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Hi Q, I was told by several MD's that my problem was FMS and

was prescribed pain meds and SSRI's for 2 1/2 years. In spite of

my testing positive for LD, these MD's still insist that I couldn't

have it and will not prescribe antibiotics. They have admitted my

case is puzzling, I have found another MD. I've been told that,

statisticly, difficult patients live longer. Take care in Michigan, it

sounds like you're on the right track.--Cam

P.S. I'd like to tell you that I got away clean but I didn't. They left

me with a shadow of a doubt. " We can't fix you so nobody can so

you will just have to learn to live with it " sort of stuff. In return I

email them my progress notes.

Even though I haven't met with him, a very good LLMD in Boston

has been very willing to collaborate with my present MD. This

has also helped keep my Vermont insurance people happier.

> Did any of you go through a tough time with your diagnosis?

> was anyone diagnosed with fibromyalgia initially? is there

anything

> else I should know? thanks, qscholar.

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Guest guest

Hi!

Diagnosis of fibromyalgia and depression...yes, even though my son was only

13 at the time. We also were told he was suffering from: Crohn's disease,

irritable bowel, juvenile rheumatoid arthritis, " growing pains " , pleurisy to

explain the horrid chest pain, heat rash was the diagnosis to explain the

bizarre skin rashes, several different diagnoses for eye problems, one jerk

of a doctor said he just needed to " be tougher " and go off to school no

matter what, and that once he got to school he would " forget " about feeling

bad. All of this in spite of the fact that my son had suffered a KNOWN tick

bite, just as you described. But because we live in Ohio, no one would listen

to the fact that he'd been a vibrant, healthy boy prior to the tick bite.

" There's no Lyme Disease in Ohio, " we were told repeatedly.

I wish you luck with your new doctor. Thankfully you are now being

heard...and hopefully, helped!

--from a caring friend in Ohio,

--Judie

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  • 2 years later...
Guest guest

Hi Sandie,

There are some tips on repositioning in the files section under repositioning

headquarters.

Plagiocephaly/files/

Repositioning%20Headquarters/

As far as whether or not his face will become mishapen. I can't answer that one.

My

son had mild plagio and no torticollis... his face was not mishapen. It would

have

been much harder if he had had torticollis. From what I understand, a lot of

babies

with plagio and torticollis do develop some sort of facial asymmetry, BUT I am

NOT an

expert on this. Hopefully someone with a bit more experience in this area can

give

you better answers.

I strongly recommend checking out the link above as well as the other folders in

the

files and links sections. They contain a lot of great information. I wish I had

found

this site and checked it out sooner.

Good luck,

Sunnyvale, CA

plagio/brachy/starband (grad 4/05)

>

> Hi

> I am new my baby was born 2 months premature on Jan 2, 05 due to me

> having severe pre eclampsia. He weihed 3 pounds 5 ounces & weighs 10

> pounds now. He has plagiocephaly & tortecollis due to not being turned

> in the NICU. WE were told if we don't do a helmet his face will get

> mishapen too? Is this so? He had hydrocephalis and 2 grade 3 brai

> bleeds so I am not to keen on a helmet. Yet I don't want his face to

> get mishapen. During the waking hours I force him to lay on his left

> side & he hates it, but does it. At night ofcourse he sleeps on his

> right(bad side) and he sleeps 10-11 hours so that is a lot of time of

> hsi bad side.I do hsi therapy now as EI has not even contacted us yet

> dispite my calls to them. Any advice as to what stretches I can do and

> if the helmet is something we should get and most importantly if we

> don't do the helmet will his face get mishapen to?

> thanks

> sandie

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Hi Sandie,

Welcome to the group. Check out the files section. There is a folder on tort tips - it contains lots of stretches and strengthening ides for the enck muscles. It even has pics.

I'm not suprised he has plagio and tort. Preemies are very susceptible. Sometimes the equipment around them prevents them from being properly positioned or repositioned. However, since he was 2 months premature his adjusted age is younger and aggressive repo and neck therapy could really help a lot. Adjusted age he is only about 3 months which is the minium age for banding. I would start doing aggressive repo (check the files), at home stretching, and record his progress with photos. Discuss at his next well baby check. Take your photos and a Cranial Tech severity form (check the links section). Also, take the AAP guidelines for treating plagio (again see the links section).

