[Conductor71]

My take on Parkinson's with research and scientists that substantiate my ideas- this is super long but all is relevant. If this is even remotely on target then the medical community has failed us big time.

Is there really an Idiopathic Parkinson's Disease? The very word means of spontaneous unknown origin. I am going to propose an idea I wanted to substantiate. I don't believe there is such a thing as Idiopathic Parkinson Disease. Patients already express this though living it; there is no one elusive, mysterious, spontaneous cause for PD. We all manifest and experience it differently because we have different pathways and triggers.

What doctors label as IPD really begins as a reaction to a brain trauma; that trauma can be from infection, a toxin, or genetic (think mitochondrial dysfunction). That reaction starts as an immune defense but for unknown reasons cannot be switched off. It's target may be long gone but left in its place are T1 cells that induce apoptosis or programmed cell death on your brain's own healthy neurons due to a case of cellular misidentity. If caught early, the process can be stopped or even reversed, but if left unchecked becomes pathogenic. That process and our inability to stop it results in what our neurologists label as Idiopathic PD. If we look at PD in this way; it highlights even more how deficit our current treatments and strategies are for starters and should serve as impetus for sea change in our diagnosis, therapies and quality of life. Right now we are offered nothing other than platitudes and a pat on the back because in labeling us with an idiopathic disease, doctors can wash their hands of us. They get a lot of financial return from watching us tap our fingers and walk in the hall every six months.

Whoa, this sounds way too simplistic to be viable, yet there are newer sporadic cases of an old PD spectre that keep tapping me on the shoulder, letting me know that viral Parkinsonism can easily become Idiopathic PD when the infectious phase is long over. We have all heard of the deadly flu pandemic of 1918 that killed millions and left at least 60 survivors with a strange Encephalopathy Lethargica or Sleeping Sickness. Some 60 or so survivors later awoke to Parkinson's (hence the book "Awakenings").

Fast forward. Twenty new cases of that same Lethargica virus are reported in 2003. Parkinsonism still makes an appearance post infection in all cases. Here is how things played out:

Ten patients had a monophasic illness, seven had a relapsing polyphasic course, two had static disease and one had progressive disease until death. After a mean follow‐up of 5 months (range 2–14 months), only five patients have made a complete recovery to date. Of the 15 patients with continuing impairments, six have a persisting movement disorder and ten have a disabling neuropsychiatric disturbance (one patient has both movement and psychiatric disorders).

Only five people made a complete recovery! The rest still have Parkinsonsim to varying degrees.

Another flu strain link:

A young woman just 22 years old enters the hospital with a severe case of the 2009 H1N1 strain and emerges with a unilateral resting tremor and masked face with no change after six months time. This is the first reported case of Parkinson's with the H1N1 scare. It's also noted that the H1N1 is a variant or strain of the Lethargica virus. No one has bothered to test this poor young woman for anti-bodies of any variety. Welcome to the world of PD, my friend.

It is apparently controversial or taboo to assert that PD is auto immune by linking the 1918 flu strain as a causative for Parkinson's because an effort was made to find that Influenza RNA in survivors and all tested negative. Further studies have shown that Parkinson's patients today test negative for significant flu RNA negating the idea that PD begins for some as an auto-immune reaction to a viral infection. Yet, this also ignores the fact that many viruses have a Hit and Run effect in our nervous system. It primes for disease; a second flu bout or infection or an exposure to a neurotoxin or a traumatic emotional event and we arrive at what doctors call Idiopathic Parkinson's.

On the other hand, animal studies show that the influenza virus can prime our brains for Parkinson's by causing alpha-synuclein aggregation. The case studies showing "hyperactive" grey matter in 40% of the Letharagica brains show this happens in humans, but no one is taking the next step to see if they indeed have this alpha-synuclein formation as well.

Yet, no RNA de facto means no definitive link between the two despite elimination of any other causative factor. Look at the stats and the clinical outcome of the contemporary cases: only 65% have strep virus RNA that "prove" the Parkinsonism is an auto-immune reaction, while 95% exhibit cardinal signs of PD. So how do we explain the discrepancy? Clearly in the majority of cases, auto-immunity is key. So why is the idea that PD may be an auto-immune expression so taboo or controversial?

[Conductor71]

Wait, there is more….

