Need some suggestions

[Justme4]

I am not very responsive to C/l does anyone have any suggestions I might try?

Thanks

[Hidden]

High dose therapy of thiamine hcl

[Justme4 in reply to Hidden]

* have tried HDT I can't seem to get the dose right. It causes me gait issues. I fall alot when i take HDT

[Hidden in reply to Justme4]

Vitamin B makes you fall. What effect other vitamins?

[Art_lover45 in reply to Hidden]

Roy, I have no-one else to ask. My GP is sending me to have a kidney scan and bladder whatever as I told her (I had seen somewhere in Dr.C's website) that if you have swollen feet or ankles tell your dr, So I did. I am terrified that I will be told to stop the B1 as it is the best thing ever for PD peeps like me and I had only just raised it to 2gms daily and up popped my ankles. Nowhere have I read that B1 causes water retention. What do you think?

[Hidden in reply to Art_lover45]

Tell your doctor you have swollen feet does not mean tell your doctor vitamin B1 caused swelling.

[Art_lover45 in reply to Hidden]

I did not do that! My GP is lovely but I can see she thinks I might have some sort of heart failure. I have had a couple of scares at night - well more than a couple actually - and she recommended that I take the 15 mg lansaprozol morning and evening as she suspects the chest pain (which is really scary) is caused by the acid reflux as part of my hiatus hernia problem. Seems to have worked. I cannot get anyone on the NHS (apart from the Maxilla /facial clinic) to take it seriously. Which is why I keep coming back to you. My neuro specialist is never around and I see the PD nurse twice a year. She is very keen to see how I am getting on but the Thiamine protocol is not anything she is prepared to get involved with. So when my feet (right foot actually) became painful and swollen when I upped my B1 from 1 gm to 2gms I was immediately alarmed that I would have to stop it completely. So! Now I am back to taking 250 mgs 3 times a day and so I shall persevere. Thanks for listening, Do you have a book by the way and is it easily accessible?

[GymBag in reply to Art_lover45]

Look up " The lymphatic system " It moves a large amount of liquids around the body but it has no pump, age results in sluggish movement and it is treated with exercise and keeping feet slightly elevated during sleep and application of skin cream and other ways and it does need attention. Try not to self diagnose ,we always imagine the worst.

[Lizzy9 in reply to Justme4]

Hello ~ HDT did not work for my hwp so we tried B1 Thiamine Mononitrate. I realize it isn’t the recommended B1 Thiamine but it is also water soluble AND it works!! Hwp hardly ever has anxiety now, laughs & cracks jokes, he talks soooo much more, shows feeling in his expressions. In other words ~ he's come back!!! He is on a very low dose of 25 mg twice a day. He is recently diagnosed and weighs about 160 pounds. He still has a tremor, but it isn’t too bad most of the time. He also uses the Wellred Dual Coronet Infrared Helmut twice a day and we started him on melatonin. So who knows ~ is it just the B1 Thiamin Mononitrate? Is it the WDC? Is it the melatonin? Is it the combination? We don’t know so we are continuing with all of it because this is what is working for us!!! And all our help came from this forum!!!Good luck and God bless!!!

[GymBag]

If the Parkinsons medication does not work than high probability that you do not have PD. Not necessarily a good thing.

[condor39]

There is a need for a lot more information before offering advice.

What dose were you taking and for how long?

[Justme4]

Roy and everyone else I have had a dat scan that showed Parkinson’s or one of the other god awful of diseases. I do respond to it somewhat just not for long periods of time. Take Rytary 195 and 245 at the same time three or four times a day neupro patch 4 mg I tried hdt at 500 mg but by day 7 when I’m ready to up the dose my gait is off are you falling I have had testing done for which have been negative thank goodness