Re: Salt/vitamin C--ace deletion

[Guest guest]

Hi Jill,

Yes I am ACE++ and I am in the reverse mode and not sure if the Salt/C

protocal put me there. I was on it for a few months and it ended 5 months ago.

My adrenals are actually worse now.

Now I have to figure out how to level things out again beside taking Cortef

and Florinef.

I heard excercise helps, but that can have reverse effects, too.

Best wishes, Sue T

jill1313 <jenbooks13@...> wrote:

I have concluded that people should find out first if they have an ACE

deletion before going on salt and vitamin C. It is more likely in a

chronic fatigue population, whatever the cause, imo. An ace deletion

has several effects, but one of them is to dump potassium and retain

too much sodium. Apparently if this goes on long enough that might

reverse, along with depletion of adrenals, but in any case, anyone

with an ACE deletion who could be retaining sodium and dumping

potassium should not be taking high doses of salt, imho.

[Guest guest]

HI Jill/Sue,

I was having terrible leg cramps and started eating bananas as a snack. The

leg cramps stopped. I also backed down on my salt. I am also ACE deletion +/+.

Sue on that note, the genetic by pass book recommends phosphatidyl serine to

help control excess cortisol, for the ACE deletion. I feel this would help me.

Have you tried this??? Did you wait until after you had your ammonia more under

control???

Thank you for your help,

Janet

Sue T <morabshadow@...> wrote:

Hi Jill,

Yes I am ACE++ and I am in the reverse mode and not sure if the Salt/C protocal

put me there. I was on it for a few months and it ended 5 months ago. My

adrenals are actually worse now.

Now I have to figure out how to level things out again beside taking Cortef and

Florinef.

I heard excercise helps, but that can have reverse effects, too.

Best wishes, Sue T

jill1313 <jenbooks13@...> wrote:

I have concluded that people should find out first if they have an ACE

deletion before going on salt and vitamin C. It is more likely in a

chronic fatigue population, whatever the cause, imo. An ace deletion

has several effects, but one of them is to dump potassium and retain

too much sodium. Apparently if this goes on long enough that might

reverse, along with depletion of adrenals, but in any case, anyone

with an ACE deletion who could be retaining sodium and dumping

potassium should not be taking high doses of salt, imho.

[Guest guest]

Hi Janet,

I have to watch the Phos serine cause my cortisol is too low. . . it lowers it

even more. My adrenals are very fatigued . . I am the ACE++ where I am really

burnt out.

I know it is complicated. . . but we will all get there.

Best wishes,

Sue T

Janet s <jgstev716@...> wrote:

HI Jill/Sue,

I was having terrible leg cramps and started eating bananas as a snack. The leg

cramps stopped. I also backed down on my salt. I am also ACE deletion +/+.

Sue on that note, the genetic by pass book recommends phosphatidyl serine to

help control excess cortisol, for the ACE deletion. I feel this would help me.

Have you tried this??? Did you wait until after you had your ammonia more under

control???

Thank you for your help,

Janet

Sue T <morabshadow@...> wrote:

Hi Jill,

Yes I am ACE++ and I am in the reverse mode and not sure if the Salt/C protocal

put me there. I was on it for a few months and it ended 5 months ago. My

adrenals are actually worse now.

Now I have to figure out how to level things out again beside taking Cortef and

Florinef.

I heard excercise helps, but that can have reverse effects, too.

Best wishes, Sue T

jill1313 <jenbooks13@...> wrote:

I have concluded that people should find out first if they have an ACE

deletion before going on salt and vitamin C. It is more likely in a

chronic fatigue population, whatever the cause, imo. An ace deletion

has several effects, but one of them is to dump potassium and retain

too much sodium. Apparently if this goes on long enough that might

reverse, along with depletion of adrenals, but in any case, anyone

with an ACE deletion who could be retaining sodium and dumping

potassium should not be taking high doses of salt, imho.

