Does anyone know if Vitamin B1 stops the progression in Parkinson’s if taken with Mucuna or does it stop progression when taken only in combination with C/L???
My husband is not on C/L. He started Mucuna, a year ago, and B1 (fluctuates between 500mg - 1000 mg daily).
He doesn’t see any real benefit...hand tremors have gotten much worse, speech is now slurred, now having trouble sleeping and most recently has bad anxiety.
If high-dose thiamine is causing a worsening of symptoms he should:
highdosethiamine.org/hdt-th...
" First of all we learned that if the initial dose of thiamine is too high for the patient, they will experience a worsening of the symptoms after a few days characterized by an initial improvement.
In this case we invite the patient to halt the treatment with high dose thiamine for a week or so, and when the worsening regresses we restart the therapy with lower doses, often half the original dose."
I see no reason why Mucuna would not be as good as C/L with regard to complementing high-dose thiamine.
Park_Bear,Thank you for that very informative link. That’s what I was hoping to hear you say...that is, that there should be no reason why Mucuna, also being a natural dopamine, would not be as good as C/L in complimenting high-dose thiamine. Unless, the high-dose thiamine’s function is to target the carbidopa instead of the L-dopa. I wish there were more patients reporting if they’ve had any experiences with HDT halting tremors or halting progression when taken with natural dopamine from Mucuna pruriens.
It’s encouraging to read in the link (under non-motor symptoms) that even when HDT is the only therapy the patient takes non-motor symptoms, which are less intense, may be relieved completely by HDT.
From your question in your 1st sentence, it sounds to me like you may have the expectation that B1 WILL stop the progression -- depending on whether he takes it with Mucuna or C/L. While many on this forum experience substantial relief from B-1, were I you, I would not go into it with the expectation that it stops the progression (in all people.) Perhaps the reason your husband has not felt any benefit is unrelated to the dose. I'm 1 of those who has not experienced any relief and I've tried every dose possible.
I still take it though because it's cheap, safe, and it probably is helpful.
Yes, MBAnderson...that's the reason for taking it. We heard it would stop progression but, after reading more on the subject, I wasn't sure if it works as well with MUCUNA as it does with C/L . I'm sorry you haven't experienced any relief even after experimenting with all doses. My husband started with 500mg a day, but when he went up to 1000mg he felt it was disrupting his bowls and decided to stick with 500mg a day instead. So, like you, we are not sure it's helping, but will continue to take it just because it might probably be helpful. Thank you for sharing your experience.
I'm sorry for this silly question (I'm not an English speaker). What does C/L stand for, please?
Regarding B1, it does not work for everyone, no supplement or drug does. Without more information, it is hard to say if your husband should continue B1. There is no way of knowing if his dose is too low and therefore no response or if he is just a non responder to B1 unless he is willing to experiment at higher dosing up to 4 grams. The effective dose reported on this forum is 25 mg/day up to 4,000+ mg/day. He is only taking 500 to 1,000 mg /day so there is plenty of room to test higher if he chooses to. How much does he weigh? If he is not planning to test at higher dosing, it may be better to just stop taking something that is not showing him any benefit at all.
As far as does B1 stop progression, that was based on Dr. Costantini's clinical experience with his HDT patients at the time that he made that statement. At that point in time, he only had roughly 4 to 5 years of experience with B1 in his patients, so in his experience at that point, he did not see disease progression in that 4 to 5 years of use in his patients. We no longer have Dr. Costantini to give updates on his patient's progression or lack of progression. His office patients are the longest ones on HDT.
Beyond that, we simply do not know for certain and even a clinical trial will not confirm that point, but based on some reports on this forum, it may or it may not. Responders to B1 do not seem to want to stop B1 whether it stops disease progression or not. They are simply happy with the benefits they have gotten from it and are willing to leave it at that and if it does stop or slow disease progression too, that's just icing on the cake.
