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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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CURED CFS/ME? PLEASE SHARE YOUR STORY HERE.

Discussion in 'General Treatment' started by richard86, Dec 8, 2013.

  1. Graeme

    Graeme almost there...

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    TPN is Total Parenteral Nutrition; nil by mouth, intravenous feeding. It occurred to me that three people who recovered all had this as part of their treatment. I theorize that the act of eating can trigger an immune response that perpetuates ME/CFS. Take away this reaction and your body can fight off the primary infection and reboot, or something like that.

    Now bear in mind that LPS entering the bloodstream can produce Shoemaker's CIRS just as easily as mold toxins using the exact same innate immune mechanisms. Cheney said in his most recent talk that mold illness and ME/CFS are indistinguishable. It's too bad he didn't expound because I think the significance of this statement is lost on most. Mold/biotoxin illness can produce: orthostatic intolerance, chemical sensitivities, glutamate/GABA imbalances, PEM, etc, etc...

    Shoemaker bristles at the term fibromyalgia. He clearly believes this is biotoxin illness. And our 'cardinal' symptom of PEM, this is also present in many cases of mold illness. It usually resolves with sufficient avoidance and treatment.

    Since mold illness is pretty well understood, shouldn't we suspect the same mechanisms are at play in ME/CFS? Don't we understand through Shoemaker a lot more about our disease than we thought we did? C4a is the only real change in post-exertional testing amongst our population so far. This fits right into Shoemaker's science. How our community is not jumping all over this, I really don't understand.
    taniaaust1, S.A., SOC and 1 other person like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Leaky gut theories are based partly on the concept of the wrong diet causing excessive gut permeability and thus causing/perpetuating autoimmunity, and these diets do seem to have evidence of efficacy. Some refer to the gut dysbiosis caused by the wrong diet allowing LPS to cause damage.

    I guess you mean that C4A is the only documented change in post-exertional testing, but even this surprises me. Have no others been recorded by any researchers?
  3. Radio

    Radio *****

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    I was sick for over a year with (CFS). I've had Fibromaygia for over (10 years). It took me about 8 weeks for me to recover from CFS ...These are the vitamins that worked for me...NT factor, NADH and Fredds B12 protocol. I was in bad shape, I could not get out of bed and now I'm back to work.

    http://forums.phoenixrising.me/index.php...
    Last edited: Jan 5, 2014
    taniaaust1 and catly like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    How long have you been well from CFS?
  5. catly

    catly Senior Member

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    Hi Radio, thanks for posting on your success, I hope you continue to feel well.

    If you don't mind, can I ask how much of the deadlock quartet and NADH and NT factor are you taking? I'm working on Fredd's protocol now for about a month and am wondering how far to go with the metafolan and B12s. It helps to understand how much those who have had success take on a daily basis. Also, when did you add the NADH and NT factor to your regimen?
  6. Radio

    Radio *****

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    Hi Catly,
    I've try many things over the years, I feel that having the right diet in place is the first critical step, before methylation support can have the most dramatic effect. Amy Yasko and Fredds protocol really got me on the road to healing and you really need to ask Fredd about the right Metafolin/B12 support. Repairing the Mitochondria is the next step, This is the protocol that healed my CFS...

    Simplified Methylation Recovery Protocol
    Enzymatic Therapy Infusion B12 Methylcobalamin 1,000mg 2-3xday
    Seeking Health Adeno B12 3,000mcg lozenge 1/2-1xday
    Nature Made, B-Complex with Vitamin C 1xday
    Solgar 400mcg Metafolin 1-2xday.
    Nature's Bounty, Potassium Gluconate 595mg 1-3xday
    Jarrow carntine 600 2xday
    NT Factor (Nutri cology Nt factor) powder 2xday (2-4 months only)
    Now foods super enzymes take with NT Factor 2xday
    Now foods, CoQ 10 ubiquinol 100mg 1xday
    Now Foods Biotin 5000mcg 1xday
    Pure encapsulations Mineral 650 1xday
    Douglas Lab Riboflavin-5-phosphate 1xday
    Now Foods Vitamin D-3 5,000iu 1-2xday
    N ( R ) Niagen Nicotinamide Riboside 1-2xday (NAD+ deficiency Bypass)
    The alternative to this is, Source Natural NAD B-3 1xday or Now foods Nicotinamide 500mg 3-4xday (Makes NAD+ to NADH).

