Anyone tried high-dose Vitamin D?
 

I know that several of us have found that our vitamin D is low and I wondered how aggressively you had dealt with it. I have read reports of single intramuscular injections as high as 600,000 IU! Considering that the RDA was until recently just 400 iU, that's a heck of a jump but they report no side effects.

I'll post more later, but it seems that Vit D dramaticly ramps up GDNF in the brain - as much as 18X. It gets past the BBB but only about five percent of serum level. Thus my interest.

kidney stones +Vit D
 

FYI: husband took 50, 000IU orally once a week X's 2 and developed kidney stones. coincidence? was reassurred there was no association, though I remember problems with calcium metabolism (and thus precipitation of same resulting in stones) associated with Vit D therapy. Perhaps if one stays well hydrated? again, may have been a coincidence, though husband had never had kidney stones before and has not suffered with them since. He now takes 2000 IU/day.


http://www.parkhurstexchange.com/nephrology/2010-01-09

"...Vitamin D intoxication by increasing calcium absorption is known to cause and increase risk of calcium based kidney stones. It's unclear, however, to what extent physiologic doses of vitamin D alone increases this risk, as it's often given along with calcium to preserve bone health..."

Fiddlesticks!
 

Rick
I cannot for the life of me find my Vitamin D bottle where I have been treated with high dosages for deficiency. I believe at last count I had been given therapeutic supplements 4 times and it was STILL low!

I know that I need to get on top of that, but this dystonia/dyskinesia or whatever it is takes precedence.

I pulled this off of rxlist.com

The recommended intake of vitamin D is 400 IU-800 IU daily. FOSAMAX PLUS D 70 mg/2800 IU and 70 mg/5600 IU are intended to provide seven days' worth of 400 and 800 IU daily vitamin D in a single, once-weekly dose, respectively.

This is, of course, on the flyer for Fosamax treatment, a drug used for osteoporesis (which many postmenopausal women have).

I may be dreaming, but I thought my supplements were 60,000 units WEEKLY. I had to take 1 pill for 6 days, then for retesting. I'm not sure why so long to recheck, unless maybe you get a false positive or something. The absorption must be incredibly slow.

While on this topic, I find it just plain asinine that in the U.S. pet food is regulated by t he FDA, but not supplements. No wonder we're all half dewad or have one foot in the grave (while Fido or kitty is thriving). Don't get me wrong, I love animals.
Peggy

Mine are Vitamin D3 2400 iu softgels, urged on me by a friend with MS. I am useless at taking things like this, being consistent with it. The label says they are 600% RDA, and the D3 comes as cholecalciferol. I have not noticed any difference from taking it, but put this down to my inconsistency, and also think these kinds of supplements are preventative, and therefore may not show results directly.

The mega mega like 600,000IU doses are still very controversial, but we had one poster here a while back who could not absorb things orally and did have some IV supplements done.

The D you get on RX is D2 and not really very active.

In short, the rule being offered by the experts is 1000 IU of D3 for every 10ng you want to raise from your test results.

more here:
http://www.vitamindcouncil.org/

I tested very low and take 2000 IU of D3 daily.

If you were very low.... what was your number?

Add twenty to it, and you have an approximate level today.

Minimum recommended today is 50ng/ml. Optimum is 50-80 or 50-60 depending on which expert you read.

anything below 50 is sub optimum and not working for you well.

Join an open arm study
 

Thanks, Mrs. D. I have been wondering where to go with my D levels- I am in the "insufficiency" range, but I could tell that my doctor was cllueless when I asked how much I supplement. This really helps us take charge.

There is also a great web resource on Vitamin D and the grass roots campaign on getting people to get their levels up to where they need to be. They have an interesting chart on where your "D" levels should be at to ward off many forms of cancer and diabetes. The site is Grass Rootshttp://www.grassrootshealth.net/ They even have a program we can enroll in and get tested twice a year. From the website:

GrassrootsHealth has launched a worldwide public health campaign to solve the vitamin D deficiency epidemic in a year through a focus on testing and education with all individuals spreading the word.

Everyone is invited to join in this campaign! Join D*action and test two times per year during a 5 year program to demonstrate the public health impact of this nutrient.

