Dear all,
It’s been some 18 months since my #2 post with the same title (http://www.parkinsons.org.uk/forum/thread/52461), so thought I might post an update of where I am on this. Maybe someone amongs all of us here in this forum might find one or two bits of what I'm doing helpful/interesting. From my side, I would welcome any feedback you might have on what I’m doing – have you tried any of this? Did it work (or not)? Do you see any other angles to it? Any advice/cautions?
Before I go on, let me just mention the obvious but important disclaimers: I’m neither a doctor nor medically trained, so everything I write can be just wrong and clearly should not be taken as medical advice. In particular, please don’t just start taking the same stuff I’m taking without careful thought and/or medical advice – some of this stuff can have bad consequences because your situation may be different than mine or because I may just be doing the wrong thing.
I was dx on Jun-2011. Since then, I have been trying to find the cause of my PD in the hope that finding the cause will give me hints on what to do to slow-down progression or – if I get really lucky – perhaps even to reverse progression a bit. Around 2.5 years later, I can’t really tell with certainty if I really found something or not, but I can say that I have focused on a few hypotheses that sound more likely to me and which I’m “betting on” (i.e., doing something about). So, here’s what my hypothesis and what I’m doing about i
A. My hypothesis (and why)
My hypothesis is that PD, in my case (it might vary a bit from person to person) was – and continues to be - caused by a combination of the following related, but somewhat distinct, problems: (1) cortisol de-regulation; (2) some sort of inflammation in my gastro-intestinal (G.I.) system, and (3) a problems with something called NADPH oxidase which causes PD-related neuron damage. I suspect all these 3 “problem/causes” are linked, but here’s a quick summary on each one:
1. Cortisol de-regulation. What got me to suspect that cortisol played a role was that (a) my lab tests show that my cortisol levels are outside the normal range and (b) my “google-research” that told me that when cortisol is not working well, our bodies become inflammation-prone (specially in the G.I. system – which links with my 2nd likely problem/cause), hyper sensitive to stress, lack energy, poor memory, and we become irritable. These are all symptoms I understand are typical of PD (and I clearly feel them). In addition, more recently, I also found a study (http://www.ncbi.nlm.nih.gov/pubmed/2157498) that concluded that cortisol “…was found to inhibit the activation of superoxide-generating NADPH oxidase…”, which seems to mean that cortisol problems might be behind the NADPH oxidase problems (my 3rd likely problem/cause).
2. Inflammation in the digestive system. There’s a fair chunk of documentation saying that PwP tend to suffer from gastro-intestinal problems. I clearly have PD and I can easily say that my gastro-intestinal system doesn’t seem to work fine to me. I have had H.Pylori (now “cured”) and always complained of “acidity” to my G.I. doctors who always shrugged their sholders and told me (after putting their finger on my belly and asking me if it hurt) that I was ok. Turns out that cortisol de-regulation tends to make our G.I. system more acid and inflammation prone which seems to make it more difficult for our bodies to absorb some essential nutrients – so, even if you eat all those veggies, the nice things about them might never make it to our dopaminergic neurons. I have no hard evidence of this, but believe there’s a fair chance that this might be going-on in my body and is preventing my brain from getting enough of all the right vitamins and ingredients it needs to build enough dopamine.
3. NADPH oxidase problems. NADPH oxidase apparently uses NADPH (something our brains use to create dopamine) in the wrong way, and it ends up destroying our neurons. The study I mention above seems to suggest that cortisol plays in role in NADPH oxidase (too much cortisol makes too much of it). Perhaps there are other factors that help make NADPH oxidase to get out of whack – I’m not sure (though something called gamma linolenic acid seems to be related and my lab tests show I’m low on this gamma linolenic acid). Anyway I suspect my NADPH oxidase is a bit out of whack, at least because of the cortisol problems (and because I have PD).
B. What I am doing about all this
In short, I’m trying to (1) fix my cortisol de-regulation problem (2) fix my G.I. problems (and eat better), and (3) fix my NADPH oxidase problems. In addition, I’m also (4) taking a few anti-oxidants to help protect my remaining neurons, and (5) taking Azilect to give me as much dopamine as I can. I also mention a few other things in (6).