    Methylation Recovery Protocol
    1,000-5,000 B12 Methylcobalamin, 1,000-5,000 B12 Adenosylcobalamin 1-2xday. (Bypass MTR, MTRR, Lower the dose if you are COMT +/+)
    Nature Made, B-Complex with Vitamin C 1xday
    Solgar 400mcg Metafolin 1-3xday.
    Nature's Bounty, Potassium Gluconate 595mg 1-3xday
    Jarrow carntine 600 2xday
    Jarrow Formulas , Borage GLA oil 1-2xday (Great Anti-inflammatory, bypass the Delta(6)-desaturase gene-defect)
    Now foods, CoQ 10 ubiquinol 100mg 1xday
    Now foods Magnesium citrate 200mg 2-3xday
    Now Foods Biotin 5000mcg 1xday (Repairs nerves and helps make key amino acids)
    Now Foods Vitamin D-3 5,000iu 1-2xday
    Pure encapsulations Mineral 650 1xday (Minerals make B-Vitamins active)
    Douglas Lab Riboflavin-5-phosphate 1xday (MAO Bypass)
    Seeking Health Probiota Maximum Support Dairy-free probiotic 50 Billion CFU's (Best Mast-cell probiotic, Help make B vitamins)
    Twinlab, Allerg-C 1-2xday (Best mast-cell, highest quality vitamin C obtainable)
    Source Naturals R-Lipoic Acid 50mg 2xday (NADH to NAD+ Recycling)
    N ( R ) Niagen Nicotinamide Riboside 1-2xday (NAD+ deficiency Bypass)
    The alternative to this is, Source Natural NAD B-3 1xday or Now foods Nicotinamide 500mg 3-4xday (Makes NAD+ to NADH).

    (Limit Vitamin B-6)
    <-- Over-drives CBS Pathway and prevents neuropathy and nerve demyelination from healing, Pyridoxal-5-Phosphate is not water soluble and will build up in the body damaging the peripheral nervous system.

    The first critical steps to healing the mitochondria is to eating a super clean diet. The key is to give the methylation cycle a break and eat the right anti-inflammatory foods with the least amount of metabolic waste. (low animal protein foods) Also, i wanted to add that digestive support is recommended when supplementing with NT factor.

    Phospholipids replacement therapy
    NT Factor is a blend of phospholipids and glycolipids whose mechanism of action is to repair cellular membranes by increasing cell membrane fluidity. By repairing the membranes of the mitochondria , we allow our cells to increase their nutrient uptake so that the mitochondria may product more ATP. Look for the NT factor with phospholipids (only) with "NO" add supplements. It has to be just plan NT Factor.


    Modified Paleo Anti-inflammatory Diet (MPAD)
    What can you eat (?) You can have 3-4oz meat 2xday, Wild fish from frozen, free range chicken, eggs, pork, steak, Veggie stir-fry, salads and some non-enriched rice. Yes you can have rice on a (MPAD). Sweet potatoes are good source carbohydrate and eating fish two or more days a week is highly recommended. Add in some paleo friendly fats as well... Limit nightshade veggies. Add in pea's, green beans, carrots, kale and some sulfur rich vegetables. (If you have a CBS problem limit sulfur foods) NO processed meat, NO nitrites, NO MSG (code word seasoning) NO enriched fake foods, breads, sugar...You can eat some nuts and seeds a few days a-week, Pecans are a good clean source of protein. Limit fruit consumption to melons and berries only. The low histamine chef diet has some great information on other anti-inflammatory foods and recipes you can customize.

