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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. J

    Low blood phosphorus

    @Howard I think you are totally right. It’s so typical that they would mess up the test like that and not listen to you. I can’t eat salmon because i’m a vegetarian but skimmed milk is apparently good for phosphorus so I will be upping that. I don’t expect my doctors to pay any heed but I am...
  2. J

    Low blood phosphorus

    @borko2100 So you haven’t had it investigated or anything? Do you take anything to up it?
  3. J

    Low blood phosphorus

    Of my ME? Because I am completely bedbound and have a lot. My ME started mild after a virus and gradually got worse.
  4. J

    Low blood phosphorus

    @Moof No, I don’t. Good thought though.
  5. J

    Low blood phosphorus

    Anyone on here had a low inorganic phosphate blood test result (hypophosphotemia)? I had a panel of bloods done recently and my phosphorus was low. Not hugely low, about 5% below the reference range. I don’t remember it being tested previously. I wondered how common a finding this is amongst...
  6. J

    If we have low blood volume where does it go?

    I wee like a horse so I guess that is why low blood volume occurs. 1.2 litres in one wee is my PB. :) I drink salt water which helps a bit and am hopefully starting Florinef soon. I am hoping that helps.
  7. J

    SCIG advice

    I know it isn’t covered by insurance in the US but people have received it for ME and I wondered what the usual dose was from the doctors that try it for ME. I don’t think I can afford the big doses. I am not in the US. Thank you for the information @wigglethemouse
  8. J

    SCIG advice

    Thanks @wigglethemouse Videos are tricky for me. Theoretically it is for autoimmunity but I know you can’t get the big doses on SCIG. I was wondering what sort of dose was usual when it was for ME in a vague hope it helps way. SCIG because it is way cheaper, I am very severe so leaving the...
  9. J

    SCIG advice

    If one was to try SCIG for their ME (because they couldn’t get IVIG :mad:) then: What is the ideal dose? How often should the dose be given? Is there any tests or meds that are needed to reduce risk? Any other info? If anyone has experience with SCIG in the UK I would be grateful to hear...
  10. J

    Delayed response when moving from sitting to standing - Bloodpressure?

    @Seven (formerly lnester7) That’s good news to hear. Even 3 months totally bedridden would of left you very deconditioned. How long did it take you to be able to walk a few steps? Were you able to get on to a commode beside the bed or were you using a catheter while unable to leave your bed? How...
  11. J

    Delayed response when moving from sitting to standing - Bloodpressure?

    @Seven (formerly lnester7) Just wanted to clarify you were totally bedridden (could not get out of bed) until OI meds? How long did it take to recover to being able to stand up?
  12. J

    Red, very hot patch of skin that comes and goes - explanations?

    I am used to weird ME symptoms but this is a new one for me. The skin on my arm around my elbow and area up the arm and down the arm a few inches occasionally goes bright red and absolutely red hot to the touch. It doesn’t itch, doesn’t hurt, doesn’t do anything but be hot and red. It lasts a...
  13. J

    Jennifer, whose story was told in the Daily Mail this week, has passed away, aged 31 years old.

    While I don’t know the facts in this individual case, it is not uncommon. Amongst the very severely affected there are deaths. They are often fairly young. This is something not spoken of nearly enough. But most bedbound sufferers will have lost friends or know of people who are being treated as...
  14. J

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

    @gm286 Yes, if you can do that, that would be very kind of you. Do you follow it and have you noticed benefits?
  15. J

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

    @gm286 I have become completely bedridden in the last 15 months after 14 years with ME. For the first time I am noticing problems with my connective tissue, some of my finger joints are bending backwards for instance. Whether this is caused by my ME being very severe I am unsure. I would like...
  16. J

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

    A demand for services they won’t be able to manage. And that is just the informed, privileged, sufficiently functioning tip of the iceberg.
  17. J

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

    We can’t draw a conclusion on whether someone was correctly diagnosed who has responded to these spinal surgeries because we do not know enough yet. Either CCI and spinal stenosis etc can present like ME but it is actually a totally separate structural disease. (This begs the question of...
  18. J

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

    @jeff_w Sorry if this question is covered somewhere in this thread but what can someone do if they can’t have an upright MRI because they can’t sit up? Cheers
  19. J

    Thoughts and experiences of having an FDG PET

    That’s an interesting list of symptoms. I’m very glad you are getting tests done. I got lucky last year and got some testing through an excellent NHS Consultant. The CT didn’t show anything (they were checking for lymphoma etc) except a part of my bowel which needs to be rechecked but is...
  20. J

    Thoughts and experiences of having an FDG PET

    Hi @tooth I haven’t actually made the decision yet because the ambulance service arrangements still haven’t been made. I can only lie flat and have to have a stretcher. But getting to an appointment like a scan is proving difficult. Waiting to hear back after their latest house assessment. So...
  21. J

    My ME is in remission

    This news provokes two very different emotions in me. The first is joy for @JenB After all you have done and are doing for people with ME it is wonderful to hear of good health news for such an amazing person! My recent hospital visits and such have directly felt the impact of your campaigning...
  22. J

    Thoughts and experiences of having an FDG PET

    I do need to ask more questions. I am most concerned about the glucose worsening the ME. Has anyone had an FDG PET with ME?
  23. J

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    Glad it’s helping people but it is way, way too big a dose for me. Sublingual might not be an effective form but even 10ug of hydroxy b12 makes me ill. When I was just housebound and not bedbound a piece of a methyl b12 sublingual tablet (about 150ug) made me bedbound for a days. I find it...
  24. J

    Thoughts and experiences of having an FDG PET

    It’s the NHS so the doctor wouldn’t profit (if financially is what you were saying). He’s a very good doctor which is what is making it so difficult. It is fishing so any action would depend on results. It’s a constant low fever, very rare that it measures normal. It does rise in the evening...
  25. J

    Thoughts and experiences of having an FDG PET

    My consultant wants me to have an FDG PET because I have been running a low grade fever for a year and it’s not sure why. I am very severe and I am worried about the irradiated glucose particularly worsening my mitochondria. My two ME doctors think the temperature is ME but my consultant...
  26. J

    My first visit to see Dr Klimas and team (Success in the End)

    Glad to hear you are seeing a specialist and really hope the treatments work for you. Can I ask why they want you to change from Elavil to Doxepin? Did they say?
  27. J

    Your experiences with grape seed extract.

    Thanks for the replies. I notice there is no first hand positive experience. Yet i’ve thought this was a popular and successful supplement. I am interested in the shift to TH1 as I have Candida and signs, maybe, of autoimmunity (just tested very positive for 7/11 on celltrend). Too ill to try...
  28. J

    My Lifeline

    I don’t have any advice or knowledge about the financial support over there but I will be thinking of you. Sounds like your husband needs a lesson in responsibilities and compassion. He shouldn’t treat anyone this way, least of all his wife. Never forget that it isn’t your fault you are ill...
  29. J

    Do you get a fever with your ME?

    Thyroid checked. It’s constant really and just varies in severity. It is so draining which is what bothers me. I don’t know how to bring it down and apart from not wanting to take paracetamol 24/7 I measured it’s effect and it brought it down by 0.1c.
  30. J

    Do you get a fever with your ME?

    This is something I have been meaning to ask for a while. I have had ME for nearly 15 years and always had the classic can’t raise a fever even when sick, lowish body temp. This year I was relapsing, then woke up, couldn’t walk, unhappy bowels and fever. The bowels settled but the fever...