January 22nd's Dr Mikovits presentation discussion

[Kati]

Note to moderators: I have started a new threat to discuss the video released today since the other threads are getting large and do not discuss the information per se. Feel free to redirect if there is another thread started or you feel it should all go in one thread.

I have just finished the presentation part, and what strikes me most is the slides at around 60 minutes that talks of hypothesis of XMRV induced pathogenesis. She mentioned that testosterone and progesterones, cortisol can turn on XMRV to be active.

I am wondering if that would explain why we would be depleted in these hormones? (my cortisol is low, and just recently my periods starting going bezerk-

Anyone?

 

[cfs since 1998]

Here is the link:
http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=15114

The audio quality is terrible

 

[julius]

Hey Kati,

Two possibilities I can think of;

1) the body has conditioned itself to produce less of these hormones in order to avoid stimulating the virus
or
2) the body produces normal amount but it is used up by the virus

Personally, I would go with the second. I have extremely low free testosterone, but all other measures of T are normal. This suggests that I am producing enough but it is being used up by something. The doctor who did the tests (who specializes in men with testosterone abnormalities) told me that is what's happening, although he guessed it was "binding too actively with albumin".

 

[Kati]

I would agree also with the second hypothesis. I wonder if my weight gain is all related to that, body is storing for future needs- it seems that XMRV is consuming cholesterol and fatty acids as well- (last time I had it checked, in December, cholesterol was normal, but HDL (good fatty acid) was low. My diet is usually fairly low in fats.

That is IF I am XMRV +

 

[Sing]

I think I do have XMRV, but decided to wait on an approved test. Anyway, to add to this thread, my hormones of all kinds were low for years until I started some HRT and added some cortisol and thyroid medications too. My cholesterol is very low and the amount of protein in my blood is low. This, even though I eat a pretty high protein diet consistently. I used to be the dairy queen up until 3 years ago when I lost my tolerance for milk products. Drank nearly 2 gallons of milk a week, ate cheese, etc. and still had low cholesterol. I wonder if XMRV has been dining on my expense.

 

[ukxmrv]

Kat, Sing and all,

I am XMRV+ and am low in cortisol, progesterone but need to find my old test results to see about testosterone. I'm female.

The other thing that struck me from the video is her comment about the virus using cholesterol to replicate. I'm also very low in cholesterol (good and bad). Thanks Sing for bringing that up.

With the cortisol (if it is being used by the virus and not being kept low "on purpose") is that my short synacten test (to test cortisol productions) showed a blunted response. At the time I had this test I found a paper by an Italian team that looked at the low cortisol found in CFS and said that the "cortisol block" was above the point tested in the short synacten test. I've just looked at I can't find that paper.

 

[garcia]

I found a paper by an Italian team that looked at the low cortisol found in CFS and said that the "cortisol block" was above the point tested in the short synacten test. I've just looked at I can't find that paper.

That makes sense since the synthetic acth (synacthen test) only tests whether your adrenals respond to stimulation from the pituitary. It doesn't tell you if your hypothalamus and/or pituitary are working correctly.

 

[Sing]

Exactly, garcia. The standard cortisol testing is not correctly targeted for the problem in our systems. It focusses on the functionality of the adrenal gland itself rather than the whole system which needs to work in order to produce adrenal hormones: cortisol, adrenaline and the one that retains water in the body (which is why we pee and drink so much water, and need extra salt).

The whole system starts at the brain level with the hypothalamus, then the pituitary, then the adrenal gland. When anything impairs this signaling, it doesn't matter how healthy your adrenal gland is, it won't produce the needed hormones appropriately. Garcia, you probably know this, but I thought I would spell it out for others who read the thread, who might not know.

A 24 hr cortisol test which collects urine for 24 hrs is maybe a better standard tests, but there are lesser known tests (which I forget the name of, but they are in Dr. William Mck. Jeffries book, Safe Uses of Cortisol) which target the possible dysfunctions higher up in the HPA axis. The ASDI saliva test, which naturopaths like and regular MDs don't in my experience, also can convey a more accurate picture of the real availability of cortisol in the body.

Sing

 

[Kati]

Kat, Sing and all,

I am XMRV+ and am low in cortisol, progesterone but need to find my old test results to see about testosterone. I'm female.

The other thing that struck me from the video is her comment about the virus using cholesterol to replicate. I'm also very low in cholesterol (good and bad). Thanks Sing for bringing that up.

With the cortisol (if it is being used by the virus and not being kept low "on purpose") is that my short synacten test (to test cortisol productions) showed a blunted response. At the time I had this test I found a paper by an Italian team that looked at the low cortisol found in CFS and said that the "cortisol block" was above the point tested in the short synacten test. I've just looked at I can't find that paper.

UKXMRV, can you please clarify for me what the ACTH did to your cortisol levels, did it go higher or stayed the same? I am still awaiting the results.

If it stays the same it means a problem f adrenals (Addison's) and if it respons, it is another problem- like XMRV using your cortisol for prodution of more virus (?) purpose.

 

[ukxmrv]

It's a real pity that I can't find that Italian paper as it looked at low cortisol in CFS, then examined the whole loop to try and determine where the problem was. It said about the feedback mechanism in ordinary people and said that the same feedback look wasn't working in CFS.

So, if cortisol production is blocked further up that would maybe mean that "something" was attacking the hypothalamus or the pituitary gland?

