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Dear Laurel,

I tried low-dose Cortef 18 months into my illness after diagnosing myself

after seeing Dr. Teitelbaum's book From Fatigued to Fantastic on a

pharmacy bookshelf. The book has many good recommendations but studies of

hydrocortisone's (Cortef) usefulness in CFS show mixed results. If you have

a proven case of 's disease then Cortef will completely resolve your

symptoms and you will stay on this medication for life. I doubt you have it

given your Dr. suggested you gradually up your dose from 5 to 20 mg./day.

This is more in line with Cortef's use (or should I say misuse) in CFS. One

Lancet-published study of low-dose Cortef (I think 5-10 mg) indicated that

some CFS patients showed very modest improvement but not enough to be

statistically significant so the study did not conclude Cortef therapy was

successful in combatting CFS. A study pulished in the Amer. Med. Jounal

used higher doses of about 25 mg/day which is roughly equal to what Addson's

patients are given (people who have complete or near adrenal failure). This

study was halted because the test subject's began to suffer from adrenal

suppression; that is their normal functioning adrenal glands began to shut

down (this is because their bodies were getting cortisol artifically and the

organs responded by countering the affect). The majority of top CFS

specialists believe hydrocortisone therapy is not beneficial in the long

run. You will feel better initially. Everyone does when taking steroids

(Cortef is a steroid), but you will find you need to keep increasing your

dose to maintain this benefit and eventually you may end up like the test

subjects cited above. I tried Cortef 2.5 to 7.5 mg/day early in my illness.

It did provide temporary improvement. Low doses over a short period may

allow your adrenal glands to recover from burn-out but I would strongly

suggest you take no more than 5 mg./day for no more than 2-3 weeks then

gradually taper off your dose to zero (unless again you've been diagnosed

with s). In the future use low doses of 2.5 to 5 mg. for no more

than 3-4 days during periods of severe flare-up of your symptoms and always

taper off your dose gradually to avoid adverse reactions to this addictive

steroid. If you haven't already done so, begin taking one of the

whey-protein products (I suggest Imuplus to start). Take 4 packets/day for

30 days if you can tolerate it. If not, gradually work up to this dose

which will bring your functional glutathine levels to normal in as little as

30 days. Later you can lower the dose to 1-2 packets a day and experiment

with the cheaper Immunepro (both whey protein supplements available at

needs.com). If you have CFS, other useful therapies can include

hydroxycobalamin (type of B-12) injections IM 5-10 mg./day available at some

compounding pharmacies including Wellness Pharmacy in Birmingham, AL who

ship nationwide (this form of B-12 has powerful toxin neutralizing abilities

and provides you with B-12; most CFSers have been found to have no b-12 in

their cerebrospinal fluid), and Somatomed or Vespro GHS (growth hormone

releasers available at Vespro 913-438-3074). If you have any

gastrointestinal abnormalities I'd further suggest artemesia (often sold in

large health food stores in a tincture bottle) which can kill off intestinal

parasites and Perm-A-Vite, a product that reduces gastrointestinal

permeability and thus reduces the amount of toxins seeping into your

bloodstream (available at nuticology.com and maybe at needs.com). These are

the core products you can use to combat CFS. If useful there are others you

can add in the future. Good luck, Steve Bullock

Cortef

>

> Hi all,

>

> I have another adrenal related question!

>

> I've now seen 2 doctors who are recommending low-dose Cortef for low

adrenal

> function (although I've yet to see an endocronologist and have an appt at

the

> end of next month). They are recommending 5mg and then working up to

20mg.

> They said they would feel more comfortable giving me cortef than adrenal

> glandulars or licorice root, etc. However, since I have such adverse

> reactions to things, I'm extremely paranoid about taking it. I'm also

> extremely sick right now and don't have anyone to help me out if I do

happen

> to have a bad reaction to the Cortef. Both doctors have said that they

have

> not seen any adverse reactions in people with CFS. I feel like I need to

try

> whatever I can to get me out of this horrible 4 1/2 month (and counting!)

> relapse I'm experiencing, but scared silly of making things worse. Has

> anyone here had experience with Cortef, good or bad? Trudy... I think you

> had said you had a positive response -- I'll have to refer to one of your

> old emails!

