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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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Search results

  1. K

    Seeking Recommendations for Vasodilators Effective in Treating ME/CFS

    Some of the PDE4 inhibitors can cause delayed gastric emptying so ibudilast is one to be careful of if you have chronic GI symptoms. Tadalafil (Cialis) has effect on peripheral and microcirculation and a number of studies find it to be effective for pain in a number of different chronic pain...
  2. K

    Is this an adrenal problem?

    A possible differential diagnosis could be renal Nutcracker Syndrome if you have other symptoms to match it. Not that there is any set sympton mix for it (they can be far more extensive than the medical literature suggests) but it can be a cause of blood pooling in the lower extremities...
  3. K

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Yes, I've seen a lot of accounts of doing just a stellate ganglion block. The point of difference in the above study though and what I haven't come across before was doing nerve blocks in multiple points at the one time. Have you tried any form of 'whole body vibration therapy'? There's a body...
  4. K

    HRV, Autonomic Nervous System, Etc

    Sorry, all I know about it is that my hubby gets occasional tachcardia attacks for no obvious reason and can generally get them to settle doing the valsalva maneuver the old fashioned way. We didn't know about the syringe method, just come across that this morning doing a quick search to see if...
  5. K

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Nerve blocks from injecting various local anaesthetics into different nerve bundles or plexuses in the body work in part via the suppression of SNS hyperactivity. This is an interesting article about a long covid patient suggesting his recovery in large part was due to doing nerve blocks at...
  6. K

    HRV, Autonomic Nervous System, Etc

    Have you tried just doing the valsalva maneuver to reduce your heart rate? Safest to do this with the 'syringe technique', and best while reclining or laying down. https://www.cochrane.org/CD009502/VASC_the-effectiveness-of-the-valsalva-manoeuvre-for-stopping-an-abnormal-heart-rhythm...
  7. K

    J tube

    Pressure necrosis of the abdominal wall can be a possible complication of tube feeding but that is more the case with tubes that have internal and external bumpers as retention devices which can lead to developing a 'buried bumper', something that can also be a cause of significant pain from...
  8. K

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    I'm well screened for tumours having had a lung cancer diagnosis at one point and surgery for that. Pelvic compression syndrome goes with NC in about 80% of cases (in women at least) so that's something else I have too in having a 'massively dilated left ovarian vein'. I'm not offered any help...
  9. K

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    Yes, I'm diagnosed with Nutcracker Syndrome. Also chronic mesenteric ischemia but none of the tests I've had done can pinpoint any other reason for the intestinal ischemia. An issue of transient SMA Syndrome may also be part of my picture but the 'upright' component of a barium swallow test has...
  10. K

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    A somewhat similar type of gut barrier dysfunction can be caused by the likes of methamphetamine or cocaine, by inducing GI tract vasoconstriction a.k.a. chronic intestinal ischemia. https://www.frontiersin.org/articles/10.3389/fmed.2022.783121/full Several of the abdominal vascular compression...
  11. K

    Thoracic outlet syndrome/TOS, a subgroup in ME/CFS? 2020 paper

    Yes, both (or eithe)r significant lumbar lordosis or lumbar scoliosis (the latter depending on which side the spinal misalignment curves to) can be factors in Nutcracker Syndrome for some, and I do know of a few people who have had significant improvement in their symptoms (of Nutcracker...
  12. K

    Thoracic outlet syndrome/TOS, a subgroup in ME/CFS? 2020 paper

    I would urge anyone with TOS to also be assessed for the abdominal vascular compression syndromes of renal Nutcracker Syndrome and May-Thurner Syndrome as TOS is a condition that also crops up a fair bit in this patient cohort too, and where headaches can also be a common symptom for some...
  13. K

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    PND is due to the heart not properly clearing the interstitial fluid within it when laying down. Just sitting up is usually enough to clear it if the cardiac issue isn't a too significant one.
  14. K

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Here is the article in question. It's about a woman who had renal Nutcracker Syndrome (NCS - left renal vein compression), something I'm afflicted with and which is fairly prevalent in those who also have EDS, and the condition is sometimes wrongly diagnosed as ME/CFS due to the significant...
  15. K

    Help with Autonomic Function Testing

    I'm in some facebook groups for gastroparesis and a small percent of new members in these have said their GI issues have only kicked off after getting COVID-19 so post-viral gastroparesis, but it's possible that it could be a microclotting issue affecting GI tract blood flow at the microvascular...
  16. K

    Butyrate - brand, formulation, dosage suggestions?

