• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

2012 Autoimmune conf linking VDR to EBV/CMV

Messages
41
Location
California
I haven't had a chance to look at the video, but I did Google the subject and found an interesting abstract: http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf

I only read the first of the eleven pages in this abstract, but this involves bacteria instead of EBV interfering with VDR and thus vitamin D function. It doesn't sound good either way! Does the video from the 2012 autoimmune conference discuss whether mutations in VDR play a role in the EBV infections?
 
Messages
57
I haven't had a chance to look at the video, but I did Google the subject and found an interesting abstract: http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf

I only read the first of the eleven pages in this abstract, but this involves bacteria instead of EBV interfering with VDR and thus vitamin D function. It doesn't sound good either way! Does the video from the 2012 autoimmune conference discuss whether mutations in VDR play a role in the EBV infections?

That was my take on it, but I was hoping to get more insight from the "wise ones" here. It is an interesting hypothesis none the less.

Dfox
 

snowathlete

Senior Member
Messages
5,374
Location
UK
i havent read the paper or watched the video but i think it is really interesting, especially as i know i have one of two VDR mutations (23andme test one) and the other is being tested by De Meirleir. I also got some tests back and i have low vit d. So, maybe there is something in that.
 

Symptomatic

Senior Member
Messages
197
I haven't had a chance to look at the video, but I did Google the subject and found an interesting abstract: http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf

I only read the first of the eleven pages in this abstract, but this involves bacteria instead of EBV interfering with VDR and thus vitamin D function. It doesn't sound good either way! Does the video from the 2012 autoimmune conference discuss whether mutations in VDR play a role in the EBV infections?

Just FYI, Autoimmunity Research Foundation is Marshall/Marshall Protocol, which folks seem to have very polarized feelings about. Do some Googling, and some searching on the PR site and you will find plenty of info, including pieces of my story and my opinion/experiences.
 
Messages
57
Just FYI, Autoimmunity Research Foundation is Marshall/Marshall Protocol, which folks seem to have very polarized feelings about. Do some Googling, and some searching on the PR site and you will find plenty of info, including pieces of my story and my opinion/experiences.
I did not realize this was "The Dr Marshall" of the Marshall protocol, however I find it still interesting about the VDR gene. I also find it interesting about the 3D microscopic imaging of the DNA. I will look at what you have posted.

Thanks, Dfox
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I looked at that conference when the videos were released. It's not really an "autoimmune conference" as the only speakers were Marshall Protocol ones.
 
Messages
57
Just FYI, Autoimmunity Research Foundation is Marshall/Marshall Protocol, which folks seem to have very polarized feelings about. Do some Googling, and some searching on the PR site and you will find plenty of info, including pieces of my story and my opinion/experiences.
Thanks Symptomatic, I read quite a few of the threads, and WOW. One of the doctors I have consulted wants me to do a modified MP, but my blood pressure is already VERY low without Benicar. He wants me to take just Minocycline just once a week. Although I have been dxd with Lymes, Mycoplasma, EBV etc, I have been reluctant to try it
.
I will look at my 1,25D level, but where do I start on all of the other tests you are talking about. The hypercalcemia, and the other issues could be a problem for me. I just recently sent off a test to Genova for the TH1/TH2, and a 24 hour cortisol. I also did a Fry test, but I am not sure of the legitimacy of this test.

Where on earth do you find a doctor who has the intelligence to look at all of this? Mine here is the absent minded professor.

I do have a snp on the VDR taq gene, and still see a possible link here with the MP. By the way there is a homeopathic center here in town that treats all of the above issues with homeopathy. I talked to one of their previous clients who is totally well now, who did their protocol for Lymes, and was well after one year, and she even reversed her osteoporosis. She still has a "heart" defect caused by the Lymes, but is VERY active, and has her life back. It is hard for me to believe this stuff works, even after talking to this lady. BTW, they gave her homeopathics to take if the "detox" symptoms got too bad.

I would be interested in your progress now, and perhaps any doctors or easy to digest research.

Thanks, Debbie
 

Symptomatic

Senior Member
Messages
197
Where on earth do you find a doctor who has the intelligence to look at all of this? Mine here is the absent minded professor.

I was very, very lucky. I came into this whole thing via hypercalcemia, thinking I had hyperparathyroidism. I saw my GP and two endocrinologists (and consulted with a parathyroid surgeon in Tampa), none of whom were particularly helpful.

Ironically, when I decided I wanted to try Benicar, to see if it did/didn't help my high 1,25D, I asked both the Marshall folks and the CIR (Chronic Illness Recovery; they are nurses who started out with Marshall and are now on their own) for their doctors lists, and found mine there. My doctor is great in that he is integrative, and doesn't buy into any one protocol. He takes bits and pieces from everywhere, and applies them to his patients as appropriate.

Of the 92 VDR SNP tested by 23andMe, I am hetero for 25 (including Taq, Bsm and Apa) - figure that can't be good in anyone's book.

Feel free to PM me and I'll be happy to give you any details you'd like.