What supps does everyone take?

[heapsreal]

MORNING

Benfotiamine 150mg - fat soluble form of b1 supposedly good for nerve pain.
Homocysteine formula - b6 100mg, folate 400iu, zinc 15mg, nac 300mg.
Lipoic acid 300mg- recycles antioxidants.
Q10 200mg - antioxidant
Nac 600mg - antioxidant
Acetyl L Carnitine 500mg
Vit K2 180mcg
Glucosamine 1000mg
Fish oil 4000mg
Salt tablets
Pregnenolone 50mg
Dhea 25mg

Night time before dinner

Homocysteine formula
VitE mixed tocerophels 400iu
Lipoic acid 300mg
Nac 600mg
Glucosamine 1000mg
FishOil 4000mg

At bed time

Melatonin 10mg - for its antioxidant effects.
Salt tabs

Probiotic course when on antibiotics and a week or so after stopping antibiotics.

As you can tell for me its about antioxidants which help reduce oxidation and hopefully inflammation and the damage it does.

Cheers.

 

[Hip]

My regular daily regimen is:

N-acetyl-glucosamine 1000 mg — has good anti-anxiety benefits
Selenium (as selenomethionine) 400 mcg — substantially reduces my ME/CFS fatigue and brain fog (see here)

Folinic acid 200 mcg — has mild antidepressant effects, I find. Low folate is linked to depression
Vitamin B complex — ME/CFS patients tend to be short on B vits, so that's why I take these
Acetyl-L-carnitine 1000 mg — I find this antioxidant reduces the inflammatory feeling in my head/brain

Amisulpride 12.5 mg — improves ME/CFS symptoms in a study; I found it effective (similar to Abilify)
Moclobemide 75 mg — antidepressant which has also been shown to increase energy in ME/CFS


Once a week:

Australian vitamin B12 methylcobalamin + adenosylcobalamin transdermal oil — reduces brain fog I find


Bed time:

Melatonin 5 mg taken 2 hours before bed time — I find induces sleepiness which helps get to sleep


In addition to the above, I am always testing out drugs, supplement and protocols each week, so will usually be taking other things. But the above are my regulars.

And sometimes for short periods of a month or longer, I may add on extra beneficial items, like cod liver oil, flaxseed oil, zinc, iodine (increases my energy a bit), lycopene (this antioxidant enters the brain and has a long half-life of 3 days), germanium sesquioxide (increases energy), turmeric (not the same as curcumin), transdermal magnesium, vitamin C, vitamin D, vitamin E, Q10, glutamine, pregnenolone, peppermint oil capsules (works well for my IBS-D), probiotics, etc, etc.



If I get a hit with depression, then I take several of these items:

Amitriptyline 5 mg — an old fashion TCA antidepressant which I find works well in low doses
Saffron 100 mg — several studies have found saffron as potent as pharmaceutical antidepressants
Manganese 3 mg — helps manufacture mood-boosting dopamine; I find it creates a more enthusiastic mood
5-HTP 100 mg — helps manufacture mood-boosting serotonin
High dose inositol 12 grams — helps manufacture mood-boosting serotonin (this one takes 12 hours to kick in, unlike the above antidepressants which kick in within an hour or two).

 

[gbells]

Here are a few I use and like.

• Curcumin (Innovix extended release)
• Licorice extract (tea)
• Nicotinamide riboside
• L-carnosine
• Ubiquinol
• Shalijit-extends ubiquinol
• Spirulina/primrose oil

 

[Wishful]

My only supplement at present is VitC, not for any benefit for ME, but because there isn't much in the way of fruits&veggies left in my diet, and I don't want my gums to bleed.

 

[Alvin2]

Acetyl Carnitine 3750 mg/day
Methylfolate 1 mg/day
Calcium Citrate 1200 mg/day
Vitamin D3 6000 IU/day
Melatonin 1 mg/day

Vitamin K2 1 mg/week
Vitamin E 400 IU/week

B12, keep an eye on when blood tests done every ~3 months.

Current experiment
Collagen 10g/day
Vitamin C 500mg/d

 

[heapsreal]

Acetyl Carnitine 3750 mg/day
Methylfolate 1 mg/day
Calcium Citrate 1200 mg/day
Vitamin D3 6000 IU/day
Melatonin 1 mg/day

Vitamin K2 1 mg/week
Vitamin E 400 IU/week

B12, keep an eye on when blood tests done every ~3 months.

