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Parkinson's Movement
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Parkinson's Alternative Treatments

Has anyone used and had any positive outcomes with using Natural Remedies for Parkinson's

56 Replies
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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.

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document , answer and submit.

4. In Files, Dose Adjustment

5. In Files, (2) From and by Dr. Costantini

6. read Announcements

Website: Dr Costantini's guidelines on Parkinson

stopparkinson.org/en/table-...

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Thank you for the information. Will follow up

What is C/L

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Carb/Levo

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I have now brand 100 mg tablets I've taken 6 of them in morning, How long does it take to see a difference and how do you know how much to take, not sure what 2 grams is in pill form. Are their better brands of b1 and can you get results from natural sources, I take bee pollen for b vitamins and desiccated grass fed liver pills have a good source of b vitamins.

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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.

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document , answer and submit.

4. In Files, Dose Adjustment

5. In Files, (2) From and by Dr. Costantini

6. read Announcements

Website: Dr Costantini's guidelines on Parkinson

stopparkinson.org/en/table-...

Reply

I have had Parkinson for a little more then 20 years. I have just about tried every natural treatment that is available.some of them did help, but I didn't feel they were worth continuing. About 9 months ago I started taking mucana , which is 97% pure ldopa. I also take some vitams,amino acids, and some medications with it. I take -100 mg Amamidine 2X a day, 50mg of Mirapex 2X aday, and .25 mg of Xanax 3X a day. Taking the mucana helped, but not enough. My neurologist suggested that I try a small dose of Sinemet with the mucana. I did, and it helps me more then anything else that I have ever tried. I feel almost normal for about 5 to 6 hours. I am now taking 500mg of mucana 1 or 2X a day depending on my schedule. I started with 200 mg. Of mucana and increased it slowly. I am on a the lowest dose of Sinemet. I was weary about a taking it because of the side affects.

I am going to add B1 Thiamine hcl tomorrow.I am hoping and praying that this will give me some more relief. Hope this helps.

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What is your total L-dopa mg a day, both Mucuna and Sinemet? You wrote you started taking 200mg Mucuna. What was your Sinemet dose when you started at 200mg Mucuna? I am so happy for you. You sound you are doing great after 20 years with PD!

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The levadopa quantity in Mucuna varies depending on the source but is about 5% of the seed. It is one of the reasons doctors prefer pharmaceutical c/l - because dosing is more accurate and consistent. So, if you're going to ask "how much" you also need to ask "which one" or you won't get the same ldopa level. clinicaltrials.gov/ct2/show...

Also, if your husband is also taking carbidopa, he should only need around 1/5th the amount. Obviously the correct carbidopa dose depends on the required ldopa dose which will vary with disease progression.

Why does he use sinemet at night instead of carbidopa and MP?

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Thank you for your insight. For 150mg MP L-dopa, he takes 1/2 tablet of carbidopa. He takes this (MP + Carbidopa) X 2 day. I am not really sure if this is the right amount of carbidopa or L-dopa for that matter. Are you saying that he should be taking 1/5 tablet of carbidopa? All these questions and then some are for Dr. Mischley to answer during our next consult late this month. He seems to be doing OK so far. He's found that taking 1/2 tablet Sinemet helps him to sleep better. If he takes MP before bed, nycturia won't let him get enough sleep.

He takes Azilect, too. He wants to stay away from Sinemet as long as possible due to known side effects. MP really help his tremor. Also, we found out that Sinemet makes him lethargic and moody if he takes it during the day.

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Dr Mischley is the person to talk to - she will give you far more helpful, better qualified, advice than I can. To try to answer a bit

Sinemet in the UK is available as 12.5/50 25/100 10/100 and 25/250 (and slow release variants). Most people talking about a sinemet tablet , or half a tablet mean 25/100. So your husbands half a 25/100 is the same as my dads 12.5/50 (Dad used to take 12.5/50 AND a 25/100 - effectively "one and a half sinemet" in your terms)

25/100 is the most common by a long way. So the normal mix of C to L is 1 to 4. I'm not really sure why 10/100 (1 to 10) is used - but the reason for not using it is the higher Levadopa required increases nausea

(You can use other substances to prevent levadopa metabolism by decarboxylase. Madopar uses benserazide instead of carbidopa. Some people can tolerate one and not the other. If you're husband is tolerating carbidopa well then stick with it. If you want to go natural therapy - green tea and ascorbic acid (vitamin C) are other ways to improve levadopa absorption, if you are keen on MP ncbi.nlm.nih.gov/pubmed/156...

