The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Low Dose Dextromethorphan (cough syrup) looks promising. Has anyone tried it?

Discussion in 'Latest ME/CFS Research' started by BeautifulDay, Oct 11, 2017.

  1. MAOAr297r

    MAOAr297r Senior Member

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    Well said. As someone who has struggled with dp/dr and tried low does dxm I can confirm this. Thats also the reason I wasn't given ketamine for my depression even though I was eligible . dp/dr= no fun.
     
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  2. SueJohnPat

    SueJohnPat Sue

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    I have taken dxm for long periods of time for a chronic cough. It did nothing for the cough but I figured it might help due to its ketamine like properties. I did not notice any improvement.
     
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  3. Wishful

    Wishful Senior Member

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    Tried it (a couple of experiments of varying duration, recommended and lower dosage); did nothing for me.
     
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  4. debored13

    debored13 Senior Member

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    Vermont, school in Western MA
    I have done lots of ketamine since I initially got lyme, and before I had figured out that I probably had CFS.
    I think ketamine tended to give me great relief from a certain kind of agitated sensation in my head that was part of my illness. It's hard to explain but there are really specific sensations that i get that aren't pain but are part of being sick. Anyway ketamine would relieve this agitation similarly to gabapentin, which i was prescribed. The problem was at that point I still couldn't sleep without meds, and I felt nervous taking my sleeping meds after ketamine usage. This was kind of stupid because ketamine causes next to no respiratory depression. Anyway I'm curious to try ketamine and/or dxm now.

    For the past four months I've done basically no drugs at all, just because they wear me out and i'm already too tired.

    I will say this... the toxic aspects of having a hangover from a gabaergic drug are generally due to glutamate excitotoxicity, too much glutamate release causing overexcitation of neurons. I have been so, so , so much more sensitive to GABAergic hangovers since my initial Lyme diagnosis and probable CFS. I can't know that it's due to glutamate without a biopsy or something, but I can strongly suspect that that's what's going on. It has been a clear pattern. So I wonder if glutamate excess is part of CFS.

    Anyone else notice this?
     
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  5. serusaert

    serusaert

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    i have had some good results with LDN, also a potential microglial anti-inflammatory, so i decided to try low dose DXM. i only have the pill form right now. i've been cutting off small hunks of a an extended-release dxm/guaifenesin pill. it's way to early to tell if it helps but for this to proceed, i need:

    1. a source for powdered DXM so that i can get an exact dose without other ingredients
    2. guidelines for low-dosing

    re 1, i found a couple of sites, one US and one China. i queried both for prices on 5-10 g dxm. the US site will probably not sell to me as i'm not a legitimate clinical business, but i would prefer this source for the assured quality. however, the China site is likely where i will get it from ($100 for 10 g).

    re 2, i am going to start at 5 mg and stay there for a month.

    if anyone has experiences, ideas, thoughts, or links to share on this, i'd really appreciate it.

    thanks!
     
    Mel9 likes this.
  6. Wayne

    Wayne Senior Member

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    Hi @BeautifulDay,

    It's nice to sense your enthusiasm for starting this new therapy, so I'm a bit hesitant to send you a cautionary note. My understanding is this drug's effects is, at least in part, attributable to its anticholinergic properties. There's a lot of information online on anticholinergic drugs, which can have some pretty serious side effects.

    I understand you're planning on starting slowly at low doses, but I would encourage you to check out all the side effects that can happen before you even begin, so that you can be ever alert for them if they crop up. A lot of people with CFS are "alcohol intolerant", and if that's the case for you, I would recommend even greater viligence. The reason being is that--according to my understanding--anticholinergic drugs are central nervous system depressants, similar to alcohol.

    I myself had a very bad adverse reaction on February 3 to a single dose of an anticholinergic drug which I posted about on THIS THREAD. Taking that single dose of an anti-nausea medication was most likely the worst decision I've ever made. The consequences I wrote about in that thread--and some I didn't write about--are still with me almost 3 months later, and I don't know that I'll ever fully recover.

    One of the things I now struggle with in a major way is the extreme case of tinnitus that began at that time, and continues mostly unabated. In my research on anticholinergic drugs, I discovered most or all of them are ototoxic, that is, toxic to the ears. Most common antihistamines and cold drugs are anticholinergic, and I ran across accounts of people's tinnitus starting with taking them. Once person said he took only a single dose of Benedryl, and has had tinnitus ever since.

    I don't want to divert you away from doing something that may be beneficial for you, but I would encourage extreme vigilance as it pertains to your brain and inner ears. Even though you may not notice anything right away, it appears the effects can be cumulative. Sometimes major effects can occur immediately, and I would suspect it's those who are highly sensitive to drugs (which most people with CFS are) who are most vulnerable.

    There's much I don't know, and don't want to pretend to know about this topic. But I do know that a single dose of an anticholinergic drug has significantly lowered the quality of my life and overall functionality. I realize my adverse reaction was likely very unusual, but I wanted to at least send you a word of caution if you do begin this new therapy. And if you do, I wish you the very best!
    ---
    EDIT to ADD: Just noticed this thread was started several months ago. I would be most interested in an update if you ended up trying this therapy. -- Thanks.

     
    Last edited: Apr 25, 2018
  7. Crash Davis

    Crash Davis

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    I have suspected glutamate as being one part of the puzzle of this illness.