If you did nothing it would probably get worse and affect his face. Hopefully the links I posted at the bottom will work - just click on the underlines sections.

mom to na

DOC Grad

South Carolina

www.thefilyaws.com

Torticollis Help Stretching tips and muscle location pics

Repositioning Headquarters Detailed repo strategies and information, photos of repo ideas from our group members, how to determine if your baby is a good candidate for repo, and more. Check out the Repositioning and Tummy Time folder in the Links section of the group for a lot more information on and products for repositioning.

Repositioning and Tummy Time Repositioning and Tummy Time products, studies, personal websites, and more. Also check the Files section/Repositioning Headquarters folder for detailed repositioning strategies and repositioning photos from our group members to help with developing a repo regimen for your baby.

AAP Releases American Academy of Pediatrics reports regarding plagiocephaly

Severity Assesment of Plagiocephaly Assessing the severity of plagiocephaly can be very subjective. In an attempt to standardize the classification of plagiocephaly, Cranial Technologies has developed assessment tools

Torticollis

peach97267 <peach97267@...> wrote:

HiI am new my baby was born 2 months premature on Jan 2, 05 due to me having severe pre eclampsia. He weihed 3 pounds 5 ounces & weighs 10 pounds now. He has plagiocephaly & tortecollis due to not being turned in the NICU. WE were told if we don't do a helmet his face will get mishapen too? Is this so? He had hydrocephalis and 2 grade 3 brai bleeds so I am not to keen on a helmet. Yet I don't want his face to get mishapen. During the waking hours I force him to lay on his left side & he hates it, but does it. At night ofcourse he sleeps on his right(bad side) and he sleeps 10-11 hours so that is a lot of time of hsi bad side.I do hsi therapy now as EI has not even contacted us yet dispite my calls to them. Any advice as to what stretches I can do and if the helmet is something we should get and most importantly if we

don't do the helmet will his face get mishapen to?thankssandieFor more plagio info

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Guest guest

Hi Sandie,

Welcome to the group. Check out the files section. There is a folder on tort tips - it contains lots of stretches and strengthening ides for the enck muscles. It even has pics.

I'm not suprised he has plagio and tort. Preemies are very susceptible. Sometimes the equipment around them prevents them from being properly positioned or repositioned. However, since he was 2 months premature his adjusted age is younger and aggressive repo and neck therapy could really help a lot. Adjusted age he is only about 3 months which is the minium age for banding. I would start doing aggressive repo (check the files), at home stretching, and record his progress with photos. Discuss at his next well baby check. Take your photos and a Cranial Tech severity form (check the links section). Also, take the AAP guidelines for treating plagio (again see the links section).

If you did nothing it would probably get worse and affect his face. Hopefully the links I posted at the bottom will work - just click on the underlines sections.

mom to na

DOC Grad

South Carolina

www.thefilyaws.com

Torticollis Help Stretching tips and muscle location pics

Repositioning Headquarters Detailed repo strategies and information, photos of repo ideas from our group members, how to determine if your baby is a good candidate for repo, and more. Check out the Repositioning and Tummy Time folder in the Links section of the group for a lot more information on and products for repositioning.

Repositioning and Tummy Time Repositioning and Tummy Time products, studies, personal websites, and more. Also check the Files section/Repositioning Headquarters folder for detailed repositioning strategies and repositioning photos from our group members to help with developing a repo regimen for your baby.

AAP Releases American Academy of Pediatrics reports regarding plagiocephaly

Severity Assesment of Plagiocephaly Assessing the severity of plagiocephaly can be very subjective. In an attempt to standardize the classification of plagiocephaly, Cranial Technologies has developed assessment tools

Torticollis

peach97267 <peach97267@...> wrote:

HiI am new my baby was born 2 months premature on Jan 2, 05 due to me having severe pre eclampsia. He weihed 3 pounds 5 ounces & weighs 10 pounds now. He has plagiocephaly & tortecollis due to not being turned in the NICU. WE were told if we don't do a helmet his face will get mishapen too? Is this so? He had hydrocephalis and 2 grade 3 brai bleeds so I am not to keen on a helmet. Yet I don't want his face to get mishapen. During the waking hours I force him to lay on his left side & he hates it, but does it. At night ofcourse he sleeps on his right(bad side) and he sleeps 10-11 hours so that is a lot of time of hsi bad side.I do hsi therapy now as EI has not even contacted us yet dispite my calls to them. Any advice as to what stretches I can do and if the helmet is something we should get and most importantly if we

don't do the helmet will his face get mishapen to?thankssandieFor more plagio info

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  • 1 year later...
Guest guest

Welcome I have an almost 4 yr old daughter with AS.

