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Cured Myself After 4 Years of CFS

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

  1. xks201

    xks201 Senior Member

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    Between doctors and supplements I bet I've spent over $50,000 trying to cure this. I'm gonna write an ebook on it I think. This disease has taken 4 years of my life from me. Let me just say that it is more complex than just lactic acid bacteria overgrowth. Though for me that was definitely an element. I'll outline the problems right here. I want to say that there are probably 100 ways to induce CFS, yet in most cases all of these elements are present.

    1) Abnormal High Calcium Ion Currents In the Body as seen in Autism (Causes the Hyperactive wired but tired feeling) http://www.ncbi.nlm.nih.gov/pubmed/7968720
    2) Abnormal Gut Flora and Gut Inflammation (Possibly High Amounts of Lactic Acid Producing Bacteria) If you look at cows fed a high grain diet with mostly lactic acid producing bacteria in them their intestines get charred(literally looks like they have been burned by the lactic acid generated from the bacteria fermenting the grains) and their intestinal villi get destroyed.
    http://www.ncbi.nlm.nih.gov/pubmed/22281935
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/
    3) Low DHEA, Testosterone, or Other hormones like Cortisol and Aldosterone and Pregnenolone (Any possibility of Low Hormones is Possible so you must have them all checked.For men at least I recommend 100mg of DHEA per day and 200mg per day on exercise days. Friend has done labs and 300mg a day puts him in the top lab range so the only way to tell is to test your levels after supplementation.
    4) The Brain's Reward Center is Malfunctioning from Toxin Exposure and or Depressed from Sickness. The only way yet again to fix this is with a specific nootropic substance that has all the effects of say a prescription ADHD stimulant but none of the associated side effects. This may naturally heal itself but I'm not sure without the supplement.
    http://www.sciencedaily.com/releases/2012/04/120424142109.htm
    5) Serotonin Dysfunction

    It is funny because in chinese medicine, fatigue is damaging to the digestive system. This disease is a vicious circle. As long as the top problems persist, there will not be a cure. Many of you don't believe there is a cure. Well, considering I was once normal I refuse to believe that. Everyone gets exposed to viruses and pathogens. Not everyone gets chronic fatigue. Therefore something must be causing the chronic fatigue.

    I am writing the ebook now and 100% of it is backed by scientific studies off pubmed. This is the core of the healing, though I will not mention any specific supplements in this thread that ARE necessary to fix the problem 1,2, and 3.
     
  2. Purple

    Purple Bundle of purpliness

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    This forum is for people who suffer with a disease called Myalgic Encephalomyelitis. 'Chronic fatigue' is not it.
     
    Min, self and Googsta like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    TheMoonisBlue made good points. I would also underscore the point about removing the part of your post about contacting you to buy the book you are writing. Advertising is against the forum rules. If you have helpful information to share, it is in the spirit of the forum to share it openly with links to your sources--i.e. in this case the PubMed articles you mentioned.

    Sushi
     
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  4. xks201

    xks201 Senior Member

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    I did not mean to say that every one of you has every single problem I listed there. As far as hormones go, reference ranges are quite dangerous because they follow the average of the sick people getting their blood drawn in your locality. Majority are probably older people and or sick people and therefore the lower half of the reference range on hormone values is most likely a sick range. I have read other doctors say this as well.

    For example, my aldosterone level repeatedly came back 0, but my doctor said that was "in range" and it was not until I was given florinef that low aldosterone symptoms were relieved. Most people have at least some aldosterone reading at most times of the day. But that is just an aside.

    As far as writing a book...I figure I am more qualified than most of the people writing because
    a) I had chronic fatigue and fibromyalgia (diagnosed) for approximately 4 years
    b) I spent tens of thousands of dollars
    c) I am a chemical engineering student and understand how to connect principles of action within the body to come to a logical conclusion (unlike many other fibromyalgia/M.E./CFS books which simply list a blanket of treatment options, half of which have no logical correlation)

    I honestly hope you all get better. My advice is to research on pubmed these bulletpoints and the treatment for each.

    I have spent thousands of dollars getting better and I can't afford to just give it away as I am a poor college student (chem engineering) and med school next year.
     
  5. Esther12

    Esther12 Senior Member

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    Great to hear that you are feeling much better.

    There is a danger with developing theories off just one person's experiences that there will be all manner of impossible to account for coincidences and strokes of luck. It might not be worth putting your new energy in to writing a book at this point, or without there being further research... if I were better I'd want to be off dancing anyway!
     
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  6. xks201

    xks201 Senior Member

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    If anyone wants advice pm me.
     
  7. snowathlete

    snowathlete

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    Frankly if you had the same illness as me for four years you wouldn't be trying to get any cash for your cure that you are supposed to have found. You'd be giving it away and counting your lucky stars that you are healthy again and hoping that you can save other people from the same illness you yourself suffered from.

    Trying to make a fast buck out of it, when it isn't a cure anyway is just wrong. You are not qualified to say it is and an argument based on pubmed articles is not sufficient evidence to use the word cure when promoting a protocol, beyond perhaps your own individual case.

