Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lyme, CFS, M.E., Chronic Illness, And relation to Conversion Disorder

Discussion in 'General Treatment' started by Martial, Jan 28, 2014.

  1. Martial

    Martial Senior Member

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    Hey everyone! Been a while since I posted here.. I had been doing some more digging into my own illness that has been going on and pinned down some interesting things. First that was interesting was that it all started going down hill once I got treated with antibiotics for a sinus infection, for the first 10 days of Ceftin, and the following ten days with Amoxy I grew increasingly more sick... I at then time went searching for some of the things that could have been causing this.. I didn't feel malaise in any way, or had post exercise fatigue, the amount I moved each day and stress did not seem to correlate to having crashes.. It was always when I added antibiotic type treatments like antibiotics, or more recently herbal antibiotics like Grape Fruit Seed Extract, and Prima Una De Gato.. The last one which really messed me up with all kinds of bone, joint pain, and my nervous system going haywire with more symptoms then I could think to list.. I had been bitten by several ticks in my life visiting my now ex GF in Pennsylvania, living as a young kid in New Jersey, and several different times in California.. I do not know which time could have caused Lyme disease but after the severe herxing from treatment I was convinced this was the issue.. I scheduled an appt with an infectious disease specialist that is an expert on Lyme In California for an official DX from IgeneX Lab testing, and to get a doctor's assistance on treatment..

    The problem however was that this wasn't the only thing going on.. Previously to the sinus issues which warranted the antibiotics I was hugely dissociated and emotionally blunted, from a previous emotional challenge/trauma... During this period I would feel completely numb but still happy and doing things.. though I started getting weird neurological issues that produced a lot of worry in myself... Certain periods of the day or randomly I would be filled with immense rage, sadness, fear, or many other feelings and sensations.. The feelings would come very hard and very quick and overwhelm me, however I had no way to process them because I was so de personalized.. It ended up playing out and trying to resolve conflict using my nervous system instead.. I woke up some days and found I couldn't walk, having severe issues with Gait, or Balance, Random blurring of my vision, severe muscle cramps, twitches, or deep neuropathic pains, the fatigue and sleep issues being the worst, as well as parkinson like stiffness where my whole body would contract and grow incredibly stiff to movement.


    I urgently went to the ER and had some testing done, all showing normal blood work and had some MRI work done on several different occasions.. All results came back normal and I have absolutely no family history of auto immune issues.. The clean MRI results also made MS extremely unlikely... I then wondered what the hell was going on.. What could be causing all of this? I then looked into b12 deficiency and was convinced it was the source of my troubles... What I can say for sure is through the periods previously in my life I definitely could have slowly depleted my b 12 levels, a combination of certain medications and stress from severe anxiety issues.. I got a nutrient test scheduled and started on some b12 shots to help restore my normal levels of functioning and heal my nerves..

    I noticed though feeling a bit better it did not fully explain all of what was going on, and I still had some issues.. I was routinely seeing a therapist to help with the dissociation and mentioned some of what was going on, he mentioned Conversion disorder and I finally found an explanation for so much..

    My mind was not able to process a lot of emotions and something had to get it out of the system so my nervous system ended up in charge of this process.. Also it is extremely common to have Conversion disorder without a major psychological stressor or trauma component, it only means that your nervous system is acting out psychological distress. This is also extremely common with chronic health disease like Lyme, MS, and even CFS.. It can produce a very long list of symptoms as well and is not something that means you are making it up, or that it is all in your head.. Simply that the mind and body connection run very deep and that sometimes the body will act out these symptoms in response to emotional dsyregulation, or in the case illness effecting the nervous system emotions and stress can produce symptoms to be produced in the nerves..


    For now I am being treated for the Lyme disease and seeking an official Dx, as well as treating the emotional disconnect and hoping and praying to get my mental and physical health back very soon... I am also not saying it is 100% for sure that I have Lyme without a confirmed medical result though feels more then 90% likely based on herxing reactions alone.. In my own case it seems the combination of possible lyme disease and emotional dysregulation caused very severe issues with Conversion disorder, previously called Hysteria though these are just labels to describe symptoms..

