Well, its for real.
"Diminished uptake involving bilateral putamen with slight asymmetrically diminished activity involving the left head of the caudate. Findings are characteristic of parkinsonian syndromes."
Im surprised I feel as good as I do. This looks pretty bad.
May I ask how long you’ve had or known you’ve had Parkinson’s? May I also ask your age and how much progression it says in the datscan? Are you taking Thiamine?
Im age 50, diagnosed 7 years ago as parkinsonism. Yes I take Thiamne. It does not say anything about percentages or progression on the report. All it says is what I put in quotes, nothing else except the technique used.
feel free to ask me anything you want!
I’m so glad you feel great. It might be stupid of me to ask, did you ever get a DatScan before to compare progression? I know I haven’t been here in a really long time but I still get notifications. I’m doing good by the way. Have you hear of Dr. Constantine’s health, is he back?
Hi my good friend ! Your questions aren't stupid!! I don't have a previous scan. I cant say that I feel great, but by the looks of the scan I'm surprised that I don't feel worse than I do! I haven't been in touch with Dr C and have not heard any updates about him. Glad you're doing good!
Hi!!! I hope you always feel good. I was looking at a documentary called Weed the People and contacted Aunt Zelda (if you watch the documentary on Netflix you’ll know who I’m referring to) and they replied:
“Thank you for reaching out to Aunt Zelda's, I am sorry to hear of your diagnosis and hope we can help. In general, most patients we work with use two infused oils, one THC-rich and one CBD-rich, in order to start with low doses of both cannabinoids and increase until achieving effective levels. There are not specific products for specific conditions, and most people need to find the right blend of THC and CBD for their situation. The doses required for Parkinson's are usually less than cancer and you may need 1-50mg THC and 10-200mg CBD per day to potentially address symptoms. Please let me know if you have any further questions.”
My reply:
“Thank you Justin for replying so quickly. I’m curious to know if once the correct dosage treatment is successful, would I need to continue the THC and CBD for the rest of my life? The 10-200CBD a day, how is it spread out throughout the day? I have three children and wonder how my physical and and mental alertness would be affected with he treatment. Are there specific THC and CBD you can direct me to on auntzeldas website?
Thank you for your time.”
His final reply:
“The list of THC and CBD products are on AuntZeldas.org, either the Nighttime/Regular Strength CBD at 10mg/mL or Extra Strength THC and CBD oils at 30mg/mL are suitable products. The doses are usually split up throughout the day. Instructions for how to achieve any specific target doses with any lab-tested product are found at Question 6 of our FAQ. Most people do need to stay on cannabinoids for life, although by using CBD during the day and THC minimally combined with the CBD or alone at night psychoactivity can be minimized.
For more specific advice, we work with a physician and nurse who provide consultations over phone or Skype. They can advise how much THC and CBD should be used per day as an initial target dose, and answer other questions related to the treatment. If interested, you can sign up using the instructions on the bottom of AuntZeldas.org. Please let me know if you have any further questions.”
My point is that I am left wondering how effective and if using THC & CBD oil is a better option than the one Dr. Constantine recommended? He recommended Thiamin 500 once daily along with my Carbidopa. Does anyone or do you know how THC and Cbd has helped people with Parkinson’s?
Hi procaffeinator.In my experience of thiamine after four years of continuous use I have no side effects that I am aware of. This could make a difference.
That’s great news!! I am so glad to know that. Tomorrow I’ll be 41 and I feel great taking 500mg of Thiamine and three 25 mg of Carbidopa a throughout the day. My kids drive me nuts and make me feel like I’m 87. Im kidding. No I’m not. Yes im kidding, mostly.
Do you mean 25/100 carbidopa/levodopa?
Yes
I tried cbd oil. It was the kind that was supposed to have no thc in it. I could lose my job if i test positive for thc. The clerk at the store gave me instructions, he was very knowledgeable. I took the first dose and it made me feel sky high. Still had all my symptoms but i just wanted to vegetate on the couch, watch cartoons and eat Doritos. No more for me!
I figured anyone taking THC or cbd would not be able function properly and would get fired as well. Thank you. By the way do you like Ace of Base? Every time I see your bass of spades name I remember the music group. 😐
The name comes from me being a bass guitar player, and my nickname used to be Ace. So i put together a group and called it bass of spades. This was just a few years before ace of base had their hit, i saw the sign! I was known as Ace on bass, not Ace OF Base! Lol! Notice they spell it base, not bass. Maybe they smoke freebase cocaine? That'll jar their datscan!!
THats hilarious and yes I know the difference in their and your spelling. I play some guitar and some bass too.
That's ridiculous. If you use a Sativa, it will keep you focused and alert. You people need some education.
Dushkow the clerk seemed to be very knowledgeable, I don't know squat about marijuana and im not going to mess with it again..... till I retire!
Only 500 mg thiamine? He started me on 4000!
I am taking 500 only. Now that he’s on absence, I don’t know if I should increase my dose. I have no one to re-evaluate me with his Thiamine approach. I feel great with the medication and Thiamine he recommended, but i am unsure if increasing to another 500mg should be increased in the late afternoon or take 1000 in the early AM? Any suggestions?
Unless you're having a problem with it, don't change!
Hey Bass, did the Hinz protocol help only in the early stages ?
