Vitamin D Revolution [Kindle Edition]
by Soram Khalsa
Price: $0.91
Recent, groundbreaking medical research has made a connection between Vitamin D deficiency and 17 types of cancers, including breast, colon, and prostate. Illnesses such as influenza, diabetes, multiple sclerosis, and... Read more
This has a theory that we are suffering from use of sunblock and limited access to sufficient sun. This triggers a hibernation mode with storing fat, and other results. Worth a read even though written for the average reader.There are a nuber of substantial papers re Vit D3 which he advocates.
Hikoi
Thank you for the link.
What I am saying is that we should be free to debate all aspects of PD on this forum without outside interests interfering with the debate.
That includes how and why decisions are made on our medication by health care professionals and what impact it has on our health. This includes the way drug companies operate in relation to selling their product.
I would be against blatant advertising or self promotion of a product Facebook style.
In Chewy's case I can understand his frustration. He has PD and has been a member of this forum for years. He has developed his theories over years and has openly explained everything. I have never tried it so I cant comment on its efficacy.
To my mind it i no different to me saying how I take my medication.
If a person with PD working for a drug company discovered a wonder drug would we expect him to give up his salary as a donation to the cause.
In the same vein I don't object if Chewy makes a few bob from genuine endeavours.
What I do object to is a sales pitch on a forum.
Thank you for the link.
What I am saying is that we should be free to debate all aspects of PD on this forum without outside interests interfering with the debate.
That includes how and why decisions are made on our medication by health care professionals and what impact it has on our health. This includes the way drug companies operate in relation to selling their product.
I would be against blatant advertising or self promotion of a product Facebook style.
In Chewy's case I can understand his frustration. He has PD and has been a member of this forum for years. He has developed his theories over years and has openly explained everything. I have never tried it so I cant comment on its efficacy.
To my mind it i no different to me saying how I take my medication.
If a person with PD working for a drug company discovered a wonder drug would we expect him to give up his salary as a donation to the cause.
In the same vein I don't object if Chewy makes a few bob from genuine endeavours.
What I do object to is a sales pitch on a forum.
hi
it was a bit black and white and there may well be the very odd case of disease just dissapearing, but no-one has currently got a method of curing pd - if they did everyone would very soon know about it. its perfectly possible that some herb may contain a useful ingredient, and then it would be isolated and sold in boots.
vitamins are not complimentary medicine, they are central to orthodox meds too. vit d is recognised by scientists as having a great deal of potential. i try to roll my own here in oz by standing in the sun. it helps.
it was a bit black and white and there may well be the very odd case of disease just dissapearing, but no-one has currently got a method of curing pd - if they did everyone would very soon know about it. its perfectly possible that some herb may contain a useful ingredient, and then it would be isolated and sold in boots.
vitamins are not complimentary medicine, they are central to orthodox meds too. vit d is recognised by scientists as having a great deal of potential. i try to roll my own here in oz by standing in the sun. it helps.
Leyther I had no idea your post in anyway related to chew experts previous posts of over 4 years ago. i agree with you that we should have open and free discussion here. Am I naive in thinking that is possible.
I can only guess from your post that your reference to outside influences on PUK that interfere with open discussion refers to the pharmaceutical companies and their relationship with PUK and that PUK is compromised and censors the forum because it does not want to offend their partners the drug companies. If you then reply this is not what you meant could you be clearer about who you do mean is influencing PUK in how it runs this forum?
As regards chewexpert (who i understand does not have Parkinsons) i think he is genuinely keen to help and is not making profits at our expense. I do know people who have tried his formula and it hasn't made any noticeable difference. Perhaps it has for others. It would be good to hear from them.
After searching on line I cannot feel positive about Sorim Khalsa. i am wary of people who sell us their version of the cause and solution to our problems (in profit making books tapes and lectures) and then sell the remedy.
I am not opposed to complimentary treatments but that is depending on what they claim. What i have noticed over the years is that some alternative /complimentary practitioners can give some symptomatic relief but their main attraction is that they sell hope.
I can only guess from your post that your reference to outside influences on PUK that interfere with open discussion refers to the pharmaceutical companies and their relationship with PUK and that PUK is compromised and censors the forum because it does not want to offend their partners the drug companies. If you then reply this is not what you meant could you be clearer about who you do mean is influencing PUK in how it runs this forum?
