RE: Fw: Fibromyalgia and Exam stress

[Guest guest]

Nil and others who are being so helpful,

The only " psychiatirc drug " would be provigil, which she was given because

of her sleep disorder that was diagnosed last year. She is on is cytomel,

one 5mcg tablet in the morning and one at night. Her doctor's assistant

had increased it to 10 mcgs in the morning and 10 mcgs at night for about

four weeks before all this started, but then the doctor himself got worried

that the cytomel was what caused the slide, so he wanted it reduced to 10 a

day, split between morning and night. That is where it has been for about

a week.

He just this week put her on the new pain medications ultram and

lyrica. She also takes low dose naltrexone, which she has been on for

several years to boost her immune system, which has been where she has had

problems in the past. I certainly need to talk to that doctor about the

combination of the ultram and the low-dose naltrexone....

We also started her about a week ago on nasal oxytocin after consulting

with several physicians who have experience with it and after finding the

article that says it tends low in FM and that when it is low, the results

can be exactly what we've seen happening in Grace. Grace is quite convinced

the oxytocin is helping her, and noticed the difference right away, but she

is not certain anything else is helping.

She does take supplements, and has since she was four and we had a huge

metabolic workup. I've recently adjusted what she takes to what I found

clinical trials on in FM, but I use really low doses. We tend to steer

clear of herbs for she lost ground last year when on the advice of her

physician (because of her diet) we added in Juice Plus veggies and fruit,

and a bowel cleansing herb program. She got to where she literally

couldn't think on this herbal program, and it scared me to death to see her

so zombied. I quit at once the whole lot of these plant-based things, and

in a week she was fine. I really do think she may have some intolerance to

what is in some fruits and veggies and maybe that is why she won't eat

them. It may be oxalate, or something else.

By the way, I know a lot about oxalate because I run a listserve for people

doing the low oxalate diet that has almost two thousand people on it. That

has become a huge part of my work as a researcher in autism. Other people

looking at oxalates long before my interest showed up in looking at

oxalates in autism...they were the ones who observed improvements in

fibromyalgia patients on the low oxalate diet. There are people with FM

who have subscribed to my list that are extremely excited about what the

diet has accomplished for them....freedom from pain, mostly!

Of course, I've known that the low oxalate diet helped fibromyalgia since I

began my research into oxalates three years ago, but until last week, I

didn't realize FM was what we were dealing with because my daughter didn't

complain of pain, and I didn't know about the hormone disruption or the

centrality of the non-restorative sleep to FM....but these were the two

things that became glaringly clear problems this past year. I think her

high pain tolerance kept us and her from recognizing she was in pain, so

when doctors asked her about pain, she always said no. But when they did

the test this last week where they press the FM tender spots

.....ouch! Some spots hurt after that for hours, she said.

Oxalate is a toxin that possibly could be behind the disruption in hormonal

regulation in FM, maybe in the hypothalamus or the pineal gland. There is a

huge volume of research showing how it disrupts the thyroid, but there has

been very little interest in the brain.

We're pretty certain that in some people, oxalate can get beyond the blood

brain barrier because the low oxalate diet is producing incredible

brain-related changes in children and adults with autism. We heard last

week of a child who went from very seriously impaired to now completely

disqualified from any special ed because she had a perfect score on their

testing. Another child went from being autistic and totally unable to move

at age four and a half (suspected of also being deaf and blind) to being a

marathon crawler less than a year later. who now loves interacting with

everybody.. An adult with autism who is in his mid-forties has changed so

much that even strangers can tell the difference. The listserve grew

steadily as the news about the effectiveness of the diet spread fast.

About a dozen years I started to be close to and eventually became part of

the DAN! thinktank, which is a group of doctors that help kids with autism

recover. It is made mainly of doctors (many who also have Ph.D.s) and some

basic scientists and two scholarly researchers (which is what I am). My

job has been to find the medical literature that addresses the clinical

issues we see in autism. With these connections to some of the brightest

minds, years ago I found some things that helped my daughter tremendously

although I want to be clear that she has never looked like she had anything

close to autism.

The gluten free diet completely changed her life when she was four and so

did epsom salts baths. She went from having very poor motor skills and

gravitational issues and many sensory issues and terrible sensitivity to

fumes and chemicals, with no potty training at four years old to being

dismissed from all therapy at five. Up to that point she had required

physical and occupational therapy since she was eleven months old.

