MAO-b inhibitors are capable of slowing down the progression of Pd. No other type of medication can, to the best of my knowledge, achieve this. As a non-medical person with Pd, I would like to know why this is not the best way to deal with Pd?
Why do very few doctors prescribe a m... - Parkinson's Movement
Could it be that MAO-b inhibitors are a more recent innovation and do not carry the same weight yet as the so called 'gold standard' Levadopa or could there be another reason?
It has been on the market for over 21 years. It is the only medication I took for ten years, and did the job for me verry well. The only other reason that I can think of, which is unthinkable, is that doctors do not want us to get better! That sends shivers down my spine!
Maybe by the time people get diagnosed it is far enough along that the immediate relief from the carbo/levo is needed? It took my azilect several months to kick in, and I am very early stage. I must say though that I am holding good on it though. It has been a miracle drug for me.
I had already had symptoms for 29 years, when I was diagnosed. How far along does one have to be? I had to give up my job, because I was unable to carry on. MAO-b inhibitors don't appear to act quickly, as they do not mask any symptoms. However, it is better to start reversing the symptoms than feeling better for a few hours, while getting progressively worse!
John, what symptoms does it address. Although it was tremors that brought me to the neurologist's office my main complaints are difficulty sleeping and constipation. I can live with what tremors I have now. Does L-Dopa address those?
Hi Racer. I have never been very sure about what symptoms L-Dopa medication is supposed to alleviate. I suspect that the main symptom it is supposed to alleviate, albeit for a short period, is resting tremor. Why anybody needs to take medication for that I do not know. It is not painful, it is not damaging in any way. It is unsightly, and many people are far more self-conscious than I am, and would go to great lengths to hide that problem. I am aware that the moment the affected limb is put into use, the tremor disappears. Voila! Clench the fist and you have no tremor! That is being altruistic, I know, but think about it! If you have a resting tremor and it worries you, because it is unsightly, then concentrate on holding the fist clenched, when you are in other people's company. I have seen patients sit on the hand that shakes, or put it in a pocket, but why take a tablet? L-Dopa is also supposed to relieve the rigidity, but is that the same as relaxing? I am not able to answer these questions because I don't have a resting tremor and I don't have a problem with relaxing my limbs and my core muscles. It is not easy to learn how to relax but it can be done.
John, I agree with you. I have a resting tremor which is completely gone when I put the one hand to any use, even threading a needle but it's the non-motor symptoms which bother me, insomnia and because I am mentally so preoccupied with my newly diagnosed disease and worried about the future has taken away from my concentration. So my efforts are at slowing the progress and preserving what I have. I've been to two major medical facilities, Johns Hopkins and another and both concur with my desire not to take medication. I have, However, been taking Mecuna Pruriens with no dramatic result .... do you think it might be harmful in that by adding dopamine to my system it might be further deteriorating or reducing natural dopamine production? As an informed lay person and fellow sufferer I do respect your input.
Hi Racer. What non-motor symptoms worry you the most? If it is insomnia, I have suffered with this since 1974. For well over 30 years my average sleep per night was less than 4 hours. I had to accept that this was my lot in life and I did not let it worry me. When I woke up, during the night, mainly around 3-00am, I decided to get up and work on my computer, or else to read a book in bed. I changed the lights in our bedroom to ensure that neither of us could see the light of the other. The light shone away from our partner, and although it illuminated the room to a certain extent, it was not direct light and it was not invasive. When I got tired of reading, I often went back to sleep, but not for very long. I intended to get a nap in the afternoon, but work pressure made that a pipe-dream. Try not to let it get you down! As far as the constipation was concerned, I made it a habit, as much as was possible, to think about the need to defecate, at a certain time each day. I also accepted that my body was not giving me the signal that I needed to defecate, even though it was ready to do so. I found that massaging the anus with some toilet paper or some vaseline, while I pushed down with the stomach muscles, I was able to get the floor muscles to relax and I was often able to pass the stool, which was invariably very hard. It sounds a bit extreme, but we have to do what we have to do!
Thank you, John. As my mother said, "Ask not the doctor, ask the patient."
Hi Racer. I appreciate the fact that doctors study for seven years and neurologists study for several more years and it must be quite annoying for patients to come along and tell the doctors what medication they should prescribe. However! Collectively, we Pd patients have many years of experience with Pd, and we talk to one another and we hear of all sorts of incidents of over-medication and miss-diagnoses. We have to assume therefore that doctors and neurologists are not foolproof. They do make mistakes and they do have favorite ways of treating medical conditions. We are the people who pay the bills and we are the people who have to suffer with these problems. If patients were able to claim back for the cost of medications that do not work, or operations that go wrong or do not successfully deal with the original problem, then I feel that lots of dissatisfaction on our part would disappear. But I can't see that happening. If they were to call in a plumber to fix a water leak and he did not do it properly, then they would have no compunction in calling him back to rectify the problem, without any further payment. Why should the one have recourse and not the other? There are a lot of practices that need to be looked into, with a powerful microscope, but are we the ones to bring this about?