Tammie

( ) I am new

Hello I have a 7 year old daughter with asperger syndrome. She was

just diagnosed a few months ago.

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Hi. I suspect my daughters may have my condition of AS as a hereditary

issue, they do show some signs but are under control for the most part.

Unfortunately their Mother doesn't believe it is any kind of a factor.

So I can only stand by to help if it develops. Teenagers are a tough

lot to work with when it comes mental illness. I give you one place to

look up though, and I think you can still contact them. Girls and Boys

Towns of America. I have personal experience with them and vouch for

their skills 100%. You don't have to go to them to benefit from their

knowledge either. Just contact them, I think you can online, but my

comp is acting up.

Dave

>

> Hiya I am new to this group. I live in the UK and I have a 13 year

> old daughter with Aspergers.

>

> Things are really up and down with her and as she has now hit the

> teens things are kicking in.

>

> Would love to chat to other parents especially those with girls with

> AS.

>

>

> x

>

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Hi ,

welcome@@

I don't have girls, but I am one with A.S. *grin*

My boys are all A.S. and SOOO different from girls.

I hope you get a lot out of this group!

Enjoy

*smiles*

lisa b

>

> Hiya I am new to this group. I live in the UK and I have a 13 year

> old daughter with Aspergers.

>

> Things are really up and down with her and as she has now hit the

> teens things are kicking in.

>

> Would love to chat to other parents especially those with girls with

> AS.

>

>

> x

>

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welcome:)

I have three boys with A.S. and I am the only female in my house with

A.S. (with the exception of my cat. Well, ok, she has CATSPERGERS!)

HEHE

Post often:)

*smiles*

lisa b

>

> Hello I have a 7 year old daughter with asperger syndrome. She was

> just diagnosed a few months ago.

>

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  • 1 year later...
Guest guest

We were very pleased and surprised by the effects EFA/ omegas had on our

daughter adopted at 4 years of age and a non talker. I wish you all the

best and this site is a great source of info.

Roxanne

_____

From:

[mailto: ] On Behalf Of lisamlivingston

Sent: Thursday, April 24, 2008 9:49 PM

Subject: [ ] I am new

I adopted my now 3.9 year old when she was 2.4, with a lfe history of

social neglect (China's orphanages), corrected cleft palate and ear

infections that were severe and chronic in nature. She now has ear

tubes and can hear 100% - I sooooooooooooooooo want to hear her voice.

Does it ever happen?

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Guest guest

Absolutely. When you can't hear, you can pick up language " by osmosis "

like typical kids. It will take lots of speech therapy with a good

SLP, and, given the neglect, she may require nutritional/biomedical

interventions as well. Many of us here have greatly benefited from

fish oil and vitamin E supplementation. Some do carnitine and other

supplements, and some do dietary interventions. (e.g. What led her to

have chronic ear infections? It is often a food intolerance/allergy...)

My oldest son greatly benefited from fish oil, while it did nothing for

my youngest son. He started communicating with mB12 shots. Both are

dairy free. I also have two cousins who speak well despite having

cleft palate syndrome (one is also mildly hearing impaired). It takes

a bit of research and a lot of work, but I think you will get her

talking.

Does she make any sounds at all? Does she have any other health and

medical issues? Everything is connected...

in NJ

>

> I adopted my now 3.9 year old when she was 2.4, with a lfe history of

> social neglect (China's orphanages), corrected cleft palate and ear

> infections that were severe and chronic in nature. She now has ear

> tubes and can hear 100% - I sooooooooooooooooo want to hear her voice.

> Does it ever happen?

>

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Guest guest

,

What's your daughter's diagnosis. Without knowing anything else about

your daughter, I would say it may take her longer to catch up and

become vocal because of her earlier challenges. Definitely try the

EFA/omegas. Is your daughter getting any kind of therapy? If so, what

kind(s)? What do the therapists say? Have you taken her to a

developmental pediatrician? If so, What was the prognosis/diagnosis?

