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, based on what Dr. Costantini has said from his experience.
Art
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Hello Art! My husband started injections in June 2018. Following Dr. C.'s recommendation, he upped and decreased B1 several times. I can't say for sure if he improved after the first injection last year. In July of this year, he had his right carotid artery stenting procedure with almost fatal complications. He was on an approximately 2-month break following the procedure. He started again last month but at half the originally recommended dose. He remains stable, except his posture is a little worse than when he started B1 last year. He also started to clear his voice and at times he sounds like he has a cold, symptoms he didn't have last year. I wish I could tell if he is on the right dose now (50mg X 2 w) or he needs to further decrease the dose. At times we are thinking about switching to oral B1 which you can easier control than injections. We have B1 vials which expire in January 2020. Thinking about continuing with the injections and start oral B1 after vials are gone.
I can't see any reason why he can't try the oral version once he uses up his vials of thiamine. He seems to respond to B-1, but clearly finding the correct dose has been a challenge. There seems to be more adjustability with oral dosing, so maybe that will be a better course for him!
On an unrelated note, I am curious about Dr. Mischley and I was wondering if you feel her changes to his protocol have made a significant difference and if so, could you describe the differences?
Art, I can't really pinpoint what contributed to his improvements. Dr. Mischley recommended Mediterranean diet which we have been on since we got married (a century ago, hahaha ). She also added intranasal glutathione, liquid COQ10, fish oil and turmeric. Although he was taking all of these supplements before, she asked him to replace them with the liquid form as they are best absorbed by the body. There were no real changes to his protocol, just different form of vitamins/supplements (liquid vs capsules/pills). She also added LO, Hemp Max soft gels by Douglas Labs, and Melatonin.
He takes 1/2 t C/L with one MP capsule X 3 a day and most of the time his midday dose is two MP capsules with 1/2 t carbidopa. At times he doesn't even need his midday L-dopa. He was also on 1/2 t Azilect. He stopped it after talking to his MDS about his swollen ankles. MDS said that he didn't believe Azilect caused the problem, but he could stop it for a week or so to find out if Azilect was the cause of his ankles' swelling.
You don't say how much of each supplement he is taking, so it is hard to know the potential of each without that information. All of the ones you named have antiinflammatory effects and some have antioxidant effects also, two very good things when it comes to PD. Intransal Glutathione in one study did not show as impressively as might have been expected, but it did show some improvement in PD symptoms, but both doses used were not superior to placebo.
CoQ-10 would likely be additive to the IG in protecting mitochondria. Curcumin is slower acting overall, but a highly bioavailable liquid form may act quicker and be more effective at lower dosing. Cancer studies using curcumin use as much as 8 grams/ day to see effect. Curcumin acts as a good anti-inflammatory as one of its many effects and also has some antioxidant qualities.
A very high quality fish oil is a very potent antiinflammatory and can show results fairly quickly and it has the potential to lower high triglycerides if it really is very high quality. HempMax is also antiinflammatory and should start showing results fairly quickly. Melatonin can act as an antiinflammatory and a very potent antioxidant while helping to get better quality REM sleep where the body is better able to repair itself during that time. The effects of melatonin would not be very obvious as it is more of a long term type of treatment that has life extending potential.
LO, I am still reading about in fascination of its wide ranging effects in PD and other health issues, so it may be a major change for your husband that is significantly contributing to his improvements. bassofspades said it took just two weeks to show very significant effects in him and you might be the best judge of how quickly it is helping your husband.
Despe, I am very happy to hear that your husband has improved significantly as you two have been working at it for a long time!!
LO = Lithium Orotate and in the context of this thread and other recent threads on this forum is referring to very low dose LO, below 21 mg per day.
Here is some recent information about it and a very good response from a forum member who saw many significant results after two weeks of use! Studies are suggesting it may have significant value in PWP as well as AD/dementia, memory and ALS.
The combination of HempMax and Melatonin made my husband very lethargic the next day. We decided to stop HempMax and continue with Melatonin (2mg). He is more alert in the morning now.
Intranasal glutathione was administered via a syringe, 100mg x 3 day. His liposomal is by Quick Silver, sprays 5 X 3 a day. His COQ10 in the liquid form 4 tsps x 2 day. These doses were recommended by Dr. Mischley.
His Turmeric is by Integrative Therapeutics X 2 a day. His fish oil is by Metagenics 4 c X 2 day. He was taking a liquid form (recommended by Dr. M.), but I noticed before he finished it looked like it was oxidized. Metagenics was recommended by our Cleveland /functional medicine physician, so he started it again (I pinch a little hole to make the capsule absorption faster and better). That was also Dr. Mischley's suggestion. She also added Vit D 10,000 IU (he was taking that already).
