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DR. COSTANTINI & DR. COLANGELI ANSWER 57 FREQUENTLY ASKED QUESTIONS (FAQs) ABOUT HDT / THIAMINE / B1 PROTOCOL / Email : carapetata@libero.it

Very briefly, If anyone has asked questions of Dr. Costantini and have gotten a reply concerning his thiamine/ B1 protocol, please add them to this list if you think they are relevant!

Art

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Dear Dr. Costantini,

I made a list of some questions that I think might be commonly asked. If you think any would be useful, please add them to your list of frequently asked questions.

Thank you!

Art

1. What is the standard starting dose of thiamine?

A : A “standard dose” of thiamine in our protocol does not exist. The dose that we have been using more frequently in PWP is 4g/day orally (tablets) or 2 injections of thiamine IM of 100mg each twice a week. However the right dose is always tailored to the specific characteristics of the patient: weight, duration of the disease, severity of the symptoms.

2. Does the dose stay the same or does it have to be adjusted up or down over time?

A: Initially it is possible that the dose is to be adjusted based on the patient’s response to the treatment. Once the right dose has been found, such dosage should not be changed and it should be always effective. The “right dose” is found when the disturbed balance is suppressed and the patient regains normal balance. In other words, the right dose is the one which normalizes the pull-test. On the basis of our observations, the right dose is the one which suppresses the majority of the non-motor symptoms and at least 50% of the motor symptoms. The right dose does not cause “over dosage symptoms” (see further questions for more information on this point).

3. What does it mean if I become jittery after starting thiamine, even at a lower dose?

A: On the basis of our experience, if symptoms like jittery appear at the beginning of the treatment, this may mean that such dose of thiamine is already too high for the needs of the specific patient.

4. Is thiamine compatible with all PD related drugs?

A: Thiamine can be administrated in association with any of the existing therapies for PD as well as it is compatible with any other drug on the market. The intramuscular injections (usually the 100 mg phials shots) must be performed by qualified personnel in order to avoid bruises in patients using anticoagulant drugs such as Coumadin, Sintrom and similar.

5. What is a realistic time line before symptom relief is seen?

A: The oral therapy produces an appreciable improvement within a few days, but sometimes the patient may not realize it. This is the reason why we always request and perform a video recording of the patient before and after the therapy, at regular intervals, to be used as reference. Within 30 days in most of the cases, a clear and appreciable improvement of the symptoms is detected by the patient as well. A further improvement is observed within the following two-three months. There exist an oral dose (OD) and an intramuscular dose (ID) that differ in absolute quantity but which are equal in effectiveness. However, if the intestinal absorption is not optimal, the OD may require to be increased to counterbalance for this condition, or to a certain level the patient may need to be switched to intramuscular regime and have the optimal ID.

The effectiveness of one intramuscular injection (100 mg) is nothing short of impressive in all cases we observed. One phial determines an almost sudden improvement that is clearly appreciable by the doctor as well as by the patient. This improvement concerns primarily the facial mimic and expressions, the muscular tone, the mood of the patient and his/her movements and speed, and the reduction of the tremor. Within one hour the UPDRS improves by some 30-40%. The improvement is clearly visible by the videos recordings before and after the shot. In all of our patients we carry out the UPDRS and the recordings. The patient is asked to speak and his/her face is recorded, is asked to walk, write, and perform other activities. In addition we always carry out the pull test. Subsequently, the patient, as in the case of the OD, will continue improving for the following two months or so reaching a stable clinical condition.

6. Do tremors eventually go away over time?

A: The tremor is highly reduced, though being one of the sturdiest symptoms of PD usually it is indispensable that l-dopa is also administrated to the patient. It is rare that a patient who follows our protocol does not experience an appreciable or often even nearly complete regression of the tremor.

7. What other vitamins or supplements should I take to optimize the benefit from thiamine such as magnesium, other B vitamins or vitamin D?

A: In our experience, we do not add multivitamin compounds to the treatment with high dose thiamine. Thiamine HCL usually is effective against the symptoms of PD (as well as the other diseases we have studied) alone. In the case in which the response of some patients requires a further enhancement of the therapy, we may add low doses of other group-B vitamins and magnesium. It should be noted that vitamin B6 facilitates the action of peripheral dopamine-decarboxylase. Since Madopar and Sinemet contain strong inhibitors of the peripheral decarboxylase it is rare that vitamin B6 produces negative effects. However, even if rarely, it may happen that high doses of vitamin B6 may reduce the quantity of l-dopa which enters the brain and create a worsening of the symptoms within a few days.

8. Is thiamine ever contraindicated with other health issues that a person might have simultaneously with PD??

A: In literature thiamine is not contraindicated in any disease, and actually in many cases is deemed useful in a number of diseases such as diabetes in addition to other drugs.

9. If I miss a dose or a day of thiamine, will my PD symptoms come right back?

A: No. If a patients misses one day or so of thiamine treatment there will not be any consequence. Once the patient is stabilized, after three or six months, we usually suggest short breaks of one to two weeks without thiamine. Some patients suspended the high dose thiamine treatment and the symptoms of the disease came back after two-three months; thus, these patients restarted the high dose thiamine therapy as before and, like before, the symptoms disappeared again.

10. Are there many things I should not take with thiamine such as alcohol?

A: Based on our experience, if consumed with moderation (i.e. 1 glass of wine a day), alcohol does not affect the condition of the patient treated with our protocol. In Italy at least, wine is a quality product which, again with moderation, is not detrimental to the health of the patients. I suggest that spirits and liquors and large quantities of alcohol are not consumed by PD patients. In general, a healthy lifestyle is suggested and should be maintained by any patient.

11. Are there known side effects associated with the use of high dose oral thiamine?

A: The only known side effects associated with the therapy we devised are linked with over-dosage: when the dose of thiamine is higher than the needs of the patient, then there is a worsening of the symptoms of the disease. This, as stated above, flags the need to adjust (usually reduce) the dose of thiamine.

12. Is it better to take thiamine on an empty stomach or with food?

A: Some of our patients reported to us that they have better effects if taken on an empty stomach, however as far as we are concerned, thiamine is effective also after a meal.

13. What happens if I take my thiamine later in the afternoon or night?

A: If high oral doses of thiamine are taken later during the day (evening or night) there may be difficulties in falling asleep. Conversely, if taken in the morning and early afternoon, patients reported an improvement of their sleep.

14. Do PD symptoms continue to improve further after 6 months of everyday use?

A: Based on our observations, patients reach the peak of the improvement within 3-6 months and no further improvement was observed past that.

15. Are there some PD symptoms that thiamine does not seem to help with.

A: Thiamine is highly effective with all symptoms, both motor and non-motor ones.

16. Will thiamine work for all motor and non-motor PD symptoms?

A: Thiamine is effective against both motor and non-motor symptoms. In PD the non-motor symptoms are less pronounced than motor ones. Almost always, the high dose thiamine treatment (thiamine alone, without other drugs) is capable of suppressing or quasi-suppressing symptoms like depression, fatigue and cognitive impairments. Often the bowel movements improve, so does the sexual potency and the sense of smell.

Motor symptoms are tougher to eliminate and do require the addition of adequate doses of l-dopa which are made incredibly more effective by the high dose thiamine protocol though. The protocol we devised in fact, always requires the addition of l-dopa in order to suppress the motor symptoms. Out of 2,500 PWP we have five patients with very recent emergence of PD who are treated only with high dose thiamine and they do not present any symptom of the disease. We observed that Thiamine also favors the regression of dermatitis and rehydrates the skin.

17. Does thiamine work for other health issues?

A: We have treated and published peer-reviewed articles about the following health issues in which thiamine is effective like in the case of PD: fatigue in inflammatory bowel diseases, post-stroke fatigue, fatigue in multiple sclerosis, fatigue in thyroiditis disease, fibromyalgia, spinocerebellar ataxias, Friedreich ataxia, Steinert disease (muscular dystrophy), dystonia, essential tremor, cluster headache, and migraine.

Studies on further health issues and specifically neurodegenerative diseases are currently under development. Stay tuned.

18. What are the symptoms if my thiamine dose is too high or too low?

A: If the dose is too high, rarely but sometimes it has happened, can determine the worsening of the symptoms of PD. Sometimes after an initial improvement, if the dose is too high, some symptoms that had disappeared may manifest again. The therapy with high dose thiamine has to lead only to positive effects, if any negative effect is observed by the patient this means that the dose is to be adjusted. A dose that is too low does not lead to any beneficial effect on the symptoms of PD.

19. Will thiamine have any effect on my "on times and off times"?

A: The treatment with high dose thiamine that we have devised increases the duration of the ON times and reduces the OFF times. It also reduces drastically hyperkinesia and dyskinesia.

20. Does thiamine have any effect on sleep?

A: Our patients reported that the high dose thiamine therapy has beneficial effects on their sleep.

21. Is it possible to get a rash from taking oral thiamine.

A: Yes, very rarely it may happen.

22. What effects can thiamine have on mood?

A. Usually, thiamine (employed alone and without the addition of antidepressant drugs) can improve the mood of the patient in a satisfactory manner.

23. Are there times when I should reduce or increase my dosage such as under highly stressful conditions?

A: In general, there is no need to vary the dosage once the right dose has been found and confirmed.

