Re: Vit D 1,25 levels - really confused

[Guest guest]

i just went back and looked at some of my records and i was actually

on the treatment for alomost 6 months...

> i want to say first that i tried the Benicar/ abx treatment back

last

> summer (when all this talk began to flourish)for about 4 months and

> had almost no reaction one way or another.

>

> i did the full treatment Benicar 40mg 4 x aday. mino eod and Zithro

> once a week. i just did not respond to this.

>

> my initial levels were:

>

> Vit D-125: 56

> Vit D-25 : 25 (about)

> ACE - normal

>

> as the treatment went along my values all came down. i got 125 down

> into the 20's and my 25D down to about 8 (which is below normal).

> eventhough my levels came down, i just felt no differnence health

> wise good or bad. so i stopped.

>

> i still see the DR who put me on this and he checked my levels

again:

>

> Vit D125: 70!!!!

> Vit D25: 13

>

> what gives??? anybody got some insight on this? i feel like maybe i

> should give it another shot, but it really did nothing for me the

> first go round, and is kinda expensive for the Benicar. is there

> another med to try that might be better...

>

> thanks

> bill

>

> PS - i had my NK cell activity checked too and it was sky high.

>

> 500 with a normal range of approx. (8-170)

[Guest guest]

In my opinion, when one trys a therapy for that long and see's no

improvement, or the trend is not in the direction you want it to go,

it's time for another plan.

As you know, there are people on this list for which Benicar was

like a miracle drug. But in your case, what ever your underlying

causes for your symptoms, it sounds like this therapy just wasn't

effective.

Barb

> i want to say first that i tried the Benicar/ abx treatment back

last

> summer (when all this talk began to flourish)for about 4 months and

> had almost no reaction one way or another.

>

> i did the full treatment Benicar 40mg 4 x aday. mino eod and Zithro

> once a week. i just did not respond to this.

>

> my initial levels were:

>

> Vit D-125: 56

> Vit D-25 : 25 (about)

> ACE - normal

>

> as the treatment went along my values all came down. i got 125 down

> into the 20's and my 25D down to about 8 (which is below normal).

> eventhough my levels came down, i just felt no differnence health

> wise good or bad. so i stopped.

>

> i still see the DR who put me on this and he checked my levels

again:

>

> Vit D125: 70!!!!

> Vit D25: 13

>

> what gives??? anybody got some insight on this? i feel like maybe i

> should give it another shot, but it really did nothing for me the

> first go round, and is kinda expensive for the Benicar. is there

> another med to try that might be better...

>

> thanks

> bill

>

> PS - i had my NK cell activity checked too and it was sky high.

>

> 500 with a normal range of approx. (8-170)

[Guest guest]

barb

thanks for the reply. i basically agree with you and that is why i

stopped.

but what could be making my 125-D levels be going so high. they are

now higher than ever.

also the levels did respond to the Benicar and they came down quite a

bit on the treatment.

i guess i am just concerned that my levels are higher now than they

have ever been, and there doesn't seem to be any other treatment that

corrects high levels of Vit D 125 other than the Benicar.

thanks

bill

> > i want to say first that i tried the Benicar/ abx treatment back

> last

> > summer (when all this talk began to flourish)for about 4 months

and

> > had almost no reaction one way or another.

> >

> > i did the full treatment Benicar 40mg 4 x aday. mino eod and

Zithro

> > once a week. i just did not respond to this.

> >

> > my initial levels were:

> >

> > Vit D-125: 56

> > Vit D-25 : 25 (about)

> > ACE - normal

> >

> > as the treatment went along my values all came down. i got 125

down

> > into the 20's and my 25D down to about 8 (which is below normal).

> > eventhough my levels came down, i just felt no differnence health

> > wise good or bad. so i stopped.

> >

> > i still see the DR who put me on this and he checked my levels

> again:

> >

> > Vit D125: 70!!!!

> > Vit D25: 13

> >

> > what gives??? anybody got some insight on this? i feel like maybe

i

> > should give it another shot, but it really did nothing for me the

> > first go round, and is kinda expensive for the Benicar. is there

> > another med to try that might be better...

> >

> > thanks

> > bill

> >

> > PS - i had my NK cell activity checked too and it was sky high.

> >

> > 500 with a normal range of approx. (8-170)

[Guest guest]

Bill, there's no evidence that I'm aware of that Benicar has any

effect on 1,25-D. There are people on the identical protocol for

even longer periods of time who actually saw their 1,25-D increase.

I've corresponded with some of those folks, and they swear they

followed the protocol precisely. I believe them.

The risks of taking Benicar at those dosages may be substantial, and

I say that having reviewed the question in some depth, looking at

parts of the FDA report that the moderators of that site have yet to

publically acknowledge as well as studies of the impact of this

whole class of drug on the immune system.

If my symptoms all disappeared on ARBS (they don't, they get worse)

I might very well decide the risk of taking such high doses of

Benicar was worthwhile. But in your case there is apparently no

benefit. Even a low risk of long-term side-effects is enough in my

mind to justify stopping.

If I were you, though, I'd try to taper off. Even though you aren't

aware of an effect, the drug impacts several body systems and you

don't want to jerk your body around more than necessary in the

transition.

I don't see anything in the science to suggest that Benicar brings

1,25-D levels down, nor do I see anything apart from unsubstantiated

claims by that protocol's advocates to indicate that bringing 1,25-D

down is a good idea. In fact, virtually all the major studies of the

last 30 odd years point the other way.

There may be a subset of patients with active, advanced Sarcoidosis

who really do need to keep those levels down because theirs can get

so high they suffer from hypercalcemia, which can make you feel just

horrid and cause increased calcium deposits in parts of the body

where you really don't want them.

I don't believe you can diagnose yourself as belonging to that

category because your 1,25-D levels are higher than the

arbitrary 'maximum healthy level' promoted by that website. Calcium

metabolism is complicated. More than 80% of all cases of

hypercalcemia turn out to be due to parathyroid hormone levels being

too high. Getting your PTH tested might be interesting, because PTH

and 1,25-D interact. In theory, your 'high' 1,25-D should be keeping

your PTH level nice and low.

