• Welcome to Phoenix Rising!

    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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cci

  1. BaileyBeached

    Urolithin A effects particularly in MCAS and cci

    Hi everyone, I have mitochondrial dysnfunction as well mcas, cci, ijv compression, Lyme and severe dysautonomia. Urolithin A was recommended to me for mitochondrial issues, and I saw a paper saying it also boosts collagen production and a posts here or there saying it seemed to help floxed...
  2. frozenborderline

    Fluoride toxicity from tea

    This is really a concern. The darjeeling is so good I'm getting addicted but Tea in general has more fluoride than coffee which has none, but may be worth the risk for me Get tired of coffee sometimes Probably depends on tea growing region too Fluoride In Tea: Risk, Ranking & Guide (Search...
  3. Hip

    Link between craniocervical instability (CCI) and Dr Markov's bacterial dysbiosis theory of ME/CFS?

    Link Between CCI and the Markov CBIS bacterial dysbiosis theory of ME/CFS? Dr Igor Markov in the Ukraine say he has found the cause and the cure of ME/CFS: he believes ME/CFS is due to a chronic bacterial dysbiosis in the kidneys, and sometimes also in the nasopharynx (the nasopharynx is an...
  4. Shanti1

    Craniocervical Instability - Dr. Amy Proal interviews Dr. Ilene Ruhoy about diagnosis/treatment of structural issues such as CCI

    Ilene S. Ruhoy, MD, PhD is a board certified neurologist and Medical Director for the Chiari/EDS Center at Mount Sinai South Nassau. Dr. Ruhoy has trained in both pediatric and adult neurology at Seattle Children’s Hospital and the University of Washington where she received additional training...
  5. frozenborderline

    My grand theory of etiology part II

    I've posted my unifying theory of etiology before. But part II is not quite done yet, however it has a lot of the parts there, just not all there, and not assembled properly or in order, so I've decided to kick off working on assembling it by posting about it here. None of the parts by...
  6. frozenborderline

    I need help. Nyc/new Jersey area

    I'm sicker than ever. It's hard to explain all the things I need help with with how sick I am and how hard typing is becoming ironically. But some of it includes stuff a social worker would deal with ideally, or just stuff that is under purview of caregiving or doing tasks related to helping...
  7. frozenborderline

    ME/CFS "theory of everything" Etiology

    https://walkerstorz.com/me-cfs-etiology/ This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. :) But I think that its substantial enough that I may as well put it out there for now. @Hip I referenced your dual factor...
  8. Hip

    Lactic acid injection fixes prolapsed spinal disc (back pain) by rebuilding collagen: could this help CCI by stimulating collagen in lax ligaments?

    This article details a study at the Stockholm Spine Centre in Sweden involving a single lactic acid injection, which is able to stimulate bulging (prolapsed, herniated) discs in the spine to repair themselves within a few months. The lactic acid (which presumably is injected into the disc...
  9. frozenborderline

    Keeping a master list of all abnormal results in my case

    Starting now and off the top of my head. I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory. Abnormal Clivo axial angle, on two separate...
  10. Gratefulliving

    CCI Symptoms vs POTS

    Hi all! I am going to get an upright mri to look for CCI... I was diagnosed with ME/CFS 5 years ago. Also have been diagnosed with EDS and hyperadrenergic POTS. I’m curious if CCI symptoms develop over time. I recently (6months) have developed more neurological symptoms like nonepileptic...
  11. Hip

    POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)

    This poll asks whether you have a sacral dimple on your lower back, within (or just above) the crease between the buttocks. If you have a sacral dimple, this may be medically significant, as it can be an indicator of possible spinal abnormalities. And a sacral dimple may also be linked to...
  12. W

    Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

    Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially...
  13. J

    #MEspine hashtag

    Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most...
  14. frozenborderline

    Helpless (Essay i wrote from current place of pain and uncertainty)

    https://atomicchesterton.blogspot.com/2020/06/helpless.html?m=1
  15. tiredgirl928

    My MRI images for CCI/AAI/Chiari/tethered cord

    I just had my upright MRI completed and I was wondering if anyone could offer some insights :) I have numbness and weakness all over, but it is worse on the R side (along with fatigue, insomnia, GI issues, and PEM). I have not been evaluated for Ehler-danlos, but I do have noted hypermobility...
  16. Mendo Zebra

    CCI and cervical collars, etc.

    I am having a hard time with cervical collars. I first got an Aspen but it just didn't fit me, so I got a different back panel, still didn't fit. My PTs all thought it was just too big for me. So I got a Miami J collar in size xs. This one fits much better and is much more comfortable. But it...
  17. B

    Determining the safety of cervical traction: How do you choose a good PT?

    As many of you may know, Dr. Bolognese requires that you report dramatic and immediate positive results from a trial of cervical traction before being accepted as a patient for CCI. Many have already reported dramatic and instantaneous positive results from cervical traction. It seems that if...
  18. Hip

    Article in Spanish press on the treatment of ME/CFS by CCI surgery at the Teknon Medical Center Barcelona (Dr Gilete's center)

    Article on how neurosurgeons at the Teknon Medical Center in Barcelona are finding that surgical treatment of craniocervical instability (CCI) manages to reduce some symptoms of patients with ME/CFS (this is the center where Dr Gilete works): CATALUNYA - Researchers demonstrate that operating...
  19. B

    My MRI imaging for CCI evaluation

    Okay, so I've got the full set of flexion, extension and neutral MRIs. It would be really cool if @jeff_w, @JenB and @Hip could give their opinion. :) From my amateurish analysis, a lot of the measurements seem borderline or pathological: CXA in neutral is around 139 degrees, which is...
  20. Hip

    Any members test NEGATIVE for CCI and related conditions?

    Are there any members here who tested negative for craniocervical instability (CCI) and related conditions such as Chiari, cervical spinal stenosis and atlantoaxial instability (AAI)? If you tested negative for CCI and related conditions, please could you answer my CCI SURVEY. Thus far, it's...
  21. Hip

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    Craniocervical Instability, Chiari and Spinal Stenosis Survey For ME/CFS patients diagnosed positive or negative for CCI and related conditions This survey is for ME/CFS patients who sent their MRI or CT scan to Dr Gilete, Dr Bolognese, Dr Henderson, Prof Smith or another neurosurgeon and...
  22. Hip

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Dr Vicenç Gilete and Dr Fraser Henderson both prefer patients to send in upright MRI or CT scans, which include the head in a full range of positions: neutral (head level), flexion (head looking down), extension (looking up) and rotational (looking left and right). By contrast, Dr Paolo...
  23. nyanko_the_sane

    Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra

    These Posts Have Been Moved from: https://forums.phoenixrising.me/threads/jen-brea-on-whether-some-of-us-might-be-mis-diagnosed-eds-patients.75684/page-2 Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra Not sure how this great webinar got past us, but I am posting it here...
  24. A

    Finding a Facility for CCI Imaging

    Hi! Has anyone ever compiled a resource of imaging facilities that have a 3T machine and could perform the upright MRI to determine if a patient has CCI? Or does anyone know of any/how I could go about finding one? Dr. Chheda is considering writing the MRI order for me, but let me know that I'd...
    • ashleyO
    • Thread
    • 3t machine cci craniocervical instability imaging mri upright mri
    • Replies: 5
    • Forum: ME/CFS Doctors