Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot
 

Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study

http://www.ncbi.nlm.nih.gov/pubmed/2...?dopt=Abstract

More on Thiamine
 

This is a no-brainer. Hope someone with PD insists their doctor try this.
The FDA can't possibly object.

http://www.neurores.org/index.php/ne...rticle/155/156

Note that our PD patients improved dramatically in a short time with thiamine supplements. Days after thiamine treatment, they smiled and walked normally with longer steps, and increased arm swings, and no tremors or sialorrhea was reported. Three patients did not receive carbidopa plus levodopa and cessation of those medications did not effect on their movements. The most effective treatment for PD is levodopa in combination with a peripheral decarboxylase inhibitor (carbidopa or benserazide). In a murine model, dopamine has been reported to suppress mouse-killing aggression (muricide) induced by a thiamine-deficient (TD) diet [8]. This suppressive effect can be potentiated with carbidopa [9]. Patients with PD who have undergone levodopa therapy have significantly higher cerebrospinal fluid (CSF) levels of thiamine diphosphate (TDP) and total thiamine than those patients who were not treated with this drug [1]. Moreover, thiamine deficiency can decrease the concentration of dopamine in the striatum, whereas animals fed on a diet that contained 5% ethanol exhibit increased dopamine turnover [10]. In an experimental TD study, a region-specific vesicular dysfunction (i.e., decreased levels of dopaminergic metabolites) was observed [11]. Dopamine release ii induced by intrastriatal administration of TPP or TDP (up to 1400% and 249% of the basal levels, respectively), reduced dopamine levels in the striatum may occur in cases of thiamine deficiency [12].

Dose?
 

Would have been helpful if they mentioned the dose, and the form of thiamine given via the intramuscular injectionons. Hard to get a doc to try this if you don't know the basic protocol to follow.

calling Sim00
 

Agree that the dosage information would be helpful, lurking. My mom is going to her MDS tomorrow and is going to ask about this.

Based on the last names of the study authors, I think this trail may have been in Italy. If I recall correctly, Sim00 was receiving intramuscular thiamine injections in Italy. Sim00, could you kindly send along an update when you have a chance. When you wrote on July 15, you seemed to be doing well. I hope your improvements have continued.

Would also be good to see a control trial on this at some point. I wonder if one is in the works.

Thanks, all!

:):)

Hi all, I think that intramuscular injections of Thiamine are very helpfull, you can see a good result especially when you are starting this therapy. I feel good in general, but I don't have the countercheck if I don't use Thiamine.
However the dosage is 100 mg twice a week, intramuscular injections. In Italy I use Thiamine called "Benerva".
See also this link: http://www.ultimaedizione.eu/parkinson-eng/
with the last interview with Dr. Costantini, and videos of patients treated, first and after.
Regarding a clinical trial, in the link is mentioned Dr. Fancellu in Genova - Italy.

100 mg twice daily injections
 

In reading the accompanied studies it looks like the dosage given was 100 mg twice a day rather than weekly?
Perhaps you are now on a maintenance protocol?


Hi all, I think that intramuscular injections of Thiamine are very helpfull, you can see a good result especially when you are starting this therapy. I feel good in general, but I don't have the countercheck if I don't use Thiamine.
However the dosage is 100 mg twice a week, intramuscular injections. In Italy I use Thiamine called "Benerva".
See also this link: http://www.ultimaedizione.eu/parkinson-eng/
with the last interview with Dr. Costantini, and videos of patients treated, first and after.
Regarding a clinical trial, in the link is mentioned Dr. Fancellu in Genova - Italy.[/QUOTE]

[/QUOTE]


Hi,
Your observation is entirely correct, but they are two different studies. In any case, I think we can also try to make it twice a day, there should be no side effects (consult your doctor first. I'm not a doctor), for a few days and evaluate their effectiveness. Remember, however, that thiamine to be more effective should not be taken by mouth, but for IM injections.

Before After video's of thiamine treatment
 

The site that SIM00 referred to also has video's of the PD patients.
They are in Italian with English subscript. The younger patients patients seem much improved.
http://www.ultimaedizione.eu/videos-...nts-treatment/

Wonder if you can do this at home? Intramuscular injection. Thiamine sold in vials and insulin injectors, buy online?

http://www.ultimaedizione.eu/parkinson-eng/

Hi,
sure you can do it at home. In my case, my wife, becomes a nurse for a few minutes.
I buy it in pharmacy, and requires a prescription.
Remember not to expose it to sunlight, because more is exposed becomes more ineffective.
I do not use syringes for insulin, but common 2.5ml syringes.
:winky:

I had an appointment with my Neuro today and provided him with the info on this thread about thiamine. He was very receptive and he agreed to try it. He told me he uses thiamine as a treatment for some of his patients with dementia. I will be given thiamine early next week. I am looking forward to trying it. Will keep folks posted.