>

> Also, I read that Cortef suppresses the immune system, which is an

additional

> concern. I'd appreciate any experiences/info... thanks!

>

> I again apologize if I'm making anyone repeat themselves... I haven't been

> able to keep up with the digests lately!

>

> Thanks,

> Laurel

>

> 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.

>

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Dear Laurel,

Just want to say I relate to the spot you're in, trying to decide.

I have even had bad reactions to supplements that knocked me down, and I

never ever get back all the way after a crash.

I listen to my gut when I am really afraid, (and pray a lot for guidance) I

decided long ago I would rather make mistakes based in my gut than on the

opinions of docs who are not nearly so cincerned about me as my gut is! I

think over the years my ability to make decisions/choices has improved in

this way, and that counts for something.(Would rather not have had to learn

so much, thank you, but c'est la vie!)

One thing I have learned over the years; it seems inevitable that I will

periodically make very unfortunate decisions. That is part of having such a

weird disease, it seems to me.

And I think you know that there are lots of adverse reports on florinef, as

well as good ones. I never would take obvious risks. Or I sometimes just make

my own test and take maybe 1/10 of the rx just to see. (Or

is flor. injected? brr.)

Blessings and peace to you.

Adrienne

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,

I agree with most of what el posted. However, be careful taking

licrice root or anything with licorice root in it. Licorice root increases

the bioavailability of cortisol so it will have a similar affect as taking

low doses of Cortef. It has some potentially dangerous side affects if

taken in too high a dose over a long period. The glyzeric acid (misspelled)

in it can alter the balance of potassium and magnesium in the body and cause

heart problems and other complications. It will also greatly reduce your

adrenal glands production of androsterione (probably misspelled), another

adrenal hormone. For these reasons, I would try to avoid long-term use of

licorice root or adrenal extracts but instead use them in moderation and if

possible only during periods of particular distress. Steve Bullock

Re: Cortef

>

> Everything I have read points to Cortef being anywhere from useless to

> harmful for PWCs.

>

> Before you give in to the " omniscient, omnipotent doctor " on this one, I

> think you owe it to yourself to give yourself a six week trial on

> Cortrex (Thorne Products, available from NEEDS). This is one of the

> supplements that combines adrenal extract, adrenal cortical extract, and

> licorice root; it's OTC so you don't need a doctor's prescription. And

> Thorne Products are very pure and hypoallergenic; I doubt you'll get any

> kind of adverse reaction to it. Take 2 capsules 3x/day (or 3 caps 2x a

> day if it's easier), and also supplement with one of the whey

> supplements (LEF 379, Immupro, Immuplus, Immunocal).

>

> Given that it sounds like you don't have 's disease, there is no

> reason to rush into using the Cortef. And frankly, given the kinds of

> side effects you can get from taking steroids, wouldn't you want to try

> a gentler route first? Cortrex has really helped pull me out of the

> multi-month tailspin I was in.

>

> --

>

> el - andrea@...

> (IFF " FNORD " appears - remove it from my email address to reply)

>

> " ...wake now! Discover that you are the song that the morning brings... "

>

>

>

>

> 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.

>

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Everything I have read points to Cortef being anywhere from useless to

harmful for PWCs.

Before you give in to the " omniscient, omnipotent doctor " on this one, I

think you owe it to yourself to give yourself a six week trial on

Cortrex (Thorne Products, available from NEEDS). This is one of the

supplements that combines adrenal extract, adrenal cortical extract, and

licorice root; it's OTC so you don't need a doctor's prescription. And

Thorne Products are very pure and hypoallergenic; I doubt you'll get any

kind of adverse reaction to it. Take 2 capsules 3x/day (or 3 caps 2x a

day if it's easier), and also supplement with one of the whey

supplements (LEF 379, Immupro, Immuplus, Immunocal).

Given that it sounds like you don't have 's disease, there is no

reason to rush into using the Cortef. And frankly, given the kinds of

side effects you can get from taking steroids, wouldn't you want to try

a gentler route first? Cortrex has really helped pull me out of the

multi-month tailspin I was in.

--

el - andrea@...

