Parkinson's Disease Tulip


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Old 11-14-2012, 06:51 PM #1
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Default Pediatric PD in PsychCentral Newsletter?

Just got Doc John's current newsletter and found it very interesting. The cover story is entitled "When Infection Triggers OCD" written by Marla W. Deibler Psyd. It is about PANDAS which I had heard of before but without paying much attention to. This time, however, I did and I was surprised to recognize some of the things we have discussed on this forum. It is almost as though PANDAS is a pediatric form of PD. In the following discussion I am going to use "MWD" to credit Dr. Deibler and "MOB" to credit "A Matter of Balance", a blog which I use to talk about this mess. Anything uncredited is present day ramblings.

First, from MOB is a quick summary-
"
A Brief Overview of PD
March 8, 2011

First, a bit of cold, hard truth – despite 200 years of trying, we know darned little about Parkinson’s Disease (PD). And despite a steady flow of optimistic press releases about miracles that are almost always five years away, the situation isn’t changing much. Modern medicine knows neither cause, course, nor cure for PD.

But modern medicine is not the same thing as modern science and science, in the form of accumulated research, knows a great deal about PD – maybe just enough. A mountain of data has accumulated over the last fifty years and most of it has been filed away awaiting another researcher. It certainly has not found its way to the office of the local neurologist as any person with Parkinson’s (PWP) who is paying attention can tell you.

And PWP are paying attention and even figuring out things on their own. The Net has allowed them to communicate with one another and given them access to that mountain of data. They are taking advantage of that to sift through the dusty attic of science and they are learning things that have been forgotten or ignored. Things that challenge the way that things are done and how money is spent. Things that point up the gaping holes in the official view of PD as a mix of genes and environment that just needs the right pill to be cured.

Some of those things include_
1. One can give a rat PD by giving him influenza.
2. One can give a rat PD by exposing him as a fetus to bacterial infection.
3. An adult human can develop Parkinson’s – like symptoms from exposure to certain bacterial toxins.
4. These all create an ongoing immune response by the microglia in the brain.
5. This response, once established, is persistent and has many triggers.
6. Pollutants, toxins, and chronic stress are just a few of those triggers.
7. The ongoing immune response itself triggers a parallel stress response from the endocrine system.
8. The immune response utilizes chemical cytokines. The stress response on the part of the endocrine system utilizes chemical hormones. Both are neuroactive and affect mental function and account for many of the non-motor aspects of PD.
9. Chronic exposure to either of these chemicals can be destructive to the nervous system.
10. One area where this destruction is particularly evident is the substantia nigra. This seems to be the source of the motor symptoms that go with PD.
11. Finally, a slowed GI system can result from the endocrine and immune responses. The general inflammatory state increases the permeability of the protective barriers and result in “leaky gut” which can not only add to the toxins in the system but can also result in autoimmune problems.
12. The same inflammation can weaken the blood brain barrier as well and allow toxins to cross into the brain itself.

These points, all of which are supported by research, define a process that begins with the immune system and then draws in the endocrine and GI systems and ultimately afflicting the CNS. This is just the beginning and simply serves to illustrate that there is much to be added to the picture. That is our goal, in a sense – to put as many pieces of the puzzle on the table as possible in hopes that the solution will emerge."

-------------
Now to the newsletter (emphasis mine)--

"
When Infection Triggers OCD
By Marla W. Deibler, PsyD

In 1998, Dr. Susan Swedo, a researcher at NIMH, first described in the scientific literature a subtype of OCD in which children demonstrated an abrupt onset of neuropsychiatric symptoms (OCD, tics, ADHD-like symptoms, anxiety) with a “saw-toothed” course, preceded by streptococcal infection. This syndrome was termed PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In PANDAS, the body’s immune system is over-reactive to strep bacteria, leading to psychiatric and neurological symptoms.

