Help with dosing

[JayPwP]

I have:

1. B1 500mg Vitacost , 1 cap every morning

2. Melatonin 10mg, 2 tab every night

3. C complex 500mg, 1 tab with Melatonin

Unopened:

A. Jarrow's Magtein

B. Turmeric / Curcumin

C. Methylated B complex

D. D3 + K2 600 IU

E. NAC 500mg

F. Vinpocetine 10mg

G. Ginkgo 120mg + Bacopa 380mg

H. Mannitol powder

and I am deteriorating. So i am looking to use all these and attempt to slow progression.

I believe some of them work better while sleeping and some while fasting and some when taken with food.

Please help. Your views are appreciated.

[Hidden]

Vitamin B1 as thiamine hcl is not at therapeutic level

[JayPwP in reply to Hidden]

Thanks Roy

[Getz in reply to JayPwP]

This is what I take as well. What is therapeutic level?

[JayPwP in reply to Getz]

+- 4grams daily

[chartist]

Jay,

Have you gone through the testing process of finding your correct dose of B1? The effective dose range reported on this forum is 25 mg/day ~ 4000 mg/day. You have to find out at what dose you start to react to B1. Have you found benefit from B1 at any dose? Are you taking C/L?

Art

[JayPwP in reply to chartist]

I have tried but unable to find the dose

[Hidden in reply to JayPwP]

Four months TRACKING improvementFIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos every 30 days. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.

[JayPwP in reply to Hidden]

Will try again

[chartist in reply to JayPwP]

You don't say what dose levels you have tried, but if you have not found benefit at any dose up to 4000 mg, some people do not respond to B1 and it is possible that you are a non responder.

Art

[JayPwP in reply to chartist]

Have tried between 100mg to 2000mg

[chartist in reply to JayPwP]

Jay,

That leaves another 2000 mg untested. I would try the full range before throwing in the towel on B1. Dr. Costantini said that the right dose will improve the pull test and improve symptoms while a dose that is too low will do nothing.

Art

[JayPwP in reply to chartist]

Thanks Art. My pull test is good. My Neuro gives me a pull test on every visit. No imbalance

[Gioc in reply to JayPwP]

Thiamine HCL or b1 is not stored in quantity in the body and lasts for a very short time (a few hours). It is an co-enzyme that helps to burn nourishment and thus energize the cells, it is not the nourishment itself. Therefore it needs that the person is well nourished and has all the other substances available for its functioning, the most important of which are magnesium and calcium but also the other minerals, normally we are all well nourished but it must be said.

It works well at 1000mg but also at 500mg and it would be preferable to distribute them throughout the day in 3/4 times.

There is a practical test (that I never write bere) that you can do and repeat several times to confirm that it will give you the certainty of thiamine gains and it is this: When the ldopa ends its effect, after about 3 hours, and the symptoms worsen a little; at this point, try to take 100 / 200mg of thiamine and see if within the next 30 minutes, there is a slight but observable temporary improvement in motor symptoms, this before the next dose of LDOPA takes effect. If you do not use Ldopa you can try it as soon as you feel a little contracted, if even slightly better it is probably thiamine.

[JayPwP in reply to Gioc]

Unfortunately I am not Ldopa responder

[Barry1111 in reply to JayPwP]

I am new so might ask a dumb question. I heard a lecture from UF Parkinson's research team in 2018 that Levadopa needs to be taken with Carvidopa (sp?) or whatever it is called, in order to work. Did you take both or do they combine both now into one tablet?

[JayPwP in reply to Barry1111]

Cardibopa and Levodopa are taken together

[Gioc in reply to JayPwP]

Oh! Ok, but how do the symptoms present themselves during the day?

[JayPwP in reply to Gioc]

My symptoms are pretty much consistent. Rigidity, slowness, posture, speech.

[Gioc in reply to JayPwP]

I understand, I can't help you. I do not know sorry.😐

[JayPwP in reply to Gioc]

Every bit helps Gio... Thank you

[Hidden in reply to Gioc]

Very helpful, thank you

[Gioc in reply to Hidden]

I advise you not to do this test on the first dose in the morning as you would be very deficient in ldopa and not to use benfothiamine as I am not sure if it work fast, use thiamine mononitrate or simple thiamine hcl.

[Hidden in reply to chartist]

Could L-tyrosine and Citicoline help him by increasing dopamine since CL doesn’t work for him? Would Benfothiamine (fat soluble) potentially be better? And Art, my brain is functioning a bit better! I’m only 46. I’m not like my previous self but definitely improved making QOL and researching much better! You have helped encourage me to research deeply and relentlessly and that I can make a difference, I can improve!

[chartist in reply to Hidden]

ccl,

Glad to hear that things are clearing up for you!

