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Is ME/CFS caused by biological stress and perpetuated by high catecholamines and low blood volume?

Discussion in 'General ME/CFS Discussion' started by leokitten, May 23, 2014.

  1. leokitten

    leokitten Senior Member

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    This post is very much just trying to crystallize my ideas of the last few months and get some feedback, sorry for the length. I know what I'm saying is not new and maybe others have connected the dots as well. Even though this is a long post I cannot cover everything I've learned which has led me to this conclusion but I can add details if asked.

    Just to give some background again about myself, I fell ill in January 2013 with what appeared to be a sudden onset flu-like illness and the subsequent downward spiral of classic ME/CFS symptoms and continually worsening condition. As the disease initiated and symptoms appeared I noticed that in truth it wasn't exactly sudden onset, that I had gradual appearance of low-grade symptoms over the years that I just attributed to "getting older" which were in fact likely the beginnings of this disease and the sudden onset at the end was just the final tipping point that started a serious chain of events.

    In March 2013 when I came to terms that this "flu" I was having and worsening condition wasn't going to resolve itself I started going to doctors and doing all kinds of tests and trying to measure and figure things out on my own. Of all the insane and severe symptoms I was having only one test they did showed something amiss, a 24-hr Holter monitor showed I was having ~800 PVCs/day and of course like many of you from almost the moment I got sick I started having severe heart issues.

    During this time I started all kinds of vitamins and supplements, severe diet changes, yoga and other exercises, etc. in a desperate attempt to figure out what might be wrong and fix it. None of these things made any difference whatsoever and I only got worse.

    It wasn't until September 2013 after seeing my PCP, cardiologists, neurologists, endocrinologists, urologists, gastroenterologists, etc. and all the MRIs, CTs, echos, holters, lab work, other tests, etc. that other diseases were ruled out and everything pointed to ME/CFS.

    After this confirmation I found an ME/CFS doctor and proceeded to do a mountain of ME/CFS-specific lab work for things that can be treated. At that time I found I had very high antibody titers to HHV-6, CMV, EBV and Mycoplasma pneumoniae. I started effective treatment against all these infections right away with high dose Valcyte, Famvir, antibiotics and Lovenox.

    When I started treatment in September 2013 I would say I had a very "clean" version of this disease because I caught it fairly early and did not yet acquire any of the downstream problems many other people with ME/CFS get after having the disease for a long time without treatment, e.g. no HPA axis or other hormone deficiencies (yet), no other infections, no MCS, no autoimmunity, etc.

    My health and symptoms only got worse from the moment I got sick until approx. two months after starting hard core treatment with pharmaceuticals. At first the downward spiral stopped and I stabilized and then slowly certain symptoms started to improve. In addition I started filling any gaps I had in supplementation and covered all the possible bases, i.e. mitochondrial, methylation/glutathione, autonomic dysfunction, hypercoagulation, immune, liver/detox, leaky gut, you name it I'm taking it.

    One important thing I noticed was that with all this treatment only a portion of symptoms were improving, I definitely felt that parts of this disease were continuing to evolve and doing damage and getting worse. So I kept researching and doing new tests.

    The next tests that shed light on continuing symptoms where some 24-hr urine and other tests. As is typical with ME/CFS, I found that I have polyuria (approx 5 L/day but somewhat intermitent), high plasma catecholamine levels, periods of highly elevated cortisol followed by normal-to-low cortisol (like my adrenals are fatigued following a period of high cortisol production), and zero antidiuretic hormone (ADH or vasopressin). Also I used to have normal aldosterone levels earlier in the disease and then later as it has unfolded more and more they became very low.

    After measuring 24-hr urine volume and seeing this was way too much water loss I immediately realized I've been peeing this much and more at least since I became ill if not earlier. This chronic mild-to-moderate diabetes insipidus and blood volume loss is definitely something extremely important.

