Protandim for Parkinson's?

I'm in a Facebook PD group that was discussing Protandim, an herbal supplement.  A woman who sells the supplement quoted from the company website about "research" that showed this supplement is really amazing: According to the company website, " It's also been shown to reduce oxidative stress in humans by 40% in 30 days."  I looked and looked, but the only studies about Protandim that I could find were in test tubes, in mice, or showed that the supplement didn't do anything in humans. (Research on actual humans: Protein synthesis and runners and alcoholics.)

Finally, I found the abstract for the actual study that the company (LifeVantage) is referring to, from 2006.  (Here's the full paper.) There are just a few things wrong with this study. These include:

• It contains a sales pitch for why the supplement contains these particular herbs and explains that they must be safe because they've been used naturally for a long time.  Since when does a sales pitch belong in a scientific paper?  And safety?  I thought of digitalis, which has been used naturally for centuries, but it would kill many heart patients; "natural" does not mean safe.

• There's no placebo group in this study, so is the result from Protandim or is it just enthusiasm? There is often a placebo effect so it's wise to see if the supplement has a different effect from the placebo.

• The people in the study were ages 20 to 78.  Really?

• Some of the people, though we're not told which ones, are taking other "supplements."  We're not told what supplements they are taking, either.  Could this have influenced any of the results?

• The text says there are 19 males and 10 females.  Group 1, which got a full dose, had 20 people in it.  Group 2, which got a half dose, had 4 people in it.  Why is it that the researchers don't tell us the mix of ages for each group, which genders were in each group, or how people were chosen for either group?

• This is the best part: they had data on 29 people and refer to the 29 repeatedly in the text and illustrations.  But group 1 (N=20) + group 2 (N=4) = 24, not 29.  What happened to the other 5?  Their data didn't work out?  The researchers don't say.

• Out of 5 authors, 2 are associated with the manufacturer of Protandim.  In fact, one is just associated with the manufacturer, not with any research institution.  What is he doing here?

• One of the authors is also on the editorial board of the journal.  Possible conflict of interest?  Considering that elementary math was overlooked, this article doesn't look like anybody subjected it to even a basic review, never mind a rigorous peer review (which, frankly, should have caught all these issues).

Does all this mean Protandim is bad? No. Not at all.  What it means is that nobody can tell. 

So far, there are no studies of Protandim and Parkinson's, so we don't know if it's safe for pwp, never mind if it's effective.



Image from Pixabay.

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.

Scary overdose of supplement

Just had a real scare.  Pins and needles in the extremities that are most effected by PD were getting worse.  My neuro tracked it down to having more than twice the normal amount of B6 in my body.  Like a lot of pwp I take supplements to deal with imbalances caused by PD, but I wasn't taking B6, or B-complex, or even a multivitamin.

You can't get an overdose of B6 from food, so it had to be coming from a supplement (could have been B1, B2, magnesium, C).  I stopped all my supplements and the pins and needles are slowly improving.  It will take a few months to find out if there is any permanent damage.  So trying to make my PD better actually made things worse.

Which supplement had stuff in it that's not on the label?  Who knows?  But about one third of supplements have materials in them that aren't on the label - for example, "natural" pills to improve, um, male performance often turn out to have sildenafil in them - Viagra.  Not so natural.

How can I protect myself, when the FDA doesn't regulate supplements the way it regulates medicine?  There is actually a way - USP is a program that manufacturers can participate in, demonstrating that the contents of a supplement are actually what's on the label.  For more information on USP: http://qualitymatters.usp.org/what-letters-usp-mean-label-your-medicine

So I've gotten very conservative about supplements.  If it's prescribed and I get it via pharmacy, like my D2, that's fine.  If it is USP verified, that's fine.  Otherwise I'm not going to take a supplement.  Lesson learned. 

Image Pixabay and Free Vector