B2 benefits for PD

[38yroldmale]

I’ve basically done this same study I’ve linked to in this post since the first of December. 50 mg of b2 every 8 hours and no red meat. The study is 30 mg dose but I can’t find it. My b2 was very low. The test was very expensive but worth it to know. However with no side effects and being very cheap, you could just try it without testing your levels. It took about 2 months to feel any difference. I feel a ton better and still feel I’m improving. Try it, unlike most other things I’ve tried, I’ve had no side effects.

I also believe Restore Gold has been very Beneficial. It’s ingredients, NAC, which increases your glutathione, Tauroursodeoxycholic acid (TUDCA), a sister to a pharmaceutical drug that has proven to help with PD and I believe slow progression and others helpful ingredients . I’ve had Parkinson’s for coming on five years. I stopped taking restore gold for about six months, six months ago. I progressed more in those six months than I had in the almost 4 years before that. I’ve been back on it for six months, and with the help of B2, my progression has stopped with a light regression symptoms on my affected side.

It’s gross but my second and third toes my affected side I have had athletes foot fungus that makes the toenail disgusting. I’ve read a book that It said that it’s very common for that to happen with Parkinson’s. My unaffected side toes started to cloud over like my affected side when I was off the restore gold for six months. During that time, my neurologist said that the Parkinson’s was moving over to the other side. Since being back on the restore gold , and doing the B2 protocol, the neurologist said that my Parkinson’s had disappeared from my good side . Also, my toenails have completely cleared up on the unaffected side and it’s starting to clear up on my affected side. I don’t know how you can believe it’s placebo affect. I’ve also started to take inositol that helps with OCD and has natural iron chelation properties that could be responsible for problems with PD. I’m guessing if you’re reading this, you probably have some OCD tendencies, which is very common with. Parkinson’s. I started taking in inositol for OCD about 4 months ago as well so maybe the improvement is a combination of the 2.(b2 and inositol) I hope my information might help someone else that’s struggling.

scielo.br/j/bjmbr/a/BM4WLJB...

ncbi.nlm.nih.gov/pmc/articl...

[park_bear]

Fascinating. It never crossed my mind that OCD might be related to Parkinson's, but here it is: jnnp.bmj.com/content/70/3/394

Toenail fungus is not referred to as a Athlete's foot but rather it's called onychomycosis. It never crossed my mind that this could be related to Parkinson's either.

[38yroldmale in reply to park_bear]

Parkbear, I want to know your thoughts on this study.

onlinelibrary.wiley.com/doi...

Have u seen a less descriptive, worthless study. 9 Patients?? Are you kidding me? It’s almost as if they wanted to disregard any effects of inositol?

I am almost fully Scandinavian. I know that it’s common for people of Scandinavian and northern European decent to have problems absorbing too much iron. I live in rural town that has a Scandinavian festival because so many of us are from there. There are also tons of people who have Parkinson’s, way more than average

[park_bear in reply to 38yroldmale]

Indeed it was a small study. There was a non-stat sig improvement in their measure of motor impairment, although placebo helped almost as much. It therefore falls short of proof that inositol could not help with Parkinson's. More importantly, however, it did not do any harm, and you are taking it for OCD, and there's at least one study showing that it helps with OCD.

A Parkinson's cluster in your town calls for investigation. It could be genetic, or environmental, or combination of the two.

[rescuema in reply to 38yroldmale]

If you want to lower iron accumulation, the best and the fastest way to accomplish this is through blood donation or therapeutic phlebotomy. Iron chelation depends on the form of inositol.

[Fumaniron in reply to park_bear]

yes, I’ve read about the toenail fungus, as well. Here is a link to the free book regarding this (I don’t have the exact area in the book notes from the top of my head.. The eastern philosophy and parasympathetic emphasis on recovery is quite interesting, indeed. pdrecovery.org/wp-content/u...

[38yroldmale in reply to Fumaniron]

thanks, I was looking for that book.

