Turmeric/Curcumin for ME/CFS?

[Learner1]

@Gingergrrl Curcumin acts as a COX-2 inhibitor to help with inflammation and pain, kind of like a super-duper NSAID. I got some ibuprofen cream in Spain that was effective for swellinh of a sprained ankle. Curcumin has been mostly evaluated for joint pain and osteoarthritis but can be helpful for tendon pain, too.

I have permanent neck damage from 2 car accidents, and have had upper and lower back pain lingering after them.

The most effective treatments I had were prolozone and prolotherapy injections. Prolozone is nutrirnts and ozone to promote healing and protherapy can be done with dextrose or testosterone.

I did one or the other, not both. The injections, followed by PT with weight lifting totally fixed my pain and I have full range of motion even though I have permanent damage. Far better than painkillers and NSAIDs. Unfortunately, insurance doesn't cover these effective injections - opioids are cheaper. But they were worth the $300 I paid to fix the problem.

It looks like Smarter Nutrition only makes gel caps. I have found the brands I mentioned above to be the most potent after trying several.

Or would massage help?

 

[Wally]

Very interesting thread that I am just finding my way to over 2 1/2 years after it was first posted. I can be rather erratic when reading and/or posting here on the Forum depending on whether my illness is in a period or relapse or remission. Trying to do some catch-up reading, but very difficult to figure out what threads/posts might hold some pearls of interest/wisdom. Stumbled upon this thread because of a recent posting - thank you @Gingergrrl

I have not tried Curcumin/Tumeric as a treatment, but I have become more curious about its potential benefits so I have been hunting down research about this herb. I thought this study that I just posted yesterday related to cancer and curcumin might also be of interest to those with an interest in this herb.

https://forums.phoenixrising.me/thr...turmeric-stops-bone-cancer-cell-growth.76715/

However, when taken orally as medicine, the compound can't be absorbed well in the body. It is metabolized and eliminated too quickly.

In their study, the researchers used 3D printing to build support scaffolds out of calcium phosphate. While most implants are currently made of metal, such ceramic scaffolds, which are more like real bone, could someday be used as a graft material after bone cancer surgery. The researchers incorporated curcumin, encapsulated in a vesicle of fat molecules into the scaffolds, allowing for the gradual release of the chemical.

I am guessing that @Gingergrrl and @perchance dreamer had some success in using products derived from curcumin because they were given it through an IV or through a liposomal delivery system such as used in the Meriva and Longvida products. (Note - I have found Liposomal Vitamin C by LivOn Labs - https://www.livonlabs.com/) to produce similar results to IV Vit C when dosing at equivalent levels. LivOn Labs does not currently market a liposomal curcumin product.)

Here is a 2017 study about using a liposomal delivery system for curcumerin for treating cancer. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573051/

Curcumin (CUR) is a yellow polyphenolic compound derived from the plant turmeric. It is widely used to treat many types of diseases, including cancers such as those of lung, cervices, prostate, breast, bone and liver. However, its effectiveness has been limited due to poor aqueous solubility, low bioavailability and rapid metabolism and systemic elimination.

To solve these problems, researchers have tried to explore novel drug delivery systems such as liposomes, solid dispersion, microemulsion, micelles, nanogels and dendrimers. Among these, liposomes have been the most extensively studied. Liposomal CUR formulation has greater growth inhibitory and pro-apoptotic effects on cancer cells. This review mainly focuses on the preparation of liposomes containing CUR and its use in cancer therapy. . . .

CUR has exerted therapeutic effects in many types of cancer including lung, cervical, prostate, breast, OS and liver cancers. However, in vivo activities of CUR are limited due to its poor solubility and low bioavailability. Liposomes provide a type of effective drug delivery system for CUR. As we discussed in this review, liposomes could enhance antitumor and pharmacological activities of CUR by improving pharmacokinetics and pharmacodynamics and reduce the dosage required for targeting tumor. Especially, CUR was incorporated in liposomes with different supports such as CS, vitamin A, folic acid, hyaluronic acid, β-CD, CMD, silica and PEG conjugates. In addition, drug combination encapsulated in liposomal nanoparticles could also sensitize cancer cells, such as CUR and C6 ceramide in OS cell line. Therefore, the combination of CUR and liposomes may be an ideal strategy in clinical practice to treat cancers. With the constant development of liposomes, CUR liposomes will be more optimized. Meanwhile, clinical application of CUR will be extended.

