I forgot to take my supplements today. DCA , Ubiquinol, Fish oil, Lithium orotate, vinpocetine, folic acid, vinpocitine and B1 and I really developed anxiety and the shakes. I took them after lunch and things settled down. Can anyone tell me which of these is essential for PD. I also have the helmet from the Tasmanian mens group and this has started playing up. Took the medications after lunch and things have settled down. Just don't know what is working or not.
Worried about supplements.: I forgot to... - Cure Parkinson's
Worried about supplements.
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Getz
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None of theSupplements are essential.
For most people with Pd, the symptoms get getter and worse, by the hour, by the day and by the week. It is east to attribute any improvement to the latest supplement tried. Add to this the placebo effect, and. Self deception sets in
The experts at the Movement disorder Clinic ( remember these very bright guys with eight years training who see 100 patients a week or 5000 a year?) , they do not recommend any supplements, so I do not take any. It is likely that they know more than I do.
Or can take advice from the health amateurs with their free advice.
My tremours and anxiety diminished after taking my supplements. Don't know whwt is essential and what is not.
You will have to take each supplement one at. a time, for say, a week, then stop that one and are another, until you learn which one is helping.
Better still, stop them all and re assess
"years of training" yes
"very bright guys" not necessarily
The last i heard it requires a 95% average at high school to get admitted to Medical Sshool., which I think qualifies as ‘“very bright’.
Then studying all day and every evening for years, Next seeing patients every day.
It must cross your mind that they might know something that you don’t?
They know a lot that I don't, but that's not what matters. What matters is do they know more than the rest of us about anything else that we might ingest beyond pharmaceuticals that might be beneficial?
If we consider supplements a subset of nutrition, which I define as anything you put in your mouth, then surely everyone must acknowledge that things you put in your mouth might likely affect your health.
English is not my first language, but I think that one who has good training capabilities may not necessarily be "bright". But maybe it's just the language barrier...
As far as "take advice from the health amateurs with their free advice", I will say that the "movement disorder specialist" neurologist I have been seing has prescribed levodopa from which I get almost no benefits but hughe side effects. Then, pescribed more meds with more side effects to "counter" first meds... resulting in meds' symptoms worse than the disease. Then, when I asked about DBS, this specialist only replied that DBS is not for patients that don't do well on levodopa...
So, having a degenerative disease for which there is no cure and being offered such treatment options by my movement disorder specialist , turning to "amateurs with free advice" I learned about magnesium for toe cramps, B12 for tingling, glycine for insomnia, diet for help with dystonia, etc, etc , by members like Chartist, Kia17, etc, that actually helped me manage my symptoms, plus I learned about FUS PTT procedure by Lenamm, Trixiedee and MBAnderson, etc.
Some of these generous people have lived with PD for many years and are very knowledgeable.
As a matter of fact, they actually make the difference between having hope for a future at age 58 and being left totally hopless by my specialist.
You make the glaringly obvious point that people can be knowledgeable without an academic degree and/or without being a healthcare professional
It is no more complex than acknowledging, for example, a significant deficiency of vitamin B12 and vitamin D or being diabetic would worsen the condition of a PWP.
This post from someone with English not their first language is very impressive, eloquent and straight on point
True
Sono pienamente d'accordo con te. Bravo
They give to people levodopa .the same as 40 ! years ago
Yes, I was in practice 40 years ago, and remember it well.
Now I am taking Levodopa and very grateful that it still works
Yes it works with symtons but is not a cure and people want a cure in 2020
I have to step in here and say something. 95% average in high school speaks more to a person being very compliant to the system that's handing out judgement. It's a system that person believes and worship,s hence they develop a condescending and superior tone when speaking with others who are looking elsewhere for answers.
The health profession has a long history of suppressing truth, oppressing women and native practitioners, and doing everything they can to exclude everyone except their self-defined, most highly qualified to their elite club. And the driving force behind the medical establishment.has always been money--not cure, not health.
The people here in this Parkinson's group are dealing with a great foe. Let them fight it. A lot of cures in medicine happened by accident. It takes experimentation and careful observation to discover a scientific truth. Learning the past discoveries of previous scientists and engaging in the rote memorization of their methodology will get you into medical school, but it doesn't make you a healer. Being in the presence of someone sick for more than 15 minutes, listening to them, observing them, questioning how they got sick, and pondering how to get them well is what I think is what's lacking in the practice of most doctors. They are just assembly line workers, quickly coming to a judgement, filling out forms, prescribing a drug, and.....next.
