• Welcome to Phoenix Rising!

    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. merylg

    Whole genome done - now what?

    https://www.enlis.com/ and https://sequencing.com/tests/health I also purchased most of the panels Dante offered at reasonable cost. At times they had special offers.
  2. merylg

    ron davis ME & you & us and glucose?

    I have messed up glucose metabolism & raised fasting insulin. A 2 hr GTT with insulins put me in pre-Type 2 diabetic range. Also have ‘fatty liver’ & Mito Prof recommended low GI diet. My fasting glucose is OK. On HCG diet I could get fasting insulin back to normal. However I think to measure...
  3. merylg

    ron davis ME & you & us and glucose?

    https://ghr.nlm.nih.gov/condition/congenital-hyperinsulinism# https://www.omim.org/entry/616095 Interesting that a heterozygous change in SLC16A1 (for MCT1) has been associated with migraines. I do suffer from migraines. I’ve had partial success with prevention by taking Vit B2 Riboflavin.
  4. merylg

    ron davis ME & you & us and glucose?

    That’s great it works for you! Might not work if someone’s fat metabolism system is broken or protein metabolism system is broken... I guess one would soon find out! I had some success with HCG diet so I know I can get ‘fat metabolism’ to work better. However I could not manage the...
  5. merylg

    Chagas disease - ME link?!

    https://www.who.int/news-room/fact-sheets/detail/chagas-disease-(american-trypanosomiasis)
  6. merylg

    Is it safe to fly with Emf sensitivity and CFS?

    Mike Snyder addresses the issue of hypoxia on flights in this video around 12:10 mins in...
  7. merylg

    Dante Labs whole genoma testing Results

    Hi @Seven (formerly lnester7) did you request any panels from Dante Labs? I’ve just purchased a Neurology panel & a Metabolic panel. As you know I already have some other panels which were included in their original offer. Not sure what they would have included in your original purchase. How are...
  8. merylg

    Anyone else get recurrent herpes viruses that are not EBV?

    No dizziness or pain or headache. I think GP gave me antibiotic & Valtrex. I do get headaches quite a bit though now & sometimes nerve zaps from turning head but have arthritis in spine, bulging discs & facet joint arthrosis, a previous whiplash injury & have had Ross River Fever 2015. Did IV...
  9. merylg

    Anyone else get recurrent herpes viruses that are not EBV?

    I’ve had one episode of suspected Shingles above one eyebrow (only one small sore & tingling under the skin). My mother had a more severe outbreak also above one eyebrow. I remember the concern that it was so close to her eye. Recently another member of my family had Ramsay Hunt Syndrome Type...
  10. merylg

    Muscle Disease - early & later onset

    Really enjoyed watching this webinar where Dr Emily Oates talks about Titinopathy
  11. merylg

    Cellular mechanisms in ALS/motor neurone disease (Lou Gehrig's Disease)

    Radio interview with Prof Dominic Rowe on Motor Neurone Disease... I'm listening to 'Conversations' with the ABC listen app https://abclisten.page.link/bc7GPq9cstJPFqGX6
  12. merylg

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    The first talk was really interesting. Trying to process it in my foggy head! I came in part way through so missed the name of the speaker but he was talking about Mitochondrial function. ‘ATP synthesis by Complex V is less efficient in ME/CFS cells’
  13. merylg

    Log: MCAS with Primary Immunodeficiency

    Interesting thread! I’d just like to say regarding IVIG that I got to ‘give it a burl’ & I had similar reaction each time of stiff neck & seeming like raised pressure in my head. It only lasted a short time & I managed it just with antihistamine. I did not see any great benefit so I ceased...
  14. merylg

    Pain and systemic inflammation after eating meat - fish - protein

    ? Amine intolerance ? Mammalian Meat Allergy ? Lysinuric Protein Intolerance https://en.m.wikipedia.org/wiki/Lysinuric_protein_intolerance
  15. merylg

    Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)

    Just came across this link about MELAS http://discovery.ucl.ac.uk/135344/1/135344_MELAS%20Final%20Draf.pdf
  16. merylg

