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XMRV treatment. Q&A with the author of the study about treatment

Discussion in 'XMRV Testing, Treatment and Transmission' started by kansas_K, Oct 17, 2009.

  1. joyscobby

    joyscobby Senior Member

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    I thoght it was slower mutation because it was genetically close to the prostrate cancer one ans the original mouse one. (hence a vacine as it doesn't fundementaly change)
    I didn't hear that it was slow to replicate ie go from one to two to whatever number.
    I think I will have to look at it again
     
  2. cfs since 1998

    cfs since 1998 *****

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    What if we put these things together. If antiviral drugs won't work as well on XMRV because it replicates slowly, but cortisol and inflammation turn it on, could we perhaps deliberately try to turn on the virus while taking an antiviral drug (preferably a drug proven to inhibit XMRV replication in a clinical trial)? Then when the reservoir of latent virus is reduced, we could go in the other direction and then switch back to anti-inflammatories again? Just a thought.
     
  3. cfs since 1998

    cfs since 1998 *****

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    Oh, and if inflammation can turn on the virus, could that be why some people reportedly get CFS after being injured in an accident?
     
  4. dmarie4301

    dmarie4301 Guest

    Inflammation and Fibro

    I love your theory about inflammation turning on XMRV to create Fibro. It seems so wierd that people in car accidents end up in so much pain and fatigue that doesnt go away. That's not how I got sick, but it certainly has had me puzzled about the relation of whip lash to pain/fatigue forever.:rolleyes:
     
  5. Sing

    Sing Senior Member

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    Hormones, Inflammation,

    Since we are doing some guesswork here and not even sure if that was a real interview with JM, I will add some guesswork of my own. Quoting JM from the interview: "The goal is to keep the virus quiet and the homeostasis as with the elite controllers of HIV. There are two GRE sites in the CIA acting elements of the virus. These respond to hormones and cortisol." The implication here is that a lot of hormones and cortisol turn up XMRV. I am wondering about the flip side of this. Does XMRV suck up hormones and cortisol, causing the low cortisol and low endocrine functioning in ME/CFS? That has been my situation for years, low cortisol and other hormones.

    But, get this! This past year I started going to an Endocrinolgist who is willing to prescribe hormones to me to bring them to normal, average levels. This is unusual given that I am past menopause. I wanted to give it a try to see if my energy and general health improved. Well it did, a little--but--maybe this is coincidence--my arthritis has increased and fibro symptoms definitely increased. I go into increasing pain now from wearing any type of soft fleece or nubbly cotton, or carrying a bag or old fashioned camera. Allodynia.
    More hormones, more arthritis and inflammation, more Fibro pain--from more XMRV action?

    I am backing down from the hormones now and upping the anti-inflammatories.

    Cecelia
     
  6. Cloud

    Cloud Guest

    To me, the idea that cortisol may "turn up" the virus explains a lot, in particular, the "crash" that follows stress which is obviously about more than just Cytokine Storm. The other reason is that even though I have sub-clinical adrenal insufficiency, taking Cortisol supplementation only provides 1-2 days relief, and then I crash worse than before the med. I think that increased Viral replication secondary to increased levels of circulating cortisol, offers one of the best explanations for some of my symptoms in particular, Flares. I had actually thought of this years ago because that's exactly how it felt.
     
  7. froufox

    froufox Senior Member

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    Yes your experiences do make sense Cecelia and Ross. I guess it depends what dosage you are taking too...I understand that 10+mg starts to act immunosuppressively, in CFS anyway. I took Cortef mostly 10-15mg for 6 months so for a fairly length time, and I crashed horribly when I weaned off and I havent been the same since. I shouldnt have even taken it in the first place as my cortisol levels were normal although I had all the classic symptoms of adrenal fatigue...:rolleyes:

    But I wonder if having XMRV can block absorption at the cellular level because my saliva cortisol is below the range, the last time I had it tested anyway, but my urinary free cortisol is normal/high so my adrenals are obviously working ok but the cortisol is not being absorbed, so functionally I am deficient. Perhaps because the virus, if I have it, is blocking the receptor at the cellular level and also due to me making matters a lot worse by taking exogenous cortisol which has helped to feed it.. Though when you have several infections any one of them could have been stimulated by stress or by taking cortisol, so it is very difficult to work out which is causing the symptoms and perhaps it is more likely to be more than one of them taking advantage of the situation.
     
