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January 22nd's Dr Mikovits presentation discussion

julius

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I don't think with CFS that any typical model of HPA axis dysfuction explains what's going on. Normally cortisol and testosterone have an inverse relationship. As cortisol rises, T is suppressed, and vice versa. So, if the adrenals were underfunctioning, the testes would be overproducing T.

In CFS this is not what happens, both are typically low. From all the testing I have had done, it appears that my glands are producing enough of these hormones, certainly testosterone anyways. But somewhere after that they are disappearing. When I say 'used up' by XMRV I know I am oversimplifying.

The specialist I saw about the low free-T said he though my T was binding too aggressively with albumin. I'm just saying it could be a similar process to that.

Something has to explain why cortisol and testosterone are both showing up low in this disease. It is not a common occurrence outside CFS.
 

garcia

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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)
I hope someone will add the above to the transcript in square brackets []. That is what I do every time there is a medical term which I suspect most people will not know.
 

garcia

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In CFS this is not what happens, both are typically low. From all the testing I have had done, it appears that my glands are producing enough of these hormones, certainly testosterone anyways. But somewhere after that they are disappearing. When I say 'used up' by XMRV I know I am oversimplifying.
I have the opposite problem. I have low total T, but my free T is not so bad because I have low levels of SHBG which binds onto testosterone. We should really have a testosterone thread.
 

julius

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I have the opposite problem. I have low total T, but my free T is not so bad because I have low levels of SHBG which binds onto testosterone. We should really have a testosterone thread.

Do you know your cortisol levels. If it is also low then it is still the same basic thing I was suggesting, low cortisol with low T. It's a different measure of T, but still low.
 

Forebearance

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notes on Dr. Mikovits' talk

Here were some more things I took away from the lecture:

The form of XMRV in CFS is different than the form in prostate cancer. So you don't have to worry that you've given the men in your family prostate cancer.

We should be following all the same types of precautions that HIV patients follow: don't share toothbrushes or razors with other people, don't donate blood or semen, have protected sex.

But it's safe to hug and kiss us. :)

The best minds (I guess she meant in the world of retrovirology?) are excited about XMRV and are working on it.

The WPI would like us to participate in their clinical studies. Judy noted that why pay for a blood test when you can be a part of a clinical study and get one for free? She also noted that the WPI wants either our money or our blood. lol

The XMRV virus is oncogenic -- it causes cancer, and it is ITSELF a neurotoxin. Geez! Not only are we made extra sensitive to neurotoxins, but the virus itself is a neurotoxin. No wonder we can't win against this thing.

I really like that Judy brought up how XMRV could explain cases of chronic Lyme disease. I wish she had also talked about cases of mold poisoning.

If 3.whatever % of the population have XMRV, then that is 10 million people in the US. Not all have CFS, of course.

However, the healthy controls they used for their study all came from the area of Reno, Nevada. What if the area around Reno had some kind of XMRV epidemic that most places have not? We know that part of Nevada was a CFS hotbed. So I would want to see more healthy people in other areas of the country get tested.

Forebearance
 

Anika

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Here were some more things I took away from the lecture:

The form of XMRV in CFS is different than the form in prostate cancer. So you don't have to worry that you've given the men in your family prostate cancer.

We should be following all the same types of precautions that HIV patients follow: don't share toothbrushes or razors with other people, don't donate blood or semen, have protected sex.

But it's safe to hug and kiss us. :)

Forebearance
I really appreciate the summaries that have been given on the Dr. Judy M talk.

I had not heard before, about precautions to take beyond blood, extending even to toothbrushes, which means to me saliva, although then wouldn't kissing be a risk? And the caution about protected sex, is news to me too.

Anika
 

Kati

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I really appreciate the summaries that have been given on the Dr. Judy M talk.

I had not heard before, about precautions to take beyond blood, extending even to toothbrushes, which means to me saliva, although then wouldn't kissing be a risk? And the caution about protected sex, is news to me too.

Anika
Annika the risk with sharing toothbrushes is that some people's gums bleed easily so there is a risk of blood exchange in the case of razor blades or toothbrushes. In case of HIV, there is no risk with saliva.

