Significance of XMRV Cortisol Receptors

[cfs since 1998]

There is a test that can be done called an ACTH stimulation (challenge) test. ACTH is the hormone that stimulates your adrenal glands to produce cortisol. They inject you with ACTH and then measure the amount of cortisol you produce in response. Without such a test, it's next to impossible to say whether a low cortisol level is due to adrenal fatigue (which mainstream medicine does not seem to believe anyway), or a deliberate reduction by the body. I do recall reading a study of cortisol in CFS in which some of the subjects had low cortisol and were given an ACTH stimulation test. Some (not all) of them had a blunted response to this test. They then did MRIs on them and found that their adrenal glands were only 2/3 the normal size. I haven't seen much more research on that, so the reason for that is speculative.

Naturopathic physicians often test cortisol and DHEA which is only part of the picture because they do not do ACTH stimulation tests. The whole HPA axis thing is massively confusing and I gave up on trying to fix mine (I had low cortisol and low DHEA, I still have low DHEA but now my cortisol level seems to be random) because I always thought the viral infections were the root cause anyway.

 

[Sing]

XMRV and Cortisol

Dear Wayne and Others,

I've taken Cortef 5 mg twice a day for 11 years because I show the signs of low adrenal function and tested about 1/3 below the mean for circulatiing cortisol when I take the ASDI saliva test, a test both my Family Physician and Naturopath considered more sensitive and accurate than the type of tests Endocrinologists use like the blood test, done just in early morning, or the ACTH (if my memory serves me right for those letters) test in which one is given a big dose of this stimulating factor, normally produced by the pituitary, to see how the adrenals react. With the ACTH stimulating test, if they produce a normal cortisol level, one's adrenal glands are considered okay. Problem is that this test fails to show whether or not one's pituitary is actually stimulating the adrenals enough and in a timely fashion. So the usual testing is geared to showing whether or not one has disease/failure in the adrenals, not whether the adrenals are actually getting the message to produce cortisol when needed. Because if they don't get the message, they might as well be in failure. Please read Safe Uses of Cortisol by Dr. William Mackenzie Jeffries for further details, if this is important to you.

The business about cortisol being immune suppressive is only true in high doses, too high doses for regular use. However, when one's actual cortisol level is low, as mine is, the supplemental Cortef improves immune function. It pulls me right out of a sore throat and beginning flu type symptoms when I am over tired. It has helped me more than any other medication, bar none. My version of ME/CFS entails low everything: low endocrine function of all kinds, low energy, low temperature, low blood pressure often, etc. Also a slow brain, cognitive and memory problems, sleep problems, etc. Low and slow. Aching, pain, chemical sensitivities...I mention all this just to let you know where I am coming from physically.

Cortisol is a central, master hormone that can be used to make other hormones and that is necessary for many types of bodily functions. Normally, too little of it will produce serious problems just as too much will. This is like any of the hormones: think of thyroid hormones or insulin--how necessary they are in the right amounts and times for the body's management system.
However, with XMRV, cancer or other kind of illnessess, are lower levels of cortisol or other hormones of value? Now I am thinking of the analogy with fasting--how it can help the body heal itself in some cases--so could a low level possibly be safer and more helpful overall?

What is the connection between cortisol and XMRV? Is an XMRV infection worse with low cortisol or high? Is it better with a normal cortisol level or a low level? I sure as heck want to know too!

Cecelia

 

[Wayne]

XMRV Cortisol Receptors - Great Replies

Hi Everybody,

Thanks much for all your responses.

Rich & Dreambirdie, I talked with a doctor once who had spent a number of years working in emergency rooms in hospitals. He mentioned to me that when someone came in with any kind of toxic poisoning, their first response was always to give them very large doses of NAC. It apparently would immediately dramatically raise glutathione levels and begin to detoxify the poisoning they were dealing with. I wonder how well this worked for people that had various degrees of methylation block.

CFS Since 1998: RE: """There is a test that can be done called an ACTH stimulation (challenge) test."""

