• 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. C

    Log: MCAS with Primary Immunodeficiency

    My histamine is not typically high, but prostaglandins and VEGF and some other markers are often very high when randomly tested.
  2. C

    Log: MCAS with Primary Immunodeficiency

    Wow, good luck!! Do you mean Rituxan or Bortezimub??
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    Rituxan Number Three, Some Improvement, Still Early to Tell

    You are not alone :)! I hope the Rituxan helps!!
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    Rituxan Number Three, Some Improvement, Still Early to Tell

    I hope it works for you!! I'm definitely better, but it's still a tad early to know the full extent of how I will feel without the offending ABs. Also, I need to re-test ABs using CellTrend and Cunningham Panel in a few mos- will let you know if they decreased as we have hoped. Also, I just...
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    Log: MCAS with Primary Immunodeficiency

    ' I have MCAS and EDS as well, lifelong struggles with both these issues. I also did Genomind and found out I was an ULTRA RAPID METABOLIZER of CYP1A2 and CYP2C19, which I found interesting (in terms of intolerance to many drugs/supplements). I don't think in my case it's all MCAS...
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    Log: MCAS with Primary Immunodeficiency

    Thinking of you with fingers crossed! Very hopeful!! The H1 blockers seem important- can you do any type of benadryl if you can't take zyrtec? I know of a few people who have found H1 blockers without fillers- I will try to ask them, although they aren't doing so well ATM, so I don't know...
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    Rituxan, 10 weeks in and no major changes yet

    Rats! I have to say I felt better after my second infusion (late November), then was having a lot more pain and whatnot in February. So, it could have been a return of B cells (don't know yet until my labs come in from last week, just before my 3rd round of Rituxan). I also have been doing a...
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    Rituxan, 10 weeks in and no major changes yet

    Yes, I want to hear how you're doing!!
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    Rituxan Number Three, Some Improvement, Still Early to Tell

    I forgot to mention that I've tried many, many other treatments, including about 100 FMTs from a screened donor. Many treatments have helped, as I used to be bed and wheelchair bound, but I'm not back to "normal" which was, in the past, highly athletic and active.
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    Rituxan Number Three, Some Improvement, Still Early to Tell

    At Center for Complex Diseases, their experience is that it takes 4-6 months (usually) to see major improvement, if you're going to respond. They say that they've had non-responders, but have not had a patient permanently worsen from Rituxan. I have neuroimmune disease, Lyme/other TBD...
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    Rituxan, 10 weeks in and no major changes yet

    At Center for Complex Diseases, their experience is that it takes 4-6 months (usually) to see major improvement, if you're going to respond. They say that they've had non-responders, but have not had a patient permanently worsen from Rituxan. I have neuroimmune disease, Lyme/other TBD...
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    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    I agree- I think Dr. K was reading off of a teleprompter or something for the purposes of the video :).
  13. C

    Log: MCAS with Primary Immunodeficiency

    Hi @Gingergrrl! When I said "booster", I meant the maintenance doses after the initial two doses. I'm pretty sure the RA dosing is what I'm doing, but I will ask about this after my second 1 g dose in two weeks: https://www.gene.com/download/pdf/rituxan_prescribing.pdf Wow, my immune system...
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    Info re: shortage of IV and injectable Benadryl in the US

    Ugh, I wasn't aware of this, but IV Benadryl + Ativan are the only anesthetics I can tolerate if I need a procedure, in addition to needing IV Benadryl for infusions. I will write Scott Gottlieb and my senator.
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    Log: MCAS with Primary Immunodeficiency

    See above- sorry, I probably messed up the reply ordering :).
  16. C

    Log: MCAS with Primary Immunodeficiency

    @Gingergrrl, I don't think most people test for the B-cell subsets initially because Rituxan seems to be becoming first line treatment for AI diseases. If it doesn't work, I suspect deeper digging will have to be done. Then, there are B and T cell interactions that are as yet unknown.
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    Log: MCAS with Primary Immunodeficiency

    Here's a video and paper that I found helpful, although the above chart is really specific/clear: https://journals.sagepub.com/doi/full/10.1177/1756285617722347
  18. C