    Also since the moment I got ill one thing I continually measured was my blood pressure and heart rate. I started having POTS and OI within weeks of getting ill, right around the same time the heart symptoms started. What confused me at first is that this disease made me go from normal low blood pressure and heart rate to constant slightly high blood pressure and an abnormally very low heart rate with periods of tachycardia, generally when I stood up or lied down or sometimes out of nowhere. My heart rate is usually 50-55 bpm and during the 24-hr Holter monitor I did early in this disease which showed the PVCs it also showed that my average heart rate during sleep was only approx 40 bpm.

    So knowing this and seeing the high 24-hr urine catecholamine results I started low-dose clonidine recently. Not only did it normalize my blood pressure right away, after taking it for a while it has made some serious symptoms that were not getting better with the antiviral and antibiotic treatment slowly disappear.

    I can tell you for sure that some of the gradual symptoms that started appearing years before getting outright CFS were those fixed by clonidine recently. So to me for sure elevated catecholamine levels preceded onset of ME/CFS. I cannot say whether the DI and lowering of blood volume precede it but we all know that there is a connection between catecholamine levels and blood volume.

    So what causes chronically elevated catecholamine levels? Biological/physiological stress. Even though I don't have proof from my own labs I would also say that cortisol levels are very high early in this disease if not for a long time before and I remember reading that other ME/CFS experts believe this. What causes high cortisol levels? Biological/physiological stress.

    EDIT: Everyone I'm NOT talking about mental or psychological stress, I'm talking about physiological or biological stress which is what causes chronically high levels of catecholamines and cortisol.

    The clonidine made additional symptoms improve or disappear but there are still other serious symptoms that seem to be related to chronic loss of blood volume. I am just starting desmopressin/DDAVP and IV saline. My initial belief is to try to get my body to return back to normal without the desmopressin, just clonidine plus frequent IV saline to see if after doing this for a few months my body will be able to recover and then reset itself.

    If you read the NorCAPITAL trial paper by Wyller testing the hyperarousal hypothesis he didn't fail or disprove anything except that his particular protocol failed. After reading it I was upset that Wyller said clonidine isn't useful in ME/CFS. He's wrong and the reason he's wrong it like a lot of other researchers they are looking for a single magic bullet and that will never work.

    If he corrected the low blood volume and polyuria in addition to the elevated catecholamines I believe he would've seen different results. Look for example at this Wikipedia text describing treatment of a more severe disease causing elevated catecholamines, pheochromocytoma:

    When you take out all the infectious-related symptoms all the other symptoms of this disease seem to be explained by high catecholamine levels and low blood volume. And the intercellular infections come about due to a Th1 deficiency which is caused by chronic elevated catecholamines and biological stress.
    Last edited: May 24, 2014
    JBB, Ruthie24, maryb and 2 others like this.
  2. peggy-sue

    peggy-sue

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    This is basically the bio-psycho-social theory put about by the psychos.

    We're just stressed and depressed.
  3. leokitten

    leokitten Senior Member

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    peggy-sue I don't agree. There are many kinds of biological stress not necessarily the well known psychological ones. Something is causing chronically elevated catecholamine and cortisol levels and I am certain these precede the onset of this disease for a long time and this state of physiological (not psychological) hyperarousal must damage and wear down the body over time like e.g. causing intracellular pathogens to reactivate and attack, causing blood volume loss, all until we hit a tipping point where we blow up and get overt ME/CFS.
    Ruthie24, maryb, Jenny and 1 other person like this.
  4. peggy-sue

    peggy-sue

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    Depression resulting from long-term uncontrollable stress is physiological.
    This is where the psychos start messing around and start saying; "but of course it's real", before they revert to going back and saying it's the "mind", and being sneakily dualistic, while pretending to be monistic.

    I've been through it several times. I get depression at the end of it.

    I got depression from the stress of living with this damned disease for 4 and a half years.