***I was wondering if this test is the same as either the Cortrosyn Stimulation Test or the Adrenal Stress Index Test?

Cecelia, thanks much for your post. I've posted a quite a bit on my successful low-dose hydrocortisone supplementation experience (based primarily on Jeffries' protocols) over on the ProHealth Board. You can click on this link which will take you to the entire thread. It's fairly long and has a lot of good contributions from a number of people.

An interesting point that came out in this thread is that there was at least one person who did not do well on Cortef (biologically identical to cortisol) but did very well on a synthetic product prednisolone. The way she described it: """I tried h/c first but it has never really suited me, its far too short acting so I get highs and definite lows. This never happens with the Prednisolone.

Which makes me wonder, and I think this may be an important point... Could people who have low or irregular cortisol levels and are infected with XMRV perhaps do better supplementing with non-biologically identical hormones such as Prednisolone? Could this provide necessary adrenal/cortisol support without having to be concerned with biological-identical cortisol which can be taken up by XMRV or other viruses? (BTW, Prednisolone is about 4 times more powerful than regular cortisol).

Since I've done so well using Cortef for over 10 years now, I've kind of realized since I first posted this thread that I should probably wait to get tested for XMRV before making any new or dramatic changes to my low-dose hydrocortisone (Cortef) supplementation protocol.

Protocols I'm considering at this time (before XMRV testing) seem to be focusing on various kinds of immune system support (such as LDN). This news about XMRV reminds me of a rather obscure book I read back in the 90's about how researchers in Japan had achieved some pretty remarkable results treating ME/CFS patients by administering a wide variety of immune-enhancing mushrooms. I wish now I would have pursued this avenue back then to see what I might have been able to achieve.

Thanks again everybody for all your comments. I really appreciate them.

Wayne

 

[Wayne]

Low- Dose Hydrocortison - Improves Immune Function

The business about cortisol being immune suppressive is only true in high doses, too high doses for regular use. However, when one's actual cortisol level is low, as mine is, the supplemental Cortef improves immune function.

Cecelia, very good points about cortisol and immune function. I too discovered my immune system improved after I started low-dose supplemention.

What is the connection between cortisol and XMRV? Is an XMRV infection worse with low cortisol or high? Is it better with a normal cortisol level or a low level? I sure as heck want to know too!

I guess these were the very questions I had in mind when I posted this thread. Questions that I'm guessing are probably not answerable at this time. Thanks for articulating this for me.

Kind Regards, Wayne

 

[Sing]

Reply to Wayne

Thanks so much, Wayne, for your clear articulation of what seems known and unknown about cortisol levels, supplementation, and effects. I hope there is more research on this topic.

And as another appreciative user of low-dose cortisol/hydrocortisone/Cortef, I am also thankful for the confirmation in your experience of its effects. I have felt like "a voice crying in the wilderness" given the conventional prejudices against cortisol supplementation, due to the problems years ago when patients were given sky high doses of it for their rheumatism, etc.

These hormones need to be in the right, physiological doses, to help the body balance itself, not too high OR too low. Except, of course, for short term use as in severe asthma attacks, trauma, etc. Doctors do prescribe it in these instances, and it is considered almost a miracle drug for the way cortisol, or prednisone--the slightly artificial, pharmaceutical form of cortisol which is 4X stronger than cortisol--pulls patients back from the brink of death.

Thank you for the link to the Pro Health entries on this subject. I will read them--

All the best!

Cecelia

 

[aquariusgirl]

Cortef or hydrocortisone?

Wayne, you said you were taking Cortef. I was wondering if Cecelia is too?

I seem to have a hard time tolerating even small doses of hydrocortisone.. which I assume is the generic version of Cortef.

I wonder if it makes a difference which type you use? Any thoughts?

