WinnieThePoo

Poo management can stop Parkinsons disease in its tracks...

maybe. Best case. The point is it won't reverse symptoms due exclusively to lost dopamine neurons. Microbiome control relates to the disease mechanism or progress, not the existing neuron death

(the other point was that I can write a misleading click-bait headline like the best of them).

That said, tentatively, rabbits foot rubbing and wood touching, I think at least some aspects of my PD have improved. Certainly my wife thinks so. Whether this is to do with diet, exercise, supplements or stress management (I suspect a combination of all of them), it is not to do with dopamine neuron replacement***

So maybe "the disease process" - this thing reseach is trying to stop with mcc950, exanatide, isradipine, monoclonal alpha-synuclein antibodies and similar therapies - maybe it does more than just kill dopamine neurons in the substantia nigra (and olfactory bulb it would seem). Maybe that inflammation, A-syn, and other stuff is ALSO responsible for some symptoms directly.

The Exanatide trial (phase 2) was interesting in that respect. Primary outcome was to stop the progression as measured by motor symptoms score off medication. And results were good. If the drug stops the destruction of neurons, and neurons are PRIMARILY responsible for motor symptoms, that fits. Secondary outcome was relief of non-motor symptoms. And results were not statistically significant (they werent bad - just not good enough compared to placebo)

But the evaluation was after a wash-out period of 3 months. This was to ensure the improvement was due to the disease halting mechanism of the drug, and not symptomatic relief from the drug. That fits when PD is dopamine loss due to neuron damage (the motor symptoms). But it doesnt fit if PD is ALSO other crap directly caused by the ongoing disease process(es).

So, for me, the exanatide results support my theory (the only explanation I have for now about why, maybe, a bit, I improved) that some of the symptoms are caused by the disease process (A-syn, inflammation etc) rather than the dopamine loss

Hence, maybe there will be some symptomatic relief from these therapies, including poo management, for all PWP, in addition to halting or slowing the disease

***Need to research more, but I am reminded of the GDNF trials at Bristol. If A-syn disfunction is reduced by a therapy (including poo management) then maybe GDNF in the substantia nigra is able to heal or regrow some neurons. Maybe.

Ratzkywatzky

"I will post a bit later how I started with PD and what I have done, and how I assess progress. "

Looking forward to reading that, I'm impressed with your positive attitude and critical approach to navigating through the rabbits den of false leads and directions it's so easy to get lost in online and especially on this site!

WinnieThePoo in reply to Ratzkywatzky

May be a day or so. Driving through France tomorrow and I want to think it through.

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sweetgrassgirl

Wow Ronnie..What an ANAL agy..Anyway..after All the holistic protocols my sister has taken for microbione and constipation since the 1980's ( which we feel was the beginning cause of the PD onset coupled with environmental toxins was her ruinationand and ignorance of Drs. allopathic and holistic as well..missing the point addressing Not the whole body)..i have discovered (on my own by reading labels then talking to pharmacist) BISCODYL suppositories work within 1 hour to my sister's amazement. Sadly she started using lowest dose fentanyl patch for stabbing pain (opiates cause constipation too) but constipation gone after 40 years of suffering.

My sister actually much worse than PDismPLUS. That is another sad issue the progression of beyond the Gut Brain connection. AND for additional microbione HELP..i have discovered organic GHEE.. A PREBIOTIC food (clarified butter - shelf stable) excellent for growing good gut bacteria to offset the bad over growth. I have learned this on my own as every doctor says .."we don't know the cause and we don't know what else to do beside symptomatic relief drugs..here is the sinemet the robinerol the tinazidine the antadine bla bla no thank you the side efx worse than the symptoms you trying to get rid of down the road. so much more to this...but constipation an issue with most Neurological disorders_even autism)

francis6

For me, changing my diet by, firstly, eliminating sugar and then all other carbs (save those that occur naturally in vegetables) has seen a big improvement in many aspects of my health (including gut health). There is known to be an association between diabetes and PD (exenatide is a drug developed for T2 diabetes) and there has been recent research that shows many PD patients fail to produce more insulin in response to consuming glucose (meaning their blood glucose levels spiked higher and for longer).

It is interesting to note that the rise in cases of PD (as with T2 diabetes) cannot be accounted for by an ageing population alone and comes against a background of rising consumption of carbs.

