Was PD cured in the 1980's? It's a GM1 Ganglioside deficiency?

[zawy]

Again and again, I accidentally come across some compound that seems to have profound effects for PD, and yet there is no one getting paid to tell us about it, so we never hear about unless it is through each other.

For example, here's a phase 2 trial completed 4 YEARS AGO for a compound shown in the 1980's to help PD and it shows patients having a REVERSAL of symptoms for as long as they got the 2/day injections. The patients were forced to stop taking it and began showing normal progression of PD in the 2 years since. It seems to be very expensive as it needs to be derived from animals, but it might be much cheaper if there was a larger need for it.

The trial was proposed 13 YEARS AGO. The problem is that it is a natural compound, so no one can make a profit from it.

ncbi.nlm.nih.gov/pmc/articl...

(subcutaneous injection, 100 mg, 2 doses per day)

The link below is the first of 5 research papers in the 1980's showing its benefit for PD in animals. There are literally 100 natural compounds that have shown the same results in animals, although many of them will probably not reach the human brain, including the most powerful.

ncbi.nlm.nih.gov/pubmed/614...

Three years ago GM1 was discussed on this web site:

healthunlocked.com/parkinso...

And an interesting comment from one poster (3 years ago)

"In the last five years I have seen dozens of these studies. I never see where they actually go into treatment. I am receiving the same treatment I would have gotten twenty years ago. Seems odd."

Moreover, this natural compound may be the underlying reason nilotinib works. The tyrosine kinase inhibitors like nilotinib induce GM1 (see 2006 article jimmunol.org/content/176/2/... ). So it begs the question: exactly why are the researchers interested in leukemia's tyrosine kinase inhibitors in the first place? Did they or Novartis see the work on GM1 and say, hmmm, is there a pharmaceutical that can do this?

There are 61 papers with GM1 Ganglioside and Parkinson's in the abstract. Here's one of them:

"The nigral neurons of PD subjects that were severely deficient in GM1 showed subnormal levels of tyrosine phosphorylated RET. Also in PD brain, GM1 levels in the occipital cortex, a region of limited PD pathology, were significantly below age-matched controls, suggesting the possibility of systemic GM1 deficiency as a risk factor in PD. This would accord with our finding that mice with partial GM1 deficiency represent a faithful recapitulation of the human disease. Together with the previously demonstrated age-related decline of GM1 in human brain, this points to gradual development of subthreshold levels of GM1 in the brain of PD subjects below that required for effective GDNF signaling. This hypothesis offers a dramatically different explanation for the etiology of sporadic PD as a manifestation of acquired resistance to GDNF. "

ncbi.nlm.nih.gov/pubmed/254...

In the past 5 years, I'm seeing more work on natural compounds than in the past 25 years, and I can order the strangest of these direct from china, either not available here or much more expensive (100x more expensive in new or strange ones).

I wonder if PD has been cured and we are not told because the government wants us to spend $5,000 to $100,000 per year on pharmaceuticals.

[Hidden]

I wonder!

[Hikoi]

As my government (like many others) pays for my health care that includes pharmaceuticals I'm not sure what to make of your last statement.

[zawy in reply to Hikoi]

The pharmaceutical industry is the largest lobby in the U.S. That's why we pay about 4 times more for pharmaceuticals than you do. Our government does not pay for our health care. Maybe you were not aware of it, but the American people do not control the U.S. government as well as the Chinese people control the Chinese government.

[oceanflower]

Well, I am always suspicious where there is money to be made, but in this case, the government has to pay out a huge amount of $ for us Parkies as many of us go on disability and thus gov't pensions sooner, can't contribute to the GDP, and cause a drain on healthcare funds. Don't you think it is in the best interest of governments to push for a cure before a huge(r) financial crisis in healthcare hits with many of the baby boomers getting older (and sicker). For this reason, I don't believe there is a conspiracy here. My prediction is that more research funding (from Gov't as well as private contributors) will be aimed at Parkinson's and Alzheimer's diseases, as more of us Boomers get these diseases. This is my Pollyanna-ish view!