Once she got in school, she did super, but the one thing I couldn't seem to

find a solution for was her immunological problems that kept her out of

school an average of about fourteen days each school year and she would be

wiped out after being sick. Last year was much worse mainly because two

family members came at Thanksgiving to our house sick, and then another

came down with the flu while she was here. Grace then caught two things

back to back and that was the beginning of her sleep disorder and ups and

downs.

The only hint of a problem before this has been huge ups and downs on

standardized testing that were puzzling, because until recently she has

done superbly at school and has been in International Baccalaureate, and

doing as well as most of the others in the program. (She has tested at 98th

and 99th percentile on standardized tests, but then as low as 20th at other

times. We never could understand that when her school performance was so

even! I think the issue is now she has a new problem with test stress and

they really piled on the homework this year making her lose sleep on a

regular basis. We didn't realize how dangerous that was! Actually, test

stress for normal school things has hever been much of a problem until now

and as a musician she always handled tryouts with ease and won everything

she did.

After thinking long and hard these past two weeks, I'm thinking now that it

is possible she had fibromyalgia even as an infant because she cried in

utter misery about moving or even being put on her tummy. She never

crawled because of her aversion to being on her stomach. She says she has

always hurt whenever someone asked her to run, and she could not keep up

running with her peers. She's also incredibly stiff and always has

been. If she leans over to touch her toes, she cannot get her outstretched

hands within a foot of the floor without bending her knees, for instance.

But now, from reading some of your resources, I really do think maybe her

worst problem right now is adrenal fatigue, but it seems you are all in

chorus saying that I cannot do anything about that on the short side until

I get more testing done. Unfortunately, there is no mercy on the exams

waiting for her to get better, and she will have to study for her exams as

she hasn't seen most of the material in a long time now and it is

college-level work. I just want the study she does this next week to be as

stress-free as possible!

Actually, speaking of stress, this has been one of the most stressful weeks

of my life trying to figure out whose advice to take when there are so many

differing opinions....

At 11:03 AM 1/25/2008, you wrote:

>s

>Was she on any psychiatric medication? If yes,please forget what i said

>about adaptogens,holy basil,etc..I am not sure how these will interact

>with psychiatric meds.

>wish you the best.

>Nil

--

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Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.17.8/1196 - Release Date: 12/25/2007

12:18 PM

[Guest guest]

Nil and others who are being so helpful,

The only " psychiatirc drug " would be provigil, which she was given because

of her sleep disorder that was diagnosed last year. She is on is cytomel,

one 5mcg tablet in the morning and one at night. Her doctor's assistant

had increased it to 10 mcgs in the morning and 10 mcgs at night for about

four weeks before all this started, but then the doctor himself got worried

that the cytomel was what caused the slide, so he wanted it reduced to 10 a

day, split between morning and night. That is where it has been for about

a week.

He just this week put her on the new pain medications ultram and

lyrica. She also takes low dose naltrexone, which she has been on for

several years to boost her immune system, which has been where she has had

problems in the past. I certainly need to talk to that doctor about the

combination of the ultram and the low-dose naltrexone....

We also started her about a week ago on nasal oxytocin after consulting

with several physicians who have experience with it and after finding the

article that says it tends low in FM and that when it is low, the results

can be exactly what we've seen happening in Grace. Grace is quite convinced

the oxytocin is helping her, and noticed the difference right away, but she

is not certain anything else is helping.

She does take supplements, and has since she was four and we had a huge

metabolic workup. I've recently adjusted what she takes to what I found

clinical trials on in FM, but I use really low doses. We tend to steer

clear of herbs for she lost ground last year when on the advice of her

physician (because of her diet) we added in Juice Plus veggies and fruit,

and a bowel cleansing herb program. She got to where she literally

couldn't think on this herbal program, and it scared me to death to see her

so zombied. I quit at once the whole lot of these plant-based things, and

in a week she was fine. I really do think she may have some intolerance to

what is in some fruits and veggies and maybe that is why she won't eat

them. It may be oxalate, or something else.

By the way, I know a lot about oxalate because I run a listserve for people

doing the low oxalate diet that has almost two thousand people on it. That

has become a huge part of my work as a researcher in autism. Other people

looking at oxalates long before my interest showed up in looking at

oxalates in autism...they were the ones who observed improvements in

fibromyalgia patients on the low oxalate diet. There are people with FM

who have subscribed to my list that are extremely excited about what the

diet has accomplished for them....freedom from pain, mostly!

