I was dx April 2018 with Parkinson’s by a Movement Specialist. I am tremor dominate on my dominate side. I am taking Selegeline. I was not encouraged by the doctor that diagnosed me, who told me there’s no cure you; you can work until you become disabled...oh btw exercise is the only thing that’s known to slow the progression. I have started my own vitamin regimen based on what I read here. I have found another movement specialist that is much more positive and gave me a lot of information regarding diet & vitamins. Though I am doing all of these things, the tremor is worsening. Handwriting is horrible, sleep is interrupted every night, even though I’m taking klonapen. My doctor is reluctant to put me on levodopa because I am only 53. Any suggestions btw I already take B1. The B1 helps but not enough and when I increased it, it worsened the tremor. Need help. I am seeing my doctor tomorrow and need some suggestions as to what to ask him.
Suggestions anyone?: I was dx April 201... - Cure Parkinson's
Suggestions anyone?
Some neurologists are real assh*les... Been there, done that. Do not pay attention.
From my experience, and lots of PubMeds reading, L-Dopa is the best molecule available, and there is no reason to delay its use.
It works even better with Thiamine HCL. Dr COSTANTINI himself upped my L-Dopa use in the process of looking for the best dose for me.
I also choose to continue mannitol (see CliniCrowd.com) even though its effectiveness is not obvious - at least on me. You could give it a try.
Thank you!! I will check it out & ask him about the L-Dopa b/c it’s becoming unbearable to try to sit still. I can’t watch a movie without being completely miserable.
Your description of your symptoms seem to suggest you have pd many years before you were officially diagnosed
If its really just a year ago that you have had PD, your description suggest its rather aggressive
I would advice you take more vitamins, supplements and regimens-- visit MBAnderson's profile
Grumpy,
I tried to search MBAAndeerson's profile...Not working, any suggestion?
Do you have only tremors? I’ve never heard or tremors effecting sleep. I don’t have tremors but have Chorea movements. This is not typical. I take Ingrezza for the movements. It works well for me with the b1 Thiamine hcl. I doubt it works for tremors. Thank goodness for insurance because it is $6,000.00 a month for 1 capsule a day. I question the tremors only because of your inability to sit through a movie. Your movement disorder specialist would know. Tremors are different from other movements. If you respond to c/l it’s almost a guarantee you have PD and not something else. I have parkinsonism not PD. Basically I have everything but tremors. I even had a DaTScan that was inconclusive. Do you have other symptoms besides tremors?
I supose you have looked at the CBD oil
Option.
Re using cannabis
Discussion has been CBD vs THC
primarily due to legal issues in various states
More effective when using a little THC with CBD
My 5 yrs experience and research has me look at strain
Indica vs Sativa
Main benefit is pain relief and motivation to exercise-Sativa
After trying several, I use harlesin, a hybrid
dopedirectory.com/marijuana...
Also use Sinemet and Mucana Puriens
tried cannabis only and Sinemet only
need both
There is also an essential oil option, that has a higher percentage of Beta-caryophyllene, called Copaiba, Therapeutic Grade only,,, has no psychoactive component, that would make you high, and unable to function normally, and effectively..
Tried it. Spent a lot of money with very little results. Thank you for the suggestion though.
The idea the levodopa causes premature onset of dyskinesia has been shown to be a myth. Much better to be properly medicated than under medicated.
Correct doses of HDT, Vitamin D3 , magnesium,Low dose L Dopa, Intermittent fasting, walking and cycling + low carb diet and intermittent fasting been the best strategies worked for me.
Btw what is HDT?
High Dose Thiamine
I take a 500mg tablet on an empty stomach every morning. When I tried to increase it, the tremor worsened. Thank you for your answer.
500mg is on the low side. You might try the mucuna (spelling?) for the tremors. I don’t have tremors so haven’t taken it. If that is effective for your tremors try increasing the HDT again. It is very effective at stopping the progression of PD. Many people continue with c/l while taking b1. In fact Dr. Constantini recommends continuing the c/l but may be able to lower the dose.
Please check out Facebook group Parkinson’s Thiamine hcl. It is also a great source of information. It is dedicated to HDT protocol. Many of us are on Health Unlocked and the Facebook group. You become familiar with the names. PD people are so helpful and teach and share. Also once you find your right dose you shouldn’t ever have to increase it. You do have to continue taking it. B1 is only a treatment not a cure. PwP have been on it for over 5 years and are stable with continuing the same dose. It can take a couple of months to find “your” dose. Be patient and good luck.