The precautions she recommends at the moment are the same as HIV because they DON'T KNOW how XMRV is spread.
 

fds66

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OK - I'll summarise briefly what I took away from that talk.

I was interested in the scientific details of the talk and feel I know some more about the processes now which I appreciate. I know it was over lots of people's heads but I'm a scientist and love to know the details lol.

The thing that surprised me was that the PCR seemed to miss a lot of XMRV infections. The part about testing multiple samples was a big surprise. It really confirmed that ordinary PCR seems to miss an awful lot of positive infections - using other methods to determine that they are indeed positive. That may explain why other labs are having zero results with PCR. I was a little surprised that that information has taken that long to emerge though. I will be very interested to find out why the PCR gives such poor results though. Interesting idea that maybe the XMRV virus reservoir isn't in the white blood cells.

The evidence that they came up with seems pretty convincing that XMRV does exist and is a whole virus not just snippets. Also they have done a lot of work to rule out contamination so you can't really dismiss this easily. I think they did find something and now it's a case of finding a proper validated test for it so that people have a decent tool to measure it and then the real work can begin.

I still find that no-one has come up with a idea of why there have been outbreaks and how the mechanism of XMRV might fit into that. I'm still not convinced of any theory yet. Judy Mikovits was pretty vague about that one.

It was interesting to hear theories based on HIV and AIDs but I am worried that people make too many assumptions about things that way and that XMRV may be totally different.

One thing that struck me was if XMRV is sensitive to cortisol then maybe some of the psychological treatments that appear to help some people maybe even just partially may be to do with reducing the stress hormones. Don't shoot me - it's just a vague feeling I have.

I am still not convinced that anyone understands the effects of progesterone etc - it seems to be inconsistent in how it affects people. I am waiting to hear what they come up with for that one.

I was encouraged to hear that an antibody test was well under way.

I am still confused about the culture test. When I read up about culture testing I though they used some antibodies to detect the XMRV but then I saw a slide that I think said they used PCR on the culture - may be mistaken though. Will have to look that up again.

Of course having a son that was born while I had ME has me worried about transmission to him and what that might hold for his future. He's healthy at the moment thank goodness but I'll be watching those family studies when they get going. Sounded like the approval to start those wouldn't be long.

Of course more answers will be there once more work is done and one of the big holes at the moment is whether this retrovirus causes ME, how we might have caught it and whether we will pass it on to anyone else. It sounded like that was all work for the future.

I watched this all a couple of days ago so this is what has settled in my mind.
 

hensue

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Thank you fds66 for those who us who are not so scientifically inclined which may be just me on this board. I really appreciated you putting things in a laymens term that I understand! Keep it up and if you can you will be my interrupter!

Please keep it up and all of you who can say these scientific terms a little less techinical.
 
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Forebearance,

I think you might be mistaken about healthy controls being all from Nevada. I was just trying to listen to it again, this time with my husband, and I heard that they took from two facilities in Nevada. But one of those, the one that has multiple family members and was looking into immune system stuff, had samples from all over the world.

Correct me if I am wrong.

Tina
 

Forebearance

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Yes, Tina, my mom reminded me that the healthy controls were zip code matched to the sick people! So they came from all over the world, too. I'm so relieved to be wrong about that.

Forebearance
 

kerrilyn

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Hearing Dr. Mikovits made me a bit nervous because I've been trying to raise these 2 hormones. I thought progesterone had 'protecting properties' to help balance estrogen because too much estrogen is not good either, including cancer risks. Couldn't estrogen play some sort of role with XMRV too? I've just always thought of it as my 'out of control' hormone because the balance is not there.

I started using bio-identical prog cream 6 months ago and it's helped a lot for endometriosis. I was also low in free testosterone so the doc gave my cream for that too, hoping it would increase my muscle strength/stamina. It didn't. Very quickly my testosterone levels became too high, and I was grouchy. Something is going on with my testosterone to rise so quickly and I figure the HPA dysfunction is part of it. I don't see the benefit of continuing with it, but wouldn't want to go off the progesterone.

