I have been pondering this question for a while. Does anyone know?
Is it because they don't have Parkinson's, is it because their methylation cycle is not broken, is it because they started on too low of a dosage and never increased it?
Any ideas would be appreciated. Mary
Many can be described as nervous nellies. They are so sceptical that their symptoms or reaction "readings" are faulty. They quickly leave the protocal.
But the opposite is also true -- that people are too quick to grab onto the passing fad.
While I believe B-1 is helpful for me, that I cannot clearly ascribe benefit to it, like you can, I don't attribute to my being skeptical about B-1. I was hoping like hell it would work for me. (I go through the rigmarole of 2 injections/week + 500 mg orally + multiple B every other day.)
Yes, I am definitely stumped. How long have you been on it? Have you stopped it completely for a while to see if you are getting a benefit?
I started at 2 g, twice a day March 1, 2018 and tinkered with my dose for the following 6 months, then September 1, I went to twice a week injections. I have not stopped for a while. I do believe B-1 is more beneficial to more people than anything else I know of. I also believe it helps most of us even though we can't discern a benefit. In consideration of its cost and risk, I see no reason why every PWP shouldn't try it - - for at least 6 months. I wonder if it's benefit correlates to those who were deficient?
That is very interesting. That the DAT scan shows an improvement. Nobody talked about it before. Mary
Thanks for the link, looks interesting.
Only the good Lord knows and she ain't saying.
We might be able to figure it out for ourselves, though. It is possible to make neurons and even brain organoids from patients' skin cells; these could be used to study and compare thiamine metabolism in responders vs. non-responders.
Hi Gio, Just out of curiosity, have you recently had a new DAT? And if so were the obvious changes wither positive or negative? Or did it remain the same?? I have not had a DAT, just many MRI. Can they see change in a DAT? Same would be a good sign in my book if they can see change...random thoughts
Sorry, LMl,
I answered you above with Parkie13 who has a similar question.
But I do not know the accuracy and sensitivity of DATscan and I do not know if it is such as to detect significant changes before 5 years. Many American citizens come to Italy to do this test because it costs much less than in other countries as the most authoritative Italian neurologist here says, and I quote: "The DATscan in Italy has a cost of 800 Euro. It is free if the patient already has an exemption for pathology, otherwise he will pay 76 Euro ticket (in Lombardy). In the United States it costs 6000 dollars. Some American patients come to Italy and spend a week's holiday in Venice with what they save (true story)." parkinson.it/varie/risposta...
In the United States my DaTScan was about $8000 total. The radioactive material was about $6000. Thank goodness for insurance. Unfortunately it turned out inconclusive. No matter HDT is working.
Here they say it costs € 1500 all inclusive, next year to September 2020 I'm at my fifth of Thiamine, I could think of making one out of my own pocket because no doctor will prescribe me a second comparative datscan.
Since I tend to gather posts about HDT, a lot and I read a lot on this forum and elsewhere, I can see a couple of reasons why HDT does not help everyone who tries it.
First and foremost, no drug, no supplement, no alternative treatment and not even exercise works for every PWP the same and sometimes not at all for some. As a basic example of this, consider Sinemet, a standard treatment for PWP for many many years. I can't begin to count how many times I have seen it posted here or elsewhere that it not only did not work, but it made the patients symptoms worse or even caused hallucinations in some people or orthostatic hypotension or dyskinesia in others. Sometimes this is due to an incorrect dose or it just does not work for some people the way it does for others. This is a fact of life in the world of drugs and supplements and to think it is going to be somehow different for HDT, may just be a wrong way to look at it. When one drug does not work as hoped or expected, doctors will try the next drug that they feel might work based on their experience and understanding of the problem, but the fact remains that sometimes things that work for others may not work the same for all.
