-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
Not directly but it definitely helped lower inflammation and contributed to less pain and better sleep.
wabi-sabi
Senior Member
- Messages
- 1,484
- Location
- small town midwest
Curcumin made the sensory sensitivity and spasticity much worse. Couldn't wait until it was out of my system. So jittery and overstimulated- it didn't do anything for cognitive function.
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
Has anyone else noticed that muscle fasciculations get more frequent on turmeric?
wabi-sabi
Senior Member
- Messages
- 1,484
- Location
- small town midwest
I should clarify- these bad effects happen with a curcumin supplement. If I make up a batch of Dr Weil's golden milk, no ill effects. But on the other hand, maybe no effects at all from that other than staining my kitchen yellow.
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
I think I know why. Dr. Weil's recipe is for turmeric, a poorly absorbed form of curcumin. Indians traditionally use turmeric as a food preservative since many don't have refrigeration but it has problems from a short half life and poor absorption. So you weren't getting enough in your tissues to trigger the fasciculation. The supplement is higher absorbed curcumin (C3, Long Vida, theracumin, merivia) so you were getting much more. Fasciculation is part of the natural defense process of apoptosis which ebv, HHV6 and bartonella block to sustain their infections. In my initial stages of SEIDs I had fasciculations all over my neck and shoulders, then as the disease worsened it abated and I got sicker. The reason curcumin increased the fasciculation is because it was allowing those cells to die off. This releases cytokines which make you feel sicker. One problem with curcumin is that it doesn't address other pathways that are blocked by these organisms so it doesn't totally clear them, it just lets the battle wage halfway so the organisms keep reinfecting. Waging an immune response is very energy intensive so it gives fatigue.
https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/anti-inflammatory-golden-milk/
https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/anti-inflammatory-golden-milk/
Last edited:
wabi-sabi
Senior Member
- Messages
- 1,484
- Location
- small town midwest
So the question is... Is curcumin supplement causing these spams because the dose is too high, compared to very little absorption in the golden milk or is curcumin/turmeric not the right thing to take at all?
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
or why not let the cells fight and manage the cytokines with rest and taking naproxen sodium (Alieve-adult dose is one pill twice daily) to see if it can improve your condition? Also take a day off if it gets too much. I don't think it's a cure but it might help slow the progress of the infections if you are willing to tolerate it.
Last edited:
wabi-sabi
Senior Member
- Messages
- 1,484
- Location
- small town midwest
@Bluejay Well, you could try them and report back to us... 
If you're not a spastic person it would be interesting to see if it does you some good.
@gbells Oh, common sense! I might not be so good at that, but I'll give it a try.
If you're not a spastic person it would be interesting to see if it does you some good.
@gbells Oh, common sense! I might not be so good at that, but I'll give it a try.
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
Turmeric by itself is useless because of the poor absorption. You have to use the better forms. C3 curcumin is the most cost effective.
YippeeKi YOW !!
Senior Member
- Messages
- 16,047
- Location
- Second star to the right ...
Because curcumin is the constituent of turmeric that has the heaviest-rotation testing and research, it’s the one we’ve all been sold on, and probably the most effective extract from turmeric. Who knows.
But I’ve always believed that Mother Nature, as wretchedly bitchy as She can sometimes be, is wise beyond time and words regarding what she lumps together in one package, and since there’s less research on the other compounds and constituents of turmeric, I prefer to take a compound that includes both the isolate, curcumin, as well as the whole herb, turmeric, just in case some of those other compounds have their own medicinal properties that work either independently of curcuminoids, or work synergistically with them.
You know, just to cover all the bases.
Here’s a listing of all the major constituents of the herb/spice turmeric: Curcumin, Piperine, Curcuminoid, Bisdemethoxycurcumin, Desmethoxycurcumin, Zingiberene, Bisabolene, Germacrone, Phellandrene, Elemene, Curdione, Bisacurone.
