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How-I-Recovered-From-CFS-part 2

Discussion in 'General ME/CFS Discussion' started by Radio, Mar 3, 2014.

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  1. kyzcreig

    kyzcreig

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    I might be wrong but it seems to me difficult to posture an alternative mode of chronic fatigue outside of mitochondrial/metabolic dysfunction. That in and of itself however tells us little of its otherwise idiopathic origin. In fact it's a very straightforward conclusion. I don't have energy therefore the source of my energy must be dysfunctioning. I'm equally sure there are many disparate causes as well as comorbid maladies with CFS, so accepting as much doesn't actually help a great deal.

    In my own case MCS is my primary symptom and only reactions lead to something like CFS.
     
    Last edited: Apr 25, 2014
  2. Radio

    Radio *****

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    Radio: Dr. Chia has implied that :



    Chronic-fatigue-syndrome-fibromyalgia-buzz

    http://www.cortjohnson.org/chronic-fatigue-syndrome-fibromyalgia-buzz/
     
    Last edited: Apr 25, 2014
    maryb likes this.
  3. Radio

    Radio *****

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    The Vicious Cycle to Recovery (Simplified overview)

    1. I was born with inherited genetic polymorphisms in the methylation cycle as well as slow liver function. This caused my body to produce limited amounts of glutathione, which is needed to protect the body from mercury toxicity.

    2. Mercury toxicity can affect the kidney's ability to recycle sulfates. Sulfates are needed to make mucus and bile acids that protect the body from viruses and other infections. Mucus, Bile acid, and stomach acid insufficiencies can be a contributing factor in acquiring dysbiosis. See more here:Sulphation

    3. Dysbiosis related toxins can silently damage the mitochondria as well as many other areas of the body. These related toxins can overload the liver and accelerate viral inflammation.

    4. The key to my recovery was addressing all these contributing factors and focusing on slowing down the progression of my illness. I also needed to address the viral aspect in order to control the immune system's inflammatory response. I found that reducing viral inflammation and improve blood flow was the key factor in controlling my pain. I am now researching how virus can injury the calcium channels and contribute to this vicious cycle.


    Radio: Can the channelopathy theory be related to Dr. Chia work?



    A Neurological Channelopathy in Chronic Fatigue Syndrome (ME/CFS)?
    http://phoenixrising.me/research-2/...annelopathy-in-chronic-fatigue-syndrome-mecfs

    Effect of coxsackievirus b3 on ion channel currents in rat ventricular myocytes.http://www.ncbi.nlm.nih.gov/pubmed/12903773
     
    Last edited: Apr 26, 2014
  4. Aerose91

    Aerose91 Senior Member

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    What was your method of addressing viruses
     
  5. Radio

    Radio *****

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    Please refer to Dr. Chia protocols on how to address viruses. Also, forum member Hip@ has post some great info on this topic.
     
    Last edited: Apr 25, 2014
  6. maryb

    maryb iherb code TAK122

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    @Radio

    " I was born with inherited genetic polymorphisms in the methylation cycle as well as slow liver function. This caused my body to produce limited amounts of glutathione, which is needed to protect the body from mercury toxicity.

    2. Mercury toxicity can affect the kidney's ability to recycle sulfates. Sulfates are needed to make mucus and bile acids that protect the body from viruses and other infections. Mucus, Bile acid, and stomach acid insufficiencies can be a contributing factor in acquiring dysbiosis. See more here:
    Sulphation

    3. Dysbiosis related toxins can silently damage the mitochondria as well as many other areas of the body. These related toxins can overload the liver and accelerate viral inflammation."


    I've found this particularly interesting as I've crashed badly over the past 4 months - it started exactly 3 weeks after having an amalgam filling out, the last one I had out 3 years ago caused the same reaction. I was better at the time though and seemed to come out of it after about 4 months, this time not so. My recent vit/mineral result from spectracell showed very low glutathione, advice - supplement. no no - tried that, also IV - not a good response.