If you are referring to Jay, it would be good to finish testing B-1, because if he is a responder, the benefit can be very significant, based on what other responders to B1 have found in terms of benefit. L- Tyrosine and Citicoline are certainly worth testing, but B1 should be the current focus since he has already started testing it. One at a time is a useful approach so that you are able to determine what is doing what.

Art

[Hidden]

Basic (B) - (1) 1nstructions. B1 in the form of thiamine hcl is required for HDT (high dose thiamine) therapy.

Regarding thiamine hcl, it is not a cure. It is at its best supporting carbidopa levodopa. Solgar tablets are choke hazard. Find capsules as they are easy swallow.

Doctor Costantini directed:

Early or mild symptoms - 2 grams daily.

Moderate symptoms - 4 grams daily.

Severe symptoms - 6 grams daily.

Divide into two equal doses. Take first dose at breakfast. Take second before lunch.

I

Before starting with full dose take a small amount and watch for any allergic reaction.

Continue to the GUIDE - click on See All .

[JayPwP in reply to Hidden]

Will try 4grams, thanks Roy

[Hidden in reply to Hidden]

Roy, “It is not a cure”

Did Dr. Constantini think it slows progression? I thought he had evidence / accounts that he believed exemplified slowed progression?

If it is only for symptoms and Im not on CL, perhaps I am not the right candidate and should not be taking it?

[Hidden in reply to Hidden]

I don’t follow that reasoning

[jimcaster in reply to Hidden]

For whatever it may be worth, Dr. Costantini recommended high dose thiamine to me long before I was on medication. For whatever else it may be worth, there is no real way to know whether B1 (or any other supplement) slows progression. For all the talk about slowing progression on this site and all the hopes we all have for such a magic bullet, I don't think there is any substance which has been conclusively shown to slow or stop progression of Parkinson's Disease -- including B1. I still take it because it's relatively risk free and plenty of people swear by it, but it certainly hasn't stopped progression for me.

[Kia17]

Hi Jay

Are you tremor or rigidity dominant?

Can you tolerate green tea or coffee without being restless ?

Do you normally have anxiety?

Do you have drooling?

Pins and needles or pain?

How active are you?

Vegetarian? Vegan?

Cracking and snapping joints?

Your weight?

[JayPwP in reply to Kia17]

Are you tremor or rigidity dominant?Rigid. Traditional meds nonresponsive

Can you tolerate green tea or coffee without being restless ?

Yes

Do you normally have anxiety?

No

Do you have drooling?

No

Pins and needles or pain?

Some pain

How active are you?

Lazy

Vegetarian? Vegan?

Mixed mode carnivorous

Cracking and snapping joints?

No

Your weight?

85kg, 5feet 6inches

[Kia17 in reply to JayPwP]

I would start B1 with 3grs daily divided dose (morning and noon) with 400 mg magnesium without any other B vitamins for a couple of months and then I will add 400mcg Folate daily and Hydroxycobalmin 500mcg x 3 times a week and Niacin (b3) 50 mg 2 times a week.

Removing Gluten, dairy, sugar from the diet .

Walking at aleast 5km daily.

[JayPwP in reply to Kia17]

Will try. Thanks

[Godiv in reply to JayPwP]

Hi Jay, once you’re finished with the B1 test, maybe try the Methylated B multi also. It seems to help balance or some thing. I’m sorry to be vague but I also have problems with feeling like I’m slipping in my right foot and for some reason it seems to help. I suppose because it’s related to nerve signals. But perhaps it would help one of your symptoms. I can’t quite pinpoint what it is but I just feel better when I take it. I’m sorry again to be kind of wishy-washy but I’ll try to observe a little better.

[JayPwP in reply to Godiv]

Thank you for taking the time to respond

[Godiv in reply to JayPwP]

You’re welcome!

[LAJ12345 in reply to JayPwP]

If you aren’t anxious I would slowly increase b1 each week until you start feeling anxious then stop a day or two and go back a dose. If you start needing to pee a lot more it probably means it’s too much as well.

I would try the other b vitamins and magnesium too.

Have you tried the red hat? Seems to help people.

For apathy try rhodiola rosea. But only after getting your b1 right.

Are you on pharmaceuticals. I can’t remember.

And of course I always suggest you try Hardys daily essential nutrients with added vitamers which will replace the magnesium and other vitamins. As it has trace elements and all the vitamins in their correct rations. But still take extra thiamine on top.