At least one of them is critical to the absorption and bioavailability of curcumin, in this case, piperine. All curcumin products will note with pride that they contain BioPerine, which is possibly in the compound to replace the missing Piperine, found naturally in turmeric.
But I’ve always believed that Mother Nature, as wretchedly bitchy as She can sometimes be, is wise beyond time and words regarding what she lumps together in one package, and since there’s less research on the other compounds and constituents of turmeric, I prefer to take a compound that includes both the isolate, curcumin, as well as the whole herb, turmeric, just in case some of those other compounds have their own medicinal properties that work either independently of curcuminoids, or work synergistically with them.
You know, just to cover all the bases.
Here’s a listing of all the major constituents of the herb/spice turmeric: Curcumin, Piperine, Curcuminoid, Bisdemethoxycurcumin, Desmethoxycurcumin, Zingiberene, Bisabolene, Germacrone, Phellandrene, Elemene, Curdione, Bisacurone.
At least one of them is critical to the absorption and bioavailability of curcumin, in this case, piperine. All curcumin products will note with pride that they contain BioPerine, which is possibly in the compound to replace the missing Piperine, found naturally in turmeric.
2Cor.12:19
Senior Member
- Messages
- 280
@Sarah94 My rheumatologist recommended tumeric/curcumin 3 years ago and I've taken 1000 mg every day since. I've tried different brands. I believe the combo of this with low dose naltrexone (1mg) and Alieve has kept me from needing heavy duty pain meds. The LDN probably does the most for pain and mental clarity, but the tumeric/curcumin definitely makes a difference with inflammation.
As for mental clarity the thing that's made the biggest difference (HUGE) has been CPAP therapy for sleep apnea. I felt like I had come out of a coma.
As for mental clarity the thing that's made the biggest difference (HUGE) has been CPAP therapy for sleep apnea. I felt like I had come out of a coma.
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
You didn't include a poll option for 'Hell no!'.
What symptoms do you get when you take it?
gbells
Improved ME from 2 to 6
- Messages
- 1,494
- Location
- Alexandria, VA USA
Please list the symptoms.
nandixon
Senior Member
- Messages
- 1,092
Curcumin can be a great antiinflammatory but will be a disaster for some people with ME/CFS because of its negative effect on ATP production.
It's what's known as an "uncoupler" because it inhibits the mitochondrial enzyme ATP synthase (Complex V) and prevents that enzyme from making use of the driving force provided by the electron transport chain.(Complexes I, III & IV).[1]
I tried it a number of times over several years always with the result: I would feel better the first day from the antiinflammatory effect but then the next day would begin suffering from increased fatigue/ exhaustion which would not resolve.
This effect of curcumin is for me very consistent with the latest study by Paul Fisher showing that Complex V is impaired in lymphoblasts from ME/CFS patients. (See this thread: https://forums.phoenixrising.me/thr...lized-lymphocytes-from-me-cfs-patients.77577/)
[1] Uncoupling of oxidative phosphorylation by curcumin: implication of its cellular mechanism of action.
https://www.ncbi.nlm.nih.gov/pubmed/19715674/
It's what's known as an "uncoupler" because it inhibits the mitochondrial enzyme ATP synthase (Complex V) and prevents that enzyme from making use of the driving force provided by the electron transport chain.(Complexes I, III & IV).[1]
I tried it a number of times over several years always with the result: I would feel better the first day from the antiinflammatory effect but then the next day would begin suffering from increased fatigue/ exhaustion which would not resolve.
This effect of curcumin is for me very consistent with the latest study by Paul Fisher showing that Complex V is impaired in lymphoblasts from ME/CFS patients. (See this thread: https://forums.phoenixrising.me/thr...lized-lymphocytes-from-me-cfs-patients.77577/)
[1] Uncoupling of oxidative phosphorylation by curcumin: implication of its cellular mechanism of action.
https://www.ncbi.nlm.nih.gov/pubmed/19715674/