Jackiemature wrote:Dr. Paul Cheney notes that Vit D may be toxic to people with CFS. Patients typically show low levels of Vit D in testing and he theorizes it's because the body is trying to get rid of it. I know I feel more sick during the summer and have to limit my time in the sun to 10-15 mins every 2 hrs or I start feeling faint and nauseous. I had one doctor put me on 10,000 IUs a day and when the month of May came, I thought I was going to die! I quit taking the Vit D and feel so much better although sun exposure is still a problem. I'll start taking a low dose in the fall when the sun in lower in the sky but not the 10,000IUs a day prescribed. I was a big Vit D fan until I discovered it was the Vit D causing a lot of my symptoms. Folks might want to do some more research on this one.
Unfortunately, what works for everyone else, doesn't always work for us.
I think this doctor is onto something. I had a bad experience with Vit D where I thought I might drop dead. When I told my doc he sent me of to a specialist to see if I had perathyroid dis ease I guess I didn't as all the specialist wanted to do was treat my low vit d. She did a 24hr urine blood work then put me on 400mg of vit D a day for a month. After 2-3 days I could not sleep felt wonky in my thinking had anxiety was grouchy beyond words. I had to go off the Vit D to get some sleep. I tried to call the specialist but her office was never open she was gone on vaction so I suffered thru the month did a few days on went off to sleep till the month was over. At the end of the month I was to have another 24hr urine and more blood work so the last 7 days I stuck to the vitD even tho it made me a mess and had the urine and blood work done.
After all of that suffering that entire month my vit D level at the end of the month was the lowest it had ever been. Lower than the original test done by my gp lower than the first test the specialist did?????
Her very unsatisfactory answer was I was not taking A HIGH ENOUGH DOSE OF VIT D what a load of crap. My first impression on reading the test results was that my body was dumping vit D as it did not like it and I certainly did not like the effects of taking vitD3.
This lead me to a couple of places the parathyroid page by a certain doctor whos name I can't recall who say many people have a tumour on their parathyroid that is undiagnosed and most doctors miss it... jury is out on him I can't afford to go see him in the states he is easy to find online if you look up parathyroid tumours and vit D
the second place this search took me was to the Marshal Protocol which is an entire treatment of disease based on lowering vit D so that the immune system can be healed.... he can be found online by typing in his name trevor marshal.
I am not a firm believer in this either but he is running a test thru other doctors to see if this heals cf ms and host of other disorders... which I can't remember just now.
I am waiting as to see how this works on other people. The idea as I understand it is that the vitamin d recptor has been tricked by a host of viruses into shutting down that is how they get into the body. By lowering the Vit D here I get foggy on the idea ...sorry but think it has something to do with getting the recptors back online to do this you have to lower vitD .
Once the receptors get working again they will kill the viruses and other bacteria... partly by killing it themselves and partly by taking very low doses of antibiotics
Once the receptors are working again your immune system becomes a killing machine and kicks ass all over the place this makes you feel sick as now you are at war but once it is done you are finally well.... I was trying to watch his site for awhile but my computer broke and I FORGOT about it till I read this. It is not unusual for me to forget things part of cf I believe.
He has a forum where people with cf and other disorders are posting about their experience. Again what costs the money always money bah is the pills to lower the vit D level... while I may not be much cash for many people I really have no money to speak of with having cf for 20+ years my earning power is zip.
So that is my take on the vitD issue not good I will never take no matter how may website and doctors boast of it's fabulous effects. If your vit D is low and taking is making you sick maybe one of the two ideas above applies. We are not going to get anyplace by following doctors that do not want to hear us. If you doctor listens maybe he would have some ideas on the above two ideas.
by Ian » Tue May 11, 2010 4:24 pm 
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