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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. N

    How much is your Mean Platelet Volume? MPV correlates with hypoxia

    My lab ranges are (7.5-12.5) - I have a Sept 2020 reading of 12.1 and May 2021 of 11.8. All technically in range but toward top end.(I do not have PDW measurements).
  2. N

    DNA binding to TLR9 expressed by red blood cells promotes innate immune activation and anemia

    TSAT% typically in mid 30's and ferritin usually in mid to high 80's so should not be a limiting step. I had low copper a while back but even with that corrected no significant changes!
  3. N

    DNA binding to TLR9 expressed by red blood cells promotes innate immune activation and anemia

    Interesting I have always had low RBC (typically 3.6 to 3.8) so just below range for a woman. Docs say not worth follow up. But I am always interested in mechanisms of low grade RBC take down.
  4. N

    Have you had a clot or labs that show a hypercoagulative state?

    Sadly I wasn't. Thanks for your interest!
  5. N

    Have you had a clot or labs that show a hypercoagulative state?

    My IGM and IGA were negative. MD said IGG not over 40 so not going to cause a clot so best forget about it.
  6. N

    Have you had a clot or labs that show a hypercoagulative state?

    ESR - multiple tests 0 to 3 even when young and well. A few years ago tested twice for anticardiolipin antibodies IGG - 26 and 28 respectively. Not over 40 so no anticoagulation.
  7. N

    Licorice root?

    Licorice is definitely part of my regimen and I can tolerate this with normal BP and high fruit/veg diet for potassium needs.A few years ago I tested low in aldosterone. Gives me energy and brain boost.
  8. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    My EMG came back negative too BTW... Slightly improved this by upping magnesium even more - 700 mg a day. (My RBC still poor at 4.4). Maybe some antibodies acting on muscle? My creatine kinase and lactate dehydrogenase are low too.
  9. N

    Organic Acid Test (OAT) results – do we ALL show the Warburg effect?

    Back in 2017 - similar results but I was making a lot of energy from ketones 3-Hydroxybutyric above range (paleo diet). I have changed diet since then .. so probably need to get another test done soon.
  10. N

    Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Sectional Study

    Anyone else checked their CK levels. Just did mine: Total creatine kinase 32 U/L (29-143)!
  11. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    Wow - looks really interesting, but rather beyond my IT skills at present! I think it needs BAM file to work and I need to request that from GENOS first.
  12. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    Only late cataracts here in my family. On a high deductible plan here in US, so still debating whether to test as I would need to pay a few thousand dollars!
  13. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    Sorry, that the quest goes on. But, did they agree to the genetic blood test for DM2 to absolutely rule that out? As you know, my trapezius percussion myotonia also looks like yours. Maybe, this is related to a channelopathy. In my case, no channelopathy SNPs stand out on GENOS, so perhaps...
  14. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    Couldn't access full test but useful link to dysautonomia and peripheral neuropathy. Dysautonomia as Onset Symptom of Myotonic Dystrophy Type 2 Rossi S.a · Romano A.a · Modoni A.a · Perna F.b · Rizzo V.c · Santoro M.d · Monforte M.a · Pieroni M.b,f · Luigetti M.a · Pomponi M.G.e · Silvestri...
  15. N

    2 of 63 patients with muscle pain/fibro had Myotonic Dystrophy type 2

    Have you seen this on thiamine - though only tested in DM1 might still be useful. Neural Regen Res. 2016 Sep; 11(9): 1487–1491. doi: 10.4103/1673-5374.191225 PMCID: PMC5090854 PMID: 27857755 Can long-term thiamine treatment improve the clinical outcomes of myotonic dystrophy type 1? Antonio...
  16. N

    Weird ridges on fingertips, anyone else?

