Have you tried Thiamine for your PD? If Yes please share your experiences . [To be reviewed by DR COSTANTINI]

[Kia17]

This post is dedicated to the experiences of PwP’s who tried Thiamine.I am going to ask Dr Costantini and Dr Colangeli to review this post.

I very much appreciate your inputs.

[Danasr]

Yes, my movement specialist, when I first got diagnosed, told me that my B1 was low so I have experimented with dosage. I settled on what my Doctor originally told me to take which is 100 mg. I feel my tremors got worse when I took more than the recommended dosage.

[Kia17]

I was diagnosed in March 2017 by DatScan but had the symptoms for a few years prior to my diagnosis.

I started taking Thiamine from June 2017.

Thiamine has alleviated all my non-motor symptoms and helped me with my motor symptoms alot.

My main issue is dystonia when I walk fast or do cycling with a high RPM. Low dose Sinemet has helped me with my dystonia.

My medications and Supplements include;’

- Thiamine 3grs daily divided dose.

-Vitamin D3 and K2

-Magnesium 300mg morning ( Aximagnesio)

-Magnesium 144mg Neuro-Mag, Magnesium L-Threonate at bed time

- Probiotics 3 AOR

- MSM sulfur

- Omega 3

- B12 -Folic Acid

- Sinemet 12.5/50 mg 3 times a day

- NAC 600mg daily

- Mannitol 15 grs a day divided dose

- B3 Niacin . Started recently

Diet: No gluten. Limited glucose intake

- Bulletproof coffee with MCT C8 oil morning

- Intermittent fasting

- Raw vegetables

- Organic foods

- Exercise; Indoor cycling with Non PwPs 3-4 times a week (45 minutes each)

- Fast walk after dinner for 20 minutes every evening.

Thank you

Kia

[Hidden in reply to Kia17]

I'm doing the majority of what you are with not much difference. Can you tell me more about your experience with msm? i ordered it, have it sitting on my table but am too afraid to try it after searching more info on youtube. I would believe anyone here over the debates on youtube.....thanks for sharing.

[Kia17 in reply to Hidden]

I have bought Dr Mercola MSM with Organic Sulfur Complex .That includes (Methylsulfonylmethane) + L-Methionine + R-Alpha Lipoic Acid (from Sodium R-Alpha Lipoate) + Organic Sulfur Vegetable Blend . As far as I know they are necessary elements for the production of Glutathione (the master of antioxidants).I started taking it a few days ago and it’s early to comment on that but I think its a vital element with many health benefits since we have depletion of Sulfur in our soils.

[Hidden in reply to Kia17]

My mistake. I was thinking MMS. I'm a fan of Dr. Mercola and trust his products.

[Hidden in reply to Hidden]

backroombeads.

I have used msm for different things, but it is worth noting that some people do not tolerate it well while it helps others. Skin rash is a common side effect and some people report irregular heart beat. It is typically used for arthritic pain relief and is found in some glucosamine supplements. I also have used it in the magnesium oil topical that I make and use and there is at least one manufacturer who sells a mag oil mix with msm in it but it is relatively high in msm and low in magnesium. It varies from person to person, but I find the mag oil to be more effective for me than the msm in terms of pain relief.

Art

[Xenos in reply to Kia17]

Kia,

Could you tell more about the Intermittent Fasting you choose ?

Like 5+2 ? Fasting every other day ? Not eating before dinner (no breakfast, no lunch) ?

5 days fasting two times a year ?

[Kia17 in reply to Xenos]

Hi Xenos

I normally don’t eat after 6.30 PM till tomorrow at 9AM (a cup of bulletproof coffee with MCT C8 oil). I donot eat again till 2 PM when I take some more MCT oil in my salad and then my dinner at 6PM. No eating till tomorrow at 9.00 before going to gym.

This is an everyday business.

Kia

[Kewlfox]

I have been taking Thiamine since 2nd June 2018, 3 grams for three weeks following an email from Dr.C. I needed help with dystonia. I then stopped for a few days and wrote again to Dr.C as my symptoms worsened. He advised cutting the dose by half and I am now doing so. The dystonia is still present and I still take painkillers but only once or twice daily now. I will report back to Dr.C at the end of this month and take further advice. The other medication I take is Madopar, 100/25 x 5 times daily

Fox

[Hidden in reply to Kewlfox]

Fox,

You said, ' I still take painkillers but only once or twice daily now'.

