High dose Thiamine update : I am... - Parkinson's Movement

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High dose Thiamine update

Kia17
Kia17

I am convinced that overtime I’d need much less Thiamine compared to the initial dose when started taking it. My guess is that Genes related to methylation upregulated and switched on therefore they do the job with less Thiamine.

I was taking 4grs daily for months then 3grs for another 6 months or so then 3grs 6 days a week and now I am going to reduce the dosage to 2grs a day. I noticed when I take 3grs daily I feel over-charged so I did an experiment.As its been proved that Niacin B3 is methyl burner.On some days that I feel over-charged by Thiamine, I take 50mg Niacin and whithin 30 minutes or so It brings my mental and physical to a very calm state and naturalises the effects of extra Thiamine (over-methylation).

50 Replies
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That is interesting. I've been on 100mg injections 2x per week and recently switched to 1x per week injections with oral 500mg per day in between. I'll start looking at niacin - thiamine interactions. Thanks for the post - JG

GioCas
GioCas in reply to reedboat2

reedboat, IMO if you take a break , one week every three is better than to reduce Injection. I do.

reedboat2
reedboat2 in reply to GioCas

Thanks Gio, I'll try that

Ivabla
Ivabla in reply to reedboat2

Hiii people,

I am new here and I don't know much about thiamine protocol. My mother have PD for almost 6yrs now. I am from Croatia and the neurologist in this country are not informed about these treatment. Can you tell me your experience how did you reach dr. Constantin? I was wondering to put my mother on the protocol but I don't know anyone in Croatia that they know about thiamine. Every information is helpful. Thnx

chartist
chartist in reply to Ivabla

Ivabla,

Here is a link to a post that will answer many if not all of your questions about HDT/Vitamin B-1/ Thiamine HCI/HCL including results that forum members have reported from using HDT/ B-1:

healthunlocked.com/parkinso...

Good luck!

Art

Ivabla
Ivabla in reply to chartist

Thank you!!

Kia,

As always, very useful information for the forum members who are testing or using HDT/B-1 to know since they may encounter similar effects the longer they are on B-1!

Thank you for sharing!

I have heard others discuss how they see some symptoms start to emerge again after being on B-1 for months or years and what you are describing fits right in with that and that Dr. Costantini said the correct dose will only lead to symptom improvements and that there is the possibility that less thiamine may be needed as time goes by and why HDT vacations are even possible.

I have a thought on why that may be, but it is just pure speculation on my part. It is known that thiamine deficiency in the brain causes neuroinflammation and bringing the thiamine level in the brain significantly upward can reduce this neuroinflammation significantly. Neuroinflammation can be a brain destroyer. Neuroinflammation will damage dopamine producing neurons as well as other cells and neurons in the brain. Making the brain replete with enough thiamine will reduce this neuroinflammation and perhaps allow some needed repair work to be initiated by the brain under less inflammatory conditions and less oxidative stress and in turn lower the demand for thiamine as the neuroinflammation slowly declines over months or years of a steady diet of more than enough thiamine. This decline in neuroinflammation could also partially explain why Dr. Costantini never saw disease progression once his patients started on HDT. Lowering the neuroinflammation enough may stop or significantly slow the neuron damage associated with PD and also retard or halt disease progression.

I know this is a very simple concept, but maybe it is just that plain and simple, stop or significantly reduce the very damaging neuroinflammation and disease progression may follow with no more damaging neuroinflammation to drive it forward! This could also possibly explain why Dr Costantini is able to treat other neurodegenerative diseases with HDT, because neuroinflammation is a major driving factor of the disease process and limiting or stopping the neuroinflammation can be at least one major key factor!

Art

Kia17
Kia17 in reply to chartist

Hi Art

Glad to see you are back.

Your reasoning makes sense and explains why we may gradually need less Thiamine overtime. I guess in my case having Low carbohydrate diet and intermittent fasting has also helped me to reduce the inflammation and adjusted insulin response to a degree that with less Thiamine get the same results. I think if we follow a healthly lifestyle ,whithin years we may only need a B complex to do the job. Like many of us in this forum,I have done many trial and error experiments (but with caution) to find out what works for me. Genetic testing has helped me to see things clearly about my body and its needs.

Kia

chartist
chartist in reply to Kia17

Kia,

Lowering your total inflammatory level system wide as well as excess oxidative stress and damage from multiple forms of radicals makes sense to me. Adding in a supplement like thiamine that seems to more specifically target neuroinflammation in the brain seems like a good idea when you already know that neuroinflammation is a major player in the Parkinson's disease process. Trying to stop the damage before it even occurs as thiamine is likely doing, also makes plenty of sense. The good safety profile of thiamine just adds to the possibilities.

