• 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. ivorin

    Second visit to KDM - any advice?

    I'd just stop wasting money on him. Ex-patient who spent most of their savings and saw no change.
  2. ivorin

    My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

    I have ME, I'm the only one in the extended family with health issues.
  3. ivorin

    Invasion: the source of neuroinflammation in ME/CFS (follow-up to "Brain on Fire"

    This is indeed some interesting stuff. Hope = refueled.
  4. ivorin

    $1,000,000 donation to OMF!!!!!

    This is beautiful news, so happy to see OMF getting the funds it needs to keep things going.
  5. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    Hi everyone, doctor Kaufman had me stop all the meds and my state calmed down a bit. He still believes it was an MCAS reaction. We are going to start it again but much slower and step by step and see I get a reaction again. One thing I did add was Celebrex which is an anti-inflammatory as all of...
  6. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    @Rlman Thanks for the additional information, we haven't done the full Mayo panel, but we have done most of the antibody tests in it and they were negative. At first we were sure I have autoimmune encephalitis of some type but it just didn't show up in any tests. I will try to see what can be...
  7. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    Update: I am experiencing increasing chest and neck pains as well as neuro-mental issues. The meds I've been given, that I listed before don't seem to be helping at all with MCAS (which I don't believe I have) and could possibly causing me to feel worse. I feel very torn about submitting...
  8. ivorin

    Started Rituximab at OMI/Center for Complex Diseases

    @Gingergrrl It's beautiful to hear that you made it out of the Hellhole that is existing with these illnesses to a point where you're on the right track to live an actual life, I am very happy for you :) I do not have those symptoms, but I do have neuropsychiatric issues that Dr. K thinks are...
  9. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    @jeff_w Thank you so much for this, it is immensely helpful because I've had a lot of issues found in my cervical spine already by x-ray and this would fit the bill, especially since I did a lot of extreme sports when I was healthy. I will raise this up with him asap! I am much obliged, happy...
  10. ivorin

    Started Rituximab at OMI/Center for Complex Diseases

    It's not, but the costs with Genentech's help program don't come out that crazy. I have my mother with me, I am unable to care for myself for now, so i will definitely have someone with me :) That's exactly the plan. Hopefully I can make it and nothing bad happens. I still haven't finalized...
  11. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    @Gingergrrl The biopsy involves two punched holes of skin they check for small fibre neuropathy. It's done under anaesthetics so it doesn't hurt at all. I only had alpha-1 andrenergic and muscarinic 4 positive with a few more borderline. My Cunningham panel was much more indicative, which makes...
  12. ivorin

    Started Rituximab at OMI/Center for Complex Diseases

    I have almost the same ones as both of you. Starting RTX in 2 weeks.
  13. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    Today's update: I am positive on the Cunningham panel, the Celltrend panel and for Small Fibre Neuropathy (biopsy). Dr. Kaufman thinks my best chances are with IVIG and/or RTX. As we can't afford IVIG we will be going for Rituximab, starting in a few weeks. I am very scared of it but I have no...
  14. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    Hi, I really think that a story as similar as mine, there is no better option than Dr. Kaufman, he seems to follow where the tests point and really does try to address as much as he can. The costs are $650 first appointment (less for the following ones). $2000-$8000 for the tests. From next to...
  15. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    That's really interesting, thanks for sharing this :)
  16. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    @Gingergrrl I'm staying at least a month, or until we've found something that helps me and can be continued. I am very scared we won't find anything. I'm not sure I can handle coming back to Croatia with my state unchanged. I really hope we figure my case out.
  17. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    I've seen him once, but he took a long time going through my large existing lab results documentation, that's where he got his conclusions from. I'm seeing him again today, and we will talk about the first results and what else we need to do, I'll keep you posted. He chose Valtrex because both...
  18. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    How was he proven right? The test results or your response to meds? I'm only skeptical about the MCAS to be honest, even though I really want him to be right.
  19. ivorin

    Seeking information on long-term outcomes with Dr. Kaufman

    Okay, so I'm in California. Dr. Kaufman had me test for MCAS, the Cunningham panel and Small Fibre Neuropathy for now. He started me on Valacyclovir (antiviral), Rifaximin (SIBO), Allegra, Zantac and Zyrtec (MCAS) before the tests arrived. I haven't felt any benefit or detriment for now. I guess...
  20. ivorin

    Rituximab Phase III - Negative result

    Thank you for sharing this - hopefully they are still able to identify the subgroup it was helping - might proove beneficial going forward.
  21. ivorin

    Symptoms and Cortisol - a causal relationship?

    Sometimes, you run into a normal human being even among the psychiatrists. One I visited sent me on the path to a POTS diagnosis - the others thought I was "making up" having tachycardia and postural intolerance - they even diagnosed me with acute psychosis beacuse of it.
  22. ivorin

    Symptoms and Cortisol - a causal relationship?

    I experience the same, I have no idea why, there are many elements in the body that follow a circadian daily rhythm. For me, the cortisol doesn't seem to be the problem if the labs are to be believed.
  23. ivorin

    A 50,000 Foot Overview of Major ME/CFS Theories

    @Jesse2233 now that puts another light to the whole thing :D
  24. ivorin

    A 50,000 Foot Overview of Major ME/CFS Theories

    Do you have a link to this please? It sounds like my subgroup and I haven't heard of it before.
  25. ivorin

    A 50,000 Foot Overview of Major ME/CFS Theories

    Makes me sad how spot-on this is - we really are nowhere for the moment.
  26. ivorin

    23andMe - contribute my results for research?

    http://www.nova.edu/nim/research/mecfs-genes.html
  27. ivorin

    Lying down puts pressure on my body

    You can test it if you can measure your heart rate. If it rises by 30 or more from the lying position to standing up you probably have POTS.
  28. ivorin

    Lying down puts pressure on my body

    Yeah, I have POTS, postural hypertension and often experience palpitations, it's all sad and lonely, just the life we were given.
  29. ivorin

    Lying down puts pressure on my body

    I get pressure and a clutching feeling in my chest and neck. It doesn't happen every day but when it does it's quite scary. The only thing that helps is lying on the side or sitting up. It usually comes and goes throughout the day.
  30. ivorin

    Lying down puts pressure on my body

    I have a similar problem, I haven't been able to find anything that helps except changing my pose. I'm sorry :(