Still on crusade to help husband, despite my previous posts and several emotional breakdowns.
So I'm going to compose a letter to email to this Dr. that everyone is raving about. I have a friend that is Italian, so I am going to ask him to translate. I'm just wondering what info I need to send? Back and forth may be hard with a language barrier, so I just want to make sure I give him the details...Do you just describe everything and then he recommends a dosage? We have a nine year history with Parkinsons, do I need to go on and on, or does he just need current meds, age, weight stuff? What kind of dosages are you all on? How high can you go? Read somewhere that a guy was getting great results but got sky high blood pressure.
Your expertise/feedback would be greatly appreciated.
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TheGimba
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Your question "What kind of dosages are you all on? How high can you go?"
See my HU profile. I take 2 grams before breakfast and again 2 grams in afternoon. No more bradykinisia. No more many other symptoms. I have my life and future back. I am saddened when I read of others experience that is not favorable. Their future w/o thiamin is not going to be good. I suspect there is other reason besides vitamin B1 that causes their discomfort.
Regarding tremor and mealtime I am trying to determine when to eat and when to dose. After my five a.m. dose and not having anything on my stomach all night, no tremor. After breakfast tremor returned.
Don’t worry about the translation I email in English and it’s never been an issue, I gave him a brief history how long I’ve been diagnosed, current symptoms and medications. Age, weight, and anything else that’s of concern like the apathy for your husband. He will respond with the dosage and how many times a day and when to update him. Sometimes he requests a video , he’s never asked
me. It seems some figure out the right dose quicker than others. My Pd is harder to treat with b1 due to non tremor type, dyskinesia , and on off periods so I still haven’t found the exact dose for me. So glad you’re giving it a try!! Keep us updated !Best wishes!!🌸
Im the same -non tremor gait affected. Have been trying B1 dose from 1gm up to 3 gm over the last 2 months with only mild success. Have never failed a “pull test”. Tried 4 gms but started to feel jittery. Will persevere, cheers
Higher doses definitely made me feel stiffer and my dyskinesia was becoming severe. I also would become jittery too at high doses and anxious. It appears to me those with the most success are tremor dominant. I’ve never failed the pull test either and just had it done yesterday by my new neurologist .
Based on my experience, I believe that Dr C doesn't want or need all of that history. If you think something should be mentioned, go ahead but I'd keep it brief. Height, weight, age, dx, roughly the severity of PD. I think you should mention HealthUnlocked so that he knows that you've read up on it, so that he doesn't explain more than he needs to.
I stopped almost all of my supplements; kept taking D3, but stopped all other B's. He didn't ask me to, but I'd seen others here mention that he'd asked them to stop supplements, so I did too.
He generally wants us to stay on any prescribed medication, but you might want to list what your husband is taking and ask just to be sure. I remember that issue someone was having with high blood pressure, but I don't think he ever figured out what was causing that. Anyone remember?
I wrote in English - no problems. He messaged back asking me to send a video of me talking and one of the pull test. He sent me a sample video to show what he meant, replied straight away and will speak to me again in 15days when the adjustment on the B1 that he recommended has kicked in
The purpose of using the Deep L translator is to save Dr. Costantini time when he is responding to the many remote email patients everyday.He has hundreds! Yes, he will respond to English inquiries, but then he has to spend the time translating your message, time that he could use to answer other inquiries. He has many remote patients around the world and sometimes he is not able to respond to email inquiries for a day or two or three so anything we can do to help save the doctor time is useful and appreciated!
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