Margie
Wondering if anyone knows if dopamine is really only effective for tremor... so if not tremor dominant why take it.
I don’t take any Parkinson’s medication as I don’t have tremors. I take b1 Thiamine hcl which has almost eliminated all my other symptoms. I don’t have PD, but I do have parkinsonism. Put simply it’s PD without tremors and no clear progression. I’ve stopped the progression with b1 Thiamine hcl.
How much B1 do you take and how often? No meds but any supplements and how much do you weigh?
I started with 1g twice a day. I’ve reduced that to 1g in the am and 500mg in the afternoon. Sad to say but I am obese weighing 180 lbs am only 4’10”. Depression medication did that to me. I take b12 trying to defeat fatigue. I also take vitamin C and D, b complex and calcium. I take the calcium for bone loss and D for aging. I don’t take medication because I don’t have tremors.
Margie
Can you explain intermittent fasting?
I am doing everything but the HDT & L-dopa. Will talk to my doctor about it. Thanks.
I try not to lose hope but the fact that we have a cure for AIDS, which I’m very happy about btw, yet we can’t even figure out the cause of Parkinson’s stresses me out about the future. Without a cause there can be no cure sadly.
My general practitioner (medical doctor) shared his perception with me. Any disease that has anything to do with sex (and can spread and kill), will sooner than other illnesses, have a cure.
You can't catch PD from sex ......hence NOT a high priority. For me It was food for thought
I don't think HIV got the memo! 😆😆😆
I think it did 😂. See this:. washingtonpost.com/amphtml/...
Yeah, I saw it and I remember the original "Berlin patient" who was cured the same way. He almost died from the treatment and this time was no walk in the park either. They still don't know exactly why it has worked in the Berlin patient and they don't know exactly why it worked in this patient as other cancer patients with HIV have gone through the same treatment and not eradicated the HIV virus and this one they're not saying cured , but only in remission. The HIV cocktails are big money makers and every customer is a customer for life, so who needs a cure? 😝😝😝 Business as usual!
Art
Yet we do have a cure for Hep B which was racing its way through the baby boomers... I am not giving up hope. PD will cost EVERY country Billions in long-term care as people dont “die” from PD but rather need long term care. Countries must be looking at that long term cost of the PD pandemic???
I think all countries have very real concerns about the Alzheimer's disease epidemic and other forms of dementia because they require a very great expense as the patients generally end up in high cost full time care facilities early on in the disease process and can remain there for a decade or more if they don't die from something else first. Full time in facility care is extremely expensive. With PD, patients can remain functional for decades at home for a lot less in care expenses. Another consideration is that if HDT becomes mainstream and proves to halt or significantly slow disease progression, as it currently appears to do in responders, there is not yet anything comparable for AD and that could prove very costly in terms of AD health care costs!
Art
I agree, HDT may help to slow disease progression, and based on the sample here within it looks promising, But what of the millions? Who are following traditional Neuro recommendations? We are looking at a Health care crisis. Money talks in all nations and here in the US we can not care for the folks we have now. What happens if this population doubles or triples?
Again, AD is currently comprised of a huge portion of the baby boomers who are a very huge group and the AD cost alone could easily bankrupt the medical system if new research does not come up with some quick fixes soon! Here is a little quote that gives a clue and it was written awhile back :
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'Did You Know? The worldwide cost of dementia care is over $600 billion. If dementia care were a country, it would be the world’s 18th largest economy.'
::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
and then there's this quote :
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Depending on one's state of residence, assisted or senior living costs approximately $2,525 to $5,745 / month. The national average in 2016 is $3,600/ month. Alzheimer's care in assisted living communities costs approximately $1,150 more each month. See the average Alzheimer's care cost in your state.
Keep in mind that these quotes were taken from an article that was written in 2016? So that likely means that the numbers are even greater now! Here is a link to the article :
payingforseniorcare.com/alz...
Art
Art, Not disagreeing with proportionate fact that AD is a long term health care crisis, but rather asserting that PD is a partner in the crime and a crisis of it’s own requiring national (demanding!) attention which may lead to advances in disease delay and/or cure. AD and PD are unfortunately bed partners that demand equal attention due to the comorbitties they share.
I agree, they are both bad and need some serious research efforts!
Looking at PubMed studies as a guide to give an idea of what funding is being allocated for research in each health issue based on last years studies, AD is the clear winner with 10,311 compared to PD with only 7,014 studies listed for last year.
