1. Patients launch $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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Doesn't it have to be the Gut?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Red04, Jan 14, 2014.

  1. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    My wife had all the classic ME/CFS symptoms, depression, anxiety. Freddds' protocol improved her symptoms in 2 months to about 90% health. Initially, she could go 3-4 days without supplements before the CFS symptoms started to return.

    Currently (after 3 years of the protocol), she can go about 2-3 weeks without supplements before symptoms return. There are a lot of factors here like diet, stress, etc.... But, it has me thinking that it all has to do with the gut.

    The root cause has always bothered me. And from a healing standpoint, it really doesn't matter. The protocols seem to bypass the "root cause". She had anxiety, depression and a weak immune system all of her life, but her debilitating symptoms started with GI issues and the more I think about how this all works, I always come back to the gut.

    I think there are three probable candidates for a root cause.
    1. Detox Mechanisms (glutathione production, methylation, etc..)
    2. Immune System
    3. Digestive System (gut)

    It would seem that:

    1. A poor functioning gut could cause a weak immune system and vitamins would override that
    2. A poor functioning gut could cause a breakdown in your ability to detox and vitamins would override that.

    It would seem less likely that

    1. A poor functioning detox system would trigger poor digestion.
    2. A poor functioning immune system would trigger poor digestion. Antibiotics should kill the infections, and return digestion to normal, they don't.

    Indicators:

    1. Celiac patients have the same symptom set and this seems to be a straightforward causal relationship.
    2. Folic acid will crash the whole system in a few hours.
    3. Even when methylation is going (methylfolate, Adb12, Mb12, LCF), my wife still needs basic vitamins (A, C, Calium, Mag, Zinc) to keep her immune system going.
    4. People with a burdened immune system from infection dont run into digestion problems.
    5. Once infections are under control, the digestive system should go back to work in ME/CFS.
     
    yukito, Lou, Shellbell and 2 others like this.
  2. globalpilot

    globalpilot Senior Member

    Messages:
    594
    Likes:
    214
    Ontario
    Your point #4 is exactly whta I've been thinking about today, specifically in terms of Montanyas patients that do get well or improve - they don't have the gut symptoms I have.

    So, yes, for some of us, it could be the gut and only the gut. I think it is for me. Time will tell.
     
    Star-Anise, Shellbell and Beyond like this.
  3. WoolPippi

    WoolPippi Senior Member

    Messages:
    185
    Likes:
    357
    Netherlands
    The gut is where healing starts, I feel.

    It's not where my illness began, I think. With me it was a cellular overburden with toxins, metals and general cell debris. Caused by DNA make-up and Central Nervous System instructions as a new born. So I'm marking myself up for #1 in the root causes you mention.

    Digestion was the last functionality to go in my body. And then I was ill, system wide, full blown.
    Healing began with the gut, though.

    It positively makes me happy when I have a rest and hear my tummy begin to gurgle. Rest & Digest, baby!

    I think you think and write very clear and I am thankful for the white spaces you insert.
     
    Star-Anise and Beyond like this.
  4. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    949
    Likes:
    538
    Murcia, Spain
    Just before reading this thread I was rubbing my belly, finding the usual aches in the button. For me, I have no doubt it is the gut, but also inherited pathological tendencies, dysfunctions and imbalances, particularily in the neurotransmitters, sympathetic nervous system, detox pathways and the adaptability and response to stress. The actual root cause is actually those, but what really causes illness physically speaking is an inflammed, dysbiotic gut.

    I have already isolated the triggers for my "leaky gut", a long period of intense emotional pain and stress coupled with the overuse of an aluminum antiperspirant for two years. I had "mental" problems all my life as your wife and in fact both triggers appeared in my life and had such an impact only because of these (I had to use the antiperspirant because of social phobia triggering sweating). My gut got damaged then and its been downhill from there, as every food triggers autoimmunity and inflammation. So you get malabsorption too and that explains the multiple defficiencies that show up in tests.
     
    Last edited: Jan 14, 2014
    Star-Anise likes this.
  5. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    So what's wrong with this theory in your case?

    Your digestive system can't process methylfolate and b12 (root cause) due to genetics or other causes, which leads to a breakdown in detox/methylation, which leads to cellular overburden.
     
  6. shah78

    shah78 Senior Member

    Messages:
    158
    Likes:
    97
    st pete , florida
    Why does the OP's wife go off the protocol for 3-4 days or worse yet 2-3 weeks..
    They cost almost nothing to buy,have no side effects and are easy to take. You couldn't pry my b12/9 from my hands! My wife, my kids ,my country, my RED SOX, take them! But don't mess with my B12/9!
     
    ahmo likes this.
  7. WoolPippi

    WoolPippi Senior Member

    Messages:
    185
    Likes:
    357
    Netherlands
    It's not my digestive system that's not able to process Folium Acid or B12. I have had plenty enough of both in my blood all my life.

