Do MDD have the time to look at the research that's going on in treating Parkinsons?Do they dismiss anything that's not peer reviewed.
e.g
My wife who's being treated for Parkinsons, has for the past year, suffered, leg/ calf cramp, wher she has to stop a few times and basically try and stretch it off.
I, for the last 5 years, thorough research, have tried to see if any vitamins, herbs helped her Parkinsons.
I recently, started her on B3 1000mg a day and CoQu10 100mg a day and for the last 6 weeks she has had none of the cramp systems.
I mentioned this to her MDD but got no feedback.
Also discovered that Helicobacter pylori can affect the absorption of levodopa and give cause to constipation, the eradication of the tested positive, HP is ongoing via our own local doctor.
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Allypally49
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It has been our experience that the neurologist we saw was unaware of research being done at his own location. We also had experience with the neurologist (who was an intern) and his supervisors not being receptive to any new research I mentioned. Lucky for us we now have a new doctor and she is great and she is very interested in all the new research. The neurologist who diagnosed my husband is no longer at this institution.
What kind of B3 are you using? I am a believer in Nicotinic Acid and maybe other forms of B3. I take 1000 mg NA instant release twice a day (That may be too much).
I think the reason the doctors don't follow the trials and alternatives is in our corporate doctrine healthcare system "healthcare provider’s actions (or inaction) are judged based on what a reasonably competent provider with the same level of training would have done under the circumstances. If the care provider’s actions were reasonable, based on what a similarly-trained professional would have done, then the provider is not considered to be negligent." forbes.com/advisor/legal/me...
The most important thing is: What you are doing seems to be working!
Second: Nothing I am sharing here contradicts what you are doing!
Here is some interesting reading from my notes:
Therapeutic Potential of NAD-Boosting Molecules: The In Vivo Evidence 2018 sci-hub.se/10.1016/j.mad.20... Good info and graphics.
Niacin and Butyrate: Nutraceuticals Targeting Dysbiosis and Intestinal Permeability in Parkinson’s Disease 2020mdpi.com/2072-6643/13/1/28/htm
6. Butyrate
Butyrate interacts with the GPR109A receptor and exhibits anti-inflammatory and anti-carcinogenic properties [12]. Butyrate is also the intestinal epithelial cells’ most-utilized SCFA for energy, making its investigation of the utmost importance for intestinal well-being [15]. In the study led by Feng et al., 24 piglets weaned at 21 days with diarrhea were divided into two groups. One group was fed with the basal diet and the other with basal diet plus 2000 mg/kg sodium butyrate. This experiment lasted a total of 21 days in which the diarrhea rate, frequency, and index were decreased compared to control. It was determined that intestinal permeability also was influenced by the addition of sodium butyrate, with upregulation of occludin and claudin-3 in the ileum and occludin, claudin-3, and ZO-1 expression in the colon. Using Western Blot analysis, ERK1/2, Akt, and P38 were phosphorylated, which indicated activation of the GPR109A pathway. Pro-inflammatory markers such as TNF-α were found to be significantly decreased with the administration of butyrate [12]. In another study, Yan et al. investigated the effects of butyrate on tight junction proteins on an LPS-induced inflammation model. They found that butyrate increased concentrations of claudins-3 and 4 and their mRNA expression in a dose-dependent manner, as well as prevented downregulation of Akt by LPS [57]. These studies suggest that butyrate may enhance tight junction expression through the Akt/mTOR pathway.
7. Niacin
PD patients are found to have significantly decreased niacin levels compared to age-matched healthy controls [52]. This has been attributed to both the disease itself and the medication used to attenuate motor symptoms [58]. Sinemet, the most commonly used PD medication, includes carbidopa, which prevents the conversion from l-dopa to dopamine within the peripheral nervous system. This allows more dopamine to be taken up by the central nervous system and used where it is scarce after dopaminergic cell loss. Unfortunately, a consequence of carbidopa is reduced conversion of tryptophan to niacin. Sinemet dose and frequency are increased over time as PD symptoms worsen, but concurrently side-effects also worsen.
