park_bear made a very compelling argument for taking P5P (active B6)

[Gcf51]

     park_bear made a very compelling argument for taking P5P (active B6)(a).

My comments are: 1) When I tried taking (his recommended) 2 hours after C/L, I started walking side to side and the problem didn’t clear until I took my C/L again. 2) I am afraid to take P5P before bed because I did not sleep a wink after taking in the afternoon (first day). 3) And, as park_bear indicated, I believe P5P inactivates carbidopa and makes both unusable.

I have read that only 5%(b) of levodopa before carbidopa was added makes it to your brain and after carbidopa only 44%(c). If you are going to neutralize the carbidopa in your system, it makes sense not to while you maybe don’t need extra dopamine in your brain. And, because I am afraid to take before bed, I decided to try first thing in the morning.

Experiment: I took 1000mg B1 (my HDT sweet-spot), 50mg P5P and 100mg B2 first thing this morning. My plan is to eat something, wait a total of 3 to 4 hours and then take my C/L.

I took C/L 3 hours later. I encountered no problems except I felt a little tired. I am thinking that I had 3 hours of P5P benefit un-canceled with a minimum amount of carbidopa in my system.

4 hours after my experiment: I feel fine, that the P5P helped and my PD is well controlled. Not saying I will do again tomorrow.

(a) park_bear’s post: healthunlocked.com/cure-par...

(b) “For most patients, only about 1 to 5 percent of the drug (L-dopa) actually reaches the brain.” news.harvard.edu/gazette/st...

(c) “Even with these drugs (carbidopa included), up to 56%(*) of l-dopa fails to reach the brain.” [(*) fails, so only 44% reaches the brain.] science.org/doi/10.1126/sci...

Notes: This is my experiment; this is my thinking and should not be considered proven facts. It is also entirely possible the references are taken out of context (I believe the 5% and 56% was due to not taking C/L on an empty stomach). Now that I have taken P5P for 4 days, maybe it won’t keep me up, if I take at bedtime. I am a firm believer that High Dose Thiamine (HDT) works.

[park_bear]

Thanks for sharing your experience!

[ssrs in reply to park_bear]

My hwp is taking Rytary. Since it has the combination of the immediate and extended release c/l, when should he take the P5P and how much should he be taking? I just switched him to the Now brand of P5P.

Thanks!!

[park_bear in reply to ssrs]

They just need to stay separate in the digestive tract. Separate by 2 hours in time and/or by a meal. I take the ER version of C/L.

[Esperanto]

Your normal daily intake of vitamin B6 by food is about 1.5 mg. Likely due to the influence of carbidopa in your PD medication, a portion of this B6 is broken down. This is also evident in the database I made with 10 results of PWP who do not take B6-containing supplements, with only 1 exception. Wise in that case to supplement with P5P.

Your current intake of 50 mg P5P is approximately 3350% (!) of your required daily intake. This seems disproportionate and highly unlikely that it is all being broken down by carbidopa. This is confirmed by the 14 test results of PWP who had taken B6 supplements over a longer period. It shows that even with a carbidopa intake of more than 100 mg, there is always a significantly to high B6 PLP value when P5P supplementation is exceeding 7 mg, 465% of the daily required intake, or more.

If you feel good with your current high dosage, you should definitely continue with it. However, it takes a long time for B6 supplementation to build up and break down to reach your ultimate level. But there also appears to be an interaction between ALL B vitamins, so finding a balance is probably essential. Extreme dosages are unlikely to contribute to that. Very boring and therefore not popular, I am a firm believer that Low Dose B-Complex (LDB-C) works….

[Mandoblast in reply to Esperanto]

Piping Rock has a B-100 pill that is just the RDA for each. 100% of the RDA. That's all.

Makes a good starting place.

[Esperanto in reply to Mandoblast]

Thanks, Possmenatt also posted this earlier today, to which I replied this.

A fine safe dosage for PD if there are no major shortages. If necessary even possible 2x a day. No bioactive vitamins, so with B6 pyridoxin instead of P5P. You can't expect anything else with such a low price. Given the 1.7 mg dosage, that doesn't seem like a problem to me.

[Mandoblast]

I'm occasionally dabbling in P5P at about 12mg at a time (1/4 pill). I haven't done it very systematically. Maybe over Christmas break. In the day or so after taking some, I think I feel unusual pains and symptoms, as well as finding myself thinking I'm improved over all. As it is, I'm getting nearly double the 75mg of Carbidopa that is nec to 'saturate' the system. So maybe I can afford to let the B6 and the Carbidopa fight it out a bit.

[Gcf51 in reply to Mandoblast]

I am finding 50mg shortens my sleep too much.