 

[heapsreal]

hi

I have done am and pm saliva cortisol test and everything was normal. But saying that, cortisol also has anti-inflammatory properties which could be helpful to counteract inflammation from viral infections like cytokines, RNase etc and eventually the adrenal glands that make the cortisol burn out causing lowered cortisol secretions and increased symptoms as now have increased inflammation. Just one of my hypothosis.

 

[Sing]

Reply to Aquariusgirl

Wayne, you said you were taking Cortef. I was wondering if Cecelia is too?

I seem to have a hard time tolerating even small doses of hydrocortisone.. which I assume is the generic version of Cortef.

I wonder if it makes a difference which type you use? Any thoughts?

Dear Aquariusgirl,

The brand name, Cortef, and the generic version of hydrocortisone, do have different effects in my experience. For me the generic is pretty useless, weak, time released and erratic in its effects--in other words, I don't feel it when I need it but maybe hours later feel a little unneeded stimulation. I learned, from a doctor, that generic drugs are held to a lower standard of purity than the brand names. (And how often are they ever tested?)

I don't know what your response is to the generic and so forth but if you try the different types of cortisol or different dosages, and this doesn't help or work for you, you shouldn't be taking it. Cortisol is not something you need to tough out, like chemotherapy; it is supposed to help bring balance and normal functioning and if it doesn't do that for you, I wouldn't take it.

Best regards,

Cecelia

 

[Dreambirdie]

HC sucks big time!

Just for the record, I had the WORST EXPERIENCE of my LIFE with the HC I took Feb-March of 2009. I now consider it the most hideous substance on earth. It SERIOUSLY OVER-STIMULATED my adrenals, and then CRASHED THEM down to hell. I had one of the biggest setbacks ever, and spent 3 months in bed (end of March-to end June), with the WORST, and I mean the most CRAZY HORRIBLE WORST anxiety of my life, with palpitations and arrhythmia, with severe insomnia. Yuk! I will never take that crap again.

Sorry for the drama, but I can't possibly overstate it enough. There are no words that can adequately describe the absolute 1000% horribleness HC caused me.

 

[cold_taste_of_tears]

1)Looking at research in the past, people with ME have a poor cortisol response to ACTH in the short synacthen test. The word used is 'blunted'.
E.g the cortisol curve does not rise high enough after the drug given.

I've had that test myself, twice. Always with the same result. Doctors scractch their heads, and don't know why because.......If there was little to no response then one would have Addison's disease, but in ME, this isn't as bad. So you get sent home and nothing is done. So the cortisol (stress hormone) response to stress - fired by the adrenal glands is poor, but not poor 'enough' to get put on cortisone.

Now this interests me as Psychiatrists have claimed for years cortisone makes people better, yet others have said it's dangerous and causes severe reactions and relapses.
It doesn't take long to work out that we aren't dealing with the same organic cause - if you get two different reactions, consistently.

ME patients can also have very high (not low) morning cortisol - most probably caused by a borderline low blood sugar state in one's sleep. (Cortisol would help boost blood glucose as an emergency reservoir) - however it's bad for your body long term and can cause (ironically) more exhaustion in someone with ME. (Chromium is a good supplement to take, to try and improve blood sugar control).

I think it's interesting people who are more mildly affected at first, who then fall into the severe catergory - often report being sports mad people who love exciting (high adrenal) sports.

Why is that important? Because adrenal requires cortisol. And during high intensity sports, one would be bathing one's self in cortisol - ironically making the disease much worse. This happened to me, and I know a few other girls in the past who were 'active' and became severely worse and never recovered.

Conversely, the people mildly affected tend to be less active (when healthy) who like to knit and collect model Owls - rather than go mountain biking off a cliff face. Yes I'm being silly, but you know what I mean!

If XMRV and cortisol are bad news, then it makes sense why the people with ME who push their bodys to the max (whilst ill), then get ME far worse (often permanently) than chilled out people who plod along and give up long before the people who become severe. Tragically, it's the medical profession who also encourage exhausted patients to push on, and increase activity and ignore symptoms.

This will only blow our adrenal system more, and push the cortisol up - XMRV would love this.

