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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. minerva

    Any experience with balloon sinuplasty?

    I had my deviated nasal septum corrected with sinuplasty, after a year of chronic sinusitis. Great results. I was still crashed for a few weeks afterward, but I no longer snore, sleep better and my nose is now more symmetrical.
  2. minerva

    Update!

    I am doing the cupping one to three times a week and, with Valcyte, it makes me feel amazing. I have incredible cognitive clearness, like pre-illness. Still have a lot of physical problems and spasticity in my legs is not gone. But this is a marathon, not a sprint. The cupping helps so much --...
  3. minerva

    Update!

    It is good to hear this honest appraisal. I am on Valcyte right now and preparing to going on Rituximab as well. Except I am flaring SO BAD in my first three weeks of Valcyte treatment that adding another harsh treatment sounds just impossible to me. Frightening even. I am actually seeing...
  4. minerva

    Rituximab in the USA - Dr. Kogelnik

    The Genentech (the US distributor of Rituximab) patient reimbursement program is really generous. I don't use it for Rituximab, but for Xolair, an injection drug for chronic urticaria and high IGE. As long as you make under $100k and your insurance denies you for their drug (or you don't have...
  5. minerva

    In Memory of Patrick Kelly/hubcap_halo

    It's called survivor guilt. Soldiers who survive wars when their buddies die (or are severely wounded) have it. Natural disaster survivors whose families die have it. It can be a big part of PTSD - wondering why you got out and others didn't. I bet it's one reason that recovered ME/CFS patients...
  6. minerva

    MCS / reactivity to kitty litter and waste -- help?

    I've had an unfortunate revelation behind the sudden increase in sensitivity to my cats. It is the ammonia, which I appear to be very allergic to (the joys of MCS) -- I got red welts when I laid down on the couch and very itchy eyes. I did some investigating and suspected that the kitten we...
  7. minerva

    Mayo Clinic - need UR stories!

    I went to the Mayo Clinic after being diagnosed with Trigeminal Neuralgia by one of the country's leading experts on the disease -- actually, after scheduling a surgery with him and freaking out about having brain surgery before getting a second opinion from some place big like the Mayo Clinic...
  8. minerva

    MCS / reactivity to kitty litter and waste -- help?

    This is great info! I am already taking 7.5mg of Deplin and injecting ~3mg of b12 a day (I have MTHFR), which is a recent development and may have triggered methylation overdrive and thus the MCS and intolerance of my kitties. I think it's a good thing overall, but it's rough in the beginning...
  9. minerva

    Has Anyone Seen Dr. Kogelnik?

    Rituxan Trial Hi two posters above -- Do you know if the Rituxan trial that Dr. Kogelnik is doing requires the patient to pay for the drug? Or is it subsidized by Roche? I had heard before that it was going to cost a patient $20,000. Thanks for any information.
  10. minerva

    MCS / reactivity to kitty litter and waste -- help?

    I love my cats, but recently the smell of their box has been absolutely overpowering for me. Instant migraine trigger, overpowering smell (others do not smell it), nausea. This happened while using the litter we've been using for a long time (the thought-to-be-hypo-allergenic World's Best Cat...
  11. minerva

    Lymphoma as ME result.

    I did, just got over a terrible cancer scare. I've been sick since 2008. My endometriosis got way worse after I got sick (it was managed with birth control pills before) and I had a hysterectomy. I went in for an annual on Oct 18, gyn found a mass when I complained of some pelvic pain, whole...
  12. minerva

    Endo, menopause and lactating! Pituary! Could this me ME related? Help!

    An update. I went to a gyn-oncologist who specializes in post-menopausal women and enometriosis after the imaging showed a big mass attached to my vaginal cuff -- very atypical. Endo has definitely returned in other places, but the mass may not be endo. My regular gynecologist couldn't figure it...
  13. minerva

    Endo, menopause and lactating! Pituary! Could this me ME related? Help!

    I'm 30 and in surgical menopause. After I fell ill with ME, my endometriosis got much, much worse until a total hysterectomy was my only option -- I was bleeding so much I had blood transfusions and could no longer tolerate Lupron injections (I could tolerate them before I was ill) to keep ttthe...
  14. minerva

    Possibile intentional community in Reno? Or elsewhere in the US?

    Hey, I know this idea has been thrown around before (most recently and prominently on Dr. Jamie's blog), but it struck me as a really good one. Is anyone else with neuroimmune disease interested in starting an intentional community (or, hell, just sharing a house with caregivers and air...
  15. minerva

    Seeing Dr. Klimas or going to the WPI?

    Unfortunately, I think the jaw problem has been taken as far as it's going to go -- the jaw surgeon has demanded I need more immunological testing and believes what he encountered could be at the core of what's making me ill, my doctors say I've already had everything they can do, the immunology...
  16. minerva

    Seeing Dr. Klimas or going to the WPI?

    Hi. I have been ill with ME (sudden, viral onset in 5/2007) for almost 4 years, severely ill for a year and a half. My worst problems are orthostatic intolerance and immune. Since 2009, I've had persistent jaw bone infections that have caused me to lose 1/8th of my jaw bone, reject grafts, and...