• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. I

    Attempting to identify members of my subgroup - Subcutaneous Fat Loss

    Yes. I have this. Only 4% body fat. Very skinny, weight loss, muscle loss, loose skin, veins can be seen in hand.
  2. I

    Vitamin C worsening symptoms (sodium ascorbate)

    How much vitamin c do you take every day? I cannot go above 6 gram per day sodium ascorbate. I am taking it from last 3 months. Still cannot go above 6 grams.
  3. I

    Considering brain surgery...any feedback?

    I am totally against brain surgery for epilepsy. You will lose more then what you will gain. And what you will loose will be permanent. Success rate of brain surgery of epilepsy is very low. So do your research before you go ahead.
  4. I

    Labs finally point in the right direction?

    @jtex Are you still taking iron IV or have stopped IV iron? Also what was your real issue ? Please describe in detail. Thanks.
  5. I

    Supplements found to be fairly useless

    Not many only few supplements are manufactured by those big pharma. Just compare the number of supplements manufactured by supplements industry Vs big pharma. And also big pharma manufacture supplements for name sake. On other hand they release research paper on supplements being useless. Your...
  6. I

    Supplements found to be fairly useless

    Supplements are very helpful and their benefits are suppressed by big pharma Industry as they don't want to loose trillion dollars worth money. I will talk about just one vitamin. And that is vitamin c. Just go to the website doctor yourself dot com and see the benefits of vitamin c. This...
  7. I

    whole spine burning, do you have it?

    Yes. I have very severe burning brain symptoms from several months. I posted about that in this forum. It has reduced now but still severe. Stress makes it very severe in intensity so stress of is a trigger for me. Till now I haven't found any cause and cure for it.
  8. I

    Low blood pressure

    What u are describing is known as OI orthostatic hypotension. And yes OI will cause immense fatigue and tiredness and will also cause dizziness lightheadedness due to blood not able to reach brain when in upright position.
  9. I

    Lost head/brain volume

    This picture explain how my whole brain head skull is reduced. I know microcephaly is inborn problem but I have transitioned from healthy normal head size to smaller head but not as small as microcephaly. Microcephaly is very very small head. I can say I am in between microcephaly and normal...
  10. I

    Lost head/brain volume

    Not just photo. I can see myself in the mirror and I knew from inside my heart my whole head had shrinked from before when I was healthy and have no me CFS. My height of face is still same but width is smaller then before. Also it was a slow process. It took 3-4 years of severe head related...
  11. I

    Lost head/brain volume

    After more then 3 years into full blown ME CFS and OI/POTS. I have lost 25 percent of my head volume. Before my ME CFS and after MECFS I compared my photo and I can clearly see my head had shrinked to 75% from before. So have lost 25% of my head/brain. My head is small now. Do any body notice...
  12. I

    Created big reduction in symptoms - unsure how to progress

    Lol. The most threatening disclaimer I have ever read.
  13. I

    What Vitamin C product is good?

    Do you still take ascorbic acid 24 gram per day? I have seen many people saying vitamin c have no benefit for ME CFS.
  14. I

    Burning brain

    I have tried ALC in the past but in low dose and it has no effect on me. ALA I will give it a try and see if it help or not. Thank you very much for sharing what help you.
  15. I

    Burning brain

    Yes. Exactly. You described it perfectly. Its like acid in the brain burning. Its not heat or fire type burn. It's like some kind of acid release in the brain due to exertion like mental task. I have in the past very severe version of this symptom. But now it's not so severe but still severe.
  16. I

    Burning brain

    Yes. I have tried cold water on whole head instead of ice and it doesn't benefit me at all. The burning is actually from instead and not outside. And ice and cold water make whole head cool from outside only. Actually the feeling is like burning in brain and I don't knew what is the exact...
  17. I

    Burning brain

    Lactic acid buildup make sense. Because it happens after mental exertion. Like stress, excess emotion whether good or bad, studying etc
  18. I

    Burning brain

    Hi, Anybody have burning brain? When I have PEM I get burning brain immediately. It's like some kind of inflammation in the brain. It comes with mental fatigue. If I rest for some hours like 3-4 hours then brain burning go away. Anybody knew why it happens? Thanks
  19. I

    OI, Dysautonomia

    What about fludrocortisone? It is so helpful for my OI.
  20. I

    Blood test results - help to understand please

    Yes. Yellow eyes juandice with high billirubin of 14 is Gilbert syndrome.
  21. I

    Some questions for those who have been taking vitamin D3

    Vitamin d increases blood pressure by causing vasoconstriction. Vitamin d decreasing blood pressure in someone is due to cofactor deficiency/refeeding syndrome.
  22. I

    Drinking baking soda (sodium bicarbonate) may treat autoimmune disease

    Sodium bicarbonate can be fatal in high dose. So be careful not to over do it.
  23. I

    First time in remission with ketogenic diet

    @leokitten Which supplements are you still taking with the keto diet? OR Have you stopped all the supplements on the keto diet? And thank you very much for sharing your experience and so many tips about keto diet.
  24. I

    Is anyone here using MitoSynergy copper?

    Copper in food is cu+2 and not cu+1. Actually it depends. Vegan food like vegetables have cu+2 and animal food like meat have cu+1. Same like iron copper has 2 type.
  25. I

    Result of heavy analysis

    I am currently following orthomolecular therapy to chelate toxic metals from my system. If anyone know how to chelate excess toxic manganese from the body please share. Thanks.
  26. I

    Labs finally point in the right direction?

    Mine is at 500. My doctor is not ready to give iron IV with such high ferritin. Now I will have to find new one. And many thanks for sharing your experience.
  27. I

    Labs finally point in the right direction?

    Wow. Nice to hear iron IV helped you. Do you know your ferritin level? Thanks
  28. I

    Labs finally point in the right direction?

    How IV iron is safe in anemia of chronic disease? Why oral iron tablet is toxic and IV iron not? Any studies you have to support this ? Isn't it IV iron go to blood directly and immune system again store iron from blood in ferritin and not transferrin? Thanks
  29. I

    High Ferritin

    I see all your symptoms are actually ME/CFS one. So it has nothing to do with high transferrin saturation. As you already said you have all those symptoms before high transferrin saturation. Also I will recommend you to retest after some time. Because only one time reading not in the range can...
  30. I

    High Ferritin

    Blood taken in 2017 should not effect you know. If it is recently taken then only transferrin saturation will be high. I will recommend you to wait for some time and retest. Do you have any symptoms due to high transferrin saturation?