I'm not sure whether the 150mg MP refers to 150mg levadopa content (implying a fair bit more MP - around a gram and a half), but your normal 1:4 mix would suggest 37.5mg carbidopa. I'm only aware of Lodosyn which is 25mg carbidopa, so half a tablet would be 12.5mg meaning a 1:12 dose if there is 150mg levadopa in the MP. Maybe the other things you are doing, including Thiamine, affect what works best here for him.

It's all these variables that cause MD's to tend to prefer the "standard" medications. If you are using 12.5mg carbidopa to 150mg levadopa (in MP) then maybe try Sinemet 10/100.

But Dr Mischley is the person to ask.

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I hear you. . .You're right, she is the best qualified to answer my questions. Actually, the MP my husband is using is sold on her on line pharmacy. However, she told me that she will have a medical student who is "The Mucuna Queen" as she described her to give us instructions on MP. :)

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". . .implying a fair bit more MP - around a gram and a half. . ."

150mg is not 1.5 grams. 1,500mg will be 1.5 grams. :) The MP extract my husband takes is TATTVA'S MUCUNA Extract 500mg, 15% L-Dopa (75mg X 2 = 150mg L-Dopa). For a minute you got me worried as 1.5 grams is A LOT of L-Dopa.

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So your husband takes 500g of extract twice a day and 2 half tablets carbidopa. 150mg daily of levadopa and 25 mg of carbidopa. That's 1:6 and probably close enough for jazz. My Dad was taking that amount 4 times a day-so 4 times as much levadopa daily, with a bit more carbidopa because sinemet is 37.5:150 instead of 25:150. The nearest equivalent would be to replace his MP/carbidopa with half a 25:100 or one 12.5:50. That puts him on 3x half a 25:100 dose equivalent. About the lowest possible starter dose. Obviously the Azilect helps there. I have to say the Azilect side effects scare me more than the sinemet ones. If he feels taking CL as MP/lodosyn is preferable to sinemet (except at night) and his symptoms are well managed at that dose then he's hit a home run on effectively CL 12.5 50 TDS.

The big goal now is to slow the progress of the disease as long as possible to delay the need to increase that dose and you are clearly working at that. Is he doing anything specifically to try to manage his microbiome (a Winnie the poo theme subject 😉)

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Dear Winnie,

You are so helpful, thank you for that! Actually, I was thinking about it and based on your recommendation, he will try half the dose tomorrow morning (75mg L-dopa/12.5 Carbidopa) X 2 day. Today, I believed he was a little "high," on 150mg L-dopa x 2 day plus 12.5 mg Carbidopa X 2 day, as he said, so we figured he doesn't need as much L-dopa yet :) . It's just an endless trial and error, but we are working hard at that. We will figure it out one of these days. :)

Lodosyn is out of reach, TOO EXPENSIVE! Even if our insurance will pay, our co-pay will be at least $1,000. Cash price/out of pocket is $8,865.99!!! I will check it out though just out of curiosity. For the brand name AZILECT, we paid more than $200.00 co-pay.

What are the side effects of Azilect? Haven't checked them out, but I have heard very good comments from our MDS and Dr. Mischley.

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Gosh. Medication costing is not such an issue for us. I presume you have a generic for carbidopa - I've never looked, and wasn't aware of one. Presumably it is a 25mg tablet like Lodosyn. I can find no information about it. Where do you get it?

Azilect, or Rasagaline, one of Mr Peppers great MAOB inhibitors, and the one where there was some research to indicate that it slightly slowed progress in early PD, delaying onset of levadopa medication by 9-18 months. It was being investigated with Isradipine, as in combination that appeared to show enhanced reduction of disease progress, but with the failure of the Isradipine phase 3 trial last month, I suspect Rasagiline's "disease modifying benefits" are back in the woolly and marginal if anything category. It has all sorts of side effects you can google. The ones I was thinking of are

serious side effects, including: fainting, loss of balance, mental/mood changes (such as confusion, depression, hallucinations), worsening muscle stiffness/twitching/uncontrollable movements, swollen ankles/legs, easy bleeding/bruising, unusual strong urges (such as increased gambling, increased sexual urges).

Also it can cause drowsiness and affect driving (important for me)

Also This medication may increase serotonin and rarely cause a very serious condition called serotonin syndrome/toxicity. The risk increases if you are also taking other drugs that increase serotonin, so tell your doctor or pharmacist of all the drugs you take. Get medical help right away if you develop some of the following symptoms: fast heartbeat, hallucinations, loss of coordination, severe dizziness, severe nausea/vomiting/diarrhea, twitching muscles, unexplained fever, unusual agitation/restlessness.

That said, as with Sinemet, it is important to put these in context. Many of these side effects occur very rarely. Every drug produced has a 2% incidence of constipation, 2% diahorea. The EMA / FDA approval process balances therapeutic benefit against possible side effects, and the drug wouldn't get used if there weren't a majority who received worthwhile benefit with no or acceptable side effects

Exercise, and managing your poo (microbiome) offers much more promise for disease modification in my view, but then that's my theme song. And just maybe, BIIB054...