Inflammation and oxidative stress play a critical role and are needed for proper body function, but chronic excess of both is damaging wherever it exists in the body and in the case of PD and other neurodegenerative diseases, that would be the brain.

Dr. Costantini well understood that thiamine deficiency is highly neuroinflammatory and neurodegenerative and he figured out that by introducing HDT/B-1 at such high dosing was one fairly effective way to reverse or slow the inflammation in the brain by allowing enough thiamine to reach the brain to resolve the thiamine deficit and consequently the excess inflammation and oxidation from that deficit. What is unknown is how much repair the brain is able to do on its own once the chronic inflammation and oxidatative stress are brought down low enough, but your personal experience suggests that those repairs may be possible and hence your declining need for thiamine over many months of being on HDT. Another point to consider is that this will be your second time lowering your dose, again suggesting that the repair process can be on going and the multiple other steps you are taking are likely additive!

You are very proactive, Kia and some of the steps you have taken over the past two years or more may be operating synergistically with the HDT/B-1 to maintain yourself in such good shape!

Art

Kia17
Kia17 in reply to chartist

Thank you Art

My husband had to stop all vitamins/minerals a week before his stenting. It's been almost one month since the surgery. Although the near fatal complications, the stress and the shock from this surgery set him way back, I can still see how (well) he was doing prior to his surgery and presently (not so well). He is getting back to the routine and is improving every day, however, I absolutely can tell the B1 magic touch is missing!! Will start it again soon. We just don't know if it should be his original dose of 100mg X 2 weekly or lower (prior to his surgery dose) as he has lost more weight since his original dose, suggested by Dr. C. and based on his then weight.

Bravo Kia, you got the bull by the horns! :)

Kia17
Kia17 in reply to Despe

Hi Despe

Thank you and hope that your husband medical situation get back to normal soon.

Despe
Despe in reply to Kia17

Thank you!

Does too much thiamine cause a general feeling of being unwell and fluey? My husband has been taking between 1.5 - 3 g of b1 for a year now and I can’t work out the correct level. We have been going back and forth over time. He was feeling very well from January - May (winter) then suddenly this fluey nauseous sick feeling first thing in the morning started. I can’t get to the bottom of it. It isn’t the sinemet as he feels bad before taking it.

He usually feels the best as the evening approaches. He says it isn’t anxiety or depression. He takes sinemet first thing, and sertraline and mirtazapine before bed plus other supplements listed on my profile.

Does anyone know what causes the fluey feeling? Almost every day he tells me he thinks he really has the flu today but he doesn’t appear to have other flu symptoms and this has been going on for months.

chartist
chartist in reply to LAJ12345

This can be a side effect of mirtazapine :

google.com/search?rlz=1C1CH...

Art

LAJ12345
LAJ12345 in reply to chartist

Yeah maybe that’s it. Also sertraline. I was just checking it wasn’t the b1. The difficulty is the public health psychiatrist prescribed them when he was suicidal but he isn’t available to consult with as he is only acute care. The GP won’t adjust them as the psychiatrist prescribed them.

Hubby will not agree to go back to psychiatrist as he hates “wasting money” . And psychiatrists refuse to accept any treatment other than drugs so will likely tell him to double them and stop taking supplements. And then we are back to square one with him sleeping all day and behaving like a 90 year old dementia patient.

I think he is having seratonin fluctuations from the drugs and winter indoor lights and short daylight hours as he was so well until May. Not sure what to do.

chartist
chartist in reply to LAJ12345

How much vitamin d is he taking to try and compensate for cabin fever?

LAJ12345
LAJ12345 in reply to chartist

He taking the Hardy’s den which has 1000 units 3x per day.

I had his vitamin d tested and he is slightly above the top end of the normal scale.

*** it was just below top end not just above.

chartist
chartist in reply to LAJ12345

The 25 OH (d) reference range is 30~100 ng/ml. I didn't think that a person could get close to the top of this range (100 ng/ml) on just 3,000 iu / day of vitamin D-3?

Art

LAJ12345
LAJ12345 in reply to chartist

Well before taking the Hardy’s when he was on an individual 1000 unit one once per day with k2 I had his D measured last October and it was 355 nmol/l which worried me a bit as it was so high so I stopped giving him the D over summer (in NZ nov- jan) He’s been on Hardy’s from February and feeling very good until May. It had dropped to 142 in June (range is 50-150nmol/L) when I had it measured again as he wasn’t feeling good, even though Hardys supposedly has more in it than the individual supplement I was giving him previously. Possibly it dropped before that over summer before the Hardy’s but I didn’t test it then. As it had dropped so much from oct 18 to jun19 I have been giving him an extra 1000 of the old tablets every few days as well since it is winter just in case it goes any lower.

So to summarise he felt bad when it was 355, felt bad when it was 142, but felt good over summer in between those 2 measurements on Hardy’s but I didn’t measure it then.

