Thanks for the summary. Would be great to have some reversal. Thankfully I'm very light skinned anyway. But it is getting worse.
http://www.k-vitamins.com/index.php?page=Kidneyprivate tests for those in the UK
vitamin D http://vitamindtest.org.uk/
Excess vitamin D has been implicated in kidney stones but this may provide some reassurance http://consumer.healthday.com/senior-citizen-information-31/misc-aging-news-10/vitamin-d-supplements-do-not-raise-risk-for-kidney-stones-681155.html However this reseach suggests a problem http://www.ncbi.nlm.nih.gov/pubmed/25623233
Not up to following the science, maybe someone could comment on these mutations and if they are relevant http://www.ncbi.nlm.nih.gov/pubmed/24700880
Personally I try to get my vitamin D in sunlight in the summer. As I feel the cold I sometimes sit outside with bare legs, thick socks and about 3 layers on my top half! A UVB narrowband lamp like these http://www.lighting.philips.com/main/products/special-lighting/phototherapy might be worthwhile but they are a bit pricey.
Interesting... The Doctor from the protocol prescribed Vit K1 and K2http://www.k-vitamins.com/index.php?page=Kidney
Here's some info on the negatives in relation to those mutations. With CKD (chronic kidney disease) there is a problem with conversion of Vit d. It has been found that Vit k can counteract Vit d putting calcium in the veins and arteries and putting it back in the skeleton, where it belongs.
One thing I disagree with this article is it says that CKD can't be reversed. It can. I'm proof. I was in stage 3 and now stage 1. Becoming a vegan helped that. Lots of Vit k.
If you do try, keep us posted about how's it going.Interesting.
Anyone tackle the protocol yet.
May try it next week.
I still have low Vit d levels despite using 10,000 a day. I also have a mutation on my VDR gene that has to do with Vit D. I'm sure that is one of the problems. I hope this summer getting in the sun more will help. But have to be careful cause I have vitiligo and will burn BAD in a very short time. Where there is no pigment, you burn. Low Vit D levels make you feel horrid.Well
I called the Dr. and he was pretty gentle.
He said that Chronic Fatigue and Fibromyalgia have an amazing response with the treatment. Thent he asked "what was the other thing you said? encephayite what?" hehehe
I said Myalgic Encephalomyelitis was kind of the official name for CFS but I was concerned cause nothing untill now proved those diseases to be an autoimmune condition. He said that the Vitamin D isn't just for autoimmune problems, it treats allergies (Which he explained why but I don't really remember), and other immune disturbances too. He then gave me an example of a patient with a serious diseasse which I don't remember the name who got amazingly better in 20 days on the treatment (after being to more than 50 doctors with no help (I said I went to more then 100 haha)).
He said I could get my Vit D levels tested just so we could see if the real deal. I said I already did and it was 19 (22 is the minimum here) (before supplementing when it went to 79 and then dropped fast after I stopped to 30 something, now must be arround 19 again). He said that those levels are clearly pretty low and we should go up to 300-400. He said there's at least 90% of chance that will help me a lot.
I asked if it would be the normal Vit D protocol and he said yes, with some additions like diet stuff (he mentioned cutting of wheat, I don't think it's nothing we don't already know about it) and I didn't want to keep asking too much by the phone, he said I could scheduele an appt when I was near his city ( cause I said I was going there... hehe) and they would find an hour for me.
That was basically it!
If there are any questions left just ask me!
I had FMS diagnosis for some time (my pains started 8 years ago and got slowly worse every year). Untill +-6-7 months ago my main problem was pain (I had insomnia and GI trouble but chicken or the egg)... My CFS diagnosis came just when I got a lot worse and started having brain fog, much much more pain, fatigue, couldn't stomach barely anything.Thanks folk thats great.
do you have cfs currently are how long for??
According to the blood lab that I use, Vitamin D levels greater than 200 is considered TOXIC.(before supplementing when it went to 79 and then dropped fast after I stopped to 30 something, now must be arround 19 again). He said that those levels are clearly pretty low and we should go up to 300-400. He said there's at least 90% of chance that will help me a lot.
Are you using Vitamin D2 or D3? I've heard of several people who never got good results with high doses of D2 but got their blood levels up considerably using much lower doses of D3.I still have low Vit d levels despite using 10,000 a day. I also have a mutation on my VDR gene that has to do with Vit D. I'm sure that is one of the problems. I hope this summer getting in the sun more will help. But have to be careful cause I have vitiligo and will burn BAD in a very short time. Where there is no pigment, you burn. Low Vit D levels make you feel horrid.