    I've recently tried starting a herbal a/viral/bacterial product (Samento) but the reactions were too overwhelming for me. So from this it seems I need to address the mercury before anything else, difficult as I still have 2 amalgams left in. I would definitely go for IV chelation if I was amalgam free. Another thing the useless UK government is responsible for, dentists are still using these fillings on the poor/and those unaware of the dangers.
     
  7. kyzcreig

    kyzcreig

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    Have you tried a topical glutathione supplement? I'm using both S-Acetyl-Glutathione and a topical cream and find they dramatically reduce my symptoms. The regular reduced glutathione oral supplements do nothing for me however. Frankly, I'm not sure about SAG yet but I'm going to keep taking it until I run out. The cream is noticeably effective.

    It's worth noting mercury competes with and edges out selenium which is crucial for the enzymes which reduce and recycle glutathione. This can create a vicious cycle whereby dysbiosis depletes glutathione, which is how the body deals with mercury, and then leads to an accumulation of mercury which itself encourages dysbiosis. I had severe mercury toxicity whose origin I never understood (I never had amalgams). Knowing what I know now I could postulate it was from a long standing dysbiosis which led to an accumulation of mercury from diet (I used to eat a lot of seafood) and ultimately a more severe dysbiosis and manifestation of symptoms.

    Here's a write up on glutathione recycling and what you can do about it:
    http://thyroidbook.com/blog/glutathione-recycling-for-autoimmune-disease/
    Here's one about leaky gut specifically.
    http://sanjosefuncmed.com/intestinal-permeability-clinical-unwinding-leaky-gut/
    At least in my case simply eliminating foods and taking antimicrobials hasn't cured my gut symptoms, so I plan to follow this protocol next.

    The following is a comprehensive supplement for glutathione recycling: http://www.naturalhealthyconcepts.com/glutathione-recycler-K57-90-p-apex-energetics.html
    I'm planning on taking each component individually however and seeing what I have success with.
     
    Last edited: Apr 26, 2014
  8. Kina

    Kina Moderation Team Lead

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    None of the links conclusively show any indication that fibromyalgia is a "progressive mitochondrial disorder.

    I didn't say that fibromyalgia is a 'genetic mitochondrial disorder' either. It seems you are actually discussing dysbiosis rather than fibromyalgia or CFS. I am having a great amount of trouble trying to connect your dots.

    http://www.backtolifehealth.com/Dysbiosis.htm

    Have you read either the ICC or CCC -- is it possible you have recovered from dysbiosis rather than CFS. Your story seems to indicate this. In this day and age where antibiotics are given out like candy, I am sure many suffer from it and fixing this would be helpful.

    I am not interested in buying Vasquez's books.
     
  9. maryb

    maryb iherb code TAK122

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    Sorry I can't read back through this thread so maybe this is not helpful.
    I was ill with ME for several years - maybe 4 before I developed FM, I thought until that time I'd been so lucky hearing about others suffering but it got me in the end too.
    It is helped by a gluten, dairy, sugar free diet in addition to avoiding lots of others things I am intolerant to.

    @kyzcreig
    thanks for the links and the info - maybe something I can tolerate topically, maybe worth a try. I tried coffee enemas to raise glutathione but don't actually have the energy or strength to physically do it all, preparing, cleaning etc. Also they wiped me out as well.
     
    tdog333 likes this.
  10. snowathlete

    snowathlete

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    We're all dfferent, as they say...

    Some useful bits of information posted, but I'm not convinced this protocol is going to result in many recovering from their disease. It certainly would not resolve my issues and may even make some things worse. Most of us have tried much of this stuff already, or ruled bits of it out. I very much believe that improving gut health is important, and the root cause may, possibly, be there too, but I don't expect to recover as a result of what i can do to improve my gut because we need solid research first to pinpoint problems, else we are just groping semi-blind in the dark.