24. Is it better to start at a low dose and slowly increase the dose each week, or is it better to just go to a full dose right at the start of thiamine therapy?

A: It can be done in both ways. If the practicioner is experienced enough and has the chance to follow closely the patient (like we do with our patients) the treatment can start immediately with a dose assumed to be “right”, other times it is best to start increasing gradually until the symptoms improve satisfactorily. Clearly, without an in-person checkup it is difficult to guess right away the correct amount for the patient and some adjustments may be necessary.

25. Can a person have such severe PD that thiamine will no longer be of benefit for symptom relief?

A: In our clinical experience all patients responded favorably to the therapy, regardless of the severity. Clearly, the results of the therapy depends upon a number of factors, including the amount of neurons that can still be brought back to life by the treatment.

26. If I get a cold or flu, should I continue taking the thiamine?

A: Yes

27. How many PD patients have you treated with thiamine?

A: Certainly more than 2,500 in Italy alone. Currently we are assisting a number of PWP remotely with encouraging results. The results are impressive and they last overtime. Many of our patients are following our protocol now for 5, 4, or 3 years and are in rather excellent conditions considering their condition when they started thiamine treatment. The progression of the disease has been halted. Given the efficacy of the treatment and the lack of support from the scientific community, many patients overseas apply a DIY approach which we do not recommend but can understand. Those patients have the right to claim that their neurologists open their eyes to the possibilities offered by this therapy and try it themselves to embrace its potential. How many more patients could be helped if their doctors would put aside their skepticism and egos and humbly open up to try an learn more about the use of high dose thiamine?

28. Are there people who can not tolerate thiamine treatment?

A: We had 1 patient out of more than 2,500 who experienced vomit every time she assumed thiamine in high doses and thus the therapy did not apply to her.

29. Does thiamine help with depression and or anxiety?

A: Normally the high dose thiamine treatment improves depression and anxiety considerably.

30. Does thiamine alleviate Lewy Body Dementia and all forms of PD?

A: We have some encouraging data but it is too early for us to express an opinion on this aspect. The most encouraging of those results were detected in the corticobasal degeneration (CBD). The doses employed are much higher than those used in the treatment of PD.

31. Can thiamine help a PWP with pain symptoms?

A: A patient from the UK, male 99.5 kg, experienced as principal symptom a “terrible pain”, in the words of his wife who contacted Dr. Costantini in late May.

After the initial discussion and first few days of treatment she reported that her husband was completely pain free.

Many other of our patients affected by relevant pain, informed us that this disturbance regressed completely or nearly completely already within a few days (oral therapy) or within a few hours (intramuscular shots).

32. Do people taking Levodopa and following Thiamine protocol develop Dyskinesia?

A: I have consulted with Dr Costantini about your query and I do confirm that on the basis of our observations: our patients who do use l-dopa in addition to thiamine have not developed dyskinesia. This is true for patients who are under treatment for 3 to 5 years (we invented this treatment in 2013). However, you should inform Dr Costantini or myself about your current l-dopa regime and he will see if it needs to be adjusted.

We do consider the time frame above “long term” but further studies are necessary to confirm that patients will be dyskinesia-free lifelong though we are optimistic.

We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to DYSKINESIA if used together with the high dose thiamine. The treatment is based upon the hypothesis that the disease leads to the death of neurons through its interaction with the intracellular metabolism of thiamine. This action can be blocked by the administration of high doses of thiamine. The neurons, once no longer burdened by the primary cause of the disease, restart their activity and this leads to the improvement of most symptoms. Continuing the therapy, the neurons might stay healthy regardless of the existence of PD. Thus, in addition to a rapid improvement of the symptoms we observe also a freezing of the evolution of the disease. However, the primary cause of the disease is not directly interested by the therapy. High dose thiamine does not eliminate the primary cause of the disease but blocks all damages inflicted by the disease. Therefore, the high dose thiamine is a pathogenetic therapy. The therapy thus limits the degeneration of the nervous system which continues to work efficiently when freed from the limitations posed by the disease. When the high dose thiamine is suspended after a cycle of treatments of three months, the beneficial effects do not cease right away but start to diminish within the next two months. We believe that this happens because the mechanisms of action of the disease have a certain buffer effect which in turn requires a couple of months before getting back to the status of the symptoms before the use of high dose thiamine.

33. It seems that your preference is for most people to stop use of all supplements in order to start thiamine therapy and I assume this is so that you can have the clearest picture of exactly how these patients are responding to the thiamine therapy itself and in turn this helps you to determine if dose adjustments are needed? You are also trying to make sure that the other supplements are not clouding the effect of thiamine therapy?

If this is correct, at what point can a patient start to add back supplements they were already taking as part of their daily regimen?

A: That is correct. We usually prefer to have a glimpse of how the high dose thiamine performs alone before evaluating the need for further supplements to aid its absorption (e.g. magnesium, etc.). Usually, after 3 months from the beginning of the therapy, we reach the point where the thiamine protocol has been correctly tailored to the needs of the patients and in case the regression of the symptoms still leaves room for improvement, we add other supplements and observe possible changes for further 3 months. Often times the action of thiamine alone is satisfactory for the patients and rarely we need to add other supplements, which are in any case in small doses.

34. If thiamine usage late in the day does not keep me awake at night, is it okay to take it before dinner if I miss my lunchtime dose? Will taking the second dose before dinner help to keep a steady state of thiamine in my system?

A: If the use of thiamine does not lead to difficulties in falling asleep or sleepless night there is no reason why a patient should not take before dinner. As for the stability of dose in the system we cannot express an educated opinion since the testing of thiamine levels in the blood is an uncommon test and perform it at different times of the day would require (once again...) a dedicated study which we have not been able to carry out with our resources to date.

35. You mention the "push test" on occasion, can you you explain this in detail or link to a video that describes this procedure?

A: The push test is a common component of the UPDRS scale for PD. At this link (https://www.sralab.org/rehabilitation-measures/retropulsive-pull-test) you can find an explanation of what that is and how it should be performed and evaluated by the neurologist.

{ I am adding this to try and clarify about the push test. Here is a video of Dr. C performing the push test on a patient. He stands behind the patient and gives a firm pull or tug at the front of the shoulders so that they are quickly pulled backwards. This puts the patient off balance and he is checking to see how quickly the patient regains their balance. Specifically he wants to see if you can regain your balance without having to take a step backward or only one step backwards. If it takes more than one step or you fall, then balance is not optimal and he may adjust the thiamine dose based on this test.}

36. A forum member, st8farm, asked if you have an interest in patients who have a DAT scan for later comparison?

A: The DAT scans are a useful system to compare the progression of the disease and the possible actions of the high dose thiamine therapy. Especially if the patients have recent DAT scans and will be willing to compare the results with a future scan performed in 5 years (this seems to be the minimum time window to make reliable considerations) from the beginning of the therapy, that would definitely be interesting.

37. Can thiamine cause hypertension in some people?

A: It could, and if that does happen the doctor should operate either on reducing the thiamine dosage or adjusting the anti-hypertension therapy of the patient.

38. What is the longest period of time that you have treated a PWP with thiamine?

A: Five and a half years.

39. Some members on the HU forum are asking a question about your recent email about Levodopa and thiamine.

The members seem to agree that levodopa is not the problem as you stated in your email, but they feel the problem is the carbidopa that is often included with their levodopa prescription as both in one capsule. I believe the product is called Sinemet that has the levodopa and carbidopa together.

The question then, if you take carbidopa / levodopa (as Sinemet) will the thiamine still prevent late stage development of problems like dyskinesia?

A: Certainly. Yes

40. Does thiamine interact with warfarin?

A: Thiamine does not interfere with any oral anticoagulant. It must be taken by mouth and not by injection.

41. Can I use Benfotiamine instead of thiamine hci and still get the same results as thiamine hci?

A : We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thimine hci effectively.

42 . Forum member, Kia17,, recently asked Dr. Costantini how he determines when he will prescribe intramuscular injections of thiamine or oral thiamine in pill or capsule form?