This Parkinson's group is made of people who see the flaws in the system that shove them out the door with another pill and no answers. The people here are fighters. Fight on, fellow Parkies. We'll win this battle and piss off a few Charles Emerson Winchester the thirds in the process.
Your experience is not mine. Far from an assembly line,
The movement disorder clinic I attend books two hours for the initial visit, them one hour for follow up visits.
I am sorry your experiences have been so different.
Quote "Being in the presence of someone sick for more than 15 minutes, listening to them, observing them, questioning how they got sick, and pondering how to get them well is what I think is what's lacking in the practice of most doctors"
Exactly this is what was missing in my experience and exactly my complaint
Upon referral by my GP, I visited a neurologist who put me under a stress test, observed I have asymmetric tremor, no right hand swing, and slow movement, confirmed I have PD and then dumped PD meds on me. That was it. THAT WAS IT, here in the UK where they claim to be a centre of medical excellence, THAT WAS ALL I GOT.
NO thorough examination, medical tests and questions about lifestyle, possible historic trauma and other basics
If these was missing for me, then typically thousands of others must have been treated exactly like me... NOTHING BUT MINIMAL EXAMINATION AND THEN... JUST DUMP THE MEDS
With this, how can anyone convince me that the medics (in the UK, don't know about other countries) are doing anything close to the best they could
My experience in Colorado was similar. One quick look by MD, rapid dx, PD, try c\l. 5 minutes time. Slam bam thank you.
Your comments on “most doctors are assembly line workers” and interested in only money - does this apply to all my colleagues risking their health, and their lives treating those withe corona virus infections?
Yes to everything in your post. I am quite surprised that at this day in age people are still assuming medical doctors have all the answers. I am in the health profession and have several MDs in my family. The type of person you are, your ability to think outside the box, your continuing to educate yourself beyond your medical school training, and being a generally caring person who is good with people and open to learning new things or investigating novel ideas. These are things they dont teach in medical school and they make ALL the difference. There are still older surgeons performing outdated surgical methods because of their refusal to learn and the patient's have to live with the consequences. You can go for 2nd or 3rd or 4th opinions and possibly get all different ideas. I could go on forever but assuming all medical professionals are created equal is WRONG.
It may also be that they've been thoroughly indoctrinated by preachers of pharma orthodoxy. "Bright" within enforced patterns of belief.
It is strange that these very bright people cannot see through the “Indoctrination”, but you can?
A high IQ doesn't equate to a good doctor. You don't necessarily need it to have good diagnostic skills. I'd add common sense and an open mind as absolute necessities. Not a lot of that around.
My husband's neurologist, who I'd judge as far above average, based on many things, acknowledges that they still know so little about the brain and there's a lot of trial and error in treating PD. His mentor was Andrew Evans, acknowledged here in Australia and elsewhere as a leading authority on PD. He worked at the Movement Disorder Clinic under Andew and it was our neurologist that suggested putting my husband on the Neupro patch, which turned my husband's life around.
His attitude, when I asked him about the B1 protocol, was to try it. He comment was that there's very little known about vitamins and supplements, as there's no money in researching them, you can't patent a vitamin. B1 didn't work for him, but it was worth a try.
The neurologist works closely with our GP and has had all his vitamin and mineral levels checked. He takes B6, B12, magnesium, folic acid, Vitamin D.
Mannitol is a good example of the lack of research. I started my husband on it after reading about it on this site , which did include a link to research being done in Israel. I got our pharmacist to check it out as well. The effect on my husband was immediate.. The Neupro patch had stopped working and he reverted to his initial main symptom of severe apathy. (His first diagnosis was Lewy Body Dementia because of this). He hasn't been interested in anything for about 12 months. After starting on the Mannitol (3 months ago now) he is reading the newspapers, books, crosswords, taking part in conversations, and until the lockdown, going to friends for dinner. None of which he'd done in all that time. Last week we went to see the neurologist. He was stunned. He has since sent me further research and trials being done on mannitol.
Co-incidentally, while my husband was in hospital, I mentioned the mannitol. The doctor told me that they use mannitol for brain injuries and have for a long time. I then tell our GP about it. He tells me that when he was doing his training at a major hospital, they used it for brain operations. He is about to retire. We are talking 40 years ago. Hense my open mind on vitamins and supplements.
