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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Cured Myself After 4 Years of CFS

Discussion in 'General Treatment' started by xks201, May 27, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Yes, fatigue is a rather minor part of my symptoms. Maybe people with other problems get diagnosed with CFS by doctors using the Oxford or CDC definition, but I don't think that's likely to happen with the CCC or ICC definitions.

    My big problems are PEM and OI. I don't really give a damn about fatigue, whatever that is. That might explain why I get a little cranky when ME/CFS is referred to "fatigue" or "chronic fatigue". I don't have those - I have ME.
    ahimsa likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree, i would maybe call it feeling a sick/lethargy type feeling then fatigue which is worsened by activity causing PEM.
  3. tiredlight

    tiredlight

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    I did, but only the catecholamines (only blood test): adrenalin and dopamin were fine, noradrenaline a bit too high (20%). No ground breaking results unfortunately.
  4. Googsta

    Googsta Doing Well

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    Xks, I am trying really hard to give you the benefit of the doubt but you seem to only answer questions that suit you :confused:

    Perhaps we would all understand better if you shared some info about yourself e.g
    - How you became sick
    - Symptoms
    - How you were diagnosed & what with
  5. kurt

    kurt Senior Member

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    I think you are on the right track, at least with the angiotensin focus. Most CFS patients have the ACE deletion SNP, so this is not surprising. My own experiments with self-treatment have showed me there is merit to this approach, getting the blood vessels to relax appears important in improvements to CFS. I suspect the low blood volume we experience is related.

    But SBOs, you must be joking. Did you read Jordan Rubin's book? His experience was with one type of SBO then he sells another type as the cure, I've read plenty of complaints about his approach, but who knows maybe that helped you. Did you do something different from what Rubin recommends? Anyway, I don't know any CFS patients who have dramatically improved from using SBOs, some get worse. I've tried them in all types of combinations with little help.

    xks201, I believe everyone has the right to share information however they like, including writing books and selling them, etc. But you can count on a lot of resistance if you make unsubstantiated claims, and I think what is happening here is that we are a burned-over district of people, have been given 'cure' sales pitch a few too many times. You appear to have discovered something that helps you, that's great. Maybe it can help a few others, that would also be great. We have several sections of this forum where patients discuss treatments that have helped them recover, particularly Fred and also Rich VanK, a private researcher. You could do the same. While you might make a little money from an ebook, that is nothing compared to what you could earn if you actually earned an MD and solved CFS. And participating on the forum, helping CFS patients, would be a good start towards a medical career as a CFS specialist some day.

    Just saying. I hope your improvement persists. I too have recovered once, for about a year, then the relapse was the worst I had been yet. This is a cyclical disease, with chronic infections and immune and neurological disturbances in some type of cycle. If your self-treatment keeps you well through the stress of med school, and if it works for other CFS patients, then I think you may have something. But until you have passed the 'test of time' I think forum members here are quite right to be skeptical.
    taniaaust1 and Googsta like this.
  6. helios

    helios

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    I remember reading about this guy and his story and the turn around in his health was very impressive, which he attributed to SBO probiotics. But I didn't buy the story about a mysterious stranger who showed up when he was on death's door and gave him a bag of SBO which saved his life and showed him all about it so he could go on and become a millionaire from it, combined with the way he was tying in the bible/christianity to his marketing. SBO probiotics are not sold in my country which is why I have not tried them, but also because I have not read of many CFS sufferers raving about the product.
  7. taniaaust1

    taniaaust1 Senior Member

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    I didnt realise those are neurotransmittors... on this new realisation.. I have to change what I said before and say yes I have had some of those tested then. My adrenaline is very high thou I dont nowdays have anxiety.
  8. xks201

    xks201 Senior Member

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    I don't think SBOs are the entire picture. I am fairly confident that often in the case of ME there is a variable that is causing the intestinal villi to deteriorate or inflame. This could be an infection producing thiaminase (an enzyme that destroys thiamine in the body) possibly being produced by a bacteria as is seen in livestock. It could be an infection of any kind - a neurotransmitter imbalance causing gut inflammation and immune dysfunction... list goes on.

