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paulinepie

Velvet Bean

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I am treating my husband's Parkinson's Disease Symptoms with a few doses of Velvet bean. It is as effective as taking the pharmaceuticals - Sinamet, which contains both levodopa (the good guy) and Carpidopa (seriously bad for humans).

This and Ashwaganda are effective in controlling the symptoms with no apparent side effects.

 

Has anyone else used VB in this way or used any other alternatives for Parkinsons.

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On 12/22/2017 at 7:36 PM, paulinepie said:

I am treating my husband's Parkinson's Disease Symptoms with a few doses of Velvet bean. It is as effective as taking the pharmaceuticals - Sinamet, which contains both levodopa (the good guy) and Carpidopa (seriously bad for humans).

This and Ashwaganda are effective in controlling the symptoms with no apparent side effects.

 

Has anyone else used VB in this way or used any other alternatives for Parkinsons.

 

Hi Paulinepie, so sorry you both have to work with Parkinsons and thank you so much for the info. I find it really valuable to hear about direct experience with treating Parkinsons with natural products

 

May I ask what stage your husband's Parkinsons is at, and how long he has been taking Mucuna ( Velvet bean ) for?

 

Hadn't heard of using Withania ( Aswagandra ) for Parkinsons but I have used it as a general health product previously and found it really well tolerated and effective- thank you again

 

A few of my close relatives have Parkinsons- one with the longer term form ( +20 years since diagnosis, now late stage + dementia ) and two with the faster term form ( one has passed, the other diagnosed recently and progressing rapidly )

 

My family member with the longer term form is remarkably resistant to trying anything not prescribed by the GP or specialist, which is frustrating but is their choice.

 

When I saw them last they were willing to try medical cannabis ( informally sourced ) high CBD tincture ( unsupported by formal analysis but a widely distributed form ) to combat the frozen state and hopefully reduce tremors.

 

However his tremors and frozen state are quite advanced, and the tincture wasn't suitable to titrate a dose with in my absence- it was too slippery to measure small amounts and would require some dilution. His partner was not at all supportive of the treatment and informed me that they would not continue with it in my absence as his tremors would not allow him to dose alone reliably. We ended up not trialling the product at all.

 

I've heard high CBD products can be effective for Parkinsons tremors, freezing etc and if you are comfortable trialling and able to source some I'd recommend beginning with a low dose and set a comfortable amount as soon as possible after diagnosis.

 

If your clinician is comfortable with CBD co-administration with pharmaceuticals I'd confer with them. My relative is off all anti-Parkinsonians at this late stage but is taking antipsychotics for the delusions- they have been helpful, but potential contraindications with the antipsychotics were another reason for not undertaking the CBD even at small doses and they do not wish to confer on this matter with their clinician.

 

Thank you so much for your valuable insights into potential non-pharma treatments. I wish you both, and your family, all the best on this difficult journey. If you are able to share further experience I'd love to hear of it, either online here or via PM

 

 

Edited by Darklight
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Further, given the gut bacteria changes implicated in Parkinsons progression, have you tried either water kefir or milk kefir?

 

In addition to slowing gut bacterial changes it can improve gut motility and decrease constipation in healthy individuals. There is potential for it's regular consumption in Parkinsons patients but I have yet to see any academic data on it.

 

As gut bacteria studies are a relatively new field the absence of formal data doesn't surprise me too much. Because it is unlikely to interfere with pharmaceutical drug actions I'd be giving it a go for a week or so. This, however is just my untested opinion

 

My relative with longer term Parkinsons will not try it. My relative with the rapid-progression form cannot tolerate water kefir at all- we have yet to try them on milk kefir

 

We make our own water kefir from fresh grains. It all sounded terribly hippy-ish to start with back in the day, but there are a few of the fam who are deriving benefit from it and the taste is pretty good so it's a winner

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Hi Darklight

 

My husband has had PD for 10 years and this last year has seen dramatic dlining of cognitive function and general ability.

He has been using ashwaganda and velvet bean sporadically for about 3 years, but since resigning from work 6 weeks ago, I have had him on a strict programme of taking the Velvet bean every 2 hours, with zink, magnesium and iodine. I also suppliment with Vitamine B twice a day - HPA Essentials by Metagenics (addressing adrenals plus trying to reignite the receptors that the Carpodopa has destroyed) and Lecithin once a day. I also give him a KAVA tablet with the first 3 or 4 doses in the morning as the cognitive function is enhanced (I take some myself - great stuff).

On top of this he takes the Siferol and Sinamet in the morning, augmenting with one (or two half) at night to "unscramble" the brain to enable him to sleep.

There has been a small but discernable improvement within the last 2 weeks - watch this space.

Sleep and constipation are the two worste enemies.

We do as much as we can for the compacted faescies but with limited effect. We will try the Kefir - thanks.

I have researched the medicinal cannabis, but currently Parkinsons is not on the included allowable program. Apparently the best is getting the fresh bud and juicing it immediately. However, we are not growing it due to regulations and our urban property will not sustain the space required.

We are about to pick up some organic "supersulphur" and should have some results within a month. 

I also note that Ashwaganda requires a break every month of a few days (we have given a break over the last 2 weeks). Once the sulphur regime is in place, we may start up with it again.

Ever in hope :) 

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PS I heard that the fungus Lion's Mane is excellent for brain enhancement but my supplier's "mother" plant is not well - soon perhapse.

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On 1/5/2018 at 10:17 PM, paulinepie said:

I have researched the medicinal cannabis, but currently Parkinsons is not on the included allowable program. Apparently the best is getting the fresh bud and juicing it immediately. However, we are not growing it due to regulations and our urban property will not sustain the space required.

