Early symptoms and resolution

About Parkinson's and health Newly diagnosed
1

I haven't been diagnosed yet. I am 47.

However my symptoms are/were :

Lack of sleep (waking up an hour after getting to bed, then trouble getting to sleep again), lurid dreams (which you remember because you wake up during them), deteriorating handwriting (signature all over the place), slowness of typing, orthostatic hypertension (dizziness when standing), starting to lose my sense of smell, constipation , declining voice ( terrible at singing and quieter) grumpy face and the beginnings of a tremor.  Some stiffness when getting out of the car.

Regime:
Mannitol (you absolutely must at least try this - yes it will make you runny, hold it in to exercise the vagus nerve. You can get it on the internet - it is not expensive), Exercise, Coconut oil, Low carb, high fat diet where possible. ( Imagine your brain has now become a diesel engine. Carbs is petrol. It can't cope with carbs).

Avoid milk especially skimmed and semi-skimmed (reduces uric acid levels). Cheese I think is OK.
Avoid sugar , biscuits, chocolate.
Exercise is absolutely key- Stationary bike. Gym when I have time. Need to do 50 minutes cardio + 40 minutes non-intense activity pretty much every day.
Social activities also help. Beer helps raise your uric acid levels. But not too much beer - alcohol can lower your magnesium levels which result is poor sugar control
Watch some comedy before bed. Read an historical novel which details how shit life was back in the 19th Century/ World War 1/India/France etc. Thank your lucky stars you were not born then. Or Syrian now.
Also take Vitamin b1 with coq10 - from wilkos, curcumin with pepper.
Vitamin D + K ( comes with calcium for some reason). Or go out into the sunlight at Midday and eat Brassicas
Take Magnesium Citrate as well.
Took Melatonin sometimes but not sure this helps that much or at all, so have stopped.

Current situation. Tremor gone, though may get some in the middle of the night if I have had a bad day previously (no excercise and hitting sugary snacks). Voice better. Face better. Sleep ok, but will still have vivid lurid dreams where I wake up after. Hypotension comes back with lack of exercise at work. Basically it is better if I don't eat any carbs before lunch. Smell restored. 

Most of this I think be ascribed to Mannitol - is about £36 for 2 kg from Blackburn distributions. Many on Healthunlocked are also showing good results from this. 

 

2

Hi Alexjohn, welcome to the forum.

Some of what you say may contain a grain of truth, but:

You say carbs are bad for the brain. This is utter nonsense, the only nutrient the brain uses is glucose, which, last time I looked, is a carbohydrate. Fats can’t pass through the blood brain barrier.

Mannitol works in the colon. The colon is innervated from the inferior mesenteric plexus, which is nothing to do with the vagus nerve, which terminates in the diaphragm.

Alcohol does not cause lowering of magnesium levels - if it did, most of the population would be suffering from hyomagnesemia which can be fatal. As they aren’t all dropping dead from acute cardiac disrhythmia, we can assume that alcohol just makes people drunk and ruins their livers.

Blood magnesium levels have nothing to do with glucose control.

There is no need to take additional vitamins if you eat a normal healthy diet. You certainly don’t need magnesium unless your levels are low- some medications can cause that, particularly Omeprazole.

And your improvement in symptoms can’t possibly be due to Mannitol - virtually none is absorbed by the intestine. That’s why it’s such a good laxative. You just poo it out. Used intravenously it can reduce intracranial pressure in head injuries, and eye pressure in acute glaucoma. Just swallowing it makes you poo.

Exercise is good, though, specially when you’re running to the toilet.

Alk the best

Mike

 

3

You say carbs are bad for the brain. This is utter nonsense, the only nutrient the brain uses is glucose, which, last time I looked, is a carbohydrate. Fats can’t pass through the blood brain barrier.

If you have a look at wiki (I know) the ketogenic diet we have this:

"Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fueling brain-function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source"

I have seen at least one person on youtube who has experience much improvement in their parkinson's symptoms using a ketogenic diet. However I admit that going Keto is extremely difficult for most.

You say: Blood magnesium levels have nothing to do with glucose control.

From this site I read:

https://www.diabetesselfmanagement.com/blog/magnesium-the-forgotten-healer/

“Results from three very large studies indicate that people who consume a diet rich in magnesium have a lower risk of getting Type 2 diabetes.”

People with diabetes are more likely than those without to be low in magnesium. According to an article on About.com, “Elevated blood glucose levels increase the loss of magnesium in the urine, which in turn lowers blood levels of magnesium.” So getting enough magnesium is especially important in diabetes.

So I would say there is at least a chance that Magnesium has some impact on blood glucose.