A : When we began to study the effects of thiamine on fatigue associated with inflammatory-autoimmune diseases, in Italy there were available in pharmacies only 300 mg tablets for the oral therapy and 100 mg phials, the latter to be administrated intramuscularly via shots. Already starting from 2011 we realized that the phials therapy is 140 times more powerful than the respective oral dosage. In other words, in order to obtain the same clinical results of a patient taking 100 mg shots once a week, s/he should take orally 14 grams (100 mg x 140) of thiamine in tablets per week, thus over 7 days that means 6 or 7 pills (300 mg each). This was immediately felt as an issue both for the cost of the therapy as well as for the need to swallow a large number of pills each day, lifelong. It should be noted that at that time I was little aware of the potentialities of the internet and the opportunities it can offer to consumers, and in this case to patients. Therefore, back then, if in order to treat the fatigue a reasonable number of pills was necessary, we would stick to the oral therapy, whereas if the patient required 6+ tablets/day, we suggested to switch to an intramuscular therapy.When we passed to the treatment of neurodegenerative diseases we learned that the necessary doses were on average even higher. The dose that we find more commonly used among our patients in Italy is 2 x 100 mg shots per week. The equivalent oral dose would be 13 x 300 mg tablets per day or 8 x 500 mg tablets per day depending upon the availability of the pills and the difficulties to swallow that some patients may or may not have. In most cases our patients prefer the intramuscular therapy. After a few years of the intramuscular treatment however, the glutei begin to be affected by the treatment and it is necessary to switch, if even temporarily, to an oral intake regime. Most of our patients who have been treated with shots for ta few years now with 2 shots per week have no issue to report. The effect of intramuscular or oralthiamine is the same provided that the correct dosage is chosen depending upon the different administration options, but the phials have a much more immediate action the oral therapy is much slower and milder, possibly due to difficulties with the intestinal adsorption. Clearly all patients who are under treatment with anticoagulants must do with the oral therapy, regardless of the number of pills they need. In Italy this is how it works: the patient comes to the ambulatory and is examined. Onthe basis of the examination he receives a prescription to purchase the phials or the equivalent dosage in the form of tablets. A nurse performs the injections. However, sometimes the patient himself is capable or has someone to assist him/her (usually spouse or relative) who is capable of performing an intramuscular injection.On the internet, both phials and tablets (up to 500 mg) are available even without a prescription. It is worth it to point out that in the cases in which the patient cannot take care of the intramuscular injections alone and thus requires the support of a nurse or his regular practitioner, there have been often reluctance from other neurologists or MD to perform the injections as per our therapy. This is why, when I do not have the opportunity to examine the patient directly, and thus have to resort to email exchanges only, I tend to prefer the oral therapy for ease of use. Based on my clinical experience then, one reason that made me prefer the oraltherapy in some patient is also due to the observation (to be confirmed) that patients of Anglo-saxons origins (Northern Europe and the USA) and Africans require much smaller doses to reach the same clinical results of their Italian mates. This makes it easier to go for an oral therapy in these cases. Currently, I have email exchanges withabout 300 PwP and many required that doses were halved as compared to my initial estimate. This may also be due to the lack of proper assessment of the status of the patient that is obviously much less accurate without an in person examination of the patient.

43. Will your thiamine protocol be of any benefit for PWPs who have delusions, illusions and hallucinations?

A : Yes, very often, when they are not due to prescription medications, but are a direct effect of the disease. Medication-related issues regress only with dose reduction or replacement of the offending medication.

44. Does your experience with thiamine in your patients suggest that thiamine can prevent PD dementia from getting started in the first place or can it have a positive impact in a PWP who already has PD dementia?

A : Usually cognitive disorders in PD are mild or medium. These have good regression with thiamine that also prevents the appearance,but there are cases where the patient appears to have severe dementia and motor symptoms of Parkinson's Disease. In that case we have no data, but the impression is that dementia is not very sensitive to treatment.

45. Do you know if thiamine is compatible with DBS, and if it is, is the dosing the same or different ? Can DBS mask or hide a thiamine dose that is too high?

A : Thiamine is DBS compatible and cannot mask anything. Dose remains unchanged from non-DBS.

46. I recently watched a video that said that diuretics can block certain thiamine activity as it relates to the heart and I was wondering if that may apply to the brain to some extent also? Could it be a factor in how some people respond to thiamine treatment?

A : Diuretics can block some of the activity of thiamine, but I don't think they are a factor that interferes with the response to thiamine in Parkinson's

47. I was wondering if thiamine has shown benefit for peripheral neuropathy related to PD and or not related to PD?

A : Unfortunately, we have never been able to observe and treat a case of PD with peripheral neuropathy. However it is a classic approach to many neuropathies to use vitamin B-1, B-6 and B-12.

48. I have another question regarding the "push test". Should this test be performed during "off time" or during "on time"?

A : It is better to do this during "ON TIME" because during the off periods the test can sometimes not be carried out and can also be distorted by facts not strictly related to balance disturbances.

49. Recently it has come to my attention that there are some PWPs who basically are afraid to try thiamine because they have read of the ups and downs of symptoms that can come into play during the sometimes frustrating period of trying to determine the correct dose of B-1 in each individual. The fear is that if I get worse than I already am, what if I don't get better if I completely stop taking B-1! This is a legitimate and important concern that needs to be addressed, so I wrote Dr. Costantini to ask about this important concern by PWPs who are seriously considering testing B-1 and the following is his answer.

A . We have never had a case that has worsened irreversibly. As you know, we treat about 4000 patients in total. On the other hand, the rationality of the therapy already excludes it. How can a constituent element of our organism cause us permanent damage at the dosage we are using? In the literature there are some cases treated for many years (with doses equivalent to those we use) that are carriers of a genetic mutation of genes that encode the transport proteins of thiamine inside the cells (thiamine transporters). Even in these cases, nothing suspicious has ever been reported and there is no possibility that high doses of thiamine could cause permanent damage of any kind.

50. Some people have reported that when starting thiamine they soon develop a worsening of symptoms and consequently stop B-1 because they think it doesn't work for them. I have seen people report this multiple times. This is the problem with trying to go it alone as opposed to following Dr. Costantini's advice of staying in constant contact with him via email while testing B-1 !

For this question I asked Dr. Costantini to address the issue of people who find their symptoms worsening early on in the B-1 testing process as this is a very critical time that can make or break the protocol for them and either result in leaving the protocol behind for good or continuing on to possibly great results and fortunately, the answer is simple! Here it is.

A . The sooner the worsening appears, the lower the dose of thiamine that will be required to make the patient feel good!

51. Once a person has established the correct dose of thiamine / B-1 and is stable including a very good Push Test response and a very good symptom reduction, will that person ever need to increase their other PD medications such as Levodopa / Sinemet? Is there any possibility that these standard medications might be reduced?

A. Once a person has established the correct dose of thiamine / B-1 and is stable, including a good response to the Push Test and a good reduction of symptoms, this person will never need to increase their other PD medications such as Levodopa / Sinemet or other drugs. There is a possibility that these standard drugs may be reduced especially if they have side effects.

52. Once a person has established the correct dose of thiamine / B-1 and is stable, including a good response to the Push Test and a good reduction of symptoms, if this person suddenly suspends thiamine what happens?

A . Nothing appreciable happens. The patient's condition does not change for 1-3 months. This is because the attack of the disease, not opposed by thiamine, starts again, but it takes a long time before it damages the cells again before they are healed by thiamine. We have numerous confirmations in this regard, so much so that in Italy we used to suspend thiamine one week a month to avoid risks of overdose and give the impression of "freedom" to the patient. Alberto's video on highdosethiamine.org (Dr. Costantini's website), after two years of treatment, it was recorded with the patient who had not had thiamine injections for three months. After this period the symptoms begin to reoccur, the same dose of thiamine begins again and in a short time everything returns as before the suspension.

53. Recently I asked Dr. Costantini if some PWPs can take B-1 by itself without prescription meds or other supplements because the question has come up multiple times on the forum. He sent his reply today and here it is. Importantly, please keep in mind that there is a very broad range of symptoms in PD and to a similar extent, a very broad range of PWPs at various stages of disease progression and though you may feel your symptoms are severe, Dr Costantini, in his broad experience may not feel the same because he is taking into account the fact that there are some very advanced stages of PD that he has seen in over 3,000 patients on his B-1 protocol.

A. When the patient has been diagnosed by us for a few months with a mild symptomatology and without any therapy in place, or we diagnose him at a very early stage, we treat him only with thiamine and often with lower doses than patients who are at a more advanced stage. The patient improves considerably and remains at a standstill. It is difficult, however, given the previous damage, that the symptoms, especially the motor ones, all have a total regression. The surviving cells, even if healed, are not able to do all the work that the system did when it was healthy. At this point either the patient is content to have some slight symptoms or get the complete abolition by adding to the treatment small doses of levodopa. We only have three patients who use only thiamine because they have had a complete regression of symptoms.

Furthermore, suppose that for any reason the patient cannot or does not want to take any kind of classical treatment for Parkinson's disease, the right dose of thiamine can give him, at any stage of the disease, an improvement that can range from 30 to 70%, while at the same time abolishing the progression of the disease!

Apparently Dr. Costantini wants to be very clear on this subject because he has responded to it in 3 separate emails! This is his third addition on this subject :

To be clearer: all Parkinsonian patients, at any stage of the disease have benefit on symptoms and stopping the progression of the disease, whether or not they are being treated with other drugs. We do not have any patients who do not respond to treatment with thiamine.

54. There are several forum members who are using mucuna pruriens (MP) as a non prescription substitute for levodopa and consequently there is curiosity about adding B-1 to a regimen that includes MP. Clearly some members are already using this combination to good effect and it appears from their comments that, like levodopa which has shown synergy with the B-1 protocol, so does MP. I asked Dr. Costantini to weigh in on this subject and the following is his answer.

A. Thiamine has the same beneficial effects regardless of what therapy the patient is using and is compatible with almost any type of medication, so any patient can do the treatment they want. Unfortunately I don't know the results of the addition of mucuna pruriens compared to carbidopa-levodopa.

55. A forum member recently asked Dr. Costantini, " Have you ever seen any side effects in the form of back and leg pain and muscle tension?"

A. Yes, when the dose is slightly excessive compared to the needs of the patient.

56. I recently asked Dr. Costantini if HDT would be of any use for other neurological disorders such as Multiple System Atrophy (MSA) which is a very debilitating, devastating and often fast progressing neurological disorder with limited treatment options. Here is his very gracious reply.