    Same here!
  17. N

    NOD2: A Common pathway that may be disrupted in ME/CFS

    Bowel issues before any health issues For rs2067085 I am C/G As above poster - My 23andme reported variants are predominantly common, even the "rarest" are well within SNP range: rs5743289 C / T (frequency T <17%) rs2076756 A / G (frequency G <25%) rs17221417 C / G (frequency G 11-29%)...
  18. N

    New Liquid Delivery System for Thyroid Hormone (T4) - Tirosint SOL

    I also loved regular Tirosint but ended up paying 140 dollars a month just for that. So no longer an option. I like the idea of liquid since the gel capsules cannot be cut if you are between doses. A good option for those with good insurance.
  19. N

    NEW: MAIT Immune Cell Findings Unite U.S. and U.K. ME/CFS Researchers

    Interesting to see L acidophilus in such company - it was one of my crash triggers!
  20. N

    Progesterone the hate story

    I do not tolerate progesterone (post menopausal). My issues are greater joint laxity as well as sleepiness, weight gain. I am careful to use non soy based cream that had caused an issue perimenopause. I think this progesterone intolerance is a clue for a subset.
  21. N

    OMF-funded RBC Deformability Paper Published!

    This is serious for me - my breakfast is half a bar of 85%! Hard to function without it. Now I can feel less guilty about it!
  22. N

    Severe progressing brain symptoms - Lyme Disease?

    I am in USA and my MD suggested test. I had bullseye rash a decade ago, so we were more interested in what was hanging around in my body rather than titers. I am not sure DNA Connexions serves Europe - you could email them through their website. Since this is urine test (PCR), there needs to be...
  23. N

    Severe progressing brain symptoms - Lyme Disease?

    One thing to rule out is the co-infection Babesia. I used to wake up overheated (I lost my ability to sweat for a while) and then I awoke with night sweats. Rapid heart rate at night also. These would persist for 30 minutes or so. You can search for my recent post on this. Only thing to note...
  24. N

    Babesia Divergens: Red Cells deformability and vascular adhesion

    Despite improvements with mold detoxification (Cholestyramine) and root canal/ cavitation removal, I still have periods when I slide backwards or get PEM from overexertion. The threshold is higher but still there Back in 2009, I developed a typical lyme rash, but was told lyme is not in my...
  25. N

    T1AM decreases thyroid production without effect on HPT

    Not sure where I stumbled across it, but it was a find. I love doctors who think outside the box. I am on 75mcg Tirosint. I will do some blood work in a month or two. I really don't want to suppress TSH totally (but that would probably be down to NDT). That was another Blanchard takeaway for...
  26. N

    T1AM decreases thyroid production without effect on HPT

    I am intolerant to most medications. I cannot remember the brand of T4 I tried but I came out with a lot of skin rashes - possibly a reaction to the filler. Then I tried compounded T4/T3 - possibly as a slow release compounded formulation. This simply did not get into my system. I felt severely...
  27. N

    T1AM decreases thyroid production without effect on HPT

    When I was first diagnosed with hypothyroid my savvy MD had me do a mixture of T4 and NDT (but still too much I think). For T4 only Tirosint worked. Just because I wanted to save money 3 years ago, I ditched the Tirosint (under my poor plan it is pretty expensive). I did equivalent in NDT. T3...
  28. N

    Did your ME/CFS start after mononucleosis? What were your Epstein-Barr virus lab test results?

    My blood test report shows them separately. But possibly - I am no expert. For DQB1 report shows Allele 1 as 03 and allele 2 as 06. All the results from Labcorp test can be put into mold risk calculator such as this:http://www.myhousemakesmesick.com/hlacalc/ which helped me get the 4-3-53 etc.
  29. N

    Did your ME/CFS start after mononucleosis? What were your Epstein-Barr virus lab test results?

    - Pathogen causing your CFS: EBV, Chlym. pneumonia, mycoplasma, HSV1 but not tested for all culprits. Surprised with viral component as 1st time down I was floxed (flouroquiolones) and thyroid affected. Second time mold. But, they reckon an underlying viral component now. Better with mold...
  30. N

    MARCONS testing - Negative but pseudomonas oryzihabitans

    No I have not tried neti POT recently. Tried over a decade ago and I couldn't get the hang of it!