I take the studies to represent what the powers that be feel is the more important of the two in terms of allocating research monies. I'm sure there are many variables because some studies are more expensive than others, but I think this is a rough and reasonable guide to give a clue about where research dollars are really going.
Just for the sake of comparison and priorities, diabetes studies totaled out to 41,305 last year!
Art
I get your point, I really do! but after closer examination (which i have not done) how many of the AD studies are also looking at LBD and PD related dementia (Cross examination?) Like I said before, the 2 are bedfellows and it is difficult to examine one without looking at the other. I believe Pd is falling under (unfortunately) the AD umberella and the neuro research community as a whole is evaluating both. Personally, myfingers are crossed they stumble across something definitive. I don’t believe one superceeds the other but rather its a toss of the dice for which one comes out on top. But really, we need to look at trial outcomes to see who is in the lead? My guess is that future dx of PD will be separated into types and subtypes with different meds for a variety of symptoms
Makes sense.
Not enough money for Parkinson's research,unlike Aids.
I have tremor dominant PD and I use nutrivita Mucuna 100% ldopa which I take together with B1 and a pinch of magnesium, which works like magic and stops the tremors. The doctor is not going to give you any feedback on natural supplements. Keep doing what you're doing here, keep coming back it works if you work it...
Do you get any side effects ie nausea with the Mucuna?
No nausea. Initially I got some diskynisea but the use of B1 is said to take that away and it did. I started taking Mucuna way before B1.
Come to think of it, yes initially I took too much and couldn't sleep and felt sick to my stomach, but I adjusted the dose and it's worked ever since.
Rasagelline , which you are taking is the best medicine. It should be taken as 1 mg dose a day. Regarding tremors , my neurologist recommended me tab Premirol SR 0.26 @ 6 tablets a day.
Exercise with Yoga, dry fruits and juices in diet with fibres are recommended for blood circulation and digestion.
Pl hold 2 to 3 kg of weight in your hands and keep your hands straight for few minutes. This is the best solution for improving hand tremors. Write a page daily thereafter, it will improve your hand writing.
Try to be happy by meeting good people, singing and dancing.
hi danasr well its ok using vitamins but i know were you are you are getting a lot of pain go see a doctor and tell him you want to try either sinemet or madopar he can do it quickly start you on a low dose over a few weeks then you will get an idea how much you will need, regards john
Hi Danasr. I don't know what you are prepared to do to start getting better. Yes! You possibly can get better. I did. I was diagnosed in 1992. In 1994 started taking Selegiline and started doing fast walking. In 2002 I stopped taking the selegiline and have been medication-free since then. If you are prepared to do the fast waking, which most people are capable of doing, then you can be on the road to recovery within a very short time.
Look at my website - reverseparkinsons.net and contact me. I will help you, at no cost to yourself. All I want is for you and everybody else to get better.
The first thing I would do if I was diagnosed again with Parkinson’s is check my house for mold pesticides and chemicals. I was paralyzed for two years not knowing that I had mold in my house and that I was highly allergic to mold and I was being paralyzed by the mold. You can check your urine with several companies that do that that kind of test and see if you do have mold in your body. I can also tell you for sure that Parkinson’s is associated with many personality issues many thinking issues and ways of behaving. The first thing I suggest you do is read Howard Shifke‘s book you can find it on Amazon and it is called fighting Parkinson’s and winning. You can also visit his website Fighting Parkinson’s drug free. If you are taking B1 thiamine I’m sure that you have read about Dr. Constantini and there’s much written about him and his directions and how to take the B1 and some of that might really help you I found that taking B1 injections three times a week has helped me the most. I did some hyperbaric chamber therapies which helped me also. The most important thing is to learn about what parts of your personality and what parts of your behavior Are giving parkinson’s the right to exist in your body. I also have gotten a lot of help from readijg Guillermo Maldonado’s books. He is a well-known pastor in Miami Florida and his books deal with a lot of the personality issues that I have to overcome in order to get well. I work with Howard Shifke all the time which has made the difference in my life. One thing I know for sure is that we can’t fix Parkinson’s physical symptoms with physical means when a majority of our problem is the way we handle stress in life and how we think and behave. Every neurologist is going to have the same type of understanding of the disease of Parkinson’s because they go to medical school and they’re taught everything that they know by the drug company so all they know to do is to give us drugs - Which eventually makes everything a lot