(IFF " FNORD " appears - remove it from my email address to reply)

" ...wake now! Discover that you are the song that the morning brings... "

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Steve;

I think there is a third possibility re: adrenal size. A pediatrician told

me once about this. If I recall correctly, she said it was demonstrable that

abuse of childen resulted in permanently elevated levels of cortisol. Perhaps

prolonged trauma could also shrink these organs.

Adrienne

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Re Cortrex, I would try that supplement before Cortef. however,

one word of warning, I have come to believe that licore extract (LE)

has been giving me no benefit and causing my immune system to be

less effective. Please note, I have chronic low WBC counts. I have

been meaning to post about this for quite a while, but for those of

us with low WBC counts, LE COULD suppress the immune system enough

to cause some harm. I was only taking about 2 grams per week of

Baschetti, and since I have stopped I haven't been sick at all.

Anyway, back to the Cortef, I agree w/ S. Bullock. You can also get

an ultrasound done on your adrenal glands. There was a study done

showing that some of the most severe cases of CFS had adrenal galnds

that were only 50% the size of normal! Jan may have a link to that

study as it was discussed widely on Dave's old group.

Mike

> Everything I have read points to Cortef being anywhere from useless

to

> harmful for PWCs.

>

> Before you give in to the " omniscient, omnipotent doctor " on this

one, I

> think you owe it to yourself to give yourself a six week trial on

> Cortrex (Thorne Products, available from NEEDS). This is one of the

> supplements that combines adrenal extract, adrenal cortical

extract, and

> licorice root; it's OTC so you don't need a doctor's prescription.

And

> Thorne Products are very pure and hypoallergenic; I doubt you'll

get any

> kind of adverse reaction to it. Take 2 capsules 3x/day (or 3 caps

2x a

> day if it's easier), and also supplement with one of the whey

> supplements (LEF 379, Immupro, Immuplus, Immunocal).

>

> Given that it sounds like you don't have 's disease, there

is no

> reason to rush into using the Cortef. And frankly, given the kinds

of

> side effects you can get from taking steroids, wouldn't you want to

try

> a gentler route first? Cortrex has really helped pull me out of the

> multi-month tailspin I was in.

>

> --

>

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I would agree completely except for PWCs who have 's. Nurse

Camilla has a website re the dangers of LE.

Mike

> ,

>

> I agree with most of what el posted. However, be

careful taking

> licrice root or anything with licorice root in it. Licorice root

increases

> the bioavailability of cortisol so it will have a similar affect as

taking

> low doses of Cortef. It has some potentially dangerous side

affects if

> taken in too high a dose over a long period. The glyzeric acid

(misspelled)

> in it can alter the balance of potassium and magnesium in the body

and cause

> heart problems and other complications. It will also greatly

reduce your

> adrenal glands production of androsterione (probably misspelled),

another

> adrenal hormone. For these reasons, I would try to avoid long-term

use of

> licorice root or adrenal extracts but instead use them in

moderation and if

> possible only during periods of particular distress. Steve Bullock

> > " ...wake now! Discover that you are the song that the morning

brings... "

> >

> >

> >

> >

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Mike,

I was also taking Baschetti's licorice; probably the same dose as you. It

only contains 91 mg. of glyzheric acid per gram so 2 grams per week is safe

according to two research articles I pulled on the affects of long-term use

of licorice extract. Nevertheless, I agree that we're better off not taking

this stuff because it's only a short term fix. The adrenal size study was

performed by a Dr. Lucinda in Ireland. She found all of the CFS

patients she studied had adrenal glands that were 1/2 the size of a control

group. My question is are a certain subgroup of us born with undersized

adrenals and then left suseptible to CFS (below normal cortisol levels

weakens the immune system) or is the undersize the result of adrenal

burn-out/damage to the adrenals after we acquire CFS. Personally, I think

some of us may be born with undersized adrenals because some of the

individuals in the L.V. study only recently came down with CFS and

it's hard to believe the adrenals could atrophy so quickly. I was born

prematurely and possibly that is the reason my adrenals could be under-sized

(although I haven't had them tested). Steve Bullock

Re: Cortef

>

> Re Cortrex, I would try that supplement before Cortef. however,

> one word of warning, I have come to believe that licore extract (LE)

> has been giving me no benefit and causing my immune system to be

> less effective. Please note, I have chronic low WBC counts. I have

> been meaning to post about this for quite a while, but for those of

> us with low WBC counts, LE COULD suppress the immune system enough

> to cause some harm. I was only taking about 2 grams per week of

> Baschetti, and since I have stopped I haven't been sick at all.