There are multiple forms of Vitamin B3, including nicotinic acid, nicotinamide, and nicotinamide riboside. Although all three forms provide a natural source of nicotinamide adenine dinucleotide (NAD) to the body, only nicotinic acid (niacin) binds to the anti-inflammatory GPR109A receptor [59]. In a clinical trial, it was found that the GPR109A receptor is upregulated in the white blood cells (WBCs) of PD patients [52]. After taking daily niacin supplements, the levels of the GPR109A receptor were reduced to a similar level of age-matched healthy controls. Subsequent anti-inflammatory effects have also been found in patients taking niacin. A shift in macrophages from a pro-inflammatory phenotype to an anti-inflammatory phenotype has been found after niacin supplementation, as shown in Figure 2 [60]. In LPS-activated mouse microglial cells, niacin was able to reduce IL-6 and IL-1β production [17]. Moreover, when GPR109A was downregulated with siRNA, niacin was not able to produce this effect.
Nutrients 13 00028 g002 550
Figure 2. Niacin shifts macrophage polarization from pro-inflammatory to an anti-inflammatory profile in Parkinson’s disease patients. Naïve (M0 φ) pro-inflammatory (M1 φ) and anti-inflammatory (M2 φ) macrophages.
A case report of a PD patient taking a high-dose niacin supplement for high triglyceride levels serendipitously found a reduction in motor symptoms, such as tremor and rigidity [61]. Unfortunately, large doses of niacin can result in flushing, secondary to the action on Langerhan’s skin cells, which have high levels of the GPR109A receptor. The PD patient taking a large dose of niacin daily had to quickly discontinue due to flushing and uncontrollable nightmares [61]. Fortunately, niacin doses of 500 mg or less, when taken with food and water, typically have little to no flushing effect. Moreover, flushing typically decreases with the continuation of niacin supplements. Other benefits to PD with niacin supplementation include an increase in quality of life [60,62] and motor symptoms [61,62]; fatigue and depression in PD may also benefit. Effects of niacin supplementation on mechanistic changes in pathophysiology, such as changes in pathologic α-synuclein levels, mitochondrial dysfunction, and leaky gut, should be investigated further.
“GPR109A, a G-protein coupled receptor found on the surface of intestinal epithelium and macrophages, closely interacts with the microbiome to permit immune tolerance or trigger an inflammatory cascade. Loss of GPR109A is associated with decreased concentration of tight junction proteins and increased intestinal permeability. In inflammatory states, butyrate acts via GPR109A to increase concentrations of tight junction proteins and improve intestinal permeability. Niacin deficiency is exacerbated in PD by dopaminergic medications. Furthermore, niacin shifts macrophage polarization from pro-inflammatory to an anti-inflammatory profile. Future studies should study the effects of long-term supplementation of promising nutrients, such as butyrate and niacin, on their abilities to halt or reverse disease progression in PD.”
I just saw this study "Niacin Cures Systemic NAD+ Deficiency and Improves Muscle Performance in Adult-Onset Mitochondrial Myopathy 2021" cell.com/cell-metabolism/pd...
This study shows NAD+ normalized in these adult onset mitochondrial myopathy patients using Niacin. They were taking 750-1000 mg a day "All the subjects were supplemented with a slowly increasing dose of niacin, from 250 mg/day up to 750 or 1,000 mg/day for 4 months, and we continued the follow-up of treatment effect up to 10 months in patients" cell.com/cell-metabolism/pd...
"Niacin Restores NAD+ Concentrations in PEO Patients Niacin supplementation increased muscle NAD+ content 1.3- and 2.3-fold in patients compared with baseline after 4 and 10 months, respectively, and in the later time point NAD+ levels had reached the healthy control values (Figure 1B). In controls, muscle NAD+ content did not change, suggesting that steady-state NAD+ levels are tightly controlled in skeletal muscle (Figure 1B). Niacin supplementational so remarkably elevated whole blood NAD+concentrations both in patients (7.1-fold compared to baseline) and controls (5.7-fold) after 4 months (Figure 1C). The blood NAD+ concentrations reached an 8.2-fold increase compared to baseline after 10 months of supplementation in patients (Figure1C). The concentrations of all NAD+ metabolites increased in the blood of both patients and controls (Figures 1C–1H). Given that niacin increased the levels of muscle and blood NAM (Figures 1G and S2B) and ADP-ribose (Figure 1H), niacin was likely metabolized as NAM via salvage pathway instead of Preiss-Handler pathway, and it was effectively utilized by NAD+ consuming enzymes. The evidence indicates that niacin is a powerful NAD+ booster in humans, both healthy and diseased."
