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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. Aubry

    ARA-290

    How are you feel these days on ARA?
  2. Aubry

    BC-007: Successful drug against Autoantibodies helps with long COVID

    I have always borderline elevated IOP
  3. Aubry

    Post Lyme Treatment with KDM

    How can anyone still believe in this lyme and co-infections nonsense?
  4. Aubry

    Phage Borrelia qPCR - is false positive possible?

    They can claim what they want. But unless there are peer reviewed studies (with healthy controls) I don't believe this test. I test positive/negative on this test like lottery. And antibiotics never improved me either.
  5. Aubry

    Post Lyme Treatment with KDM

    They can claim what they want. I only believe controlled studies. Until then this test is totally unreliable.
  6. Aubry

    Post Lyme Treatment with KDM

    Borrelia wpcr phage test has not 1 published study peer reviewed or tested with healthy controls...
  7. Aubry

    Post Lyme Treatment with KDM

    Did you search for other pathologies? Sjogren, dysautonomia, mcas, dysbiosis. My impression is people stick way too long whit a very questionable diagnosis as chronix lyme...
  8. Aubry

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    I know. FDA didnt want to loose whole humira market. It is rather hypocrite they did approve another JAK inhibitor that is more dangerous lol
  9. Aubry

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    I heard a patient who will try filgotinib soon.
  10. Aubry

    Abilify- Stanford Clinic Patients

    I will try 0,5mg Abilify soon. Hope it will help me to some extent. I also have primary sjogren next to ME
  11. Aubry

    Documentary: Undercover in German Lyme Clinics

    Ya sure... 90% has Borrelia Miyamotoi now lol. Its bullshit.
  12. Aubry

    Documentary: Undercover in German Lyme Clinics

    Why would I treat results based on invalid tests? I have sjogren and small fiber neuropathy. I never had Lyme.. its nonsense this test.
  13. Aubry

    Documentary: Undercover in German Lyme Clinics

    Guess what... I test positive now for 3 2 1 ... BORRELIA MIYAMOTOI :rolleyes:
  14. Aubry

    Wallukat's Bioasssay Autoimmune Testing Panel - Any info on this?

    I tested positive for 2 auto-antibodies at BerlinCures (Wallukat).
  15. Aubry

    Post Lyme Treatment with KDM

    How are you feeling today on dsf?
  16. Aubry

    Immunosuppressive treatment for peripheral neuropathies in Sjogren’s syndrome – 2020

    Yes. But in fact the positive lip biopsy was was enough for a 100% sjogren diagnosis (golden standard test). Together with small fiber neuropathy was easy to make the link neuro+sjogren :) I still hope the Coimbra Protocol will work since IVIG is not a walk in the park either...
  17. Aubry

    Immunosuppressive treatment for peripheral neuropathies in Sjogren’s syndrome – 2020

    Thanks for this information. I am recently diagnosed with Primary Sjogren Syndrome and Small Fiber Neuropathy via ankle biopsy. I had positive lip biopsy for Sjogren (focus score >2), highly elevated anti-SSA antibodies. I don't have SICCA symptoms. My rheumatologist concluded I suffer from...
  18. Aubry

    Post Lyme Treatment with KDM

    I am so tired of this. First it was lyme, then it was gut, then lyme again, then gut, now lyme again ? I also got Disulfiram protocol but still did not start yet. I am trying currently IVIG and I don't want to combine both in first months for possible results. I don't want to herx again for...
  19. Aubry

    Autoantibodies and ANAs

    Problem is what can you do with a Sjogren Diagnosis? I feel rheumatologists don't know a lot about it. They only gave me Plaquenil ... I read in advanced cases (bloodwork, not symptoms...) they give corticoids or rituximab. But that is about it. I want to try IVIG soon.
  20. Aubry

    Autoantibodies and ANAs

    Yes I do get PEM. I don't know all anymore. Prof. Meirleir says I don't have real Sjogrens... He replied on my last consultation that the inflammation they have found in my lip biopsy (B-cells and T-cell aggregates) are same inflammations as in my gut and the rest of my body (he is still very...
  21. Aubry

    Autoantibodies and ANAs

    I only got Plaquenil @Gingergrrl since my blood chemistry is normal (CRP, ESR, ...). I do also have confirmed Small Fiber Neuropathy (positive biopsy 2 izv/mm). But rheumatologists are stupid I think and they don't wanna see connections with 'systemic' Sjogrens...
  22. Aubry

    Autoantibodies and ANAs

    I have positive lip biopsy for Sjogren (focus score = 2) and Anti-SSA autoantibody in blood present. Do I have now Primary Sjogren (as given by my rheumatologist) or do I still also have ME/CFS? Nobody seem to be able giving answers :(
  23. Aubry

    Could brain inflammation affect the eyes ?

    I also have positive Small Fiber Neuropathy test which fits the Primary Sjogren Diagnosis. So now I don't know if I suffer from ME/CFS or only Sjogren. It doesn't make it easier unfortunately since there are shitty treatments for Sjogren that mostly don't work ...
  24. Aubry

    Could brain inflammation affect the eyes ?

    After 5 years of having ME diagnosis I now have Primary Sjogren diagnosis. I have positive Lip Biopsy for Sjogren (focus score = 2), positive Anti-SSA in blood and sometimes ANA (changes in time).
  25. Aubry

    MRI neck/spine. Chiari present?

    Depending on how I draw the baseline angle it is every time more than 5mm
  26. Aubry

    MRI neck/spine. Chiari present?

    I have made an MRI of my spine and neck area. Radiologist didn't saw anything abnormal on it (except some degradation and scoliosis in general). But I think I might have some Chiari Malformation. What do you guys think? (See photographs in attachment)
  27. Aubry

    Evaluation of four clinical laboratory parameters for the diagnosis of myalgic encephalomyelitis.

    Problem with these type of markers is that they come along with many neurodegenerative diseases (I think). So not specific for ME?
  28. Aubry

    Autoantibodies against neuronal antigens (weak positive?)

    @Gingergrrl Because I have a smoking history of 10 years (from 20 to 30 years old). And my disease started quite suddenly and I don't recognize so much symptoms of ME (besides the chronic fatigue and PEM). After vaccinations I got very suddenly from 90% functioning to bed bound for months. It...
  29. Aubry

    Autoantibodies against neuronal antigens (weak positive?)

    @kangaSue Yes, but the laboratory says the result for these antibodies are negative. Is it then still an early warning system? Is an RX then sufficient despite the values of the antibodies not being zero?
  30. Aubry

    Autoantibodies against neuronal antigens (weak positive?)

    @Gingergrrl Yes :( almost always SCLC