    In any event the intestinal villi problem goes hand in hand with the poor functional status of the liver in ME (poor alcohol tolerance being a great example of this). Ultimately something is impairing the nutritional status of the body in my opinion.

    And when you start getting into vitamin deficiencies from malabsorption or anti-vitamin metabolites (of which there are more than just thiaminase), entire metabolic cycles are disrupted. A thiamine deficiency for example could entirely disrupt the Krebs Cycle via interference with the pyruvate dehydrogenase complex. Lactate can also build up ... any of these is enough to greatly impair liver function.

    SBOs may be one tool in addition to orthomolecular methods of restoring nutrition to a body that has compromised absorption and or the presence of anti vitamin metabolites such as thiaminase. http://en.wikipedia.org/wiki/Thiaminase

    Infection alone by mycoplasma and unwanted bacteria is enough to disrupt the pyruvate dehydrogenase complex
    http://www.ncbi.nlm.nih.gov/pubmed/8856841
    http://www.ncbi.nlm.nih.gov/pubmed/6423397

    Gut bacteria also synthesize neurotransmitters and are capable of producing and reducing lactate.

    As I have said in past posts, I think in the future we will see an entire branch of medicine evolve that treats specific diseases and deficiencies with restoration of specific gut flora.

    So lol for a second I will pretend I was Klinghardt who likes to say "If I was a bug I would do such and such to disrupt the body's defenses and ensure my survival..."... well if I was a bug I would definitely first try to interfere with mitochondrial dependent cycles like the pyruvate dehydrogenase complex/krebs cycle and B complex status.

    I have seen great results from taking individual coenzyme forms of b vitamins in high amounts like benfotiamine. I don't get these same results when taking a multivitamin or even a coenzyme complex multivitamin. I'm not sure even science knows the state of competitive inhibition these vitamins are capable of, or the degree to which the various coenzyme and non coenzyme forms of each vitamin is capable of absorbing in a potentially already compromised intestinal villi. I think glutamine in powdered form (I take 2 spoonfulls a day - I just stick the spoon full of glutamine in my mouth and wash it down with water immediately and it dissolves) can be particularly useful considering our ancestors were eating pounds and pounds of animal flesh containing probably close to 200 grams of glutamine per day which is essential to rebuild the intestinal villi.

    Furthermore I would say that with the knowledge of thiaminase producing bacteria and potential interruptions in these metabolic cycles, supraphysiological doses of vitamins are a good bet even in spite of normal b vitamin status on a lab result.

    I know from first hand experience with cows that their intestinal villi depend on the type of gut flora they have. For example if they are switched to a grain diet from a grass diet and are not innoculated with lactic acid utilizing bacteria their intestines upon post mortem examination look like they were left in a blast furnace and the villi are totally destroyed from the lactic acid generated that otherwise could have been prevented with innoculation with lactic acid utilizing bacteria.

    How does this apply to humans... well our doctors love rxing antibiotics. And considering most people probably have pathogenic bacteria in them at any given moment, it would take only a matter of days of killing good bacteria with antibiotics for potentially bad bacteria to take hold. And then you factor in that some of the good bacteria could have been synthesizing vitamins, reducing lactate and doing all kinds of good things aside from just inhibiting pathogenic infection...and it is thus one mechanism to develop ME.

    Patients with malabsorption often have low interferon levels which could explain why viruses wreak havoc in ME patients.

    Strptomyces griseu is just one bacteria that is found everywhere, even in soil - which is capable of producing mitochondrial toxins. It is also capable of inhibiting the actions of thiamine - to which a treatment with supraphysiological doses of thiamine could potentially compensate for.
    Adlyfrost likes this.
  9. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Ok, this last post on saturday you are still talking about gut bacteria, NOT hormones.

    Now on Tuesday....you are totally cured, but by hormones now?

