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Odd reactions to stimulants post-illness

Discussion in 'Hypersensitivity and Intolerance' started by debored13, Oct 3, 2018.

  1. debored13

    debored13 Senior Member

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    I used to do pretty well on Ritalin before I got sick, and after I got sick (my trigger was lyme) there was a change in how I reacted to it, not overnight, but it eventually reached a state of intolerance that was a stark difference to how I used to react to it.

    I was originally prescribed ritalin for ADD, and I got the characteristic "paradoxical relaxation" at the right dose with it, where I felt calmer, but also more organized cognition. Sometimes I would get overstimulated if I mixed it with coffee and tried to chase the effect (which really was more of a consequence of workload than anything), but overall it was very tolerable and I still slept decently.


    After I got sick I started not being able to tolerate /get benefit from Ritalin in general. You would think stimulants would help fatigue but not in this case. I was at school during the first year I was sick (I was more mildly sick, gradually getting worse at the time), and I would still try and push through the side effects of ritalin for the more cognitively demanding tasks, like coding and writing my final paper.

    The effects started to be extreme adrenergic reactions. I know this seems consistent with stimulant usage in general, but this was way more extreme. Like the dopamine/norepinephrine ratio had shifted unfavorably. I would be able to tolerate this barely at first, and it would mean things like decreased sleep and feeling on edge all the time, but gradually this became more extreme, and I would not be able to sleep for 24 hours after a dose of ritalin that barely even helped me concentrate. Several times that I took ritalin I would become so adrenaline soaked that I was literally shivering--people I was studying with asked me if I was alright. But even at these doses I didn't experience the same cognitive benefits I used to.
    This is why I bring up the dopamine/norepinephrine ratio.

    Based on my experience with medication, I think that contrary to a classic, simplified view of stimulation and alertness being excitation that is opposite to inhibition, a lot of stimulants can be inhibitory, and this may mean at an ideal dose range they don't release excessive norepinephrine (also this has to do with the entianomers but also must have to do with a number of conditions).

    I started speculating this based on finding @Iritu1021 's blog post on histamine (http://www.chronicfatiguediagnosis.com/2018/02/24/histamine-the-song-of-ice-and-fire/), in which she mentions sort of similar reactions to methylphenidate. However, I'm not sure if she had the similar experience I did of favorable experiences pre-illness and unfavorable after.

    Anyway, the only way I could use ritalin was with also taking trazodone to sleep. this is unsurprisng as trazodone is a powerful sleeping medication, but, like a lot of older gen antidepressants, has antihistaminic effects too, so I speculate about its role in inhibition.



    I could go on and on about drug sensitivities induced by CFS, and I think that could possibly reveal something with enough theory and speculation, but I'll stick with ritalin for now.
     
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  2. S-VV

    S-VV Senior Member

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    How were you treated for lyme?
     
  3. debored13

    debored13 Senior Member

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    I was treated with doxycycline when I got it, for three weeks
     
  4. S-VV

    S-VV Senior Member

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    Did you get the EM rash, or was it tested by antibodies? Also, did you noticed any change in symptoms when you took the doxy?
     
  5. debored13

    debored13 Senior Member

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    I had a classic case of Lyme. Rash, couple days of fever, then a positive on both tests.

    Yeah, totally. The antibiotics initially seemed to clear it right up. The return of my symptoms was baffling and not immediate. Sort of delayed by a month. I thought I had gotten lyme again...

    I didn't even know what "chronic lyme" was at the time so it def. wasn't a case of googling general symptoms to see if they matched up with lyme.


    As far as the whole debate over chronic lyme, I think it's interesting. There are definitely some decent studies of antibiotic treatment in post treatment lyme, and there are lots of studies showing possible survival of borrelia in cyst form. idk about the quality of these studies, but it's not as cut and dry as the FDA would have u believe.

    And yet, I have taken lots of antibiotics over the couple of years, since that initial infection and treatment, and I am still sick. I lean more toward lyme trigering metabolic disease than it being a lingering infection. I could be wrong but I doubt it. I have heard one anecdote of complete recovery with chronic lyme antibiotic treatment, but only one! No others. people seem to go to doctors for this for years without result.

    Also, the other benefit of treating this as a metabolic disease, is metabolism and immunity are connected... so even if you do have a dormant or active infection, and abx don't work, maybe treating metabolism or fixing your immunity will help better anyway.
     
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  6. S-VV

    S-VV Senior Member

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    So the timeline is Lyme=> Doxy for 21 days => 1 month later, symptoms return.

    A few things come to mind. First, chronic Lyme, although not primary cause of CFS, is very real. I have a skin complication (Morgellons), that in 2016 was linked to spitochaetal infiltration of the skin, and it doesn't go away without strong oxidative therapy.