>

> We were very pleased and surprised by the effects EFA/ omegas had

on our

> daughter adopted at 4 years of age and a non talker. I wish you

all the

> best and this site is a great source of info.

>

> Roxanne

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of

lisamlivingston

> Sent: Thursday, April 24, 2008 9:49 PM

>

> Subject: [ ] I am new

>

>

>

> I adopted my now 3.9 year old when she was 2.4, with a lfe history

of

> social neglect (China's orphanages), corrected cleft palate and ear

> infections that were severe and chronic in nature. She now has ear

> tubes and can hear 100% - I sooooooooooooooooo want to hear her

voice.

> Does it ever happen?

>

>

>

>

>

>

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Guest guest

My son had ear tubes last May and the best speech came recently. It

will come. Don't ever give up!

Also, once she gets speech you will get a window into what she never

heard and will have to fill in gaps. We are there right now thanks to

an excellent speech therapist. My son knows 3 year old stuff great

(he is 3) but clearly was not hearing well from 0-18 mos).

>

> >

> > I adopted my now 3.9 year old when she was 2.4, with a lfe

history of

> > social neglect (China's orphanages), corrected cleft palate and

ear

> > infections that were severe and chronic in nature. She now has

ear

> > tubes and can hear 100% - I sooooooooooooooooo want to hear her

voice.

> > Does it ever happen?

> >

>

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  • 2 months later...
Guest guest

Hello bjenkins317,

Brigitte,

I'm sorry this is happening to you.

There are some things you can do right away.

First, stop using sugar and processed carbohydrates. Cut way back on

animal products and eat a lot of vegetables and some fruit. Do this

right away and you can then decide on a more formal anti-cancer diet.

Find an MD who is willing to prescribe Low Dose Naltrexone. In the

meantime join the on LDN.

You have to decide what path to take depending on your own

circumstances and personality. It's also important to have someone

to help you.

One path would be to follow the Budwig diet as your primary tool.

This requires a complete life style revamp. There is a group

dedicated to this. The Budwig diet is the best cancer diet. It does

prohibit a lot of things (foods, supplements).

If you are not compatable with that approach, look at using

Sutherlandia OPC and IP6. You can learn about these on the Oleander

Soup Group. There is also a set of dietary guidlines that helps

with that regimen which you can find on the list. This approach will,

probably also work without a strict diet.

You will undoubtably get other suggestions from other members on this

list. I have listed things that you can start on fairly quickly, but

are still very powerful for stage IV cancers.

Mike

Sunday, July 6, 2008, 7:23:48 PM, you wrote:

b> Hi

b> My name is Brigitte and I just found out that my breast cancer that I

b> thought was under control has now spread to my liver and I am desolate.

b> Of course, the only thing that my onc has to offer me is some nasty

b> chemo and I just don't want to do it! He is telling me that if I don't,

b> then I will only have a few months to live. I am 45 and not ready to

b> die! Can anyone help me?

b> thank you so much

b> Brigitte

--

Best regards,

Mike mailto:goldenmike@...

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Guest guest

Hi Brigitte,

I'm sorry your cancer has spread.

Are you ER+ or negative?

The first thing I would suggest is looking seriously at the Budwig

Protocol. You can get more info at the flaxseedoil2 group. There

is also Essiac Tea. And LDN seems to be something to look carefully at.

There are other supplements you can look at as well.

ar

On Mon, 07 Jul 2008 00:23:48 -0000, " bjenkins317 "

<bjenkins317@...> said:

> Hi

>

> My name is Brigitte and I just found out that my breast cancer that I

> thought was under control has now spread to my liver and I am desolate.

> Of course, the only thing that my onc has to offer me is some nasty

> chemo and I just don't want to do it! He is telling me that if I don't,

> then I will only have a few months to live. I am 45 and not ready to

> die! Can anyone help me?

> thank you so much

> Brigitte

>

>

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

>

>

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Guest guest

Welcome Bridgette,

There are several of us here who also have breast Cancer.

