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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. glenp

    Check out our newest forum.

    Great thread Its nice to see this thread. I am trying to eat mostly whole unprocessed food. I buy sugar and snap peas. Recently I was at kims market where I bought them, because of OI I did not read the label. I always wash them. While eating them my mouth was burning somewhat more then...
  2. glenp

    Anyone else have severe facial pain as a symptom?

    I have the symptoms off and on, not so much now. I used to have the lupus type rash most of the time - was diagnosed as rosacea by a dermatologist, although I do not think that is what it is. A friend with similar symoptoms was diagnosed with lupus several years ago but now with a new doctor...
  3. glenp

    Chronic Lymphocytopenia

    low lymphocytes My lymphocytes are always low normal or below normal
  4. glenp

    Who's the best doctor for Dysautonomia, OI, etc.? Need protocols for tilt, etc.

    Dr Rowe From what I have read I like Dr. Rowe. He has a good webinaire that you can watch. I use him as a reference point with my GP. As per Dr. Rowe's information I use dextroamphetamine which helps me quite a bit. I also wear travel socks. Cort had Dr Rowe's webinaire posted - you can...
  5. glenp

    Fraser Health Board Meeting

    You can view webcast of Board of Directors Meeting. Questions will be received during the broadcast Thursday November 10 2:00 - 4:00 Board meeting 4:00 - 5:00 Question and answer http://www.fraserhealth.ca/events_calendar/event_calendar_details?eventId=322
  6. glenp

    ANY IDEAS ? How to stop vertigo, nausea and feeling unsteady

    am I noticed that you mentioned going out in the am. I am rarely up to going out until 3 hours after waking. When I first wake up I take a vaso drug and stay in bed laying and sitting for an hour. If I dont do that I can get up and faint, and I am sick for the rest of the day. If I follow...
  7. glenp

    Acetyl-l-carnitine

    I was in contact with Health Canada who informed me that I am allowed to bring acety-l-carnitine back with me, when driving across the border. I am allowed a 3 month supply and have to show proof that I am under a physicians care. I went across and got a few bottles although I did not mention...
  8. glenp

    Sleep Studies

    http://ca.news.yahoo.com/hundreds-b-c-sleep-studies-reviewed-180210423.html
  9. glenp

    Contacts

    PHSA - Teresa Kennedy 604-675-7401
  10. glenp

    Transient improvement from antibiotics - help be troubleshoot

    Minocycline Is anyone pulsing minocycline????? glen
  11. glenp

    Really? Is this who we are?

    Please everyone at this time we need each other more then ever. We do not want to see any more deaths over this new news. We need to stand tall and please be aware of others who may not be coping well. We will move ahead glen
  12. glenp

    I found something that makes me feel significantly more energetic and happier

    Very interesting I am glad that it is helping you. Do you know if it would be a vaso restrictor or dilator? It is so hard to find the pure form of many things that may help us. glen
  13. glenp

    Asprin Therapy

    This is a good reminder for me to start again. I usually take a baby aspirin daily hoping that it acts as a preventive, when I seem to bleed longer after a nic then I stop taking it for awhile. No apparent strokesfor me so far - pushing 61 glen
  14. glenp

    BC Canada lymie patients need your help please

    Please sign the petition here for lymie patients in BC Canada. If you do not live in BC Canada please just sign and make a comment that you are supporting friends in BC Canada http://www.gopetition.com/petitions/implement-recommendations-outlined-in-schmidt-report-20.html Plese comment...
  15. glenp

    Please sign the petition here for lymie patients in BC

    http://www.gopetition.com/petitions/implement-recommendations-outlined-in-schmidt-report-20.html
  16. glenp

    Coffee reduces depression risk

    http://www.consumergenetics.com/DNA-Tests/Caffeine-Metabolism-Test.php Can now get tested to see how caffeine affects you
  17. glenp

    Please vote for IiME as cause of the month

    Please everyone vote - we all need to stick together and help with money raising wherever we can. I know some think "its not my country" but, in the end it is going to help us all. We need some help for the next generation and its up to us to do it. If we can get it by charity voting, lets...
  18. glenp

    IACFS: Dr. Byron's Hyde booklet on ME

    I think that it would depend on your doctor. My doctor admits he does not know much about this illness and appreciates any information that I give him. I would think that a physician not open to Dr. Hyde's suggestions would be one to stop seeing. glen
  19. glenp

    The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

    Thank you to those reporting from Ottawa, wish I was there. Thank you Dolphin for posting the twitter link, I just joined and am now following Cort there. glen
  20. glenp

    Anti-anxiety meds suggestions.

    Buspar I liked buspar when I took it. I think that it has to be taken on a regular basis and takes about 3 weeks before it starts to help. I had no trouble coming off of it. I don't think many physicians prescribe it unless you specifically ask for it. It is not a benzo. It does not work...
  21. glenp

    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    Thank you for posting that good poor mans test xchocoholic. Some people have a delayed reaction so sometimes that needs to be considered too. As an example Sometimes I am ok when I first get up in the am (I always go back to bed) but if I have to get up again within 20 minutes it can be...
  22. glenp

    Please vote for IiME as cause of the month

    I am in Canada and I joined and voted. I had a bit of trouble with it - have to register first and then close and then go back to vote. When picking the cause there is an alphabetical list so go to the "I's" and then can type in Invest in ME If I can do It, people in the USA probably...
  23. glenp

    root canal problems

    Dental infections were a big problem for me for many years. I had root canals done over by root canal specialists. I gave up a few years ago and had the affected teeth out (against advice of the dentist) This is an older site but can google cavitattions and get updated info...
  24. glenp

    Anyone else improve at certain times?

    Mine has been linked to cortisol, although I have only had the regular cortisol tests here glen
  25. glenp

    Have your say in budget consultation - deadline Oct 14

    http://www.leg.bc.ca/budgetconsultations/
  26. glenp

    UBC - Interesting research - spinal cord stem cell

    http://www.sciencedaily.com/releases/2011/09/110915163533.htm New Type of Spinal Cord Stem Cell Discovered: Research Provides New Target for Regenerating Parts of the Central Nervous System ScienceDaily (Sep. 15, 2011) — A group led by a University of British Columbia and Vancouver...
  27. glenp

    Vitamin D raises gene expression of cystathionine beta synthase

    Vancouver There is a Vitamin D and Breast Cancer Symposium on Sept. 29th which I posted in the Western Canada group but thought I would add it here too http://vchri.ca/i/pdf/Event_VDBCS_29Sept2011.pdf glen
  28. glenp

    Vote for the Hunter Hopkins Center (Dr Lapp) to Win Intuit Grant

    I voted - hope it went through glen
  29. glenp

    Vancouver Symposium

    There will be a Vitamin D and Breast Cancer Symposium in Vancouver on Thursday September 9. I am posting this as I know many are interested in Vitamin D and CFS/ME FM and perhaps there would be information helpful to us also. http://vchri.ca/i/pdf/Event_VDBCS_29Sept2011.pdf
  30. glenp

    The Importance of Renter's Insurance

    What insurance company is it? Its good to know which company came through so willingly as many try hard to get out of paying claims. glen