1. Patients launch a $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!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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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. Radio

    Radio *****

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    MY STORY
    My symptoms first became evident in my early twenties. I had extreme chemical sensitivity and was intolerant to any alcohol indulgences. I developed skin issues, food allergies, and insomnia. In my early thirties I began to develop muscle atrophy which could not be clearly diagnosed. I also had digestive issues and frequent abdominal pain. I have been studying nutrition and researching books that were health related for many years. I began eating a diet very similar to Atkins. I was successful in maintaining my health but still had digestive issues and muscle pain. In 2011 I tested positive for H pylori and was treated with a toxic antibiotic protocol. Soon after I developed numbness in my left hand and later discovered through my own lab testing I had a B12 deficiency. At this point I began studying the text-book of Functional Medicine. I initiated the four gut healing protocol program and supplemented the B12 deficiency. I was feeling better. I started following a modified paleo diet regimen. However, I was still experiencing fibromyalgia symptom. In 2012 I got really sick and my body was experiencing flu like symptoms. I started losing weight rapidly. I experienced a one hundred pound weight loss in less than a year's time. I was convinced that I was dying and was ready to giving up on life. I was so weak, I could not do simple daily functions we often take for granted. I was unable to continue working due to my lack of stamina. I had extensive testing done with a functional medicine doctor and often found myself searching for testing that I could have run on myself through independent labs. This is when I discovered Dr. Amy Yasko's work on autism and nutrigenomics. I studied her work, as well as Dr. Sarah Myhill's. I also referenced Fred Davis' protocol and began the extensive research needed to heal my self at any cost. I developed my own recovery protocol. I started feeling better. In eight weeks, combined with my anti-inflammatory diet and mitochondria support, I regained my energy and fully recovered from chronic fatigue. I hope my story can inspire others to see that recovery is possible.


    Hypochlorhydria + Dysbiosis + Chronic inflammation = Acquired Mitochondrial Damage



    I am convinced that the toxic waste produced by the pathogenic bacteria can be very damaging, especially when we are not methylating RNA, DNA and phosphatidylcholine. Acquired mitochondria damage is a normal part of aging and for unknown reasons is accelerated in this syndrome. The immune system and viral infections are in the crossfire in this metabolic disaster. There needs to be a balance in methylation and gut fermentation. The human microbiome and the methylation cycle are connented at the hip in a manner of speaking. We do have some understanding of the methylation at this point. We are in the dark ages when it comes to human microbiome. We need more information on dysbiosis relating to methylation and environmental factors. The immune system and the mitochondria are critical in these metabolic imbalances.


    What is the root cause of the dysbiosis imbalance?



    Let's add in H-pylori and gastritis into the mix. H-pylori infection can dramatically reduces stomach acid. This could be the main problem contributing to dysbiosis imbalances. Hydrochloric acid deficiency and heavy metal toxicity can be a issue in this dysfunctional metabolism. The body needs (HCL) to help make minerals and nutrients more absorbable and to achieve the correct flora balance. Stomach acid is also required to liberate vitamin B12 from food. Intestinal bacterial overgrowth can produce histamine, hydrogen sulfide, hydrogen peroxide, tryptophanase, d-lactic acid and endotoxins. This could be the root cause of this metabolic damage. We need to build a diet and treatment protocol that fits in perfect harmony with nature's grand design of health and wellness.



    The TRUTH about Stomach Acid!



    Dysbiosis, Inflammation, Autoimmunity: Lupus, Rheumatoid Arthritis, Psoriasis, Sjogrens syndrome


    Small intestine bacterial overgrowth (SIBO, dysbiosis) causes Fibromyalgia (corrected version)




    Alex Vasquez, D.C., N.D.

    http://www.academia.edu/3862817/Nut...etal_Inflammation_and_Chronic_Health_Problems



    Hypochlorhydria lack of stomach acid - can cause lots of problems

    http://drmyhill.co.uk/wiki/Hypochlorhydria_-_lack_of_stomach_acid_ _can_cause_lots_of_problems
    Hypochlorhydria / Wiki
    http://en.wikipedia.org/wiki/Achlorhydria
    Salivary test for hypochlorhydria
    http://drmyhill.co.uk/wiki/Vascular_endothelial_growth_factor_(VEGF)-_salivary_test_for_hypochlorhydria
    Helicobacter Pylori: Not Just A Third World Problem? http://www.stopthethyroidmadness.com/h-pylori/
    Gastritis / Wiki
    http://en.wikipedia.org/wiki/Gastritis




