Supplement stack help/ advice: Hey everyone... - Cure Parkinson's

Cure Parkinson's

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Supplement stack help/ advice

SAGoodman profile image

Hey everyone! As some of you know I have been diagnosed a PWP since July, but have been dealing with the symptoms for 2+ years.

I really need everyone's help or advice on my supplement stack, as it's to the point I'm getting overwhelmed with taking handfuls a day.

Here is a list of what I'm taking, and what I'm taking it for, my main concern is that I'm worried about a supplement I'm taking being counter-productive to another.

Morning:

General Health:

Morning Complete (Prebiotics, probiotics and super greens)

For PD:

Mega EFA+CoQ10 1300mg

B1- 1000mg

Magnesium L-Threonate 96mg

DopaBoost 2 capsules

D3- 5000iu

For Low Testosterone:

Zinc Picolinate- 30mg

D-Aspartic Acid

Tribulus Terrestris 750mg

Lunch:

For PD:

B1- 1000mg

D3- 5000iu

For cognitive:

Vinpocetine- 20mg

Lithium Orotate- 5mg

Citicoline 500mg

For low testosterone:

DHEA- 50mg

Ginger Root- 550mg

Fenugreek- 610mg

Ashwagandha- 1300mg

Night time:

Melatonine- 10mg

L-Theanine 400mg

Since diagnosis I have been getting almost chronic tired with very little effort, and have been tested to be on the low-side of testosterone levels.

Have been battling memory issues more than I would like to admit.

Still suffer from tremors on the right arm/ hand, sometimes right leg and face.

I know this is a lot, but really leaning on my PWP community to help steer me in the right direction!

Thanks for all of your knowledge and testimonies, first thing I read in the morning!

31 Replies

You probably need TRT for the testosterone. Not without its drawbacks, though.

Why not try PD meds for PD? Depending on your individual digestion, the dopaboost might not be enough. Much of the rest of what you are taking is of questionable value in the absence of PD meds and evidently it isn't working that well.

SAGoodman profile image
SAGoodman in reply to kevowpd

Just for clarity my PD symptoms or reactions are fairly well under control. My reason for this post was to rule out and/or ad any additional suppliments needed or not needed. I would really like to remove some rather than add any additional, but if anyone has any thoughts please share!

SAGoodman profile image
SAGoodman in reply to SAGoodman

Also I might ad that a very wise person. Once said "do you even know if you need to take prescription meds for PD"?With that said, I have been able to balance everything except lack of energy. Serious drain of mind and body by the end of my work day..

You say that you take super greens. What’s the brand?

SAGoodman profile image
SAGoodman in reply to MissRita

It's Activated You brand, called Morning complete

MissRita profile image
MissRita in reply to SAGoodman

Cool thx!

That is an impressive stack. I have to ask, you said your fatigue started after "diagnosis". When did the supplements start?

Bolt, to be fair I have had slowly declining energy for a few years. Now its getting to where I need 4 days to recover from strenuous activity. I truly believe it's from my low T levels, but my general Dr doesn't see a need for TRT.

park_bear profile image
park_bear in reply to SAGoodman

Your fatigue is not necessarily due to low testosterone – this is a common Parkinson's complaint. I have suffered from fatigue at times, terribly so early in my diagnosis. Not sure what caused it to resolve. I have a fat supplement stack and swallow handfuls daily, and that is okay with me.

My list of interventions that may help reduce progression and symptoms. Thiamine, exercise and cinnamon particularly helping me:

• Vigorous daily exercise

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

SAGoodman profile image
SAGoodman in reply to park_bear

Park Bear thank you so much again for your experience and knowledge. I feel the HDT has had the most dramatic effect on my symptoms out of all I have been taking. I have seen the cinnamon in other posts also and would be ok adding it to my stack and try. Is there any specific kind to use?

SAGoodman profile image
SAGoodman in reply to SAGoodman

I forgot to mention that I also do LSVT Big every morning.

park_bear profile image
park_bear in reply to SAGoodman

Please read my report at the link before proceeding with trying cinnamon. It is essential to use the Ceylon cinnamon because the Cassia cinnamon can be toxic in quantity. Depending on how much you decide to use, it is likely to end up being a lot of capsules and you already have too many. In any case I believe anything that is good to eat should not suffer encapsulation. So I put a measured amount in my oatmeal after cooking it and just before eating. The Ceylon cinnamon is mild and can go with a variety of things.

Also on the subject of reducing capsules I get my lipids by adding them to foods - flaxseed oil, MCT Oil and fish oil. The fish oil I only add to fish because it is too fishy otherwise. The other two are great in any place a person would use butter or the like. Flaxseed oil must be kept chilled and not heated for cooking.