Is it possible he needs more than the top of the range to feel good? He definitely wasn’t feeling good at 355 though but that could have been unrelated. He was not on the antidepressants back then having been off mirtazapine for a few months at that point.

Sorry, I have just realised I have hijacked a thread on a different topic.

chartist
chartist in reply to LAJ12345

It is pretty amazing how so little vitamin D can move his 25 OH (d) serum level so drastically! Very unusual. Even at 142 nmol/l, he is still well enough up in the reference range where he should not be having a problem with not enough vitamin D.

As far as possibly needing more, that would probably only be the case if he were having some issue with his vitamin d receptors and that would require more testing to determine if that were the case.

Since you are dealing with a known common side effect of Mirtazapine, that might be a good place to start the questions with his doctor to see if he can adjust the single dose or split it into two doses to try and balance things out to avoid those flu like symptoms/feelings.

Art

chartist
chartist in reply to LAJ12345

ncbi.nlm.nih.gov/pmc/articl...

LAJ12345
LAJ12345 in reply to chartist

Yes I wonder if the fluey feeling can just be due to seratonin malfunctions due to SAD

Sandokai
Sandokai in reply to LAJ12345

Sorry to hear about your husbands fluey feelings. What is his diet like and is he getting outdoors and exercising daily in the light?

LAJ12345
LAJ12345 in reply to Sandokai

His diet is very strictly monitored, no sugar, gluten, processed or deep fried food, lots of Veges, nuts, seeds, green. He walks an hour every day as soon as I can get him moving in the mornings which can be as late as 11am but gets plenty of light. I have a light box I have on a timer in the bedroom coming on at 7am.

I’m not sure what else to do.

Sandokai
Sandokai in reply to LAJ12345

You're doing everything right so it's probably one of the medications or the supplements. A systematic process of reduction and/or elimination to identify what if anything is having an impact is probably the way to go. I'm sure you'll get to the bottom of it soon enough.

LAJ12345
LAJ12345 in reply to chartist

Do you think having a small amount of mirtazapine rather than a large amount he could be having withdrawals every morning? He has been on 1/8 of a tablet or 3.75 mg since February which is enough to help him sleep, but not be dozy in the morning. On 15 and 30 mg that he was on a few years ago he would not get up or talk or do anything.

jeffreyn
jeffreyn in reply to LAJ12345

You said earlier: "He was feeling very well from January - May (winter) then suddenly this fluey nauseous sick feeling first thing in the morning started."

and just now: "He has been on 1/8 of a tablet or 3.75 mg since February ..."

So the answer is "no" (i.e. dates don't match).

LAJ12345
LAJ12345 in reply to jeffreyn

Thanks, you’re right.

Despe
Despe in reply to LAJ12345

LAJ

Perhaps, he should gradually stop it. Anticholinergics are not the best meds for Parkinson's. Husband takes Citicoline for brain health plus some other nootropics. Before his surgery, he was taking 5,000 IU Vitamin D, but test results just a few days before surgery indicated that he is D3 insufficient (31.4 ng/ml) and Dr. Mischley prescribed 10,000 IU/day for three months. He seems to be doing better and better every day with this dose. Comments: "Low levels in PD are associated with muscle weakness, more frequent falls, greater risk of depression, and constipation." She wants him to target blood concentrations between 60-80 ng/ml.

I know not two PwP are alike, but general rules do make sense.

LAJ12345
LAJ12345 in reply to Despe

Hi Despe,

Gradually stop which? Mirtazapine or vitamin D? Thanks

Despe
Despe in reply to LAJ12345

Mirtazapine. I have also thought about antidepressants, but the more I read about their side effects, the more I have second thoughts. He should never stop Vitamin D!

I do understand your frustrations, I am in your shoes.

LAJ12345
LAJ12345 in reply to Despe

I would love to take him off it but he was on it previously and weaned himself off over months, but months after being off it he had a major relapse into anxiety and depression and was dangerously suicidal and ended up at the public mental health unit so I am not keen for that to happen again. I blame mirtazapine for many of his symptoms as when he came off it initially he lost most symptoms until the anxiety hit. I fear it has permanently damaged his brain and from what I read on blogs many people find it impossible to get off it totally.

chartist
chartist in reply to LAJ12345

If you're interested in a natural antidepressant option this one may be doable :

ncbi.nlm.nih.gov/pubmed/313...

This appears to be a high dose synbiotic using common bacterial strains at high dose (5 grams /day) along with 15 grams of prebiotic per day made from three common prebiotics as follows:

(a) 5 g fructo-oligosaccharides

(FOS)

(b) 5 g galacto-oligosaccharides (GOS)

(c) 5 g of inulin per three 5 g sachets.

