Did anyone try to find the cause of your PD by yourself?

Just FYI, I asked my GP to get me tested for HP in 2010 after doing a bit of reading online. He was quite happy to do so. I was negative. I had no HP symptoms and it was four years from onset of PD symptoms.

Thanks for all the interesting reading you've provided.

Do you know of any research into PD and stress? I don't know if such research could even be possible. Stress is a possible factor that I personally keep coming back to.
chemistry is definitely [u]not[/u] something i am comfortable with but from wikip on hemoglobin (which is uses iron to transport oxygen)

Hemoglobin is also found outside red blood cells and their progenitor lines. Other cells that contain hemoglobin include the A9 dopaminergic neurons in the substantia nigra, macrophages, alveolar cells, and mesangial cells in the kidney. In these tissues, hemoglobin has a non-oxygen-carrying function as an antioxidant and a regulator of iron metabolism.

Back to oxygen! the +2 and +3 are to do, i think, with ions and how much oxygen will bind to the iron.

also i think macrophages (microglia is the CNS sun-type) are what actually kill off damaged cells.
http://integrativehealthconnection.com/wp-content/uploads/2011/11/Iron-in-the-basal-ganglia-in-Parkinsons-disease-An-in-vitro-study-using-extended-X-ray-absorption-fine-structure-and-cryo-electron-microscopy.pdf

a bit old but interesting
http://www.hindawi.com/journals/aps/2011/378278/

everything you wanted to know about iron in the brain and more.
Hi Jeanine,

Thanks for sharing the info on HP and for the nice comment. I'm myself unsure about HP as I did test positive for it 12 years ago, but then negative 6 months ago... though I find myself wondering about the apparent 98% reliability of the last test I did, which leaves a 2% chance that I still have HP :-)

I haven't come across much that is very clear on stress and PD. The key things I've found are:

1. Stress seems to raise dopamine levels in various parts of the brain (not just
the part concerned by PD, apparently). One rodent study concluded that
"[...] stress increased extracellular dopamine relative to baseline by
25% in striatum, 39% in nucleus accumbens, and 95% in medial frontal cortex"
(the study is: Differential Effect of Stress on In Vivo Dopamine Release in
Striatum, Nucleus Accumbens, and Medial Frontal Cortex; 2006). I read
elsewhere that dopamine is also used by our brain to increase adrenaline, so
I guess the theory is that stress increases dopamine so it can increase
adrenaline, which is used to manage basic "fight or flight" reactions.

2. Too high or too persistent stress seems to mess-up things. Another rodent
study says that "[the normal dopaminergic function] can show significant
deficits in both the first expression or exacerbation of many neurological
and psychiatric disorders following stress." Though I personally don't
understand what is the mechanism behind that. The study is
"The role of stress in the pathophysiology of the dopaminergic system", 2000.

I also read everywhere that stress worsens the tremor symptoms of PD (and feel it myself). But I guess this is nothing you to the average reader of this post :-)

On a more practical side, the only thing I did on stress was to follow the advice of someone I know and read a few books about stuff that it's more important in life. I confess that despite being a little skeptical in terms of "self-help" books, I did think these books I read made a difference in my ability to handle stress... maybe I was just more motivated to do something about it now :-)


Hi Turnip,

Thanks a lot for the great info & links. I had a quick look at the studies and I'll need to read them a few times to make sure I get what they are saying. My initial understanding is as follows:

1. The older study seems to say that folks with PD folks (when dead) have
ferritine molecules in the PD-relevant areas of the brain that are more
heavily loaded with iron than folks without PD. This seems to make ferritine
the key indicator that goes wrong with PD. Unfortunatelly, they also say
they can't tell if this extra iron is too the ferrous iron (Fe2+) kind or the
toxic ferric iron (Fe3+) kind.

2. The more recent study seems to say that abnormal iron accumulation is driven
by the loss of dopaminic cells, which happens as PD progresses. Which is
interesting, because it sounds more like a consequence than a cause.

