Curing PD by using Dr. C's Thiamine therapy

[ShaliC]

Am very keen to try Thiamine therapy for my husband. Sadly our Neurologist has not backed it. Is there anyone near me who has used it successfully?

[tid1]

Since this can be done with just over the counter supplements, you could probably just have him try it anyway.

[Hidden]

ShaliC,

HDT is not a cure, to be clear, but it has helped a lot of PWPs. You don't say where you are located.

Art

[ShaliC in reply to Hidden]

I am located in Bangalore, India and would really appreciate if I can be in touch with patients in India who have had success with Thiamine

[Hidden]

I am sad for your husband. He needs you now more than ever the Neuro sceptic. A Neuro who has not studied or even read about Doc Constatini, a nobel neurologist.

[RS313]

I too talked to my Neurologist who read up on it and said that she questioned it only because there were no other studies except from Dr C and his associates that showed any real results. she said she wondered why if his studies were proven why other Drs had not ran studies and showed their results. she found it strange that he was the only one doing this.Her words not mine.She did say if i wanted to try it she was ok with it but she would not put her seal of approval on it.It was my choice but that she did not want me to think this was a cure nor would i ever be able to stop my meds. She is very open to trying things normally but she did alot of reading about this and this was her opinion on it. I have read that several people have had results on here and i am so happy to hear that i may try it after some more watching and reviews on here.

[Hidden in reply to RS313]

RobynS,

If your doctor looked a little harder, she would find that there was another medical group in the US that was performing the same patient testing of HDT at around the same time as Dr. C and their results were similar. One main difference was that they experimented with even higher dosing and more frequent dosing in some cases.

I contacted them to see if they would treat my friends with PD, but unfortunately the lead researcher passed away and at that point the research stopped. This is the group that was testing HDT in patients in California:

ncbi.nlm.nih.gov/pubmed/223...

Art

[munchybunch]

I don’t even mention to our neuro about b1 as I know what the reaction will be! Just go ahead and start!

[Hidden in reply to munchybunch]

munchybunch,

I understand your reluctance to tell your husbands neurologist about his success with HDT. You don't want to have to listen to the negative response, but in order to effect change and get HDT out into the light of day, as much mention about it as possible will be a positive step in that direction. If your husbands neurologist hears about HDT from three patients who have noticeably improved, he may "quietly" reconsider his stance against HDT or at least be slightly more open to it. A change has to start somewhere. Lastly, it is one thing you can do to thank Dr. C for his efforts toward his patients around the world including you and your husband! This is something that Dr. C would really appreciate!

Thank you!

Art

[jimcaster]

It's not a cure, but if you do a simple search on this site for thiamine or B1 or Costantini or if you look at Easilly's posts with regarding who is benefiting or Q and A, you will find that many of us ( including me) have benefited from high doses of thiamine. Good luck!

[Dap1948]

My neuro, who was cautious about mucuna initially, was totally for high dose thiamine. She said it was a tried and tested treatment for recovering alcoholics, I believe she said, so would be perfectly safe.

[Despe in reply to Dap1948]

Dap, are you taking just MP? If so, what brand name and % of L-dopa? Thank you!

[Dap1948 in reply to Despe]

I take a mucuna tincture made fresh by a man in Hampshire UK. He makes it from organic seeds from India. See herbactive.co.uk. A teaspoon (5ml) provides up to 70mg ldopa. I take 2x teaspoons of this tincture and 2x 50/12.5mg madopar. As you will see I'm not on a high dose for nearly nine years diagnosed.

[Despe in reply to Dap1948]

Thanks, Dap. My husband is not on any meds, just Mucuna extract, 20% L-dopa and vitamins/supplements. Neuro at Mayo didn't prescribe any meds yet, maybe a year or two down the road, he said.

[Delfino]

Io sto prendendo 3 grammi di tiamina al giorno da più di un anno, e i risultati sono sorprendenti per me! I sintomi sono regrediti oltre il 50% e con un supplemento di 1 pasticca e mezza di Sinemet, a volte mi sembra di non avere il parkinson. Non dare retta a quel neurologo, contatta il dottor Costantini!

[Gioc in reply to Delfino]

Traslation:

“I'm taking 3 grams of thiamine a day for more than a year, and results are amazing for me! Symptoms have regressed over 50% and with a supplement of 1 tablet and a half of Sinemet, sometimes I do not seem to have the parkinson. Do not listen to that neurologist, contact Dr. Costantini”

[1rocketman]

My husband, who is 2 years into his diagnosis, had his follow up appointment yesterday with his doctor. I mentioned that I had my husband on B1 therapy that we started without a consultation from Dr. C. In Italy. While he had heard about it, he thought the information he read was inconclusive, but gave us the go ahead and try it for 6 months to see if it helped. He reminded me that it wasn't a cure, but if we thought it helped he was fine with it. I told him my hubby was taking 2 grams a day (two 500 mg at morning and afternoon). I say go for it, you have nothing to lose.

As background, our doctor said my husband is still a high-functioning PWP. He boxes twice a week, golfs once a week, runs when he can (I enter him into 5k races to keep him motivated), we walk our dog everyday, and does other miscellaneous therapies (hand massages, etc.)... when he's on an off time, he jumps on the treadmill, which helps.

My husband's issues are numbness in his hands and forearms, and general weakness in his arms, occasional tightness in his jaw and occasional softening of his voice. Due to the constant numbness (the severity comes and goes, he has some dexterity issues, and he is slower in his movements.

