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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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  1. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I'm happy if I was helpful. I do understand about travel. Most CCI patients end up traveling considerable distance to see doctors who have the knowledge to help them, despite the great difficulty involved. Some require medical transport (and a huge insurance battle to qualify for insurance to...
  2. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    First of all, while upright MRIs don't have the best resolution and are typically lower resolution than supine MRIs, there are still facilities that offer them. They aren't common, but you can find any near you by Googling "upright MRI near me". Often the facilities use the term "Stand Up MRI"...
  3. valentinelynx

    High Quality B12

    My ME/CFS specialist prescribes me injectable methylcobalamin in very high doses (injected subcutaneously). It's 10,000 mcg/ml. It comes from Tailor Made Compounding.
  4. valentinelynx

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    Well, to get shingles, you would have to have been exposed to the varicella zoster virus at some point. A quick look at the literature tells me that asymptomatic or extremely mild cases of primary varicella infection are considered rare, but do occur in children. It's even possible for a fetus...
  5. valentinelynx

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    Sorry, I'm not following. What doesn't apply? Shingles is caused by varicella virus; that's not debatable. Primary infection with chickenpox is disseminated throughout the body. It travels from the skin lesions to the dorsal root ganglia in the spinal cord, where it remain. Reactivation due to...
  6. valentinelynx

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    Just a comment. I just saw this poll. I wanted to point out that shingles is caused by varicella zoster reactivation in people who previously have had chickenpox or the. chickenpox (a live vaccine). It's not caused by herpes simplex virus, which causes cold sores or genital herpes, depending on...
  7. valentinelynx

    Dissolving implant for pain

    Sounds like it's for short term use, as for post-op pain. Strange that the article implies that there's no options between this new experimental thing and opioids, when local anesthetics delivered by a catheter to block nerves have been used in surgery and post-op pain for many decades, quite...
  8. valentinelynx

    CCI/AAI and uMRI measurement questions

    I suggest you join some of the CCI Facebook groups, where people give good advice about spinal (& brain) issues in ME/CFS and informal MRI readings. Here are some options: "ME/CFS+ Brain and Spine"—started by Jen Brea and friends, is focused on things like CCI and tethered cord, as well as...
  9. valentinelynx

    Cromolyn as a mast cell inhibitor? [TWITTER] June 2022

    Nasalcrom is an OTC cromolyn nasal spray for treating nasal congestion. Gastrocrom is the brand name version of the oral cromolyn that many people with MCAS use. The generic is just called cromolyn sulfate. It used to be expensive, but seems to be less so lately, and my insurance doesn't even...
  10. valentinelynx

    High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

    Interesting. I think I may have taken Mn supplements at some point in time. But, when I read that Borrelia (Lyme disease bacteria) requires lots of manganese to thrive, I decided to not supplement that mineral anymore, because I was concerned about having chronic Lyme at the time. Perhaps that...
  11. valentinelynx

    a common genetic variant (rs2250870) within PDE9A associated with Idiopathic Hypersomnia. Tanida 2022

    Interesting. While some people with ME/CFS have never quite felt well their whole lives, or have had other indications of something wrong, the only negative health-related thing I had prior to falling ill at age 31 was a long history of hypersomnia. I simply needed more sleep than average: to...
  12. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I don't recall names right now, but there are a very few UK doctors whose names come up as potentially helpful for CCI and related conditions. There is a UK-based Facebook CCI support group where you might have better luck finding local resources: Cranial Cervical Instability • The Brain To...
  13. valentinelynx

    Vision problems , most likely neurological

    I think you were looking into CCI at one point. I don't recall the outcome or why you can't do traction anymore. But, for the record, double vision and especially nystagmus, frequently occur with CCI and Chiari malformation, possibly also with tethered cord.
  14. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I have no personal connection to Jennifer Brea, so I can only talk about what I've read of her accounts. From what I recall, she had COVID-19 and that knocked her back pretty badly. Before that, she had some additional issues that needed correcting, such as jugular vein stenosis caused by the...
  15. valentinelynx

