Significance of XMRV Cortisol Receptors

[susan]

Hydrocortisone

Hi Athene,
I know a bit about Hyrocortisone. Far far safer than prednisone, I think about 5 times weaker. If you are afraid, search out the book "Safe Uses of Cortisol" by an endroncrinologist...W.Jeffries I think. He says Drs are afraid to use hyrocort and they dont need to be that cautious. Dosages are different for each drug. My Dr who has CFS takes 20 mg a day of hydrocort or she said she would not make it thru the day.

It burns my stomach but I cant get out of bed and survive without some form. I take a natural form ...raw adrenal glandular from the USA called Isocort and this has saved me. Also I talked to a compounding pharmacist and he gets people to try rubbing on a cream that has 1% cortisone in it on the upper inner arm Am and early afternoon. He says a pea size is equivalent to you taking orally 10% of hyrdocort. He says it is better if you get it compounded into a better base like a macadamia nut cream so its delivery into the skin is better.

Isoscort comes from the cortex of the adrenal and works well....about $27 .00

 

[Snowcat]

HC vs. Prednisone

Hi, Athene,

I also know a little bit about hydrocortisone. I strongly recommend Jeffries' book as well, though because it is a medical book it's expensive unless you get lucky and can find a rare used copy. The cheapest place to get it is usually from the publisher in paperback form:

http://www.ccthomas.com/details.cfm?P_ISBN13=9780398075002

If I understand correctly, the early studies on cortisol were done using very high doses - 4 times what the body normally produces. Because this resulted in dangerous side effects, people became afraid of it and stopped using it in all but very limited circumstances. Currently, there is a movement to use physiological doses (designed to restore the body to a normal level) for low level adrenal problems in amounts ranging from 10-30 mg per day, preferably split into 3-4 doses. There is a lot of disagreement between doctors as to how much is too much - my original doc said as long as I didn't go higher than 30 mg, I'd retain residual adrenal function; others feel this limit is 15 or 20 mg. Because there are no studies and none are likely to be done on such an inexpensive drug, it's hard to know what's true.

I'm currently on 25 mg a day split into 3 doses (12.5 am, 7.5 noon, 5 pm dinner), and have found it profoundly helpful in stabilizing my energy. For example, if I get a poor night's sleep now, I'm tired the next day, but not completely destroyed, like I used to be. Adding 50-100% more in times of stress for a day or two, as the body normally would, helps minimize crashes if I get sick or have a busy day where I won't be able to rest. (If you raise your dose this way for more than two days, you have to wean yourself slowly back down to your normal dose or you can crash badly.) I also tried Isocort but got no benefit from it - as an over the counter supplement, it's not regulated the way the drug is and I've read on other boards that some have found it's about half as effective as actual HC.

Because it's unknown how much being on HC is suppressing my already weak adrenal function, I wear a Medic Alert bracelet so that, if I'm ever in an accident, the paramedics will know to give me an emergency dose my body may not be able to produce on its own. So there are risks to being on it, but I decided to do it because my doctor suspected my adrenals were already weak enough that they might not function properly in an emergency anyway, so he thought wearing a bracelet was a good idea regardless.

I've never been on Prednisone, but my understanding is that it's longer lasting and stronger. 40 mg of HC equals 10 mg of Prednisone, so you definitely take less if you're on P, and I think you may only need to take P once a day. I was also told by a doc friend that HC requires some processing and therefore helps keep certain functions more active than P, but I'm not totally sure what that means or if I got that right.

Hope that helps. It was a big decision for me to go on it, but I've experienced very real benefit, and am glad I made the choice.

 

[Mark]

Gupta

I'm not really up to date with this thread but I think I have the gist of it...I hope I'm not about to get something horribly wrong...

Firstly Hi Marco, I think your posts in this thread have been really excellent!

I want to say two things really. First, that I came across Gupta's amygdala theory for the first time a week or two ago (I've not been following anything ME online for a few years, got fed up with it all until X came along, and my symptoms have been stable enough the last few years for me to turn my attentions to having some kind of life - so I'm catching up on a lot). The whole thing really struck so many chords with me, and what you've talked about above in terms of the mind/body model sounds exactly how I would have described it, all along. Before I got ill, I was quite into mind/body and there is IMO undeniably a massive amount of profound truth to all that. It's just that it only goes so far, and there still is a real world out there too, with real, physical things like cancer and XMRV that I really don't believe you can think your way out of - there have always been tales of occasional miraculous healings and I don't think they tell us anything much frankly. In fact the way all this should be conceived of - just the way you seem to be saying Gupta does - was so obvious to me long before I got ill that the ludicrous mind/body debates with physicians were unbelievably frustrating for me. So anyway, where I'm leading to is: when XMRV allows us to kick the Wessely's of this world out of our lives for good, it would be a great shame if we swung the pendulum to the other extreme and didn't preserve what is right, good and honourable in mind/body, meditation, spiritual healing traditions and everything like that. Wessely's co-option, misunderstanding, corruption and abuse of mind/body concepts is especially sick in this light. OK, it is in every light...