The optimal level of vitamin D is being revised upward almost daily,

as new studies show protective effects against both cancer and auto-

immune-type diseases like MS and diabetes. Similarly, the latest

studies revise the maximum 'safe' dose of D upward by a factor of

10. If there's an accurate statement about 1,25-D on that website, I

haven't found it yet, and when things like tripling the risk of

certain cancers are involved accuracy is always nice.

Based on what you've told us about your 1,25-D level and the

constancy of your symptoms throughout its fluctuations, if it ain't

broke, why fix it?

The claims made about vitamin D on that website are at odds with

even the researchers they quote, and they ignore those who have done

the most work on vitamin D's effects on the immune system, like

Deluca and Hollick (sp?). Jacques Lemiere, whom they do cite, says

very clearly that even in Sarc patients where systemic levels of

1,25-D are very high, there is no loss of resistance to infection -

the exact opposite of what that website claims to be the case.

> > > i want to say first that i tried the Benicar/ abx treatment

back

> > last

> > > summer (when all this talk began to flourish)for about 4

months

> and

> > > had almost no reaction one way or another.

> > >

> > > i did the full treatment Benicar 40mg 4 x aday. mino eod and

> Zithro

> > > once a week. i just did not respond to this.

> > >

> > > my initial levels were:

> > >

> > > Vit D-125: 56

> > > Vit D-25 : 25 (about)

> > > ACE - normal

> > >

> > > as the treatment went along my values all came down. i got 125

> down

> > > into the 20's and my 25D down to about 8 (which is below

normal).

> > > eventhough my levels came down, i just felt no differnence

health

> > > wise good or bad. so i stopped.

> > >

> > > i still see the DR who put me on this and he checked my levels

> > again:

> > >

> > > Vit D125: 70!!!!

> > > Vit D25: 13

> > >

> > > what gives??? anybody got some insight on this? i feel like

maybe

> i

> > > should give it another shot, but it really did nothing for me

the

> > > first go round, and is kinda expensive for the Benicar. is

there

> > > another med to try that might be better...

> > >

> > > thanks

> > > bill

> > >

> > > PS - i had my NK cell activity checked too and it was sky

high.

> > >

> > > 500 with a normal range of approx. (8-170)

[Guest guest]

paul

thanks for the reply.

i just to want to make sure a few things are clear.

i am not on Benicar and have not been on it for about nine months. i

was on this protocol last summer and stayed on it for almost 6 months.

while i did the protocol, i really had no effect one way or the other

on my health.

but while on the Benicar, my 1,25-D levels came down quite a bit

(from 58 down into the 20's).

i just had my levels checked and was surprised to find that my 1,25-D

is now 70 which is higher than it has ever been. and also quite a bit

out of the the labs normal range (which has high of 60).

i'm not going by the protocols data for high values, i'm going by the

labs and by the lab my 1,25-D is quite high. also my 25-D is pretty

low, so there is something wrong here...

i am not a proponent of anything other than all of us getting well,

and it seems like coincidence doesn't really explain how my 1,25-D

have fluctuated.

i want to get the 1,25-D level down, but i just wish i got some

reaction from the Benicar. i didn't and that has me concerned about

going back on it.

in the nine months that i have been off Benicar my 1,25-D has jumped

alomost 50 points.

thanks

bill

> > > > i want to say first that i tried the Benicar/ abx treatment

> back

> > > last

> > > > summer (when all this talk began to flourish)for about 4

> months

> > and

> > > > had almost no reaction one way or another.

> > > >

> > > > i did the full treatment Benicar 40mg 4 x aday. mino eod and

> > Zithro

> > > > once a week. i just did not respond to this.

> > > >

> > > > my initial levels were:

> > > >

> > > > Vit D-125: 56

> > > > Vit D-25 : 25 (about)

> > > > ACE - normal

> > > >

> > > > as the treatment went along my values all came down. i got

125

> > down

> > > > into the 20's and my 25D down to about 8 (which is below

> normal).

> > > > eventhough my levels came down, i just felt no differnence

> health

> > > > wise good or bad. so i stopped.

> > > >

> > > > i still see the DR who put me on this and he checked my

levels

> > > again:

> > > >

> > > > Vit D125: 70!!!!

> > > > Vit D25: 13

> > > >

> > > > what gives??? anybody got some insight on this? i feel like

> maybe

> > i

> > > > should give it another shot, but it really did nothing for me

> the

> > > > first go round, and is kinda expensive for the Benicar. is

> there

> > > > another med to try that might be better...

> > > >

> > > > thanks

> > > > bill

> > > >

> > > > PS - i had my NK cell activity checked too and it was sky

> high.

> > > >

> > > > 500 with a normal range of approx. (8-170)

[Guest guest]

Winnsome.

If your 25-D is too low, then it will cause the hormone level of

the parathyroid to rise- and this can result in significant bone LOSS.

so, I'm not so sure I'd be worrying about the 1,25 D level right

now...

Are you eating a nornal amount of vitamind D now? or are you avoiding

D and UV exposure?

Barb

> > > > > i want to say first that i tried the Benicar/ abx treatment

> > back

> > > > last

> > > > > summer (when all this talk began to flourish)for about 4

> > months

> > > and

> > > > > had almost no reaction one way or another.

> > > > >

> > > > > i did the full treatment Benicar 40mg 4 x aday. mino eod

and

> > > Zithro

> > > > > once a week. i just did not respond to this.

> > > > >

> > > > > my initial levels were:

> > > > >

> > > > > Vit D-125: 56

> > > > > Vit D-25 : 25 (about)

> > > > > ACE - normal

> > > > >

> > > > > as the treatment went along my values all came down. i got

> 125

> > > down

> > > > > into the 20's and my 25D down to about 8 (which is below

> > normal).