[Guest guest]

How about taking potassium? I take something nobody else I know takes,

and I can't give you a good reason for it. It's made by the company

that makes bromase, I think they're bio-tech. They basically make

supplements to order for docs. Not sure how I found them, and have no

good reason why I bought their K-III potassium, which blends 3

different types, but I do know that I sometimes just 'eat' the powder.

I asked them once why they made this product and they said a few

doctors had wanted it and that it's not that popular. But it feels

right to me.

> I have concluded that people should find out first if they

have an ACE

> deletion before going on salt and vitamin C. It is more likely in a

> chronic fatigue population, whatever the cause, imo. An ace deletion

> has several effects, but one of them is to dump potassium and retain

> too much sodium. Apparently if this goes on long enough that might

> reverse, along with depletion of adrenals, but in any case, anyone

> with an ACE deletion who could be retaining sodium and dumping

> potassium should not be taking high doses of salt, imho.

>

>

>

>

>

>

>

[Guest guest]

Interesting that you both did badly on salt or salt/c with the ace

deletion.

I do like salt, but the salt/c program...I felt like I was leaching

minerals. I tried it a few times, and I would eat a whole jar of

tahini, or end up making potato/celery soup in the middle of summer.

To put it mildly, I can't regulate that much sodium (6-12 grams in

liquid). Probably some folks on salt/c who get kidney pain, or the way

Sara reacted, have the ace deletion and it is dangerous for them. For

others, it might be just the ticket. Genetics is individual (a cliche,

sorry)

> I have concluded that people should find out first if they have an ACE

> deletion before going on salt and vitamin C. It is more likely in a

> chronic fatigue population, whatever the cause, imo. An ace deletion

> has several effects, but one of them is to dump potassium and retain

> too much sodium. Apparently if this goes on long enough that might

> reverse, along with depletion of adrenals, but in any case, anyone

> with an ACE deletion who could be retaining sodium and dumping

> potassium should not be taking high doses of salt, imho.

>

>

[Guest guest]

I am excreting lots of Potassium . . so not sure if I would want to increase

what I am doing at this point. Great suggestion for someone who needs Potasium,

though.

Thanks,

Sue T

jill1313 <jenbooks13@...> wrote:

How about taking potassium? I take something nobody else I know takes,

and I can't give you a good reason for it. It's made by the company

that makes bromase, I think they're bio-tech. They basically make

supplements to order for docs. Not sure how I found them, and have no

good reason why I bought their K-III potassium, which blends 3

different types, but I do know that I sometimes just 'eat' the powder.

I asked them once why they made this product and they said a few

doctors had wanted it and that it's not that popular. But it feels

right to me.

> I have concluded that people should find out first if they

have an ACE

> deletion before going on salt and vitamin C. It is more likely in a

> chronic fatigue population, whatever the cause, imo. An ace deletion

> has several effects, but one of them is to dump potassium and retain

> too much sodium. Apparently if this goes on long enough that might

> reverse, along with depletion of adrenals, but in any case, anyone

> with an ACE deletion who could be retaining sodium and dumping

> potassium should not be taking high doses of salt, imho.

>

>

>

>

>

>

>

[Guest guest]

I see what you mean by you went into the reverse mode. Remember,

you're much smarter about Yasko than me at this point . I'm still

learning. Does she have suggestions for what to do when that happens?

It looks like you have to balance your minerals and kidney function:

Support for ACE mutations in this pathway can include Kidney Support

RNA, OraKidney, OraAdrenal, Stress and Anxiety Support RNA. BioNativus

multiminerals can be used for a general mineral support.

I don't know what all those are. If you can afford it, perhaps some

glandulars would be in order? Natcell(atrium-biotech) makes a frozen

adrenal extract. At one point I used their frozen thymus and I wish I

could still use it but it was very expensive. They may also make a

less expensive adrenal extract?

