Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Turmeric/Curcumin for ME/CFS?

Discussion in 'Alternative Therapies' started by charles shepherd, Jan 29, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Turmeric/Curcumin for ME/CFS?

    One of our members on MEA Facebook has asked about the use of turmeric/curcumin for ME/CFS

    More info below

    If anyone on PR is using turmeric/curcumin, or has been using it, feedback would be welcome

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    Jan 29th 2017

    MEA Facebook:
    https://www.facebook.com/ME-Association-171411469583186/

    Info on Turmeric/Curcumin:

    Turmeric is a spice that is often used in Asian cooking. The root of the plant it comes from contains a chemical called curcumin, which can be used to make a medicine.

    This is then sold in capsule form and is widely available from health shops and some pharmacies

    We receive occasional feedback from people with ME/CFS on the therapeutic use of turmeric/curcumin

    As with almost all anecdotal reports there is a mixed response - some people have reported that turmeric/curcumin can help with some of their ME/CFS symptoms whereas others find no benefit. A few people report side-effects

    As there have not been any clinical trials to assess the safety and efficacy of turmeric/curcumin in ME/CFS we really don't know if it could be of genuine benefit here

    There is, however, some interesting research that has examined the therapeutic properties of curcumin and it appears to have genuine anti-inflammatory effects

    So turmeric/curcumin may be of benefit in anti-inflammatory conditions like arthritis, inflammatory bowel disease and possibly even ME/CFS - possibly by its effect on pro-inflammatory cytokines (immune system chemicals that cause and maintain inflammation)

    Comprehensive research evidence review:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535097/

    Turmeric/curcumin is also capable of enhancing serotonin levels in the brain ( a 'feel good' chemical transmitter) and affecting the hypothalamic-pituitary-adrenal (HPA) axis (which is involved in ME/CFS) where it increases the level of the hormone cortisol

    Research paper abstract relating to action on the HPA and raising levels of the hormone cortisol:
    http://www.bmijournal.org/index.php/bmi/article/view/79

    As with any substance that has therapeutic actions, turmeric/curcumin can have side effects, and there are situations where it is best avoided. These need to be considered before using it

    Reliable information on side-effects and cautions:
    http://www.webmd.com/vitamins-supplements/ingredientmono-662-turmeric.aspx?activeingredientid=662

    It would be interesting to hear from anyone with ME/CFS who is using, or has used, turmeric/curcumin...
     
  2. Cheesus

    Cheesus Senior Member

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    I have used curcumin it in the past. I didn't really find it made any difference one way or another.

    It can quite heavily influence the p450 enzyme, so anyone taking curcumin should be aware that it may interact with medications that are detoxed via the liver. If I recall correctly, it can both speed up and slow down various liver pathways, so can have both an amplifying and diminishing effect on medication.

    My parents both use it for arthritis, and they are very happy with the results.
     
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  3. Cheesus

    Cheesus Senior Member

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    Come to think of it, I recall someone on another forum who took part in a trial for curcumin in ME. She said she found it helped her symptoms quite a lot, including fatigue. She posted a translation of the trial from Dutch before it went to print (it might never have made it print in the end) and the researcher noticed that there had been a number of side effects which was unusual because side effects were so uncommon in the literature.

    Unfortunately it is a private forum and I would not feel comfortable reposting the trial here.

    I had a number of side effects the first time I took it, which was when I had idiopathic and quite dramatically elevated liver enzymes. I returned to it later when my liver enzymes were normal and experienced no side effects. I believe the side effects were a result of toxins coming into circulation (I was headachy and nauseous) but I know many in the medical profession would scoff at my conclusion. Curcumin is a very effective in stimulating both gall bladder emptying and phase 2 detoxification, and given my idiopathic elevated liver enzymes I surmised I may have had poor liver elimination.
     
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  4. Prefect

    Prefect Senior Member

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    I've been taking curcumin the last two weeks for my 20 yr long mystery illness which has many similar attributes to CFS/ME such as the head fatigue, dizziness, mental fog, and psychiatric symptoms, but I can exercise. Mine started with a mystery illness that shot my liver enzymes through the roof but they went back down after a few months and been normal since.

