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Explaining in one sentence...

Discussion in 'General ME/CFS Discussion' started by golden, Aug 1, 2013.

  1. golden

    golden Senior Member

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    I am needing a list of possible causes and need some of them explaining an over view in one sentence...
    For a health form...

    i want them to have a reasonable overview of theories to be thorough

    I am not even sure i understand what Methylation Blockage is..
    Help needed!

    1) Rich Von Konynenburg . Methylation Blockage ... Chronic low glutathione. Poor ability to tolerate supplements.
    http://phoenixrising.me/research-2/...etion-theory-of-mecfs-by-rich-von-konynenburg

    2)Dr.Perrin - reverse lymph flow causing toxin build up in brain. Spinal misalignment .
    http://www.theperrinclinic.com/about.htm

    3) Dr.Hyde . - M.E. sudden onset brain enterovirus causing brain damage clear on MRI scans. There ARE physical biomarkers for M.E. It is easy to diagnose. C.F.S. is only ever a missed diagnoses of the real physical cause.
    http://www.nightingale.ca/index.php?target=aboutdrhyde

    4) Lyme disease - blood tests unreliable - symptoms of M.E. similar
    http://www.google.co.uk/search?q=pr...SAa2Y0QW26oCoAQ&start=10&sa=N&biw=427&bih=295

    5) Dr. Barry Petefield - Initial virus has damaged thyroid. Root cause therefore Thyroid and Adrenal Fatigue. Blood tests unreliable. Uses symptom check list all of which are similar to M.E.
    http://forums.phoenixrising.me/inde...thyroid-adrenal-systems-in-me-cfs-2012.20008/

    6) Alison Adams - x-dentist root cause of M.E. - dental amalgams -
    http://www.thenaturalrecoveryplan.com/about_alison.php

    7) Vaccination Damage
    http://vactruth.com/2012/10/06/chronic-fatigue-syndrome-vaccinations/

    8)Dr. Myhill - Mitochondria Dysfunction, poor nutritional status
    http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.

    9) Coeliac Disease
    http://www.dailymail.co.uk/health/a...cret-Emilys-14-lost-years-Esther-Rantzen.html


    10) Medical Ignorance of this unknown illness meant an unwarranted and exaggerated focus on psychological therapies much like MS (first called Fakers disease!) Studies show CBT and GET can prove harmful to severe cases.
    http://www.meassociation.org.uk/?p=8383

    11) Candida Overgrowth shares many symptoms of CFS
    . Its not tested for in NHS . http://www.mesupport.co.uk/index.php?page=candida-m-e

    12) POTS/OI - Blood pressure is taken lying down and standing still for 10 minutes. A rise in pulse by 30 gives a POTS diagnoses http://potsplace.com/

    13) Practitioners of Ecological medicine test for allergies/environmental causes/heavy metals/parasites etc
    http://www.drmyhill.co.uk/wiki/Practitioners_of_Ecological_Medicine

    14) Low vitamin D3- http://www.dr-forsyth.com/Dr_Charles_Forsyth/Vitamin_D.html
    I am hoping to get the super succinct version off todayish, any help much appreciated

    Thanks!
     
    madietodd and LaurieL like this.
  2. golden

    golden Senior Member

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    Right . HA !

    I have it all boiled down to four pages!!!

    Its not too bad organisational wise but I am in a cloud of paperwork :)

    Really pleased.

    On to the last part - the overview of M.E. theories ...

    Does anyone have the best link for each of the above theories - one link per theory- just in case prsctitioner wants to further research?

    Thanks

    I am going to edit the above now to try to improve it.
     
    LaurieL likes this.
  3. NilaJones

    NilaJones Senior Member

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    Do you want to add chronic, active viral infection, e.g. EBV, HH6, CMV? Dr Montoya I think would be the main one there.

    And what about POTS, and the mast cell thingie?
     
    golden likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Great idea but good luck keeping it simple. ; )

    Parasites, h pylori, leaky gut, gluten sensitivity without celiac and heavy metal poisoning should be added. Many chronic illnesses are related to gluten sensitivity. There's a thread on this
    forum about this too but I'm drawing a blank on the title. I "think" beyond started it. I added to it if it helps you find it.

    Dysautonomia / orthostatic intolerance is one area that imho needs to be evaluated much closer in pwcs. The effects of hypoperfusion were discussed by dr peckerman years ago.

    Fwiw, I'd recommend going to an integrative doctor who is familiar with these tests. I've had a lot
    of tests and can attest to how complicated some of the results are. They're are results that only
    mean something if the other values are positive or negative or within a certain range which may
    or may be considered off by whoever ran the test. These drs are up on which values have meaning.

    It makes my head swim when my doctor tries to go over these with me. Lol.

    Also, imho, Rich's theory is just a theory. Actually he used to say that himself. Sure it's a well thought
    out theory but many scientific theories are.

    The problem is that when discussing how nutrients work no one ever discusses the fact that certain enzymes and aminos
    are necessary catalysts for converting one chemical to another. And without these catalysts you're taking a nutrient that can be toxic.

