• 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. S

    Sulfur Deficiency and Sun Exposure

    Being in direct sunlight makes me feel really terrible. My doctor tells me that 1/5 of his ME/CFS patients report the same phenomenon. Does anyone else experience this, and what could be a possible explanation? Thanks, Sandra
  2. S

    Checking in with Low and Slow PWCs

    Hi Therron, I just wanted to offer some moral support. Unfortunately I dont have any suggestions, as Im one of the low and slow brigade myself, with a high intolerance to supplements. Im now in the 13th week of my third attempt of Richs protocol, and Ive only worked up to 2,000mcg HB12 and...
  3. S

    Which Strep Species Make H2S? + Need Antibiotic Input

    I get rifaximin at a compounding pharmacy here in Sydney for aud$100.00 for a bottle of 56 500mg capsules. I don't know if they service overseas customers, but this might be a cheaper option for many of you if they do. If anyone wants to know, I could find out. All the best, Sandra
  4. S

    Adrenal Issues and treatment problems

    Hi Cindi, My systolic ranges as well, but not as much as yours. I fluctuate between 80 - 95. I can't tolerate any of the medications to raise BP. All the best, Sandra
  5. S

    Feeling COLD?!

    Another coldie here. My temperature is usually around 36.2C (96.8F) and I start to get into summer clothes at 30C (86F). Thank goodness we're coming into summer here. All the best, Sandra
  6. S

    Rituximab and Mebendazole (Vermox) - A possible similar mode of action?

    Theres a slight possibility that I might have stumbled across a link between the mechanism of action of rituximab and mebendazole (Vermox), and there connection to autoimmunity. There was a thread started by Justy a couple of months ago where a few people noticed some improvement in symptoms...
  7. S

    treatment for worms has helped my gut a bit but why?

    A month ago I decided to give Vermox a go, and to my amazement I experienced a symptom improvement. This is really unusual for me, as I tend to be one of those people, who either doesnt react to treatments, or reacts badly. I used the dosage suggested by Smygen (post #34) i.e. 200mg twice a day...
  8. S

    Various Theories for Autoimmunity

    Here is a clear and simple explanation of autoimmunity, and the various theories behind its cause. http://Immunedisorders.homestead.com/autoimmune.html An autoimmune disease is different in that the immune system is attacking self - parts of you. Its an immune system gone awry. Theres...
  9. S

    Truth or Dare

    I love this analogy. It wrings so true for me.
  10. S

    Truth or Dare

    Thanks so much Ahimsa. We live in a predominantly sighted world, and I negotiate it pretty well, but sometimes I need a helping hand, so thanks for offering yours :D.
  11. S

    I had another collapse today :(

    Hi Tania, Youve probably already looked into my suggestions, but Ill share what I do to get by anyway. Coles and Woollies have online supermarket shopping and deliver to the door. There is a delivery charge, but its not too much, especially if you dont specify a specific delivery time. I...
  12. S

    How to join and start a Rituximab trial

    I discussed Rituximab with my doctor yesterday during a phone consultation. He indicated that hed had 2 patients in the past with RA who had Rituximab, but he wasnt aware of any improvements in their ME/CFS symptoms. He then went on to say that this doesnt confirm no improvement, only that...
  13. S

    Truth or Dare

    Thanks Valentijn. This is such a black and white statement, whereas in reality, life is shades of grey, with many complexities. Implicit in the quote is the notion of the resilience to bounce back in the face of adversity, which is often viewed as pressing on regardless. Alternatively...
  14. S

    Truth or Dare

    Could someone please describe this graphic to me? My speech screen reader cant interpret a graphic. Im really intrigued what everyone is talking about. Thanks, Sandra
  15. S

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi Rydra, Can you find me an avatar that speaks? Lol. Actually Im totally blind so I just dont think in terms of pictures. Maybe I should start a thread asking people to give me a verbal description of different avatars, and then I could pick one which I think suits my personality ;-)...
  16. S

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi Rydra, My first 2 readings are disastrous, but the last 2 are fine. I always thought that the first 2 morning readings were far too low, but my doctor, who is usually up on these things, said that they were ok. Also, when I sent Dr Sarah Myhill a number of test results for comment, she...
  17. S

    Plug for Olive Laf Extract - the Quintessential Anti-Everything-Pathogenic

    There is one caution against the use of olive leaf extract. As it is a vasodilator, it shouldn't be used by people with low blood pressure. My daughter and I both have very low blood pressure and find that it is deadly for us. All the best, Sandra
  18. S

    lithium experiences

    Hi 3CFIDS, Youve just described me exactly. Most things I try have a paradoxical reaction, so much so that I vowed a couple of months ago that I was going to stop ordering supplements in the hope that they would work. Well I cracked, and I received a bottle of lithium orotate and...
  19. S

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi Rydra, Thanks very much for these links. I'll check them all out when I'm in better cognitive shape. I supplemented with DHEA about ten years ago, and honestly can't remember whether I stopped then because of side effects or no result. When you've tried as many things as I have over...
  20. S

    THE METHYLATION CYCLE BLOCK

    Hi Andrew, I am on my third attempt at the methylation protocol. I originally played around with both Rich and Freddds and ended up completely debilitated. I was concurrently on the Myhill protocol with a strict diet and heaps of supplements however, so it is hard to say what was actually...
  21. S

    Langelaan, '07: CFS patients worse on every dimension of EQ-5D than visual impairment

    Hi Dolphin, I certainly didnt interpret your post as if you had anything against blindness in any way. In fact, I completely agree with the point illustrated by your post. All the best, Sandra.
  22. S

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi all, Here are my recent saliva cortisol results: 8am 7 Midday less than 5 6pm 8 10pm less than 5 These are all in the lab reference range, and when I queried the values with my integrative medical practitioner, he told me that they were ok because no one really knows the...
  23. S

    Langelaan, '07: CFS patients worse on every dimension of EQ-5D than visual impairment

    Hi Dolphin, I find your post personally particularly interesting. I am totally blind, and prior to the onset of ME, I attained a university degree, held down a well paid job, had a busy social life, travelled overseas several time, got married and had a daughter. In fact, I would have...
  24. S

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Hi all, I have a question regarding the mechanism of action of Rituximab versus some of the immune modulators used by some ME/CFS patients. My understanding is that Rituximabs effectiveness is through the depletion of B cells. Do any of the modulators like LDN, GcMAF, Nexavir, Cycloferon...
  25. S

    Doctor's Data Lab offers a plasma methylation profile test

    Hi Rich, I'm in the process of trying to organise the Health Diagnostics methylation panel from Australia, and am waiting to hear back from my local path lab regarding arrangements for blood collection and transport. As nothing has been confirmed at this point, do you recommend that I...
  26. S

    Nexavir Experiences Please?

    Hi Sushi, Thanks for the alternative technique. I certainly have a lot to consider. All the best, Sandra
  27. S

    Nexavir Experiences Please?

    Hi Soxfan, Thanks for telling me about your experience with nexavir. A firsthand account is invaluable. The issues with subcutaneous administration alone, would certainly knock it out of the ball park for me. All the best, Sandra
  28. S

    Nexavir Experiences Please?

    Hi Heaps, I looked into cycloferon again through the thread you started, and I actually think it might be a goer for me. I was under the misapprehension that it was only administered by IM injenction, but now I know it's in tablet form as well. Nexavir is subcutaneous which I can handle...