    I had done some previous exploring on this site and made several different postings, as well as started methylation treatment with Freddd who I must thank again so much for all the help! Whether or not I was not having methylation issues I felt SO, SO, much better after starting a methylation therapy, definitely helps if I do have Lyme for sure!

    I had found other threads as well and postings from others that sent out red flags of Conversion Disorder, which again is simply the nervous system producing physical symptoms of stress.. Very curable and I always try not to stick too much emphasis on labels. It is not as widely recognized today as in historic cases but very much as common as ever.. It can produce things as intense as total body paralysis, temporary blindness, deafness, inability to speak, and siezures.. I was posting this thread in hopes that others would be helped and if it does apply to them even if they don't know it, to seek treatment and ease some of the burden in symptoms that seem to come along with CFS, and possibly help in recovery or curing some people as I am sure it can cause symptoms of entire whole body illness as well, this doesn't mean anything is wrong with someone or that its all in the head again I cannot emphasis that more then enough.. It is just that our mind and body are very deeply connected and more commonly then some realize stress can become very, very physical in all levels of the physiology of the human anatomy!

    Hope this finds everyone well and is beneficial to others on here!

    Much Love!

    Todd
     
  2. Martial

    Martial Senior Member

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  3. A.B.

    A.B. Senior Member

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    Conversion disorder is a fictitious disorder based on Freud's theories. Freud was a charlatan who privately admitted that he was unable to help his patients while publicly speaking of great successes.
     
  4. Martial

    Martial Senior Member

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    I do not know the relation to Frued too much, other then his psycho analytic techniques had a lot to do with supposed sexual repression and sometimes childhood trauma...

    Freud might have changed the diagnostic term of the dysregulating CNS system as Conversion from Hysteria but both of those are just names to better assest in treatment of symptoms. That does not mean that the symptoms and disorder occuring from emotional or physical dysregulation and the nervous system is any less real..

    There are countless over thousands of documented cases going all the way back to the times of hippocrates.. Also plenty of recent recorded medical journals on recent cases, also in that involving mass psychogenic illness where a multitude of people in the same social, cultural, or community based setting all develop similar symptoms of neurological dysregulation in response to an external stressor, with no organic cause to be backed up for.

    I know for myself I already had a hard enough time admitting to this possibility mainly due to it being something that mainly effected women and having a tough guy constitution, however I have always been pretty sensitive to in certain ways and based on the level of emotional detachment and other issues I was having it was no surprise that it occured.

    I am not in any way saying that CFS, LYME, and M.E. are all just manifastations of Conversion disorder.. I am just saying that having one of these conditions can produce physical neurological symptoms resulting from stress that normally would otherwise not happen if a person was in a perfect bill of health, and again using Conversion Disorder only specifically as a way to adress info on this specific manifastation of stress in the human physiology. There is also the possibility that a small subset of people could be dxed as having chronic illness like CFS, Lyme, and M.E. when in truth for some it could be the result of "conversion disorder" alone.. This does not mean that people do it on purpose or that they can just stop it at will power, it is simply a way that someone could have their own body try and regulate stress and conflict relief in the physical body from some kind of pre disposition or pre standing stressor.

    However it would be very helpful to know if this was a possibility because addressing the root of dysregulation and gaining the right therapy can help in ending symptoms and giving someone their life back. I myself had no idea how it was happening to me until my therapist pointed out that I was dissociating every feeling I felt very suddly, in his office he could even tell everytime I would normally experience different emotions I would instantly and automatically repress it or bring it in, without even realizing it the entire time, then after I would get the instant neurological pains, twitches, feelings of weak nerves etc.. Because I was in a state of very powerful emotions that were not being expressed it happened a bit more powerfully in my physical body, but I had no idea before how I could have possibly been even swallowing my emotions or causing a dsyregulation in my system consciously until someone else pointed it out.. And again sometimes in other cases it can happen because someone is already having symptoms of disease affecting the nervous system and strong emotions or other stress could result in a worsening of symptoms.. I also have a very, very high chance of having Lyme disease and already had very physical symptoms of herx reactions which is exclusive to lyme to which I am seeking treatment for as well. This could result as another way of why my neuro symptoms were so strong and intense.

