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Cured Myself After 4 Years of CFS

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

  1. brenda

    brenda Senior Member

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    It is very typical in the course of Lyme Disease, to become extremely ill with the symptoms being caused by the activity of the immune system, then after a period, to seemingly become much better and even to think that one is cured.

    This is false as the disease process contines, though it might get knocked back through a course of antibiotics for some other infection. The improvement is due to the lessening activity of the immune system which is now being fooled by the bacteria. The bacteria mimics the DNA of the host so that it is relatively left alone to invade the whole system.

    This is the process which went on with me, until 10 years later when I discovered the awful truth. Western Blot blood tests for Lyme are not reliable.
     
  2. Daffodil

    Daffodil Senior Member

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    hmm...maybe there is something to this gut flora theory. but what is causing the inflammation that results in this gut flora imbalance? i know i dont have lyme....and i know that 100%.
     
  3. brenda

    brenda Senior Member

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    Hi Daffodil how are you so certain if you dont mind me asking?
     
  4. taniaaust1

    taniaaust1

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    I think its more so "attitude" of some newbies which are rubbing some others the wrong way (its no different to how we may go to a doctor and be told "I can fix you" and we get sick of hearing that so ends up causing an emotional response if its been said enough times), rather then the fact they are newcomers.

    I dont think anyone goes "oh there is a newcomer.. lets target them".. No one likes to be looked down upon as they havent been able to recover. (there has been that attitude a bit at this site of late.. a looking down on those who have been sick long term ... not saying this thread poster has this attitude but it is one Ive noticed at the site recently).
     
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  5. Tito

    Tito Senior Member

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    I agree. After a while, all these little sentences (more vegs, less coffee) start to sound like "you poor idiot who has been rotting in your bed for the last 20 years, you did not know that 1 asparagus a day happiness all the way?"
     
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  6. Tito

    Tito Senior Member

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    I read the book "smile or die: how positive thinking fooled america and the rest of the world". The author describes the same phenomenon with breast cancer sufferers: if you don't recover, it's because you do not think positively enough (ie. it's your fault). And people who explain they're having a relapse are ostracised in forums in a very nasty way. The author explains how cruel this is. I also find it cruel when people come with their simplistic tips.
     
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  7. Sparrow

    Sparrow Senior Member

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    I understand completely. I'm already bed bound and shouldn't be using the computer right now either... Spine is burny. :) I do think it would have helped me to know how much damage I could be doing, though, or how seriously to avoid activity if I was having a serious crash. At the time that I became bed bound, I had NO idea that it was even possible for me to become so seriously sick if my previous symptoms had been milder. I thought I must just have had a "milder case". And I had no idea that exercise/activity was such a serious factor, or how bad the consequences can be even if it seems like you can push through it at the time (it seems SO long ago now that that understanding wasn't a well-ingrained part of my life!).

    I think a big part of the problem right now is that most doctors don't KNOW how serious pushing through things can be for us, so even the most well intentioned ones don't know to warn us (combined with the inclination of some of them to assume that we're doing too little when in fact it's the opposite). I truly think the vast majority of doctors would advise us in the safest courses of action for us overall, it's just that they don't have more than the absolute most basic knowledge about this illness. And some of them not even that.

    The more I go through all of this, the more I think that doctor education is the critical key to improving our situation. For better care, earlier diagnosis, more general awareness, credibility, etc. If every doctor was educated in the realities and severity of ME to the point that it became common knowledge, I bet down the road we'd have a lot less struggles to be taken seriously and a lot more doctors advocating on our behalf.

    Which is probably just a newsflash from Captain Obvious, but I feel better having said it. :)
     
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  8. xks201

    xks201 Senior Member

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    The problem is, half the doctors still don't believe that chronic fatigue is a real disease process or that it can be cured. By my doctor history, I can probably say that 90% of them don't believe it is real. And 99% of them have no ideas on how to treat it. lol Just basing it off personal experience. And I've read all the CFS docs' ideas and am thoroughly unimpressed. In the end most doctors are concluding it is gut dysbiosis that is a major contributor in most cases of CFS.

    Personally I had food poisoning about 6 times in one year before contracting CFS. Was it really food poisoning each time or was it the same infection over and over? It was bad food poisoning too.
     
  9. Googsta

    Googsta Doing Well

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    I have had several years of remission myself, thinking I was cured only to come crashing down again. I was back at work, gym etc.

    Unless you have maintained at least 80% functionality for at least 5 years (post illness) you are not telling us anything we haven't heard before.

    I hope your improved health lasts :). I know it's hard losing 4 years of your life but you stand to lose alot more if you are not very careful.
     
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  10. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Chronic Fatigue is a symptom, not a disease process.

    I only am posting this because we have got to stop saying CHRONIC FATIGUE. Atleast put in the immune dysfunction syndrome part on the end.