worse. You cannot fix a spiritual and emotional problem by physical means only. Yes we should watch our diet we can do exercises - we can take vitamins we can do a lot of things but we’re not gonna be able to get well unless we fix everything and work on everything that led us into the ditch in the first place. The most important thing that we have to do is calm down our central nervous system and feel safe and begin to understand how to deal with stress. I wish someone had told me these things years ago before I had to spend all my money and live in torment because of my Parkinson’s symptoms. I wish I had begun to talk to Howard years ago. So it’s not all about your drugs and how to fix drugs and vitamins and all that although that will help it’s really about learning how to change so that our bodies can be in peace and we can lose the disease. One thing I do know - Is that it’s a horrible lie the Parkinson’s cannot be cured because I’ve seen a lot of people cured of Parkinson’s and and many other diseases because I worked in a ministry for 15 years where I saw all kinds of diseases healed. Also please check the testimonies on Howard Shifke‘s website you’ll see a lot of positive changes and healings there too. Again I wish somebody had told me to check my house for mold and chemicals and pesticides years ago - I would never have gotten as sick as I did. something is irritating your central nervous system and it could be a lot of things and you have to check them and one by one get them out of your life. Blessings
I’ve had Parkinson’s since 2009,every year my right side has become weaker and weaker, i can’t do repetitive things like clapping, I can’t stand up from a chair without holding on to something, don’t do any type of exercise since my balance is not good either and I am afraid to fall backwards, after my meds wears off I walk like a baby learning to walk, I take 1 C/L 3x day with 1 mirapex I also take 3 different meds for depression and anxiety. I feel that I am not normales I don’t want to leave my house anymore, since if I do I have to rush since I only have 2hrs the time my pd meds last. Any suggestions of what kind of exercise I can do, also what supplements do you recommend. Thanks
Chicafromchitown,
Here is a link to the B-1 information that , Bcarroll, mentioned above. The information on this page should answer most if not all of your questions about this vitamin B-1 supplement protocol commonly referred to as HDT :
healthunlocked.com/parkinso...
Art
Check out the B1 info easily recommended asap. Wish you the best, please keep us posted. I know exactly how you feel, I felt I was headed in the same direction until I started B1.
Great thank you
join my facebook group:
"parkinson's thiamine hcl"
facebook.com/groups/2322600... …
Parkinson's Relief, Questions and Answers
Guide:
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
Hi Danasr!
Stay positive! In terms of doctors go with someone that is supportive and knows their stuff. What city and state are you in?
I have refused all medications and I only take Mucuna from Barlowes. It’s excellent and tremors are non-existent for hours at a time. I workout (weights, boxing, ALOT of cardio, and my diet is on point - NO sugar, caffeine or stimulants of any kind).
Let me know if you have any other ?’s!
Louisiana, thank you for the information
What kind of mucana is barlowes a brand, & how much? How long have you been dx? I am 53...how old are you? Is it mucana puriens?
Yes it’s Mucuna Puriens. Get the 40% capsules. They are 650 mg per capsule. Barlow’s is the name of the company. It’s online and the guy that runs the company is excellent. I started having symptoms in March 2015 and I was officially diagnosed 2017 but the jury is still out because my symptoms are very odd and they are nothing like the typical symptoms of someone with PD. So they think it could possibly be low blood sugar issue or a gastric issue and none of my symptoms really makes sense.
I seriously doubt B1 had any fault
Some swear by coconut oil and there is also an essential oil that can be applied topically to temporarily improve, or stop tremors as well.
What’s the oil?
The idea of B1 is to use it as a supplement to any c/l treatment, not so much on its own, though it might help; it's real help is as a supplement with levodopa and some others, so that is how you make best use of it.
Also important to understand that some approaches help prevent disease progression, which is different than approaches to combat symptoms. Both must be considered.
Levodopa is NOT shown to cause premature tremors, so if you have tremors, it is likely the disease process OR something else, not the Levodopa. B1 can produce that side effect but a simple titration will help you find the right dose for your own person. Meanwhile B1 seems to help prevent or slow further disease progression, whereas for the symptom of tremors it may help or may not. But for helping other symptoms or slowing disease progression, 500mg once a day is on the low side, Dr. C starts people out at I think 2000mg at morning and 2000 more early afternoon; but his seminal published work on that was with people who were already into the severe phase. Starting too late in the disease progression might seem to help less, so much damage has been done; whereas very early in the disease progression may not have been studied much either.
