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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. H

    Low glutathione in ME/CFS brain: a pilot magnetic resonance spectroscopy study at 7 Tesla (Godlewska et al., 2021)

    Thanks, as far as i remember you never sent me that protocol though (i might remember wrong). What dosages do you recommend for those supplements?
  2. H

    Low glutathione in ME/CFS brain: a pilot magnetic resonance spectroscopy study at 7 Tesla (Godlewska et al., 2021)

    Does this have any implication for treatment?
  3. H

    Dr. Chia interferon beta - what dosage does he use?

    It seems that dr. Chia uses interferon beta on severe bedbound ME patients with surprisingly good results ("up and walking around the hospital in 2 weeks"), however it also seems that we don't know what dosage he uses (and for how long). Perhaps someone here who has been a patient of dr. Chia...
  4. H

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    I have been trying to order a few medications but the italian customs are extremely strict, they even block supplements. Since i live somewhat close to switzerland, if there was a swiss person that was willing to receive the package and hand it over to me (i will pay for the hassle of course) it...
  5. H

    Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome. (Espinosa, 2019)

    I have emailed a few people involved in studies with these cells and according to them another possible explanation for a low CD8+CD57+ number could be an overactive immune system. This wouldn't be a stretch because a while ago i tested CD40L, which is mainly expressed on activated T cells, and...
  6. H

    Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome. (Espinosa, 2019)

    Not every patient has low NK function (i don't for example, even though i have extremely low CD8+CD57+ cells). If i remember correctly from the studies it's about 70% of patients. So unfortunately it is not a marker for ME/CFS
  7. H

    Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome. (Espinosa, 2019)

    Amazing find! So it would end up being some sort of minor immunodeficiency right? I'm still not totally sure what CD8+CD57+ cells represent. In some studies, like this one, they are thought to represent senescent T cells, which cannot replicate anymore and are thus not really that efficient...
  8. H

    Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

    I was asked to share my experience here. I tried high dose methylprednisolone 160mg for 10 days and it gave me flu like symptoms and made my pots worse (and other symptoms related to dysautonomia i assume, like making my vision more blurry and had more frequent palpitations). It also give me...
  9. H

    4.5 Years of Steadily Worsening "Brain Fog" (Bradyphrenia)

    I have the same thing you have, excluding the pain aspects. In my case it has gotten so bad that i'm completely unable to function, it's impossible for me to do even extremely basic tasks like making food. I have unfortunately never found anything that works, and i'm not really aware of other...
  10. H

    AMPLIGEN (custom synthesis included)

    I am also interested. PMd you.
  11. H

    ME/CFS doctor in Argentina?

    We haven't really found anyone but it seems like travel restrictions will be lifted soon
  12. H

    ME/CFS doctor in Argentina?

    A friend of mine with a diagnosis of ME/CFS needs to move (temporarily) to Argentina, the climate there will help his health, but due to covid travel restrictions he can't be allowed to fly there unless he proves that he has a medical condition that can be treated in Argentina but not where he...
  13. H

    Low CD3+CD8+CD57+ ? Senescent T8 cells?

    I'm afraid both of you are wrong. CD3+CD8+ are cytotoxic T cells. CD3+CD8+ CD57+ are senescent cytotoxic T cells. I haven't seen a study showing the latter is low in ME/CFS. I also haven't seen a study saying or suggesting they could be low due to "immune exhaustion from fighting some type of...
  14. H

    Low CD3+CD8+CD57+ ? Senescent T8 cells?

    Hello all, I have recently done a lymphocite panel that included CD3+CD8+ CD57+, among other things. It is very low, in my case. I did that panel again after a few months and the result was confirmed. Oct 2019 CD3+CD8+ CD57+ 17 /mmc [170 - 375] July 2020 CD3+CD8+ CD57+ 23 /mmc [170 - 375]...
  15. H

    Whole genome done - now what?