    A treatment that helps me tremendously

    I'd be curious to know if you have your vitamin D levels measured in periods of low and after periods of high sun exposure.
  16. valentinelynx

    Fatigue still haunts me …

    To second (and third) the opinion: Bartonella!
  17. valentinelynx

    Can't control malaise

    As someone who was deeply skeptical that it would apply to me, and amazed to discover it did, I'd be remiss in not suggesting that anyone with ME/CFS look into spinal/structural issues. I read @jeff_w 's story when he'd discovered that he had craniocervical instability, and learned that once he...
  18. valentinelynx

    Can't control malaise

    In the early years of my illness, I was transformed by tramadol. Jay Goldstein, MD had me try it in his office and it brought me back from the virtual dead. It served that purpose for me for a few years, but eventually lost its benefit. Other opioids have been the mainstay of my treatment since...
  19. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Both @jeff_w and Jennifer Brea describe their illness onsets as occurring after viral illnesses. My onset was also sudden—I started feeling ill suddenly while on a hike. I thought I had some kind of flu, from which I didn't recover. I'm pretty sure that having a sudden onset of illness does not...
  20. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Ah, OK. No, it's not because of brain swelling, but rather because, as the sentence says, "the skull is just not big enough for the brain". The definition of Chiari I (there are 4 types of Chiari malformations, Chiari I is the most common), according to the Mayo Clinic website is: "Chiari...
  21. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Not sure what you mean, exactly. Is it a general question about the cause of craniocervical instability? If so, the answer is, no, it's not caused by brain swelling. I can think of a way they could be connected—an inflammatory process that causes brain swelling could also cause inflammation with...
  22. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Quick correction... it's Jeff Wood (not White), @jeff_w . He is working at the ChiariEDS center (Dr. Bolognese's practice), screening new patients. A link to the page with his contact info: Chiari EDS Center/New Patients. Jeff's webpage MEchanicalbasis is highly informative, as well. Sorry...
  23. valentinelynx

    Less likely to recover after three years? Is this true?

    I no longer recall the source, but I developed the belief somewhere along the way in my 29 years of this illness, that the breaking point is 5 years: recovery is most likely within the first 5 years of illness. Perhaps that was refined to 3 years at some point; I don't know. And I'm aware this...
  24. valentinelynx

    Anyone else feel the worst first thing in the morning?

    Yes. I found a piece of writing of mine yesterday, from many years ago, describing my personal illness experience. It sounds so extremely awful that, if it weren't my own words, I think I might tend to believe the writer was being overly dramatic. The topic was how it felt to wake up in the...
  25. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Sorry, that's frustrating! I don't know the admins personally so I don't think I could effectively vouch for you. And I don't know why they would reject you, if you answered the screening questions appropriately. In the "About" section, this is what they say about group admission: "Note: we...
  26. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I know that the waiting list for CFS/ME Brain & Spine is quite long: several months at times. The admins have developed an extensive "Pre-group" set of resources so that pending members can review the material and be up on the topics under discussion when they are admitted. I'm not sure what the...
  27. valentinelynx

    Double vision

    I've had some degree of double vision my entire life, thanks to being born cross-eyed. I had eye muscle surgery when I was 2 years old, but never developed good binocular vision and when tired, I'd see double. In more recent years, the double vision got worse and interfered with my reading. It...
  28. valentinelynx

    My ME is in remission

    You can follow @JenB 's story on her Medium account at: https://jenbrea.medium.com/?p=8575c7d47e53 The last post was Feb 2020. She's active on Twitter at https://twitter.com/jenbrea?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor
  29. valentinelynx

    Ok science geeks — what does this tell you about my physiology??

    Well that’s an interesting link I hadn’t considered—one between behavioral patterns and changes in physiology on a cellular level. Intriguing.
  30. valentinelynx

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    "ME/CFS+ Brain and Spine". It's the group started by @JenB (& friends). Check it out; lots of useful info. There's a waiting list to join but the "pre-group" resources are valuable, too.