My husband was diagnosed with parkinson in 2016 at the age of 33 years..
His main symptoms are stiffness and slowness in his right hand and leg .
He was on sinemet plus 125 4 times a day but suffering through dyskinesia which is sometimes more and sometimes manageable..
Recently we have replaced 3 doses of sinement with mucuna pruriens powder. He responds to the powder fairly good as he responds to sinemet but that has not helped much with his dyskinesia.
I have read a lot about Dr constantini's HDT and would like to give it a try but have got no idea how to start with that..
Is there anyway we can contact Dr constantini and start the therapy under his supervision..
We stay in India.
Also i have read some posts where people say they have stiffness worsened after starting HDT.
Pls reply with your valuable suggestions
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Sanay
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The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Dr. Costantini is not available because of his own medical condition, but you can lots of information by using the search function on this site. Click the symbol which looks like a magnifying glass and search for posts regarding thiamine, B1, Costantini, HDT, Thiamine HCl, etc.
God bless you both. I was diagnosed at 48 and I was unable to absorb the shock. You seem to be handling it better. Your husband is lucky to have a good and wonderful wife.
My advice: go mainstream and the best way is to exercise. Follow John Pepper. He advocates fast walking. I believe that High Dose Thiamine is a fad and my doctor won’t even discuss this. Dr. Constantini is unavailable anymore because he had a stroke. I am also Indian but living in the USA.
Did you get a second opinion? If not, get one soon.
We did go for second opinion and also for dat scan in usa..it confirmed the diagnosis..unfortunately we are not able to find a good neurologist here in india ..all of themhave no answer except sinemet dose increase which again leads to dyskinesia .
We found a movement disorder specialist who wanted us to go for DBS at the stage of our diagnosis which was really strange and when we didnt opt for it he didnt entertain us anymor..
Also can u pls explain the statement "Thiamine is a fad"
There’s no proof that Thiamine works. I am sure that my statement will cause some consternation among other forum members who are willing to drink the koolaid. If you want to try it, please do and proceed with caution and please monitor blood pressure.
Anyways, I’m sure you will find a good doctor in a major city like Chennai or Hyderabad. I think DBS is popular in India because they have been so good at the procedure and they make so much more money on it. I will advise you to wait. I think that your husband is too young for the procedure. The future is going to be better. Most research that is going on right now will have some answers in the next few years.
Yes we are indeed from hyderabad and have failed to find a good supporting neurologist..
Yes we will wait definetly and hope for the best..
Im very skeptical about the thiamine therapy but the only thing that attracts me is that it will stop the progression to some extent since we have a much longer way to go with the disease..
I would try a doctor other than at Apollo if that is where you are going. The motivation is quite different there. Also, sometimes you have to choose between equally bad options. In Chennai I believe that they are pushing Apokyn which is an injection and it is not supposed to make you dyskinetic. However, my doctor is not supportive of it because it is so short lived and it causes a lot of nausea and vomiting. I believe that you will have to get the anti nausea injections several times before you can even start the medication. So, please research it if you want to try the option.
I do concur with park_bear with the suggestion to try controlled release Carbidopa Levodopa. Worth giving it a try.
Yes. You can try extended release on your own and you can ask your pharmacist. There are many theories about why dyskinesia happens and how to even tell the difference between dyskinesia and dystonia. I like park_bear’s theory.
Can you please describe your observation of the dyskinesia that your husband is experiencing?
It is only in his right side which is obviously more effected..it is kind of forceful movement of his hand ( the palm and wrist area) which is not under his control kind of twisting and twitching and also his arm seems to come more closer to his body and his foot seem to move involuntarily with much pressure.. it becomes very difficult for him to eat and to use his laptop ( he is a computer programmer)
Also this happens more evening and sometimes it is mild and sometimes more on the same dosage..
If it is happening towards the evening then I think that he is over medicated. Start reducing the amount of Sinemet that he is taking towards the evening and see how it goes.
I have the same problem with my medication - Rytary, which is a form of extended release Carbidopa/Levodopa. It is a very recently introduced version that is available only in the USA and is extremely expensive. Rytary is prone to a phenomenon known as “stacking” and I accumulate enough Rytary in my blood stream after the third dose that unless I start reducing my dosage, I will be in trouble. I start reducing my dosage in the afternoon and I saw the dyskinesia disappear.
I think that your husband being so early in the disease progression is probably accumulating too much dopamine in the system. He might be helped by a dosage reduction in the afternoon.
I think there is substantial evidence that high dose thiamine is beneficial. Dr. Costantini was a legitimate neurologist with hundreds, if not, thousands of patients who benefitted. He has a YouTube channel with many testimonials and a website highdosethiamine.org. To each his own, but I have been taking high dose thiamine since within three weeks of being diagnosed in May, 2018. I'm not on medication, have no disturbing symptoms except poor handwriting and no one would know I have Parkinson's. It's early and I don't know how much credit to attribute to thiamine, but I think it's a low risk/potentially high reward option. That's just my experience and opinion...
Immediate release Sinemet seems to get prescribed by default instead of the controlled release version, Sinemet CR. The immediate release version results in an initial flood of levodopa which is prone to causing dyskinesia. The controlled-release version provides a much more even flow of levodopa and therefore is less likely to result in dyskinesia. There is also a generic version known as carbidopa/levodopa ER.
I have also benefited from high-dose thiamine and do recommended it.
Dyskinesia is the result of too much levodopa. The only solution is less levodopa. That means either going to a timed release version prescription levodopa medication, or, in the case of Mucuna, taking smaller doses, perhaps more frequently.