1. Fixing cortisol de-regulation. This seems to be key but it’s tricky in practice. There’s lot of advice on google on how to fix your cortisol levels, so just look for yourself if interested (and if you believe your cortisol is de-regulated – and endocrinologist should be able to help check this… although I personally am still trying to find one). While the advice is sometimes contradictory, the ones that seem to show up consistently are: (a) moderate exercise, (b) avoid sugars/glucose and carbs, (c) avoid stress, (d) get plenty of sunlight (during the day), (e) avoid blue light after dusk (computer screens, TV screens – or find ways to filter the blue light out: eg, spectacles with yellow/red lenses - I’m typing this with some lovely spectacles that make me look like Austin Powers 
), (f) get a good night sleep, (g) do stuff that gets you relaxed (laugh, meditate, do yoga, dance, etc, etc). In addition, Cortisol seems to require a good level of iodine for its production – I checked my level (lab test) and found I was low on iodine, so am taking kelp pills (kelp is very rich in iodine). Please don’t take kelp/iodine supplements (or any other stuff I mention here) unless you know you are low on it to begin with, as too much iodine can be dangerous. Also, I found out that my transcortin levels are too high and this seem to impact cortisol too, so I’m taking licorice (in pills) and DHEA (50 mg/day) which I read are supposed to help – note this licore and DHEA things was my own initiative without medical advice so taking it just like that may be dangerous.
2. Fixing gastro-intestinal problems (and eating better). I believe that my gastro-intestinal problems are about too much acidity, so I’ve started to eat some oat bran and wheat bran at breakfast (I read it’s supposed to help). I also consulted with a nutricionist and try to follow his advice (at least a bit) on how to eat in a more balanced manner. He also gave me some horrible tasting power to mix with fruit juice that he believes helps fixing gastro-intestinal problems (called ULTRA INFLAM X PLUS 360). In addition he run a whole battery of lab tests and discovered I was low on magnesium, so I’m taking magnesium supplements too.
3. NADPH oxidase problems. Apocynin (a chemical product) apparently stops NADPH oxidase from happening and has been shown in studies to help reduce this “most prominent mechanism proposed for death of dopaminergic neurons in Parkinson's disease (PD)” (see http://www.ncbi.nlm.nih.gov/pubmed/23721786 - note that this study actually tested a sub-component of Apocynin called Diapocynin). I wrote to one of the lead researchers on this study and he wrote back saying “I think if I were you I would resort to taking some of these supplements (apocynin) (at doses that you don’t experience any stomach problems) now”. I haven’t really found were one can buy “apocynin” yet nor which doses one should take (still looking into it) but just ordered (on Amazon UK) a box of something called “Kutki” pills, which essentially contain “Picrorhiza kurroa”, an herb rich in apocynin, which apparently is used since thousands of years in eastern medicine and which doesn’t seem to have many counter-indications. I didn’t try it yet, but will clearly try it as soon as it arrives. As I mentioned above, my lab tests also show I am low on gamma linolenic acid and this might play a role – I am therefore also taking gells of borage oil, which is supposed to be rich in this gamma lineolenic acid.
4. Anti-oxidants. Just-in-case they work to protect my dopaminergic neurons, I’m also taking vitamin C, vitamin E, CoQ10, plus another horrible tasting stuff that my nutricionist seems to believe is a good anti-oxidant: “Elixir de Grenade” (highly concentrated pomme-grenade).
5. Azilect. I also take it.
6. Other stuff. I also take Vit D (because I was low on it), but am increasingly suspecting that it serves no purpose for PD (my guess is that low sunshine plays a role both in cortisol and in vit D, and it’s the cortisol that matters – so fixing vit D doesn’t help)… so I might stop taking it. I also took l-tyrosine (prescribed by my nutricionist) for a while, but stopped when I realized that l-tyrosine combined with iodine gets your adrenal glands to work extra hard and didn’t feel comfortable with that as didn’t “sound” good to me – also, l-tyrosine is a bit like l-dopa as it gets your neurons to work extra hours to create dopamine, and I prefer to stay away from that for as long as I can (though I'm sure I'll have to do it sometime).
Warm regards to all,
lfs