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Winnie,

So far so good as far as Rasagiline is concerned. If he experiences any side effects, he will stop it. Yes, we got the generic carbidopa, but I found out that we can get the brand name for Lodosyn by using a Specialty Drugs Pharmacy for a fraction of the quoted price. Long story. . .Our pharmacy is CVS.

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Despe, can you share with us the Specialty Drug Pharmacy? The generic using GoodRx is almost 160$ for 90 tabs. Thanks for the response. Thanks

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It depends on the pharmacy chain. CVS has Specialty Drug Pharmacy Program. We have BC/BS Federal insurance. What kind of insurance do you have? I checked BC/BS Pharmacy programs on line, one of them is Specialty Drug Pharmacy Program. I printed the information and showed it to our pharmacist. He said that this (our) local CVS doesn't have Specialty Drug Program but another CVS in a bigger city had it. He will transfer the remaining of our prescription to this bigger city CVS who will call me and ask me if I want the refilled prescription mailed to me or our local CVS pharmacy. Hope it helps. Ask me if you have more questions. :)

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CVS is my reg pharmacy. On Medicare and Aetna drug ins. They don’t cover carbidopa. GoodRx is 159 at Costco and CVS is 245 for 25mg 90 tabs.

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I am sorry. As I wrote previously we have BC/BS Federal. Can you go to their sites and check their pharmacy programs? I logged on to BC/BS, checked their pharmacy programs and found out that they have this Specialty Drug Pharmacy Program. You could do the same going on line and find out what their Pharmacy Programs are.

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Thanks were the reply. Unaware of the website.

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aetnamedicare.com/en/prescr...

aetna.com/

ParlePark,

Do you have an account? If you don't, create one, log on and find out about their pharmacy programs.

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Thanks so very much.

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You're very welcome. I could log on to their site, but I don't have Aetna/Medicare and couldn't create an account with them.

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I can't find carbidopa anywhere with any Google search even if I use a VPN with a USA IP address. All I get are carbidopa/levadopa tablets. So I can't check tablets are 25mg carbidopa only. Can you post a link?

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rxlist.com/consumer_carbido...

There are more links. Hope it helps.

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Thank you!

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I've just taken a look at your MP tablets. (I'm an accountant, so good at sums). The ingredients list shows that about half the ingredients is organic mucuna pse, which is 15% Ldopa, and the rest (to keep the sums simple) is near as anything 2%. So, one 500mg tablet has about 40mg ldopa, not 75mg. If I understand you correctly, you said he will now take one MP and one half carbidopa twice a day. So each dose is 40mg levadopa to 12.5mg carbidopa. Thats quite close to Sinemet 12.5/50. If I've got that right he will be taking "natural" C/L 12.5/40 x2 and sinemet 12.5/50 x1. Broadly equivalent to 3x 12.5/50 sinemet a day or 3x half a 25/100 sinemet a day. That makes sense - and 12.5/50 C/L TDS would be an entry level dose for early PD, boosted by the Azilect. Previously, his day time doses would be 2MP plus one half carbidopa, so 12.5/80 twice a day . Thats probably not the best ratio. One half carbidopa per 500mg tablet is the nearest you can get to a "normal" 1:4 at 12.5:40.

Hope that makes sense

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It makes sense. Thank you!

I always believed as others do too that you multiply the total mg extract by % L-dopa listed on the bottle (500 X 0.15 = 75mg L-dopa). Was I wrong? Or your calculation to arrive at 40mg L-dopa is for this particular brand?

Yes, he is early PD, diagnosed last March although symptoms had started long before that.

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The label for this brand on the back says 218.5mg of the 500mg is raw herb at 2% so 4g and 218.5 +27.5 is extract at 15% is 36.9g so 40.9g ldopa in total

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Winnie,

The bottle we have doesn't have the numbers you wrote. Are we talking about the same brand? Will give you more details tomorrow.

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I just looked at tattva Mucuna

amazon.com/Mucuna-15-L-Dopa...

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They have changed it to Organic Mucuna PSE 280mg extract (15% L-dopa) Raw herb powder 197mg (2% L-dopa).

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Ok. About 50gm levadopa per tablet for cash. Just right for 12.5 carbidopa. Unless the carbidopa is CL.

I was reflecting on your hideous medicine costs and wonder if that accounts for a different attitude to alternative health care on both sides of the Atlantic. In the UK, under the NHS, prescription medicines are effectively free, so going natural with MP is the expensive option. Hence the guy from Glasgow posting vitamins were a waste of money. Completely the other way around in the USA

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Thank you! I hope we are on the right track. No, Carbidopa is just that, generic Lodosyn. Medication is not free anywhere, you may think it is, but most likely your taxes pay for it and you are under the impression that meds in the UK are free. NOTHING is free now a days.