As to getting started with high-dose thiamine, dosing information can be found here:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Dr. Costantini is currently not available to do email consults since having a stroke at the beginning of this year and it does not appear that he will be able to do those email consults anytime soon.
Here are a pair of very comprehensive links that will answer many, if not all of your questions regarding HDT :
One thing that several members have reported on this forum is that adding B-1 to their existing C/L dose is that they were able to lower their C/L dose after the addition of
HDT/B-1.
C/L is noted for causing dyskinesia especially as the C/L dose is increased, so if B-1 is able to allow the C/L dose to be decreased in some people, then there is the potential for decreased dyskinesia with the addition of B-1 in some situations.
Regarding stiffness related to HDT, Dr C. said there is a possibility of stiffness if the dose is too high, but stiffness is a common symptom in PD as well as many other health conditions also.
Here is a list of benefits that have been reported by individual forum members over the past two years :
Have you explored the Ayurveda options. Heard it helps and there are 2 places where you can get treatment, aryavaidyasala Kotakkal and vaidyaratnam oushadhasala thaikat mooss.
We have tried some medicines from kotakkal for a period of time but they didnt seem to help much..we did not get admitted in their hospital and try the long term massage treatment
If you can't easily get hold of continuous (extended) release Sinimet then try halving the immediate release tablets and taking the half-tablets twice as often (e.g. every two hours) - the total dosage remains the same but the brain experiences a smoother concentration profile.
I was diagnosed with PD this spring , tried Syncapone 100 (from India) with worsened symptoms> I then tried curcumin with some relief. I'm still on a vitamin regimen with slow improvement. This past week I watched a TED talk by Dr. Terry Wahl about feeding mitochondria with a Paleo diet. My thought based on her talk is that brain neurons producing dopamine are dying because of poor nutrition . I'm going to start this new diet in a few days. She claims that our bodies did evolved with a Paleo diet and so we are suffering from degenerative diseases because of our modern diet. Dr Wahl has totally recovered from debilitating MS with a paleo diet. I recommend you watch this video. I will also let this forum know how I'm responding with the Wahl's Protocol.
I’ve found no problems taking B1. I started w 2 gm but have backed off to 1500mg. Why you ask? I believe the less meds we take the better. I’ve been using the Dr Marti Hinz protocol (amino acids) only , and have cut that by 2/3 also, 1 amino acid shake a day now. It’s not as easy as swallowing a couple pills , but come to think of it, I’m only taking 4 pills other than my B1. Am I all that I once was or could have been, no, but I’ve got Parkinson’s and I haven’t heard of anyone that gets all the way back. I’ve only had it for three years, so still in the honeymoon phase. Some honeymoon? I credit The B1 for allowing me to back off the number of shakes I have to take. Full disclosure, I’m also using a Vielight, and what part that plays who knows?
mon épouse a été diagnostiquée parkinsonienne il y a 4 ans. Elle a aujourd'hui 38 ans et aucun traitement, hormis une adaptation de l'alimentation (suppression du gluten et lactose) prise de traitement naturel et rasagiline depuis 2 mois. Les difficultés sont de plus en plus importantes au quotidien et elle se fera hospitaliser en décembre pour entamer un traitement. J'ai essayé de contacter le dr Costantini après avoir consulté votre site mais sans résultat. Nous envisageons de démarrer un traitement avec de la thiamine mais n'avons aucune idée des doses. Mon épouse mesure 1m50 et pèse 42 kgs.
My wife was diagnosed with Parkinson's disease 4 years ago. She is now 38 years old and no treatment, except an adaptation of the diet (removal of gluten and lactose) taking natural treatment and rasagiline for 2 months. The difficulties are becoming more important daily and she will be hospitalized in December to begin treatment. I tried to contact Dr Costantini after consulting your site but without result. We plan to start treatment with thiamine but have no idea of the doses. My wife is 1m50 tall and weighs 42 kgs.
Voici ce que Chartist explique ci-dessus concernant le contact avec le Dr Costantini :
Dr Costantini is currently not available to do email consults since having a stroke at the beginning of this year and it does not appear that he will be able to do those email consults anytime soon.
Here are a pair of very comprehensive links that will answer many, if not all of your questions regarding HDT :
healthunlocked.com/parkinso...
healthunlocked.com/parkinso...
One thing that several members have reported on this forum is that adding B-1 to their existing C/L dose is that they were able to lower their C/L dose after the addition of
HDT/B-1.
C/L is noted for causing dyskinesia especially as the C/L dose is increased, so if B-1 is able to allow the C/L dose to be decreased in some people, then there is the potential for decreased dyskinesia with the addition of B-1 in some situations.
ncbi.nlm.nih.gov/pmc/articl...
......
Et voici un neurologue qui collaborait avec le Dr Costantini, qui accepte des patients:
Dottore Roberto Fancellu is prepared to provide ongoing support of your Thiamine B1 protocol by e-mail, but at one condition: that you first allow him to assess your Parkinson in the context of an in-person consultation at the San Martino Hospital in Genoa, Italy.
Dottore Fancellu has practiced neurology for 22 years and treated patients with Parkinson for 20 years. He has been associated with Dr Costantini’s Thiamine B1 protocol since the start of its development in 2011. He is fluent in English
....
Et voici le site Internet du Dr Costantini où vous trouverez réponses à vos questions:
You could also consider using Dr. Laurie Mischley at Seattle Integrative Medicine. She is passionate about working with PD patients and works only with PD patients. It will take a couple of months for an initial visit (online/video), but it is worth the wait. John
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