    Having a dysregulation in the nervous system can also disconnect proper bloodfow and other bodily signaling due to lack of responsiveness, this could easily result in things like not enough blood flow to the head, arms, legs, digestive tract, etc.. It gave me eosphogal reflux where food would come back into my throat, really bad stomach nausea, issues with allergies to chemicals and feeling way more sensitive to different smells, lack of blood flow to my legs which resulted in a lot of hair loss, muscle pains and cramping from walking and really cold turning hands and feet, I also have very normal blood glucose levels, normal blood pressure levels, and very healthy cholosteral levels, my nerves just felt extremely sensitize and reactive to everything. Conversion issues can easily trigger POTS because of a nervous system doing things beyond its normal means, and creating blood flow abnormalities as a result. I had really bad issues with heightened heart rate and low blood pressure upon standing, gait, balance problems, spells of dizziness, and sometimes where it felt like my body just stopped moving and being responsive to what I wanted, but my heart rate jumping to over 170 beats per minute with absolutely no feeling of adrenaline or high blood pressure... It stopped after a bit of time and some b12 injections, as well as correcting ways in which I dissociated.. Whether it was from a b12 deficiency or a dysregulated CNS system I do not know.. I tried desperatly to get b12 level tests but no one offered it in my area until I found my current doctor who has to wait on insurance, I knew for myself that the longer you wait with neuro symptoms in a b12 deficency the more permenant damage can be. I promptly got myself shots and did some losenges as I did not want to risk it, but now as a result the test I will get my be skewed though if I was severely deficient then even with the shots I would show low total b12 levels..
     
    Last edited: Jan 28, 2014
  5. adreno

    adreno PR activist

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    Sounds like complete BS.
     
  6. Martial

    Martial Senior Member

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    jeez tough crowd lol

    I was just putting this info out there to help some people, just as looking into a cause of possibility.

    I certainly never would have believed it and would be extremely skeptical until I experienced it myself, and even then it was hard to admit that it could happen..

    It is not quackery based science either, or some kind of non societal accepted theory, this is something that is very well documented and visible in plenty of medical journals, and written as an official diagnosis in the DSM of the American Psychiatric Association, and IDC by the World Health Organization.
     
  7. A.B.

    A.B. Senior Member

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    Just because a belief is widespread (or believed by an authority figure) doesn't mean it's true. Psychiatric diagnoses in general are shockingly unscientific upon closer inspection. Nobody has demonstrated that such a thing as "conversion disorder" exists. It's based on the theories of a quack, who ascribed conversion disorder to some people that according to today's knowledge were clearly physically ill. Presumably conversion disorder (and its reinterpretation somatization disorder) persist because they are useful. To the patient, it gives a (temporary) illusion of having found an answer and thus some hope. To those bearing the costs of health care it's a way to limit costs. To the doctor, it's a way to "explain away" a difficult case. To the psychiatrist, it's a justification for treating a patient. However, being out of touch with reality ultimately leads to disaster.
     
    Last edited: Jan 29, 2014
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  8. Martial

    Martial Senior Member

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    That is true I am in no implying that based on scientific literature it is 100% true as well.. I am very open minded and can see it from both sides.. I do however think it is very possible to be true, and just because in Freuds case itcould have been skewed there are plenty other case histories as well, including very recent ones which showed absolutely no underlying organic cause.. A trigger of stress and a cure from psychological intervention... I wouldn't however completely disregard the possibility on either end. As if it is true, then in the case of the patient it is important to approach treatment from all possible avenues... Maybe in my own case it was all related to b12 and lyme and distress caused a rise in symptoms, I mean I have no way of ever truly knowing anything for sure either... Still though having an open mind and looking into all the angles is pretty vital if you really want to learn things.. Hell CFS and ME themselves are still viewed with a certain eye of scrutiny and misbelief by a portion of the medical community as well..
     
