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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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  1. kyzcreig

    Amenamevir: Novel antiviral against herpes virus family approved in Japan

    It is currently available on Science.bio: https://science.bio/product/amenamevir-powder/
  2. kyzcreig

    HSCT Treatment for a Subset of ME/CFS?

    HSCT cures autoimmune diseases by resetting T Cell Receptor and B Cell Receptor diversity. Rituximab does not do that and is not a cure for many (most?) patients. HSCT cures most autoimmune diseases in most patients.
  3. kyzcreig

    CTLA4 Mutations & Orencia?

    I would be willing to try this, has anyone else tried it?
  4. kyzcreig

    Rituximab for MCS and CFS

    Hi, Thank you, all is well. 1) Stem cells helped damped symptoms but did not make them go away like Rituximab did. So a headache was still possible but it wouldn't feel nearly as bad, it was minor. The benefits of UC-MSC only lasted about 2 months and faded after 1 month. I wouldn't recommend...
  5. kyzcreig

    Rituximab for MCS and CFS

    You're welcome. I almost forgot. I tried one other therapy: Tocilizumab (Actemra) - an IL-6 inhibitor It dampened my symptoms like migraines from certain foods but was not more effective than UC-MSC or Rituximab. It is much cheaper though.
  6. kyzcreig

    Rituximab for MCS and CFS

    Yep so far rituximab has been the best for me. Taymount has 30+ donors. All the transplants are from different healthy donors to give you a wide spectrum of microbes. It’s not customized for you per se, it’s supposed to replace your biome.
  7. kyzcreig

    Rituximab for MCS and CFS

    A few updates 1) I tried UC-MSC Stem Cell therapy in Panama at Riordan's clinic. It dampened all inflammatory symptoms. Pretty remarkable and effective but didn't eliminate sensitivities, just dampened their severity. Rituximab eliminated some sensitivities entirely. 2) I tried FMT at the...
  8. kyzcreig

    Rituximab for MCS and CFS

    I may still resume Rituximab but I want to evaluate other therapies first, like stem cells and FMT.
  9. kyzcreig

    Rituximab for MCS and CFS

    So brief update, I skipped my Rituximab treatment scheduled in Q1 2018. There were a few reasons but it amounted to not being able to leave the country for several months. After about 7 months of not using Rituximab a few of my B cell markers had recovered and I decided to try something new...
  10. kyzcreig

    Is there BH4 supplement/medicine?

    1) NootropicSource does not test their products: 2) Their BH4 is improperly stored at room temperature. So it will degrade in a matter of days, even if sealed air tight. I confirmed this by ordering a sample. It was shipped without any cold pack or insulation and makes zero mention of storage...
  11. kyzcreig

    Rituximab for MCS and CFS

    I returned from Taiwan 2 weeks ago. I did a full course of IVIG, 2g/kg body weight over 5 days (~30g/day). I had the same immediate improvement in environmental and food sensitivities. But it wasn't qualitatively better. I didn't notice any benefit over the 10g doses I was doing in the USA. I...
  12. kyzcreig

    Rituximab for MCS and CFS

    I think you overestimate the USA, it's just as bad if not worse than the UK for off label therapies. You'll have just as much luck finding a doctor that can help there. I would reach out to Dr. Myhill, I don't think she takes new patients but maybe there is an affiliated physician that would...
  13. kyzcreig

    Rituximab for MCS and CFS

    And you wouldn't be a millionaire very long if you paid this out of pocket It's been 8 days since I did a small dose of IVIG. I've noticed the benefits are wearing off. Food sensitivities returning, etc. It's remarkable how effective it was. I'm currently researching its MOA more for ideas on...
  14. kyzcreig

    Rituximab for MCS and CFS

    Regarding Rituximab, not much has changed. Environmental and food sensitivities improved 20-30% in weeks 3-4 and then plateaued at 15-20% ever since. Some patients don't note improvement until 3 months in. I am 2 months in now (61 days). I am doing HBOT occasionally and see major benefits, but...
  15. kyzcreig

    Rituximab for MCS and CFS

    Possibly. It is a very fast onset. Certainly liver effects are at play.
  16. kyzcreig

    Rituximab for MCS and CFS

    I have not. I tried other kinds of Ozone therapy but only noticed anything with with IV Ozone. Have you tried it, did you how does it compare to IV Ozone? :) Yes HBOT is amazing. Rituximab was cheaper and had more/better research for CFS. Also, the doctors didn't like the idea of IVIG. I...
  17. kyzcreig