    I purchased a 130X+30X whole genome test from Dante Labs (130X for the exome, 30X for the rest of the genome) and downloaded the raw files. I've heard that there are softwares you can use to scan them for genes associated with rare illnesses and so on. I assume that, unlike ME/CFS, this kind of...
  16. H

    OMF: Uppsala researchers focus on diagnosis and intervention

    https://paolomaccallini.com/2018/06/07/three-new-possible-autoepitopes-in-me-cfs/ This seems like a very good analysis on this kind of autoantibodies with some new insight
  17. H

    Podcast: Medical Error Interviews

    I am not able to listen to the podcast due to cognitive symptoms; what treatment did she try to get better once she had a diagnosis of ME?
  18. H

    Best antiviral for HHV-7?

    Thank you Hip! Would you be willing to post this calculations? I'm sure it will be impossible to convince a doctor without those...
  19. H

    Best antiviral for HHV-7?

    I have very high HHV-7 PCR, so the virus is definitely in the blood and replicating. I doubt there is any way to know for sure if its relevant to my illness(i'm not immunosuppressed as T cell panel is normal but i do have hypogammaglobulinemia) but maybe i could try an antiviral and see if it...
  20. H

    Is it all in your neck?

    https://paolomaccallini.com/2019/05/14/is-it-all-in-your-neck/
  21. H

    Impedance, the biomarker you wouldn’t expect

    https://paolomaccallini.com/2019/05/05/impedance-the-biomarker-you-wouldnt-expect/
  22. H

    KDM nasal swab - what does he measure? (sinusitis)

    Yes, my total igE is normal and so is triptase. I also just generally feel bad after eating anything, i can't recall something that is particularly bad.
  23. H

    KDM nasal swab - what does he measure? (sinusitis)

    Hello, I suspect my extreme attention issues and brain fog(which do not appear to be related to energy levels) are related to microglia activation aka neuroinflammation; I've had some sort of sinusitis for many many years now, it is not severe like in people with acute infections but i have...
  24. H

    Getting insurance to see Dr. Kaufman(from Italy)?

    There is no such doctor here that will do that unfortunately @Gingergrrl @Silencio Well, all of this is very confusing. I sent them a mail, let's see what they reply with first, maybe they can help me. If not, then maybe i can take a month to read everything 30 times over and maybe eventually...
  25. H

    Getting insurance to see Dr. Kaufman(from Italy)?

    That's what i do every time, i never mention ME/CFS. The thing is, they don't prescribe antivirals or do PCR because "it's just a normal viral reactivation, everyone has it from time to time". Indeed, but at some point i'll throw the coin from desperation, i can't keep going like this i keep...
  26. H

    Getting insurance to see Dr. Kaufman(from Italy)?

    (apologies if this is not the right section of the forum, feel free to move it) I have gotten to the point where i have almost complete paralysis of will and it is very hard for me to generate thoughts, the cognitive symptoms i have are absolutely insane. I suspect inflammation of the brain is...
  27. H

    Magnetic resonance with spectroscopy, ME/CFS and ADHD? Help please!

    Hello everyone, MR with spectroscopy is available where i live. Having proof of neuroinflammation would be very useful to be taken more seriously by doctors. Unfortunately they don't measure the whole brain, only an area that is 8x8x1 cm, so i have to choose where i want the metabolites to be...
  28. H

    House and Senate approve $2 billion increase in 2019 NIH Budget to $39 billion

    Don't you love how much care, empathy. research funding and help old people get when their brain stops working after a life full of joy, learning and accomplishments while young people who have to drop out of highschool and are never again able to read or study after they have just begun to...
  29. H

    Frustrated at misconceptions towards Insomnia

    i sleep 8-10 hours every night and i still feel miserable and can't do anything if that makes you feel better
  30. H

    Sick Constantly since on Rituxan

    Since ritux is itself an antibody wouldn't autoimmune dose ivig reduce its efficacy?