• 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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  1. C

    Chronic fatigue syndrome page on RationalWiki.org

    Rationalwiki is an ideologically left-wing website, anything that does not comport with their political bias does not get accepted. Considering the uniform opposition by socialized healthcare systems to CFS being anything other than psychogenic in nature, it makes perfect sense why it would...
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    Chronic fatigue syndrome page on RationalWiki.org

    In the case of such disorders as CFS it will always come down to whether or not you have money, it does not make financial sense for government mandated (and paid) healthcare to not mitigate risk and cost using every cold calculating method they can find. That means people like us will always be...
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    Chronic fatigue syndrome page on RationalWiki.org

    Then why is it that people on this very forum have had to circumvent the authority of the NHS to receive treatment elsewhere? If that weren't the case we would see repeated examples of how NHS as a government run service had a standard of treatment for CFS patients far and beyond what is the...
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    Chronic fatigue syndrome page on RationalWiki.org

    If you think begging the government to undertake that burden where in every country where socialized healthcare exists they've specifically tried to bury patients who suffer from such disorders, I don't know what to tell you. The only way I was ever going to receive treatment, and I knew this...
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    Chronic fatigue syndrome page on RationalWiki.org

    If you read the article it mentions how that one particular doctor's conclusions heavily informed NHS policy. So I was mentioning ACCESS to treatment, which under a socialized system, is basically a death knell for anyone seeking treatment if the prevailing bureaucracy opts to mitigate...
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    Chronic fatigue syndrome page on RationalWiki.org

    It's actually not, it's a far left outfit, as is typical of the left trying to co-opt terms such as "rational" or "skeptic" as a matter of political posturing. Consider it the leftwing equivalent of conservapedia. The left hasn't been very good on the whole "science" thing as of the last 10...
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    Chronic fatigue syndrome page on RationalWiki.org

    "Rationalwiki" is a dump, remember this is what progressives believe, these are the same ardent supporters of socialized healthcare, which by magical coincidence also supports the notion of CFS being of psychological etiology, gee I wonder why that is? This right here: The government...
  8. C

    What does it feel like to substantially improve the quality of your life?

    The problem with that is that higher temperatures tend to reduce blood pressure, I started treatment during the dead of winter and I was pretty good, as soon as the temps crept up into the positive double digits celsius I knew my old nemesis wasn't going to give up without a fight. My blood...
  9. C

    Study The Wild Animals and You Will Improve......

    With people who have serious problems changing diet isn't going to be the complete solution, but if you have dietary or GI issues that could make things worse, you could make slight improvements. I found out this year that I have a negative-repute SNP involving the MTHFR gene, for me changing...
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    What does it feel like to substantially improve the quality of your life?

    It's hard to say what can cause it in each case, but it's strange that blurred vision seems to be a common problem among people with CFS. I also had issues with blurring vision, usually it accompanies a cascade of other negative symptoms when it happens for me, a sign of worsening condition to...
  11. C

    I finally found a doctor, and I'm now receiving treatment.

    @Mary If anyone would like to know, ask and I'll send you a PM.
  12. C

    What is the Connection between SIBO and CFS

    I have to take a ridiculous amount of supplements to keep my body from succumbing to systemic bacterial infection which often seems to start in my gut. As another poster has stated, GI infections can absolutely exacerbate fatigue but that might not be the total extent of the cause(s). I find...
  13. C

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    As a matter of fact, yes. Although it wasn't extreme, I had considerable endurance problems in terms of cardiovascular performance, even as a child, most notably when swimming. When I was 16 I started exercising and working out. When I first started running it was a hard-won accomplishment to...
  14. C

    What does it feel like to substantially improve the quality of your life?

    Still in the process, my doc basically said he doesn't think I'll resume working 12 hours a day outdoors anymore though. I used to spend days to weeks incapacitated in bed, now I'm at a decent baseline of "I can go out and do things if I need to but I couldn't run a marathon or keep up a high...
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    I finally found a doctor, and I'm now receiving treatment.

