• 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. P

    Hyperacusis causes and treatments

    I had a gradual onset of ME/CFS with significant hyperacusis, tinnitus, light sensitivity and muscle problems. It progressed to the point where I became completely bedridden and had to wear ear plugs 24/7 (and ear muffs on top of them) and have my room blacked out completely. We later...
  2. P

    started IVIG this week

    @viggster That's so great that you get to try this and Medicare covers it! I hope it provides you some relief! Did you have any fatigue in your muscles at all (i.e. do they feel like sandbags after exertion?) or was pain/tingling the more noticeable symptom?
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    Itchy Rash from EPA/DHA Supplement?

    I don't know anything about vegan omega 3s, but I can share my experience with a mystery rash. I randomly developed a rash around my face that spread to my chest in January.. It was somewhat oozy. It was itchy as well. I also got swollen lymph nodes in my throat and neck. I discovered that...
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    Strange reaction to probiotics, any ideas?

    Well I believe MCAS symptoms can range as a variety of different things... My personal symptoms are like allergy symptoms, itchiness and kind of a doom feeling. I also break out into hives and get very swollen lymph nodes around my jaw and throat, though that's more a delayed reaction. It takes...
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    Strange reaction to probiotics, any ideas?

    Do you get it with any other high histamine foods, like sausage for example? I developed a severe dairy sensitivity with similar symptoms as you after taking a long course of antibiotics, but my dairy symptoms come on later- when it hits my colon, so perhaps different than what you're dealing...
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    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    Ugh. But regardless of whether they investigated... If enough patients experienced harm, wouldn't that be enough? I suppose the problem is actually documenting the harm related to the treatment. Tagging our resident law brain @Valentijn
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    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    Forgive me if this is a dumb idea, but could patients that received CBT/GET through their Swiss Re insurance and were harmed... Could there be grounds for a class action law suit there? I've heard of being denied treatment grounds for a lawsuit, but I wonder if it could work the other way...
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    Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

    I wonder which multiple disciplines he has deluded himself into thinking he is using... Also this part made me LOL: Thank goodness Simon was there to hand out pamphlets convincing patients that his unproven and untested treatments actually worked!
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    I have a new MCAS Dr!

    Hi @Strawberry - not sure if you've already answered this elsewhere, but did you end up trying the cromolyn and if so, how did it go? I'm waiting for my pharmacy to get it in stock so I can try it, and of course scouring the forum in the meantime to see how others have fared :)
  10. P

    James Coyne: Should authors declare a conflict of interest...

    @Valentijn could the pace authors calling his department repeatedly be considered harassment? Also it almost seems like it's bordering on discrimination to try and undermine the credibility of a person's publication based on whether they have an illness by forcing them to declare it as a...
  11. P

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    @AshleyHalcyoneH thank you so so much for all the pictures. It is a wonderful act of service for those of us bedridden and isolated. It is so uplifting to be able to see what's going on. :angel:
  12. P

    Lauricidin

    @sb4 I have had some other things going on... (amoxicillin for a nasal staph infection, nystatin for a gut infection, regrowth of some ovarian endometrioma cysts, development of severe allergies and probably MCAS, discovery of a neurotoxic mold growing in our attic that was venting into my...
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    Do peppermint oil capsules help with CFS-related GI symptoms?

    If you are able, I'd consider seeing someone who specializes in SIBO and see what treatment they recommend. There are both herbal and pharmaceutical treatments. If it is SIBO, peppermint oil I believe helps relax your GI tract a bit, but I don't think it would actually kill the source of it. You...
  14. P

    CNS findings in chronic fatigue syndrome and a neuropathological case report

    @halcyon thank you!
  15. P

    CNS findings in chronic fatigue syndrome and a neuropathological case report

    Can anyone who can see the full text say the age and comorbidities of the patient? I don't see this sci hub link that @Kati mentions?
  16. P