SAGoodman profile image
SAGoodman in reply to park_bear

Park bear thanks again for the information, and also the recomendations, always appreciated!

LAJ12345 profile image
LAJ12345 in reply to SAGoodman

We have cinnamon also in a drink with little hot chocolate. You have to stir well as it doesn’t dissolve.

"fat supplement stack": Please tell us more!

Nothing terribly interesting. Vitamins ABCD and E and K, trace minerals, NAC etc. The stuff that I think really makes a difference in Parkinson's I linked to above.

It certainly seems like there is room to cutback on your current regimen, but it is a tough call when your symptoms are well controlled except for the fatigue factor.

I would like to mention a common issue in PD and that is low vitamin B-12 which seems to be common in PD and can definitely cause fatigue and tiredness among other issues :

ucsf.edu/news/2018/03/40999...

The fastest way to determine if this is the reason for your fatigue is to ask your primary care provider to give you a B12 shot. If your energy picks up after that shot, you have one clear cause that is usually easily correctable and your doctor can help you to resolve the issue. Oral supplements will not be as definitive as a B12 shot in making that determination.

What is your sleep like as sleep disturbances are common in PwP as is Sleep Apnea (SA). A PD friend once told me that he would give up his wife before he would give up his C-Pap machine and I think he was serious! He said without his C-Pap, he had constant fatigue. He had no clue that he had SA until he talked to his doctor about it and he told my friend that SA was very common in PwP. He tested him and put him on a C-pap which resolved his SA related fatigue.

The following article says that up to 40% of PwP have SA :

parkinson.org/Understanding...

Often times obesity plays a role in SA , but obesity is not required in PwP in order to have SA.

In any case, these are two issues that are relatively easy to test for that you can discuss with your doctor. The B12 will be easiest and quickest to test with just one shot and then your doctor can look into SA.

Lastly, if you can tolerate it, you might consider increasing your melatonin dose as melatonin is produced directly in every mitochondria of the body where it neutralizes ROS very quickly before it can do much if any damage to the mitochondria which should help keep ATP production up. Unfortunately melatonin levels decline sharply with age.

Good luck and please update us as you search for a resolution to your fatigue.

Art

SAGoodman profile image
SAGoodman in reply to chartist

Thank you very much for the information, and for giving me some easy test options! I am actually scheduling a sleep study to determine if I have SA, so it's good to hear such positive results!

My husband has taken and still takes many of those and has been quite low on energy for years. Just recently it is like a lightbulb has gone on and his motivation and energy levels have sky rocketed and he is feeling so much better. Please see thread healthunlocked.com/cure-par....

I put it down to either his red light coronet helmet, ambroxol, Ceylon cinnamon, hardys extra vitamers multivitamin, hemp oil, or rhodiola rosea which were all started around the same time, or possibly a course of toxaprevent he took for 3 months earlier in the year clearing up some kind of gut problem. Unfortunately I have no idea which was the thing that helped but the improvement is miraculous. Even my teenage sons have discussed his different personality with my daughter who hasn’t seen him for a while. She said they say he completely a different person.

He is now like a whirlwind hanging washing, doing dishes, doing admin etc compared with 6 months ago when he was always needing a nap and was too tired to do anything.

SAGoodman profile image
SAGoodman in reply to LAJ12345

Thank you so much for your thoughts and testimony! I currently do not take any of the above suppliments you meantioned, and I thought my stack was heavy until I seen your picture of your husband's stack on the other thread you linked!My wife and kids say I'm more moody, but I do not have any suicidal thoughts.

I am constantly tired, even though I always get 8+ hours sleep. I used to wake early on my own and now its a struggle to wake up with an alarm clock.

LAJ12345 profile image
LAJ12345 in reply to SAGoodman

What is your daily regime? We find getting off to an early morning walk in the sunlight , all weather makes a difference.

Things to watch are glasses that have built in darkening which cut out the light which defeats the purpose.

Hubby has an air filter in his room going all the time so he isn’t breathing any toxins.

Winter has always been like hibernation time with very low energy levels but this time he got though without deterioration.

He had been on most of the things in the photo for some time but the ones in the above list are the recent ones that seemed to help with energy levels. But it could have been synergistic with the ones he was already taking.

Do you eat sugar, gluten, seed oils, processed food, what is your diet like? Mitochondria are your energy cells so you have to feed them and remove any toxins that are harming them.

I listened to a lot of of Ari Whittens podcasts and looked at his products as they are designed for energy and healing mitochondria. Postage is too dear to NZ from the US so I have gone through ingredients in his energy supplements and most of them are now in hubby’s stack. Rhodiola was the recent one from there and Ari highly recommends it for energy. It might have been the one that did the trick.

store.theenergyblueprint.com

But adding a new supplement isn’t going to fix you unless you remove anything causing mitochondrial damage . Try and see if you can find sources of toxins , infections , unhealthy habits and remove those too.