Relapse then with adrenaline environment (extreme sports) or 'stress' is
nothing to do with psychological and inabilty to cope in ME and everything to do with infection/endocrinology/immune system caused by the defect we have.

Hence my writing here comes full circle.

If you're ever interested, ask your doctor for a 'Short Synacthen Test' in Hospital if you're well enough. It certainly ends the 'mentally ill' accusation if your body has a poor response to ACTH.

 

[dsdmom]

I'm going to add something in here because I don't think any of us have a real answer to this yet. I am on a higher than physiological dose of prednisone - have been for over a year - and it certainly has not made my symptoms any worse. It hasn't made them better, but if we followed the rationale of more cortisol = worse symptoms, etc I would say that's not necessarily true. I am having a hell of a time trying to get off the stuff though. And for that reason alone wish I never went on it.

 

[Sing]

Reply to Dreambirdie

Just for the record, I had the WORST EXPERIENCE of my LIFE with the HC I took Feb-March of 2009. I now consider it the most hideous substance on earth. It SERIOUSLY OVER-STIMULATED my adrenals, and then CRASHED THEM down to hell. I had one of the biggest setbacks ever, and spent 3 months in bed (end of March-to end June), with the WORST, and I mean the most CRAZY HORRIBLE WORST anxiety of my life, with palpitations and arrhythmia, with severe insomnia. Yuk! I will never take that crap again.

Sorry for the drama, but I can't possibly overstate it enough. There are no words that can adequately describe the absolute 1000% horribleness HC caused me.

Hi Dreambirdie,

I am so sorry you had such a big setback in your health! What you didn't say, however, was whether you either tested or showed the signs of hypocortisolism to begin with, and then how much hydrocortisone and what form of it you were taking. Obviously it seems to have been very much the wrong medication and dosage for you, but I wouldn't want your post to scare off people who might benefit from it when readers weren't given details they would need to know to evaluate what you have said.

Cecelia

 

[Dreambirdie]

Hi Cecelia--

Sorry I was so reactive, but it was truly hell for me to be on that HC.

I had just a bit low cortisol readings in the am, a little low at midnight, but not too bad the rest of the day. I started with 2.5 mg HC, (compounded for me), and raised it gradually over a 6 week period to 25 mg. It didn't feel very good from the beginning, I got hypoglycemia and foot cramps even on low doses. At 25 mg. I got very wired and overstimulated. It was too much! So I started to back down slowly, but I was so anxious and wired, and had such scary cardiac arrhythmia that I finally just jumped off--from 15 mg to 0 mg. EVEN AFTER stopping, my body continued to react to it for 2 months! Then I crashed, and now, almost 9 months after the debacle began, I am still not back to where I was BEFORE I took it. Not good stuff for me.

 

[Wayne]

Cortef - Other Types of Hydrocortisone

I seem to have a hard time tolerating even small doses of hydrocortisone.. which I assume is the generic version of Cortef.

I wonder if it makes a difference which type you use? Any thoughts?

Hi Aquariusgirl,

Ive experimented with two other brands of hydrocortisone. I believe one was a compounding pharmacy product and another a brand name I cant remember. Neither of them were good for me at all (gave me a very disconcerting feeling). Only the Cortef works for me.

So, I definitely feel it can make a big difference what type a person uses. However, it seems to me that some people may not be able to tolerate any form or brand of hydrocortisone, no matter how low their body cortisol levels may be.

Could this be because of the ability of certain viruses like XMRV to uptake the cortisol and create and/or exacerbate all kinds of problems? Seems like a plausible hypothesis. Which takes me back to an earlier point, "could a non-biologically identical synthetic cortisol-like compound (such as prednisone) be successfully used by a person with low adrenal/cortisol problems, perhaps brought on by viral infection?" I guess I would ask this question after determining that regular biologically identical cortisol supplementation (like Cortef) did not work at all.

I would think it might be worth a try, as it could possibly pretty dramatically improve the quality of one's daily life if done properly.