> > > > > eventhough my levels came down, i just felt no differnence

> > health

> > > > > wise good or bad. so i stopped.

> > > > >

> > > > > i still see the DR who put me on this and he checked my

> levels

> > > > again:

> > > > >

> > > > > Vit D125: 70!!!!

> > > > > Vit D25: 13

> > > > >

> > > > > what gives??? anybody got some insight on this? i feel like

> > maybe

> > > i

> > > > > should give it another shot, but it really did nothing for

me

> > the

> > > > > first go round, and is kinda expensive for the Benicar. is

> > there

> > > > > another med to try that might be better...

> > > > >

> > > > > thanks

> > > > > bill

> > > > >

> > > > > PS - i had my NK cell activity checked too and it was sky

> > high.

> > > > >

> > > > > 500 with a normal range of approx. (8-170)

[Guest guest]

Almost every item in the body varies over time, including 1,25D. The

first question is whether the change results in an abnormal value:

Look at

http://lassesen.com/cfids/supplements/vitamin_1,25d.htm

and a 70 reading does not appear to be unusual....

Also notice the diagram below it --- 1,25D readings are not

consistant between tests and can vary by 30-40% between tests, and

the higher numbers have even more variation between tests. The same

blood sample on one test can be 190 using one test kit and 90 on

another test kit!

What I am far more concern about is the very low 25D levels....

To get it up to optimal range, you will likely need to be doing

almost 4000 iu/day of vitamin D for 6+ months....

See:

http://www.mercola.com/2002/feb/23/vitamin_d_deficiency.htm

Vitamin D should be 45-50 ng/ml or 115-128 nmol/l.

> my initial levels were:

>

> Vit D-125: 56

> Vit D-25 : 25 (about)

> ACE - normal

>

> i still see the DR who put me on this and he checked my levels

again:

>

> Vit D125: 70!!!!

> Vit D25: 13

>

> what gives???

[Guest guest]

Bill,

Vitamin 1,25D and Benicar shared one characteristics: both are anti-

inflammatories.... When you were on Benicar, that reduced

inflammation so there was not as much need for the body to produce

it's own anti-inflammatory medicine --- hence 1,25D would be expected

to drop.

The increase of 1,25D after stopping MP suggests that the underlying

cause of inflammation has increased (there is more need to produce

more 1,25D) which implies that the MP did not reduced the underlying

cause, but rather masked it and allow it to increase.

i.e. the old debate whether MP reduces the infection, or simply stops

the immune response to the infection (and thus allow the infection to

increase -- hence the herxing from the very low dosages of

antibiotics that have been often reported because there is now SO

MUCH infection).

I beleive that it increases the infection and simply hides the

symptoms by disrupting the immune response by vitamin D deficiency.

HTH,

Ken

> paul

>

> thanks for the reply.

>

> i just to want to make sure a few things are clear.

>

> i am not on Benicar and have not been on it for about nine months.

i

> was on this protocol last summer and stayed on it for almost 6

months.

>

> while i did the protocol, i really had no effect one way or the

other

> on my health.

>

> but while on the Benicar, my 1,25-D levels came down quite a bit

> (from 58 down into the 20's).

>

> i just had my levels checked and was surprised to find that my 1,25-

D

> is now 70 which is higher than it has ever been. and also quite a

bit

> out of the the labs normal range (which has high of 60).

>

> i'm not going by the protocols data for high values, i'm going by

the

> labs and by the lab my 1,25-D is quite high. also my 25-D is pretty

> low, so there is something wrong here...

>

> i am not a proponent of anything other than all of us getting well,

> and it seems like coincidence doesn't really explain how my 1,25-D

> have fluctuated.

>

> i want to get the 1,25-D level down, but i just wish i got some

> reaction from the Benicar. i didn't and that has me concerned about

> going back on it.

>

> in the nine months that i have been off Benicar my 1,25-D has

jumped

> alomost 50 points.

>

> thanks

> bill

[Guest guest]

Bill,

When you check the Lassesen website, make sure you check your units

of measurement. It looks to me that the chart puts you well beyond

the normal population and you are in the company of a small

percentage of pregnant women.

Ken

> > my initial levels were:

> >

> > Vit D-125: 56

> > Vit D-25 : 25 (about)

> > ACE - normal

> >

> > i still see the DR who put me on this and he checked my levels

> again:

> >

> > Vit D125: 70!!!!

> > Vit D25: 13

> >

> > what gives???

[Guest guest]

barb

i think my 25-D is actually in the normal range now.

the 125-D is the one that is quite a bit out of range.

but yes i eat a normal diet, but while i was on the protocol i did

avoid D and Sun. i don't do that now.

a high 1,25-D is bad, right?

thanks

bill

> > > > > > i want to say first that i tried the Benicar/ abx

treatment

> > > back

> > > > > last

> > > > > > summer (when all this talk began to flourish)for about 4

> > > months

> > > > and

> > > > > > had almost no reaction one way or another.

> > > > > >

> > > > > > i did the full treatment Benicar 40mg 4 x aday. mino eod

> and

> > > > Zithro

> > > > > > once a week. i just did not respond to this.

> > > > > >

> > > > > > my initial levels were:

> > > > > >

> > > > > > Vit D-125: 56

> > > > > > Vit D-25 : 25 (about)

> > > > > > ACE - normal

> > > > > >

> > > > > > as the treatment went along my values all came down. i

got

> > 125

> > > > down

> > > > > > into the 20's and my 25D down to about 8 (which is below

> > > normal).

> > > > > > eventhough my levels came down, i just felt no

differnence

> > > health

> > > > > > wise good or bad. so i stopped.

> > > > > >

> > > > > > i still see the DR who put me on this and he checked my

> > levels

> > > > > again:

> > > > > >

> > > > > > Vit D125: 70!!!!

