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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. Gingergrrl

    Much worse following bone marrow biopsy

    Good luck with everything and I am glad that the tests & medications are in progress. I hope that you can get some quality time to rest.
  2. Gingergrrl

    Chronically high total IgM

    No worries and I'm so glad that I could help! I think that my IgM was in the upper 300's but never went into the 400's (if I recall correctly). I think it would definitely be worth it to see a hematologist (if you have the opportunity) to try to sort this all out. Best wishes and I hope that...
  3. Gingergrrl

    Much worse following bone marrow biopsy

    I'm so sorry to hear this @Andrew but I am glad that you got the results of your chest x-ray. Are you still taking the antibiotic & anti-inflammatory meds? Has your PCP recommended anything else (further testing or treatments)? I just took my dad to get a chest x-ray a couple days ago and we...
  4. Gingergrrl

    Chronically high total IgM

    @M Nosson I just went through my files & folders and had no idea the level of disarray that they are in! :eek: So I am not sure if this info will actually be helpful but will let you know what I found. My IgM kept going up into the 200's and then 300's until my doctor decided that we needed to...
  5. Gingergrrl

    Chronically high total IgM

    I'll go through my folders and hopefully be able to find the tests for MGUS that my former doctor had me do back in 2018. It is no trouble at all and I will let you know what I find. My IgG was never low and I got IVIG for autoimmunity (not for immune deficiency).
  6. Gingergrrl

    Seriously Anemic but Unable to Supplement....

    I don't remember the exact words but I think the MTHFR mutation that I had (from 23andMe) was called "compound heterozygous". I can find my report if it would be helpful and we put the data through a program called "Genetic Genie" (back in 2014 when I did the test). I had shown my report to a...
  7. Gingergrrl

    Much worse following bone marrow biopsy

    I forgot, did you have a chest x-ray or any kind of scan of your lungs?
  8. Gingergrrl

    Chronically high total IgM

    High dose IVIG & Rituximab. I don't think that my CD3 and CD8 were elevated (if I recall correctly)? I can go back through my folders to check which tests I had for MGUS if this would be helpful for you. When you said "free light chains" that sounds very familiar but I was tested for this...
  9. Gingergrrl

    Informal Survey re: IVIG

    @junkcrap50 I just looked a little further online and found a reference that might be helpful re: IVIG dosing: https://www.ncbi.nlm.nih.gov/books/NBK554446/figure/article-23729.image.f2/
  10. Gingergrrl

    Informal Survey re: IVIG

    I can't remember how my doctors calculated the exact formula back in 2016 but I know that it was based on my body weight (at that time). IVIG for autoimmunity is a much higher dose than when it is used in immune deficiency. My two doctors who I worked with for IVIG were an internist and an...
  11. Gingergrrl

    Chronically high total IgM

    I went through this several years ago and my IgM was elevated and kept increasing. My main doctor kept monitoring it and my IgM kept going up. He was concerned and had me do several panels (both blood & urine) to check for MGUS and cancer. Thankfully all of those tests were negative so he...
  12. Gingergrrl

    Getting easily startled

    I wanted to clarify that I did not have the IVIG b/c of the anti-GAD65 autoantibodies (which cause the GABA/ Glutamate imbalance). I had IVIG to treat LEMS which caused me severe muscle weakness that was weakening my lungs and also to treat my POTS & MCAS. The fact that it ended up also...
  13. Gingergrrl

    Saga of the semicentennial sick chick

    Is having Hashimoto's a risk for Afib?
  14. Gingergrrl

    Getting easily startled

    I don't know if my (prior) situation is relevant to this thread but I am happy to share more about. I had an insane startle reflex for several years to minor every day things like the doorbell, the phone ringing, or another person's voice/movement (if I did not see them enter the room and did...
  15. Gingergrrl

    Comment by 'Gingergrrl' in 'The tekevisit with infectious disease doc - Day 20 of COVID'

