't seen this in the labs characterizing SNPs.

>

> What about what's going on with all of the other bunches of

thousands? of your genes? How does that relate to messing with a few

of them?

***A very good question. There's a lot to be learned about this. I

think we have to approach it at present from the biochemistry side.

By looking at the abnormalities in the biochemistry, we can infer

which genes might be important, and then look specifically at them.

This is what is currently going on. As the technology of gene chips

and computer-automated analysis gets more advanced, it will be more

practical to look at larger numbers of SNPs and let the computer

figure out which ones are important in different disorders. I have

no doubt that this kind of thing is now going on, too.

>

> What is the time frame of the cure you are talking about?

***I don't know for sure. It certainly isn't overnight. I think we

have to have some to look at before we can say for sure.

>

> These issues so prevalent in gene discussions elsewhere...

>

> And related issues which have always been so closely scrutinized

here...

>

> Not understanding total absence here...

***I'm glad you're bringing them up. They should be considered.

>

> I Don't remember Rich's answer, except that he's using the

list/members as his laboratory, for his theories, but what about the

rest of you?

***I hope that everyone is going into this with their eyes open. We

are doing things that haven't been done before in CFS, as far as I

know. The main downside appears to be the financial cost. The

treatments are primarily food supplements and/or herbs. It is

possible for some people to react to these treatments, but I think

the risk of negative effects is much smaller with these

orthomolecular substances than with pharmaceuticals. But you're

right, everyone should be aware that this is experimental, and no

one should feel coerced into trying anything they don't feel

comfortable trying.

>

> Katrina

>

***Rich

[Guest guest]

My answer is read, " The Biotech Century " by the esteemed Rifkin for a

superb exploration of these issues and a very serious warning to humanity

included. Indeed, there is reason for concern. I think also of Michel

Foucault's many works but mainly the theme he takes up over and over again of

power/knowledge. Something like: power knowledge relations not simply the

modernist worldview version " Knowledge is power " [was it Bacon who said that?].

The " epistemo-juridical " , the " objectifying gaze " of science; the Panopticon's

significance. Or Goldstein has simply stated, " the medico-legal implications of

prescribing cannabinoids...otherwise he'd prescribe them far more often " .

again sorry for the disjointed 'discourse'. BTW Foucault is very challenging

reading but worth it.

Always,

--

Hud J Oetoyo

Genetic Testing

Have those who are being tested and excited about being tested, studied the

field of genetics?

Issues such as

Your genetics being on record...and implications of that. Employment, Govt.

Child-bearing, etc

Tailor made pharmaceuticals...with all of the corruption and damage of drugs

already?

Mandatory drugging, based on genetics?

All of the uncertainties at this stage, according to geneticists, themselves?

Qualty control of the labs

Unscrupulous labs, testing, rip-offs, etc being reported?

What about what's going on with all of the other bunches of thousands? of your

genes? How does that relate to messing with a few of them?

What is the time frame of the cure you are talking about?

These issues so prevalent in gene discussions elsewhere...

And related issues which have always been so closely scrutinized here...

Not understanding total absence here...

I Don't remember Rich's answer, except that he's using the list/members as his

laboratory, for his theories, but what about the rest of you?

Katrina

[Guest guest]

Hello,

Are sympetoms the same with fmf and traps, is it the same as .

Maybe I will check online for that? LOL.. Any information you can

give me would be great. Good luck and thanks for the info.

Amy & Krystina 2 1/2 years.

>

> As I read the stories every day I can't help to think........all

of these kids diagnosed with like just by symptoms and

a few blood test. For years I have not been satisfied with the

diagnosis like a lot of families. It was on this site that I learned

about genetic testing. One thing this pediatric ID Dr. at children's

hosp. said was until now they didn't have the ability to test and

now they do and that some of the kids she saw and had diagnosed with

she now knows they have fmf or traps etc.......so what I am

saying is, if I had to do this all over with as young as

these kids and with the knowledge of testing.......I would genetic

test first before accepting any diagnosis of ......We are still

waiting for test results for . I called on Friday hoping they

would be back after 4 weeks but, they weren't. I will call on

Tuesday and hope to get the results. Thanks for listening, Gretchen

and 13

>

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

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

I spoke to several moms in here and was told it can be anywhere from a blood

test to also a skin biopsy for testing. Of course I am sure someone can

elaborate more, but this is what I got from talking to several moms here.

Tracey

Genetic Testing

Hi,

I have a question about what parents have experienced for genetic

testing such as Marfans Syndrome.

Max will be 2 years next month. All of his docs have recommended

genetic testing. We have now decided this is something we would like

to do.

Does anyone know what is included in this test. Max is an active 2

year old. I am concerned he won't sit still for the necessary

measurements.

Any thoughts?

Thank you,

Aekta