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CFS/ME as a Liver issue

Discussion in 'Alternative Therapies' started by undcvr, Aug 5, 2012.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    GracieJ, What do you suggest that people use for dry hands and skin? What is your take on bubble bath, bath salts, etc.?
     
  2. GracieJ

    GracieJ Senior Member

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    I use olive oil or apricot oil when my skin is dry, applied sparingly, and sometimes apply it at night. I stay away from bubble bath and bath salts and do not paint my fingernails. Epsom salts are my big splurge :) with a few drops of lavender oil if I want it to smell nice. Shampoo, deodorant, and bath soap are a little harder, but good ones are out there. My downfall is hair dye... just not ready to look my age (at 51, still pass for 15 years younger) esp with this disease state. I know it's the worst thing I do.

    I also do not use fabric softeners or scented laundry detergents, and stay away from all household cleaners if I can. Vinegar goes a long, long way to keeping the house clean, and a lot of things can actually be cleaned with plain water unless you need disinfectant. Your body will thank you.
     
    Little Bluestem likes this.
  3. undcvr

    undcvr Senior Member

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    This is a weird turn of conversation content for this thread
     
  4. GracieJ

    GracieJ Senior Member

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    I think it's apropos. Don't challenge the liver, it works better. That is exactly what I have in mind as I reduce the chemicals around me.

    Did you read my earlier post?
     
  5. undcvr

    undcvr Senior Member

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    As I leave the world of CFS and enter the real world of normal healthy people I find myself entering at the lowest possible rung. Very prone to stress but still able to function. I have not had a CFS episode in a while now and I have been working everyday of the week and getting by with 6 hrs of sleep on average.

    Sometimes when I hear normal healthy people talk about their symptoms, especially gastrointestinal ones, I wonder how much more stress they can take before CFS symptoms become more severe. It is very interesting.
     
    helen1, merylg and heapsreal like this.
  6. Research 1st

    Research 1st Senior Member

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    Hello.

    I agree with what you say, but in my view the AST/ALT tests are usually slightly abnormal in PWME so maybe worth testing after all if you're trying to build up a big bank of tests to analyse? Certainly not though if you want to go to a doctor with a theory that ME is nailing your liver, for sure.

    Admittedly these abnormalities in ME are not usually to the level of liver disease at all, but still not within reference ranges usually.

    E.g. My Aspartate transaminase (AST) aka SGOT, is elevated.

    Possibly an interesting finding as AST/SGOT can be elevated in EBV and muscle diseases. Both of these are usually implicated in 'CFS'.
     
    merylg likes this.
  7. undcvr

    undcvr Senior Member

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    In general a big subset of CFS patients can be grouped into 2 of the following 2 very important symptoms:

    1.) The liver: It has trouble detoxing and making and moving bile out of the body. Symptoms that confirm this are the inability to sweat and pale colored stools especially when sick or stressed. Healthy stool color is very dark. Think Mr Hanky the Christmas poo from South Park.

    2.) Lower body temperature than healthy people. About a degree or 2 less than 98.6. If this temperature is recorded daily for a prolonged period of time you correspond to the CFS that I have. This is very important ! Body enzyme systems cannot function if the body temperature is too low. The reactions won't go through and they breakdown under stress easily. It does not necessarily mean that your thyroid is not working properly although sometimes toxins backed up from a weak liver detox can make the thyroid malfunction too. It's just that the systems themselves have problem going through.

    I think this is why CFS/ME is so mystifying becos it is 2 separate and distinct systems that have broken down in the same individual. Everything else that happens is fluff.

    And if you have had CFS/ME since your late teens or early 20s, there is a very big psychological component to it as well.
     
    mellster, merylg and vli like this.
  8. vli

    vli

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    With those two criteria I'd say i def have what you call "your CFS". But if so doesn't treating with AVs creating a sort of catch-22? I hv yet to hear of someone who reduced their viral load PURELY by the process of egestion and Valc. is very hard on the liver. But at the same time, ironically if you take it you also take the stress off the liver from having to detox virus.
    Someone correct me if i understand this wrongly.
     
  9. mellster

    mellster Marco

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    Well said - I agree.
     
  10. Research 1st

    Research 1st Senior Member

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    Hold on a second here my friend.

    There is no evidence base in research for a 'big psychological' component' in ME at all. Depression rates, for example, in CFS are no greater than MS (Multiple Sclerosis), which is very impressive as ME (via CFS) is rejected by the medical profession.

    I would agree for some people labeled with ME or CFS they may go onto suffer from secondary depression and suicidal feelings which is a normal human reaction to being neglected in society and blamed for their own suffering. (CFS and ME being seen as a mental and behavioral illness by psychiatrists and their followers).

    undcvr, may I politely suggest It might be prudent to be a little more sensitive about making such sweeping statements about 'big' psychological dysfunctions in CFS/ME. I say this as many with ME on this forum would be offended by that comment, because they don't suffer from a psychological health problem and cope incredibly well. I won't react to it emotionally as it doesn't concern me personally. (I don't suffer from a mental health problem) but many might.

