Recently added the following to my husband’s routine and he seemed to be more alert but this morning saw his left leg shaking intermittently
1. Coffee cherry 200 mg increased to 2x a day
Suppose to increase BDNF by 141%
2. Ubiquinol 200 mg increased to 3x a day
3. Tryptophan 1000 mg at bed time
4. NAC 600 mg in the morning
Could any of these be causing it?
He also started the coronet duo a week ago.
I was thinking of starting him on tyrosine but have no idea of dose
My husband has just started the Coronet Duo also, we are not changing any meds or supplements during this time so we don’t muddy the waters so to speak. Any improvement can then be attributed to the Cornet. It’s tempting to throw everything at PD but one thing at a time and give it a decent amount of time to gauge effectiveness. He is out walking every day without me having to guilt him into it and he has purchased the Therapad today, he seems to like the science behind red light therapy, he’s happy it’s not another damn supplement to swallow! Maybe go back his previous supplement routine and look at adding others in a few months, and then one at a time.
Thank you for your reply. I increased the coffee cherry to twice a day as I thought that having it cover 24 hours a day would be better. He was on one capsule for last 6 months.
The ubiquinol was increased because Dr Shallenburger mentioned that 5 capsules of ubiquinol 1000 mg would be equivalent to 2000 mg and that would stop any progression.
The L tryptophan was added to improve sleep as suggested by a member.
NAC was added after the recent discussion on NAC.
There was an obvious improvement before I started the Coronet. He seemed to be faster in reflexes, had better balance and better sleep. I think it’s a combination of factors and not any single factor. I remember another member Silvestro who is not active here anymore took a large combination of supplements to conquer PD and returned to work.
I hope that the Coronet will restore his sense of smell and bring on more improvement.
Just that seeing the leg tremor really frightened me. Will keep you posted on the coronet
I’ve heard that NAC is most effective if taken in the evening.I have coffee cherry tea.
It tastes awful!
I find it to be stimulating. Perhaps the capsules are as well?
Millbrook,The little you have said, that his leg was shaking in the morning, doesn't sound like restless legs syndrome. I don’t know but could it just be leg tremor? What it is makes a difference as to how to treat it.
Thanks for your reply Hikoi. I will monitor and pray. I hv no idea what it is and will have to do a lot of reading up to check.
I agree with Hikoi - restless leg syndrome typically bothers people at night. Also it is responsive to Parkinson's meds.
This may be the result of the increased dose of coffee cherry. At my post of coffee and Parkinson's, several people commented they quit coffee because it increased their tremor:
healthunlocked.com/cure-par...
PLMD? It's somehow related to restless leg syndrome, but it's involuntary movement instead.
Sorry, what is PLMD?
PLMD=Periodic Leg Movement Disorder. It is the involuntary movement cousin of RLS.
Thank you.
If he has CBS gene mutation he may not handle NAC and feel worse. Try removing it and see if that improves his symptom. Also avoid ubiquinol in the PM before bed as it could contribute to insomnia.
As per your suggestion have stopped NAC and the evening dose of ubiquinol. Thanks for your feedback
It seems you’re on top of things with your astute observations of your husband's symptoms with an effort to stop the progression. I do hope the above helps for at least the recent development but one thing that might help even more may be to incorporate a device such as FitBit. I was not a fan of wearing an electronic device to bed until I tried it and found it extremely helpful. It measures objectively how well you slept (deep and REM), oxygen saturation/variations. heart rate variability, resting heart rate, skin temp, etc. It actually helped me to figure out and correct a few supplement issues with my own family through objectively changing trends, such as mannitol higher dosage depleting potassium, supplements causing insomnia, etc. I have the Charge4 model that’s slimmer and it is more convenient than an Apple Watch for longer term tracking purposes. I’d also suggest that you try Jarrow’s zinc balance (with Cu, improve zinc homeostasis) and add a good methyl b complex (I prefer PE B-Complex Plus) to go with the B1. They work in synergy for optimal effect. If the daytime tremor or twitching does not improve, the next to suspect and rule out would be electrolytes- possibly potassium deficiency (intracellular) or boron.
Thank you very much for your detailed reply. He has an Apple Watch and it was this watch that alerted us to his a-fib. I have just ordered the basic B complex by Thorne which has 110 mg B1 hcl and B6 at 10 mg.Actually with a-fib there must be adequate potassium and magnesium as well. So he has a banana daily and in addition to his Mag tech he has 5-6 prunes, 3 Brazil nuts daily for his selenium all good source of potassium and magnesium.
After leafing through The A-fib cure I read that increased blood pressure meds can deplete potassium and magnesium- and cause a-fib in addition to anxiety , which is what happened.
He is also on flecanide for his a-fib and some people hv mentioned that they had tremors which they attributed to flecanide. Sigh.
