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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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  1. JollyRoger

    Vagus denervation changes blood flow (in sheep)

    https://www.ahajournals.org/doi/10.1161/CIRCRESAHA.123.323017 Cardiac Vagal Nerve Activity Increases During Exercise to Enhance Coronary Blood Flow Julia Shanks, Mridula Pachen, Joshua W.-H. Chang, Bindu George and Rohit Ramchandra Originally published 29 Aug...
  2. JollyRoger

    Immunoadsorption not effective (study)

    For me this study is not convincing. It's not a randomised double blind study. So the effect could be placebo. And, if you look at the graphs the change is not really spectacular: Some were even worse afterwards. I think the results will be the same like the study with Rituximab. Don't get me...
  3. JollyRoger

    Immunoadsorption not effective (study)

    People hope that therapies like BC007 or immunoadsorption will be the salvation. But they are going to be disappointed soon. Autoimmunity seems to be a red Hering. The same thing happened with Rituximab. And they repeat this observation again and again.
  4. JollyRoger

    Immunoadsorption not effective (study)

    Hi, I found a new study about immunoadsorption for Long COVID sufferers. Unfortunately, its in German. The English article will be available in two weeks according to the website...
  5. JollyRoger

    Ezrin Peptide Therapy

    Improvement sounds good . I was skeptical at first because all the studies were from Dr. Holms and his own company so there is a conflict if interests. Did you use injections or pills?
  6. JollyRoger

    Ezrin Peptide Therapy

    Has someone heard something about this therapy? It seems to be around for three decades. Like bacteriophages it comes from the former Soviet union so maybe there is a potential we don't know. Here a short introduction: Ezrin Peptide Therapy: A Potential Treatment for COVID. Ezrin Peptide...
  7. JollyRoger

    Weird case of covid (no antibodies, two possible infections)

    This could be right for the first infection since the CT value was quiet high ( in Germany every value over 30 is considered to be not contagious) and the lack of antibodies after the infection. But since Paxlovid rebounds are a big thing I'm still thinking about other options. And I'm not sure...
  8. JollyRoger

    Weird case of covid (no antibodies, two possible infections)

    I'm so sorry for the the misunderstanding::bang-head: I mean, I have antibodies (around 500BAUs 10 months after the last shot) but it didn't rise during and after the infection. I edited my post to avoid the confusion.
  9. JollyRoger

    Weird case of covid (no antibodies, two possible infections)

    Hello, I've caught COVID a month ago (PCR positive; CT 31,5, mild symptoms). Fortunately, i found a doc who prescribed paxlovid because of my CFS and small fiber neuropathy so I started it the fourth day. My PCR test was negative four and fifteen days after my infection. I did an antibody test...
  10. JollyRoger

    Biontech reprogramms immune system

    Thanks for the response... Well, they actually dont „come up to the expectation“. The figures don’t show what seems to be a big suppression; its rather a fluctuation. I was just afraid because im not good with this stuff and this title caught me immediately.
  11. JollyRoger

    Biontech reprogramms immune system

    Hi guys, found an interesting article: https://www.medrxiv.org/content/10.1101/2021.05.03.21256520v1 It is not peer–reviewed but still very disturbing. The response of innate immune cells to TLR4 and TLR7/8 ligands was lower after BNT162b2 48 vaccination, while fungi-induced cytokine...
  12. JollyRoger

    i need help with a crash

    Im so sorry for you, Loba! Does the IVIG has any positive effect on you? Does the side effects really outweight the benefits? A cure, that is worse than the disease, makes no sense. Do you have to pay the IVIG on your own? I know the situation in Germany is the worst. The only specialist in...
  13. JollyRoger

    Anyone feel BETTER after getting the Covid vax?

    I think the biggest „study“ is Israel: 3.1 Million people got the vaccine. There is a higher risk for facial nerve paralysis (30) but most of them recovered. https://en.globes.co.il/en/article-covid-vaccine-side-effects-in-israel-match-trials-1001359338 Also this type of vaccine was already...
  14. JollyRoger

    Anyone feel BETTER after getting the Covid vax?

    At the I do some research regarding the vaccines and the immune system. i found an interesting article about Moderna+BionTech and Th1/Th2 balance: In addition to evaluating humoral response (ie, neutralizing antibody titers), cellular immunity was also evaluated. mRNA-1273 demonstrated...
  15. JollyRoger

    Astrazeneca as a potential treatment?