> > > > > > Vit D25: 13

> > > > > >

> > > > > > what gives??? anybody got some insight on this? i feel

like

> > > maybe

> > > > i

> > > > > > should give it another shot, but it really did nothing

for

> me

> > > the

> > > > > > first go round, and is kinda expensive for the Benicar.

is

> > > there

> > > > > > another med to try that might be better...

> > > > > >

> > > > > > thanks

> > > > > > bill

> > > > > >

> > > > > > PS - i had my NK cell activity checked too and it was

sky

> > > high.

> > > > > >

> > > > > > 500 with a normal range of approx. (8-170)

[Guest guest]

yeah, i don't know how to make this conversion to the data at Ken's

site.

my reading was 70 pg/mL. at the website they use pmol/L. i don't know

how to convert pg to pmol.

anyway, it is high, and over the months since going off the Benicar

it has gone steadily up. only now has it gone above the normal range.

it appears to me that my body is converting 25-D to 1,25-D at an

abnormally fast rate and maybe that is why my 25-D is on the low side.

but wouldn't supplementing D only add fuel to the fire?

the thing i'm not clear about is: does everybody agree that a high

1,25-D level is bad?

thanks

bill

> > > my initial levels were:

> > >

> > > Vit D-125: 56

> > > Vit D-25 : 25 (about)

> > > ACE - normal

> > >

> > > i still see the DR who put me on this and he checked my levels

> > again:

> > >

> > > Vit D125: 70!!!!

> > > Vit D25: 13

> > >

> > > what gives???

[Guest guest]

Vit D25: 13 is neither normal nor optimal.

Look at http://www.mercola.com/2002/feb/23/vitamin_d_deficiency.htm

" Your vitamin D level should NEVER be below 32 ng/ml. " Dr. Mercola.

32ng/ml is 77 nmol/l. (take ng/ml * 2.4 to convert to nmol/l).

Low levels are strongly associated with IBS, MS, RA, diabetes and

many autoimmune diseases...

Who is telling you that it is normal? Remember, vitamin D is

deficient in 85-90% of the US population, so are you saying that you

are " normally deficient " ?

Anyone reading the recent medical studies on Vitamin D(there has been

a stack over the last 2 year), cannot help but to agree with Dr.

Mercola, and some would suspect that his optimal numbers may need to

be higher.

Vitamin D is a major controller of the immune system. Do you wish to

intentionally cripple your Immune System?

Prior to Antibiotics, Vitamin D was used as an " antibiotic " for many

infections -- and it appeared to have worked (one of the pioneers in

controlled medical studies did several studies with Vitamin D on

different illnesses).

> barb

>

> i think my 25-D is actually in the normal range now.

>

> the 125-D is the one that is quite a bit out of range.

>

> but yes i eat a normal diet, but while i was on the protocol i did

> avoid D and Sun. i don't do that now.

>

> a high 1,25-D is bad, right?

>

> thanks

> bill

[Guest guest]

No, a " high " 1,25D level is not bad. A level of 200+ would cause a MD

to try finding the CAUSE of it being high (typically an inherited

gene defect). It goes high as a response to infections and

inflamation.

" 25(OH)D is the better marker of overall D status. It is this marker

that is most strongly associated with overall health. " - Dr. Mercola.

1,25D is only looked at in research studies because of problems

getting accurate measurements of it, and some uncertainity of how to

intrepret the measurements. 1,25D supplementation is ineffectual

compared to 25D supplementation, and in some cases produces contrary

results.

The following quote from medline:

" He had low 25-hydroxyvitamin D (25-OHD) and high 1,25-(OH)2D serum

levels. Intramuscular vitamin D2 administration produced radiological

and biochemical evidence of recovery. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=3260278 & dopt=Abstract

Other patients are mentioned with " the baseline serum levels of 1,25-

(OH)2D were 140.7 +/- 27.4 pg/ml " , all of them recieved Vitamin D

supplementation...

There is a lovely chart of seasonal variation of Vitamin D (and the

impact on MS follows the seasonal pattern. Low Vitamin D means more

symptoms (Lesions in this case), and high levels means less symptoms.

http://www.direct-ms.org/seasonal.html I have seen similar charts

for 1,25D levels --- which goes up in Summer...

> > > > my initial levels were:

> > > >

> > > > Vit D-125: 56

> > > > Vit D-25 : 25 (about)

> > > > ACE - normal

> > > >

> > > > i still see the DR who put me on this and he checked my

levels

> > > again:

> > > >

> > > > Vit D125: 70!!!!

> > > > Vit D25: 13

> > > >

> > > > what gives???

[Guest guest]

Ken

i appreciate all the info. it is obvious that you care a great deal

about this topic.

that being said, there appears to be a line drawn in the sand here

between two Vitamin D groups. one believes that high Vit D is

essential to proper immune function, another that believes that Vit D

actually prevents the immune system from getting rid of the

infections that are causing the problem.

i have to say that as a patient with CFS it is very frustrating

becasue both sides have convincing evidence.

also, both sides are so entrenched in their theories that neither is

willing to consider that there may be some truth in both ways of

looking at this.

anyway, my 125-D levels have responded exactly that way they were

supposed to on the Benicar. they were high pre-Benicar, they came

down while on Benicar, and now that i have been off Ben, they have

continued to rise to the point that they are out of range. so i find

it hard to really atribute this to the idea that the lab is getting

inacurate numbers.

and there is one question that it seems to me that your appraoch to

this topic doesn't consider.

the research that supports high Vit D supplemetation notes that

people with various diseases like MS, IBS, etc...have low levels of

25-D. but this could be because the body is converting 25-D to 125-D

too fast, and not because they are actually deficient in Vit D. and

it seems that under those conditions where the body is converting 25-

D too fast that added more Vit D would only make the probelm worse.

i know that you think the 125-D is not an accurate test, but until

this test is accurate, how can you disregard this theory?

thanks

bill

> > barb

> >

> > i think my 25-D is actually in the normal range now.

> >

> > the 125-D is the one that is quite a bit out of range.

> >

> > but yes i eat a normal diet, but while i was on the protocol i

did

> > avoid D and Sun. i don't do that now.