    Which is why the doctor and I where mystified for a few years that I displayed all the symptoms of B12 shortage but had excellent blood levels. It is the body cells that cannot utilize these supplies due to mutations. (supplementing mB12 and Folinic Acid fixed that)

    I think it caused waste overload in my body, one of the causes of illness you mention.
     
    Last edited: Jan 14, 2014
  8. knackers323

    knackers323 Senior Member

    Messages:
    885
    Likes:
    177
    Hi Red

    What happened with your wife's stomach that triggered it all off?

    Has she had any gut testing?
     
  9. Freddd

    Freddd Senior Member

    Messages:
    4,582
    Likes:
    958
    Salt Lake City
    I had a terrible gut for decades and couldn't tolerate few and few foods as my illness worsened. I was sick all the time from childhood Now the thing is 100% of all these symptoms can all be traced back to either or both of two problems. One is a problem using folate for some reason, probably genetic. The other is an inability to synthesize sufficient carnitine of the correct forms for the function. This too is likely genetic. Both or either will cause deadlocks as each is part of the deadlock quartet. While the childhood symptoms may vary, as things get worse they get more similar over time and lots of variations. The universe of symptoms, current version, that are responsive to the deadlock quartet that include CFS/FMS/ME and others and several additional cofactors are the sum of the lists. People of genuinely no symptoms as children and young adults likely have some other source of causation though it could still cause the deadlock giving the same universe of symptoms.
     
  10. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    I have no idea. Probably genetics or some intolerance or allergy or maybe nothing, its just a symptom of CFS/ME which may be caused by something else. It definitely wasn't a noticeable event. Her decline was relatively slow. It just makes the most sense that it is at least close to the root cause.
     
  11. Freddd

    Freddd Senior Member

    Messages:
    4,582
    Likes:
    958
    Salt Lake City
    Hi Red,

    my lifetime gut problems were apparently caused by a lifetime of paradoxical folate deficiency as that is what gets rid of it each time the problems come back when I go into paradoxical folate deficiency. The problems got worse year by year with increases each time more folic acid was added to more foods that I ate.

    What makes you think she didn't have the same type of folate problems?
     
  12. Christopher

    Christopher Senior Member

    Messages:
    484
    Likes:
    188
    Pennsylvania
    Isn't it possible that the circulating unprocessed toxins cause damage to the gut and allow toxins free entry to the body? For example, I ate some raw onions a few days ago, and later that night my stomach started acting up and I was experiencing lots of agitation and anxiety, and my stomach still isn't stable. The onions were fine, but their digestion produced toxic byproducts that weren't being processed and were going straight into my bloodstream.

    Those toxic byproducts, if they stay in the gut, do produce damage there.


    http://forums.phoenixrising.me/inde...mmonia-and-the-nmda-receptor.1460/#post-38934
     
    Last edited: Jan 16, 2014
  13. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    I probably wasn't clear in the above post. She certainly has a folate problem. I just can't understand why the proper amount of folate/b12/LCF, still require her to take vitamin C to have a functioning immune system. And why was she able to play sports in high school and run 5K's and then once out of college she was just about bedridden. It just seems logical that the stomach causes the folate problem.

    I guess the alternate theory would be that the folate problem could have slowly damaged her stomach? and that is somewhat permanent?
     
  14. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    Yes, I guess thats possible, it just doesn't seem to fit my theory/experiences as well. I think its sage to say that there is relation between stomach-methylation/glutathione-immune system and a breakdown in the chain can all be overridden with methylation supplements to return all systems to functioning again, no matter which one is the root cause.

    So I guess I am back to thinking that folate problems could still be the singular root cause. With the thought that digestion problems could cause folate problems.

    I guess I should just quit thinking about this and have my wife conitnue to take the damn vitamins.
     
  15. Freddd

    Freddd Senior Member

    Messages:
    4,582
    Likes:
    958
    Salt Lake City
    Hi Red,

    After the lack of methylfolate damages the gut, and that is easily demonstrated over and over, all sorts of things go wrong and everything gets worse. These days even infants and young children are having all the problems at a younger age. Folic acid is in most formula. Lack of methylation means lack of naturally produced at natural quantities of glutathione. There is a chain. I have spent since 1978 tracing down the chain and named it the deadlock quartet. A lack of any one item of the 4 can cause both partial methylation and ATP block. If that chain is not broken then things work. I would suggest that the lowest definable root causes at the genetics that affect how a body uses folate AND that for us carnitine is a vitamin because most of us here can't synthesize the right kind and quantity of carnitine. We can't fix the genetics but we can now fix the effects of the genetics.