One (of many) notable health improvements for me was the elimination of persistent candida infections - candida overgrowth seems to be another factor and is fed by a diet high in sugars.

Months after changing my diet, and feeling many benefits, I had a gut biome analysis done and it came out very good save for one bacteria involved with vitamin B1 (a common occurrence with PD} so now I take a B1 supplement.

It may not work for anyone else but my regime of low card (high fat) diet, daily exercise and plenty of good sleep has seen my weight and blood pressure drop to good levels, ankle swelling disappear, cold hands and feet improve, sleep improve, mood improve, bowel habit improve, persistent infections clear up, skin improve etc. i.e. just about everything. Other than that I have significantly reduced the amount of Sinimet I take (and often forget it altogether).

I remember people used to say you are what you eat - I expect that is still true.

francis6

A couple of further thoughts:-

1) There is a school of thought that PD is not purely associated with a deficiency of dopamine but there may also be deficiencies in other neurotransmitters (e.g. the GABA collapse theory). Many people with PD experience anxiety / depression (as I have done) and my mood has greatly improved since changing my diet, cutting back on Sinimet (which made me worse) and taking GABA enhancing supplements.

2) Whilst resurrecting dead neurons would seem to be unlikely, helping those that are in a poor state may be possible? Have you looked into autophagy and its stimulation through diet/fasting etc.?

PDGal4 in reply to francis6

What GABA enhancing supplements do you take and dosages?

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WinnieThePoo in reply to francis6

I am travelling at the moment. I'll respond further later. It is clear that PD involves more than dopamine. Interesting that you not only manage your diet (there are a lot of keto diet followers claiming success) but so so specifically to manage your microbiome, have tested it, and find it "works". Maybe we need to try to assess how well it works, but reducing sinemet dose sounds very positive. The low carb high fat sounds in the keto camp. I don't rule it out but I am a bit wary of it at this stage. I prefer a diet solution which is a restoration of our natural dietary needs, rather than a contrived "system-shocker". We descended from the apes - as gatherers as much as hunters, and need carbohydrates. Certainly we need fruit . Humans, higher primates, guinea pigs, fruit bats, and a small handful of others are the only animals unable to manufacture enough vitamin C for healthy living, and need to ingest it.

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francis6 in reply to WinnieThePoo

Winnie,

Several things:-

1) My wife (who has been T2 diabetic for about ten years) first interested me in the keto diet as it is thought to be beneficial to diabetics and there is a known connection between diabetes and PD. Her doctor reduced her medication subsequently and pronounced that her blood/glucose levels would classify her as "pre-diabetic".

2) The keto diet (under various guises) has been around for a couple of hundred years to treat various conditions and has been used, by doctors, as a treatment for another neurological disorder (epilepsy) since the 1920s.

3) Without protein or fat we would become ill and die, carbs are not essential but I would not, personally, cut them out altogether. The notion that fats are bad for you (and carbs aren't) grew out of flawed research in America in the 50s and 60s and was encouraged by interests amongst cereal and sugar producers. Some fats (particularly highly processed ones) are bad for you but "good" fats are essential. There are people, like famed Canadian academic Jordan Petersen, who now just eat meat and seem to be doing very well on it but I don't intend to go that far.

4) I eat a normal amount of vegetables (but not potatoes) and small amounts of fruit (mainly berries and not pineapple, banana) but you have to be aware that modern, farmed fruit is much, much higher in sugar than fruit

growing in the wild.

5) Carbs in modern foods (like commercially produced bread) break down into sugars very, very quickly and give a spike in blood/glucose levels very quickly.

6) Elevated blood/glucose levels are known to be highly damaging to our blood vessels, major organs etc. and cases of T2 diabetes are growing dramatically.

My take on it is that gut health is very important to a host of conditions and that one of the primary causes of poor gut health is a modern diet high in sugar and near-sugars (refined carbs).

Going keto (and I don't follow it religiously) was a bit of a shock to the system but, my belief is that, I was reducing things that had become pretty toxic for me rather than a kind of "shock therapy" for the system. In a more "natural" environment sources of carbs would be pretty limited for much of the year and hunter/gatherers would have been largely dependent on hunting at this time of year - my current diet seems more natural to me.

It may well not work for everyone as we are all different, but that is my take on it.