I haven't noticed ill-effects by raising my progesterone, but have always had symptoms increase with stress, so figured cortisol is the bigger factor for me.
 

Abraxas

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Hi kerrilyn and welcome :Retro smile:

I'm curious about whether there may be a possible role of estrogen in XMRV as well - as I too have endometriosis (an estrogen dominant disease which apparently affects a significant number of women with ME)

The symptoms of the endo are as severe as my ME symptoms, so I can understand that If you are having some success using progesterone that you'd be reluctant to stop using it, but as you say, it's confusing to hear what Mikovits says about its relationship to XMRV and perhaps cortisol is the bigger factor.

Does anyone else have any thoughts on this?

I guess unless you have been tested and have a positive XMRV result, there's no reason to change your treatment for the time being if it's helping you.
 

ukxmrv

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Dr Mikovits said this in the Prohealth talk

Progesterone, androgen receptor and testosterone and we don't know all the other hormones. There are a lot of oestrogens and oestrogen like compounds even in our environment these days which might tell us maybe there's an oestrogen compound that's not a naturally occurring oestrogens in a plastic in the environment that is actually turning on the virus.

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

It looks like she is thinking of all sorts of theories.
 

ukme

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Hi everyone, does this cortisol/XMRV connection mean that people with low cortisol should NOT try to supplement with adrenal supps to bring cortisol levels back up to normal? I am starting to feel worried that by adrenal supplementing, which has nicely increased cortisol levels, I am actually making matters worse by feeding the retrovirus!
Could someone please clarify?
Many thanks.
 

froufox

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Hi ukme,

What adrenal supps are you taking? Are you taking adrenal hormones like cortisol or just regular adrenal supplements to support the adrenal glands? I take adrenal support supps eg pantothenic acid and sometimes adrenal glandulars - these dont make me feel any worse, and make me feel better whereas when I have tried taking the hormone cortisol, although it does seem to help a little, it ends up making me feel worse too and I seem to be quite sensitive to it, even at small doses - its obviously much more potent than regular supps and I have wondered if it has fed the virus directly as Judy Mikovits has stated. I wouldn't have thought that taking other regular adrenal supps like glandulars and vit B5 would feed the virus as they just lend support to the adrenal glands and probably wouldnt increase cortisol too much, but then I don't know for sure. Its a tricky one as if you're low in cortisol you're stuck in a catch 22 as your adrenals obviously need proper support. I am very low in cortisol but trying to get by with regular adrenal supps as I said and just supporting my immune system.

How do you feel on your adrenal supps?

Hi everyone, does this cortisol/XMRV connection mean that people with low cortisol should NOT try to supplement with adrenal supps to bring cortisol levels back up to normal? I am starting to feel worried that by adrenal supplementing, which has nicely increased cortisol levels, I am actually making matters worse by feeding the retrovirus!
Could someone please clarify?
Many thanks.
 

ukxmrv

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UKME,

We don't know as yet but it has been discussed on other threads on this forum.

We don't know if our cortisol is low because the virus is using it all and supplementing will just make it worse OR there is a problem above the cortisol production part (the adrenals) and that the body is deliberately keeping production low on purpose.

I've got low cortisol plus had a adrenal stimulating test which showed a low (blunted) response. It could mean my adrenals have been pushed so hard they have given up or that the problem is before the adrenals.

There has been quite a bit of input on other threads from people who have supplemented and say that they feel better.

Lots of good ideas on this forum but no one has the absolute answer for everyone yet.
 

ukme

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Thank you for your reply froufox. I must confess I am posting as mum/mom to ukme junior, aged 14. The adrenal supplements are called Nutri Adrenal Extra a 'high potency adrenal concentrate' (bovine source from New Zealand).

24 hour adrenal stress profile saliva tests she has done have shown an increase in cortisol from almost non-existent to near-normal after taking these supps for 5 months. Now continuing to take reduced adrenal supps for support. Of course I am now wondering if it is actually best to keep the cortisol low... oh my I would hate to think I was making the situation worse.