  9. Ren

    Ren .

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    The health-related concerns of forty-year-old Swedish mother-of-two Elisabeth Erlandsson were continually dismissed by her doctor, who even told her that she was acting childish (for seeking care and being concerned over a palpable growth).

    By the time Erlandsson received a real diagnosis, her cancer had spread and become serious enough that doctors now told her it was too severe to treat!

    Through donations from family, loved ones, and strangers, Erlandsson is receiving private treatment in Finland. Swedish health authorities, however,still refuse to provide any treatment whatsoever - stating that as death approaches they will provide some end-of-life care.

    Erlandsson says the State has given her a death sentence.

    http://www.aftonbladet.se/nyheter/article17240036.ab
    http://markbladet.se/?artikel=201311201445019293

    --------------------------------

    Question Authority!
     
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  10. Martial

    Martial Senior Member

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    I tried to read the article but it was all in german, wow so sad sorry to hear about that! Truly tragedies do happen so much and sometimes seemingly unnecessarily due to disbelief or pushing proper care and examination away...
     
  11. IreneF

    IreneF Senior Member

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    I'm sure there are plenty of people who have conversion disorder who are misdiagnosed as having CFS. The problem is that it's easy to misattribute *any* mysterious symptoms to "stress", in which case the underlying cause won't get treated. This is why we need a diagnostic test:
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0085387
     
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  12. Martial

    Martial Senior Member

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    Yes that would definitely help, though it seems you can't really source one factor for all cases of CFS, or ME either which is the problem.. People could be dealing with different kinds of toxicities, methylation issues, various infections or post viral issues, it seems from all the info I have learned that each case is really unique in its own and treatment is not a one size fit all which would be easier and much nicer to be the case.. I guess this is more an issue though of people not knowing the source and tossing everyone into the same dx because they can't find a proper underlying cause, so there is the case of M.E. which might have a main underlying issue, and then the challenge of mystery illness and putting people into a CFS category from all kinds of other strange issues or possible disease..

    I know for one example that I have read more about recently is chronic carbon monoxide exposure, where people suddenly and gradually get better as soon as they get out of the area giving them toxic levels of exposure, though a lot of these people end up with a dx of Chronic fatigue or M.E. and the like..
     
  13. taniaaust1

    taniaaust1 Senior Member

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    Reading your posts I find your case a worry...as after all your doctors didnt even do a simple B12 test!! (that is a very very basic test for someone with CFS symptoms) and just left you having to try to treat yourself.

    Post back when you are completely cured by whatever psychological treatment they are giving you for conversion disorder... it is only then I'll believe you probably did have this.

    Kind of sounds to me that your doctor is messing with your head. Ive seen ME/CFS people become convinced they are getting better or recovered after brain washing, thou it is veryevident to everyone around them they are still very sick. My sister for example.. doctors were telling her it was in her mind and then I'd hear from her all how she was getting better but then later finding out that someone had to carry her after picking her children up from school as she couldnt walk.. she wasnt doing her housework still either.. but yeah.. she'd keep telling me she was heaps better.

    sorry that's crap.. These people are really ill (not causing symptoms by their thinking which is what conversion disorder is) and have good reasons why they are getting "symptoms" even if science isnt up with things yet .. just like you wouldnt say someone who's got a broken leg and is limping has conversion disorder.

    thou maybe "you" do have something like conversion disorder with those symptoms. That is not ME/CFS.
     
    Last edited: Jan 29, 2014
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  14. justy

    justy Donate Advocate Demonstrate

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    Hi Martial, I do agree that every angle should be explored in the hope of finding a treatment that brings recovery or relief from symptoms.