 

Now that is a shame :( Are there any informal dispensaries in Perth you know of?

 

I would def acquire a script for melatonin for your husband, it's becoming increasingly recognised as beneficial for Parkinsons. Unlikely to interact AFAIK but please do your own checking of anything I say

 

Wrt Lions Mane I'd advise caution and small doses. In fact given the Sifrol/ Mucuna etc etc I'd advise against it. I read something about it potentiating psychosis in some late stage Parkinsons patients. I lost those refs a while back and am chasing them up again.

 

There are a bunch of variables around that statement above which do need checking

 

Have you used it earlier in your husband's PD progression?

 

With you in hope

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Yup- sleep and constipation are huge barriers in PD

 

Melatonin is excellent for sleep for a lot of ppl

 

Melatonin ref from 2011

 

I know the kefir sounds like too simple a constipation solution to be effective, but please let me know how it goes for you. It's such an easy place to start and if you can't make your own, local Farmers Markets often sell them, or find a good quality local fermented foods person on FB. Is a bit of a thing right now so locating someone with experience could be easy

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Can i ask, what is it in the velvet bean that is able to pass the brain barrier and help the Parkinsons?

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13 hours ago, kadakuda said:

Can i ask, what is it in the velvet bean that is able to pass the brain barrier and help the Parkinsons?

 

l-dopa

 

SAB sells an almost hairless strain of Mucuna which is easier to process. The hairs on the plant are a PITA, if you grow it I'd advise growing this type:

 

http://www.shaman-australis.com.au/shop/mucuna_pruriens_v_utilis_velvet_bean_seed_packet_pr_598.php

 

 

 

 

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but orally i thought it was super hard to pass into the brain?  im a bit rusty mind you, but would be quite interested for a close family member.  but all the meds he takes slowly lose their efficiency and so onward to being paralyzed...

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5 minutes ago, kadakuda said:

but orally i thought it was super hard to pass into the brain?  im a bit rusty mind you, but would be quite interested for a close family member.  but all the meds he takes slowly lose their efficiency and so onward to being paralyzed...

Kadakuda

The gut is the main influencer on what passes the blood barrier - read brain grain for reference. Much of what you read in mainstream pharma/meds is a load of BS and supposition, as much of current theory is being turned on it's head and proven wrong. 

 

Update on the alternative treatment so far.

The reversal of many of the PD symptoms are in process with my husband - small steps but even he as a complete alternative sceptic is sitting up and making an effort. 

Constipation. After a few colonic irrigations, we bought our own enima set, which after two weeks of use started to help. My husband has not used it for a week now and is able to pass faeces naturally and daily (nealy a year since that last happened). I have also increased the number of glasses of water per day , with alarms set every half hour, if not for some kind of meds the for water. This is hydrating him more and 

Sleep. Although he was never a good sleeper, sometimes he barely got 2 hours of sleep with the latter PD. He now wakes up once or twice during the night but manages 5 - 6 hours total of sleep most nights. THis has an amazingly beneficial effect on is daytime behaviour and cognitive function. 

He is keeping his intake of protein small - maximum 100gm per day; the greens and salads intake, always available is now being consumed in slightly larger quantities and more regularly. I have not managed to wean him off grains totally, but the amount he eats is greatly reduced. Ditto chocolates. He only has one coffee a day, which does have milk (mocha) nut it is a small one. We have noticed that if coffee is taken within 15 minutes either side of the meds, alternatives or mainstream pharma, it affects in an overdose type of way.

Organic sulfur. This is interesting. As one of the essential minerals needed by the body, the reports on users of the sulfur are incredible - is it the new youth and regeneration elixir of life? ok - we think it is assisting in the sleep pattern as well as energising him (and me) as we take a teaspoon twice a day (mixed in a large glass of filtered water with juice of half a lemon and some elderflower cordial). He will nnot, but I also take a small pinch of Celtic salt which I chew before dringking a half glass of water. Celtic salt has over 90 essential minerals as opposed to normal table salt which has essentially 2 and therefore bad for your system. Listen to the talk by Barbara O'neill from Victoria  - although I don't agree with everything she says, ther is much wisdom in most of it.

NOTE:

- the Sinamet which is recommended to PD patients has both L-dopa and Carpidopa. The Carpidopa kills off the Vit B receptors with many side effects and actually is bad for everyone. It was only added to the treatment to inhibit the nausea experienced when the L-dopa is administered.

- I ensure that all meds are given with at least half an hour of taking anything else - tablets have all sorts of anti-caking agents and other additives which often interfere with various other compounds. Liquid administrations - Drink Zink and Iodene forte - are ok to mix with the Velvet bean.

Positive news so far - I will report back in a month .

 

 

 

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I also note that my husband does have some kefir, but not enough to make a difference. He is getting more sunshine - I insist tht he does some outdoors work in the garden daily - this over and above walking the dog in the morning. He also sometime cycles, but not far and not during heavy traffic times as he is worried about his balance. Fresh air and sunshine also produces melatonin naturally. I havent used it a a suppliment yet as the resistance level to taking too many is high!

 

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Mucuna definitely gets into the brain.  I used to take it when I was at uni, i would feel so sharp it felt like lasers were coming out of my eyes.  I found the crushed bean to be better than the extract but also a little more variable.

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Found Dr Constantini in Italy who advises that Vitamin B1 taken in high doses (cut all alcohol and coffee ) will do the trick 

We are including it in the regime so 3grams in the morning and 3 grams at lunch (12 tablets! a time) - 1 month trial

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Bought some at the local health food store.  (Now brand Dopa Mucuna brain suppport)

Nice effect with just one capsule for about 4 hours.

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