interesting. my naturopath has put me on 5000 units vit d3 and after 5 years my disease has progressed only slightly; i'm taking other stuff too though and of course may be just lucky. if it was just the vit d3 it would be fab because its cheap! (and helps with osteoporosis!)
Interesting indeed. I'm also taking Vit D supplements... and almost 2 years after DX my PD has progressed very little (but also impossible to tell if due to the Vit D supplements, or something else, or if it would have happened this way anyway regardless of all the stuff I'm taking).
My experience with Vit D is as follows: 2 years ago I tested for Vit D and found I was deficient. Since then I've been taking 25,000 IU (International Units) every 2 weeks, so an average of 1,800 UI per day. I have now reached a "normal" level of Vit D and continue to take the same doses. I'm trying to get my Vit D tested every 6 months or so. If my tests start showing that I'm way above the normal levels of Vit D, I'll probably reduce my dosage.
In case it might be of interest to someone, note that around 1 year ago I exchanged a couple of e-mails on this with a US researcher that was doing research on the impact of Vit D on PD (Clinical Effects of Vitamin D Repletion in Patients With Parkinson's Disease = VIDIP PILOT). I asked her what kind of Vit D doses she thought appropriate one should take. Her answer was as follows: "We have not yet completed the study [...] For now, based on this study and on other research data (published and unpublished), I would not advise anyone to take “megadoses” of vitamin D – I think further study is warranted. For clinical care the current research published with respect to maintenance of BONE health does support keeping a patient’s 25OH-vitamin D level >30ng/ml; although there are plenty of investigators out there advocating extremely high doses of vitamin D (>5,000 IU /day), I would advise taking such high doses only in the context of clinical trial."
BRs,
lfs
My experience with Vit D is as follows: 2 years ago I tested for Vit D and found I was deficient. Since then I've been taking 25,000 IU (International Units) every 2 weeks, so an average of 1,800 UI per day. I have now reached a "normal" level of Vit D and continue to take the same doses. I'm trying to get my Vit D tested every 6 months or so. If my tests start showing that I'm way above the normal levels of Vit D, I'll probably reduce my dosage.
In case it might be of interest to someone, note that around 1 year ago I exchanged a couple of e-mails on this with a US researcher that was doing research on the impact of Vit D on PD (Clinical Effects of Vitamin D Repletion in Patients With Parkinson's Disease = VIDIP PILOT). I asked her what kind of Vit D doses she thought appropriate one should take. Her answer was as follows: "We have not yet completed the study [...] For now, based on this study and on other research data (published and unpublished), I would not advise anyone to take “megadoses” of vitamin D – I think further study is warranted. For clinical care the current research published with respect to maintenance of BONE health does support keeping a patient’s 25OH-vitamin D level >30ng/ml; although there are plenty of investigators out there advocating extremely high doses of vitamin D (>5,000 IU /day), I would advise taking such high doses only in the context of clinical trial."
BRs,
lfs
Interesting stuff - thanks for posting.
I'm thinking of going for a detailed nutritional analysis and would be interested in hearing other experiences.
EF
I'm thinking of going for a detailed nutritional analysis and would be interested in hearing other experiences.
EF
Hi EF,
I've been seeing a nutricionist since over a year now and am quite happy with him. My experience / advice is as follows:
1. Find out stuff that is out-of-norm with you and try to fix it. In my case, either through lab tests prescribed by my nutricionist or by other doctors, I found out that I had out-of-norm results for the following aspects which I suspect might be linked with PD. I don't know if they really are, but just in case, I would encourage you to try to test them to see if they apply to you too and then discuss with your nutricionist (and/or other doctors) what to do about them. The ones I suspect play a role in my case are as follows:
a. Vit D levels. Mine were low and I'm now taking supplements.
b. Iodine levels. Mine were low and I'm now taking supplements.