    I feel the pathological mechanism behind many similar affective illnesses (including mental illness) is due to inflammation, hence my late curcumin trial.

    The first week I took Now's Curcumin Complex. I took it at half the dosage because I'm on an SSRI and curcumin is a mild MAO Inhibitor, so had to watch out for a theoretical though unlikely potential for serotonin syndrome.

    As I read more I realized the only bioavailable form of curcumin is brands that contain curcumin manufactured by Longvida, so the last two days I've been using a product called CurcuMIND which is one of the few Longvida containing brands up here in Canada.

    So far all I've gotten from both products is a strange heaviness in my forehead and feeling of spaced-out-ness that starts within 30 minutes and ends around 2.5 hours after I take the pills. This is obviously too fast to have anything to do with curcumin's systemic impact, so I can't quite explain it and hope it goes away because I really want to apply this idea around the anti inflammatory concept.
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    My doctor prescribed curcumin for the inflammation found in ME/CFS. I have been taking it for years. I didn't notice a sudden change but do think it has some effect on inflammation.
     
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  6. barbc56

    barbc56 Senior Member

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    If curcumin acts as an MAOI, I wonder if you have to be careful about what you eat so you don't get what is called the cheese effect, where you get a spike in blood pressure after eating certain foods? I'm not sure about the equivalent dose compared to the prescription drug nor to what extent curcumin has these properties.

    You are right to be concerned about the dangers of combining an SSRI and an MAO. Again, I don't know what dosage is dangerous or if they're ever used in combination.

    I do know that for some patients on MAOIs, it's recommended to monitor your blood pressure

    i am not in the health field so take that into account and consult your doctor or another health professional with any questions.

    Take care.
     
    Last edited: Jan 29, 2017
  7. Learner1

    Learner1 Professional Patient

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    I was originally prescribed 3g of Meriva curcumin a day during my cancer treatment. At that time, I just followed directions...

    Since then, I've had a couple of crises related to detoxing. In each case, my body got stuck after phase 1 detox, using CYP450 enzymes, which can make toxins into MORE toxic intermediate metabolites, which need phase 2 detox to convert them further and get them out of the body.

    Symptoms were headache, nausea, rest, intestinal distress, and sulfurous gas

    I ended up having IVs of curcumin, which acts as a broad spectrum phase 2 detoxifying agent, which got me through the crisis, with my body being able to get rid of the arsenic and lead my body had mobilized. It worked great, though the IVs were expensive.

    It's anti-inflammatory, too.
     
  8. charles shepherd

    charles shepherd Senior Member

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    One important drug interaction with turmeric/curcurmin, which again emphasises the point that this is a pharmacologically active plant, involves drugs that are used in relation to blood clotting

    Medications that slow blood clotting (Anticoagulant / Antiplatelet drugs) interact with turmeric. Turmeric might slow blood clotting. So taking turmeric along with medications that also slow clotting might increase the chances of bruising and bleeding.

    Some of the drugs that slow blood clotting include aspirin, clopidogrel (Plavix), diclofenac (Voltaren, Cataflam, others), ibuprofen (Advil, Motrin, others), naproxen (Anaprox, Naprosyn, others), dalteparin (Fragmin), enoxaparin (Lovenox), heparin, warfarin (Coumadin).
     
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  9. adreno

    adreno PR activist

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    I wouldn't use it, knowing what we know now. It inhibits mTOR, which is likely the opposite of what we need.
     
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  10. Learner1

    Learner1 Professional Patient

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    The GreenMed Info website has a wealth of information on turmeric/curcumin. They've gathered dozens, if not hundreds, of research studies.

    I have seen it reverse advanced cancers that have failed chemotherapy drugs in large doses given by IV at a clinic I went to for integrative cancer treatment. One patient was an MD who'd researched it and traveled across the country to get it when nothing else helped her metastasized breast cancer.

    It takes work to make it bioavailable. Piperine from black pepper and lipids (butter, oil, phosphatidyl choline, etc.) help. Many products aren't very bioavailable, so that could be why it doesn't work for some people.

