RE: doctors appointment today and er visit

[Guest guest]

In a message dated 8/27/2004 6:39:31 PM Pacific Standard Time,

jamccoy@... writes:

Has anybody here evre been diagnosed with addisons disease.

Actually it is quite common with many dog breeds, LOL....one of our old

Westies had it. Vets usually have hydrocortisone for it, but there are

supplements

that can help feed the adrenals also.

's Disease: Adrenal Insufficiency

Liza

[Guest guest]

In a message dated 8/27/2004 6:39:31 PM Pacific Standard Time,

jamccoy@... writes:

Has anybody here evre been diagnosed with addisons disease.

Actually it is quite common with many dog breeds, LOL....one of our old

Westies had it. Vets usually have hydrocortisone for it, but there are

supplements

that can help feed the adrenals also.

's Disease: Adrenal Insufficiency

Liza

[Guest guest]

In a message dated 8/27/2004 6:39:31 PM Pacific Standard Time,

jamccoy@... writes:

Has anybody here evre been diagnosed with addisons disease.

Oh, and here is a site that tells a bit about natural treatments and the

causes of this & other auto-immune diseases....

Caring Medical - Treatment of 's Disease

[Guest guest]

In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time,

Thing1973@... writes:

Caring Medical - Treatment of 's Disease

oops, links didn't come thru......

http://www.caringmedical.com/symptoms/condition.asp?condition_id=954

[Guest guest]

it looks like it didn't send it all due to being an attachment, you can send

it to me at my personal address at jamccoy@... if you would like.

Re: doctors appointment today and er visit

> In a message dated 8/27/2004 6:39:31 PM Pacific Standard Time,

> jamccoy@... writes:

> Has anybody here evre been diagnosed with addisons disease.

> Oh, and here is a site that tells a bit about natural treatments and the

> causes of this & other auto-immune diseases....

>

> Caring Medical - Treatment of 's Disease

>

>

>

[Guest guest]

In a message dated 8/28/2004 11:49:45 AM Pacific Standard Time,

bfhalkett@... writes:

I

am thinking that there is an autoimmune component....or possibly even

basis in HEDS and possibly even other types of EDS. How do you see this

or what research is out there?

Bernie

So far 's hasn't shown up as an oft-related issue with EDS in our

studies & surveys, but I do have it listed on the symptom list I've been

updating.

There are LOTS of people wondering and theorizing about EDS being...or at

least having...an autoimmune component. The online group has been collecting

antecdotal cases and info, and hope we can interest a researcher into looking at

the ideas (thanks, Judy !!) However, funding once again for research will

be the stumbling block...so if anyone out there has connections.....HOLLER!

Several thoughts (mine only) about the auto-immune aspect:

1) Looking at my own family history, we can tell who passed the EDS to whom.

However, until my generation, none ever suffered like I did. My Mom had

minor aches...and she lives in Oregon, grows her own produce, eats healthy food

religiously, square dances, cross-country skiis, etc. I live in polluted So

California, lived on soda and popcorn working at a theatre for ages, had a desk

job next & lived on pizza & soda, then ate almost nothing but 49 cent

Mc's cheeseburgers when we were broke and starting our pet shop. My kids

grew

up on fast food, whereas I did have 15 years of good cooking from my Mom as a

kid. My EDS kicked in BIG time when I was pregnant with my son (we've often

reported hormones affect EDS a LOT)....but my daughter started having minor pain

at age 9, and got majorly ill after her periods started at age 11. The past

couple years we started really eating better, exercising more & both of us

improved tremendously. So from my experiences I think we CAN affect the

severity

by our lifestyles.

2) My nutritionist has mentioned that ALL autoimmune patients that she has

helped have had issues with yeast overgrowth, parasites, leaky gut syndrome,

allergies, hormone imbalances and thyroid malfunctions. ALL can be treated

nutritionally, most come from an excess of simple carb-based diets, aka the SAD

diet (Standarrd American Diet ). However, she is also against the

high-protein diets, as they are far too damaging to the kidneys and heart over

time. Raw

foods, proper supplements (even the raw stuff is mineral-deficient) and good

water, complex (whole grain) carbs are her choices to heal.

3) One doctor we've heard from on this issue theorized HEDS could be perhaps

30% affected by genetics, but the rest by environmental triggers. Several

other sources have said basically the same thing.

4) Several docs and researchers also mention that many Fibro patients may

have EDS. Many of us got that Fibro diagnosis along the way to our EDS

confirmation. So if Fibro=autoimmune, then EDS also can = autoimmune? Many of

the

signs and symptoms sure overlap.

Lots more, but you get the picture. The range alone of symptoms and severity

of EDS...and HEDS especially (plus no yet-known marker for HEDS) make it very

likely it works on the system like any other auto-immune disorder.....

Liza

[Guest guest]

In a message dated 8/28/2004 11:49:45 AM Pacific Standard Time,

bfhalkett@... writes:

I

am thinking that there is an autoimmune component....or possibly even

basis in HEDS and possibly even other types of EDS. How do you see this

or what research is out there?