Art

LAJ12345
LAJ12345 in reply to chartist

He has been on this probiotic on and off for ages but I stopped it when he started feeling bad in case it was making him worse.

health2000.co.nz/shop/shop-...

I’m not sure how different these strains are to the ones in the study. We eat lots of Veges like leeks onions garlic, legumes, bananas etc do you think there is enough fos, gos and insulin in them or is a supplement needed? He takes so many he is starting to protest!

This study is interesting. Multivitamins decrease bifido bacteria in adhd kids.

nature.com/articles/s41598-...

chartist
chartist in reply to LAJ12345

I think the combination of the 3 prebiotics was an important factor because they are the ones that can cause a rapid increase in butyrate production, hydrogen sulfide (H2S) and an increase in t-regulatory cells (tregs) which all helps to quell excess inflammation in different areas of the body starting with the gut. They can also interact with the probiotics in a good way.

Art

LAJ12345
LAJ12345 in reply to chartist

Ok. I can see fos and inulin on vitacost but not gos by itself. It has xos in it. Would that matter?

Do you know if you can buy the exact strains of bacteria and from where or would it not matter?

He also takes Hardy’s greens and probiotics which have some of the same bacteria but they don’t say what strains they are

hardynutritionals.com/produ...

Did you look at that article on multivitamins decreasing bifido bacteria? They reported it as a positive thing which is odd as you would have thought they would be good for adhd kids too unless it makes them overstimulated? Anyway if we are all taking multinutrients does this mean we are killing our bifidobacteria? Certainly my husband’s ones were non existent when he tested them a year ago, and collinsella were high just as the article predicted. The naturopath treated that as a bad thing so I just sent her that article which she found very interesting.

chartist
chartist in reply to LAJ12345

This thread has gone way astray!

The link that you posted shows multiple prebiotics in their proprietary blend. I know that apple pectin, apple fiber, spirulina, , the grasses and the fiber content of alfalfa can probably be considered a prebiotic. I would have to read more to figure out what else on the list would have prebiotic qualities. An interesting list of supplements in their p-blend, unfortunately you have no idea of the individual content of each ingredient and whether that content is enough to actually make a significant difference in effect.

I'm ending my input to this thread because it is too far off topic.

Art

LAJ12345
LAJ12345 in reply to chartist

Yes. You’re right. Sorry.

Unless b1 is one of the vitamins that kills bifidobacterium?

Despe
Despe in reply to LAJ12345

LAJ,

Dr. Mischley is not in favor of probiotics but she told us if they will make my husband feel better he can start again. I have been taking this probiotic liquid and decided to have him (husband) start it. It has made a HUGE difference in his GI health and mood!

amazon.com/PROBIOTICS-MaryR...

Actually, I am using her multi vitamins (am and pm), too. I never felt so energetic!

chartist
chartist in reply to Despe

Nice content on that probiotic, Despe and 3 grams worth of some very common strains with none of the extra pricey patented strains, I like that! A bit pricey, but it seems like the better ones usually are. Too bad they don't say what the three grasses are and if the grasses act as prebiotics. Glad to hear it is helping your husband in a big way!

Art

Despe
Despe in reply to chartist

Yes, it is pricey, Art, but it is effective. They don't want to share their grasses' "secret," I guess. Five stars from 1,375 customers. :)

LAJ12345
LAJ12345 in reply to Despe

Thanks for that tip. We might try it. Does it have to be refrigerated. Being in NZ I worry they will be delayed in delivery and be ruined on the way.

Despe
Despe in reply to LAJ12345

No, it doesn't need to be refrigerated. Any liquid form of vitamins/supplements/minerals are more effective than pills. I am trying to get as many vitamins and minerals in the liquid form for my husband as possible.

When you reduced your thiamin B1 , do you stop taking any for 10 days before you start any new dosage? Also I’m confused about the b3. Isn’t thiamin b1?

Kia17
Kia17 in reply to Jumex2017

I haven’t completely decided yet. Niacin is different from Thiamine

In my opinion, without having your simple genetic testing including (MTHFR, MAO A , MAO B and COMT)in hand, chances in finding your exact dosage for Thiamine and other supplements are remote.You should also dedicate some time and research based on your own genome and environment, otherwise my experience won’t solve any of your PD problems and vice versa.

Hi Kia, do you take B Complex too? or any other supplements?

And medication? Thanks.

Kia17
Kia17 in reply to TL500

Hi TL500

I take methylatied B vitamins, D vitamin,and Sinemet 6.25/25 x3 times a day

TL500
TL500 in reply to Kia17

Thanks Kia for your reply.

Can you share which brand of B and D and how much you take?

Also how long been on Sinemet (100/25?) and same dose (of 1x3 per day), or increase/decrease from start? Thanks Kia.

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