    S. Wessely - Death threats, abuse, smear campaigns - Standing up for Science: 29 March

    If you spend your whole career getting hate mail, that might be a clue that you're doing it wrong...
  17. P

    Jonathan Edwards: PACE team response shows a disregard for the principles of science

    This article is so great it really does deserve its own thread!
  18. P

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

    I've thought a lot about this for myself as well.. I never excelled at aerobic exercise, even as a child. I didn't have anything resembling PEM and was ostensibly normal enough, but I never felt good after exercising- like when people talk about an endorphin rush or a "runner's high", I never...
  19. P

    Can SIBO cause or mimic symptoms of HIT, Mast Cell, CFS, Neuropathy, Brain fog and Inflammation

    I'm currently trying to figure this out as well, it's hard to separate what's what. I had symptoms of CFS first, then years later developed SIBO, and now am recently dealing with mast cell problems. We also recently discovered mold in our home, so it's hard to say if the mast cell stuff is...
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    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Thank you for this! I was wondering if the Kickstarter downloads would come before the PBS premiere and that answered it. This is true for me too, I think my main coping mechanism for dealing with the horror of this disease is just to try not to think about it...
  21. P

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I have tried Ox bile previously, and it made me feel quite a bit worse, though it did help my sluggish gut to move things through. Would that indicate a particular pattern one way or another?
  22. P

    Over Activation of Farnesoid X Receptor In the Ilium Driving Liver and Gut Disharmony

    I'll be interested in hearing your ideas as this resonates with me as well-- I've developed pretty significant gut, dysbiosis, liver and gallbladder problems since my disease onset that all seem to tie into one another. I'm wondering- are there any natural or herbal FXR antagonizers?
  23. P

    Chronic Fatigue Syndrome: Cognitive, Behavioural and Emotional Processing Vulnerability Factors

    It bothers me that journals don't hold themselves to higher standards in publishing this kind of thing. It feels like the "scientific" equivalent of tabloid journalism. How could anyone trained in science think this was worthy of publication? Granted maybe there just isn't enough (any?) high...
  24. P

    Which probiotics fix which conditions (+ sources)

    This is so cool! Would you mind linking the reference for the dairy allergy study? I developed a major dairy intolerance after a long course of amoxicillin and would do anything to fix it!
  25. P

    How I found the underlying cause of my CFS--anti NMDA antibodies

    @Shawn Very interesting experience, thanks for sharing! I'm curious if you ever had an ANA done and if it was positive.
  26. P

    Lauricidin

    An update from me: I've been taking around 10 pellets per day for about 2 months now, and haven't noticed any effect good or bad. I probably should try a higher dose and see if anything happens. I'm taking because of high EBV titers but I'm not sure that I actually have symptoms from EBV. This...
  27. P

    Paraneoplastic redux- calling anciendaze and gingerrgirl

    @Pyr2 I'm glad to hear you got an appt with a specialized oncologist, hopefully that will help get you a complete investigation. I don't know what the answer is, but my husband is a hematopathologist and I can't tell you the number of rare and unusual cases he comes home and tells me about, that...
  28. P

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    A thought: we've heard anecdotal evidence that pregnancy can put ME/CFS into remission or possibly reverse it. I believe it's thought that the surge in progesterone during pregnancy is meant to shift the immune system to prevent the body from attacking the fetus. However, I haven't heard of...
  29. P

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Re: the microbiome-- I wonder if there could be something to do with leaky gut or bacterial translocation that could account for the persistence of this state and why a pathogen has been difficult to detect. This might be a stupid question-- but I wonder if there are resident organisms in our...
  30. P

    Laura Hillenbrand: Leaving frailty behind

    It's quite a contrast-- reading this lovely interview with Hillenbrand by the chief communications officer of Stanford's school of medicine, and then compare that with the statement released from QMUL's PR department yesterday, along with all their tribunal evidence. Two well known schools of...