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

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Search results

  1. Thinktank

    Constant anxiety/nerves/butterfly belly

    I always get that butterfly/anxiety feeling in the stomach when i have a bout of gastritis or an ulcer. Do you suffer from inflammation in the stomach or intestines?
  2. Thinktank

    C. Diff. + H. Pylori infection

    Recently i started to have a bout of what at first felt like gastritis, so i took a PPI for a few days without any relief. The stomach pain became worse and the inflammation developed into an ulcer, the PPI did nothing except for exacerbating the dysbiosis which led to a C. diff. explosion. So...
  3. Thinktank

    Does anyone here see Dr. Kenny De Meirleir in Reno?

    I've been a patient of his for many years in Belgium. Dr. de meirleir is a quack. He will diagnose you with whatever is trending at that moment. The problem is that because of his arrogance he can be very convincing, especially to vulnerable and desperate people. His following is almost...
  4. Thinktank

    Sleep apnea

    Same here! I am underweight and rarely snore. I had 4 sleep studies done, all came back inconclusive or negative. I tried to explain to the doctors that i don't sleep well with that damn computer around my middle and all the wires and tubes around my face. This prevents me from sleeping in my...
  5. Thinktank

    Is PEM exclusive to ME?

    My wife suffers from SLE and possibly Sjogren, and i can confirm she also gets PEM (not just fatigue) after overexertion.
  6. Thinktank

    Heat intolerance - common in ME/cfs

    It's been 4 years sincei started this thread and my heat intolerance has become worse each passing year. I still have not figured out how to deal with it except avoiding heat as much as possible including hot showers. When it's hot or even slightly warm i become weak, feel like i have the flu...
  7. Thinktank

    Filgotinib case studies

    Filgotinib has been on the market for over a year now. Thus far i have not found any case studies. Is anyone on the forum using filgotinib? Or perhaps know of any case studies, or experiences posted online by patients? Not just in relation to ME/CFS, but any other disease like rheuma, crohn's etc.
  8. Thinktank

    Severe pain after aterial blooddraw

    The PA told me the injury should not have happened, just a very bad job done and it can take 6 weeks or more for the tendons to heal. I'm thinking about suing the hospital for income loss....
  9. Thinktank

    Severe pain after aterial blooddraw

    @Judee , cold pack helps a bit. @Rebeccare, i have a feeling this will take at least two weeks to heal, if there's no infection. @Sushi, pain and bruising was told to me as well, but only for a few days and not this extreme.... I called the GP's office and they made an appointment with a PA...
  10. Thinktank

    Severe pain after aterial blooddraw

    I had an exercise stress test done with measurement of pulmonary function, ecg, blood gasses etc., the whole package. The result shows i have a very low VO2 max score, this kinda proofs that i become really tired easily and my muscles acidify quickly with exertion. All went well except for the...
  11. Thinktank

    David Noakes, CEO of GCMAF producer immune biotech jailed for 15 months

    Found this on wikipedia: https://en.wikipedia.org/wiki/David_Noakes He was extradited to France. Wow..
  12. Thinktank

    David Noakes, CEO of GCMAF producer immune biotech jailed for 15 months

    Update from last year: https://www.gov.uk/government/news/david-noakes-judge-orders-seizure-of-14-million Kinda harsh to call GcMAF a bogus cure but hey, FDA and big pharma...
  13. Thinktank

    Has anyone had a Covid vaccine yet?

    Does anyone know what the IgG-level range is to be "protected"? My wife has been double jabbed with moderna, IgG is at 4850.
  14. Thinktank

    Has anyone had a Covid vaccine yet?

    No it wasn't constant.
  15. Thinktank

    Has anyone had a Covid vaccine yet?

    I'm 4 weeks post second jab and returning closer to baseline. The first 3 weeks were quite bad, the vaccine triggered my asthma and IBD (or the underlying MCAS, probably an immune reaction macrophages going wild, a bit like the IRIS-reaction i got from GcMAF which caused my pro-inflammatory...
  16. Thinktank

    Has anyone had a Covid vaccine yet?