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I take 500mg in the morning and 500 mg about 5 hours later. Sometimes I only take it once a day depending on what I am doing that day, I aways take the vitamins and amino acids along with the mucana.. The mucana does not have anything in it to get the ldopa to the brain,but the amino acids and vitamins in combination do.

When I started the initial dose of 200 mg of mucana, I was not taking any Sine met at alll..

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I've read that mucuna puriens has many other brain enhancing nutrients that help get mp dopa to the brain. To accomplish this, one must take mp that has more of the natural mp. like a tablet/powder that contains either 5, 25, 40 % dopa, and the rest velvet bean (mucuna puriens ). For instance, when I want 100 ish mg of mp, I take any combination of mp, such as 2 Banyan tablets each contain 20- 25 mg, and 1 Solaray at 50 mg. dopa.

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I take 100% l dopa along with 1/2 tablet of 25/100 of sinemet and some vitamins and amino acids. You have to take carbadopa like in Sinemet or something else to get the ldopa to the brain. We are all so different . I stick to what works for you. I was also fortunate to find a doctor who will use alternative medicines. God bless.

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Hi, I didn't mean to infer you should change anything. I was just relaying what I've read. Thought you'd be interested.....

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I'm sorry. I was ery interested. Thanks for sharing you knowledge with me.

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:)

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Thank you. Was thinking about adding 1/2 tablet Sinemet to one MP, 15% L-dopa (75mg L-dopa). Experimenting different combinations to achieve the best result. We know our own bodies and what works best for them. :)

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can Mucuna give side effect? Thanks.

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Yes

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same side effects as Ldopa, Kinson etc? Thanks.

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I haven't experienced any.

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Hi, which kind of Mucuna you are taking ? Powder or capsules ? Over the corner or via Internet ?

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I take the powder . I buy it over the internet. I will let you know the brand and where I order it. I have to look it up. I will get back to you .

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Still think a teaspoonful of Mannitol in coffee in the mornings helps me. If I stay low carb it is also beneficial.

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After I was diagnosed with PD, about 15 years ago, I began making nutrient-rich smoothies daily, with fruits (apples, cherries, cranberries, etc.) enriched with herb powders (alfalfa, kelp, turmeric, ginger, cinnamon, etc.), with the intent that they might protect my brain from further damage, and that they might provide the needed substances to restore and heal my damaged systems.

Although my symptoms were very minimal, the neurologist prescribed 3 sinemet tabs daily. After learning what little understanding the medical establishment has of this condition, I decided I would do my own research and experimentation with my health, rather than to pay the drug-pushing m.d.s to do so.

So I haven't returned to see any neurelogist for more than 12 years. In the meantime, I reduced my intake of sinemet to two at night, and none during the day (perhaps a tribute to the effectiveness of my daily smoothies). Then I discovered the benefits of mucuna bean powder mixed in a tea of matcha green leaf powder. Now I rarely have any need for using sinemet, at all.

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Hi Tarz.

How did you get your refills for the Sinemet over those 12 years if you have not gone to the neurologist in over 12 years? I don’t know of any doctor in the USA who would prescribe medication refills sight unseen for that long a time. Are you perhaps in a different country?

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I do live in the United States. The short answer is - My pharmacist, knowing my situation, as a shut in, living alone, without transportation, was able to maintain communication with the general practitioner at the free clinic where I had also gone to get the sinemet (generic) refills, and he renewed my prescriptions for me.

In the meantime, I was able to decrease the dosage of sinemet from 3 to 2 (and sometimes only 1) tablet per day. Thus I was able to stockpile the tablets between refills. Then when I discovered mucuna, I had a good supply of the sinemet at hand.

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What mucuna bean powder do you use? What matcha green leaf powder do you use? Are your Sinemet tablets 25/100?

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I have used several different brands of both the mucuna and the matcha green leaf powder, which ever has the best price, and have found no detectable difference in their quality, from brand to brand. And the Sinemet I have used has been 25/100.

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My mum has Parkinson's - diagnosed 3yrs ago. She has a tremor in her hand, small writing, and very slow walk and movements. She takes mucuna pruiens as a tincture 3x per day. (Brought in the UK.) She tried a low dose of Madopar (to increase gradually) but it made her extremely miserable and her symptoms got worse. Now she is due to have a a hysterectomy and the doctors are worried about MP reacting with the anaesthetic.

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Yes! I have been able to reverse most of my movement symptoms and have lived a normal life since 2002. Visit my website - reverseparkinsins.net and contact me, it will cost you NOTHING!

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