c. Inflammation signs. I use the following combination: (i) High-sensitive CRP test, which I understand is the best test for inflammation - my results are higher-than-normal, and (ii) level of ferritin in blood. Note that most doctors think of ferritin just as a measure of how much iron is stored in your body cells. However, ferritin levels also go up with inflammation. In my case, my iron levels are normal, but my ferritin levels are high. The only medical explanation for that is inflammation (so you need to measure both Iron and Ferritin levels to detect inflammation). I asked a couple of doctors how to reduce inflammation. None had any clue. My nutricionist suggested a food complement and 6 months later both my high-sensitive CRP and ferritin levels were lower than before (though not yet on the normal range). I'm quite pleased with the direction it's going, as I suspect inflammation is a key factor behind PD.
d. Unbound Cortisol and Transcortin. I've detected recently that I have too high levels of Transcortin and therefore too low levels of unbound cortisol (they are directly related). I don't know yet what to do about them, but do suspect they play a key role (low cortisol makes you more prone to inflammation and has been shown to be linked to PD), so I would encourage you to seek to measure them as well... and if you find out what to do to "fix" them, pls do let me know :-)
2. Neuroprotective stuff. My neurologist has a list of things he believes are neuroprotective - some are supplements; others are just stuff you should eat (fruit juices, etc, etc). His approach (which I personally agree with) is that you should "overdose" a bit on neuroprotective stuff (at least those that are not harmful, of course).
3. Other stuff. This includes more balanced nutrition, looking after cholesterol, stuff for energy, etc. I confess that initially this was my lowest priority, but I'm more and more convinced that there might be something in here too. After all, if the majority of us didn't get PD from our genes nor due to some exposure to chemicals, the only reasonable explanations that are left are the stuff we eat and things like stress and sleep/rest. I personally didn't make any dramatic changes, but did adapt my nutrition habits a bit, and feel it had a positive impact.
Hope this helps and good luck,
lfs
I've been seeing a nutricionist since over a year now and am quite happy with him. My experience / advice is as follows:
1. Find out stuff that is out-of-norm with you and try to fix it. In my case, either through lab tests prescribed by my nutricionist or by other doctors, I found out that I had out-of-norm results for the following aspects which I suspect might be linked with PD. I don't know if they really are, but just in case, I would encourage you to try to test them to see if they apply to you too and then discuss with your nutricionist (and/or other doctors) what to do about them. The ones I suspect play a role in my case are as follows:
a. Vit D levels. Mine were low and I'm now taking supplements.
b. Iodine levels. Mine were low and I'm now taking supplements.
c. Inflammation signs. I use the following combination: (i) High-sensitive CRP test, which I understand is the best test for inflammation - my results are higher-than-normal, and (ii) level of ferritin in blood. Note that most doctors think of ferritin just as a measure of how much iron is stored in your body cells. However, ferritin levels also go up with inflammation. In my case, my iron levels are normal, but my ferritin levels are high. The only medical explanation for that is inflammation (so you need to measure both Iron and Ferritin levels to detect inflammation). I asked a couple of doctors how to reduce inflammation. None had any clue. My nutricionist suggested a food complement and 6 months later both my high-sensitive CRP and ferritin levels were lower than before (though not yet on the normal range). I'm quite pleased with the direction it's going, as I suspect inflammation is a key factor behind PD.
d. Unbound Cortisol and Transcortin. I've detected recently that I have too high levels of Transcortin and therefore too low levels of unbound cortisol (they are directly related). I don't know yet what to do about them, but do suspect they play a key role (low cortisol makes you more prone to inflammation and has been shown to be linked to PD), so I would encourage you to seek to measure them as well... and if you find out what to do to "fix" them, pls do let me know :-)
2. Neuroprotective stuff. My neurologist has a list of things he believes are neuroprotective - some are supplements; others are just stuff you should eat (fruit juices, etc, etc). His approach (which I personally agree with) is that you should "overdose" a bit on neuroprotective stuff (at least those that are not harmful, of course).
3. Other stuff. This includes more balanced nutrition, looking after cholesterol, stuff for energy, etc. I confess that initially this was my lowest priority, but I'm more and more convinced that there might be something in here too. After all, if the majority of us didn't get PD from our genes nor due to some exposure to chemicals, the only reasonable explanations that are left are the stuff we eat and things like stress and sleep/rest. I personally didn't make any dramatic changes, but did adapt my nutrition habits a bit, and feel it had a positive impact.
