1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Who's up for an experiment? NO balance and fatigue in CFS

Discussion in 'General Treatment' started by Fejal, Sep 11, 2010.

  1. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    This is an experiment I would like to conduct here in the forum to test the hypothesis that using Turmeric, an anti-inflammatory supplement that restores the PI3 but inhibits the NF-KB inflammatory cascade pathway will have a noticeable effect in increasing inflammation and fatigue which is alleviated by administration of the protective supplement Milk Thistle. These pathways are known to be blocked in neutrophils (white blood cells involved in immunity) when L form bacteria infect them. (Faherty 2008) The exercise uses a crossover approach and is unblinded.

    If the hypothesis is null that L form cause CFS then then turmeric alone will likely improve patients with CFS because is anti-inflammatory.

    If hypothesis is not null turmeric will worsen symptoms.

    Materials you will need:

    • A patient diagnosed with chronic fatigue syndrome
    • 1 small bottle of Milk Thistle supplement standardized for silymarin
    • 1 small bottle of bioavailable turmeric supplement standardized for curcumin (needs to be either a phospholipidized form or with 5 mg of additional supplement bioperin for good absorption. If you buy an additional bottle of bioperin you can split the capsules with a pill splitter and seal them with food grade wax but for ease of use I recommend getting phospholipidized turmeric if available).

    (Note-a great place to buy supplements is Swanson Vitamins online)

    Method

    1. Make sure your omega 3 level is adequate. Most people need 2-3 tablespoons of flax oil with fiber per day taken at breakfast. 10% of the population can't transform the EPA in flax. You can test for this by noting depressed mood and dry skin. If flax supplementation is working (and dose is correct) these rapidly improve in a few days. Otherwise you can use Chia seed extract which is more expensive but useable by anyone.

      ATTENTION:THIS IS A NEW PROTOCOL. MODIFIED AS OF 9/23/2010.
    2. Before taking supplements (and any anti-inflammatory medication) note your baseline of inflammation symptoms. List symptom (i.e. intermittent headache, fatigue, quality of sleep), how often it occurs and severity (0 none -10 worst). Do this for a minimum of two days to get a level baseline. Also list when and the dose of any anti-inflammatory medication you need for pain management. If symptoms are changing keep tracking them until they level for two days.
    3. First take 1 capsule of Milk Thistle every 8 hours (3x per day). Do this for two days noting your symptoms. When they are stable move to the next step.
    4. Keep taking milk thistile but now add 1 capsule of turmeric every 12 hours. As they appear note symptom changes (increase, decrease) and list new symptoms. Stop tumeric when symptoms are stable unless intolerable.
    5. If the milk thistle helps you discuss continuing it with a knowlegeable health care professional.
    6. Post your progress and results here.
     
  2. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    I'm not entirely clear on your hypothesis.

    It looks like you've got at least 3 hypotheses intermingled:
    1) that turmeric will have a noticeable effect in increasing inflammation and fatigue
    2) that milk thistle will counteract the effects of turmeric if 1) is true
    3) that L form bacteria cause CFS

    Perhaps these hypotheses should be tested separately so that you can distinguish the effects. Or perhaps I just need a clarification of the hypothesis. :Retro smile:
     
  3. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    The hypothesis is that L form bacterial infection result in increased cytokines which elevate Nitric Oxide and impair mitochondrial biogenesis and energy production.

    If hypothesis is null turmeric will improve symptoms, if not null it will worsen them.


    >1) that turmeric will have a noticeable effect in increasing inflammation and fatigue

    Proven already. (see Aggarwal 2009).

    >2) that milk thistle will counteract the effects of turmeric if 1) is true

    Proven already to protect the same NF-kB pathway that turmeric inhibits as previously stated. (see Mojgan 2006)

    >3) that L form bacteria cause CFS

    That's the hypothesis

    (Sorry for not posting references before)
     
  4. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    Hi; as I read Aggarwal, he is saying that curcumin has an anti-inflammatory effect--am I misinterpreting something? Chris
     
  5. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,509
    Likes:
    2,043
    London
    If you introduce flax oil then your experiment is ruined. Flax oil makes me much worse to start off with. Introducing several supplements at one time that may have different reactions is flawed.

    If tumeric improves CFS then it could be caused by an agent or condition that tumeric is useful against. L forms may not be anything to do with this or in some patients only.
     
  6. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    I thought that curcumin is said to have an anti-inflammatory effect, too.
     
  7. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Ukx,

    >If you introduce flax oil then your experiment is ruined. Flax oil makes me much worse to start off with. Introducing several supplements at one time that may have different reactions is flawed.

    I just want to ensure the omega 3 balance is covered. As I wrote before use Chia seed if flax doesn’t work, it just is more expensive.

    Omega 3 doesn’t “ruin” the experiment. Although it helps reduce it, significant inflammation will not be masked by it.

    Chris,

    Yes turmeric is anti-inflammatory but it also challenges the NF-kB pathway with a partial block that increases L form bacterial immune dysfunction. This could occur by allowing more bacterial activity and raising inflammatory cytokines which would increase nitric oxide and be reflected in aggravation of symptoms (fatigue, inflammation). That is how the hypothesis is being tested. If there is no NF-kB activity blocking then it should help, if the blocking is present it will worsen but be alleviated by the silymarin (milk thistle) antidote.