    Long term stress did not lead to me getting ME.
    Tito and Jon_Tradicionali like this.
  5. leokitten

    leokitten Senior Member

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    I don't think you are understanding my use of the word stress. Please see this wikipedia page which describes what I mean:

    http://en.wikipedia.org/wiki/Stress_(biology)

    which is a different page than this one:

    http://en.wikipedia.org/wiki/Stress_(psychological)

    Which I am not necessarily talking about. The stress I am talking about is physiological and encompasses a lot of things.
    Last edited: May 23, 2014
    rosie26, maryb and SOC like this.
  6. A.B.

    A.B. Senior Member

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    Do CFS patients tend to have high catecholamines?
  7. leokitten

    leokitten Senior Member

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    Yes absolutely, this has been shown definitively in clinical research and trials and in patients at the doctor's office.
  8. peggy-sue

    peggy-sue

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    Sorry, it really is all the just the same stress.
    The so-called "psychological" stress does lead to the same physiological responses as any physiological stress.

    Making one out to be psychological and the other biological is what is silly. And dualsitic. And what the psychs use to bamboozle folk.
    I have studied these topics at uni, as well as doing the practical in real life.
  9. peggy-sue

    peggy-sue

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    Ardrenalin and noradrenaline and dopamine are the major catecholamines.
    I don't think we tend to be running high on these.

    But Phil Parker and his theory would have it that we do.
    The result of continuous release of too much (theoretical) adrenalin is what he fixes with his lightening-your-wallet "therapy".
  10. A.B.

    A.B. Senior Member

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    Well, mine are not high. My adrenaline is very low actually, as seen in a 24 hour urine collection.

    In any case, in Wyller's study patients got worse on clonidine, which can be interpreted as increased sympathetic nervous system activity actually being a helpful adaption to the illness.
    peggy-sue likes this.
  11. leokitten

    leokitten Senior Member

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    No this is not correct, there is so much research out there showing that ME/CFS sufferers tend to have elevated catecholamines, sympathetic dominance, and abnormal catecholamine responses in addition to other autonomic dysfunction.
    Last edited: May 23, 2014
  12. leokitten

    leokitten Senior Member

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    Actually if you read his paper and supplementary material you will see that the conclusion that clonidine is not useful and the interpretation that increased sympathetic nervous system activity is in some way beneficial is way too much of a stretch based on the design and results of the trial.

    All one can say from the trial is that his particular protocol failed, 50 mcg clonidine bid and no other treatment, on the endpoints he chose to use, which was steps made per day. I didn't agree with his experimental design whatsoever I think it was too limited.

    I believe that if he used a sympatholytic to correct the sympathetic dominance while at the same time corrected the low blood volume and polyuria he would achieve different results.
    Last edited: May 23, 2014
  13. leokitten

    leokitten Senior Member

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    How long have you had the disease before doing this test? How old are you? Do you or did you have polyuria?

    Things change with this disease over time as it does more and more damage and also your age effects things. This thread I started is an attempt to examine what we see in the beginning and what might be the root causes.
    Last edited: May 23, 2014
  14. Martial

    Martial Senior Member

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    I don't think she is trying to do any harm by writing this, just sharing her findings and posting it here for thoughts by others. We are a community that is meant to help each other out and look into research and ideas that can propel things in the right direction. It might not be the direct cause of ME/CFS but it is an important component to take in regardless if it helps.

    I think people are being reactive because she is mentioning "stress" and it brings the stigma of ME/CFS being related to some kind of psychological stressor or mind made cause. This is not what she is mentioning though, rather it is oxidative stress to the biology of the body, something that can easily cause a lot of symptoms and is a very likely a side effect of the underlying infections that were mentioned. It is possible that there was stress in the system for a long time before the disease and something tipped it over for leokitten directly related to the infections.

