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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. dan062

    Autoimmune or ME/CFS or both?

    @mermaid What @ahmo is saying makes a lot of sense. My personal belief is that CFS/ME is an autoimmune disease (or at least a long term autoimmune reaction to an initial viral infection of sorts), but like everything to do with this, there seems to be no end to controversies and theories, and...
  2. dan062

    Unable to relax

    Meditation is very easy -- and accessible even for someone with CFS/ME. I found yoga too physically difficult the few times I tried it. I would hold a pose and then an arm or a leg would start trembling (which was also a little embarrassing as this was in a studio). The quick 'how to': buy a...
  3. dan062

    My Gut Crusade

    Hey, @Beyond glad to hear that you seem to be making progress with your symptoms. As it seems to have worked for you, can you give me a quick overview of the diet you've been following. From your posts above, I can deduce that you were off: Gluten Casein Nightshades Plus I'm guessing all...
  4. dan062

    Black Seed Extract 'Cures' HIV Patient Naturally

    OK. I was interested in it for its (supposed) anti-viral properties, so was hoping that it would do something to tackle the big issue. My skin is fine, thankfully!
  5. dan062

    Black Seed Extract 'Cures' HIV Patient Naturally

    My general expectation with trying a medicine, pharmaceutical or natural, is that I will either feel better (conventionally, this is the hope), or worse (a herx). Or at the very least experience some kind of side effect. If I just feel exactly as I did before my gut instinct is that it's...
  6. dan062

    Commonly available natural antivirals -- any besides garlic/coconut oil?

    Thanks. I'll look into this. Never expected this would be the plant I'd be growing like that :)
  7. dan062

    Black Seed Extract 'Cures' HIV Patient Naturally

    I actually don't find it too bad. But then again, I'm coming from raw garlic, so anything is a (vast improvement). BTW, if anyone is looking for an easy place to find this, just check in any Asian grocery store. You'll definitely be able to find the whole seeds ('kalonji', or 'black seed')...
  8. dan062

    Symptoms and results. Please help.

    I definitely think so, too. I wouldn't be comfortable attributing everything to that at the moment with positive ESR, CRP, D-Dimer and episodes of incontinence. Perhaps more importantly, dysautonomia and CFS/ME are (for the most part) diagnostic dead ends and there is little to gain by being...
  9. dan062

    How does dysautonomia cause leg weakness?

    Thank you again. I'm beginning to think that biting the bullet and enrolling in med school might be the quickest way of figuring all this craziness out!
  10. dan062

    CrowdMed: how to get and give diagnostic suggestions for complicated patients

    AFAIK, migraines aren't the typical presenting feature of MS. I don't have a statistic, but I think optic neuritis closely followed or accompanied by some kind of focal neurological deficit, such as foot drop, is the classic presentation. Migraines, even atypical ones, can be a primary neuro...
  11. dan062

    CrowdMed: how to get and give diagnostic suggestions for complicated patients

    Nope. You get a PDF export of your case-file and it's up to you to take things from there. It would be a good idea if they had some kind of a network of partner doctors who would accept this and offer treatment if the suggestions fell within their speciality, but then again, what kind of...
  12. dan062

    How does dysautonomia cause leg weakness?

    Definitely the ANS and I'm pretty sure the vagus specifically (there's more to the autonomic system than just the vagus nerve, although it's the main conduit). Control of blood pressure, heart rate, and blood temperature are its key functions.
  13. dan062

    How does dysautonomia cause leg weakness?

    Hadn't encountered that term before but guessed what it meant. MG is listed as one (LES isn't on Wikipedia but pretty sure it should be). This is an interesting line of thought.
  14. dan062

    How does dysautonomia cause leg weakness?

    Thanks. Very interesting. I guess we have at least two possible explanations so. Would you mind elaborating on the point in bold, above?
  15. dan062

    CrowdMed: how to get and give diagnostic suggestions for complicated patients

    Lol. I guess you could say I'm in the same position. I was offered a lumbar puncture and declined. Particularly as when the autoantibodies showed up I reckoned it was probably something systemic. I'm just saying that with most MS cases presenting in a relatively typical fashion (a sudden onset...
  16. dan062

    How does dysautonomia cause leg weakness?

