Stopping C/L in favor of B1?

Before I started B1 I felt C/L had no benefit for myself. Today I take C/L 50/200 three times a day. Does anyone in stage 2 Parkinson's use B1 alone without Park meds?

[Getz]

For what its worth Roy, and remember I am a newbie, on the pill side I take 1000mg B1 twice daily, L-Theanine 200mg 3x daily (Gaba, dopamine) as well as mushroom immune boosters. I then have !. A breakfast smoothie with a tsp of kapikachhu, ashwaghanda, gotu kola, amla, and astragalus made palatable with grape juice (resveratrol) and blueberries. (All of these have research to back up their use to improve cognition and neurons in the brain.) 2. I have a neurogenesis smoothie later of blueberries, cacao, flaxseed (blended first with yoghurt to make it water soluble) grape juice and turmeric. 3. A bed-time smoothie of pineapple juice, banana, and cherries to increase melatonin. 4. I also put my head under the infra-red lamp for 30 mins.

I have also ordered the near infrared helmet from Dorsett Community Men's Shed (Facebook site) in Tasmania Australia (cost $300 plus postage)

So far my tremors have subsided though are still noticeable by me , my writing has come back almost to normal, and I can drink my latte with my right hand again. Sleep is still disturbed.

I am not at all confident in the medical profession unless they are integrative practitioners which is why my protocol emphasises food. Sydney university have done wonderful work on PD and near infrared with mice and monkeys but Max Burr (from Tasmania) couldn't wait 10 years for the human trials so made his own helmet with the aid of his doctor friend and a scientist and his shakes went away. The men's shed helmet is an update on Max's bucket helmet.

[reedboat2 in reply to Getz]

Wow that’s awesome. I haven’t heard about near infra-red helmet for tremor, do you have link to any info or data on that?

Btw your smoothies sound great, I would only add some fresh pea shoots for green energy. Keep up the good work - JG

[reedboat2 in reply to Getz]

Getz I just went online and found a bunch of articles on near infrared therapy for PD. Here's a good video on the subject: youtube.com/watch?v=b1tK4oe...(Not working as expected?)

Gonna get me one of them helmets. Thanks - JG

[Getz in reply to reedboat2]

I can't find where I filed the original article but I posted it here so if you search me you'll find it. Some names worth googling though are Prof Mitrofanis, Prof of anatomy, school of medical sciences, Sydney University. Prof Jonathon Stone who supervised Dr Daniel Johnstone a medical scientist at Sydney Uni medical research centre, The Bosch Institute photobiomodulation, Prof Simon Lewis, neurologist Royal Prince Alfred Hospital and prof of cognitive neuroscience at the Uni of Sydney.

An article Red Lights on the Brain. Max Burr light therapy.

Sorry this is higgly piddly but my filing system on my computer is horrible. What I do know is that Max Burr consulted with a number of these people but wouldn't wait for the results of the human trials. I'm not sure if he is a member of this Men's Shed but he lives in the same area so I assume they have collaborated.

[Juliegrace in reply to Getz]

How long have you had PD? And, what stage are you?

[Getz in reply to Juliegrace]

Hi Julie. I have not been diagnosed as I am still on the waiting list to see a specialist. My GP simply referred me on. I may not even have PD but the shakes started a couple of months ago and got progressively worse and I couldn't drink my latte with my right hand and my handwriting shrunk and turned to print. I focused on diet, and all that stuff in my smoothies is based on brain regeneration, dopamine, and neuron regeneration. Google them on pubmed. I only came across the near infrared 6 days ago and as I researched I got very excited. I am waiting on delivery of my NIR helmet and in the meantime I'm using infra red and walking along the beach for 3 or 4 kms daily. I hope that by the time I get into the specialist I will have no symptoms of PD.

[KERRINGTON in reply to Getz]

Hi ! Is there any way, other than through Facebook, that one can order that helmet ? I haven't had luck finding it on Google, and one of the few that don't have Facebook. Thanks

[Getz in reply to KERRINGTON]

I just wet through the Facebook site and came across this post with an email. Maybe you can try that. "Dorset Community Men's Shed Hi Kelly send the details as discussed on the phone to [e-mail]" Good luck.

Many people have facebook, not for the chat, but simply for the connections and business links. Unfortunately business is taking over and its no longer just a chat interface for you and your selected friends. My family has a closed group for just family members.

[KERRINGTON in reply to Getz]

Thanks, I'll try that.

I agree re Facebook, every business says 'check us out on Facebook'. It's become the new 'yellow pages'.

