Anyone find C/L ineffective?

[Basih101]

My husband has never been helped with any meds. Has been on carbo/levo 25-100 6 per day for over a year. He has no "on time or off time". Dr. wants him to go to 8 but I don't understand why since we do not see any change at all. He is now on B1 (Dr. C. said to stay on meds, probably because he doesn't want to go against his Dr.) His main difficulty is extreme fatigue and balance problems. We are wondering if there are people that CL doesn't help. Any suggestions would be greatly appreciated. P.S. he had successful DBS a year ago for tremor.

[johntPM]

Is your husband diagnosed with PD, and was he diagnosed with PD prior to DBS? Did he respond to the meds before DBS?

To see if the drugs are really having an effect, try doing the side-to-side tap test. Do it twice for each drug cycle, once just before he takes a drug and once 90 minutes after taking it. Do this 5 times to go up the learning curve, throwing away the results. Then do it for real another 10 times. What difference do you see?

parkinsonsmeasurement.org/t...

John

[Xenos in reply to johntPM]

Thank you John for that site and your explanations. Can be useful indeed.

I recommend every body to take a look !

[munchybunch]

hi, this is exactly what happened to my husband. he has few symptoms and the neurological wanted him to take 12 madopar a day! He decided to come off all drugs e.g Sifrol and madopar. We started on B1 see threads on this site under Roy Prop and he has seen an amazing difference. we told no one we were doing this and everyone has been saying how well he looks. I ll happily give you more info if you want. I think some people don't respond so well to Levadopa. I ve heard it s people who have less tremor and are more rigid!

[Hidden in reply to munchybunch]

Hi munchybunch,

I was wondering if you could add your husbands results with thiamine to the following thread as it will be very helpful for others who were once like you and your husband when you were first considering whether to try thiamine or not. I have asked you at least two times before, but I realize because of the high flow of information through this forum, it would have been easy for you to have missed those requests.

Thank you!

healthunlocked.com/parkinso...

Art

[munchybunch in reply to Hidden]

All done! Sorry I didn’t see yr previous posts

[kgold in reply to munchybunch]

Can you post more details here or private message me. My husband has the same problem with the L/C. Would love to "chat." Just started the B1 regimen last week.

[munchybunch in reply to kgold]

You can see the thread above to easilly that I just posted. I cannot stress enough the massive improvements from b1. I must add though that it was well over 2 months before we saw a change. With my husband it’s been more non motor symptoms which have improved. His confidence has come back again and he’s enjoying life again!!

[kgold in reply to munchybunch]

Interested to know what dosage of madopar he was taking and if you tapered him off? How bad were his tremors? So glad that the B1 is working. I'm hoping for good results as well. Thanks.

[munchybunch in reply to kgold]

He was on 25/100 madopar 3 x a day. It didn’t help at all so then the neuro said to go up to 1o tabs a day! At that point he refused and we started b1. He has very little tremor. Mainly rigidity and no arm swing. B1 has made a massive difference but be patient. I think we waited 2 months plus to see a result. Believe in it. Have you seen the dr c videos? Good luck

[kgold in reply to munchybunch]

Thanks munchybunch! My husband didn't go on C/L until he fell and was hospitalized in December. Since then, at a dosage of 3-4 25/100s plus some extra mucuna, he lays in bed shaking many days. He went to neurologist last week and she wanted him to take 4 25/250s plus start on Mirepex. Definitely conflicted and not thrilled about side effects of Mirepex. Started on B1 the next day but don't have any expectations for the tremors but if it helps other things then that might impact the tremors in some positive way. I have seen some of the videos. Dr. C represents what doctors should be. All the best to you and your husband.

[move4parkinsons]

C/L has always helped me with slowness of movement and I don't have tremor

Question your doctor why he is increasing it if yo ou are not seeing results.We have got to take ownership of this disease and not be afraid of it or afraid to question the multi sciplinary team

[S70AWD]

I was dx with PD 4 years ago.About a year ago, my neurologist/MDS recommended that I start on C/L. After 3 months of horrendous nausea and no results, she finally admitted that C/L does not work for everyone.

[munchybunch in reply to S70AWD]

Same thing happened with my husband on sifrol. He was hallucinating etc. it was really bad. Out of interest do you have a bad tremor ? Apparently leva dopa can sometimes be less effective if you are more rigid/ slow type. Have you looked into b1? It really is worth looking into.

[S70AWD in reply to munchybunch]

See Reply to Basih 101. It was intended for you.

[M-o-ggy]

Vitamin D helped me enourmously with fatigue and balance. My blood test result came back as ‘dangerously low’