    It's insulting really to suggest that this illness as simple as your saying it is, and that if we send you some cash then we can be let into the little secret that will cure it, that you, a student (not a doctor who did proper research) worked out on his own.
     
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  8. xks201

    xks201 Senior Member

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    The fact is people have a choice whether or not they want to buy information. I am not guaranteeing my method works for everyone. If you want free everything why not just move to a communist country? I could have posted one thousand studies on CFS. I posted several relevant ones to my opinion as to what his happening in the majority of CFS cases. Clearly blue moon you would rather me have posted nothing at all. The fact is I already gave everyone here information and if they want to insist I'm such an evil person for not spending enough time to write a book and give it to you all for free I'm sorry but I have a life to live and homework to do and a job to work. Why don't you just come wash my car for free?

    As for all of these specialists, how many of them can say they actually cured a CFS patient? I know people who have spent thousands on these specialists who are just as bad as when hey started. None of them were cured that I know of except ones with a parasitic infection and even then sometimes not. And as far as I know you don't need a phd to write a book. I could be wrong though. It's a wonder all these specialists dot have us all cured isn't it?

    My motivation was to tell you all the principles that helped me. And I did that. If you are smart you may not even need any more info from me.

    If you want free supplements I can't help you there buddy. I have a mortgage like everyone else. Plus obviously all that free advice didn't fix you yet. I have gotten a lot of free advice and most of it was worthless.

    As it stands we can argue over free or not but I just want a discussion on the principles. I'm not advertising I'm offering an open discussion. I referenced some interesting studies that I think are at least worthy of discussion.
     
    ggingues likes this.
  9. alex3619

    alex3619 Senior Member

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    I have seen this kind of claim before. I reviewed (privately) a book like you are describing in the 90s, though the postulated cause was different. It suffered from logical and biochemical flaws. I too have spent that kind of money - actually much much more than you, so does that mean I am a better expert than you? That is not a rational claim. I too have an appropriate background - so what, many of us do. When I came up with my first model of CFS I released it free of charge to the world, even though that cost money (I travelled to the 1999 CFS conference in Sydney at a cost of about $2000). I gave the information away for free. I am writing a book on medico-political issues around ME, and I plan to release that for free if I ever finish.

    I have seen many who recover from CFS, but most had a limited range of symptoms. True recovery is uncommon. Claims of recovery are however very common, but for some reason I keep hearing them in relation to a commercial product. Later on its discovered the product didn't work as advertised, what a surprise. We have limited resources, and we are skeptical of miracle claims for good reasons.Are you planning on starting any clinical trials? That would be useful.

    You got your info off pubmed? Do you mean abstracts? I hope not. You can never trust abstracts, you have to read the paper.

    Bye, Alex
     
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  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes xks,

    That would be very helpful and would only cost you a few million. ;)

    Sushi
     
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  11. SOC

    SOC Senior Member

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    [my bolding]


    By criteria a):
    Four years is just the beginning with this illness. The vast majority of the members here have had ME/CFS for more than 4 years. Quite a few have more than 20 years experience with this illness.

    By criteria b): Spending a lot of money hardly qualifies you to write about it, but even if it did, many of us have spent that much and more. Some of us have spent into the hundreds of thousands of dollars.

    By criteria c) We have many people here with advanced degrees in scientific fields. A good number in fields far more related to ME/CFS or medicine than chemical engineering.

    A good scientist or engineer understands how much they don't know.

    So by your own criteria, you are certainly not more qualified than most of the people here to write about ME/CFS, so your book is unlikely to be useful to anyone here.

    My advice to you is to head back to the drawing board and rethink your plan. Inadequate background research. Poor selection criteria. No understanding of customer.

    The most qualified people writing about ME/CFS are PhD scientific researchers and medical doctors specializing in the field. Those books are out there; you should look them up.
     
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  12. taniaaust1

    taniaaust1

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    4 years of CFS :rolleyes: . Your a CFS baby and so young to this illness that you dont even realise it. Most at this site have had this illness for over 10 years... some 30 years.

    There are so many more things dysfunctioning with this disorder then the ones you have mentioned.
     
    Min likes this.
  13. Sparrow

    Sparrow Senior Member

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    Congratulations on healing yourself.

    I don't mind you wanting to see if you can use your experiences to make some money for yourself, though I'm not sure that you will have as many buyers as you would have hoped. But it's up to every individual whether they judge your expertise worthy of sinking their money into. I won't be purchasing it, but I hope that it does well for you and cures many people, as we all deserve whatever good we can get out of all of this.

    I do think that it is easy to generalize what has helped us and to find reasons that might be the case for many other patients. And I think there probably are some commonalities. But in the end, I think we are often quite individualized as well.

    I do think that your approach is going to rub some people here very much the wrong way, though I don't believe you intended any harm with it. You might have more success in sharing the general details of what types of things you're recommending in your book (i.e. I wouldn't bother holding back the specific supplement names, as I don't think it will actually cut down your sales, and might be a better show of good faith to the community). You could still leave the details for your publication. Truly, to be honest, if you put your whole program out here in great detail, and people were actually cured by it as you expect them to be, I bet those people would be more than happy to buy your book after the fact in gratitude. No income lost. :)

    Maybe try "I have some answers. Here they are, and also I'll be writing a book about it." Then people can really like you for helping them and will want to buy your book just to help you out. "I have some answers and you can't have them until you pay me" strikes a more negative chord in folks here, when so many of us share every bit of info we can to help each other. I think it's unfortunately more likely to make people dismiss what you have to say, even if you were right.
     
