A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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The doctor tells me that I do not have cfs

Discussion in 'General ME/CFS Discussion' started by eric_gladiator, Oct 31, 2017.

  1. eric_gladiator

    eric_gladiator Senior Member

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    until now I had only experienced fatigue that limited me but in the last months after taking duloxetine I was shot symptoms that I had never noticed as pots, noises in the ears, tiredness out of the ordinary tumbandome in bed ...
    Until now my diagnosis was the closest to a cfs but now that I am with another natural doctor I have done an immunological study and it tells me that I can not have cfs, my fatigue has to be caused by the epstein bar virus since the t8 they are fine. I really do not understand anything and I do not know if I'm going crazy because I've had all kinds of typical cfs symptoms. I was recommended to take this 2LEBV but I am totally unaware of its effectiveness or if it is going to make it worse, I am not in a position to play with my health, I appreciate it more than ever and everything that entails a risk of deterioration almost that I stay better how I am
     
  2. Cheesus

    Cheesus Senior Member

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    There is no diagnostic marker for ME, so for your doctor to say you cannot have ME because of the results of a blood test is wrong.
     
  3. A.B.

    A.B. Senior Member

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    Sounds as if

    1. Duloxetine is causing additional symptoms.
    2. Your doctor is incompetent, as seen by (a) believing a CFS diagnosis is tied to abnormalities in CD8+ T cells (b) prescribing the homeopathic remedy 2LEBV

    (your post is a bit hard to decipher so maybe I'm misunderstanding)
     
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  4. Murph

    Murph :)

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    Do you get post extertional malaise, where you feel disproportionately sick and/or tired after exercise, activity or cognitive strain? that's really the key.
     
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  5. Alvin2

    Alvin2 If humans were rational...

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    It would solve a lot of problems (CBT/GET anybody?) if T8 was a proven biomarker. It is not. Your doc does not know what they are talking about. Sounds like this doc is not an MD so the misdiagnosis can't cost you any disability supports you might be getting. That said we don't know if you have ME/CFS, do you fit the Canadian Consensus Criteria or other recognized criteria?
     
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  6. eric_gladiator

    eric_gladiator Senior Member

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    @Cheesus

    I thought the same. although this doctor has good prestige and has seen many people with cfs


    @A.B. Duloxetine has not taken it for months. Just take it two days and change my life completely, it's something I'll never understand


    Finally, do you think it is throwing money this medication?


    @Murph
    :)

    I feel very tired all day, I'm running out of work ... exercise and let's talk, that's impossible to do. A few months ago the thing was different and I could do the exercise although it tired me much more than when I was well. my symptoms come from some biochemical poisoning by antidepressants


    I discussed it with the doctor and he insists that I do not, that I can not have cfs even if I have factors that may be relevant.




    @Alvin2

    I feel a lot of tiredness, apart from musculoskeletal pain, weakness, burning in my legs, dizziness ...
     
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  7. Cheesus

    Cheesus Senior Member

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    A doctor is really only as good as their evidence. T8 cells are not a diagnostic marker.
     
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  8. Alvin2

    Alvin2 If humans were rational...

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    That does not change the fact there is no proven biomarker. We desperately want one, it would destroy the lies of the its not a real disease lobby and would help direct research towards a cure but alas it does not exist yet.
    Unfortunately this does not mean ME/CFS, it could be anything from a brain tumour to immune malfunction to fibromyalgia to many other possibilities :(
    You need to see a doc who can rule out other possibilities, as someone mentioned one rather defining characteristic is do you have PEM?
    If you have something else it may be treatable, or it may get worse without treatment when it would otherwise could have been
     
    Last edited: Oct 31, 2017
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  9. eric_gladiator

    eric_gladiator Senior Member

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    @Cheesus
    I do not know why to tell me that

    @Alvin2


    I have discarded everything there is to discard, at least everything a doctor can look at you and my last resort has been to visit a natural
     
  10. Alvin2

    Alvin2 If humans were rational...

