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


#1
Hello,

It’s been a few weeks since I posted something on my first post with the same title http://bit.ly/HbRYNk , so thought I might give a quick update to those of you that may be interested - and ask for any further suggestions or ideas any of you may have.

Since my previous post I’ve essentially got a new set of lab analyses results and had a few discussions with various medical doctors. Here’s a quick update from the things I learned:

1. Mercury poisoning. Like some of you I was concerned that the mercury in my teeth fillings might be a possible cause of my PD. Well, my blood and urine tests show that my mercury levels in my blood and urine are pretty normal. So, if there’s any mercury poisoning going on, it’s not significant enough to show there. I’m thus putting this hypothesis on “low probability”.

2. Iron deficiency. I’m increasingly doubting that this one is a concern as well. As I mentioned before, one of my blood tests showed a low level of iron, but the two subsequent ones showed an ok level. Also, in some of these my ferritin levels were a bit above norm and ferritin seem to be a more accurate measure of iron (measures the iron that is accumulated in the cells). Even if we take into account that high ferritin can also be explained by infection (which I do suspect), the doctors I have discussed this with say that they really see no evidence elsewhere of iron deficiency. So, I’m moving this one to the “med/low probability” category.

3. Oxygen deficiency. As I mentioned in my earlier posts, I suspected this one too, but my neurologist thinks it is unlikely. She argues that if neurons in the PD-relevant areas are dying because of lack of oxygen then one would see it in the IRM (and my IRMs don’t show it). Even though IRMs don’t apparently catch everything, she does have a point. I’m downgrading this one too to the “med/low probability” category too.

4. Infection/inflammation. I continue to keep this one as a “high probability”. My ferritin levels being higher than my iron levels is one reason. I also have a few other lab results that are consistent with it. Still I have made no great progress on finding where the infection/inflammation comes from, but my recent results raised one interesting possibility that I hadn’t thought of before – that I may be low on two things that apparently have anti-inflammatory properties: unbound cortisol and on Gamma-Linolenic Acid (GLA). I’m not too sure yet on what’s the best thing to do about these (and there might be more in that than meets the eye - see below), so any insights would be welcomed.

5. THFA deficiency (Tetrahydrofolic acid). If you can remember these wonderful medical names, you may remember that this thing is rather important for PD (is necessary for the brain to make dopamine on its own, and when we lack it our brains end up creating something else that destroys the neurons instead – thus very consistent with PD). THFA is mainly made up of folic acid (vit B9) and my folic acid levels seemed to be ok, so I thought I was good on THFA. Interestingly, THFA deficiency seems to be one of the possible causes of why someone can be low on unbound cortisol and on gamma linolenic acid (the two things I mention above I’m low on). I’m thus putting THFA deficiency back on my "high probability" category and am trying to find a way to confirm if yes or no I have some THFA problems (despite having an ok level of folic acid). So far, I haven’t manage to understand how one can really test this THFA thing, so would also welcome any insight that any of you might have on this too.

Warm regards to all and please do let me know if you have any thoughts or suggestions on any of the above,

lfs

#2
i posted this is the middle of another thread. i hope no-one minds a repition. personaslly i think its very illuminating but thats probably because it agrees with my own bias.
http://www.hindawi.com/journals/pd/2011/713517/

"The present paper will focus upon the evidence linking microglia and their inflammatory processes to the death of DA neurons following toxin exposure. Particular attention will be devoted to the possibility that environmental toxins can activate microglia, resulting in these cells adopting a “sensitized” state that favors the production of proinflammatory cytokines and damaging oxidative radicals."

in other words there is an initial cause eg poison exposure, which then sets up the 'dustbin-men' cells (microglia) to misbehave much later when a trigger occurs, such as an infection or stress. instead of just tidying up they cause more damage (cytokines, oxidative radicals) which causes more tidying-up - a vicious circle. so the original cause may have been unnoticed and have completely gone leaving a potential mess behind. the question is then how to get the dustbin-men back on track.

then again its just an article amongst hundreds.

#3
ps that fits in with option 4

#4
Noted above, I noticed when working that ladies with PD type illness had really fine white skin, like myself, and I thought at that time I would be likely to get PD. Turnip mentioned skin and immune system. Also I always have had a very soft voice so I think the PD factor was there from birth. Possibly chemical exposure came later.

#5
i know there are several of us who think we can trace back symptoms 30 years or more, but its impossible to prove. i went to a physio when i was 25 and was told i had 'the tightest calve muscles' he had ever come across. they are still my main problem and now definitely pd.

#6
Hi Turnip

I was away for several days with no internet access but just wanted to say "thanks" for your article above. I'm not sure I understand the full thing yet (getting lost in the huge number of obscure medical acronyms) but clearly there's something in there - I'll need to spend more time "decyphering it".