I would strongly suggest that if you go the oral route, try allithiamine, the only thiamine I know of that penetrates the blood brain barrier. It made an IMMEDIATE difference for me at only 50 mg a day. I tried them all benefontiamine, thiamine, etc) and it's the only one that worked and it worked quite well.

For me it was an immediate improvement in balance and coordination. You only have $20 to lose ..

I have tried to find allithiamine locally, to no avail. I will have to order it. I am looking at trying 100mg thiamine injection protocol. Are you thinking oral route is better? Certainly less painfull and easier.

Allithiamine
 

Hi BreezyRacer, could you provide more details on how allithiamine has helped you with your PD?
I started to do a search on allithiamine and PD. It seems to behave as a Prodrug which, from what I can understand, is a molecule that when combined with a med like Sinemet can greatly enhances the ability of L-dopa to cross the BBB.
Never heard of prodrugs before but it is interesting and may be a great improvement in the effectiveness of Sinemet, meaning that more L-dopa goes to the brain and less to the body with less side effects. I guess I'll buy some.

http://www.sciencedirect.com/science...78517394002716

The plasma levels of DOPA demonstrated no significant differences between DOPA and the prodrugs. In contrast, however, brain levels of DOPA were remarkably elevated following administration of the prodrugs. Among the prodrugs examined, ZiPr-DOPA(P)2 was found to most efficiently facilitate delivery of DOPA to brain and this compound showed 30- and 3.7-fold greater increases in the AUC and MRT of DOPA in brain, respectively, than did DOPA itself. These findings suggest that a redox ring-closure system to a quaternary thiazolium can be used as an alternative chemical delivery system to the brain.

http://www.researchgate.net/publication/51790350

Abstract: L-Dopa is the mainstay of Parkinson’s disease therapy; this drug is usually administered orally, but it is extensively metabolized
in the gastrointestinal tract, so that relatively little arrives in the bloodstream as intact L-Dopa. The peripheral conversion of L-Dopa
by amino acid decarboxylase to dopamine is responsible for the typical gastrointestinal and cardiovascular side effects. To minimize the
conversion to dopamine outside the central nervous system, L-Dopa is usually given in combination with peripheral inhibitors of amino
acid decarboxylase. In spite of that, other central nervous side effects such as dyskinesia, on-off phenomenon and end-of-dose deterioration
still remain. The main factors responsible for the poor bioavailability are the drug’s physical-chemical properties: low water and lipid
solubility, resulting in unfavorable partition, and the high susceptibility to chemical and enzymatic degradation. Starting from these considerations
the prodrug approach has been applied to L-Dopa in order to overcome its metabolism problems and to improve its bioavailability.
The goal of this paper is to provide the reader with a critical overview on L-Dopa prodrugs here classified according to the nature
of the main chemical modification on L-Dopa backbone that led to the formation of the desired derivative.

http://www.ncbi.nlm.nih.gov/pubmed/15328496
http://www.ncbi.nlm.nih.gov/pubmed/21150770

Ashley

My experiences are in this thread below. I should clarify that I do not have PD, though when my symptoms started up, they were very much like PD. It took a long time but I did get to see a really good neurologist, but after much of my symptoms had been taken care of. I was diagnosed with dystonia.

There are a lot of studies around the world on PD and B vitamins and those studies led me in the direction of this thread. I have NOT taken Sinemet, either alone or with allithiamine.

http://neurotalk.psychcentral.com/thread218079.html

In the end I have to say that I had a long term B vitamin deficiency caused by candida overgrowth in my small intestine, likely for over a decade. Since I corrected this core problem and started supplementing with B2 and allithiamine my symptoms greatly improved. I tried other B vitamins as well and they made some difference for a bit but that was likely because a shortage of B2 will shut down the methylation process, which is the conversion process your body goes thru to make a range of B vitamins use-able.

BTW a late post on the thread by someone else said that they have to using higher does of allithiamine to great effect for them. I think he/she was diagnosed with PD. You might want to PM them.

I hope this helps.

