Parkinson's Disease Tulip


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Old 02-12-2011, 04:12 PM #21
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Confidence in faecal transplants would be increased or decreased if the following hypothesis could be proved or disproved.

Hypothesis: rather than Parkinson's causing constipation (as I'd always assumed), it is rather the case, that with the wrong bugs in the gut, Parkinson's and constipation reinforce one another: Parkinson's slows the transit time, leaving longer for toxins to build up, leading to a worsening of the Parkinson's, and so on.

If this hypothesis were correct, we would expect to find that:
- once the body has recovered from the stress of defecation, symptoms would fall to a minimum and then increase progressively until the next defecation. (It could be that the effect of years of damage swamp the short term effects);
- the probability distribution of the time between defecations is U-shaped. (The hypothesis would suggest that you have a period of reduced symptoms when the chances of going again are good, but if this opportunity is missed it gets harder and harder to go, until eventually the issue is forced.)

Has anyone got any data or references?

John
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Old 02-13-2011, 09:06 AM #22
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The following clinical trial, "Increased Gut Permeability to Lipopolysaccharides (LPS) in Parkinson's Disease", NCT01155492, due to report in June 2011, is of interest.

"Clinical and pathological data suggest Parkinson's disease (PD) may result from an inflammatory process beginning in the intestinal wall that initiates alpha-synuclein aggregation, which then spreads from neuron to neuron, reaching the central nervous system. Bacteria living within the intestinal tract produce lipopolysaccharide endotoxin, a toxin known to induce parkinsonism in animal models. We hypothesize that exposure to LPS, either from excessive production or excessive absorption may be the cause of this inflammation."

John
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Old 02-13-2011, 09:18 AM #23
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Default Some data

Discussion on this forum and elsewhere indicate that about 50% of us remember constipation as a childhood problem, a rather high number in my opinion. That can be "spun" to support either hypothesis I suppose. But there is no denying that there is a general improvement after a BM.

The recirculation of toxins is an obvious danger, but another is the introduction of partially digested proteins into areas of immuno-surveilence. This can lead to autoimmune problems since the small proteins can lead to cross reactions with our own tissues.

Constipation alone probably isn't enough. However, the addition of bacterial induced inflammation of the GI tract ala H pylori would alter things rapidly as it disrupted the barriers. H pylori protects itself from our stomach acid by a process that produces ammonia. Ammonia is normally cleaned up by the liver but if it gets overloaded then the ammonia moves through the bloodstream and reaches the BBB. Inflammation in this area would allow the breach of the BBB and the passage of the (deadly) ammonia.


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Originally Posted by johnt View Post
Confidence in faecal transplants would be increased or decreased if the following hypothesis could be proved or disproved.

Hypothesis: rather than Parkinson's causing constipation (as I'd always assumed), it is rather the case, that with the wrong bugs in the gut, Parkinson's and constipation reinforce one another: Parkinson's slows the transit time, leaving longer for toxins to build up, leading to a worsening of the Parkinson's, and so on.

If this hypothesis were correct, we would expect to find that:
- once the body has recovered from the stress of defecation, symptoms would fall to a minimum and then increase progressively until the next defecation. (It could be that the effect of years of damage swamp the short term effects);
- the probability distribution of the time between defecations is U-shaped. (The hypothesis would suggest that you have a period of reduced symptoms when the chances of going again are good, but if this opportunity is missed it gets harder and harder to go, until eventually the issue is forced.)

Has anyone got any data or references?

John
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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 02-14-2011, 02:11 AM #24
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Default Bowel probems beyond constipation

I've been following this thread with interest because I do think there is a gut-brain connection largely going ignored. There is plenty of lit supporting this but know one seems to be taking off with it.

I wondered if taking high colonics regularly along with regular OTC probiotics may help? I'd try that at least once before trying something like a fecal infusion. What scares me about that is we do not just have a bacterial problem confined to the colon; we have something that shows our blood brain barrier can be easily breached. Yes, we are wanting the good bacteria, but if you try this at home have that poop analyzed first, please.

Lastly in researching colonics and parkinson, I ran across a handful of cases where people with parkinson's presented with what was thought to be a bowel obstruction with nothing there but an enlarged bowel and dilated colon, but upon exam, there is no obstruction at all! It is known as an Intestinal Pseudo Bowel-Obstruction. It is brought on by the already slowed motility of our gastrointestinal system couple with the constipation caused by anticholinergic meds! BTW, in this researck.

Remember if you are taking Amantadine or any sort of anticholinergic drug or have amt sort of bowel issue or constipation you may first want to discuss all this with your doctor; there may be simple relief on the horizon.

Laura
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Old 02-14-2011, 03:21 PM #25
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I had my third portion of this go around in my chemo last Tuesday at the hospital and while there got to talk to a member of the staff who gave me the followinginformation as she knows it. The transplant research is in it's second or third study in Toronto and while not inclusive of Parkinson's still it is being discussed. That's all she knows but I see here that you are not taking full awareness of what this treatment ensues.

There is a definite danger of Pnemonia there and it should not be tried by anyone not under doctor care

The colon is completely cleaned and the misture is slush that is entered through the rectum and in my crude language sucked up into the very top of the colon by a specialist that ensures NONE of it enters the lungs.

You are playing with your lives here folks.
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Old 02-14-2011, 09:24 PM #26
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Thelma, thanks for the warning.

I don't think that any of the posts to this thread have advocated do it yourself faecal transplants (FT) for PD. Rather, the discussion has revolved around:

What evidence is there that FT is effective against PD? (As I see it, very limited.)

Could FT work? (As I see it, it is unlikely, but not impossible.)