  14. Rand56

    Rand56 Senior Member

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    I agree with this. Also, trying to talk someone out of writing an e-book and selling it, if that is what they have already planned to do...ummmm...good luck with that, although I totally understand other people's views who have posted already.

    Xks201, let's just hope you take into consideration before publishing your e-book that you don't term this as some kind of miracle cure and I would hope your theme would more be "this has what has helped me, maybe this can help you".

    If you do the former as opposed to the latter, I'd say going forward that is gonna be weighing too heavily on your conscience.
     
  15. Calathea

    Calathea Darkness therapy

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    Weakness and exhaustion sound like fatigue to me. Do you mean that they are so much worse than what is usually meant by "fatigue" that it seems an inappropriate word to use, like saying "headache" for "migraine"? I think of it as more of a spectrum, I suppose.
     
  16. iacyi

    iacyi

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    I describe myself as having chronic fatigue, I just like the sound rather than saying CFS. I fell a criterion short of the Consensus last time I checked, but this is the only forum that comes anywhere close...
     
  17. xks201

    xks201 Senior Member

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    The fatigue I had was so bad I would just lay there and feel almost paralyzed. I attributed that to an overgrowth of lactic acid producing bacteria (what you find in common probiotics). I ate those like candy too, which didn't help anything.

    I think a key of all of it is establishing gut flora that will help, and not harm you. http://www.rense.com/general4/bac.htm This is an interesting story.

    At the sign of every infection my mom brought me to the doctor who doled out antibiotics like candy to me. Ultimately the majority of our poop is bacteria. If the right bacteria aren't present...bad bacteria are going to multiply to form the stool, or you are going to have chronic diarrhea.

    There are a ton of supplements one can take, but I think a lot of what is happening with CFSers is they get an initial infection, they jump on antibiotics, and the pathogenic bacteria have nothing opposing it. I don't believe that acidophalus is all it is cracked up to be. I have seen pictures of cows switched to a high grain diet without inoculation with lactic acid utilizing bacteria and their intestines literally get charred from all of the lactic acid generated.

    Bacterial fermentation as everyone knows is a natural part of the digestive process. Nutrients are reabsorbed past the stomach. If the right bacteria, which in my opinion are not lactic acid bacteria predominately but most likely soil based organisms are not present, then the watery diarrhea will continue and bad bacteria will multiply completely unchecked.

    This is a simple concept that all of you are probably already aware of.

    I am never touching another probiotic that contains a lactic acid producing bacteria again. I don't want more lactic acid generated all day long. High lactic acid is one source of fatigue, and a very efficient source at that. Several doctors have even said that as long as 85% of the bacteria in the gut is good 15% can be bad without symptoms appearing. That is the key. And I believe non lactic acid producing probiotics are far superior because they do not pose a metabolic burden.
     
  18. SOC

    SOC Senior Member

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    Nope, neither daughter nor I had any antibiotics for years before or several years into the illness, so we don't fit your theory. We'll have to see if it fits other people here.

    I'm glad, though, that you found what it was that was causing your fatigue and that you found a way to correct it.

    ME/CFS is far more than crushing fatigue, although that can certainly be one of the many symptoms. Have you ever read the CCC (Canadian Consensus Criteria for ME/CFS) or the ICC (International Consensus Criteria for ME)? If not, I suggest you do so; I think you'll find it very interesting.

    I'm struggling with mental fatigue today and finding links seems to be beyond me tonight, but I'm sure some kind member will add some links for you soon.
     
  19. taniaaust1

    taniaaust1

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    That wasnt so in my case. I was studying at a Naturopathy collage when I first got ME and didnt even believe in taking antibiotics. I dont think I had an antibiotic till at least 10 years into my ME (and that was only cause I had both staph and strep at the time).
    Instead I used vitamins and immune system strengthening herbs etc etc when I got sick and during many years of ME.

    Doctors anyway wouldnt give me antibiotics as they kept diagnosing me with "an unknown virus" for the first 9mths of the ME.. and antibiotics arent used for viruses.
    Many doctors will not give out antibiotics when someone hasnt got a bacterial thing showing on tests (its bad practice just to give out antibiotics when a bacterial illnesses isnt even present). If your doctor was giving you antibiotics for ME with no real reason of doing so, in the eyes of good medicine, that makes him a bad doctor. (this is an issue they are trying to change in my country as too many doctors do give out antibiotics in cases they shouldnt be being used)

    You are using your own case and experiences to conclude too much about what has gone on in others.
     
  20. Sparrow

    Sparrow Senior Member

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    Just a side note that I have heard both good things and warnings when it comes to homeostatic soil organisms like the one mentioned here. I never did research in depth enough to form a solid opinion myself, but it might be worth considering both sides if anyone is thinking of experimenting with them.
     

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