I finally got to email Dr Costantini on Sunday afternoon and he replied within two hours! If only we had some way to thank this wonderful man!
My only problem is that I have always taken a number of supplements which I wrote out for him. He said to stop all supplements but to continue with Carbilev and other (not Parkinsons) meds. However on the list were calcium, vitamin k, magnesium and vitamin d which were prescribed by my rheumatologist (I have osteopaenic bones with compression fractures in my lower back - among other things). So that worries me a bit.
My question to you all is : do you think I ought to go back to him about that? I really don't want to be asking more of his time if it is unnecessary.
And also I would like to post a full account of where I am now ( not very far in). Should I do that in a post like this, or on my profile or on the other thread which I remember someone suggested? When I go back to him in a month's time it will be a good reference.
I am not good at navigating the site so if anyone gives me directions please remember that I am a kind of computer idiot.
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Celtis
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This is Marco Colangeli, Dr. Costantini’s co-author and research assistant.
Please do not be shy and get in touch with us (through Dr. Costantini’s email address as you have done) for any possible further clarification you feel you need. You as well as all other PWP are entitled to ask any question you might have. I cannot guarantee always swift replies, but we will do our best!
If you are not fully convinced the communication with Dr Costantini was effective please send another message specifying the reasons why you are taking the other supplements are conditions other than the PD, if that is the case. Dr. Costantini and I will consult as soon as possible about your case if you give us further details and will get back at you.
Thank you for your patience and your understanding, we very much appreciate your kind words.
Since I understand you are at the beginning of the therapy, it would be great if you could record a video of your current status aka before the therapy (possibly both motor and non-motor symptoms i.e. pull test) and send it to us (needless to say that it will be treated as confidential but it is fundamental for us to get a better sense of your status, plus to see the improvements later on) and one at regular intervals (1 month, 3 months, etc from the beginning of the therapy). This will help up monitor your improvements.
I have read all replies from the good doctor and been very reluctant to add to it. However I need clarification as I have tried to do it myself and believe I have got it all wrong.
My journey started in 2005. No problems for 11/12 years but always on Madopar. Downhill for 2/3 years ...hard to remember.
Finished trial of weekly injections of Exenatide and believe it has helped me as I have been able to halve my intake of Madopar which was up to 8 x 125 daily. Now down to about 4 and half. I’m off Exenatide for 2 months to see if my condition ‘holds’. So far so good. Can become very dizzy, light headed and clumsy but as I suffer with very low Blood Pressure, not every day but often, I put it down to that.
Now I have put myself onto :
1. Folinic Acid B9 once daily 500 mcg
2. B12 Spray x 3 1500 mcg in total
3. Mega B Q10 containing B5 x 45 mg
Folic Acid B9 containing 400 mcg
Pyridoxine Hydrachloride 50 mg
Cyanocolalmin B12 contains 400 mcg
d-alpha-tocopheral Vit. E containing 16.8 mg
3 separate bottles
I believe a good vitamin regime can only be advantageous.
Thank you for reaching out. I have consulted with Dr Costantini about your case, I do confirm that the therapy with high dose thiamine should be started with thiamine only (in the dosage that Dr Costantini prescribes to each patient individually on the basis of his evaluation of the conditions of the patient). Rarely we introduce other supplements and if so this is done after a first period of evaluation of the action of thiamine.
Please, email us directly at carapetata@libero.it with the following information: age, weight, height, in addition to the info about the disease you stated above. Also, if you could video record yourself that would help the diagnosis and the accuracy of the dosage.
I continue to take all of my supplements, and I take over a dozen different ones. It never occurred to me to ask Doctor C about them. Be that as it may, high-dose thiamine has helped me and continues to help me regardless of all the other supplements I am taking.
I particularly urge you to continue with the calcium, vitamin k, magnesium and vitamin d. I would even suggest adding horsetail capsules for silica, and boron if that is not already in your multivitamin. Both of these are important cofactors for getting calcium out of the bloodstream into bones.
As to your last question, you may post whatever you like, whenever you like - things are pretty free-form here.
I too had a list of vitamins which I took every AM within an hour , or two after the B1. By noon, I felt ready for bed...sheer fatigue. After trying everything else I stopped everything except the B1, and felt much better.
Dr Costantini’s email is carapetata@libero.it and we do not charge any patient for online consultations (never did, never will). Please feel free to contact us directly at any time.
I have emailed Dr Costantini three times and haven't yet heard back. I'm really keen to start the high dose thiamine protocol but don't know what dose to take.
I'm 153cms and weigh 49kgs.I'm 59 female diagnosed 12/17 with mild symptoms I take 1x25/100 sinemet three times a day.
Hello---I haver corresponded with Dr. C on several occasions re B1 therapy. The last letter between us was several weeks ago about the time of his illness. We did not set up a schedule of B1 amounts but I started on 2 g twice a day---once at breakfast and again at lunch. I have without fail taken those amounts now for about 4 weeks. Should I have some improvement by now? Also' I have been trying to locate an MD who who will go with an injection in lieu of tablets or capsules and hope to have you with advice available if this occurs. I hope to soon contact you with an MD. in the wings.
Please convey my best to DR. C and tell him how he remains in our prayers.
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