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Thoughts on CFS, histamine/MCAD, and toxicity.

Discussion in 'General Treatment' started by Sam7777, Dec 12, 2015.

  1. Sam7777

    Sam7777 Senior Member

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    here's a question to those who've been dealing with it a while and hopefully have a bit of the science details familiarized: What is it that exactly causes people to have mast cells more prone to degranulation or hyper activation? I mean is there anything that stands out in particular as being guilty of causing this sort of immune balance?

    I also find it interesting that while some people have really overt mast cell conditions like asthma or as the histamine chef talked about 'projectile vomiting after exercise' 'or getting sick on a plane', other people like me seem to just have really intense chronic fatigue that comes with histamine causing foods and stress in general. I also think that arguably some people who have Rheumatoid arthritis probably have a bit of this going on. I have noticed a lot of RA people seem to really respond well to a vegan diet. ..(it would be much lower histamine generally).

    I notice that people with fully developed ME/CFS often have mast cell issues. So it seems something escalates the imbalance. What I partly blame for this at least in a rudimentary way, are arachidonic acid + low omega 3 + not enough resolution in inflammation, i.e., chronic inflammation, mast cells will release tons of leukotrine and prostaglandin and for some *reasons* the body doesn't have enough of the omega 3 end products (resolvins, protectins) and anti-inflammatory arichidonic acid end products (lipoxins).

    As for omega 3's I know they help. I mean I know that's one of the giant causes- too much omega 6. I use to eat 30 fish pills during flair ups several years ago. ..but I didn't know that's what it was at the time. It was just something I figured out.

    I've found some interesting articles, and even a chinese formula that is noted to affect this particular immune imbalance. Someone also mentioned to me that they take a thymus glandular, cytosol extract, as well as bone and kidney.

    Also unsurprisingly Cannabis is one of the only things that seems to actually promote resolution of inflammation in the literature (I can't find anything else that does) as opposed to just blocking it out with NSAIDS. (TL;DR cannabis enhances lipoxins which do the opposite of the leukotrines that things like berberine or ursolic acid, tea, luteolin, quercitin block (LOX inhibitors). Blocking luekotrines vs. increasing lipoxins).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3464915/

    This formula + Reishi. http://www.americandragon.com/Herb Formulas copy/WuMeiWan.html

    https://en.wikipedia.org/wiki/List_of_therapeutic_monoclonal_antibodies

    http://www.itmonline.org/arts/lox.htm

    But certainly more and more, I'm leaning towards water fasting. Total avoidance of food intolerances are about the only thing that ever helped. At least, for me it was a pesco-vegetarian diet that allowed me to originally recover for a while before I chelated incorrectly. I had simply 'accidentally' discovered a low histamine diet.
     
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  2. halcyon

    halcyon Senior Member

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    I think if we knew the answer to this question we'd be a lot closer to understanding the cause of the disease. My guess is that it's due to the particular immune shift that seems to occur. Over the first three years of the illness our th1 cytokines start to burn out or are dysregulated, while the th2 side starts to pick up for some reason. We also start to display increased eosinophil chemotaxis and these immune cells contain many of the same nasty preformed mediators that mast cells do.

    You may find the recent Columbia CSF cytokine study interesting, they discuss this a bit. They believe it might have something to do with the abnormalities they found with IL1ra and GMCSF, which are apparently known to be involved in granulocyte regulation and downregulation of response to allergic stimuli.
     
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  3. Timaca

    Timaca Senior Member

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    I don't have any answers for you, but I'm in the same boat you are in. Hopefully, we are paddling towards better health!! :thumbsup:

    I seem to have a histamine intolerance. I also highly suspect a benzoate intolerance. I also have tested positive for a wheat allergy and oat allergy at the allergist's office via percutaneous testing. I *seem* to have multiple other food intolerance (perhaps allergy--not yet tested). I also did well on a pesco-vegetarian diet.....until my mercury levels went too high.

    I don't believe I have mastocytosis, but will be having an endoscopy on Monday and a biopsy will be done for that.

    I suspect that the chronic viral pathogens that I'm battling for my CFS has set off all these food allergy / intolerance issues in me. For now, I want to get to the bottom of what these oral petechiae / purpura are that I have. You can read some about that and a few other of my discoveries on my blog: You Season with Love.

