XMRV, NF-KB, and cortisol (Re: The spin by other doctors continue).

[Guest guest]

Hi all,

I just joined this list.

One question that might illuminate is whether there is an evolutionary

role here. Is it at all possible that the body is keeping cortisol

low to fight XMRV? Of course, even if it has that purpose, it might

still be OK to take hydrocortisone. Seems an important thing to

study.

The possible danger of cortisol interests me greatly as I just started

hydrocortisone, and I do not want to take the risk of increasing XMRV.

Cortisol 10-25mg/d does subjectively help with RSI and fibro pain and

inflammation, and I don't want to stop.

[Guest guest]

I am so confused by this. I was diagnosed with 's 2 years ago

and my endo prescribed 30 mg. Cortef. My heart rate went through the

roof, I had screeching constant tinnitus and I was more 'fatigued' than

ever. Endocrinologist warned me about having an adrenal crisis - used a

lot of scare tactics, insisting that my 3 hour adrenal test showed

severe adrenal depletion. That it was imperative for me to take 30 mg.

Hydrocortisone to avoid going into crisis.

I was diagnosed with CFS at least 15 years before adrenal insufficiency

was discovered. I've been hypothyroid for more than ten years and I've

have been trying to balance steroid replacement and thyroid medication

with a lot of difficulty.

I've had problems tolerating any hormones since CFS especially

synthetics. I am now on 20 mg. Cortef and on 90 grams of Erfa

desiccated Thyroid (equal to one and a half grains of Armour). Most

doctors hate desiccated thyroid; it's an ongoing battle since it's the

only thyroid medication I tolerate.

Along comes XMRV and my head is spinning. My doctors/specialists have

always been abysmally ignorant and I no longer have the energy to look

for more knowledgeable doctors. I did consult three different

endocrinologists since my 's diagnosis but they wanted nothing to

do with me and insisted that I stay with my current endo. Does a

replacement dose of Hydrocortisone for depleted adrenals increase/worsen

XMRV? I have limited time to spend on the computer because of

exhaustion and tinnitus.

Since I started Hydrocortisone, I require a lot of quiet isolation - I

am very easily over stimulated and very sensitive to stress. I rarely

speak on the phone because it worsens the tinnitus and increases my

exhaustion. For the first time ever, I have 'exploded' in doctors'

offices (not that they didn't deserve it) but these emotional outbursts

are uncharacteristic.

Anybody know anything about the relationship between cortisol and XMRV?

Dr. Mikovitz sp? made a passing comment, but did not go into detail.

Very grateful for help from those who can think through these issues,

Re: XMRV, NF-KB, and cortisol (Re: The spin

by other doctors continue).

Hi all,

I just joined this list.

One question that might illuminate is whether there is an evolutionary

role here. Is it at all possible that the body is keeping cortisol

low to fight XMRV? Of course, even if it has that purpose, it might

still be OK to take hydrocortisone. Seems an important thing to

study.

The possible danger of cortisol interests me greatly as I just started

hydrocortisone, and I do not want to take the risk of increasing XMRV.

Cortisol 10-25mg/d does subjectively help with RSI and fibro pain and

inflammation, and I don't want to stop.

[Guest guest]

On 2009-11-05, truecrimeluver <truecrimeluver@...> wrote:

> Dr. told at least one of his patients that XMRV does indeed have a

> cortisol receptor explaining the waxing and waning of the disease with

Silly question, but what does that mean? The receptor is on infected

cells? On other cells? I presume infected cells, from brief surfing.

> various stressors. I know some patients who wish they had never touched a

> steroid because they crashed years ago and cannot get to where they were.

Did the steroids make them better temporarily?

[Guest guest]

Thank you. This is the first explaination I've seen of this question. I did

have to search on " glucocorticoid response element " to find the right

section in all that dense scientific info.

Beverly

> The receptor is a part of XMRV itself. This was described in the paper

> that announced the discovery of this virus in 2006, published in PLoS

> pathogens. The receptor is referred to in this paper as a " glucocorticoid

> response element "

>

> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1434790/?tool=pmcentrez

>

> " These elements have been shown to activate LTR-directed transcription and

> viral replication in vitro in response to various steroids including

> androgens "

>

> This means more virus gets made in the presence of certain hormones.

> Cortisol is a glucocorticoid.