I think there are many reasons John. To start the research to date does not support your claim. Also some countries (eg NZ) do not have Azilect on their list approved for subsidy.
What research are you referring to? The research I have seen, produced by Teva does show that it can slow down the progression. I also saw, many years ago, research carried out by the manufacturers of Eldepryl, showing the same results. Each of these researches covered a seven year period.
Oh dear just lost my reply! I will post a couple of comments in the meantime.
Adagio trial results - the trial sponsored by Teva the drug company who makes Azilect, are controversial.
Eg: the FDA did not support the findings.
WASHINGTON -- A federal health panel unanimously voted Monday that a drug for Parkinson's disease from Teva Pharmaceuticals has not been shown to slow progress of the debilitating neurological disease.
Apologies for cut and paste but this is one doctor's comment regarding prescribing MAOB's.
.... rasagiline is neuroprotective in the laboratory . . .
Numerous ..... studies have documented evidence of neuroprotective effects with rasagiline, although one might question whether these models truly replicate the disease process. Arguably, they support the initial interpretation of these clinical trials as demonstrating a disease-modifying effect. However, nearly all the dopamine-active drugs used to treat PD have similarly been reported to demonstrate ..... evidence of neuroprotective influences, including all the dopamine agonists and even levodopa. In fact, it has been proposed that early treatment with any dopaminergic drug may have a long-term favorable effect in PD.
Practical problems with prescribing rasagiline in clinical practice.
One might argue that rasagiline should be prescribed to all patients with PD on the chance that it might be neuroprotective (hedging one's bets, so to speak). However, balanced against this are considerations of potential drug interactions and expense.
The package insert lists numerous drugs that are contraindicated with rasagiline, including most antidepressants. Many of the listed drugs are likely to be considered in patients with PD. At the very least, this has medical–legal implications, whereby the drug combination might well be blamed for a variety of coincidental problems. A second issue is the considerable expense of rasagiline. Retail price is approximately $10 per tablet, not inconsequential even with pharmaceutical plans requiring copayments.
Twenty years ago, selegiline was prescribed to nearly all patients with PD because of faith in or hope for a possible neuroprotective effect. Now, the very similar drug, rasagiline, is being touted for the same purpose. However, like the earlier DATATOP trial assessing a possible selegiline neuroprotective effect, the current TEMPO and ADAGIO investigations raise more questions than provide definitive answers. This delayed-start study design came under the scrutiny of the American Academy of Neurology Quality Standard Subcommittee after the TEMPO trial and they concluded then that “no treatment has been shown to be neuroprotective.” This still appears to be an appropriate conclusion.
Being a 'normal' human being, I fall pray to lots of unverified information, which I often pass on to others. However! There has always been an underlying belief in what I have been passing on.
My experience of Pd has been very unusual.
My first symptom showed up in 1963, being the sudden inability to throw a ball. That was followed by constipation, which was followed by depression, followed by insomnia etc etc. Only in 1992, when I started to shuffle, did my doctor send me to a physician, who sent me to a neurologist, who diagnosed Pd. He prescribed a monotherapy of Eldepryl. At that stage I stopped taking all the other drugs I had been taking, for all the previous symptoms.
I had also been taking blood pressure tablets at the time of diagnosis, which I have continued to take.
Other than doing regular energetic exercise and getting rid of the major causes of stress in my life, I only took Eldepryl, except for three months in 2002, when my neurlogist said I should start taking sinamet.
Because I had got most of my movement symptoms under control, at that time, and because the sinamet did nothing for me, I stopped taking it, after three months. I also stopped going to that neurologist, or any others, since then, for my Pd.
In 2003, after writing a book about my experiences, I visited another neurologist, because in my book I said that, 'Nobody would ever know that I still have Pd", and I wanted to put that to the test. I told him about my book and asked him if he thought I had Pd? His response was one of anger! He sid I did not have Pd, Therefore I never had Pd, because there is no cure for pd. What I had was Parkinsonism, whatever taht means, and he told me to stop taking the Eldepryl!
He also said that I was wasting his time, even though I paid his not insignificant fee. .
I stopped taking the Eldepryl and have been off any Pd medication ever since.
It took me over a year to settle down, after ceasing the medication, and since then, as long as I do my walking and avoid stress, I live a perfectly normal life! I still have other autonomic nervous system problems, but I have learned to deal with them in my usual fashion.
I know that "One swallow doth not a summer make" But there is a lot to be learned from my experience!
So two neurologists and two different diagnoses, which one to believe?
There are many conditions causing Parkinson like symptoms but that does not mean a person has Parkinsons Disease.
Essential tremor is one such condition. A person who does NOT respond to Sinimet is very unlikely to have Parkinsons Disease. Giving sinimet and seeing if the person responds to it is one important way to diagnose Parkinsons. It is hard to diagnose and there are many wrong diagnosis made.
I am aware of the sinamet test, as I mentioned in my book ten years ago. What I also mentioned was that I never had a resting tremour, but although I was still quite rigid, after those ten years of taking Eldepryl, I had learned how to move much better and had no movement problems. What symptom could the sinamet have improved?