    Dr. Myhill, Hydrogen Sulfide





    Mitochondria Cytochrome C Oxidase Connection


    Cytochrome c oxidase

    http://en.wikipedia.org/wiki/Cytochrome_c_oxidase


    http://lpi.oregonstate.edu/infocenter/minerals/copper/


    Hydrogen sulfide
    wikipedia.org/wiki/Hydrogen_sulfide



    Histotoxic Hypoxia

    http://en.wikipedia.org/wiki/Histotoxic_hypoxia
    Oxidative phosphorylation
    http://en.wikipedia.org/wiki/Oxidative_phosphorylation






    Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study
    http://forums.phoenixrising.me/index.php?threads/interview-ian-lipkin’s-million-dollar-appeal-for-microbiome-study.28139/

    In CFS/ME, Professor De Meirleir treats diet first. Then he treats abnormal gut flora. He says it takes a year to recover gut function.
    http://cfstreatment.blogspot.com/2013/01/interview-with-dr-byron-hyde-and.html
    Last edited: Mar 10, 2014
  2. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    What a great loss to our community when Rich V left this world. What a gracious and knowledgeable man.
    snowathlete, amaru7, shannah and 5 others like this.
  3. Radio

    Radio *****

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    Last edited: Mar 10, 2014
  4. Radio

    Radio *****

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  5. Radio

    Radio *****

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    Last edited: Mar 13, 2014
    Gondwanaland likes this.
  6. Radio

    Radio *****

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    Last edited: Mar 11, 2014
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  7. Radio

    Radio *****

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    The Silent Liver Damage

    H-pylori infection can dramatically reduce stomach acid production. Hydrochloric acid insufficiency could be the main contributing factor to the bacteria over-growth we are seeing. It also could be the underlying cause of the acquired mitochondria damage. I believe we have a genetic factors as well as environmental issues that make us vulnerable to this illness.

    The next main issue is the weak liver detoxification and genetic variation genotypes, combined with methylation block and and other chronic deficiencies. The mitochondria can function normally and make all the ATP we need, until a large percentage gets damaged. Now all we needs is a trigger; lyme, viral, mold, toxic exposure or even physical exertion. The elephants in the room are H-pylori, HCL insufficiency, unidentified dysbiosis, and weak liver detoxification. Different organs may get damaged as well in this metabolic dysfunction. The liver damage could be a factor in the hypoglycemia, glycogen storage issues. The hydrochloric acid insufficiency could be related to this silent liver damage.

    The Silent Liver Damage

    http://forums.phoenixrising.me/inde...man-health-pathways-to-modern-diseases.28937/




    The Keys To My Recovery


    1. Functional Medicine Practitioner (Laboratory Testing / Protocol Support)

    2. Modified Paleo Diet + (Glycogen Supportive Foods) + (Beneficial Fermented Substrates)

    3. Balance gut organisms (H-pylori / Dysbiosis Support) + (Digestive Aid)

    4. Mitochondria Support (Lipid Replacement Therapy) + (CoQ-10 Ubiquinol / Vitamin E Support)

    5. Methylation / Mineral Support (Fred Davis' protocol) + (SAMe / Vitamin D Support)

    6.
    Liver Detoxification / PST Sulfation / Sulfate Support) + (Comprehensive Liver Testing)

    7. Spiritual Support



    Limit Vitamin P5P
    <=== Pyridoxal-5-Phosphate inhibits the PST (phenol sulphur-transferase) activity. P5P is not water soluble and can build up in the body damaging the peripheral nervous system.

    The PST sulfation pathway is necessary for the breakdown and removal of certain toxins in the body. This includes the processing of a type of chemical called a phenol. If the Sulfation pathway is not functioning well, a person may not be able to process out the phenolic compounds as fast as they consume them. One of the main reasons for low functioning PST is low sulfate in the body. Sulfate is essential to keep PST functioning. Sulfate is also necessary in maintaing the integrity of the intestinal lining.

    Low sulfate levels = increased intestinal permeability (leaky gut).

    Low sulfate can occur for a variety of reasons. Some gut infections bacteria / yeast can produce large amounts of phenols, which may overload the PST enzyme.




    Lipid Replacement Therapy

    I found the NT Factor® Energy Lipids Powder worked the best for me. (Dose: 1 scoop powder 2-4xday). I like Now foods Super Enzymes for digestive aid support on a empty stomach with the NT Factor support. I supplemented with the lipids for 2 months and recovered soon after combined with the keys to my recovery I have outlined in this thread. I plan on utilizing lipid replacement therapy for the rest of my life.

