Supplements for PD - what's worked for me... and what hasn't

First of all, many supplements can interact with drugs that you're taking.  Just because something is "natural" doesn't mean that it's safe.  Ask your pharmacist or Google it.  Discuss it with your doctor.

There are many supplements that I don't even consider because they interact with my thyroid medication.  Getting to the right dose of thyroid (actually hypothyroid) medication is already hard - don't need something else messing with it.   The thyroid is the master gland - you mess with that, then you mess with your entire metabolism.  'nuf said.

So what have I tried?

I take these:

Vitamin C, also called ascorbic acid.  I wrote about this here at length.  One thing to remember with Vitamin C, with doses of 500 mg and up, especially, Vitamin C can make it a bit harder for your blood to clot.  This might be an issue if you have surgery or an accident, and might influence how any blood thinning medications work - see what I mean about drug interactions?

Vitamin D2 - why not D3?  It gives me horrible cramps, so I take D2 which my body converts to D3.  Many people with PD have low Vitamin D, which we need for strong bones (kind of important if you fall a lot).  I have a prescription for this and as long as I take it once a week, my Vitamin D level is fine.

Vitamins B1 and B2 - these levels are low so I take supplements on my doctor's advice, but I learned the hard way to only take USP supplements because the B2 I thought I was taking had B6 in it (which I didn't need) and I ended up with scary symptoms from way too much B6 that fortunately reversed themselves when I stopped taking it.  You can about this adventure here.

Calcium - I have osteoporosis and osteopenia.  The research on calcium is mixed, but my endocrinologist likes it and between the exercise, the calcium, the Vitamin D, and the Actonel (similar to Fosamax), my bones are in better shape.  I take Tums, which are chewable and cheap.

I don't take these any more and here's why:

Glutathione - gave me unpleasant intestinal cramps and diarrhea.  No thanks.

NAC (N-acetyl cysteine) - made me feel that my balance was way off.  I think this was because it made my orthostatic hypotension worse (that's really low blood pressure when you stand).  My major problem is balance, so I sure don't want to make it worse.

CoQ10 - tried it for a month with absolutely no effect. The jury is out on this one, so it's not clear there's any real benefit, plus it's expensive (I was taking a dissolvable pill instead of the normal enormous pill), so no thanks.

Will I try other supplements?  Probably -

if I can find clinical research that demonstrates this supplement has been helpful and safe for pwp (not rats that have been given drugs so they act as if they have PD, and not cells in a petri dish),

and if it doesn't interact unpleasantly with any medications I'm already taking. 

Image from Pixabay

Marty Hinz and Amino Acid Supplementation - snake oil or not?

Looked into Marty Hinz and his amino acid supplementation, as I look into just about anything that might make PD easier. 

I have to say I was already suspicious because lots of pwp consider him either a savior or a quack.  But I looked into his claims.

He published a study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068871/ about one patient who showed great improvement on his amino acid protocol - but
#1, it was only one patient,
#2, it was NOT a clinical trial,
#3 all conflicts of interest are supposed to be identified up front so you can evaluate whether there are any biases. 

#1 - you need many patients to see if something works.  There's one.
#2  - you need a clinical trial of a treatment, carefully set up so that you are really testing both the safety and the effectiveness of the treatment. You want to compare the proposed treatment with no treatment and you want a double blind so neither patients nor doctors know who is taking what (so you can see if there is a placebo effect, and if treatment is better than no treatment, and also so that biases don't get in the way.)
#3 - turns out that Marty sells the supplement that he's testing (no, now it's his daughter who sells it) and that he owns the "independent lab" that tested for "success."   How independent can it be, exactly?

Um.  Fail on all three measures.

Any followup studies?  No.  Hmm.  Wouldn't it make sense to do a test with multiple patients?  It's not that hard if it's a tablet to set it up with a placebo for the no-treatment condition.    Wasn't done.  And virtually the only person who quotes him in subsequent studies is...  Marty Hinz.

What about the efficacy of the compounds he talks about?  Let's look on Pubmed to see what research there is.