A. Thiamine is also effective in combating all atypical parkinsonisms (even in the msa). especially if taken at the beginning. The results are less than in Parkinson's disease but seem encouraging especially in slowing down the progression of the disease. The doses of thiamine needed are also higher. I already have a couple of patients online with good results. Give them my address, I will gladly help them.

57. I wrote Dr. Costantini to ask him the following question which I felt was very important for everyone to know the answer to! If a person develops a significant rash from HDT, does this mean that they are too allergic to use the thiamine at all?

A. Unfortunately, yes, they will not be able to use thiamine or the HDT protocol.

Dr. Costantini wrote me again to add in the following regarding rash and HDT :

Maybe something is still worth trying.

You can try to use a preparation of vitamin b1 pure, without any excipient in case the patient is not allergic to thiamine but to the substances that are used to compact it in the capsules or tablets. To us in Italy provides the pharmacy Severi of Grosseto that assured me that can ship it worldwide and I assure you at good prices. Contact them directly for information from them on their pure thiamine. Below is the email address.

The following is direct from the pharmacy to Dr. Costantini :

Dear Antonio, I'm going to give you the following words in English that you requested for your Anglo-Saxon patients: "Our Pharmacy prepares capsules of Vitamin B1 (Thiamine) in the prescribed dosages.The preparations is carried out with exclusively pure Thiamine (100%) without any added excipient. For more information, write an email to: info@farmaciaseveri.com "If you think you need to add something, just let me know. Cordiali salutiAndrea Severi

2) you can see if the allergic reaction can be contained with antihistamine drugs or with small doses of cortisone because trying to control Parkinson's disease is the most important thing.

Translated with DeepL.com/Translator

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

General information for the patient :

(Read carefully)

The dose of thiamine in the future can be increased or even decreased depending on the result obtained.

First of all you have to take a short videotape of your face while you speak, of your walk, and of the pull test made by a relative or friend. To determine the right dose in future we will follow thi criteria.

First of all we need to say that, if the dose of thiamine used is excessive for that patient, it can determine, after an initial improvement, a worsening of his symptoms previously improved (rarely a worsening already at the first dose can happen).

In this case we invite the patient to suspend the treatment with thiamine for a week, the worsening regresses and then it can be restarted with halved or lower doses.

The right dose should not give the side effects of overdose, improve at least 50% of all the symptoms of the UPDRS scale, and bring the "Push Test" to normality (score 0). The push test reveals almost always a pathological balance, even in the early stages of the disease. As a rule, if the examiner behind the patient gives him a strong push towards the shoulders, he / she takes a few steps behind or falls down. This symptom is only improved by thiamine being non responder to other treatments. The normalization of the patient’s response tells us the dose of thiamine is the right one.

The normal patient response to the push test is still or almost takes a step backwards.

173 Replies
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Thank you and Doc Cs for FAQ

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Very enlightening Dr. Costantini!!!

Thank you for all of your time, effort and advice! It is greatly appreciated!

Thank you also for staying up so late to make sure we got this information today!

Art in California

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Great post that will be very useful to new thiamine users. Thanks to all concerned.

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I thought I was fairly knowledgeable about thiamine and its effects on PWPs, but clearly, I was not! This is very good information and every person who is taking or planning on taking thiamine should read all of it !

Art

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Soo helpful, will refer to it often I'm sure.

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Well it will be convenient to have all of these FAQs in one place and hopefully thiamine users will add to it as more experience is gathered on this forum!

Art

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This is SO encouraging! I was just diagnosed three weeks ago. My only symptoms of any concern are micrographia and very slight bradykinesia (lack of right arm swing when I walk). Maybe it's just "placebo effect" and/or wishful thinking, but I've been taking thiamine for 7 days and both the handwriting and arm swing have already improved, as has my attitude. Art, I am VERY grateful to you, to the other contributors to this great website, and to Dr. Costantini and his staff. Thanks again!

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That's great news! Please keep us posted on how you do!

Art

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Dear Jim,

Please see this article

ncbi.nlm.nih.gov/m/pubmed/2...

Newly diagnosed PWP have shown the most encouraging response to the high dose thiamine treatment.

Thank you

Best regards

-Marco

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Thanks, Marco! I’m hopeful. 😊

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Dear Marco I have swallowing problem - can not swallow big 500gm tablet I just chew them ( 4x2 - b/fast & lunch ) is it ok ? I am struggling to arrive at the right dose (started in march'18 ) 4 gm /day is the most suitable dose but it gives symptoms of overdose off and on could it be because of chewing -thanks for your advice

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kalyan48,

Marco does not check this forum often, so it may be better and faster to just send an email to Dr. Costantini and then he will be able to review your current status all at the same time. He wants to stay updated so he can make dose adjustments that are likely to be most effective for each individual.

Art

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thanks for your feedback - will do as rightly suggested

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Thank you so much for this great information and encouragement!

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Jimcasterton, what dosing schedule are you using?

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1.5 grams in the morning and another 1.5 grams before lunch. (3 500 mg Solar tablets each time). Total of 3 grams per day. This is what Dr. C. recommended. I’m 55 years old and weigh 198 lbs. for whatever that may be worth.

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Hi Jim, I'm going to start with your protocol in the a.m.. I'm 49 and 197 lbs. I have tremor dominant Parkinson's. Until I could speak to Dr C. By the way how's it going with you?

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Do you have a contact email for Dr. Costantini?

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Wow. Best post in history.

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It took Dr. Costantini a little longer than he anticipated to get it translated, but he delivered on his promise!

Art

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Please people. Read and understand that Dr. C has been asked to submit peer reviewed double blind placebo research and has failed to do so, and his claims extend far beyond PD. There is great reason to be concerned that anything he recommends MAY not be justified by science. I believe thiamine has a role in helping, but I also think the available science says that the role of thiamine is limited. It is NOT likely a cure at all or even helpful for most patients. For sure there is NO supporting research from anyone other than Dr. C and that alone should make you all wary.

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Joe, you are correct, it is not a cure and Dr. Costantini makes no bones about that. He is very clear that if you stop taking the thiamine, the symptoms will return and the disease progression will resume.

Art

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That's fair. Time will tell, but at least for now, I'll go with cautious optimism.

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Sun vox

I have been following research in drugs for more than 10 years out of scientific interest and in some cases as an investor. Double blind trials are risky, very time consuming and expensive. Typically 3 to 8 years and $100 M to get past phase 3. This can only be justified for a patented product that will achieve sales of ten times the cost since most trials fail. Thiamine cannot be patented as it is already freely available and Dr C doesn't have 100 million dollars to waste. He has made a discovery that may be invaluable to PD sufferers but has no commercial value and has decided to offer it for free. Be grateful.

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I think another important consideration for PWPs is the excellent safety profile of thiamine. Dr. Costantini says he has treated over 2,500 patients with high dose thiamine with positive results. Yes, it is still anecdotal evidence as opposed to science based, but at some point the anecdotal evidence is showing value. If you read Dr. Costantini's answers, he is talking about just one patient who could not tolerate it out of more than 2,500+. Based on this, what is a PWP actually risking if they decide to try thiamine?

Art

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Exactly. I’m glad you made these points.

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Wriga, I’m with You. Familiar w drug trials. Grateful to have a non-harming option among us w B1.

Started THI HCL 500mg (at breakfast & lunch) working up to max dose 2,000 mg/d based on kg body wt and self reported dosing on this site.

Wrote (in Italian) to Dr.C (w details on my simple history and plan) today. Will report back as I video and document results. I’m early-on in PD, but have visibly obvious movement symptoms (Sx) that may improve and thwart progress of those “other” non-movement Sx.

Good to know we’ve got a professional with some ‘drug industry exposure’ like you,amongst us. And for all the scientifically-minded folks that contribute here, so often & willingly:

Thank you...

Thank Us!

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Dear Sunvox,

Thank you for this post. I would like to clarify that our group has been looking for the support to carry out a full-on double blind research since 2012, for years now. Well before reviewers suggested in their comments this obvious need we had done all we could to perform such a study.

As you seem well informed about our research and medical research in general I am sure you will understand the difficulties that an individual neurologist from the rural province of Italy faces in obtaining logistical, technical and financial support necessary for a double blind placebo research, as indicated by wriga.

We have ironically always found prompt criticisms from other neurologists about the lack of completeness of our research but never an equally prompt offer of support, or an offer to support at all.

That being said, please be informed that since we do not have the scientific community to support our studies we do not make claims about curing PD. We do observe in 99.99% of our 2,500 patients rather startling improvements and that is a fact that PD patients even know this forum experience themselves. We do call for the need to get further insights on the biochemistry and so many other aspects of the role of thiamine in PD (and many other conditions we are also treating, also with success).

Finally, we do make it clear always that every claim is based on our observations and that there are a number of unknowns that we first and foremost need to understand better. We always also inform the patients that this is an experimental type of treatment, with all that may be linked to it.

I wanted to make the statements above to reaffirm our intellectual integrity about this research and our work and that we operate in the sole interest of the patients.

Any patient should be given the right to try a novel therapy that might ease his/her suffering by their own doctors, and those who do not even look at our research and do not consider trying it are not paying the best service to their patients in our opinion.

Possibly, if wary doctors would leave their skepticism on a side and actually open to the possibility that science can evolve even from the clinical end, there would be more supporting research in addition to that of Dr Costantini, or possibly the contrary, science will prove that all of our patients have been affected by the placebo effect (even on motor symptoms, including tremor and balance...).