As regards chewexpert (who i understand does not have Parkinsons) i think he is genuinely keen to help and is not making profits at our expense. I do know people who have tried his formula and it hasn't made any noticeable difference. Perhaps it has for others. It would be good to hear from them.
After searching on line I cannot feel positive about Sorim Khalsa. i am wary of people who sell us their version of the cause and solution to our problems (in profit making books tapes and lectures) and then sell the remedy.
I am not opposed to complimentary treatments but that is depending on what they claim. What i have noticed over the years is that some alternative /complimentary practitioners can give some symptomatic relief but their main attraction is that they sell hope.
Hikoi
Re Chewy I honestly can’t remember if chewy had pd, I tried the search but to no avail. I didn’t know my post related to chewy in any way either until I wrote the reply, it illustrated a point for me which I shall clarify further.
Can there be open and free discussion on this forum? I hope so. Personally I think it is very difficult to achieve that anywhere. It requires us all to disengage from prejudice and look at each situation for what is the best solution.
The PUK partners with drug companies, I assume because it sees that as the best way it can achieve its aims to enhance the lives of pwp. To me this makes sense, drugs are approved by the authorities and any research that bears fruit is more likely to result in a widely available drug therapy.
Any therapy other than approved is deemed alternative. I tend to view any alternative sceptically, seeing them as purveyors of false hope or just too expensive. I have an inherent belief that if it was worth anything it would be available on prescription. I am not alone in this way of thinking.
However, we know that even our approved drugs are not perfect, they have side effects, often they serve several functions with different illness and they cost a lot to buy. Viewed objectively I could easily take the view that they are authority approved snake oils.
Since the PUK treat anything other than the approved drug therapies in a different manner, as we all tend to do in my opinion, I would say, yes, it favours its partners over alternatives. There is a fine line between censoring to protect the members of the forum and protecting the interests of partners. Just as there is a similar fine line between the best drugs for us as individuals and the influence of drug companies in the marketplace. We seem to have alternative therapy within our approved drugs too.
I want the best treatment available for my illness; in my opinion the way all parties, including pwp, view the available therapies will have to change to achieve this. How we make that change or if we can or should make any change is open to debate.
You say you know of pwp who have used chewexperts formula with no noticeable effect on their condition. I know of pwp who have used Sinemet with similar results.
The difference is they received advice from other pwp which helped them and now they get the benefit of the drug. Chewexpert’s formula does not receive the same attention because it is not accepted in the same way as Sinemet.
Re Chewy I honestly can’t remember if chewy had pd, I tried the search but to no avail. I didn’t know my post related to chewy in any way either until I wrote the reply, it illustrated a point for me which I shall clarify further.
Can there be open and free discussion on this forum? I hope so. Personally I think it is very difficult to achieve that anywhere. It requires us all to disengage from prejudice and look at each situation for what is the best solution.
The PUK partners with drug companies, I assume because it sees that as the best way it can achieve its aims to enhance the lives of pwp. To me this makes sense, drugs are approved by the authorities and any research that bears fruit is more likely to result in a widely available drug therapy.
Any therapy other than approved is deemed alternative. I tend to view any alternative sceptically, seeing them as purveyors of false hope or just too expensive. I have an inherent belief that if it was worth anything it would be available on prescription. I am not alone in this way of thinking.
However, we know that even our approved drugs are not perfect, they have side effects, often they serve several functions with different illness and they cost a lot to buy. Viewed objectively I could easily take the view that they are authority approved snake oils.
Since the PUK treat anything other than the approved drug therapies in a different manner, as we all tend to do in my opinion, I would say, yes, it favours its partners over alternatives. There is a fine line between censoring to protect the members of the forum and protecting the interests of partners. Just as there is a similar fine line between the best drugs for us as individuals and the influence of drug companies in the marketplace. We seem to have alternative therapy within our approved drugs too.
I want the best treatment available for my illness; in my opinion the way all parties, including pwp, view the available therapies will have to change to achieve this. How we make that change or if we can or should make any change is open to debate.
You say you know of pwp who have used chewexperts formula with no noticeable effect on their condition. I know of pwp who have used Sinemet with similar results.
