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Parkinson's Movement
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Extreme dose of carbo/levo

My husband was diagnosed with Parkinsons in 2016, of course it took a long time to get meds adjusted. But finally doctor put him on 3 tabs x 7 times a day = 21 pills. I will admit that did seem to stop his tremors, but concerns me he is on such a large dosage this early into the disease. I contacted Dr. Constantini about Thiamine dosage, but have not been able to convince my husband to take it, his excuse his he already takes so much medicine and he does. In addition to carbo/levo he has other meds he takes for other ailments. I am also concerned as he seems to begin to have more off periods now and absolutely has no stamina any longer to complete simple task. Just wondering if anyone else takes this much. Thanks for any replies and information I get.

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Search Youtube, Doctor Fahn levodopa. Also same search HU. If I remember, Doc. Fahn would send levodopa as high as 2000mg.

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:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 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

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

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Can you post links to the OTC meds you buy? I’d like to buy the same for my Dad. He has moderate PD, but we try to control using CBD oil for rigidity and MP. He could definitely qualify to take Sinemet but the honeymoon period on that scares us. Trying to use natural as long as we can.

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Vitacost dot com for otc vitamins

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Can you link the ones you take?

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From the website search bar, enter thiamine hci

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We'd love to have my Dad take the specific one you take -- given your immense, credible knowledge in this area. When I typed in " thiamine hci" in search bar, nothing came up. When I type just "thiamine", a bunch does come up and I'm not sure which one to choose. I'm so sorry to keep asking about this. Truly am.

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The search bar on web page vitacost.com.

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Yes, indeed. I went to that site, and typed in "thiamine hci" like you said. Nothing came up. If I just type in Thiamine, a lot of brands. Can you please tell me the brand and dosage you take and I'll put that into the search bar? Thank you!!!

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Try thiamine hcl

Vitacost brand

300 capsules

500mg capsule

$29

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Thank you!!!! Buying it right now.

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What is the dosage you take?

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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:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 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

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

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Thank you Roy! So grateful.

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I would like to start on CBD Oil - but, I know nothing about it. Could you share the brand that you use, how much you use, when you take it & where to buy it? (I live in Texas. I think that CBD Oil without THC is available here.) Thank You!

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Hi, I like and use for myself and my Parkie mom Bodē Wellness 1500 Extract. I know Bodē and saw his harvest and appreciate that his CBD oil is organically grown and in organic MCT coconut oil. bodewellness.com

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Thank You for sharing. WoW! That stuff is expensive. Not sure when I'll have that kind of money to try it out. Good to know - though.

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EVERYONE IS DIFFERENT ... my wife has had PD since 2007 and is on about 6 pills a day 25-100 -- She was on more but dyskinesia got really bad so she cut back. She would rather be very very sloow/occasionally freeze than crazy shaking. I actually think she is under medicated and should be on about 8/day. Let me say again.....EVERYONE IS DIFFERENT.

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I would share your concern, 2100 mg per day is, IMHO, a pretty high dose for being diagnosed less than 3 years ago. Unless he has to completely eliminate his tremor for work-related reasons, were at me, I would make the trade-off and live with some tremor and less levodopa, but that's just me.

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That is a lot of C/L. Look on Google to see how much is too much.

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He tried the ER but could not take it, also could not take Ropinrole and some other meds Park doctor prescribed

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I was diagnosed in early 2017 and take B1 1g/day and 3x100/25 c/l per day. Sometimes I forget and take only one or two and does not seem to affect me too much. It does not do too much for tremor anyhow. Avoiding stress is much better for tremor. My neuro asked me to try 6 pills per day but I did not do it.

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That is horrific! I am amazed that a doctor has prescribed such a huge amount of levodopa. The side effects are worse than the tremors.

Has your husband tried doing exercise, before he went onto such a high dosage of levodopa?

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Horrific? Uh oh. my husband takes 2 tablets 3x daily of C/L 25-100mg for the last several months. Originally started with 1 tablet 3x daily but because of some falls and freezing the dosage was increased.

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I agree. If anything, I’m trying to minimize my medication. And I exercise with a personal trainer at home. Now I realize that each PD patient is different, so I’m not commenting on the wisdom of others, but purely logically-speaking, it does sound excessive??

Peter

Port Elizabeth

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Hi DrPete. I live in Cape Town. If you look at my website - reverseparkinsons.net and contact me I will send you my videos and a whole lot of info and the name of other people there in PE that I have worked with.

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Hi John. Thanks! I’ve got your inspirational book. Twice! By mistake. I wrote to you last year

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Maybe you can pass one of them on to someone else and help that person!

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Could he try the B1 dissolved in a sipper bottle.My husband takes 2 500mg capsules with unsweetened black currant juice, d-ribose, mannitol, inositol, b2 all dissolved in a litre bottle which he drinks during the day.

He is supposed to be taking 6 capsules Sinemet a day but is only taking 1 but thinks it doesn’t do much. He experimented with more but decided it wasn’t doing him any good.