    But is it not a general activation of the Th1 axis? The Bcg vaccine also triggers the immune system, for example, and is helpful against covid...
  16. JollyRoger

    Astrazeneca as a potential treatment?

    I do some research regarding the vaccination (Vaccine Yes/No?; which one; etc.) And in one article I found the following statement about Astrazeneca: They report that the proteins – known as cytokines – which allow T cells to generate ‘signals’ to the rest of our immune system produced by...
  17. JollyRoger

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    Does anyone know if he plans to have a study to check the cofactor in me/cfs patients? Im just 3 hours away from Wurzburg. They also found my small fiber neuropathy there...
  18. JollyRoger

    Artificially induced fever

    High fever, of course:D I also had a severe headache and trembling. But everything went back to normal after 2 days. I had no relapse...
  19. JollyRoger

    Artificially induced fever

    I had this therapy. They used bacterial toxins to induce the fever (Great Th1 Booster). You get the fever usually 1-2 hours after the injection. My fever started four hours after the injection. My blood oxygen dropped to 93%. Both things never happened in their clinic (even not in all the cancer...
  20. JollyRoger

    Crps (local) = Cfs (global)????

    There are a lots of similarities between crps and cfs for example the finding of the same autoantibodies and the successful treatment with rituximab. (http://forums.phoenixrising.me/index.php?threads/crps-with-dysautonomia-patient-treated-with-plasma-exchange-and-rituximab.37725/) I'm wondering...
  21. JollyRoger

    Further research into adrenergic autoantibodies

    IVIG are often used for autoimmunity; guillain barre syndrome for example. But only in special cases and as last resort. The number one treatment for autoimmunity is prednisolon. For a pseudo disease like cfs you will never get a prescription for such a treatment. We only have the charite in...
  22. JollyRoger

    Further research into adrenergic autoantibodies

    Yep I'm from Germany; and the prices here are horrendous. IVIG are only paid for certain indications like low immunglobuline level.
  23. JollyRoger

    Further research into adrenergic autoantibodies

    I also found this: In the first few months of abnormal sympathetic function (acute RSD/CRPS during the first 6 months) the sympathetic and parasympathetic systems show a significant plasticity and can adjust their activities to preserve the immune system. However, after two to three years...
  24. JollyRoger

    Further research into adrenergic autoantibodies

    I found an interesting article that the very same autoantibodies appear in crps - an intense pain after a trauma. Complex Regional Pain Syndrome and Dysautonomia in a 14-Year-Old Girl Responsive to Therapeutic Plasma Exchange In addition to her right leg pain, she began to experi- ence...
  25. JollyRoger

    Further research into adrenergic autoantibodies

    I think that at the moment IVIG is the best treatment for us because it treats both autoimmunity and infection...it rebalances the system. If you don't know the cause for your problem than this treatment do no harm. The problem are the costs...i can't find someone who would prescribe it for me...
  26. JollyRoger

    Further research into adrenergic autoantibodies

    I read that beta 2 adrenergenic antibodies are often found in persons with an allergy, asthma or even in an pre-allergy state. 22% of the population for example have allergic rhinitis. And an allergic respond is often caused by a th1-> th2 shift like in cfs. Here are some studies...
  27. JollyRoger

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

    http://phoenixrising.me/research-2/the-heart-of-the-matter/cardiovascular-issues-in-cfsme-part-iii-assessing-diastolic-heart-failure Probnp is a cheap blood test. The other values are easy to assess in an echocardiography of the heart.... both are usually standard tests for the heart.
  28. JollyRoger

    A biomarker in low NK cell activity...

    It definitly helps. Several tnf alpha and nitrotyrosin (nitrosative stress) tests were very low; no inflammation so far. No oxidative stress. Low s100 and ecp. (brain) No mold infection. Only low cd57 (autoimmune or infection?) At the moment i make .several tests for toxics. I should be the...
  29. JollyRoger

    A biomarker in low NK cell activity...

    Yeah.... in the beginnings I always had a sore throat. I went to the doctor and he made a swap and found very strange bacteria there. He said that usually a healthy person doesn't deal with them and only people with a weak immune system like aids patient have problems with them. But why do I...
  30. JollyRoger

    A biomarker in low NK cell activity...

    Lyme is negative but we all know the problems with a correct Lyme diagnosis. Although my CD57 is low with 28.