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    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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  1. D

    Active B12 Protocol Basics

    I bought some AOR Methylcobalamin of the shelf of a local health food store. It has a lot# which indicates June 2017 (Expiry in 2020, but we know methylcobalin is not so stable). Do you think it has been degraded by now?
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    Low Dose Dextromethorphan (cough syrup) looks promising. Has anyone tried it?

    DXM is dissociative, it causes depersonalization in healthy persons when taken at above recommended dosages.. MECFS have problems with DP/DR already. That's why I never experimented with it, because I don't want to trigger a relapse in my DP/DR symptoms. That is my warning, because almost...
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    The Lost Years

    7 years. 18-25. I've had a few significant remissions. Never to 100% functioning, and each subsequent remission is shorter and my functioning is never as good as the one before. My last remission is ended roughly one year ago. I'm getting increasingly worried that I won't have another chance and...
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    Why does going from lowish- to low- carbohydrate diet reduce cognition?

    A smart man once told me that low-carb diets lower thyroid function.
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    "It's a poor sort of memory that only works backwards"

    This reminds me of some strange experiences I had regarding my memory when I was in heavy benzo withdrawal. One experience: I said something to my mom. What I said was immediately entered into my long-term memory. On one level I knew that I had just said this thing to my mom, but it felt like I...
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    What do You think is your most disabling symptom?

    Being punished for trying. PEM is so demoralizing.
  7. D

    difficulty speaking

    Does laying down make it better? That would be a major clue.
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    I have AMP deaminase deficiency (genetic). My endurance sucked all my life, and my recovery time from exercise was always longer, even as a child, but I never had PEM or any other ME symptoms. I guess if things had gone differently this common genetic disorder would have been completely...
  9. D

    Fibromyalgia grieving and opiate intolerance.

    Sorry for being so vague. I mean that society has a phobia of opioids. I'm not the first to use the term. The trend I see is that the establishment feels that it is better for some people to be in pain to protect some people from addiction. That's what makes me angry. I don't do the subject...
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    Fibromyalgia grieving and opiate intolerance.

    Opioid-phobia is a real phenomenon, and it makes me sick.
  11. D

    What has helped more with your sleep?

    I take mirtazapine 15 mg.
  12. D

    Cardiologist and Beta Blockers

    I was admitted to the hospital for POTS several years ago because I could not sit up and had pre-syncopy while laying down. The cardiologist I saw wanted me to take a beta-blocker, but I refused it. My attending physician was a sharp man and we decided to try me on fludrocortisone. In a few days...
  13. D

    Coffee,, yes or no

    Caffeine is the only stimulant I can tolerate, and coffee is my preferred method of delivery.
  14. D

    Endothelial Nitric Oxide Synthase and POTS

    This reminds me of Dr. Pall's OH/ONOO theory.
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    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I have a bottle of nitro sublingual spray which my grandfather left behind when he passed.. I did try it once and will try it to more. The only adverse effect was a headache which passed in about 5 minutes. I remember a thread where people tried it and saw success. It was on Dr. Goldstein's...
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    Borderline Intracranial Hypertension Manifesting as CFS

    I wonder if some cases of low blood volume seen in PWME are an attempt by the body to prevent a further rise in intracranial pressure.
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    Scientists post open letter to Lancet on Virology Blog - call for independent re-analysis of PACE

    A quote I'm sure most of you are familiar with. "The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest...
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    Heterologous immunity: immunopathology, autoimmunity and protection during viral infections.

    This piece is from 2011, but I couldn't find it on the forum here and the full text is interesting.
  19. D

    Does Midodrine often raise only diastolic blood pressure?

    120/90. I'm definitely not recommending that combination, it's just something that's been floating around my head. The increased BP from Florinef was enough to put a large dent in OI once in the past, but eventually I got a back-of-the-head-ache when lying flat, which I took to be a potential...
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    Does Midodrine often raise only diastolic blood pressure?

    This is only a thought of mine and I don't really fully understand the mechanisms at play here, but if you have low blood volume I imagine that increasing peripheral vasoconstriction will not raise your systolic blood pressure as much since that extra vasoconstriction is not pulling...
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    Surprise, surprise, MMS is toxic!

    I think that products like this give pharma an easy excuse to push for more stringent supplement regulations.
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    Pains in calf.

    Self Trigger point therapy using a ball has been the most effective treatment I've tried. It doesn't get to the root of why trigger points are being created repeatedly in my calve muscles, but it is good symptomatic treatment.
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    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Thank you both for the summary. I appreciate it.
  24. D

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    I see that beta-2 receptors are being mentioned a lot in the forum lately. I did a search of the forum (limited, I am dealing with ongoing eyestrain), but I can't find any information that indicates how beta-2 receptors might influence the disease (POTS or ME/CFS) in general. How would...
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    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    I started taking this combo a couple of weeks ago: 250 mg CDP-choline 300 mg Pantethine 6 eggs daily (LOTS of choline in the form of phosphatidylcholine) Also 1 g biotin, although I don't know if this has contributed to my success My RHR has decreased from the mid 90s to the mid 70s. Also my...
  26. D

    Doc wants me to do treadmill stress test

    I had a severe crash lasting several months after a treadmill stress test. What really devastated me was that I performed PERFECTLY during the test, but almost immediately afterwords (after the doctor said his goodbyes) I collapsed on the ground from sheer exhaustion and could not move for...
  27. D

    Unfolded Protein Response and A Possible Treatment for CFS

    The worst reaction I've ever had to a supplement was to glycine. I can't explain it, and because of chronic eyestrain I have little ability to research why. I don't mean to derail this thread.
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    "Effects of low-dose clonidine on cardiovascular and autonomic variables in adolescents with CFS..."

    I think you can have high norepinephrine and still do well on a drug that raises norepinephrine. I tested high in urinary catecholamines (I admit I have no idea what the implications of this test are vs. testing plasma norephinephrine) and I do well on bupropion (an NRI) and mirtazapine (an...
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    "Effects of low-dose clonidine on cardiovascular and autonomic variables in adolescents with CFS..."

    This same group did a study which found that CFS patients had higher plasma norepinephrine levels as compared to controls. Of course higher levels does not mean too high for that specific patient population, which I think is what you're saying, and is exactly the same conclusion they came too in...
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    Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1

    Very interested in visual symptoms, thanks for posting.