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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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Search results

  1. A

    Is/was there anyone here who has had cranialcervical surgey?

    @jyotiSo you have a period of total cessation of sympoms from your osteopath but had no relief from atlas orthogonal? What is your osteopath doing? Ill try anything that isnt overly invasive or permenant.
  2. A

    Is/was there anyone here who has had cranialcervical surgey?

    @Daffodil Thank you for replying, I'm so sorry this happened to you. And thank for the heads up on Dr Gilete, I sent him my photos but still haven't heard back. Do you trust Dr Bolognese's opinion?
  3. A

    Is/was there anyone here who has had cranialcervical surgey?

    Thank you, I appreciate it. What you speak of scares me, though. The idea of living with a cervical fusion when it doesn't deliver enough result to make you well again. It sounds like Jenn Brea and Jeff has the invasive cervical traction done first and that was their indicator that they cam...
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    Is/was there anyone here who has had cranialcervical surgey?

    @Jyoti Thank you for everything. I just contacted Dr Gilese tonight to see if they will look at my MRIs since they will do it for free. Atlas adjustments havent fixed any of my worst symptoms, unfortunately. The psychological ones. What it mostly does is leave me feeling calmer and my...
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    Is/was there anyone here who has had cranialcervical surgey?

    Really? Did the doctor fuse her in a decompressed position? @Daffodil
  6. A

    Is/was there anyone here who has had cranialcervical surgey?

    I'm nit really up on the current people dealing with this stuff- it sounds like Bolognese is the best guy for it? Is he the one at Harvard? I'm torn between it like you describe. Based on what Jenn Brea describes herself to be like when turning her head, etc, im not that bad. But I'm WAY worse...
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    Is/was there anyone here who has had cranialcervical surgey?

    Thanks for sending me these. I have, in fact, gotten the upright MRIs and X-rays. It showed lowered CSF flow and increased pressure in the brain as well as frontal lobe atrophy. What is your plan of attack, @Jyoti ? Are you following the cervical instability more? And which particular cervical...
  8. A

    Is/was there anyone here who has had cranialcervical surgey?

    I am aware of Jennifer Breas story but am looking for others who have gone down a similar path. My Dr is leaning heavily into CCI with me now after all treatments over 13 years have failed. I do, however, have almost all the same trajectory as her (mold avoidance, etc) and have a lot of...
  9. A

    Gut practitioner

    There is a good functional doctor in Hudson Valley, NY if you are near there
  10. A

    I have an odd hormone problem

    It's funny you say that. No, my liver and thyroid are not ok. In fact, they have been a problem since the beginning. I have been tested twice for hepatic encephalopathy and Wilson's Disease and luckily those were clear. But I do have Gilberts Disease and my bilirubin is always high. It feels...
  11. A

    I have an odd hormone problem

    Actually my DHEA is normal but cortisol is quite low. I also ghought dhea would be low but nope
  12. A

    I have an odd hormone problem

    Thank you all for your input
  13. A

    I have an odd hormone problem

    Wow Garz, that's shocking! I do sometimes put nettle in my bone broth which i make weekly. Also horsetail and oatstraw. I was thinking that I need to ADD aromatase inhibitors but I genuinely do not know my estrogen levels. I also agree with you that I need some good blood work done, I will...
  14. A

    I have an odd hormone problem

    Should also mention- I'm not sure if it matters but my total T3 one thyroid is very low. Free T3 and all other markers are good, though
  15. A

    I have an odd hormone problem

    All good suggestions. I was never checked for a pituitary tumor specifically but I have had at leat 3 brain MRIs since this became an issue and certainly nothing has come up in that front. Also, I have not had an MRI on my adrenals or testicle. I really want to start focusing on this more...
  16. A

    I have an odd hormone problem

    Hi everyone. I haven't posted in a while but have to run this question by you as I can't figure it out. I originally got sick in 2011 and have been on the hamster wheel ever since. However, around 2019 something changed. My hair started going gray (I was 35), I was losing hair (beard as well as...
  17. A

    B12: a simple 5-second poll for everyone

    My B12 has been high and homocysteine low every time it has been tested. Not sure if b12 is getting metabolized but its high in my blood
  18. A

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    "This is why simple brain training techniques usually aren't enough. You need more to access the unconscious brain. This is my next venture, right now I'm looking into: EMDR, Rapid Resolution Therapy, Accelerated Resolution Therapy, and hypnotism" This is somethung that really interests me. Ive...
  19. A

    Cholestyramine (CSM) Treatment - Elimination of Toxins

    I was on the PK protocol for a few months and my doctor pulled me off it because it wasn't doing anything.
  20. A

    How do you deal eith both POTS and low ADH

    Yah I'm so sensitive to my salt/water balance, if I dont nail it 100% it screws my mental state uo BAD. Which, unfortunately ends up being every day. I found the most stabilization with getting saline IV's but I can't afford to do them regularly. Its such a crappy cycle
  21. A

    How do you deal eith both POTS and low ADH

    I havent figured out how to manage these two together. For POTS you need tons of salt, but for diabetes insipidus you need way more water. I can't drink straight water, it will crash me bad so it leaves me feeling like there is no good option. Anyone deal with this and I hate to ask but..... is...
  22. A

    Atlas Orthogonal

    @Wayne i apologize i didn't see this sooner. Thank you for sending, I look forward to watching the video.
  23. A

    Atlas Orthogonal

    I agree that many chiropractors tend to shoot outside of their wheelhouse. Adjustments can't cure a lot of what they claim it may. However im never against looking outward toward trying new things, as long as they are safe. With this illness that seems to be the world we live in
  24. A

    Atlas Orthogonal

    Sure, but the risk of catastrophic things like pinching a coratid artery are much slimmer because its so finite.
  25. A

    Atlas Orthogonal

    Atlas orthogonal isn't neck manipulation. Its a very, very light tap on the atlas bone to adjust it. Its not at all like typical chiropractic
  26. A

    Atlas Orthogonal

    I'm starting to believe the same thing. How does one diagnose cranial cervical instability? I had the upriggt MRIs and all that and it showed my atlas was out of whack as well as reduced CSF flow to my brain but 5 weeks of adjustments hasn't improved anything
  27. A

    Atlas Orthogonal

    What makes you nervous about it? Its totally uninvasive
  28. A

    Atlas Orthogonal

    You actually saw relief in your symptoms when you had another chiro adjust you normally? What improved?
  29. A

    Atlas Orthogonal

    Has anyone done this? If so, did you see results? I just had standing MRI's done and it it showed my atlas out of alignment and decreased csf flow to my brain. I have gone 4 times for adjustments but haven't noticed anything yet. Im wondering what the results of this are here
  30. A

    Anyone do home ozone therapy?

    Are you doing insufflation? Please keep us informed