Second thing is, there's one aspect of the amygdala theory that really jumped out to me; if I just state how I recall it, it's the idea that the fundamental regulatory mechanism has stopped working? (really hope I'm not confusing this with something else). What sounds really sharp about that to me is that on so many biomarkers and symptoms, there are some patients who are extreme one way and some who are extreme the other, yet somehow we sense that we all have the same underlying cause because of other similarities. And that's what makes no sense to doctors and appears like completely random noise. So: not just cortisol, but some are extreme TH1 and others extreme TH2 (reacting/triggered either by viruses or environmental and food), pretty sure there are other examples I can't think of right now. Never heard of the "tired but wired" thing before, but that's really intriguing too. Anyway, some kind of disruption of regulation, being whacked too far one way or the other and having lost the ability to naturally balance things out, makes a lot of sense to me.

No idea how all that connects with XMRV though, still don't believe XMRV is an incidental infection.

Hope I haven't missed the point or just re-stated the obvious, but I did want to respond to Marco's excellent posts and say that Gupta's amygdala thing is the only theory that's apparently disconnected from X but still really attracts me as having something to offer. Will re-read all those posts later for sure.

 

[Sing]

Dear Athene,

Wayne and I have both posted elsewhere about using Cortef, the better form of hydrocortisone (rather than the generic) in both of our opinions. I'm glad the others here have explained about how prednisone is 4X stronger and recommended Dr. William McK. Jeffries book, Safe Uses of Cortisol. Worth the price!!

I've been on it for 10 years, 5 mg twice a day. I had to go off for 3 months once for endocrine testing, etc. and adjusted back "fine"--ie, no damage. I just returned to a lower energy state as before.

I think finding the amount and type that works best with your system is key and when it is right, I think you will know it by feeling in better balance: neither pumped and pressured (too high) or drained with a sore throat, etc. (too low). At least that is from my experience.

Adding the part about politics:

Drug companies have not tested it for years because the patent ran out and there is no money in it! It is a cheap and easy drug to make, apparently. Doctors don't like to prescribe it because of the bad rap it got initially when it was prescribed in way too high dosages, and because there had been so little research on it. The drug companies would rather work on new drugs which they can charge a lot for.

Cecelia

 

[dmarie4301]

Cortef has helped me

Hi all! Cortef (15 mgs, spread throughout the day) is the ONLY thing that has given me any strength. BUT, Im finding that my low thyroid is difficult to treat, I get splitting headaches when I try to get on any kind of thyroid. Im not responding normally to thyroid meds..I cant help but wonder if something is screwed up in this department too....

But anyway, dont take away my Cortef! Or I will have to collapse every chance I get.

Just my two cents worth on this thread.

 

[Wayne]

Extra Cortef Working Fine

I only have sporadic access to the internet as I continue with my travels--travels that have gone in different directions than I had anticipated.

Some of what I'm doing has required extra energy than I had anticipated needing to expend. In "Safe Uses of Cortisol", Dr. Jeffries recommends taking more than a normal daily dose of Cortef when extra effort of any sort is required.

After reading about XMRV being stimulated by cortisol, I was a little more hesitant this time around to take more than my average daily dose. Well, I really felt I needed it, and upped my daily dose from 20-25 mg to 30-35 mg at times.

Turns out this was a good thing for me to do. I've come to firmly believe that adequate cortisol is necessary for optimal immune system functioning--which I believe the extra Cortef gave me. This to me takes precedence over any concerns I had about cortisol (Cortef) stimulating XMRV.

Best Regards, Wayne

 

[Snowcat]

I've had a similar experience, Wayne. Traveling overseas this summer, I doubled my HC for two days and then weaned slowly back down to help me deal with the jet lag. Not only did the extra HC drastically reduce my jet lag problems, I also didn't come down with the nasty flu my husband picked up on the plane. So it appears HC has actually made my immune system stronger.

I was also concerned when I read in this thread that XMRV may in some way utilize cortisol, and I will be watching for developments in this area closely. But since my own experience is that cortisol improves rather than worsens how I feel, I'm not inclined to change anything until there's good, solid evidence to do so.