• 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. J

    Is anyone suffering like me - SFN/vestibular migraine etc?

    Thank you @BaileyBeached all very wise advice. I’m so sorry you have been bedbound for so long and have to have IV fluids for your PoTS. I completely understand what you mean about Midodrine giving you a boost. Probably part of my anxiety and depression is an autonomic thing. My PoTS and leg...
  2. J

    Is anyone suffering like me - SFN/vestibular migraine etc?

    Thank you so much @almost for your empathy and understanding. I’m not sure if many people fully understand our suffering. My mum’s partner said I’ll be ok if I just get my “mindset right”. But I know I have lots of willpower and ambition but just a failing body which I continuously get...
  3. J

    Is anyone suffering like me - SFN/vestibular migraine etc?

    Hi all I’m in a really bad way and looking for some emotional support please. I’ve had gradual onset ME since the age of 12 but only mild until aged 28 when I became severe. I improved a bit enough to do 12 hours work a week from home despite being mainly housebound/bedbound (after 1 year of...
  4. J

    SFN without pain?

    It depends what small nerve fibres are affected as there are several different types. For example your sympathetic nerve fibres could be affected but maybe the noiceptive (c-fibres) are not hence why you do not have pain but you have dysautonomia. I had a specialist nerve test called...
  5. J

    A case of COVID-19 accompanied by cherry angiomas

    I have them all over my torso and they seem to be popping up in other new places like my legs etc. It’s definitely hereditary in my case as my mum has them. But the speed at which I’ve got them is quite interesting over the last 5 years I’ve been severe/moderate and I’m only 33. There must be...
  6. J

    Thermoregulation and body temperature

    @HTester - I’m the same as @raghav, I sweat excessively on a daily basis but do not flush/go red. The hot flush I described in an earlier post was actually me describing the sensation of feeling like I’m internally burning up/hot a bit like how you feel when you are feverish. But I don’t visibly...
  7. J

    Thermoregulation and body temperature

    Lying back down would cause my hands to go warm eventually but once the sweating is triggered it can remain for most of the day. Although some days on occasion I don’t sweat at all so I’m unsure as to what’s driving it. The hot flush I experience in the morning with a posture change and even...
  8. J

    Thermoregulation and body temperature

    I’m not sure if the skin vasoconstriction is purely due to a lower core body temperature in PwME. It might also be due to autonomic dysregulation when posture changes. For example my hands are always warm when supine but merely sitting up in bed in the morning makes me have a hot flush and start...
  9. J

    Ground moving Sensation/Vibrating

    I get this sensation as part of my orthostatic intolerance/PoTS like the ground is moving when I’m standing or walking. It’s a lot worse in PEM. If I’ve had a lot of sleep deprivation and consequently in bad PEM I have experienced this not standing but just laying down on occasion. I know what a...
  10. J

    OI and mood fluctuations

    I have PoTS along with my ME and I have noticed that my mood significantly drops when in PEM. Often this is precipitated by standing and as you say a lack of blood flow to the brain. I don’t feel depressed at all just frustrated with my current situation. But I notice my mood definitely drops...
  11. J

    Metabolic trap: what to do / avoid ??

    @JES completely agree with you about SSRI/SNRI pharmacology over longer term use due to downregulation of receptors etc. However acute use certainly raises serotonin which is compounded if using other medicines with the same effect. I’ve seen serotonin syndrome once before in a patient and it’s...
  12. J

    Metabolic trap: what to do / avoid ??

    @Pearshaped that’s a good idea. Given that tryptophan is an essential amino acid I guess it may be a little “safer” to experiment with despite still contraindicting the trap hypothesis. Are you better with mirtazepine at lower doses as opposed to higher or are you referring to tryptophan...
  13. J

    Metabolic trap: what to do / avoid ??

    You read my mind. I was wondering the same thing today and was thinking about asking the following question: My widespread pain is one of my main compliants. I’m concerned about starting duloxetine (cymbalta) that I’ve had sitting in my drawer for months now because of the metabolic trap theory...
  14. J

    How many years before you had to quit work?

    A very valid point. Of course you can have acute onset with any variation of severity at which point you either plateau, fluctuate or gradually decline. I guess the opposite can happen too. There’s so many different patterns to the illness which will directly affect ability to work. Everyone’s...
  15. J

    How many years before you had to quit work?

    Hopefully you’ll see a pattern in the poll which demonstrates acute vs gradual onset. Mine was gradual so it took 10 years to go from very mild to severe where I had no choice but to give up work for a year. Now moderate and severe some days so can do limited work at home as long as I don’t move!
  16. J

    Autoantibodies against neuronal antigens (weak positive?)