Check out the Essiac tea, also known as Ojibiwa,. I have been on it since Feb.

and my tumors shunk. I had a mastectomy in May because the ultra sound Dr said

my tumors had doubled. The path report from surgery said very differently. Final

report: 1 tumor-1cmx1cmx2cm. In Feb. 1 was 2.7cm and 1 was 1.6 cm. I also used

Rife and changed my diet, very little cooked foods and lots of dark green. Keep

in touch with these guys. They have lots of good inormation for you.

Lori

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  • 1 month later...

Hi , Welcome.

You need to go to your doctor and tell him/her your symptoms and ask for a

Thyroid PANEL of tests,

Not just TSH which a lot do.

You want:

TSH

Free T3

Free T4

Antibodies

At a MINIMUM.

You also need

B12

Ferritin

Iron

ALSO ‹ it¹s critical to treat Adrenals if they are out of whack BEFORE or in

CONJUNCTION with thyroid so ask for:

CORTISOL

DHEA

And

Sex hormones.

Report back with your lab numbers AND ranges.

Sue

On 8/29/08 9:35 AM, " Gibert " <nlgibert@...> wrote:

>

>

>

> Hi my name is and I just joined the group.

>

> I don't know if I have hypothyroidism but trying to figure out if I do and

> what natural ways to help. My only symptoms are I am always cold and I get

> cold sores often. I never related the cold sores until I was reading a

> nutritional book last night and it mentioned it could be a thyroid problem. I

> do take naps in mid afternoon sometimes, however, if I lay off sugar and

> exercise I don't have that problem. I am 60, I eat pretty healthy, weight

> 127.

>

> I did have several blood tests from Nov.-Feb and I am not sure how to read

> the test results. The K was 5.6-5.9 and CL 110. I have other numbers but

> these were the items marked high. My LDL was 107 and my HDL 87, Chol 208 (H).

>

> I am wondering if eating walnuts, lots of vegetables or something in my diet

> is causing the lips to constantly tingle.

> Thanks for any comments.

>

>

>

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Hi, . I would suggest you get a complete thyroid panel [blood

test] done and report the results here. Please be sure to include ranges.

If you are in fact hypothyroid you could have Hashimoto's, or there

could be some other cause. If your body no longer produces thyroid

hormones then you have to replace them or you will die. Most of the

people who do replace them are able to live healthy and normal lives

pretty much in every way. A small percentage may have T4 to T3

conversion or other problems which make them more complex to properly

treat. In that case a product such as Armour or other T3 product will

be needed.

I would suggest you educate yourself by reading books and on the

internet. Just be aware that while much valuable information is

available that some of the info is inaccurate and could be dangerous or

fatal.

There are no supplements or vitamins that will treat hypothyroidism if

your thyroid gland does not function. Whether any of the concoctions

advertised to " treat " or " aid " the thyroid gland have any benefit other

than enriching the sellers is controversial.

Luck,

..

..

>

> Posted by: " Gibert " nlgibert@...

> <mailto:nlgibert@...?Subject=%20Re%3AI%20am%20new>

> nlgibert <nlgibert>

>

>

> Wed Sep 3, 2008 12:58 am (PDT)

>

> Hi my name is and I just joined the group.

>

> I don't know if I have hypothyroidism but trying to figure out if I do

> and what natural ways to help.

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The only problem with that request is the cortisol. It is a useless blood

test. She needs either the 24 hour salvia test or the 24 hour urine test for

cortisol. Those are the only 2 tests that are worth a damn. My thyroid doc

uses the 24 hour urine test, only.

Nancie

-- Re: I am new

Hi , Welcome.

You need to go to your doctor and tell him/her your symptoms and ask for a

Thyroid PANEL of tests,

Not just TSH which a lot do.

You want:

TSH

Free T3

Free T4

Antibodies

At a MINIMUM.

You also need

B12

Ferritin

Iron

ALSO ‹ it¹s critical to treat Adrenals if they are out of whack BEFORE or in

CONJUNCTION with thyroid so ask for:

CORTISOL

DHEA

And

Sex hormones.

Report back with your lab numbers AND ranges.

Sue

On 8/29/08 9:35 AM, " Gibert " <nlgibert@...> wrote:

>

>

>

> Hi my name is and I just joined the group.