    I found a doctor in my city who specifically takes on people in my situation, this was back in early December, I did an absolute mountain of tests from that month on until about February. The medications I'm now on are - Cortef 20-10-5mg every day (my cortisol levels were in the dr's opinion...
  16. C

    Day Seven on LDN

    I'm actually down to 0.2 myself and I actually started to experience the characteristic sleep disturbance effects of LDN. Probably because it was metabolized more quickly and I started to experience the endorphin recovery sooner. That being said, I still woke up rather easily and feeling...
  17. C

    Low-dose naltrexone (LDN) - how's it working for you?

    I've had to reduce my dosage of LDN pretty far now, I was starting to experience some weird side effects described by others as "emotional flatness", I'm actually now down to an "ultra low dose" of 0.20 ml and it seems to be working better. The dehydration has reduced as well as the perceived...
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    Day Seven on LDN

    Yeah I have the funny taste in my mouth too, I chalk that up mainly to the apparent dehydrating effects of the LDN. It now feels as if I'm taking accutane, and so I'm going to try the safest GLA supplement I can to see if I can help with that.
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    Low-dose naltrexone (LDN) - how's it working for you?

    I've heard some people basically say that after a time the LDN on a consistent dosing schedule doesn't work, you could try staggered dosing by trying it at low levels on alternating intervals based on what you think might help. Whether that's every other day, every two days, every three days...
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    Day Seven on LDN

    I'm sorry to hear about your difficulties with LDN, I wouldn't recommend giving it up, however perhaps titrating down? I can only imagine that I would not tolerate over a miligram very well at this point. I actually do take my 0.5 right before I settle in, I also make sure that I'm properly...
  21. C

    Low-dose naltrexone (LDN) - how's it working for you?

    Pretty good for me. Out of the gate I've been only on it for a week and at 0.5mg I noticed very short term improvements that caused me to over do it and crash on the fourth day. My only concern is my dry eyes/mouth GI issues seemed to get a bit worse, I'm trying to figure out how to manage...
  22. C

    Day Seven on LDN

    That's crazy, I'm also on day seven. Immediately I've noticed a benefit in terms of how well I sleep, I understand some people don't sleep too well on it, however I've noticed I sleep very soundly now, it is really nice to wake up and not feel like my heart is racing as if I've been running...
  23. C

    Anyone with a diagnosed catecholamine disorder/dysautonomia?

    I don't take anything with peppermint anyhow, and yeah, I'm fairly convinced I have histamine issues.
  24. C

    Anyone with a diagnosed catecholamine disorder/dysautonomia?

    Thank you for taking the time to respond, I appreciate the info and I will definitely follow up on the advice you've given, especially Dr. Grubb's talks on the subject. I think that I would not always fail a tilt table test myself as my condition fluctuates, however at my worst I would say...
  25. C

    Poor Adrenal/Neurotransmitter Output

    You can do blood catecholamine tests, although they are supposedly less reliable.
  26. C

    Poor Adrenal/Neurotransmitter Output

    That's interesting, my only concern is how blood samples are taken. "Alternatively, many of our tests can be conducted using a finger prick method at home" Ahh, interesting, I didn't think that would be enough for a sample.
  27. C

    Poor Adrenal/Neurotransmitter Output

    Damn I would love to get tests as detailed as the ones you're getting, no such luck where I live, I don't even know if a private doctor would be willing to do them without the government regulatory pitchforks coming out. I'm fairly certain I'm in a similar boat neurotransmitter-wise, only I'm...
  28. C

    Clonidine lower noradrenaline decrease anxiety

    This was pretty much my experience with propranolol as well, the side effects from taking it, including tinnitus even after taking one or two doses was enough to make me want to avoid taking it if I could help it.
  29. C

    Anyone with a diagnosed catecholamine disorder/dysautonomia?

    Hello @taniaaust1 Thank you for sharing your experience, it does help me gain a bit more perspective as to what I might be experiencing. I have in the past actually used propranolol in the and at times it did seem to help, however I'm honestly wondering if either I bounce between hyper and...
  30. C

    Anyone with a diagnosed catecholamine disorder/dysautonomia?

    During the warm weather, especially during the summer months my symptoms immediately begin to worsen. I do present quite a few typical POTS-type symptoms in general, such as dizziness/faint/lightheadedness and specifically blurry vision at times. During last summer it in fact got so bad that I...