> >

> > a high 1,25-D is bad, right?

> >

> > thanks

> > bill

[Guest guest]

I don't know, Bill. Perhaps your body's converting D really quickly

to 1,25d for it's anti-inflammatory effects?

Do you have many inflammation symptoms?

Bill, what I realized is that I don't think we really know for sure

what's going on with D, and it will take a lot more research, and

probably some more testing and maybe some more experimentation with

supplementation and/or avoidance to see what your needs are. We

especially need more research into the relationship of 25d and

1,25d, which a lot of the D studies haven't taken into account.

So, I don't think it's as simple as some people try to make it. I

don't know that we can even determine that there are any optimal D

numbers to shoot for right now because we don't really understand

its mechanism, and much of the studies have not included the factor

of 25d being converted to 1,25d. I do know that a very smart friend

of mine went to visit Dr. Tony Norman, the UC D expert, as well as

one of his colleagues, and they both said that you cannot use the " D

ratio " as an accurate marker for inflammation. I think even the

website that promotes D avoidance, has conceded that point, although

not from the roof tops.

I know my friend went to visit Dr. Norman, because she's a stickler

for data, and her D numbers and reactions to supplementation were in

complete opposition to the theory that was being touted at the time.

Mainly her bone loss was improving with D supplementation, despite

her high 1,25d. That's why she started talking to Dr. Norman and the

other D expert.

We know, from Barb's initial research, that 1,25D (a hormone) can

fluctuate wildly over a month's time. In menopausal women, we know

that it can change by 50% during the menstrual cycle. Who knows what

other hormonal factors might influence 1,25d levels?

My daughter and my friend both reacted well to cutting back on D and

sun and were both helped by minocycline after quitting the Benicar.

My friend was like you, took Benicar and saw no effect whatsoever

(she didn't have her D's tested). My daughter, who had an extremely

high 1,25d, also did really well on minocycline and sun avoidance,

but not on the Benicar. She's not taking anything at the moment, and

this is the healthiest she's been in 5 years. She benefitted from

staying out of the sun and avoiding D (mainly milk) way before

trying the 'protocol' but it was the minocycline that was the

turning point. At this point, I don't know whether her sun

sensistivity was a result of too much D, or perhaps something like

secondary porphyria. Recently, she's been drinking milk, and

spending time out in the sun and not having any bad effects from it.

Another first in the last five years.

So, I'm afraid there's no easy answer, and no one can say for sure

whether your 1,25d is too high, or whether it will stay high. It's

possible that you could get tested again, and your number would be

much lower. Perhaps my daughter's as well? I think you have to find

other ways to gauge whether that number's good or bad for YOU.

penny

p.s. I'm curious. How active are you? Both my friend and my

daughter, neither of whom responded well to Benicar, are very

active. My friend was an avid tennis player (who found playing at

night and staying out of the sun helped her a lot) and my daughter's

been a serious dancer forever. Both in really great physical

condition (other than illness). My other friend, who didn't feel

much from Benicar either, is also a very active, hyper person

(definitely no CFS). I, on the other hand, have become a certified

couch potato, very exercise intolerant. I'm wondering if people who

are more pysically active are reducing their Angiotensin II somehow

through their activity, rendering the Benicar unnecessary? Or

perhaps they convert 25d to 1,25d more quickly? Just a wild, off the

top of my head, guess.

" winsomme " wrote:

> > i think my 25-D is actually in the normal range now.

> >

> > the 125-D is the one that is quite a bit out of range.

> >

> > but yes i eat a normal diet, but while i was on the protocol i

did

> > avoid D and Sun. i don't do that now.

> >

> > a high 1,25-D is bad, right?

> >

> > thanks

> > bill

[Guest guest]

penny

i really agree with what you are saying. we just don't know.

for the past nine months (since trying the protocol), i'm not

avoiding Vit D, but i'm also not supplementing it.

it might be an interesting test to suppl. Vit D and see waht happens

to my values.

i'm glad that i still see this DR who gave me the Benicar because i

can track my Vit D nuumbers, but it is very frustrating to not know

which way to go as far as treatment is concerned.

anyway, i will keep pligging along like the rest of us.

thanks

bill

PS - my activity level is low. any sort of exercise or anything that

gets my heart rate up makes me feel much worse.

>

> > > i think my 25-D is actually in the normal range now.

> > >

> > > the 125-D is the one that is quite a bit out of range.

> > >

> > > but yes i eat a normal diet, but while i was on the protocol i

> did

> > > avoid D and Sun. i don't do that now.

> > >

> > > a high 1,25-D is bad, right?

> > >

> > > thanks

> > > bill

[Guest guest]

My formal training is in statistics -- which means that looking at

statistical evidence is part of my stock in trade.

I see a massive number of studies that associate vitamin D levels (or

distance from the equator when growing up) with both INCIDENCE OF

DISEASE. I also see many studies where a group given vitamin D

supplementation were compared to equivalent groups not given vitamin

D. The groups given Vitamin D had:

* 50% Lower incidence of Cancer

* 80% Lower incidence of Diabetes

etc etc etc

And the groups in some cases were 5000 patients. When I see that

degree of change for such a large study there is little ability to

rationally argue that there is no evidence.

You can go into rhetorical argument -- which can end up in such

silliness as " But this study was not done on people in Seattle,

working in the IT industry that were born between 1960 and 1965 --

thus it is invalid. "

As most of you know, I try to keep to hard evidence whenever

possible -- i.e. medline citation. For 1,25D I could not find any

**conventional** literature on the clinical use of 1,25D -- instead I

find articles where high 1,25D is associated with very low 25D (and

where it was corrected by adding 25D).

In January, I spent a lot of time trying to find any third-party peer-

review evidence that supported Trevor Marshall theories. There was

none that I could find. What I did find was authors that disagreed

strongly with his intrepretation of THEIR WORK...