Thank you

Best regards

-Marco

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Amen

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thanks Dr. Antonio Costantini and Marco Colangeli for the information and the wonderful treatment that has given me life since the first day of application in September 2015 making me a without symptoms person today as at that time without any deterioration.

Thank you Art for having thought about creating and sharing this FAQ with Doctor Antonio Costantini and Marco Colangeli.

GioCas 56yo Italy Como Lake

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Awesome. Thanks

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It was about one in the morning his time when he and Dr. Colangeli got that sent out! Talk about burning the midnight oil!

Art

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Kudos to you, too, Art, for your hard work. Hat off to you!

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Despe, Thank you very much for saying so!

Art

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Respect.

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Excellent work thank you

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Immense appreciation and gratitude!

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Dr. Constantini, REAR BREED! May God bless him and keep him in good health.

I am in the process of composing my email to him. Hope he will have time to answer me.

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I think you mean “rare” not “rear”. 😊

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:) :) Oops. Yes, you're right!

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He definitely is!

Art

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Thanks so much for this! It’s hard to get treatment over email and communicate accurately. So to have this is great! I also don’t want to waste the Dr’s time with endless questions. Especially when he is treating my husband for free! Why don’t the skeptics test it out themselves to prove it doesn’t work?

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Dear Kelly,

Feel free to email Dr Costantini for any question or doubt, there is no silly question to be asked. Just please be patient if the answer doesn’t come swiftly and also do not be shy and send reminders weekly if necessary, we try to do our best.

Thank you

-Marco

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Thank you so much for your help and support. I was feeling so helpless. You have given me more time and support than any Dr I have visited and have given me hope!

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Me too....I am going to try this ....thankyou

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Write to the doctor if you have not already done so will be happy to help you, I'm sure Gio

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Thank you so very much !!!!

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In my haste to get this post up, I forgot something very important.......THANK YOU DR. COLANGELI FOR HELPING DR COSTANTINI TO GET THIS LIST UP IN ENGLISH AND FOR YOUR INSIGHTS ON THE THIAMINE PROTOCOL!!!

Art

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Dear Art and all,

Thank you for your patience with these FAQs. We have been overwhelmed with work and I myself have been out of the country for work often over the past weeks and couldn’t ensure the usual support to Dr Costantini, please excuse us if there have been a miscommunication to other patients and delays.

As you realized I can only find the time to help Dr Costantini outside of my regular working hours and this is why replies come at all times of the day and night.

We wish to thank Art for putting together these questions because they are hopefully going to help many patients, though please, even though we cannot ensure always swift replies and constant attention to remote patients, try and email Dr Costantini directly (better short, straight forward emails) for any doubt or further question. Do not feel shy or reluctant to ask even silly questions, you are patients and he will always find a way to get back at each and everyone of you, to the extent possible and I will try to change my sleeping pattern to support him best :)

Thanks again.

Best regards

-Marco

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Marco,

The thanks should be coming from this end to Dr. Costantini and yourself!!!

Both of your efforts are greatly appreciated by many here !

I have a question and would appreciate your opinion. Would it be possible to run an on going post on this forum where people can write their thiamine protocol related questions and they could be answered from Viterbo? It could just be a continuation of the Thiamine FAQ page that is already up, but by doing this, all of the answers to thiamine usage could be in one exact place and much easier to find overtime. As it is, there is so much information flowing through this forum that individual posts soon get lost in the shuffle. One page with all of the potential questions and answers about thiamine usage would hopefully become the go to reference page and ultimately lessen the email load to Viterbo. The 30 question FAQ page answers many of the questions , but there seems to be a few more cropping up.

I realize this may mean an initial overload of questions, but in short order, all of the regular everyday questions will be answered and less and less questions will require a written response from your end.

I'm basically looking for a way to streamline the constant stream of questions and answers that you must get and eliminate any redundancy .

Thank you for your time and efforts!

Art

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You would request HU/parkinsonmovement to PIN IT

Pinned Posts

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Thank you, Roy!

I have tried to contact them before and all I could get was technical help. Do you have a link to who to contact?

Art

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Thanks, Roy!

If Dr. Colangeli replies to my question, I will contact an administrator to see if they will "pin" the post/list.

Art

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and the FAQ. Contact I recommend is CPT_Helen

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Great! That is who I will contact. Thank you!

Art

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Okay I heard back from Dr. Costantini already and the information is the last post on this page.

Art

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Art, I would like to thank you publicly for the great help you are giving here on HU, with your expert advice that I follow and for much help in dissemination.

A person like you makes the difference wherever he is and we are proud and happy to have you here with us.

In four months on HU I learned from you and the others a lot of useful things from which I get great benefits.

The strength of a forum is given by the people who attend it, and we on HU are the best group.

We HU people listen to everyone, we are very critical but we do not close the door to anyone, our goal is to help and we love each other. We are honored by your presence here. Thanks for all the help you give! George

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RoyProp,

I have not as yet gotten a reply from CPT Helen. Do you think I should continue to wait or should I try contacting another administrator? If another, do you have a recommendation as to which one?

Thank you.

Art

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Dear Art,

Apologies for the late reply. Absolutely, that is a great idea. If technically feasible with HU, we believe this is great. Again, we strongly believe that with this experimental therapy a direct contact with Dr Costantini should always be established via email if not in person but this forum and your work is helping so many patients and us too so much that we really wish to thank you for your tireless work.

Great idea which is much appreciated.

Best regards

-Marco

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Thank you, Marco! Okay, so you and Dr. Costantini are in agreement that asking basic thiamine protocol questions right at the bottom of this thread will be a practical way to go....that will be great and probably quicker for the members here! These will be "common or general information questions about the thiamine protocol ", as opposed to case / patient specific questions which will still require an email to Dr. Costantini.

I am just waiting to hear back from one of the administrators here at HU, Cpt Helen, that RoyProp suggested as a contact person at HU. I sent her a chat message yesterday and as soon as she answers, I will let everyone know. I just need her approval and to find out if she can pin a link to a front page on HU if it is also agreeable with her.

RoyProp, do you know what is a usual or average length of time to get a reply from an HU administrator ?

Thank you!

Art

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no

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Roy, do you think it would be a good idea to try and contact the other four administrators to see if one of them answers sooner or would that be poor forum etiquette ? I imagine there is always the possibility that Cpt Helen could be away on vacation?

Art

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Give her more time

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Okay.

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Dear Dr. Costantini & Dr. Colangeli,

A forum memeber, danfitz, has a question about your thiamine restart procedure for when the current dose of thiamine is aggravating PD symptoms.

I had assumed the procedure of eliminating the intake of thiamine for a few days and then restarting at a lower dose was to allow the level of thiamine to return to its native level since thiamine is excreted so rapidly in order to determine the proper therapeutic dose. Thereby avoiding residual excess thiamine interfering with dosage determination. But I was wondering if this, in fact, was the reason or is there some other or additional reason. TIA

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Dear Art,

That is correct, thiamine is excreted naturally by the organism. We would suggest that Danfitz, if hasn’t done it already, gets in touch with us directly to go over his/her individual protocol, so that the decrease of the dose can be monitored by the Dr.

Thank you!

Best regards

-Marco

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Marco, thank you both for the answer and suggestion!

Art

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Dear Dr. Costantini & Dr. Colangeli,

Does thiamine offer anything in the way of pain relief for PWPs?

Thank you!

Art

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Dear Art,

A patient from the UK, male 99.5 kg, experienced as principal symptom a “terrible pain”, in the words of his wife who contacted Dr. Costantini in late May.

After the initial discussion and first few days of treatment she reported that her husband was completely pain free.

Many other of our patients affected by relevant pain, informed us that this disturb regressed completely or nearly completely already within a few days (oral therapy) or within a few hours (intramuscular shots).

I hope this helps.

Best regards

-Marco

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Thank you both for this answer! I will make this question 31 on the FAQ page!

Art

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Art

I had terrible pain ,pins and needles before starting Thiamine but after few months from taking Thiamine almost all my pain disappeared.

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Kia,

Thank you for mentioning this!

Where were you having this "pins and needles feelings" and how long after starting thiamine did they go away?

Art

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Art

Pins and needles , pain were in my left arm,hand, left leg and foot and left side of my hip. They reduced whithin few months but still had them till Jan this year. I would say it took 7 months from starting Thiamine till the time they totally disappeared.

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Good information to add to this FAQ page! If someone else has a similar issue, now they will have a better idea of why it might have gone away.

Thank you!

Art

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Art

May I ask to add this to the FAQ page please;

It is Marco and Dr Costantini’s comments about Thiamine and Dyskinesia

healthunlocked.com/parkinso...

Many thanks

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Marco,

Is there a "best time" to reach either of you by email, or is it just a matter of submit a question and you will answer when able? Thank you!

Art

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Dear Art,

Unfortunately there is not such thing as a best time for us right now, I am very busy with my other engagements and try to sit down with Dr. Costantini regularly before replying to you or anyone else, however we cannot always manage to do that swiftly. I therefore would call upon your understanding and ask you to bare with us because we will try to respond ASAP to all questions but cannot tell when that asap will be.

I am out of the country again tomorrow and the rest of June is very busy but we will try to get all messages together towards the second part of the week and reply before the weekend. Send your question whenever though!