And your improvement in symptoms can’t possibly be due to Mannitol - virtually none is absorbed by the intestine. 

That is your opinion

This from the clinicrowd website on Mannitol and Parkinson's - dated October 2017:

https://clinicrowd.info/introduction/

We can however already hint that we already see some statistics, such as :
88% regained sense of smell
70% improved and maintained quality of life
64% improve their energy and vitality level

This correlates to my experience. The important thing to note is that Clinicrowd gain no benefit from this stance - they are just reporting facts - as Mannitol is a cheap sugar there is no financial gain to be had. 

I have also come across several people on healthunlocked who have benefitted from Mannitol. 

Also Gary Sharp on http://www.outthinkingparkinsons.com/articles/mannitol

Since there appear to be more and more evidence that Parkinson's starts in the gut it is not unreasonable to think that it can also be stopped there. 

4

Alternatively the Mannitol could just be having a placebo effect. 

 

5

You say that it is my opinion that very little is absorbed from the gut. It is not my opinion, it is a fact. You are quite right, however, in mentioning the placebo effect. This is never measurable, but accounts for many PD treatments that are non-standard. 

You are also right to suggest that PD may start in the gut. This is becoming a theory of origin for many autoimmune disorders. However, flushing out your benign bacteria with Mannitol wouldn’t appear to be a wise move if that is the case.

And I still maintain that magnesium has no effect on blood glucose. I have been Type 1 diabetic for 21 years. When I became magnesium deficient due to medication, and when I was on treatment for it, my BG changed not a dot. There is no mention of magnesium on the Diabetes UK website or forum. Nor is altered BG listed as a symptom of magnesium deficiency. I note one responder on the website you pointed me to recommended putting magnesium salts in the bath, because magnesium is absorbed through the skin. Aye, right. If that were true nobody in a hard water area would get osteoporosis. But they do. As the magnesium is dissolved in the water, and skin is waterproof, it would seem futile to try it.

You have to be wary of any unofficial site, because they tend to be filled with non-peer reviewed research articles, or worse, anecdotal  tales. I drove a Peugeot 405 when I was diagnosed with diabetes. My older brother, who has driven Nissan for years, has no sign of diabetes. My younger brother drives Fords. No diabetes. What does that tell you? Absolutely nothing. Don’t confuse associations with causes or cures.

All the best 

Mike

.

6

One thing I find hard to believe though is that the 88% people reporting a restored sense of smell being a placebo effect. And if that is indeed a neurological benefit being reported surely it is possible there could be other actual benefits from taking the stuff?

 

 

7

It's good to have the cold hard skeptism of a doctor on the forum.

So a few more questions

So for instance given that a ketogenic diet benefits epilectic children is it not possible that it could also benefit parkinson's patients?

http://www.gutbrainaxis.org/pdf/cross%20paper%20KD%20vs%20AEDs.pdf

After 3 months, the mean percentage of baseline
seizures was significantly lower in the diet group than in the controls (62·0% vs 136·9%, 75% decrease, 95% CI
42.4–107.4%; p<0·0001)

 

8

Also given that 70% of files also benefited from Mannitol's effects as well as the results from Clinicrowd do you think there is even a slight possibility you could be wrong?

https://www.sciencedaily.com/releases/2013/04/130407090737.htm

 

 

9

alexjohn

 

Always sceptical of such a forceful  first post advertising some new regime and an expensive supplement. eye roll

10

Expensive? Its about £35 for 4 months supply? That's less than 30p a day. And given it does the same job it is cheaper than syrup of figs. Anyway head over to healthunlocked / Parkinsons movement and ask them what they think about it. 

11

There isn’t the slightest possibility of me being wrong about Mannitol absorption from the gut. It is very poorly absorbed, which is why it is often used as a sweetener in ‘diabetic’ foods. It is only ever used medically by intravenous infusion for that very reason. If you think that all the doctors and medical scientists are wrong about Mannitol, then you’d better be careful you don’t fall off the edge of the flat earth.

In any event, regularly taking an osmotic laxative can lead to significant electrolyte imbalances, some of which are highly dangerous, colonic stasis or paralysis, and there is an increased chance of colon cancer. That’s a bit more real science.

Good luck with that then.

12

Hi AlexJohn,

You might be interested to know that researchers in Israel found that Mannitol can inhibit the formation of alpha synuclein aggregates (clumps of protein associated with Parkinson’s) in a dish.
Given this success, they tested Mannitol in genetically engineered flies and mice that produce a lot of alpha synuclein. They found that Mannitol treated flies and mice had significantly less alpha synuclein aggregation in their brains.