Sometimes I find it all very overwhelming. Essentially true healing can only come from God
I saw that you’re already supplementing Mg, which is a required cofactor for myriad enzymes processes including B1. I understand it gets overwhelming but it seems you’re ahead of many with your proactive approach. A few things - Brazilian nuts are not a reliable source for selenium as the amount can vary greatly depending on where they’re grown/from, so you could easily overdose or underdose. Also when supplementing selenium you also need to be careful not to get deficient in iodine. I use Lugol’s 2% in morning coffee, just a few drops 5 days a week. I personally find balancing selenium and iodine the hardest since selenium can build up and get toxic while it’s also needed. I do periodic hair mineral analysis to watch for that. Eating potassium rich foods doesn’t ensure restoring intracellular potassium deficiency - this also may be a part of why your husband couldn’t tolerate mannitol. A few bananas a day wouldn’t even touch it, and a lot of PWP have trouble absorbing the mineral through foods. To kick start restoring the deficiency, consider supplementing potassium chloride or citrate. The chloride form may be easier to use and they come in powder form (NOW) that you can easily add to water.
Wow. I was hoping that getting it from food source would be better than a capsule. Looks like I will have to revert to the potassium magnesium capsule for heart health. When his a-fib started his potassium levels were low. I think I will put on hold the Brazil nuts once they run out.
Thank you so much for your input. So much to digest , I will sleep on it. Much appreciated.
Yes getting the K right should be high on your list especially after hearing your history. K deficiency certainly can contribute to tremors, twitches and RLS. HD B1 can also contribute to K loss. Btw, it is absolutely better to get k through foods so don’t stop that while using supplement to help restore the deficiency.
I just increased my B1. I’ve responded so well to it! What kind of K do you recommend. I just added the NOW potassium to my shopping cart.
I use both the citrate and chloride form - either will do but I tend to think citrate is more gentle and also helps with the kidney issue. Be careful with K supplement - think less is more and try to get most of your K through food, especially the greens. Be sure to check your D level (helps to retain K), and also zinc (Zinc Balance) that helps with K level along with Mg.
What you are describing sounds more to me like garden variety parkinsonian resting tremor of the leg, though intermittent. Whilst anything is possible, i'd put PD at the top the list of possible causes. Good news is that a) its intermittent and b) in my experience, leg stuff is a lot easier to live with (i.e ignore) than arm and hand stuff. The extent to which tremor is effectively treated with PD meds varies by the individual.
Re RLS, this is from the thread PB linked above and it is very consistent (eerily consistent, actually) with the description given to me by a family member (who is also a PWP): "Just before I was diagnosed, I had RLS to the point of not sleeping for multiple days consecutively. I would have to walk around my dining room table for hours in order to keep my legs free from the "creepy crawlies". "
I was hoping that red light , B1 and ubiquinol will stop PD in its tracks
Im confused. You say below that your husband has not been dx with PD. What is it that leads you to believe he has PD?
My dad had PD so I have some knowledge of it.There are some symptoms that come to mind:-
1. Loss of sense of smell more than 10 years ago. Could not ascertain if it was due to regular use of nose spray given by doctor
2. From 2018, poor lane discipline when driving
3. Frozen facial muscles
4. He’s always been clumsy but balance seemed to be affected especially on sloping surfaces
5. Active dreams and thrashing and hitting out in sleep
4. General slowness
5. Anxiety
6. Frequent night urination
We started on vit B1 Feb 2019 and his judgment n lane discipline improved tremendously, facial expressions back to normal, balance has improved. Nocturia has been helped by Xatral
Overall improvement with 100 mg of B1. Sense of smell not fully restored
and he does have active dreams now and then.
We did see a neurologist when his vertigo had to exclude a stroke. He said one side seemed to be slower but he could not say definitively if you will or will not get PD. It’s a long process and there’s no point worrying about it though he did add that acting out dreams is one of the defining factors. A good doctor manages your fears until your concerns need medication. So, in the meantime we will do the best we can . My husband is 64
Oh ok. Yes, i understand your rationale.
Like everything else that might come and go, maybe dont worry too much about the leg unless it impacts his QOL? Sounds like youve a lot on your plate as it is and it might just be one of those random things that never turns into a big issue.
When you said added, is he already on lots of other things too? Or is this all?
Yes he is on heaps of other things. Here is the list
1. Curcumin 1000 mg
2. Vitamin B1 hcl 100 mg mon-sat
3. Coffee cherry 200 mg
4. Ubiquinol 200 mg twice a day
5. Tocotrienols 500 mg divided in 2 doses
6. Clostridium butyricum twice a day total 8 tablets
7. Mag tech 3 capsules= 200 mg magnesium
8. Melatonin 20 mg- reduced from 40 mg because of active dreams
9. Vit D and MK 7 5000 mg mon-fri
10. Fenbendazole 225 ml mon-fri
12. Milk thistle Thompson’s 4.2 g once a day
13. L tryptophan 1000 mg at bedtime
14.turkey tail and Maitake extract
15. Wasabi which hv anti cancer properties
In addition to these he has his blood pressure meds, cholesterol meds and xatral for prostate. He had bladder CA , atrial fibrillation and not on any medication for PD as has not been diagnosed
Quite a comprehensive list of supplements. So I am hesitant to add any more. Nonetheless may I suggest you
(1) swap out the ‘B1 HCL 100mg’ capsule with a B-Complex that incorporates 100mg of B1. Get a trusted brand. B-Complex discussion here
healthunlocked.com/cure-par...