You mentioned taking a blood pressure medication. You know, of course, that there is much talk that Isradipine, a blood pressure medicine may be neuroprotective and there are several studies planned in the future. I don't really see the harm in taking Isradipine even for those of us with normal to low pressure. What do you think? I respect your opinion because you are taking the route which I hope to take, no meds, exercise and involvement.
Hi Racer. I can't comment on any medications, because I am not qualified to do so. I can say that if your doctor is happy to prescribe isradipine and you are happy to take it, then there is no problem. I prefer to take as little medication as possible, not only is it expensive, it is also toxic.
John, I notice you said you take blood pressure medication. Have you heard anything about the possibility that Isradipine, a blood pressure medication has been shown to slow the progression of PD in laboratory studies on rats and there are currently beginning on human trials? It makes a little bit of sense to me, reducing blood pressure for slowing progression of a disease process. Personally I have low to normal BP so I don't know whether it would apply to me. I'm full of questions today. Thank you in advance for response.
What is a MAO-b inhibitor?
MAO-b inhibitors stop the breakdown of dopamine in the brain. This is a natural process, wich takes plavce all the time. Why break down dopamine, when we do not have enough of it?
Thanks. Are you taking an MAO-b inhibitor?
NO! I stopped needing to take any Pd medication in 2003. Please don't stop your medication unless you are, like me, more or less movement symptom free. Discuss it with your doctor first! Read my story before you do anything!
will Fast Walking suffice to stop my tremors w/o taking azilect - MAO-b Inhibitor ? How many years before substantial results?
Hi Royprop. The only answer I can give you is that on two occasions, during the eight years I took Eldepryl (Selegiline), which is a similar medication to Azilect, I took myself off the meds for a period of 6 weeks then had to go back onto them again because the symptoms returned each time to an unacceptable level. It is unfortunately a long process.
If the cost is the problem, I know that Teva Pharmaceuticals have a program wherein they give the medication FREE to people who genuinely cannot afford it.
Do these same countries support medications such as Sinemet, Madopar, DA's and the like? If so, they do not always work for everybody as you will know. No drug works universally, does it? We should at least have a choice. Could it be that cost is a factor in these countries?
I only know a little about the NZ system Norton. I agree that choice is so important for PD patients. Yes NZ restricts on cost as one factor, there are others. This isnt aimed at one particular condition but is general throughout the health system there.
There is one agency which negotiates drug purchase on behalf of the national health system and they do an excellent job at getting medicines at the best price. They would say they are there to balance fairness with what the country (4 million people) can afford. You usually get only one choice ( eg one agonist). The available meds for PD are limited and I sometimes think those in UK don't realise how lucky they are!
I don't know if NZ has been able to achieve lower medicine costs, with their system. I somehow doubt it! If that is so, then they are not helping their citizens, are they?
Yes I believe they have got meds at probably the best price of any country. They have been so successful that it has angered the drug companies who have used their government to put pressure on NZ.
This is how it was reported late last year,
"Pharmac, New Zealand's Pharmaceutical Management Agency, has been very successful in ensuring that New Zealanders have access to essential medicines at affordable prices.
It does this through a number of highly effective mechanisms that allow it to source prescription medicines at lower prices than most other OECD countries.
So it is hardly surprising that the US pharmaceutical industry has long complained about the effects on its profits, and has targeted Pharmac's effective processes.
Follow this link to read the remainder of the article
As NZers are paying for all drugs used through their taxation system I think they appreciate that there is a cap on spending.
I find the thought that the medical profession doesn't want people to get better is as absurd as anything I've seen before. Another conspiracy theory that makes no sense. Why? Certainly not for thec money, most drugs are now generic. It isn't exactly a goldmine for the medical profession. The reason levedopa isn't the first medication is because of the long term side eff, by delaying levedopa you may hold off the dyskinesia for a while. Levedopa is great for diagnosis. But the other drugs MAY BE better for initial treatment. By the way walking does not reverse Pd, it may lessen or slow symptoms but it does not reverse it, and for many a brisk walk is getting to the toilet before you piss yourself.
I share your view. I did not say that I thought this! As I said, it sends shivers down my spine. My doctors and I get on very well with each other. Dyskinesia is not, to the best of my knowledge, a Pd symptom. It is, again to the best of my knowledge, caused by too much dopamine or maybe levodopa in the brain.
If you disagree with my claim that walking can slow down or even reverse Pd then refer to the 2006 1st World Parkinson's Congress held in Washington, at which Drs Beth Fisher and Michael Zigmmond told the audience the results of extensive scientific double blind studies, which proved this to be the case.
..... refer to the 2006 1st World Parkinson's Congress held in Washington, at which Drs Beth Fisher and Michael Zigmmond told the audience the results of extensive scientific double blind studies, which proved this to be the case."
That is so untrue.. no such proof was shown at WPC 1 that fast walking reverses symptoms. It makes a good story though.
The MAO-B inhibitors selegiline (Eldepryl®) and Rasagaline (Azilect) enhances the effect of levodopa: By slowing down the breakdown of dopamine. In the EU the popular first drug of choice is to start with Levedopa. Eveually as medicaions stop working the path usually leads to Levedopa in the end
Selegiline is available in two formulations:
•Standard oral—converted into an amphetamine like by-product, which may contribute to side effects of jitteriness and confusion.