Tryptophan and serotonin are low in PD, but their actions are complex and subtle, so "just add more" is not the obvious next move. The only article that I could find about tryptophan supplementation is  https://www.ncbi.nlm.nih.gov/pubmed/?term=tryptophan+supplement%2C+parkinsons+treatment and it's an article about probiotics.

Tyrosine - it's well known that tyrosine supplements can interfere with dopamine absorption, so why add it here?  For example, see:  https://www.sciencedirect.com/topics/neuroscience/tyrosine and https://www.rxlist.com/tyrosine/supplements.htm#Interactions 

5-HDP – the only study in the last 40 + years with this supplement has to do with addressing dyskinesia in rats.  Supplementation to improve PD in humans,  um, no.  https://www.ncbi.nlm.nih.gov/pubmed/24004632

Sulfur amino acids - when I search on this in Pubmed I get studies about NAC, which is deficient in PD patients, and supplements are widely available in places like Amazon.com.  I even tried NAC, but it makes my low blood pressure worse, so not using it any more. (Other than the blood pressure I didn't notice anything else.)

What does he claim on his website?  
According to one of his websites, http://amino-acid-therapy.com/neurotransmitters/imbalances-cause-disease-symptoms/  ALL of these conditions are from neurotransmitter imbalance, but he can treat them all 

Sorry, whenever I hear that the same problem causes lots and lots of conditions (pre-menstrual syndrome, cravings, depression, ADHD, PD, addiction...), but this treatment works, I grab my wallet and run. 

If you still want more about Dr. Hinz, go to see this post on Quackwatch:

https://www.quackwatch.org/11Ind/hinz.html 

Snake oil.

Image of duck from Pixabay.

Adventures with blood pressure - low blood pressure

Always had low blood pressure, even in childhood, so I know that if you leap out of bed you'll end up fainting, which is not as glamorous as it sounds (for instance, your elbows hit things on the way down, and you land in a heap).  With PD, this has gotten worse - now there's a BIG drop in BP when I stand.  It's called orthostatic hypotension.

So I added compression thigh-highs at my neuro's suggestion.  Also not glamorous, and a b*tch to put on, but they feel good!  My legs don't feel tired and full of fluid; my ankles haven't expanded.  And I don't feel like I have to faint all the time.  (Now I only feel that when I'm showering and can't wear the hose, for obvious reasons).  I learned that, yes, rubber gloves really do make these easier to put on.  Yes, there are meds for this, but they can result in HIGH blood pressure, so I want to avoid these.

But then came hot weather.  I was feeling really rotten two-thirds of the way through a strenuous exercise session, even though I was drinking plenty of water (and promptly going to the bathroom - like beer, I was only renting the water).  First I thought I was just running short of dopamine, because that happens.  But then I thought that I felt rotten because of hydration, but I was already hydrating, wasn't I? 

The compression stockings get hot when I exercise, hotter when I wear full-length pants/jeans.  So I wear what we used to call "pedal pushers" and now call "capris."   Shorts show the tops of my stockings when I exercise - so attractive - so they're out.

Hydration is critical in hot weather, because you sweat more.  But if I drink even more water, it just goes through me and I'm peeing more than once an hour!  Um, help.  And with exercise comes even more sweat.  So I re-read all the orthostatic hypotension advice, and notice they talk about salt.  I already add extra salt during meals and cooking (which feels weird because we were always avoiding salt when I was a kid.), but what I read mentioned "salt tablets."  Well, what the heck - I'll try that.  So I take a tab with a glass of water when I first get up; I notice that makes walking around before my shower a bit easier - and I don't instantly have to pee as the liquid makes a beeline for my bladder!

I also take a salt tablet every time I drink a glass of liquid, all day.  This is helping.  I'm back to peeing once every hour or two, and I can live with that.  But now I'm peeing a couple of times a night, which interrupts sleep, and I don't need to lose any more sleep.  One of my Rock Steady coaches suggests that I stop taking salt late in the day.  So the last salt tab is right before late afternoon exercise, and none with dinner or later.  After one night's experiment, I only wake up to pee once, so we'll try this again.  I'm hopeful.

Images from Pixabay