    Nutricology-Energylipids-Powder-150-Gram

    http://www.amazon.com/Nutricology-E...1_2?ie=UTF8&qid=1394736221&sr=8-2&keywords=NT Factor® Energy Lipids Powder




    Tryptophan / NAD+ Deficiency

    Viruses and mineral depletion (HCL insufficiency) can also affect the NAD Synthesis. My main concern is the NADH recycling anaerobic metabolism (ADP to ATP) imbalance. This is the reason why it's import to supplement to bypass the depleted NAD+ synthesis. Tryptophan, Nicotinamide, NAD, NADH, R- lipoic acid can help compensate for the NAD+ deficiency.



    Transmethylation
    is the most important methyl group donor. We need methionine and SAMe to make phospholipids to maintain mitochondrial cell integrity. The HCL insufficiency can also cause intercellular mineral deficiencies. I recommend the toxic urine metals test from Doctor's Data. Also, it is essential that all amalgam fillings be removed by a qualified holistic dentist. http://www.canarys-eye-view.org/supplements/sammy.html



    H-pylori / DysbiosisTreatment Info


    See more about H-pylori info at
    , http://www.mygutsy.com/is-h-pylori-...sorders-adrenal-fatigue/#sthash.1KzwEYym.dpuf
    Dysbiosis and Multifocal Dysbiosis: Treatment With Nutritional and Botanical Interventions http://www.naturopathydigest.com/archives/2006/jun/vasquez.php




    Key Links


    Alex Vasquez, D.C., N.D.
    http://www.academia.edu/3862817/Nut...etal_Inflammation_and_Chronic_Health_Problems
    The 4R Gut Healing Program
    http://eastwesthealing.com/the-4r-gut-healing-program/
    Reverse-Mitochondrial-Damage-101
    http://forums.phoenixrising.me/index.php?threads/reverse-mitochondrial-damage-101.28175/
    Active B12 therapy and methylation FAQ
    http://howirecovered.com/active-b12-therapy-faq/
    Foods high in sulfur (thiols) / Perfect Health Diet
    http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list
    The low histamine chef diet
    http://thelowhistaminechef.com/

    The PST sulfation pathway
    http://www.blants.com.au/autism.html
    What You Should Know – Facts About Methylation, Sulfation and Oxidative Stress http://blogs.kirkmanlabs.com/blog/2...t-methylation-sulfation-and-oxidative-stress/
    CFS-and-impaired-sulphur-metabolism
    http://forums.phoenixrising.me/index.php?threads/cfs-and-impaired-sulphur-metabolism.2930/



    Multivitamin

    I have found a hypoallergenic multivitamin supplement with active B's in a low enough dose that should not cause a problem. Encapsulations, O.N.E Multivitamin http://www.iherb.com/Pure-Encapsula...min-With-Metafolin-L-5-MTHF-60-Capsules/52461%





    4 Common Betaine HCl Mistakes

    http://scdlifestyle.com/2013/10/4-common-betaine-hcl-mistakes/



    Disclaimer
    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 and dietary needs. It is intended for educational and informational purposes only. You should not rely upon any information found on this thread to determine dietary changes, a medical diagnosis or course of treatment. Readers should perform their own research and make decisions in partnership with their own health care providers.
    Last edited: Mar 16, 2014
    Helen likes this.
  8. Aerose91

    Aerose91 Senior Member

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    I cant believe no one has commented on this, its a wealth of great info, thank you.

    A few diet questions tho- ive always eaten very well but obviously my gut is out of whack. My base food is home made bone broth, himilayan pink salt and home made coconut kefir. How did you figure out which fermented foods to eat, and moreso, how do you know when your gut is healed well enough to take it to the next step? I feel like theres something wrong here that prevents our gut from being able to heal.
  9. Radio

    Radio *****

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    Hey Aerose,

    We need to test and treat the core problems first, before the gut can heal and fermented foods can have the most beneficial effect.

    1. Eradicate and inhibit H-pylori infection

    2. Dysbiosis Protocol

    3. Hypochlorhydria (HCL insufficiency) Digestive Aid Support

    4. Liver Detoxification Support



    See more about H-pylori info at,
    http://www.mygutsy.com/is-h-pylori-...sorders-adrenal-fatigue/#sthash.1KzwEYym.dpuf
    Dysbiosis and Multifocal Dysbiosis: Treatment With Nutritional and Botanical Interventions http://www.naturopathydigest.com/archives/2006/jun/vasquez.php

    H2S, Fiber and the Gut

    https://groups.google.com/forum/#!topic/sci.life-extension/GVFPy8jiC8E
    Rethinking-Probiotics
    http://forums.phoenixrising.me/index.php?threads/rethinking-probiotics.24643/
    Resistant starch
    http://en.wikipedia.org/wiki/Resistant_starch
    The Resistant Starch Challenge
    http://forums.phoenixrising.me/inde...ge-is-it-the-key-weve-been-looking-for.26976/