    I am interested to know if you have improved at all after being treated for a conversion disorder (or component) I'm sorry if you have already supplied this information, but your posts are too long and words spaced too close for me to read all of them, without shortcircuiting my brain.

    I have to admit that the first time I was ill, about 19 years ago now, I gradually improved, and as I hadn't had a diagnosis and got better without any help apart from some anti depressants, and as I had extreme anxiety problems I also believed that M.E was possibly some kind of 'mind body connection issue'

    I felt pretty smug that I had recovered and could then exercise etc. I even secretly looked at others with M.E and thought they should just 'get on with it' and maybe they would get better if they addressed their 'psychological issues' as I had done with some counselling.

    The short version of this story is that I then spent 8 - 10 years with below par health, although I wasn't doing too badly. I had a couple of kids, although my stamina was very poor, I didn't tolerate stress and couldn't work, I THOUGHT I was better. I THOUGHT we could all think ourselves better.

    5 years ago I had avery severe crash after Measles, pneumonia and pleurisy all in a 6 month period. I slipped into the moderate/severe category and remain now, although slightly improved, mainly housebound and fairly wheelchair dependant for trips out, although I can physically walk, the PEM is so severe I would be stuffed for days afterwards, so I mainly use the chair.

    I realise now that I was always still ill with M.E. I don't believe it can be cured, I was lucky to have a long near remission, now i'm not so lucky and struggle everyday. I don't believe it is caused by any faulty beliefs or even a mind body connection. I think I am ill and I am not receiveing the testing, care and treatment I need.

    I have had once again severe anxiety and even developed agoraphobia. I do not believe these conditions are causing the M.E, but in fact are caused By it. I developed a fear of going out alone, because I feel so brain fogged, wobbly and out of it that in deed it is very uncomfortable to feel I must rely on my own meagre resources and avoid it as much as possible.

    BTW, last year I had a really good 4 weeks in the summer - I went out alone, with my kids every day for a week into the local town for a short trip and felt just fine - no anxiety. When the illness improves so does my emotional and mental health.

    I am also looking into Lyme etc testing and treatment.

    Good luck with yor search.
     
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  15. A.B.

    A.B. Senior Member

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    Failure to find an organic cause doesn't mean that no organic cause exists. Our knowledge and methods are imperfect, so it is to be expected that a number of conditions cannot presently be understood. Biomedical CFS research is severely underfunded, so it is no surprise that the condition is not understood.

    Could psychosomatic illness exist? Yes, but it has never been proven to exist, while organic cause of illness has been proven many times. There is simply no reason to believe in psychosomatic illness or having confidence in a psychiatric diagnosis. One should choose the organic explanation every time over the psychosomatic explanation.

    Also, no psychosomatic explanation is needed to explain a worsening of symptoms upon stress. If the worsening is such that it gets better over time, then as long as you do no harm, you'll eventually get better no matter what you do, although a person that has done psychotherapy will likely attribute the improvement to the therapy rather than the body's ability to heal itself.
     
  16. adreno

    adreno PR activist

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    Absence of evidence is not evidence of absence.
     
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  17. alex3619

    alex3619 Senior Member

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    There is nothing documented as concrete. Nothing. Conversion disorder is one of a huge number of claims with no objective medical basis. Its not much better than an argument of demonic possession.

    Conversion disorder, like all psychogenic illnesses, is an unproven hypothetical disease. Because of a severe absence of testable predictions, its not a testable disease. That makes it nonscience, as defined by Karl Popper.

    Treating nonscience as science, pretending its science, qualifies as pseudoscience. Pseudoscience often has lots of publications supporting it. It particularly relies on patient testimonials.

    Doctors practicing pseudoscience are not practicing ethical medicine. In my view it fits the definition of quackery. Its just accepted institutionalized quackery, relying on dogma and bogus papers and studies for evidence.

    Let me give an example of the testimonial game. Treat 1000 patients. 100 improve or get better, possibly by chance, possibly by other factors. Claim these 100 were from the treatment. Recruit or convince 10 as disciples, to go out and spread the word. These 10 are typically believers. Is this science? Or totally bogus?