    Doxy can alter the microbiome in profound ways, both for good and bad. In general, it disrupts bacterial homeostasis. Good if you have dysbiosis, bad otherwise.

    You could do a uBiome to check the status of the microbiome. Otherwise, maybe a Lyme IgM to check persistance
     
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  7. debored13

    debored13 Senior Member

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    I don't really have the money for any tests that aren't covered by insurance at this point.

    Anyway, like I said, at this point in my treatment, I'm trying to simplify things to avoid decision fatigue. The tests that are available for lyme would be too equivocal to rule anything out. I suppose I could get a spinal tap easily, but that might wear me out when I'm already so sick.

    And would it really even rule anything out? According to some theories blood tests or spinal fluid can never be fully reliable because spirochetes can hide in peripheral tissue? So then I could just go down a rabbit hole of tests which wouldn't tell me anything actionable. I've already tried a few antibiotics courses since then, which didn't really help. I have a doctor that would be willing to write any antibiotic (although insurance wouldn't cover IV abx) if I really wanted to, but my experience has not been good on them. So I figure, based on all the theory and my experience, that directly treating Schrodinger's Spirochete is not going to help me. Maybe it does exist but I think metabolic and immune response are the treatable things, and that CFS is a relatively homogenous metabolic response to heterogeneous triggers.
     
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  8. debored13

    debored13 Senior Member

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    well the tl is not quite that simple. my symptoms kind of shifted, and got worse, over the year that i was in school trying to finish and pushing through and exercising and doing all the theings youre not supposed to do. around last fall I got a number of what seemed like relatively severe viral infections that seemed to push me to an even worse state. So it seems like a series of stressors, but all triggered by Lyme as the first cause. Maybe I never would've fully had CFS if I had initially rested better after getting lyme
     
  9. debored13

    debored13 Senior Member

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    Anyway has anybody experienced a similar change in reactivity to stimulants?
     
  10. outdamnspot

    outdamnspot Senior Member

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    Yeah, I had this happen to me. I was actually only diagnosed with inattentive ADHD after my CFS presumably started (it was classified as severe depression at the time). I was put on Ritalin LA, which caused severe agitation and anxiety. Dexedrine worked amazingly for about two weeks -- I read more books during that period than I had in the past 4 years -- and after that (once my 'adrenals' adapted, for lack of a more scientific term) it would just cause me to crash and induce brain fog. Never experiencing remission from or being able to treat my ADHD has actually been one of the most heartbreaking aspects of CFS for me, because I spent so long fighting for it to be diagnosed.
     
  11. Wolfcub

    Wolfcub Senior Member

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    I have never experienced ritalin @debored13
    Or any other drugs.
    The only stimulants I know are caffeine, (alcohol? -I always thought alcohol was a nervous system "depressant" but some call it a "stimulant"....I don't know!)

    But what I do know is I often can't tolerate caffeine in coffee, even in small doses, well any more which happened suddenly this year. Some days it's okay. Other days it makes tremors very bad. Same with alcohol. Sometimes I feel drunk if I have even half a glass of wine or beer! Not a pleasant feeling. Just magnified results with both.
    What causes them to have magnified effects on me I don't know.
    Maybe the ritalin is having a magnified/or paradoxical effect on you? (paradoxical meaning it is increasing the symptoms it's meant to alleviate.)
     
  12. taniaaust1

    taniaaust1 Senior Member

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    That makes sense that it may probably shift as ME/CFS can alter ones norepinephrine levels. My levels go way high due to this illness and due to the coexisting POTS it has given me. I take a drug to try to balance the norepinephrine and stop it spiking too high due to all this.

    Then I suppose there may be some confusion with symptom overlap with what you have no and ME/CFS eg ME/CFS can make one feel very wired if one gets overtired and cause will affect concentration too.
     
  13. Iritu1021

    Iritu1021 Breaking Through The Fog

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    @debored13
    My experience with stimulants was pretty similar to yours. At first it was fantastic, but then I had to take them just to be able to function, and then I couldn't live with them anymore but also couldn't live without them, and I ended up going through a really bad depression when I finally quite them, with a few days that were downright catatonic (I felt "locked in" and unable to move or to speak).

    Not sure if you've read it or not, but I wrote more about my stimulant experience here, in regard to the relationship between dopamine and thyroid hormone and my COMT Met/Met allele. Lately, I've been really thinking more and more that I have something like bipolar 2 that gets triggered by stress, stimulants, antidepressants, and T3. For the most part, my manias are just states of extreme unpleasant agitation (known as "mixed manic states") similar to what you describe.

    I do have a lot of alleles for bipolar but I'm definitely not the classic case. I think I was initially misdiagnosed because of that with mild unipolar depression and ADHD. Now I know that bipolarity just like sexuality is a spectrum, a lot of people are not fully bipolar or unipolar. I do have a lot of other alleles that are associated with bipolar, not just COMT Met/Met.