    Rituximab for MCS and CFS

    Update: It's been 6 weeks since first infusion. The reduction in sensitivities and fatigue peaked in week 3-4 and has plateaued or decreased slightly since. I am better but I am looking for at least >90% recovery. I am currently investigating IVIG, I may try a small amount in the USA and then...
  18. kyzcreig

    Rituximab for MCS and CFS

    Interesting work, no doubt the future. Though I think we need more data. If we had comprehensive genomic and epi-genomic data we would very quickly get to the bottom of the "what" in syndromes like this. The latter epi-genomic technology is still a few years from reality and much farther from...
  19. kyzcreig

    Losartan -- TGF-b Inhibitor for ME // Any success?

    I notice benefits but they don't last. In my case I have elevated IL-17, indicating elevated TH-17 differentiation (R). The combination of TGF-b and IL-6 induce differentiation of naive T cells to TH-17. I also have elevated PBMC IL-6. So, it would stand to reason Losartan is reducing...
  20. kyzcreig

    Rituximab for MCS and CFS

    I am still seeing them, it's just slow. Given the opportunity to do the same treatments for less money, I did. @Jonathan Edwards gives an accurate and level-headed perspective. To add color, since onset I have had autoimmune markers, for the first few years ANA never topped 1:160. This was...
  21. kyzcreig

    Rituximab for MCS and CFS

    I apologize I don't mean to undermine that effort. What I meant was many illnesses present chronic fatigue, not just the unexplained one(s) that are associated with CFS. That CFS is unexplained is partly what defines it. If a biomarker is discovered for Rituximab responders how will we refer to...
  22. kyzcreig

    Rituximab for MCS and CFS

    A unique diagnostic marker is needed. The discovery work being done on PDH (carbohydrate metabolism) is in the right direction. Unfortunately this won't capture everyone. The list of illnesses that can present like the criteria you linked is long and multifactorial. It's likely CFS encompasses...
  23. kyzcreig

    Rituximab for MCS and CFS

    Re: CCC Criteria IMO this is still very non-specific criteria. But yes I qualify on all 7 categories. I could get much more detailed. For example: Muscle pain is short and transient, I will feel pains in my heart, arm or hand. But not the pins-and-needles neuropathy type of pain. I do get...
  24. kyzcreig

    Rituximab for MCS and CFS

    I will play subsequent infusions by ear. I would have to fly back. I am of course trying not to get my hopes up but I have seen remarkable improvement already and even if I return to baseline next week it would have been worth sharing/experiencing. I have a list of therapies I would still...
  25. kyzcreig

    Treating MCS (Environmental Sensitivities) with Rituximab

    I have written my experience in the Rituximab forum: http://forums.phoenixrising.me/index.php?threads/rituximab-for-mcs-and-cfs.53154/ In short I am seeing a marked decrease in environmental and food intolerance.
  26. kyzcreig

    Incredible improvements with Helminthic Therapy

    I am 3 weeks into rituximab and seeing significant improvement, to avoid derailing this thread I have written my experience in the following post and will continue to track my progress: http://forums.phoenixrising.me/index.php?threads/rituximab-for-mcs-and-cfs.53154/
  27. kyzcreig

    Rituximab for MCS and CFS

    I am currently 3 weeks into Rituximab for CFS and MCS (multiple chemical sensitivity). I am seeing a 25% reduction in symptoms, greater than any therapy I have tried. I will periodically update with how I am doing. According to Fluge and Mella case studies CFS patients that respond see benefits...
  28. kyzcreig

    Incredible improvements with Helminthic Therapy

    After reading this thread in February I bought 5 helminths (NA) and evaluated for 14 weeks. Symptoms got worse, I saw no benefit after 14 weeks so I killed them with anthelmintic drugs. I was also impatient to try other therapies as this one had only made me worse. The days after I killed the...
  29. kyzcreig

    High Figlu despite high dose MTHF, why?

    I do have low Cysteine on my Amino Acids test. But I have high sulfates, so I'm wondering if there's an issue with the CDO enzyme. Or if the sulfates could be caused by something else. I don't feel well if I take cysteine or thiol supplements in general, except glutathione, but even too much of...
  30. kyzcreig

    High Figlu despite high dose MTHF, why?

    I've read about folate cellular transport but don't remember any actionable conclusions. I have high serum folate so this would be consistent. Do you have any ideas on what to try/research? For MTR, why would sluggish activity result in high methionine, wouldn't methionine levels depend on the...