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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    alcohol helps me?

    Lyrica acts very quickly and lasts for a couple of hours. It's not like antidepressants which take weeks/months to kick in. It's more like tylenol, which you'll feel within an hour and it lasts for a couple of hours. I can usually feel the effects of lyrica within an hour or two, and it...
  2. L

    alcohol helps me?

    I feel that you and I are in different subgroups of ME/CFS... I also take 100mg (50mg morning, 50mg night), but it works wonders for me (though only lasts a couple of hours each time). When I drink alcohol, it again does wonders for me (though it lasts only a couple of hours). Since alcohol...
  3. L

    alcohol helps me?

    Have you tried LYRICA (pregabalin)? I am the same way in that drinking hard liquor (not beer) improves my brain fog and energy levels. Lyrica actually gives me a VERY similar feeling (feel intoxicated without being sloppy), and it's the med that's helped the most for me. My memory is sharper...
  4. L

    What labs to do before starting IVIG/Rituximab?

    Wouldn't a positive result indicate autoimmunity though? Even if it is a low positive? They set a negative range, at-risk range, and a positive range. Could you tell me more about these patients? Did they have the JC Virus and develop PML? Did they get better once rituximab was stopped and...
  5. L

    What labs to do before starting IVIG/Rituximab?

    Yes, I did get the CellTrend antibody testing done two months ago, and I came back positive on 3/11 antibodies. however, they were not super high values; They were just a few points above the lower limit for the positive range. I was also in the "at-risk" range for a few of them. I, too...
  6. L

    What labs to do before starting IVIG/Rituximab?

    Hi, Before starting IVIG or rituximab treatment, are there any antibody tests I should have done? - I've read that since IVIG introduces lots of antibodies from the blood of thousands of donors, any antibody tests done while on IVIG would give you a false positive. - If I would like to...
  7. L

    IVIG Treatment

    Please keep us posted. Are there other PWME on the board who actually got better with IVIG besides Gingergrrl? I am in the middle of getting IVIG approved by my health insurance and would love to hear experiences about IVIG... I am really hoping IVIG will work for you, Navid.
  8. L

    Dr Park's 90% Recovery Protocol (LD-IVIG / IV Saline / ART / Nutrition) - What can we learn?

    I'm not 100% fluent but they are mostly negative. "I personally had no response (to his treatment). He's also a highly controversial doctor. I absolutely do not recommend him." "I, too, went to his clinic 15 years ago. The first day I went, while I was getting the shot, I could feel that I...
  9. L

    Unexplained exertional dyspnea caused by low ventricular filling pressures: results from clinical invasive cardiopulmonary exercise testing

    Hi @JollyRoger Is diastolic dysfunction a hallmark of CFS? Also, I consider myself pretty young still (31), and I sporadically go to the gym (mostly some light weightlifting) even though I fatigue very easily. I'm on the thin side and am not overweight. I'm unsure how large my left atrium is...
  10. L

    Dr Park's 90% Recovery Protocol (LD-IVIG / IV Saline / ART / Nutrition) - What can we learn?

    After some searching around online on S.Korean websites, it appears that this doctor is highly controversial among the Korean CFS community. I found a Korean-language forum for CFS and they do not recommend him. They also mention that he's a bit infamous and controversial... I would...
  11. L

    To CoQ10 or not to CoQ10

    This did nothing for me. I was told by a mito doc to try this out in case I might have a mitochondrial myopathy. I took a combo of high-dose CoQ10, ribaflavin, and L-carnitine. Did NADA!