    How are you feeling today @vision blue?
  16. Gingergrrl

    Thank you, Judith Heumann

    I had not heard of Judith Heumann until I watched "Crip Camp" on Netflix last year and I have literally been in awe of her ever since! I was sad to learn that she just passed away and she was a true trailblazer & rock star! :star::star::star:
  17. Gingergrrl

    Comment by 'Gingergrrl' in 'Went into a store today - Day 19 of COVID'

    I think that is a great idea and you can ask the doctor which bloodwork (or other tests) he would recommend for your next in-person appt. I'm wondering if the Lymphocyte Subset Panel and/or IgG Subclasses could be useful to assess the status of your immune system functioning?
  18. Gingergrrl

    Possible Stiff Person Syndrome

    @ChookityPop I'm so sorry for the delayed reply and haven't been on PR in a few days. I just replied to your PM and please let me know if I missed anything that you asked. My understanding is that the Voltage Gated Calcium Channel (VGCC) autoantibodies that can be tested by a commercial lab...
  19. Gingergrrl

    Possible Stiff Person Syndrome

    I know you were asking @Belbyr but in case it is helpful, I was diagnosed with LEMS in 2016 due to testing positive on multiple tests for N-type Calcium Channel autoantibodies, plus abnormal EMG & Nerve conduction testing, plus my symptoms of muscle weakness that were affecting my body & lungs...
  20. Gingergrrl

    Comment by 'Gingergrrl' in 'Heart arythymia - Day 15 of COVID'

    This sounds like a good follow-up plan (12 lead EKG and echocardiogram) in the future when you are feeling less acutely ill from Covid. Do you mean "sinus tachycardia" or this is a different arrhythmia? When my entire illness first started in 2013, I was given a diagnosis of "Inappropriate...
  21. Gingergrrl

    I have more sense than a team of Neurologists

    This sounds like a good plan :thumbsup:. Although I am sorry that you are having to deal with more nonsense :mad:
  22. Gingergrrl

    Dr David Tuller: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

    Absolutely phenomenal news @Countrygirl and thank you for sharing it. I am so happy for Alice and her family and best news of the day! :star:
  23. Gingergrrl

    In memory of Jim Ellsworth, aka jimells

    Thank you @MeSci for sharing that info (although I am sorry to learn of how much Jim was mistreated and suffered with cancer in addition to everything else that he went through :()
  24. Gingergrrl

    Comment by 'Gingergrrl' in 'Heart arythymia - Day 15 of COVID'

    Would the doctor be conducting tests tomorrow that can only be done in person or just talking to you to gather info? If it’s just talking, can you switch it to a phone or Zoom appt (vs. canceling it)?
  25. Gingergrrl

    Comment by 'Gingergrrl' in 'Heart arythymia - Day 15 of COVID'

    Is it a phone appt tomorrow or in person?
  26. Gingergrrl

    Dr David Tuller: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

    Thank God and this is great news. But it is sickening and vile that the hospital only "agreed to feed Alice" b/c they were exposed to the public and basically had no choice.
  27. Gingergrrl

    The TImes 27th Feb 2023: Families fear ME patients will die in hospital care

    Can the Epilepsy Foundation get involved in her case? I assume that her doctors can all agree that epilepsy is a real medical disorder even if they do not acknowledge ME/CFS or EDS? (I apologize for the sarcasm and it is out of frustration :mad:). Why won't they continue to prescribe the...
  28. Gingergrrl

    In memory of Jim Ellsworth, aka jimells

    @MeSci Thank you for letting us know and I remember @jimells. He was a great advocate and always had an interesting perspective to share. I remembering chatting with him here on PR from 2014 to 2017 and then I think he stopped posting? I believe that he is at peace now and may his memory be a...
  29. Gingergrrl

    Much worse following bone marrow biopsy

    I hope you are feeling better today @Andrew and let us know how you are doing when you can.
  30. Gingergrrl

    Federal Schedule A for job

    I apologize that I am not familiar with applying for Schedule A jobs and not sure that I can add anything that would be helpful. I Googled it and found a sample letter (for physicians or vocational rehab counselors) and copied the link below in case it is useful...