Category Archives: sinemet

Jaw Misalignment

This may be a little premature but I am so excited I had to write you. I have just determined I have a jaw misalignment. First, let me give a little background.

I was diagnosed with Parkinsons about 13 years ago and have been struggling with this awful disease since. I am a nurse and had to leave my job about a year ago. I have done every alternative Rx you could think of. My symptoms started getting worse and the medication Sinemet was not helping – leaving me very fatigued and not able to walk across the room without assistance.

Then about a week my husband saw an old friend and he purchased some honey and bee pollen from him. I might add this guy is a bee keeper and has his own honey and pollen. Well I started taken a spoon full of pollen with a spoon of his honey and I swear I felt a little better the next day, so I have been faithfully take a spoon of each every morning and feel it given me a lot more energy.

Then I came across your interview with Cheryl which was a blessing. I really believe God put us in the places we need to be at the right time and we all need to tune into our higher self. Listening to Cheryl’s story really interested me because her story sounded a lot like mine. I actually called in and spoke with her. I was the last caller Rose.

I immediately called the Parkinsons Resource Center and talked to Ms Rosen and she got back with me. Since I live in Maryland she suggested I see Dr Branden Stack in VA. And as it turns out he is the Guru of this treatment. I made an appointment and saw him today.

OMG, after his examination he told me my jaw was grossly out of alignment – he stated 1 inch – and immediately gave me an order to get a mri which I immediately went next door and tried to get it done on the same day but could not. I have to wait and get it done tomorrow afternoon. Dr Stack says he can help me.

So I know it is a little premature, but I have a gut feeling correcting my jaw misalignment  is my answer to getting my life back as Cheryl so summed it up in those words. I will keep in touch and let you know my progress. Like I said my mri is tomorrow and my TMJ might have to be corrected with TMJ surgery which is minor. When I think of all the years and all the money I wasted, although I take that back, this was a learning experience and I am truly a different person today because of it. THANK YOU ROBERT.

Rose

Robert Rodgers PhD
Founder 2004
Parkinsons Recovery

Parkinson’s disease dopamine

Two L-dopa sources for Parkinson’s disease dopamine are the prescription medication Sinemet and the over the counter supplement Mucuna. Compounding Pharmacist Randy Mentzer answers the following question:

“Can both be taken and if so can there be unwanted side effects?”

Treatment of Parkinson’s disease symptoms often involves taking medications aimed at increasing Parkinson’s disease dopamine levels in the body. Among the various treatment options, Sinemet (a combination of levodopa and carbidopa) is prescribed by doctors to help alleviate motor symptoms by replenishing dopamine.

Patients and practitioners sometimes add  mucuna pruriens, a natural supplement, to the treatment regimen. While mucuna does not require a prescription from a doctor it is, like Sinemet, a medicine that  contains L-dopa. The body converts the L-dopa to dopamine.

Understanding Sinemet

Sinemet is a prescribed medication for Parkinson’s disease that combines two drugs:

  • Levodopa: This precursor to dopamine is converted into the neurotransmitter dopamine in the brain, which is crucial for regulating movement and coordination.
  • Carbidopa: This component prevents levodopa from being converted into dopamine before it reaches the brain, which helps to maximize the effectiveness of levodopa and reduce side effects like nausea.

While Sinemet is effective, its impact usually diminishes over time. Patients usually need to take higher and higher doses to achieve the desired result.

Enter Mucuna Pruriens

Mucuna pruriens, often referred to as velvet bean, is a natural source of levodopa. It’s been used in traditional medicine for centuries and is now gaining attention in the context of Parkinson’s disease treatment. The beans of the mucuna plant contain L-dopa, the same compound found in Sinemet.

Potential Benefits of Combining Mucuna with Sinemet for Parkinson’s Disease Dopamine

  1. Enhanced Dopamine Levels: Since mucuna contains l-dopa, it may potentially boost dopamine levels in the brain, complementing the effects of Sinemet. Some studies suggest that mucuna could offer a more rapid or sustained increase in dopamine levels compared to synthetic levodopa.
  2. Reduced Motor Fluctuations: Mucuna might help in smoothing out the “on-off” fluctuations experienced by some Parkinson’s patients on Sinemet alone. The natural levodopa in mucuna might work more consistently to help manage symptoms throughout the day.
  3. Possible Reduction in Side Effects: Some users report fewer side effects with mucuna compared to synthetic levodopa preparations. This could be due to the natural formulation of mucuna.