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francis6

Having done a bit of research I am taking L-theanine, usually 400mg a day. Have felt calmer and sleep better. Diazepam (valium) is the prescription medication that boosts GABA. My understanding is that GABA and dopamine need to be kept in balance to avert over anxiety etc.

jeanette2372

My thoughts for microbiome health are that we need to take care to, and be aware of, ingesting probiotics and prebiotics daily. The probiotics are the "seeds" of our intestinal garden, and the prebiotics are the "soil and fertiliser". The prebiotics would need to provide fibre as well as nutrients. Also drink plenty of water.

My source of daily probiotics are home made kefir, home made kombucha, and home made yogurt.

My sources of prebiotics are vegetables, berries, occasional other fruits, rolled oats, nuts, seeds, coconut oil, olive oil, butter, dessicated coconut, a small amount of wholemeal bread, fish, and a small amount of meat or eggs.

WinnieThePoo in reply to jeanette2372

That fits with my ideas. Eat lots of plants, preferably raw. I take probiotic supplements, eat homemade sauerkraut, yoghurt, kéfir, kombucha, cheese made with unpasteurised milk. We have banana, pineapple yoghurt a bit of granola and honey for breakfast 5days out of 7,salad and fresh fruit for lunch 5 days out of 7,and in the summer barbecue meat or fish, salads, grated carrot in French dressing, grated celeriac in mayonnaise, barbecue courgette, red Bell pepper, or sweetcorn. I also recently have 2 tablespoons of flax seed flour mixed with fruit flavoured kéfir. (be careful if on sinemet. Flax seed is high in protein)

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jeanette2372 in reply to WinnieThePoo

Sounds wonderful! 🙂👍

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WinnieThePoo

I originally opted for gluten free but decided that although the new diet had produced apparent benefits in symptoms, I did not get obvious adverse reactions to lapsing and eating gluten, in the way a celiac would. It was more that avoiding gluten promoted healthy plant eating meals. I had friends to stay recently and lapsed the diet whilst they were here. The very obvious symptoms for Sue were a return to troubled nights, acting out dreams, mumbling and thrashing round in my sleep. Look at what we ate. Typically croissant and jam for breakfast, French stick and pate for lunch (forgot to pack fruit on picnic) , then pizza for dinner. The problem wasn't so much the gluten being eaten as the lack of any fibre and nutrients.

WinnieThePoo

OK - the long overdue PD story of WinnieThePoo. In July 2017 I had an ear infection in my left ear, which resulted in Eustachian Tube deficiency (ETD). I saw an ENT specialist in Montpellier, and another privately in Tunbridge Wells. The last appointment was in January 2018 by which time the condition had improved to the point where balloon surgery was deferred. It has, very slowly, continued to improve, and is mild now. During August/September 2017, as the initial treatment ended I noted no sense of smell. My Dad, who has PD, teased that I might have it too. We laughed. In November I finally allowed my UK GP to start me on 5mg a day of Amlodipine for my Blood Pressure of around 150/100 in the surgery. Almost immediately after, certainly in December 2017 I noticed a tremor in the pinkie of my left hand sometimes. My wife (now tells me) she noted a shaky hand (her Dad has PD too!!!!) . In January I told my French ENT guy about family PD and my shake and persistent loss of sense of smell, and he referred me to a neurologist in Carcassonne. In late January 2018 my Amlodipine dose was increased to 10mg per day. By March my tremor was less infrequent, and I was more aware of a general jerkiness, particularly at night. 15 March 2018 my neurologist carried out an examination, told me there was nothing wrong with my nerves regarding the sense of smell, which would return (recommended nasal rinses with honey added to the saline solution)

But you have Parkinsons disease. Cogwheel movement in left hand, reported tremor, masked face, probably you've noted micrographia (no) , bradkinesea (no). Oh, and your left arm swing is reduced. (In France, and french language PD posts, loss of sense of smell is unheard of. He looked it up, agreed it was a PD symptom, and changed his view of my sense of smell returning). I suggested Drug Induced Parkinsonism (DIP) due to the Amlodipine, and he dismissed it (correctly) but ordered a DATscan. Believing (after extensive research) it had to be DIP, I stopped Amlodipine and started rigourous daily exercise and an improved, Blood Pressure control diet.

