• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    List of ME/CFS Recovery and Improvement Stories

    Is this your first time taking an SSRI or SNRI? I got a similar but temporary improvement with sertraline, it was short-lived only lasted a few weeks. I think it would’ve happened with any SSRI it was only the first one that did this, I wasn’t ever able to reproduce it again with any other SSRI...
  2. L

    what causes the sore throat we get?

    If you have MCAS as a comorbidity it’s also a cause of sore throat. It took me over 10 years of having ME to realize that some of my symptoms are from MCAS. Treating it has improved these symptoms.
  3. L

    Abilify- Stanford Clinic Patients

    I haven’t noticed anything out of the ordinary or any benefits yet. I’ve been on 100 mg per day taken at night for only few days. No increased sedation. But everyone is different for example I had no increased GI issues from SSRIs, which supposedly is a very common symptom.
  4. L

    Abilify- Stanford Clinic Patients

    Hydroxyzine 25-50mg at night as needed if that doesn’t work I’m not sure what will
  5. L

    Abilify- Stanford Clinic Patients

    Haven’t been around for a while been too ill. The mood and anxiety benefit from sertraline lasted about 4-6 weeks after going up to 100 mg and after subsequent ME crashes lost its benefits except for side effects, like making my head feel swollen and hurt and a low grade constant tinnitus...
  6. L

    Abilify- Stanford Clinic Patients

    If hydroxyzine 25-50 mg doesn’t put you out I don’t know what else will. For me it’s the strongest of them all.
  7. L

    Abilify- Stanford Clinic Patients

    LDA is not a sleep med. Did nothing for me and did absolutely nothing for many others with ME. For sleep I cycle between zolpidem ER, eszopiclone, tiagabine, and hydroxyzine currently. They all help and when I build up some tolerance I change to another for a while, and so on.
  8. L

    Washington Post article, 8/17/23 - by Brian Vastig - re NIH breakthrough re WASF3

    The COVID-OUT DBRCT comparing metformin, fluvoxamine, and ivermectin on the risk of developing LC in COVID patients found that only metformin reduced risk, fluvoxamine and ivermectin had no effect.
  9. L

    Ron Davis Update

    And sorry if this idea has already been hashed out and isn’t relevant, but how about clinically testing IL-1 inhibition in ME/CFS patients as proof of concept to see if illness symptoms are indeed driven by inflammation or not? This would circumvent the issue found with testing corticosteroids...
  10. L

    Ron Davis Update

    What are thoughts on testing type I interferon inhibitor therapy in ME like is done in SLE? Since they’ve found similar levels of increased IFNa in ME as in SLE. Type I interferon (which includes IFNa) is activated in more than 50% of SLE patients and is considered an important pathogenic...
  11. L

    Vagus nerve stimulation - Nurosym device

    Someone on Reddit discusses the differences in wave and signal these tVNS devices create. They aren’t all the same
  12. L

    Abilify- Stanford Clinic Patients

    That’s great then no harm experimenting. Just didn’t want you to shell out a lot of money.
  13. L

    Abilify- Stanford Clinic Patients

    My guess would be that cariprazine won’t work either since all these drugs are structurally similar and in the end work by very similar mechanisms. If you had gotten a partial effect from brex then sure changing to another in the class like cariprazine could work, but with zero effect I don’t...
  14. L

    Abilify- Stanford Clinic Patients

    Coincidentally I started sertraline too 8 weeks ago. I had been taking moclobemide for a couple years now but it did virtually nothing for mood, depression or anxiety. Wanted to try another antidepressant to help with ME reactive depression, which was very real since I became bedridden for...
  15. L

    Abilify- Stanford Clinic Patients

    I don’t know what dementia feels like but I always likened ME cognitive dysfunction to my brain being in a dementia like state. Everything seizes up, clogged, on fire, intense encephalitis like pain, can’t even get through a thought let alone think my way out of a paper bag, everything misfiring
  16. L

    Abilify- Stanford Clinic Patients

    If you read the symptoms of adult ADD I just don’t believe they don’t map to ME/CFS cognitive dysfunction symptoms. For example ppl with adult ADD can hyperfocus on things they like but easily become distracted or unable to pay attention to things that bore them. This is not the case with ME/CFS...
  17. L