    Some statements made by doctors, or information about how they manage their patients, looks out of date. I'm a patient of KDM and his approach is different, at least for me, than was stated earlier in this thread. That video that is linked was recorded in 2008. Thats 6 years old.
    In the case of Rich, the guy isn't around now sadly, but if he was I'm sure some of this views would have evolved because he was very adaptive, and was on the ball with the latest research. Of course, this isn't a reason not to quote Rich, and a lot of what he wrote in the past is still useful, but I think it's important to put things in context.
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, dysbiosis sounds more likely than ME/CFS as, from what you have posted, you were missing some of the key symptoms of ME/CFS. (see the ICC and the CCC)

    As Snowathlete mentioned, many of us have tried/done the steps which you indicated had helped you and they had minimal effect as many/most of us are dealing with viruses, intracellular infections, complicated immune dysregulation, and brain dysfunction--as well as dysbiosis which is probably secondary.

    Glad you found significant improvement, but the thread title you chose is probably misleading from what you have posted.

    Sushi
     
  12. Kina

    Kina Moderation Team Lead

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    I really think it's quite important to consider mitochondrial dysfunction but not in terms of gut issues. For example Julia Newton's work and the work of Lucy Dechéne, Ph.D. Lucy Dechéne also has provided a Review of Nutritional Supplements Used for CFIDS/FM . These ME/CFS researchers don't even mention dysbiosis or leaky gut as part of their work which doesn't surprise me at all.

    I follow the research of those who are doing research to find answers rather than follow the work of those trying to make money off us.
     
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  13. CFS_for_19_years

    CFS_for_19_years First Do No Harm

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    What kind of diet would you recommend for someone with CFS/FM and compromised kidney function (elevated creatinine and lowered eGFR)? Kidneys may have been damaged by too many analgesics (aspirin, tylenol, maybe other NSAIDs).
     
  14. Radio

    Radio *****

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    Radio:
    I disagree, hydrogen sulphide can inhibit mitochondrial function relating to sulfate-reducing bacteria as well as many other gut toxins. I think mitochondrial function is absolutely related to gut dysfunction. I'm not saying this is the only contributing factor as viral inflammation could big player as well.

    Also, high dose lipid replacement therapy was the critical factor in my recovery.








    Fermentation in the gut and CFS

    http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
    The De Meirleir Experience
    http://forums.phoenixrising.me/index.php?threads/the-de-meirleir-experience.21586/
    Gut inflammation in chronic fatigue syndrome
    http://www.nutritionandmetabolism.com/content/7/1/79
    International ME/CFS clinicians and researchers
    http://www.mecfs-vic.org.au/international-mecfs-clinicians-and-researchers
    Nicolson 2014 - Use of Natural Supplements to Improve Mitochondrial Function (CFS)http://forums.phoenixrising.me/inde...-to-improve-mitochondrial-function-cfs.28103/
    Read more: Me and Dr. Chia : A Chronic Fatigue Syndrome Patient Visits Dr. Chia http://www.cortjohnson.org/blog/2013/02/23/me-and-dr-chia-chronic-fatigue-syndrome/
     
    Last edited: Apr 26, 2014
  15. boohealth

    boohealth

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    south
    @kyzcreig what creams are you using (percentage, carrier, any URL or weblink)? Thanks
     
  16. Radio

    Radio *****

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    There are many possible contributing factors that can overwhelm the body's metabolism such ; lyme disease, viruses, non-cytolytic viruses, mold, toxic exposure as well as dysbiosis, endotoxins and even physical exertion can all dramatically affect the liver's detoxification process. Chronic viral infections and mercury toxicity have been associated with chronic inflammation of the liver and kidneys, further inhibiting PST enzyme as well as sulfate recycling. See more here: http://healthyawareness.com/thread-phenol-sulfotransferase-pst-and-the-feingold-diet

    Sulfate recycling in the kidneys can possibility be blocked by mercury which can accumulate if glutathione is depletion. Sulfate has several important jobs that including sulfating DHEA and toxins including phenols from many foods. There is also the NaSi-1 gene that can possibility be inhibited by mercury and contribute to the faulty sulphate transporter proteins. Sulfate-reducing bacteria in the gut can also be a problem as it is needed to convert sulfate to hydrogen sulfide, which is toxic at high enough levels. Sulfate is also required for mucus / bile acid production need for many protective functions in the body. These insufficiencies can be a contributing factor in acquiring dysbiosis. Bacteria and yeast overgrowth can also produce hydrogen sulfide (H2S) that can bind to the mitochondrial enzyme cytochrome c oxidase, part of the electron transport chain in the krebs cycle. This can also impair oxidative phosphorylation and ATP production. When mitochondria become damaged due to a buildup of toxins, energy production is greatly impaired. Ultimately the mitochondria pays the price for the livers weak detoxification ability.