How many times per day were you previously taking pain killers?

On an unrelated note , how is your PEMF use going....any updates?

Thank you!

Art

[Motherfather in reply to Kewlfox]

hi kewfox try madopar 200/50 1 tablet 3 times a day.and if needed you can take 1 madopar 100/25 3 times a day if needed.have you tried mannitol.have a read about it.

[Kewlfox]

Hi Kia.

Was taking painkillers every 4 hrs, now maybe once or twice a day

I still use PEMF but only if I'm desperate. It didn't do as well as my first few days with it. But intermittent usage seems to have some effect.

Fox

[park_bear]

started thiamine 2g 2x day HCl March 2018

peristalsis much improved by week 2

Other improvements started after 3 months - reduced tremor, improved gait

In July reduced dosage due to interference with sleep, to 1 g in the AM only. Continued improvement in tremor and gait.

[Toogood]

I take 2 gr daily, morning and night along with other vitamins..it has helped symptoms,but still have tremors...

[nldr18]

Kia17,

Thanks for organizing this. I just began the protocol on Monday, and will make sure to keep all posted as I proceed. Dr. Constantini is very responsive, and is tracking my progress as I’m sure he has so many others.

Natasha

[Kia17 in reply to nldr18]

Hi Natasha

Thank you for being here.Please let us know how you get on with the Thiamine.

Kia

[andynest]

I started taking Thiamine from May 22 2018. First month 3 grams daily divided. Then down to 1.5 grams for 30 days. Now back to 3 grams.

So far Thiamine has alleviated some of my non-motor and some motor symptoms.

My overall energy level has improved. I have had severe apathy and total lack of concentration for the past 3 years, would spend most of the day in bed exhausted. I feel better now overall. Even my sister has noticed. I can do some meaningful work during the day which was virtually impossible before. As per my motor symptoms, the motor fluctuations are apparently less severe, my sleep has improved a little. I was having severe cramps episodes early in the morning and they seem to have improved as well. Haven't noticed any significant change in constipation. Orthographic hypotension apparently improved. Can't tell much about the tremor so far.

In short, my condition has improved beyond my expectations. The past 3 years were rough, felt like I was in free fall, piling up symptoms.

My current medications:

- madopar 200/50 4x daily

- azilect 1mg daily.

- mirtazapine 30 mg before sleep.

- bromazepan 3mg before sleep.

- Thiamine 1.5grs 2x daily.

- No exercise since 2015, simply couldn't find the energy. Have exercised hard for my entire life.

Diagnosed 2008 but can trace back 1st symptoms to the early/ mid 90s.

Feel free to ask if you have any questions.

Thanks.

[Kia17]

Andynest,

Thanks for sharing your story.

Kia

[AmyLindy]

Current treatment: Selegiline 5mg 1 year, Thiamine HCL 4gm ( Costantini) 3 months, Glutathione 200mg 2 months (Mischley), Lithium, algae derived Omega 3s, CoQ10, Melatonin & Magnesium, plant based diet w Mannitol, exercise, yoga & stress management. Over the past 3 months I have experienced improvements: gait, arm swing, can "snap" fingers again, quality sleep. My tremor was already managed by Selegiline. I am interested in weaning off of Selegiline to see if Thiamine and/or Glutathione compensates. Studies have shown that Glutathione placebo effect can be as strong as the treatment (Mischley) however, improvements related to the presence of Glutathione circulation cannot be fully self-reported/measured and continue, despite any 'noticeable' effects. MRI studies have show 200% increase in brain glutathione after 3 months' trial. I continue Glutathione despite lack of "visible" impact. I do attribute my recent "movement" improvements to high dose Thiamine therapy (Costantini) and have gradually added nutrition supplements back into my protocol. Dr. C recommended suspension during the 3 month trial period. I exercise everyday and cling tight to research in and out of this tremendous community of HealthUnlocked. sunvox Hidden Hidden jimcaster and others.

[Hidden in reply to AmyLindy]

ditto: "…I do attribute my recent "movement" improvements to high dose Thiamine therapy (Costantini)"