•Orally-disintegrating (Zelpar®) – preferred form for people with PD who have difficulty swallowing.
I missed this response of yours. As you know, I was only ever prescribed an MAO-b inhitor, other than for 3 months, when I took sinamet.
Our bodies regularly break down dopamine, even though we have a shortage of it. That does not make sense to me as a non-medical person!
So, surely, taking an MAO-b inhibitor is the best way to treat Pd. If that does not work, then start ALSO taking levodopa. The affets of taking an MAO-b inhibitor take several months to be able to notice a general improvement in your quality of life. So, don't stop taking it after a few weeks!
MAO-b inhibitors work by blocking the chemical that chews up the" dopamine" in our bodies monoamine oxidase. For some people it's all they need for awhile. When the PD progresses and dopamine levels drop off to a point, it then becomes time to introduce the Levodopa to mimic the dopamine loss. The dopamine levels are just too decrease to maintain some resemblence of a quality everyday life because it's being brokendown and utilizwd too fast at the lower level.
So your right for some MAO-b inhibitors are the way to go for as long as one can and for some people.
Once levodopa reaches the level where it balances to suplement the dopamine loss couple with the MAO-b for longer sustaining of the benefical levodopa effects your back on track. This is why it takes monitoring and adjusting of dosage by your doctor to maintain that fine balnce between dopamine loss and counter action with medication as you know sometimes take a few times since there no exact way of telling with every individual being different the balance of dosage verses dopamine loss.
There is a website:
That may be interesting to some people to read.
I have had problems with my hard drive and was unable to respond to you earlier.
In my case, the combination of exercise, which produces GDNF in my brain, which repairs damaged brain cells; my dopamine production has been able to increase, as against decreasing, and after ten years of taking Eldepryl, I was able to stop taking any Pd medication! I have stayed like that for the past ten years, medication free, while still continuing to do my exercise, regularly. My non-motor symptoms have continued to bug me, but I am able to overcome all the motor nervous system symptoms very well.
Aren't there dietary restrictions with MAO-B inhibitors like chocolate and cheese? My neuro says not to worry. But I did not succeed in titrating to azilect . Gave me big dyskinesia. Now I can barely walk half the time. I need exercise. Losing muscle.
The only dietary restrictions I can remember seeing are for any foods containing Tyramine. If you Google this word you will get all the info.
The breakdown of Tyramine in the body also gets inhibited, which causes the build-up of Tyromine to dangerous levels. This could cause dangerously high blood pressure levels. I am not a doctor, so talk to your doctor about it.
For those who are reluctant to take prescription drugs, it is said that the following herbs have varying strengths of MAO-B inhibition: cat's claw, cordyceps, Fo-ti, aloe vera and quercetin.
I can't comment on this, but would suggest that you investigate it properly.
I am not recommending anything. I am simply maknig some suggestions as to where research might begin. I think anyone who is seriously interested in herbs spends a great deal of time doing research. Did you know that dopamine was "discovered" by a Big Pharma firm that wanted to learn why in India there was so much success in treating Parkinson's. The mucuna bean is the answer and Big Pharma set about trying to identify the magic chemical in the mucuna bean. So they "discovered" dopamine and patented their own version. I have read that the toxic long-term effects of synthetic dopamine come on sooner and are worse than those from natural dopamine. I certainly agree with you about doing research. My doctor recommended that I take Azilect, and having read about its side effects, I set about trying to identify a natural source for MAO-B inhibition. I thought I would share the initial results of my research. In short, there are many leads and no reason to close your eyes and swallow whatever toxic chemical the doctor prescribes.
Have you Googled 'Mucuna Pruriens'?
Yes. There is plenty of information. This is just an example:
Mucuna pruriens in Parkinson's disease: a double blind clinical and pharmacological study.
Katzenschlager R, Evans A, Manson A, Patsalos PN, Ratnaraj N, Watt H, Timmermann L, Van der Giessen R, Lees AJ.
National Hospital for Neurology and Neurosurgery, London, UK.
The seed powder of the leguminous plant, Mucuna pruriens has long been used in traditional Ayurvedic Indian medicine for diseases including parkinsonism. We have assessed the clinical effects and levodopa (L-dopa) pharmacokinetics following two different doses of mucuna preparation and compared them with standard L-dopa/carbidopa (LD/CD).
Eight Parkinson's disease patients with a short duration L-dopa response and on period dyskinesias completed a randomised, controlled, double blind crossover trial. Patients were challenged with single doses of 200/50 mg LD/CD, and 15 and 30 g of mucuna preparation in randomised order at weekly intervals. L-dopa pharmacokinetics were determined, and Unified Parkinson's Disease Rating Scale and tapping speed were obtained at baseline and repeatedly during the 4 h following drug ingestion. Dyskinesias were assessed using modified AIMS and Goetz scales.