> Anyway, back to the Cortef, I agree w/ S. Bullock. You can also get

> an ultrasound done on your adrenal glands. There was a study done

> showing that some of the most severe cases of CFS had adrenal galnds

> that were only 50% the size of normal! Jan may have a link to that

> study as it was discussed widely on Dave's old group.

>

> Mike

>

>

>

>

>

>

>

> > Everything I have read points to Cortef being anywhere from useless

> to

> > harmful for PWCs.

> >

> > Before you give in to the " omniscient, omnipotent doctor " on this

> one, I

> > think you owe it to yourself to give yourself a six week trial on

> > Cortrex (Thorne Products, available from NEEDS). This is one of the

> > supplements that combines adrenal extract, adrenal cortical

> extract, and

> > licorice root; it's OTC so you don't need a doctor's prescription.

> And

> > Thorne Products are very pure and hypoallergenic; I doubt you'll

> get any

> > kind of adverse reaction to it. Take 2 capsules 3x/day (or 3 caps

> 2x a

> > day if it's easier), and also supplement with one of the whey

> > supplements (LEF 379, Immupro, Immuplus, Immunocal).

> >

> > Given that it sounds like you don't have 's disease, there

> is no

> > reason to rush into using the Cortef. And frankly, given the kinds

> of

> > side effects you can get from taking steroids, wouldn't you want to

> try

> > a gentler route first? Cortrex has really helped pull me out of the

> > multi-month tailspin I was in.

> >

> > --

> >

>

>

>

> 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.

>

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;

I guess you could say she's " hip! " But its probably due to the fact that she

actually has an mcs practice. Sees some babies but more adults.I am sure

there has to be something constitutional about how we react to trauma, but I

believe it has even more to do with the severity and duration of the trauma.

She was talking about even one spanking making a permanent elevation in the

cortisol. So maybe in that light what trauma is needs to be redefined.

(Long haul to change the violence to children still ahead.)

( am -was-an art therapist, and am an abuse survivor.)

Adrienne

>

> Adrienne,

>

> I think your correct and I'm surprised your pediatrician was aware of this.

> This fits in with Dr. Jay Goldstein's theory of CFS. Childhood abuse,

> trauma, or in my case being born prematurely and spending 6 weeks in an

> incubator (traumatic for a newborn), can all cause what Goldstein calls

> " neural network disorders " . He believes some people with a genetic

> predisposition who are subjected to the above traumas suffer from this

> disorder. The prolonged trauma's elevate cortisol and adrenaline levels

and

> permanently throw the HPA-axis out of whack. For most people, the HPA-axis

> returns to normal but for those with the genetic predisposition, the neural

> networks don't return to normal. As you said, maybe the long term affect

of

> elevated baseline cortisol levels (and blunted HPA-axis or damaged " dynamic

> hormone response " is what I think Dr. Cheney calls it) causes our adrenal

> glands to atrophy. I know that my baseline cortisol level is on the high

> side but within the normal range while my cortisol level 1 hour after

> catrosyn (mispelled) stimulation test only increases about 35%. According

> to Dr. Teitelbaum, it should at least double one hour after the

> injection. Regards, Steve Bullock

>

>

> Re: Re: Cortef

> Content-Type: text/plain; charset=US-ASCII

> Content-Transfer-Encoding: 7bit

>

>

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Adrienne,

I think your correct and I'm surprised your pediatrician was aware of this.

This fits in with Dr. Jay Goldstein's theory of CFS. Childhood abuse,

trauma, or in my case being born prematurely and spending 6 weeks in an

incubator (traumatic for a newborn), can all cause what Goldstein calls

" neural network disorders " . He believes some people with a genetic

predisposition who are subjected to the above traumas suffer from this

disorder. The prolonged trauma's elevate cortisol and adrenaline levels and

permanently throw the HPA-axis out of whack. For most people, the HPA-axis

returns to normal but for those with the genetic predisposition, the neural

networks don't return to normal. As you said, maybe the long term affect of

elevated baseline cortisol levels (and blunted HPA-axis or damaged " dynamic

hormone response " is what I think Dr. Cheney calls it) causes our adrenal

glands to atrophy. I know that my baseline cortisol level is on the high

side but within the normal range while my cortisol level 1 hour after

catrosyn (mispelled) stimulation test only increases about 35%. According

to Dr. Teitelbaum, it should at least double one hour after the

injection. Regards, Steve Bullock

Re: Re: Cortef

>

> Steve;

> I think there is a third possibility re: adrenal size. A pediatrician

told

> me once about this. If I recall correctly, she said it was demonstrable

that

> abuse of childen resulted in permanently elevated levels of cortisol.