Note that the Lethargica cases had the step virus as a trigger event. This is scary because that virus is ubiquitous. The very common streptococcus virus that causes teachers and students to miss school that appears so readily is nearly as common as the cold. What researchers and doctors are just beginning to discover is that the brain trauma results in Movement and Psychiatric Disorders in many children. The most common outcome is Chorea accompanied by Obsessive Compulsive Disorder. It is clinically indistinguishable from the Idiopathic forms; the only difference is that with the viral induced version, your child changes over night. It is highly treatable and reversible if caught early on, yet we do not know how this changes the brain or makes it more vulnerable to adult onset neurological problems. Oh, the alarming part is that the basal ganglia is again the target; children who experience this have anti basal ganglia antibodies. There is also now a recorded case of a young man at 15 presenting with a sudden, severe Parkinsonism that emerged after a bout with strep throat. He deteriorated rapidly over the course of a few days, yet he fully recovered because doctors knew to treat him with a course of steroids. There are several other sporadic non-related cases of Autoimmune Parkinsonism as secondary to Hashimoto's Thyroiditis and Hypothalamic Disorders; these too reversed with steroid therapy. What is key is that Parksonism manifested at some point as a sidekick to a primary auto immune disorder.

What these cases all share in common besides a viral component is that they clearly show that Parkinson's can be readily explained, and in some cases readily treated with steroids. It is not necessarily a mysterious, dark, inexplicable sporadic disease that has its own unique etiology and outcome. To me it proves that what we call Parkinson's Disease may in many cases really be an autoimmune reaction to brain trauma; it is a messenger. I think that it seems to mark a crossroads of sorts for us to either heal and recover from a brain trauma or to end up somewhere on a spectrum of neurodegenerative disease. Haven't many of us expressed this very same thing here? How it seemed PD was our system's way of reacting to chronic stress and suppressed negative emotion; that the symptoms were telling us, hey, slow it down, stop what you are doing. It may start as an auto-immune reaction to infection, but how it plays out is not entirely up to us. Sure we can push it toward the pathogenic with stress, but I would say that genetics and other factors (like whether this is the first brain insult) make a huge difference.

In the streptococcus cases experienced by children; while Chorea is the most common movement disorder, others end up with Parkinsonsim, Dystonia, Tics, Blephospasm. In other words, a full range of disorders featuring he basal ganglia, not surprisingly the area of the brain associated with all these things and the one that results in antibodies. I mention this because I ran across an author who said that something is definitely auto-immune in origin if it is expressed in a spectrum. That means the person with anti basal antibodies can experience the full range of movement disorders (in varying degrees) connected with that center of the brain. Researchers are now noting that Essential Tremor and tremor-dominant PD are actually not separate conditions, but a spectrum. Could this be why so many of us experience dystonia? We may not be experiencing dystonia secondary to our condition, but actual dopa-responsive dystonia. This idea of auto-immune spectrum disorder also explains our wide variation in tremor, what we now call PD subtypes may instead be spectrum disorder; think of all our other "atypical" symptoms that no one can explain? Think of how many of us present with atypical tremor not fitting either the ET or PD mold? I feel this only further supports that basal ganglia disorders may in large part be auto-immune in origin because they seem to show up the most as secondary symptoms to other primary infections (pyramidal) damaging the brain. From what I have read auto-immune disorders tend to stick together. This for me explains why Parkinsonism shows up so regularly as a reaction to or along with many other immune based illnesses. This is why it shows in such a cross section of people from children to elderly only then later to become disease when it becomes chronic. I have never bought that PD is a disease of aging. In the literature teenagers are experiencing what to anyone would like IPD. Again, it shows how Parkinson's is a unique cluster of symptoms in reaction to brain insult which can then turn pathologic and chronic becoming a disease.

I think this is important enough to analyze and explore in great detail because it seems to answer a lot of things that don't make sense, maybe it does so too easily. If I can sit down and start with a rather simplistic hypothesis that there is no real idiopathic PD and find that several scientists are essentially saying the same thing and offering proof in the form of case studies, anti-bodies, and other substantiating research, then something is rotten in the state of Denmark , as the saying goes.

Let's not forget that h. pylori, a bacterial infection in the intestines, is not only responsible for peptic ulcers but serves to clear up most of the symptoms of people who supposedly have idiopathic PD and in some cases clear it completely. In addition, the pylori can be linked to changing sub-types in PD. Well, here is more evidence that researchers should be making use of post haste, but that again goes largely ignored.

Am I way off base here? Really over the top? Am I missing some key research that negates what I have tied together? Does anyone know if PDhas systematically been analyzed officially as an auto-immune disorder based on the standard 4 point criteria? If not, then why, it has not been done at this point nearly 100 years after the first strong correlation between influenza and PD?