> > I have concluded that people should find out first if they

> have an ACE

> > deletion before going on salt and vitamin C. It is more likely in a

> > chronic fatigue population, whatever the cause, imo. An ace deletion

> > has several effects, but one of them is to dump potassium and retain

> > too much sodium. Apparently if this goes on long enough that might

> > reverse, along with depletion of adrenals, but in any case, anyone

> > with an ACE deletion who could be retaining sodium and dumping

> > potassium should not be taking high doses of salt, imho.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

The ACE test is on Yasko, yes?

Because I'm re-creating Sue's experience almost exactly. Recup/C (and

not all that much of it, comparatively) seems to have really messed

up my adrenals -- especially the norepinepherine part. Not that they

were all that great to begin with: I really couldn't afford to take

this hit.

I'm going on Florinef next week (just gotta get it from the

pharmacy). No idea if I can handle it -- Cortef was miserable -- but

here's hoping.

Sara

On Aug 25, 2006, at 4:11 PM, Sue T wrote:

> Hi Jill,

> Yes I am ACE++ and I am in the reverse mode and not sure if the

> Salt/C protocal put me there. I was on it for a few months and it

> ended 5 months ago. My adrenals are actually worse now.

> Now I have to figure out how to level things out again beside

> taking Cortef and Florinef.

> I heard excercise helps, but that can have reverse effects, too.

> Best wishes, Sue T

>

> jill1313 <jenbooks13@...> wrote:

> I have concluded that people should find out first if

> they have an ACE

> deletion before going on salt and vitamin C. It is more likely in a

> chronic fatigue population, whatever the cause, imo. An ace deletion

> has several effects, but one of them is to dump potassium and retain

> too much sodium. Apparently if this goes on long enough that might

> reverse, along with depletion of adrenals, but in any case, anyone

> with an ACE deletion who could be retaining sodium and dumping

> potassium should not be taking high doses of salt, imho.

>

>

>

>

>

>

>

[Guest guest]

Yes. It would seem weird if you *didn't* have an ACE deletion on

Yasko. I will be really curious.

> > I have concluded that people should find out first if

> > they have an ACE

> > deletion before going on salt and vitamin C. It is more likely in a

> > chronic fatigue population, whatever the cause, imo. An ace deletion

> > has several effects, but one of them is to dump potassium and retain

> > too much sodium. Apparently if this goes on long enough that might

> > reverse, along with depletion of adrenals, but in any case, anyone

> > with an ACE deletion who could be retaining sodium and dumping

> > potassium should not be taking high doses of salt, imho.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jill,

Isupport the adrenals with her Ora Adrenal, Ora Kidney, Anxiety RNA, light to

moderate exercise, stay off the Internet(just kidding . . . well maybe a little

bit), stress reduction(yeah, right!), rest.

Jill, you will by far surpass me with learning about Yasko cause I have a

hard time learning . . . I have to read, read, read, and experience it till it

sticks. You are a " Natural " . I have to be determined or I would never " get it " .

My GUT instinct is my leader . . . GET TO THE BOTTOM no " Band-aid " treatments.

Best wishes,

Sue T

jill1313 <jenbooks13@...> wrote:

I see what you mean by you went into the reverse mode. Remember,

you're much smarter about Yasko than me at this point . I'm still

learning. Does she have suggestions for what to do when that happens?

It looks like you have to balance your minerals and kidney function:

Support for ACE mutations in this pathway can include Kidney Support

RNA, OraKidney, OraAdrenal, Stress and Anxiety Support RNA. BioNativus

multiminerals can be used for a general mineral support.

I don't know what all those are. If you can afford it, perhaps some

glandulars would be in order? Natcell(atrium-biotech) makes a frozen

adrenal extract. At one point I used their frozen thymus and I wish I

could still use it but it was very expensive. They may also make a

less expensive adrenal extract?