Hope this helps and good luck,
lfs
i've a tub of vit d3 - seems worth a few dollars.
vit A is especially dangerous if overdosed and is often found with vit d ie in fish oil.
vit A is especially dangerous if overdosed and is often found with vit d ie in fish oil.
Hi Bartobob,
Thanks for posting!!!!
I find 2 interesting points in it:
1. If I'm reading it correctly, it looks like Vit D does help dalay PD progression regarldess of what DNA type one has. This suggest that anyone with PD and which also has lower-than-normal levels of Vit D should really take Vit D supplements (note that taking supplements when you are at higher-than-normal levels can have nasty long-term consequences, so I'm not going as far as suggest that we "overdose" on vit D supplements or take it when we built our levels above normal levels).
2. I had never heard of this VDR (vitamin D receptor) gene they talk about, but I was realy surprised to see in wikipedia (just google "calcitriol receptor"), that "Glucocorticoids are known to decrease expression of VDR". Cortisol is apparently the most important Glucocorticoid in our bodies and my lab tests show that I'm low on Cortisol! This "Cortisol" thing keeps comming up from multiple PD angles I've been looking at (cortisol apparently also plays a key role in controlling inflammation). I'm starting to suspect it also somehow plays a key role in PD!
Cheers,
lfs
Thanks for posting!!!!
I find 2 interesting points in it:
1. If I'm reading it correctly, it looks like Vit D does help dalay PD progression regarldess of what DNA type one has. This suggest that anyone with PD and which also has lower-than-normal levels of Vit D should really take Vit D supplements (note that taking supplements when you are at higher-than-normal levels can have nasty long-term consequences, so I'm not going as far as suggest that we "overdose" on vit D supplements or take it when we built our levels above normal levels).
2. I had never heard of this VDR (vitamin D receptor) gene they talk about, but I was realy surprised to see in wikipedia (just google "calcitriol receptor"), that "Glucocorticoids are known to decrease expression of VDR". Cortisol is apparently the most important Glucocorticoid in our bodies and my lab tests show that I'm low on Cortisol! This "Cortisol" thing keeps comming up from multiple PD angles I've been looking at (cortisol apparently also plays a key role in controlling inflammation). I'm starting to suspect it also somehow plays a key role in PD!
Cheers,
lfs
i read it as saying it worked for fokl tt and ct but not cc?
how can you find out what fokl you are?
how can you find out what fokl you are?
Hi turnip,
I read it again and think you're indeed right. Somehow I missed that last small sentence. Thanks for noticing it!
Last year I did a genetic analysis at www.23andme.com (it's totally free of charge for PwP - they even pay for the express mail delivery of the saliva samples you need to send them back to the US - and the results are quite instructive - I, discovered, for example that I don't have any of the normal PD-related genes, but I do have a higher-than-average propensity for a few inflammatory diseases linked to the digestive system). They also show you your raw genetic data and I just checked and they do show you your results for your VDR gene... only problem is that they report on some 70 or 80 different SNPs under that VDR gene and for each one they list your 2-letter code (CC, TT, CT, etc) and the letters are different for different SNPs and I don't know which SNP we should be looking at... but I guess that's a problem we might be able to solve... (I'm now going to be out for a week, but when I'm back I'll look more into it).
BRs,
lfs
I read it again and think you're indeed right. Somehow I missed that last small sentence. Thanks for noticing it!
Last year I did a genetic analysis at www.23andme.com (it's totally free of charge for PwP - they even pay for the express mail delivery of the saliva samples you need to send them back to the US - and the results are quite instructive - I, discovered, for example that I don't have any of the normal PD-related genes, but I do have a higher-than-average propensity for a few inflammatory diseases linked to the digestive system). They also show you your raw genetic data and I just checked and they do show you your results for your VDR gene... only problem is that they report on some 70 or 80 different SNPs under that VDR gene and for each one they list your 2-letter code (CC, TT, CT, etc) and the letters are different for different SNPs and I don't know which SNP we should be looking at... but I guess that's a problem we might be able to solve... (I'm now going to be out for a week, but when I'm back I'll look more into it).