    They don't discuss all those chemicals that can't be reproduced in a lab either. Or the fact that supplements can contain toxins or that the fillers can be toxic to some. If you google supplements
    toxins you'll find articles on this.

    Tc ... X
     
    golden likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    I'm back. I forgot to say that I tell people just to get the toxins and common food intolerances out of their lives, esp dietary
    ones like gluten, dairy, soy, corn and all chemicals. Eliminating all known toxins at once but
    at a reasonable pace to slow down the withdrawals will reduce your cytokine load which hopefully will
    help your body heal. No one knows how their body will react until they do it. Some body functions
    can heal but others may not.

    Imho, explaining that toxins can cause illness simplifies how health works no matter what someone has.
    Both tv programs, dr oz and the doctors discuss this regularly from what I've seen.
     
    golden likes this.
  6. golden

    golden Senior Member

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    Yes ! I will add them now. I dont know about Dr.Montaya , will look .

    Thanks :)

    If anyone knows of simpler, easier to understand links , i will change them.
     
  7. golden

    golden Senior Member

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    Yes. Stop putting toxins in....replace with nourishing things...
    but that can be difficult as a healing diet for one may not be for another!

    Plus, due to probable low Glutathione levels , the bodies major anti-oxidant , it can be fraught with complications to detox successfully ...

    Last thing you want is to mobilise stored toxins and have them floating in the body until they lodge somewhere else.

    Personally , I used the perrin technique for this problem. manual lymph drainage.

    i also upped my foods containing natural Glutathione.

    (turmeric with black pepper, asparagus , avacado, artichokr etc)

    And had epsom salt baths .

    but initially i had to be super careful as i was in a procarious block.

    I wreckon Removing Gluten and dairy are safe bets... not so sure of corn
    soy , i am 50/50 undecided. the less processed stuff maybe healthy.

    i dont like that its made in Aluminium Vats ...

    Fermented soy i am for but accept its valid to be against ...

    Again , I am a massive fan of organic short grain brown rice ...
    I think it saved my life :) When I first went macrobiotic , it healed gut issues and regulated bowel movements like never before. It soaked up loads of toxins.

    but this doesn't work for everyone , in fact i read it has the opposite effect with some and it harms them
     
  8. golden

    golden Senior Member

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    I am not a fan of supplements at all. Fortunately, nor is the macrobiotic diet , so i feel no pressure. I have feet pressure to take supplements from a naturopath and herbal person. It never really works for me.

    I am taking small amounts of yellow split pea protein , which i am ok with.

    Never been ok on omega oils and YUK :-X

    Sometimes i can manage them for a bit. much prefer to eat well. i bet there is Loads they dont know about the body and taking one isolated supplement just forces the body down a certain pathway...

    i like hearing when it works for people though O:)

    Yes, parasites and Candida.

    I cant understand methylation blockage because i immediately switch off when seeing anything about it. have tried to force myself but no , i am stubborn :).

    Yes, my one sentence - is turning into that one sentence book by thingie :)

    There are no integrative doctors in UK who are capable of 1)

    Checking all other illness has been ruled out before proceeding.

    2)systematically tailoring tests and treatments to an individual

    They all seem to be on their own trip. trying to mould people into their own mindset. It needs a flexible overview at first with then specific knowledge and testing too .
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Because we dont know the exact cause all we can say about all the findings is that they are a consequences of the illness. eg take ebv its a consequences of a poor immune system, maybe nk function but whats the cause of all that, maybe some othe infection or another deficiency be it nutritional or hormonal??

    Test as much as u can and treat what u find. Some treatments dont require testing but just a trial to see if it helps, if it does great if not ditch it and try something else. Sometimes it can be interesting to try and workout where it all fits in but then sometimes it just makes your head spin. To make matters worse, whats helped me is different to what has helped others.
     
    golden likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    Hi,

    Dr sarah myhill is in the uk and runs these tests. Maybe she knows other drs or has associates working
    with her.

    If testing isn't available, imho, the best bet is still a diet minus toxins and all common food
    intolerances. These are gluten, dairy, corn and soy because these are found in most of
    our foods today. Soy is even in newspaper ink. And treat for parasites and candida as if you had these.

    I've met a lot of people who only eliminate one or two intolerances at a time and don't see an improvement.
    I suspect that's because their cytokine levels are still too high for their bodies to heal. Or they can't
    see a connection so they assume that a food isn't a problem. If your body is
    always fighting whatever you just ate, it won't have the energy to heal itself. There's a great article on
    Prohealth about cytokines and cfs.

    I totally understand what a pia this diet is since I did it for 5 years then stopped in January. I'm getting
    some of my old symptoms back and a couple of new ones so I'm trying to get this under control. Sigh !
    The party's over for me. Wah wah wah. Lol

    I agree that slow changes are a good idea. I was forced into a major diet change all at once because I was losing weight quickly. We think I had full blown celiac disease by then. It took me about about 6 months to a year to feel better.
    But I didn't realize back then that my blood glucose was getting too low every 2 - 3 hours. That still hasn't changed.