>

> Nicola

>

>

>> > Dr. told at least one of his patients that XMRV does indeed

>> > have a

>> > cortisol receptor explaining the waxing and waning of the disease

[Guest guest]

On 2009-11-06, pppbears <nicolajh@...> wrote:

> The receptor is a part of XMRV itself. This was described in the paper that

Thanks for clearing that up, pppbears. It seemed strange to me that a

virus would have a receptor.

What is the evolutionary reason for replicating when there are

" various steroids " (all steroid hormones? only androgens and

cortisol?)?

Maybe if we find out why the retrovirus has a gre, it will lead to

clues. If some HHV# have a similar receptor, then perhaps the answer

is known?

[Guest guest]

Hi Marti and all

 

<snip>

Hi Mark,

I think we are missing the point that the cortisol levels fluctuate from the

beginning of the illness through the duration.

I think that it would be safe to say that for a majority of the population -

high cortisol levels are common at the beginning of the illness as the body

fights the trigger, whatever that may be.

<end>

 

I thought when we discussed this earlier it was agreed that there was no hard

evidence to back this theory up?

 

My cortisol has always been low on testing plus a family members was tested from

early on and found to be low. This may just be my family.

 

It may be different for acute onset people and slow onset. We simply do not know

because no one is testing pre/post early illness.

 

The testing that is being done is from people who are already diagnosed with CFS

and that is finding low cortisol. The one exception to this is the work of Simon

Wessley who found high cortisol.

 

Until we have some hard data on post/  initial cortisol levels all of this is

speculation.

 

Kindest regards,

Annette

 

[Guest guest]

I think it's important to know who the authors are and what definition

they used, for each paper.

--

Q: How many CDC " scientists " does it take to change a lightbulb?

A: You only think it's dark. [CDC has denied ME/CFS for 25 years]

=================================================================

Retrovirus: http://www.wpinstitute.org/xmrv/xmrv_qa.html

[Guest guest]

Thanks Mark!

This one mentions Georgia, so would I be right in thinking that this is the

" Reeves Disease " (aka the Empirical definition)?

<snip>

Low morning cortisol salivary has been found in women with CFS in one study.

Another study infers that this could be due to childhood abuse:

http://www.ncbi. nlm.nih.gov/ pubmed/19124690

<end>

Kindest regards,

Annette

[Moderator: Reeves Disease is a rhetorical disease that was suggested at the

recent hearings... The purpose was to emphasis the problem of CFS defintiions...

the dialog went like this...

" Reeves Disease " a group of people with idiopathic chronic fatigue, other

diseases and some, not all, majorly depressed people. These people need study,

but they don't have CFS

There was considerable laughter after this, because Reeves was a department head

- Dr Joan Grobstein made this tongue in cheek remark ]

[Guest guest]

" Deficient types getting up to an alarm, not feeling slept out,

craving more sleep, and dragging themselves thru days of work

they hate year after year (burnout with no recourse)

is another common cause of low cortisol. "

Thanks for this info Carol.I have always wondered if i had low adrenals since

childhood.Your point tells me that i was. I always had some insomnia problems

but when i slept once i would not want to wake up.My parents were waking me up

almost all my adult life as i would not hear the clock ringing . I was also

allergic child.So,probably i was born with weak adrenals. Later demands of the

life were probably too much for my weak adrenals or my nervous system was weak

and i than screwed up my HPA axis totally.

best wishes

cindi

[Guest guest]

>

> Dr. told at least one of his patients that XMRV does indeed have a

cortisol receptor explaining the waxing and waning of the disease with various

stressors. I know some patients who wish they had never touched a steroid

because they crashed years ago and cannot get to where they were.

>

Hi

I have to say this hasn't been my experience. I have been on 5mg Prednisolone

for 7 years now plus Fludro and thyroid meds. Have had the best year so far

since crashing in 2000 though my original illness started in 1979 following 2

weeks of flu.

This year I was able to take up extra voluntary work, still needed to pace and

in fact I have ended up getting it badly wrong because I failed to stress dose

when I had been non stop busy for 6 months so that 2 weeks ago had an adrenal

crash from which I am not recovered. All the ME/CFS symptoms are back except

for the sore throats but I am confident I will get back to where I was but it is

going to take a month or two.

I might be an exception cos I don't seem to have any adrenal function left but

treatment with steroids gave me back my life all be it in a restricted form but

at least an enjoyable life where I could enjoy a daily walk with my dog and feel

well and feel well the rest of the day too.

Hope to get the test when it comes to the UK and should add that I am now 61 and

was only 31 when I got sick.

Pam