Perhaps

> prolonged trauma could also shrink these organs.

> Adrienne

>

>

> 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.

>

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From: Mike <mcamp10139@...>

<egroups>

Sent: Saturday, September 16, 2000 8:49 AM

Subject: Re: Cortef

> I would agree completely except for PWCs who have 's. Nurse

> Camilla has a website re the dangers of [Licorice Extract].

>

> Mike

>

Ginseng and pantethine are also good for the adrenals.

For women with endometriosis, watch out for ginseng, sterinols, and

licorice. Ginseng and licorice are both estrogenic; I get a lot of pain

with both of them. Sterinols did me in, too. Too bad, because they're good

herbs for most people.

_________________________________________________________

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Thanks to all who responded to my question about Cortef. I really appreciate

everyone's input. I think I'm going to opt to not take the Cortef at this

point. It doesn't sound like its worth the risk. About a year ago I tried

an adrenal glandular extract for several months -- It didn't help at the

time, but I'm a lot sicker now so it may be worth a second try in lieu of the

Cortef. Thanks again everyone for your input.

Steve -- you recommended that I take 4 packets of Immunocal or Imuplus to

start. Is this also Cheney's recommendation? I have been taking one packet

of Immunocal for several months now. Due to my serious reaction to Colostrum

(I went from working full-time with CFS to being almost completely bedridden

after just one dose), I'm concerned about trying Immunopro or uping my dose

of Immunocal too much. Prior to the Colostrum experience, I saw some

improvement with the whey (less relapses, slightly more energy) but was also

breaking out all over the place. Now I'm still breaking out but don't see

any improvement. Any thoughts on all of this?

Thanks!

Laurel

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Laurel,

The fact that your breaking out means it's relasing toxins from your body.

If you can only handle one packet/day, so be it. You'll just have to wait a

long time for your functional glutathione levels to return to normal. 4

packets gets you there in a month; two packets takes about 6 months. I

don't know if 1 packet a day alone would ever get you there but eventually

you will be able to tolerate at least two which will put you on the upward

track. Cheney did recommend I take 4 packets for a month for fastest

recovery as I had no adverse reaction to initial doses of 2 packets/day.

Good luck, Steve Bullock

Re: Cortef

>

> Thanks to all who responded to my question about Cortef. I really

appreciate

> everyone's input. I think I'm going to opt to not take the Cortef at this

> point. It doesn't sound like its worth the risk. About a year ago I

tried

> an adrenal glandular extract for several months -- It didn't help at the

> time, but I'm a lot sicker now so it may be worth a second try in lieu of

the

> Cortef. Thanks again everyone for your input.

>

> Steve -- you recommended that I take 4 packets of Immunocal or Imuplus to

> start. Is this also Cheney's recommendation? I have been taking one

packet

> of Immunocal for several months now. Due to my serious reaction to

Colostrum

> (I went from working full-time with CFS to being almost completely

bedridden

> after just one dose), I'm concerned about trying Immunopro or uping my

dose

> of Immunocal too much. Prior to the Colostrum experience, I saw some

> improvement with the whey (less relapses, slightly more energy) but was

also

> breaking out all over the place. Now I'm still breaking out but don't see

> any improvement. Any thoughts on all of this?

>

> Thanks!

> Laurel

>

> 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.

>

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> " Mike " <mcamp10139@...> wrote:

>

>Re Cortrex, I would try that supplement before Cortef. however,

>one word of warning, I have come to believe that licore extract (LE)

>has been giving me no benefit and causing my immune system to be

>less effective. Please note, I have chronic low WBC counts. I have

>been meaning to post about this for quite a while, but for those of

>us with low WBC counts, LE COULD suppress the immune system enough to

>cause some harm. I was only taking about 2 grams per week of Baschetti,

>and since I have stopped I haven't been sick at all.