    The problem of approaching it from the effects end is that there are perhaps thousands of separate effects that have to be cchased down and each time one changes something lower down that that the effects change again. Consider my congestive heart failure. That was composed of two elements, a weakening of the heart muscle and rthe accumulation of water. I took a diuretic to control water. It did a poor job and caused electrolyte imbalances. Then when I accidently strengthened the heart with AdoCbl and LCF and it could pump strongly and when I got rid of Paradoxical folate deficiency on a 50% of the time basis, the water went way down and I started having a new set of problems from not enough water in my system. So I was able to get rid of the diuretic. I never went down the pathway of taking more and more drugs to strengthen the beat of the heart but forcing it to with drugs. Instead I took the nutrients that allowed the generation and improvement of performance of the mitochondria and muscle and also corrected the deficiency that caused the edema to happen. Incidentally I also took the vitamins that allowed my heart to return to normal getting rid of arrhythmias.

    guess I should just quit thinking about this and have my wife conitnue to take the damn vitamins

    I don't tease my heart by not taking B-complex and the deadlock quartet to teach it to work without the vitamins. I don't believe that it will work without the vitamins. I also don't believe that it will work without protein though one doesn't die right away from lack of protein. The effects of nutritional deficiencies is slow and accumulative, each damage building on earlier damages. I hope I don't have too much irreparable damage. My nervous system is damaged because the doctors and researchers all believed that CyCbl and folic acid would work just fine for everybody and that I was up in the night believing I needed the real B12s and folate. For me CyCbl and Folic acid might as well be sawdust.

    That's like the farmer who discovered that his horse was just fine with 10% sawdust added to his food and he could save some money. Each week he increased it another 10%. His horse went along just fine until one morning he came out and his horse was dead.

    Vitamins are "vital minimums" if you look at the history. Why would you choose to believe that she can get along without what has worked over and over and gets into trouble again each time she doesn't have them. Fixing the resultant damage doesn't stop it from happening over and over when the vitamins are withdrawn. She is a success story here. Why stop what keeps on working?
     
  16. Red04

    Red04 Senior Member

    Messages:
    178
    Likes:
    77
    I was never intending to stop the vitamins. Going several weeks at a time was partially an accident. With the holidays and travel over Thanksgiving and Christmas, my wife was going just fine without the protocol. Once she has gone a few weeks without, I like to see the sypmtoms come back before continuing. This does a few things. One, it reinforces the need for them. Two, it is a chance to learn about symptoms. Three, it is a chance to rebalance what she needs.

    As crazy as it sounds, my wife can hardly remember how bad she was and what the vitamins do for her. Even when she initially recovered, I could recognize improvement a lot easier than she could "feel" the changes. Plus my wife remembers her life before vitamins and when she was relatively healthy as a teen. So she is somewhat defiant of the vitamins, even after the most horrific set of symptoms and a miraculous. I think it's a little bit that she doesn't want to be dependent on them and a little bit of not wanting to dissolve the b12 under her tounge as well. When she can go without for a week and not feel bad, its hard to jump back on the protocol. This probably sounds crazy to someone suffering, it even sounds crazy to me, but it is what it is.

    What I meant by "quit thinking about this and take the damn vitamins" was that personally I should stop trying to understand the root cause and focus on the "cure". Not that I ever intended to stop them.
     
  17. newradost

    newradost

    Messages:
    84
    Likes:
    11
    Bulgaria
    I'm trying in some posts to rise your attention to the rope parasite. As it is easy to check by enemas if one has it, so there is value to give it a try.
     
  18. Violeta

    Violeta Senior Member

    Messages:
    564
    Likes:
    214
    Red, take a look at Vegas' post in the thread sulfite/sulfate problems. He suggests that using bifidobacteria helps with a lot of the issues that come up here. I am not sure if it addresses the root cause, but see what you think. I am just getting started on putting all this together in my mind, so I can't give a good summary right now, so just see what you think.

    Also, I found a blog with similar information and I can't offhand think of the name of the blogger, but he also has information about bulletproof coffee, it that helps you find it. Some other search words are histamines and Beyond Organic.

    PS: Don't stop thinking.:)
     
  19. PathogenKiller

    PathogenKiller

    Messages:
    43
    Likes:
    31
    Hippocrates said all disease begins in the gut. It is still very true today. We neglect the gut at our peril. The catch 22 is that the dysbiosis is so different for everyone that there is a framework for healing, like the 4Rs, but beyond that we are finding that basic processes like methylation and mitochondria are being effected differently based on genetics as well as what pathogens we have at play. Everyone has their own dasterdly brew made up of a pool of "bad" guys.

    and we have to heal leaky gut.. while being exhausted and not capable of eating "perfect" financially and energywise. It takes alot out of me to make every damn thing I put in my mouth. I do it and Im lucky to have the time and money to be able to.

    It's a fight to get well. I do think that the best investment any of us can make is in our food choices and healing our guts. Supplements are a blessing and Im glad to have the ability to use them to speed up the already long healing process.
     
    MeSci likes this.
  20. Violeta

    Violeta Senior Member

    Messages:
    564
    Likes:
    214
    I should have added that the importance of the liver in digestion and health of the intestinal tract is usually not taken into consideration.

    The condition of the liver has a lot to do with methylation, too. Chris Masterjohn has several articles about the liver, it's role in methylation, and what can help or harm the condition.
     

See more popular forum discussions.

Share This Page