Kind Regards, Wayne

 

[Wayne]

Cortisol to Reduce Inflammation

I have done am and pm saliva cortisol test and everything was normal. But saying that, cortisol also has anti-inflammatory properties which could be helpful to counteract inflammation from viral infections like cytokines, RNase etc and eventually the adrenal glands that make the cortisol burn out causing lowered cortisol secretions and increased symptoms as now have increased inflammation. Just one of my hypothosis.

Hi Heapsreal,

Very good points. Very similar to how I've long thought.

I think your points illustrate just how important cortisol is. I have to say I get a little discouraged these days when I often hear disparaging comments about cortisol and how bad and dangerous it is for you. My goodness, we wouldn't be alive if we didn't have cortisol in our bodies.

I guess the trick will be to try to figure out how to weigh the advantages of normal cortisol levels with the fact that XMRV may take advantage of these levels to propagate itself and cause all kinds of other problems. Which I guess would include the likelihood of lower cortisol levels in the future from burnt out adrenal glands.

This scenario reminds of an adage I read once about ME/CFS. The good news is that it doesn't kill you (normally). The bad news is that it doesn't kill you. Lowered cortisol levels can lead to all kinds of problems, but these lowered levels may keep the XMRV virus in check so that it doesn't kill you. I don't know, maybe I'm hypothesizing a bit too much.

Thanks much for your post.

Kind Regards, Wayne

 

[Wayne]

If XMRV and cortisol are bad news, then it makes sense why the people with ME who push their bodys to the max (whilst ill), then get ME far worse (often permanently) than chilled out people who plod along and give up long before the people who become severe. Tragically, it's the medical profession who also encourage exhausted patients to push on, and increase activity and ignore symptoms. ... This will only blow our adrenal system more, and push the cortisol up - XMRV would love this.

Hi Cold Taste of Tears,

Very good points. I believe Dr. Cheney once noted that he saw no difference in incidence of ME/CFS in his patients based on personality type. But he did notice a big difference in how it played out. Type A, driving type personalities generally did far worse as they tried to push through beyond their limits. And they ended up paying a far higher price.

Some of the most tragic testimonials from ME/CFS patients I've heard are those who pushed to the max to stay functional, only to crash very, very hard. Some take years to begin to recover; it seems some never do. Perhaps finding the role of XMRV in ME/CFS can reverse some these situations.

Kind Regards, Wayne

 

[Sing]

Too much hydrocortisone

Hi Cecelia--

Sorry I was so reactive, but it was truly hell for me to be on that HC.

I had just a bit low cortisol readings in the am, a little low at midnight, but not too bad the rest of the day. I started with 2.5 mg HC, (compounded for me), and raised it gradually over a 6 week period to 25 mg. It didn't feel very good from the beginning, I got hypoglycemia and foot cramps even on low doses. At 25 mg. I got very wired and overstimulated. It was too much! So I started to back down slowly, but I was so anxious and wired, and had such scary cardiac arrhythmia that I finally just jumped off--from 15 mg to 0 mg. EVEN AFTER stopping, my body continued to react to it for 2 months! Then I crashed, and now, almost 9 months after the debacle began, I am still not back to where I was BEFORE I took it. Not good stuff for me.

Hi Dreambirdie,

Thank you for answering so specifically and nicely too. My thought is you may not have needed the additional cortisol at all. With me, an appropriate amount has immediate good effects (5 mg Cortef two times per day). I am like an overly dry plant being watered and I want to sigh with relief to come back into balance. However, when I have taken too much (a few times by accident, doubling the dose to 10 mg.), I felt pressured and irritable, apt to be angry, also overtalk; I know I'd not be able to go to sleep if I needed to. This is why I view the bodies's response as the most precise, accurate source of information about what is helpful/needed or not, and how important it is to stay within those bounds.

25 mg is quite a high dose given that normal adrenals produce 40 mg on average. So if yours were producing that or fairly close to it, you might have been 50% too high! Given the potency of cortisol/hydrocortisone, that would have to have produced some very serious effects, and did!