    Please clarify. I have never come across so many conflicting statements by one person.

    Is this entire thread a moot point now?

    You seem to making statement like you are working on some sort of paper, or thesis. Are you?

    The problem is every time you make a new statement, or theory rather, it totally negates all previous statements or theories you made.

    Fix hormones and then "add stimulants" !?!?

    Stimulants are by far one of the least tolerable medications, almost universally, by all ME patients, BTW.
    Googsta and Ai-Yai like this.
  10. Catseye

    Catseye Senior Member

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    If you already know you had gut issues, then you probably had severe dysbiosis. When you have an overgrowth of yeast and bacteria in the body, they can transform elemental mercury into methyl mercury which is about a hundred times more harmful. This is a main cause of CFS symptoms. You didn't mention anything about heavy metals. If you have mercury fillings in your teeth, you should see a chelation specialist and get properly tested because it's likely you could have mercury issues. I have fixed most of my own issues by using chelation after a lengthy leaky gut fix.
    GracieJ likes this.
  11. CAcfs

    CAcfs Senior Member

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    I dunno, I consider myself someone who only has CFS, and I use the forum. My main complaint is hypersomnia, I sleep a lot, and I feel like crap all day. But I don't have post-exertional malaise as a big feature. Should I be on a different site? (asking seriously, not sarcastically)....really, are people with just fatigue all the time not welcome, if they don't have the same mystery cause as the majority?
  12. SOC

    SOC Moderator and Senior Member

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    I think the distinction being made here is between the symptom "chronic fatigue" which can be the result of many illnesses or even something as simple as poor sleep habits and ME/CFS which is a specific illness.

    I wouldn't say other people are not welcome. However claiming to have discovered a cure for our illness if what you've treated is simply "fatigue" would be insensitive (at the very least) to this population of very, very sick people. It's rather like announcing to a group of terminal cancer patients that you've cured cancer because you figured out how not to be tired. That's what we're responding to.... not whether someone has CFS or ME or ME/CFS.
  13. CAcfs

    CAcfs Senior Member

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    But he is claiming to have "cured" himself of CFS, which is defined by symptoms and has an unknown etiology, unlike cancer. He didn't claim to cure ME/CFS. Not trying to be argumenative. I DO realize how touchy of a subject this is, and that many (most? all?) here are suffering greatly with a very serious illness.

    However, I AM interested if someone says they cured their CFS. Because I am not convinced I have ME/CFS. Sometimes I wonder if my symptoms could be due to another illness. And I am a little disappointed that that outlook is met with groans on Phoenix Rising, because we all just want to feel better. Though I have exhausted the options of other illnesses, you still never know who is falling through the cracks of modern medicine, and really has another disease they don't know about, or something that can be cured. However, what I am NOT interested in, is anyone who is selling something or stands to make any kind of profit from what they say on this site. So that is the turn-off for me. But if someone cured their fatigue and has found they really had another disease, yes, I am interested to hear it.

    Sometimes I question if I belong on this site.....like if this site is just an activism site for one group of people...At the end of the day, I think the best thing for all of us is to coexist in one place, but some might disagree.
    GracieJ, Marlène, Yungas and 2 others like this.
  14. SOC

    SOC Moderator and Senior Member

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    Well, the best thing is probably to read the whole thread and see if you think his ideas can help you. :) You might also want to read other threads he started about several other theories he has about CFS.

    I think most of us would be thrilled to have an illness other than ME/CFS, especially one that is treatable. I believe if you came here and posted that you found you have something treatable all you'd get would be congratulations. :thumbsup:
    Dainty likes this.
  15. Beyond

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

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    Hey ok I will be purchasing your book. Better if it is not a scam!! I am gonna write a book myself lol but more literature/philosophy oriented which its my field after all.

