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

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  1. Fogbuster

    List of ME/CFS + POTS Related Autoantibody Panels (That Your Doctor Can Run)

    Unless I'm mistaken there's no POTS autoantibodies mentioned in this screening?
  2. Fogbuster

    Severe gut problems - No answers

    Discomfort above my belly button and below the ribcage which also radiates to the left side and my back. A burning sensation in that area too and in my chest. Chronic reflux. It is disgusting. I have burning mouth syndrome and tastes in my mouth that go between tasting like: metal, sweet, and...
  3. Fogbuster

    Have you tried ADHD medication? (Lisdexamfetamine)

    Hey @xebex i remember us discussing how elvanse worked well for you but pooped out. At the time I was talking to you I think I'd been on it for about 10 days or so, unfortunately after 3 weeks of being on 30mg the effects stopped. When it did work I'd feel its effects within minutes. I then...
  4. Fogbuster

    Has anyone here attempted to get tested for neurological autoimmune antibodies at the Walton Centre in London?

    https://www.thewaltoncentre.nhs.uk/129/neuroimmunology.html Must say I was quite impressed with the different tests they do for auto antibodies. Expensive to get all them done but seems worthwhile, at least for me. Has anyone gone down this road via the Walton Centre? Can it be done privately...
  5. Fogbuster

    You probably have an autoimmune disease...

    What kind of specialist tests for autoimmune antibodies?
  6. Fogbuster

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    This is a very well articulated post and an extremely important point to make. Thankyou.
  7. Fogbuster

    Have you tried ADHD medication? (Lisdexamfetamine)

    Ah I'm sorry to hear that : (. If you don't mind me asking, what's the opposite of adhd?
  8. Fogbuster

    Have you tried ADHD medication? (Lisdexamfetamine)

    Only 3 weeks so far : ). Have you stopped taking ritalin?
  9. Fogbuster

    Have you tried ADHD medication? (Lisdexamfetamine)

    Just to let you know, a low dose of vyvanse (30mg) prescribed for my new diagnosis of ADD has helped my orthostatic intolerance, CNS inflammation pain feeling from about a 7 to a 4, improved my social ability from about a 3 to a 6 and turned down my constant chronic sympathetic activation from...
  10. Fogbuster

    Has anyone found a reliable source of Cromolyn tablets from a no prescription pharmacy?

    Would be very keen to buy some as have heard its been great for some with cognitive issues and issues with good reactions. Thanks
  11. Fogbuster

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Can anyone recommend a reliable pharmacy that delivers within 2 weeks to the UK with standard delivery? Preferably one that sells abilify and naltrexone. I'm not really interested in paying £20+ for delivery. Many thanks
  12. Fogbuster

    Any good no prescription pharmacies that sell Low Dose Naltrexone?

    Thanks, it seems they only sell 50mg ones. I wonder why online pharmacies have stopped selling low dose as it looks like alldaychemist and a few others were selling it a few years ago.
  13. Fogbuster

    Any good no prescription pharmacies that sell Low Dose Naltrexone?

    Very good idea, thankyou. Does it need to be bacteriostatic water? What would you recommend as a container for the solution to be in? Many thanks
  14. Fogbuster

    Any good no prescription pharmacies that sell Low Dose Naltrexone?

    As the tittle suggests I'm looking for an affordable supplier of LDN that delivers to the UK in a reasonable time, that also requires no prescription. Any help would be greatly appreciated. Thanks
  15. Fogbuster

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Hey guys, really interesting thread. Thought it was worth sharing this article below on things to take that can reduce LPS levels. Surely it might be worth buying a few of the things listed in the article to see if it can help reduce general symptoms? As well as eating a less calorie dense...
  16. Fogbuster

    Ketamine cures my autonomic dysfunction, exercise and orthostatic intolerance - any idea why?

    Hey guys, As the title suggests taking S-ketamine puts my autonomic nervous system back into balance, it normalises my HPA dysfunction, allows me to exercise and be upright doing activities without my nervous system (and symptoms) going haywire. When I go for a 20-30 min walk with my dog under...
  17. Fogbuster

    Severe unrelenting brain fog and chronic fight/flight helped by Naproxen - why?