The difference is they received advice from other pwp which helped them and now they get the benefit of the drug. Chewexpert’s formula does not receive the same attention because it is not accepted in the same way as Sinemet.
I think that PUK base their advice on the Science of Parkinson's disease. For any treatment there must be a burden of proof; it is not reliable proof to say I took supplement X and it helped me; simply because while you took X you also believed it would help (perception is a good creator of reality), your symptoms naturally varied, you were more active, you ate more, you enjoyed a concert, you saw your grandchildren etc etc. Which of these caused the improvement? Just because this followed this doesn't mean it was causative. Science is the best way we know of separating out potential causes and testing them one by one. In this way we work out which is the cause.
Without the scrutiny of the scientific method, albeit well intentioned, recommendations are hearsay and equally valid as saying don't take supplement X. Science isn't perfect but it is the best way to test these claims.
Of course you can take anything you like; just take care in ascribing effects to the X you are taking
dr jonny
Without the scrutiny of the scientific method, albeit well intentioned, recommendations are hearsay and equally valid as saying don't take supplement X. Science isn't perfect but it is the best way to test these claims.
Of course you can take anything you like; just take care in ascribing effects to the X you are taking
dr jonny
Dr Jonny
Hear, hear! Well said!
W
Hear, hear! Well said!
W
The problem with PD is that there is no readily available method to quantify the amount of drug we require at any particular time of day.
We do not have the advantage of the diabetic who is able to test their blood sugar level and vary the rate at which they take their insulin to match.
This can become a problem when taking Levadopa because absorption of the drug is affected by what we eat and when we eat it. Furthermore, it may not respond to normal drug regimes such as; take 3 a day equally spread apart.
So we enter the realm of trial and error, tweaking the timings to suit our day and our metabolism. If you find a neurologist or pd nurse who will tell you this before you start taking Sinemet you are very lucky.
Without that knowledge you could have great difficulty in getting Sinemet to work at all. In a discussion with my neurologist a recognised PD specialist I was told timings become more critical the longer we are on Sinemet.
If you don't get that advice from your neurologist, the alternative it seems is from other pwp on the internet. In effect an alternative therapy using an approved drug.
What concerns me is that a pwp may go back to their neuro or pd nurse for advice and have their dosage increased and remain ignorant of timings.
I reckon if how to take Sinemet was addressed, we may not be so interested in the alternatives
We do not have the advantage of the diabetic who is able to test their blood sugar level and vary the rate at which they take their insulin to match.
This can become a problem when taking Levadopa because absorption of the drug is affected by what we eat and when we eat it. Furthermore, it may not respond to normal drug regimes such as; take 3 a day equally spread apart.
So we enter the realm of trial and error, tweaking the timings to suit our day and our metabolism. If you find a neurologist or pd nurse who will tell you this before you start taking Sinemet you are very lucky.
Without that knowledge you could have great difficulty in getting Sinemet to work at all. In a discussion with my neurologist a recognised PD specialist I was told timings become more critical the longer we are on Sinemet.
If you don't get that advice from your neurologist, the alternative it seems is from other pwp on the internet. In effect an alternative therapy using an approved drug.
What concerns me is that a pwp may go back to their neuro or pd nurse for advice and have their dosage increased and remain ignorant of timings.
I reckon if how to take Sinemet was addressed, we may not be so interested in the alternatives
The problem with PD is that there is no readily available method to quantify the amount of drug we require at any particular time of day.
We do not have the advantage of the diabetic who is able to test their blood sugar level and vary the rate at which they take their insulin to match.
This can become a problem when taking Levadopa because absorption of the drug is affected by what we eat and when we eat it. Furthermore, it may not respond to normal drug regimes such as; take 3 a day equally spread apart.
So we enter the realm of trial and error, tweaking the timings to suit our day and our metabolism. If you find a neurologist or pd nurse who will tell you this before you start taking Sinemet you are very lucky.
Without that knowledge you could have great difficulty in getting Sinemet to work at all. In a discussion with my neurologist a recognised PD specialist I was told timings become more critical the longer we are on Sinemet.
If you don't get that advice from your neurologist, the alternative it seems is from other pwp on the internet. In effect an alternative therapy using an approved drug.