Thank you

Best

-Marco

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Dear Dr. Costantini and Dr. Colangeli,

I have a few questions I would like to ask.

1. It seems that your preference is for most people to stop use of all supplements in order to start thiamine therapy and I assume this is so that you can have the clearest picture of exactly how these patients are responding to the thiamine therapy itself and in turn this helps you to determine if dose adjustments are needed? You are also trying to make sure that the other supplements are not clouding the effect of thiamine therapy?

If this is correct, at what point can a patient start to add back supplements they were already taking as part of their daily regimen?

2. If thiamine usage late in the day does not keep me awake at night, is it okay to take it before dinner if I miss my lunchtime dose? Will taking the second dose before dinner help to keep a steady state of thiamine in my system?

3. You mention the "pull test" on occassion, can you you explain this in detail or link to a video that describes this procedure?

4. A forum member, st8farm, asked if you have an interest in patients who have a DAT scan for later comparison?

5. Can thiamine cause hypertension in some people?

6. What is the longest period of time that you have treated a PWP with thiamine?

Thank you both very much!

Art

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Dear Art and all,

Thank you again for your patience with these questions. I have been very busy over the past weeks and could not get a chance to consult with Dr. Costantini before replying to this tread. Please find the answers below:

1. It seems that your preference is for most people to stop use of all supplements in order to start thiamine therapy and I assume this is so that you can have the clearest picture of exactly how these patients are responding to the thiamine therapy itself and in turn this helps you to determine if dose adjustments are needed? You are also trying to make sure that the other supplements are not clouding the effect of thiamine therapy?

If this is correct, at what point can a patient start to add back supplements they were already taking as part of their daily regimen?

A: That is correct. We usually prefer to have a glimpse of how the high dose thiamine performs alone before evaluating the need for further supplements to aid its absorption (e.g. magnesium, etc.). Usually, after 3 months from the beginning of the therapy, we reach the point where the thiamine protocol has been correctly tailored to the needs of the patients and in case the regression of the symptoms still leaves room for improvement, we add other supplements and observe possible changes for further 3 months. Often times the action of thiamine alone is satisfactory for the patients and rarely we need to add other supplements, which are in any case in small doses.

2. If thiamine usage late in the day does not keep me awake at night, is it okay to take it before dinner if I miss my lunchtime dose? Will taking the second dose before dinner help to keep a steady state of thiamine in my system?

A: If the use of thiamine does not lead to difficulties in falling asleep or sleepless night there is no reason why a patient should not take before dinner. As for the stability of dose in the system we cannot express an educated opinion since the testing of thiamine levels in the blood is an uncommon test and perform it at different times of the day would require (once again...) a dedicated study which we have not been able to carry out with our resources to date.

3. You mention the "pull test" on occassion, can you you explain this in detail or link to a video that describes this procedure?

A: The pull test is a common component of the UPDRS scale for PD. At this link (https://www.sralab.org/rehabilitation-measures/retropulsive-pull-test) you can find an explanation of what that is and how it should be performed and evaluated by the neurologist.

4. A forum member, st8farm, asked if you have an interest in patients who have a DAT scan for later comparison?

A: The DAT scans are a useful system to compare the progression of the disease and the possible actions of the high dose thiamine therapy. Especially if the patients have recent DAT scans and will be willing to compare the results with a future scan performed in 5 years (this seems to be the minimum time window to make reliable considerations) from the beginning of the therapy, that would definitely be interesting.

5. Can thiamine cause hypertension in some people?

A: It could, and if that does happen the doctor should operate either on reducing the thiamine dosage or adjusting the anti-hypertension therapy of the patient.

6. What is the longest period of time that you have treated a PWP with thiamine?

A: Five and a half years.

I hope the answers above are useful.

Thank you

Best regards

-Marco and Antonio

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Thank you very much, Dr. Colangeli and Dr. Costantini! I will add those 6 questions with your answers to the FAQ list!

Art

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Revised the link. Please scroll down to get to the Marco’s reply to me

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Dear Art,

Just saw these. I apologize, this month is crazy with work deadlines but I will get to consult with Dr Costantini over the next days and will get back at your all with the answers to the five questions above by the end of this week or during this weekend.

Thank you for your understanding

Best regards

-Marco

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Many thanks

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Sounds promising. We live in Scotland,my husband was diagnosed about 4mnths ago, altho he did appear with symptoms over a year ago but neurologist told us we will be releived to know he did not have Parkinsons at that time, how wrong can they be, we do now have a charming neurologist and a lovely Parkinson's nurse. I would very much like to contact Dr Constantini and would be most grateful if someone could provide me with an email address please. My husband is taking 3 Ropinirole in the morning along with 1Madopar 50/12.5 with breakfast lunch and dinner also 100/25 prolonged release Madopar at bedtime he also takes 1 drop cpd oil in the morning and 2 drops in bedtime. He has gone from taking no medication and being very healthy to this and feels a bit down about it all, as I would imagine so do a lot of PWP, and other illnesses.I read as much as I can on the internet about this condition and find it so depressing and I am scared for him. So would love to try anything that might help. Sorry for the long post but so grateful for these posts. Thanks in advance. Doreen Stewart

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Doreen,

The email address is in the title of this post.

Art

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Oops sorry, thank you, minds in a middle sometimes. Thanks for the wick response

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Doreen,

Here is a link to a post where people are discussing their results using the thiamine protocol that may help to perk your husband up!

healthunlocked.com/parkinso...

Art

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I assure you it is not promising, it is proven. My testimonial, read my Profile please.

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Ropinirole is a dopamine agonist which can cause serious adverse effects. This class of medication should only be prescribed after the patient has maxed out on levodopa, Madopar in this case. You can private message me to discuss further rather than lengthen this already long page.

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Thankyou for you time and information

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Superb thanks to everyone involved I am on day 3 of the treatment will keep people posted

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Thank you so much to you and Dr Constantini for all the preparation and effort that went into compiling these questions and answers. Bless you both.

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Thank you for this superb questions . I have emailed with Dr Constantini and will start my Thiamine use in a weeks time. I will keep posting on its effects and again thanks to Royprop who first bought thiamine to my attention.

Thanks to this site I am keeping well.😃👍

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I thank Art for his terrific questions and the wonderful Dr for his great answers ! I realize it’s extremely helpful for those recently diagnosed and Roy whose had Pd I believe for 6 yrs please correct me if I’m wrong. Are there others who have had it 5 yrs Or more that are willing to share what success they have had . And at what dosage? Thanks

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Dx 2012

Go to my profile. Regarding B1, thiamin HCI, read my posts and replies. Click Follow. Learn of my experience over the last year. Discover my wellness as direct result of first choosing hi dose allithiamine then later thiamin HCI.

I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.

I wish you will share.

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I will share of course! I am one of your followers and have read your posts and updates to your bio. I thank you too Roy because you are the first one on HU to share about Dr. C and his amazing discovery of thiamine HCL for treating PD. I need to update my own profile since it doesn’t properly explain my story . My first sign that something wasn’t quite right was 6 1/2 yrs ago. I don’t have tremors mainly stiffness, rigidity. The first neuro said it was stress. The second one sometime later misdiagnosed me as dopamine responsive dystonia, dystonia in my foot was one of my first symptoms. I started Sinemet for it treats this condition as well, as my symptoms progressed they eventually diagnosed me with PD. I also have dyskinesia sometimes worse than others that began almost from the beginning of taking Sinemet. Finding HU was truly life-changing this community has taught me more than I’ve learned from any Dr. , I’ve bought many supplements most haven’t been successful for me. I’ve stopped taking all supplements except mannitol(for about 5-6 months) which I think is helpful, greater sense of smell and I like the idea of something unsticking the alpha nucleons (sorry for the unscientific language ). I take magnesium with thiamine HCL but wish I could get the Italian kind. I don’t take bcomplex since I have mthfr and don’t want the folic acid. I also add b-12., and vitamin D. My thoughts so far are that it is helping, i started extremely slow since I heard although rare some allergic reactions have been reported. For about 5-6 weeks I have been taking it consistently twice a day. What I am inconsistent about is the amount. It seems so far to help my movement; at night my hands feel less stiff, easier to pull up the covers etc. my off times seem a little shorter, my handwriting looks not perfect but more like my own. My medicine dosage I’m trying to work out because I seem to need less but still get dyskinesia since I haven’t quite figured the right dose. I’m very happy to have any improvement!! I exercise too and try to eat right. I did write to dr C and he kindly replied. I had worked my way up to 3 g and asked about 4g. He said I could but then I see where some are taking less than I was and weighed more, im 113 pounds right now. So I then started taking 2 grams a day. Then the next day I’ll think maybe 3 was better and up it . Ugh I’m my own worst enemy. I need to decide and stick to it. I know it can take time and I’m thankful in the meantime. Stress can really effect my symptoms negatively and also muddies the water in determining dose of thiamine for me. I think I’m a bit worse than some so then I think maybe for me I should take 4g. But I think for now I should stick to 2grams and go up from there . I’m not as patient as I should be, having 7 kids will do that to you! Lol sorry this is long but I’m open to suggestions and thank you all for your friendship and advice , you all make my life with PD a better one!!💕

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"I take magnesium with thiamine HCL but wish I could get the Italian kind.." There is in USA mkt one that appears close to the Italian one.

