• 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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Search results

  1. J

    Marijuana not so good for me

    As others have said strains make a huge difference, generally indica's are relaxing and sativa's stimulating. Out of the 100's of varieties out there I found only a few helpful with symptoms like sleep, pain and breaking the tired but wired cycle. The wrong strain and it can make these symptoms...
  2. J

    Help share our petition: Open Letter to Canadian Health Minister re Epidemic of ME

    Thanks for all your hard work @ScottTriGuy Looking forward to the news tonight.
  3. J

    uBiome results

    Mine were at zero Bifidobacterium compared to Selected Samples: 0x Lactobacillus compared to Selected Samples: 0x But everything else was out of the ordinary also Firmicutes: 96.60% Actinobacteria: 2.23% Proteobacteria: 0.93% Bacteroidetes: 0.23% With all those Firmicutes...
  4. J

    Presentation from one of the Vancouver clinic doctor

    Thinking further and to add to my previous comment regarding harms and cost to patients health. I knew another severe patient whom attended the clinic. She wasn't helped despite her efforts. She felt misunderstood and her condition not recognized as serious. It was very stressful and combative...
  5. J

    Presentation from one of the Vancouver clinic doctor

    Its the only program available and no other publicly funded choice. I'd like you to consider this in terms of the severely affected or people in more desperate situations. Having to attend the welcome group needlessly cost my friend a day off work, gas, tolls, parking but more importantly left...
  6. J

    Presentation from one of the Vancouver clinic doctor

    I had the same experience with the nutritionist. She was straight forward and did everything within her skillset and was realistic about it what that was. I have no complaints about her at all but would have been more useful at the beginning of the illness, not 5 years in. She didn't have...
  7. J

    Homemade Probiotics

    I've never made a large batch but have made smaller ones in mason jars. Its easy once you have the right amount of salt. The batches vary. I didn't feel good from cabbage but do well on the fermented carrots or broccoli. Plus they are less work to prepare than the cabbage. Along with the...
  8. J

    May/June magic... how does it work?

    I get the 6 week or so improvement in May/June. The pattern has been more or less the same since becoming ill. The winter is by far the worst and seems to start in middle of Dec each year. The last 4 years right on the 15th to the day. This year it did start with the closing of the windows for...
  9. J

    Could my Methyl B vitamins have caused my symptoms?

    I am not sure if your still on the paleo diet. If so that could be some of your issue. The symptoms you described here I get as a result of the paleo diet alone. For me I made no connection to vitamins as it was one of my earliest symptoms when getting ME. I hadn't started any supplementing...
  10. J

    Im convinced I have extremely high Glutamate levels, life is hell.

    @jack blogs I know the hell and torture both you and @Hip describe. Its hard to put a name to it and don't think it quite fits anxiety. I went through 8 or so months of it 24/7 straight. Intense for about 18 hours a day. Only slept 2-3 hours per day. SSRI made it worse and benzo's did...
  11. J

    Presentation from one of the Vancouver clinic doctor

    @panckage My initial experience and impression was the same as yours including the evasive answers as to what the program is and the 'overbooked' type remarks. I'll be discharged soon and its still not clear what the program is...:thumbdown: As you said lip service. Smoke and mirrors come to...
  12. J

    Weight loss and weight gain poll

    I was about 170lbs at the beginning of the illness and just over a year later I was down to 90lbs my lowest. Stayed in the 90's for around 4 years and just recently gained 10lbs for no real reason. Its seems to be fat on the belly though
  13. J

    Adverse reaction to probiotics (histamine intolerance?)

    I do have the same consistent reaction to most probiotics. I don't have a good answer but have been considering several pilot studies showing higher levels of Lactobacillus and Streptococcus correlating with a worsening of mood, sleep and and other symptoms. It is a small study but seemed to...
  14. J

    Discouraging News for Canadian ME Patients

    Thanks for writing this...:)
  15. J

    Canada: Meeting with Policy Advisor, Ministry of Health

    Really good to hear this meeting took place. This is my first comment here. I'm from BC and have been watching the forum for a while but to ill this last year to comment or participate much. Big thanks to @ScottTriGuy, @Kati, @Old Bones and any others contributing. Well done!