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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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  1. V

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

    Did you have your collar fitted by a PT or similar?
  2. V

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

    Wow, that is amazing! I am so happy for you. I have those symptoms too, it's very frustrating being so limited. When I try to multitask, my brain just shuts down.
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Have you noticed any other improvements?
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Before surgery, how many hrs upright a day could you do? Remote video appointments are great. Are they covered by insurance, I wonder?
  5. V

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

    Then we have the same diagnosis apart from TC. Yes, 125 in CXA is definitely pathological! I've been disabled for the same years as you, I am 48. I will have surgery too, but need to figure out where. After my appointment with Dr Patel we drove by Susan, by chance actually. I was recommended by...
  6. V

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

    Thank you! I am so happy to read you are recovering well! Yes, pain is expected. When I saw Dr Patel last Friday he said jokingly that he avoids meeting the patient the first days after surgery because of the pain. But it sounds like a pretty quick surgery! 1 hr! What was your diagnosis? Why did...
  7. V

    Surgery CCI/AAI with Dr Patel at MUSC

    Hi! Has anybody done fusion for AAI/CCI C0-C2/3 with Dr Patel? I am a candidate for surgery and wonder how he does the surgery? Does it differ from Dr Bolognese/Henderson/Gilete in regards to invasive cervical traction?
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    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Hi! I just read your post. This might be too soon for you to even look at this after surgery. But if you by chance are reading this and have the energy to answer it would mean a lot. I saw Dr Patel last week and was diagnosed with CCI, AAI and EDS. He recommends surgery. I would like to know...
  9. V

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

    Hello @StarChild56 , When you write "insurance had no problem paying for it", was that for an upright MRI with flexion/extension? My PCP is very interested in me doing it because of my symptoms but I'm worried my insurance won't cover it. //Anna
  10. V

    Doctors Craniocervical instability/CCI etc

    Hi, Has anybody seen Dr Sandhu in Washington DC? He is a neurosurgeon at Georgetown Hospital. I am on the waiting list to see him, but it is a long wait:(.
  11. V

    bad reaction to Famvir(famciclovir)

    Thank you for your advice☺️. Which ME-docs have you visited?
  12. V

    bad reaction to Famvir(famciclovir)

    thank you!
  13. V

    bad reaction to Famvir(famciclovir)

    It seems like different labs have different reference intervals so it is so difficult to compare 🧐, but thank you for providing your results. Anna
  14. V

    bad reaction to Famvir(famciclovir)

    Hi, You write you have very high titers, is that EBV? How high? Anna
  15. V

    bad reaction to Famvir(famciclovir)

    Seems like a lot of us ME-patients are very sensitive to medicines in general. Are you seeing an ME-specialist? I need to ramp up slowly too.
  16. V

    bad reaction to Famvir(famciclovir)

    Thank you for your reply. I think your dosage is what my doctor aims at too(Dr Susan Levine).
  17. V

    bad reaction to Famvir(famciclovir)

    I have only been on famciclovir for 2 weeks, and no I haven't seen any improvements. But I've understood that it can take a long time so I'm not worried.
  18. V

    bad reaction to Famvir(famciclovir)

    Thanks for your reply. I’m taking 250mg once a day so far. Do you know what the most common dosage is? 500 mg twice a day? More or less?
  19. V

    bad reaction to Famvir(famciclovir)

    thank you all for your very kind replies.
  20. V

    bad reaction to Famvir(famciclovir)

    Thank you for your reply. Unfortunately the side effects are unbearable. Would you know any way to "bypass" them?
  21. V

    bad reaction to Famvir(famciclovir)

    I just started Famvir, but got a terrible reaction after taking 500mg once. In the evening I felt agitation, my brain just kept speeding and I felt "out of control". Since I am very sensitive to all kinds of medication, I lowered the dosage and I took only 125mg and 250 mg for a couple of days...
  22. V

    Bloodwork at Dr Kaufmann

    Thank you for your replies. Ouch, over 20 vials. There'll be nothing left of me. What is SIBO?
  23. V

    Bloodwork at Dr Kaufmann

    Hello! I have an appointment with Dr Kaufmann at OMI soon and wonder what type of bloodwork he usually asks for? Anna
  24. V

    Dr Kaufman or Dr Kogelnik? Is one better than the other?

    Thank you all for your replies. I have booked an appointment with Dr Kaufman in April (they are fully booked through March). Dr Kogelnik does see new patients but very rarely. I decided on Dr Kaufman since so many find him brilliant.
  25. V

    Dr Kaufman or Dr Kogelnik? Is one better than the other?

    I am about to book an appointment at the Open Medicine Institute. My question is; is one doctor preferred to the other? Dr Kaufman or Dr Kogelnik? I see quite a few threads on Dr Kaufman but none about Dr Kogelnik.