I am in the process of adjusting my dose. Brought on by worse symptoms developing. I could not rise from a heavy cushioned recliner. That all changed after week into the adjustments . Adjustment effort continues. Now if I only don’t mess up.
Reference:
“ Why Are Forum Members Who are Using HDT/B-1 Starting To Have Symptom Increases After 6 ~ 18 Months Of Being Stable With B-1/HDT ?
chartist
chartist
7 months ago•48 Replies
I've been answering questions about this more and more on this forum as members start to exceed 6 months of HDT use. I decided to make a post about this problem so members can search/reference this post as needed.
According to Dr. Costantini, his theory is that thiamine/B-1 at higher dosing is reducing neuroinflammation, neurodegeneration, free radicals and oxidative stress which are feeding off of each other in a vicious cycle. Thiamine is possibly reducing or breaking this vicious cycle that is damaging dopamine producing neurons and other cells in the brain or possibly reactivating neurons that have become inactive. This combination of events is allowing increased cellular repair and the increased cellular repair, over time, can possibly reduce the bodies and brains demand for B-1 resulting in slightly more B-1 than is currently needed. More B-1 than is needed, results in increased PD symptoms. It takes months to see this type of cellular repair and based on the increased incidence of reports of a worsening of symptoms after months of HDT use, this is a real phenomenon.
Dr. Costantini's solutions to this problem is to stop B-1 for a week or so and then restart HDT at the same dose, but take a day off from B-1 per week or possibly two days off per week in order to create a fairly small dose reduction that should resolve the symptom increase. His other solution was to take a mini vacation from HDT every 3 months for three days to a week or more depending on how you respond. After the initial stop of B-1, the increased symptoms should decline fairly quickly such as forum member, 38yroldmale just reported after stopping B-1 for two days, his increased symptoms declined.This fits with the whole idea that there is now slightly more B-1 available than the body needs and this is creating a mild B-1 overdose condition. The fact that 38yroldmale responded in just two days of stopping B-1 suggests that the current dose is close, but a bit on the high side.
If Dr. Costantini's theory is correct about cellular repair, this scenario could potentially happen again some where down the road if the cellular repair process continues indefinitely.
Your continued reports about this are helpful for other members who are seeing this increase in symptoms after months of being fairly stable on HDT/B-1 and thinking that B-1 is failing them and the disease is again continuing to progress, when all that is likely needed is a small dose adjustment or mini B-1 vacation, base
Hi Roy, this happened to my husband also and he has slowly reduced to just 2x 500mg Solgar thiamine hcl tabs per day. He is perfectly stable and doing really well.
Thank you for the update! I will copy and paste it to the original thread on this subject so that more people can read how you and your husband worked it out! What dose was he taking prior to the downward adjustment?
He was originally started by Dr Costantini (July 2018) on 2 x 1ml vials per week. We have reduced his dose several times and then he swapped to tablets a few months ago. Very easy now for him to take each day without involving me. He just takes both at the same time and with Essential Nutrients which also has a fairly large dose of B1 in it. 🙂
I was stable on HDT for about 18 months @ 2 injections per week, one week off per month. Then the injections started aggravating symptoms. I dropped down to 1 shot per week. When the COVID shut down hit this spring I switched to oral 1g per day. That turned out to be too high a dose. I’m now stable at just 500mg per day. Thanks- JG
My husband now takes 1x500mg B1 in the morning Mon-Fri, on those days he also takes a Jarrows psp B6, methylcobalamin, folate chew tablet at dinner. We noticed that when he felt the B1 was too high he would get flaky/dry skin and would seem jittery.