    Sulfate Versus Sulfur Reducing Bacteria
    http://forums.phoenixrising.me/index.php?threads/sulfate-versus-sulfur-reducing-bacteria.6473/
    Molecular aspects of renal tubular handling and regulation of inorganic sulfate :thumbsup:
    http://www.nature.com/ki/journal/v59/n3/full/4492098a.html
    Renal Na-Si cotransporter NaSi-1 is inhibited by heavy metals.
    http://www.ncbi.nlm.nih.gov/pubmed/9486223
     
    Last edited: Apr 27, 2014
  17. kyzcreig

    kyzcreig

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    I was using Kirkman for a while until I found the slightly cheaper Swanson product.
    http://www.amazon.com/L-Glutathione-Cream-Setria-59/dp/B0091QY1OU
    http://www.amazon.com/Reduced-L-Glutathione-Lotion-2-oz/dp/B004PLTCVS/ref=sr_1_1?ie=UTF8&qid=1398557312&sr=8-1&keywords=kirkman glutathione

    Kirkman might be a bit more effective but not much more enough to justify the cost.
     
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  18. Kina

    Kina Moderation Team Lead

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    http://www.ncbi.nlm.nih.gov/pubmed/9486223
    This study dealt with FemaleX. laevis toads. This study does not make any conclusions regarding the health status of humans. It was also dealing with heavy metal intoxication.

    http://www.nature.com/ki/journal/v59/n3/full/4492098a.html

    Again, this paper did not involve humans and clearly states there is little data to apply the findings to health and disease.

    @Radio - it's really important that you don't use this kind of research to make definitive statements about health and disease.
     
    boohealth likes this.
  19. Radio

    Radio *****

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    Radio: I'm want to make it clear, we are talking about possible contributing factors. Definitive statements are not my intentions, everything is open for interpretation.


    The question I am asking is sulfate deficiency a factor and can mercury and other heavy metals inhibit NaSi-1gene contribute to a sulphate transporter proteins deficiency needed for sulfate recycling? This is one of many possible contributing factors that can be related to sulfate deficiency.

    Renal Na-Sicotransporter NaSi-1is inhibited by heavy metals
    http://ajprenal.physiology.org/content/ajprenal/274/2/F283.full.pdf

    Radio:
    "We need to challenge ourselves and ask the right questions in order to have full understanding of the root cause of disease."





    Chronic fatigue syndrome, Fibromyalgia, Scleroderma, Lupus, Rheumatoid Arthritis, MCS: the mercury connection?

    http://www.flcv.com/cfsfm.html

    Rosemary Waring

    http://en.wikipedia.org/wiki/Rosemary_Waring
     
    Last edited: Apr 27, 2014
  20. Radio

    Radio *****

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    The food we eat can have a dramatic impact on many chronic illnesses in general. Diet is a hug factor in my recovery protocol. If our PST Phase II detoxification pathway is not working, I found that diet can really help control the inflammatory response cause by this "possible" dysfunctional metabolism. I really like this approach to healing the body. Please read this thread and the information about free radicals, antioxidants and functional foods.

    Free radicals, antioxidants and functional foods: Impact on human health
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249911/

    CFS and impaired sulphur metabolism http://forums.phoenixrising.me/index.php?threads/cfs-and-impaired-sulphur-metabolism.2930/




    The information on this thread is not intended to be medical advice. The information is meant to inspire and motivate you to make your own decisions surrounding your health care. It is intend to be for informational purposes only. Readers should perform their own research and make decisions in partnership with their own health care providers.
     
    Last edited: Apr 27, 2014
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