I am sorry you went through that and thank you for sharing your experience with the rest of us.

Cecelia

 

[Wayne]

Prednisone

I am on a higher than physiological dose of prednisone - have been for over a year - and it certainly has not made my symptoms any worse. It hasn't made them better, but if we followed the rationale of more cortisol = worse symptoms, etc I would say that's not necessarily true. I am having a hell of a time trying to get off the stuff though. And for that reason alone wish I never went on it.

Hi Dsdmom,

I'm always curious about people's reactions to these kinds of supplementation. I was wondering what amounts of prednisone you were taking and why you were taking it. Also, why prednisone and not biologically-identical cortisol?

I researched low-dose hydrocortisone supplementation for probably over a hundred hours before making a decision about supplementating. I read Safe Doses of Cortisol by William Jeffries about three times (because of cognitive issues), and read Teitelbaum's book about three times.

I then decided on the key chapters and points and reviewed them another half dozen times. Then I made up a presentation and took it to my doctor. I doubt my doctor would have consented to this type of "unconventional treatment" had I not done my homework on this. I continue to feel it's probably the very best health therapy decision I've made.

I'm wondering if your relatively high dosage supplementation caused your adrenal glands to quit producing cortisol, because it didn't sense the need to do it. Perhaps this is why you are having a hard time withdrawing from it. Sounds like a situation where a very cautious, go slow approach would be best. I used this very same kind of approach when withdrawing from clonazepam. Gradually lowered my dosages over a one-year period.

All the best to you as you try to get this all figured out.

Regards, Wayne

 

[Wayne]

Too Much Hydrocortisone

25 mg is quite a high dose given that normal adrenals produce 40 mg on average. So if yours were producing that or fairly close to it, you might have been 50% too high! Given the potency of cortisol/hydrocortisone, that would have to have produced some very serious effects, and did!

Cecelia

Hi Cecelia,

Thanks much for your reply to Dreambirdie. I was just going to post about the same thing. I'm wearing down here, and I think you did a much better job than I could have. Thanks.

Dreambirdie, I'm sorry to hear about your recent experience (and continuing) with supplemental hydrocortisone. I can't help suspect that if you do have the XMRV virus, that it could have caused a higher replication rate and contributed to some of your extreme difficulties.

I'm curious why you didn't step back from this supplementation as you noticed increasingly difficult symptoms. I've tried two things in the past; fludrocortisone, and synthroid that did not work for me. In each case, I took a single dose, and decided I would never, ever take it again. Awful, awful feeling in both cases. Just did not feel right in any way whatsoever.

My doctors in both cases encouraged me to keep taking it for a while saying my "body would adjust". Well, I didn't want my body to adjust, period. I was wondering, did your doctor "pressure" you to keep taking it? If so, are you upset with your doctor who you worked with on this? Upset with yourself? Upset with hydrocortisone? Anyway, you may not want to talk about his anymore, and can't say as I would blame you!!!

I think I just might head over to the dream thread for a while.

Warm Regards, Wayne

 

[dsdmom]

prednisone

Wayne
I was initially put on a very quick taper of prednisone for a headache from hell. Unfortunately while I was tapering down (which I had done in the past no big deal) I got stuck @ 20mg. Literally could not drop any further without having major issues physical & emotional. Yes, at this point, my adrenals are definitely cooked because I've been on the pred long term. However, even at what most people would consider a slow taper I have been having extreme issues that leave me unable to function. Right now I am dropping by .25mg every 3-4 weeks. Yes, that's 1/4mg. I have had to get it compounded to that level. No doctor I have seen (including endos) have ever seen someone so sensitive. It sets off major autonomic flares for me so I am just doing my best to come off as quick as I can...which unfortunately is not very quick.

I, too, have read a bunch about hydrocortisone and teitelbaum;s book and one of my docs has suggested that maybe I will need that once I am off the prednisone. So we'll see....