Art
Did Dr C talk about "non responders"? Because the webpage PB linked to, which i appreciate is both translated and a summary, doesnt seem to. He seems to suggest that the disease didnt seem to progress in any of the 2,500+ patients.
He did not, but Dr. Colangelli, an associate doctor did. As I stated above, Dr. Costantini did not see progression in his patients in the period while he was still treating them, about 4 to 5 years. The great majority of his patients were using IM injections which was Dr. Costantini's preferred method over oral dosing.
Art
Hi ChrisWF, great point! I don’t think it said anything about non responders, but it was encouraging to read (under the non-motor symptoms topic, that even when HDT is the only therapy the patient takes non-motor symptoms may be relieved completely by HDT. So, since the non-motor symptoms are less intense than motor-symptoms, like hand tremors, maybe HDL is working after all even for those who think they are not seeing any relief or benefits from it. Thanks for your insightful thinking.
Hi Art, my husband weight 152 lbs. He's not sure if HDT helps him or not, but our integrated family doctor wants him to continue taking it, so we will follow her advice just in case it helps. We are kind of new to this wicked condition. My husband was diagnosed 1.5 years ago and the more I learn, the more I realize how little I know. I'm so thankful for all the knowledge I get from all the well informed people, like yourself, in this forum, who have first hand knowledge. From the very beginning, along with HDT and MUCUNA, we have followed the ""Recipe for Recovery" by Howard Shifke, who along with 7 other patients has completely reversed his disease and recovered without any drugs or supplements. So far, it has helped my husband quite well with energy, mental clarity and overall wellbeing, but his annoying hands/arm tremors seem to slowly get worse disrupting his speech and making things worse. It is so frustrating and confusing when you are left on your own to decide what to do, especially because neurologists have no idea what really causes this or how to successfully treat it. We are now adding a new protocol. We started taking Restore Gold a week ago...we were encouraged to do so by some who have experience positive results with it.It takes 2 to 3 months to notice results. We're praying it will help. If it helps him, I will post it here.
Four months now and a good time to receive your Restore Gold report.
Hello Roy,
Unfortunately after 3.5 months we saw no benefit with Restore Gold, so we stopped using it.
We recently decided to take a rest and temporarily stop almost all of the many supplements (too many) and this time felt the courage to jump from
500 mg of the B1 HCL to 4 grams daily and instead slowly come down. It’s difficult to tell if it helps.
At the same time we made the jump to high doses of B1, we also purchased the
“Duo Coronet” hat, from Australia, with Red LED and near-infrared lights, which pulsates at 40 hertz. He uses it 2 times a day...24 minutes each time.
Hoping and praying one or the other will produce some relief from tremors.
B1Four months TRACKING improvement
FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
Roy, Did the push test video already. Will do the others. Everyday is different. It all depends how well he sleeps the night before and his stress level. He wakes up frequently at night and sometimes struggles to go back to sleep.
For what little it's worth, I started to see marked improvement by lowering the B 1 dose at dinner and combining Mg ++ in the morning after some rehearsal. Now I want to try taking B 1 for lunch. I also take Selegiline and do exercises. Never give up.
Hi Basilico, that’s interesting. What kind of improvement have you experienced. Did you see any improvement with tremors. It seems like nothing stops those tremors for us and for 5 months we tried Rasageline, which If I’m not mistaken is generic for Selegiline.
Yes, they are similar, but not the same, there is a vast literature on the subject, I trust my neurologist who prefers selegiline 5mg.
ncbi.nlm.nih.gov/pmc/articl...
On magnesium it is one thing I do not understand, it works for me for the moment with 2,250g of magnesium pidolate before breakfast with segeline, but I try to use 1,125g for safety, it is as if it amplifies the segeline: in the morning it makes the tremor less , then resumes in the evening as usual.
pubmed.ncbi.nlm.nih.gov/305...
I read on the blog about transient phenomena, effects that vanish over time as the disease progresses.
Vitamin B1 does nothing on tremor, it appears to reduce other effects.