    There are a million and one causes of CHRONIC FATIGUE, and if we as patients use those two degrading, demeaning, deadly words to describe a very disabling disease process, we will not be taken seriously or our condition viewed as the serious life altering thing it is, because everyone thinks they have CHRONIC FATIGUE....over worked people, busy parents, people who dont eat right or sleep well, hell most doctors probably have some degree of fatigue most of the time due to the demands of their profession....

    What about the neurological abnormalities, hormonal problems, sleep dysfunction...so on so on..... CHRONIC FATIGUE as a simplistic term leaves all those out! Idiopathic hypersomnia may be a better term if a person has simple CHRONIC FATIGUE.

    FATIGUE by definiton is relieved by rest. ME/CFIDS is NOT relieved by rest. The damn name doesnt even make sense, they screwed up from the beginning.....no wonder most doctors dont give a $&@& about simple "Fatigue".

    How about crushing exhaustion or going into periods of complete body shut down. People who have experienced this know what I am talking about. Like your organs have ceased working.

    I am not ranting at the poster, just ranting in general!

    The poster may be interested in the work of Prof. KDM...check out GcMaf threads.

    KDM is THE "GUT DOCTOR".

    Also if you think gut issues are at the core of your problem, a regular sympathetic Gastroenterologist may let you try XIFAXAN. Mine did! He was ver interested in the post infectious CFIDS process. I may look into trying it again.
     
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  11. xks201

    xks201 Senior Member

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    Moon I am empathetic to your description of this disease. Chronic fatigue simply means unrelenting fatigue. I do not know the statistics on how many people with chronic fatigue actually have immune dysfunction, but I agree with all of your points that the two are most often a package deal. I was equally frustrated in the past when I would hear people tell me that they were tired too - yet they managed to go to work and cook dinner and do things I could only dream of doing.

    It is a chicken or egg problem though. Did the fatigue always come first or did the immune deficiency or did the infection or did self induced stress come first? The answer is probably a combination - and then when you throw in genetic factors all of those previous mentioned factors can possibly be thrown out the window.

    The fact is is that there are so many things going wrong at once that you could easily diagnose the average "chronic fatigue" patient with 10 diseases, so I agree with you that it is much more complex than just unrelenting fatigue. The only way I can even begin to see this disease as treated is to start plugging holes like on a sinking ship.

    To me the most salient symptom of most of us is orthostatic intolerance. I bet probably most of us have had it at one point. And that most likely points to an imbalance in the renin-angiotensin system. An overactive "hyperadrenergic" sympathetic nervous system seems to cause this. In this study they are using an angiotensin receptor blocker (high blood pressure drug) to attenuate symptoms of orthostatic intolerance, which in a sense is paradoxical.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765216/?tool=pmcentrez

    Yet, I know CFS patients that also have high blood pressure. So it is a misnomer to think that be simply increasing blood pressure this so called orthostatic intolerance is going to completely disappear.

    I was reading a chiropractic book and it was said that an overactive sympathetic nervous system will decay the immune response in addition to producing fatigue.

    You can go to this website for example where a guy supposedly cures many people by focusing on decreasing the hyperactivity of the sympathetic nervous system. www.actionlove.net Excuse some of the sexual/medical content (only click it if you are over 18).

    Ultimately my method is to address the hormone deficiencies, populate the gut with soil based organisms (not lactic acid bacteria), and enhance the functioning of the parasympathetic nervous system. This has been working for me. YMMV

    The most important point I can personally mention is the connection between the nervous system, the immune system, and the gut. It is essentially one component. The gut produces neurotransmitters. The immune system produces cytokines. Everything is constantly interacting. So if one of those is hyperactive or infected/dysfunctional the whole system will show symptoms - and that is why this disease IMO is so perplexing to doctors because by the time the chronic fatigue has set in all three of those variables are corrupted most likely. There is a gut infection - the sympathetic/parasympathetic control of the nervous system is not functioning properly, and the immune system is going crazy dealing with bad bacterial overgrowth and or falsely activating itself from the hyperactive sympathetic nervous system. I'm not saying this is every case of CFS I am just saying this is an example of how something can go wrong. And then you throw in hormone deficiencies and those in themselves can cause these 3 components to self destruct.

    The nervous system imbalance can be an esoteric concept - but we can all confess to having the tired but wired feeling at times. It is ironic how many claims I see of no energy during the day but insomnia at night.
     
  12. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I would say nearly 100 percent of people with a CFIDS or ME diagnosis have immune dysfunction.

    I would say 100 percent have some sort of HPA dysfunction.

    A person with simple Chronic Fatigue may not have any immune dysfunction.

    There are doctors who test for this stuff. Such as Nancy Kilmas. You can find out if you have persistant viral activation. Or NK cell dysfunction. Or sleep dysfunction. The only people I know who report waking up from sleep feeling 100 times worse than before they went to bed are people with CFIDS or ME. It has been theorised that the immune system "turns on" at night. Deep sleep disappears. There is something wrong neurologically.

    I think perhaps a term of Persistant Fatigue is better to describe people with unexplained fatigue. But CHRONIC FATIGUE has to be banished because it is killing people with a serious neuro immune illness.