Considerations and Risks

  1. Lack of Standardization: Unlike prescription medications, the potency and purity of mucuna supplements can vary widely. This lack of standardization means that the exact dose of levodopa can be unpredictable.
  2. Drug Interactions: Mucuna may interact with Sinemet, potentially altering the effectiveness of either medication. It’s crucial to monitor any changes in symptoms and adjust dosages under medical supervision.
  3. Side Effects: While mucuna might have fewer side effects for some, it’s not without risks. Potential side effects include dyskinesia (the side effect Randy mentions in his answer to the question posed to him above), nausea, dizziness, or digestive issues. Always discuss these possibilities with your healthcare provider.

Practical Tips for Combining Mucuna with Sinemet

Consult Your Doctor: Before introducing mucuna into your regimen, have a thorough discussion with your neurologist or primary care physician. They can provide personalized advice based on your specific condition and treatment goals.

Robert Rodgers PhD
Founder 2004
Parkinsons Recovery

How Do I Wean Myself Off of Sinemet?

I recently found out after 10 years I do NOT have PD. I am trying to get off Sinemet after being on it for 5 years and having a very hard time. I can’t find a single doctor with any experience in getting people OFF Sinemet. The doctor that diagnosed me as not having PD has been backed up by 4 other neurologists. While I have great respect for him I am very worried about NMS or DAWS. My question is How Do I Wean Myself Off of Sinemet?

Since he admits I am a bit of a novelty I am very concerned about his plan to get me off Sinemet in a week. I’ve been tapering very slowly due to debilitating muscle cramps that have torn muscles in my hip and knee. I am afraid this rapid detox while attractive might be fatal if I am living on the edge of DAWS as I suspect I have been for some time.

I would feel much better if I knew of a doctor with experience in weaning people off sinemet. Do you know of any such centers or doctors? I live in central California but can travel.

Thank you.

Laurie

Response to How Do I Wean Myself Off of Sinemet?

I can certainly emphasize with your need to wean yourself off of medication that you do not need. This process takes time and patience. In my research, I recommend a resource who has helped many people wean themselves from one medication or another. Doctors are not trained to help people with such challenges. This is precisely what compounding pharmacists are trained to do. I would thus suggest that you consult with a compounding pharmacist.

A compounding pharmacist will compound a medicine with – say – a 95% potency which you can take for a period of time. If there are no side effects, the potency will gradually be reduced over time – little by little – until you need take none of the medicine. this process may take as long as a year or two. If there are reactions to a reduced potency. Your pharmacist  will increase the dosage, then reduce it more gradually. Compounding pharmacists work closely with doctors as they change the potency of medications for patients.

In summary, you cannot go cold turkey and you cannot get off of the medication within a week. It takes time and patience to wean yourself but it can be done. I suggest you find a compounding pharmacist in your local area and get a consultation.

Robert Rodgers, Ph.D.
Founder 2004
Parkinsons Recovery
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me

Sinemet versus Fava Beans

I have a question about Sinemet versus fava beans. What’s the bottom line? Is it that fava’s are cheaper than Sinemet, which is not an problem in London since we have free prescriptions. Or more excitingly do fava’s lead to less risk of addiction?  Having ploughed through the majority of Janice Walton-Hadlock’s treatise on the horrific risks one can run in giving up L Dopa, addiction is my number one fear if I put myself on the fava road to Recovery.

Robert

As for the choice between taking fava beans or Sinemet … What is best? Of course, the decision depends on the individual in all cases. Some people have told me that Sinemet has saved their lives and given them hope. Others have said the same thing about fava beans and mucuna.

As you note, a challenge with any prescription medication is of course the side effects. There is also the long term possibility that the body will become addicted to a prescription medication. Once you start taking it, it is very difficult to stop.

Fava beans are also not exempt from risks. Some people are allergic to them. There is also a contra-indication for anyone who is taking an MAOI inhibitor (usually for depression).

Clearly, it is not the case that one choice is obviously better than another. It depends on a number of factors that can interact in very complicated ways.