    Ritalin also increases serotonin by the way, just to a lesser degree than NE and DA.
     
    Last edited: Oct 4, 2018
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  14. Iritu1021

    Iritu1021 Breaking Through The Fog

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    Last edited: Oct 4, 2018
  15. debored13

    debored13 Senior Member

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    This is interesting, but I'd say my symtpoms weren't really like mania at all. It wasn't like I felt I was on top of the world, or anything, it was very different. More like I didn't even get almost any dopaminergic activity and didn't even get much of the positive stimulation, but solely the norepinephrine.

    Obviously stimulants can cause oxidative stress at certain doses, and CFS already involves problems of metabolic stress (although I am more thinking in terms of "reductive stress" aka pyruvate reduction to lactate, it's complicated and could involve oxidative stress too)... so I guess that sort of explains it, but it's still a little odd to me that it would change that much. You would think that stims at the right dose could help CFS. But I think it's a good clue that CFS isn't solely neurological but is due to profound problems in metabolism. If it was just a problem of neurological signals related to fatigue, methylphenidate or even modafinil should help. But there's something broken in metabolism so profoundly that just increasing catecholamines doesn't help and even makes things worse. Although I've had beneficial effects from tyrosine, which would just increase dopamine and not other things, but even stimulants that have more affinity for dopamine relative to norepinephrine, like dextro isomers, caused issues.


    The changes in effects from drugs that I got pre-illness and post-illness were often so stark that I wonder if there are enough clues there to guess what's going on.



    Another example is that I used phenibut at certain points early in illness (when it was more brain fog and some insomnia, but not severe fatigue), and it had great effects.
    Then later on, it caused very odd "hangovers" that caused this brain-on-fire symptom that I think is possibly related to glutamate excitoxicity, esp. since this is a problem with gabaergics anyway, but I imagine in CFS this is far worse (I got this from GHB too, can't compare with alcohol since I didn't drink).

    Now I have such severe fatigue and ostensibly such a weak metabolism/susceptibility to stress that I can't even imagine doing drugs like this to self-medicate.

    Also caffeine doesn't remotely cause this problem for me but caffeine isn't a classical stimulant and works via very different ways--adenosine, mitochondrial uncoupling, also has effects on ach and mast cell aggregation.
     
  16. Iritu1021

    Iritu1021 Breaking Through The Fog

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    @debored13
    It's a common misconception that manias are supposed to be pleasant. That's just one type of mania that occurs in bipolar 1. The manias in bipolar 2 are not pleasant, not associated with grandiosity, or euphoria or any abnormal thinking. They are characterized as states of agitation, bodily anxiety, overstimulation, insomnia - basically exactly what you described. In other words - they are dysphoric manias. They are probably associated with glutamate toxicity and abnormal cellular metabolism (that probably involves membrane phospolipids or sphingolipids and maybe intracellular calcium regulation) - so I agree with you on that part. The cellular metabolism might be mostly confined to CNS, however, hence the "invisibility" of the disease.

    Bipolar 2 is a neurologic condition that desperately needs a new name to avoid the confusion and misconception - and some experts are now advocating for that to happen. Bipolar 2 is not a mild variant of bipolar 1 but a separate, very debilitating physical illness with a different mechanism.

    Once I really studied the latest info on bipolar 2 and its natural course of progression (severe brain fog, extreme fatigue, bedbound/house bound, lifelong disability) I began to suspect that some types of CFS and bipolar 2 are pretty much variants or different stages of the same disease. The ratio of depression to hypomania in bipolar 2 is something like 40:1 and when hypomanias do happen they are most likely to manifest as bursts of creativity. And even those completely disappear in the later stages.

    If I was correctly diagnosed with the combination of bipolar 2 and hypothyroidism, I wouldn't have ended up with CFS which was largely due to iatrogenic complications that destabilized my already nervous system, which in turn destabilized my immune system. The combination of SSRI/stimulant/T3 was powerful enough to cause an "all systems crash" in my body. But it took me almost five years to figure out this connection.
     
    Last edited: Oct 5, 2018
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  17. debored13

    debored13 Senior Member

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    The reason I'm still skeptical about centering neurology is that there are both well demonstrated findings and a load of anecdotal evidence that suggest real impairments in exercise function and metabolism not just in brain cells, but in skeletal muscle cells, differences in serum, etc. If we look at a similar but more severe impairment of pyruvate dehydrogenase function like Pyruvate Dehydrogenase Complex Deficiency, it wouldn't be considered a primarily neurological disease despite that the impaired metabolism and consequent lactic acidosis affects the brain terribly.

