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Dr Trevor Marshall
Research Team
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Posted: Sun Oct 25th, 2009 00:18 |
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if ones hypothalamus have been hit by a virus, or Lyme, or both and they are not making or releasing enough cortisol each day...
Where did you get this idea from? Surely you haven't been reading those unmoderated Lyme and CFS sites you can find on the Internet? What on earth does a virus have to do with Cortisol receptors? What is a 'cortisol receptor' anyway?
Answer - I know, I have been reading that junk science too. And I know it is being promoted by physicians who are respected in their respective communities. It is just plain wrong. Their ignorance should be obvious when they talk about the 'Cortisol receptor'. Do they mean the Glucocorticoid Receptor, or the myriad of other cortisol-responsive receptors?
Please read Amy's paper in the Annals of the NY Academy of Sciences. It explains how 1,25-D affects the Glucocorticoid and Thyroid receptors, and why CFS and Lyme patients' cortisol levels are affected by Th1 disease. Honest, I wish we could put it in simple words like the stuff you read elsewhere on the Internet, but unlike them, we have to actually help people recover 
http://autoimmunityResearch.org/preprints/ProalAnnals2009Preprint.pdf
http://www.youtube.com/watch?v=CQyA4Y5MOwc
Sorry that this stuff is so confusing. Real answers sometimes are not as easy as the bogus ones... My recent presentation in Singapore might help explain the Virus interactions a bit more clearly:
http://www.youtube.com/user/DrTrevorMarshall
..Trevor..
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Caitiegirl
Member in Phase 2
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Posted: Sun Oct 25th, 2009 01:11 |
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In the 2 years we have been on this protocol we have learned we can not keep a foot in the lyme community and succeed with this protocol. It is just too emotionally taxing to wade through the pain and misinformation that flows incessantly from all sides. In a way, after spending over a year looking for answers we have found the MP to not only be a treatment but a refuge. When well meaning people bring up "Lyme News" we are polite but I simply tell them our protocol is cutting edge and the only real hope out there right now for Chronic Neurologic Lyme. In general this ends the conversation unless they are curious about the MP. I wouldn't call Caitie a raging success but we are in a much better place than we were 3 years ago at her worst. And we have Hope and as the Mastercard people like to say- that's priceless. 
Mindy
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Caitlin(18) lyme, seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/12/09/5.7, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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thelymelight
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Posted: Sun Oct 25th, 2009 20:13 |
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Thnx Trevor and Caitiegirl for your replies and for the links provided..have printed out Amy's paper and will read when I have a spare moment..and will check out your youtube videos
Firstly, I was intially dx with CFIDS/ME in 1990....
In 1999, I saw an ME Specialist in Ottawa and had a blood volume test and a Spect Scan done.
Both were slightly abnormal...
Blood Volume Results:I have a slight increase of blood volume of 4% related to reduced red blood cell volume of 9% and an increase in plasmatic volume of 12%.
Spect Scan Results: My Dr. viewed the scans himself and felt they were worse than what was reported...His interpretation is as follows:
- Asymmetry in the Hypothalamus, not as perfused as it
should be.
- Almost a pattern of vasculitis
- Pathology in the brain
- Chronic Inflammatory condition.
So my understaning of issues regarding injury to the Hypothalamus-Pituitary-Adrenal axis stem way back to my research/reading about CFS/ME in the 1990's..I no longer follow any of the Lyme message boards/research etc and have not done so since 2007, when I started on the MP.
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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Dr Trevor Marshall
Research Team
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Posted: Mon Oct 26th, 2009 04:41 |
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A lot has happened in jus the last 18 months. Science can now explain why you are sick, and we have a much better appreciation of the steps in the recovery process. Take a look at the videos and the papers, most of what you need to know is in them, or linked from them.
..Trevor..
http://AutoimmunityResearch.org/phase1.pdf
http://AutoimmunityResearch.org/stage5.pdf
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jlunn247
Member in Phase 3
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Posted: Mon Oct 26th, 2009 15:25 |
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I still think along those lines of thought from time to time.
But from what i have learned its the benicar that resolves the thyroid problems for me.
So i think that it also helps the body manage other hormones.
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Sarc/lungs/joint pain TMJnerve pain 125D56 25D16 Ph1Mar07 ModPh2Jun07 Ph2Nov07 PHase3Feb08 albuterol
dark sunglasses hands & face exposed. Medium herx
mostly.june09
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Sunset
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Posted: Tue Oct 27th, 2009 01:51 |
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Dr. Marshall wrote:
Whenever I talk about how the HIV tat protein takes over VDR or P300/CBP, I get a total cold-shoulder from clinical medicine. Molecular mechanisms are known now, but nobody seems equipped to recognize that, or even willing to think through the implications of that knowledge...
