Have any of you heard of the high-dose B-1/Thiamine treatment that people are talking about on the Parkinson's Board--there's a mention that the doctor directing it, Dr. Constantini in Italy has an even higher-dose protocol for treating CBD (scroll down--if my link works!--to #30).
I'm grasping at straws here. We see our neurologist tomorrow. He's let us do two months of carbidopa-levodopa trial in increasing doses--and I notice improvement in things like facial expression and blinking, but my husband's non-working hand still shows no improvement (can't shake it or move it back and forth). The doctor said he needed to see at least 70% improvement to consider the levodopa trial as successful, in which case we could say it was Parkinson's and not CBD. He also said that even if the levodopa trial worked, he liked to start people on Dopamine Agonists (ropinirole, pramipexole etc.) first instead and save the levodopa for later. He didn't seem to think that exercise was a big helper with CBD (which concerns me). The other thing going on is that my husband is incredibly tired, taking two naps a day! Hard to know if it's from the levodopa or the disease.
My thought is to that it would make the most sense to try the B1/thiamine high-dose treatment, because, what the heck, it's fairly low risk, and to push exercise while it's possible.
Forgive this long post! If any of you have any input to any of this as we see the neuro tomorrow morning, please send it! Like everyone else here, I feel overwhelmed.
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LostinHeadSpace
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I hear you, about trialling the Thiamine, even if Neuro aren't too hot on it....Anything we try (with good reason) at least may give a feeling of pro-activity and hope to our loved ones. For a while at least. I'll take "for a while" - it's better than no hope!
I'm sorry I can't add anything to the discussion excepting that for any Parkinson's related disorders it must surely be worth a shot. I have seen a few clinical research papers indicating that it is efficacious. So for CBD and the basal ganglia and perhaps for PSP parkinson's type.
Thank you both! Maybe we can be the thiamine guinea pig for the CBD group.
I'm fully aware that this is flailing against the diagnosis, but why not try, right? I feel like a textbook case of the stages of facing things like this.
Hi. Nigel has CBD. He reacted badly to Levodopa as it sent him into a 3 day hallucination so the consultant took hime off it. However he is on Vit B strong compound 2 three times daily and Thiamine 100mg three times daily. He has been on them both from the beginning so I cannot say if it has improved things or not but he does appear to be fairly stable and not regressing nearly as quickly as he initially did and his 'alien leg' does behave itself better than it did at first unless he has an infection.. Sorry I cannot help more but like others say - it is worth trying anything and the link certainly appeared to have some positive results. Good luck tomorrow. Love Ali B x
The neuro said that he didn't object to our trying the B1/thiamine HCL.
We had a confusing result at the neurologist: my husband looked much better overall on the high trial dose of levodopa (the doctor's first comment when he walked in the room and saw how un-stiff my husband looked, was "You're better!") But the hand motion is not improved, he commented on that. He said that the speed of the disease progress is atypical, but that he couldn't exactly call it CBD or anything else until more defining characteristics presented themselves.
We have to decide between levodopa and a dopamine agonist (because with young onset, there are more years for dyskensias).
Feeling a bit overwhelmed. Though we've got one kid with a broken knee and the other just today came down with a raging case of hand, foot, and mouth.
Anyway, if we see improvement with the thiamine, we'll let you know.
Very interesting and would be grateful to hear if the thiamine has any affect. I will ask our neurologist next time.
Ruth (who has early / mid CBD) found levodopa / dopamine agonist made no difference and may well have increased the dystonia pain in her foot (that was back in October 2016). But exercise and yoga are a great benefit and the only thing slowing this disease down - so stick with that!
I wrote directly to the doctor in Italy who has published on the use of Thiamine HCL (the doctor mentioned in about every other post on the Parkinson's Board lately, Dr. Constantini). He wrote back right away with the dosage for CBD for my husband (who is 170 pounds, by the way, since that affects dosage). I'll copy his whole answer below. In the meantime, we're searching for places to get the vials of injectable B1 he recommends.
He writes: "I would start with a vial therapy that works very quickly and is independent of intestinal absorption. Subsequently, if we have a good result, after about a month, we will pass to oral therapy with the good results obtained as a reference. Your husband should make an intramuscular ampoule 100 mg of thiamine three times a week (eg a vial im Monday, Wednesday and Friday morning). Read the general instructions. Overdosing problems are valid for normal parkinson and I do not think we will have problems. For the prescription, talk to the family doctor. On the homoempatia site you can also manage them without a prescription. Give me news a week after the first injection.
General informations for the patients
(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 PULL TEST to normality (score 0). The pull test reveals almost always a pathological balance, even in the early stages of the disease. As a rule, if the examinator 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 subject to the pull test is still or almost takes a step backwards."
Hi, have you had a chance to post on what has transpired in the past four months with the B-1's affect on your husband.......also, did you get access to the vials or settle for the pills/powder?
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