    People have died from ME and they still call the illness CFS. It is unbelievable.

    Look up the work of KDM on the gut.

    Gut problems may not just be bacterial imbalance or food intolerance- Enteroviral Infections are largely implicated in ME.

    My point is just that we have to stop saying Chronic Fatigue, no one with CFIDS or ME deserves to have their serious illness watered down to one symptom.
     
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  13. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    As others have also said, no one with long term cfids or me describes themselves as cured but in remission because this illness can be cyclic in nature. I would not use the words in remission unless I was 90 percent symptom free for one year. That is not thinking we are doomed with something incurable. There are many treatments that have brought people to a high level of functioning.

    Why do you think you are "cured?" For how long? I am genuinely curious, I am not being sarcastic!

    I am just Puzzled why you have a signature that says 4 years of cfs cured May 2012? That is this month!

    Unless a very specific, one specific, problem has been identified as the cause of your or a anyones illness, and treated and the person is 100 percent symptom free they are not cured.

    There are people on these boards who had 5-10 years of remission, able to live normal lives almost or completely symptom free, who relapsed later on. This is the insidious nature of the CFIDS/ME beast

    That being said not everyone relapses and some slowly improve to a point where they are able to do many things.
     
  14. xks201

    xks201 Senior Member

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    Simply because mine was a bacterial problem combined with a hyperactive sympathetic nervous system possibly due to an imbalance in the renin angiotensin system. Even after getting on thyroid medication my circulation generally was poor. See this testimonial for more information.http://flash.lymenet.org/ubb/Forum1/HTML/024783.html

    I never responded well to antibiotics either. I also introduced some soil based organisms to get rid of dysbiosis. I have done quite a bit but unless I fixed the hyperactive nervous system producing vasoconstriction nothing was going to help.

    I have read that even high heart rate or blood pressure can cause hypoglycemia due to the heart using up blood sugar at a fast rate. And some of us are in a constant state of fight or flight with inappropriate vasoconstriction. And if we go to sleep like that, blood does not flow properly and the body cannot function properly. Magnify that disease process over a period of months and the body eventually cannot repair itself at night. Anabolism is measured in nitrogen retention in studies. Obviously nitrogen is vasodilator and according to studies it has anabolic properties. It is a very simple principle that vasoconstriction will cut off proper circulation to the inner organs and smaller blood vessels. If that is constantly the case then problems are going to emerge. The scientific paper I mentioned in my previous post talked about how that exact process causes orthostatic hypotension.

    The problems do not sound so specific but the treatment was.
     
  15. mellster

    mellster Marco

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    I agree with Justy here and while my research does not support xks' theory right now, it is possible that it might be the cause for just very few and actually help them. Point is research is still in its infancy and we don't know very much although these are exciting times. IMO it is not very useful to bring up statistics suggesting to members that they will relapse just because they claim/think that they cured themselves as most statistics are usually worthless in such a pervasive yet hard to define condition. I also think that most people who do eventually recover will likely leave any forums and their doctors and not only not show up in statistics on the positive side but also not share what treatments they think eventually helped them - and that's a big negative IMO. If only one or two people here have success following xks's suggestions it was worth it IMO. Of course you can make the counter argument that it may be dangerous and/or a waste of money/time to try unproven treatments/diagnostics, but then simply don't do it. Personally I would not leave a stone un-turned to try and fix this crap. Hope everybody feels better today :)
     
  16. xks201

    xks201 Senior Member

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    There are several schools of thought. One is that the entire illness is caused by a virus. This is perhaps the oldest school of thought. Another is methylation. Another is dysbiosis. Another is nervous system/circulation problems. I am oversimplifying obviously. Another is that it is purely a hormone problem. And I'm sure there are more.
     
  17. jace

    jace Off the fence

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    Another is that it is an Immune deficiency, like AIDS, caused by a retrovirus, and that all the other problems are downstream from there.
     
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  18. justy

    justy Senior Member

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    Sorry xks, i dont see what your point is here with this post.
    I wonder if you could acknowledge The moon is blue's request that you use the term CFS or M.E rather than Chronic Fatigue. Chronic fatigue is not the name of the disease that we have. Personally i have neurological M.E - others may use the term Chronic fatigue syndrome or Chronic Fatigue Immune dysfucntion.
    It's just a small courtesy i feel.
    All the best, Justy.
     
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  19. xks201

    xks201 Senior Member

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    So you would rather me say chronic fatigue syndrome than chronic fatigue? AKA CFS? lol
    I mean I'll say whatever makes you guys' hearts go pitty pat. As long as you know what I am referring to that's all I care about - but if you would rather me say chronic fatigue syndrome than chronic fatigue that's fine with me.

    The point of the post was to mention some schools of thought when it comes to causes for chronic fatigue. How could that be pointless?
     
  20. Mij

    Mij Senior Member

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    There is no problem discussing what has helped you and sharing, but we are not treating chronic fatigue here. There are millions of things that cause chronic fatigue including life threatening illnesses.
     

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