Compared with standard LD/CD, the 30 g mucuna preparation led to a considerably faster onset of effect (34.6 v 68.5 min; p = 0.021), reflected in shorter latencies to peak L-dopa plasma concentrations. Mean on time was 21.9% (37 min) longer with 30 g mucuna than with LD/CD (p = 0.021); peak L-dopa plasma concentrations were 110% higher and the area under the plasma concentration v time curve (area under curve) was 165.3% larger (p = 0.012). No significant differences in dyskinesias or tolerability occurred.
The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted.
I am impressed with this information. Have you dicussed this with your doctor? If so, what does he say?
My doctor, the neurologist, only knows about the officially recommended treatments for Parkinson's. When I tried to discuss mucuna beans with thim, he said that you cannot get L-dopa without a prescription. Then he went to his computer and looked up mucuna beans and was shocked. My GP doctor is a DO and is quite knowledgeable about alternative medicine. I discussed with her my refusal to take Azilect as recommended by the neurologist, and she said she would never urge me to take it because it is my decision. She said of my neurologist that he doesn't know anything except what he learned in school. This is why I consider that my health is my responsibility. Most doctors know nothing except how to parrot whatever is the official, accepted line of the medical industry in this country
Your attitude to health appeals to me. I do not want to place my health in the hands of someone else. By all means consult health professionals, but ultimately the direction we take is our responsibility. That helps to concentrate the mind.
You have hit the nail on the head! Our doctors are our chosen advisers, not our bosses. They do not pay for their mistakes, we do!
When they only charge for successful advice and operations, they will very quickly become more aware of their failings.
However! It is on our heads to see that we are well advised, when we go against our doctor's 'ORDERS".
When were you diagnosed? I am sorry you do not think that Azilect will do you any good. I am not selling medications of any sort, but I sincerely believe in MAO-b inhibitors. Don't blame the doctors for their attitudes, that is the way they were trained! Blame the system!
I was officially diagnosed with either Parkinson's disease or Parkinsonism about 2 or 3 years ago. I have a history of brain damage in a car accident and the doctor says that without this history he would definitely diagnose me with Parkinson's but he says that he cannot be sure with my history. Evidently, if your brain damage involved damage to the substantia nigra, then you have Parkinson's, but if there is no damage to this part of the brain, then you just have Parkinson's-like symptoms which are called Parkinsonism.
I feel sure that most of us suffer from brain damage, especially as children, when we fall and hurt our heads.
We cannot blame doctors for not being able to be more confidant about their diagnoses, as they cannot get into the brain to see what is going on. It is up to us patients to get to know our symptoms and see how best to deal with each symptom, if possible. If we have to rely entirely on another individual to tell us what to do, we risk having serious problems!
I find your post interesting and informative. May I ask how long you have been taking MP and at what dose per day?
Big pharma often isolates active ingredients in herbs and put out synthetic versions, but are they any more effective than the natural product?
I am reluctant to take any prescription medicines. I try to follow a healthy diet and exercise as much as I can. I am taking 1,200 mg of CoQ10 a day and lots of fish oil. I also take 600 mg of mucuna bean extract which supposedly contains 120ng of L-dopa. If you do any research on mucuna beans, they are also known as velvet beans. I read that Texas A&M university has a big project going on velvet beans in the hope that this might one day become the treatment of choice for Parkinson's, and it would thus provide a big boost for American agriculture.
I am sure Big Pharma would not like to see such a big boost for American agriculture because it would deprive them of a lot of money.
This is a very interesting article on two alternate remedies for Parkinso's, one of which was used by the Pope.
Hi Idq 1997
Which one of the alternate remedies did the Pope take? Mind you the old chap wasn't very well before he retired was he! I wonder what his Holyness's treatment regime was?
What I found very interesting from this debate is the the fact that Levadopa is used to establish if you do have Parkinsons Disease or Parkinsonism. I really never experienced the up's & the down times - in fact the only effect I believe I experienced from Levadopa was a very extreme case of amazing creativity in my art work (which I loved) & a very big increase in my sexual feelings (which I didn't love) it was very inconvenient! My consultant on hearing about the latter result decreased my Levadopa by half!
After 5 years on Levadopa I decided that it wasn't helping any & that I was feeling very ill. Most of the other medications that I was given to try - gave me what seemed terribly high blood pressure in my head & a burning red face, palpitations etc. With my consultants knowledge I decided I was going to give the Homeopathic route another try. This has been of limited benefit, but the smaller benefits are that I can always get advice & encouragement from the Homeopath, either on the phone or an appointment, very often with my daughter's help. . My daughter helps me in my interaction with him, collecting my Homeopathic treatments, keeping records of what to take and when. So times when I feel I cann't go on my daughter say's Andrew will help make you feel better. And then they discuss what action we will take. There's a lot more I could say about the benefits and the non benefits - but I'm tired now and my back aches, so another time.