I'll definatelly read these in more detail. Thanks again for sharing them and warm regards to all,

lfs
the second one is heavy going but the relevant part is near the end.
one intersting thing is that the body convert fe2 to fe3 and back again half a dozen times.
i will have to read it again but i think the main thrust was that excess iron and alauminium cause free radicals which cause damage and that chelation would be very useful but most of the current drugs would do you great harm as well.
Naturopathic doctors can do or arrange blood and urine tests to check your absorption and concentration of vital 'ingredients' that make the body and brain function properly.I had a battery of tests done and my current regime of supplements is based on the results. My GP had to write a letter supporting me getting the blood taken privately but that wasnt a problem. The tests cost about £500 unfortunately.
to me there are problems with just taking more or less of a substance, such as iron for example. the brain and the body have different balancing systems. it is possible to have a lack of iron generally, and too much iron localised in one area like the basal ganglia. if the problem is with the local system hidden deep in the brain, measuring blood and urine may be misleading. its a bit like puting a thermostat in the garage to deal with overheating in the loft. also increasing iron (or any other ingredient) in the body as a whole to deal with a defecit in the brain may cause damage to other organs (eg too much iron may cause heart attacks.
an obvious example is a lack of dopamine in the brain.we digest l-dopa but that causes havoc with other systems that use dopamine so we have to take other substances with it to stop it being used in the body.
to me it is unlikely to be too much or too little of a substance in the cupboard but how it is used by the cellular 'cooks' in the brain who add to much or to little to the recipe.
as usual, i have the caveat that all the above may well be total rubbish.
todays Daily Mail

http://www.dailymail.co.uk/health/article-2110667/Iron-poisoning-I-blamed-tiredness-aching-joints-lack-energy-mum.html
my cousin has that disease - did make me wonder about a link with pd, ie a genetic problem with iron expressing itself in two different ways.
Hi Sallymac,

Thanks for the good suggestion. I'm not sure I know what exactly a "naturopathic " is, but I started seing a "nutricionist" doctor a couple of weeks ago which seems to not be similar: prescribed me a huge batery of urine and blood tests (which apparently don't come cheap - though I haven't seen the bill just yet) to check absorption and vital 'ingredients'. I have a follow-up meeting with him in a couple of weeks.

Hi Turnip and Krugen68,

I confess I'm still a little puzzled on this iron and ferritin thing too.

Too much iron in the blood clearly seems to create lots of problems, but I haven't seen a clear link to PD yet either. True, as the study above says, dead folks with PD had lots of iron in their brains, but it's not clear to me that one drives the other. To me, it sounded like the excess iron found in dead folks with PD was created from them having too low dopamine activity and not because they were eating too much of an iron-rich diet or having some sort of genetic condition that made them build up too much iron in their blood.

Too much ferritine in the blood seems to boil down to mean that it's either because of too much iron (back to the above point) or infection/inflamation, which can apparently be linked to PD (as it seems to destroy neurons).

The link between too little iron (or too little ferritin) and PD seems more obvious to me... but nobody seems to worry too much about that one.

I confess I don't fully understand the purpose of iron chellation. If my logic above is correct, then can't see how it can help solve the dopamine problem... but then again, maybe it doesn't and it "just" mitigates the bad side effects of having too little dopamine... which would already very good, of course. Anyway, I did notice that some researchers are very enthusiastic on iron chellation and they surely understand this a lot better than me.

One last point. I fully agree with Turnip that we can't just think that by increasing element x in our blood we are going to increase it in the brain. I guess my logic really is the other way around. If I find that I have a deficiency of x in the blood (or in an organ) maybe that's driving some problem in the brain that is causing PD and so, if I can fix it that problem then maybe it will reduce the PD problem. So, it's about correcting problems, not getting overloaded with stuff in the hope it may help the brain correct PD... with the only exception of anti-oxydants (like CoQ10, Vit E, and Vit C) where I do go a bit for the "overload" approach in the hope they'll have a protective rule (though I'm starting to reduce doses of Vit E as woried that too much may have bad effects).