    Pyroluria can definitely cause a lot of these changes though and screws with our methylation function and immune system health, it is possible that is a major cause of some of these issues. As well as the infections throwing everything out of balance. Mycoplasma is a very serious and deeply penetrating infection that can even reach into bone marrow because it lacks a cell wall.

    I appreciate the time and effort you took to write this and I hope you won't feel dissuaded by some of the more negative reactions, I know what you are trying to convey in your message and it is very helpful. I know you are not trying to state that stress alone causes M.E./CFS. On the other hand oxidative stress and emotional stress are not the same thing as well that is important to keep in mind. I hope you heal up as much as possible, those are very serious infections and I think you will start making a turn for the better once it is all under control again! Definitely be sure to treat that pyroluria because nothing will get better unless you do. You need b6 for proper enzyme function, energy production, methylation process, and general balance of neurotransmitters of the body, Zinc is also necessary for the immune system to function and also in methylation upon other things. These things can be severly deficient in pyroluria as I am sure you know!
    Last edited by a moderator: May 24, 2014
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  15. SOC

    SOC Moderator and Senior Member

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    Multiple people on this thread seem to be misinterpreting "stress" as psychological stress. Stress comes in many forms and most of them are NOT psychological. A pathogen is a stressor on the body, for example.

    @leokitten can correct me if I am wrong, but it is not my understanding that he is suggesting that psychological stress is at the root of our illness. Please read leokitten's post #5 in this thread and the links he provided to show the distinction. I see nowhere in the OP any reference to psychological stress initiating (or perpetuating) the illness.
    Last edited by a moderator: May 24, 2014
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  16. SOC

    SOC Moderator and Senior Member

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    I suspect that if we're going to play "my education is bigger than your education", @leokitten is going to beat you hands down. ;)
    maryb, peggy-sue and SDSue like this.
  17. A.B.

    A.B. Senior Member

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    Many years.

    28.

    Mild.
  18. alex3619

    alex3619 Senior Member

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    This is just replacing detailed knowledge of biochemistry with vague "stress". Stress is biochemistry. Just saying stress does not replace detailed understanding of the biochemical dynamics. In any case when biologists speak of stress factors, they speak of stressors. ANYTHING that perturbs normal function is a stressor ... but it does not equate to stress. This is a different use of the term. If you wish to cite biochemical stress, which appears to be the case, then to avoid ambiguity and misunderstanding its good to stop using the term "stress" as you will be continually misunderstood. Its also better to be clear about specific biochemistry, and the evidence for it, than citing stress or stressors.

    In terms of conventional notions of stress, the stress model is dead so far as I am concerned. It would take major and striking research to resurrect it. Many people get stressed, only people with ME have our unique issues with energy production.

    Now if someone has ideopathic chronic fatigue, aka CFS, then it could be anything. That does open the door to psychological stress and stressors. Yet being possible does not make it reality. The stress model has failed here too.

    The question as to whether biological stressors can cause ME dysfunctions, the answer has to be yes. The term is so vague and encompassing that just about anything as a cause of ME would be called a stressor. Again, to avoid ambiguity and misunderstanding its good to not use the term. Stick to the biochemistry, as you have done with catecholamines etc.
    Leopardtail likes this.
  19. A.B.

    A.B. Senior Member

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    Yes, this critique is justified here. Biological stress is infection, autoimmunity, exposure to environmental toxins, etc. Why talk about it in vague terms?
  20. SOC

    SOC Moderator and Senior Member

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    I think the intention was to use "stress" in it's scientific/medical context -- something that upsets homeostasis. The very general word "stress" is used in medicine to describe any of a multitude of conditions that all have the same effect -- to upset homeostasis -- without intending to specify, or imply knowledge of, whether that condition is a toxin, an infection, autoimmunity, psychological condition, or any of many other possibilities. The effect is what is being discussed -- the upsetting of homeostasis -- not the specific cause of the effect, so the general word "stress" would be appropriate rather than stating (or implying) a specific stressor since that is unknown.

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