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    I hate to sound like a broken record but that is not a biomarker no matter what this doc says. If natural medicine had a cure or highly effective treatment we would all be on it already. Right now we have no definitive test and this is a diagnosis of exclusion. Just because one doctor says something does not make it true. There is no doc anywhere that is infallible, except on TV.
    I understand your frustrated, but what is the point here, if you believe this natural doc then you need to find the real cause, if you have ME/CFS then there is no allopathic or naturopathic medicine that provides more then minor relief.
     
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  11. notmyself

    notmyself Senior Member

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    is it also possible that duloxetine messed up your brain neurotrasmitors wich can cause all sorts of symptoms,people are unaware how strong and dangerous these meds are..as for the MEdiagnose,probably the absence /presence of PEM will indicate if you have ME or something else..
     
  12. Alvin2

    Alvin2 If humans were rational...

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    This is not farfetched
     
  13. eric_gladiator

    eric_gladiator Senior Member

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    @notmyself

    @Alvin2

    they are useless, they have totally fucked me up. In the case of not having taken anything right now I would still be in an acceptable state that allowed me to do everything. But all this is weird, I do not know of anyone who gets so bad taking an antidepressant only 2 days, in theory it takes a week or more to get to the blood, does not it?
     
  14. Alvin2

    Alvin2 If humans were rational...

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    It does not, it raises serotonin levels within hours of the first dose. The antidepressant effect that takes weeks to a few months is believed to be a compensatory effect of the brain to get around how the chemical affects (disrupts) brain function, the idea is for those it helps its making you apathetic enough to make the depression go away.
    Its rare but some people have massive personality changes or psychotic effect or even suicidalness from the drug. Of course there is billions of dollars in profit involved so the companies deny this ever happens but there are enough reports to have forced some labeling changes and some doctor awareness (some). They are also addictive to a percent of users, the exact percent is not studied (what company without force will spend money to destroy their cash cow).
     
    Last edited: Nov 1, 2017
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  15. alex3619

    alex3619 Senior Member

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    Antidepressants like SSRIs take about four hours to reach maximum effect. Its the symptoms that take longer to resolve. I almost died from one single antidepressant med, at low dosage. The very first time I took it. There are no guarantees.
     
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  16. eric_gladiator

    eric_gladiator Senior Member

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    @Alvin2

    then the anti-depressant could have done me that permanent havoc, counting on that I already had to have something that did not come to light. Correct, before getting sick I took amitriptyline and it had all those effects that you describe, desire of suicide, psychosis, overwhelming fatigue, apathy ... I felt that my head was going to explode at any moment. The doctor denied it and I He said that it was normal, therefore, to continue with him until later he fell ill and he always blamed the medication
     
  17. eric_gladiator

    eric_gladiator Senior Member

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    @alex3619


    What do you mean by almost dying? Did those effects remain permanently?
     
  18. notmyself

    notmyself Senior Member

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    it's unlikely that antidepressants will cause permanent damage..they are nasty stuff,but i will not say the damage is permanent,if there is one :)
     
  19. alex3619

    alex3619 Senior Member

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    I passed out and woke up four days later. It only took seconds to pass out, much less than a minute. I was groggy and sleeping all the time for several days more. If that had happened in summer I would have died of dehydration, given that I often live in 40-50C temperatures in summer. Also had I taken a regular dose (I only took a scraping off the side of a minimum dose tablet of mirtazepine) then I might have been unconscious far longer. I also have sleep related disorders that might kill me if I cannot wake up.

    People with ME often have abnormal responses to drugs. Now that we know about the hypometabolic issues this makes a lot more sense. We also know that some enzyme variants (and cofactor issues) might under or over activate drugs, just as they might result in lower or higher drug clearance rates.

    I appear to have fully recovered. I cannot be sure however.
     
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  20. alex3619

    alex3619 Senior Member

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    Cheney has reported, and this is not a formal study, that his long term patients on antidepressants have signs of increased brain damage compared to his other patients with ME. I do not have details. I do not know if this is correct.
     

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