And BlackFeather, yes, allithiamine is hard to find. I get mine from Life Extension though it is not made by them. The brand I use is Ecological Formulas.

to Blackfeather
 

Hello Blackfeather

I am very curious about your experience with injectable Thiamine. Did you begin them back in November? I have a friend that will begin treatment injections next week. For the last 2 weeks I have been taking 100 mg of allithiamine and I'm cautiously hopeful.
Thanks
Victoria

I'm curious to know if anyone here is still taking thiamine and if so how much.

Thanks,
MD

A lot of folks on Health Unlocked PD forum seem to be having very favorable response to Thiamine, mostly in pill form. Some are using thiamine injections. I tried thiamine injections 3 times and felt worse. It made me tired, irritable and with a headache each time it was given. I gave up on it. I tried high dose thiamine supplements for 3 months and never saw any improvement. Though lately I'm thinking of giving another try. As for injections, I understand they sometimes use aluminum as a stabilizer/preservatives in in injectable liquid thiamine. Maybe that is the reason I found it intolerable.

Sulbutiamine
 

Worth trying for 6 mo's? Recommended dose up to 400 mg day.



Sulbutiamine (Arcalion) Benefits + Dosage, Reviews, Side Effects - Selfhacked


Astonishing: Parkinson halted by Thiamin. 25 patients have been cured in Viterbo by an Italian neurologist - Ultima Edizione.Eu


Has anyone use Sulbutiamine? - Parkinson'''s Movement | HealthUnlocked



More on thiamine.... - Parkinson'''s Movement | HealthUnlocked....


US5863925A - Use of sulbutiamine in the treatment of Parkinson's disease, schizophrenia, alcoholism, and dysthymia
- Google Patents


https://www.amazon.com/s/ref=nb_sb_n...s=Sulbutiamine


https://www.google.com/search?q=Sulb...nt=firefox-b-1

Certainly a lot of information- but , I read your post to say you hesitate to try it yourself...would you care to share your concerns Ashley? For me I feel a bit reserved because it seems to me that whenever people get into micromanagement of symptoms especially with chemistry eventually other imbalances develop that lands a person deeper in a negative feedback loop. Having said that I rely heavily on a couple of supplements targeted at specific symptoms and am very very grateful for their efficacy.

Kind Regards,
MD

We saw no changes:(
 

Well, we tried this several years ago and noticed not one bit of change. The hardest part was finding a doctor willing to script it, because our neuro was unwilling for whatever reason.

It isn't easy to stab yourself (or loved one) with these B1 injections day after day after day, so if you're going to try this, you might want to get mentally prepared!

I am taking orally Life Extension brand Mega Benfotiamine (B1) 250mg 2x a day plus R Alpha Lipoic Acid 100mg 2x a day and B12 300 mcg .
With these Vitamins and my DBS, I feel "normal". I am trying to reverse or slow down the natural degeneration of PDby regenerating my nervous system. My family has noticed a remarkable improvement.
There is a product out there that combines all called nerve renew.

I can't help but notice the date on this article, and while it's great that this work was done, am frustrated at the lack of progress on pursuing it further. Makes me crazy

the profit engines keep turning.....meanwhile the rats of Nimh are quietly working.....

saying yes to thiamine
 

quick update - I got an immediate positive response to 1st dose allithiamine 50mg though lots of symptoms are fluctuating with a general overall feeling of improvement. I think dose is key. So nice to have the support! :) I will add B2 next to see if I can optimize and finesse this edge a little further.

Kind Regards
MD

Thiamine Deficiency and Neurodegeneration 2017
 

Are there others here that are using Thiamine and do they see any positive results?

This paper states that Thiamine doses of several grams were used in tests.



Thiamine Deficiency and Neurodegeneration: The Interplay among Oxidative Stress, Endoplasmic Reticulum Stress and Autophagy


PD is the second most common form of neurodegeneration in the elderly population, characterized by resting tremor, rigidity, slowness of movement, and postural imbalance [63]. It affects more than 1% of individuals older than 55 years of age and more than 3% of those older than 75 years of age [64]. The loss of dopaminergic neurons in the substantia nigra is a major pathophysiological feature of patients with PD [65]. Several lines of evidence have shown that thiamine or thiamine-dependent processes may be involved in the pathogenesis of PD. For example, lower free thiamine levels in the cerebrospinal fluid were found in PD patients in comparison to normal individuals, while levels of thiamine-derivatives, such as thiamine-diphosphate and thiamine-monophosphate, did not differ significantly [66]. Additionally, the immunoreactivity of KGDHC, one of the most important thiamine-dependent enzymes, was decreased in the substantia nigra of patients with PD, and the reduction seemed correlated with the severity of degeneration [67, 68]. In some studies, thiamine supplementation seemed to improve the outcomes for PD patients. For example, administration of parenteral high-dose thiamine was effective in reversing motor and non-motor symptoms in PD patients [28, 30]. These findings suggest that TD may be involved in the pathophysiology of PD.