Vitacost Magnesium Ultra, 300mg

mag oxide, mag amino acid chelate, mag malate, mag taurinate

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RpyProp

These magnesium salts you mentioned have lowest rate of absorption as far as I have studied Magnesium and consultations with Dr Costantini and other medical professionals.

The Italian version (AXIMAGNESIO) has these magnesium salts;

magnesium salts fatty acids; magnesium citrate, magnesium gluconate, magnesium pidolate, magnesium bisglycinate;

PLUS

magnesium malate, magnesium succinate, magnesium chloride, magnesium sucrosomial® – Ultramag® (magnesium oxide)

PLUS

A very very low dose of B6 (1mg B6 in each tablets of magnesium) . B6 is necessary for the absorption of Magnesium and Magnesium is necessary for the absorption of Thiamine.

pegaso.eu/en/store/nutritio...

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I'm still confused on the dose of magnesium to be taken. While we are always specific about the exact grams/day of thiamine and which time of the day and with or without food, I've not seen any such info on magnesium

What dose (in grams or tablets) of magnesium should be taken?

Should it be taken in parallel with thiamine?

If not how?

Apologies for the pressure I put on you, more so because you are not Dr C so you may not know the answers

But I ask now because this is a sub-topic post within a thread on a different but related topic

Perhaps I should copy this questions to @easily also

Many thanks to you

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Thank you!

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Hi ConnieD

Here is the Italian magnesium

pegaso.eu/en/store/nutritio...

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Thank you !

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Will they send it to the States Kia?

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Hi Connie,

As I wrote to you earlier, I am now more convinced than before that thiamine really helps to repair damaged neurons and that takes considerable time. Even 2g is effective and overdosing could cause added stress and slow healing. Moreover I am convinced that not only dopamine producing neurons are affected but also neurons further down the chain of command that use dopamine which are what cause the range of symptoms of Parkinson's. So I feel that time of treatment is more important than detailed dosing. You must be patient.

Albert

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Thank you Albert I really appreciate your input! You and others on this forum have an understanding of the science behind all this so I am very grateful for the advice! I agree patience on my part is needed and 2 grams should be enough for now. I’d like to avoid the Pd worsening and having to stop the thiamine due to taking too much. I’ve been thinking it’s taken a long time to get to this point, although I’d love to wake up “normal” again but realize I must be realistic and patient with any healing. Thank you again for your great advice and sharing your knowledge! Connie D.

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Hi again,

The longer you've had PD, the greater the number and TYPE of neurons could be damaged. A higher dose of thiamine may not speed up healing. But ALL the neurons along any chain of command may need to be healed before symptoms recede. This is why it may take longer in cases like yours.

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That makes a lot of sense! Thank you very much Albert!

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Thank you for the excellent help you have provided us! So many of us are benefiting and grateful! Blessing and love to all as we heal.

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Thank you For the info I will talk to my doctor

I have starter twitching facial muscles

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Thank you for the information. I’ve contacted Dr. C but have not gotten a recommended dose from him yet. How long does it usually take?

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I think because of the increasing interest from this forum, he may have gotten temporarily inundated answering the many questions regarding the thiamine protocol. As Dr. Colangeli said, they will make every effort to answer all inquiries regarding thiamine. Hopefully this FAQ page will help to lessen some of those inquiries and allow for faster replies.

Generally, the time range for a reply has been running at about one day to one week until recently.

Art

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Okay. Thank you for letting me know. I, too, appreciate the folks on this forum. A wealth of information!

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A copy of my post to Kia17 perhaps you can add to the questions to Dr C. Many thanks

------------------

I'm still confused on the dose of magnesium to be taken. While we are always specific about the exact grams/day of thiamine and which time of the day and with or without food, I've not seen any such info on magnesium

What dose (in grams or tablets) of magnesium should be taken?

Should it be taken in parallel with thiamine?

If not how?

Apologies for the pressure I put on you, more so because you are not Dr C so you may not know the answers

But I ask now because this is a sub-topic post within a thread on a different but related topic

Perhaps I should copy this to @easily also

Many thanks to you

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As far as I know, Doctor Costantini only adds magnesium to the thiamine if he deems it necessary after you have begun using thiamine and I think part of the reason is because he wants to see how you react to thiamine alone with a good initial run in period. I believe Kia took the mag citrate as a personal decision and the Aximagnesio based on Dr. Costantini's recommendation. On the other hand he did not recommend magnesium to Gio, and I suspect that may be a case of , if it ain't broke , don't fix it, but Gio also decided to add magnesium. In any case you can always ask him about magnesium and then add his response to the FAQ page!

Art

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I forgot to mention that there is another forum that may soon be vying for Dr Costantini's attention and that may slow things down considerably in terms of response time to email inquiries from this forum.

Art

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Costantini sooner or later responds to all the patients of PD ,I am sure, because he worked their whole life in their rehabilitation in the clinic and not behind a desk and he knows well their great suffering and wants to avoid. His life resume speaks for itself, and a life lived so, no one can make it become "de-lived" in words.

GioCas

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I completely agree, Gio, but there are only 24 hours in a day. You can see by the delay in replies to emails and from what Dr. Colangeli said earlier, they are already stretched thin. Another forum to deal with will not lighten that load.

Art

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I agree as long as him can do it I am convinced, but this is not the point here

Gio

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Thanks so much for the FAQ! Has Dr. Costantini suggested the protocol for reducing Parkinson's medications while participating in the B1 thiamine therapy?

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Any dose adjustment is normally done at the beginning of thiamine treatment and again once you report back to Dr. Costantini after being on treatment for awhile. I highly recommend you read the following post to get the information you will need to give to Dr. Costantini and to get a general idea of the thiamine treatment. The second link is to the results people are getting using thiamine.

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

Art

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I wrote to Dr. Costantini today to ask him if it would be a possibility that he could reply to """common questions""" within the confines of this FAQ page. We would write our questions on this page at the very bottom of the post and he can check it regularly and answer the question when he sees it. All questions would be added to the very bottom of the entire post to make it easy for Dr. Costantini to find it quickly. The question and reply would then be added to the bottom of the FAQ list allowing anyone to just check the list to see if it answers your specific question. Dr. Costantini has already replied and thinks it may be a good way to go if it is doable by the forum itself, so he is in agreement!

Obviouslly this will not include """""case specific""""" questions as those will still require email communication directly with Dr. Costantini. Case specific questions posted to this FAQ page will either be ignored or referred to email correspondence .

I have also written to an administrator here at HU , Cpt Helen, as suggested by RoyProp, to see if there is a practical way to " pin" the post to a front page to make it very convenient to find with just a single click or two. I am awaiting her reply. Once she lets me know if HU can do it , this FAQ page may be a new and convenient way to get answers to the most common thiamine questions directly from Dr. Costantini!

Art

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Art

You are a star!

Many thanks

Kia

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art

can you please address my query on pull test done by Dr.C

viz.- in pull test - if you are out of balance - you need to increase dose

- if stable - right dose but what

- IF OVER DOSED..................HOW WILL YOU RESPOND TO PULL, ESPECIALLY, AS OVER DOSE MAY WORSEN SYMPTOMS

SO,COULD IT BE A POSSIBILITY THAT YOU ARE OVERDOSED BUT IN PULL TEST YOU ARE OUT OF BALANCE INDICATING NEED FOR DOSE ENHANCEMENT

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Too much or too little thiamine will not maximize balance. Dr Costantini uses the pull test as one tool to help zero in on the most effective dose. Best balance will be achieved with the best dose for the individual and he determines this by patient feedback after an initial run in period at the dose he starts you at. If symptoms improve initially and then worsen shortly after, then the dose is likely too high even though it may have been appropriate when you started. If no improvement in symptoms is seen from the initial dose, then the dose is likely too low and he will adjust accordingly. If at anytime during thiamine therapy, symptoms worsen, he will usually try adjusting the dose downward or temporarily discontinue the dose until symptoms improve and then restart at a new reduced dose. Much has to do with your condition when you start and I'm sure disease severity and duration along with current meds and doses play into your initial dose rate as determined by Dr. Costantini.

Art

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kaylan,

My understanding is that the correct dose will produce the best balance. If you are taking too much or too little thiamine, you will not achieve the best balance. The Pull Test helps to determine when you have achieved your best balance and this in turn lets you know that you are currently at the optimal dose of thiamine. I hope that answers your question!

Art

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Art yes pl & thanks for detailed feedback

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Thank you a lot.

I have been using Levodopa for one and half year. Can I begin using thiamine?

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Yes

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Art, my husband's testosterone is low and doctor prescribed hormone therapy. He hasn't started the therapy yet. Shall he postpone until we start B1 injections therapy?

Also, Dr. C suggested that my husband stay on his current vitamins protocol. I am a little confused.

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Does Dr. Costantini address whether Sinemet and thiamine can be taken together or if not how long between the two?

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Together is fine as thiamine is compatible with Sinemet.

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I have to start in the morning because as per the Q&A's (#13) might affect my sleep.

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Kia,

Dr. Costantini sent the reply last night to your recent question about how he determines whether he will use oral dosing or intramuscular dosing of thiamine in his patients. It took a little longer to get the reply back because he wanted to make sure that it was translated correctly due to the length of the reply, so he had Dr. Colangeli translate what he wrote out.