Current experiment
Collagen 10g/day
Vitamin C 500mg/d

Acetyl carnitineis a big dose. Do you think it helps overcome bioavailability issues when used orally

 

[Alvin2]

Acetyl carnitineis a big dose. Do you think it helps overcome bioavailability issues when used orally

Its for cognitive function, it allows me to function somewhat. It has no effect on the physical functioning
I still can't read a book or watch TV or work off a list/recipe but it keeps me form being a complete vegetable.
I also need to keep increasing the dose, though its expensive to do so so i've kept it at this level.

 

[Pyrrhus]

For me, personally, I have strong effects from Acetyl-L-Carnitine (ALCAR) at a dose of only 16mg. (I started much higher and slowly lowered the dose to find a dose that didn't cause me to crash.)

I don't take it regularly, just when I need a strong boost.

 

[heapsreal]

Its for cognitive function, it allows me to function somewhat. It has no effect on the physical functioning
I still can't read a book or watch TV or work off a list/recipe but it keeps me form being a complete vegetable.
I also need to keep increasing the dose, though its expensive to do so so i've kept it at this level.

Interesting. Kids with mitochondrial disorders get prescribed doses like that and other mito supps lime Q10. Most people use much lower doses, maybe we all need to take higher doses??

 

[Alvin2]

For me, personally, I have strong effects from Acetyl-L-Carnitine (ALCAR) at a dose of only 16mg. (I started much higher and slowly lowered the dose to find a dose that didn't cause me to crash.)

I don't take it regularly, just when I need a strong boost.

Interesting, it has no energy effects on me at all.
And if i don't take enough its as useless as not taking any at all.

Interesting. Kids with mitochondrial disorders get prescribed doses like that and other mito supps lime Q10. Most people use much lower doses, maybe we all need to take higher doses??

I wish i knew why it somewhat helps my cognitive function.
Q10 has very little effect on me, when i first started taking it it helped the cognitive function but the effect died off after a few weeks. I found if i stopped taking it for a few months it would often work again for a shirt time. These days though that effect is gone, if i stop then start again it does nothing anymore for cognition. It never appreciably helped with energy

 

[Judee]

I wish i knew why it somewhat helps my cognitive function.

Webmd says it might increase the actions of some blood thinners. Usually when I read that about something, it makes me think that something is also a blood thinner.

@Lassesen talks about this under the heading:
Patient has known Hypoperfusion

https://cfsremission.com/2016/02/28/not-a-treatment-plan-not-a-protocol-a-model/

Here's another page where he talks about the prevalence in ME/CFS patients of having hypercoagulation. He said somewhere on his site more recently that there is a lab in Germany that will now test for this.

Dr. Davis also talked about something with the blood where the cells were more resistant to passing through blood vessels. I wonder if that would also be because of hypercoagulation.

 

[Alvin2]

Webmd says it might increase the actions of some blood thinners. Usually when I read that about something, it makes me think that something is also a blood thinner.

@Lassesen talks about this under the heading:
Patient has known Hypoperfusion

https://cfsremission.com/2016/02/28/not-a-treatment-plan-not-a-protocol-a-model/

Here's another page where he talks about the prevalence in ME/CFS patients of having hypercoagulation. He said somewhere on his site more recently that there is a lab in Germany that will now test for this.

Dr. Davis also talked about something with the blood where the cells were more resistant to passing through blood vessels. I wonder if that would also be because of hypercoagulation.

Is thickness of blood covered by a standard blood test?
If not what would i ask for to test it?

Also i noticed that back when i tried high doses of Omega 3s it didn't help, i believe fish oil is supposed to be a blood thinner?

 

[pamojja]

Is thickness of blood covered by a standard blood test?

The standart for blood coagulation tests in my country are:

Quick, prothrombin time - PT
INR (Quick)
Partial thromboplastin time - PTT Actin FS

For example the normal range for PT is 70-120%. However, somewhere I read for someone on the anticoagulent warfarin up to 240%.

