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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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blood volume

  1. M

    Should blood volume be considered when interpreting test results?

    This is very much a layman’s question. I’ve read that blood volumes in ME/CFS patients with POTS can be substantially lower than normal. I would like to know whether reduced blood volume directly reduces the effective “dose” of agents that are carried in the bloodstream, such as thyroid...
  2. Pyrrhus

    Orthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes

    I just read a good overview article covering all the basics of orthostatic intolerance: Common Syndromes of Orthostatic Intolerance (Stewart, 2013) https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3639459/pdf/peds.2012-2610.pdf (or https://dx.doi.org/10.1542/peds.2012-2610) This paper starts...
  3. Shanti1

    Infusion time for IV saline- does anyone know what the typical infusion time is for 1L saline for ME/CFS?

    I will be trying this today and am wondering if flow rate can impact how well it works since I am gathering that some of the benefit may be from baroreceptors in the blood vessels detecting extra pressure....
  4. frozenborderline

    A radical proposal or two for ME/CFS treatment. Based on similarities btwn this and sepsis/shock

    So I agree with david bell's work about low blood volume in ME/CFS and also how the disease resembles a less emergent, slower sepsis or septic/hyoovolemic shock with adaptations that make it barely livable. Not just low blood volume, there is often high Lactate especially after activity, and...
  5. waif

    Have to drink tons and tons of water or I'm dizzy

    Hi all, Im extremely thirsty all the time and I have to drink a LOT of water, frequent urination. At night I pee nonstop, never wet the bed or even come close. Just the need to go dramatically increases. I have h-eds. Is this a CFS sx? I feel like I have to drink water moving around or...
  6. Rebeccare

    Salt tabs: Favorite brands? Dosage?

    It turns out that, after a lifetime of trying to minimize salt, it's really hard to take in enough sodium just through my diet! It's too bad that I find V8 rather nauseating. My doctor suggested salt tabs. When I asked about brands and dosage he just shrugged and said: "Just take whatever...
  7. ChookityPop

    Anyone tried TRT (testosteron replacement therapy)?

    I have autonomic nervous system issues, blood pooling in the calfs, compression tights helps. Would love to try it because of the increased blood volume, hemoglobin a1c, redd blood cell count, energy and maybe it will make me more robust. Ive talked to someone that said it made their recovery...
  8. ChookityPop

    Anyone tried altitude tent, EPO, peptides etc to increase blood volume?

    Altitude tents like https://hypoxico.com/product/portable-altitude-tent/ https://hypoxico.com/product/deluxe-altitude-tent/ Would be super interesting to hear experiences from doing EPO, peptides, testosterone etc. Lots of fluids and salt is a good way to increase it. I know TB 500 increases...
  9. Murph

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Cardiopulmonary responses to exercise in an individual with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during long-term treatment with intravenous saline: A case study Article type: Research Article Authors: Davenport, Todd E.*; a; b | Ward, Michael...
  10. Jesse2233

    Poll: Do you have low vasopressin (ADH)? (Desmopressin / Blood volume / Symptom Reduction)

    Who has had their ADH (anti-diuretic hormone) levels checked and found them to be low? This has been discussed before but I’ve not seen a poll on it. A quick refresher... Antibodies to Arginine Vasopressin / ADH (AVPcAb) have been reported in post viral diabetes insipidus Low ADH has been...
  11. purrsian

    Is it hard to convince docs to give IV saline?

    I've got a GP appointment tomorrow and I'd like to ask about trying IV saline, even just once. I've been having GI problems so she told me to use osmolax, but I've started feeling pretty bad. Looked up how it works, which is by holding water in the intestines so it's excreted, making the stool...
  12. S

    Oral rehydration for low blood volume in orthostatic intolerance - tips?

    Dr Marvin Medows is doing a trial of IV saline vs WHO oral rehydration solution (ORS) in a clinical trial in PWME+OI. He says he has preliminary data that the oral solution may be better than the IV, but it's important that it's a glucose/sodium solution. I've tried electrolyte solutions without...
  13. L

    IV Fluids for OI--how to Rx?

    Hi all, An out-of-state practitioner has recommended IV fluids for dysautonomia and chronic dehydration but neither she nor my local care provider (who is on board) seem to know how to Rx it so that it can actually be dispensed to me. My labs show very low ADH and high Osmo, so the issue of...
  14. PatJ

    Ultima Replenisher Electrolyte Mix

    On another thread @Valentijn recently recommended a commercial electrolyte powder (instead of DIY) to help with OI. The "Electrolyte Stamina Power Pak" she recommended looked good but has too much Vitamin C for me, which leads to fatigue and a general blah feeling. Electromix has been popular...
  15. Gingergrrl

    Poll on the effects of IV saline on ME/CFS symptoms

    This is the first poll I have ever created (and I am technically challenged with these types of things) so am hoping that it worked! I have been posting a lot about IV saline in @jeff_w thread but decided it was time to create my own thread and let him have his back! I also wanted to do a poll...