2 days later was my birthday, and my children had arranged a surprise visit for a weekend skiing break with my wife. She broke cover (because I said I wanted to cancel all birthday plans, without knowing what they were). Kids arrived after midnight, and I struggled really really badly with shivering and jerking and couldn't warm up. So, in an attempt to avoid spoiling the weekend I stopped the Amlodipine. We skiied , but on the morning before we set off I had a really numb leg, and said I wasnt sure we should do it - it wore off, sufficiently by the time we got to the resort.

The next Monday, 5 days after diagnosis, I had a trip to the UK where I was stuck in the car at the channel tunnel, and again, with multiple layers, could not stop shivering. Over the next 2 weeks or so (there is quite a lot about a 2 week half life for Amlodipine) I had a series of PD symptoms (shaking arms one night, aching legs, numb curling toes another, sweats another). Sue's boys also visited, and we went to Montsegur castle. George grabbed my arm 5 times when I nearly stumbled - shaky arm - loss of control of legs (all fairly mild, but evident)

Prior to visiting the UK in June for my sons wedding, I wired up the newly built garage, and weedkillered the paths and drives. My left arm shake, go so bad from carrying a 5 litre spray bottle, that I had to put it down, and said to my wife "I won't be able to do this much longer". I wired the garage, but it was like a comedy show, trying to get a wobbling screwdriver bit to meet the screw. This was rock-bottom for me so far. Then I had the DATscan result just before going to the wedding - confirmed PD.

During the week before the wedding, I went full new diet. No gluten, low sugar, probiotics, and other supplements, and made a point of a vigorous walk every day, and kept up an exercise routine 4 mornings a week. The diet has evolved a bit (some gluten, more fruit, more probiotic foods) and the pattern has improved. In August, dismantling sheds, worked all day in the heat, same screwdriver bit, similar screws, no tremor. Ditto weedkilling the paths - no tremor. Solid improvement all the way up to last week, in the UK for 10 days where I did no exercise, and eased off the diet, and on Friday was shaking so badly in my left hand (and "cramping" in my left bicep) I thought I wasn't going to make it to the start of the trial without medication. Both hands shaking at times - impossible to hide it from my wife.

More later ...

WinnieThePoo

And grinding towards an eventual conclusion, I think this is a tale of 2 antibiotics. I am now 3 days back on the diet and walking the dogs vigorously, and doing the morning exercises , and (my wife insists I include this) - less stressed, and very nearly back to normal. I am touch typing this with both hands and can't force a pinkie tremor even holding down the shift key for ages with that finger and reaching for a 6 with my forefinger (one test I do). I have also been practicing guitar and typing as discussed - both exercises which consciously work the worst affected parts of me. In the bar last night, chatting with mates, I mentioned that I thought I was a jelly mess and would have to be on meds soon on Thursday and Friday, but was rock solid then (booze helps a bit) and was surprised how vigorously my wife endorsed that. I thought I was concealing it.

(The guitar playing produced a bit of a pinkie tremor on some stretches in the solo for "Songbird" by Eva Cassidy - but beautiful ones which looked like stunning vibrato, and not week and wobbly)

When I noticed improvements after my sons wedding week, on the diet and exercise, again my wife vigorously endorsed it. I had noticed the reduction in pain, and "odd feelings" in my arms and left leg. She noticed, as she put it, "you were back to your normal positive self. You had been depressed to the point I was going to insist on seeing a doctor, and SOOO grumpy". I deny it of course, but now she mentions it , I also noted that my cognition was back. I had been unable to get sentences out properly - big pauses, loss of thread, and slurred speach. I couldn't even think "Parkinsons Disease" without slurring it, never mind say it.

I remain supersticiously paranoid about jinxing anything by being smug about having made some progress in defeating or delaying or slowing the onset of PD - but at this stage that's what I have to report

Post now too long - tale of 2 antibiotics in the next post

WinnieThePoo

Get to the point Winnie! Antibiotics. I did tons of research on PD , DIP and Amlodipine, and found 2 genuine copper-bottomed cases prior to my DATscan. It couldn't be PD. It onset too quickly out of a clear blue sky. My Dad has it. My father in law has it. I thought statistically only so many people I know can have it. And, almost to the minute, it started when I started taking Amlodipine, got worse when the dose inceased from 5mg to 10mg, and I experienced a serious "cold turkey" fortnight when I stopped it. And after stopping it, some improvement - particularly regarding night tremors and leg wobbles. So maybe it was not DIP (since the scan was slam-dunk idiopathic PD) but the drug unmasking the underlying sub-clinical idiopathic PD?