SAGoodman profile image
SAGoodman in reply to LAJ12345

Thanks for all your thoughts amd information! I do try to eat a high antioxidant diet, and really my only bad habit is alcohol socially. I will have to study what Ari recommends and see where I'm at, thanks again!

KERRINGTON profile image
KERRINGTON in reply to LAJ12345

I haven't a hat yet, but I am convinced light helps a lot. When ever I do a 5-6 hr car trip in full sun, the following day I feel pretty good.

LAJ12345 profile image
LAJ12345 in reply to KERRINGTON

One thing I found with my husband in previous year is that in winter he had started to wind down as if for hibernation. Football season would start so he would get all keen and go and watch our 2 sons games and sometimes an adults game in the afternoon. After being inside most days he would be outside in full sun all day. After that he would get quite sick and that was the beginning of winter deterioration he suffered each year. Another time in summer we went on a fishing trip and had bright sun for hours and was very sick. I’m wondering if it caused mild seratonin syndrome having so much light while on an SSRI.

B12 would be a good addition and I believe the duo coronet helped me a lot

I've decided to stop all supplements unless I test deficient.

Here are my suggestions. See my comments * below.

Morning:

General Health:

Morning Complete (Prebiotics, probiotics and super greens)

For PD:

Mega EFA+(CoQ10 1300mg)- *Ubiquinol may be a better option. ubiquinol.org/ubiquinol-vs-...

B1- 1000mg

(Magnesium L-Threonate 96mg) - *move Mg LT to bedtime. helps with relaxation and sleep. For daytime, try other formulations such as Mg Malate instead.

DopaBoost 2 capsules

(D3- 5000iu) - *if you're not sure of your blood vitamin D level, reduce to one dose of 5K/day and add vitamin K)

For Low Testosterone:

(Zinc Picolinate- 30mg) - *balance with copper or try Jarrow's Zinc Balance instead.

See more detail healthunlocked.com/cure-par...

(D-Aspartic Acid) - *try stopping for a period

(Tribulus Terrestris 750mg) - *try stopping for a period

Lunch:

For PD:

B1- 1000mg

(D3- 5000iu) - as above

For cognitive:

(Vinpocetine- 20mg) - *try removing for a period

Lithium Orotate- 5mg

Citicoline 500mg

For low testosterone:

(DHEA- 50mg) - *try removing for a period

Ginger Root- 550mg

(Fenugreek- 610mg) - *try removing for a period

Ashwagandha- 1300mg

Night time:

(Melatonine- 10mg) - *unless having issues with sleep, try reducing the dose to 5mg or less for a while. Melatonin is a hormone and may affect other hormone productions and cause grogginess in some people. ) mdpi.com/1420-3049/23/2/447...

L-Theanine 400mg

---

*Things to try adding -

As Art suggests, B12 deficiency is probable as well as B6, etc. Try sublingual methyl B12 and/or try adding a good methyl B complex such as Pure Encapsulation's B Complex Plus to work in synergy with your B1 supplementation.

Check your potassium level to see if in a lower range. Adjust the food intake for higher potassium or try supplementing Potassium Citrate or Chloride to help kickstart. With high dose B1, be sure not to be deficient in Mg and K.

Try adding Boron for testosterone. Many are deficient in this mineral. Ideally, get tested for Hair Mineral Analysis for other deficiencies and toxicity. healthline.com/health/boron...

evenbetternow.com/proddetai...

For other items that you try removing for a period (a few weeks), add them back one at a time to track their effects.

Most importantly be sure you're not sedentary and try walking outdoors (preferably early in the morning ) at least 3 times a week.

healthunlocked.com/cure-par...

SAGoodman profile image
SAGoodman in reply to rescuema

Thank you very much for your recommendations and knowledge! Will look through your recommended changes and see what I can do, again Thanks for taking the time to go into such detail!

rescuema profile image
rescuema in reply to SAGoodman

One addition to rule out - also check for your thyroid health as it can definitely contribute to all your symptoms. If the thyroid issue is ruled out by your physician, try adding Lugol's iodine. Start slow, just 1-2 drops of 2% Lugols in the morning in tea/coffee 5 days a week.

journals.sagepub.com/doi/10...

healthline.com/health/iodin...

Adjusting B1 and a low dose Sinemet should be able to take care of fatigue and all other non motor symptoms.Are you rigidity or tremor dominant?

Do you have drooling? Has your voice changed? How is your swallowing ? Any dystonia? Sleep?

SAGoodman profile image
SAGoodman in reply to Kia17

Right side tremor but almost under control at current state.No issues with anything past chronic fatigue, and was worried my suppliments were causing some of the issue.

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