[Fumaniron in reply to 38yroldmale]

👍

[LAJ12345 in reply to Fumaniron]

hubby has fungal toenail too. He had a bad reaction to anti fungal years ago so stopped them. I wonder if it the fungus or the anti fungal drugs that link to PD?

He also had rosacea for years and we we got rid of that with gluten free diet, b5 , allimed and berberine. That stopped the smell too.

[LAJ12345 in reply to Fumaniron]

p291 I think.

[Fumaniron in reply to LAJ12345]

Yes, that’s it

[LAJ12345 in reply to park_bear]

oh yes, OCD at our house! Hubby and 20 year old son definitely have it. The more anxious they get the worse it is. I think it is some kind of control method to soothe anxiety.

First I noticed it with hubby was decades ago when kids were small. He used to fold washing and toddler underpants into tiny little piles and have arranged in underwear drawer. Heaven help anyone who went into drawer and disturbed the arrangement! Yet he has no concept of cleaning anything, particularly the toilet!

Son has very strange ones like not finishing the last of anything. Opens new packets when there is still 20% left. And won’t use last 20% of toilet roll. Very tidy and particular. Very paranoid about people touching his stuff and germs from said people.

They both have to do a list of things before they can get started on anything and will delay starting to last minute which maximises stress!

[chartist]

Riboflavin acts as an antifungal .

Art

[JayPwP in reply to chartist]

Hello Art,

I have been searching but I was unable to find any information about B2 / Riboflavin being an antifungal. Would you please share if you find any info about the same?

I was able to find Niacin / B3 / Nicotinic Acid being an antifungal here:

knowthecause.com/the-antifu...

[chartist in reply to JayPwP]

Here is a link to some of its antifungal effects and there are other studies to support the antifungal qualities of B2 :

sciencedirect.com/science/a....

Btw, any updates on how B2 is working for you? I think the whole B complex has health value for PwP.

Art

[JayPwP in reply to chartist]

Nothing noticable to share at the moment Art. Thanks for asking

[JayPwP in reply to chartist]

Found it

ncbi.nlm.nih.gov/pmc/articl...

[chartist]

This study suggests there may be a fungal component in PD :

ncbi.nlm.nih.gov/pmc/articl....

Perhaps your toes give a glimpse of what riboflavin might be doing in the brain and CSF???

Art

[chartist]

It is often mentioned about "the PD smell" as somewhat of a musty smell. The smell of fungus is described as having a musty smell.

healthline.com/health/jock-....

Art

[JayPwP]

What is the B2 test name? Which form of B2 do you take?

[chartist in reply to JayPwP]

I wasn't sure if you were asking me, but in case you were,

Vitamin B2 (Riboflavin) Blood Test

I use riboflavin and plan to try R5P in a future test.

Art

[JayPwP in reply to chartist]

Thanks

[38yroldmale in reply to JayPwP]

Just regular b2 that’s cheap. The methylated version gives me anxiety.

[JayPwP in reply to 38yroldmale]

Thanks

[chartist]

B2, B5 and folate are antifungal.

Art

[Psalmody]

thanks for your detailed info.

A lot of trial and error isn’t it! Glad u are getting results. Are you on any PD meds at all?

[38yroldmale in reply to Psalmody]

yes, I’m on Rytary. I’ve lowered my dose a couple of times and on the lowest dose they make. I have a very fast comt so the extended release works better for me

[LAJ12345]

what dose of inositol do you use? I bought some ages ago but didn’t get around to trying it.

[38yroldmale in reply to LAJ12345]

3-4 grams. It can be helpful for sleep. It is a methyl donor so watch out for excessive methylation

[LAJ12345 in reply to 38yroldmale]

my hubby has a very fast dopamine beta hydroxylase but his COMT seems one of the only thing that is normal. Having said that they just put him on a COMT inhibitor to try and slow down his dopamine breakdown . He is feeling quite good at the moment as he often does once summer is over here.

