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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. Dmitri

    Is anyone familiar with meds that block IL-6 Trans-signalling?

    I tried sarilumab injections for a period of about four months and unfortunately didn't get any benefit. On the final month of trialing it, I caught a severe intestinal infection which may or may not have been exacerbated by the immunosuppressive effects of IL-6 inhibition.
  2. Dmitri

    Anyone else with PANS/PANDAS?

    The antibiotic was isoniazid for TB, which I didn't have. It was misdiagnosed. I was 3 years old and the "treatment" that lasted weeks, I reacting badly to it and was never the same after it was discontinued. That's when most of my symptoms began and gradually even worsened despite avoidance of...
  3. Dmitri

    Remarkable relief from benzodiazepine

    Valium as a safer and more efficient alternative is the first priority, but I haven't even had a chance to ask about it because both benzos and IV delivery at home were written out of the question on any of the video calls after the last time she was at the hospital. If she does end up at the...
  4. Dmitri

    Remarkable relief from benzodiazepine

    Thanks for checking in. Unfortunately, she's been getting worse and worse. Barely tolerates food and water, has to use diapers in a laying position because she can't even sit up temporarily to use the commode now. Skin became a strange, dry texture, more weight loss. Hasn't been in the hospital...
  5. Dmitri

    POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)

    I have one, but was unaware of it being abnormal until earlier this year. I also have scoliosis and pectus excavatum, which are probably related. Spine MRI was reported as normal otherwise.
  6. Dmitri

    Remarkable relief from benzodiazepine

    Since becoming bedridden, no doctor of her own due to not being able to travel. Trying to get outpatient video appointments now since the pandemic opened that opportunity more widely. It really is much harder to go through all this without having a doctor write basic directions, like asking for...
  7. Dmitri

    Remarkable relief from benzodiazepine

    There is a video visit scheduled for a post-discharge appointment with a rheumatologist, probably not the same one. I couldn't get their name. Video visits are the only type of visit possible due to the bedridden status. She was offered to go by ambulette, but that requires sitting, which...
  8. Dmitri

    Remarkable relief from benzodiazepine

    She can't tolerate any liquid, and stopped drinking even filtered tap water. She drinks bottled water in small amounts. Tried experimenting with other liquids, juices, milk, etc. but they are all too reactive. It appears that the water here is treated with chlorine, not chloramine. Anything...
  9. Dmitri

    Remarkable relief from benzodiazepine

    Thanks for the link. I'll quote the paragraphs so the info is immediately available here: Here's a few others I found in the past: https://www.mastzellaktivierung.info/downloads/SIGHI_Medication_Manual_PREVIEW.pdf...
  10. Dmitri

    Remarkable relief from benzodiazepine

    Definitely, and each hospital trip raises my disgust at the medical system. There were a few times when she was discharged with a prescription for oral ativan pills, but she can't take them. And nobody appears to be willing to prescribe IV ativan at home. She hasn't been able to see any of her...
  11. Dmitri

    Remarkable relief from benzodiazepine

    For her, it appears to start with spasms, then swelling and redness (particularly in the lips), then bursting and releasing liquid that further dries and irritates the lips and starts the vicious cycle anew with more severity. Ativan stops this cycle and her lips heal for as long as she's on it...
  12. Dmitri

    Remarkable relief from benzodiazepine

    This is about my mother rather than myself. Her state has gotten very severe to the point where she's bedridden. Her diagnostic history includes POTS, Sjogren's, MCAD, CFS, fibro. She has disabling spasms in her GI tract, along with inflammation upon contact with food or water, which limits her...
  13. Dmitri

    3-month IVIG experience

    In retrospect, it was worth trying a very low speed to see how it would go. But according to most of the sources I consulted, reactions to the infusion rate only occur immediately and that the delayed reactions I experienced a day or three later was unrelated to the rate, but I suspect my very...
  14. Dmitri

    3-month IVIG experience

    Hi, sorry for the lack of updates. I stopped the infusions around May which meant I was on it for roughly 10 months. The side effects started to become worse toward the end, even after spacing the days apart, which worked at first but eventually I started feeling as sick from a single day of a 6...
  15. Dmitri

    3-month IVIG experience

    From what I understand, most of the nasty things begin hours or days after the infusion is over for most patients. My lack of immediate reactions during the infusion itself appeared to signal to the nurses that they can keep raising the infusion rate. After my reaction to the very first...
  16. Dmitri