Dr. Marshall, I am so glad you have addressed this XMRV / CFS research. I am worried that, just like with HIV/ AIDS connection, the medical community will become sidetracked once again and thus miss an opportunity to really help CFS patient's to recover. 
Several years ago I read a book that the virologist, Peter Duesberg wrote called, Inventing the AIDS Virus. In it he addresses many of the unasked questions that the science and medical communities should consider before making the pronouncement that a single virus (HIV) is the single cause of such a complex disease condition (AIDS).
I am so thankful for all the research you do to help advance our understanding of how our immune system works. It takes a lot of integrity and thought to do the research you do everyday. The facts aren't always an easy sell.
Thank you and keep up the good work Dr. Marshall!
Best regards,
Sunset
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FM, CFS, migr HA, low adrenal, RBC coinfection 11/07 1,25D70, 25D48, 7/08 25-D 21;11/08 25-D 22; 2/09 25-D 15.6; 7/09 25-D 11; 10/09 25-D 5ng/mL. olmesart 40mg+20mg SL, T4 37.5mcg QAM, T3 10-15mcg/d. NoIRs/limit lite exp
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laura1814
Member in Phase 3
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Posted: Tue Oct 27th, 2009 23:25 |
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Dr Trevor Marshall wrote:Please read Amy's paper in the Annals of the NY Academy of Sciences. It explains how 1,25-D affects the Glucocorticoid and Thyroid receptors, and why CFS and Lyme patients' cortisol levels are affected by Th1 disease. Honest, I wish we could put it in simple words like the stuff you read elsewhere on the Internet, but unlike them, we have to actually help people recover
Like thelymelight, I took 5mg of hydrocortisone for a few years when I was first diagnosed with CFS in 1997, and it was the only thing that made me semi-functional. I even called it my "happy pill" and if I was travelling or dealing with stress, I took extra and it helped tremendously. (I also took thyroid in varying doses but never found it particularly helpful.)
It also caused me to gain 30 pounds in 3 months (which I am still battling) and I think exacerbated latent hormonal issues I already had, and led eventually to a diagnosis of PCOS-- the endocrinologist who diagnosed that called the 5mg dose of hydrocortisone "homeopathic" and declared that its effect was psychological because at that level it could not possibly make a difference physiologically (I still had to wean off of it). So then I took Aldactone for several years-- which, although it made me feel "better" and even led to a "remission" of sorts for a couple of years when I was able to sort of practice law, I think also exacerbated the problem with my hormones being out of whack. Eventually I was diagnosed as post-menopausal at the age of 37, right around the same time as my relapse.
The hormonal issues have fluctuated during my two years on the MP, but I think they are being addressed at the root cause, finally.
But what I really wanted to say here is that I only wish I could read Amy's paper and make sense of it, but that's just beyond me right now. However, for me it is a tremendous thing to know that "1,25-D affects the Glucocorticoid and Thyroid receptors," and that "CFS and Lyme patients' cortisol levels are affected by Th1 disease." Forget how and why! It is enough for me now to know that it is real and that you know the answer. The real answer. Someday, I'll be able to understand it too.
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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roonie
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Posted: Thu Nov 5th, 2009 00:38 |
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| what I do not understand is that some people with severe cfs magically pull out of the illness, some 20 years later...some soon after getting cfs.How is this possible. Do we have to wait till all the planets line up or what?Joking of coarse.
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pre MP/lyme disease diognosed clinically in 2005.vommetting/diahrea back in 1981.Jaw pain/fuzzy headed feeling with ulcer soon after.chemical overexposure triggered immune system into hyper state with hundreds of symtoms.litterally!now exhuasted
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k
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Posted: Thu Nov 5th, 2009 07:19 |
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Personally, I am yet to meet or find someone who genuinely had CFS/ME who has genuinely pulled out of it and recovered 100% (the only ones that come close to this are Amy Proal and Paul Albert, Vicki SA and some other MPers). Those who have "magically recovered", when I've dug deeper / researched a bit more about them... I've found that they are not in fact living a 'normal' life but for example, take zillions of supplements, or are very disciplined about pacing, have relapses every now and then that they don't tell anyone about etc. I've also read of 'magical recoveries' that were shouted from the rooftops, but turned out to be very short-lived.