BRs,

lfs
Hello,

Just thought it may be interesting to provide a brief update on where I am on my search for the cause of my PD and a couple of other things I don’t think I have mentioned already:

1. Earlier this week I went through a colonoscopy. Initial feedback from the doctor (before biopsy results) is that nor problems were detected. This is a big relief from the point-of-view that nothing seems to be wrong... but it doesn’t help much with finding the possible causes of my PD. Something wrong at the gastro-intestinal level was my #1 hypothesis to explain my presumption of infection and low iron. Not anymore. I’m still going to wait for the bioscopie results before I totally put it aside, but it seems I should start looking elsewhere. Also note that I did a gastroscopy a few months ago and it didn’t detect anything either.

2. On the subject of infection and low-iron, I’m even more perplexed than a few days ago. As I mentioned a few times, my previous blood tests while not totally conclusive were consistent with low iron levels and infection. But I just got the results of my latest blood test from last week and both iron and ferritin levels were normal. In addition, one of the indicators that I had consistently low for the past 15 years (MCV – which when low is also consistent with low iron), was now normal. I still had a few out-of-norm results that are consistent with infection, but the number of infection-related “flags” seems to be reduced when compared with the previous tests. I have no idea if this is just a outlier test result or if something changed (will re-test in a month or so to make sure). And if really real, why, nor if there is there’s any link with PD.

3. One thing I don’t think I had mention before - and while perhaps a long shot, may be interesting to some of you - is that I’ve started taking Actimel daily (Danone’s liquid youghourt) a couple of months ago. The reason for this is that I was told by my gastro-enterologue that it’s one of the few easy ways to change one’s intestinal flora (and I was concerned that my intestinal flora may be the causing malabsorption problems). I have no idea if this works or not… but just thought I’d share the thought just in case there’s something in it. FYI, I was told that both Activia and Actimel seem to have the same effect. I also read somewhere that other unbranded youghourts can do the same, but I just don’t understand that stuff well enough to tell. In any case, one Actimel per day, if nothing else, seems to help my gastro-intestinal system work in a way that seems more normal to me. So, I'm happy with it so far.

4. One other “long shot” I don’t think I mentioned before is cyanotoxins. As I went through the study on helicobacter pylori referred to by krugen68 a couple of weeks back, I learned that the study authors inspired themselves in these people in Guan which got a huge prevalence of a PD-like disease believed to originate from a local seed which itself contained a toxin produced by something called cyanobacteria. This cyanobacteria is apparently pretty much everywhere, but mainly so in stagnant water – thus it’s other name of “blue-green algae”. There’s apparently some controversy on whether this bacteria can really cause PD (I’ve seen a least on study that makes a convincing case, but some others argue against it) but in any case nobody disputes that the stuff can be extremely toxicity and clearly has the potential to create major liver problems (a high exposure to the most dangerous variants apparently totally destroys the liver in days). Humans don’t often get infected with this stuff from drinking from infected ponds because the stuff doesn’t look that appealing any way, but it has happened. Also, it is apparently quite prevalent in fish tanks. And some fish tank owners (like myself) tend to do the regular water changes of the tank by sucking into a hose to get the syphoning going. I personally still recall the taste of that water, so if there was any bacteria in there, I’m sure I got a fair quantity of it (and I changed the water of that tank roughly every 2 months or so for the past 6 ot 7 years). There’s no way I can tell if my fish tank had cyanobacteria in it or not nor if it was the nasty or kinder variety of it. Only thing I know is that it had huge amounts of some lousy looking alga. For unrelated reasons I got rid of this fish tank around a month ago. I’m now very happy I did. I know this one is a long shot, but just thought I’d mention it just in case some of you may have fish tanks that are as full of algaea as mine did.

Cheers,

lfs