Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Poll on depression and interferon-gamma

Discussion in 'General ME/CFS Discussion' started by MeSci, Mar 8, 2015.

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Are you, or have you been depressed?

  1. In the first 3 years of ME - have been ill for less than 3 years

    0 vote(s)
    0.0%
  2. Not in the first 3 years - have been ill for less than 3 years

    5 vote(s)
    19.2%
  3. In the first 3 years but not later in the illness

    3 vote(s)
    11.5%
  4. In the first 3 years and also later in the illness

    8 vote(s)
    30.8%
  5. Not in the first 3 years or later in the illness

    7 vote(s)
    26.9%
  6. Not in the first 3 years but only later in the illnes

    3 vote(s)
    11.5%
  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    This is an attempt to make links between @Valentijn's depression poll and the recent cytokine study by Hornig et al., to see if there could be a link between gamma-interferon and the depression experienced by some ME sufferers.

    Please only answer if you have ME/CFS/SEID, and use your best estimates for how long you have been ill (I know it can be difficult to figure out).

    I'd also be interested to learn if anyone has actually had blood or CSF (or other) tests for gamma-interferon, kynurenine and/or serotonin, or tried treating levels of one or more of these, and whether or not these corresponded with depression or lack of it.

    I hope I have covered all the options - I'm sure someone will tell me if I haven't!

    PS Hope I haven't put people off coming on here due to the title - I realise that it may look at first glance as though the poll is only for people who know their interferon levels or are taking interferon - it isn't! I was so busy trying to get the poll right that maybe I ballsed up on the title.

    (Ballsup = cockup = messup etc. :D)
     
    Last edited: Mar 9, 2015
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  2. ukxmrv

    ukxmrv Senior Member

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    I have been ill for 30 years and not depressed in any part if it.

    Had a blood test for serotonin levels in around 2001. This was done through a USA doctor and lab. My levels were described as normal.

    It may be useful to add that I was prescribed antidepressants within the first 3 years of having ME and again after about 20 years. The first time I was told that antidepressants had an anti-viral effect, the second was supposedly for pain and sleep. In both cases I had adverse reactions that got worse over time rather than better.

    Just mentioning that in case it strikes a chord with anyone or any research.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks, @ukxmrv. I tried fluoxetine during the first 3 years and became ultra-jittery and insomniac. I had to come off it very quickly. I can't be sure that it didn't have adverse long-term effects. I went from being depressed to suicidal not long after, and I know I am not alone in having this happen after an SSRI.

    Never again.
     
  4. Ema

    Ema Senior Member

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  5. Mij

    Mij Senior Member

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    I only took/take small dose trazodone for sleep and it works very well for me.

    One note though, there was only one period (for 3 weeks) when I could not tolerate trazodone, even a spec during a particular viral infection. It put me to sleep but within 2 minutes of waking and standing up I felt faint and had to stay lying down until it wore off. My doctor was puzzled by this, I kept calling his office every morning because it got very scary at one point.
     
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  6. JaimeS

    JaimeS Senior Member

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    All my neurohormone levels are normal except serotonin. For those of you who were told they were normal, beware: they're often looking for sarcoid tumors, which means they're only concerned with whether your serotonin values are HIGH. Mine are about a third of the lowest acceptable value and no one made a peep because it wasn't 'flagged'.

    Nonetheless, as discussed in the previous poll, I do not feel depressed. Levels that low should be causing all kinds of problems, and maybe they are - but not with my mental state.

    When a doc first said, 'perhaps you might be depressed' - what we ALL HEAR, for heaven's SAKE - I was like, 'sure... I'll try 5-HTP and if it helps me at all, perhaps he's right and I'll consider Wellbutrin or some such. And if it doesn't, I'll tell him I tried and this will help prove depression is not the issue here.'

    Oh.

    My.

    Word.

    At the second (low, low!) dose, I had a full-on serotonin syndrome attack: fever, endlessly looping thoughts, heart palpitations, muscle twitching, and all capped off with something I can only call a mild stroke, where half of my face sank. Not to scare the beejesus out of you all, but WOW.

    5-HTP is generally benign - I mean, as an herbalist, I took it once just to see its effects, before I was ill. Certainly no such thing happened at the time.

    I went to an herbalist later on in hopes they could help me out. I said: "nothing serotinergic. REALLY, nothing serotinergic, I mean it," and described what had happened the last time. They agreed, and prepared a multi-herb formula.

    SAME THING. Looked up herbs later and guess what? The main component was serotinergic! Not rumored to be, double-blind, placebo-controlled tested to be. UGH.

    So one of three things:
    1) My serotonin receptors are upregulated liek WHOA.
    2) The sensitivity of each individual receptor is upregulated liek WHOA.
    3) There are autoantibodies floating around killing serotonin, and an uptick in serotonin causes an inflammation cascade, fever, etc, like being suddenly injected with a neurotoxic pathogen.