    I discovered the Lamictal/Klonopin combo a decade ago and this combo has nearly eliminated my crashes. If I stop either or both, they come back.
    Lamictal reduces glutamate and enhances GABA
    Klonopin (through activation of glutamate decarboxylase) breaks down glutamate while also enhancing GABA. Other benzos don't work the same for me.

    Tomorrow I will began an experiment with memantine, which is an NMDA antagonist. It will block glutamates activity at the NMDA receptor.
    My hope is that memantine can replace Klonopin as I believe it to be a much healthier long term option.
    Memantine has been used in Alzheimers patients to slow progression of disease....by blocking the harmful effects of glutamate.
    My DNA testing has shown me that I already need to be very careful about glutamate due to some risk factors and is the other part of the reason I want to try memantine.

    Heh.
    I just found this article from 2013 explaining exactly what I'm thinking more or less. Spooky. I've been taking Lamictal/Klonopin since 2007, well before this was written.

    https://www.healthrising.org/blog/2...fs-puzzle-the-neuroinflammatory-series-pt-ii/



    Glutamate antagonists
    N-acetylcsysteine (NAC) is usually thought of as an antioxidant but it also acts as a glutamate antagonist through facilitating the production of GABA. A number of small clinical trials have shown promising results for NAC administration in another disorder with sensory gating issues, Autism Spectrum Disorder (ASD) (Hardan et al, 2012). NAC is also fairly well established in the treatment of trichotillomania (compulsive hair pulling – a form of obsessive compulsive disorder (OCD).

    NAC’s effectiveness in ameliorating a sensory gating deficit may therefore lie in its role as a glutamate antagonist instead of (or indeed as well as) its antioxidant properties and role as a glutathione precursor.

    Oral GABA supplementation has also been shown to have potential to prevent metabolic syndrome and type II diabetes in a mouse model (Tian et al, 2011). Even more promising, neuronal damage caused by glutamate in ASD may be reversible by attenuating the over proliferation of glutamate receptors in the brain (Baudouin et al, 2012).

    Another glutamate inhibitor, low dose naltrexone (LDN) has shown some efficacy with pain and mood in fibromyalgia.

    Glutamate and ‘Neuroinflammation’
    In fact, research is increasingly suggesting that oxidative stress, mitochondrial dysfunction and glutamate excitotoxicity are intrinsically linked in a range of neuroinflammatory conditions (Coyle and Puttfarcken, 1993) presenting as various symptom complexes

    [​IMG]“Thus, two broad mechanisms–oxidative stress and excessive activation of glutamate receptors–are converging and represent sequential as well as interacting processes that provide a final common pathway for cell vulnerability in the brain.

    The broad distribution in brain of the processes regulating oxidative stress and mediating glutamatergic neurotransmission may explain the wide range of disorders in which both have been implicated. Yet differential expression of components of the processes in particular neuronal systems may account for selective neurodegeneration in certain disorders.”

    In short, the same pathological process can result in a different constellation of symptoms and therefore result in a range of eventual diagnoses.

    Oxidative stress, mitochondrial dysfunction and glutamate excitotoxicitymay also interact as a ‘feed-forward’ vicious cycle (Nguyen et al, 2011) :

    “Our results conclusively demonstrate that not only glutamate excitotoxicity and/or oxidative stress alters mitochondrial fission/fusion, but that an imbalance in mitochondrial fission/fusion in turn leads to NMDA receptor upregulation and oxidative stress. Therefore, we propose a new vicious cycle involved in neurodegeneration that includes glutamate excitotoxicity, oxidative stress, and mitochondrial dynamics.”
     
    Last edited: Apr 25, 2018
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  8. Crash Davis

    Crash Davis

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  9. Jackb23

    Jackb23

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    I too have tried ketamine infusions and my energy levelts waver quite heavily from the months that I am being infused to the couple months after infusion. When I am actively in the infusion stage they tend to make me more tired yet paradoxically I can’t fall asleep until about 5 am every night after 3 benedryl. Once the infusion part is done I tend to gain more energy for about a month or two.

    Similar to you, debored13 I am extremely sensitive to any substances that affect my neurotransmitters and this often affects me in the form of an internal agitation/restlessness. It’s almost like pain.

    -JB
     
  10. serusaert

    serusaert

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    hi @Wayne,

    thanks for the information and the cautions. you are right - we have to be very careful. i myself had a bad reaction to an anticholinergic drug (Afrin/Oxymetazoline) that i received during sinus surgery - it caused my blood pressure to spike dangerously high. i was sick for a month afterwards. i also have tinnitus btw - for several years now.

    i don't think that DXM is considered to be an anticholinergic drug, however, most preparations with DXM contain other drugs - many of which are anticholinergic (like benadryl). you might have seen reports of DXM overdoses where anticholinergic symptoms are prominent due to these other drugs. if you have a reference for anticholinergic activity of DXM, i would very much appreciate the chance to read it. it is the presence of these other anticholinergic drugs that are the problem with low-dosing DXM and this is why i am looking for a pure source. however, so are people who take DXM megadoses for tripping, so it's hard to buy it from a US supplier (even though DXM is OTC).

    @Crash Davis, thanks for the info on memantine and the links, i am going to review them, please let us know how it goes.
     
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