[cjsg in reply to KERRINGTON]

I have a Sunlight Sauna. I got it big enough that I can semi-recline in it. I get very cold, I go in there set at 150 degrees and stay for 1 hour (sounds like a receipt doesn't it). I guess it resets my "thermostat" because I am good for 2-3 days. It has a CD player in it and I play soothing music. It also had colored lights for light therapy but I haven't had them installed. To get the temperature to 150 it has to have it's own electrical line.

[sudoku123 in reply to cjsg]

I have a Sunlight Sauna, Are you trying to say it is help?

Please explain.

[LAJ12345 in reply to Getz]

Food as medicine. It’s funny, I now find myself saying as I hand over a berry smoothly with greek yoghurt to my husband “here is your good bacteria with vitamin c and flavonoids”. I suppose I’m not really selling it.....

[Getz in reply to LAJ12345]

Food is everything medicinally. It is such an interesting area of study and for the last 50 years we have taken all the nutrients out of it by refining it. Remember when white bread came in? Refined sugar? Its incredible that natural sugar cane juice is actually a cancer killer. We refined it and then added artificial flavours to make it taste great again. We are the result of big business rather than small business. Real food is so delicious and berries are one of the greatest sources of good health. What did early homo sapiens eat when they could. Berries and fruits were easy if they could find them.

[munchybunch in reply to Getz]

I heard about the helmets. Do you think they’re built in the same way as max burrs is the same specs? Does it help at all? You say 30 mins - is that divided up in to 2 sessions?? So interested to hear about yr smoothies. Do you think any one or 2 supplements are worth taking? Not sure I could make all those smoothies!!

[Getz in reply to munchybunch]

I'm still waiting on my helmet but I have an infrared lamp so am using that. The article about Max Burr was only given to me last week and resulted in a heap of time googling. The photo of the helmet I was sent shows alternate rows of 670 and 850nm and only one at a time is on. It is run by a rechargeable battery from a cordless drill. Max Burr started only with the 670nm 20 mins twice a day and later added the 850nm. Shall find out soon what the recommended times are.

As to the smoothies, I read an article about kapicachhu and it showed the herb produced more L-Dopa than the pharmaceutical pill. TA-65 which the pharma mob use is extracted from astagalus. Ashwagandha is an adaptogen, amla has the highest vit C of any plant, and gotukola is great for micro-circulation through the tiny blood vessels. I prefer natural as when the pharma mob extract a particular substance they have not studied its interaction with other parts of the plant. This is probably why their products often mask the symptoms for a while but don't cure.

But that is my view and I'd hate anyone to go off their medication on my advice. I am a newbie to this and would suggest people find an integrative medical practitioner rather than rely solely on a big pharma medico.

[munchybunch in reply to Getz]

Thanks so much for yr answers. You are doing what we are doing. My husband was on sifrol and the side effects were way worse than Pd itself. That’s why we started on b1 and silvestrovs regime for supplementation. Has made a huge difference and he’s way better than a year ago!!

[munchybunch in reply to Getz]

How much do u put in each smoothie and where do u get yr supplies from please ?

[Getz in reply to munchybunch]

Hi Munchy, my main breakfast smoothy is not delicious as I am using a small magic bullet that only makes about 500ml (I am in Bowen housesitting so haven't got all my stuff handy). I still put a teaspoon of each of those herbs in and when blended with the yoghurt and flaxseed oil, the grape juice, and the blueberries I can't get enough blueberries in to really sweeten it up so it tastes a bit earthy. I should put some honey in but there's not much room. I'd prefer about a 750ml smoothie.

I get my herbs from ayurorganic.com.au in Melbourne who get most of their products from India (I think). Good luck with it all. I did do a fair bit of research with scientific articles mainly through pubmed and those herbs are genuine. I also originally included brahmi (circulation) but dropped it as gotukola does a similar thing. Really looking forward to getting my helmet. Hopefully I won't be so forgetful and I hope the tension and minor shakes disappear completely. I love that there is no downside to the near IR light.

[munchybunch in reply to Getz]

Thanks for that. Pls give us an update on yr progress with the helmet. Thanks again

[Erniediaz1018 in reply to Getz]

Hi Getz, first of all welcome and thank you for immediately contributing positive energy to this group. Would you please share more details as to where you purchase all the herbs and everything else you use. Are you in the US? Never mind 😊 got it. Thank you

[Bitsy in reply to Getz]

Hi Getz I found it under 'Dorset Community Men's Shed' Cheers B

[hanifag in reply to Getz]

please can I contact you by email

[Getz in reply to hanifag]

Hi Hanifag, this group advises anonymity but there's a facebook group Whitsunday Complementary Cancer Treatments that I'm a regular contributor to. You could click on me there and message me.

