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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. O

    My wife was just awarded SSDI

    Just got the official letter from Social Security. She is on the 3 year review plan. Thanks for the heads up @caledonia I agree, our government has it's priorities completely out of whack. The fact that one has to hire an attorney to claim benefits they are clearly eligible for, from a system...
  2. O

    My wife was just awarded SSDI

    @geraldt52 I am so sorry to hear about your experience. Seven years is seven years too long. That's just ridiculous. Does Social Security take into account whether your spouse is receiving benefits as part of the decision? They shouldn't, by any ethical standards, but those were thrown out the...
  3. O

    My wife was just awarded SSDI

    Thank you all for your kind, truthful words and advice. My wife has been unable to perform the 'leg work' for her application, so I took it on with vigor. I truly believe that made a huge difference. I have been keeping track of her medical records by scanning them and storing electronically...
  4. O

    My wife was just awarded SSDI

    I am so thrilled to announce that my wife has just been awarded SSDI benefits after a year long process! She had severe CFS, along with several other comorbidities, and has been completely bed ridden for over a year. I want to send encouragement to all those out there who are either in the...
  5. O

    Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

    I am also keen on this idea of possible anti-endothelial or anti-neuronal antibodies and agree that ELISA may not be enough. My inner pathologist wonders why we couldn't study bound immunoglobulin in patient/controls in neuronal or vascular tissues, akin to how we diagnose anti-GBM in renal...
  6. O

    Finally! A good local doc and IVIG

    @SOC So glad to hear about your positive experience. Heme/onc docs have been some of my favorite colleagues to work with. I wouldn't worry about him reading up on ME and changing his mind. He's seen your counts, has your history, is already recommending IVIG and antibiotic when needed, and seems...
  7. O

    Low WBC and Ferritin Way Up!

    It's never simple, is it? The short answer is yes. Ferritin, along with being a helpful surrogate marker of iron status, is also an acute phase reactant. That is, it often can increase with acute/subacute infection. If your baseline ferritin is low, and you are clearing a concurrent infection...
  8. O

    ANA/EBV panel results help

    I think a decent rheumatologist would be a great thought as well. They'd likely have set laboratories they use for reliable and high quality testing, including IFA ANA, and they'd be familiar with how to interpret the results.
  9. O

    Chronic lower right abdominal pain?

    I am assuming you have been evaluated for Crohn's disease? The sort of fits of pain you describe reminded me of two things: Crohn's enteritis and appendicitis. I have Crohns and had a near ruptured appendicitis. The pain from both is similar, excruciating, and located in a very similar area...
  10. O

    ANA/EBV panel results help

    Hi there. The ANA result report is a bit confusing. The gold standard approach for ANA testing, I believe the method endorsed by American College of Rheumatology, is the older immunofluorescence assay (IFA). This should result in an ANA reported as a titer... 1:40, 1:80, etc.. Different labs...
  11. O

    Long-Lived Plasma Cells in Autoimmunity: Lessons from B-Cell Depleting Therapy

    @Jonathan Edwards Indeed, we have to some degree. That said, I always enjoy your posts and learn quite a bit from them. Thank you for that!
  12. O

    Long-Lived Plasma Cells in Autoimmunity: Lessons from B-Cell Depleting Therapy

    I saw the word plasma cell and it immediately got my attention! Plasma cells are notoriously difficult to target and treat, thus why treatments for multiple myeloma (plasma cell myeloma) are often times not successful. They are hardy little buggers, to put it bluntly. To toss in a little bit...
  13. O

    What does this test result mean?

    I don't know all the specifics of your clinical presentation, but your reasoning is sound in that the elevated GGT, in the context of normal Alk Phos, could be secondary to some other process disrupting hepatocyte function (some chemical, drug, fatty liver disease, etc). I am not sure if smoking...
  14. O

    What does this test result mean?

    Hi there and I appreciate your response. To my knowledge, GGT or gammaglutamyl transferase is an enzyme more specific to the liver (I.e. Canalicular and biliary system) than Alkaline Phosphatase. Alk Phos exists in multiple isoforms found in different organ systems. It is indeed lining the...
  15. O

    What does this test result mean?