I am going to try the Mucuna Pruriens
One other thing I would like to add is - that I wish that when I was diagnosed with Parkinson's that I had been given a list of positive things to do ie... exercise, positive thinking, getting physiotherapy etc etc & that I had not relied on medication to help me & that I had done more for myself'
Anyway jolly good discussion going on here - much appreciatted,
All good wishes Helen
I like your considered approach to events in your recent life. It makes sense. May I ask you, what percentage Ldopa does your 600mg of mucuna pruriens contain? Also, how much fish oil do you take especially in terms of EPA and DHA? Have you heard of Dr. Barry Sears of the Zone Diet and fish oil?
You mention eating a healthy diet. Diet is often overlooked, because many PwP concentrate on medications. What is your healthy diet please?
Re MOA-B inhibition of natural foods; have you investigated curcumin to see if it has these properties?
With respect to curcumin, I have relied greatly on what I read in a blog by John Schappi called Aging and Parkinson's and Me. Actually, today's blog is a long one all about research the Salk Foundation is doing on curcumin. You might want to read it.
Hi, I am interested in your reference to Mecuna Pruriens (sp) because while I have been diagnosed with PD early stage several months ago I have made it known that I prefer not to take meds and both medical centers I went to agreed to that course because my motor symptoms do not interfere yet. But I have been taking Mecuna Pruriens once a day in the a.m. and exercising. I know you are not a doctor but do you think there is any harm in this? Sometimes when you take a hormone or substance to replace something in your body it reduces your own body from creating that substance or even reduces that substance. What do you think? I have noticed a slight reduction in my already mild tremor but beer and aspirin already reduce it temporarily.
Hi Court. I do not remember talking about Mecuna Pruriens. I have read lots about it, but there has been no clear indication that it has any beneficial effects on the progression of Pd. There is always the placebo effect, which can be as high as 30% or more. In other words, if you believe that what you are taking will make you better, there is a good chance that it will make you better, even though it actually does nothing for you. I am not saying that Mecuna Pruriens is no good, I just feel that the evidence does not prove anything. Have you tried Googling MP?
I have taken Azilect for over two years. Initially it worked pretty well unless I was under a lot of stress. Now the tremors are getting worse again. My neuro added the neupro patch, but my blood pressure went up very high with it and I could not tell the patch had improved anything.
Azilect is very expensive but if you do not have insurance and make less than a certain amount each year you can get it free from the manufacturer. They will sent a it every three months to your doctor's office. This is what I had to do for over a year.
It also has many drug interactions which I keep tabs on and also watch what I eat. Otherwise, blood pressure issues can occur.
Have you not been told about Tyramine? If you take an MAO-b Inhibitor and you are having blood pressure problems, you should Google 'Tyramine', You will learn all the foods you should not eat.
I am not a doctor, but have learned this from many different Pd websites.
I have also been asked to remind everybody that everything I say on this website does not necessarily apply to everybody. None of us is alike. We all have different symptoms. Your doctor should know all about Tyramine.
The problem is that the breakdown of Tyramine is also inhibited, when we tale an MAO-b inhibitor like Azilect.
Yes, I am aware of Tyramine, was a former RN so try and keep up to date on what may interact with the Azilect.
My hubby was put on Azalect when he was first diagnosed. It cost us $200.00 a month and that was WITH very good insurance. He was also put on sinemet. We changed doctors and new doc took him off the Azalect (she said there was no poof it worked), she also is a doctor, that works at the University of Pittsburgh Medical Center. When we went to a Davis Phinney Victory Summit, Azalect was brought up, did it work or not? Most people there thought it worked. There is a lot of drug interactions with Azalect specially antidepressant, so that might be a reason for not taking it.. My husbands symptoms got a lot worse with his stroke, no one knows what is stroke and what is PD but I wish he had stayed on the Azalect. I think it is the person with PD who should decide if they take it or not, after they consider side effects, drug interaction and cost.
I empathise with you both. We do as we are told by our doctors, after all, they should know. But do they? Are they infallible? No! They will be the first to tell you they are not. At least, the the more intelligent among them will. We have to take charge of our own future, If we are unable to do this, then we have to take the consequences. It s a great pity, but it is as simple as that!
I swear by the combination of MAO-b inhibitors and energetic exercise. However! We also have to watch our stress levels and maintain a positive outlook on life. I am going to start another blog today on the subject of stress and the subject of Attitude!
WOW after reading all that Information my head hurts, but it, has done me good becuase last week i sorted out all my different pain kills to get rid of becuase none of them worked,and i feel so much better for it as i was drugged up all the time i have also cut down on my medication and i feel really good apart for my back pain.I have just bought a TREADMILL so its all systems go now as once i get used to , it, it will i, know help me in many ways becuase the weight is a CLIMBING FAST due to my lack of exercise, time to buy a new weighing machine also, the one i have now is past it sale by date i think.I have been feeling very very low just lately and i think some thing or someone has just given me a quick kick up the---you know what. There is a lot more i would like to say ,so for now i wish to all happy dreams (if your lucky) love to ALL BARBIE xx
If you look at another blog, How many Pd patients know that energetic walking can REVERSE PARKINSON'S DISEASE? Refer to 1st World Parkinson's Congress held in Washington.
You will see what can happen, if you embark on a proper exercise program. I mean REAL EXERCISE!
