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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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Search results

  1. L

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I looked at Bob's Red Mill unmodified potato starch and it says it has 40 calories per tbsp. I thought this resistant starch was not digestible by humans, so why the 40 calories per serving? I started with 1 tsp. and noticed nothing and am up to 1/2 tbsp. now with still nothing noticed. Is this...
  2. L

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I am interested in this idea of resistant starch as a prebiotic. This is a very intimidatingly long thread, so would anyone be kind enough to sum up the benefits and what starch to start with? Just a short summary and possibly the benefits they have received. Thanks, I would really appreciate it.
  3. L

    Problems with the new IOM criteria

    I agree. If they want to use a broad definition like SEID, they need to admit that some of us actually suffer from ME and list the symptoms of that also. Either they divide the illnesses or they need to use various stages of the illness, like they do in MS. I don't think SEID is going to get...
  4. L

    CFS is a metabolic condition!

    Wow, that video from Dr. Klimas sounds like a sales pitch. It reminds me of a doctor who took me for a lot of money back at the beginning of this nightmare. He claimed to have cured himself from fibromyalgia and now had the sacred cure only he could provide. Vitamin D3 seems to be involved in...
  5. L

    Dr. Judy Mikovits Interview re: "Plague", WPI etc.

    I just received the book. One of the reasons that I want to read it is that Judy was under a gag order when all of this went down. It is only fair to give her a chance to tell her side of the story. Things have been made to look all one way and so many were piling on during this gag order...
  6. L

    Does anyone else have ME and MS????

    ME lesions are different than MS lesions in that they are smaller (punctate lesions) and are not placed in the same pattern in the brain. Also, MS lesions tend to change, clearing up, getting smaller, new ones developing. When new lesions develop, there are usually very obvious neurological...
  7. L

    Had a very good appointment with Prof. De Meirleir

    What ever happened to those patients that were almost cured by unstated therapy at the WPI? I seem to remember a lady that lost her wheelchair dependence. What do they offer now?
  8. L

    First hint of 'life after death'

    This is the part about near death experiences that takes the discussion out of how long someone can maintain a degree of consciousness or whether the brain is playing tricks on the mind. How exactly can someone recall things they could not have been physically seen from their vantage point...
  9. L

    Burning skin - does anyone have something similar?

    Inester7, do you get burning skin or just inside the brain/spine? I have not found anything that helps much with the burning. Do you take a particular product or just any kind of the two you mention? Ala, I guess is alpha lipoid acid. Would you mind sharing the product names and dosages you use...
  10. L

    Burning skin - does anyone have something similar?

    Small fiber neuropathy can hurt/burn any time. It does tend to get me in bed though, while trying to sleep. My skin never turns red except for facial flushing. I think the burning pain is worse when I am sickest or about to flare up. This is exactly how it feels. Feet like ice, but burning hot...
  11. L

    Burning skin - does anyone have something similar?

    In some patients with fibromyalgia, they have found small fiber neuropathy. http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve
  12. L

    Burning skin - does anyone have something similar?

    I agree it sounds like small fiber neuropathy. They can test for it with a skin biopsy. Treating it is difficult. They tend to use seizure drugs and antidepressants. The difficulty arises because they usually use high doses of some of these meds(especially anticonvulsants) and ME patients don't...
  13. L

    Innate Immune Changes in the Peripheral Blood

    I am not emotionally attached to any particular cause of ME. I am emotionally attached to finding the cause/causes involved in the pathology. Horses (ideas) have to be allowed to run before we can find out who wins the race.;) We need real science done on the findings we have now. It seems too...
  14. L

    Innate Immune Changes in the Peripheral Blood

    I do wish someone would get excited about something. The innate immune system needs a closer look in ME. Some follow up studies on the SFFV antibodies are warranted. It could be a new autoantibody that helps to break this decades old puzzle. When you look at what finding the autoantibody means...
  15. L