Of course, I've known that the low oxalate diet helped fibromyalgia since I

began my research into oxalates three years ago, but until last week, I

didn't realize FM was what we were dealing with because my daughter didn't

complain of pain, and I didn't know about the hormone disruption or the

centrality of the non-restorative sleep to FM....but these were the two

things that became glaringly clear problems this past year. I think her

high pain tolerance kept us and her from recognizing she was in pain, so

when doctors asked her about pain, she always said no. But when they did

the test this last week where they press the FM tender spots

.....ouch! Some spots hurt after that for hours, she said.

Oxalate is a toxin that possibly could be behind the disruption in hormonal

regulation in FM, maybe in the hypothalamus or the pineal gland. There is a

huge volume of research showing how it disrupts the thyroid, but there has

been very little interest in the brain.

We're pretty certain that in some people, oxalate can get beyond the blood

brain barrier because the low oxalate diet is producing incredible

brain-related changes in children and adults with autism. We heard last

week of a child who went from very seriously impaired to now completely

disqualified from any special ed because she had a perfect score on their

testing. Another child went from being autistic and totally unable to move

at age four and a half (suspected of also being deaf and blind) to being a

marathon crawler less than a year later. who now loves interacting with

everybody.. An adult with autism who is in his mid-forties has changed so

much that even strangers can tell the difference. The listserve grew

steadily as the news about the effectiveness of the diet spread fast.

About a dozen years I started to be close to and eventually became part of

the DAN! thinktank, which is a group of doctors that help kids with autism

recover. It is made mainly of doctors (many who also have Ph.D.s) and some

basic scientists and two scholarly researchers (which is what I am). My

job has been to find the medical literature that addresses the clinical

issues we see in autism. With these connections to some of the brightest

minds, years ago I found some things that helped my daughter tremendously

although I want to be clear that she has never looked like she had anything

close to autism.

The gluten free diet completely changed her life when she was four and so

did epsom salts baths. She went from having very poor motor skills and

gravitational issues and many sensory issues and terrible sensitivity to

fumes and chemicals, with no potty training at four years old to being

dismissed from all therapy at five. Up to that point she had required

physical and occupational therapy since she was eleven months old.

Once she got in school, she did super, but the one thing I couldn't seem to

find a solution for was her immunological problems that kept her out of

school an average of about fourteen days each school year and she would be

wiped out after being sick. Last year was much worse mainly because two

family members came at Thanksgiving to our house sick, and then another

came down with the flu while she was here. Grace then caught two things

back to back and that was the beginning of her sleep disorder and ups and

downs.

The only hint of a problem before this has been huge ups and downs on

standardized testing that were puzzling, because until recently she has

done superbly at school and has been in International Baccalaureate, and

doing as well as most of the others in the program. (She has tested at 98th

and 99th percentile on standardized tests, but then as low as 20th at other

times. We never could understand that when her school performance was so

even! I think the issue is now she has a new problem with test stress and

they really piled on the homework this year making her lose sleep on a

regular basis. We didn't realize how dangerous that was! Actually, test

stress for normal school things has hever been much of a problem until now

and as a musician she always handled tryouts with ease and won everything

she did.

After thinking long and hard these past two weeks, I'm thinking now that it

is possible she had fibromyalgia even as an infant because she cried in

utter misery about moving or even being put on her tummy. She never

crawled because of her aversion to being on her stomach. She says she has

always hurt whenever someone asked her to run, and she could not keep up

running with her peers. She's also incredibly stiff and always has

been. If she leans over to touch her toes, she cannot get her outstretched

hands within a foot of the floor without bending her knees, for instance.

But now, from reading some of your resources, I really do think maybe her

worst problem right now is adrenal fatigue, but it seems you are all in

chorus saying that I cannot do anything about that on the short side until

I get more testing done. Unfortunately, there is no mercy on the exams

waiting for her to get better, and she will have to study for her exams as

she hasn't seen most of the material in a long time now and it is

college-level work. I just want the study she does this next week to be as

stress-free as possible!

Actually, speaking of stress, this has been one of the most stressful weeks

of my life trying to figure out whose advice to take when there are so many

differing opinions....

At 11:03 AM 1/25/2008, you wrote:

>s

>Was she on any psychiatric medication? If yes,please forget what i said

>about adaptogens,holy basil,etc..I am not sure how these will interact

>with psychiatric meds.

>wish you the best.

>Nil

--

Internal Virus Database is out-of-date.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.17.8/1196 - Release Date: 12/25/2007

12:18 PM

[Guest guest]

Nil and others who are being so helpful,

The only " psychiatirc drug " would be provigil, which she was given because

of her sleep disorder that was diagnosed last year. She is on is cytomel,

one 5mcg tablet in the morning and one at night. Her doctor's assistant

had increased it to 10 mcgs in the morning and 10 mcgs at night for about

four weeks before all this started, but then the doctor himself got worried

that the cytomel was what caused the slide, so he wanted it reduced to 10 a

day, split between morning and night. That is where it has been for about

a week.