    There is evidence of upregulation of serotonin receptors, and also evidence of autoimmunity to serotonin in ME/CFS.

    So there is my two (ten, twenty?) cents.

    -J

    Edit:
    I'm one of those 'slow starters', so it's hard to tell exactly when I started having symptoms. However, symptoms markedly increased four summers ago after an injury, so I've been sick for 3.5 yrs... I'm right on that tilting point.
     
    Last edited: Mar 9, 2015
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Interesting paper. My brain is too tired to read it right through, but I found the full text here. It's a short paper. I couldn't find any mention of serotonin - the study talked of prolactin release in response to administration of buspirone, which acts on 5-HTP receptors. The patients were diagnosed with postviral fatigue syndrome. I couldn't find any reference to how long they had been ill. There is other interesting stuff like:
    and stuff about muscle and mitochondrial abnormalities. The study clearly differentiated between healthy subjects, depressed subjects and people with PVFS.

    And it's from 1992! Amazing that we are still fighting the psychoquacks...
     
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  8. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    @MeSci
    I have been thinking about how to answer your poll question since I saw this thread a couple of days ago, and I just don't know what my answer is.
    I am depressed now and have been for many years. I simply can't remember if I was depressed in the first 3 or not. I have had ME for 15 years now.

    I know my first dr thought I was and put me on antidepressents - which I took for less than a week before flushing down the loo (nice to remember that back then I was at times a badly behaved teenager despite being so ill!!)

    I also know I was depressed for a while before I admitted it and asked for help, but my memory sucks and I simply don't know.

    sorry not to be albe to give an answer to your poll.
     
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  9. ahimsa

    ahimsa Sick since 1990

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    I'm having a bad "brain fog" day so I had trouble parsing the different options. I was looking for a "Never" answer. (got sick in 1990, never depressed)

    But I finally figured out (I think) that the 5th answer = Never, right? Anyway, that's the one I checked.
    @ukxmrv, thanks for including your story. It reminded me of one of my own experiences.

    I was prescribed a low dose antidepressant once (Nortriptyline, brand name Pamelor) to see if it would help. It was sometime during the first few years of my illness, before I was diagnosed. I believe the idea was that it would help reduce pain and might also improve sleep. I only lasted 2 weeks before I stopped the drug.

    I could not take the bad side effects--fatigue, lethargy, no desire to do anything, dampening of feelings, etc. I told my doctor that if the drug weren't called an anti-depressant then I would swear that the drug itself was making me feel depressed. As I recall (faulty memory?), she said that depression was a possible side effect. Huh?

    How does an anti-depressant cause depression? Clearly I don't understand the biochemistry behind these drugs.

    At any rate, as the drug wore off it was amazing how happy I felt again. Like I had not even realized how down that drug was making me feel. I still had all the physical symptoms but suddenly the birds were singing, the sun was shining, etc. I joked to my husband that maybe I should take the drug once a year just because it felt so good to stop! You know, like the old joke about hitting your head against the wall. :rolleyes:
     
    Last edited: Mar 11, 2015
  10. A.B.

    A.B. Senior Member

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    Possibly due to antidepressant induced hypothyroidism. I have the suspicion that many antidepressants are meant for people with agitated, intense dark emotions. Under these circumstances the sedative effect might be welcome and pleasant. Giving them to someone who is already exhausted isn't good.

    Relationship between psychotropic drugs and thyroid function: a review.

    At least that's how I try to make sense of it all. Maybe it just doesn't make any sense to begin with.
     
    Last edited: Mar 10, 2015
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  11. Sidereal

    Sidereal Senior Member

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    No one else does either. ;)
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Yes - that's the one.
    OMG - you have described exactly what I felt when I stopped a low dose of this drug for IBS. As you can see, one of the ingredients is nortriptyline. I have come across other ME people who have become suicidal on Motival. It caused me to feel like a zombie, and also caused numbness in my tongue, affecting speech and also swallowing, and numb hands. I think that by the time I stopped it I had also started fluoxetine (Prozac) for depression, but became even more agitated than my anxiety already made me, and even less able to sleep. I came off both. At first I had the 'coming alive' feeling you describe, then my depression progressed to suicidal ideation.

    There were many reports of suicidal ideation in teenagers taking another SSRI - Seroxat/Paxil/paroxetine.

    Crazy - isn't it?

    BTW before getting ME I took a much higher dose of Motival with no problems.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Please don't apologise! Maybe your memory will be jogged by something. If not, don't worry about it. I think I only remember due to events at the time, and the severity of my own depression in the early years.
     
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  14. Richie

    Richie Senior Member

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    30 years fatigue and fatigability, exertion reaction/payback + plenty of CC/ICC consistent symptoms with fluctuation and variation from 1985. No diagnosed mental or physical illness till 1998.
    High gamma interferon. high tnf alpha, low urinary major NT's, except one occasion of very high, I think latter due to a strange drug reaction to heparin (took a course twice, high twice at beginning of course)
    High quinolinic acid (off-shoot of kynenurine pathway)

    Reactive depression /despair/grief/worry etc 1991
    Reactive anxiety/arousal/agitation (not panic) used the agitated energy to live in overdrive for years until docs would diagnose.
    Adaptive depression 1999-2007 after overdrive -i.e brain said "you're not living like that any more son".

