I have been taking B1 since mid September but I have not found my magic dose yet . Dr. C has been working on my dosage. However, i am wondering if anyone has achieved an optional level while taking a multivitamin or anyother nutritional supplements?
My balance and freezing of gait are beginning to take its toll on me. I have not taken any supplements in almost 3 months. I was trying to figure out if my lack of vitamins was holding up my progress.
ALSO, I saw my doctor last week and he prescribed amantadine. He thought it could help with my freezing of gait. Not sure if i should wait to try it ??
Any thoughts would greatly be appreciated.
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moparkie715
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Great question. I take a whole laundry list of supplements and have done so continuously even while establishing my vitamin B1 dose. That includes a B complex without folate, many other vitamins and minerals plus fish oil and turmeric. The ones that I have reason to believe specifically help with Parkinson's are mannitol and vinpocetine. However, if you are short any essential vitamin it seems to me it could adversely affect your Parkinson's. In particular, patients taking levodopa medication have increased demand for vitamin B6, although it should be taken at a different time than the medication.
I am not familiar with what meds you are currently on, but it sounds like at least C/L. Can you tell if you have gotten any benefit or worsening of symptoms since you started HDT?
What dose are you at right now and How often are you contacting Dr. C? The thing is, Dr. C is first and foremost a neurologist and he just happens to also have the most experience with B-1 also. Have you considered allowing him to add new meds or adjusting current meds?
Another consideration is that it looks like you are about 6~7 weeks in to HDT, but some people have not seen any benefits for months or only minimal benefit initially followed by very gradual improvement over months.
Lastly, if you have any questions about HDT and how you are doing on it, please don't hesitate to contact Dr. C! He will answer any questions you have. His preference is for you to not add supplements back in until you have found your correct dose, but if you are having problems that you think are related to HDT, you should let him know. If you don't tell him, he might assume there is no problem.
I do not have PD. I am the mom of a wonderful son who died at age 55 of PSP....first dx with PD....for three years.
I am 78 years old, started having aches and some balance challenges. I started the B1 on August 12th. I started with 100mg in the morn and lunch. On Nov 11th, I increased it to 200mg at breakfast and lunch. On Nov 26th I increased it to 300mg at breakfast and lunch. Today, Dec 4th, I seem to have NO aches or balance challenges. If I continue feeling this good I will not increase. I like to start my supplements slowly to allow my body to adjust.
I never stopped any of my other supplements or Pharma's (statin and thyroxine). I did not consult with Dr C as I feel he has his hands full with PD patients, but if it helped all of you, I was pretty sure I would get positive results.
RoyProp, I don't feel that would be fair to take up his time. I would not hesitate If I had ParsonISM, but thank you for the encouragement. I just thought it might be helpful to hear from one who is a senior citizen starting B1.
Echo easily's reply below about months to see any major improvement. Constipation cleared the first two weeks.
Micrographia cleared after several months, as many as nine. I notice my writing is 90% improved from evidence me writing Christmas cards today.
I worked with Dr C for months on my B1 dose, started in July, but it never did provide any benefit or improvement. I'm still taking the dose Dr C recommended in hopes that it will change.
My husband started B1 with Dr C's advice in mid-July. Dr C told me to have him stop his multi and additional B6. I was OK with this for a short time. I worked with Dr C through September (no real improvement) when we decided to work with a functional medicine/holistic psychiatrist trained through William Walsh, PhD. Walsh is known for working more with "psychiatric" patients but has added Alzheimer's and Parkinson's (in the last few years) into the mix. There is often a copper/zinc imbalance, which we found out through my husband's lab work. We also found out some other troubling things which he has started to work on. Once he's established with what the psychiatrist has him on, I hope to start him up on the B1 because I do believe that will help in the long term. She did not object to him taking the B1. She does have him on 100 mg of B6 in the AM as well as B12 (adenysal) but NO folate or multi. In Walsh's book Nutrient Power he has a table Neurotransmitter-Nutrient Relationships that shows that tyrosine, phenylalanine, B1, B6, SAM-e and methione increase dopamine activity. She is not keen for him to be on the Sinemet based on comments from a Walsh support group she is in. My husband has had no reduction in tremors (a major problem for him) since he started the Sinemet a year ago and that is with increasing dosages. Actually, he's gotten worse since starting it. Trying to find the answer.
Will do. This is definitely a process and not a short-term one. He has tried many things that have helped other people: 2 functional medicine doctors who were specifically targeting his PD, 3 doctors who worked with him on the amino acid therapy, taking Restore Gold for 4 months, and even an herbalist who said he had never had any PD patient not get some relief from what he did. He was put on Sinemet when he fell (didn't hurt himself) and wound up in hospital a year ago. Even increasing his dosages over the course of the year has not given him ANY relief. Clearly, something is wrong. His main problems are extreme fatigue and tremors. He doesn't have much of a life right now.
I can relate to extreme fatigue and tremor. I did add a tad of salt to my diet, and drink more water, in addition to cutting down on the number days I take supplements. This helps a bit with my fatigue. I walk, but never feel I get the benefit one would expect from it. Currently adjusting my Mucuna for tremors.
Husband got headaches within 2-3 weeks of starting the iboga. Supplier advised to stop for a couple of weeks. Had just ordered a larger quantity. Took 8 weeks to get the new stuff so husband was off of iboga for almost 3 months. During that time decided that having to wait for this long to get it was not viable. His headaches eventually went away but it took a while.
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