Also, just in case you haven't seen it yet, I happened to browse through one of the articules referred to by your article and thought it was quite enlightening as well, as presents things in closer to plain english and has a section discussing possible treatments for inflammation (something that I'm getting more and more interested in as you can see below :wink:) - you can find it here: http://masterneuro.univ-mrs.fr/IMG/pdf/LancetNeurol-09-8-382.pdf

... and if the link doesn't work, just google the title "Neuroinflammation in Parkinson’s disease: a target for neuroprotection? masterneuro". Note that the last word is the name of the website where you can find it for free.

Also, in the meantime, I received the results from my genetic testing (from www.23andMe.com). Not sure I understand it well yet, but my reading so far is that:

a. They didn't detect any genetic factor that they normally associate with a higher likelihood of PD (so they seem me as an average likelihood of getting PD).

b. They did list a number of conditions that my genetic make-up makes me more likely to get (at least based on correlation studies they did). The one they list with the highest probability is "type 2 diabetes", but I'm not sure this one is the most interesting one as they also say it's very likely for everybody - my genetic makeup apparently just makes it slightly higher probability than average. Perhaphs more interestingly is that most of the other conditions they list me as having a higher-than-average probability of getting are about inflammations/infections in the gastro-intestinal system (crown disease, stomach cancer, ulcerative colitis, and esophageal cancer). I just went through a rather exhaustive gastro-intestinal system check-up in the past few months and nothing abnormal was unconvered, but the fact that I seem to be more inflammation-prone from a genetic perspective lends credibility that chronic inflammation may be behind my PD.

I'm thus moving my hypothesis #4 above to a high probability... and think I'll start investigating anti-inflammatory options.

Best regards to all,

lfs

#7
As a now retired academic, teaching chemistry and Forensics.
I am convinced that my working lab. environment initiated my Parkinsons (dx Aug 2009)

Mainly the solvents carbon disulphide, Carbon tetrachloride and trichlorethylene.

Independant research has linked this group as possible causal effects triggering P.

#8
Hi Frosty
Its good to have person with a scientific background participating (unlike myself). As I presume you are no longer in contact with those chemicals, do you have a view as to how the process continues - are they toxins still in your system, have they set of an immune response etc?
From my own point of view, if I say anything daft, corrections are most welcome (other than spelling).
cheers

#9
Hi Frosty,

Thanks for sharing. I too have no medical/chemical background and thus no clue on how these solvents might work for PD. Is there something that you think can be done in these cases to attenuate or seek to reverse the impact? Also, have you been able to find any way to sort of "validate/confirm" that causuality?

Warm regards,

lfs

#10
Turnip & Ifs.


As said, I have used extensively solvents such as carbon disulphide etc..``
Quite a few scientific papers have been published, indicating that such solvents, pesticides,herbicides could be a causal factor in triggering the demise of dopamine producing neurons..

A good web site, which lists the various potential neurological toxins can be found here...........
http://viartis.net/parkinsons.disease/toxic.causes.htm

#11
Hi frosty,

Apologies if my question was not clear - I meant to ask if you had been able to find any way to sort of info/method to "validate/confirm" that causuality for your specific situation - in other words, have you found anything that support the hypothesis that those solvents really are the cause of your pd and which one specifically is the culprit. I realize there's no scientifically-recognized answer to this question, but just wondering if you have developed an hypothesis of your own... and especially if you've found some way that one could test if one's PD is caused by that stuff as well.

Also, I noted that the web-site you mention (which btw, I find an excellent source of info for everything PD), does say regarding trichloroethylene that (a) the precise means of toxicity is unknown, and (b) "all" workers exposed to trichloroethylene got PD... but I was just wondering if you had been able to develop any hypothesis of your own on how the mechanism works and on how to tell which of these solvents has the active role in your case.

I've also read elsewhere that "exposure to high concentrations of carbon tetrachloride (including vapor) can affect the central nervous system, degenerate the liver and kidneys"... and this striked me as possibly relevant for my own case, as one of the hypothesis I am looking into is that cyanobacteria might be linked my own PD and there's evidence that cyanobacteria can also inflict significant damange the liver. A long shot, but would welcome any thoughts you may have on this.

Warm regards,

lfs

#12

lfs - can I ask where and how you get/got a full set of lab results, what tests you submitted yourself to, and whether you had to fund any of it yourself? Like it seems you seek, I am searching for answers and avenues to investigate making things better for myself.

Many thanks in advance.


#13

Hi Drewster,

Sorry for having taken a while to respond, but I took some time off from thinking about PD...

