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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. K

    Sunflower Oil and Sunflower Seeds Intolerance

    Thanks so much, d., that helps!
  2. K

    Sunflower Oil and Sunflower Seeds Intolerance

    dannybex, you know, good question, I would not be surprised if he is intolerant to borage oil, but maybe he gets more benefits than negatives with it, and also, I give him only one capsule every third day, it is a small amount in comparison with the amount of oils typically used for cooking. I...
  3. K

    Sunflower Oil and Sunflower Seeds Intolerance

    Alex, I am very interested in what you wrote because we did an 'Essential and Metabolic Fatty Acid Analysis RBC' at Genova, and found out my son's results 'strongly suggest impaired delta-6 desaturase. He does not seem to be able to convert linoleic acid into gamma-linolenic acid, and as a...
  4. K

    Sunflower Oil and Sunflower Seeds Intolerance

    Yes, thanks, I tried peanut oil, but he also react to it. Peanut shows up in his IgG test too.
  5. K

    Sunflower Oil and Sunflower Seeds Intolerance

    Yep, my autistic son has the same problem. He has intolerance (blood IgG) to most seeds and grains. Sunflower is a big one in there. But canola, safflower, etc... also show up. I have noticed that he is also intolerant to the oils derived from those. The only oils he can have now is olive oil...
  6. K

    Are some of us stuck in fight-or-flight mode?

    I've suffered from this 'fight-of-flight' state all my life, overreacting to any stresses, not only emotionally but also physically, with abdominal cramping, diarrhea, increased urination, dehydration, sweating, racing heart, with any stress, every day. True story: it all disappeared three...
  7. K

    stomach parasites

    Concerning Absinthe, it was very common in my home country (Switzerland) until it got banned for the reasons above. A few years ago it was made legal again since those toxicity claims seemed unfounded after all. In any case, even during the decades of ban, all the farmers I knew were still...
  8. K

    DID the FDA really take OSR1 off the market?

    Well I vaguely remember someone saying that Boyd Haley said that if OSR does not get FDA approval (that was before it was approved as a supplement, when everybody in the autism community was eagerly awaiting its release), he would give us the recipe to make OSR in our kitchen from other...
  9. K

    DID the FDA really take OSR1 off the market?

    Yep, I confirm that OSR was removed from the market. I got emails from supplier to stock up before the BAN effective end of July. OSR is not available anymore. I heard it might be available again as a drug if it passes FDA approval (so far it was approved as a nutritional supplement, not...
  10. K

    TRACE MINERALS--any suggestions?

    In the family we have all been using Minerall for a few years, which is now difficult to get. I like the fact that it does not include pro-oxidants like copper and iron. http://www.ourkidsasd.com/products/multi_minerals/2606%7CMinerAll%20Clinician's%20Formula%E2%84%A2-Clinicians%20Formula...
  11. K

    Born with ME

    This sounds like typical autism spectrum issues. But that does not say anything about the causes, of course. It is unfortunately so common these days. These things can help a HUGE deal children having these symptoms: fish oil (e.g. Coromegas for kids, or any fish oil), a good multivitamin...
  12. K

    My experiences with Alpha Lipoic Acid: benefits and side effects

    This is a timely thread because I have a recent experience to share. I started with 25 mg ALA twice a day a month ago. I initially had a good response, more energy, and even some (minor) come-back of libido, which I took as a very good sign because this has been below zero for years and nothing...
  13. K

    Safe ANTImicrobial/yeast herbs that don't effect ORGANS?

    If you want something that acts only in the gut and does not cross the gut/blood barrier, here are some I know. Those won't work in the rest of the body, of course, and won't affect other organs. Yeast: - nystatin - amphotericin B Anaerobic bacteria: - vancomycin
  14. K

    stomach parasites

    Wow, interesting. I had never heard of this earth before. What exactly did you see? Big things? What were they looking like? Also, how can we be sure that this earth does not include eggs of something? Did you have any side effects from taking this earth? Does it irritate the gut or not? Thanks.
  15. K

    Anyone have a bad reaction to b vitamins, specifically b6 and b12?