Is FT an area that needs more attention? (As I see it, it does. This is because it appears to be a relatively neglected area and if it were to work, it could lead to cheap, effective therapies.)

There is, though, a scenario when I would consider a do it myself approach. That is, if all the following were true:
- if I was convinced of the effectiveness of an approach;
- if I understood the risks and these were worth taking;
- if the medical establishment were being unduely slow in offering this approach;
- if during the delay in the official adoption of the approach my condition could be expected to worsen considerably.
As I see it, given my current condition and understanding of FT, none of these conditions are met. So, I will not do a FT now, but I will continue to investigate the area.

John
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Old 02-15-2011, 09:01 AM #27
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Default It isn't necessarily "all or none"

A mental adjustment is needed on this one.

If this is, indeed, some sort of miracle that is as simple as it seems, then the real problem for researchers at this stage is how to repackage it to protect the existing apple carts. One way to do it is to shift away from the au naturel idea of simply loading oneself with probiotcs. Simply by doing nothing the cheap and safe and already available approach is relegated to the "unproven" category and the FDA keeps it there.

Meanwhile, another approach with "purified bacterial strains" introduced by medical professionals after a round of antibiotics is rushed to market.

So the "authorities" are going to control the discussions by controlling the questions and it is going to look the same from the outside.

If, however, we are not fooled by the "Great Oz" then there are some questions within our own reach. And with just a little common sense they should be far safer than what we are taking now. For example-

1) What if I gradually increase the dosing of the probiotic that I am taking? Say, ten-fold? With out adding in an antibiotic? Will the proper flora have an innate advantage and thus boot out the overgrowth of their less welcome cousins?

2) Oral application requires that the acidic gauntlet be run. May not be a problem or then again it might. Enemas are the obvious alternative, but what about a beeswax suppository with liberal quantities of commercial probiotics?

And while we are talking about the seamier side of life, nasal spray isn't the only show in town as an alternative application.

3) What about simply using one of these methods to maintain optimum nutrition for our gut? Crush a multivitamin and roll it into a beeswax pellet?

It is seldom that a genuine option like this falls into our laps. You can bet that, if it is indeed a "miracle", that there will be steps taken to send it all to the "vanished promise" locker where such things are hidden away.

-Rick
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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 02-15-2011, 11:47 AM #28
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I am wondering if it is possible to persuade more friendly bacteria to stay in the get by doing a cleansing enema and then introducing a good liquid probiotic into the colon by way of enema and holding this as long as possible....it is worth a try. I have suffered alot from constipation ever since my diving accident in 7th grade (when my foot turning fist appeared) seems it has been my lot ever since. I for one am goiing to try this and will let you know if there is any noticable change for me.
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Old 02-16-2011, 09:24 PM #29
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I'm still in due diligence mode regarding faecal transplants (FT). To that end I've been looking at defecation frequency.

I've argued in a previous post in this thread that circumstantial evidence (NOT PROOF) in favour of FT would be if a person had a U-shaped probability distribution of the length of time between defecations.

(The argument goes as follows, FT would make most sense if an individual's PD [the stress is on "individual"; there may be many causes] was caused by an ongoing release of toxins from the gut. One would expect toxin levels to be at a minimum following defecation, and to increase until the next one; this would cause PD symptoms to go from a minimum to a maximum, but one of these symptoms is a slowing of the transit time; so you would have a window of opportunity to defecate relatively normally before the PD hit in, otherwise things would slow down, harden, with the next defecation being delayed until pressure builds up. Thus, and this is the U-shape, there would be a period of high probability of defecation, followed by a period of low probability, followed by a period of high probability.

Since my diagnosis in 2005 I've collected PD relevant data, including between 2006 and 2009 defecation data. ( I gave up collecting defecation data because I was worried about becoming anally retentive [!!!].) Things are complicated by changes in medication, both directly for constipation and for PD. So, I've chosen a period between January and August 2006 when I was on neither.

The frequencies of the length of time in days between defecations are:
[0,1) 23
[1,2) 45
[2,3) 16
[3,4) 24
[4,5) 3
[5,6) 3

where [x,y) means the interval between x days and just short of y days.

I take this as being consistent with a U-shaped distribution and, hence, FT. However, I repeat, THIS IS NOT PROOF: there are many other ways to explain the distribution.

Does anyone else have data?

John
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Old 02-17-2011, 09:38 AM #30
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In Eastern traditions there is the ancient idea of the chakras - dense clusters of nerve tissue at seven places along the spinal cord from the crown of the skull to the peritoneum or "straddle" in Western medicine (West Texas, anyway). This last one is known as the "root" chakra and it is, evolutionarily speaking, considered to be the control center of the most basic survival drives. The second chakra up the chain corresponds to the genitals and is almost as powerful.

So we can see that this area "hosts" two of the most powerful nerve complexes of our body. Not only do you have the basic survival and reproductive drives, there is also all that "ju-ju" that Freud and Jung touched on. In a sense, your entire being rests on this foundation.

It would be incredibly silly to say that this all has nothing to do with PD. The effect is probably found on both micro and macro levels. I will give one example that I have noticed repeatedly-

Though "slow" my GI tract still works, albeit at its own pace. When it signals "time" it is hard to ignore. But this signal often comes at a time in the med cycle when things are stuck in a waiting pattern at all levels from walking to head scratching.

However, if the GI tract is demanding attention during all this and I do somehow make it to the loo, something amazing happens, and it does so almost every time. After the grunting and groaning have died away into silence, I find that I am completely on! This morning was typical in that I had been up and frustrated for five hours when nature would no longer be denied. Five minutes later I emerged a new man.

Again, this is the normal pattern. Something gets stimulated by the uproar? Is there something major here just under our noses? I won't go any further, but this is no coincidence.
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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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