    @blueberry, 9 weeks is a long time... how are you doing now vs the first few weeks post-second jab? Any improvement? I will lose my job if i stay this sick for 9 weeks or longer. @Bergkamp, my reaction to the first shot was a lot milder. Some headache, mild fatigue and asthma the first few...
  17. Thinktank

    Has anyone had a Covid vaccine yet?

    I had my second shot Biontech/Pfizer on wednesday afternoon. That night i developed a headache and i felt fatigued. Sleep was terrible, constantly woke up, difficulty to breathe. Thursday - yesterday i felt completely exhausted. I had to stay in bed all day. Brain fog was and still is intense...
  18. Thinktank

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    How do you measure LPS in the bloodstream? Do you use the (soluble) CD14 test?
  19. Thinktank

    Anyone tried microdosing psychadelics?

    @Strawberry I have come across a website / database with detailed information on each strain but unfortunately i can't find it in my favorites right now. CBD doesn't do much for me either, i think i even feel more inflamed when consuming CBD oil. Weird.
  20. Thinktank

    Anyone tried microdosing psychadelics?

    @xebex 1 gram of dried truffles psilocybin mexicana, containing +/- 1.5mg of the active ingredient psilocybin. There's a difference between truffles and mushrooms. In my country truffles are legal.
  21. Thinktank

    Anyone tried microdosing psychadelics?

    Sorry to hear it has not worked out for you. Certain (not all) indica-dominant strains calm my nervous system. Sativa on the other hand quickly make me feel anxious and paranoid. Moroccan hash also reduces my anxiety quite effectively. I notice a profound anti-inflammatory effect from THC...
  22. Thinktank

    Anyone tried microdosing psychadelics?

    I've written about my dreadful withdrawal experience a few times on this forum. It has been an absolute horror and i'm still experiencing post-withdrawal symptoms 5 years after my last dose... My nervous system is in an ever elevated status. I can't explain in words how agonizing the whole...
  23. Thinktank

    Anyone tried microdosing psychadelics?

    I was about to post the same question. :) I took my first microdose of psilocybin (magic truffel) 1 gram last friday. As expected 1 gram was a bit too much for me, i felt quite high for a few hours. At first i noticed feeling really calm, then a short while later a sense of happyness came over...
  24. Thinktank

    Baclofen, an anti-inflammatory?

    Baclofen withdrawal can be brutal but it's nothing compared to benzodiazepine withdrawal. I still use baclofen only occasionally, if i overdo it my myoclonus starts to act up and i become much more sensitive to sound (hyperacusis). Years of benzodiazepine usage has affected my nervous system...
  25. Thinktank

    Anti-cholinergic vs cholinergic

    I've recently started with a new medication for my asthma called spiriva (tiotropium). It works well, i breathe better at night but the side effects are unbearable. It makes me feel anxious, restless and my mind goes in overdrive. I understand anxiety is one of the possible side effects of...
  26. Thinktank

    "Swish & Spit" AVProtocol

    no, i had to give up on the AV, too many side effects.
  27. Thinktank

    Feeling paranoid about dysphagia (inability to swallow) does anyone else have it?

    I've had dysphagia due to gluten intolerance. It was really scary at times, but the dysphagia has vanished ever since i cut out gluten completely from my diet. Last month I had some bread, pizza and other stuff for a few days in a row and the dysphagia came back, so i know for me that gluten...
  28. Thinktank

    Anyone had any luck with doxycycline?

    I took doxycycline for 6 months or so. It did nothing for my ME-symptoms. The only positive thing i noticed from docycycline was its anti-inflammatory effect. I was in total prescribed 12 different antibiotics in a span of 3 years to treat overdiagnosed lyme disease, antibiotics did nothing than...
  29. Thinktank

    Infected wound - don't want to use antibiotics

    The infection has finally healed but as suspected the use of the antibiotic caused a major setback. I'm now unable to work a full day. My muscles feel incredibly fatigued, i can't focus on anything and my IBD is smoldering. Everytime i endure a setback like this is takes a much LONGER time to...
  30. Thinktank

    Vital drug for people with lupus running out after unproven Covid-19 link

    A new study shows plaquenil in combination with azithromycin is ineffective against COV-19. It didn't perform better than placebo.