    3-month IVIG experience

    The indication for it was Sjogren's and small fiber neuropathy, which is an off-label use. It took many months to get it covered. My rheumatologist had to send a written appeal with a supporting note from my neurologist. $10-15k is approximately how much it costs here per month as well. By US...
  17. Dmitri

    3-month IVIG experience

    I finally got IVIG infusions approved earlier this year and began receiving them monthly, starting in June - 3 days in a row, 48g per day for 2g per kilogram of bodyweight. Only pre-med is IV benadryl, refused tylenol since only oral form was available. The results? I can't tell for sure if...
  18. Dmitri

    High NK cells

    Just to further clarify, was it low function or low numbers that your test results showed? A follow-up test for NK function might provide something useful, with my marginal result on number. Is this one considered reliable...
  19. Dmitri

    High NK cells

    This was part of a blood panel taken last month. First time, to my knowledge, that I ever had NK cells tested. Both high and low counts are supposed to have an unclear association with autoimmune disease. Anyone else with high or low NK cells?
  20. Dmitri

    Am I the only one?

    Interesting, maybe it was the choline content in lecithin? It may have been helpful if some of the symptoms were related to not enough acetylcholine. I still haven't tried choline supplements, and there's the question of whether I need more or less of it in the first place.
  21. Dmitri

    How long does a skin punch biopsy for small fiber neuropathy take to return?

    @Gingergrrl Not yet, all I got so far was my first denial for IVIG. I hope it will eventually come through. Also hoping that the side effects won't be severe enough to stop it. I can't tolerate gabapentinoids and anti-depressants, the first line treatments for SFN.
  22. Dmitri

    How long does a skin punch biopsy for small fiber neuropathy take to return?

    My atypical autonomic symptoms were an example of this - periodic orthostatic hypertension rather than POTS, normal valsalva, etc. Worse than narrowly defined symptoms is unconditional faith in standard blood tests and using negative results to rule something out, even diseases where the...
  23. Dmitri

    How long does a skin punch biopsy for small fiber neuropathy take to return?

    The sensation can be just about anything - aching, throbbing, pins, temperature extremes or a total loss of sensation. Burning sensation is the the "textbook" symptom.
  24. Dmitri

    Tested positive on Early Sjogren's

    It was a neurologist, and the first good neurologist I saw after seeing about four others over the past few years. Sadly, as an MS specialist, there's not much further workup she can do. I need to find a decent neuromuscular specialist who takes my insurance. The rheumatologist was the one who...
  25. Dmitri

    Tested positive on Early Sjogren's

    I had the biopsy taken two weeks ago and found out about the results yesterday. It was a partial positive and interpreted as mild sialadenitis, but not significant enough for a Sjogren's diagnosis based on this sample. The rheumatologist was about to order a second biopsy but then settled on...
  26. Dmitri

    Songs repeating in head constantly

    I've had the "earworm" for a very long time and see it as another aspect of OCD. There's always a melody playing in my head and it's torturous. Oftentimes it's a melody that I enjoy at first, but it becomes an irritation after a whole day of it repeating in my head. I think low dose naltrexone...
  27. Dmitri

    Celltrend worth it if I don't have POTS or PEM?

    I had Mayo's PAVAL done as well as GAD65 and NMDA, they were all negative, but they were worth testing for and covered by insurance. Have you ever gotten this test? https://www.joincyrex.com/the-cyrex-system/array-5-multiple-autoimmune-reactivity-screen It's from a US-based lab but it's not as...
  28. Dmitri

    Celltrend worth it if I don't have POTS or PEM?

    For treatments, I had other biologics in mind. Rilonacept (IL-1 inhibitor) for Behcet's was covered and I started it last week, but I'm not seeing any effect so far. IVIG would probably have the best chances because it's so broad-acting, but it's not likely to get covered, at least not without a...
  29. Dmitri

    Celltrend worth it if I don't have POTS or PEM?

    Having more proven autoantibodies would increase the chances of insurance covering immunomodulatory treatment. Which chronic infections are being associated with CFS and becoming detectable, besides the herpesviruses?
  30. Dmitri

    Celltrend worth it if I don't have POTS or PEM?

    I've considered saving up for the Celltrend POTS-diagnostics panel because of the valuable information it may provide. I experience a lot of fatigue, but no PEM. I have many autonomic symptoms but no tachycardia, with positive testing for small fiber neuropathy being a possible explanation...