    Thanks, @adreno, this is fascinating. Unfortunately (for us) yet another biomarker only testable in research settings at present, but I think the theory is particularly cogent. Strangely enough, I find any explanation that takes the mystery out of CFS/ME to be oddly comforting. I've always...
  17. dan062

    How does dysautonomia cause leg weakness?

    I think one of the 'weirdest' things about ME, as practitioners must perceive it, is that the weakness is so variable and fluctuating. I've hard a really hard time explaining to a couple of people, without sounding crazy, that sometimes my legs feel like they are going to give out at any moment...
  18. dan062

    How does dysautonomia cause leg weakness?

    Thanks, @adreno, that does indeed help. As I wrote above, if there's no possibility that there could be a direct neurological cause, the explanation must be something to do with an endocrinological / HPA disturbance. I think that fits the bill pretty tidily and I'll look into those studies.
  19. dan062

    CrowdMed: how to get and give diagnostic suggestions for complicated patients

    @Little Bluestem That in itself is highly suspicious. If a neurologist(s) has failed to diagnose MS after presumably doing a comprehensive neurological physical exam and studying the imaging, how is a medical student / nurse (according to CrowdMed, their top two diagnosticians) going to...
  20. dan062

    How does dysautonomia cause leg weakness?

    OK, so vagal damage (causing loss of activity) has nothing to do with leg / muscle weakness? That's what I deduced by looking at the anatomy diagrams but I wanted to make sure, as I mentioned, that dysfunction in the vagal nerve couldn't simply carry over into the leg innervation through some...
  21. dan062

    The Gut Microbiome and the Brain - Galland

    I think there's a very big difference, with pretty profound implications, as Van Elzakker has been saying that directly treating an infection of the vagus would be extremely difficult at present (hence if the hypothesis is correct his suggestion, treatment wise, is focusing on suppressing the...
  22. dan062

    How does dysautonomia cause leg weakness?

    I was having a look at the vagus nerve, and the ANS in general, last night. For those that don't know, it's the tenth cranial nerve which acts as a conduit between the brain (it terminates in the brain-stem) and the immune system (it ends in the colon, host to 80% of that). As it's the main...
  23. dan062

    Is it correct to say ME is really EDS ?

    See http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
  24. dan062

    Is it correct to say ME is really EDS ?

    Agree with @Kina I think the only variant of EDS without the hyper-motility (which, of course, is a very obvious and distinctive finding for EDS) is type iv (vascular), which is both extremely rare (1 in 100,000 - 250,000) and characterized by its own distinctive facial appearance and unique...
  25. dan062

    Symptoms and results. Please help.

    You're almost definitely correct about this. As a CNS process, I don't think a primary dysutonomia would drive up inflammatory markers in the peripheral blood. The same could said for MS. If there are inflammatory markers in the blood circulating around your body (the peripheral blood), as...
  26. dan062

    The Gut Microbiome and the Brain - Galland

    " Gut bacteria directly stimulate afferent neurons of the enteric nervous system to send signals to the brain via the vagus nerve. Through these varied mechanisms, gut microbes shape the architecture of sleep and stress reactivity of the hypothalamic-pituitary-adrenal axis. They influence...
  27. dan062

    Symptoms and results. Please help.

    Reactive arthritis (Reiter's syndrome) would seem like another very strong possibility here -- CRP and ESR are usually pretty well elevated. Any joint pain? (I'd be pretty sure that you're doctors are considering this if you do). ETA: D-dimer seems to be associated with some coagulation...
  28. dan062

    Symptoms and results. Please help.

    This is a good suggestion. Particularly if this all started after a sore throat. Complement levels would be useful to work this up AFAIK. What are your doctors saying? You've had quite a few significant positives (or so it would seem) so I can't see them just giving up on this. Unless that's...
  29. dan062

    Symptoms and results. Please help.

    @breeisreallyawesome @melamine Yeah, the findings from the C-spine are nothing to worry about. There's tons of minor things like desiccated disks, facet joint hypertrophy, and degenerative disk disease (I have all three!) that MRIs pick up. They're just too sensitive (these are called...
  30. dan062

    Symptoms and results. Please help.

    Also, only because you do have the positive inflammatory markers, ask to get an ANCA run. Along those lines (really unlikely): Any strange red marks appear when you're exposed to the cold (if you've tested negative for rheumatoid factor you can probably forget this one)? Absent pulses in your...