> > I have concluded that people should find out first if they

> have an ACE

> > deletion before going on salt and vitamin C. It is more likely in a

> > chronic fatigue population, whatever the cause, imo. An ace deletion

> > has several effects, but one of them is to dump potassium and retain

> > too much sodium. Apparently if this goes on long enough that might

> > reverse, along with depletion of adrenals, but in any case, anyone

> > with an ACE deletion who could be retaining sodium and dumping

> > potassium should not be taking high doses of salt, imho.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Sara,

I think I need Florinef cause everytime I bend over then lift my head I get

dizzy. When I walk or excersie I am fine, but when I slow down or stop it all

comes back. It is sort of like the blood or oxygen is not regulated. I tried

Florinef a few years ago when I was seeing Dr. Holtorf at FFC and it made me

swell up and my feet tingle . See because of my Liver enzymes issues I don't

detox these steroid hormones well.

I take 2.5 mg Cortef just to give my adrenals a tiny boost now and then.

Any way . . . I wish you the best with trying it and please keep us posted.

Did you have the Detoxigenomics done . . . can you detox steroids? You may

want to double check.

Pleasant dreams,

Sue T

Mercuria <mercuria@...> wrote:

The ACE test is on Yasko, yes?

Because I'm re-creating Sue's experience almost exactly. Recup/C (and

not all that much of it, comparatively) seems to have really messed

up my adrenals -- especially the norepinepherine part. Not that they

were all that great to begin with: I really couldn't afford to take

this hit.

I'm going on Florinef next week (just gotta get it from the

pharmacy). No idea if I can handle it -- Cortef was miserable -- but

here's hoping.

Sara

On Aug 25, 2006, at 4:11 PM, Sue T wrote:

> Hi Jill,

> Yes I am ACE++ and I am in the reverse mode and not sure if the

> Salt/C protocal put me there. I was on it for a few months and it

> ended 5 months ago. My adrenals are actually worse now.

> Now I have to figure out how to level things out again beside

> taking Cortef and Florinef.

> I heard excercise helps, but that can have reverse effects, too.

> Best wishes, Sue T

>

> jill1313 <jenbooks13@...> wrote:

> I have concluded that people should find out first if

> they have an ACE

> deletion before going on salt and vitamin C. It is more likely in a

> chronic fatigue population, whatever the cause, imo. An ace deletion

> has several effects, but one of them is to dump potassium and retain

> too much sodium. Apparently if this goes on long enough that might

> reverse, along with depletion of adrenals, but in any case, anyone

> with an ACE deletion who could be retaining sodium and dumping

> potassium should not be taking high doses of salt, imho.

>

>

>

>

>

>

>

[Guest guest]

On Aug 25, 2006, at 9:12 PM, Sue T wrote:

> Hi Sara,

>

> I think I need Florinef cause everytime I bend over then lift my

> head I get dizzy.

Right. That's orthostatic intolerance. I've been in bed through July

& August (since the Recup/C thing) because my OI is so bad I can

barely stand for more than 90 seconds. Even sitting in church for an

hour with my feet on the floor is too much. I'm either sitting with

feet up, or slow walking. There's no in between.

In the meantime, I've completely deconditioned, and my blood sugar

has gone way up, which is what happens after two months in bed. And,

as mentioned, my norepinepherine/dopamine has tanked, taking my mood

with it.

All of this goes away if I can find a non-steroid way to goose my

adrenals. It's been the ongoing issue for years: they won't work on

their own, but I can't take any of the many fine drugs that would

readily fix the problem.

> When I walk or excersie I am fine, but when I slow down or stop it

> all comes back. It is sort of like the blood or oxygen is not

> regulated. I tried Florinef a few years ago when I was seeing Dr.

> Holtorf at FFC and it made me swell up and my feet tingle . See

> because of my Liver enzymes issues I don't detox these steroid

> hormones well.

>

> I take 2.5 mg Cortef just to give my adrenals a tiny boost now

> and then.

> Any way . . . I wish you the best with trying it and please keep

> us posted.

>

> Did you have the Detoxigenomics done

Talked to my doctor on Thursday about ordering it for me. He agreed.

Which means I'll be getting around to it sometime in the weeks ahead.

> . . . can you detox steroids? You may want to double check.

Don't need to. I've never been able to handle steroids in any form.