    Anecdotal evidence means nothing in science. Anecdotal evidence can show that there is something worth investigating. The proof is in the investigation, the valid, replicated and peer reviewed studies in which the hypothesis not only has supporting evidence, but has been tested.

    No psychogenic disorder has a valid claim to be backed by science. None has been proven right. Dozens, and possibly hundreds of such claims, including diabetes, lupus, rheumatoid arthritis and gastric ulcers, have been disproved. Track history: ZERO for, very many against.

    That does not mean that people cannot be helped by a good therapist, or various psychiatric treatments, in some cases. It means the evidence base is lacking, what evidence there is has been tainted, and so none of it is evidence based medicine even if they have a Cochrane review on the subject.

    The diagnosis is a problem. Treating patients based on that diagnosis is unethical. It does not mean that they cannot help, it means they are helping or not helping or harming under a false and unscientific diagnosis.

    Freud was caught out fabricating case histories. Charcot, the one who defined hysteria and taught Freud, was not proven to be fabricating evidence, but we know some of his followers fabricated evidence which Charcot then used. Did he know? That is not in the history, and we may never know if Charcot was a fraud. Charcot's main claim to fame was as one of the founders of modern neurology anyway. His role in defining hysteria has, in my view, done much harm to every generation that believed it.

    Many of us here, if not most, will be extremely sceptical of any claim of psychogenic illness. I highly recommend the following book: http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952/ref=sr_1_1?s=books&ie=UTF8&qid=1391000756&sr=1-1&keywords=authors of our own misfortune

    Its good if someone finds benefit, from any treatment. Its just that we have no reason to consider the explanation valid, and every reason to reject it.
     
    Last edited: Jan 29, 2014
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  18. alex3619

    alex3619 Senior Member

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    @Ren "Question Authority!"

    Its a start. I would go one further, revealing my philosophical stance again: If its important, question everything. The only way to improve our journey toward real understanding is to question everything that is important (nobody has time to question all the unimportant things). This particularly applies to authoritative dogma, but it even applies to the things we think are true, most especially if we think they are true.

    If you believe in something, you should be willing to test it if its important.
    If you don't believe, and its important, then by subjecting it to questions you are testing it.

    This is the foundation of pancritical rationalism, which broadens critical rationalism to each and every subject, not just science.
     
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  19. adreno

    adreno PR activist

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  20. alex3619

    alex3619 Senior Member

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    This runs close to the psychogenic fallacy, a informal fallacy which has been published a number of times, and is often discussed without referring to the fact its been rigorously defined.

    Is it possible that some cases of psychogenic illness, and conversion disorder are valid? Yes. Is it likely? No. Is there any objective unequivocal evidence? No.

    NOBODY can show "absolutely no underlying organic cause." That's a logical fallacy. It cannot be done. Its part of the deception that psychogenic proponents play. Instead, let me turn it around. Is there no physical basis for diabetes? How about Lupus, MS, Lyme disease (referring to the pathogenic illness, not "post"-Lyme issues), gastric ulcers, etc. These claims have been made again and again, and in the science have proven to be false.

    In individuals its more problematic. Doctors often claim no tests are abnormal in CFS. This is a false claim. What some say, more accurately, is that when we ran a particularly series of standard tests we found nothing that clearly causes the problem. What about non-standard tests? What about tests that have not even been invented yet, or for disorders that have yet to be identified? There are millions of potential tests, but only a few hundred are commercialized and widely used.

    Post viral fatigue, as normally experienced, lasts weeks to months, sometimes a few years, and very rarely five years. Doctors see it all the time. These patients have chronic fatigue, and would even qualify for an Oxford diagnosis of CFS. Yet they do not have the same condition that roughly 10% (it varies study by study and pathogen by pathogen) of people with certain infections get, including EBV. That typically does not resolve, not in one year, nor ten. It can worsen or improve however.
     
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