    Phospholipids Sources
    Egg yolks, liver, wheat germ and peanuts contain the phospholipid lecithin. Your body can only synthesize lecithin if you have sufficient choline in your diet, however. You can also find phospholipids in soy, milk and lightly cooked meats. Most fats, oils and fat-containing foods contain phospholipids as well.

    http://forums.phoenixrising.me/index.php?threads/nt-factor-healed-my-cfs.27280/

    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.
    Any statements or claims about the possible health benefits obtained from any foods or supplements mentioned on this thread have not been evaluated by the Food & Drug Administration and are not intended to diagnose, treat, cure or prevent any disease.
    The Recovery Protocol in the thread are not acting in the capacity of a doctor, licensed dietician, licensed nutritionist, psychologist or other licensed or registered professional. This thread is for educational purposes only to document that recovery is possible.
    Last edited: Jan 6, 2014
  7. Radio

    Radio *****

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    I've been been fully recovered from CFS for over 6 months. Im at this point...If i continue to eat a super clean diet and take the active B's, NAD+, Metafolin, pure Minnerals, vitamin D and add some digestive aide support, Im good to go.... NT factor is just needed to heal the mitochondria, after that all we need to do is eat some eggs and fish to keep the fatty lipids in the cells. I still have some muscle soreness in my back that (Adenosylcobalamin B12) will heal in time. It's all about keeping the metabolic waste under control. Intermittent fasting is another great approach for keeping the toxic build up under control.
    Last edited: Jan 3, 2014
  8. catly

    catly Senior Member

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    outside of NYC
    Radio,Thanks for posting your protocol with rationale. My new years resolution is to "clean up" my diet, the low histamine chef's diet looks interesting, I've been looking into various forms of paleo, wahls, SCD etc.
  9. Radio

    Radio *****

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    I wish (closing my eyes) We all find the good health and peace in this new year. Cheers $( )*( )$
    The Wahls diet is great, but can be problematic if you have a CBS upregulation. The Wahls diet also disregards the oxalate content in foods like spinach that can damage the kidneys.
    Last edited: Jan 5, 2014
    RosieBee and catly like this.
  10. howirecovered

    howirecovered Senior Member

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    Hi Richard, though not specifically focused on CFS, I keep a collection of recovery stories here:
    http://howirecovered.com/category/success-stories/

    Most of these people also suffered from fatigue.

    Radio, if you are reading this, would you like to contribute your story?
  11. Radio

    Radio *****

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    Yeah, I can do that.... ask me in a few weeks, I'm working out my Autobiography now.
    howirecovered likes this.
  12. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX

    What age group are we calling "kids"?
  13. joshi81

    joshi81 Senior Member

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    @Radio hi Radio when you tell to take digestive enzymes with NTFactor why you suggest it? and in your opinion being NT factor lipids should i take lipase?
    Thanks
  14. Radio

    Radio *****

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    I supplement with Now Super Enzymes to help improve the digestion and absorption of the phospholipids.
  15. Radio

    Radio *****

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    MY STORY
    I live in Upstate New York where the winters are harsh and the seasons are colorful. Overall it is a great place to live, work, and raise a family. 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 started studying nutrition and reading books that were health related. 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 functional medicine. I started with the four gut healing protocol program and supplemented the B12 deficiency. I was feeling better. I started following a Paleo diet regimen. However, I was still experiencing fibromyalgia symptom. Boom, I crashed! I had a severe allergic reaction to a pharmaceutical drug used for controlling inflammation. I was 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 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 methylation protocol. I started feeling better. In eight weeks, combined with my anti-inflammatory diet, I regained my energy and fully recovered from chronic fatigue. I hope my story can inspire others to see that recovery is possible.

    http://forums.phoenixrising.me/index.php?threads/how-i-recovered-from-cfs.27280/
    Last edited: Jan 5, 2014
    taniaaust1 likes this.
  16. joshi81