-Laura

Oh yeah
 

Quoting myself on 05-26-2010:
Mrs. D: my number was 17.

Gotta go, but will check back later.

Jaye

My Urologist found my vitamin D deficeincy through blood work

My number was 5

I was put on 2000 mg daily, and the number jumped up to 16

He changed it to 4,000 mgs daily, and my number is still 16

I was then put on 4000 mgs daily, plus 50,000 units per week

I am scheduled for blood work agian this week

thanks steve and Jaye!
 

I didn't want to answer mrs. D 's question because i thought it was so low that I might have heard my doctor wrong. Mine was a whopping 7.

Well,the low readings here are not unusual to NeuroTalk. In fact the websites (both grassrootshealth and Vitamin D council) both have statistics to show many people in US and elsewhere are very low.

One thing to consider if you decide to do high dose Vit D3 (more than 2000IU daily) is not to take alot of calcium. One cardiologist has a blog, and he is recommending not to go over 600mg a day of calcium in supplement form. In fact I don't take any!
Vit D increases calcium absorption from food, and it is possible with a good diet to no longer need high dose calcium in supplement form while on high dose Vit D 3 supplementation.

Both my husband and I take 5000IU daily from Sept, to July. Once we are outside in the sun more, I stop ours. It has made a huge difference for both of us as far as mental and physical stamina, and neither of us gets colds or sick anymore too.

It is recommended for patients with sarcoidosis to not take supplements of D without a doctor's supervision. This is because the research into this uncommon condition of inflammation is not well founded with Vit D issues. The Marshall Protocol and all that. (you can Google it if you haven't heard of it but I bet most of you have! ;)

Vit D boosts meds?
 

Upped my dosage to 5000 IU yesterday and took part of it at the same time as meds. Seemed like they worked much better. Did it a little more deliberately today and it was not my imagination. Has anyone else noticed a similar effect?

I noticed it too
 

Rick,

Now that you mention it, I have had an incredibly smooth day with meds. They nearly always work but today I didn't have much of a wearing off sensation. I am at 4000 IU and my Vita D is at 13.

-Laura

I havent noticed a bit of difference

by the way...
 

Vitamin D Levels Associated with Parkinson's Disease Risk
http://www.sciencedaily.com/releases...0712162624.htm

Over 65s Should Take High Dose Vitamin D to Prevent Falls, Say Researchers
http://www.sciencedaily.com/releases...1001191659.htm

Rick, I find that when I get one of those shaky "spells" such as you and Laura describe, it's because I haven't been taking my D3. When I'm in that zombie state, the D3 helps within a couple of hours.

Jaye

Urology and Vit. D
 

Hmmm?? do you know if UTI's and some urology problems are connected to Vit. D deficiency?

Hey, Jaye - I hope you are feeling better after that hospital stay. :)
Peg

OT
 

Much better, thanks, Peg. Wish I'd been more faithful to the D3. Kidney infections, though not terribly painful when caught early, are no fun. The hospital was totally cool about my PD meds, btw.

And a Happy Birthday to you, my dear.

Jaye

1. Brain Res Mol Brain Res. 1994 Jul;24(1-4):70-6.

1,25-dihydroxyvitamin D3 regulates the synthesis of nerve growth factor in
primary cultures of glial cells.

Neveu I, Naveilhan P, Jehan F, Baudet C, Wion D, De Luca HF, Brachet P.

Institut National de la Santé et de la Recherche Médicale, Unité U.298, Centre
Hospitalier Régional et Universitaire, Angers, France.