    I think it is common to have reactions to B vitamins. That's why I avoid complexes and try one at a time. Concerning B6: I would start low (e.g. 10 mg) and make sure to take magnesium with it, and increase as tolerated. Magnesium and B6 work together. Also, I do 1/2 P5P and 1/2 regular B6...
  16. K

    CNN Heroes: Nominate Annette Whittemore

    How about nominating Annette Whittemore or Judy Mikovits CNN Heroes for 2010? I heard the nomination deadline is August 1st: http://www.cnn.com/SPECIALS/cnn.heroes/nom/
  17. K

    Gluten and autonomic problems

    Other ideas for GF snacks: - Bake a whole chicken (does not require a lot of standing, takes just 2 minutes to prepare): place the whole chicken in an oven dish, salt it and put in the oven at 380F for 2 hours. That's it. Keep in the fridge for quick snacks of cold meat for a few days (with...
  18. K

    Gluten and autonomic problems

    I have been GF for three years. I find it easier to do if you cook everything from scratch and keep it very simple (e.g. one meat, one vegetable and rice or potatoes, for example). Make sure to have enough GF snack available so you don't cheat with something bad, e.g. bananas, fresh fruits...
  19. K

    Weird Bruising

    I get these 'bruising crisis' a couple times a year that last a couple weeks. It is very strange, because my kids also get this, and sometimes we are even synchronized. So I am wondering what kind of phenomenom this is, but I have a feeling it might be related to some gut problem (just a guess)...
  20. K

    Depressed 4 year old - ADVICE PLEASE?

    I am sorry. It is so difficult to see our little ones suffer. I have a five year old with autism (very high functioning now after over three years of intensive biomedical treatments), and a four year old who is neurotypical (but has the food allergies and gut issues too). Here are two things...
  21. K

    Reasons for CDC deplorable conduct

    From what I understand, the murine close relative to XMRV, MLV, has been around for thousands of years in mice (it was discovered in the 70's). But XMRV, the human version of MLV, I have never heard anyone saying it's been around for thousands of years, or it would have become an endogenous...
  22. K

    Reasons for CDC deplorable conduct

    I just copied what I posted yesterday on another thread. I think it belongs here more anyways. I hope I did not break rules by copying one of my previous posts? 'I am wondering if the problem is not simply lack of money allocated for this project at the CDC. When you read 'And The Band Played...
  23. K

    More comments on CDC negative XMRV paper.

    I am wondering if the problem is not simply lack of money allocated for this project at the CDC. When you read 'And The Band Played On', this is the main problem at the CDC: asking researchers to deliver but not giving them any money for doing so. The book describes how researchers could not...
  24. K

    Post-mental-exertion malaise

    Thank you again everyone for your replies and for sharing your stories. In my case, it seems to be stressful mental activity, or emotions, like anger, fear, anxiety, that causes me problems. Also being in social situations is draining, for example a family reunion or meeting with friends is...
  25. K

    Post-mental-exertion malaise

    Thanks. I've been looking into the yeast thing, and taken various prescriptions as well as herbs like grapefruit seed extract, caprylic acid and oil of oregenao. I also take tons of probiotics. What helped the most was changing my diet, low carbs low starch low sugar. I also did an organic acid...
  26. K

    Post-mental-exertion malaise

    Thanks you again so much, Rich, for your replies. I appreciate a lot. If only I could understand more about what is going on with me, maybe it could also help my son. Here is what I am already doing: methylB12 injections every three days to help the methylation cycle (have done so for over...
  27. K

    Post-mental-exertion malaise

    Thanks Rich. My doctor prescribed a test where I had to spit in tubes 4 times over the course of 24 hours. The cortisol variations throughout the day were normal...
  28. K

    Post-mental-exertion malaise

    Thanks to everybody who replied. I definitely need antidepressant drugs or I cannot function. But I was wondering if there was more than neurotransmitters involved, maybe some inflamation in some parts of the brain, that would be triggered by a peak of one stress hormone or something like...
  29. K

    Post-mental-exertion malaise

    I was wondering if anyone was in the same situation or had an explanation for this. I do not suffer from post-physical exertion malaise, unless I push myself too much, however, I always suffer from post-mental-exertion malaise. That is, if I am under stress, or angry (for example today I got...
  30. K

    I need some help regarding B12 self injections

    I do one injection every three days of methylcobalamin 3750 mcg in the fat of my buttock. Injection in the buttock fat, close to the surface, ensures that the B12 leeches slowly into the blood stream over a course of 3 days. If it is injected somewhere else or too deep, it goes into circulation...