His drug regiment had been slightly adjusted (he was having more off time), from taking his Sinemet from 1 pill at 6 am, 2 pm and 10 pm to taking his dosage during his waking hours only, so now it's 1 pill at 6 am, 12 pm and 6 pm, and no dosage before bedtime. This makes so much more sense to us since he has no problem sleeping, but could use the boost throughout the day. We are in agreement with our doc to hold off extra medication for as long as possible.

We love our Doctor and trust his advice. Since we read so much about new therapies, we often grill him for information to see if he is also on top of latest findings and he seems to be. His own mother has PD, so he is highly motivated. He seemed hopeful and positive that there will be some medical breakthrough coming at some point in the future. He is involved in a few clinical trials; one, drug-related is in its second phase of testing. Our job, as PWP and caregivers, is to stay healthy and fit for as long as possible, while we wait for something to happen in the medical community, but we can still be our own advocate for what we need to get through the day. My husband has only been on B1 for a week, but we will keep it up for 6 months to see if it helps with his annoying symptoms.

[ConnieD in reply to 1rocketman]

What type of Sinemet does he take and at what dose? Thank you

[1rocketman in reply to ConnieD]

He takes a cheaper, generic Sinemet comprised of 25 mg carbidopa and 100 mg of levodopa. He takes 1 pill 3 times a day... sometimes he'll pop an extra if he's feeling more off than usual, but with our doctor advising he takes his doses during the awake period, we are hoping he'll have fewer off times. He has no problem sleeping at night.

[Cycling8]

I sent Art's (easilly) summaries of HDT to my Movement Disorder Specialist to address this at our monthly support group meeting. His only criticism of HDT was that there hasn't been a double blind study to prove if it is effective. He thought it was safe to try because excess thiamine is not toxic since it is eliminated in your urine. I started on HDT one week ago. No miracles yet but I thought I read in one of Dr. C's responses that it usually takes 40 days.

[munchybunch in reply to Cycling8]

My husband took months to improve so don’t stop!

[Cycling8 in reply to munchybunch]

Thanks for letting me know that. I won’t stop. My biggest issues are balance and anxiety so I do hope they improve.

[ion_ion in reply to Cycling8]

B1 helped me with those after a week.

[Cycling8 in reply to ion_ion]

That's encouraging. Thanks!

[Cycling8 in reply to munchybunch]

It has been two months since I started on B-1 and I have seemed to reach a plateau. How long did your husband take to get the full benefit of HDT?

[Hidden in reply to Cycling8]

Dr. Costantini suggests that full benefit is seen by 6 months, but some members have reported benefits increasing beyond a year. It varies considerably from person to person. Some people notice benefit after their first dose while some have reported no benefit until beyond 3 months.

Without the videos, regular push tests and UPDRS testing, it is easy to think there has been little to no benefit. This is a very common phenomenon that has been reported with regularity.

Here is all the information needed regarding HDT / B-1 / thiamine :

healthunlocked.com/parkinso...

Art

[Cycling8 in reply to Hidden]

Thanks Art. I re-read your posts and it increased my hope again. You mentioned in one of your posts that those who take magnesium in addition to thiamin tend to do better. Dr. C didn’t mention taking that supplement to me.

[Hidden in reply to Cycling8]

Yes, one reason he does not mention it in initial and early consults, is because it is easier for him to find your optimum dose when there aren't other supplements which may "cloud the view" of how you are responding to HDT, but at a later date, he may suggest it as it has been additive for some people because magnesium works with thiamine to help convert it to its active form, plus magnesium has shown an assortment of benefits in PWPs which I discussed a little in another post here :

healthunlocked.com/parkinso...

and here :

healthunlocked.com/parkinso...

I'm pretty sure there is mention of some of this on the HDT FAQ page here:

healthunlocked.com/parkinso...

Art

[Cycling8 in reply to Hidden]

Thanks Art! You are always so helpful and I appreciate the time you put into your answers.

[Hidden in reply to Cycling8]

The other thing to consider is whether you have reached your optimum dose yet. Does Dr. C think you are there yet or do you need further tweaking? He relies heavily on the push test during the HDT testing period.

One thing that I recommend , but Dr. C does not, is to make other videos just for your own reference that are much much longer than the short clips that Dr. C requests. These can be looked back at after months on HDT to give the HDT tester a better reference than the short videos that you send to Dr. C. The personal videos should encompass more activity than just walking, such as getting up and down from a seated position, eating, talking, exercising etc. It can often times be very informative to review a longer self video months after starting on HDT!

Art

[Cycling8 in reply to Hidden]

Art, using the DeeplL Translator for Dr. C's email, translated to "continue the dose that helped you until today." Google translates his Italian to "continues the dose that has helped you so far." I took both of them to mean to that I had reached my optimal dose of 1 gram.

On the push test I took before I started HDT, I scored a 2. My husband had to catch me to keep me from falling. Two weeks later the first time my husband did the Push test, I scored a 0, taking a half step backward with my right foot to maintain balance. We were both so amazed at the improvement that we did the Push test again. The 2nd and 3rd times, unfortunately, I scored a 2. The 4th time I scored a 0 again. I don't have videos of the push test because he couldn't take the video and do the test at the same time. I do have videoes of me "walking" and talking. Thanks for suggesting the other situations to take videos.

[Hidden in reply to Cycling8]

Yes, it sounds like he wants you to stay at that dose for awhile longer and I would take that to mean that he feels you are either at your optimal dose or close to it.

Art

[bark6]

what is HDT, please?

[Hidden in reply to bark6]

HDT = high dose thiamine

healthunlocked.com/parkinso...

Art

[dcpambrose]

have you started B1 hcl?What was the result?