Respect
 

I am nothing short of astonished at the depth and rapidity this venue of treatment holds agency.

Todays Facebook post to thiamine group: fyi......

"My initial exposure to learning about B1 led me to try allithiamine - partially because the recommended dose was lower and because it came with cofactors that I hypothesized would address absorption across the blood brain barrier. Also, it was an intuitive call. What I have learned since is that alliithiamine is fat soluble -does that mean it might stay in my system longer than its' water soluble cousin (B1HCL) -or would that be dependent on the individual GI ecosystem? My very first dose I felt my breath ease and drop deeper into my belly! It was wonderful and for the first couple of weeks I felt improvement - more energy, longer sleep, some very light indications of peristalsis awakening deep in my bowel. Another thing I noticed was my craving for sweet lessened. These were so very welcome as have been coping with parkinsons sx for over 25 years fortunately with slow progression (at times). The following weeks I noticed waking in the mornings feeling restless - that would later turn to anxiety and chest pain with a hint of depression-but I also found that my habit for eating sweets and thoughts of worry would make this worse. So, I backed off the allithiamine though I feel even though what started as a feeling of restlessness became an opportunity for me to experience how choices on my thinking and eating and activity habits could feed my problems directlly .I am coonsiidering going to small dose of B1hcl though hesittate because I'm thinking just going lower in dose of the allithiamine may ease the roller coaster ride a bit. Its a bit scary when the ease of breath becomes so easy that not inhaling automatically can cause issues. I respect this stuff. I think I am still feeling benefits of a dose I took over a week ago and what started as restlessness has backed off so as long as I still feel benefits I hesitate to repeat the dose! Am wondering if a barometer for when to repeat dose is tendency to fall......???"


Something this experience has made apparent to me-something I haven't seen discussed even in this forum is respiratory function is a Parkinsons sx!
Makes sense as common cause of death from PD is consumption in the lungs...Our autonomic nervous system must employ some very clever and subtle adaptive strategies that hide this from our general awareness.

Excerpt from a paper written by K.M. Torsney and D Forsyth called "Respiratory dysfunction in Parkinsons Disease" :

"shortness of breath in Pd can be very distressing for patients
and clinicians alike. extensive investigations are carried
out, often repeatedly during recurrent admissions, looking
for infection, pulmonary emboli, heart failure and anxiety.
although these are possible in Pd patients and should be
excluded, clinicians must remember that Pd itself and its
medications can lead to shortness of breath through various
mechanisms. effi cient ventilation depends on several factors
including adequate airways, suffi cient respiratory muscular
function and a chemoreceptor drive to breathing.
Pd can affect each of these to a varying degree. several
patterns of respiratory dysfunction have been described in Pd,
including: restrictive changes secondary to chest wall rigidity
and reduction in lung volume secondary to kyphoscoliosis,
upper airway obstruction, abnormal ventilatory control,
diaphragmatic dyskinesias and pleuropulmonary complications
of medications. in addition, although rare, shortness of breath
is an important non-motor wearing off symptom.
There is controversy as to whether levodopa improves or
worsens respiratory function. This review will not cover in
detail the respiratory complications of Pd but rather look at
the spectrum of respiratory dysfunction in Pd as well as the
effects of levodopa on pulmonary function tests."


Kind regards,
-MD

International attention
 

Much to learn from worldwide research.
Vitamin B1 and Parkinson : The final results of the research carried out by WeAreParky – WeAreParky

I was particularly interested in the part where there was caution for those with heart conditions. I'm curious if they found any correlation to arrhythmia. Also , of interest was the finding that combining oral dose of B1 with magnesium proved more effective than B1 alone.

and this: "Should one decide to start integration of Vitamin B1, we suggest to do so at a time when the symptoms are stable and by simply not altering the medication regime (levodopa), this would allows us to have a clearer picture should new symptoms arise" ...when things go south ....could it also be that treatment of those 20-25 years into pd symptoms may be susceptible to serious complications from this treatment? "To maintain the level B1 near the maximum levels for prolonged periods can cause an acceleration of the biorhythms"


Kind Regards,
MD