The effect of 1,25-dihydroxyvitamin D3 (1,25-(OH)2 D3) on nerve growth factor
(NGF) synthesis was investigated in primary cultures of astrocytes prepared from
brain of neonatal rats. 1,25-(OH)2 D3 elicited a dose-dependent increase of NGF
mRNA with a maximal effect at 10(-7) M, which persisted for at least 48 h.
Northern blot analysis revealed an expression of the vitamin D3 receptor (VDR)
gene in primary glial cells. Treatment of cells with 1,25-(OH)2 D3 led to an
increase in the VDR mRNA levels. Similar results were obtained in C6 glioma
cells. Exposure of primary glial cells to 10(-8) M 1,25-(OH)2 D3 caused only a
2-fold increase of the levels of cell-secreted NGF after 3 days of treatment.
However, a 5-fold increase was observed three days after a second addition of
vitamin D3. Likewise, a pretreatment with lower doses of hormone such as 10(-10)
M or 10(-9) M enhanced the responsiveness of the cells to a 24 h treatment with
10(-8) M hormone. It appears, therefore, that the duration of the treatment
influences the level of synthesis of NGF, possibly as a consequence of the
increase of the VDR gene expression. The specificity of 1,25-(OH)2 D3 is
supported by the fact that a concentration of 10(-7) M of an another vitamin D3
metabolite, 24,25-(OH)2 D3, had no effect on NGF synthesis. Several lines of
evidence indicate that astrocytes constitute the major cell type responsive to
1,25-(OH)2 D3 in primary cultures of glial cells.(ABSTRACT TRUNCATED AT 250
WORDS)


PMID: 7968379 [PubMed - indexed for MEDLINE]

------
1. Neuroreport. 1996 Sep 2;7(13):2171-5.

1,25-Dihydroxyvitamin D3, an inducer of glial cell line-derived neurotrophic
factor.

Naveilhan P, Neveu I, Wion D, Brachet P.

Institut National de la Santé et la Recherche Médicale, Centre Hospitalier
Universitaire, Angers, France.

Glial cell line-derived neurotrophic factor (GDNF) has significant therapeutic
potentials, in particular for neurodegenerative disorders. To determine factors
that would enhance GDNF expression, we analysed the effect of 1,25-(OH)2 D3 in C6
glioma cells. Treatment of C6 cells with 10(-7) M, 1,25-(OH)2 D3 for 48 h
elicited an 18.5-fold increase in the level of GDNF mRNA. In addition, our
results indicate that 1,25-(OH)2 D3 is effective at concentrations as low as
10(-10) M and that retinoic acid has additive effects. These data indicate that
1,25-(OH)2 D3 is a potent inducer of GDNF expression and suggest that 1,25-(OH)2
D3 may contribute to the regulation of GDNF in vivo.


PMID: 8930983 [PubMed - indexed for MEDLINE]

----


1. Brain Res Mol Brain Res. 2002 Dec;108(1-2):143-6.

1,25-Dihydroxyvitamin D(3) increases striatal GDNF mRNA and protein expression in
adult rats.

Sanchez B, Lopez-Martin E, Segura C, Labandeira-Garcia JL, Perez-Fernandez R.

Department of Physiology, School of Medicine, University of Santiago de
Compostela, Spain.

Glial cell line-derived neurotrophic factor (GDNF) has been postulated as a
possible candidate for therapeutic treatment in Parkinson's disease (PD). Recent
in vitro data suggest that 1,25-dihydroxyvitamin D3 [1,25(OH)(2)D(3)] treatment
may enhance GDNF mRNA expression. In the present study, using semiquantitative
RT-PCR and Western blot, we have shown that 1,25(OH)(2)D(3) administration
intraperitoneally, significantly increases GDNF mRNA and protein levels in the
striatum of adult rats.


PMID: 12480187 [PubMed - indexed for MEDLINE]

-----


1. J Neurosci Res. 2009 Feb 15;87(3):723-32.

1,25-Dihydroxyvitamin D3 administration to 6-hydroxydopamine-lesioned rats
increases glial cell line-derived neurotrophic factor and partially restores
tyrosine hydroxylase expression in substantia nigra and striatum.

Sanchez B, Relova JL, Gallego R, Ben-Batalla I, Perez-Fernandez R.

Department of Physiology, School of Medicine, University of Santiago de
Compostela, Santiago de Compostela, Spain.