I myself thought I had recovered using naturopathic supplements. But in reality my life was still very limited. And then I relapsed worse than ever before.
regards, k
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CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept09:10 NoIRs cover-up low lux home lite exp r/t to work
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roonie
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Posted: Thu Nov 5th, 2009 19:13 |
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I met a fellow through my immunologist about 15 yrs. ago that claimed he got better. He had severe chemical sensitivities like me, and thought the cause was from farming chemicals that he was not too cautious about handling. The minute he got around perfume or other petrochemicals he would fall on the floor into convulsion type reactions.
He was lucky enough to sell his farm and move to a forested area where farming/spraying etc. was at a minimum. He built this "special" home that had no out gassing products whatsoever. I remember him telling me that he even went as far as going to the cement company and washing out the cement trucks himself as they contained chemical entrainments etc. with normal cement. He ordered the cement with nothing added apparently. Ceramic tile, aluminum sheeting on the ceiling, brick walls,insulation on the outside of the home.
He claimed he began to feel better almost immediately as his immune system would receive a much needed brake that he could not get in a normal house full of off gassing furniture etc.Like me, he spent nights in a tent previous to this until winter came and he no longer could live in a tent...like me. At one point, my sickest, I would get near a wall plug in receptical or gasoline and my mouth gums would bleed and fill my mouth with blood. I used to be able to suck on my gums and pull blood out at any time also. Yet after many dental visits nothing could be found.
He also claims he began to see a natropathic person and was given herbs etc to detox.He grew a garden without chemicals. He stated that one day he needed to go to the washroom to empty his bowels and what came out was this long black stool that he claims stunk up his complete home. He also claims his health returned soon after this as if " a light switch had been turned back on". His words ..not mine.
He offered for me to stay in this home but this was after he had added things back into it like drywall,paint, etc. Is it any wonder we are all being called nuts.
you all might find it interesting to note that i still, to this day, go uphill when i go outside of my home or to a new environment...just not as severe as before as my immune system now is more than exhaused 20 years later. Could this be xmrv. Or does xmrv surface or come alive only when the immune system does not funtion normally.
You all might also find it interesting that my initial flu like illness started in 1981 while taking mice out of traps. Lots of mice i might add. I was living in a motel and in late Oct. i was trapping many mice as the motel was sittuated on a hyway with nothing but farming fields all around. I guess the mice needed a warm place to play.Anyway my life has been a living hell ever since...then to be told by the CDC that we were all sexually mollested...ahahhaaahhahaah! LOL
Last edited on Thu Nov 5th, 2009 19:23 by roonie
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pre MP/lyme disease diognosed clinically in 2005.vommetting/diahrea back in 1981.Jaw pain/fuzzy headed feeling with ulcer soon after.chemical overexposure triggered immune system into hyper state with hundreds of symtoms.litterally!now exhuasted
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eClaire
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Posted: Sat Nov 7th, 2009 16:28 |
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Dr. Marshall,
I'd like to know what you think of the suppositions contained in this brief article about XMRV and the immune system.
http://chronicfatigue.about.com/b/2009/11/05/xmrv-updated-mechanism-theory-of-chronic-fatigue-syndrome.htm?nl=1
I believe you think the research having to do with AIDS is half right--that is, controlling the virus. (The missing half, of course, is taken care of the bacterial growth, etc.)
Do you think XMRV may need to be controlled as well in a similar fashion?
I ask this in light of the other research I read where folk with CFS are said to have 30-50 active viruses. (Mentioned elsewhere on the site.)
Thanks, Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Dr Trevor Marshall
Research Team
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Posted: Sat Nov 7th, 2009 16:57 |
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Claire,
I would love to help you, but just now I am way behind in all the things I have to do, and there is no way I could work through that article. Sorry.
..Trevor..
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Joyful
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Posted: Sat Nov 7th, 2009 22:40 |
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Claire,
I've been looking at this with Dr. Marshall's Prague presentations in the back of my mind. Especially the point that many of these persistent infections down-regulate the VDR.
I think I'm remembering that only 0.4% of any given population end up chronically ill from these kinds of infections. That means that there is another factor determining who shakes off these infections and who goes "chronic".
That factor has been proposed to be a synergistic community of pathogens already present in the body. Something that has already suppressed the innate immune system via down-regulation of the VDR.
I think this means that the XMRV is particularly nasty, but not necessarily the true source of an individual's tendency towards chronic disease.
Of course, if you have a nasty virus, and you receive effective treatment for it, you may find some amazing relief from your symptoms. But it seems to me that without treating the underlying Th1 disease you will be vulnerable to a spectacular relapse in the future.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful
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Posted: Mon Nov 9th, 2009 21:26 |
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This news video has a short interview of the lead investigator for the XMRV research and Ann Whittemore... http://nevadanewsmakers.com/video/default.asp?showID=938
Move the time scroll to about 9 minutes in to get straight to the most significant information.