NAD+ is disrupted in PD patients "Progresses in both basic research and clinical trials of NAD+ in Parkinson's disease" 2021 pubmed.ncbi.nlm.nih.gov/339...
IMHO If there is anything that can potentially slow down the progression of Parkinson's disease it is vitamin B3 in the form of nicotinic acid or niacin.
Thanks Bolt_ Upright , great research .
Greetings from Italy.
Firenze , …puoi abbandonare il corpo ma non la vita. Semicit.
Thanks. I will revert to how I was going to answer your question: I don't think anybody knows for sure which is the best form of Niacin to use. Obviously we have beliefs based on clues. Personally, I attach some weight to whether the form of Niacin affects GPR109A, which NA does. Then some people choose NR as there seem to be more studies using NR.
But the bottom line, in my opinion, is nobody knows what, if anything, works.
You have seen results with nicotinamide. I would not discount that experience (but I would keep reading too).
I know you didn’t ask anyone else, but here is what is helping my HWP. He is on magnesium L-threonate and 210 mg magnesium citrate. He now seldom gets leg cramps. We added the mag citrate to help keep the possibility of any constipation problems occurring.
What brand B3 and Coq10 and amounts is she taking. We have not seen dramatic results from those, maybe because he has been in them for quite some time. (Several years of Coq10). I’m switching him over to Krill oil. He’s been in TruNiagen for almost 3 years with occasional breaks.
If things are going smoothly why would you want to change something?
My HWP was doing fabulous in December. I changed something and now things are not fabulous. We’re going back to what we were doing then and hopefully we can get some things under control again.
I must apologize for my previous comment. We all must do what seems best for our loved one. I don’t know what all you’ve tried or are dealing with so I am so sorry if I came across harsh or unfeeling. You need to do what you think is best for your WWP!!! This disease is so hard, stressful, and exhausting.
Lizzy I'm changing it to a lower dose, as always the lower dose if it still works, is better regarding ANY side effects and costs.The pills, to make it easier to take, each pill is 500mg and quite large, they have been split in half, so instead of 4 half pills, only 2, one half pill will be needed xx
I think I am so impatient and want to see results “yesterday” and with our most recent outcome of reducing/changing I’m just really paranoid right now.
So onward (hopefully) and forward we go never giving up!!!
I've never stopped researching about parkinsons, Looks like you're the same as me, may I say, not many people are. I'm amazed that people take it that the MDD is the know all.
You even questioned me, which was a great thing, shows your mind is thinking, well done.
Thank you! You are correct. Just when I think that I can have a “holiday” I stumble onto something else to look into or further investigate!
I also am shocked that so many (the majority!) do just what the doctor says without question!!! My HWP is so much better than when he was dx’d 3 years ago!!
B4 wife being diagnosed to be treated for Parkinson's and going to our local doctors seeking help for her anxiety, not knowing anything about Parkinson's, I mentioned her gait, he never took it on board, 3 weeks later, after he'd prescribed citolopram, and it not working, went back again and I mentioned her gait then he did a parkinsons test, grrrr.A year ago, seeing the MDD, I suggested because of her weight being below the BMI scale, perhaps my wife needed less levodopa and perhaps she didn't need the rasagaline that was prescribed 18 months ago( it boosts the levodopa, but causes dyskinesia), she disagreed because of my wife having the leg cramp (dystonia)
Last week, not knowing the leg cramp had gone, because of the b3 and coq10 I'd been giving her, she decided, not even asking about my wife's leg cramp ( dystonia) to take her of the rasagiline because of the dyskinesia.
We do have a good PA that got right on our dx and sent my HWP to a neurologist who was a waste of time and money! I spent 30++ years working in the medical field and one thing I learned is that conventional medicine does have merit, but you still have to step in and take care of yourself!!!!
At the moment I’m using magnesium citrate because it’s supposed to be the best for absorption . If that doesn’t work for you try some of the others! Everything seems to be trial and error with this blasted disease. I found out about magnesium when I turned the air blue after my leg cramped in my fitness class. The instructor suggested magnesium and to my amazement it worked. Hope it does for you as well.
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