    Find A Functional Medicine Practitioner
    https://www.functionalmedicine.org/practitioner_search.aspx?id=117
    Last edited: Mar 16, 2014
    taniaaust1 likes this.
  10. Radio

    Radio *****

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    Dysbiosis Links and Research


    Bacterial, Fungal & Parasitic Overgrowth

    http://www.medicalinsider.com/bacterial.html

    Increased D-Lactic Acid Intestinal Bacteriain Patients with Chronic Fatigue Syndrome

    http://www.cfids-cab.org/rc/Sheedy.pdf

    d-Lactate in Human and Ruminant Metabolism
    http://jn.nutrition.org/content/135/7/1619.full

    Hydrogen sulfide theory and gut dysbiosis:
    http://phoenixrising.me/wp-content/uploads/H2S1.pdf



    Great Book: Fibromyalgia in a Nutshell: A Safe and Effective Functional Medicine Strategy.


    A complex condition deciphered based on published (and often overlooked) research—the hope for cure for millions of people who have suffered far too long! Summarizing research presented in Europe in March 2012, "Fibromyalgia in a Nutshell" is an updated excerpt from two of Dr Vasquez's recent books for doctors: "Migraine Headaches, Hypothyroidism, and Fibromyalgia" and "Integrative Orthopedics—Third Edition." This edition of the information has been completely reviewed and revised for easier reading by the general public; doctors and patients alike will find this information clinically accurate as well as therapeutically applicable for daily use.






    You can find this book at Amazon.com...:thumbsup:
    Fibromyalgia in a Nutshell: A Safe and Effective Functional Medicine Strategy
    Last edited: Mar 16, 2014
  11. Aerose91

    Aerose91 Senior Member

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    Thanks for all these links.

    What im struggling with is that ive been doing basically all of this for years before even getting M.E., i dont really know what more i can do.

    I havent had extensive tests done in these per se, but i have had my digestion of nutrients checked and my protein was horrible. I was already taking HCL but im increasing it now to compensate. im holding some hope that the increased HCL will provide some benefit. I do have an.integrative doctor im working with (on top of having an ME doctor) to try and nail down the odd things so maybe some more tests are needed.
  12. xrunner

    xrunner Senior Member

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    Regarding the gut and the next step, here's a possibility. I never had particular problems with my gut except in the first few weeks of my illness, but my mum had for years despite trying many treatments and remedies. What worked for her was systematic treatment for harmful bacteria, viruses and parasites, this in spite of negative tests.
  13. Aerose91

    Aerose91 Senior Member

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    What did those treatments involve? I just had a candida test but thats it, if it comes back positive i will start treatment
  14. Martial

    Martial Senior Member

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    Ventura, CA
    Great article! It covers all the necessary big steps for the most fundamental healing, this should be a huge part of everyone's recovery process for sure!
  15. xrunner

    xrunner Senior Member

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    goldenseal plus cryptolepsis, kib 500, ivermectin (not at the same time) and cat's claw whilst in parallel drinking regularly green tea with honey (pubmed has references on the action of these two on microbes and fungi)
    Radio likes this.
  16. Aerose91

    Aerose91 Senior Member

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    So the past two days ive been upping my HCL to find the correct dosage. im up to 5 pills/meal with no stomach problems or aches yet. However, the past two days my sleep has been terrible- tossing and turning all night, never sleeping more than 20 minutes at a clip, increased psychosis (im ususally flirting with psychosis 24/7 anyway but this dropped me right back into it, especially at night) and much, much increased brain fog.

    Can this be a methylation thing? What could cause that? Im going to cut back on the HCL to 2/meal for a couple days though and see if it helps.
  17. Radio

    Radio *****

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    Yes, HCL Betaine is a methyl donor. It's possible you could have the COMT +/+ problem?

    I feel we need to treat H-pylori / Dysbiosis first and address diet before high dose HCL therapy can have the most therapeutic value.

    Also, some people use bitters or lemon juice or even apple cider vinegar for digestive support. If lemon juice is used, it's important to use a drinking straw and to flush the teeth with water.


    Last edited: Mar 13, 2014
  18. Aerose91

    Aerose91 Senior Member

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    Im not sure what the problem may be, ive never had a genetic test but my doctor may do it.

    I already do the apple cider vinaegar and lemon juice to aid in digestion, im really not sure what more i can be doing to help dysbiosis since ive been basically on GAPS and paleo for several years now.
  19. Radio

    Radio *****

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    Take a look at these protocol....

    Last edited: Mar 15, 2014
  20. Aerose91

    Aerose91 Senior Member

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