>Anyway, back to the Cortef, I agree w/ S. Bullock. You can also get

>an ultrasound done on your adrenal glands. There was a study done

>showing that some of the most severe cases of CFS had adrenal galnds that

>were only 50% the size of normal! Jan may have a link to that study as it

>was discussed widely on Dave's old group.

Here you are:

Bron:

http://www.ncbi.nlm.nih.gov/htbinpost/Entrez/query?uid=10451910 & form=6 & db=m &

Dopt=b

Jan van Roijen <access@...>

Voor: MEInfo Net, maandag 23 augustus 1999

***************************************

Psychoneuroendocrinology 1999 Oct;24(7):75968

Small adrenal glands in chronic fatigue syndrome: a

preliminary computer tomography study.

LV, Teh J, Reznek R, A, Sohaib A, Dinan TG

Department of Psychiatry, Trinity College Dublin Medical School, St.

's, Hospital, Ireland.

[Medline record in process]

No inclusive or satisfactory biomedical explanation for chronic fatigue

syndrome (CFS) has as yet been forwarded. Recent research suggests

that a dysregulated hypothalamicpituitaryadrenal axis (HPA) may be

contributory, and in particular that there may be diminished forward

drive and adrenal understimulation. In this preliminary study we wished

to examine a cohort of CFS patients in whom evidence for such

hypofunctioning was found. Our aim was to establish whether these

patients had altered adrenal gland size. Patients were recruited from a

fatigue clinic. Those who fulfilled the Centre for Disease Control and

Prevention (CDC) criteria underwent a 1 microgram adrenocorticotropin

(ACTH) stimulation test, a test of adrenal gland functioning. Eight subjects

(five females, three males) with a subnormal response to this test underwent

a computer tomography (CT) adrenal gland assessment. Measurements

were compared with those from a group of 55 healthy subjects. The right

and left adrenal gland bodies were reduced by over 50% in the CFS

subjects indicative of significant adrenal atrophy in a group of CFS patients

with abnormal endocrine parameters. This is the first study to use imaging

methods to measure adrenal gland size in CFS. It is a limitation of this

study that a selected CFS sample was employed. A future larger study

would optimally employ an unselected cohort of CFS patients. This study

has implications not only for the elucidation of CFS pathophysiology, but

also for possible therapeutic strategies.

PMID: 10451910, UI: 99381217

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............I am sure there has to be something constitutional about how we

react to trauma, but I believe it has even more to do with the severity and

duration of the trauma. She was talking about even one spanking making a

permanent elevation in the cortisol.....

Wow, if it only takes ONE, that must be the answer to all my health issues

; ^ ) My parents were definitely in the " spare the rod and spoil the

child " camp, to the point where, once my dad had had too much to eat and sat

back in his chair to loosen his belt. No-one at the table understood why I

shot out of my chair and ran to my room to hide!

- Theresa

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on 9/16/00 10:22 PM, Holt at catherine_holt@... wrote:

> Ginseng and pantethine are also good for the adrenals.

>

> For women with endometriosis, watch out for ginseng, sterinols, and

> licorice. Ginseng and licorice are both estrogenic; I get a lot of pain

> with both of them. Sterinols did me in, too. Too bad, because they're good

> herbs for most people.

Hi ,

Although licorice extract contains estrogenic compounds, glycyrrhizic acid,

the primary active ingredient (the one that increases cortisol availability

by slowing its breakdown) in licorice extract is actually anti-estrogenic.

One way to avoid the estrogenic compounds is to purchase either pure

glycyrrhizic acid or monoammonium glycyrrhizinate. The latter is available

from Dave --and a little goes a LONG way. It is close to pure

glycyrrhizic acid.

Hud

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  • 6 months later...
Guest guest

Hello all -

I have been one of the few advocates of low-dose

cortef on this list. I took it for a full year, most

of the time just 5 mg/day but up to as much as 20 for

a while. I think it helped my adrenals to recover

from exhaustion; they test normally now. But my

rheumatologist is adamantly opposed to any steroid

use, including prednisone, even for her lupus

patients, because of the long-term damage they can do

to bones (increased chance of osteoporosis). I took

high doses of calcium while I was on cortef and

continue to do so now, and I didn't have any

difficulty stopping use of this drug last year.