    Yes we do. I’ve noticed improvements from the antibiotics, was bedridden/wheelchair bound and now not. I think the gut treatments are essential in maybe stopping us getting worse. But I think the inflammation/cytokine production is the main problem as has been explained to me. We have to hold...
  17. J

    Autoantibodies against neuronal antigens (weak positive?)

    Thanks @Aubry, it’s just he hasn’t checked these for me so I was wondering what his criteria are for running these. I also feel like Sjögrens could be a factor, I have super dry eyes on waking, PoTS, deep muscle burning, joint pain recently developed etc. Or is it all just ME?! Sounds like...
  18. J

    Autoantibodies against neuronal antigens (weak positive?)

    @Aubry - can I check why the dr has decided to check for neuronal autoantibodies as this is not usually routine? On what basis, was it particular symptoms etc? I’ve had the C3a and C4a tests done by redlabs and they’re low too. I’m not sure what the significance of this is.
  19. J

    A few POTS questions.

    Hi @Jackdaw - glad to hear you’re home from hospital. I also have PoTS and from the UK. I got started on bisoprolol 1.25mg a day and 6g of salt. The bisoprolol has controlled the tachycardia but not the dizziness and unsteadiness on standing. I also get more of an orthostatic headache now and...
  20. J

    Second visit to KDM - any advice?

    @ljimbo423 - that's ok that you disagree, you are equally welcome to your own opinion. Opinions should be guided by good quality research and only time will tell. @casino_4 - apologies that this discussion may of gone off topic and I hope you have enough information to help form your decision...
  21. J

    Second visit to KDM - any advice?

    I agree with all of the links that translocated LPS has in causing chronic immune activation, Fluge and Mella's proposed mitochondrial effects, blood-brain barrier permeability etc etc and how this may cause symptoms. These are downstream effects. However what I'm trying to establish is what...
  22. J

    Second visit to KDM - any advice?

    @ljimbo423 - whilst I agree with you that leaky gut/bacterial translocation and LPS chronically stimulate the immune system and therefore play a key and important role in the pathophysiology of the disease and symptoms, it cannot explain everything and is too simplistic on its own as a complete...
  23. J

    Second visit to KDM - any advice?

    If you are not 100% sure on taking antibiotics I know KDM has been supportive of others taking herbals. There was a paper showing they could be equivalent in efficiacy, but it probably depends on what microbial overgrowth you are targeting and how specific you need to be. However he does try to...
  24. J

    Second visit to KDM - any advice?

    @casino_4 - I’ve learnt this from information sought during my consultations but mainly from hours of reading his research, books, YouTube videos and lectures, conference abstracts etc. I made sure I was well informed before I decided to see him as I would before seeing any clinician. I...
  25. J

    Second visit to KDM - any advice?

    @casino_4 I have spoken to several patients who have improved with his treatment, some are completely functional again. However treatment is a slow process and takes time as treatments are not yet fully optimal but the best we have atm. The sibo is a consequence of poor immune functioning in...
  26. J

    Latest from Fluge and Mella: ME/CFS Immunosignature Identified

    Yes it looks like they’ve found a peptide similar to what Lombardi and KDM found back in 2016. Thankfully Lombardi and coworkers have just received the Ramsay award which is an extension to this work. It’s nice to see that similar work is being replicated now by separate groups.
  27. J

    Inner sense of bodily tremor

    I’ve also experienced this sometimes for weeks on end, then it would subside. I particularly notice it in my neck and head and upper body. It’s always at a low level and I notice it more so in bed. It increases in intensity when I turn over which is odd. It’s such an unusual sensation and quite...
  28. J

    Inflammation increases pyruvate dehydrogenase kinase 4 (PDK4) expression via the JNK pathway

    @Hip as others have previously said gut dysbiosis and potential bacterial translocation or the role of intracellular bacteria is a common research area atm for many ME researchers/clinicians. Whether or not they have published yet is a separate thing but Hanson, Armstrong, Lipkin, Staines, Maes...
  29. J

    Inflammation increases pyruvate dehydrogenase kinase 4 (PDK4) expression via the JNK pathway

    Thank you both for these fascinating papers. These are the foundation of what Prof De Meirleir has been saying for years. A large subset of ME patients having increased bacterial translocation, causing higher scd14 than healthy controls. The lps causes all of these downstream hypometabolic...
  30. J

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    With respect to publishing studies, yes I agree this is very important and should be done. However please tell me why the majority of ME physicians who currently treat patients in their clinics and have done for years, have not yet published research on their use of medications (whether...