    Check out the threads on Miyarisan and clostridium butyrate; https://forums.phoenixrising.me/threads/clostridium-butyricum-a-game-changer.37324/
  17. K

    Interstitial Cystitis and ME/CFS

    I see it crop up now and again (in the USA) that the combination meds for UTI's hyoscyamine, methenamine, methylene blue, phenyl salicylate, and sodium phosphate are effective for some with IC as well...
  18. K

    Anyone got a good constipation remedy?

    Sorry for a slow reply, haven't checked in to PR for a couple of weeks. Not sure what's happened with Dr Levitt's product but he's still practising as a colorectal surgeon as far as I can ascertain. From memory, I think his dose equated to 15 gm of mag sulfate but I'm not entirely sure. I see...
  19. K

    Nicotine?

    Nicotinic acetylcholine receptor function can become impaired by antibody binding resulting in various degrees of severity of neuromuscular dysfunction, perhaps it's a possibility that nicotine helps from the aspect of stimulating these receptors...
  20. K

    Gravity , IBS and chronic fatigue.

    EDS combined with gravity can also be the cause of the abdominal vascular syndromes where GI symptoms can range from nondescript to totally debilitating, and not unusual for symptoms to be misdiagnosed as 'just IBS' initially; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510320/
  21. K

    Hypoglycemia symptoms without actual hypoglycemia (could it be a hypokalemia issue instead)?

    Alterations to some of the hormones involved in digestion and GI motility, and/or the diversion of blood flow away from other organs to the stomach following eating can also be a cause of a 'food coma' which may also come with having hypoglycemia-like symptoms...
  22. K

    L-theanine improves intestinal barrier functions by increasing tight junction, Xiaoling Chen, Jan 2023

    Not for this long weaned old sow. L-Theanine, and green tea for that matter stir up my gut (gastroparesis) symptoms to make me crook as a dog :vomit:
  23. K

    4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency

    A bit more information, and suggesting a high folate diet and methylated b vitamins show observational benefits. https://fasciainstitute.org/folate-deficient-hypermobility-syndrome/...
  24. K

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    It's relatively common for antidepressants (AD) of different types to be tried in gastroparesis patients at low dose when other meds have little effect on GI symptoms. Response to them among gastroparesis patients is a very individual thing though and I tried about 10 different variants before...
  25. K

    Resistant Blood Pressure

    https://ibcces.org/learning/what-to-know-about-elevated-blood-pressure-after-eating/ Postprandial increase in BP is a novel risk marker for arteriosclerosis in some cases. Lower left abdominal pain can sometimes be due to having chronic mesenteric ischemia so might be worth getting your bowel...
  26. K

    Resistant Blood Pressure

    Consider haemochromatosis as a possible cause of resistant blood pressure if your iron levels are high in the 'normal range' or elevated.
  27. K

    Hypoglycemia symptoms without actual hypoglycemia (could it be a hypokalemia issue instead)?

    It's a possibility at least. I've not joined the dots to put it together before but from your post here linking the 2 things together, I know of a lot of people with gastroparesis (idiopathic, so non-diabetic) who get reactive hypoglycemia-like attacks from eating for no apparent reason, and a...
  28. K

    Hypoglycemia symptoms without actual hypoglycemia (could it be a hypokalemia issue instead)?

    Adrenaline release and excess insulin during hypoglycemia stimulate the uptake of potassium from the bloodstream, causing low plasma potassium; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769974/ A Physiological Model of the Effect of Hypoglycemia on Plasma Potassium (2009)
  29. K

    Food and supplement safety recalls thread

    It's not a recall as such but this is an interesting assessment of the danger some probiotics can pose to some people in at risk populations. https://www.longdom.org/open-access/impact-of-probiotics-on-gut-microbiome-bifidobacterium-relative-abundance-first-do-no-harm.pdf
  30. K

    Update in the understanding of New Daily Persistent Headache, 2023

    Left renal vein compression whether it causes symptoms (renal Nutcracker Syndrome) or not (Nutcracker Phenomenon) can be another little known of cause of sudden onset persisting headaches in some cases too, and interestingly, those with EDS are a fairly prevalent cohort among those with renal...