BRs,
lfs
Thr fok1 site in the vitamin D receptor is identified here:
http://onlinelibrary.wiley.com/doi/10.1002/mds.24016/abstract;jsessionid=5B75BD3CD50D111E794998A600D8FF30.d01t01?deniedAccessCustomisedMessage=&userIsAuthenticated=false
It is rs10735810
So, if you have CC (ie a C from both parents) here, your PD is mild. If you have a CT or a TT here then vitamin D (1200u/day) will stabilize your PD for at least a year according to the finding of this double blind trial.
I'm off to my 23andme account to see what I've got!
http://onlinelibrary.wiley.com/doi/10.1002/mds.24016/abstract;jsessionid=5B75BD3CD50D111E794998A600D8FF30.d01t01?deniedAccessCustomisedMessage=&userIsAuthenticated=false
It is rs10735810
So, if you have CC (ie a C from both parents) here, your PD is mild. If you have a CT or a TT here then vitamin D (1200u/day) will stabilize your PD for at least a year according to the finding of this double blind trial.
I'm off to my 23andme account to see what I've got!
Looked at my 23andme raw data............that particular SNP is not on their chip!
Seems like a good excuse for holidays in the sun. Interesting that cholesterol is needed to make Vit D and P.w.P are often low in cholesterol.Are there more people with Parkinsons in the areas with less sun? I know that there is more M.S in less sunny areas.
some stats say that the rate of pd in the uk seems to be 1 in 500 and in australia its 1 in 250 or 1 in 350.
but if vit d slows down pd but doesnt prevent it then perhaps the pwp in australia live twice as long after dx so there are more of them! just looking around there seems to be a lot of people with pd in australia.
but if vit d slows down pd but doesnt prevent it then perhaps the pwp in australia live twice as long after dx so there are more of them! just looking around there seems to be a lot of people with pd in australia.
ps the stats might be dubious but it seems reasonabl to conclude sunshine doesnt stop pd from happening .
Sorry to put a damper on holiday fun but please be aware Sinemet (and probably other meds) can make you susceptible to skin cancer.
indeed leyther, having a grandfather die of melanoma (seaman and whaler) and living in one if the very very highest UV rated spots in the world and being scottish, I know i am at high risk , but i feel so much better on a sunny day that i will live (or die!) with the risk.
This study (http://orthomolecular.org/library/jom/1999/articles/1999-v14n03-p128.shtml) while focusing on iodine, does say the following:
"Parkinson’s disease..., are all more common at higher latitudes. Incidence and prevalence rates for Parkinson’s disease in United States’ whites, for example, display a “gradient” with a latitudinal component, with mortality being some 20 percent lower in the southeast than elsewhere in the United States.1 Comparable north to south gradients in the prescription of levodopa, used predominantly to treat Parkinsonism, have been reported from both Spain2 and Sweden.3 This relationship between Parkinson’s disease and latitude was confirmed on a global scale by de Pedro.4".
I presume sunlight exposure varies in an inverse way with the same latitude logic... which could mean that Vit D deficiency is behind this correlation, no?
BRs,
lfs
"Parkinson’s disease..., are all more common at higher latitudes. Incidence and prevalence rates for Parkinson’s disease in United States’ whites, for example, display a “gradient” with a latitudinal component, with mortality being some 20 percent lower in the southeast than elsewhere in the United States.1 Comparable north to south gradients in the prescription of levodopa, used predominantly to treat Parkinsonism, have been reported from both Spain2 and Sweden.3 This relationship between Parkinson’s disease and latitude was confirmed on a global scale by de Pedro.4".
I presume sunlight exposure varies in an inverse way with the same latitude logic... which could mean that Vit D deficiency is behind this correlation, no?
BRs,
lfs
... forgot to add that, especially after this never ending winter in europe, turnip's logic on the merits of sunny Australia seem more convincing than ever 