    Thanks for your response Judee. What supplement brand and dose did you use? Was it an extract? I consumed a relatively high dose of Boswellia made by swanson a couple of years ago and it didn't do anything really, but it wasn't in extract form so I might consider getting the Now foods one.
  18. Fogbuster

    Severe unrelenting brain fog and chronic fight/flight helped by Naproxen - why?

    Thanks very much for your response Patti. With regards to NSAIDS I've only tried Ibuprofen and the effect was minimal. Would the above suggest that I should look for a drug that strongly inhibits prostaglandins? Might this also suggest that mast cell activation issues are involved? Even if...
  19. Fogbuster

    Severe unrelenting brain fog and chronic fight/flight helped by Naproxen - why?

    Hey guys, As the title suggests I'm getting some relief from taking two tablets of Naproxen in the morning. It just turns off what feels like inflammation and chronic sympathetic overload about 40%, which is obviously significant as only ketamine has had a similar effect. I suffer with...
  20. Fogbuster

    Cortisol brought me back to life.

    @Gingergrrl @Learner1 Hey guys, this is a photo of my serum cortisol results. Please do let me know what you think and if this is worth investigating further... Many thanks
  21. Fogbuster

    Cortisol brought me back to life.

    Thankyou so much for taking the time to write such a thorough and helpful post, I'll respond to it when I'm a bit less foggy. :)
  22. Fogbuster

    Cortisol brought me back to life.

    And apologies for the slow reply, I didn't get a notification so didn't think anyone replied! I'm trying to find the piece of paper with the test results on, when I find it I'll take a photo and put it on here so you can see it. Hope that's alright.
  23. Fogbuster

    Cortisol brought me back to life.

    Thankyou for your response :). I recently got a copy of my records for insurance purposes and came across these results, when I spoke to my doctor about them I mentioned that in the notes section it said that dexamethasone was apparently prescribed to me, but I never received it. She then said...
  24. Fogbuster

    Anti-Neuroinflammatories: Dapansutrile (OLT1177) + Emapunil

    This sounds very interesting. I tried to join your discord link but it says the link has expired. Any chance I can join? Thanks :)
  25. Fogbuster

    Cortisol brought me back to life.

    Hey guys, could someone please help me with reading my cortisol and thyroid levels from tests I had done in 2018? Something doesn't seem right... I had a dexamathesone stimulation test and my serum cortisol level was 15 nmol and the reference range is 185-624 nmol. Doesn't that mean my cortisol...
  26. Fogbuster

    Can sinus or ear issues cause dysautonomia? Also does anyone else experience this strange symptom?

    Hey guys, I'm curious to know if anyone has read or heard of anyone recovering from autonomic dysfunction by having ear or nose issues corrected? My most concerning symptoms are constant severe cognitive impairment, orthostatic Intolerance, PEM, visual snow and just a very hyperactive nervous...
  27. Fogbuster

    Suitable alternative to IVIG in the UK to treat MCAS/POTS?

    I have not, will have to ask my cardiologist on the 30th.
  28. Fogbuster

    Suitable alternative to IVIG in the UK to treat MCAS/POTS?

    Interestingly enough I was accidentally prescribed it by my GP, I wasn't meant to be given it until certain tests came back showing that it was required, but those tests came back seemingly fine so I was given propanolol instead. The propanolol hasn't proven to be very effective at all, so...
  29. Fogbuster

    Suitable alternative to IVIG in the UK to treat MCAS/POTS?

    Thankyou for your helpful response, it's much appreciated. I'm seeing my cardiologist (who also specializes in autonomic dysfunction) on the 30th, so hopefully I'll be able to provide a positive update.
  30. Fogbuster

    Suitable alternative to IVIG in the UK to treat MCAS/POTS?

    Hey @Pearshaped, Fluoxetine, venlafaxine, propanolol, coq10, h1 & h2, cromolyn nasal spray, cbd oil, magnesium glycinate, electrolytes. Still horrendous brain fog, non stop varying fight/flight and forehead pressure on a daily basis. Electrolytes + lots of water have helped ease the headache...