Kati - my response was "blunted" in that some cortisol was produced but not enough as normal. The Endochrinologist said that it was not low enough to be Addison's but not high enough to be normal.

 

[usedtobeperkytina]

Or maybe XMRV causes something in the immune system, HPA axis, neurological or endocrine that causes something else in one of those systems that leads to low adrenal output.

Or could it be adrenal fatigue, such as what happens with diabetes. The organ has so much demand over so many years that it wears out. Maybe the lack of nutrition and oxygen getting into our cells, the mitochondrial dysfunction, leads to adrenal providing the energy for cells, until finally is it spent. Then, with no cortisol, cells have nothing.

Just postulating, not suggesting I have the answer. Just throwing out possibilities for sake of discussion.

Tina

 

[usedtobeperkytina]

Mikovitz speech, what I got

Much of what Mikovitz said is over my head. I actually think much of the program was intended to be for other scientist under the guise of information patients. Kind of like, "Here's what we did and why it worked and why the UK study didn't work. And here is what other scientists are saying about what we did." It seemed way too technical for general population or general patient population. Of course, it may just be that she is a scientist and just can't speak in non-technical terms.

Here is what I did glean though:

Antivirals- good for other viruses that are also causing damage because immune system is harmed by XMRV
Stuff that helps NK cells may be helpful
Do stuff to lower inflammation, cortisol and progesterone spikes, and avoid other immune system stimulants- such as other infections, toxins, etc. The continuous XMRV stimulation may lead to pivotal point of illness.
XMRV has to be amplified greatly for a test to find it
Particular primers must be used
More blood must be included in the test for the test to work
Standardized, more accurate test, expected in a month (YAY)
It was by chance she looked in LNCAP (whatever that is)
No way it was contamination
Working with CDC and they are seeing it is there
Working with other studies (about 10, was it?)
Others doing studies using same techniques even if not "working" with WPI
Three drug companies working on this and it will go quickly because they already have possible drugs on shelf that have shown no danger to humans, but were abandoned in treatment option for other illnesses
Stop replication early in infection process.
Prostate cancer study did not show infection or link to disease, no great interest at the time
Some retroviruses are geographical, as far as the disease it causes and China may have a more virulent form
Could be different versions of XMRV

This is simplified summary. I just can't deal with a lot of the technical. But this is what I got. And I see that it is a lot of information.

Tina

 

[thefreeprisoner]

Wow Tina, given that most of it went over your head.... I am seriously impressed!
Can I hire you to summarise other mind-boggling stuff for me?

Sooooo exciting....

-Rachel xx

 

[Sasha]

Thanks for the summary, UsedtobeperkyTina - the bioscience was so far over my head it might as well have been in orbit!

An additional interesting thing I did hear her say in the lecture was that Dr Coffin reckons the virus emerged in humans about 40 ago. Anyone know what sort of info is used to make that sort of estimate (is it based on observations of variations in the genetic structure of the XMRV samples from those who are positive, given XMRV's replication rate or something like that?)

 

[_Kim_]

Tina, I merged the two threads together. We already had 4 or 5 threads going about this. I think what you added was great, but we can't keep starting new threads on the same topic.

 

[cfs since 1998]

1) the body has conditioned itself to produce less of these hormones in order to avoid stimulating the virus
or
2) the body produces normal amount but it is used up by the virus

I don't think the body is smart enough to say, "oh, we have a virus that is turned on by cortisol, better shut it off." The second is certainly possible but I don't think we know enough to say the virus "uses" cortisol. What I think is happening is that the sickness state wears down the adrenal glands. We eventually end up stuck in a stable chronic low cortisol state. We can't improve from this state because the virus would be turned up and we also don't spiral down into a death spiral because the virus is turned off before we get there.

Abstract: Small adrenal glands in chronic fatigue syndrome

 

[shannah]

"Section 5

So what are our research priorities?

At the WPI we're actively working with the federal government to develop that next generation of tests. We expect that serological assay (Rachel will get mad at me but) within a month. She told me yesterday that the data were looking really good."

So what does this mean exactly? Does this mean an FDA approved test?

 

[V99]

This is what I wrote down.

The chance of having CFS and no XMRV in the study was .000000000000000000000000000000000001

A drug has already passed phase 1 of trails.

Things that can turn on XMRV - progesterone, androgens, cortisol, testosterone, maybe oestrogen, oxidative stress.

NK cells kill tumour cells and virus infected cells.

LNCAP is a cell line of human cells. They come from a 50 year old man in 1977, specifically from one of his lymph nodes. The cells are also androgen-sensitive human prostate adenocarcinoma cells. (Got this from wiki)

 

[Adam]

Luminescentfeeling posted Dr. Mikovits q & a on you tube a few hours ago. These are in 10 minuted chunks. And the audio is quite good.Link to part 1

http://www.youtube.com/user/luminescentfeeling#p/u/4/lM1luHnYsyo

 

[cfs since 1998]

"Section 5

So what are our research priorities?

At the WPI we're actively working with the federal government to develop that next generation of tests. We expect that serological assay (Rachel will get mad at me but) within a month. She told me yesterday that the data were looking really good."

So what does this mean exactly? Does this mean an FDA approved test?

I think she meant one month until VIP Diagnosics offers an antibody test, but that WPI is also working on an approved test at the same time--which will probably take longer.