[hanifag in reply to Getz]

Thank you

[Motherfather]

hi roy well i have taken approx half a kilo of b1 different amounts different times so far nothing different.i stopped taking it last monday ill try again this monday starting with 1 gram in the morning 1 gram in the afternoon then go up again to 2 grams in the morning and afternoon,.i also used mannitol over half a kilo of it as well, so far not a lot of differents there i remembered u saying you used a electric tooth brush i have never had problems with cleaning teeth .maybe you were worse than me are you getting pain now or not much regards.

[Hidden in reply to Motherfather]

The videos are produced to help recognize change.

[Hidden in reply to Motherfather]

Could it be you are in early, Stage 1, with little obvious signs other than tremor.

[Motherfather in reply to Hidden]

could be but i have had pd for over 5 years now.im back on taking b1 again with out the manitol on monday.maybe it has some thing to do with my excerise that i do most days.time will tell,regards.

[condor39]

Hi Roy,

I am the other extreme. I have had PD for two years and taking Prolopa (Canadian version of Madopar) only.

I do no exercise, follow no special diet, eat whatever I want, take NO vitamins or supplements of any kind, AND

I am improving.

No one case proves anything, Big Pharma has to do studies on thousands, so bear in mind that all the writers on this website are health amateurs, I would stick with health professionals .

I sincere, fervent belief is not proof.

[jujulini in reply to condor39]

but we know best how we feel, and if we are feeling better. after all, even pharma studies base their findings in some way on how we feel as a result of taking their product or placebo.

[alaynedellow]

Hi Roy, Dr C recommended me to take Siminet with B1 as they work well together. On notes here I see Doc says only a few recently diagnosed PWP have B1 success with no meds he also says no dyskenesia with additionof B1 to meds.

[jaybird53]

I’ve been on the Hinzs protocol for about two years with reasonable results. No meds just Mucuna , Tyrosine n his amino acid pills. I started using the Vielight headgear about 6months ago n B1 2G day over a month ago. I’ve recently been able to reduce my supplements dose by a third( just don’t take my last dose anymore) w no noticeable changes. Just got the ok from my Dr who checked w Dr Hinz. , to keep it up. I credit the B1 but I’m keeping the headgear too. I think there’s a benefit to the Mucuna as it had a major affect on my condition n the B1 has just made it simpler. Haven’t experimented with varying the B1 dose yet

[cjsg]

No, sorry but we went from a 25/250 c/l every other hour to 2-c/l ER after we started B1. In the AM hubby will take a regular c/l till he has breakfast and starts the day with his meds. He was diagnosed 10 years ago when he couldn't keep up with me when we walked together. He takes 1500 mg B1 2 x a day along with the c/l ER. He has stopped falling all the time, and generally feels better.

I think it is possible to get off of the c/l compleatly but he is not willing to change his life style and eating habits.

We are very thank-full for the DELAY THE DISEASE program, and his very dedicated. instructor.

[Hidden in reply to cjsg]

CL, the Doc prefers we continue alongside B1

[cjsg in reply to Hidden]

He take 1 c/l ER and a reg 25/250 in the AM to get him started along with the 1500 B1. No off time, no falls. We did not stop our supplements and do not intend to even though Dr. C says to. We take Vit D 5,000 and a 10,000 every 7 days. Out doctor want us to have a blood count of 80 and we have not been able to get there yet. We take a 2 a day multy vit, CoQ10 100 mg, Curcumin 400 mg (at night before bed), 5-LOX inhibitor, (this is a nsaid , and for joint health), DHEA and a probiotic in the morning upon rising. and MacuGuard ( our cateracts and macular degeneration has not progressed in the 5 years we have been taking it). They are all from Life Extension. They have a full year money back guarantee on all their products no questions asked. I have purchased from them for over 10 years. Their super sale just started and will run till Jan or Feb. Maybe if we ate all organic mederatian diet, with the food carefully selected to meet each need we would stop the supplements, but probably not. We live in a small town and that type of food is not available and besides I don't want to spend the time and energy that I have left that way. Each supplement has a purpose that we feel is needed. This is along with 7 perscription medications for stroke, diabities, low thyroid, kidney protection, depression, and high colesterial.

[Johnny_joe]

Dd