In the specific case of HDT, it has already shown a propensity to have a delayed response in some people and this has been made very clear by the reports on this forum because members have reported it taking three or more months to start to see a single symptom improvement! If that is the case for some, then it is likely to be the case for others. With that potential possibility in mind, how then can you try HDT for 30 days or 60 days and declare that it does not work for you with certainty?The only true conclusion that can be drawn from that scenario is that HDT did not seem to work for you for the period that you tested it and that would be an accurate statement, but to just say that it did not work for you period, may be a premature conclusion that may be wrong. What if you are actually one of these delayed response people and another 30 days or more may have shown a different response? Dr. Costantini feels that B-1 possibly repairs certain cells. If that is a correct assumption on his part, if there are a large amount of damaged cells to be repaired, it could significantly add to the time before meaningful results may be seen. Another issue is the condition of the gut which could easily affect absorption of HDT or anything we ingest and this could easily explain why his intramuscular injection patients seem to get a significantly better and more consistent response to HDT IM over HDT orally.
Many members have reported benefit in as little as minutes after receiving an HDT IM injection and even those using oral dosing have reported benefit as soon as the first day of their first oral dose and for them this is great, but for someone reading one of those posts, it is very easy to become discouraged, if they are on their 46th day of oral dosing with no apparent benefit yet. That may be just enough to convince themselves that they are not going to respond to HDT and then just give up on it, possibly prematurely. Clearly HDT, nor anything else, works for everybody exactly the same.
In my opinion, because of the potential benefits that HDT has shown in many PWPs and other neurodegenerative issues, combined with a very good safety profile, it is worth making as much of an effort as is tolerable for the individual to see if it can work for them.
Art
I have tried HDT oral, sensed no improvement. I'm now trying 100 mg 2 to 4 timed per day and am noticing improvement.
Hoo-ray 4 U.
Well put, as usual.
Art, you make many great points. I hope that some of the so-called non-responders will consider taking it for a while longer are will start again to take thiamine HCL. Mary
At the same time, I've been taking IM thiamine for well over a year now, under Dr C. supervision, with no decisive amelioration except for a few miraculous days after the first injection following a wash-out.
I don't know what to do, even though I won't give up.
You might try switching to oral dosing where you have more flexibility of increasing dosage. If you are on 2 IM injections per week try increasing to 3 per week. Just my suggestions.
Good question Mary and LML, do you like to win easy? The datscan is an expensive test and is normally prescribed only during the diagnosis phase, it also measures the disappearance of dopaminergic cells and it is therefore recommended to repeat it shortly in a research that aims to regenerate cells. I know that Dr. C was expecting second datscan from people who had been in HDT for more than 5 years, but I've never seen anything published.
I think it may depend if other nutrients are missing too which may depend on condition of the gut, genes or diet. The body repair may use thiamine but quickly run short of something else. Maybe another vitamin or a mineral. Then until that is also topped up the repair is halted. So maybe for people where it is not working may need a good multi to see any more progress. Just a theory!
What do you mean by l-dopa is always a problem?
Thank you for your reply Mary
Not everyone with PD suffers from constipation. When constipation is treated many PWP have an improvement in symptoms. This I believe supports the theory that PD may start in the gut. B1 in high doses relieves constipation.
Having said that I’ve included real Licorice Root infused in my water and had further reductions in symptoms and zero constipation. Read up on it cuz they’re some warnings but it works very well for me. I make a weekly batch and take breaks after two months where I switch to infused cinnamon water for a week. Buy it all on Amazon.
Life is near normal for me, no pharmaceuticals. Just Mucuna, B1 and a few other powders and supplements.
Great balance, drive everywhere, shop groceries, farmers mkt., malls. Travel and go to restaurants often. Remodeling my house. Running my company 30 employees. Glass of wine at the end of my day. Meditation Dr. Joe Dispenza.
Physical PD symptoms began early 2015.
Keeping it simple.
Constance
Constance,
You just keep getting better and better! Congratulations! 👏👏👏
With licorice root, it can be quite helpful, but does tend to push blood pressure in an upward direction in some people so for those with hypertension or other blood pressure issues, it may be prudent to check with your doctor and monitor your blood pressure closely if you decide to give licorice root or other licorice products a try.
Art
Any experience with Thiamine [B1] holiday?
Why some of very active members are absent for quite some time