We don’t know, it’s never been tested in a randomised
controlled clinical trial. Why doesn’t he try C/L?
Hi Cagey84, I guess because we are worried and want to avoid the adverse side effects of the medications, especially after witnessing some me people we see, who haven't done well on them and whose doctors push only drugs. It is my understanding that they might help to a certain degree...but eventually they seem to give in and later some other serious reactions may happen. I tend to have more faith in Natural Medicine to heal and increase the dopamine level in the brain naturally or by increasing the precursors to making your own dopamine.
Hi MCC950 - OK, I understand, but please bear in mind that the levodopa in Mucuna is exactly the same as that in C/L, so if side effects happen in the future, they will do so whichever version of levodopa you take. The other advantage of C/L in my view is that you can control exactly how much levodopa you take. Finally, I would argue that natural doesn't automatically mean safe, let alone effective.
As Marc points out there is ample evidence that it does NOT stop progression. Royprop recently published that his UPDRS score had deteriorated by 10 points over 2 years
Interesting because mine is different after 5 years.
It's different? So is Roy's.
Okay you are not interested in my test, I understand Cris...
Thank you. I'm not interested in your post too, go ahead but I suggest you to go to bed, it's late at your place instead of trolling me.
Maybe actually post something about your test. "Mine is different" doesnt tell us much.
I have already done so but you don't consider it valid, since you don't consider dozens of success stories that have been shown to you recently on this forum , surely you have other interests. As II can deduce from your first post. You were also a bit rude to me with personal offenses that you later deleted so I don't understand what you want from me.
I want you to stop trolling my comments (like yesterday). But you are still pretty keen on it, and we don't always get what we want, so c'est la vie.
As for your UDPRS, why don't you share your 5 year progress for the benefit of others (not me)? People aren't going to sort through your posts to find the information.
For the record, i believe people get therapeutic benefit from HDT. I dont believe it stops progression.
at the moment you are trolling me.
Now you also pretend to speak in the interest of all others when you have shown that you have no consideration in the people in this forum with different opinions often denigrating or insulting them as with me.
I look more at the actions than at the speeches of a person so you say you think b1 is beneficial. have you tried b1? with what results? I have already written my story tell us yours.
I havent insulted anyone (maybe Bepo. I'd argue she had it coming). You are VERY sensitive to even a hint of objective discussion about B1 (Even WTP has called you out on this before) and you frequntly state or imply that i am a PD imposter who is only here to conspire on behalf of a clinical trial i posted one thread about 5 months ago (i also remember when you said you'd drop that stupid conspiracy theory if i posted more threads. I've posted 4 threads since then and you still wont let it go. So much for your integrity). Frankly if you feel denigrated or insulted, you should look in the mirror.
I've posted about my B1 use before. Perhaps you can go searching for that, since that what you expect of others.
Sorry to hear that...What is UPDRS score?
Unified Parkinson Disease Rating Scale
sure you've never insulted anyone?
I've read all the replies and am deeply grateful for all your thoughtful comments. I'm so sorry for my delayed response. It's been a crazy couple weeks. My husband had a sudden case of anxiety that seemed to come out of nowhere. To top it off, a day later we got results from some blood work that showed extremely high Iodine levels of 3999.4 (average being 26.0-705.0 ug/L). That caused him a full blown panic attack. He had been taking iodine because it was on the low side of normal. His high sensitivity CRP (C-Reactive Protein) was also on the high side...so, I guess his concern for these results added to his anxiety. Naturally, he’s been having trouble sleeping, but it's much better now that he's taking GABA for anxiety, PS150 (phosphatidylSerine 150) for his overactive adrenal glands (cortisol 18.8)... also melatonin to help him sleep.
Four months TRACKING improvementFIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.
Thiamine B1 and the placebo effect
Question about levodopa/carbidopa
+* Day 51 of taking TTFD: (B1) :-)
Mucuna pruriens extracts
Azilect – side effects