[JayPwP in reply to LAJ12345]

Just took 1.5 grams today morning, yet to take second 1.5 grams dose before lunch along with methylated B complex

Non responsive to CL

Update 21 Aug 21 11.40 PM IST:

9am - 1.5gms B1 HCL

2pm - 1.5gms B1 HCL

Lunch

3.30pm - d3 1200iu + k2 100mcg + Methylated Bcomplex + turmeric 500mg

9.30pm - dinner

11pm - Turmeric 500mg + probiotic

11.30pm - Vit C 500mg + Melatonin 20mg

[JayPwP in reply to JayPwP]

Updated

[JayPwP in reply to LAJ12345]

I made a Cossack but could not find 810nm IR, so it only has red light led strip.

I also checked with Dr. Hamilton about sending the Coronet Duo to me, but it is too expensive.

Offered to the bulb as shown in the post by gregorio but received a faulty product that is not returnable.

[gregorio in reply to JayPwP]

Surprised to hear the bulb was faulty, they are quite robust, bought mine on Amazon and they have a good return record. As an update, i can not say for sure if it is helping, thats what is so difficult with all these things we try but my shoulder pain which woke me every night as eased a huge ammount, does not wake me now and as far as I knownothing has got any worse so will stay with it. 20 mins a day or more on my head.

[JayPwP in reply to gregorio]

I got from Amazon and it is imported. I forgot to mention that I received full refund for the bulb,but the bulb was received damaged and therefore I could not use it

[Buckholt]

Obvious question perhaps but have you looked at your diet? There is another recent post about sugar, which causes inflammation and which I’m avoiding. Something to consider?

[JayPwP]

Have not stopped sweet. I know I should

[Hidden in reply to JayPwP]

If you are committed to improving your health you must stop eating sweets. If you are not committed to improving your health you will continue to eat sweets.

There is no way of “sugar coating” this reality.

Next time you eat sugar, think of how you are killing your brain.

You need to change your association. It is a compulsion. It does not bring you happiness. It is a burden.

I’m being very firm bc I care and I know you can do it.

[JayPwP in reply to Hidden]

Yes CCL!!!😊

[laglag in reply to Hidden]

Thanks, keep on reminding us!

[NDLMT in reply to JayPwP]

First time poster here and hope this helps: L-Glutamine (amino acid) can help us to not crave sweets (info obtained from "The Mood Cure" by Dr. Julia Ross).

[JayPwP in reply to NDLMT]

Thanks

[Lizzy9]

Hi JayPwP ~ It took us 4-5 months to get the right (very low for my husband) dose of B1 Thiamin Mononitrate figured out. The regular B1 Thiamin HCL did not work for him. Also, we have added Mannitol to his mountain of supplements. Yesterday I forgot to put mannitol in his morning coffee and his anxiety returned. Then I remembered that I had forgotten the mannitol. Shortly after I gave it to him he settled back down. I have no idea if the mannitol really was responsible for calming him or not. We just keep trying and trying…. It’s a persevering guessing game so don’t give up!!!! And keep doing your research!!!Have a fabulous day!!!

[JayPwP in reply to Lizzy9]

Thanks

[Barry1111]

That is way way WAY too much melatonin.

[chartist in reply to Barry1111]

That is the exact same amount of melatonin that was used in this study in PwP to good effect.

pubmed.ncbi.nlm.nih.gov/324...

This study used 50 mg / day in PwP and barely started to show motor symptom improvement during off time.

sciencedirect.com/science/a...

Art

[Barry1111 in reply to chartist]

The report says the study group was given 5 mg Melatonin twice a day. What did I miss?

[chartist in reply to Barry1111]

Yes, they got a total of 10 mg/day. Jay said he is taking 10 mg in two doses, that is the same as the study dosage of 10 mg/day.

In the second study, this is a direct quote showing 50 mg/day total melatonin dose :

>>> ' The second group received 25 mg of placebo at 12 pm and 30 min before bedtime for three months, followed by four days of washout, and then received 25 mg of MEL at 12 pm and 30 min before bedtime for three months. ' <<<

These two studies are considered high dose melatonin, but they are at the lower end of the scale. This study used 250 mg/day in people with diabetes type 2 and it is more like a true high dose melatonin study and it showed significant improvements in 8 weeks :

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

Art

[JayPwP in reply to chartist]

Art, I am taking 20mg daily

[Barry1111 in reply to chartist]

Sorry but I can't trust a study done in Mexico (your 2nd post). Anyway, it says they were given 25 mg/day.

[JayPwP in reply to Barry1111]

Are you referring to 20mg per day?chartist takes 100mg daily

[Barry1111]

Are you guys saying that Parkinson's patients have much lower levels of Melatonin, or are you saying they need more for treatment? I've read that 10 mg should be the maximum dose for the average person but I don't know about those with Parkinsons. I don't have PD (yet) but my brother did and I feel like I'm having early symptoms. But I took 3 mg once maybe 10 years ago and felt hungover-sleepy the whole next day. Seems to me that 20 or 50 or 100 mg is a crazy amount. Is there a blood test for Melatonin levels?