    Now that I have addressed your questions, may the experiment begin.

    Looking forward to your results.
     
  8. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Note: I added one more leg to the trial, milk thistle alone, and changed the milk thistle dosing so that adds two days to the experiment. Who will be doing it?
     
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,043
    Sth Australia
    My CFS/ME specialist advises his patients to take tumeric.. if it was making people worst doing that, i dont think he'd be advising it. (i've forgotten now thou why he advised me to take it). (note the specialist im refering to is one of the most well known ones in my Australian state)
     
  10. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Great so we have conflicting theories. That's why we're testing them! Frankly I'm not sure what the response will be given that the subjects aren't screened for a history of high vitamin D use, viral infection and haven't lowered vit D through sun and diet avoidance-the immunosuppression might be too strong to guage a response. For a follow up we can do a therapeutic probe of two weeks of sun and vitamin D avoidance and then repeat it.
     
  11. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    Why

    for goodness sake would you propose an experiment in which the first condition of the experiment would make someone with CFS feel worse?

    I guess it's everyones personal choice to try it but that seems insensitive to me and almost cruel.

    What if the second part of your experiment does not offset the first part? Then all you've done is maybe give the person a relapse to prove a point about a supplement.
     
  12. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    bakercape,

    Stop worrying, the effects are totally reversible.

    People should try it because if it is positive it means they can benefit and might be cured with BALI protocol.

    If symptoms are too strong feel free to move to the next step early which would relieve them. I'll add that to the instructions.
     
  13. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1


    No, regular turmeric has very low absorption so it is like not taking it at all. Use one of the bioavailable forms instead.
     
  14. SaraM

    SaraM Senior Member

    Messages:
    502
    Likes:
    18
    Fejal,
    This thread has been really helpful . Thank you. I used turmeric with and without milk thistle with no result. But milk thisle is the best thing I have ever used for pain. I think it must affect my liver function in some way because I have symptoms indicating liver problem . I guess grape seeds extract has been also helpful for OI and energy. No other herbal supplement has ever had any effect on me.
     
  15. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    SaraM,

    You're welcome. Thanks for reporting your findings. It is probable that unless the vitamin 1,25D levels are lowered you are so suppressed by L-form bacteria that the added tumeric can't increase immunopathology because the body is too inhibited to respond. If you have low body temperature and want to try the BALI protocol which is a modified form of the Marshall Protocol with additional supplements contact the Chronic Illness Recovery group and request information on it. I think this is a good idea if you have problems with low body temperature and don't get colds like you used to before you developed CFS (lower or absent fevers).

    Milk Thistle is a strong liver protectant as well as increases detoxification and unblocks the NF-kB pathway, one that L-form bacteria use to suppress the immune system. I'm glad it was able to help you. It is a key supplement in the BALI Protocol.

    Murray's Encyclopedia of Natural Medicine, 2nd ed. has a good chapter on detoxification, however note that the book is out of date and doesn't have any useful information pertaining to CFS patients. Generally recommendations are red colored powerfoods (red kale but also green kale to a lesser extent) to upregulate liver detoxification pathways, psyllium fiber to absorb toxins, C to raise glutathione and avoidance of detox inhibitors (grapefruit juice). Hamilton's The Body Restoration Plan has some good information on pesticides and detoxification as well (though I don't agree with some of her recommendations).
     
  16. Mya Symons

    Mya Symons Mya Symons

    Messages:
    842
    Likes:
    171
    Wyoming
    I am willing to try this when I get paid. Actually, I am willing to try anything that I can afford that may help. :Retro smile: My check comes October 1. But, I have the flu on top of everything else and have pretty bad brain fog. Usually after the flu I get a long flare up. I might need to ask you for more directions once I get the supplements.

    Question: L-form bacteria is usually mycoplasma or Lyme, is that correct?
     
  17. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Lots of bacteria have an L-form. We don't know which ones specifically. I don't want to go into detail specifically. The protocol is complicated and you need coaching. Let me know if the Chronic Illness group refuses to let you do the BALI protocol.
     
  18. SaraM

    SaraM Senior Member

    Messages:
    502
    Likes:
    18
    Fejal,
    Thanks again for all the info. I have low body temperature but I easily get colds when sick people are around. I guess I better ask my doc to check my 1,25 D first and then give Bali protocol a shot if needed.
     
  19. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    Good plan Sara.
     
  20. sela

    sela Senior Member

    Messages:
    120
    Likes:
    5
    marin co, ca
    i started taking turmeric a week ago. i have gotten dramatically worse. i had thought my worsening was due to the kpu protocol which in fact is truly making me ill. since the turmeric though i have taken a bigger downturn. i was already taking milk thistle. until last year i never ever got sick with viruses, then suddenly i got two bad ones. i had chalked that up to ldn but of course have no idea. too much brain fog to know what is going on here but if there is a conclusion i would like to know the result.
     

See more popular forum discussions.

Share This Page