    Abilify- Stanford Clinic Patients

    I know it’s hard to verify, but reports like this I always take with a big grain of salt. I think a lot of Reddit users think they have ME but weren’t ever diagnosed properly, so who knows. Were these people officially diagnosed with ME/CFS and have all the hallmark symptoms? How did it get...
  18. L

    Abilify- Stanford Clinic Patients

    This is totally plausible and we’ve discussed this theory before, research has shown that Abilify (and similar Vraylar, Rexulti) have potent cellular metabolic effects that prevent cells from either bringing glucose into the cell or utilizing it as effectively (I forgot), so it could be that in...
  19. L

    Abilify- Stanford Clinic Patients

    Partial agonists increase dopamine neurotransmission in brain areas where there’s too little, and decrease dopamine neurotransmission in areas where there’s too much. The intrinsic affinity of the drug at dopamine receptors and the dosage you take is directly tied to how this works But I...
  20. L

    Abilify- Stanford Clinic Patients

    I think a lot of pwME might disagree here based on their personal experience. I for one didn’t feel any change to my reward/motivation pathways both times I took LDA and went into temporary partial remission. Hope I can explain it better below. I also haven’t heard that a lot of pwME have...
  21. L

    Abilify- Stanford Clinic Patients

    I’ve done two trials of LDA that worked well and pretty much the same with each lasting a few months before having to stop. I took a pause of 6 months in between. I will do a third trial this year.
  22. L

    Abilify- Stanford Clinic Patients

    I’ve tried dopamine agonists actually all the way back in 2014, long before I knew of Abilify. They didn’t work for me. I tried both pramipexole and ropinirole or cabergoline (can’t remember which). I also tried MAO-B inhibitors selegiline and rasagiline. Nothing worked. A couple anecdotal...
  23. L

    Abilify- Stanford Clinic Patients

    I’ve tried dopamine agonists actually all the way back in 2014, long before I knew of Abilify. They didn’t work for me. I tried both pramiprexiole and ropinirole or cabergoline (can’t remember which). I also tried MAO-B inhibitors selegiline and rasagiline. None of these worked. Also, only a...
  24. L

    Abilify- Stanford Clinic Patients

    Unfortunately here in the US Vraylar is still not generic, but hopefully in Germany
  25. L

    Abilify- Stanford Clinic Patients

    Totally agree (see my above posts to Martin). This recent discussion made me ask myself, if since we think it’s probably not all about dopamine, and that makes sense, why do very low doses of Abilify help a lot but somewhat higher doses don’t? If it’s due to anti-inflammatory or immunomodulating...
  26. L

    Abilify- Stanford Clinic Patients

    Supposedly brexpiprazole and cariprazine, because they have a lower intrinsic affinity at dopamine receptors than aripiprazole, function differently than aripiprazole at low and high doses, they actually function in the opposite manner. See the Wikipedia page on brexpiprazole for the...
  27. L

    Abilify- Stanford Clinic Patients

    Btw brexpiprazole became generic in the US last year after court battles against Ostuka and Lundbeck, but funny even today when you look it up on GoodRx you can find it and the dosages but seems like no pharmacy carries it yet and no prices? Weird
  28. L

    Psoriasis

    @godlovesatrier regarding hydrocortisone topical, may I ask what is your aversion to it? Any dermatologist would tell you it can be used indefinitely and will not cause skin thinning or other side effects. That’s why I find it useful because it works, though doesn’t last as long per application...
  29. L

    Abilify- Stanford Clinic Patients

    Thanks for the details @hmnr asg. I can say from my experience I was taking moclobemide every day (MAO-A inhibitor antidepressant), and once or twice a week gabapentin, eszopiclone (sort of benzo), and melatonin during both my LDA trials where each time it improved ME symptoms tremendously for...
  30. L

    Abilify- Stanford Clinic Patients

    Thanks @jaybee00 for some of this anecdotal info, which I know isn’t super reliable we don’t know for sure if those people actually have same ME as others who responded to low dose Abilify, but we can start looking at the shared known mechanisms of action between these drugs and Abilify. I will...