Lithium helps me with anxiety, i only take 5 or 10mg per day. The only others on your list that I consider essential are b1 and fish oil.
I got most of these supplements after reading an articl here by Dr Laurie Mischley.
Well people here are all nuts about dr mischley so I guess you're in good hands
Are you being sarcastic? Not a good thing, if so. We are in this together.
Not being sarcastic at all, my good friend ! Laura Mischley is indeed very popular amongst people here. I personally never worked with her, myself.
Sorry bassofspades if I misunderstood you.
No worries mate!
The fish oil is helping your body absorb the Coq10 because most Coq10 products are fat soluable and some supplements contain both nutrients:
amazon.com/dp/B003PQWLFS?ta...
Of course not all CoQ10 is created equal and the 2 most commonly sold forms are ubiquinone and ubiquinol. Ubiquinone is the non-reduced form and ubiquinol is the reduced form. Under the age of 40 the human body converts ubiquinone to uniquinol when needed and after 40 the body starts to have problems inter-converting them. So ubiquinol is probably best for someone over 40.
What type of CoQ10 is it (and dose)?
It would probably be a good idea to replace the folic acid with methyltetrahydrofolic acid - the bioavailable form of folate because synthetic folic acid is associated with cancer, etc...
Silvestrov,
Excellent combination, COQ10 with fish oil. Is it a quality product?
I understand its a good quality product but am considering changing from fish oil to Krill oil.
Hi Getz,
My husband switched to Krill Oil recently. I believe it's better than fish oil.
What is krill oil and where do you get it from?
Thank you
amazon.com/Bulletproof-Stre...
Tiny creatures (look like shrimp) living in the bottom of the Antarctic. They are free of toxins and mercury, so that makes it an excellent source of Omega 3 and Astaxanthin, two powerful antioxidants.
I previously tried Nordic Naturals and their products are of high quality. The reason why I do not take them is they are pricey. Of course the only limitation on taking fish oil is it is a blood thinner so if taken with say, Coumadin (warfarin), you could have internal bleeding.
I'm on no medication, only these supplements.
Silvestrov,
Thank you! I noticed though that its COQ10 is not Ubiquinol. My husband is early 70s so it couldn't be as good for him. He is taking liquid COQ10 Ubiquinol which Dr. Mischley recommended. He was taking Metagenics Fish Oil, high quality and a bit expensive. Lately he switched to Krill Oil after reading and searching about it.
What is your opinion on Krill Oil? I also know that Dr. Hyman has written about Krill Oil as an alternative to fish oil due to high levels of toxins and mercury in fish oils.
Kril oil is good because it contains high levels of astaxanthin, a powerful antioxidant.
ncbi.nlm.nih.gov/pmc/articl...
The red color of wild-caught salmon is from the consumptom of red kril and this, along with the incredible amounts of healthy fatty acids in salmon, make it so healthy. Unfortunately farm raised salmon are actually green and are died red for market - really nasty stuff. Kril are so healthy because of their short life span and their small size means they do not absorb much of the toxins in our oceans. These are the the reasons why I eat sardines.
organicfacts.net/health-ben...
When I was growing up, my father would buy canned sardines, and my mom would add olive oil and vinegar. It was part of our lunch
and delicious! Dad would also buy fresh caught sardines which my mom would fry in olive oil. Healthy and delicious meals!
No medicinal blood thinners just natural blood thinners.
Thanks Silvestrov. I take 100mg of Ubiquinol and I'm 72. Shall check out the folic acid alternative.
Take it easy on the folate. See my writing here:
Folate Supplementation Carcinogenic
Well, not so fast there., either way. Folic acid (folate) is a little more complicated. academic.oup.com/ajcn/artic...
Your reference is roughly consistent with what I found, after allowing for author's bias:
" Folic acid supplementation may prevent initiation and early promotion of cancer development but it may promote the progression of established precancerous and cancer cells (26, 27).