Probably a pretty serious CYP3A4 or CYP21C1 issue, Rich guesses;

we'll have confirmation of what's going on soon enough. But there's

no question cortisone makes me nuts, and SAMe makes me sick, and...

That's why I'm so nervous about the Florinef. However, it's such a

tiny dose -- even a fraction of a fraction of the smallest Cortef --

so I'm hoping that taking a fractional dose once or twice a week may

be tolerable.

I took DLPA this morning, just to see. So far, so good. At least my

mood lifted a bit, and I found the focus to finish a blog entry

that's been hanging fire for a week (it's a follow-on to one that

made it to the front page at DailyKos last week. All this, and I'm

becoming an A-list blogger, too...).

But it's a pretty harsh ride so far. I'm going to wait several days,

maybe a week, before taking more -- and then only do half as much. I

suspect this could be a lot like SAMe: works good, until it just

wipes me.

Sara

[Guest guest]

Well, thanx, but I don't know...it's very complex stuff.

It's a lot different than the simple DAN! approach, which on its own

has merit. I feel like my brain turns into a sieve sometimes.

BTW my water titration of sleeping pill is working well and I decided

to slow it way down. I can go down by .3 milligrams and not feel too

bad. My first 'taper' was 3 milligrams and my body freaked out for 5 days.

Still, I'm up at 4 a.m. as usual.

> > > I have concluded that people should find out first if they

> > have an ACE

> > > deletion before going on salt and vitamin C. It is more likely in a

> > > chronic fatigue population, whatever the cause, imo. An ace deletion

> > > has several effects, but one of them is to dump potassium and retain

> > > too much sodium. Apparently if this goes on long enough that might

> > > reverse, along with depletion of adrenals, but in any case, anyone

> > > with an ACE deletion who could be retaining sodium and dumping

> > > potassium should not be taking high doses of salt, imho.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Geez, I'm really sorry this happened to you both.

Sara, if you can afford it (which to my recollection, you might be

able to) consider getting the frozen natcell. Google " natcell frozen

adrenal. " It's ridiculously expensive, however there is a doctor's

price that is cheaper if your doc is willing to order it. Even so its

so expensive. But its the real thing, their frozen products, are

really like getting the gland. A mediocre second best, but still

helpful, would be a typical adrenal extract. I really believe in these

cases, giving a gland its actual building blocks is important. We used

to eat all of an animal, not just the muscle. We ate the glands. That

was healthy.

The thymus was really good. In fact, the last week or so I've felt my

body 'wondering' where its thymus was (it's beenmonths). I don't think

one's cells understand " I am on a budget " . They figure you can get

them frozen thymus just the way you get feta cheese, beefsteak

tomatoes or whatever else one craves at the moment .

>

> > Hi Sara,

> >

> > I think I need Florinef cause everytime I bend over then lift my

> > head I get dizzy.

>

> Right. That's orthostatic intolerance. I've been in bed through July

> & August (since the Recup/C thing) because my OI is so bad I can

> barely stand for more than 90 seconds. Even sitting in church for an

> hour with my feet on the floor is too much. I'm either sitting with

> feet up, or slow walking. There's no in between.

>

> In the meantime, I've completely deconditioned, and my blood sugar

> has gone way up, which is what happens after two months in bed. And,

> as mentioned, my norepinepherine/dopamine has tanked, taking my mood

> with it.

>

> All of this goes away if I can find a non-steroid way to goose my

> adrenals. It's been the ongoing issue for years: they won't work on

> their own, but I can't take any of the many fine drugs that would

> readily fix the problem.

>

> > When I walk or excersie I am fine, but when I slow down or stop it

> > all comes back. It is sort of like the blood or oxygen is not

> > regulated. I tried Florinef a few years ago when I was seeing Dr.

> > Holtorf at FFC and it made me swell up and my feet tingle . See

> > because of my Liver enzymes issues I don't detox these steroid

> > hormones well.

> >

> > I take 2.5 mg Cortef just to give my adrenals a tiny boost now

> > and then.