Thanks for indulging me in this over the top long post.

Laura

[reverett123]

Laura-
If you have not already seen it, check out my blog entry on neuroinflammation

I think that you will find some interesting overlaps. -Rick

[krugen68]

Originally Posted by Conductor71

Wait, there is more….

Let's not forget that h. pylori, a bacterial infection in the intestines, is not only responsible for peptic ulcers but serves to clear up most of the symptoms of people who supposedly have idiopathic PD and in some cases clear it completely. In addition, the pylori can be linked to changing sub-types in PD. Well, here is more evidence that researchers should be making use of post haste, but that again goes largely ignored.

Am I way off base here? Really over the top? Am I missing some key research that negates what I have tied together? Does anyone know if PDhas systematically been analyzed officially as an auto-immune disorder based on the standard 4 point criteria? If not, then why, it has not been done at this point nearly 100 years after the first strong correlation between influenza and PD?

Thanks for indulging me in this over the top long post.

Laura

Having caught shigella dysentery in Africa years ago, followed later by a duodenal ulcer, then more recently an ongoing pilonidal abscess, I buy into your's and Reverett's thought process

[g.bothell@yahoo.com]

Parkinson's Regeneration:
I came down with Parkinson's in 2009. I went from comatose, to wheel chair, to walker and loss of balance to other movement disorders. Today I'm fine and have written down all my observations for the causes and cures of Parkinson's. Contact me at my for more information.

[lurkingforacure]

Originally Posted by g.bothell@yahoo.com

Parkinson's Regeneration:
I came down with Parkinson's in 2009. I went from comatose, to wheel chair, to walker and loss of balance to other movement disorders. Today I'm fine and have written down all my observations for the causes and cures of Parkinson's. Contact me at my for more information.

I would contact you, however, I am pretty sure you are going to be inundated with requests from members here asking for details of your history....so, instead of responding to them all individually, and to my request as well, would you humor me and post here on the forum how all of that happened? We would all be most grateful, and are very curious! Thanks in advance, lfac

[lurkingforacure]

We just got the results back from our extensive GI test, and among other things not too big of a deal, we have candida yeast as well as, yep, h. pylori. I know a good half the people on the planet have pylori, but did want to share that here's another PWP that also has pylori.

I know pylori doesn't cause PD or else everyone with pylori would also have PD....but I can't wonder if it might help set the stage....

[Conductor71]

Movement disorders associated with infection (updated 3/2012)

This applies to at least three threads that are active on the forum right now. Also Rick's very recent look at PD beginning in childhood and role of PANDAS.
and here with h. pylori.

Laura

[Conductor71]

Originally Posted by lurkingforacure

We just got the results back from our extensive GI test, and among other things not too big of a deal, we have candida yeast as well as, yep, h. pylori. I know a good half the people on the planet have pylori, but did want to share that here's another PWP that also has pylori.

I know pylori doesn't cause PD or else everyone with pylori would also have PD....but I can't wonder if it might help set the stage....

Wow, thanks for the update! There is a research clinic in the UK that believes that Parkinsonism can result from h. pylori infection. Plus there is solid research showing symptom improvement when the infection is treated. Here is the link to the group. They treat PD patients and I believe that Ron Hutton has been treated there.

http://www.whatsdrivingparkinsons.net/

See this article for an "update" on h. pylori - it looks like it steals cholesterol from people and messes with glucose levels. PWP are no stranger to hearing that glucose and cholesterol (lipids- ketotegenic diets) play a part in the disease process.

Bacteria 'linked' to Parkinson's disease.

It is dated 2011 but stands out for finding a possible link with cholesterol and glucose levels in the brain.

[lurkingforacure]

Originally Posted by Conductor71

Wow, thanks for the update! There is a research clinic in the UK that believes that Parkinsonism can result from h. pylori infection. Plus there is solid research showing symptom improvement when the infection is treated. Here is the link to the group. They treat PD patients and I believe that Ron Hutton has been treated there.

http://www.whatsdrivingparkinsons.net/

See this article for an "update" on h. pylori - it looks like it steals cholesterol from people and messes with glucose levels. PWP are no stranger to hearing that glucose and cholesterol (lipids- ketotegenic diets) play a part in the disease process.

Bacteria 'linked' to Parkinson's disease

It is dated 2011 but stands out for finding a possible link with cholesterol and glucose levels in the brain.

Laura, the link to this article does not work, can you provide more detail? Thanks, lfac