There is an energetic difference between fava beans and Sinemet. When grown in a natural environment, the energetic charge of fava beans (or any food for that matter) can exude a very high frequency, giving your body quite a “charge” so to speak (unless you are allergic to the fava beans of course). Because fava beans are a natural food, the body is less likely to react negatively with side effects.

Any prescription drug is a synthetic. Medications usually convey a combination of frequencies to the tissues of the body that transmit conflicting signals. This of course is why side effects are experienced by some people.

Below are answers that Aunt Bean gives to questions about fava beans.

1. How did you come to try fava beans as therapy for Parkinson’s disease?

I started searching books for possible natural treatments for Parkinson’s disease in January 2009. Came across a book “Green Pharmacy” by James A. Duke PhD. He spoke of favas for Parkinson’s disease & that started the ball rolling…lots of research and a search for seeds to plant. I am an organic gardener and am fascinated with herbs and natural medicine … so this was a new challenge for me.

2. Why are fava beans supposed to give relief from PD symptoms?

The whole aerial plant contains l-dopa. Especially, the immature green pods. Since it is a natural form of l-dopa, the body recognizes & utilizes it very efficiently. Part of this is because it is a whole food, not a synthetic, man made form … just God given.

3. How have fava beans helped you and your friend?

My friend takes a small amount of sinemet and a couple of beans at medication times. The favas are supplying most of her l-dopa. This seems to be giving her longer “on” times. Taking less sinemet seems to mean less withdrawal time from sinemet. She tries to take all of her sinemet before lunch time and then supplement in the afternoon with bean products dries bean chips/bean cookies/tincture, etc.

Personally, I am not on any pharmaceuticals for PD, and just taking a few drops of tincture when I feel PD symptoms coming on, is enough to let me get through the day symptom free.

4. Can everyone use fava beans?

No. Some people have a genetic condition called favism. People with favism have an deficiency that makes it very dangerous to use favas…consumption can be fatal. There is a simple blood test called a G6PD which detects if you have this condition and should not use fava beans. The test cost me $65. and was well worth it.

My personal preference is always to try the natural therapies first. If they fail, then resort to the synthetic alternatives. There is a good chance the body will be better able to assimilate the therapy if it is natural.

Of all the Parkinson’s drugs, my interviews suggest that Sinemet seems to prove the most useful to people. There is certainly no reason to rule out any option that is available!

Robert Rodgers, Ph.D.
Founder 2004
Parkinsons Recovery

 

Side Effects of Parkinson’s Medications

Writing for my partner, H, 55, who was diagnosed with PD about 6 yrs ago.  Went on Sinemet last Sept when his body went rigid.  I “re-met” him in October and  immediately began researching alternatives.

H asked me to move in last Jan to assist with his care.  Since then, we have both turned our eating and exercise habits around 360*, his esp from the comfort of a steady diet of Coke, cookies and pizza to Dr. Wahl’s suggestions, tons of greens and veggies, no sugar/no wheat/little dairy.   

Exercise has increased to nearly daily walks, up to 4 mi, though it requires all his concentration to keep his right foot from dragging.

Body work — foot holding and gentle massage, Bowen as best I can understand it from books (no local practitioner).

All of this seemed to have a positive effect on his symptoms, several weeks with many good tremor-free days, mood elevated and better sleep until a few days ago when his tremors became suddenly more violent and muscles knotted again.   The massage gives him relief from the tremors for a few hours.

Is it possible that the 4 Sinemet he’s been taking daily might now be causing the same  symptoms they were supposed to help?

Nancy

Response:

I extracted the following information on side effects for Sinemet, a Parkinson’s medication, from www.drugs.com which is quoted below. There is quite a bit more information on the website you may also want to study.

Seek medical attention right away if any of these SEVERE side effects occur when using Sinemet”  

“Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; blood in vomit; chest pain; confusion; depression; fast or irregular heartbeat; fever; hallucinations; mental or mood changes; muscle pain or unusual stiffness; new or increased involuntary movements; severe abdominal pain; severe light headedness or fainting; sore throat; thoughts of suicide; unexplained fever or sweating; unusual bruising or bleeding; unusual or painful movements or spasms of the face, eyelids, mouth, tongue, arms, hands, or legs; vision changes (blurred or double vision); yellowing of the skin or eyes.”