It has previously been demonstrated that 1,25-dihydroxyvitamin D(3)
[1,25(OH)(2)D(3)] administration, whether in cell cultures or in vivo to rats,
increases glial cell line-derived neurotrophic factor (GDNF) expression levels,
suggesting that this hormone may have beneficial effects in neurodegenerative
disorders. This study was carried out to explore the effects of 1,25(OH)(2)D(3)
administration in a 6-OHDA-lesioned rat model of Parkinson's disease on GDNF and
tyrosine hydroxylase (TH) expression in substantia nigra (SN) and striatum. Two
groups of animals received 1,25(OH)(2)D(3) intraperitoneally, the first group 7
days before the unilateral injection of 6-OHDA into the medial forebrain bundle
(MFB) and the second group 21 days (days 21-28) after the unilateral injection of
6-OHDA. Animals of both groups were sacrificed on day 28. In addition, two other
groups received a unilateral injection of either saline or 6-OHDA into the MFB.
Rats were killed, and the SN and striatum were then removed for GDNF and TH
determination. Striatal GDNF protein expression was increased on the ipsilateral
with respect to the contralateral side after 6-OHDA injection alone as well as in
1,25(OH)(2)D(3)-treated rats before or after 6-OHDA administration. As expected,
6-OHDA injection induced an ipsilateral decrease in TH-immunopositive neuronal
cell bodies and axonal terminals in the SN and striatum. However, treatment with
1,25(OH)(2)D(3) before and after 6-OHDA injection partially restored TH
expression in SN. These data suggest that 1,25(OH)(2)D(3) may help to prevent
dopaminergic neuron damage.


PMID: 18816795 [PubMed - indexed for MEDLINE]

Kind of a clumsy transition from the neurotrophic factors thread....
 

...but whatcha' gonna' do? :D

I think there is something big here and it is staring us in the face. The studies that I just posted are about all there are relating to the relationship between Vit D and GDNF. They all point to a major role. Other studies, including Amgen's notorius work, have made it clear that GDNF is capable of magic if it is in the right place. The studies above indicate a role for Vit D in getting it to that place.

Almost overnight the medical community has gone from saying that 400 IU of Vit D is all we need to saying that some of us may need 1000x that. This tells me that everything needs to be re-examined. The potential here is huge. If a chronic deficiency of Vit D is blocking the natural production of GDNF and the ability to heal ourselves, I want to know.

A lot of PWP have found that they have low Vit D. Have you heard of any of us who reported high levels? Me neither. As Paula mentioned, the general result of GDNF studies has been mixed. But Vit D levels were not considered.

I am going to post an assortment of files for consideration.

In order to keep this readable I am going to use the PubMed ID for citation purposes:

18852350: " RESULTS: Significantly more patients with PD (55%) had insufficient vitamin D than did controls (36%) or patients with AD
(41%"

20625085 : "CONCLUSIONS: The
results are consistent with the suggestion that high vitamin D status provides protection against Parkinson disease."

9371907 : "High prevalence of vitamin D deficiency and reduced bone mass in Parkinson's disease."

20586743 : "Hypovitaminosis D is also associated with several other neurological diseases
that is less likely mediated by dysregulated immune responses, including
Parkinson's disease and Alzheimer's disease, schizophrenia and affective
disorders, suggesting a more diverse role for vitamin D in the maintenance of
brain health. Accordingly, both the vitamin D receptor and the enzymes necessary
to synthesize bioactive 1,25-dihydroxyvitamin D are expressed in the brain, and
hypovitaminosis D is associated with abnormal development and function of the
brain."

17935548 : "CONCLUSION: Vitamin D therapy with conventional treatment improves serum levels
of 25 hydroxy vitamin D but still leaves some patients with significant insufficiency and therefore the same dose of vitamin D is not appropriate for all."

3838342 : "The present studies measure the transport of retinol, retinoic acid,
1,25-dihydroxyvitamin D3 [1,25-(OH)2D3], and 25-hydroxyvitamin D3 [25-(OH)D3]
through the rat brain capillary endothelial wall, i.e., the blood-brain barrier
(BBB). The vitamin A and D derivatives bind both to albumin and to specific
high-affinity binding proteins in plasma. In the presence of physiologic
concentrations of plasma proteins, the extraction by brain of all four compounds
was 5% or less."