[gomelgo]

I am now thoroughly confused. A whole book was written about b1 therapy. But you're talking about b2, yes? And someone here mentioned b5 as well. I don't have any toe onychmycosis .. but my toes on my affected side sure do curl. I'm not sure what to try anymore. Could use some guidance.

[38yroldmale in reply to gomelgo]

The great thing about b2 is the only side effects is yellow urine. B1 can have a worsening of symptoms at overdose. The study I sent a link to was easy, eliminating red meat and taking at least 30mg every 8 hrs. They had amazing results.

[gomelgo in reply to 38yroldmale]

Since I'm vegan, I have 50% of that already covered! But what about this methylation stuff? I'm not sure I understand that part.

[38yroldmale in reply to gomelgo]

That’s regarding inositol, not b2. Methylation can be increased with methyl donor, that can make some people with MTHFR/fast comt feel worse and use up dopamine quickly.

MTHFR is related with the body’s ability to folate. It’s complicated but I cannot absorb folic acid, and the folate I can us is around 15% of a normal person. COMT is basically how quickly your body uses up neurotransmitters. My COMT is extremely fast. Stalevo is a form of levodopa that has a drug paired with it that slows down COMT.

[gomelgo in reply to 38yroldmale]

Oh ok. Thanks for explaining. And you think the inositol is helping you lower meds as well? If so, what symptom do you think it addresses?

[38yroldmale in reply to gomelgo]

Yes, OCD worsens symptoms for me, also inositol has iron chelation properties iron accumulation is sometimes associated with Parkinson’s,

[rescuema in reply to 38yroldmale]

I'm confused - which form of inositol do you take?

If you're taking inositol for OCD, then you're probably taking myoinositol, the most prevalent form. This form is not known to chelate iron. Such as this amazon.com/Jarrow-Formulas-...

To bind and chelate iron, you need IP5 or more commonly Inositol hexaphosphate (IP6), also known as phytic acid, which is known to also bind zinc and other minerals.

[gomelgo]

Also, I really wish folks would say up front whether they are on meds as well. I am doing my best to avoid taking the meds, and hoping I can find a set of supplements that will do the trick.

[38yroldmale in reply to gomelgo]

I am on meds, Rytary, But I have been able to lower my dose.

[JayPwP]

I read that main difference between riboflavin and riboflavin 5 phosphate is that riboflavin is the inactive form of vitamin B2, whereas riboflavin 5 phosphate is the active coenzyme form of vitamin B2.

pediaa.com/what-is-the-diff...

[CaseyInsights]

Please Jay…be more mindful of the stuff you put up. Riboflavin (B2) in either form, taken orally is in no way associated with blindness.

You are referencing a drug. Here is the write up

Riboflavin 5-Phosphate eye drops is a photoenhancer used in combination with the KXL® System in corneal collagen cross-linking for the treatment of progressive keratoconus and corneal ectasia following refractive surgery…This medicine is to be given only by or under the supervision of your doctor.

Thanks 🌹

[JayPwP in reply to CaseyInsights]

Thank you. My bad... I did not notice the 'opthalmic route' reference. Reply corrected...

[JayPwP]

At 1:25 minutes, he talks about neurological conditions due to misfolded proteins and how 100s of proteins are Riboflavin dependent.

youtu.be/q0LCH4RMW-s(Not working as expected?)

[JayPwP]

Is it ok to take Syndopa CR and Riboflavin together or in close proximity to each other?

[chartist in reply to JayPwP]

Hopefully so as the body produces riboflavin in the gut microbiome naturally, but possibly not so much in a perturbed gut microbiome or dysbiosis.

Art

[JayPwP in reply to chartist]

Thank you Art.

Just popped a 10mg pill 30 mins ago. Will take Syndopa CR after another 30 mins.

[JayPwP]

Here's my serum B vitamins test results. This is blood drawn in the morning after 12 hours of fasting.