What concerns me is that a pwp may go back to their neuro or pd nurse for advice and have their dosage increased and remain ignorant of timings.
I reckon if how to take Sinemet was addressed, we may not be so interested in the alternatives
We do not have the advantage of the diabetic who is able to test their blood sugar level and vary the rate at which they take their insulin to match.
This can become a problem when taking Levadopa because absorption of the drug is affected by what we eat and when we eat it. Furthermore, it may not respond to normal drug regimes such as; take 3 a day equally spread apart.
So we enter the realm of trial and error, tweaking the timings to suit our day and our metabolism. If you find a neurologist or pd nurse who will tell you this before you start taking Sinemet you are very lucky.
Without that knowledge you could have great difficulty in getting Sinemet to work at all. In a discussion with my neurologist a recognised PD specialist I was told timings become more critical the longer we are on Sinemet.
If you don't get that advice from your neurologist, the alternative it seems is from other pwp on the internet. In effect an alternative therapy using an approved drug.
What concerns me is that a pwp may go back to their neuro or pd nurse for advice and have their dosage increased and remain ignorant of timings.
I reckon if how to take Sinemet was addressed, we may not be so interested in the alternatives
I agree that we sufferers and our carers are a great source of advice; in many ways we know more about PD than the consultants!
But there must be a difference between advising taking madopar (the drug I use) at 8am, 12pm, 4pm and 8pm and taking, say a tic tac, at the same time instead of madopar. The drug has been proven to be causative in relieving some symptoms. You may believe the tic tac helps but it lacks proof and this undermines the validity of the advice
dr jonny
www.dialoguewithdisability.blogspot.co.uk
But there must be a difference between advising taking madopar (the drug I use) at 8am, 12pm, 4pm and 8pm and taking, say a tic tac, at the same time instead of madopar. The drug has been proven to be causative in relieving some symptoms. You may believe the tic tac helps but it lacks proof and this undermines the validity of the advice
dr jonny
www.dialoguewithdisability.blogspot.co.uk
Very true Doc.
I find tic tacs to be practically useless in eradicating my PD symptoms,whatever time of day I take them. I suppose that is because they were designed for a different purpose entirely and the manufacturer hasn't spent billions on them and feels the need to get his money back by touting them as suppositories for that "all through freshness."
Having said that they haven't given me ocd/icd problems either.
I shall be sticking with the conventional tried and tested drugs because that's all there is really.
Also I don't believe the marketing hype for most complementary products.
What I do wonder is what the outcome would be if, some of the most promising products were given the financial backing available to conventional drugs.
Choices made by drug companies at to which drug to invest in or to pull out of could have significant impact on health treatment.
I find tic tacs to be practically useless in eradicating my PD symptoms,whatever time of day I take them. I suppose that is because they were designed for a different purpose entirely and the manufacturer hasn't spent billions on them and feels the need to get his money back by touting them as suppositories for that "all through freshness."
Having said that they haven't given me ocd/icd problems either.
I shall be sticking with the conventional tried and tested drugs because that's all there is really.
Also I don't believe the marketing hype for most complementary products.
What I do wonder is what the outcome would be if, some of the most promising products were given the financial backing available to conventional drugs.
Choices made by drug companies at to which drug to invest in or to pull out of could have significant impact on health treatment.
Hi where did you get shark oil from, I am struggling to source some. Thanks
I have started to use alternative therapies as it seems to me no one yet has any final answers for PD-- I believe in my case with some small but noticeable success--My specialist is very open minded and advises me what alternatives will not work with my chemical medicine--I had real problems with acid reflux taking Sinemet so he moved me to Madopar but continued with the morning 30mg of Rabeprazole to help the reflux although not a total cure but much less of a problem--I now take Co Q10 200mg tablets around midday then a vitamin e capsule in the evening---I do now try hard with my diet my caffine intake is now very low with my favourite Chocolate and Tomatoes not eaten at the moment -- I have to say my reflux is now gone most of the time and if any burning returns I get relief by taking 4 x Gaviscon extra tablets about 4 hrs after Rabeprazole ,if and when there is a problem, it seems to help calm it down. I have at times taken up to 12 Gaviscon a day but that is not necessary at the moment--I do accept with PD life is not ever going to be perfect but recently I am feeling a little better so much so that I am smiling again, life has just got better and I intend to continue to try and experiment with alternative medicines, it certainly hasnt effected me in any adverse way up to this time.