    Experiences with sleep apnea treatment amd ME/CFS

    I've just started trial of CPAP for mild sleep apnoea. Needed encouragement to get started. Almost gave up before trying but my GP talked me into it!
  17. merylg

    Using Quant. Proteomics to diagnose Mito Disease - Monash Uni

    http://www.monash.edu/discovery-institute/news-and-events/news/new-genetic-analysis-approach-could-improve-diagnosis-for-mitochondrial-disease
  18. merylg

    Ganglioside antibody test result

    As far as I know, yes. It's been awhile since I tested. My usual pattern is normal levels of IgG & IgM... slightly raised IgA. I'll probably repeat the Ganglioside Ab test in a few months time, out of interest. Also will ask my Integrative GP if can repeat Immunoglobulin levels. Neuro did not...
  19. merylg

    Ganglioside antibody test result

    I have throbbing & burning type pain in my cervical-thoracic spine. Progressing profound muscle weakness mainly in face, neck, arms but also generalised weakness & moderate to severe fatigue. Enthesitis & a lot of muscle pain. Fibromyalgia. Brain fog & cognitive issues. Not much in the way of...
  20. merylg

    Ganglioside antibody test result

    Ganglioside antibody GM-1 IgG.....Not Detected GM-1 IgM.....Not Detected GD-1b IgG....Not Detected GD-1b IgM....Not Detected GQ-1b IgG....Not Detected GQ-1b IgM..* Detected My recent result. Would appreciate help with interpreting this. Value any input or discussion. Thanks!
  21. merylg

    Janet Dafoe Joins Phoenix Rising Board of Directors

    This news made my day! Thank you @Janet Dafoe (Rose49)
  22. merylg

    What is going on my most annoying symptom!

    This is a massive topic & maybe needs it's own thread. You will find other similar threads already running. Yes there are tests but it is a specialised area. Use 'Search' facility on here OR go to FORUMS then Alternative, Co-existing or Missed Diagnoses
  23. merylg

    What is going on my most annoying symptom!

    Clinical opinion of Integrative GP (thinks EDS). Clinical opinion of General Surgeon (suggested ?Mixed Connective Tissue Disorder & ?Hidradenitis suppurativa). Opinion of a genetic counsellor based on family history & my symptoms (thinks EDS). Seeing a Clin Geneticist about this soon.
  24. merylg

    23andme useful?

    I found 23andMe very useful. Was grateful for the health reports they used to issue, in spite of the controversy. Most useful program for analysis of raw data was Analyze My Genes https://sourceforge.net/projects/analyzemygenes/ I then took some findings to a Clinical Geneticist with an...
  25. merylg

    What is going on my most annoying symptom!

    I have trouble breathing when standing, seated & supine. I have most trouble breathing on exertion. In past I have had numerous Spirometry tests & the Pulmonary Function Tests in the box, plus bicycle ride tests. All normal except for a Histamine Challenge Test which showed 'mild asthma'. I am...
  26. merylg

    What is going on my most annoying symptom!

    I talk to a few people with Collagen Myopathy, (Bethlem & Ullrich type) and some have EDS & Collagen Myopathy. They seem to need to use BiPAP. I've had a few sleep studies too including one at home. They say I snore but don't have sleep apnoea. I have weak connective tissue ?EDS and issues...
  27. merylg

    Could it be Behcet's Disease?

    @Kati no I haven't. Can be a long path to a diagnosis. There is such a thing as "incomplete Behcet's" plus it is still the subject of research especially Neurobehcet's. What seems more important is not the name but that the patient gets listened to & gets to try available treatments that apply...
  28. merylg

    Could it be Behcet's Disease?

    Interesting...
  29. merylg

    Doing a Whole Genome Sequencing (WGS)

    http://www.news-medical.net/news/20161208/Scientists-use-unified-analysis-approach-for-diagnosing-diseases-with-multiple-genetic-causes.aspx
  30. merylg

    History of smoking a possible co-factor of ME/CFS?

    Poll needs another question along the lines of "Were you heavily exposed to passive smoking due those around you smoking at home or in your workplace?" I would answer "Yes"