Parkinson's Disease Tulip


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Old 11-21-2010, 09:39 PM #21
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Default 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.
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Old 11-21-2010, 11:17 PM #22
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Default full circle?


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Originally Posted by lurkingforacure View Post
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
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ve low D3 as well as low cholesterol.

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.
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

Laura
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Old 11-22-2010, 09:26 AM #23
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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.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-22-2010, 11:03 AM #24
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Default 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.
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Old 11-22-2010, 11:48 AM #25
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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).
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Old 11-22-2010, 11:54 AM #26
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Default 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.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 11-22-2010, 04:25 PM #27
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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
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Old 11-22-2010, 07:49 PM #28
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Default 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
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Old 11-22-2010, 09:24 PM #29
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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

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Old 11-23-2010, 12:23 AM #30
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Default 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.
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