>

> I don't know if I have hypothyroidism but trying to figure out if I do and

> what natural ways to help. My only symptoms are I am always cold and I get

> cold sores often. I never related the cold sores until I was reading a

> nutritional book last night and it mentioned it could be a thyroid problem

I

> do take naps in mid afternoon sometimes, however, if I lay off sugar and

> exercise I don't have that problem. I am 60, I eat pretty healthy, weight

> 127.

>

> I did have several blood tests from Nov.-Feb and I am not sure how to read

> the test results. The K was 5.6-5.9 and CL 110. I have other numbers but

> these were the items marked high. My LDL was 107 and my HDL 87, Chol 208

(H).

>

> I am wondering if eating walnuts, lots of vegetables or something in my

diet

> is causing the lips to constantly tingle.

> Thanks for any comments.

>

>

>

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The cortisol is not useless ­ it helps a doctor back

up the saliva tests and it can also be urine as well as blood.

I did not specify say, ³morning cortisol, serum² --I gave her the ³things²

she NEEDS tested.

Any little bit helps to get a doctor to ³SEE² adrenal fatigue.

IMVHO.

sue

On 9/3/08 2:36 PM, " Nancie Barnett " <deifspirit@...> wrote:

>

>

>

> The only problem with that request is the cortisol. It is a useless blood

> test. She needs either the 24 hour salvia test or the 24 hour urine test for

> cortisol. Those are the only 2 tests that are worth a damn. My thyroid doc

> uses the 24 hour urine test, only.

> Nancie

>

> -- Re: I am new

>

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It is useless because it only takes a snapshot of the cortisol level at ONE

particular time of the day- in your blood while the other tests check your

levels throughout a 24 hour period. My thyroid MD is an expert in natural

medicine and she only advocates using a test that covers a 24 hour period in

the day, not a blood test that only gives you a snapshot of one specific

time period. Your steroid levels fluctuate throughout the day. You need to

know what the rest of the day is like as in how your body adjusts to

stressors throughout the day. You need to know what your levels are like in

the early am, noon, the afternoon and the evening. Those readings will let

you know how your body handles stress in your body.

I only order either 24 hour salvia or even better 24 hour urine tests on my

patients.

-- Re: I am new

>

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Does the dr typically order the saliva tests or is that something i

could purchase over the internet??? or are u just talking about the ph??

Carol

>

> The cortisol is not useless ­ it helps a doctor back

> up the saliva tests and it can also be urine as well as blood.

>

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I guess you are not actually reading my posts.

First ‹ I never stated to have ³single cortisol reading² and secondly I

ALWAYS get a 24 test.

Sue

On 9/3/08 6:56 PM, " Nancie Barnett " <deifspirit@...> wrote:

>

>

>

> It is useless because it only takes a snapshot of the cortisol level at ONE

> particular time of the day- in your blood while the other tests check your

> levels throughout a 24 hour period. My thyroid MD is an expert in natural

> medicine and she only advocates using a test that covers a 24 hour period in

> the day, not a blood test that only gives you a snapshot of one specific

> time period. Your steroid levels fluctuate throughout the day. You need to

> know what the rest of the day is like as in how your body adjusts to

> stressors throughout the day. You need to know what your levels are like in

> the early am, noon, the afternoon and the evening. Those readings will let

> you know how your body handles stress in your body.

> I only order either 24 hour salvia or even better 24 hour urine tests on my

> patients.

>

> -- Re: I am new

>

> The cortisol is not useless ­ it helps a doctor back

> up the saliva tests and it can also be urine as well as blood.

>

> I did not specify say, ³morning cortisol, serum² --I gave her the ³things²

> she NEEDS tested.

>

> Any little bit helps to get a doctor to ³SEE² adrenal fatigue.

>

> IMVHO.

>

> sue

>

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For the saliva, I have not found a doctor who will order them, most of us

get them through DiagnnostTechs.

You can go to Canaryclub.org

Then I bring those to an M.D. So they can start doing ³their thing² to get

me on proper treatment and do testing that is covered by insurance.

sue

On 9/3/08 7:50 PM, " wildman350smom " <carolb@...> wrote:

>

>

>

> Does the dr typically order the saliva tests or is that something i

> could purchase over the internet??? or are u just talking about the ph??

> Carol

>

>

>> >

>> > The cortisol is not useless ­ it helps a doctor back

>> > up the saliva tests and it can also be urine as well as blood.

>> >

>

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