Highlights:- The known substances that trigger replication of the XMRV: cortisol (stress), nuclear factor kappa B, androgens and progesterones.
- It is harbored in B and T cells; therefore any challenge to the immune system that replicates these cells will proliferate the virus in the body (i.e., acute infections, vaccines).
- A yet unpublished study of samples from autistic patients found XMRV present.
"Commonality of an immune system defect in patients with CFS and prostate cancer led researchers to look for the virus in their blood samples." ... "Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS." (National Cancer Institute press release)
From XMRV in the Spotlight:
XMRV and ME/CFS - How to explain the high apparent rate of infection in the ME/CFS patients but not the healthy controls? Dr. Coffin thought of three main possibilities; - the patients happened to live in areas where outbreaks of this virus had occurred
- they had an immune system defect that left them particularly vulnerable to the virus
- the virus actually infects everybody but is just easier to find (is more active) in people chronic fatigue syndrome (the opportunistic virus theory).
Note point #2. In Th1 disease states the pathogens are most likely causing the types of defects in the immune system that would allow a retrovirus to persist.
This is important because it means that this new retrovirus discovery does not fundamentally change the basis for using the MP to address ME/CFS.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Dr Trevor Marshall
Research Team
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Posted: Tue Nov 10th, 2009 04:30 |
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Joyful, do you really believe what Ann asserted about XMRV is scientifically accurate?
If so, I have a bridge you might want to buy
I am very angry at the irresponsible way the principals in this saga have behaved. IMO they have ensured that the CFS community will endure another decade of suffering, before any energy is expended on research likely to lead to real solutions.
Last edited on Tue Nov 10th, 2009 04:40 by Dr Trevor Marshall
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Joyful
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Posted: Tue Nov 10th, 2009 08:40 |
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No, the assertions I reported are simply talking points to me. The WPI lead researcher, Judy Mikovits, Ph.D., among other things, shared the three points I listed.
I know that others on the MP are watching this news with interest and that it could make for confusion if the new information isn't contextualized, so I posted what is being said in order to attempt to help do that.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Dr Trevor Marshall
Research Team
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Posted: Tue Nov 10th, 2009 15:16 |
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marysue
Moderator
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Posted: Wed Nov 11th, 2009 06:51 |
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Dear all,
Thanks for the discussion and input. As a long-time "PWC" (person with CFIDS/CFS), I was also disappointed by this new line of interest. And Trevor's comment is so true. IMO they have ensured that the CFS community will endure another decade of suffering.... Unfortunately, this statement is true of many other diseases as well.
I became disillusioned with the CFS research community many years ago because it was clear that everyone was focused on a one-source cause. Even with my limited knowledge back then, it made no sense to me given the widespread mulit-system disfunction going on in my body.
When I found the MP research, of course I (rediculously) thought that surely they must be talking about the MP in the CFS community! Especially with the study that showed 48/50 CFS patients had unambiguously high 1,25-D levels. If they were including the MP research and info in their community, at least PWCs would have a choice for treatment and be able to include it as part of their education and decision making.
Because of the level of severe daytime fatigue and sleeplessness associated with CFS (both symptoms of hypervitaminosis-D), I believe that CFS is an advanced stage of VDR dysregulation and patients with this diagnosis are not likely to ever get well without a VDR agonist as used in the MP.
I do hope that the new CFIDS director will show some interest in having Tevor present at one of the conferences. I'll continue to hope that there are some researches out there who will be interested. And, I did speak to an MD/PhD CFS researcher who told me that although they didn't recommend that I do the MP, they said, "Dr. Marshall is a real smart guy and I look forward to seeing more of his work."
Marysue
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eClaire
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Posted: Wed Nov 11th, 2009 17:07 |
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Well said Joyful and Marysue. I am with you on this topic (and not believing that a single virus alone could account for the multisystem dysfunction... only the science behind the MP has made sense in this regard to me), and I was looking to see some cogent remarks from people whose cognitive abilities are working better than mine.
I am also not anti-virus research, as some viruses can have a profound impact on the body and may need to be accounted for in addition to the science behind the MP. At least I hold that open as a possibility. At any rate, I do think this may well end up being a very costly diversion.
Claire
Last edited on Wed Nov 11th, 2009 17:08 by eClaire
____________________
34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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eClaire
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Posted: Wed Nov 11th, 2009 21:57 |
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http://www.youtube.com/watch?v=ACc53FgHPuY
Correct me if I am wrong, but at 4.21 min the speaker seems to say that in Europe this virus is not showing up in the CFS patient group. Does obfuscation of that point follow? (Or just brain fog on my part?)
Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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