Hi cactus I have also changed my diet and got the same not impressed response . I feel great and this is after having PS for 10yrs
Hi! I'm a new comer to this forum. I was diagnosed a year and hope to manage without formal medication as long as possible. I've read that levodopa is toxic to the brain and actually kills the dopamine producing cells thus causing the nasty side effects after few years taking it. Has anyone read books by Janice Walton-Hadlock, professor of Chinese medicine? Her theories are absolutely fascinating. I would like to hear from anyone who has read her books, particularly the 'Parkinson's recovery programme'. I think she makes a lot of sense, and thus ignored by the establishment for her views on PD.
Greetings to all.
thanks Tuulia I read most of the book and I will read it again I think there is more for us to do for ourselves than pop pills
Hi Tuulia,
It surprises me often that the people singing the praises of Alternative Therapies and pointing out the defects of Conventional Medicine, especially pointing at the use of "harmful" drugs (and maligning Big Pharma for wanting to make profits and completely disregarding the multi-dollar industry of the alternative treatments ) is, that they do not seem to have the same sceptical attitude about AT, even knowing that drugs have to go through a protocol of testing ,etc.and stick to fairly rigorous rules , are critically evaluated by highly qualified scientists and have to show proof of efficacy in controlled trials, etc. I don't know where you found the evidence that levodopa is toxic (you could say water is toxic as you can kill yourself with water). Levodopa is still considered the best (the "gold standard") that you can get (nothing better has come on the market in the last 50 years) . The main long term "nasty" side effect are the dyskinesias, not everybody gets them, by the way, and these can be treated, if not alleviated. Be careful with Chinese medicine. Go without drugs as long as you can, look after your general health, but when the time comes do not be too afraid to go on levodopa, it can be very effective, largely without side effects and I, for one would not like to do without it.
Hi ! I take your point about multi-dollar alternative medicine industry, there is a lot of truth in that.
Janice Walton-Hadlock, in her book 'Recovery from Parkinson's', talks about PD being an electrical problem rather than a chemical one, caused by a wrong thinking style, a long term state of living in a sympathetic adrenaline mode. She calls this state a dissociation, and when it becomes chronic it can cause the symptoms of PD. Treatment is to change our thinking style, like CBT. I'm sure this sounds rather peculiar to many people but I believe there is a lot of truth in it. She also talks about PD personality traits; serious, stoic, introverted, punctual, quiet, controlling, organised, avoiding conflict, high capacity for analytical intellect, highly developed sense of personal responsibility, low novelty seeking trait. I wonder how many pwp identify with most of these. By the way, the books by this professor can be down loaded free. I would like to hear more views from interested readers.
I've read your post a few times now and my initial bah humbug response to the book author's apparent personality led causality for PD symptoms has mellowed enough for me to respond. The brain produces both chemical and electrically transmitted messages for want of a plainer term. The internal electrical element is generated from the chemicals in the supplies we provide via food, medicines, environmental and a key component, sufficient viable brain cells to complete the process.
The author's approach seems to point at suggested low adrenal flows resulting in apparent PD, which is understandable as that impacts on energy levels. However, the personality traits referred to are as related to the fight or flight response to danger as the more associated aggressive approach. A person relying on negotiation to survive rather than physical resilience still needs to call on reliable adrenaline production.
The lack of Dopamine production by a depleted contingent of suitable brain cells is at the root of PD symptoms as that impacts on adrenal flow at the optimal time. Too little dopamine and we're slow, stiff, tired, uncoordinated etc.. Too much and we're hyper, agitated, in effect 'doped up'.
I haven't got the answer but I know I need more dopamine to continue or post as it is before I crash.
Hi All
I had not heard of the work of Janice Walton-Hadlock, and her book 'Recovery from Parkinson's but I am intrigued by the list of traits that Tuulia mentioned. I am diagnosed with PD for 18 months and I fit nearly all of these traits. I have downloaded the book from
http://pdrecovery.org/recovery-from-parkinsons
Had a quick glance through it is very meaty (400 pages+) and interesting so i will need some time to digest it!