    I'm not sure how much, if any, research has gone in to testing blood glucose regulation in cfs.

    Btw, have you seen Dr wahls videos ? I thought she did a great job of explaining healing our bodies.

    Tc .. X
     
  11. golden

    golden Senior Member

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    My head is spinning lol ...

    I just cant keep up.

    Fortunately , i sent the list off last night but these are all things i need to address ...

    I have total blind spots on:

    1)stretchy veins
    2)chronic virus Dr.Montaya
    3)cell mast thingie

    so i cant sum it up in a sentence and cant find links so if anyone does , i will add to list.

    I am still interested in a comprehensive list as a few practitioners could do with it.

    For example , i spoke of my daily antibiotics through teenage years causing terrible Candida Overgrowth which none of the drugs would cure.

    When i was 23/4 , i took matters into my own hands. had applied kinesiology , strict anti Candida diet , caprylic acid hcl etc. severe severe die off.

    but i have never had a case of thrush since .

    One doctor was convinced Candida was M.E. So when i told him i had addressed cdida , he became irritable . He started saying i must have been aggessive treatment on it so it turned itself into problematic cyst form which is hiding ....i don't think so!

    Functional Medicine is Dr.Myhills link to other medical practitioners.

    I have taken the mitochondria function profile. Guess what? it showed my mitochondria ok :( - it hadn't even occurred to me this could happen and so i did actually get very upset for a couple of days - Very.

    I started searching they internet when i found rich. i was about to post and ask for his input when he died :(
     
  12. golden

    golden Senior Member

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    The other real problem with elimination diets is they can cause intolerances somehow? and severe malnutrition. i am wary of anything other than a general well balanced diet.
    I think even Dr.Myhill found this?

    for me personally it means no gluten or dairy etc.
     
  13. golden

    golden Senior Member

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    See, here, my mito results...

    CFS profile Normal range Result Interpretation
    ATP levels 1.6-2.9nmol/10 1.76 Low Normal
    ---------------------------------------------------------------------------
    Ratio
    ATP/ATPmg more than 65 0.62 Deficient
    ------------------------------------------------------------------
    Oxidative
    Phosphorylation More than 60% 55.9 Slow due to
    deficiency
    degree of
    blockage Up to 14% 4.5
    -+----------------------------------
    Vit B3 14-30ug/ml 15.5
    ---------------------------------------
    l-carnitine 34-48umol/l 32.2 low
    --------------------------------------------------
    co-enzyme q10 0.55-2.00umol -L 0.39 low
    --------+-----------------------------------------------
    translator
    protein 'out' more than 35% 51.5 normal
    ------------------------------------------------------------
    translocator
    protein 'in' 55-75% 78.2 Rapid Depletion of ATP
    -----------------------------------------------------------------------
    Mitochondria
    function score 1.00-3.00 1.37 Low Normal
    ------------------------------------------------------------
    Cell free DNA up to 9.5ug DNA
    per dL plasma 9.9 mild increase in
    cell degredation
    -------------------------------------------------------------------------
    SODase (more than 40%) 43 Normal
    ----------------------------------------------------------------------
    Glutathione
    peroxidase 67-90U/gHb 72 Borderline selenium
    status
    -------------------------------------------------------------------------
    Glutathione 1.7-2.6mmol/l 1.62 Poor
    -------------------------------------------------------------------------

    The supplementation was disaster. Apart from epsom salt baths .
     
  14. xchocoholic

    xchocoholic Senior Member

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    Head spinning is a symptom of cfs. ; ) jk .. The amount of info one needs to know makes me a lot more
    impressed with doctors than I was before trying to learn all this.

    I'd heard that dr m at one point in her career recommended a highly restricted
    diet. She now recommends the paleo diet. Of couse everyone has to avoid their intolerances here too.

    Imho, you've got a great list. : ) I wanted to add one more.

    My cfs started out with a really bad case of bronchitis (possible walking pneumonia ?) that wouldn't clear up despite multiple rounds of antibiotics. And there's a possibility that I was give Floroquinolones repeatedly for this because
    the next thing I knew my whole body was in spasm. Floroquinolones
    caused my shoulders and knees to go out on me last Jan. I'm still not healed. I doubt anyone is tracking how often
    this happens.

    I'm exhausted from digestive problems right now so I can't read anymore. I'm not up on dr m's mito test tho.

    I thought functional and integrative meant the same thing. I prefer an md with knowledge of holistic and traditional
    treatments and tests.

    Tc ... X
     
  15. NilaJones

    NilaJones Senior Member

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    Ehlers- Danlos syndrome, caused by one of several mutations in collagen anabolism.
    http://forums.phoenixrising.me/inde...-ehlers-danlos-syndrome-stretchy-veins.20351/


    Montoya, not Montaya. A researcher at Stanford Uni School of Medicine:
    http://chronicfatigue.stanford.edu/
    http://forums.phoenixrising.me/index.php?forums/antivirals-antibiotics-and-immune-modulators.4/

    'Mast cell', not 'cell mast'.
    http://forums.phoenixrising.me/index.php?forums/addressing-mast-cell-activation.77/
     

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