------

The last indicates that although the quantities are small, oral vitamin D can make its way to the brain. That is not likely to be an accident. If not, then what is being "starved" by these low levels?

sunbathe as well
 

Keeping in mind that sunlight on the skin, absent any sunscreen of course, will use cholesterol in the body to make D3....interesting connection is that I have read many places PWP have low cholesterol. Can they not make enough D3 of their own, because they don't have enough cholesterol to make it, assuming they get out in the sun enough? I have not read of many parkies with high cholesterol, but am willing to be educated. Most statistics, if you can call them that, are that PWP have low D3 as well as low cholesterol.

The darker our skin is naturally, and the older we get, the longer exposure we must have to direct sunlight in order to make D3. I don't know how much time in the sun is enough time, but if you sunbathe like my grandma did, who was from "the old country", you'll roll up your sleeves and pant legs and sit in the sun a couple of times a day for 15-20 minutes, longer in the winter for some reason. She lived 30 days shy of 100, without any major disease. She never used sunscreen in her life and believed the sun was healing. Oddly, she never had any issue with skin cancer, either.

If you also take D3 supplements you may not need as much sun, but I would think the D3 we make naturally would be superior to canned D3, assuming the body can make it....a good excuse to eat a fatty steak and fries.:)

full circle?
 

Quote:

Originally Posted by lurkingforacure (Post 718470) Keeping in mind that sunlight on the skin, absent any sunscreen of course, will use cholesterol in the body to make D3....interesting connection is that I have read many places PWP have low cholesterol. Can they not make enough D3 of their own, because they don't have enough cholesterol to make it, assuming they get out in the sun enough? I have not read of many parkies with high cholesterol, but am willing to be educated. Most statistics, if you can call them that, are that PWP ha

Back to the high fat ketogenic diet being neuroprotective...a full circle. This is what the researchers and nutritionists are saying about our brains; it needs lipids to produce cholesterol as the basis of neurogenesis. It is the exact opposite of what has become common belief. that any sort of fat whether meat or dairy, is bad for us because it contributes to cholesterol. Not to mention all the gloomy potential outcomes of spending time in the sun lest we get cancer. In essence, modern medicine has us starving our brains for the sake of preventing a heart attack or skin cancer? How many of us have gone on special diets or worse, drugs, to lower our cholesterol? We have been creating quite a cozy little guest quarters for PD, haven't we?

What really gets me is that there has no push to end the cholesterol hype. Mary Enig was the first to say that this is a cholesterol myth. Dietary fat from animals is not our enemy, trans fats are. Margarine is making us sick, not butter. Still, no one comes forward to put an end to the misinformation.

As for cholesterol, mine was off the charts high when I first presented with a tremor. At the time, I was living in Florida, so I had no lack of Vitamin D. Five years later, I am in Michigan and that Essential Tremor looks a lot more Parkinsonian...btw my cholesterol mysteriously reversed itself. I did nothing to treat it and the high number went away as PD made itself known.

Back to Vitamin D. Rick noted his meds seemed much better with the intake of a D3 supplement. I have slowly made my way up to 8000 IUs daily and today I noted something weird after my lunch time levodopa dosage. It was as if I had taken too much medication. I got this toxic feeling and had numb hands, felt excessively sleepy, and buzzed all at the same time- the only time I feel this way is if I have dosed too close together. It later dawned on me that I took that D3 very close to my levodopa dose...I don't think my reaction was a coincidence. I am going to try this again tomorrow but take half a dose of dopa and see what transpires. As Rick said, the D3 does cross the BBB and does it quickly.

Oh, since increasing the D3, I have actually gotten sleepy and slept like a normal person for the first time in ages, and my mood and energy level is way higher. I am thinking that we can use the Vita D guide that Mrs. D linked for us and how we feel as a way to optimize our levels so that we do not over do it. My doctor left the D3 dosage to me to figure out :eek:

Laura

Like Laura, I have noticed an improvement in my sleep the last few night. Where I was often awake and up at 4:00 AM, this morning I slept in until 7:30 this morning.

maybe, just maybe
 

We have never gotten tested for D3 but are trying the supplements this week.