    Log: MCAS with Primary Immunodeficiency

    I asked about plasmapharesis in 2017 when my Cunningham Panel came back all positive, but that hadn't been tried in ME. That being said, I know of one ME/AE patient on the East Coast with neuropsych symptoms who had tried it (not successful for her). I gave my doc a 2018 paper on AE treatment...
  19. C

    Log: MCAS with Primary Immunodeficiency

    What kind of induction protocol are you doing, 2 or 4 weeks? I'm pretty sure it's the RA protocol of 2 doses of 1 g twice, two weeks apart, with subsequent B cell testing and booster dosing at 24 weeks. I remember in the past discussing with Dr. K the fact that the Norweigans were doing half...
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    Video Dr Kaufman Diagnose ME/CFS - What criteria does he use?

    He uses diagnostic criteria as well as lab work- history is most important, but he will check arginine vasopressin, NKC function, and many other things based on each patient's history/symptoms (lots of infectious disease testing, autoAB testing, immune function testing, skin punch/SFN testing...
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    How to get prescribed Rituxan?

    My insurance approved Rituxan immediately. I had been on SubIgG for almost a year with initial improvement, then aggravation of my illness. I have 15 unconventional autoantibodies, CVID, neuroimmune disease, MCAS, Lyme, and basically AE (adult PANS/PANDAS with all positive Cunningham Panel)...
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    Log: MCAS with Primary Immunodeficiency

    I did 30 g SubQ IgG for six months, trying to work up to maybe 125-150 g IVIg for 15 strongly elevated autoantibodies (all CellTrend autoantibodies, all Cunningham Panel autoantibodies, plus some Sjogren's ABs). I have MCAS and neuroimmune disease, and had Lyme and co-infections (which seem to...
  23. C

    Gene mutation, vitamin D receptors, decreased RNaseL... .

    Yes, if you test low in C3 and/or C4, it is further evidence of an autoimmune process. When I was healthy and exercising a lot in 2007, my regular MD randomly tested my vitamin D (been mostly vegan since 14 and wear a lot of sunscreen) and it was 4 (can't remember units, but normal goes from...
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    Gene mutation, vitamin D receptors, decreased RNaseL... .

    I totally agree about pathogen reactivation possibly playing a part in perpetuating the illness rather being responsible for the illness kick-off. There's also the possibility of HERVs. But, like I said, my doc had some ME patients who tried Raltegravir without success. Perhaps other...
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    Retroviral Infection of B Cells in ME/CFS Patients (DeFreitas) Use of Rituximab???

    Maybe... I took Valtrex and Famvir for a year and it did nothing for my ME, although it possibly helped my high HS1 and VZV titers. It's not effective against HH6, EBV, or CMV. Valcyte is, though (although I know a number of patients who didn't respond to that either, even though it brought...
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    Retroviral Infection of B Cells in ME/CFS Patients (DeFreitas) Use of Rituximab???

    I'm curious about the time lag. I was under the impression that many people who ultimately responded to Rituxan in the Fluge and Mella studies worsened first, then improved months later. They had mentioned that it could take 6 months for the offending autoantibodies to be cleared. One would...
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    If there were no barriers, financial or otherwise, what treatments would you try

    I do FMT at home. If you can get a donor and have them screened, it's very easy. Send a message if you are interested in more info. I started a YouTube channel and posted a video about how to prep stool in an enema bag for FMT. I do think it helps quite a lot, but I'm on long term abx and it's...
  28. C

    Familial CFS & schizophrenia

    The schizophreniza and other neuropsych stuff run in my family, but my niece and I are the only ones with unusual MCAS and neuroimmune disease.
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    Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

    Possibly, but then some patients seem to respond positively to Mestinon. I'm sure there's undiscovered autoimmunity going on in a lot of patients. Kenny DeMeirleir says as the illness progresses, it becomes more autoimmune with time. I had low vitamin D and c3-c4 at least 5 years before I got...
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    Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

    In addition to the mostly high autoantibodies to cholinergic receptors, I have low IgG subclasses 1 and 3, like a number of other ME/CFS patients I know, yet the Berlin study reports the opposite, that a high correlation was found between levels of autoantibodies and elevated IgG1-3 subclasses.