My husband takes Carbo/Leva 25/100 three times a day at 1 1/2 pill first thing in the morning and at lunch, then 1 an hour before dinner and one extended release carbo/leva in the evening about an hour before bed. This just does not seem to be enough, as symptoms are getting worse such as speech problems, rigidity, and tremors. The neurologist had him try Rimantadine in addition, but that made him feel bad. He couldn't really describe how it made him feel, but he was feeling worse, so the doc discontinued Rimantadine. I am wondering what other meds are people taking in addition to carbo/Leva that seem to help. I would like to suggest something to the neurologist. Thank you so much!
Meds to take with Carbo/Leva: My husband... - Cure Parkinson's
Meds to take with Carbo/Leva
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tbirchf
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thiamine hcl, 4grams daily divided into morning and afternoon.
Further info: Google Doc. Costantini, neurologist, Parkinson's, B1
tbirchf• in reply to
Do you take your thiamine hcl along with carbo/leva?
• in reply totbirchf
Parkinson's disease relief:
Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Join my facebook group:
"parkinson's thiamine hcl"
facebook.com/groups/2322600... …
Parkinson's Relief, Questions and Answers
Guide:
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
5. Website: Dr Costantini's guidelines on Parkinson
stopparkinson.org/en/table-...
Kind regards,
Roy Propsner
tbirchf• in reply to
Your reply was extremely helpful. We are going to contact the neurologist on Monday to find out if my husband can switch to ER carbo/leva at your dosage, which is actually a little less total carbo/leva per day than he is taking now. Of course, I know better than to ask the doctor about the thiamine regimen. We have been in contact with Dr. Constantini previously when all the thiamine information was coming out on this blog, but my husband did not feel so well when he took it. He has still been taking thiamine but at a lower dosage and I don't think it's enough to help him. I am anxious to try your dosages of carbo/leva and B1. Thanks again!
Also, my husband was diagnosed in 2012, which must have been about the same as you. You are right about the first 5 years being the honeymoon! Amazing the difficulties you describe are the same as my husband has for the most part, but my husband also has swallowing/speech/phlegm issues.
I second the idea of ER carbo/leva.
Also worth a look: healthunlocked.com/parkinso...
tbirchf• in reply to
Do you take your b thiamine with food or without?
• in reply totbirchf
W/o
tbirchf• in reply to
ok thanks. We just got a reply from the neurologist...he has agreed to prescribe carbo/leva ER 50/200 taken 3 times a day. I don't know if we should go to 3x a day like the doc prescribes or stick with your regime of 2x a day. Of course we will be taking the thiamine 2x a day also but did not tell the doctor. (My husband chews up the thiamine pills because he has trouble swallowing them whole, even though they are supposed to be easy to swallow.) It feels good to have some hope that things might get better! Thanks!
• in reply totbirchf
Easy to swallow is only with capsules, not pills.
tbirchf• in reply to
My husband has been taking 4 g of thiamine, 2 in morning and 2 in late afternoon, for about 10 days now and he just does not feel well. He is real nervous and shaky, on the inside and out. He is ready to stop taking the thiamine. He also switched from 25/100 carbo/leva four times a day to carbo/leva ER 50/200 three times a day, but the doctor said he should give the carb/leva at least 2 weeks before changing meds. Do you have any advice? Thank you!
If I read your post right he’s not taking a lot of carbo/levo per day.
I think you’re saying he takes a half pill in the morning (so 50/12.5);
Then another half pill at lunch;
Then presumably 100/25 at dinner (or is that a half pill too?)
Then the ER to go through the night?
It could be he’s simply not taking enough.
My consultant neurologist explains that the 50/12.5 is basically a non-therapeutic dose to get you started. The basic low-level therapeutic dose is 100/25.
Has your husband tried 100/25 every four or five hours?
Then add to that Rasagiline- not because it makes much difference to symptoms but there is some evidence that it slows progression.
And then try the B1 and see how you get on with it.
But get the LDopa dose right first!
Marc
My husband takes one and one half pills in the morning, one and one half pills at mid day and one pill in the evening. Then one ER pill an hour before bed. These are all 25/100 pills so he gets a total of five pills that are each 25/100 carbo/leva. We really want to stay away from higher dosages if possible. We'll ask about Rasagiline, thanks!
My husband takes Requip with C/L and has good results. Seems that different meds work for different people.
thank you, we'll ask the doc about it!
I take one c/l 5 times a day plus Sinemet 2 x’s, entacapone 2 x’s, mirapex 2’s. Working pretty well for me most days. I’ve had PD 10 years. Good luck!
I meant selegiline on that first Med.
Amantadine worked for me. They say that there are side effects re sleeping but I have not experienced any - I was experiencing dyskinesia in the evening but it's all but gone now. However I believe exercise is the number one remedy the more the better. I do one hour of biking, Rock Steady boxing or Ashtonga yoga 6 days a week and it's giving me almost a normal life back. After 16 of PD I still work full time as a business executive. Everyone is different , but I believe there is a combination of something that works for each one of us. I have a friend that says CBD oil changed his life?
Don’t know effects of CBD on PD but I can say that it is an extraordinary supplement. Would guess that if nothing else, it should help with the anxiety of PD.
Have you had PD for 16 years?
Yes, and I just put my deposit down to climb Mt Kilimanjaro. This diease is manageable
100 levodopa is not that much 3 times a day maybe he needs to increase rather than adding new meds?
We had excellent results with Rytary...not as an addition, just the only one.
Does it help tremor
It is a PD med, used for symptoms of that disease. It worked well for my husband in all areas.
Mirapex. I have only been taking it with C/L for a couple of months but it helps some.
I use the neupro patch
My husband takes Rasagiline in addition to Sinemet (similar dose to yours).
Tremor?
Yes, he does have tremor in hands, chin and feet.
Does the med stop the tremor
The meds help but do not stop it completely. The tremor is fairly mild so far.
I take the same dosage except at night 50/200. I also take Mirapex at night. Couldn't do without it. I would have restless legs and internal tremors.
Each person is affected differently. There is no standard to follow for all the persons affected. I found that most neurologists are very busy and are not able to spend much time for each patients. I decided to learn more about the condition ( by the way I a retired gynaecologist and is suffering from Parkinson's for the last 7 years) .During my search i came across a web site from Mayo- clinic about treatment options for parkinson's which is meant for professionals.
Now I take carbi/livo 25/100 first in the morning. (around 7.30 am.
After 4 hours I repeat the dose along with that I take an entacapone tablets. Entacapone has no effect if taken alone but when taken along with carbi/levo it helps to prolong the action of the former. 4 pm I have another carbo/levo, again at 8 pm. At bed time i have Pramipexol 0.378 mg tab and also Rosanglin 0.5 mg tabs ( both are dopamine agonists.
I also take Gebapentin 300 mg tab at bed time which helps to reduce the pain and help to have a good sleep.
Since I started the above regime I feel much better.
I also suggest the exercise as medication. It is very very important as medication. There are many exercises recommended for parkinson's , one can in the utube and one can chose that fits each individuals. Please discuss with your neurologist and make necessary changes in the treatment. No need to suffer that much, i feel.goodluck.
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