It would help answer some very basic questions if we could find out how many people that take statins developed PD after they began taking them, yes? Of course, what pharma will fund that effort, since it would mean the demise of a very lucrative drug niche if a link were found. I wonder how we could glean that info. for ourselves....is there any government depository of such type of info., blinded of course as to identifying information, that one could use a freedom of information act request onto find out? This warrants some inquiry.

I don't think so.... You know at PN, we get statin users who developed nerve damage from statins, and it is very hard to find that information documented, except on forums . The Netherlands did a study once and that is on PubMed for PN.

But the hush hush is very big on statins still. There is a new non statin cholesterol drug coming... probably when the patents on Lipitor and Crestor are done. Once that hits --it is from Merck-- the dirt on statins will be released to undercut their sales so the new drug can make billions instead. That seems to be how things are done now with Big Pharma (happened with Paxil for example).

keep in mind
 

Amgen ran their study for, what?, two years? So it is a case of patience needed for any regrowth. However, vit D is powerful stuff and other effectsmay show up sooner.

OK....OK....OK....I am getting my vit.D level checked and stocking up on supplements in anticipation of being deficient. BUT first a nap...after reading all those scientific words.;))

TG

statins and PD
 

Hi Lurkingforacure,
I did petition the govt for all adverse effects reporting done on Lipitor up to 2006, the dates the FDA agency maintained they had "all information together" for public consumption. It took a lawyer writing to them for the information after I applied 3 times to no avail, under the Freedom of infomation Act. Once they received the inquiry from the lawyer, I received the information. the info they sent was hundreds of pages with NO useable categorizing. again the lawyer wrote and demanded the info be sent in specific categories, ie: peripheral neuropathy, cognitive dysfunction, tremors, etc. since the agency has the computer programs to present the info in a useable form. Problem: they were able to get around providing useful info again by utilizing completely different categories for symptoms that should have been listed under one heading: ie: neurological deficit, memory problems, cognitive problems, slowness, possible neuro symptoms, etc etc etc. I am still picking thru the information, thou must admit, my attention and time limits are a factor here in not completing the task at hand.

Dr. Duane Graveline did obtain semi useful info from the reporting body, though his primary interest was the incidence of transient global amnesia (TGA) and statin use, owing to the fact he sufferred 2 episodes of TGA for which he associates Lipitor useage. one may access his info on his web site spacedoc.net.
I also wrote to 23andme and MJF asking for at least an epidemiological study to determine a potential association btn statins and the onset of parkinson's(esp fat soluble ones that cross the blood brain barrier and interrupt the brain's own mavelonate pathway to making brain cholesterol; since fats do not easily cross the BBB, the brain theoretically makes its own cholesterol utilizing the same mavelonate pathway as in the liver). Have also asked 23andme to look into an association among statins, genetic mutations in the SLCO1B1 gene and parkinson's. no response yet from either of these 2 entities.
There is a prospective study proposed by Dr. Xuemi Huang, neurologist in Pa at present, to include 1600 PD patients to determine if statins and PD are positively associated. An ambitious proposed study. She has yet to find funding; imagine my surprise.

As MrsD maintains, no one with the ability to find out this information is interested in doing so, and in fact has a major stake in not uncovering any association btn statins and PD. and perhaps there is none, or as I believe there is an association for those with genetic mutations that result in problems with detoxifying or metabolizing statins. these mutations are not rare, though obviously do not occur in all. I have written to almost everyone on the planet about the potential for statins inducing PD esp for those with SNPs in the gene noted (didn't you receive your copy of my letter? just a small joke and a small exaggeration). I continue my research, though have mostly ceased ranting since most everyone has heard it and is sick to death of it, including myself.