 

[perchance dreamer]

I am guessing that @Gingergrrl and @perchance dreamer had some success in using products derived from curcumin because they were given it through an IV or through a liposomal delivery system such as used in the Meriva and Longvida products.

Yes, I do take the Meriva and Longvida forms.

 

[nyanko_the_sane]

A great explanation of Longvida Curcumin.

 

[tiredowl]

https://www.amazon.com/Neurobiologix-Curcumin-Topical-Cream-pump/dp/B00TVCR9K2/ref=sr_1_1_sspa?crid=TL9CPXF668US&keywords=neurobiologix+curcumin&qid=1561486548&s=gateway&sprefix=neurobiologix,aps,283&sr=8-1-spons&psc=1

Here is a topical curcumin. I wonder how this will work... I seem to have become sensitive to curcumin tablets sadly, maybe it's because of the salicylates turmeric contains... but I now got a rash taking it, which didn't happen when I took it last year. This really sucks, because it's a great anti-inflammatory...

 

[BadBadBear]

My experience was that it worked awesomely for my muscle pain but threw me into deep depression. Its an MAO inhibitor so it can have some unexpected side effects, especially if you already have MAO issues.

 

[Wally]

@BadBadBear - Thank you for posting about your experience with curcumin. It always seems like food, herbs, minerals, vitamins and synthetic drugs have side effects for someone or a larger group of someone’s. So important to be aware that it is almost like a game of yin and yang or perhaps more like russian roulette to try to figure out what item (taken topically, orally or intravenously) each of our bodies will handle at any given time.

Once personalized medicine diagnosis takes off, we (the patient) might begin to see real progress in addressing health issues. Unfortunately, personalized medicine may not help pharmaceutical companies bottom line. I think it would be much more profitable for them to throw handfuls of drugs (the newer, the better) out of the back of a truck into the hands of people who are desperate to feel better rather than narrowing the field down to people who may actually benefit and tolerate the drugs that they are being offered to try.

Sometimes I feel like doctors give out drug samples and prescriptions, the way candy use to be given out to children to keep them quiet and happy.

 

[nyanko_the_sane]

@BadBadBearSometimes I feel like doctors give out drug samples and prescriptions, the way candy use to be given out to children to keep them quiet and happy.

You are so not kidding...

 

[Learner1]

Agree about the personalized medicine. I've become suspicious of any new drug or supplement unless I understand how it'll work for me.

Yes, I do take the Meriva and Longvida forms.

While I have seen the excellent literature on both products, and have taken them, they were not as potent as the Designs for Health and nurish.me products when I needed high potency. 3 drops of the nurish.me version did more for me than 8g of Meriva.

 

[Gingergrrl]

Thank you so much to everyone for all of the feedback and I'm going to research these different Curcumin options and hoping that it might help with my severe, chronic neck & arm pain. I am able to do more physically now (in general) but when I attempt new things, I end up with excruciating neck pain that takes days to recover from. The pain is finally improving from lifting my dog into the car on Fri for a vet appt but it has taken almost a week! So I want to try new options to see if it can help my neck pain.

@Gingergrrl Curcumin acts as a COX-2 inhibitor to help with inflammation and pain, kind of like a super-duper NSAID

If someone is allergic to NSAIDS, is there a greater chance that they might be allergic to Curcumin (or are they totally unrelated)?

It looks like Smarter Nutrition only makes gel caps. I have found the brands I mentioned above to be the most potent after trying several.

Thanks for clarifying re: "Smarter Nutrition" that they only make gel caps. I definitely want to start with a skin cream to test the lowest dose possible before trying an oral version. I will go back in the thread to find the two brands that you like the best.

Or would massage help?

I'm not really sure at this point and I'd have to start at ground zero to find a good massage therapist. When I was doing PT at the end of 2018, they had a massage therapist but she only did "deep tissue" massage which was too painful for me. My PT wanted her to do a different type of massage for me but she said no so I only saw her twice (the massage therapist, not the PT).

I also have a small cyst on the side of my neck (totally unrelated to the pain) but am hesitant for a massage therapist to push on it b/c my dermatologist said to leave it alone until I see her again in Sept to re-evaluate it.