“Nervous system effects occur in as many as 50% of treated patients on long-term therapy and include involuntary movements and mental status changes most frequently. The types of involuntary movements due to levodopa have been characterized as choreiform, dystonic and dyskinetic. Fluctuations in motor function occur frequently and often increase as the duration of therapy increases.”

“This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects.”

Response

My reading of the above side effects suggests that the answer to your question is yes – it is possible that the medication might be causing the same symptoms they were developed to help. Of course we do not know whether this is happening in your partner’s case.

The reason the FDA is involved in regulating prescription medications is to insure that the side effects are well documented.  As you will be able to see from a review of the side effects that are reported in the drugs.com website, the documentation on possible outcomes is exhaustive.

It is important to keep in  mind that everyone’s body is different. There will be a wide variety of reactions to any medication – some good and some adverse. My research reveals that Sinemet does provide relief for some people, but for other people it can cause side effects that can be worse than the symptoms they were supposed to address. This is really not that different from using any prescription medication regardless of the reason for its use.

It would be a good idea at this point to get a follow-up consultation with your doctor who will be in a position to evaluate what is really happening here and possibly suggest alternative courses of treatment.

Robert Rodgers, Ph.D.
Pioneers of Recovery’
http://www.pioneersofrecovery.com

Little Appetite Since Starting to Use Sinemet

I have had “diagnosed” Parkinson’s for about 5 years. I have been on Sinemet for about one year. I have had trouble keeping weight on. In fact I have lost about 13 pounds, probably due to the fact that I have had little appetite since starting to use Sinemet.

Also, I often get “stomach aches” after eating and have to lie down. I can’t pinpoint any particular food that causes this distress. Have you come across this situation in your very many conversations with people who have Parkinson?  

Thank you so much for your help.  

Sydelle

Response:

Everyone responds differently to medications. Each body is uniquely configured. That is what makes each person so very special.

Sinemet is certainly at the top of the list in terms of preferred medications to treat the symptoms of Parkinson’s and it has been shown to help many people. My research reveals it is not necessarily a good solution for everyone.

You ask if I have come across a situation similar to yours in my research. Yes, some people are unable to tolerate Sinemet. It would be very advisable to discuss the symptoms you are experiencing with your neurologist as soon as possible. They are the experts on prescription medications that can be taken to address the various symptoms of Parkinsons.

And, of course they are the individuals who are qualified and trained to help you solve this problem. Neurologists attended school for years to learn how to help people just like you who have experienced the side effects of medications.

Since the appetite and digestive issues began after starting the medication, my guess is that these symptoms are likely due to the medication. Your doctor could determine this for certain.

The FDA does a good job of identifying and publicizing all possible side effects from medications. Below is a short list of side effects from Sinemet which I extracted from a search on the internet. It is a good idea to do your own search as well:

Side effects of Sinemet May Be Reasons for Little Appetite Since Starting to Use Sinemet

Confusion; constipation; diarrhea; dizziness; drowsiness; dry mouth; headache; increased sweating; loss of appetite; nausea; taste changes; trouble sleeping; upset stomach; urinary tract infection; vomiting.

Gastrointestinal

Exacerbation of preexisting ulcer disease with severe upper gastrointestinal bleeding has been reported.

Gastrointestinal side effects including nausea and vomiting are the most common adverse gastrointestinal effects of levodopa. Anorexia and, rarely, gastrointestinal hemorrhage have been reported.

As you can see – the symptoms you currently experience are contained in the listing of some possible side effects. Your doctor is the best resource to solve this problem.

My research has revealed that some people supplement their prescription medications with natural sources of dopamine. One such source is discussed on the fava bean website:

www.favabeans.parkinsonsrecovery.com.

Aunt Bean describes in detail preparation of a fava bean tincture that makes it possible for a suppression of her Parkinsons symptoms. –

In summary, it appears as though your body is telling you that this particular treatment option may not be the best for your body.  Discuss the problem with your doctor and explore other options with their assistance. If you decide to begin making a natural source of dopamine as Aunt Bean does, you will need to work very closely with your doctor. While fava beans and Mucuna are natural sources of dopamine, they are still medications which will influence the effectiveness of whatever other medications you may decide to take after consulting with your doctor.