So you see it is important to be careful to see if you can ascertain whether your tremors are really because of the B1, and you do this by stopping or changing ONLY ONE THING AT A TIME, so that you know any changes that occur quickly after that is more likely due to that one thing. Otherwise you can't really develop any knowledge and then are susceptible to myths or further confusion. This is how the scientists do it, they call it a "reversal."
Also you are on the very early side for everything, so I don't know what that means, except that it is often the case that when actual symptoms appear, yes as someone said, it is possible you already have the disease, moving through years called "asymptomatic," just like hypertension (high blood pressure) also shows no symptoms. Anyway, since you are so early and limited in symptoms, now is the perfect time to freeze everything except your B1 dose, and vary that around some to see if anything changes quickly following that one change.
But I would also say that prevention is far better than waiting around for more symptoms, if you have Parkinson's, it is not been known to reverse, only progress, except for this B1 (used in in high doses); there is also an experimental drug now in Spain clinical phase two trials that shows unusual promise, so stay tuned on that one too.
Now, I am learning about the role of Magnesium and it may well be necessary. I already know that Vitamin D is a rate limiting factor in the production of dopamine, getting the most out of the dopamine-producing cells that you do have, so definitely you need that, I am not yet sure on the dose.
Also I am looking into Rhodiola, which I do not yet know enough about or if there is any real science done on it, but it is somewhat claimed to have some effect of "inhibiting uptake" of dopamine, meaning the dopamine you need stays in circulation longer before it is broken down for recycling...again, making the most of the dopamine you are producing.
Maybe some others of our companions can talk better about magnesium and rhodiola and provide some sources to check out. Can anyone do so?
Now some tremor and agitation can be caused by too much dopamine, as opposed to too little; or in interaction with some other drug you may be taking, such as some of the ones used for depression. Very delicate balance, dopamine has several roles in the body.
Now, is there anyone who can speak to eating foods high in dopamine, like fava beans? Is that of any use?
Gabapentin helps also with my night time tremor. I have pain/stiffness when I sleep so pain medicine helps. I also wear CPAP for sleep apnea based on a sleep study.
Thanks everyone for the information.
Hello and good evening to you! When dealing with any " movement disorder, " especially Parkinson's disease, you must get a second opinion; I say this since it's a clinical diagnosis, as the only way to conclusively prove it's pathology is in autopsy with the presence of " lewy bodies; " I'm 46, so we're both a long way from that, but what you should seek out is a PHd Neurologist who does research and has at least 30 years of experience. There is a DAT-spect exam in nuclear imaging, which I did have, and came back positive for Dopamine depletion; This is a tool just to confirm a diagnosis, not the cornerstone in making one. Parkinson's disease is one of the most misdiagnosed neurological disorders as MANY things can mimic it, much like Lupus. BTW, you are not too young for levodopa, as I've been on that for a couple of years and god a positive response. I cannot impress upon you enough the need to get a second opinion, especially since a lot of the treatment's for Parkinson's, mainly the drugs, have a bad side-effect profile and that some of them are permanent(tardive dyskinesia). Be well and don't stop finding the answers you're looking for! Johnny
Hi and thanks for your reply. I have had a second opinion. I’m on my second movement specialist. They both had the same opinion; that I have PD. I did not like my 1st movement doc; she had a terrible bedside manner. I knew that I would be seeing this person a lot & I decided I was not going to pay her to be so cold to me. Now I travel 75 miles to see a movement specialist b/c there are very few choices in South Louisiana.
Are you close to Lake Charles? If so I ran into a great Chiropractic Physician when I was there a few years ago. He specializes in neurological conditions. I saw him three times and it really helped with my balance and coordination. Unfortunately I had to leave and couldn't continue with him but he was great. If your interested I can get you his name and number.
I’m about 3 hours away from Lake Charles but I would still like his information. Tjanks.
Dr. Kyle Daigle uperformance.com The website has the location and phone number as well as some information on the practice. Best of luck to you.
I WAS DIAGNOSED IN 1997,BEEN ON LEVODOPA ALL ALONG THE WAY.HAD TO RETIRE IN 2006.HAD DEEP BRAIN STIMULATION (DBS) SURGERY IN2010 & 2016.EASY NO PAIN SURGURY.MY NEUROLGISTS ARE GREAT.I LIVE NEAR GRAND RAPIDS,MICHIGAN
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