Multisystem chronic inflammatory illnesses

Discussion in 'Fibromyalgia Main Forum' started by IanH, Jan 6, 2013.

  1. IanH

    IanH Active Member

    This paper is exactly what I am always on about.

    I believe the evidence for ME/CFS being a latent viral inflammatory response is ever clearer. While no single definitive study has been carried out, if you cast a thorough eye over all the literature, it points quite clearly in this direction.

    While there may be some people with a chronic fatigue problem that is not ME/CFS and probably do not have a latent viral inflammatory response the majority of current research on well selected patients shows that people with ME/CFS do.

    The treatment recommendations of this paper are also sensible for most PWME, ie.
    Vitamin D3 and Omega3 oils (EPA/DHA). This is long term treatment and will typically only show results after many months or years because the affected tissue turnover is slow. These are not drugs but nor are they foods. They supplement metabolism and tissue recovery as well as modulate the immune system, particularly in the nervous system.

    For a shorter term assistance the mitochondrial support regime helps for many people. (ie. B12, folate, B6, acetyl-carnitine, NAC, and CoQ10) but of course cannot be the answer.

    Of course there are many PWME who have other pathologies, particularly arthritis, thyroiditis and depression which compound the illness no end. However I do see good evidence around me that long term treatment with Vitd and Omegs3 is working.

    [This Message was Edited on 01/06/2013]
  2. jole

    jole Member

    I was sick constantly as a toddler, and it continued the rest of my life, except for approximately 20 years of just being 'tired' and not being able to keep up with others. Then it hit with a force that had me bedridden. The latent viral theory sure sounds like a good bet.

    I've taken B12, B6 and D3 for several years now, but not the others. Would love the oils since I have esophageal spasms and taking so many in pill form are just impossible, even with spacing them throught the day. Do you know where the liquid forms can be obtained?
  3. IanH

    IanH Active Member

    The only product which is EPA:DHA 5:1, which is what is recommended is "Source Naturals". You will need to search for it. Unfortunately PH don't have this item. However you could buy EPA and DHA separately and take a 5:1 ratio but I don't know if they would be available in the correct doses.

    Also the vitamin D must be at least 5000IU daily.

    Do you take folate as well?

    Also it is recommended that you take vitamin K2, magnesium and zinc with the vitamin D.

    I cannot take pills either so I open the capsules, put the mix on a spoon and take it with water. The oil comes in capsules though and I am not too keen on the oils taste.
    [This Message was Edited on 01/07/2013]
  4. jole

    jole Member

    That's the amount of D3 I take. I also take folate, but not sure of the amount. Also a host of others, but have found many supps. contain niacin, and that causes palpitations and irregular heart rate for me. I do not take Vit K. My SIL is a chiropractor, and keeps me supplied with supps he feels I need, but does not have all your knowledge. I enjoy reading your posts/replies (although I must say you try my brain Thanks!
  5. Mikie

    Mikie Moderator

    I don't think any one virus is "the cause" of our illnesses but I do think that, at some point, our bodies produce an ongoing inflammatory response to a virus which has gone latent in our bodies. Herpes-Family Viruses come to mind because they never leave our bodies but usually go latent. Most of us have had, or been exposed, to EBV. Many PWC's have CMV and/or HHV-6. These are only a few possibilities. I do know that when I took transfer factors which targeted these viruses, I got better. TF's were only one part of a comprehensive regimen but were essential in my treatment.

    Researchers are performing a study of peptide injections for people with Lyme. They have identified the defect in the immune system which causes a chronic inflammatory reaction to the bacteria involved with Lyme. In my case, it was a reaction to a mycoplasma infection which triggered my CFIDS/ME full blown. It's possible that I had a previous reaction to a virus which set me up for full-blown CFIDS/ME.

    So many questions which only lead to more questions. I agree that it's time to start looking more deeply to find answers.

    Love, Mikie
  6. deepak

    deepak Member

    How does this ratio of EPA DHA help ?

    Also, re folate - is it safe to take methylfolate over extended periods ? I read excess folic acid is tied to cancer risks ?

    I am taking the Carlson Vitamin K2 ( MK4) 5 mg daily and thinking to now switch to the Thorne Liquid MK4.

    I am also taking Lauricidin daily which is a broad spectrum anti viral and am happy with it - it bought down my elevated WBC count, which was elevated since 2 years since all this begun !! I kept telling the docs - is it elevated due to some infection and they kept saying I am wrong - but I KNOW my body more than THEY do !

    What remains now is mostly widespread muscle tenderness ( I feel pain when taking a massage) and palpitations/skipped beats

    But I am surely doing better than I was some time back.

    With love,

  7. IanH

    IanH Active Member

    DHA and EPA are used to reduce inflammation in the nervous system/brain which is the major risk factor in Alzheimers, depression, autism, and auto-immune diseases. They also have benefit in reducing cardiovascular inflammation. In general they both independantly reduce pro-inflammatory cytokines but EPA reduces IL-6 and IL-10, which are pushed towards the inflammatory in ME/CFS and FM, EPA re-regultes them towards the anti-inflammatory.

    The ratio EPA:DHA 5:1 has been shown to be the best anti-inflammatory ratio.,d.dGY
  8. IanH

    IanH Active Member

    Methyl-folate is safe upto 1000micrograms daily and long term. Some people with MTHFR abnormalities take much more.

    Similarly the most active form methyl tetrahydrofolic acid is safe to take long term.

    If you have cancer you need to be wary of taking folates because they interfere with the chemotherapy.