FWIW - Jennie

__________________________________________________

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  • 4 months later...
Guest guest

Elena, per your question below:

I take 15mg of cortef daily, 10 with breakfast and 5

with lunch. My doctor tells me it is less than the

body would normally produce if it were healthy. It

has made a huge difference in my energy level and we

don't believe will have a negative effect in the long

run. There is some disagreement in the medical

community (and on this list) about long-term effects.

I do supplement with calcium, vitamin D, and vitamin E

to prevent bone loss.

Good luck - Jennie

********************************

Some MD give Cortef for Adrenal Exhaustion (low

cortisol).Some patients have told here, that in the

long run, it is dangerous and

leads to total shut down of our adrenals.

what do you think about this?

I have adrenal exhaustion now, after 17 yeras of CFS,

after getting Mononucleose in 1983 , an inmune sytem

over and under activated at the same time, etc

Thank you

Elena

__________________________________________________

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Guest guest

thank you

elena

cortef

> I think that there is a study out there that found giving folks 10mgs of

> cortef a day suppress the natural response of the adrenal glands. However

a

> British study found the 5 mgs a day produce a benefit with no negative

> response, but the study last only one month. The question is how long have

> those of you on Cortef been on this drug.

>

>

> Steve

>

>

>

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Guest guest

Hi all -

I took cortef first for about a year, starting with 10

mg and going as high as 20 before stopping when my

adrenals tested normal again. About a year later, the

test showed they were low again, so I started back on

cortef and am currently taking 15mg/day. We do

re-tests about every six months to see how my adrenals

are doing and when they test normal I give my body a

break from the cortef until I need it again. Don't

know if this is an orthodox approach or if it will

prevent long-term problems but it works for me right

now.

Best, Jennie

--- wrote:

> 7. cortef

> From: " "

> <moores@...>

>

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  • 2 years later...

Radha,

I have been taking 10mg/day for the last two weeks. I do feel a

little more...bla (:P

I believe this effect is supposed to wear off after awhile (how long,

I don't know), when your brain gets used to having more cortisol

activity. Then you feel better...I hope.

Zippy

------------------------------------------------------

> i just started cortef and wanted to know what dose most of you take

and how

> long it took to feel difference, and what benefits you

got.......i'm at 5mg.

> right now............and i worry that i get depressed as a side

> effect........since i did last time i tried it.........thanks for

help

> Radha

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  • 5 years later...

Some people it's magic and just makes them feel better, for me i have

alot of side effects, specifically major brain fog and cognitive

dysfunction, and it wears off too fast for me, having to dose every 2

hours and still get shaky now and then, hence being on a rather high

dose. Also I still have pretty much no energy on it which i thought i

would have lots of (well i get small windows but nothing major). Most

people tolerate it better than me however.

~Chris.

>

>

> chris

> why is it hard to be on?

> tnx

> L.

>

> Not sure how

> > long I'll be on it, hoping not forever though, its hard to be on.

> >

> > ~Chris.

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If anyone is interested knowing the affect low dose hydrocortisone would have on

their condition, try drinking some instant coffee.  Epecially useful in

afternoon.  It raises blood cortisol levels moderately.  It has to be instant

coffee.  Cortef/hydrocortisone can be very difficult to get off once you've been

taking it a while.  It's a steroid.  Good luck, Steve B.

From: <csharpham@...>

Subject: Re: cortef

Date: Wednesday, February 25, 2009, 8:41 AM

Some people it's magic and just makes them feel better, for me i have

alot of side effects, specifically major brain fog and cognitive

dysfunction, and it wears off too fast for me, having to dose every 2

hours and still get shaky now and then, hence being on a rather high

dose. Also I still have pretty much no energy on it which i thought i

would have lots of (well i get small windows but nothing major). Most

people tolerate it better than me however.

~Chris.

>

>

> chris

> why is it hard to be on?

> tnx

> L.

>

> Not sure how

> > long I'll be on it, hoping not forever though, its hard to be on.

> >

> > ~Chris.

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