--

There is strong evidence to support the immune system’s over-reactivity to bacterial infections, resulting in the production of neurological and behavioral symptoms. However, what exactly triggers symptoms in this subset of children with OCD remains unclear and may extend beyond group A streptococci to other infectious agents (Lyme, mycoplasma), environmental, or metabolic factors. In 2012, this syndrome’s description has been expanded to include these other potential triggers and has been named PANS, Pediatric Acute-onset Neuropsychiatric Syndrome. Proposed diagnostic criteria include:

Abrupt, dramatic onset of OCD or severely restricted food intake
Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following:
Anxiety
Emotional lability and/or depression
Irritability, aggression, and/or severe oppositional behaviors
Behavioral (developmental) regression
Deterioration in school performance
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency

Symptoms are not better explained by a known neurological or medical disorder, such as Sydenham chorea, systematic lupus erythematosus, Tourette’s disorder or others"

--
So, while not a twin, it makes me wonder if there is a junior sibling there linked to us via a hypervigilant immune response.
__________________
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 11-15-2012, 02:45 AM #2
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PANDAS are becoming more known as kids are increasingly diagnosed with them. I believe the "classic" behavioral change is a sudden onset of OCD. From what I have read, it is reversible if caught and treated in time. It is usually associated with strep throat infections which are near ubiquitous. Interestingly, as an aside there is a curious "outbreak" of encephalitis lethargica with a Parkinsonism chaser that is documented in Gr. Britain a few years ago. About 20 adults were reported. Here is a lay quick read of what went down.

http://news.bbc.co.uk/2/hi/health/3930727.stm

Laura
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Old 11-15-2012, 12:52 PM #3
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I find this bacterial link so fascinating. I was often sick as a child with countless ear infections, strep throat, flus, etc. I also had mononucleosis (which is viral not bacterial). I always wonder if there was some link between these illnesses and a later diagnosis of PD - due to the inflammation or just hits to the immune system.
Another thing I wanted to bring up was the effect the antibiotics may have.
Rounds and rounds of antibiotics must cause these bacteria to mutate beyond what may already be known, causing more inflammation and compromising the immune system further.
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Old 11-15-2012, 02:45 PM #4
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Default Singing the same tune...

Quote:
Originally Posted by anagirl View Post
I find this bacterial link so fascinating. I was often sick as a child with countless ear infections, strep throat, flus, etc. I also had mononucleosis (which is viral not bacterial). I always wonder if there was some link between these illnesses and a later diagnosis of PD - due to the inflammation or just hits to the immune system.
Another thing I wanted to bring up was the effect the antibiotics may have.
Rounds and rounds of antibiotics must cause these bacteria to mutate beyond what may already be known, causing more inflammation and compromising the immune system further.
Hi,

I too seemed to get every thing: Mumps, Chicken Pox, Walking Pneumonia, and later exposure to Mono with an utero exposure to German Measles. Some PD people have a positive response to antibiotics or antibacs; interestingly many of us (including me) respond to Amantadine which happens to be an anti-viral.

I find it really interesting too that one of the newer theories on autism centers on fever as bringing about improvement in kids with disorder. That is really intriguing...only if we could "sweat out" PD. :P

Laura
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Old 11-15-2012, 03:01 PM #5
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Ok, let's all get ourselves to the steam room!
I had german measles as a child too - and chicken pox. Very interesting about the fever autism link. Perhaps some people with PD are fighting off low level infections for years. I'm sure vaccinations don't help either. Maybe this is why low dose naltrexone works so well for some.
Last week I was reading up on links between root canals and diseases - the thought being that the bacteria go into the tubules of the dead tooth and mutate even without a blood supply, and then leak out into your body and cause various disease.
I've had at least two root canals, one as a child and one two years ago. Well, I got myself so wound up by what I was reading that I made an appointment with my endodontist who performed my root canal two years ago. I went in to see him and he did a dental CT scan and discovered a huge abscess on the tooth which had the root canal. He said it had probably been there for two years! I didn't have any tooth pain. Ack!!! He drained it (sorry that's gross) and gave me antibiotics and within a couple days I was feeling like I had more energy and instead of feeling like I have 10 pound weights attached to my arms, it now feels like I have 5 pound weights! A little improvement.
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