" According to Trevor Marshall I provided in this paper an excellent

explanation of how the non- infectious surface antigen of Hepatitis B

(HBsAg) works to directly oppose the differentiation activity of 1,25-

dihydroxyvitamin-D. I wish to point out that in my paper I do not

demonstrate such activity "

Vanlandschoot,

Group leader

Center for Vaccinology, Ghent University, 9000 Ghent, Belgium

http://bmj.bmjjournals.com/cgi/eletters/326/7379/12/b#88124

How the critical question: who is more likely to be correct - the

person who did the original research, or Trevor Marshall who read

their paper??? I opted to pick -- and with that, the inference

was naturally extended to all of Trevor's intrepretation.... so with

no independent 3rd party evidence and with the demostration of mis-

intrepretation of articles, I found that I could not find any

rational basis for the " low-vitamin-D " theory -- lots of rhetorical

arguments... " It could be ... " but not a single " this study found

that people improved with reduced (below optimial) 25D levels "

The bottom line was simple.

Re-check the " evidence " for low 25-D, is there a single study that

directly tests the impact of low 25-D and show better results than

with supplementation of 25D? There are lots of studies comparing no-

vitamin D supplementation against vitamin D supplementation. Can you

find a single published study on intentional Vitamin D deficiency

versus supplementation?

I believe what you will find is a septic pumper tank full of theories

and not a single solid brick to build upon... IMHO

> > > barb

> > >

> > > i think my 25-D is actually in the normal range now.

> > >

> > > the 125-D is the one that is quite a bit out of range.

> > >

> > > but yes i eat a normal diet, but while i was on the protocol i

> did

> > > avoid D and Sun. i don't do that now.

> > >

> > > a high 1,25-D is bad, right?

> > >

> > > thanks

> > > bill

[Guest guest]

Ken

i think that penny is right that the research on Vit D 125-D is

lacking, and i'm not sure how you can come to all these definitive

conclusions about Vit D as it pertains to Chronic Fatigue Syndrome.

can you point me to the studies that shows that high 125-D levels can

be correted by supplementing Vit D?

" I find articles where high 1,25D is associated with very low 25D

(and where it was corrected by adding 25D). "

i just want to understand what your saying. you're saying that adding

Vit D will lower 125-D levels in PWCs?

are you also saying that people with Sarcoidosis should be adding Vit

D supplementation to their diet?

thanks

bill

> > > > barb

> > > >

> > > > i think my 25-D is actually in the normal range now.

> > > >

> > > > the 125-D is the one that is quite a bit out of range.

> > > >

> > > > but yes i eat a normal diet, but while i was on the protocol

i

> > did

> > > > avoid D and Sun. i don't do that now.

> > > >

> > > > a high 1,25-D is bad, right?

> > > >

> > > > thanks

> > > > bill

[Guest guest]

Ken

one other thing if you don't mind:

how do i convert 70pg/mL to pmol/L?

thanks

bill

> > > > > barb

> > > > >

> > > > > i think my 25-D is actually in the normal range now.

> > > > >

> > > > > the 125-D is the one that is quite a bit out of range.

> > > > >

> > > > > but yes i eat a normal diet, but while i was on the

protocol

> i

> > > did

> > > > > avoid D and Sun. i don't do that now.

> > > > >

> > > > > a high 1,25-D is bad, right?

> > > > >

> > > > > thanks

> > > > > bill

[Guest guest]

Example of one article:

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

J Pediatr Gastroenterol Nutr. 1988 May-Jun;7(3):341-6. Vitamin D

metabolism in biliary atresia: intestinal absorptions of 25-

hydroxyvitamin D3 and 1,25-dihydroxyvitamin D3. Kimura S, Seino Y,

Harada T, Nose O, Yamaoka K, Shimizu K, Tanaka H, Yabuuchi H, Fukui

Y, Kamata S, et al.

" He had low 25-hydroxyvitamin D (25-OHD) and high 1,25-(OH)2D serum

levels. Intramuscular vitamin D2 administration produced radiological

and biochemical evidence of recovery. "

Which I read as D2 supplementation results in higher 25D and lower

125D (i.e. recovery).

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

For CFIDS

=========

Hock, AD. Fatigue and 25-hydroxyvitamin D levels. Journal of Chronic

Fatigue Syndrome, 1997, 3, 3, 117-127.

From

FIRST WORLD CONGRESS ON CHRONIC FATIGUE SYNDROME AND RELATED

DISORDERS Brussels, November 9-11, 1995

http://www.ncf-net.org/conference/firstwoldabstracts.htm

" TIREDNESS, CHRONIC FATIGUE AND CHRONIC FATIGUE SYNDROME AS CONTINUUM

OF VITAMIN D-DEFICIENCY OR RELATED DISORDERS OF CALCIUM METABOLISM --

A.D. HOCK

Office of Internal Medicine and Psychotherapy, Koln, Germany

The method of this research study consisted of observing the

psychosomatic signs of tired people of different severity and

correlating them to different levels of vitamin D in Serum. It was by

chance to detect that vitamin D-deficiency was the main cause of

fatigue besides deficiency of iron or magnesium or more rarely

derangements of thyroid function. Some tired patients showed

hypoparathyroidism, mostly with normocalcemia instead of vitamin D

deficiency. Severeness of fatigue correlated directly to the degree

of psychosomatic disturbance and indirectly to vitamin D levels.

Substitution of Vitamin D reversed fatigue and psychosomatic disease

in modestly ill patients very quickly, in severe cases it was not

possible to reverse complaints fully

The effect of vitamin D could be optimated by adding some magnesium

and phosphate. Chronic fatigue patients seemed to respond partially,

especially pains in muscle, joints and bones disappeared, but cyclic

fatigue and high chemosensitivity persisted the 9 months of

observation. The given doses of vitamin D ranged from 2.000 I.U. to

10.000 I.U. In cases of typical clinical signs, but without low

vitamin D levels, remissions could be reached as well, proofing the

suspicion of hidden vitamin D-deficiency or ineffective PTH. The high

correlation of deficiency of vitamin D with iron deficiency was

striking and gives idea of disturbed mineral and metal resorption. "

Also:

" A.D. Hock on 'Divalent Cations, Their Hormones, Psyche and Soma. 4

Case Reports.' This drew attention to the complex role of Vitamin D

and PTH and paradoxical data found in neuropsychiatric cases.