> > Any way . . . I wish you the best with trying it and please keep

> > us posted.

> >

> > Did you have the Detoxigenomics done

>

> Talked to my doctor on Thursday about ordering it for me. He agreed.

> Which means I'll be getting around to it sometime in the weeks ahead.

>

> > . . . can you detox steroids? You may want to double check.

>

> Don't need to. I've never been able to handle steroids in any form.

> Probably a pretty serious CYP3A4 or CYP21C1 issue, Rich guesses;

> we'll have confirmation of what's going on soon enough. But there's

> no question cortisone makes me nuts, and SAMe makes me sick, and...

>

> That's why I'm so nervous about the Florinef. However, it's such a

> tiny dose -- even a fraction of a fraction of the smallest Cortef --

> so I'm hoping that taking a fractional dose once or twice a week may

> be tolerable.

>

> I took DLPA this morning, just to see. So far, so good. At least my

> mood lifted a bit, and I found the focus to finish a blog entry

> that's been hanging fire for a week (it's a follow-on to one that

> made it to the front page at DailyKos last week. All this, and I'm

> becoming an A-list blogger, too...).

>

> But it's a pretty harsh ride so far. I'm going to wait several days,

> maybe a week, before taking more -- and then only do half as much. I

> suspect this could be a lot like SAMe: works good, until it just

> wipes me.

>

> Sara

>

[Guest guest]

How do glandulars work? I'm having trouble deciding whether to try the Dr. Amy's

ora products (which are glandulars). I posted about it on autismanswer, but

since you guys are talking about it here, maybe you can help me.

Armour thyroid is a glandular, right? So is that how all glandulars

work--stimulating or replacing the activity of the gland?

Would taking ora-pancreas, for example, create more insulin and so be bad for

someone who has Type II diabetes or pre-diabetes? And would ora-adrenal work the

same way as replacement cortisol, just not as strong? I know my adrenals are

bad, but a few years ago when I tried the low level cortisol it helped at first

but then made them a lot worse. Does anyone understand how that fits in with the

ACE deletion stuff?

Sue, I saw a post from Dr. Amy to you about cortisol stuff and she was talking

about BH4. Has the BH4 helped your adrenals? It sounds like you still have

problems with them.

Do those of you who know you have ACE deletions have high or low blood

pressure? I'm sooo confused about all the ACE stuff. My UAA showed very low

sodium and very high potasium which are possible indicators of an ACE deletion.

And I have a lot of adrenal problems. But I have low blood pressure. High

adolsterone should create high blood pressure I think. Doesn't Cheney talk about

CFSers having low adolsterone and that's why florinef and some other things can

be problematic because they lower adolsterone and that's what keeps up blood

pressure and blood volume?

Thanks,

Trina

jill1313 <jenbooks13@...> wrote:

Geez, I'm really sorry this happened to you both.

Sara, if you can afford it (which to my recollection, you might be

able to) consider getting the frozen natcell. Google " natcell frozen

adrenal. " It's ridiculously expensive, however there is a doctor's

price that is cheaper if your doc is willing to order it. Even so its

so expensive. But its the real thing, their frozen products, are

really like getting the gland. A mediocre second best, but still

helpful, would be a typical adrenal extract. I really believe in these

cases, giving a gland its actual building blocks is important. We used

to eat all of an animal, not just the muscle. We ate the glands. That

was healthy.

The thymus was really good. In fact, the last week or so I've felt my

body 'wondering' where its thymus was (it's beenmonths). I don't think

one's cells understand " I am on a budget " . They figure you can get

them frozen thymus just the way you get feta cheese, beefsteak

tomatoes or whatever else one craves at the moment .

Recent Activity

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[Guest guest]

-

May I ask which lab and what test detects this ACE gene?