He also takes AMLA , B-12, 6,000 mcg Tricobalamin by Designs for Health, Ashwagandha, Bacopa, Niagen, MAGNESIUM THREONATE, and ReMag, liquid magnesium by Dr. Dean. With each meal he takes Betaine HCL which both Dr. Mischley and Cleveland FM doctor prescribed/recommended.
Liquid Probiotics by Mary Ruth. He was also taking B-complex liposomal by Designs for Health. When he finished it, I ordered another good B-complex, but hasn't arrived yet. Last but not least SAM-e 10 drops a day.
His LO is 10mg a day. Think about increasing it to 20mg.
They are all good supplements, but who can tell for sure what helps most!
Are these supplements advised by health practitioners? 6,000 mcg B12 ?
I think Betaine HCL and SAM-e at the same time takes body way beyond over-methylation which cause restlessness and anxiety and many other related symptoms.
Symptoms related to under-methylation and over-methylation can be found here.
Thanks, Kia! Interesting find. He exhibits symptoms of both, over and under methylation, go figure.
Yes, Betain HCL was recommended by both doctors due to his inability to absorb nutrients. Dr. Mischley also recommended to him to eat soft foods and take the liquid form of vitamins. He lost a lot of weight and he's been trying to gain back some. He has and we are both very happy. He takes SAM-e for depression, didn't know about the harmful combination of Betain HCL and SAM-e. Guess I have to ask Dr. Mischley.
As far as B12 is concerned, he was recommended to take 5,000 mcg. Guess we can lower it and see what happens. It's a water soluble vitamin anyway.
Yes, those doses are high and more in the therapeutic range which would help explain the improvement in your husband. All good stuff, but I can see why it is almost impossible to tell what is working in this combination. The thing about this regimen is that it is aimed at so much more than PD. This regimen should go a very long way in improving overall health, PD, longevity and circulatory health as well as warding off unwanted health issues !
Is it hard remembering to take it all each day?
My experience with the "melatonin hangover" is that it goes away within two weeks of starting. I imagine the body some how adjusts to the extra.
Maybe she is worried about the extreme high cost? I know that I would probably give everything that I have including my next life if someone gave me my life back. But I have been burned so many times with false hope that I am about ready to give up trying. She is probably just going to rely on her own research. I don’t think that it necessarily means that your choice is bad or doesn’t work.
I am glad that it works for your husband and I pray that it continues to work out for him.
Right now, I have put all my faith in Bydureon/Exenatide and I hope that works. I am seeing results, but I am also seeing that it is a very difficult job to titrate down the Sinemet/Rytary as the body starts to respond to Bydureon.
For that matter, this is probably what others are experiencing with B1/Thiamine and maybe the difficulty that some have with it is the inability to down titrate the Parkinson’s meds.
If they ever have a cure, I hope that they have a protocol for weaning people off the Parkinson’s meds while the “cure” takes effect.
It seems high cost but when you read the list of ingredients it does have many recommended supplements for PD all in one product which makes it easier. If you bought them all individually before as we did it isn’t any more expensive, plus some things are difficult to source on their own.
My husband has only been on one sinemet per day so far and we are trialling swapping half out for mucuna too. So it’s not quite so bad to reduce it from such a small amount.
She is using her own protocol on her patients. I believe she didn't want to get involved with different and unknown to her therapy protocols. It does make sense.
I ve been following the B1 dosing and results with interest on this website and for everyone who has posted about their experiences with it. Especially to Art and Roy who have helped so much with their well researched information.
My husband began in June this year adding 1 gm twice a day to his supplements, and has noticed slight increase in arm swing, sense of smell returning and no progress of symptoms.
Saw new Neurologist today who spent over an hour with my husband.
He kept C/L dose the same 4 x 100/25 a day which he has taken for 4 years, since diagnosis. Added in Rasigiline to help dopamine last longer and help with intermittent slight tremor.
He was happy with supplements my husband is taking, which surprised me and said carry on!
Also replacing Tamulosin, a treatment for enlarged prostate with Terazozin a similar drug which may help slow Parkinsons progression and is being researched for repurposing.
This is very good news! The fact that your husband is starting to respond to HDT/B-1 is also very good news because it implies that it may slow or halt disease progression based on what Dr. Costantini has seen in his office patients in Italy over the past 7 years. The dose also sounds good because Dr. C has said that the correct dose should only show improvements over a period of roughly 6 months though some members have reported new benefits beyond 6 months!