  8. srmny

    srmny

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    Hi,

    I have been injecting HGH (Human Growth Hormone) since 2001. I started at 0.1 mg at bedtime and over the years have gone as high as 0.6 mg. The last 5 years I have stayed at 0.4 mg. Building up growth hormone levels is a very painful process for CFS patients - my body crashed horribly every time I increased the dosage and and it took a few years before I felt comfortable saying this hormone was helpful. I credit it with breaking a cycle of insomnia that would prevent sleep for 2 and 3 days at a time. I believe it also helped me to sleep longer than 4 hours at night. The two times I have had to stop using it I gained weight and stopped sleeping. GHG has never made me lose weight. I think not sleeping just causes weight gain.

    Just a couple of months before I got sick (car crashes triggered) my thyroid blew up like a linebacker and I was DX with Hashimotos. I took mega thyroid supplements for years but now it is easily controlled.

    I also am taking Hydrocortisone 5MG twice a day. My provocative cortisol level was right on the borderline and the Hydrocortisone is prescribed by my pain doctor as a 6 month experiment. I have not noticed any change and will start weaning off it next month.

    I did read something recently about HGH's role in the immune system and XMRV but can't remember what or where. If anyone has any idea how it could be helping beyond making me fall asleep I would be interested in hearing your views.

    Thanks.

    srmny
     
  9. Cloud

    Cloud Guest

    Great ideas....

    srmny: GH also has something to do with supporting the RnaseL. I would have to re-research to tell ya for sure, but it does have Immuno-supportive properties as well as it's othet endocrine functions. I was diagnosed with low GH and Dr Peterson was going to put me on it, but the follow-up GH challenge test, which is worthless, was low-normal....the insurance won't pay (costly) for GH if you test normal. Also yes, sleep problems can cause weight gain.

    froufox: Great ideas as well, especially the virus blocking absorption of cortisol. And yes, It's typically over 10-15mg of Cortisol supplementation that begins to cause immune suppression. But, I think that can be adjusted up if one has adrenal insufficiency anyhow. The levels of "Total" vs "free" Cortisol are going to be different. I can't remember which saliva is right off.
    I feel great on prednisone, but not cortisol. But I won't take prednisone because unlike Cortisol, it will cause immune suppression at low doses....free ticket for a bug replication party.
     
  10. srmny

    srmny

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    Hi Ross,

    Thanks for the reply - I will try researching it using Rnase-L in the search. I need to go through my records and see if I have been tested for Rnase-L.

    As far as HGH goes, over the years I have been on 2 different brands. When my insurance company changes the brand available changes. I did test very low using the challenge tests - I have had to be retested 4 times with various challenge tests and I have always been low. I suspect this may be a problem of my endocrine system since I test low on everything. Also, my sister used HGH (tested very low too) so either it is genetic or she too had CFS. She was DX as BIPOLAR and believed them! Once she figured out she wasn't Bipolar I suspect it was too late for a CFS diagnosis. That's when she started HGH. She did get better but still appeared to have CFS. She would not entertain the idea that she had CFS. She said if she had it she would rather be dead. My husband has made similar statements over the years.

    Anyway, my insurance does cover the HGH but it is always a struggle. They generally make you take 2 different challenge tests. The only insurance company that did not keep me waiting on a decision for months was Medicare Part D! And when I fell in the Part D donut hole and had to pay for it I was surprised it was not more money. In the past any monthly bill showing the retail price was around $2500. But when I had to pay for it I was charged around $700. I know that is very expensive but it was considerably less than I had expected. I don't know if that is the same price you could get it for if you bought it on your own. I know when I was wrestling with an insurance company years ago my pain doctor told me about a different brand that would was cheaper. She showed me the web page and offered to write me an RX. She had tried it herself for a few months. I will try to find out where she bought it.

    srmny
     
  11. froufox

    froufox Senior Member

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    Hi Ross,

    Saliva is free cortisol, whereas the "total" includes cortisol that is both "free" and "bound". The part that is bound is attached to CBG (cortisol binding globulin) but there is a small percentage that is bound to albumin too. My urinary free cortisol is high which seems to be the reason my saliva levels are low.. in other words I am producing it but because something is blocking proper utilisation my body is just dumping it because the liver doesnt like excess hormones floating around so sends a signal to the kidneys to get rid, hence the high urinary levels. I think thats wots going on anyway!!