Your thoughts are welcome.

B vitamins test results

[38yroldmale in reply to JayPwP]

Jay, they look pretty good but I’d want to be at least over 600 with B12, I prefer around 1000. Your b6 could go up a tad, but be very careful with b6. Can interfere with meds and can become toxic, (I did)

[JayPwP in reply to 38yroldmale]

Thanks. I was worried about the B1 and B2 values, but I believe the reference range is based on normal RDA, and the high dose values would report beyond the reference range.

[38yroldmale]

b1 And b2 have almost no toxicity, same with b12, b6 however can b6 toxic easily

[chartist in reply to 38yroldmale]

How is the riboflavin testing going?

Art

[38yroldmale in reply to chartist]

I am continuing to see improvements. I’m sure my b2 very high but my toenails on my PD side are continuing to clear up.

[chartist in reply to 38yroldmale]

1. What improvements do you attribute to B2?

2. How long have you been on it now?

3. How long did it take before you saw an improvement?

Art

[38yroldmale in reply to chartist]

I also cut out soda. Especially diet drinks.

[38yroldmale]

1. Way less stiff. Gait improvement (my worst symptom) more dexterity on PD side. My meds seem to last longer, I also lowered it from 3 times a day to 2 times a day

2. I started last part of November, so about 6 months

3. It took at least 2 months to see anything

Only side effect, very yellow urine,

[JayPwP in reply to 38yroldmale]

I started 30mg thrice a day 15 days ago. Have noticed better sleep. I was on Syndopa CR 250 twice a day. Have stopped the noon pill 3 days ago as I was feeling worsening of symptoms after taking the pill and feel better without it. Still taking the pill before bed

Currently:

8am: 1 cap methylated b complex containing 30mg b1 HCL & 28mg Riboflavin+5phosphate mix, 2x100mg b1 HCL and 1 magtein cap

4pm: 30 mg riboflavin

11pm: Syndopa CR 250

12am: 30 mg riboflavin

[chartist in reply to 38yroldmale]

Thank you for the update, it sounds like it is working well for you!

Yes, B2 is known for yellower urine and I notice a change in the odor of the urine.

[JayPwP]

Would someone help me understand if it is ok to take B1 HCL, B2 or R5P, and Nicotinic Acid together? Any comments welcome.

[CaseyInsights]

Jay, a B-Complex has all these items. What is the problem here 🤷🏽‍♂️🤯🤷🏽‍♂️

[JayPwP in reply to CaseyInsights]

A b-complex usually has Niacinamide, not Nicotinic Acid, hence the query just to be safe 😊

[CaseyInsights in reply to JayPwP]

Jay, the only reason most B-Complex products have Niacinamide is to make it accessible to a wide base of users as Nicotinic Acid causes a flush.

The B-Complex I purchase has a combination of Nicotinic Acid and Niacinamide.

Go Brave 🌺

[JayPwP in reply to CaseyInsights]

Thank you

[chartist]

It's been over 4 months since you put this up regarding riboflavin / B2. Can you give an update?

Art

[38yroldmale in reply to chartist]

I’m doing great. My 3rd toenail on my PD side has completely cleared up and my 2nd has about a 1/3 clear. I think EVERYONE who has PD should start taking B2. No side effects and very cheap! I’m taking about 1/2 the c/l I did before. I also discovered my liver was damaged and not working as well as it should. I’m detoxing my liver, limiting my sugar and drinking lots more water. I’ve been taking most of the top supplements that Dr Mischley studied. I’ve started one by one and saw benefits with almost all of them. Very little side effects.

This study is one of the most important things I’ve read on PD

mdpi-res.com/d_attachment/n...

[chartist in reply to 38yroldmale]

I'm glad to hear that B2 has worked very well for you!

Thank you for the update on your use of B2 and the benefits it has brought you in terms of symptom relief!

It would be nice if more forum members could be aware of how you have benefited from B2!

Art