    Paddling on!!! :)
     
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  4. Old Bones

    Old Bones Senior Member

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    Add me to those paddling in circles, looking for an answer to the dietary problems associated with this illness. A horrific ache down the entire left side of my body after eating foods away from home was one of my first unusual symptoms, apart from feeling like I'd been "run over by a truck". I eventually linked the ache to benzoate sensitivity. I also developed boils on my face anytime I ate meat or poultry raised with hormones and/or antibiotics. This led to an eight year period as a lacto-vegetarian. I abandoned this eating plan, after being advised ME patients do better on a high-protein diet. For the next ten years or so, as long as I avoided food additives/preservatives, I quite comfortably ate everything but high-glycemic/refined carbs, which caused severe heartburn. Then, right around menopause, it seemed food was becoming the "enemy", with burning hands and feet, nausea, worsened fatigue and increased sensitivity to sunlight. My hands started going numb, and I would stumble after eating grains. Shortly thereafter, I was diagnosed with Rheumatoid Arthritis in addition to ME and FM. For the next five years, I went on a gluten/grain-free diet, but still wasn't getting much relief. So, I progressed into the even more restrictive GAPS diet, which provided some digestive benefits, and also confirmed my suspicion of histamine intolerance, and SIBO. But, after six months on the early stages of the GAPS diet, unable to add foods in because of histamine reactions and the return of severe bloating and other digestive issues too "icky" to mention, I have lost 15 pounds that I couldn't afford to lose in the first place. So, I'm wondering what to try next, since my collection of food intolerances leaves very little I can eat without worsened symptoms. Guess it's a matter of determining which reactions I can best tolerate. Good luck, everyone, with your own dietary challenges.
     
    Last edited: Dec 12, 2015
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  5. Sam7777

    Sam7777 Senior Member

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    The thymus glandular extract according to one of the companies evidently increases GMCSF. Question is if that is even a good thing in each little context.
     
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  6. Sam7777

    Sam7777 Senior Member

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    Well I'm basically going to try to do as much pesco-vegetarian low sulfur/thiol, low-histamine as possible. And try to limit oxalates and salicylates some. I indeed don't feel well with out a certain amount of protein and animal food. And I have a tendency to under eat. I'm significantly overweight, but I don't eat. But with chronic fatigue and in my case mercury, well you need basic food. A lot of the crazy vegan sorts always made a good point,- you can't get better on a low calorie diet, it stresses you.

    There is a very good forum for this on facebook https://www.facebook.com/groups/lowhistamineAIP/

    As for some of these studies, I'll link the ones I've read for anyone who wants to wade through it.

    http://geneticgenie.org/blog/2013/0...-chronic-illness-and-its-role-in-methylation/

    http://www.auletta99.net/uploads/978-1-63482-842-0_eBook.pdf#page=145
    http://www.auletta99.net/uploads/978-1-63482-842-0_eBook.pdf#page=157

    http://www.sciencedirect.com/science/article/pii/S0925443910002929

    http://www.fasebj.org/content/23/5/...searchid=1&FIRSTINDEX=2400&resourcetype=HWCIT

    https://www.researchgate.net/profil..._arthritis/links/00b495237a13895061000000.pdf
     
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  7. Rlman

    Rlman Senior Member

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    i think i remember reading that a person decreased her histamine intolerance with eft (emotional freedom technique). Even histamine chef said visualization helped I think. Also DNRS has testimonials of helping people who were intolerant of almost all foods. Maybe that could help?
     
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  8. ahmo

    ahmo Senior Member

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    Activated B2 (FMN), following intensive candida/bacteria purge, eliminated my ongoing need for antihistamine, mast cell stabilizers. My MC symptoms are relatively benign, but had been persistent. Now I can eat a spoonful of yogurt, sauerkraut every other day, + avocado. There are a lot of papers available at mastcellmaster.com.
     
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  9. Sam7777

    Sam7777 Senior Member

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    @ahmo I agree with Theoharides about it being largely related to CRH and leaky gut leaky brain. That was what I found in the literature as well.