Bernie

So far 's hasn't shown up as an oft-related issue with EDS in our

studies & surveys, but I do have it listed on the symptom list I've been

updating.

There are LOTS of people wondering and theorizing about EDS being...or at

least having...an autoimmune component. The online group has been collecting

antecdotal cases and info, and hope we can interest a researcher into looking at

the ideas (thanks, Judy !!) However, funding once again for research will

be the stumbling block...so if anyone out there has connections.....HOLLER!

Several thoughts (mine only) about the auto-immune aspect:

1) Looking at my own family history, we can tell who passed the EDS to whom.

However, until my generation, none ever suffered like I did. My Mom had

minor aches...and she lives in Oregon, grows her own produce, eats healthy food

religiously, square dances, cross-country skiis, etc. I live in polluted So

California, lived on soda and popcorn working at a theatre for ages, had a desk

job next & lived on pizza & soda, then ate almost nothing but 49 cent

Mc's cheeseburgers when we were broke and starting our pet shop. My kids

grew

up on fast food, whereas I did have 15 years of good cooking from my Mom as a

kid. My EDS kicked in BIG time when I was pregnant with my son (we've often

reported hormones affect EDS a LOT)....but my daughter started having minor pain

at age 9, and got majorly ill after her periods started at age 11. The past

couple years we started really eating better, exercising more & both of us

improved tremendously. So from my experiences I think we CAN affect the

severity

by our lifestyles.

2) My nutritionist has mentioned that ALL autoimmune patients that she has

helped have had issues with yeast overgrowth, parasites, leaky gut syndrome,

allergies, hormone imbalances and thyroid malfunctions. ALL can be treated

nutritionally, most come from an excess of simple carb-based diets, aka the SAD

diet (Standarrd American Diet ). However, she is also against the

high-protein diets, as they are far too damaging to the kidneys and heart over

time. Raw

foods, proper supplements (even the raw stuff is mineral-deficient) and good

water, complex (whole grain) carbs are her choices to heal.

3) One doctor we've heard from on this issue theorized HEDS could be perhaps

30% affected by genetics, but the rest by environmental triggers. Several

other sources have said basically the same thing.

4) Several docs and researchers also mention that many Fibro patients may

have EDS. Many of us got that Fibro diagnosis along the way to our EDS

confirmation. So if Fibro=autoimmune, then EDS also can = autoimmune? Many of

the

signs and symptoms sure overlap.

Lots more, but you get the picture. The range alone of symptoms and severity

of EDS...and HEDS especially (plus no yet-known marker for HEDS) make it very

likely it works on the system like any other auto-immune disorder.....

Liza

[Guest guest]

Liza:

Do you know from research or other perceptions if HEDS and other EDS

types develop s Disease. My reason for asking is that my

daughter was put on Fludrocortisone 0.1 mgm BID by Dr. Grubb. It had a

very good effect, within 3 days she had more animation in her face,

posture and improved energy. I understand that the logic behind this

was that Florinef helps retain salt and thereby retain water and improve

circulating blood volume with result that BP is improved elevated some.

Low standing BP and tachycardia were her problems. The biggest thing we

noticed was that her severe palor was reduced.

Forinef is a glucocorticoid used in the treatment of the Autoimmune

disorder

s disease (one of the drugs). Her dosage is very much less than

that used in s but the other very discomforting symptom she had

was a very sore throat particularly worse in am and the very bad breath

that goes with it. This was also improved but returns occasionally. I

am thinking that there is an autoimmune component....or possibly even

basis in HEDS and possibly even other types of EDS. How do you see this

or what research is out there?

Bernie

Re: doctors appointment today and er visit

In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time,

Thing1973@... writes:

Caring Medical - Treatment of 's Disease

oops, links didn't come thru......

http://www.caringmedical.com/symptoms/condition.asp?condition_id=954

[Guest guest]

I've been on florinef for the last 6 weeks, my cardiologist raised it a few

weeks from .1 mg to .2 mgs. Still it has not seemed to help increase my BP,

there have been some days it would help but more days than not it is still

fairly low.

Re: doctors appointment today and er visit

>

> In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time,

> Thing1973@... writes:

> Caring Medical - Treatment of 's Disease

> oops, links didn't come thru......

>

> http://www.caringmedical.com/symptoms/condition.asp?condition_id=954

>

>

>

[Guest guest]

I've been on florinef for the last 6 weeks, my cardiologist raised it a few

weeks from .1 mg to .2 mgs. Still it has not seemed to help increase my BP,

there have been some days it would help but more days than not it is still

fairly low.

Re: doctors appointment today and er visit

>

> In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time,

> Thing1973@... writes:

> Caring Medical - Treatment of 's Disease

> oops, links didn't come thru......

>

> http://www.caringmedical.com/symptoms/condition.asp?condition_id=954

>

>

>