Time for meds?

[jimmydook]

Hi all, dygnosed November 18,been doing lots of exercise, fast walking,swimming, exercise bike, having problems now, right foot cramps up, toes curling, almost impossible to do fast walking or treadmill, now happening on bike, nuero seems unconcerned. I was thinking maybe time for meds, need to exercise, tacking b1, and the rest, any opinions would be appreciated

[Enidah]

When my toes start hurting and curling under I know I’m under medicated. Time for meds. Then I just wait for my meds to kick in before I do anything.

[jimmydook in reply to Enidah]

Thanks

[KERRINGTON]

I take Neuro Magnesium L Theonate for pretty much the same issues, and it has never failed me. Also on B1, Mucuna, *BOTH 9 MOS, Mannitol, 2 MOS., Tru NIAGEN 2WEEKS

[jimmydook in reply to KERRINGTON]

Thanks

[KERRINGTON in reply to jimmydook]

Have had PD 12-13 YRS, diagnosed over yr ago.

[jimmydook in reply to KERRINGTON]

How much do you take please

[KERRINGTON in reply to jimmydook]

Hi, I take a low dose b complex with minerals and essential vitamins, 1,500 to 2,500mg B1 , tblsp Mannitol, 400 mg Coq10, 2 droppers B12 sublingual, 1 TRU NIAGEN, 400 mg cur cumin, 3 capsules Neuro magnesium, vitamin D3-K2, and about 3 to 4 Solaray Mucuna 15% dopa every 3 to 4 hours...more if I'm socializing. It comes to about 600 mg of dopa daily. I take B1,mannitol, try niagen( blame misspell on computer)

cur cumin daily, the rest about 5 times weekly.

When this stuff no longer works I'll crossover to meds little at a time.

[Despe in reply to KERRINGTON]

Hi Kerrington. My husband is taking Keter Wellness MP 20% L-Dopa 2-3 a day. Have you considered taking a 20% L-Dopa to avoid taking it every 3-4 hours? MP always works and if one finds the right dose, there is no need to increase it or starting conventional meds with side effects?

I have scheduled and appointment for my husband with Dr. Laurie Mischley (sp?) in April. Hope she can help even more although my husband is doing pretty well right now.

[Juliegrace in reply to Despe]

Are you going to Seattle or Skype-ing?

[Despe in reply to Juliegrace]

Hi Julie. It's going to be telemedicine. Skype and phone calls. Too far to go to Seattle from the South.

[Despe in reply to Despe]

Julie, do you have a personal experience with the doctor? Thanks.

[Juliegrace in reply to Despe]

I didn't see this because you replied to yourself, otherwise I would have responded sooner. Yes, I have seen her and she's great.

[Despe in reply to Juliegrace]

Thanks, Julie. Can't wait to talk to her. I have to gather all medicals records and either mail them to her or email them--quite a project . Do you still see her, how has she helped you? We basically need guidance on vitamins, minerals, amino acids, and especially MP.

[KERRINGTON in reply to Despe]

Hi again ! I just started taking Keter Mp 20 %. I find that I need 3 pills 3 x a day, maybe more. Does this sound like too much ?

[Despe in reply to KERRINGTON]

Hi Kerrington! It's a trial and error procedure. My husband was taking it (20% - 2/day), but it was too high for him so he switched to 15%, twice a day. I believe this is the right dose for him. He started it a few days ago and he is doing better. Too much dopamine is just as bad as no dopamine.

[Motherfather]

hi jimmydook well i think its time to take your meds either madopar..or sinemet, regards john.

[jimmydook in reply to Motherfather]

Thanks

[ddmagee1]

Did your Neuro check you for resting tremor, cogwheel rigidity, and do you have more spasms, elsewhere, other than your feet? My right foot was cramping up, calves stiff, and knees hurt. I couldn't walk far, without having pain. I was put on Sinemet, when I had the above mentioned symptoms. 1 tablet, 3 times a day. After a year, that was upped to 1& 1/2 tablets, 3 times a day. Those particular symptoms are reasonablly controlled, at this time. It's been several years, since I've been diagnosed, but the neurologist thought I have had Parkinson's for about 6 years before that. I was referred to a neurologist, only a few years ago.

[Getz]

Mate I am new to this as well. Have been trying lots of things, especially diet, but am really interested in probiotics at present. Things are improving as a result of dietary changes plus supplements but have recently been reading about probiotics and it seems these can well be a key to blocking alpha-synuclien build up and promoting neurogenesis. Try to boost probiotics and foods that boost them. Increase your intake of probiotic foods and take probiotic capsules. An alkaline diet helps.

[jimmydook in reply to Getz]

Thanks

[mannp]

Taking b1 Thiamine hcl eliminated almost all my symptoms including toes cramping and curling under. I highly recommend this treatment. It’s not a cure but this stops progression if taken lifelong. I had success within weeks but others take up to 3 or 4 months for results. Please check out the Facebook group “Parkinson’s Thiamine hcl”. It is dedicated to HDT (High dose thiamine) protocol. Usually the sooner you start the better your response. It is much better than taking medication with known side effects. Please read the posts on the Facebook group. A lot of valuable information and instructions for HDT protocol.

[jimmydook in reply to mannp]

Hi wot brand do you take?

[Hidden in reply to jimmydook]

My recommendation

vitacost.com/vitacost-vitam...

[narcisa56 in reply to mannp]

Hi!

I'm about to start B1 - one thing bothers me though (since you say it sometimes takes several months for the effect to become evident - if I start at a low dose, I should probably keep raising it until I see some improvement. And if I need more improvement, I should probably continue increasing it until I get side effects. Is my thinking correct?

[Tribselyov]

OK to take them as a trial since meds neither hasten the progression nor slow it down. Be careful in your conclusions since the bounty of placebo carries a 30% "improvement."

[jimmydook in reply to Tribselyov]

Thanks

[jimmydook]

Thanks

[ConnieD]

My dystonia only happens in the morning and stops after I start taking my first dose of sinemet. I don’t have dystonia during the day. My last dose of sinemet for the day is around 6pm. Mucuna or sinemet should help. Magnesium, staying hydrated, and magnesium oil may help. One of our members has been helped with b1, I take the same dosage of b1 but still get the toe curling. We are all different.

[jimmydook in reply to ConnieD]

Thanks

[JohnPepper]

i jimmydook. That sounds like Dystonia to me. Have a look at this and see if it helps:

voiceaerobicsdvd.com/speech...

[jimmydook]

Thanks for the link John, was following your advice, but it kicks in after about, quarter of a mile, starting to happen on bike now as well

[Kwinholt]

Hi jimmydook, I’m an ultra runner with PD diagnosed 6 years ago. My first symptoms were the curling of the toes , locking and twisting of my ankle and locking of my hip. I could not move , walk , let alone run. When the dr gave me Cd/ld within 2 weeks I was running again. I am now also on Azilect, Comtan and I also get Botox in my leg and foot every 3 months . If I didn’t take my cd/ld regularly I would be a locked up mess. I’ve tried the B1 protocol , but it didn’t work for me but it’s worth a try . Lots of people benefit . But I would also consider its time for the cd/ld. Take care K

[jimmydook in reply to Kwinholt]

Thanks