    joshi81 Senior Member

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    it's the END that each one of us would like to have for his story.. i'm happy for you,really. The point is here we have similar symptoms but in my opinion very different causes. Also when we say pain there are so many different tipes of pain, as also different kind of "fatigue" or sense of weakness. it all depends on the cause also if then we generally say "pain" or "i'm tired"
    Anyway your path is similar to mine, i too started studing about food i brought so many books, raw foddism, paleo, juicing, poerfect health diet, wahls diet and so on... at the moment i'm PHD (perfect health diet) caus i found i cannot thrive on a pure paleo diet. Form my kind og body i need a little bit of carbs (wiche i take from rice, potatoes banans and other fruit). I do juice (vegetables) also.
    The main concern is the story of CBS, i'm CBS hetero (and mthfr 1298 hetero) and i am a little bit concerned about meat and sulfur vegetables which i eat every day (also because the sulfur vegetables and the nichtshade vegetables are also the most rich in nutrient if compared with salad..).
    Anyway at the moment i'm waitin for 23and me results and a MAP (metabolic analysis profile) test to see what's going on. The paln is to start a methylation therapy (also if i'm a bit concerned about my low homocisteine 4.8 and i'm scared that a methylation protocol could bring that down further) and i also want to try NT factor becaus ein my CDSA i had low phospholipids.
    I too am taking digestive enzymes to improve my absorbption.
    Thank for sharing your story i often read and re read about your protocol.
    Radio likes this.
  17. Radio

    Radio *****

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    The main concern is the story of CBS, i'm CBS hetero (and mthfr 1298 hetero) and i am a little bit concerned about meat and sulfur vegetables which i eat every day.

    Yes, I eat the Low Protein Paleo Anti-inflammatory Diet. I also include non-enriched rice. It keep me out of ketosis. I feel that rice is a very safe food. The CBS problem was a factor for me as well. The key is to limit any supplement that contains vitamin B-6 as well as sulfur foods until you have balanced the system. Sulfur is needed for phase 1-2 detoxification pathways. Also, check out these sulfite test strips. They really help me in customizing my diet.

    http://www.amazon.com/SEOH-Indicator-Sulfite-Quantofix-Analytical/dp/B0089PPEGI/ref=sr_1_2?ie=UTF8&qid=1388963468&sr=8-2&keywords=sulfate test strips
    Last edited: Jan 5, 2014
    RosieBee likes this.
  18. ukme

    ukme Senior Member

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    I know my story is not going to go down well but here goes..

    My daughter got this (whatever it is) aged 11. We tried lots of things and visited lots of specialists over the years. You can see all my previous posts to get a picture. There was gradual improvement but the fatigue and feeling unwell remained. In 2012 after two local people I had been in touch with had some success with the LP, we decided to see the same practitioner. To be fair it was all very open and there was none of the secrecy thing people have spoken of but I did sit in on it and I did think well this is never going to work if thats all there is to it. But either my daughter subsequently made a natural recovery unrelated to the LP or the LP had an effect and caused her gradual recovery. However there are still some morning fatigue issues, although minor. I would put her recovery at v close to 100% but we are not complacent and she makes sure she never overdoes things. We are not sure that this thing is ever going to completely disappear. But she is 18 next month and I feel pretty confident she will get to university in September and with care get through a 4yr degree course.
    .
    I have not been on PR for some time and so would like to use this opportunity to thank everyone who has ever given me help and advice. I have had some very dark days and PR has always been a place of immense comfort. I wish everyone on here the very very best .
    Snowdrop and taniaaust1 like this.
  19. taniaaust1

    taniaaust1 Senior Member

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    thanks.. that was great to read of someone who had the right info to know what kinds of things to be trying and did this early in their CFS and is now back at work.

    Its something Ive been thinking all along, that if people can start trialing some of the helpful for many with ME supplements which try to actually correct things at the beginning of the illness.. we may see many more recoveries. (I personally think when left, things end up becoming more complex and far harder to fix).

    Unfortunately most new to this illness doesnt start trialing the most likely helpful things until they are a couple of years into the illness.
    Little Bluestem and MeSci like this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm very glad that your daughter has recovered so well, if not completely. She could well have done this spontaneously - I understand that spontaneous recovery is relatively common in children.

    Morning fatigue is common in teenagers; indeed, there are moves in some educational establishments to start the school day later to accommodate this and thus improve student performance - e.g. see this article. (8.30 is still much too early for some though, including me!)

    Of course, ME may well exacerbate this further.

    Thank you for your good wishes. I hope that your daughter continues to improve and has a great time at uni.

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