    I took prednisone once and I felt a big difference in my energy so it definitely felt like quite a powerful substance and very strongly anti-inflammatory I guess because it is 4 times stronger than cortef....but it also seemed to be quite toxic to my liver as I looked really sick on it and my skin turned yellow :eek: I bet the bugs had a bit of a rave then too!
     
  12. Scavo86

    Scavo86 Senior Member

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    Your HGH point makes a lot of sense Susan, and definitely dovetails with what I learn at medical school. HGH, I believe, plays a large part in why we see the majority of children recovering from ME whereas adults don't fair so well. Additionally I think Dr David Bell subsribes to this school of thought. In the wider medical world, kiddywinks can put up with a whole lot more with their bodies whether that be operations or trauma etc just because of the amount of HGH being produced as a child. This is why i am holding out hope that having contracted ME at 22 I might just be pumping out enough of the stuff to aid recovery but I know once one hits 30 far more interventions will be needed to assist in getting better.
     
  13. Solon

    Solon Guest

    Many people still confuse viral CFSID with other forms. This is sad because it will lead to complex situations.
    If high cortisol does or doesnt turn on this particular virus it is very hard to say before we all get tested about it, but one definate accompanying symptom would be transient or maybe permanent increase in the number and size of lymphnodes. If you get this lymphadenopathy while being under periods of great physical/mental stress or surgery or other conditions then we could be talking about direct cortisol effects (probably proinflammatory neurotransmitters and cytokines are to blame more than cortisol actually)

    Nevertheless this is very hard to occur because if it was so, then each and every time you smoked, drunk chocolate, coffee or watched tv then your viral titers would explode since cortisol is greatly affected by this processes (in some cases like smoking or drinking coffee it spikes to 2-3 times its basal levels)

    I dont know how this discussion started or what we are trying to prove here. It is known that EBV and in general many herpes viruses are triggered somehow by stressful events and moderate to heavy exercise in some individuals, but whether this happens or not with XMRV is still a mystery. Still it could be something genetic that takes place in some and not in others.
     
  14. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    > we could be talking about direct cortisol effects (probably proinflammatory neurotransmitters and cytokines are to blame more than cortisol actually)

    Youre aware that Mikovits states XMRV has a glucocorticoid response element, ja? Its a slightly obscure piece of news at this point. Anyway, thats about as direct as can be. What it is, is a short DNA sequence that binds the cortisol receptor after the latter has bound the cortisol hormone molecule. The cortisol receptor, once bound, would influence transcription from the integrated proviral DNA.


    > each and every time you smoked, drunk chocolate, coffee or watched tv then your viral titers would explode since cortisol is greatly affected by this processes (in some cases like smoking or drinking coffee it spikes to 2-3 times its basal levels)

    Does that happen only if you are a "naive" user, or will it sill occur if you have used that same dose of caffeine daily for a year?
     
  15. Cloud

    Cloud Guest

    Hey Guys......just back from another treatment with Dr Peterson. My xmrv results are still pending. Get them next trip in 2 weeks.

    The HGH issue is very interesting. Thanks for the info on that srmny. But, $700/mo precludes treatment for me. I was thinking I had seen it for $250/mo and that was too much $$. But, your right that I may be able to get my part D to pay for it if I keep after them. My part D initially denied coverage on my vistide as well, but with a pre-auth and subsequent appeal from Dr Peterson, they ended up covering a year supply at 100%. Vistide costs $900.00 per treatment and I get one every 2 weeks which = about $2000.00/mo. So, maybe HGH is possible too.

    One of my very first symptoms when I am going into a flare is that I start voiding (pee) off more fluids than I had taken in over the prior 3 days. And I do it fast.....in like 2 hours. This points to pituitary. I wish it were that simple.
     

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