Quick answers to your questions (feel free to ask for more details if of interest to you):

1.  Where and how to make lab tests.   I live in Belgium.  Here lab tests must be prescribed by a medical doctor.   Once you have the prescription you go into any lab or large hospital and they perform the test.   I got prescriptions for my lab tests in the following 4 ways: (a) routine check-ups (these tend to do a wide range of basic analyses), (b) going to see specialists, explaining my suspicions and asking their help to do a more thorough verification, (c) asking my generalist (only works for the more traditional ones and for the test that are about checking levels of vitamins, etc), (d) for one test that was more exotic, I called a lab that did it and then asked them if they could kindly give me the name of a doctor that was a heavy prescriber of that - it turned out it was a nutricionist on the street next to mine.  I scheduled an appointment the next day (and actually he turned out to be great for prescribing a wide range of lab tests).

2) Costs.  In Belgium, you pay market prices for medically appointments and medical lab tests and then can be reimbursed by the social security for a part of it.  The amount reimbursed is fixed per type of intervention/tests and covers some tests more than others.  In addition, you can have private medical insurance (which I do) and, if so, get reimbursed by an extra amount.  While I never actually calculated it properly, I'd guess that I got reimbursed by around 50 or 60% of the total cost so far and paid for the rest myself.

3) What tests I did.  It's a long list.  If you wish to see all the tests just send me a mail and I'll be happy to send you my excel sheet.  In summary, I did all the tests that you normally do on annual check-ups plus a large range from the nutricionist above, plus a few more for specific question marks I had identified.

Hope this helps,

lfs


#14

How do I send mail? I can't see any way to personally message another forum member (which probably means I'm missing something very obvious!)


#15

Hi Drewster,

If you're on the main page of the forum, under the menu bar on the left side of the page, one of the grey tabs says 'My messages'. If you click on that there's an option to create a new message and type in the name of the person you're sending it to. Users do have the choice to receive direct messages or not, so depending on the individual's setting, a message may not go through.

Hope this helps.

Best,
Alethea
Digital Team 
 


#16

Dear all,

I haven't been back in the forum for quite a while, but just in case it may be of any interest to anyone here's an update on my situation:

Background:  I was DX in mid 2011.  I'm now 5 years later and 50 years old.  After DX I spent a couple of years trying to find out the cause (and possible treatment ideas) of my PD.  I'm a normal person (not medically trained).  I didn't find any breakthroughs nor anything anything scientifically proven, but I came across a few things I found they seemed worthwhile enough for me to try.  Here's a quick summary:

1.   I believe PD is linked to a cortisol de-regulation of some kind.  So everything that helps cortisol "stabilise" will help my PD.  Unfortunately, there are no clear ways to do this, other than general "life hygiene" ones (get outdoors fresh air and sunshine, exercise, eat healthily - plenty of vegetables and few sugars, avoid TV/computer screens 2 hours before going to sleep, keep cool and avoid stress,...).  I have been trying to do better at this, although I still have a long way to go on exercise, spending time outdoors, and eating healthily.

2.  I believe PD involves some form of brain inflammation which cortisol de-regulation makes us more prone dto have.  I don't know what can prevent this, but the best thing I found so far is Kutki. This is supposed to contain Picrorhiza kurroa which itself contains a chemical ingredient (called apocynin) that is supposed to help with brain inflammation.  I am of course not fully sure of all of this, not of the desirable quantities involved, but have been taking around 900 mg of Kutki per day for the past  3 or 4 years in the hope it helps.

3.  There's a number of other meds that have been claimed to help (though, none with clear scientific evidence behind them - so, pls don't just start taking this blindly).  I've been using some of them.  I've personally been taking: (i) 1000 mg of vit C per day (ii) 400 mg of CoQ10 per day (iii) 400 IU of vit E per day (iv) 500 mg of Magnesium Dioxide per day, (v) 1 mg of Azilect per day, and (vi) 125 mcg of Iode (kelp) around 3 or 4 days a week.  I also sometimes take Vit D (sparingly).  I take all of this under the knowledge/supervision of a general practicion or my neurologist - pls do the same.

I'm not sure all this stuff has helped or not (don't know what would have happened if I hadn't taken them).  All I can say is that 5 years down the road:

- My shaking is still limited to my left harm and hand and hasn't progressed much.  I use an app on my cell phone to measure the intensity of it from time to time and it hasn't increase (it has even decreased a bit ... but maybe that's just because I got used to measure it)

- I do feel my muscles have became a lot stiffer - I do use my left hand a lot less for eating, typing on a keyboard, etc.  My left foot also gives me some trouble.  This is the part of PD that has progressed the most in my case.

- Overall I feel positive about life and am not going to let PD get to me.

- I continue to work and lead my life almost as normal as before.  I do tell people around me that I have PD and occasionally they make remarks that they see me shaking... and I just got a new car and chose an automatic gear one... but overall, I don't feel I can't do stuff because of my PD.

- The only other negative I feel is lack of physical fitness.  I'm not currently doing much exercise and am 50, but somehow feel that my muscles melt down - and I feel that some of that is perhaps due to the meds I'm taking.

Cheers,

Luís