I am always so happy to read comments like yours! We have an appointment with our Urologist on Wednesday to talk to him about Terazosin. Coincidently, his wife has Parkinson's.
We feel for the first time much more positive for the future. Seeing a Neuro who is keen for my husband to take supplements( perhaps he can see how much it helps) and not trying to up his C/L meds which isn’t needed at the moment, feels really good. We now have access to a Parkinsons nurse for the times when you need info for any problems that arise.
I also feel that the help given to us by this community has been amazing and helps us to deal with this difficult condition. It also gives us confidence to deal with it.
Having a doctor/ neurologist / MDS who is willing to consider more than just standard PD meds is a huge positive for the both of you. So many members on this forum have reported that their doctors are not interested in entertaining the idea of the use of alternatives and that has also been the experience of my friends with PD. Only a few members have reported that their doctor is open to the discussion and use of alternatives.
This forum is a great place for some of the latest information about PD and has some very knowledgeable members as well as a tremendous amount of practical information on the use of most meds used for PD. This forum also has a lot of practical experience from "the other half"which can also be very useful for a husband or wife who is trying to do their best to help their PD partner.
Overall, this is a very good place to be, in order to stay abreast of everything PD !
With B1, has there been any research to try to find an objective measure of dosing so that it isn't purely based on symptomatic results? Are blood levels stable with supplemental dosing for a certain time period or do they fluctuate? What about urinary levels when taking high supplemental dosages? Trying to pin an associated correlation of an objective value with symptoms could really improve the potential results people get, as it is very likely that the range of needed intake can vary drastically from patient to patient based on their physiological status.
Dr. Costantini initially tested his HDT patients prior to initiating HDT and he found normal in range serum levels of thiamine, but once started on HDT those serum levels are off the chart.
On this forum the effective daily dosing range reported by forum members, varies between 25 mg / day up to 4,000 mg / day. One size does definitely not fit all! Forum member Sunvox (Joe) posted a data sheet showing how dosing affects serum levels and you can find that by searching his profile page or sending him a chat message if you are unable to find it.
Thank you, Art. I’m about to dive into the whole B-1 thing. I started just as Dr C went away, and so that got me distracted and trying other things such as boxing classes, intensive exercise, etc.
The different exercising is excellent for those who still can, so that is a great way to spend some of your free time!
The B-1 is like everything else that is supposed to help PD, it generally involves trial and error to see what works at what dose and if it works effectively enough to make it worth continuing to take it. There have been a lot of B-1 testers and current users on this forum and the results are definitely mixed. At the best, people are reporting a greater than 90% improvement in symptoms and at the worst, people report no benefit. So as you can see there are no guarantees, but because the majority of forum members have found varying degrees of benefit, HDT certainly seems at least worth considering. It has a good safety profile, is fairly easy to get, is relatively inexpensive and does not require a demanding or complex means of delivery. There have been some side effects that you should be aware of such as an allergic rash that in some cases precludes the use of B-1, but in other cases is able to be worked around by lowering the dose and Dr. Costantini suggested that use of an antihistamine might work if the rash is not serious, that is of course assuming you had good results from the B-1 other than the rash. There have also been reports of very significantly elevated blood pressure and in these cases Dr. Costantini suggested reducing the B-1 dose and consulting with your doctor to either start you on a blood pressure medication or adjust the dose of your current blood pressure medication . There have been some gastrointestinal issues that were able to be worked around for the most part via dose reduction. In any case, I am including a very comprehensive link below that will cover all of the above and much more regarding HDT/B-1, which you should fully read before getting started with B-1 again. To me, one of the most important benefits that Dr. Costantini has described about B-1 is its ability to slow or possibly halt disease progression.
On this forum there have been some discoveries along the way. Originally when B-1 was fairly new on this forum, it was generally thought that the correct starting dose was 4 grams per day, but since then, forum members have reported that the effective dose for them varies between 25 mg / day and 4,000 mg / day. Another thing we have learned is that the time to see a first symptom improvement can vary significantly from person to person. At the best, people have reported benefit from the very first day of use while at the longest, others have reported no benefit until the 3 to 7 month range and once the first benefit was seen in that 3 to 7 month range, other benefits followed shortly after.