Abnormalities in Vitamin D and/or PTH are highly correlated with low

ferritin levels. " http://osiris.sunderland.ac.uk/autism/hooperpg1.htm

So a low FERRITIN (a special iron test) level may be connected to

Vitamin D abnormalities... I BELIEVE THERE IS ONE SUBGROUP of

CFIDSers that have low FERRITIN levels... "

" 4 case reports by A. D. Hock (Germany) brought up the possibility

that Vitamin D and parathormone disturbance should not be overlooked

as a possible cause of chronic fatigue. The symptoms are very similar

and this is a treatable disorder. " http://www.fatigatio.de/126/

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

The same type of response was seen with Sarcoidosis applies to

" Scadding administered Calciferol (Vitamin D2) to 9 of his 15

[sarcoidosis] patients. Calciferol supplementation had worked quite

well for Lupus Vulgaris patients, and the expectation was that it

would also speed remission from Sarcoidosis...Of the 9 patients with

which he attempted supplementation, 3 were able to tolerate large

doses of Calciferol, 3 were able to tolerate lower doses, and 3 were

not able to tolerate any Calciferol at all.

The prognoses of the 6 patients able to tolerate Calciferol were

good, 3 radiographs cleared, three improved. But the prognosis for

the third group, those intolerant to Calciferol, was grim. Two were

unchanged and one worsened. " - quote from Trevor Marshall

at http://clinmed.netprints.org/cgi/content/full/2002080004v1

In short: 33% went into REMISSION, 33% improve and 33% may have

herxed badly from vitamin D (which is reported on the FWIW protocol

by some people only being able to tolerate 50 IU/day increase of

Vitamin D per week). I could never figure out Trevor's conclusion

here: Vitamin D supplmentation had 11% getting worst, 66% getting

better and 22% being unchanged -- and the 11% and 22% did NOT

actually do the treatment " 3 were not able to tolerate any Calciferol

at all " . How this can be used as evidence to avoid Vitamin D

dumbfounded me --- Can you explain? It seemed like clear evidence FOR

VITAMIN D for Sarcoidosis patients!!! after all 33% was cured and

everyone who could ACTUALLY take Vitamin D IMPROVED...

> Ken

>

> i think that penny is right that the research on Vit D 125-D is

> lacking, and i'm not sure how you can come to all these definitive

> conclusions about Vit D as it pertains to Chronic Fatigue Syndrome.

>

> can you point me to the studies that shows that high 125-D levels

can

> be correted by supplementing Vit D?

>

> " I find articles where high 1,25D is associated with very low 25D

> (and where it was corrected by adding 25D). "

>

> i just want to understand what your saying. you're saying that

adding

> Vit D will lower 125-D levels in PWCs?

>

> are you also saying that people with Sarcoidosis should be adding

Vit

> D supplementation to their diet?

>

> thanks

> bill

[Guest guest]

From http://www.globalrph.com/conv_si.htm

Multiply by 2.6 for 1,25D

70pg/mL --> 182 pmol/L

> Ken

>

> one other thing if you don't mind:

>

> how do i convert 70pg/mL to pmol/L?

>

> thanks

> bill

[Guest guest]

> Vit D-125: 56

> Vit D-25 : 25 (about)

>

> Vit D125: 70!!!!

> Vit D25: 13

>

> what gives??? anybody got some insight on this?

Vitamin D levels can vary for a number of reasons, the obvious one

being seasonal effects. The dietary level of calcium is the other

obvious factor. I.e., if you lower your calcium intake, your body

adjusts by producing more D125, in order to increase calcium

absorption (by the way, are your PTH levels normal?). According to

theory, D25 is stored in fatty tissues. So if you spent six months

of avoiding sources of D25, then you probably would have very little

left stored in your tissues, and perhaps you simply might be

deficient in vitamin D by now, as Ken has adjusted.

Before doing anything, I would repeat that test to make sure that

those results are correct. The other fun possibility is to try to

determine if the elevated levels of D125 are due to normal renal

synthesis D125, or due to nonrenal (i.e. immune) synthesis. One way

of doing this is to increase your calcium supplementation, which

should in theory lower renal synthesis. Or the other thing to do,

is to challenge yourself with vitamin D supplementation, as nonreal

synthesis is not very regulated compared to renal synthesis, so the

more D25 there is, the more D125 will be produced. For example, see

this study on rheumatoid arthritis, where nonrenal synthesis of D125

was proven in this manner:

Evidence for nonrenal synthesis of 1,25-dihydroxyvitamin D in

patients with inflammatory arthritis.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgicmd=Retrieve & db=pubmed & d

opt=Abstract & list_uids=1950677 & query_hl=1

However, even though nonreal synthesis occurs in rheumatoid

arthritis, many studies have shown the benefit of vitamin D

supplementation on rheumatoid arthritis, such as the following one:

Disease modifying and immunomodulatory effects of high dose 1 alpha

(OH) D3 in rheumatoid arthritis patients.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgicmd=Retrieve & db=pubmed & d

opt=Abstract & list_uids=10464556 & query_hl=1

> PS - i had my NK cell activity checked too and it was sky high.

> 500 with a normal range of approx. (8-170)

While I'm not an expert on NK activity, I know that several studies

on CFS have actually showed it to be reduced. NK activity is

sometimes elevated due to a viral infection. However, there is some

evidence that vitamin D can also increase NK activity. Decreased NK

activity reduces antiviral immune functioning, so I wonder if

increased levels are better than decreased levels. However, if you

have not shown any prior evidence of viral infections, then perhaps

it might be worth to investigate why you have such increased

levels. Since levels can vary with respect to the stage of viral

infections, again I might suggest that you get retested at some

later date to see if the elevated levels are keeping constant.