    The 50000 dollars its key here. I have only used like 3000 yet. I always knew recovering from chronic illness was a mix of luck, focus, will and money. I have had relatively good luck in the research aspect (like knowing from the start about underlying conditions and being in contact with the most straightforward networks of sick people), but not much in the money aspect, with which I would be mounted in the Healing Express. And here in Spain doctors suck, really and completely. But I will get there.
    Adlyfrost likes this.
  16. Beyond

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

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    Oh yeah and I agree with people, I would give for free the key supplements or protocol for recovering to SAVE lifes. Those that cure and open a website or some other greedy business out of illness havent learned anything from the suffering we have undertaken with doctors, healers and all that people making money from the sick (because simply put thats what they do, and usually dont bring real healing even) Like that annoying woman of leakygutcure. Damn.

    And THEN I would write and release my book with more specific tips and my personal journey.

    Nonetheless you seem to know something and I will read your book if you release it at the end.
  17. Dainty

    Dainty Senior Member

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    What a thread.

    Some of you may have been following my fairly recent recovery story in progress, after being bedridden/roombound by textbook CCC and ICC definition ME/CFS (as my caregiver put it, "she fits the criteria about five times over") with severe fatigue and PENE (formerly known as PEM) as my most debilitating symptom by far.

    What has become personally very apparent to me is that the "fatigue" of ME/CFS is really, really, really not fatigue. Nowadays, I experience fatigue. More fatigue than a healthy person. If I overdo, I experience lots of fatigue. But it is relieved by rest. I'm feeling tired, I lay down, the tiredness melts away within seconds and I rest. Sure, if I get up before I've rested enough I still feel horribly tired. But I can just lay back down again and the tiredness magically disappears again.

    The first time it happened, I couldn't believe it. It felt like a miracle to me. I was elated. So this is how it's supposed to work! How wonderful!!!

    It didn't matter to me that the moment I got out of bed I felt horrendous and confused. I could lay down, and it all disappeared, and I was totally at ease.

    PENE is just about the worst nightmare I could imagine - I take that back, it's worse than I can imagine. Every time. No matter how many times it happened I never felt mentally prepared for it. You're exhausted on a neurological level and not just a physical level, and resting does not relieve it. You lay down, and you may as well still be upright for all the good it does. Your body is screaming for rest, and yet, even when resting, that necessary restorative rest does not happen so it continues to scream. And scream. How many hours have gone by now? Nothing to do but wait it out. On and on it goes. I'm telling you, there were times it was so bad I couldn't have told you which direction was up or down, jsut because my brain wouldn't have been capable of registering the concept.

    And to have a level of neurological exhaustion, unrelieved by rest, all the time. That is NOT fatigue. Most of what I experience now is, as far as I can tell, "normal" fatigue. It's a cake walk compared to the unrelenting mire of the ME/CFS "fatigue" that I lived with for 10 years (3 1/2 mild, then a summer of remission, then 6 1/2 severe). Healthy people cannot imagine the "fatigue" in ME/CFS. Normal fatigue is easy. You just rest and then are at ease. Oh, how I wish I could gift everyone here with experiencing that luxury, if only even for a day!

    There is a very big difference between "chronic fatigue" and ME/CFS. It isn't simply a difference in terms, it's a difference in realities. And extremely large difference in realities. Honestly, it's difficult for me to see how you can get the terms mixed up if you've experienced ME/CFS and then were restored to health. :confused:
    GracieJ and Wayne like this.
  18. Jarod

    Jarod Senior Member

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    Hey XKS. Good luck on your book. We need all the people studying this disease we an get! especially if you were sick and now are recovered. Sounds like you are ambitious enough to make a difference. :thumbsup:

    You can probably get all sorts of input an ideas here at no charge to boot. :balloons:
    Adlyfrost likes this.
  19. Jarod

    Jarod Senior Member

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    I agree about the fatigue and how it may be better described as neurological exhaustion. I think of it as dysfunctional heme function(in my case). Studying pyphoria seemed to best explain the symptoms I get from what some may call "fatigue".
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    The mitochondria have to be addressed with fatigue. The very core.

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