    When it does, it can cause side effects as it's acting on liver detoxing. Depending on what your body is trying to get rid of, and how well your Phase 1, 2, and 3 detox systems are working, you may have different symptoms.

    I had arsenic stored up at one point, with all kinds of arsenic toxicity symptoms and was absolutely miserable, and the curcumin helped flush it out of my body.

    You may need molybdenum, B1, taurine, and/or activated charcoal, too.

    mTOR is just one pathway. There's a lot more to this equation.
     
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  11. shannah

    shannah Senior Member

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    I use the 95% Curcumin at 4 grams a day to keep inflammation down. It's still not under control but it helps significantly. I'd like to increase it at some point; however, I've held off as it makes the OI issues worse.

    I'm a long termer and some of us go from low blood pressure to high in later years. Curcumin lowers both my BP and HR.
     
  12. Prefect

    Prefect Senior Member

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    Is it a highly bioavailable brand like Longvida? Do you follow any dietary restrictions due to this?

    I've been researching this and all I get is it's not that big a concern because Curcumin is a reversible MAOi, but I can imagine you'd have to be careful with St John's Wort. I emailed Nutrivene, who sells Longvida Curcumin and this was their reply "Thank you for your email. The following are cautions when using Nutrivene Longvida Curcumin: Use during chemotherapy should only be performed under the direct supervision of a qualified medical professional. Curcumin may enhance the actions of anti-platelet drugs, warfarin, and anti-inflammatory agents.
    You would not need to restrict your diet unless your healthcare professional suggests you do so.
    "

    Is it a highly bioavailable brand like Longvida? Do you follow any dietary restrictions due to this?
     
  13. Prefect

    Prefect Senior Member

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    Update: Okay so I still get major lightheadedness and brainfog for about 3 hours every time I take curcumin, I just don't understand. This has happened for over a week, and the more bioavailable the form the worse it is.

    I'll take a break for a day or so to establish a baseline and try again.

    It's not blood pressure (high or low) I've checked, and it's not blood sugar because eating loads of honey or raisins doesn't fix it.

    Maybe curcumin acutely lowers cortisol? I keep reading the research and get conflicting info on this, here's one

    http://pubs.acs.org/doi/abs/10.1021/np900227x
     
  14. Learner1

    Learner1 Professional Patient

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    It's obviously doing something... it's figuring out what it's doing or not doing that's the key.

    I've been taking it for almost 2.5 years and know a lot of people who do, in different doses, for different problems.

    What problem are you trying to solve?
    How's your Phase 1 detox?
    How are your Phase 2 pathways?
    Any known methylation problems?
    Your transsulfuration pathway?
    What medications are you on?
    What supplements are you taking?
    Any significant toxic exposure? Toxic load?
    How well is your gall bladder making bile?
    Is your liver happy?

    I have crashed adrenals, a sluggish thyroid and am otherwise hormonally challenged and I've been on an ACE inhibitor and ARB blood pressure med in the past 9 months. I can't say that being on curcumin has made much of a difference in dealing with these issues..

    I have had times with symptoms you describe, but they're due to other factors on the list above.

    If I had to guess, I'd suspect the curcumin is moving some toxin you have through some pathway where you either have too much toxin or not enough cofactors and then getting stuck for 3 hours. Your body then catches up with processing or storing the toxin and the symptoms go away.

    This is the kind of situation I'd discuss with my doctor - do you have one to discuss your situation with? I suspect curcumin may be able to do some really good things for you, it's a matter of figuring out what's standing in the way of success.
     
    Last edited: Jan 30, 2017
  15. Prefect

    Prefect Senior Member

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    You've been making suggestions on my introduction post, which would give some background on me.

    http://forums.phoenixrising.me/index.php?threads/my-story-i-can-exercise-so-what-is-it.48539/

    I'm trying to see if reducing inflammation can improve my symptoms, and my research led me to Curcumin.

    The symptom it gives me is similar to the 2-3 pm crash I get so I thought it might be crashing my cortisol.