As you can see, if it takes up to 7 months to see a first benefit, that would be very difficult for a person to stick with a supplement that long with no apparent benefit! I always say that the members who see benefit in the first month or so are the lucky ones because once you see that first benefit, it is much easier to stick with daily dosing. Another problem when it takes months to see any benefit is that sometimes there is a benefit, but because it appears so gradually over months, some people feel that they have gotten no benefit unless someone that they haven't seen in a long time happens to mention something like, gee, your tremor is so reduced from the last time that I saw you or a friend may say something like your voice is so much clearer and stronger now or it doesn't look like you are shuffling when you walk any more or your face shows so much more expression now. This is the very reason that Dr. Costantini had all of his patients take regular videos of the themselves walking, talking, writing and a push test. The videos more accurately depict improvements from the first video to the next and the next. Even though Dr. C is not currently available, I believe it is still important to take the videos for your own reference and I further suggest that you make the videos longer and more detailed such as a video showing you going up and down stairs. Longer videos with more detail will make it much easier for you to see any changes over time. Forum members have commented that they really didn't think they had improved until they went back and watched the first video compared to their latest videos! I have a friend with PD who felt the same until enough people told him that he was obviously improved!
So although HDT/B-1 seems straight forward and simple, sometimes it isn't! Can it try your patience as you try to find your optimal dose? Yes definitely!
Here is a link to a page which should answer most if not all of your questions about HDT/B-1:
Firstly, thanks for all you have done and continue to do to keep us informed and exchanging information about HDT/B1. I believe I should add myself to those who are not experiencing progression, which I feel is related to the HDT protocol.
I first started with Dr. C in July 2018 and he had me work up from 1g to 3g but my retropulsion/shakiness got worse and he had me stop for a week in December.
(December was the last email that I received from Dr. C, who was so generous to our community. I trust you will keep us advised of any improvement in his condition.)
Since then l have been figuring out the dosage on my own. A major factor that changed during this period of time was that I started C/L in November 2018. Dr. C was aware that I was going to start and coached me before I did, since it was my first experience with PD meds six years post diagnosis. He emphasized that I would likely be able to lower the dosage of the C/L because of the HDT.
I have worked my way up to 1G a day in small increments since this past January, staying with 1g since September. Particularly since then I have noticed that my balance is much improved. My arm swing is improved as well. But as for all the symptoms, l do not sense they have progressed since the initial improvement post meds.
Not forgetting Dr. C’s writing several times that I would likely be able to reduce the CL once on the correct level of HDT, l welcome others sharing if and how they have done so. Right now I am on 25/100: 1 In the morning, 1 in the afternoon, and 3/4 before bed.
This is a copy and paste of a reply by forum member nellie58 on 10/7/2020 :
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.
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. 🙂
This is a copy and paste of a reply by forum member reedboat2 on 10/7/2020.
reedboat2
reedboat2
1 hour ago
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
This a copy and paste of a post by forum member RoyProp on 10/7/2020 :
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.
This is a copy and paste of a reply by forum member PEB69 and a reply by forum member chartist/Art on 10/7/2020 :
PEB69
PEB69
17 minutes ago
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.
.......................................
chartist in reply to PEB69
A few seconds ago
PEB69,
"Jittery" was one of the indications that Dr. Costantini said was a clear indication of B1 overdose on the HDT/B1 FAQ page. Look at #3.
I often worry that new members and even older members sometimes miss some of these posts. I know many members have experienced this effect of the B1 dose that has been effective for many months and suddenly their symptoms worsen and they begin to think that B1 is no longer working for them when all that is needed is an appropriate dose reduction. Forum member Ernie Diaz started at 4 grams and stayed there for many months and has more recently lowered his dose significantly to good effect!
I truly feel bad for anyone who has stopped B1 due to this known effect of HDT, so I try to bring it up every so often, just in case. Even long term users sometimes forget, but Dr. Costantini did not mention this fact for nothing! He was well aware of this issue and fortunately left the information with this forum while he had the chance to.
I’ve been taking b1 -500 mgs for several years. My functional medicine Dr wants to increase it to 4x that amount gradually . I have Parkinson’s , osteoporosis, gut issues and Epstein Barr Virus . I’m on a lot of supplements and for that reason I’m not able to judge the amount of b1 related to Parkinson’s. Thanks for sharing! Appreciate your help!
THANK YOU FOR THIS POST!!!! I had found this too by guess, trial and error, but this helps to confirm my apparent discoveries by default. Now if I can only make the time and well being enough to read this forum daily!!! Maybe WE can discover a cure and beat big pharma to the finish line!!!!!!
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). She also added intranasal glutathione, liquid COQ10, fish oil and turmeric. Although he was taking all of these supplements before, she asked him to replace them with the liquid form as they are best absorbed by the body. There were no real changes to his protocol, just different form of vitamins/supplements (liquid vs capsules/pills). She also added LO, Hemp Max soft gels by Douglas Labs, and Melatonin. 
Official Letter to my neurologist
Trying to find that elusive Magic B1 dose
Thiamine therapy for yopd