ANd there is contrasting info out there that statins may be beneficial in PD, esp simvastatin. Bet those individuals do not have these SNPs, and also have been on statins less than 5-8 yrs (brain choelsterol has a long half life: theorized to be 5 1/2 yrs, thus any adverse effects from directly lowering brain choesterol via statins would not begin to show up for a much longer period than most drug studies are run. but again, that's my opinion. ) .
Oh yeah, as to Vit D3 (25-OHD), there is some evidence that statins act as an analogue of D3,

( http://www.ncbi.nlm.nih.gov/pubmed/16815382)

since one would expect much lower levels in everyone who takes statins---25-OHD is a steroid that depends upon the cholesterol synthetic pathway for its production. though many studies have shown no decreased levels of Vit D in patients taking statins.
http://www.ncbi.nlm.nih.gov/pubmed/20016680
lurkingforacure, I like having an ally.

and Laura, there is an article about use of ketogenic diet for epilepsy in the NYTimes Sunday magazine which presents a case study of a young male who was experiencing upwards of 300 seizures/day whose seizure rate has been dropped to <10/day from the ketogenic diet. fat for brains, does amazing things. though trying coconut oil was a bust for us; resulted in greatly increased twitching!
whoops: just noticed imark posted the link to the article about ketogenic diets and epilepsy.
madelyn

http://www.sciencedaily.com/releases...0404161832.htm

Dr Xuemei Huang did a preliminary study in 2006 on associatiion of statins and PD. I have not seen any further studies by her since she moved to Hershey, PA. I met her once, a delightful, brilliant woman.

Many years ago, I read a little tid bit on PWP having a low cholesterol count but later could find no mention of it. When I heard about simvistatin and how it is suppose to help for PD, being unaware of the debate, I just asumed that most PWP would not qualify for the drug and tossed that idea on the big heaping pile of "no value", little did I know about the stain and PD link......... ...urgh...I have much to learn. Thank You Olsen for educating me.

TG

CoQ10
 

is also synthsized in the body via the mevalonate pathway. Therefore the drugs which interfere with HMGCoA reductase such as statins would also be expected to decrease its production.

A really stupid question here............
 

....how do you find out the levels of all the vitamins and minerals in your body ?

are there specific blood tests, or do all the tests produce a listing of each element. It seems every time I have another blood test it is for a specific such as high potassium or a high platelet count.
Is it dependent on the boxes ticked by the Doc on the blood test request form ? On my last one a week ago, the nurse appeared to have 6 pages of line item tests relating to different colour containers ( so I assume different tests)

or do you have to request the test for vitamin levels yourself ?

Peter

Either
 

Peter,

It is confusing. In the States, usually our doctors tick off an electrolytes test for minerals like potassium, chloride, etc. As for the Vita D, you may have to suggest it to your doctor if he is not a neurologist that you've learned PWP generally have a deficiency. That's what I did and a few days later had my results. I am not sure of how it works in the UK.

Hope this helps,

Laura

Thanks Laura

I don't suppose anyone can point me to a definite list of what I should get tested ?
I've got myself so confused with all the vitamins / electrolytes / possible supplements, I'm not quite sure which side is up :D

Some tests we have are not good predictors for some nutrients.

Magnesium for example only shows very low or very high with good predictability. The "normal" range is very large and some deficiency may exist within it.

It is thought that measuring serum is less accurate than measuring what is within the cells themselves.
This lab does intracellular measurement:
http://www.spectracell.com/

The "functional medicine" chiropractors do a more comprehensive testing panel, but that is often not covered by insurance.

Some common tests in US have antiquated ranges for normal for B12 and Vit D. The low end of this scale is considered "deficient" by many well informed doctors today. But people are given "normal" verbal results when in the very low end of "normal". So knowing your levels is important here.

IMO people respond to nutrients often irrespective of their tests therefore. Allopathic interpretation of nutrients blood serum testing therefore is not always accurate, or predictive of the patient's response to many nutrients.

I continue to experience improved med response and better sleep. I also have a great improvement in bowel function. Also, problems with prostate swelling have been reduced by half.

I should add that starting about three weeks ago (or about a week before starting D3) I, with my neuro's approval, dropped Requip from my regimen when it proved to be causing my dyskinesia. I had been taking it for ten years and was maxxed out at 24 mg per day, so I expected a bumpy ride. I upped my sinemet to the 1200 to 1400 mg range from the 800 to 1000 range and dropped the Requip to 800 mg the first week and, not having any noticeable problems, zeroed it out in week two. I have experienced no withdrawal symptoms at all that I can tell.

This is totally amazing! The responses here are similar to people on other forums who have different issues!

Wouldn't it be something if this one nutrient impacted many things we consider "chronic"? Who would have thought?