Mark

[Guest guest]

mark

it is interesting that you mention NK cell activity in relation to

Vit D.

i just had this test done a couple of weeks ago and my results were

very surprising.

NK cell acitivity: 500 ref range: (8-170)LU30

thanks

bill

> > Vit D-125: 56

> > Vit D-25 : 25 (about)

> >

> > Vit D125: 70!!!!

> > Vit D25: 13

> >

> > what gives??? anybody got some insight on this?

>

> Vitamin D levels can vary for a number of reasons, the obvious one

> being seasonal effects. The dietary level of calcium is the other

> obvious factor. I.e., if you lower your calcium intake, your body

> adjusts by producing more D125, in order to increase calcium

> absorption (by the way, are your PTH levels normal?). According to

> theory, D25 is stored in fatty tissues. So if you spent six months

> of avoiding sources of D25, then you probably would have very

little

> left stored in your tissues, and perhaps you simply might be

> deficient in vitamin D by now, as Ken has adjusted.

>

> Before doing anything, I would repeat that test to make sure that

> those results are correct. The other fun possibility is to try to

> determine if the elevated levels of D125 are due to normal renal

> synthesis D125, or due to nonrenal (i.e. immune) synthesis. One

way

> of doing this is to increase your calcium supplementation, which

> should in theory lower renal synthesis. Or the other thing to do,

> is to challenge yourself with vitamin D supplementation, as nonreal

> synthesis is not very regulated compared to renal synthesis, so the

> more D25 there is, the more D125 will be produced. For example,

see

> this study on rheumatoid arthritis, where nonrenal synthesis of

D125

> was proven in this manner:

>

> Evidence for nonrenal synthesis of 1,25-dihydroxyvitamin D in

> patients with inflammatory arthritis.

>

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgicmd=Retrieve & db=pubmed & d

> opt=Abstract & list_uids=1950677 & query_hl=1

>

> However, even though nonreal synthesis occurs in rheumatoid

> arthritis, many studies have shown the benefit of vitamin D

> supplementation on rheumatoid arthritis, such as the following one:

>

> Disease modifying and immunomodulatory effects of high dose 1 alpha

> (OH) D3 in rheumatoid arthritis patients.

>

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgicmd=Retrieve & db=pubmed & d

> opt=Abstract & list_uids=10464556 & query_hl=1

>

> > PS - i had my NK cell activity checked too and it was sky high.

> > 500 with a normal range of approx. (8-170)

>

> While I'm not an expert on NK activity, I know that several studies

> on CFS have actually showed it to be reduced. NK activity is

> sometimes elevated due to a viral infection. However, there is

some

> evidence that vitamin D can also increase NK activity. Decreased

NK

> activity reduces antiviral immune functioning, so I wonder if

> increased levels are better than decreased levels. However, if you

> have not shown any prior evidence of viral infections, then perhaps

> it might be worth to investigate why you have such increased

> levels. Since levels can vary with respect to the stage of viral

> infections, again I might suggest that you get retested at some

> later date to see if the elevated levels are keeping constant.

>

> Mark

[Guest guest]

ken

is that study based on a single pediatric patient with biliary

atresia? i couldn't tell from the report.

anyway, i think what i am going to do is stick with my original plan

which was to do GSH precursors and NT factor see if my 125-D levels

change at my next appt in two months.

i think an interesting question is where my increased 125-D level is

coming from.

in Sarc patients it seems it comes directly from the granuloma. if

PWCs have high 125-D levels, i wonder what the source of it is?

thanks for all your help,

bill

> > Ken

> >

> > i think that penny is right that the research on Vit D 125-D is

> > lacking, and i'm not sure how you can come to all these

definitive

> > conclusions about Vit D as it pertains to Chronic Fatigue

Syndrome.

> >

> > can you point me to the studies that shows that high 125-D levels

> can

> > be correted by supplementing Vit D?

> >

> > " I find articles where high 1,25D is associated with very low 25D

> > (and where it was corrected by adding 25D). "

> >

> > i just want to understand what your saying. you're saying that

> adding

> > Vit D will lower 125-D levels in PWCs?

> >

> > are you also saying that people with Sarcoidosis should be adding

> Vit

> > D supplementation to their diet?

> >

> > thanks

> > bill

[Guest guest]

Dear Ken, Dear All,

Thank you for this article, I am not able to get into all its

details now ... I am trying to save it such way to be able to find

it later ... My thanks to you however for studying things so

properly and posting them here ...

After all the reading I have done this subject this far I retain one

thing ... Vitamin D via sun OR intake is crucial ...

Further more, many doctors are stupid ... they say to me " you say

your Vitamin D3 is low, but your 1,25 Hormone is OK, the Hormone is

important, so YOU HAVE NO PROBLEM ...

I have told them is all different what appears in blood, what is in

the tissues ... etc ... but this seems to complicated for them ...

they say " you are really getting into details now ... ! " Yes, In

details I go, where else ... ? If things would be that simple there

would be no problems in this World ... Simple mind ness (my

spellchecker does not recognize this word ...) is what causes most

on this problems in the first place ... !

I am under the impression your article mentions exactly that

situation like mine are possible ... (and I have read this in a

particular article which must be saved here somewhere ... )

I am so upset on doctors ... because they managed to get into this

positions but do THINK and do not work at all that hard anymore to

know what they are doing ... are very ARROGANT in stead ... This is

why my appreciation to you and your quality work ... !

Regards, ... !

> > > > barb

> > > >

> > > > i think my 25-D is actually in the normal range now.

> > > >

> > > > the 125-D is the one that is quite a bit out of range.

> > > >

> > > > but yes i eat a normal diet, but while i was on the protocol

i

> > did

> > > > avoid D and Sun. i don't do that now.

> > > >

> > > > a high 1,25-D is bad, right?

> > > >

> > > > thanks

> > > > bill