Stumbled upon this thread because of a recent posting - thank you @Gingergrrl

Glad that I could help @Wally but I also stumbled upon it myself

I thought this study that I just posted yesterday related to cancer and curcumin might also be of interest to those with an interest in this herb.

I have heard about Curcumin being helpful for cancer. And on a completely different note, it was recommended by the PT vets for my dog after her back surgery to reduce the pain and inflammation. She ended up not taking it though b/c there were too many other things that they needed her to try that were more important at the time.

I am guessing that @Gingergrrl and @perchance dreamer had some success in using products derived from curcumin because they were given it through an IV or through a liposomal delivery system such as used in the Meriva and Longvida products.

I actually have never tried Curcumin and I think you are confusing me with someone else. But if I do end up trying it, I will report back here if it helps my neck pain and inflammation.

Yes, I do take the Meriva and Longvida forms.

Thank you and I have added these two brands to my list to Google.

Here is a topical curcumin. I wonder how this will work... I seem to have become sensitive to curcumin tablets sadly, maybe it's because of the salicylates turmeric contains... but I now got a rash taking it, which didn't happen when I took it last year. This really sucks, because it's a great anti-inflammatory...

Thank you so much for the link to the topical Curcumin and I might start with this one. In general, I don't have problems with salicylates but I am allergic to aspirin.

Sometimes I feel like doctors give out drug samples and prescriptions, the way candy use to be given out to children to keep them quiet and happy.

I agree and this is what happened to me in 2010 with Levaquin when I was given free samples by a former ENT for a throat infection and it almost ruptured my triceps tendon and I ended up in the hospital with a neurotoxic reaction. Levaquin in literally given out like candy by doctors but I don't really see that changing.

Agree about the personalized medicine. I've become suspicious of any new drug or supplement unless I understand how it'll work for me.

I totally agree.

While I have seen the excellent literature on both products, and have taken them, they were not as potent as the Designs for Health and nurish.me products when I needed high potency. 3 drops of the nurish.me version did more for me than 8g of Meriva.

Are "Designs for Health" and "nurish.me" the two brands that you were referring to above @Learner1 as being the most helpful for you? I'm not sure though (for me) since you said that they are "high potency" if they would be the right thing for me to start with b/c I want to first test a very low dose.

 

[Learner1]

If someone is allergic to NSAIDS, is there a greater chance that they might be allergic to Curcumin (or are they totally unrelated)?

Everything is a different chemical composition, so you'd probably have a different experience with each one. And, with MCAS we can react to anything, so who knows? I have never had a problem with it.

Are "Designs for Health" and "nurish.me" the two brands that you were referring to above @Learner1 as being the most helpful for you? I'm not sure though (for me) since you said that they are "high potency" if they would be the right thing for me to start with b/c I want to first test a very low dose.

Given the situation you are describing, I am highly doubtful you'd get any relief with a tiny dose. One of the negatives about curcumin is that it isn't very bioavailable, so everyone is trying to increase the potency to get the benefits.

It sounds wise for you to get to the root of what's causing these symptoms and tackle that. As I mentioned, you might find prolozone or prolotherapy to be helpful tools. Cranial sacral therapy, Feldenkreis, PT, and chiropractic or osteopathic adjustments have their place as well.

...and then there's Ben Gay...

 

[Hopeful1976]

Just to say, I took turmeric with piperine for 1 month and although initially I felt good, the last week or so I started to go downhill and feel really poorly. 24 hours after stopping it, I started to feel better. Be careful and listen to your body's reactions - not everyone will have positive responses to seemingly superstar, beneficial herbs and spices.

 

[Gingergrrl]

Everything is a different chemical composition, so you'd probably have a different experience with each one. And, with MCAS we can react to anything, so who knows? I have never had a problem with it.

I agree we are all so different and I would test a tiny amount first (to make sure I am not allergic) and then increase toward a higher dose (if I decide to try it).

Given the situation you are describing, I am highly doubtful you'd get any relief with a tiny dose. One of the negatives about curcumin is that it isn't very bioavailable, so everyone is trying to increase the potency to get the benefits.

Thank you for explaining and I did not realize (or I forgot ) that it is not bio-available so a bigger dose would be needed (or something to increase the potency). I just combined all my millions of post-its into one list of all the things that I want to Google and learn more about including these different brands of Curcumin (oral and transdermal).