[zawy in reply to oceanflower]

Yes, you're being Pollyanna-ish. I know it is fun, easy, and happy to be Pollyanna-ish. There are good, healthy, and moral reasons to deny facts. Sometimes it is best to lie to ourselves, so maybe it is best not to read the following.

The pharmaceuticals are by far the biggest lobby in Washington DC. That's why it will cost you $1,000,000 to get nilotinib for 10 years, despite the drug already having a huge profit and not needing any extra approval costs. This is why Obama care forces more people to pay health insurance. That's why my neighbor is causing all of us to pay $2.5 million per year to get injections that the research says will not do any good.

The military lobby is why we invaded Iraq when our lead inspector there said in all the late night talk shows there were no weapons of mass destruction and there were no al Qaeda links.

The banking lobby is why we gave $30 trillion (estimated by 2 respected economics professors) to the criminals who caused the crisis and why 2 presidents shut down the FBI's attempts to put the criminals in jail like we did to over 1,000 bankers in the S&L loan crisis in the 1980's.

Iraq cost us about $50,000 per family and about 40,000 destroyed American lives. The banking disaster and giveaway was 10 times worse. All the toxic assets now belong to taxpayers instead of the banks: QE did not provide liquidity to our economy, it gave banks cash in order to shift "assets" with negative value to the taxpayer.

The health care industry does about the same amount of damage every 10 years, over and above reasonable health care costs. We rank in health care about as good as Cuba and Slovenia (according to World Health Organization). This is because we do not provide health care to those that need it, but to those who have enough money, which is arguably not even half of us.

PD patients are relatively few in number. Even cancer patients and heart disease patients do not get adequate health care in the U.S., and are grossly overcharged compared to every other country that provides better health care to more people.

We have access to food supplements only because the FDA and pharmaceuticals were blocked about 15 years ago by a huge number of people who wanted to keep access to them. In Latin American, you can walk into a pharmacy and get pretty much any pharmaceutical you want (probably not some of the most intense pain pills) without a prescription and at 1/10 the cost we pay here. Basically for about the cost of a co-pay at the doctor. That people are surprised by this shows how much freedom we've lost and don't even notice. This is due to lobbies, and why we're electing 2 black men in a row: we want to get the good old boys off our back. Unfortunately, Obama turned out to be whiter than white with no change, not even to Bush's finance advisors. Ben Carson will be different.

[oceanflower in reply to zawy]

Ha ha…well, first off, I don’t care about being magnetic or popular - I have that Parky apathy thing, after all…

I am not lying to myself or in denial about facts. In fact, I agree with your sobering assertions regarding the existence of the pharmaceutics lobby, military lobby and the banking lobby too. These arguments are discussed up here in Canada as well. But I also think my argument has credence - that the government (up here anyway) is likely looking for ways to deal with the aging boomers’ costly health problems, especially neuro diseases like ours. Although there are almost certainly pharma lobby efforts here as well, I really doubt that the government is that short-sighted not to look for answers to problems causing havoc with balancing their budgets. It comes down to money and if a cure for a clumping protein problem can save billions, I really believe our government would get behind it.

[zawy in reply to oceanflower]

Oh, you're just talking about Canada. That's great if the Canadian government is thinking about the future and its budget. That doesn't happen in the U.S. We're the biggest debtor country in history. Instead of looking out for senior health costs , our government actually tries to make our seniors pay more. For example, by making it illegal to get pharmaceuticals from Canada. Canadian sources of pharmaceuticals. We pay about 500% more for pills than you do. Rasagiline is $20 per pill here, but only $3.50 there.

[Dinolulu]

What natural compounds are you taking - you mentioned getting some from China.

Are you having any success with them?