He just this week put her on the new pain medications ultram and

lyrica. She also takes low dose naltrexone, which she has been on for

several years to boost her immune system, which has been where she has had

problems in the past. I certainly need to talk to that doctor about the

combination of the ultram and the low-dose naltrexone....

We also started her about a week ago on nasal oxytocin after consulting

with several physicians who have experience with it and after finding the

article that says it tends low in FM and that when it is low, the results

can be exactly what we've seen happening in Grace. Grace is quite convinced

the oxytocin is helping her, and noticed the difference right away, but she

is not certain anything else is helping.

She does take supplements, and has since she was four and we had a huge

metabolic workup. I've recently adjusted what she takes to what I found

clinical trials on in FM, but I use really low doses. We tend to steer

clear of herbs for she lost ground last year when on the advice of her

physician (because of her diet) we added in Juice Plus veggies and fruit,

and a bowel cleansing herb program. She got to where she literally

couldn't think on this herbal program, and it scared me to death to see her

so zombied. I quit at once the whole lot of these plant-based things, and

in a week she was fine. I really do think she may have some intolerance to

what is in some fruits and veggies and maybe that is why she won't eat

them. It may be oxalate, or something else.

By the way, I know a lot about oxalate because I run a listserve for people

doing the low oxalate diet that has almost two thousand people on it. That

has become a huge part of my work as a researcher in autism. Other people

looking at oxalates long before my interest showed up in looking at

oxalates in autism...they were the ones who observed improvements in

fibromyalgia patients on the low oxalate diet. There are people with FM

who have subscribed to my list that are extremely excited about what the

diet has accomplished for them....freedom from pain, mostly!

Of course, I've known that the low oxalate diet helped fibromyalgia since I

began my research into oxalates three years ago, but until last week, I

didn't realize FM was what we were dealing with because my daughter didn't

complain of pain, and I didn't know about the hormone disruption or the

centrality of the non-restorative sleep to FM....but these were the two

things that became glaringly clear problems this past year. I think her

high pain tolerance kept us and her from recognizing she was in pain, so

when doctors asked her about pain, she always said no. But when they did

the test this last week where they press the FM tender spots

.....ouch! Some spots hurt after that for hours, she said.

Oxalate is a toxin that possibly could be behind the disruption in hormonal

regulation in FM, maybe in the hypothalamus or the pineal gland. There is a

huge volume of research showing how it disrupts the thyroid, but there has

been very little interest in the brain.

We're pretty certain that in some people, oxalate can get beyond the blood

brain barrier because the low oxalate diet is producing incredible

brain-related changes in children and adults with autism. We heard last

week of a child who went from very seriously impaired to now completely

disqualified from any special ed because she had a perfect score on their

testing. Another child went from being autistic and totally unable to move

at age four and a half (suspected of also being deaf and blind) to being a

marathon crawler less than a year later. who now loves interacting with

everybody.. An adult with autism who is in his mid-forties has changed so

much that even strangers can tell the difference. The listserve grew

steadily as the news about the effectiveness of the diet spread fast.

About a dozen years I started to be close to and eventually became part of

the DAN! thinktank, which is a group of doctors that help kids with autism

recover. It is made mainly of doctors (many who also have Ph.D.s) and some

basic scientists and two scholarly researchers (which is what I am). My

job has been to find the medical literature that addresses the clinical

issues we see in autism. With these connections to some of the brightest

minds, years ago I found some things that helped my daughter tremendously

although I want to be clear that she has never looked like she had anything

close to autism.

The gluten free diet completely changed her life when she was four and so

did epsom salts baths. She went from having very poor motor skills and

gravitational issues and many sensory issues and terrible sensitivity to

fumes and chemicals, with no potty training at four years old to being

dismissed from all therapy at five. Up to that point she had required

physical and occupational therapy since she was eleven months old.

Once she got in school, she did super, but the one thing I couldn't seem to

find a solution for was her immunological problems that kept her out of

school an average of about fourteen days each school year and she would be

wiped out after being sick. Last year was much worse mainly because two

family members came at Thanksgiving to our house sick, and then another

came down with the flu while she was here. Grace then caught two things

back to back and that was the beginning of her sleep disorder and ups and

downs.