    What I really seem to see at the bottom of all auto immune and chronic fatigue and chronic environmental illness are stress events, leaky gut, and now evidently leaky brain. Leaky brain is basically the granulocytes getting in and spreading inflammation, or I believe the case was that histamine creates the weak junctions in the BBB.

    I do have a severe history of stress. Really intensely stressful childhood and really intensely stressful college after a period of healing. I had issues with stimulants in college that really seemed to tip me over. Though it was still improperly chelating that totally dysregulated me.

    I don't know if any frequent members here have read any of Jack Kruses blogs. But he really focuses on how the nervous system gets dysregulated by artificial lights and modern lifestyles. He explains it very mechanistically. He says that peoples paraventricular nucleus in the brain is damaged and that this leads to adrenals that are off their clock basically. The broke adrenals are actually a result of a perpetually inflamed PVN. Jack's big emphasize is pretty extreme. He wants you to have a dead switch for your electricity to your house and a magnetico pad. Which I'm not saying that isn't relevant but its not the full issue. Jack's other emphasize is on cold treatment therapy.

    Like if I had to be entirely honest at this point I'd say that to calm the immune system down, it'd come down to.
    -Camp in the woods or go on a hunting trip for a month with limited iphone/laptop
    -constant ice baths (Wim Hof method)

    Truly calming down the immune system is almost a matter of extremism. I only had really 2 good years of health. I use to avoid messing with a computer when I first woke up. I spent a lot of time trying to just get out on a trail walking to give my brain time to process in nature and isolation.
     
  10. justy

    justy Senior Member

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    Yes - I have noticed a VERY strong correlation on the MCAD boards with EDS and with Lyme. I have M.E, EDS III and Lyme and co infections. My M.E Dr says that about 30% of his M.E patients have EDS. I don't fully understand the connection but its to do with connective tissue - I haven't really taken the time necessary to think about it too much. A lot of the people I know on the FB Lyme forums develop MCAS after either having undiagnosed Lyme and co for many years, and or if they also have EDS - I am not even particularly hypermobile but received the diagnosis last year at the age of 45 - I see issues of this with my children as well. People with EDS also seem to have problems clearing infections like Lyme.

    Asthma is not always an MCAD - but can be related to IGE allergies - that is what causes my asthma and is not the same as my MCAS.

    Fish is one of the highest histamine foods you can eat, unless frozen at sea or unless you are a fisherman and catch and cook it within a couple of hours.
     
  11. trails

    trails Senior Member

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    @ahmo, could you please tell me if activated B2 (FMN) is the same thing as a chelated B2 supplement? Thank you!
     
  12. ahmo

    ahmo Senior Member

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    @Sam7777 I also had stressful childhood, much stress through the years.

    Re electricity...I'd gotten myself grounding mats and sheet. After awhile, I experimented and found, according to self-testing, that my body finds raw wool to be equally good. I now use old wool mattress covers to sleep on, and under my arms at desk. cheap and easy.

    FMN, as far as I've been able to determine, is the same as r5p. But not the same as B2, the inactivated kind.
     
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  13. Sam7777

    Sam7777 Senior Member

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    And then there's this. ugh. My strong suit isn't immunology, compared to other areas. But this is definitely something to consider about the over activity of th2 and mast cells and eosinophils in general. I suppose its important to keep in mind how many things can aggravate this: mold, metal, SIBO, bacterial gut infections, lymes, ebv, . . a rather broad umbrella.

    But just today someone in the fb histamine AIP paleo group said that on the SCD diet with liver detox and help from a functional doctor who did a igG and organic acid test, they basically attributed their mast cell issues to SIBO and a moldy basement and a ton of candida. . now their histamine intolerance is basically disappearing.