But isn't that exactly what we should be looking for?
 

PD shares something with many modern afflictions.It is idiopathic (origin unknown), widespread both geographically and across class lines, affects widely distributed body systems (seemingly) without rhyme or reason, comes on slowly, and is generally maddening.

It is tempting to blame environmental toxins and other "obvious suspects", but all fail to explain more than a part of the puzzle.

But this hypothesis is subtly different in that it blows right by the question of original cause and addresses the issue as a disruption of the body's ability to repair itself.

In light of that approach, consider the following-
1) PD is first noted in London approximately one lifetime after a large number of people have abandoned a life of working in the sunlight (repair systems working) for one of both Vit D depletion and increased exposure to destructive forces.
2) There is an increase in PD among farmers with the highest rate among the Amish. This would seem to make no sense. However, anyone from a farming background will tell you that you never see a farmer working in the sun without a long sleeved shirt once he is out of his teens. This is because of the factor of protection from irritating substances and because it is cooler.
3) PD is overwhelmingly a white man's disease. It is true that pale skin produces more Vit D than dark skin and paradox rears its head once again - unless dark skin also is a marker for more efficient use of Vit D itself. Do similar racial disparities exist for, say, MS?
4) The lowest rates of PD are nearest the equator and the highest near the poles.
5) One of the studies that I posted bemoaned the variance among individuals and the difficulty in determining the proper dosing with Vit D, so even growing up together doesn't mean a common fate.

And so on....
There is a lot of room in this tent.

I do think skin color is a factor.

Normally darker skinned people, live in more tropical Southern countries. They don't cover up 100%... either.

In the US darker skinned people tend to have rickets risk more.
This is because the more pigment in the skin blocks some UV...but in their country of origin they are typically outside MORE, so that balances out.

In northern latitudes, darker pigmented people need longer sun exposure therefore.

The Amish are highly inbred too...so that if the original members from many decades ago, were inefficient Vit D synthesizers, that trait would be passed eventually to the whole community. The Amish are often quoted as having less autism for the same reasons, to illustrate that autism may be genetic.

But I do think the coming years will be exciting about Vit D.... and we all need to keep in mind that Vit D is NOT a vitamin...and I hope the name converts to D3 or CholeD3 or something like that. The general public and some older medical doctors think...diet/deficiency...and that is not what is happening.

I do think it is exciting... the new research. And in fact it may turn out to be a medical miracle and turning point in our world!
(won't Big Pharma be fit to be tied?)

Wondering....
 

I am wondering, this is entirely tangential, how many of us are affected by Seasonal Affective Disorder? All this talk of light and dark struck me...I have always had a reaction to changes in Daylight Saving Time, but I would say markedly so in years just preceding my first motor symptoms. I went to a doctor's appointment Monday and found myself asking for anti-depressant; this was completely not pre-meditated, and we started talking SAD...which lead us too my vita D level. Anyway, I realized that I am having a particularly difficult time adjusting to the time change, so my doc suggested I invest in light therapy before drugs. That's a first...new I liked her for some reason!

Just wondering if this is just "me" or if anyone else notices they are impacted by the lack of daylight? It might not at all be a Parkinsonian thing, but Mrs. D and Rick always provide good food for thought....

I also wanted to thank you two for exploring this skin color aspect and sunlight aspect... I have had a sneaking suspicion that answers lie in the melanin. We lose a lot of it with PD, and it seems to be a really under-researched aspect of the disease especially in relation to this vita D stuff.

BTW, Happy Thanksgiving to all who celebrate it!

Laura

Yes, I've had SAD for years. I bought a light visor, and it did work well.

Since I started with my D in the higher doses, I've not needed to use it! (there are studies showing improved mood with D therapy)

This is the visor I have:
http://www.feelbrightlight.com/

I used it first thing in the morning for 1/2 hr at the lower setting.
2 yrs...then I started the D.

I tend to slow down in late Sept, after a sunny vacation on the lakeshore and garden. The 5000IU D worked the best starting in Fall. I don't take it in the summer depending on my exposure.
(If it is a cool June, I stop in July. and restart in late Sept, I use my fading tan as an indicator).