In my experience, in the long run, thiamine must be accompanied with some supplementation of multivitamins or complex b with minerals, magnesium, calcium and all the others taken occasionally at normal doses. Also a good balanced diet with carbohydrates, proteins and glucose vegetables and fresh fruit. This is because the b1 activates many processes and it is easy to get to some deficiency. Recently one thing that helped me a lot was a mixture of vitamins and minerals created to resolve acetone in children which is called “biochetasi” (selling in Italy only ) based on potassium ,glucose and vitamins b6, b2, B1 and a few other things. it was also very effective for my acidity. But each has its own personal shortcomings of course. (note that b6 may interfere with levodopa).
Some good nutritionist or expert on the subject will be able to explain this concepts more scientifically.
Io avevo un problema di forte acidità e molta stanchezza dopo mangiato soprattutto nei cambi di stagione e mi sono ricordato di questo prodotto contro l'acetone e la chetosi , l'ho provato e.... bang! effetto immediato ... fine dei due sintomi in un giorno e prolungamento del tempo di "ON" su Ldopa . Fantastico. Forse venivo da una dieta sregolata , molto ricca di grassi dopo le vacanze o forse no. Questo è prodotto molto sicuro a base di vitamine B1 B2 B6 , potassio , sodio citrato acido citrico e cosi via.
Tutte cose apparentemente molto banali.
Forse ripulisce il sangue dai chetoni prodotti dal fegato per una carenza di glucosio dovuta dall'uso della thiamina , non so veramente sono solo supposizioni, ma ha funzionato bene.
Contiene Vitamina B6 può interagire con la Ldopa se preso in concomitanza.
I want to try it, I see that it contains many vitamins that I am taking as supplements and that I could stop. I withdrew the blood tests just today and I find myself with an increase in red blood cells, has this ever happened to you? My doctor attributes this to vit. B12.
I have been taking 4 gram of B1 for 12 months. About 3 weeks ago I decided to take a multivitamin as well. After about 3 days I felt much better I also realised that this supplement had a high dose of B1 in it and reduced my tablets to adjust the dose.
When I did this I did not feel as strong so as an experiment I reinstated my B1 tablets and felt better again.
I now take 5.5 gram of B1 a day.
I am now in a position where I occasionally decide not to take the multi vitamin.
Overall I am better. My tongue works better, I chew my food more easily, I sit up when I am eating, I am not so afraid that the food will fall off my fork, I am cooking simple meals again, I don’t dribble when lying down , I can say multisyllabic words, My swallow seems better, I am eating rice again, My balance is better.
Downside is that I have increased numbness in my left leg. This sometimes also happens to my left arm and left side of the face. Sometimes it is a very strong feeling and other times I am hardly aware of it. It is a good indicator of how nervous I feel. I have also started having short sharp pains in my head - I don’t know what all that is about.
Please keep us informed on how you do at that dose. There have only been a couple of members who have stayed at 4,000 mg/day. Most have eventually settled on a lower dose than 4 grams/day. So you are the first at this dose. One member that I am aware of has experimented at higher than 4 grams, but eventually came back down.
Yes, I would consider MSA a much more severe disease than PD. The initial symptoms can be very similar to PD, but the progression rate is much quicker. It is a bad disease, no doubt.
I have been taking B1 for about 2 years now and i now take it only on weekdays so only 5 days a week. I have done this for about 6-7 months and it has stopped the ' build up' i would experience when taking everyday. I'm probably in best physical shape than hv been for many years.
My husband recently stated trying to take C/L then Switched to madopar and he has become extremely anxious so after trying various levels of these I decided to stop his other supplements including thiamine for a while to see if it was an interaction with any of them, and because I know if I take him to the GP they will blame the supplements. Well after a short time his physical condition deteriorated markedly, stiffness, constipation and feeling unwell so now he is back on them all and some symptoms like constipation resolved very quickly. He is still very anxious though. He is taking 2x 500mg thiamine. I’m not sure if it is the right amount.