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This may not be the case for your husband, but Parkinsonian symptoms can present in both an under- and over-medicated situation. For me personally, another factor is the length of time it takes medication to settle. My healthcare-providers confidently say

8 weeks to know if an adjustment is correct, I 'know' for me it's a minimum of 12 weeks.

Hope you can both get it sorted.

Best wishes

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Several years ago my Movement Specialist prescribed 3 Sinemet tabs x 6 times a day = 18 pills. For the past year I've struggled with extreme exhaustion, frequently sleeping 16+ hours daily. As a result (by my own) I cut back to 3 tabs x 3 times a day. I am also attempting to find the correct B1 dosage. At the time of my visit I was taking 1,000 mg of B1 upon waking and another 1,000 mg four hours later. I discussed this with my Movement Specialist and she ordered a blood test. My results for B1 were 191 nmol/L and the Standard Range is 70 - 180 nmol/L. My results for B6 were 5.6 nmol/L and the Standard Range is 20.0- 125.0 nmol/L. I did some research and learned that Carbidopa can deplete B6 possibly causing: depression, confusion, nausea, anemia, susceptibility to infections and rashes. After receiving the test results my Movement Specialist strongly recommended that I immediately start taking 100 mg of B6 daily. It's been about a month now that I started taking Solaray B-Complex 100. I currently take 500 mg of B1 upon waking and another 500 mg four hours later. My exhaustion has past and now I experience other PD related sleep problems which at least are less debilitating than the exhaustion.

It might be beneficial if your husband gets a blood test to see if he has low B6 levels. According to the Penn State Hershey Medical Center, "Vitamin B6 (pyridoxine). Has been used to treat Parkinson disease, but it is controversial. Vitamin B6 can make some Parkinson disease medications less effective. Naturally-oriented physicians may use vitamin B6, to reduce the side effects of these medications. If your doctor suggests such an approach, the treatment should be done only by prescription and with the knowledge of all prescribing doctors."

The Penn State Hershey Medical Center has an interesting website which can be viewed at the following link: pennstatehershey.adam.com/c... I hope this information is useful and I wish you and your family the best.

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Your link is a dead end: "Requested article does not exist on this system."

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Sorry about the disconnect. If the attached link doesn't work, I searched Pennstatehershey and then selected Parkinson's. Hopefully this link works - pennstatehershey.adam.com/c...

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Thank you, it works.

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I was taking 18 a day and not feeling well. I decided to have DBS and it reduced my pills to 6 a day. Much better!

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I have taken 3 (100/25) Sinemet every four hours since after my DBS almost 7 years ago. Before the surgery I was on a roller coaster of every agonist and inhibitor etc. with no normalcy. Sometimes it would work, and sometimes it wouldn't. All I take noe id Carbo/Levo and it's been consistent. Most progressions since DBS have been assisted by the surgery and programming. Guess I'm feeling lucky but never bragging! Tomorrow is another day!

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How many hours in between diok

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Can I how many are there in between you have the three,??

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3 pills 25/100 every 3 hours

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Once upon a time I was strictly on sinemet and every bad thing you can tho of happened to me!

Then I stumbled on Zandopa and everything turned for better! I was able to go for workout do cardio and weights which really improved my energy level! Then I bought John Pepper book and started walking, added cyclinG. When the med wears out I still have issues but can manage well without med up to 12 hours! Lately I've been playing football with my son without,. I still do my role and weights without! I believe everybody is different!

I've tried the b1 as Roy suggested but felt worse after noticing some few days benefits but I'm back on 1g once a day and observing

I've read a lot of selegiline benefits for mood and depression plus other benefits however my neurologist is not willing but I'm insisting

Let me add that whenever I need many hours of on time I add sinemet cr to Mucuna Zandopa and works perfectly although if have to eat heavily then keep moving to enjoy the benefits

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that is a lot of Sinemet I would check with your neuro I have been diagnosed 7 years and only take 10

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vigorous exercise will be a massive help cycling walking etc whatever you enjoy

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We are taking 15 pills of Rytary (36.25) along with a neupro patch - 4mg...it's been 5 years trying different doses/meds (particularly the sinemet immediate and/or extended release)...now, we have delusions and hallucinations - my concern is these drugs can cause that with increase over time...our honeymoon period has ended (5 years), and when I asked the doctor if the meds can cause the hallucinations, he said no, although it's in all the books. Now we have a diagnosis of possible Lewy Body Dementia. I hope your hubby doesn't begin to have hallucinations or symptoms of dementia over time. It's more difficult to deal with cognitive issues than physical in my opinion.

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That’s where I’m at with my husband. He was diagnosed in 2013 and is currently in Sinemet 2tablets 3tines a day. As of last year hallucinations started then the confusion has crept in. I was in the process of reducing and neurologist wanted to increase. We didn’t want to so then they wanted him to take seroquel. Tried a very minimal amount and it did nothing. Did not want to increase that either. Very difficult working threw this!

