Medication not working: Anyone know the... - Cure Parkinson's

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Medication not working

guy1947 profile image
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Anyone know the dosage for Vitamin B1 I'm 70 have PD 3-4 years without tremors,I take levodopa/carbidopa 125/100 8 pills a day,but they don't seem to do anything,I would like to try something else

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guy1947
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JohnPepper profile image
JohnPepper

Other than MAOb inhibitors, there is no medication that has been designed to slow down the progression of Pd. There are a number of new medications that are on trial but I am not aware of any of them that are DESIGNED to reverse Pd. They all use words like 'Could', 'May' and 'Perhaps'.

If you want to do something that has actually been proven to do something to slow down the progression of Pd. I have been able to reverse my symptoms by doing fast walking. I have also stopped taking any Pd medication since 2002. Others have been able to see improvements in their symptoms by doing Rock Steady Boxing, Dancing and Cross-fit exercises.

Look at my profile or contact me on - reverseparkinsons.net and I will try to help you to reverse your Pd, at no cost.

Benidorm66 profile image
Benidorm66 in reply to JohnPepper

I would love to try all your suggestions but PD has taken my balance so I am afraid they are all cancelled out! I am taking Thyamin Hcl, as I have suffered really bad nausea with my other medications,I started taking Thyamin in gradual doses to see if it was going to restart my nausea,I am now up to 2g a day and as yet,the only benefit I have is I no longer have constipation! I will continue to increase my dosage and hope and pray for some further improvements. Reading all the reports I have read here,I truly believe this B1 will help me!

JohnPepper profile image
JohnPepper in reply to Benidorm66

The stronger you get the better your balance will be. Also, if you try the walking in the way I recommend you will walk better and safer. contact me and I wil give you much more explicit instructions.

Grumpy77 profile image
Grumpy77 in reply to Benidorm66

Keep increasing your dose, don't make any conclusions its not working till you surpass 4g. I'm sure you've read that the amount you take depends on your weight, at only 2g dose maybe you haven't hit the right dose for your weight yet

Also you could take thiamine with magnesium citrate to boost it's performance

Erniediaz1018 profile image
Erniediaz1018

You might also want to try mucuna pruriens.

It may be that you have been incorrectly diagnosed with PD and that, dependant on your exact symptoms, you may have MSA or PSP

guy1947 profile image
guy1947 in reply to

That's possible,the neurologist said he thought it was some kind of PD.

Don_oregon_duck profile image
Don_oregon_duck

I, currently, have similar issues and was wondering if my medication is substandard or not. So far I have found 4 possible causes of CD/LD inefficiencies.

1. Taking CD/LD too close to meals. Since the LD can only make it to your brain when it desolves in your intestine, if it is stuck in your stomach because of the food jam, you will not get the effect you need. The LD molecule looks just like a protein molecule, so if you have a high protein meal the LD does not get the free pass to your intestine, it must get in line with the other protein molecules as your body can not see it to be different and will not pull it out of the line into the fast lane. Result, you will recieve a partial or no benefit from the LD.

2. Since we are on the subject of the CD/LD not getting out of your stomach, constipation plays a big roll for keeping your LD from making it to the brain. For both numbers 1 and 2, if you think either of those are possible, just keep a journal of the times, the medication effect, meals, and whether you are constipated. Result, you will recieve a partial or no benefit from the LD.

3. Look at all of your CD/LD bottles to see who the manufacturer is, keep notes if the manufacturer changes and if you feel a different effect when you changed to a new bottle with a different manufacture. I was questioning whether I had this problem 3 with my meds. MY situation is that I am taking Rytary, a sustaind release CD/LD version. Rytary is produced by only one manufacture so I was confused about whether I could blame the medication.

Since I am on the Hi Dose Thiamine HCL program, have consulted with Dr. Costantini, I wrote a "whiney" (my definition) letter to the Dr, asking him for advice. My letter generally generally told the Dr. " I don't feel good, I have recently felt much better, please help me and offer me council to help me to get feeling better." (Doesn't that sound whiney?) He got back to me immediately with solution number 4.

4. There are times when the B-6 in the multivitamine may prevent the LD from reaching the brain and doing what itis supposed to do. Result, you will recieve a partial or no benefit from the LD.

Dr. C was right. By the end of the second day of no multivitamine I started day 2 feeling a little better than the day before, and ended, day 2, playing 3 holes of golf. I witnessed a miracle.

Now you have four possible reasons why your medication can be less efficient at times compared to other times.

Gioc profile image
Gioc in reply to Don_oregon_duck

I Don,

I keep a job as a florist sometimes overwhelming for the patience that you need to have with an elite audience, and the days when I think I feel worse are on Monday when I'm at rest.

After three years of b1 I can tell you that my case, beyond the highs and lows, is basically stable, even without looking at the UPDRS test, or pull test that is always a single step back.

Hard to believe certainly ... but that's what matters: A my substantial slowdown in the progession, I not use an absolute since old age comes for everyone.

Gio

cjsg profile image
cjsg

I was told that the Levadopa was the important part of the pill and it should be higher that the first number the Carbidopa. I wonder about the dosage. I have seen 25/100, 25/200, 50/250 but never 125/100. If that is really the dosage I would say no wonder it isn't working.

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