Would the Genovations detox panel do it?

thanks,

Helen

-- In , Sue T <morabshadow@...>

wrote:

>

> Hi Sara,

>

> I think I need Florinef cause everytime I bend over then lift my

head I get dizzy. When I walk or excersie I am fine, but when I slow

down or stop it all comes back. It is sort of like the blood or

oxygen is not regulated. I tried Florinef a few years ago when I was

seeing Dr. Holtorf at FFC and it made me swell up and my feet

tingle . See because of my Liver enzymes issues I don't detox these

steroid hormones well.

>

> I take 2.5 mg Cortef just to give my adrenals a tiny boost now

and then.

> Any way . . . I wish you the best with trying it and please keep

us posted.

>

> Did you have the Detoxigenomics done . . . can you detox

steroids? You may want to double check.

>

> Pleasant dreams,

> Sue T

>

> Mercuria <mercuria@...> wrote:

> The ACE test is on Yasko, yes?

>

>

[Guest guest]

Hi Sara,

I just want to mention that this has really only been a problems since the

Salt/C and when I start detoxing metals and killing virus and icrobes. That is

when I up my supplements for detox.

Usually when I cut back on detoxing I do improve. I feel I just need to get

through the next few months with the Yasko program and then I will give my body

a break. I am truly hoping my adrenals will improve in the long run.

Best wishes,

Sue T

Mercuria <mercuria@...> wrote:

On Aug 25, 2006, at 9:12 PM, Sue T wrote:

> Hi Sara,

>

> I think I need Florinef cause everytime I bend over then lift my

> head I get dizzy.

Right. That's orthostatic intolerance. I've been in bed through July

& August (since the Recup/C thing) because my OI is so bad I can

barely stand for more than 90 seconds. Even sitting in church for an

hour with my feet on the floor is too much. I'm either sitting with

feet up, or slow walking. There's no in between.

In the meantime, I've completely deconditioned, and my blood sugar

has gone way up, which is what happens after two months in bed. And,

as mentioned, my norepinepherine/dopamine has tanked, taking my mood

with it.

All of this goes away if I can find a non-steroid way to goose my

adrenals. It's been the ongoing issue for years: they won't work on

their own, but I can't take any of the many fine drugs that would

readily fix the problem.

> When I walk or excersie I am fine, but when I slow down or stop it

> all comes back. It is sort of like the blood or oxygen is not

> regulated. I tried Florinef a few years ago when I was seeing Dr.

> Holtorf at FFC and it made me swell up and my feet tingle . See

> because of my Liver enzymes issues I don't detox these steroid

> hormones well.

>

> I take 2.5 mg Cortef just to give my adrenals a tiny boost now

> and then.

> Any way . . . I wish you the best with trying it and please keep

> us posted.

>

> Did you have the Detoxigenomics done

Talked to my doctor on Thursday about ordering it for me. He agreed.

Which means I'll be getting around to it sometime in the weeks ahead.

> . . . can you detox steroids? You may want to double check.

Don't need to. I've never been able to handle steroids in any form.

Probably a pretty serious CYP3A4 or CYP21C1 issue, Rich guesses;

we'll have confirmation of what's going on soon enough. But there's

no question cortisone makes me nuts, and SAMe makes me sick, and...

That's why I'm so nervous about the Florinef. However, it's such a

tiny dose -- even a fraction of a fraction of the smallest Cortef --

so I'm hoping that taking a fractional dose once or twice a week may

be tolerable.

I took DLPA this morning, just to see. So far, so good. At least my

mood lifted a bit, and I found the focus to finish a blog entry

that's been hanging fire for a week (it's a follow-on to one that

made it to the front page at DailyKos last week. All this, and I'm

becoming an A-list blogger, too...).

But it's a pretty harsh ride so far. I'm going to wait several days,

maybe a week, before taking more -- and then only do half as much. I

suspect this could be a lot like SAMe: works good, until it just

wipes me.

Sara

[Guest guest]

Hi Trina,

I will try and answer some of your questions below.

Sue T

> Geez, I'm really sorry this happened to you both.