    Thanks for tagging me and for providing follow up results. So glad to hear your liver enzymes are normal range! Also glad to hear you are getting evaluated by some seemingly saavy specialists. The GGT and Alkaline phosphatase would be worthwhile to check, along with anti-mitochondrial...
  16. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    You might consider also including something re: the economic burden, as citing the IOM report: "ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually. " Much of this could be attributed to lack of access...
  17. O

    Three years and no diagnosis. Frustrated

    Thank you, @Jammy88 for your kind words, encouragement and positive outlook. I do whatever I can, and use whatever knowledge I have gained, to help her. I also like to help folks here, if I can. At the very least I can throw in my two cents. This disease really pushes the boundaries of...
  18. O

    Three years and no diagnosis. Frustrated

    @Jammy88 Yes, I am a pathologist (MD). I specialize in blood and bone marrow disorders, though do mostly general surgical pathology and laboratory diagnostics. I became interested in this mysterious disease, known as ME/CFS, as my wife is one of the unfortunate 25% ( severe cases). This disease...
  19. O

    Three years and no diagnosis. Frustrated

    I agree with @Jammy88 that systemic mastocytosis would be worth investigating. It could match some of your symptoms, and is a disorder frequently overlooked. I have diagnosed a few cases on bone marrow biopsy, but serum tryptase levels are a good starting point. Further, there have been some...
  20. O

    "Central pathways causing fatigue in neuro-inflammatory and autoimmune illnesses" 2015

    If I may interject, and perhaps add even more confusion to the issue? Anecdotally, I have seen a number of patients with CLL/SLL (mature B-cell lymphoma/leukemia) treated, presumably solely, with rituxan, who have exhibited absolute T-cell reduction in addition to the anticipated B-cell...
  21. O

    What does this test result mean?

    I agree with @halcyon Did you also have anti-smooth muscle and anti-mitochondrial antibodies tested? Liver enzymes checked? (AST, ALT, GGT, Alk Phos). From my experience as a pathologist (I don't see patients), PBC can be associated with various connective tissue disorders, including...
  22. O

    CFS and dogs barking, the telephone, neighbor's loud music, ect........

    My wife, who has a very severe form of this illness, is quite sound sensitive. She constantly wears the highest dB reduction rated ear plugs, in addition to construction grade ear muffs, when it gets really bad. Some of the most annoying noises are pretty much any type of internal combustion...
  23. O

    Dr Chia finds Double-stranded RNA in stomach biopsies

    Well done, Dr. Chia! He told me about this study a while back and I am thrilled to see it in print! As a pathologist, I see mild chronic gastritis in stomach biopsies frequently. Some pathologists just blow it off as "normal". I have never felt comfort with that approach. I think he is really on...
  24. O

    Meaningless Rickettsia results?

    I'm with @Jonathan Edwards the reference range does not make sense with the patient result. The patient testing should be done in the same manner as the reference interval. I'd raise this issue to the lab, since you are paying for this test, and have them explain and/or repeat the test with...
  25. O

    I have some questions for anyone who has ever taken Valcyte...

    Hi there! Congratulations on your improvement. My wife hasn't tried valcyte yet, but she also is extremely sensitive to standard med dosages, so you definitely aren't alone in this. Any advice on a decent pill splitter to make 1/32 of a pill? I have a hard enough time cutting my wife's...
  26. O

    I want to become a doctor and help ME patients

    I thought I'd weigh in on this, as a current physician. GO FOR IT!! It is a long, grueling and expensive (at least here in US) process, but we desperately need more compassionate people taking the oath. You, having ME, put you and your future patients at an advantage, not a disadvantage, as you...
  27. O

    Dr. Chia current work?

    I am not sure, but he has not charged me. I am a physician, so perhaps its more of a 'curbside consult', nonetheless he has been incredibly generous with his time. That speaks volumes to me of his character as a human being and doctor. I suppose with the full fee and appointment you get all the...
  28. O

    Dr. Chia current work?

    KRR, I don't have the disease, but my wife has a very severe form of it (completely bed bound). Equilibrant has been the only medication, thus far, that my wife has shown improvement on. Start very slow and titrate up according to your symptoms. My wife started with 1/8 pill per day and now is...
  29. O

    Pets for chronic illness. Has anyone benefited from them?

    As a care-giver for my wife with severe CFS/ME, having my dog and cat as companions has been a life saver, for me. If you live with your care-giver, having a pet can be extraordinary helpful for them in handling this complicated, stressful disease. Further, your spouse can do all the dirty work...
  30. O

    Reality of my ME/CFS

    @kristysmiles Thank you for posting. You have come to the right place. We believe your symptoms are very real, no worries here. I do not have CFS/ME, but my wife does, and is very ill. She shares a number of the symptoms you describe, as do a bunch of other folks on this site. I wholeheartedly...