    Obviously there needs to be way more studies on this, but my guess is that the impaired metabolism is not confined to the CNS, and that the problems with exercise function aren't due to some kind of CNS sensitivity to pain but are in fact real pain signals due to problems with lactate, AMP, etc... impeding oxidative metabolism and causing way way lower aerobic/anaerobic threshold in CFS patients, hence why "pushing through the pain" doesn't work for us.

    I'm sure that neurology and trace amines play a role in why we're sick but I'm also thinking about how psychiatric and psychopharmacological ideas have not fully realized the complex role these substances, neurotransmitters and so on, play not just in the brain but in the whole body, the heart, the gut and so on.

    I'm also thinking about how psychiatric medicine has had a real series of failures in terms of concepts to explain depression etc, like the idea that low serotonin causes depression, which is why SSRIs were supposed to work, etc
    And also the replication crisis in psychology, and how there are lower standards for evidence for psych stuff but also how doctors are content to refer CFS patients to psych anyway, as if it's some kind of magic bullet.
    I both agree and disagree with discussing psychiatric and physical illnesses as related or on a spectrum. I think it involves unfortunately entwined political and epistemological problems, and is about framing. I agree inasmuch as there is a "mind-body" connection, but also i think that psychiatry and neuropsychiatry is too often ignorant of physiology, metabolism, etc. Like how often does one go to a psychiatrist and get bloodwork for thyroid issues or lactate or B12 done before they get prescribed an antidepressant? If the current paradigm of psychiatry was better and less fraught, I would agree about collapsing the categories, but it is tricky given this issue. I'd much rather collapse the categories in one direction (by seeing psychiatric illnesses as physiological/hormonal/metabolic) than in the other direction, which leads to CFS people being prescribed CBT etc.

    I mean and one of the differences is even in serious depression and most psych disorders you can get some benefit from exercise, whereas this is dangerous for CFS people, because of the metabolic impairment.

    As for the bolded part, I would think that the "invisibility" of the illness has to do more with testing methods and technology than anything else. Several findings have been demonstrated in blood and cells outside the CNS, but a lot of them used metabolomics testing which is relatively new and expensive and unwieldy, not exactly what you can do at a doctor's office.

    Similarly, you can study CFS cells in culture but you can't get testing of intracellular or extracellular metabolites or toxins or substances at your doctor's office. I think the invisibility of the illness is similar to that of MS before MRIs being widely available (or am I thinking of CAT scans)... either way, before you could see demyelination, it was assumed to be hysteria, etc.


    Not to say I wholly disagree with all these ideas about neurology, and I want to study the TAAR1 receptor and catecholamines and trace amines a lot more. More that I just think that the findings of metabolic impairment and skeletal muscle impairment will only continue to get more robust.
     
  18. debored13

    debored13 Senior Member

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    I'm also curious about the role of environment and possible mutations though. I really don't understand genetics or heredity but it sounds like you're saying that people with CFS are predisposed to have this cluster of psych/physiological disorders intertwined. But I was on ritalin for years without any mania or really much issue at all, no euphoric or dysphoric mania. In fact I'd say I think it was healthy for me, I got paradoxical relaxation, etc. The only thing that changed was this infection + other stress. the science of cumulative stress and feedback loops seems as important to this as genetics, given that none of my family has issues with mania or any of this, and I was on stimulants for a long time b4 they caused issues, and only then after a specific well defined illness trigger.

    It wasn't like I had a short honeymoon period with stimulants. But maybe I'm misreading what you're saying.. How long did the "good period" with stimulants last, and did you get some kind of illness trigger between good effects and bad effects?
     
  19. Iritu1021

    Iritu1021 Breaking Through The Fog

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    I didn't say it was purely neurological problem, I said it was a combination of neurologic problem with hypothyroidism. I also have an impairment of fatty acid metabolism on organic acids test which probably contributes to the problem (lactic acidosis, fasting intolerance, easy muscle fatiguability). But the other two issues are congenital and something that I've managed to live with - the neurologic aspect is what's pulled the trigger.

    I've had it all - grossly abnormal exercise test, loss of balance, PEM, severe lactic acidosis, muscle atrophy, POTS, sore throats, flu-like malaise/high cytokines, all sorts of weird aches and pains - it's easy to lose the importance of the neurologic aspect underneath of that. Once I corrected the hypothyroid aspect of the disease, the neurologic aspect became a lot more defined and obvious.
     
    Last edited: Oct 5, 2018
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  20. Iritu1021

    Iritu1021 Breaking Through The Fog

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    I don't think I would have run into much trouble with stimulants if I wasn't placed on Armour and SSRI at the same time. It really took a "triple whammy" plus concurrent Hashimto's flare, nutrient depletion from pregnancy and breastfeeding, and a lot of life stress. The stimulants and SSRI combo made me feel very good apart from some minor tachycardia issues in the afternoon. It often takes multiple triggers, and on top of that bipolar usually doesn't manifest until late teens or early twenties.
     
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