[ForViolet]

I give my husband 4-5mg of B6 daily. We used the P5P form up until about 10 years ago when I read Ray Peat's advice to use the simpler form. I think he advised using the simple form whenever you decided to use a supplement.

I think Ray advised that 4-5 mg of B6 was a safe and effective dose, so I lowered it to that dose...

Just "joining in" on the subject. It is a controversy.

[Gcf51]

I overreacted to the B6 issue; it is completely possible that my B-complex (4mg B6) may provide enough B6 to supply the B6 that my body needs. For me 50mg caused more problems than it solved. I will talk with my doctor and have my blood tested before taking any additional B6 again. I will (make a point of separating my B-complex) by a meal and my doses of C/L.

[Esperanto in reply to Gcf51]

Smart to test first. By continuously taking a moderate B-Complex, you ensure that the potential impact of a B2 deficiency on the B6 test result, as warned by park_bear, is prevented.

I hope you want to share the results with me for the following database:

healthunlocked.com/cure-par...

[Equinedreams in reply to Gcf51]

I take p5p to help hide symptoms of tardive dyskinesia from quetiapine. I do not have parkinsons. I developed relief but problems of stumbling falling about qt 150 mg pyridoxine. When I changed over to p5p I thought I could have optifast or ensure, drink which has pyridoxine in it like most supplemented B6 foods. This knocked me for a sixer and I could barely walk. When I went online I found research material that indicated pyridoxine and p5p both use and compete for the same receptor. I stopped my multivite as well and lo I could walk again and my tardive dyskinesia symptoms settled right down. I also take tocotrienes for their neuroprotective factors instead of Vit e tocopherols. I am hoping like hell my tardive dyskinesia will not get worse as I can't get off quetiapine. Tocopherols appeared to make me moody. Tocotrienes less hungry and more settled mood. If you had told me years ago I would be using hi dose vitamins to control a serious health condition I would not have believed you. I got desperate. There are few treatments in my couontry for tardive dyskinesia that dont make matters worse.

[Gcf51 in reply to Equinedreams]

Are you saying you had problems taking a supplement with pyridoxine and another with P5P? and you had to stop taking pyridoxine.

Are you taking any meds with carbidopa in it?

[Equinedreams in reply to Gcf51]

I dont have parkinsons so no parkinson type meds. Pryidoxine is metabolised in the liver to p5p. Sorry I am new to this site I wanted to participate in discussions on tardive dyskinesia and non dietary level supplementation with p5p. I did note that I had side effects on pyridoxine changed to p5p then learnt pyridoxine and p5p compete for similar receptors. That pyridoxine is rife in supplements some of which I was having. That p5p supplementation as well as pyridoxine together made for a much worse outcome. I was staggering and could barely walk my feet felt numb. Scary. It got better because I got rid of pyridoxine quick no multivite no fortesip no ensure no optifast.

[Esperanto in reply to Equinedreams]

You are fortunate to have been able to reverse the effects of B6 toxicity, such as peripheral neuropathy, in time. In the future, taking a very low-dose B-complex may be beneficial, but for now, without B6. It is likely that you have enough of it accumulated due to the stacking by the half-life of a month in the coming years. In any case, I would recommend getting a B6 blood test first.

The advice of B6 supplementation for TD is also mentioned on the website of the National Organization for Tardive Dyskinesia (NOTD), the patient organization for TD. They also provide a warning about overdosing, along with the remarkable story of the founder:

« ……. However, it is now known that B6 at the levels used in the TD study cited can easily become toxic. For instance, our Founder developed Vitamin B6 toxicity after her first dose of Vitamin B6, P5P, 200mg, confirmed by a blood plasma test. A few hours after ingestion, her arms began shaking uncontrollably, and she could not speak or walk right. Fortunately, she recovered fully in about a week. This has opened our eyes to the incidence of this disabling condition. We have since learned that others have developed toxicity after such short exposures. There are many cases where the individual can take months or years to recover. Because of this, we no longer consider Vitamin B6 as a possible supplement for TD patients. First-hand experiences about this can be gleaned by joining any of several Facebook groups on B6 toxicity.

1. Lerner V, Miodownik C, Kaptsan A, Bersudsky Y, Libov I, Sela BA, et al. Vitamin B6 treatment for tardive dyskinesia: a randomized, double-blind, placebo-controlled, crossover study. J Clin Psychiatry. 2007;68(11):1648-54 »

tdhelp.org/treatments/

[Esperanto]

As you may know, I am collecting B6 test results for a personal database to gain better control over the B6 dosage in relation to the C/L medication. Maybe you have mentioned this before, but how much C/L do you take daily?

healthunlocked.com/cure-par...

[Gcf51 in reply to Esperanto]

C/L Currently 2, 2, 1.5 (5.5 a day), B6 plasma level was 32.4 the (range is 2.1 to 21.7) on Feb 13, 2024