Robert Rodgers, Ph.D.
Founder 2004
Parkinsons Recovery
Pioneers of Recovery

Mucuna

I recently started taking NOW brand Mucuna (120mg LDopa) along with my 1/2 Sinemet tablet in 4-hour intervals. Its been only 3 weeks, but I can feel the Mucuna working, even with the Sinemet dosage halved! I also ordered ZANDOPA from India. Can you comment on these 2 products? 

Thanks.

Javier

It is wonderful to hear that the source of mucuna (which is a natural source of dopamine) which you have discovered seems to be helping significantly. Hooray! From interviews I have done with herbalists, there are few, if any, commercial sources of high quality Mucuna that are available.

Andrew Bentley, a herbalist who was featured in the 2009 edition of Pioneers of Recovery, reports that he does not prescribe Mucuna for his patients because he is unable to find a supply that is reliable. What he looks for is Mucuna that is grown in the wild which he has been unable to find anywhere in the world.

I have even had calls from some people who report that their supply of Mucuna had been working beautifully for them until they received a re- shipment – which fizzled. As you can see, reports are scattered all over the place.

I do not have any recommendations for a reliable source of Mucuna for these reasons. If sounds like your source may be a goldmine. I hope it continues to be useful.

A companion source of dopamine can be derived from fava bean plants.  Aunt Bean offers instructions on how to make their own dopamine at home from the sprouts of fava beans (or the tips if you have a garden). Her homemade tincture offers wonderful relief from her own symptoms of Parkinsons. Claim a free handbook that describes how to make the tincture on the Parkinsons Recovery Fava bean website:
https://www.favabeans.parkinsonsrecovery.com

I do not have any specific information about the medicine you ordered from India, though I am certain it would depend on the specific source.

Robert Rodgers, Ph.D.
Pioneers of Recovery
Pioneers of Recovery

Sinemet Titration

Lexie forwarded the progress report below and gave me permission to post it. Lexie is one of the 11 individuals who contributed to Pioneers of Recovery which was just released last week.
Robert Rodgers, Ph.D.
Parkinsons Recovery
Because of LDN, I have now titrated off of ALL of my ‘Sinemet – not even using that very occasional dose when I feel I might need it for a very long day, etc.  Now, when I have a foot tremor, I refuse to let my body go there and I just consciously “stop” the tremor and it is working! 

 

Wishing you and yours a beautiful Thanksgiving Holiday!  Thank you for all that you do to give people with PD hope that they can and will get well if “they choose to” and if they do the work that it takes.

 

Lexie 

Is Sinemet necessary for Recovery from Parkinson’s

Is Sinemet necessary for Recovery from Parkinson’s? John Coleman, ND mentioned in his book Stop Parkin’ and Start Livin’ that Aqua Hydration Formulas (www.aquas.us) comprise 60% of the therapy, while Bowen therapy 25%.

What makes up the remaining 15%? Does Sinemet (or herbal like Mucuna) fit into it? If so, does it go to say that we cannot recover from Parkinson’s without including Sinemet in the regime?

Thank you,

Arsenio

Dr. John Coleman ND has offered the fascinating estimates you note above based on his personal experience with recovery and with treating others with Parkinsons in his capacity as a naturopath doctor. Simply summarized, his experience is that when the body is properly hydrated and trauma is released using Bowen therapy, the body is in a position to heal itself. Better hydration is of course also plays a critical role in detoxing heavy metals and pesticides from the tissues of the body which have a clear and direct impact on symptoms.

In my conversations with many people who are on the road to recovery, some have an immediate, positive response from beginning to take the Aquas homeopathic remedy designed to hydrate the body. Other people must continue taking Aquas for several months before relief is detected. Others see improvement, but not in the range of the 60% that John reports. And of course a few do not observe any detectable result.

The bottom line for all therapies is this: They work beautifully and profoundly for some people, but not others. I believe the underlying factors that cause the symptoms and multifaceted and vary considerably from person to person.

Permit me to extend my explanation further by reference to Sinemet (which must be prescribed by a neurologist) or mucuna or fava beans which are natural sources of dopamine and do not require a doctor’s prescription. Some people report that the quality of their lives improves markedly after taking either Sinemet or fava beans or mucuna. Other people report trying them but see no positive impact. Some people who take Sinemet feel worse from the side effects.