[zawy in reply to Dinolulu]

The stuff I do is really long. Determining if any of them really helps is really difficult. The strange stuff I've ordered from China so far is fisetin, apigenin, naringin, nobiletin, tangeretin, and hesperidin. I'm looking into a lot of others. I see good results for the others I've mentioned in a recent and a 9/15/2015 post about a-Syn, but I have not made confirmation of bioavailability and ordered them.

The non-food strange things I do are hanging upside down sometime with gravity boots (to increase head pressure to reduce inflammation that I suspect in my case), wearing a 250 watt infrared LED helmet I made that may help in some cases of dementia (not that I have that, I just do it for cortex health), and laying naked under 1000 watts of halogen work lights with side reflectors to simulate the beach without UV. The simulated beach seems to be greatly improving my mood, even if it not why my tremors recently reduced.

In terms of nutritional supplements in my stock, I have about 100. The following is my daily goal.

1 mg rasagiline

Vitamins D, E, A, B-complex, K. (2000 IU, 800 IU, 25,000 IU, B-100, 1 K pill)

Calcium, magnesium, zinc, MSM. (1000 mg, 400 mg, 60 mg, 4 g)

Fish oil, olive oil, canola oil. (3 g, 30 grams, double the recommendations)

Extracts: green tea, black tea, grape seed, ginseng. (2 pills each, 3x/day)

citrus: naringin, nobiletin, tangeretin, and hesperidin (1 g each 2x/day)

fisetin

apigenin

melatonin (13 mg at bedtime)

5-HTP (currently about to restart, 200 mg 2x/day)

6+ cups of coffee

8 mg nicotine in gum (like 4 cigarettes)

200 mg aspirin

1/2 beer 2x/day

Food for PD in men: strawberries, apples, blueberries.

For me seems to help: broccoli, kale, spinach, peas.

I am less consistent with the following: ALC, ALA, NAC, citicholine.

1.5 hour exercise with heart rate > 120 BPM.

No chocolate, milk, or stressful video games.

LED helmet and halogen light bed.

Everything I've listed has good evidence in animals models of PD or human epidemiological evidence, except for maybe calcium, vitamin K, MSM and a couple others. They might have support directly, but I have not researched them for PD.

Melatonin seems to have helped a lot in terms of my mood, and maybe 5-HTP too, if not reduced my tremors.

I have minor tremor in left thumb. It was starting in the other fingers and other hand before I recently increased my efforts in the above. My mood recently improved along with the reduced tremor. It could have been more exercise the preceding month, going from 30 min/day to 1.5 hour/day, the halogen bed or LED helmet, 5-HTP, melatonin, alcohol, the citrus stuff, vitamin E, fisetin, rasagiline more consistently, or MSM. These were the new things in the preceding month.

To be clear, when I say "100 natural compounds like this" I mean they are shown to work in animal models at slowing PD by 50% or more. GM1 is different in that it apparently stopped and even reversed PD in humans for as long as they took it.

[Coblrman in reply to zawy]

I suggest you drop anything that you are suspicious about regarding whether it actually helps you and keep all that you feel have helped. Do this for a week and see if it makes a difference.

[zawy in reply to Coblrman]

I do not do these things based on how I feel. I do them based on the science. I have not expected them to show any improvement, but only to stop the disease progression, which I will not be able to detect or measure. Except I do some also because they "feel good": melatonin, exercise, 5-HTP, light therapy, and alcohol.

[clajac]

I would like to know what you are using too.

[judam9]

that is a very interesting question. and i wonder how many other diseases are also being set the same way. can't make money on that so we just not tell anyone about it. how many people have suffered and died because big Pharma's didn't want to lose the chance of losing all that money. on other medications that don't work. ?

[zawy]

I am not taking it because my uric acid levels are already higher than the high group in this study. The inosine is being used to raised uric acid (urate) in the blood and they reduce the dose based on measured uric acid levels. Uric acid that gets too high can cause gout. They are testing inosine because it has been noticed for maybe 100 years that people who ate a rich diet and drank a little alcohol and/or had gout problems were not getting Parkinson's, and in the past couple of decades a lot of research confirmed the uric acid connection.