Im not on the hinz protocol anymore, been experimenting with typical Parkinson's drugs like Carbidoopa Levadopa and selegiline. Frankly, i think I was doing better on the hinz protocol. Drugs are cheaper but I guess you get what you pay for . I really would like a better doctor!
Yes that is where I’m at too - 5 mg of selegiline per day, a little over a gram a day of Mucuna w carbidopa. What prompted you to get the DAT scan?
Ive been dying to get a datscan since day 1. My neurologist finally got a nurse practitioner with some compassion and she wrote me the referral! The neurologist just wanted to repeat brain mri's that are always negative, probably because he owns the scanner and makes money from them.
Less advanced than mine. At least they're pretty colours. I had my 3rd today. Not sure I can get to see the results
Yes the colors are pretty! Good luck Wiinie!! How far apart were your scans?
May 2018 (diagnosis) Jan 2019 (trial screening) today July 2019 (24 week trial)
Oh, what are you trialing? Hows it going??
I'm on the SPARK trial. Seems to be going well
I'm claustrophobic and had to have an MRI as well today. Large glass of red wine needed
Hi, Winnie. I was terrified of an mri too and said I would never had one (eating words and red wine go well). I don't know if its available in your area...I'm in northern Colorado and my neurologist found an open mri. Still a pain in the patoot, but not nearly as bad as a closed mri. Best to ya!
Some trials will provide copies of testing if requested.
Yes. Work in progress. I asked to see the first trial scan and my research coordinator agreed to send me colour prints but has been unable to obtain them. Always tomorrow. I noticed that the anonymous box was ticked on today's prescription
hi Basso, happy to see you in good health and in person, even if I would have preferred a picture of you on the frequency of light ...😂
I love that you call me basso!
Stay positive! That’s 90% of the battle and why you have been so good.
Thanks, it ain't easy!
Hi Bass
At least you know where you are standing.You should have done even earlier. I have seen dozens of DatScan for different people in the internet. As per my research on DatScan, luckily your PD is in very early stages. I am sure you can keep it as it is even improve it for years with lifestyle changes.
Best wishes
Kia
Thanks my dear friend ! I wish I had the scan years ago too, but i had a long period of "doctor issues "! Lol
Yep, looks like mine did. My consultant sent me for a DaT scan to confirm his diagnosis at the start of it (dx Jan 2016 age 54). I’d had definite symptoms for a year (initially foot drop, screwing up my toes, minor tremor) and then looking back possible symptoms for longer. Like you I’m a musician and I’d noticed my hands weren’t working like they used to. Thought I must be out of practice and bought one of those springy hand exercisers -hah!
And like you (I hope?) I feel pretty good still. 100/25 Levodopa 3 (sometimes 4) time’s a day. 1mg Rasagiline pd. And 4g of Thiamine - though I’m not certain it helps but figure it’s worth a try. Been taking the Thiamine for over a year now. Perhaps I’d be worse now if I hadn’t been taking it? There in lies the conundrum - we never know how we’d be if we’d followed a different course...
Chin up and soldier on!
Marc
Thanks my friend!!!
The severity of the deficiencies as described on the DAT scan Does not correlate or is reflected in how you feel or the extent of your ailments.
Your scan would be described as a moderate dopaminergic Degenerative deficit. A severely abnormal scan which showed barely any activity in either putamen or caudate nuclei.
The DAT scan is an excellent test, but unfortunately it does not reflect the overall dopamine system in the brain
Thank you, do you mean in general?
I see plenty rays of light! Hope springs eternal. There are so many things coming down the pipe. Focus on where you want to go....and ride like hell. Science will have your back and eventually catch up to you.
Your positive vibes are stellar in the literal sense of the word !!!
youtube.com/watch?feature=y...
Check this out. I love this video. Listen carefully. Also, I'll reach out with some other things to consider.
All
I’ve been tracking and mimicking for over two and a half years the early, small sample NAC trials , both of which have been predictive positive (the latest one at the p < .001 level) in reducing classic PD symptoms. Been taking 2400 mg per day. With C/L 25/100 3xDay.
Google NAC for more information.
I also fast walk, resistance train and row every other day, along with 2 x mo Feldencrais and deep tissue massage sessions.
Plus daily supplements (Mag Glycinate, B, D, CoQ10, Skull Cap, anxiety med, Advil’s, a slice of Ambien and 50 mg of gummy Melatonin before bedtime for sleep, and OTC constipation meds).
Haven’t found any shortcuts; but my cluster of early PD symptoms have been greatly reduced and I feel near normal 80-90% of the time. I am 75 and now in to 5+ years of life with PD.
Hope this helps.
hi
how did you arrive at taking 2400mg/day of NAC? the studies I saw were at 500-600mg.
did I misread them? my integrative dr has me taking 600mg/day.
ths chris
I was taking 3600mg nac a day when I was on the hinz amino acid protocol. I recently started slowly building up my nac again with 1200 mg a day. Glad you're doing well!!!
My naturopathic doctor at Rothfeld Apothecary in Waltham, Massachusetts made the Rx after learning about the initial NAC study results. Google Dr Rothfeld for more info.
Good luck!
How useful is a DaTScan?
Why was my post deleted?
Effects of medical marijuana on a daTscan
