I joined today the 1st August 2023. This, because I recently stumbled across Daphne Bryan's YouTube video about her journey with the Costantini "method". That being superdosing of vitamin B1 thiamine. I was able to find ampoules of Thiamine in 50 and 100mg doses, and I have nurses readily available in the "geriatric" complex where I live, here in Cannes, France. As per Daphne's advice, I have started on 2 x 50mg jabs a week in my bottom, and I shall up this to 100mg shots after 6 weeks. I have had 2 jabs thus far.
Astonishingly, I think I can feel a small improvement in my energy level and balance already! I say "think" because I can hardly believe one's symptoms can improve so quickly. I'm acutely aware of the placebo phenomenon. Time will tell.
I do have one isue that the community may be able to help me with. I had a heart bypass operation18 months ago, and since then, I take 100mg asperin tablets daily to thin my blood. This is standard practice. However, Daphne, in her excellent book on this protocol warns of taking thiamine shots and anti-coagulants. Taken together, they can cause a "haematome" ?! She mentions two anticoagulants but not asperine. However, here in France, my nurses consider asperine to be an anticoagulant. Can anyone help me on this please? I would be really grateful.
Thanks in advance,
Dan.
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FoieGras
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Aspirin and clopidrogel (Plavixex) are platelet ( action) inhibitors. They make platelet less able to stick together to form clots which is the body's way to stop bleeding as soon as it happens (rather like a self activating "gloopy"plug). Happens in the first hour.
Anticoagulants strictly speaking block some chemical factor within the body in the reaction to bleeding which has several 6 or 7 steps (and 12 such chemicals/proteins) This process takes time (over 1 to 12 hours or more)
What is important is that inhibiting platelets will increase your risk of bleeding.
Just to add to this NSAIDs (non steroid anti inflamatory drugs) like ibuprofen Brufen Advil etc , diclofenac Voltarol etc, as well as NAC (n Acetyl Cysteine) and many other drugs have platelet inhibitory function.
Thiamine can cause spikes in blood pressure which can increase risk of bleeds within the brain.
It is important to remember that even more systems in the body interact at any one time within the body can influence ANY body physiology process.
Extapolating from one perspective is a dangerous game.
DOI Former intensive care / critical care physician
Golly, who'd a thunk it! My take on this is to continue with the Thiamine & Asperin. I'm well aware of the bleeding issue with Asperine. But I'll keep an eye on my B.P. in future. I've just had my third jab. Can this really work like Daphne says? I think I can feel a small improvement very day. I feel giddy with excitement. Thank you Pearlette for your professional opinion. This site is going to be good for me as here in France, the Neurologists are L-Dopa distributers and nothing more. Now I have a community to bounce ideas off.
I do understand where you are coming from on this, but in my defence I would say the following:
I chose the injection method because it uses the minimum amount of Thiamine. taking pills and working up to 4000mg/day sounds a lot to me and gives me pause. I'm taking 50mg twice per week. Daphne is unaware of anyone on this dosage ever having side effects. She feels that 100mg twice a week should be sufficient to attain a "good" result. So these dosages will guide me. Don't forget these doses were originally recommended by a Neurologist
At the moment I'm gobbling 700mg of carbidopa/levadopa daily plus 55mg Sifrol for RLS. That's no mean amount either. With all this, dyskenesia is a distinct likelyhood. I reckon the minor risks of Thiamine (if any) outweigh the major risks associated with levadopa. Don't forget, Daphne has reduced her levadopa to 200mg per week! But of course, levadopa is a medically recognised treatment for PD. Nobody ever got jailtime for following the rule book.Personally I put more faith in Daphne and her years of exerience, and Cosentini with his thousands of patients on this treament, than the medical regulators.
A final point. This site is called "Cure Parkinson's". It's an oxymoron, at least at the moment. But we all know it is the goal, not a fact. In persuing that goal, I for one am prepard to give this a shot. I've just had my fourth jab and so far, so good. My symptoms essentially made my life hell. Accepting the staus quo is really not an option. I have to consider any rational option to improve my lot. And that is what my neurologist needs to understand and stop feeding me ever more quantities of levadopa.
I was saying that the General Medical Council disapproves of doctors prescribing for themselves . I therefore could not manage to get injectable thiamine for myself. I cannot prescribe a course of antibiotics for myself , family or friends except in unusual circumstances. The "punishment" is not harsh enough to be jailed ! LOL ! There are other repercussions which I wont bother to elaborate on.
I tried oral thiamine 5 years ago but could not tolerate more than 500 mg per day maximum for about 2 months but soon need to cut down to 20mg or sometimes need to stop for a month. I got a modest boost of energy in the first 7 months and now often feel worse if I take more than 100 mgs a day.
I have had symptoms since I was as young as 7, and now in hind sight realise that I found various mechanisms to manage dystonia by myself. I also realised I could not do standard aerobic exercises (running, cycling) but could walk miles, climb trees and many other physically demanding things.
I certainly did not accept the status quo . I saw a neurologist only after several months of rapid decline. I still work around 50 hours a week at 62.
I have learnt to work with my own physiology : I use anywhere between 200 to 900 mg of levodopa per day .Mostly it is around 500mg maximum. I use my commute to do cerebellar modulation exercises : standing on 1 leg on a speeding train amuses other passengers. I have tried vibration long before anyone talked of vibrating gloves.
I started having dyskinesias within 2-3 months of taking levodopa (at a maximum dose of 200mg a day. I now barely ever get them as I have learnt to estimate my requirements. I am now working on teaching myself to balance my autonomic nervous system drawing some inspiration from the phenomenon of paradoxical hyperkinesia.
As far as I am concerned I have already won. I still have the life I lived in my 40s apart from giving up drinking alcohol (I cannot appreciate good wine since I lost my sense of smell) and I drink cheap coffee as a fine roast tastes the same so its not worth the effort or expense . Like I said I was achy teenager, had cramps as a child, had cramping calf muscles in my 30s and 40s. But then I tell myself that at least the cramps are reversible ( 25 to 50 mg of levodopa sorts it out in 30 minutes)
Without meaning to be offensive the tone in your reply suggests that you are approaching this as a bit of a battle. The downside from that is that your brain fires up more chemical cascades (histamine, norepinephrine and acetyl choline, glutamine ) that distract from the processes all that thiamine is intending to augment. It also needs to recalibrate all the signalling within the brain.
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