    I'm a "CFS" old-timer who's only recently revisiting this stuff because my current life situation is exasperating my symptoms, so I've decided to take another crack at trying to figure it out. It appears over the past 20 yrs the topic has evolved quite a bit so I don't even know what most of your questions mean, lol. I was a Jay Goldstein reader, and still think he was onto something. Too bad living in Canada I could never acquire his services.

    I only have an ordinary doctor. I'm considering in getting an "Alternative Medicine" one to see what happens.
     
  16. Prefect

    Prefect Senior Member

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    Hold on, what do you mean by this? Isn't bile what makes stool yellow? I think I can answer this one at least.

    It's been nothing but light yellow for 20 years. It changed the week I got sick. I've read that's from bile salt deficiency? If I ask my ordinary doc to test me for that she'll just stare at me and ask if I've decided to switch SSRIs like she asked the last time.

    And no, I don't have dark urine or jaundice, and my bilirubin has always been at normal levels.
     
  17. kangaSue

    kangaSue Senior Member

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    Do you get diarrhea with it too as in bile salt (acid) malabsorption? Pancreatic deficiency is sometimes part of the problem and pancreatic enzymes can help with that in some cases otherwise a bile binding sequestrant can improve things.
    http://bilesalts.net/dealing-with-bile-salt-malabsorption/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002596/
     
  18. Learner1

    Learner1 Professional Patient

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    @Prefect, I didn't mean to be impertinent with my questions, just to point out there are a lot of variables in play.

    We are complex systems of systems made up with many individual pathways. Our genes affect how these pathways work.

    Environmental factors, the food we eat, air we breathe, substances on our skin all bring foreign things into our bodies that must be properly assimilated, metabolized, and put to bed, either stored within us or gotten rid of, through these pathways.

    These inputs and outputs aren't always optimally balanced and our pathways may work in fits and starts, rather than as a smooth, well-oiled machine.

    The past few months has been exciting for CFS, with major papers about the metabalomics of CFS published. This Q&A on one of the key papers gives you an idea:

    http://www.openmedicinefoundation.o...-fatigue-syndrome-q-a-with-robert-naviaux-md/

    In the second paragraph of Q5 a process called methylation which uses folate and B12, is discussed. Methylation does many things, including being essential to taking toxins out of the body.

    Many of us have genes limiting the throughput of these pathways, and increasing the need for folate, B12, B1, B2, B3, B6, magnesium, potassium, molybdenum, methionine, glycine, glutamine, cysteine, taurine and other nutrients needed to complete the job.

    We have other detox pathways, too, each with their necessary ingredients to get the job done. Unfortunately, we don't always have the right amounts in the right ratios.

    Whatever gets processed heads off to become sweat, feces, and urine, assisted by our gall bladders and livers. A lot can go wrong and instead of going out, toxins can be reabsorbed, then stashed in our livers, our fat, our bones, our mitochondria, etc. and make us sick.

    As I mentioned, curcumin is a broad spectrum detoxer. If you don't have support for other elements of detoxing, you could potentially be mobilizing toxins and have symptoms when they get stuck without the ability to be released fast enough.

    I've just given you a high level overview here, glossing over many intricate details.

    Finding a functional medicine doctor to help you would be a good idea given your background. A good naturopathic doctor who digs into the science can be an ally.

    And getting up to speed on some of this would be helpful to better understand treatment regimens.

    You could learn more about your genes by doing a 23andme test, which you can order on the web.

    Some people to follow to learn more about lol of this, they all have a lot of info available:

    Ben Lynch
    Amy Yasko
    Christopher Shade
    Heartfixer (Dr Roberts)
    and
    Rich Van Konynenburg's (PR member richvank) presentation made to a group of doctors in Sweden:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    Lots to learn... and many discussions on this site on these topics.

    Best wishes to you
     
  19. Valentijn

    Valentijn WE ARE KINA

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    I cook with it several times per week, because Indian food is awesome :love: But it doesn't have any impact on my health.
     
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  20. perchance dreamer

    perchance dreamer Senior Member

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    I take the Meriva form to help with joint pain, and I take the Longvida form to help my short-term memory. Both these forms help me a lot.
     

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