Your question now appears as question and answer # 42 in the above list of 42 FAQs!

Art

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Thanks to you both dear Art and Dr Costantini for the Q42.

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a great useful and enlightening post, I just read it again 👍Gio

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how do i contact dr costantini

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jimo2017,

The email address is in the title of this post.

You should read the following before contacting Dr. Costantini:

healthunlocked.com/parkinso...

Art

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Just wanted to let the forum members know that I submitted 6 new questions that I heard members ask over the past two months or thought that they might be questions that members might have. Dr. Costantini has kindly answered those questions and they are now posted here as questions and answers numbers 43 ~ 48. I hope you find them helpful!

Art

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Hello forum members!

I just wanted to let the members know that there is a new Q&A added to the FAQ page as number 49. I feel this particular question is very important for any PWP who is considering testing B-1, to be sure and read and even for those currently testing B-1!

Apparently there are some members of the forum who are considering testing B-1, but they have read how, many people who are currently testing B-1 have experienced the highs and lows of testing thiamine where symptoms can get better and then they can get worse. In some people it is possible for symptoms to worsen even beyond the point of before they started B-1! The worry is that what if the symptoms get worse and then even if I stop taking thiamine, these worsened symptoms do not improve?

I know, this is a very scary thought and a legitimate concern and that is why I asked Dr. Costantini to address this issue and you can read his reply in Q&A 49 above.

Art

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Although I posted question and answer 49 earlier today and it was an important one for people who are about to start testing thiamine, I realized that there was another very important question that needed to be asked and answered, so it is now a 50 FAQ page! This last question is very important for anyone who is currently testing thiamine / B-1!

Art

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Just in case anyone missed it, I added two more questions to the thiamine FAQ page yesterday bringing the number of FAQs to 50. One question is important for anyone thinking of testing thiamine and the other one is important for anyone already testing thiamine.

Btw, I think it is worth mentioning that Dr. Costantini requested a copy of this FAQ page for another Parkinson's forum that he is going to start working with. I thought he was busy enough already, but this may take him to a whole new level of busy! I think he will still continue the email consults, but waiting times may be increased temporarily as they were, shortly after this forum started on his protocol. There is that initial increased demand of his time as he answers all the newby questions and fears that many people starting B-1 might have. Hopefully that FAQ page will spare him many of the repeat questions that he had to do for this forum!

Art

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Art, word spreads fast!! Hope he will have time to evaluate my husband's new, increased dosage, protocol results. :)

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Despe,

I'm sure it won't be a problem and it will take a moment for the other forum to get their thiamine information setup anyway. Yes, the word is definitely spreading and that is a very good thing for many PWPs who may not yet be aware of Dr. Costantini's B-1 protocol! 😊

Art

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I would like to let the forum members know that I have added a question and answer to the thiamine FAQ page. It is number 51 and should be interesting and important to anyone who is currently taking B-1! Dr. Costantini answered it last night.

park_bear has mentioned on several occasions that dopamine agonists come with the potential for some serious and definitely unwanted side effects. My understanding of dopamine agonists is that when you are on a levadopa product like Sinemet, as time goes by, you will likely have to keep increasing the dose in order to maintain the effect and eventually Sinemet alone may no longer be able to do the job and this is where the dopamine agonists are often initiated if not sooner!

I had been thinking about that scenario in the back of my mind since park_bear first mentioned it and this past weekend it sort of drifted into my forward thinking. I was thinking that Dr. Costantini has maintained that his B-1 patients have not progressed as long as they have stayed on thiamine, at least to the best of his ability to test for progression. I was thinking, if he is correct and there is no disease progression, then there may possibly be no need for increased Sinemet usage and then ultimately no need for a use of the dopamine agonists? Wouldn't that be great?

So I posed the question to him on Sunday as to whether his B-1 patients have ever had to increase their levodopa usage once they have established their correct dose, gotten very good symptom relief and shown a very good response to the "pull test"? This was his answer:

'Once a person has established the correct dose of thiamine / B-1 and is stable, including a good response to the Push Test and a good reduction of symptoms, this person will never need to increase their other PD medications such as Levodopa / Sinemet or other drugs.'

I further asked if the patient does not need to increase their levadopa dose, is there any possiblity that they could lower their current levadopa dose? This was his answer:

There is a possibility that these standard drugs may be reduced especially if they have side effects.

I don't know how others feel about this and I am already more than impressed with his

B-1 protocol, but I thought this was awesome!

Art

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I just want to let the members know that there is a new FAQ question posted. This is question #52 and is different from all previous questions which have either been generated by you or me. The current question was generated and answered by Dr. Costantini and is directed at people who have been on thiamine / B-1 long enough to have found their correct dose and are now stable. I think he sent this because as you can see from the, "who is taking thiamine page", some members are about to or have reached that point and so this is likely to become relevant as time goes by for people on the protocol! Again, it is Q&A #52 above.

Art

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I just want to let the forum members know that Dr. Costantini has added Q&A number 53 to the B-1 FAQ page. This question concerns whether B-1 can be used as a stand alone treatment. I submitted this question because of forum inquiries on the subject. Dr. Costantini's answer is quite interesting and can be viewed by scrolling upward to #53!

Art

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Just want to let the forum know that there is a new question and answer added to the B-1 FAQ page as question and answer #54. Members on the forum have been asking if Dr Costantini has an opinion on the use of mucuna pruriens in place of levodopa/carbidopa with B-1.

Art

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Thank you for gathering and posting all of this information--so many of my questions have been answered. It is the best and most thorough overview on this subject I have ever read. Truly appreciate your sharing this!

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jesidog,

You're welcome and I am glad the Thiamine FAQ page answered so many of your questions regarding the B-1 protocol. That was the intent for that post, to answer as many questions about the protocol as possible. For more answers to a few common protocol questions, you may find this other post useful as well :

healthunlocked.com/parkinso...

Art

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I just want to let the forum members know that I added a FAQ #55 above. This question was from bassofspades to Dr. C. The question was about muscle tension, back and leg pain as it applies to the B-1 protocol. This is an important question and answer as I have heard it mentioned at least twice on the forum.

Thank you for posting it, bass!

Art

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Art, guess part of my husband's knee ache and stiff hamstrings is attributed to excess B1. Dr. C. has suggested to up the dose from 200mg a week to 300mg. We will try the new dose and if his symptoms are worsened, then it is definitely because of excessive B1.

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Despe,

That is probably a good course of action because if the B-1 is the cause, that is reversible, but since that was straight from Dr. C, I would be sure to bring it up in your next correspondence with him!

Art

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We mentioned it in our last communication. He is aware of it, at least I believe so.

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Does your husband take Thiamine injection?

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Yes, he started 200mg X week, then upped to 250mg x week, then 200mg a week, and the newest recommendation from Dr. C. is 300mg a week.

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Has he noticed any improvements? motor or non-motor symptoms?

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After the initial injection when he called me and told me he felt NORMAL again, I have seen minor improvements, mostly energy wise. His tremor is infrequent and intermittent, but he always had infrequent and intermittent tremors.

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The most debilitating symptom is frequent urination during the night which I attribute to a lot of reasons. PD itself, drinking water until he goes to bed, MP (diuretic), enlarged prostate due to age, etc. Urologist couldn't help him either although he really tried, knowing first hand about PD since his wife is a PwD. :(

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Thank you Despe

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Thank you, easilly and Dr Constantini and Dr Colangeli for this excellent summary on High-Dose Thiamine/B1.

So very helpful!

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You might also like the following post which covers pretty much everything about the high dose thiamine (HDT) protocol if you haven't already read it.

healthunlocked.com/parkinso...

Art

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Sorry this may sound like a silly question but I’m about to do the pull video with my sister prior to commencing B1 protocol. Could someone who has already undertaken these videos - Do you inform the patient of what is going to happen during the test or not? I.e that they are going to be pulled backwards.

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Yes let them know. And please don’t let fall.

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Thank you I thought you must/should but also didn’t want to do it wrong.

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Yes, it must be explained, with the reassurance that the person can not fall because the person who executes it will be careful behind her to support if he loses his balance. And so it must be. Tape well the feet and also the whole movement of the patient.

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Please make sure to perform the test during "on time" as opposed to "off time".

Art

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I just want to let the forum members know that I have added FAQ #56 to this page. Today's FAQ is about the use of HDT for other neurological disorders like MSA. Dr . Costantini's reply is interesting!

Art

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I wonder if the fact that HDT is less effective in other neurological disorders like MSA, adds anything to the idea that it is not a placebo effect? It seems like if it was a placebo effect then it would have similar effects to what it has shown in PWPs. In any case, it is great to know that it may be beneficial for people with MSA too!

Art

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I would like to let the forum members know that I added a question yesterday and another question today to The HDT FAQ page in questions 56 & 57 above. The first question concerns MSA and the second question concerns HDT and rash and a couple of potential work arounds. Both questions were answered directly by Dr. Costantini.

Art

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Hi. My dad is with parkinson. Do you have any contact of the Dr.?

Thanks!

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Yes, here is a link that will answer all questions you may have about Dr. Costantini's HDT

protocol including information about how to contact the doctor, reports of the results that people on this forum are getting from either using or testing B-1. There are also links to the FAQ page as well as a listing of specific results that members have gotten and a lot more!

healthunlocked.com/parkinso...

Good luck!

Art

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