Maybe, but I don't think so. Immediately prior to the symptoms starting, I had a weeks course of Amoxycillin for the ear infection, followed by Metronidazol (5 days) and then weeks of using a manosonic nebuliser to inhale steroids and antibiotics into my nasal cavity. Sure, I made a point of eating yoghurt every morning for a week afterwards - but really ...

The condition started when I totally screwed my microbiome. (I dont think my PD started then - there were symptoms before, and I didnt lose all those dopamine neurons overnight - I bloody hope). But the PD revealed itself then

The 2nd antibiotic? I maybe got lucky. My understanding is that a faecal transplant involves antibiotics to wipe out your existing gut bacteria (not viruses or fungi) and then the new poo with the right bacteria is stuffed in with an endoscope. Back in July one of my German Shepherds bit me (probably - might have been the dog it was fighting) and bit me properly on the leg. Tetanus combi injection, and, you guessed it, a weeks course of penicillin. Again. But this time I am on more than a Danone Bio for breakfast. By now I am on probiotic capsules, kefir, Kombucha, yes - yoghurt, homemade sauerkraut, loads of fruit and vegetables - the full monty. So not quite a faecal transplant, but a chance to grow my own microbiome from scratch

I think there is a smoking gun

ConnieD

I think you are right, may I ask what supplements you find beneficial? Thank you!

WinnieThePoo

Ah. That's like the old question about 98% of advertising being a waste of money. If only we knew which was the 98%. I take 10000mg Turmeric, Fish oil capsules (500mg EPA), vitamin D 5000iu, Vitamin C 1000mg, an activated vitamin B complex , Alpha Lipoic Acid 300mg and a multimineral supplement called Nature Min (also known as magic sheep recovery Aloe Vera). And 2 6 probiotic supplement capsules every day for now. I plan to rest these a week, and take a different mix after that. For diversity.

I have taken Vitamin C for years. Also I drink an Aloe Vera gel every day - but again have done so for 20 years (lifelong psoriasis stopped when I started the gel, and whilst that might have been coincidence I haven't mustered the courage to stop taking it). The Nature Min is from the same company, and got its nickname when I had a sheep with bad fly-strike looking dead and collapsed. Vets inject them with zinc, but I couldn't get a vet out in time. I propped it up on a straw bale, ground up some nature min and mixed them in a babies bottle with water and spent 3 hours dripping this into the sheep. After which it got up and lived heavily ever after, and I acquired witch doctor status.

Vitamin D - I had a blood test immediately after my diagnosis (to check whether I still had sky-high cholesterol, and could ask my GP for Simvastatin - in stage 3 trial for slowing PD progression). It showed vitamin D levels at 20.8ng/ml and my French GP suggested supplementing to get it over 45. This was June and I am overdue another blood test. Low vitamin D is often associated with PD. I live in the South of France and sunbathe quite a bit, so wouldn't normally expect such low vitamin D levels.

Vitamin B complex - there was a research article about B12 inhibiting the progress of PD, and a lot of stuff generally about B vitamins. And of course, here I have learned of Dr C and Thiamine, and duly have a knot tied in my hanky to investigate, if my PD deteriorates significantly

I recently ( yesterday) acquired a prebiotic chewable supplement, which was on back-order from when I had the dog bite antibiotics, but I plan to chew my way through them now I've got them. However, supplements are no substitute for food (including fermented foods)

I may well drop the Alpha Lipoic acid (for no particularly good reason)

ConnieD in reply to WinnieThePoo

Thanks for all the great info, what exactly did you give your sheep? Zinc? Interesting too about the aloe Vera gel. I don’t have psoriasis but other relatives have and although I’ve heard of aloe Vera creams, I didn’t realize you could drink it too!

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WinnieThePoo

I gave the sheep "Nature Min" which is a multimineral containing (among others) zinc and magnesium. The Aloe Vera experience may be coincidence, but I had psoriasis on my hands ,arms and head mostly from age 7 to age about 35 - with a few real flareups but mostly just "red hands". I started drinking the gel because I was supporting my (then) wife who was looking to be a distributor, and also used the hand cream (they do a propolis creme). My psoriasis gradually cleared up and has never come back and I just havent the courage to find out what happens if I stop taking it. Maybe it was coincidence and I grew out of it.