(2) add a prebiotic powder, given the problem with Mannitol. This to increase the growth ‘good bacteria’ and butyrate production. These powders can be quite gritty, but this may prove acceptable amazon.com/gp/product/B00BG...
(3) consider a high potency Omega-3 capsules, if diet is low on this nutrient.
Love your proactive nature 🌹💪🌹
Thank you Casey for your insights. I will order the B complex you suggested and will drop the coffee cherry and NAC.
I have not included fish oil (more capsules) because carrafibdietinfo.com mentioned that it did not help.
I include oily fish once a week (will try to make it twice a week ) 3 Brazil nuts daily for his selenium, 5-6 prunes for his bone health, 1 tsp pure sesame paste too.
Must pray for wisdom. Like Olive mentioned it’s just so many capsules to take. 🥵
I ordered the basic B complex by Thorne as the B6 is the right form and only 10 mg with thiamine 110 mg
Millbrook,
Mannitol can increase butyrate and butyrate increases BDNF :
healthunlocked.com/cure-par...
Art
Art, mannitol gave him stomach discomfit . He had stomach problems for years n was on numerous stomach medications until he took the probiotic clostridium butyricum and that resolved the bloatedness and wind
Perhaps he can tolerate mannitol now as clostridium butyricum and mannitol can generate even more butyrate. If mannitol is still not doable, Xylitol might be and it also increases butyrate.
Btw, has he ever tried alpha lipoic acid for the RLS?
Art
We have not tried ALA. Hoping that it’s a one off thing. He is having his cystoscope next week and that will occupy our thoughts till then🙏🏻
Millbrook,
The caffeine in the coffee cherry is counterproductive if it really is RLS.
Art
Art, would melatonin do the same thing as curcumin? Maybe I should drop that
Also for tryptophan 1000 mg what is the equivalent that would be to a melatonin dose?
They have some effects in common, but definitely not the same total effects and then curcumin has poor bioavailability that may be even less. I remember seeing cancer studies years ago where they used 8 grams of curcumin on the daily whereas melatonin at 1 gram/day would be considered a large amount.
I don't know the answer to your tryptophan/melatonin question.
Art
Melatonin constricts blood vessels, so it could easily make RLS worse.
thank you for your reply. Since he has been on PS128 his internal tremors and leg shaking have stopped
Hi Art, I know this was from 4 months ago, but thanks for posting this. Being newly diagnosed, I have a lot to learn. I’ve been having a TBS of Mannitol in my morning coffee bc I had read somewhere along the line , it helps . But I didn’t know what BDNF stood for so I looked it up, which led me to articles that talk about certain gene variants affecting BDNF ( the variants lessen the ability to make BDNFs, etc. which in turn led me to look them up on 23&me. I found out I in fact have the gene variants. In the long run, this information helps me tremendously! I now know I have to find ways to make more since I know my body is definitely lacking them. In my searches I also came across articles that people with this variant, doesn’t respond as well to PD medication, which explains a lot. I have tried Azilect, Selegiline and now C/L. I had severe side’s effects when starting on a very low dose ( 1/2 tablet 3x a day 25/100 cut in half. We restarted at one 1/2 a day for a week, then two 1/2 a day for a week. I am now taking three 1/2 a day ( for 2 weeks now), and there has been no improvement in my motor symptoms. I stopped supplements because I was trying everything but the kitchen sink. I confused myself taking so many and not knowing which were helping and which were not. I will start again soon, but one at a time to gauge it’s helpfulness. For now, I will start researching how to increase BDNF. That seems to be extremely important to know/ and start. Thanks again! 😊
Totally agree with you. I divide the supplements into morning, tea time , after dinner and before bed. But when you are dealing with bladder CA, atrial fibrillation from the anxiety of the CA treatment and PD it’s hard to choose what to drop. Maybe I will drop the coffee cherry completely in addition to the NAC now that I have the coronet duo
Millbrook, what is your aim with all these supplements when considering PD. Is it to treat symptoms or are you thinking it will stop progression? I take about 10 pills a day and by night time I’m over it.
Actually Hikoi, it is both. When he was given too much B1, he was drooling and his face was even more frozen. That was frightening. With the right dose of B1 his balance is better, less stiff, facial muscles more relaxed, you can see his smile come through. For PD, he is only taking vit B1 ( I am changing that to a B complex) ubiquinol, probiotic clostridium butyricum and red light therapy. All the other stuff is for CA and a- fib.
I feel like a tormentor
If he has PD symptoms that are impacting his QOL to the point where you think he needs those things, he should be seriously consider PD meds. Given what you describe, they wont be hard to get (obviously he has all sorts of things going on that need to be considered but that is what doctors are for) as specialists use them in diagnosis.
The "cause'' of PD
Lyrica for Restless Leg Syndrome
I am questioning the dosage of B1. Am I on the right track?
Restless Body Syndrome
Pantothenic acid deficiency may be the cause of Parkinsons