The only hint of a problem before this has been huge ups and downs on

standardized testing that were puzzling, because until recently she has

done superbly at school and has been in International Baccalaureate, and

doing as well as most of the others in the program. (She has tested at 98th

and 99th percentile on standardized tests, but then as low as 20th at other

times. We never could understand that when her school performance was so

even! I think the issue is now she has a new problem with test stress and

they really piled on the homework this year making her lose sleep on a

regular basis. We didn't realize how dangerous that was! Actually, test

stress for normal school things has hever been much of a problem until now

and as a musician she always handled tryouts with ease and won everything

she did.

After thinking long and hard these past two weeks, I'm thinking now that it

is possible she had fibromyalgia even as an infant because she cried in

utter misery about moving or even being put on her tummy. She never

crawled because of her aversion to being on her stomach. She says she has

always hurt whenever someone asked her to run, and she could not keep up

running with her peers. She's also incredibly stiff and always has

been. If she leans over to touch her toes, she cannot get her outstretched

hands within a foot of the floor without bending her knees, for instance.

But now, from reading some of your resources, I really do think maybe her

worst problem right now is adrenal fatigue, but it seems you are all in

chorus saying that I cannot do anything about that on the short side until

I get more testing done. Unfortunately, there is no mercy on the exams

waiting for her to get better, and she will have to study for her exams as

she hasn't seen most of the material in a long time now and it is

college-level work. I just want the study she does this next week to be as

stress-free as possible!

Actually, speaking of stress, this has been one of the most stressful weeks

of my life trying to figure out whose advice to take when there are so many

differing opinions....

At 11:03 AM 1/25/2008, you wrote:

>s

>Was she on any psychiatric medication? If yes,please forget what i said

>about adaptogens,holy basil,etc..I am not sure how these will interact

>with psychiatric meds.

>wish you the best.

>Nil

--

Internal Virus Database is out-of-date.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.17.8/1196 - Release Date: 12/25/2007

12:18 PM

[Guest guest]

Could you send a link to the low oxalate group? I think a lot of us on this

list who have mercury issues might be interested.

Thanks, Cheri

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

Nil and others who are being so helpful,

By the way, I know a lot about oxalate because I run a listserve for

people

doing the low oxalate diet that has almost two thousand people on it. That

has become a huge part of my work as a researcher in autism. Other people

looking at oxalates long before my interest showed up in looking at

oxalates in autism...they were the ones who observed improvements in

fibromyalgia patients on the low oxalate diet. There are people with FM

who have subscribed to my list that are extremely excited about what the

diet has accomplished for them....freedom from pain, mostly!

.

[Guest guest]

,

I wanted to chime in again and let you know that the provigil may actually

contribute to her adrenal fatigue. I'm not saying to take her off of it

right now, but look into it when you get a chance. I took it from June 2007

until Dec. 2007. At first it did help my energy levels. Then it got so that

I couldn't do without it. If I somehow forgot it, my fatigue increased 10

times or more. It wasn't until I started researching that I realized it can

actually be causing more stress on my adrenals. Sort of how caffine does.

Anyway, I quit taking it a few weeks after starting the HC and am doing

alright without it. I did take it one or two days when I really needed to

have some extra energy and I felt not more energized, but sort of hyper. The

biggest thing I noticed was that I couldn't seem to quit talking and talking

very fast. So I think i'm going to avoid it from now on. I'm still working

on the caffine! ;-) You seem like someone who really researches things, but

I would be remiss if I didn't point out that oxictoyn is very addictive so

please be careful with it. I used to work with a man who was addicted to it

and he ended up losing his job, his wife and everything. Another friend of

mine's daughter in law is currently addicted and is ruining her life along

with her husband and children. So I always remind people to be careful even

if they already know it. :-)

Have you seen the theory that fibromyalgia is actual undiagnosed and/or

undertreated thyroid? Keep plugging away! You will find the answers you need

for your daughter to help her feel better. She is lucky to have you.

Cherie

Experience: that most brutal of teachers. But you learn, my God do you

learn.--C.S.

> The only " psychiatirc drug " would be provigil, which she was

> given because

> of her sleep disorder that was diagnosed last year. She is on is cytomel,

> one 5mcg tablet in the morning and one at night. Her doctor's assistant

> had increased it to 10 mcgs in the morning and 10 mcgs at night for about

> four weeks before all this started, but then the doctor himself

> got worried

> that the cytomel was what caused the slide, so he wanted it

> reduced to 10 a

> day, split between morning and night. That is where it has been

> for about

> a week.

>

>

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11:24 AM