    Folates are an important part of an anti-cancer regime and are commonly deficient in people who eat little green leafy vegetables.

    Do you take magnesium?
    [This Message was Edited on 01/12/2013]
  9. deepak

    deepak Member

    So you are saying methylfolate could actually help prevent cancer ? Is Methylcobalamin also safe to take daily ?

    I was taking a lot of magnesium (1000 mg daily) for my FM kind pains and muscle tightness but I have stopped taking it now- I was wondering if maybe it has caused some sort of calcium- mg imbalance and if that is the reason I may be getting these palpitations and skipped beats.
  10. IanH

    IanH Active Member

    Yes folates do play a role in preventing cancers. But as I say if you already have cancer it does not. Yes, I have taken methylfolate for two years every day. I have only recently changed to methyl-tetrahydrofolate.

    If you were taking 1000mg of magnesium daily then stopping it would cause tachycardia and arrhythmias. Do you take calcium?

    At any rate, if you have fibromyalgia you should definitely take magnesium (400mg daily). I am surprised you are not having muscle cramps too.

    Now, regards doses. Sometimes the dose on the bottle is not the amount of magnesium but the total amount of the magnesium salt eg. magnesium citrate, magnesium glycinate etc. The advised dose for FM is 400mg magnesium, so the actual dose of the salt would be much more. UNLESS the bottle is telling you the amount of magnesium in the pill, which most do.
  11. deepak

    deepak Member

    How much folate were you taking everyday and why did you swtich to the other form ?

    i dont take calcium everyday but lately I take it off an on ....500 mg tablets maybe 2 times a week - i figured esp since I have become a vegan I need some calcium.

    I will check the amount of magnesium in the bottle. Is there some upper limit to taking magesium ?

    Also, do you know if it is safe to take methylcobalamin daily ?

    Thanks :)
  12. IanH

    IanH Active Member

    To start with I took 800mcg three times daily then dropped to 800mcg daily after six months. The reason I was on such a high dose was part of a mitochondrial myopathy program to improve the function of my mitochondria. This was along with other supplements.

    I have switched to methyltetrahydrofolate because tetrahydrofolic acid is the active form of folate. I didn't use it before because it was too expensive.

    The UL for magnesium supplement is around 350mg per day and if you take much more than this it causes diarrhea which isn't good. Higher levels than 600mg will cause problems with calcium and potassium metabolism.

    methylcobalamin has no toxicity and there is no upper limit. Most effective doses of sublingual lozenges is 1mg and could take this twice a day. Less than 10% is absorbed sublingualy, so the effective dose is upto 100mcg. The rest is swallowed and deactivated in the digestive tract to non toxic metabolites.
    [This Message was Edited on 01/12/2013]
  13. deepak

    deepak Member

    Wow I had no idea more than 600 mg would cause problems with calcium and K metabolism. Most sites online say the only side effect of excess could be diarrhea.

    I wonder if by taking 1000 mg daily I messed up my calcium metabolism and hence these skipped beats.

    Were you monitoring you potassium levels when you were taking high doses of folate ?
  14. IanH

    IanH Active Member

    But weren't you taking calcium as well when you took 1gm magnesium? If so that would offset the effect of the magnesium.

    I thought the palpitations and arrhythmia began after you stopped the magnesium.

    It is always wise to take a little potassium with these supplements.

    I was not monitoring my potassium levels regularly but did have them measured along with calcium twice during the six months. I do not take extra potassium as such but I do modify our salt (NaCl) to be 50% KCl so we get potassium with all of our cooking and at the same time less sodium.
  15. deepak

    deepak Member

    No I was not taking calcium when taking the magnesium .

    I too use Lo Salt which has more potassium in it.

    Could you mention the product name of that source naturals omega which u said has the right mix ?

  16. IanH

    IanH Active Member

    Arctic Pure EPA (but is actually 5:1 EPA to DHA) - excellent product.
  17. Ronaldo60

    Ronaldo60 Member

    .....see how many viral illnesses, especially when combined with other unusual mental or physical stresses, can lead to a mild cortisol deficiency. Cortisol is our only hormone that's anti-inflammatory and also fights auto-immune disorders. If you have hypoglycemia symptoms, check your FASTING blood-glucose level which can indicate "non-reactive hypoglycemia" which is surely a component in many CFS cases. Non-reactive hypoglycemia is usually caused by cortisol deficiency. Recommend a medical textbook that's an easy read, "Safe Uses of Cortisol" by the renowned endocrinologist William Jefferies.
    Consider how a simple hormone imbalance can affect so many things and cause so many symptoms, and consider how many chronic illnesses lead to cortisol deficiency (NIH actually found low cortisol in CFS patients, and it's been also noted in influenza).
    Don't want to rattle too many cages around here where it's all about supplements, but I suggest to anyone severely ill with a CFS illness to consider finding an open-minded endocrinologist who's willing to consider "mild adrenocorticoid deficiency." Personally, I was completely "cured" in 4 days after a hydrocortisone shot and prednisone-type pills were prescribed for something else. I maintained a low daily dose of prednisone for about 7 years, gradually tapering off.
    Lots of CFS these days might actually be depression, aging, whatever, but if you have a CFS case with several of the bizarre symptoms and you can trace the onset to a viral or other trigger, then don't ignore our hormones!
  18. lesliesue

    lesliesue New Member

    Thank Ian. This is great information.
  19. IanH

    IanH Active Member

    are contraindicated in ME/CFS