No he just felt much worse in all respects. I am thinking now the anxiety might be caused by a physical problem rather than chemical as when he is starting to worry about something he starts to double down on his incessant online bridge playing and his shoulders are so stiff ( the reason he tried the levodopa in the first place.) his scapula bones have started protruding (winged scapula). I think this stiffness and malformation might be affecting his chest movement and breathing. And might be why his hands are getting so much worse. He also has pronounced curve in the lower back with hollow in the small of his back. His upper back and shoulders, neck and head are very upright and extremely straight. Not a normal PD forward leaning position. His arms just hang and I think some of the loss of feeling and movement might be nerves and blood flow being affected.
Some of those symptoms don't even sound like PD, but it can vary considerably from person to person. Anxiety is a known effect of PD, but madopar can also cause anxiety as well as the compulsive behavior that you mentioned.
What has his neurologist mentioned so far regarding these symptoms?
On an unrelated note, Albert is ever closer to defining proper dosing for his protocol, so you might want to keep an eye on his thread as forum members begin testing different dose levels.
We have not seen the specialist for 2 years. He never mentioned these but they have got worse recently. The only Pd nurse has just resigned. The gp doesn’t know much about Pd. I’m struggling to figure out what to do next. Maybe the gp can refer me back to the specialist. They did say 2 years ago he would be recalled when it was his turn. I don’t know of any private ones he can see but maybe we should go back to the gp.
I had trouble finding the "complete list" of side effects of madopar, but what I could find didn't list anything like the spinal issues you described and it seems doubtful that his supplements could cause such a reaction. Can your GP refer you to an MDS, because that seems like what he really needs at this point and it doesn't sound like your GP is going to know much about PD symptoms and complications.
The back curve he has had for years but it is getting worse. He used to have a big belly which I thought caused it but he lost a lot of weight early on on the new diet but it didn’t stop it. It’s like some muscles are too tight and others opposing aren’t at all.
Actually just recently he has quite suddenly lost a lot of weight again. About another 6 kg. Not sure why. He still seems to eat well and the same food. Might have been when I stopped the supplements for the 3 weeks when he started the madopar.
Also one other thing is that he has been taking the restore gold 4x4 capsules for ages, but since being on the levodopa drugs he has stopped the night ones as it has tyrosine in it and he didn’t want to take it with the Kinson then the madopar when he swapped. Then he had the 3 week break. Maybe it had been working better at the full dose and making a difference to him. So he has started taking it at night again from last night since he dropped the night madopar now.
Hi LAJ, I would call the NZ Brain Research Institute and try and get an appointment with one the neurologists there, they are in Christchurch and it was where my husband went when he ‘used to ‘ go to his neurologist. If a referral is needed they may be able to pencil you in while they wait for the referral to be received. Some his behaviour sounds compulsive, which I believe can come from any med that provides or affects L dopa. My husband was on an agonist for 2 years and got compulsive during the last 6 months, hence he safely stopped taking it. Also my husband has had success with anxiety, sleep and pain using a full spectrum hemp oil (yes from nz, yes legal). Also there will be a facility built for neurological disorders in the very near future in Christchurch which will be of great benefit, here’s the link, I think it looks promising, especially when you read about the Director who has PD and does a lot more than just taking pills.
He has always been very compulsive even not on drugs. When they put him on fluoxetine and mirtazapine a few years ago he would not stop eating, started gambling secretly, and once on holiday I was in fear for our lives as he wouldn’t slow down driving and wanted to overtake every car he could see ahead.
hi roy well i tried that b.1 for a few years it really does nothing for me the only thing that did me any good was getting up in the morning and walk some exercise as well.7 days a week.i did have an opp on my back very painful i went in for it about 20 days ago was one and and a half days in hospital.the parkinsons dont really bother me im getting stronger now i get up early still talk the dog with me every day i was on a lot of pain killers with my back 1 palexia tablet 200mg 3 times a day.and i was still in a lot of pain..0ne madopar.one siftrol 3mg..i go back for a check up in 8 weeks so i try and stop some taking a lot of the pills i was using i lost a bit of weight but im eating good now..so get up early and walk.regards john.
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