>

> Sara, if you can afford it (which to my recollection, you might be

> able to) consider getting the frozen natcell. Google " natcell

frozen

> adrenal. " It's ridiculously expensive, however there is a doctor's

> price that is cheaper if your doc is willing to order it. Even so

its

> so expensive. But its the real thing, their frozen products, are

> really like getting the gland. A mediocre second best, but still

> helpful, would be a typical adrenal extract. I really believe in

these

> cases, giving a gland its actual building blocks is important. We

used

> to eat all of an animal, not just the muscle. We ate the glands.

That

> was healthy.

>

> The thymus was really good. In fact, the last week or so I've felt

my

> body 'wondering' where its thymus was (it's beenmonths). I don't

think

> one's cells understand " I am on a budget " . They figure you can get

> them frozen thymus just the way you get feta cheese, beefsteak

> tomatoes or whatever else one craves at the moment .

>

>

>

>

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[Guest guest]

Helen,

It is the Yasko SNP panel.

Janet

helen9jora <helenjora@...> wrote:

-

May I ask which lab and what test detects this ACE gene?

Would the Genovations detox panel do it?

thanks,

Helen

-- In , Sue T <morabshadow@...>

wrote:

>

> Hi Sara,

>

> I think I need Florinef cause everytime I bend over then lift my

head I get dizzy. When I walk or excersie I am fine, but when I slow

down or stop it all comes back. It is sort of like the blood or

oxygen is not regulated. I tried Florinef a few years ago when I was

seeing Dr. Holtorf at FFC and it made me swell up and my feet

tingle . See because of my Liver enzymes issues I don't detox these

steroid hormones well.

>

> I take 2.5 mg Cortef just to give my adrenals a tiny boost now

and then.

> Any way . . . I wish you the best with trying it and please keep

us posted.

>

> Did you have the Detoxigenomics done . . . can you detox

steroids? You may want to double check.

>

> Pleasant dreams,

> Sue T

>

> Mercuria <mercuria@...> wrote:

> The ACE test is on Yasko, yes?

>

>

[Guest guest]

Thanks Sue,

Yes, that's a good idea to ask Dr. Amy about low bp and blood volume when she

gets back.

Well, now I'm really confused--I thought the whole point of the ACE deletion

was that it raised aldosterone.

I can't find any references to aldosterone and florinef now, so I may have

made that up. I did find these two quotes from Cheney:

http://www.dfwcfids.org/medical/cheney/heart04.part2a.htm

“Angiotensin II has two receptors that we know of, and we only understand the

first, AT1. When Angiotensin II binds to AT1, it increases the hormone

Aldosterone, which in turn increases blood volume. Big issue! If you block AT1

with an ARB [like Benicar], down will go your Aldosterone, and down will go your

blood volume, and you could be in a heap of trouble. ARBs that bind to AT1 will

constrict blood volume.”

http://www.dfwcfids.org/medical/nmh.html

“Dr. Cheney has found that Florinef is not a good treatment option for NMH in

most CFIDS patients. Florinef forces potassium depletion and further suppresses

the HPA axis, which is already suppressed. Initial short-term benefits are seen

with Florinef, but they degrade over time. With extended use Florinef actually

exacerbates the disease in many patients.”

So I at least got the part of aldosterone raising blood volume right! But the

Florinef issue may not have anything to do with aldosterone. Maybe it would be

good for those of us with high potassium--although I still don't understand

whether high urine potassium means we have high potassium or our bodies are just

excreting it all so we actually have low potassium.

Trina

Sue T <morabshadow@...> wrote:

****I have low blood pressure and high potassium excretion and

normal sodium excretion. I now have both low aldosterone and low

normal cortisol.

Doesn't Cheney talk about CFSers having low adolsterone and that's

why florinef and some other things can be problematic because they

lower adolsterone and that's what keeps up blood pressure and blood

volume?

**** I thought it was the other way around . . the Florinef helped

raise Aldosterone. Now I am confused.

****We should post this on Yasko's site and see what she thinks

about improving the blood pressure and low blood volume issue . . .

maybe we will get more suggestions.

Sue T

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