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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. lafarfelue

    2 schools of thought you will encounter with Mast Cell Activation Syndrome (MCAS)

    Thanks for responding, @Gingergrrl! I needed to pace myself in responding back. Please do not apologise about delayed response, it really is par for the course with us all, I think :) MCAS isn't even recognised in Australia as an actual medical disease (AFAIK). I'm in the process of tracking...
  2. lafarfelue

    Improvement of severe ME/CFS following surgical treatment of cervical spinal stenosis

    This is a ('the'?) big, important question. @JenB, are you and/or ME Action working on it or parts that can contribute to increased recognition of spinal links? I know you're writing successive articles about your experience and treatment, just wondering if there's something more of us might...
  3. lafarfelue

    Building Relationships: Meeting with Canadian Minister of Health

    well done, this is truly exiting news! :trophy: I hope you recover from the to-ing and fro-ing as quickly and smoothly as possible :hug:
  4. lafarfelue

    2 schools of thought you will encounter with Mast Cell Activation Syndrome (MCAS)

    Here is a good infographic for MCAS testing (I can't even get some of these tests in Australia, as far as I'm aware! :aghhh:) this may seem like a silly question, but how do you personally screen for whether they're genuinely open to learning (if they already don't know)? I'm looking for a...
  5. lafarfelue

    2 schools of thought you will encounter with Mast Cell Activation Syndrome (MCAS)

    From what I gather from MCAS patient-researchers, there are some MCAS patients who react to OTC meds and need specific prescription brands or compounded meds. Taking an allergen to test for a response can prove confusing and complicated for some patients. There'll always be patients who need a...
  6. lafarfelue

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    There's a bit of info about MMPs in relation to collagen here: https://me-pedia.org/wiki/Collagen and MMPs generally, here: https://me-pedia.org/wiki/Matrix_metalloproteinase
  7. lafarfelue

    The Tablet Mount That Turns My Bed Into a Home Theater

    I bought one of these at the end of last year. It has a shorter 'neck' than the image you've posted, but it's been seriously so great for watching stuff in bed (and for changing my sheets etc because I have less stuff to move around). I also use it to loop tablet, phone and laptop charger...
  8. lafarfelue

    Completely eliminated my severe anxiety symptoms with three supplements!

    I hope the information helps. This is a good and thorough online resource: http://www.mastcelldisease.com/ Also, if you are curious about it and don't want to/can't get tested, there are ways to methodically 'self test' for MCAS with OTC meds and experimenting/changing diet. Testing is...
  9. lafarfelue

    Completely eliminated my severe anxiety symptoms with three supplements!

    @DogLover might seem a bit of an odd question (and off-topic, sorry Hip!), but re your anxiety and response to benadryl... have you been assessed/tested for MCAS/MCAD?
  10. lafarfelue

    Tracking CCI / AAI MRI & Treatment outcomes

    I'm not on FB. I don't have the cognitive capacity to undertake this kind of thing anyway.
  11. lafarfelue

    Tracking CCI / AAI MRI & Treatment outcomes

    I just read a couple of your posts in other threads on your concerns re Gilete and better understand the context of your query. I hope you get some responses from anyone who's seen him! Semi-relatedly: It'd be interesting to see if there's a difference between what Dr Gilete sees as...
  12. lafarfelue

    Tracking CCI / AAI MRI & Treatment outcomes

    Recently, there have been a few people whom have had their MRIs assessed and been told they are not candidates. They have posted to these forums saying as much. I can't recall whom exactly, and there are way too many posts to scroll back through. Maybe @jeff_w is keeping better tabs on this, and...
  13. lafarfelue

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    I haven't read this entire thread yet, but thanks for putting this into text, @Murph. These are my feelings on this issue also. It's such a shame to see gatekeeping and what amounts to a kind of 'illness Olympics' within our chronic illness community.
  14. lafarfelue

    CFS Discovery Clinic

    I didn’t see your post/s before while I was drafting mine.. thanks for the info! Hopefully it’s ok that I just appear with a USB, but it doesn’t sound like it’s too difficult a process which is great. Ah dear, sorry to hear this. I haven’t even made it to see my GP yet. Really hoping I don’t...
  15. lafarfelue

    CFS Discovery Clinic

    Oh geez, that’s gotta be some wild times in that office. Yikes. I’ll see what I can do re: getting to the office. Unsure who to alert as no one is answering phones or email :o Would you mind letting me/us know how you go once you’ve been, please? Hah, yep that’s the one! It’s amazing to...
  16. lafarfelue

    CFS Discovery Clinic

    Thanks for the suggestion, @Mel9 ! Has anyone had any luck getting through to CFS Discovery about obtaining their own medical records? I haven’t been able to get through via phone or email. Concerned that all my testing etc will disappear.
  17. lafarfelue

    Curious about grocery delivery

    I have my groceries delivered. I’d lose at least 1/5th of my functionality and have a lot more pain and PEM if I went to the store to shop for food. Grocery shopping is the worst :grumpy: :pem: I order a fair bit of food around once every ~2wks. Having a decent sized freezer helps with shopping...
  18. lafarfelue

    Accessing Umbrellux DAO in Australia (or NZ)?