Also i noticed that back when i tried high doses of Omega 3s it didn't help, i believe fish oil is supposed to be a blood thinner?

Natural blood-thinners in my personal #1 experience are very weak. Once I marked about 60 natural ingredients I take, alledgedly all acting as blood-thinners of an extensive list of Natural Standart collaboration. Posted here: https://www.longecity.org/forum/topic/62930-which-supplements-are-blood-thinners/#entry614079

But only if I added 1 baby-aspirin (80mg) I got nose-bleeds and blood in stuhl. Which of course might be confounded by the many natural blood-thinners I already take. Which however on their own never made me bleed.


PS: taking also phosphatidyl choline together with the baby-aspirn in my case prodects from its bleeds.

 

[Alvin2]

Quick, prothrombin time - PT
INR (Quick)

Prothrombin Time - International Normalized Ratio: A bit above mean.

Partial thromboplastin time - PTT Actin FS

No data

But only if I added 1 baby-aspirin (80mg) I got nose-bleeds and blood in stuhl. Which of course might be confounded by the many natural blood-thinners I already take. Which however on their own never made me bleed.

This is a low risk thing to try. I could buy a bottle of low dose aspirin though i only need a couple tablets. I wonder if i can get just a few tablets somewhere.

 

[pamojja]

Sure, any pharmacy sells aspirin in any size. If I remember right, LEF sells a 360 pill bottle for something like 3 bucks. Swanson too.

But do not underestimate the risk of aspirin. In the US alone about 60 people die from bleeding because of aspirin a year. Something all vitamins, minerals, amino-acids and phyto-nutrients in supplements taken together could not accomplish in many decades.

 

[Alvin2]

Sure, any pharmacy sells aspirin in any size. If I remember right, LEF sells a 360 pill bottle for something like 3 bucks.

It ain't that cheap here in Canada

But do not underestimate the risk of aspirin. In the US alone about 60 people die from bleeding because of aspirin a year. Something all vitamins, minerals, amino-acids and phyto-nutrients in supplements taken together could not accomplish in many decades.

Vitamins and supplements can also cause toxicity but your point is well taken.

 

[pamojja]

Vitamins and supplements can also cause toxicity

Sure. But take also a look at this post: https://forums.phoenixrising.me/threads/am-i-right-here.50197/#post-830782 for an estimate of an incredible lower real risk. If taken responsibly.

 

[Judee]

Be careful if you take aspirin regularly. If you develop bleeding from something like diverticulitis, doctors may take you off of it suddenly but that significantly increases your risk of stroke which is what I think may have happened with my mom.

Plus, the cardiologist said that aspirin isn't really a blood thinner but an anti-inflammatory. (Don't quote me, I'm just repeating what he said when I asked if there were alternatives.)

Something better to try might be garlic or low dose vitamin E. I think those actually do thin the blood. (Again, don't quote me. I'm not one of the bio-techy brainy people here at PR.)

 

[Alvin2]

Be careful if you take aspirin regularly. If you develop bleeding from something like diverticulitis, doctors may take you off of it suddenly but that significantly increases your risk of stroke which is what I think may have happened with my mom.

Plus, the cardiologist said that aspirin isn't really a blood thinner but an anti-inflammatory. (Don't quote me, I'm just repeating what he said when I asked if there were alternatives.)

Something better to try might be garlic or low dose vitamin E. I think those actually do thin the blood. (Again, don't quote me. I'm not one of the bio-techy brainy people here at PR.)

Vitamin E had no effect on the physical or cognitive issues.
Plus if the Aspirin works i would not take it long term, but it would provide evidence that can be used to develop a treatment regimen since i would then know what to target.

 

[JES]

It ain't that cheap here in Canada

Vitamins and supplements can also cause toxicity but your point is well taken.

You could try digestive enzymes like bromelain, nattokinase or serrapeptase. These are generally considered safer than pharmaceutical blood thinners and act in slightly different way.

I had an interesting experience when I first tried bromelain, I suddenly experienced a massively improved blood flow to my extremities and the brain fog cleared up as well. It was a very weird sensation. Unfortunately, I started developing something described like a herx reaction while on them and over time got worse. Like with every treatment I've tried, the benefits tend to wear out over time, but it's perhaps worth a shot.