In speaking of MAO-B Inhibitors, I assume that you are referring to drugs like Selegiline, which in Europe is called Deprenyl, a drug much used for anti-aging, and depression as well as Parkinson's. In material I read on Deprenyl, it was said that it should NOT be taken in conjunction with l-dopa because symptoms of an overdose of dopamine might result. However I read that in this country, selegiline is commonly given with Sinemet. As I recall, John, you said that for many years you had used selegiline. Did you also take Sinemet, and what were the results?.
I took selegiline for ten years, with no other Pd meds, other than in 2002, when my neurologist advised me that I will be needing to take sinamet, as I had been on selegiline for a long time, and would be needing the sinamet. I took it for three months and becuase it did nothing for me, I stopped taking it.
I am aware that this could mean that I do not have Pd, as sinamet is often used as a test for Pd, but not always!
Contrary to what my neurologist said, my conditioon had improved so much that I later went off the selegiline completely, and have been off it ever since. Which of my symptoms could the sinamet have got rid of? I was moving very well, and able to walk for 5 miles in one hour. I was sleeping better than I had done for the previous thirty years. I had little constipation problems and no walking problems. So how would sinamet have helped me?
As it has been claimed that selegiline has been shown to be neuiroprotective and COULD POSSIBLY slow down Pd, and as I have been doing energetice walking since 1994, which has also been proven to produce GDNF in the brain and can therfore help to slow down the effects of Pd; it is possible and, in my opinion, highlt likely, that the two of them together have probably brought about the reversal of my Pd.
I still have Pd, or at least, most of the symptoms, I also have to tell you that I also cut out all the negative stress in my life and adopted a positive attitude towards my Pd. All in all, my health today, at the age of 78, is probably better than most people of my age. My quality of life is very good!
When you consider that my first symptom showed up in 1863, fifty years ago, that is an unusual story!
Wow - what a lot of information - but it is good to be aware of the plusses and minusses of what we do. I have recently bought the book 'Grain Brain' it recommends taking grains out of your diet - because they are not beneficial to your brain. I also bought John Peppers book (good book many a chuckle like been there - done that) where he talks about MAO -b inhibiters? so....
I have been thinking about asking my Neurogolist about getting Azilect prescribed as I am not on any PD medications at present, but my shakes and tremours are awful. Now on 'Grain Brains' diet information, you are going to be eating a lot more protien. SO I'm thinking Roasted Vegies and crumbled stilton on top etc etc ( stilton not mentioned in GB book) Then I believe I read in one of the previous posts/ or in the Parkinsons book guide on side effects of Azilect is not to eat foods containing Tyramine, which stilton does have in it as also other foods.. It's a bit of a minefield really. AND I might well have got all my information mixed up!!
SO what I think I should do is...slow down when changing things...look at my options calmly and methodically (not my usual way of doing things) and then proceed.
John you must get exhausted replying to all your posts - but I am glad you do.
Hi phoenixalight. I like to see what others think and write. Yes, I spend a lot of time on my computer, but it is worth it. If you take an MAO-b inhibitor and try to eat as little tyramine rich foods then watch your blood pressure. If it stays within reasonable norms then you are winning.
Don't give up.
Hi Hikoi. You asked me why I don't mention the side effects of MAO-b inhibitors or specifically eldepryl. I have spoken on this subject many times. I suffered very severely from High blood pressure. Specifically, I told everybody that my blood pressure went up to 260/180. That may seem to be impossible to some, but it was a fact. My neurologist never warned me about this problem so I did not monitor it very often. I stopped taking all my medications, as advised by my GP and after four months, slowly went back onto blood pressure medication again. I never went back onto the eldepryl or any other MAO-b inhibitor. Would I have taken an MAO-b inhibitor again, knowing all this? Yes I would, but i would have monitored my BP more closely. I would also have watched what I ate. We should avoid all foods high in Tyramine, which is the problem.
Eldeprel raises my BP too but not that high thankgoodness. The tyramine is a problem at higher doses than we take for PD. Mostly at low doses we seem be Ok but the main one i hear about is trouble sleeping i guess due to it containing amphetamine. Those are just two of a long list of potential side effects as with any medication.
While many people really like Azilect I have been surprised that quite a few people on here seem to have had problems with it.
Perhaps anti inflammatories are actually a better choice for preserving our mitochondria than MAO-b inhibitors in the early stages with what we are learning about PD.
Hi Hikoi. Are you talking about Tryamine, which I don't know, or tyramine, which is a chemical produced by the body. MAO-b inhibitors also inhibit the breakdown of tyramine in the body, and tyramine causes our blood pressure to rise. Many foods contain tyramine, the most common of which is warmed-up food, over-ripe fruit and mature cheese.
It is peculiar that we don't all react the same to MAO-b inhibitors.
In some cases it's because the pt wants a quick fix. Stalevo takes around 45 minutes to work whereas sinemet or madopar are much faster but also wear of faster. there are also gastric side effects that you are unlikely to experience with ldopa alone. Finally every consultant prescribed their own way and even in different countries prescribing varies. You are wrong to say we don't want you well as we spend most of our time trying to get the right combination of chemicals for each patient.