    This is the columbia study. http://advances.sciencemag.org/content/1/1/e1400121.full

    "
    Fig. 2Network cytokine-cytokine associations differ for short-duration versus long-duration ME/CFS versus control subjects.
    (A to C) Network diagrams for short-duration ME/CFS subjects (A, n = 52), long-duration ME/CFS subjects (B, n = 246), and healthy controls (C, n = 348). Network diagrams of the 51 measured cytokines were created in NodeXL (http://nodexl.codeplex.com) using a 0.01 family-wise false discovery rate (FDR) to adjust for multiple comparisons (A, short-duration group, P = 0.0065; B, long-duration group, P = 0.0081; C, control group, P = 0.0075). Red lines (edges) indicate negative correlations, and gray lines indicate positive cytokine-cytokine correlations with associated P values that fall below the corrected P value criterion for each group. Note that whereas CD40L drives most of the inverse relationships with other immune molecules in both the long-duration ME/CFS and the control groups, CD40L is only related to five other cytokines in the short-duration ME/CFS group, and only one of these associations is negative (inverse relationship with IL-12p40). Similarly, PDGFBB is a negative driver of many other cytokines in both long-duration ME/CFS and control subjects, but shows no negative correlations with other cytokines in the short-duration subset.

    "
    [​IMG]
     
  14. Sam7777

    Sam7777 Senior Member

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  15. Chriswolf

    Chriswolf Senior Member

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    IIRC we don't test for mast cell disorders in Canada, however I did respond well to hydroxyzine with regard to some of my symptoms, it just so happens that the antihistamine in it kicked the absolute crap out of me and I was feeling the effects two days after taking a single 25mg dose.

    Would anyone know if cromolyn sodium work any better? I do seem to have an exaggerated reaction to antihistamines in general, I prefer not to use them. I would like to try cromolyn if I could get more of the beneficial effects without it laying me out for an entire day.
     
  16. Sam7777

    Sam7777 Senior Member

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    The selfhacked website proves to be quite labrythine and quite educational. The guy really has chronic environmental diseases down to an art form. (Except he doesn't understand cutler's work)

    I'm pretty sure th1/th2/th17 imbalances affect mast cell activation. I suspect I'm overactive in all wings of the immune system, but especially th2. I do a lot of things to skew me to th2, chelation, coffee, certain herbs.

    Has anyone ever tried to purposely raise th1 function? I think this could help quiet mast cells.

    "Some" stuff that raises th1 function:

    choindroitin sulfate
    grape
    apple
    skullcap
    ginger
    ginseng
    andrographis
    bilberry
    fenugreek
    oregano
    bromalain
    buckwheat
    carob
    oleanic acid
    resveratrol
    olive leaf
    NAC
    gynostemma
    reishi
    tinospora
    astragalus
    black rice
    schisandra
    butterbur
    burdock
    cordyceps
    Retinol (butter,egg)
    horny goat weed
    lion main
    proline rich polypeptides
    colostrum
    lactoferrin
    artemisinin
    echinacea
     
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  17. Chriswolf

    Chriswolf Senior Member

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    I don't know much about Th1 and Th2 except I did find this

    At face value this does not seem like the sort of function I would like to up-regulate, however perhaps there is a lack of understanding on my part. I am however going to be trying NAC in the near future here just to see how it helps with my energy levels as I'm not doing so well on that front at all.

    I'll report if I notice an increase or decrease my allergic/mast-cell response as well.

    Colostrum is something I've used in the past and IIRC it is an immunoregulator and has worked well in quelling my GI problems, so perhaps there's something I'm not understanding or misinterpreting.

    I think that's one of the worst aspects of having CFS, is figuring out your way around the possible causes and mediators of your illness, as it seems CFS can be a manifestation of a variety of problems.

    EDIT

    So apparently one of the main potential issues with NAC is some kind of anaphylactic reaction, lol, that does not bode well for me as I'm pretty sure I have mast cell issues. The improvement in sjogrens-type symptoms as well as increasing ATP is enough to warrant cautious experimentation however.

    It also appears to be an effective (albeit painful) way of differentially diagnosing a stomach ulcer, sounds like fun...
     
    Last edited: Dec 22, 2015
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  18. Sam7777

    Sam7777 Senior Member

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  19. Chriswolf

    Chriswolf Senior Member

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    I recall seeing this previously, I don't even know if it's possible, but it seems as if I have signs of both Th1 and Th2 dominance, as in mutually significant signs that leave me with more questions than answers.

    I suppose I'll have to see if I can get it tested.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    My MCAS specialist told me not to take NAC and it can trigger anaphylactic reactions like you said vs. using glutathione itself which is what I have been doing. I know we are all different so this may not pertain to you but just wanted to mention it.
     
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