    NB: The biopsychosocial school of theory about what causes and maintains CFS/ME (e.g. ''beliefs'' in an undected/untreated organic cause) causes great harm to people with ME because these people who are often psychiatrists/psychologists working in leading teaching hospitals prevent medical tests being performed and advise other doctors not to investigate physical symptoms, simply by their theories. Some ME sufferers thus unnecessarily suffer because their organic dysfunctions, such as arthritis/autonomic dysfunction/heart arrhythmia are not detected.

    Subsequently the ME patient is harmed by the medical profession and their 'beliefs'.

    CFS/ME label includes a large array of fatiguing disorders of unexplained cause, both physical and psychological, however, it is not a green light for mental health theories to be 'fact', even if this is the wish for people on those professions to believe they run the town.

    Thank you.
     
    merylg likes this.
  11. Enid

    Enid Senior Member

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    I think it can become a liver issue - some indications for me but my brother far worse with diagnosed autoimmunity now (attacking the liver).
     
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Two doctor's visits back, my ALT was high. My doctor did not act like she thought I had a serious liver disease or injury. She just said to take some milk thistle. I dealt with it otherwise, but at my most recent visit the ALT was fine. Now my T3, which is produced by the liver, is messed up, so I don't think my liver is 100% right yet.
     
  13. mellster

    mellster Marco

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    I think that's what he meant - if you had it for such a long time (since your teens/twens) then secondary depression is likely due to the brutal nature of this illness - don't think he meant it the way you took it.
     
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  14. Jarod

    Jarod Senior Member

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    Good points on the bile. I agree 100%. I know I feel so much better and gage that mostly by my GI system, and more specifically the stool color and texture. Pretty gross, but critical for me.

    I found eating kale might help with this. Kind of a new experiment, but I can't take the sulfur supplements. However, I can eat kale. Not sure what is going on with that.

    Didnt' know about the body temp. good to know.
     
  15. undcvr

    undcvr Senior Member

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    Jarod It's interesting but S (Sulphur) supplementation does not help CFS liver issues and this has been reported by many others. You would think it should help becos it supports the liver Phase 2 detox pathways of sulphation and Glutathione. But here is my point again that it is not these 2 pathways that are not working well but it is the liver's bile production ability that is impaired.If you are trying out kale, go all the way, have Dandelion or Chicory. They work the best and are really really cheap. There is a roasted dandelion root tea that tastes really good.

    Research 1st No, I am not making general sweeping statements. I have interviewed and talked with many many other pple with CFS on this forum and for many of us whose CFS set in in the late teens to early 20s for no apparent reason just that suddenly one day the body broke down and became very sensitive to stress, there is a childhood component there. This is not about psychological symptoms as defined by the medical psychiatric community, it is more subtle than that, it is about child psychology and the first 7 years of your life when you are learning and absorbing things from around you and don't know what to do about it. Also you can't remember it.

    I am also one of the few pple who have managed to find a way out of it so I really know what I am talking about.
     
  16. undcvr

    undcvr Senior Member

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    No you got it right. I did feel better on the Valcyte but going off it brought all the symptoms back and I realised that it was not the way out of CFS that I hoped for. That was how the Artichoke and the Milk Thistle came in. That is why looking bck I now recommend still taking supplements while going on the Valcyte. The point is that Valcyte is a temporary fix while you are on it and while you are on it you should be using the opportunity to actually treat the main causes.
     
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  17. Jarod

    Jarod Senior Member

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    undcvr

    I think I know what you mean about healthy bile flow. What a relief when that is working properly. I'm at the other end of the spectrum at the moment. Nothing is moving and the color of my stool is off.

    When I had this problem bile/stool color problem before. Antibiotics helped quite a bit. I was taking levaquin(would never take levaquin again), doxycycline, and flagyl for an unrelated issue. When I took NAC, the stool color and constipation came back. I'm pretty sure it was some kind of reaction to the NAC that through my bile production off again.

    What else can I do to improve bile production?

    I take ox-bile. I take milk thistle. Also take digestive enzymes. I also take pro-biotics and sacrramyces. Also magensium. also b12 and ab12. These all seem to help.

    Anything else I should ask my doctor about trying?

    thanks!
     
  18. undcvr

    undcvr Senior Member

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    I just mentioned the dandelion root, chicory root or the salad of either. They can be steamed too. Artichoke standardised. Take lots of it a day. I don't think u shud take ox bile. The whole point is to make the liver produce More bile. This way as it does this it starts to pull toxins from the rest of the body and it triggers the detox engine to start running again. B12 nvr really worked for me but separately and having nothing to do with the liver and bile, taking B6 in the P5P form and lots of Zn helps.Stay on the protocol for at least a year.

    I understand what u mean by taking abx and seeing improvement. It works in the same way that Valcyte does but that is not the root issue. It buys you time and relief to go treat the real cause.
     
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  19. undcvr

    undcvr Senior Member

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    Honestly I have no time to argue with you about this. Believe what you will but the FACT is that I am one of the few pple whom I would say is successfully finding a way out of this illness and I know what I am talking about. Many pple on this forum can back me up too because over the years that I have been posting here I have been doing my own interviews, coming to my own conclusions and then planning a strategy of what to do and how to approach it. It is paying off.
    The fact is: is that there is a commonality. There is a psychological component to it. Pple who are more aware of it do better.
     
  20. Uno

    Uno Senior Member

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    If you have pale clay coloured stools see a doctor dont just assume its ME related.
     

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