Just to say, I took turmeric with piperine for 1 month and although initially I felt good, the last week or so I started to go downhill and feel really poorly. 24 hours after stopping it, I started to feel better. Be careful and listen to your body's reactions - not everyone will have positive responses to seemingly superstar, beneficial herbs and spices.

What is "piperine"? Is this always part of Curcumin preparations? I'll Google it, too. And I agree with you that what helps one person can be poison for another and we have to listen to our own body.

Edit: Piperine seems to be black pepper and added to some Curcumin but not all... hoping this is correct?

 

[pamojja]

Edit: Piperine seems to be black pepper and added to some Curcumin but not all... hoping this is correct?

Piperine is one of the many phyto-chemicals in black and long peper, an alkaloid, at about 1-10% in the dried pepper powders. It greatly enhances the absorption of curcumin, itself again a phyto-chemical of the tumeric root at about 3% in the dried turmeric powder. Most affordable curcumin supplements are standardized to 95% of curcumin and a few milligrams of piperine.

 

[Hopeful1976]

I agree we are all so different and I would test a tiny amount first (to make sure I am not allergic) and then increase toward a higher dose (if I decide to try it).



Thank you for explaining and I did not realize (or I forgot ) that it is not bio-available so a bigger dose would be needed (or something to increase the potency). I just combined all my millions of post-its into one list of all the things that I want to Google and learn more about including these different brands of Curcumin (oral and transdermal).



What is "piperine"? Is this always part of Curcumin preparations? I'll Google it, too. And I agree with you that what helps one person can be poison for another and we have to listen to our own body.

Edit: Piperine seems to be black pepper and added to some Curcumin but not all... hoping this is correct?

Yes piperine is from black pepper - it increases the strength and bioavailability of the turmeric massively!

 

[Carl]

Yes piperine is from black pepper - it increases the strength and bioavailability of the turmeric massively!

Yes, plus everything else in the digestive system which CFS sufferers really do not need. It also inhibits the liver detox processes which is another negative against it IMO.

I also saw a warning about it promoting the entry of bacteria into the bloodstream from the digestive system which in CFS is already a threat because of the cause of CFS is a bacterial infection of the digestive system.

The only time that I would use piperine/black pepper would be as an Efflux Pump Inhibitor to stop bacterial ABC Efflux Pumps. For every other use I would avoid it!

 

[Hopeful1976]

Yes, plus everything else in the digestive system which CFS sufferers really do not need. It also inhibits the liver detox processes which is another negative against it IMO.

I also saw a warning about it promoting the entry of bacteria into the bloodstream from the digestive system which in CFS is already a threat because of the cause of CFS is a bacterial infection of the digestive system.

The only time that I would use piperine/black pepper would be as an Efflux Pump Inhibitor to stop bacterial ABC Efflux Pumps. For every other use I would avoid it!

This resonates a lot with my experiences!

 

[Gingergrrl]

https://www.amazon.com/Neurobiologix-Curcumin-Topical-Cream-pump/dp/B00TVCR9K2/ref=sr_1_1_sspa?crid=TL9CPXF668US&keywords=neurobiologix+curcumin&qid=1561486548&s=gateway&sprefix=neurobiologix,aps,283&sr=8-1-spons&psc=1

Here is a topical curcumin. I wonder how this will work...

@tiredowl I wanted to let you know that I ordered this topical Curcumin on Amazon yesterday and will update this thread once it arrives and I have a chance to try it (for neck pain). The reviews on it were good but one person who tried it for neck pain wrote that they could taste the Curcumin in their mouth (from putting it on their neck ) which means that it must be pretty strong!

 

[Carl]

This resonates a lot with my experiences!

An alternative option is to make some liposomal curcumin which should help get it into the bloodstream and into cells. It would still be broken down by the liver but at least absorption would be better without the negative effects of black pepper.
Here is a Yahoo group which has information on Liposomes which might be helpful in making them.

 

[GloriaDG]

Hello! I've also just started taking turmeric supplements (with piperine). I mainly want to see if it has any effect on my swollen tiny cervical lymph nodes, as I think they're swollen for inflammation. I'm very interested in this topical cream now. I wonder what would happen if I applied it on my lymph nodes directly. They are slightly painful and cause me a lot of pressure/tension below my ears and under the sides of my jaw, so a curcumin cream applied in those areas might be helpful. I wonder if this might work.