Most randomized clinical trials have generally shown a null effect of folic acid supplementation on cancer biomarkers [e.g., colon adenomatous polyp recurrence (28) and cervical dysplasia regression (29, 30)] or a marginally protective effect [e.g., bronchial metaplasia regression (31, 32)]. Alarmingly, however, a few folic acid chemoprevention trials in humans conducted in predisposed* individuals have demonstrated a potential tumor-promoting effect of folic acid supplementation. For example, in the Aspirin/Folate Polyp Prevention Study, folic acid supplementation at 1 mg/d for 6 y (n = 1021) significantly increased the risk of recurrence of advanced adenomas with a high malignant potential by 67% (RR: 1.67; 95% CI: 1.00, 2.80) and the risk of multiple adenomas 2.3-fold (RR: 2.32; 95% CI: 1.23, 4.35) (33). Furthermore, a 10-y follow-up study of this trial showed that those who received folic acid supplementation had a significantly increased risk of prostate cancer (34). "
*Some important studies I found and cited were not restricted to predisposed individuals. Likewise, the increased risk for prostate cancer cited above was not for patients with a known predisposition to prostate cancer. Also, note that the increased risks set forth above are quite high.
Emphases added.
We want to have a middling level of folate circulating, not a high level. With folate enrichment of some foods in the American diet, folate supplementation can raise levels unnecessarily. Personally, my folate levels are within the normal range and I avoid folate supplementation.
That's what I'm thinking, you don't want to do without it. If you have cancer, those few folks might run some minimal risk if they over-supplement, and if you don't have cancer, you probably don't want to do without it. Some people aren't going to make a fine distinction and, if they survive, might return and actually want their money back and to get you fired or something. "'You've GOT to have a sense of proportion," she used to say to him-- 28 times a day." (Douglas Adams)
Getz,
I have a question regarding DCA/Dichloroacetate which you say you are taking. I don't think it would be considered a supplement by most people's standards and it is generally used to fight cancer. I believe there is a Canadian study or two testing it for various types of cancer. It is potent and can cause side effects. It is also noted for causing neuropathy. Why are you taking it? I never expected to see DCA mentioned on this forum. Here are a couple of studies which used it to good effect in cancer treatment.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pubmed/308...
A high quality fish oil is antiinflammatory and useful. Most studies use around 4 grams a day to get measurable effects. Inflammation is at elevated levels in PWP.
Vitamin B-1/Thiamine has antiinflammatory effects in the brain if there is deficiency as seen in several neurodegenerative diseases. Brain inflammation is a key aspect in PD. Many on this forum have reported multiple symptom relieving effects of higher dose thiamine.
Ubiquinol can be useful for the mitochondria at higher dose.
Lithium Orotate at very low dose (less than 21mg/day) has been reported to be useful for dementia, anxiety and depression. Forum member bassofspades found it useful for anxiety, depression and clarity of thought.
Vinpocetine increases blood flow to the brain and forum member Cons10 felt it helped her in terms of certain PD symptoms. It is purported to help with memory issues.
Folic acid is probably not a good idea except in special cases such as adjunctive treatment to methotrexate as a protective agent. If you must take it, folate may be a better option than folic acid.
As to what is helping you, I would say folic acid would be at or near the bottom of the list. I think the B-1 , fish oil, lithium orotate at very low dose, Ubiquinol at higher dose, vinpocetine at the recommended dose may be useful and likely helpful and I would think the combination may have more effect than anyone of those alone. I'm not sure of how DCA would apply to PD and if you are going to take folic acid, I think the folate form may be a better type.
Art
Thanks Art. I took DCA when I had prostate cancer some years ago and I understood from Prof Michelakis's writing that it turned on the mitochondria in cells. As the mitochondria has been damaged by the alpha synuclein misfolding something in brain cells I thought I'd include it to try and activate them. I don't mind stopping it as it is expensive.
I also read that ALA and B12 act in synogy to kill off the alpha synuclein hence their inclusion.
Folic acid is now deleted.
Okay, that explains about the DCA. For certain cancers it has shown effectiveness in humans. Apparently the neuropathy is associated with treatment dosing, but I imagine your dosing is less than treatment dosing. ALA/alpha lipoic acid is a potent antioxidant and is also used as part of an anticancer protocol that has been used by a doctor in New Mexico to treat liver cancer and he apparently has a fairly high success rate. He starts with an injection and then an oral maintenance dose with additional injections over time plus two other medications. His name is Dr. Burt Berkson and is fairly well known for his protocol.
I was not aware of the combination of ALA/B-12 for the purpose that you describe.
Art
I bought every supplement that was recommended for my husband with PD ,and none ever worked. The VieLight 810 helped him. It's an infared light that goes in the nasal cavity and helped his cognition.
What worked was phosphatidyl-serine for ME, it calmed me down. I still take it now that he is gone.
Thank you. I am so sorry but wish you the best.
B1- at what dosage?
I take all on your list and if my body missed anything it would be the B1.
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