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Praise God, he has not experienced any hallucinations, just concerned what the long term effects of taking so much could be, sorry for your husband suffering from hallucinations.

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You might try switching to Rytary

It provides a more consistent release of c/l.

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After a failed mucuna protocol ,I went back on sinemet Not knowing how much mucuna i had been taking the dR prescribed 2 tabs eveRY 2.5 hrs 21 tabs well I must be an individual who blows thru dopamine like hotcakes cause even mucuna it didnt matter what dosage I tried i could not get past 2 1/2 hrs so he increases it to 2 1/2 x 7/day a week ago, a week latter I am experiencing 24 hour dyskinesia and pyschotic episodes Other symptoms include terrible burning of the tongue and cheek,an immediate worsening symptoms immedately after taking the meds there are other symptom that come go

another question I was hoping i'ld get an answer to would hdt work if blood workindicates already hi range b6 was in the toxic range

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I was diagnosed in 2010. I do not have tremors but have motor and some speech, sleep and related issues.

I recently had my medications adjusted..

I feel so much better than I ever did before, people who know me can’t believe the change (I am 71). More talkative, energetic , I now look forward to things, and I feel happy again.

Prior to this new regimen I was taking :

Azilect , sinemet and Amantadine.

New Regimen:

I take 1 Azilect, (1 mg), 5 Sinemet (25-250),

1 4mg Neupro transdermal patch per 24 hours, and one 137 mg GOCOVRI Every day.

Parkinsons is a very custom fitted disease. It affects everyone slightly differently.

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I am young onset PD for 14 years,I take sinemet 200 mg every 2 hours, I am working 6 days per week 9 hours per day, I would like to take vit b1 but I am scared ..

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Hey...I’m taking about the same amount...do u have dyskinesia? Also, curious if u have tremor and if u are “on” overnight or just let yourself wear off...thanks!

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Hi,I never had tremor,I sleep very little, my rigidity and pain in my neck wokes me up I have dyskinesia if I don't take amantadine.

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Hey... thanks for replying !

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Hi michey, I joined this forum about 6 months ago but haven't been on in awhile. I notice you're on 200 mg every 2 hours. I'm on the Carb/Levo 25-100 pill every 2 hours to treat my PD and I thought that was high. I'm confused when you say 200 mg. What is the Carb/Levo breakout on your pill...mine is 25/100. Is there a 200 mg pill? I'm just confused as I'm still learning about all this. A 200 mg carbidopa pill every 2 hours seems high?? Thanks in advance!

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Are you afraid of hi dose vitamin C? Failure to become established in thiamine hcl will leave you looking at a future progression of Parkinson

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Roy,

HDT does not work for everyone. It is not a given that it will stop progression for everyone that tries it. The way you present it is very negative and threatening.

Julie

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He is actually helping people in light of his own experience. Try to convey your message in a bit light tone so that it doesn't look an offensive one

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No he hasn't experienced any dyskinesia, tremor has basically been his only "visible" symptom, although he OFTEN complains as "shaking" inside, which I interpret as anxiety, & his off period, which is generally close to time for his carbo/levo. Because he has alot of problems with sleep, is the reason he gets 7 doses a day.

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Is he taking the high dosage B1? I had those internal tremors until I cut back on the dosage I was taking. It helped a lot.

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No, he has not tired the B1 dosage at all.

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I recommend that he try it. Little risk/potentially huge upside.

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Internal tremor is relatively common in PD. It doesn't necessarily equate with anxiety although I am sure it could.

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No, I have not been able to convince him to try this therapy, if the Dr doesn't instruct him to do it, then he won't try it, he currently is really in a lot of pain with his knee, & his back. So very hard to see your love one in pain & miserable in his own skin from Parkinsons.

Thanks to ALL of you who have replied, I am always searching for answers & ways to help him

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Hi I had a second opinion done after I was told that i had Parkinson’s but i knew there were something more wrong and I was right...

The doctor said It s in your head.,. Clearly It wasn’t...

I have my meds’ every 2,1/2,, cause I really feel like after an hour It hadn’t kicked in yet so I will have another 50mg and then I start to feel better.....

Regards

Mrs Joanne louise Huntley ..........

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I’ve got a rare disease called M.SA (multiple systems atrophy). Which is incurable....and I’m 48. Years old with 1 child and a husband.....

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My heart goes out to you joe45. May the blessings of God be with you.

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Th

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Thank you

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Thanks 🙏

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You are welcome. We are all ultimately in the same boat on the same journey. The only difference is when we get on it!

I get healing blessings from Reiki practitioners. Reiki energy really calms me down. Please see if a local Reiki practitioner can help you. It should be a free service. Do not pay for it.

I found this: reikiassociation.net/reiki-...

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filebin.net/uawuoq7vvaa3x4v... Try this book. Maybe it helps.

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