Hi Isis. I assume that you are a neurologist, so may I ask you, "What symptoms does levodopa successfully mask?"
As a doctor, are you happy prescribing a drug that does not do anything to slow down or affect in any way the progression of Pd, when it has such serious cumulative side effects?
I am a nurse not a meuroliogists. There is no drug proven to slow down the progression although Azilect/rasagaline has this possible ability it has never been completely proven. There is also no drug that works the same in anyone patient as you are all individuals. What works well for one doesn't work well for another. Some have many non motor symptoms some have few.
Hi Isis. Yes! What you say is 100% true. However, outside of medication, there is a lot that patients can do to help themselves slow down or even reverse their Pd symptoms.
Fast walking is the ONLY thing that has been proven to slow down the progression of Pd. So why are we not focusing on this important fact?
Okay, most patients will have problems with doing fast walking, but that does not mean that they are unable to do it. EVERYBODY I have walked with, has been able to walk properly, while I am holding their arm and they are concentrating on the walking. That being the case, then for some time, patients will have to walk with somebody in order to avoid falling. But once they have started to get stronger and more confident they will soon be able to walk on their own and build up their walking to the point where they are able to walk for one hour, three times a week. That might take two years, but during all that time they will be getting stronger and faster and will be starting to feel better.
The biggest problem is persuading patients to actually commit themselves to doing the walking. On the 27th January I will have independent medical evidence that all I am saying here WORKS!
"Fast walking is the ONLY thing that has been proven to slow down the progression of Pd. So why are we not focusing on this important fact?"
Absolute Balderdash. Fast walking is what you sell but this claim is sales talk.
It's all they know! They don't suffer the slings of consequence from taking Levodopa in ever increasing amounts!
Hi DeParkiePoet. You are right. But sitting back and doing nothing about it will not get us anywhere. I believe that most neurologists believe what they have been taught and that there is no cure for Pd. However, there is something we can do to reverse the symptoms of Pd to a much lower and more controllable level.
This all started in 2006 when certain types of vigorous exercise can repair damaged brain cells in the substantia nigra. This was announced at the 1st World Parkinson's Congress held in Washington DC in that year. Why was there not a big drive to encourage patients to start doing vigorous exercise, as I have been doing since 1994?
I was able to come off all medication in 2002 and have been living a normal life since then.
I can only assume that neurologists don't find this news very exciting or worthy of changing their thinking about Pd. This to me is reprehensible!
Why have no neurologists talked to me about what I have been doing? Is it bad for business? They cannot be surprised at this conclusion.
DR Doidge's book goes a long way to make it quite clear that the brain has a way of healing itself, and we should be aware of this and make full use of that ability.
It is 2015 and we are still living in the 20\th century when it comes dealing with Pd.
Hi Hikoi. No! I have not seen all the info out there on exercise etc. I just see all the emails I get from people who have not been told by their neurologists to do meaningful exercise; but have had their medication increased to a higher level, when it is not doing them any good, but making their condition worse!
People may talk about 'Exercise' but not all types of exercise have been shown to produce GDNF in the brain. That is what is needed out there. Dragging their feet seems to be the name of the game. There are no signs that the Parkinson's world has been told about this.
Have you managed to get hold of Dr Doidge's book and read it yet? If you have, you will have seen the scientific reason why my approach has worked.
The medical profession here in SA has been actively anti my book, and I suspect that the pharmaceutical industry is behind that. I can understand their stance, it is not good for their business, but I don't care how bad it is for their business, I want to see Pd patients get better and start to live a better life again.
Has anyone on this site heard about PQQ an enhanced form, greater bioavailability, of Co enzyme Q10? (3-5,000 times greater) I ran across this article in Life Extension's website. Since it is from 2011, I wonder why I haven't heard of it, maybe that indicates it's effectiveness has been disappointing, I will search some more and report back if I find out. sorry if the link doesn't work, I don't know for sure how to do it.
Somewhere in these posts I came across mention of PQQ, a special form of CoQ10. Reading the article I came across Dj-1, a gene which when mutated or oxidized is implicated in familial (inherited) and suspected in non-familial PD. This gene acts on a transcription gene named NrF2 ( positively affected by coffee) which stands at the top of a cascade that turns on many metabolic antioxidant pathways. The Dj-1 gene handles oxidants produced when dopamine is produced. It prevents cell death from decreasing levels of Glutathione, a major bodily antioxidant that helps remove hydrogen peroxidase and other oxidants. NAC (N-acetyl cysteine prevents oxidative damage to the Dj-1 gene. Alpha lipoic acid increases levels of Glutathione. I'd take both by pill if I had PD. I am researching for others with PD.
I might take the tocotrienol containing form of vit E mentioned in the rather technical article link here:ncbi.nlm.nih.gov/pmc/articl... about the Dj-1 anti-oxidant gene.
Hi Sonjadischer. This all sounds wonderful but why have they not gone to the trouble of doing a double-blind scientific study of its ACTUAL EFFECTS on PD or Alzheimer's. It is all well and good making these claims but where is the PROOF?