• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Nickster

    First try at Active Protocol and have questions.

    My son Nick takes both benadryl and tylenol before each IVIG and that helps to minimize any allergic issues. Also, drink lots of water because sometimes you can get a headache or flu like symptoms. Good luck!
  2. Nickster

    What labs to do before starting IVIG/Rituximab?

    Sorry to hear that. I hope the flaire passes soon. Take care.
  3. Nickster

    What labs to do before starting IVIG/Rituximab?

    He has done 7 rounds of IVIG and is approved for 11 more rounds. He did 1 round of rituximab and will do that each 6 months. How are you doing? I hope your well!
  4. Nickster

    What labs to do before starting IVIG/Rituximab?

    My son is doing better. He used to be in a dark room with all of the sensitivities and now each day he asks to go to the beach or get out with people. He still has a long road to recovery, but, he is greatly improved. Thank goodness! I hope that you are doing well!
  5. Nickster

    What labs to do before starting IVIG/Rituximab?

    We kept my son on an individual grandfather insurance plan and it has a wide network that it covers and approves most things requested by the doctors. The old plan is the way insurance was prior to the Affordable Care Act/ Obamacare. I know that insurance can be tricky, but, try to talk to a...
  6. Nickster

    What labs to do before starting IVIG/Rituximab?

    My son has greatly improved on both IVIG and rituximab. He has completed 7 monthly IVIGs (4 days of infusion done monthly) and 1 rituximab (2 doses 2 weeks apart by IV and to be done every 6 months in this order). His sensitivities to sound, light, smell, temperature and stimulation have gone...
  7. Nickster

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    @Jesse2233 You are an eloquent writer and made me feel I was there with you. I am happy that you are able to be a part of this process in solving this disease/syndrome. Also, to hear the depth of emotion seeing Whitney and his family. They all are truly caring and selfless people that are...
  8. Nickster

    Rituximab Phase III - Negative result

    Sorry I meant Sjogrens Syndrome. I was typing with my thumbs.
  9. Nickster

    Rituximab Phase III - Negative result

    My son Nick will be trying Ritixun next week for his autoimmune issue (Sjondrome Syndrome). He will have 2 iv doses 2 weeks apart and than every 6 months. Once this is done, they will try to ween him off the steroids (prednisone 20). The UCLA rheumolologists were very encouraging with the...
  10. Nickster

    New organ discovered and could indicate disease

    Below is an article about a newly found organ that is a large one (bigger than skin) and could test for disease: https://www.cnn.com/2018/03/27/health/new-organ-interstitium-study/index.html
  11. Nickster

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    My sons blood thinner is enoxaparin by injection.
  12. Nickster

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    My son was put on blood thinners. I wonder how this changes the shape of the blood. Does anyone else take blood thinners?
  13. Nickster

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Another thing with Nick is that his red blood cell count lowered and his liver started to make red blood cells instead of his bone marrow which is the natural way to get red blood cells. Ucla hospital did some further testing to find out why the liver kicked in to produce the red blood cells.
  14. Nickster

    OMFScienceWednesdays-red blood cell deformability in ME/CFS

    Interesting because my son had a nerve biopsy and pathology indicated a vasculitis of the small blood vessels. His red blood cell count has been very low due to other health issues and his me/cfs symptoms have improved. Also, when he was in the hospital they kept thinking he had a sepsis...
  15. Nickster

    In Memory of Bob: A tribute from his friends

    I did not know Bob, but, I know the disease and it is torturous. I am so saddened that he had to take these measures and there was no help for him by the medical community. We somehow need to change this. I hope you Rest In Peace. Sending love to the family.
  16. Nickster

    Major Crash - Please help me!

    The best thing for sensitivities is ivig at least for my son. Can you get a doc to prescribe it?
  17. Nickster

    Pineapple fund--donation to OMF increased to $5 million!

    WOW pineapple fund! You are about to change lives! This completely changes the way life can be for the very ill. Thank you!!!
  18. Nickster

    Janet Dafoe gives an update on Rons work

    When I talked to Janet Friday night, she said that many scientists stayed to talk to Ron and were in disbelief that this disease existed. It's nice to hear the medical community is listening. Thank you to Janet and Ron for their perseverance!
  19. Nickster

    Janet Dafoe gives an update on Rons work

    @Janet Dafoe (Rose49) Janet Dafoe gives an update on Rons work on twitter and OMF see below:
  20. Nickster

    $1,000,000 donation to OMF!!!!!

    This brought tears of joy to me! To see the outreach from others is truly joyful! Hopefully my son and all of the sufferers have a cure soon.
  21. Nickster

    Unrest on PBS

    Unrest was on PBS see below and can be watched: http://www.pbs.org/independentlens/films/unrest/ I am posting the movie as it is available on PBS website when you google it. If you click on the picture you can watch the movie Unrest. It stated that you can share it on Twitter and/or Facebook...
  22. Nickster

    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    This is so very sad. The suffering and torture from this disease is indescribable. I respect her wishes to end the suffering. I commend her for bringing this public and hope the medical community is listening. I know that I have heard you Anne.
  23. Nickster

    In Memory of Anne Örtegren

    This is so very sad. The suffering and torture from this disease is indescribable. I respect her wishes to end the suffering. I commend her for bringing this public and hope the medical community is listening. I know that I have heard you Anne.
  24. Nickster

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali I was researching hereditary amyloidosis and this feed came up. Do you have any information on this condition? Thanks
  25. Nickster

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

    I see your experience in the prior threads. What made you pursue the neurosurgeon? That seemed an area that you did not give up on.
  26. Nickster

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

    These are my sons issues. Can you tell me or pm me the neurosurgeon/neurologist you went thru? What is the name of the procedure your having? Currently Nick is seeing Dr Chheda which is Dr Kaufmans associate. Thank you for sharing your experience.
  27. Nickster

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

    @jeff_w Did you have digestive or neuropathy issues?
  28. Nickster

    Seeking information on long-term outcomes with Dr. Kaufman

    @ivorin My 26 year old son does not respond well to the mcas meds (ketotifen and chromolyn) and is unable to take them. One thing that I have noticed is that when he over exerts himself or reacts to drugs/foods, it sets him back. The only thing that seems to help is rest. Somehow he manages...
  29. Nickster

    Seeking information on long-term outcomes with Dr. Kaufman

    Have you tried ivig? If so, what was your outcome? The doc wants my son to do ivig.
  30. Nickster

    Seeking information on long-term outcomes with Dr. Kaufman

    @jeff_w I wish you much success with the surgery!