In the end, it depends on the underlying reasons for the person’s symptoms and on the body’s response to whatever treatment is being tendered.

In specific response to your question,

Is Sinemet Necessary for Recovery from Parkinson’s

The answer for some people is no and for other people it is yes. Believe me when I say I do not mean to waffle here. It is the simple truth. I interviewed people in Pioneers of Recovery who took no Sinemet but are symptom free today. Other people take dopamine supplements of one form or another and do better on them than off.

The good news of the day is that anything is possible. As I document on this blog and in my books such as Road to Recovery from Parkinson’s Disease, there are many therapies that help people get sustained relief from their symptoms. Sinemet and the other dopamine enhancing supplements provide a source of relief, but they are only one among many other options.

In conclusion, the factors that contribute to the symptoms are extremely complex. If you hold the belief that a rigid formula will help you recover, I suspect the chances are pretty good that you will be disappointed with the outcome. There are certainly some people who might lead high quality lives from taking [Aquas + Bowen therapy + Sinemet], but that happens to be the solution set that works well for them. It may do little for you.

Dr. Coleman, ND never actually took Sinemet himself, but is symptom free today. Depending on personal circumstances, he does prescribe Sinemet to some of his patients.

I believe Parkinson’s is the most complex and multidimensional illness that exists in our world today. The answer to your question Is Sinemet necessary for Recovery from Parkinson’s is: it depends. Commit to a personal path of recovery and you will begin to feel better with each passing day. Chances are good that your solution set will be unique to your needs and the requirements of your body.

Robert Rodgers, Ph.D.
Parkinsons Recovery
Road to Recovery from Parkinsons Disease
Pioneers of Recovery

Five Steps to Recovery

Sinemet for Parkinsons

My question, I guess, is in finding a balance with Sinemet for Parkinsons.  I was  dx with PD in 1998 and in 2000 had a horrible bout with head/neck cancer after which the PD drugs nearly killed me. But I recovered and sought PD Recovery as well. But back in 2005 when I found the Parkinson’s Recovery program I was warned, do not attempt to recover from PD if you have EVER taken Sinemet, which I now have for 11 years.

I am still doing whatever alternative Rx I can, and now am in the position of being under consideration for Deep Brain Stimulation. I also have 6 more years of long term disability insurance which I have to justify with an annual exam and report. So my question is, where do I start? Where do I find guidance that doesn’t cost too much? My husband is retired and I am living on disability.

Diane

Response

I have interviewed many members of my audience who elected to take medications while focusing on bringing their body back into balance. They identify the cause of their symptoms and treating it with natural therapies and methods. When it comes to Sinemet and Parkinsons, the medications can be a life safer for some people.  You have to be able to feel reasonably well to take the actions needed to recover.

The one factor that will spin us all into a state of imbalance is negative thought forms. Your question actually centers on thought forms. To rephrase your your question:

How can I maintain positive thoughts about my recovery?

That of course is the challenge for everybody in a body. We all carry negative thoughts in our heads moment to moment. To illustrate what we all do to ourselves, you write in your question:

“I was warned do not attempt to recover from PD…”

Hum … you have encoded that warning into the cellular structure of your brain. Permit me to add a few additional “warnings” to illustrate how harmful this thinking is to your body:

“I was warned do not attempt to recover from depression.”

“I was warned do not attempt to recover from the flu.”

“I was warned do not attempt to recover from grief.”

Recovery is possible only when we know it in our heads and our hearts. Negative thoughts obstruct the process. My book Five Steps to Recovery helps transform negative thoughts that are not in you best and highest good which are impeding any and all attempts at recovery.

You ask, where do I find guidance? The answer is quite simple: listen to your own guidance. Your body knows the answers. We all get guidance – intuitive hits – about what we need to do for ourselves. Act on what you know from your heart that you need to do for yourself. Guidance is free.

I have identified more than 100 options and therapies give people with Parkinsons significant relief from their symptoms. In summary, you do not have to spend a cent to begin recovering today. Do that by challenging your negative thinking moment to moment.

Many blessings,

Robert Rodgers, Ph.D.
Founder 2004
Parkinsons Recovery