• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    Exogenous TGF-β1 in Brain-Induced Symptoms of Central Fatigue and Suppressed Dopamine Production in Mice 2021

    I too: have neuropathic and central pain (gets worse on exertion) hate TGF-beta after researching it have great symptom relief by dopaminergic substances I also have pain in the lymph nodes, especially in the cervical chain and axillary region. I was wondering, @pattismith, if you have similar...
  2. S

    Has anyone injected a supplement?

    Bro, don't take this the wrong way. Are you taking any psychotropic substances or have heavy brain-fog? I'm serious. The risk of injury or death is severe, and the risk/reward profile is abysmal. Please don't do it. You don't even need to inject yourself with a live bacteria. Just the wrong...
  3. S

    Has anyone injected a supplement?

    You will get an abscess and a hypersensitivity reaction. Anabolic steroid users sometimes "brew" their roids from oil and hormone powder and they spare no detail to sterilize: micron filters, autoclaving, lamellar flow hoods etc... And still infections happen
  4. S

    Abilify- Stanford Clinic Patients

    More evidence that dopaminergic increase is what mediates symptom improvement. We desperately need more research into a possible neurological basis for me/cfs.
  5. S

    Small fibre neuropathy weirdness?

    I'm very interested!, since we seem to respond to the same treatments: caffeine, corticosteroids, modafinil etc..
  6. S

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    I think that given the blood test plus symptoms, as well as the high risk of permanent damage, not offering a scavenger would probably be close to negligence
  7. S

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    Sorry man, I'm not in the US. I imagine googling for any doctor that has immediate availability, showing the ammonia measurements as well as the signs&symptoms should get you an ammonia scavenger. In the US phenylbutyrate is called "buphenyl", if that helps. Also, protein restriction, higher...
  8. S

    Unexplained hyperammonemia with loss of peripheral vision, HELP

    Listen, hyperammonemia can cause irreversible excitotoxic neurological damage very fast. Sodium Benzoate and phenylbutyrate are clinically available ammonia “chelators” that any doctor can prescribe. Citruline has been shown to be helpful, alpha keto-acids as well. Rifaximin can help if the...
  9. S

    Very agonising burning acid feeling in my mouth/cheeks. Turns out I had run out of arginine and taking citrulline is fixing it.

    Very interesting OP!, i dont think the ulcers represent some ammonia sink. Mucosal ulceration is usually an immune mediated process, and in crohns disease (and maybe ulcerative colitis as well) ulcers can appear in any part of the digestive tract. Arginine seems to be very important for immune...
  10. S

    Pulse oximeter to measure oxygenation during d-lactic acidosis, air hunger, hyperventilation

    I think there may be a basal level of bronchoconstriction and rhinitis that impedes breathing in ME/CFS
  11. S

    Will You Be Getting the Covid Vaccine?

    I have significant concerns as to the possibility of human cells incorporating the spike mRNA, considering it's delivered in what is basically an exosome, and it has been proven that the cytosol human cells has endogenous retrotranscriptive ability. As well, the encapsulated mRNA does not...
  12. S

    Cardarine, ITPP, BPC, and Others

    Shameless bump. I don't want to accidentally create the "fatty liver and diabetus in 2 weeks" stack
  13. S

    Abilify- Stanford Clinic Patients

    Nice! I have been thinking for some time that COX-2 inhibition would be a low hanging 10%. For me acetaminophen and ibuprofen + caffeine certainly do the trick
  14. S

    Abilify- Stanford Clinic Patients

    I remember talking to an anesthesiologist that treated crps (one of the "suicide diseases" alongside trigeminal neuralgia) and he emphasized that 5 drugs that improve symptoms by just ten percent usually net a 50% or more clinical improvement when taken together. If so, we may not be so far from...
  15. S

    Cardarine, ITPP, BPC, and Others

    Anybody using cardarine and meldonium together? They seem to have opposite mode of action, increasing vs decreasing mitochondrial b-oxidation?
  16. S

    Abilify- Stanford Clinic Patients

    If abylifys mechanism is related to dopamine increase, I think L-DOPA would work as well for a few years, maybe with carbidopa and seleguiline once it starts lo loose it's effects.
  17. S

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    Nope, like most direct interventions, the benefits fades with time
  18. S

    A New Hypothesis for Viral ME Symptoms

    Have you looked at glial serine racemase, and glial D-serine (over)production? D-serine is a potent nmda co-agonist at the glycine site. I also believe a stable maladaptive neuron-glial crosstalk is probably causative. Whats missing is the mechanistic link between glial cells and the symptoms...
  19. S

    A New Hypothesis for Viral ME Symptoms

    Sure. I think ME is a gating problem in the brain/CNS, driven by excessive Long Term Potentiation and NMDA signaling, resulting in many signals given inappropriate salience/relevance/importance. Now, the body has many danger signals, for example, extracelular potassium is a signal for hypoxia...
  20. S

    A New Hypothesis for Viral ME Symptoms

    I also agree with you that the time for vigorous debate is now, we have enough studies and anecdotal experience at hand that make educated guesses possible
  21. S

    A New Hypothesis for Viral ME Symptoms

    @Wishful do we have any evidence that there is immune activation in ME? Cytokine studies show nothing, autoantibody studies nothing, plasmapheresis is disappointing, clonal T cell expansion studies are inconclusive at best, acute phase reactants are lower than the mean, and NK cells are usually...
  22. S

    A New Hypothesis for Viral ME Symptoms

    Perrier, has she tried gabapentin/pregabalin? They work for me but I quickly develop tolerance. I use it once a week
  23. S

    Paracetamol

    A principal arachidonyl metabolite of paracetamol is a full TRPV agonist and downregulator. TRPV has been implicated in chronic nociceptive diseased like neuropathy
  24. S

    Abilify- Stanford Clinic Patients

    I think that the experiences described in this thread add further evidence that M.E. is in part or in whole a neurological (NOT psychological) disease. Here are some facts that point in this direction: -Both physical and mental effort produce a similar PEM response: This should immediately...
  25. S

    Do this mean I have POTS? (heart rate +35 stand test)

    Possibly. Have you measured your standing blood pressure? You may have well compensated (or even over-compensated POTS). This is important because treatment is basically the opposite for hypotensive and hypertensive cases.
  26. S

    Indirect ME/CFS improvement possible through more testosterone?

    Ive taken up to 500mg/week of test-enthanate, and no improvement. It is however great for depressive states!
  27. S

    Abilify- Stanford Clinic Patients

    I wonder if Low Dose Haloperidol may be able to be as effective, without tolerance: Parkinson's Disease: Low-Dose Haloperidol Increases Dopamine Receptor Sensitivity and Clinical Response https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4258318/
  28. S

    Abilify- Stanford Clinic Patients

    That could help short-term, but I believe that it may lead to tolerance long term.
  29. S

    Abilify- Stanford Clinic Patients

    (–)-3-PPP: Presynaptic d2 agonism and postsynaptic antagonist. The ideal compound for low dose triggered up regulation. If it also has a short half-life, its a hit. Then again, its investigational, so no reliable sources...
  30. S

    Abilify- Stanford Clinic Patients

    No idea man. Maybe a low dose dopamine antagonist (1st gen anti-psychotics) will lead to long term up regulation of post-synaptic receptors... Its worth discussing with your doctor if he understands the reasoning behind low dose naltrexone