These results led the scientists to suggest that “mannitol administration in combination with other drugs could be a promising new approach for treating PD and other brain-related diseases such as Alzheimer disease.”

Mannitol is widely available and is added to a wide variety of processed products.
The research supporting the beneficial effects of Mannitol in Parkinson’s is limited to just one peer-reviewed journal paper and Mannitol has not been tested in a clinical trial in people with Parkinson’s.
Consumed in excess, mannitol may cause diarrhoea, abdominal pain, and excessive gas. Mannitol has also been associated with worsening heart failure.

We also do not know what effect it may have on absorption of L-dopa and other Parkinson’s medications.

We advise that any change in treatment or taking a new supplement should be discussed with a doctor.

I hope the information above provides more clarity on the topic.

Thanks,
Reah

13

Ok thanks for the warnings. I shall limit my Mannitol. Tremors are back anyway. 

14

OK, omit the last 4   words in my post number 9.

15

On reflection I shall still continue to take some Mannitol (effectively a single heaped teaspoon most days when I am not able to do a lot of exercise with lots of liquid and coffee) , whilst being aware that there may be downsides . The anecdotal evidence ( 70% on the Clinicrowd website say it helps them - though I strongly suspect the figures will be lower than that maybe only 40%) and the fact it really helped me seals it. To use legal terms there isn't the "beyond reasonable doubt" evidence that the skeptical would want. But the "balance of probabilities" says it helps me and some others. Even Ian Frizell stated he got some smell back and he is far down the Parkinson's road.  And given that it is not a new drug, but a freely available sugar that pharmaceutical companies can make not money off the "beyond reasonable doubt" evidence is unlikely to materialise. 

 

16

No, not the balance of probabilities because those figures you quote are approaching the placebo effect numbers you can get in this sort of uncontrolled trial. In all of this. It’s worth remembering that constipation is a common symptom in Parkinson’s disease, and the medication of choice has long been Mannitol, or a similar osmotic laxative. Given that, there is an absence of any reports of improvement on the treatment. Well, apart from pooping.

The Improvements that Reah mentions result from the equivalent of administering Mannitol intravenously, not orally. 

17

Seeking to reconcile these views: -

If 98% of Mannitol just makes me fart, this may not matter if the other 2% does cross the blood brain barrier, and is effective for some patients.

However is there any information/experience of injecting Mannitol we can learn from or copy?  I realise this would not be NICE or FDA approved.

 

 

18

Mannitol does not cross the blood brain barrier.

It is used intravenously to osmotically draw fluid from the brain to reduce pressure on an injured brain. If it crossed the blood brain barrier, it wouldn’t have that effect. It would also probably kill you. It already NICE and FDA approved for this purpose. So the tiny amount of orally taken Mannitol that gets into the bloodstream does nothing apart from being excreted from the kidneys. It’s not even an amount that would reduce the fluid from the brain. That’s science. 

So how does it benefit folk with PD? Anybody’s guess. Placebo effect? Probably. 

And you should never try to inject an oral preparation of Mannitol. That could very well be fatal.

19

With all due respect to Mike I think in this instance the number of people reporting benefits is a little too high for a placebo effect.

From healthunlocked - parkinsons movement

"I have had amazing results in 10 days of starting Mannitol. It has not dropped my blood pressure and if it did i was ready to chance it as could always stop mannitol. I will post updates on my progress but I feel fabulous. My right arm and hand now work like they have been turned on after a car service. And I am happy again before taking mannitol i didnt care if i lived. Try it there's nothing to lose."

This certainly won't benefit everyone, but I think there is a large minority who may report an improvement. For me this has lasted 10 months so far. Obviously there may be potential downsides as Mike had indicated. Unfortunately because this is a freely-available sugar substitute there is not incentive for any pharmaceutical companies to do any double blind research on this.

Certainly if you suffer from constipation - this is worth a go.

20

re: Magnesium. I take 50% of the RDA as magnesium chloride because of the evidence of widepsread dietary defcit:
http://europepmc.org/articles/PMC5637834
The llnk with PD is that restoring normal tissue Mg should ensure that the level of Mg-ATP is optimal. ATP is the cells' energy currency, recycled from ADP by the mitochondria, well-known to be 'damaged' in PD. Most of a cells Mg will be bound to ATP, around 5-10mM

Inosine: I take inosine whiel awaiting the clinical trial results. After VitC uric acid, a product of inosine metabolism, is an inportant extracellular antioxidant.

Mannitol: I'm not a fan. alphasyn is often portrayed as the bad guy in PD (almost always in fact) But asyn oligomers bind iron. Its a minority view but that activtiy might have evolved to protect neuronal cells. Free iron is nasty

Peter.