    Some conflict in symptoms - fatigue and agitation, can counter each other, but neuromuscular symptoms of fatigue remain always.


    Depressive symptoms very distinct from general low aenergyfatigue and neuromuscular fatigue.
    When on heparin high good mood and energy, but alternating with feeling of drunk/weakness, very heavy sleep and neurouscular fatigue symptoms increased.

    Question for me is, if I had repeat high gamma interferon post 2000, but first had problems in 1985, then do I have the same "ME" as those from the recent work showing lowered if gamma a little while into the illlness/
     
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  15. Rand56

    Rand56 Senior Member

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    These were the exact same symptoms I had on Prozac when I tried it many years ago for my MDD. It was so extreme I told my psyche doc to get me off of it. She wanted me to hang in there and continue taking it because she said my symptoms were letting me know it was starting to work. If I would have taken her advice, I may not even be here today. Prozac was absolutely the worst AD I ever tried.
     
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  16. amaru7

    amaru7 Senior Member

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    For what it's worth I tried many different AD like sertralin, Prozac, Welbutrin and none helped at all with my depression.
    The other thing is that my neurohormones were shown in urinary testing to be low. Even precursors like 5-HTP hat no effect at all to me. Unfortunately reuptake inhibitors don't do anything for me and there is no legal SSRA anymore on the market like MDMA
     
  17. Misfit Toy

    Misfit Toy Senior Member

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    I had Epstein-Barr virus and was extremely tired in the beginning and after about eight months of severe fatigue I became depressed. I was 18 years old and had to quit college from the Epstein-Barr. I didn't understand what was happening to me so depression set in.

    I felt like my life turned upside down and then I went from sleeping constantly to not sleeping and feeling like I was going crazy. I feel like my symptoms in the beginning were major brain symptoms.

    The Epstein-Barr had stopped my periods, caused my adrenal glands to secrete an overabundance of Cortisol and my thyroid wasn't working. This seemed to bring on even more brain symptoms and feeling of depression.

    I went on Tofranil. It helped with sleep. But I started having swollen glands, muscle twitching and thrush in my mouth. The depression continued as I couldn't keep up with my life. I lost my scholarship to college and most of my high school friends. My BF of 3 years also kept breaking up with me due to my new illness. Yup, I was down.

    Over the years I suffer with pain and lack of sleep, which I'm sure is what brought on a lot of the depression. Eight surgeries for endometriosis, partial reconstruction on my pelvis, back surgery, and a diagnosis of interstitial cystitis kept bringing on feelings of depression.

    I would say that over the years I've had a steady feeling of depression due to this illness and all the new diagnosises I keep receiving along with the death of my father and my sister.

    Because I believe this illness is an HPA axis issue that affects the brain, for me I believe depression has been synonymous with this illness.

    Antidepressants have never helped me or have made me sicker. When I was on amitriptyline, my serotonin was skyhigh and I was super depressed with a ton of serotonin.

    You would think that would be the opposite but I had so much serotonin and I was very depressed.

    I don't know what interferon gamma is. I do know that I have high levels of inflammation.

    There are days when I'm not so depressed pending on energy and then there are days where I'm completely exhausted and depressed. It's like the fatigue and weakness just takes over my whole body and brain. This is very hard because I can't say that I'm truly depressed if one day I'm feeling okay (slightly better or energy) and laughing and perhaps the next day I'm not because I feel horrible from this condition.

    I know that since 2009 when I went into perimenopause and my periods were all over and I started having hot flashes and night sweats and being completely side railed from this, the depression was worse than it's ever been. My periods wreak havoc with my mood and migraines have come on. This puts me in bed for days with unbearable pain and nausea.

    Mine has never been just a case of chronic fatigue syndrome/ME but also other conditions so there's a lot to add to the mix. Having more than just chronic fatigue syndrome has caused more feelings of sadness because I don't want anymore diagnosises.
     
    Last edited: Mar 31, 2015
  18. Richie

    Richie Senior Member

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    I still think that immune activation in the presence of a pathogen could be producing both ME consistent and depression consistent symptoms in some patients by e.g. TNF alpha "burning out" neurons, exotoxicity from quinolinate and serotonin depletion. Why not?
    This view is consistent with the idea that many of us have one or other ongoing infection, which many of our champions continue to claim
    No one should feel "second class" ME for having depresssion or be silenced for thinking there is a biological link.
     
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I came off Prozac after a very short time - really couldn't cope with it. Did you go through the supposed 'settling-in period'? I couldn't endure it long enough to see if that wore off.
     
  20. Rand56

    Rand56 Senior Member

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    Same here. I did not stay on it very long.
     

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