    That’s my understanding of it, that it only helps if ingested within 15min of eating. Sorry that you don’t feel it worth your while to continue, though it’s great if/that it helps with your transition to fermented foods! :thumbsup: Thanks for sharing your experience with it. For me it’s part of...
  19. lafarfelue

    Accessing Umbrellux DAO in Australia (or NZ)?

    Thanks @Judee . I’m wary of eBay sellers for supplements and pharmaceuticals (especially semi-controlled substances like DAO) but will check a few out to see if I can vet them properly. Beggars can’t be choosers. :meh: (As for Amazon, I’ve found it to be fairly useless in Australia so far...
  20. lafarfelue

    Accessing Umbrellux DAO in Australia (or NZ)?

    If you are in Australia (or NZ) and are using Umbrellux DAO, would you please let me know how you access it? Whether you buy it online or get it via a functional medicine professional or naturopath? Post here or do feel free to PM me if you are concerned about privacy. The company website...
  21. lafarfelue

    CFS Discovery Clinic

    No, sadly not. Before I knew of CFS Discovery, I tried the CFS whatever-it-calls-itself at the Royal Talbot, and that was beyond useless. If I hadn't already been reading up here at PR about GET and CBT, the GET treatments they were lining me up for (without my consent, as well!) would've...
  22. lafarfelue

    CFS Discovery Clinic

    I just received an email from the clinic that Dr Lewis wrote for his patients to pass on to GPs to help with continuing treatment. It’s so thoughtful. I was starting to worry about how to explain all my meds and supplements to my GP (who first suggested that I might have ME/CFS, so I trust...
  23. lafarfelue

    CFS Discovery Clinic

    Wow, I couldn’t get to my emails til just now and ... WOW. My heart sank. I’m so sad that no one’s been the right fit or keen to collaborate or take over. I also really hope Dr Lewis is ok. Me too. I hope they’ll be able to fulfill all the requests that will no doubt be flooding in. Wouldn’t...
  24. lafarfelue

    Income Protection Insurance Australia

    Ah, that's a shame, sorry to hear this. @AndyPandy how long ago did you refer another pwME to Maurice Blackburn? Are you still in touch with them? Just wondering if that person had a particular contact there that may still be practicing and contactable.
  25. lafarfelue

    Thiamin (Vitamin B1) supplements

    Unsure about alternative products with smaller amount in them... But! thiamine is soluble in water so you could (for example) dissolve the 100mg in 100ml and be able to dose yourself at 1ml for each mg?
  26. lafarfelue

    In Memory of Shawn Kregan (SK2018)

    Absolutely devastating. RIP Shawn. :heart: Nothing I say will convey the sadness and uselessness I feel at our and the world's loss. (I posted the above on another thread, I just feel that Shawn deserves as much recognition in this thread as possible.) Thank you for sharing the GoFundMe page...
  27. lafarfelue

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Absolutely devastating. RIP Shawn. :heart: Nothing I say will convey the sadness and uselessness I feel at our and the world's loss. re: decompression surgery It would be good to have some clarity with this, to avoid possible alarm. There are many different types of surgery, obviously, so we...
  28. lafarfelue

    20 patients now found positive for CCI / AAI, there must be many more...

    Man, I'm sorry you've injured yourself... I guess this is a personal request; please please PLEASE approach all treatments with more caution and look after yourself more steadily?? :eek: I think that 30 pounds suddenly would injure even a healthy person's neck and spine. :ill: It would be so...
  29. lafarfelue

    Jen Brea on whether some of us might be mis-diagnosed EDS patients.

    Seconding agreement, along with Gingergrrl. I really appreciated how you phrased this in one of your recent posts on Medium; getting this message out and understood more widely by patient and carer populations is really important. (Hopefully I don't cop flack from others for saying that...)...
  30. lafarfelue

    Supplementing E. coli

    The effects lasted longer (maybe 2 months of feeling worse than usual?) but the first 2 weeks were the absolute worst of it. It was like a heavy crash. My body felt like lead, I had really bad brainfog, sore throat, flu feeling etc. My guts were in overdrive... there was a lot of gas! I don't...