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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. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    @Gingergrrl, well, I'd say that depends on what type of MCAS medication you are taking... Are you taking antihistamines and/or other meds whose job is to block the mast cell's chemical mediators from binding with receptors? Or are you taking mast cell stabilizers, supposed to prevent the mast...
  2. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    @Jesse2233 , actually, I may have (sort of) failed the test for POTS… Maybe… However, I was diagnosed with dysautonomia, given that my blood pressure fails (or used to fail, it’s a bit hart to tell) to increase with physical exercise. Actually, I think this might be explaining why my...
  3. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    TLDR version, requested by @Murph :D - Was diagnosed CFS/ME from 2009 to 2016. - Turns out I had Mast Cell Activation Syndrome (MCAS) instead. - Used to be homebound, unable to cook my own meals, needed to have someone drive me and then push my wheelchair to get to medical appointments, etc...
  4. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    @Isaiah 58:11 , virtually all of my skin manifestations are extremely mild, and when Dr. Hyde saw the pictures, he clearly told me that none of them really meant anything taken individually... But what is odd is that they are all happening in the same patient (although not all at once). Sadly...
  5. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    @Murph, give me a moment and I'll try to see what I can do! (Ideally today!) Lol! Because yes I can see how this is really long and/or difficult to read. :D But yes, I do think that PEM might be an activation of the immune system, more precisely a pseudo-allergic reaction to physical...
  6. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    Hi @Jesse2233! No, Dr. Hyde used to call me his "mystery girl", because I hadn't been exposed to any enteroviruses, and most of the clinical findings did show that there was something "not quite right" happening with me, but they failed to fit any specific diagnosis. Until Mast cell activation...
  7. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    @anciendaze, alright, I've been trying to see if HKPP and MCAS might be linked, and this is getting way too specific and complex for me! Lol! All I've found thus far that MIGHT mean something, are basically that: - A mutation in the CACNA1F calcium voltage-gated channel subunit alpha1 F gene...
  8. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    You're welcome, @Wonko If you are looking for more in depth information, I would highly suggest this chapter written by Dr. Lawrence B. Afrin: https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf Otherwise, those articles provide excellent summaries, and are much more concise. :D...
  9. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    Sorry @msf! I didn't understand what you meant by that question! Well, first you have to define what you mean by "obvious mast cell issues". I didn't have "obvious mast cell issues", not the same way most MCAS patients that will experience flushing, intense rashes, and/or anaphylaxis have. -...
  10. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    @ScottTriGuy , more likely than not, you probably do fit Dr. Hyde's definition (though there are other criteria, like certain types of brain vascular injuries that can be seen with a SPECT scan). I typically try to be very careful in how I say that I don't believe that ME and CFS are the same...
  11. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    Something I've just realized! And my apologies if that wasn't clear, but excessive or very intense physical exercise can indeed increase inflammation in healthy individuals as well! When I'm talking about people suffering from chronic diseases getting relief from their symptoms through...
  12. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    @Wonko, I'm not necessarily excluding PEM caused by any other factors. Simply proposing a model of what might be happening in, perhaps, a subgroup of patients with PEM and/or the type of fatigue that is found in people with a CFS/ME diagnosis. Basically, I'm trying to understand how we were...
  13. Amelie

    The Stanford Paradox... Could it be showing a link between EIA and PEM?

    TLDR version available here. :D So I recently saw this entry on Health Rising ( https://www.healthrising.org/blog/2017/04/18/stanford-paradox-elevated-energy-production-found-chronic-fatigue-syndrome-mecfs/ ), and it got me thinking... We already know that physical activity can act as a...
  14. Amelie

    Is it worth me seeking ANOTHERRRRR medical opinion??

    As someone who was seen by 24 different doctors over the course of 7 years, I'd be in a very, very bad place to tell you to accept your diagnosis without trying to dig further into it. And, while I am also not the right person to tell you if you are or aren't suffering from clinical depression...
  15. Amelie

    For those of you who have a MCAS diagnosis, I was wondering...

    I fully agree with you, @Vasha , I really don't think there's a right or wrong answer to whether one should use only one or both of these diagnosis. I'm really trying to gain more insight into what other people believe, think, and/or feel more comfortable with in order to feed my own...
  16. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    Thank you for the suggestion @Vasha ! I'll be sure to look into it! :)
  17. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    @ukxmrv the answer would be no, yes, and sort of 'yes and no'. Lol! Just like with ME/CFS, since MCAS mimics a very large number of other diseases, you also need to rule out other causes behind the multi-systemic symptoms. However, given that all patients with ME/CFS should already have been...
  18. Amelie

    For those of you who have a MCAS diagnosis, I was wondering...

    Hi Vasha, First, I want to thank you for your very thoughtful answer! It really covers so much, and some points you brought up really resonate with my own reflections. In a way, leaving my ME/CFS diagnosis behind does feel like a bit of a double edged sword to me. If I were to keep it, then...
  19. Amelie

    For those of you who have a MCAS diagnosis, I was wondering...

    ...do you still identify as a ME/CFS patient, too? If yes, how do you make the difference between one syndrome, and the other? Given that MCAS can also be the cause behind the post-exertional malaise, brain fog, etc. And that, in my case at least, treating the MCAS has improved all other...
  20. Amelie

    What Is MCAS Like?

    @Never Give Up , if the reason why you are marking this one off the list is because you have very mild to no skin reactions / lesions; no anaphylaxis or anaphylactoid reactions that nearly require the use of an Epipen or hospitalization; no foods intolerance or allergy; no environmental allergy...
  21. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    My pleasure! :) I was actually seen by two other immunologists (including another one who was also an internist in clinical immunology and allergology), and both of them completely missed it! (Actually, I was evaluated / followed by a grand total of 24 different doctors over the course of 7...
  22. Amelie

    My experience with MCAS, and Xolair (Omalizumab)...

    Hi, my name is Amélie, and I’m also the person that Kati was referring to in her post here. I chose to start another thread so it could be put in the Mast Cell Disorders/Mastocytosis section – since I’m giving more information regarding what MCAS can look like, at least in my case, and not just...