    Warnings about taking some meds when ill

    What were your symptoms when you had these episodes of severe hyponatremia? I wonder because I take ACE inhibitors also.
  16. L

    Innate Immune Changes in the Peripheral Blood

    We don't need antibody negative CFS patients. We are trying to evaluate a subgroup, those who produce antibodies to SFFV. These need to be compared with healthy controls who do not react to SFFV. They have already shown correlation with immune features. If they can show repeatable results of...
  17. L

    Innate Immune Changes in the Peripheral Blood

    I would really like to see some further research using this antibody reaction to SFFV in ME patients. A study with patients that test positive and an equal number of controls. Most arguments against this research has been either against the significance of this reaction or the off topic...
  18. L

    Anyone else taking Citicoline?

    Interesting article on Levamisole and CFS. http://www.jacionline.org/article/S0091-6749(96)81098-0/pdf
  19. L

    Project description of ME/CFS treatment with TNF-alpha inhibitor Etanercept (Enbrel®)

    I agree that Rituximab can be an amazing drug for some diseases. I have taken it and it did help my ME, but it also damaged my lungs. As far as TNF inhibitors are concerned, I have seen some patients do very well with one and not respond to another(not related to side effects or antibodies, just...
  20. L

    I strongly need help!

    No, I don't take magnesium and zinc at the same time. I do eat 3 cups of dark leafy greens raw each morning. I found the Wahl diet on line. It was formulated for MS, but Dr. Wahl thinks it might be useful for neuro-iimmune diseases. She started out with supplements, then went to getting the...
  21. L

    I strongly need help!

    Talk with the doctor tomorrow. He may be willing to run some tests on your zinc, mg, b2 and b6 levels. I have a lot of problems with zinc and B vitamins also. They tend to cause neuropathic symptoms, if I get too much. I don't absorb Mg very well. I found that getting nutrients through food...
  22. L

    In Belgium to see Dr de Meirleir

    Hi Valentijan, so glad to hear you are doing better. I have not read this entire thread, so I have a couple of questions, if you don't mind. I understand you have Lyme Disease and are getting IV antibiotics. Did you try oral antibiotics first? Did they help you and were there side effects? Also...
  23. L

    Project description of ME/CFS treatment with TNF-alpha inhibitor Etanercept (Enbrel®)

    What exactly does this mean? Are you talking about something that really helps RA or just a dream that you had? If ME is an autoimmune disease, the drugs that help PwME will be very individualized. It is that way with all autoimmune diseases. One TNF Alpha inhibiter will help one person and do...
  24. L

    Serotonin the new 'Cure All'

    I have only been able to tolerate one SNRI at the smallest dosage. It helps me sleep, but I think it is the antihistamine in it that actually helps. I recently heard at a seminar that psychiatrists have discovered why there is an increased risk of suicide when people start an SSRI. They said...
  25. L

    Result Igenex?

    I have not tried IVIG because I do not know how to get it prescribed for me.
  26. L

    Result Igenex?

    Hi maryb, it has been a few years ago, so I have forgotten a lot of the antibiotics I tried. I know I started with Doxycycline and I could tolerate low doses of it. It did not touch the disease however. I remember Flagyl being particularly tough on me. I also tried Quinine. I actually had one...
  27. L

    Result Igenex?

    I have a positive test by Igenex. Tried antibiotics off and on for a year. Never got to where I could stand the terrible pain they caused. Nothing would touch the pain and there is a limit to what one can stand. Hope you fare much better.
  28. L

    Inclined Bed Therapy

    Interesting to hear that others feel chest discomfort when lying flat. I feel too much energy in the chest and head area when flat. I always get head and chest pain each night when I sleep. It takes a long time to recover from sleep, but have to sleep. I think I will try raising the bed. Thanks...
  29. L

    The third (second open) IOM meeting May 5th

    It appears that they are going to control the information presented, so the conclusions will be led towards ME being a somatoform disorder. Control the information presented and this controls the conclusions that are reached. There is little chance that what we want presented will be. If we...